History

Tuesday, December 25, 2007 3:30PM CST

Merry Christmas everyone! It is beautiful out today and I love sitting here, watching the snow come down. We are getting ready to head to my parents' house. We have been having a good Christmas. Yesterday, I took the girls to church w/ my family and they were fairly well behaved. When the priest said, "And they named the baby Jesus....", Kylie started clapping. She also gave the sign of peace to about 5 different people, whether they wanted to give it or not. =) My family came over last night for dinner and some presents. We got to talk to my brother Andy, which was very nice. He is doing well and it is work as usual today. The girls got up and opened presents today. Ava was thrilled, as Santa brought her a train set, complete with a little conductor outfit. Kylie has been busy playing with her new animated bear that tells stories. We went to my parents to open presents this morning and then home for naps.

Kylie has been doing pretty good. Her cough is getting better and she has not thrown up in 2 days. She is still having a handful of seizures each day, although they are stronger than they have been. A little while ago, she had one and took a header into the Christmas tree. We'll connect w/ Dr Frost's office this week and decide about the med plan.

I hope everyone has a Merry Christmas and wishing you all peace and blessings in the new year.

Tuesday, December 18, 2007 10:42 AM CST

UPDATE Wed 130pm~
Ava now has an ear and sinus infection and Kylie started throwing up again. It is never ending! Dr Frost's office called yesterday and is going to try and set up Ky's MRI of her head and abdomin. If she truely is having swallowing issues, she will have to go under general anesthiea, which I am not thrilled about. That's all for now. Hopefully both of our girls will feel better soon!

Kylie is still laying around today. We got home from the hospital around 730pm last night and probably still would have been there if I hadn't asked if we were being discharged. After much confusion, we left w/ antibiotics and zofran. Ky continues to have a fair amount of seizures. Dr Frost told us to call if she continues to do this and they will tweak her seizure meds. I am hoping things will look up when she starts feeling better. She slept in until 9am and is about ready to go down for a nap now.

We follow up w/ Dr Frost next month and will get an MRI and abdominal CT scan scheduled then. The MRI will be to see if there are any changes w/ her ventricles and if she had any lasting damage from the big seizure she had in Sept. The abdominal CT will check her kidneys for any tumor growth and to make sure her liver and pancreas are doing ok. She has her swallow study set up for Jan 2nd. Hopefully it will give us some answers to her choking issues. Ky is staying home from school and therapy today and probably will continue to do so the rest of the week. I am hoping things calm down before Christmas! Thank you for your continued thoughts and prayers!

Sunday, December 16, 2007 6:35 PM CST

**Mon 1015pm- We got home around 730pm tonight. I'm too tired to update, so I will try to get around to it tomorrow. Thanks for your prayers!

**UPDATE Mon 310pm**
Waiting, waiting. The ped was by this morning and wanted us to see Dr Frost, then most likely go home. Dr Frost came by around 11am, seemed a little concerned about her swallowing issues and the fact she hasn't made much gain in her development since her last big seizure. He was going to talk to the ped about doing an MRI and I haven't heard anything since. I am assuming we will still be leaving at some point tonight. Ky still has an icky cough but still no fever. She slept for about 3 hrs earlier, isn't drinking and ate half a cookie for lunch. So, we wait. We had a visit from a MN Wild player, (Bouchard) and Ky got a nice blanket from them. She said, "Hockeeey!" We have the swallow study set up for Jan 2nd. I'll update later when I know what's going on!

**UPDATE Monday 930am**
Kylie is doing much better today. Her blood sugars were stable all night and the rest of her blood work came back pretty good. The blood cultures won't be back for a few days. She hasn't thrown up since last night and has not had a fever either. She still has a junky cough and is getting stuff up w/ it. She had a seizure around 5am but nothing since then. Did I mention we have been awake since 3am and are on round 8 of "Happy Holiday" w/ Elmo? We are waiting to see Dr Frost- he wanted med levels done but she already got her morning meds, so that won't work. We are also waiting to see her regular ped, who will decide if we can schedule the swallow study/EGD today. Ky still isn't drinking anything, so they turned her IV fluids down and are going to get her a bland lunch. Ky's night nurse said there the nurse who worked the night shift were saying, "You get to take care of Kylie Jo! You are so lucky- she is the cutest thing." I have to agree! Hopefully we will know more after we talk w/ the drs. More later...........

Kylie had a pretty crummy weekend and ended up getting admitted to Children's this afternoon. She had been up coughing for the past 3 nights and yesterday, started throwing up. From 8am- 12pm today, she threw up 10x and her seizures started back up. They drew her labs in the ER, which showed she was dehydrated, and her blood sugar pretty low (40). She also has a ear infection and from the smell of her breath, a sinus infection as well. Sooooo, she got some IV antibiotics, IV fluids, a neb and some IV zofran for the vomimitting. Her O2 sat was around 93which is ok but she is usually 99-100They have her hooked up to the O2 monitor for the night. They drew a bunch of labs and did some blood cultures. Her temp was 100-103 all weekend. She was low when we came in but it is starting to go up again. Unfortunately, her seizures kicked into high gear today as well. She was up to 9 in an hour earlier. Things seem a little better since she got some fluids. I am assuming that if she feels better tomorrow, we should be able to go home. If not, they may do her swallow study while we are here. Ky has been sweet as always today~ saying hi to all the drs and nurses, not complaining even when she is throwing up, sticking her tongue out and saying "Ahh!" when the dr wanted to check her mouth and even pretending to throw up in bucket when I told her what it was for. She is all snuggled in, watching "Elmo". So much for our healthy Christmas season. I'll keep everyone posted and please continue to keep our girl in your prayers.

Friday, December 14, 2007 11:56 PM CST

We started the day at 4am, when Ky woke me up asking to watch Elmo. She stayed awake until about 1030am and then crashed. She had a fever all day, hitting 102.2 as a high. She had about 6 seizures last night but we only saw 1 today. We have been nebbing her and Ava all day, which seems to be helping. We skipped all her therapy today and stayed home. Both girls will be hanging out w/ Grandpa and Uncle Ben tomorrow, while we are at CPR. We won't know until early next week when Ky's Esophagram/swallow study will be, as the scheduler is out of town.

Neil and I have 1 more week to get through work and then we took the week between Christmas and New Years off. We haven't spent that much time together ever, aside fro when Ky is in the hospital, so we are super excited. We have some painting to do and plan on getting together with friends. Other than that, we are hoping to just spend time with 2 healthy girls. Keep your fingers crossed! Have a great weekend!

Tuesday, December 11, 2007 10:44 PM CST

**UPDATE~ Thursday~
Ky is pretty miserable at this moment. She was up most of last night, coughing, retching and then swallowing her puke- yuck, yuck, yuck. We kept her home from school today and she saw the dr this morning, (after going to our appt yesterday and not seeing the dr, as the scheduler messed up where we were supposed to be!). Although her and Ava have been junky, both have clear lungs and we are just supposed to watch them close, in the hopes they don't develop pneumonia. She has been running a temp all day and is about 101 tonight. She used to handle 105 like a champ but is really feeling yucky tonight. She has also had a handful of seizures in her sleep, which is somewhat expected but a bummer. Her ped is getting her set up for a swallow study and esphogealgram at Children's. Hopefully we will get to the bottom of her choking issues soon. They also did a strep test, since Ky's throat was pretty red and so far, it is negative. Neil's nebbing her now, so hopefully she'll sleep better tonight.
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Good evening. Things have calmed down around here again. Ava was sick all weekend and although better, still not 100But, her sass is back, so I think she is feeling much better. Her and Ky both have junky noses now but nothing major. Kylie has continued to keep us on our toes w/ her choking episodes, so much that it is starting to really scare me. We are avoiding bread if we can and everyone is taking infant/child CPR refresher this weekend. We are leaving the girls w/ my dad while we all go, which could be an emergency all on it's own. =)
I ended up getting the entire weekend off, due to a low census at the hospital. I finished up Christmas shopping and bought Ky her first pair of Crocs. She has never been able to wear shoes w/o ankle support, so this is huge for us. Aside from being trendy, =), I got them for her to wear in the house, since hardwood floors and socks are not Ky's friends. She has taken numerous spills from slipping on the floor in her socks, yet hasn't fallen yet in her new shoes.

We are having some speech issues w/ our dear girl. She is very repetative at home and repeats everything we say. Not really engaging in conversation, just one word answers or comments. However, at speech, she is putting 2 words together and is very chatty the whole session. We thought maybe we were being fed a line of bull, until Neil listened through the door today. Sure enough, Ky was a regular chatty Cathy. Now, we just need to figure out how to bring those skills home. I think a huge part of the problem is all of us at home know what she wants, without her telling us. Plus, she knows how to work us, (esp her daddy!) We need to be more consistant on having her say what she wants to say, on her timeframe, before we fill the word in for her.

As for the choking issues, we are seeing the ped tomorrow afternoon, to see what we should do, if anything. The tone in Ky's mouth is pretty low, so she has a hard time chewing and moving food around. Not to mention she shovels food in pretty quickly. Hopefully the dr will have some ideas. Ava is getting some shots tomorrow, which should be loads of fun.

Last night, Neil and I took the girls out to dinner. The 4 of us have not done anything together in forever, so it was nice to get out. Kylie had "Multicultural Night" at school last night, so we got to go meet some kids in her class, do a few projects and eat a few snacks. While Ky was busy making her picture for their flag, Ava was busy siding up to anyone that had food. She would bat her eyes at them and say, "Peeas!", while signing "please" at the same time. She made quite a few friends that way. Afterwards, we went to the mall to get Ava some new clothes, (I came home from work yesterday and my 2t girl was wearing 12mo pants, compliments of her dad- not a pretty sight). The girls checked out the Merry-Go-Round and peaked at Santa. In all, it was a good night.

We have a busy week ahead as usual. Ky has therapy every day, school and a few appts. Saturday, I have my annual girls ornament exchange w/ my ladies from highschool at SBH. Sunday, Jody and I are attempting church again, then lunch w/ the rest of our girls. Later that afternoon, the girls will get to see their boyfriend Cam, (who will not feed them foot long donughts!) I love this time of year, when I get to spend time w/ my most favorite people. I can't believe Christmas is only 2 weeks away. We usually do all the running all over town but this year, we are snuggling in at home. We will be giving thanks for the most important things in our lives~ our children, our family, our friends and our faith. Without those 4 things, we would never have gotten to where we are today. We will continue to pray for the safety of my brother Andy and cousin BJ, both still in Iraq, as well as for the comfort of our dear friends that have lost their babies much too soon. We are praying 2008 is our year, full of health and happiness. Jan/Feb is statistically horrendous around here for seizure control and we have been in the hospital the past 3 yrs during those months. I am nervous, yet hopeful, that we can avoid that in the new year. Ky had her first seizure in 9 months on Christmas Eve last year and although the road has been rocky this past year, she has come so far. It's hard to believe she also started walking last year at this time. We continue to be thankful for each miracle God grants us, no matter how small they may seem. We are so increadibly THANKFUL to be enjoying this holiday season without the monster. And as always, we continue to pray for these good days.
Have a beautiful week!

Friday, December 7, 2007 7:52 PM CST

Good evening. We have been having a few medical mishaps around our house the past few days. It started w/ our poor, neglected dog. I was prepping her to go to the groomers, (she's a shih tzu- however you spell it!), and since she was such a disaster, I thought I'd trim her up a bit. I looked at her foot and one of her nails had grown into the pad of her foot. It looked awful and infected. So, after a vet trip, the nail pulled out and some antibiotics, she was good to go. That night, Neil got home late and unbeknowst to me, gave Kylie all of her bedtime seizure meds. An hour later, I gave them again. With the amount of meds she is on, it was not a good thing. We realized it w/in 15 minutes, so I had to stick my hand down her throat and make her throw up. You would think w/ all of her past problems w/ puking and reflux, it would be no problem. After about 4 minutes of trying, she finally started gagging and then threw up, about 4x. We talked w/ the neuro, who was concerned how much transene she got. it ended up fine and she was good to go the next day. She has since had a few staring seizures, (after a few weeks w/ no seizures!!), so we are going to try our best not to OD her again. =) Ava had been running a low temp all week and then last night, lost her voice. She was a little wheezy last night but we thought she was just a little congested. This morning, she sounded worse, so we got her in for an appt this afternoon. My mom took her and the dr said she has a severe case of croup and he was concerned w/ her breathing. He gave her a shot of prednisone in her butt and she is on oral pred for the rest of the weekend. If her breathing doesn't improve, we need to take her into the ER. She sounds a little better tonight but is completely white as a sheet. Through all of it, she never coughed once and does not have any cold symptoms. Her airway was just slowly closing off. So, I'm going to sleep w/ her tonight and Neil can be on seizure patrol. My sister-in-law, Andrea, ended up in the hospital last night w/ a bowel obstruction and may be having surgery tomorrow or Sunday. She is my brother's wife, who is in Iraq, and I know she is missing him terribly right now. Please keep her in your prayers.

Aside from all of that, things are going ok around here. I got the night off work and have been cuddling w/ my kiddos and working on Christmas cards. We don't have any major plans. I attempted to take the girls to church last Sunday, with the help of my good friend Jody, and it was a minor disaster. Depending on how Ava feels, we may attempt it again on Sunday. If not, we will stick to being what my sister likes to call "CEOs" (Christmas and Easter Onlys). =) I need to finish my Christmas shopping too.

Hope you all have a great weekend!!
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Please join us this Sunday, Dec 9th, at 7pm to 8pm(your local time), for The Worldwide Candle Lighting. This will create a 24 hr wave of light in remembrance of all children who have died. This is sponsed by a nonprofit group called Compassionate Friends. You can also post a message in remembrance of the child at www.compassionatefriends.org.

We will be lighting our candles for our most special angels~ Drew, Muffin, Jess, Tori and Maddie. We miss you all so much and will never forget you!

Tuesday, December 4, 2007 1:51 PM CST

Please join us this Sunday, Dec 9th, at 7pm to 8pm(your local time), for The Worldwide Candle Lighting. This will create a 24 hr wave of light in remembrance of all children who have died. This is sponsed by a nonprofit group called Compassionate Friends. You can also post a message in remembrance of the child at www.compassionatefriends.org.

We will be lighting our candles for our most special angels~ Drew, Muffin, Jess, Tori and Maddie. We miss you all so much and will never forget you!

Thursday, November 29, 2007 11:19 PM CST

Good evening. I can't believe the weekend is already here. Time is flying by. We have been seeing some staring seizures the past few days, mainly in the evening and tonight, after she fell asleep. Neil and I talked about it and we'll see how the weekend goes. If she stays the same, we'll keep watching her. If things pick up, we will finally start the vigabatrin. We would rather try it for a few weeks before things get out of control again. The funny thign is that Ky has been super clear the last 2 days. Her teacher said on tuesday that it was the best day Ky has every had at school. Lots of talking, following directions, and participating. I guess it goes to prove my therory that Ky's brain doesn't function as well as when she is seizing. =) However, I'll take no seizures.

The girls had music class tonight and did great. We went to dinner w/ the Berigan girls and had a nice time. We have been staying busy as usual. We celebrated my dad's 51st birthday on tuesday, (happy b-day Dad!!) and went to my sister's basketball game. During the National Anthem, Kylie was yelling, "Karw-ee! Karw-ee!" and waving like mad at her. It was pretty cute. Ava was dancing w/ the cheer leaders and love to shake her "booty".

We ordered Kylie a therapy vest last week, which we will hopefully get in soon. It is a weighted vest she wears in OT and helps her to find balance. Although her walking is much, much better, she still has a hard time finding keeping her body straight when she walks and the vest helps correct this. We are also getting her some leg weights, which will hopefully help her build up some muscle. We finally gave in a few months ago and got a handicapped parking pass. It expires in 2013, so I hope she will be walking better by then! Although Ky is only 3, she is tall for her age. Her legs hang out of the stoller and I tend to run over her feet if I'm not careful. She can walk short distances or she can walk for awhile at a snails pace but if we want to go for long walks or to somewhere where she needs to be in a stroller, we need to find something better. We are not ready to get a handicapped stroller but if anyone has any ideas of regular larger strollers that fold well, I would love to hear some ideas. We do have a jogger, which she fits in but it does not fit well in the back of our van. I have a sit/stand stoller for the kids, which we do use but Ava is getting to the point where she would rather walk than ride and since she keeps up pretty good and stays with us, I let her walk for the most part. Who'd have thought? I thought the kid would never walk!

Anyways, we are preparing for a lot of snow this weekend. I am a freeze baby, so I am not looking forward to it. We don't have a whole lot planned for the weekend, so we'll probably snuggle in and watch the snow. Please continue to keep my brother in your prayers. We miss you Andy!!

Sunday, November 25, 2007 1:48 PM CST

I am enjoying a few hours of pure bliss, or what is otherwise known as naptime at our house, but only when we have willing participates. Both girls went down good today, so I thought I'd try and update quick.

We had a really great Thanksgiving. My family came over Wed evening and had an early turkey dinner. We then had our annual "family game night", which was a blast. The only thing that would've made it better was if my brother was home for it. Kylie stayed up until 11pm, enjoying the action. The girls slept in until 1015am thursday, a rare treat around here! We watched the parade and then headed to my aunt and uncle's house. We played in the annual "Perlt Family Football Game", which only lasted about an hour, as the "senior" members of the team wear out pretty quick. =) I got up super early friday and headed out w/ my aunt and cousin for our annual shopping trip. I found some great deals. That afternoon, Kylie had a pretty good fall and hit her head really hard. She was also running a temp, so we just snuggled in for the night. We have been hanging out at home all weekend, getting ready for Christmas. We got a nice email from my brother, including pictures of him flying some VIPs. His job is changing over there as well, so we need extra prayers for his safety. Also prayers for my cousin, who was injured in Iraq last week, although it was fairly minor, compared to what it could have been. My mom suprised me with an early Christmas gift. When I was away at my girls weekend, she took the girls to have their pictures taken w/ Jes, (the photographer who did Kylie's pics before). They turned out great!! I'll try and post one of Kylie as soon as I can. Thanks mom!!

As for our girl, she is doing great. I am not saying anything out loud, but she is good. We have noticed some aggression, most likely from the high dose of Keppra that she is on, as well as an increase in her impulsiveness. It can get pretty frustrating at times but the unfortunate side effects we see from these meds could be worse. Cognitively, she seems to have platued a bit. Before these big seizures, she seemed to be learned in leaps and bounds. Now, she seems stuck in the same place. Whether this just seems more apparent because Ava soaks up anything and everything you say or do, I'm not sure. I'm going to talk to her teachers before Christmas break and see if they have any input. Some days she is so much more clearer than others, especially before she gets her morning meds. I would give anything to see what she would be like off all her medication. Unfortunately, that will most likely never happen, so we just keep plugging along. I just need to keep working on patience, which was never my strong suit. Anyways, that's all that is going on with us. Have a great Sunday!
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***2008 Step Forward to Cure Tuberous Sclerosis will be held Saturday May 17th at Harriet Island, in St Paul. This year's walk will include a 5K run! More details to follow**

Sunday, November 18, 2007 8:35 AM CST

***NEW SLIDESHOWS***
Good morning. I thought I'd update quick since I have a rare quiet few minutes to myself. Kylie has doing wonderful the past few days. I am not going to write anything in print, since it always seems to jinx us, but she has not done this well in a very, very long time. And, we have yet to start the vigabatrin! Her walking is getting back to where is was prior to the last big seizure and she is talking alot more. Whether it is due to feeling better or from trying to keep up w/ her little sister, I don't know. =) We got her progress report from school and she is doing pretty good.

We were driving home yesterday and Christmas music was playing on the radio. I wasn't really paying attention to the kids, until I heard what they were doing. They were singing! Kylie was singing the "Fa" part and Ava was singing the "La, la, la, la, la" part. It was too darn cute. They have been having the funniest conversations together, most of what I can not understand but they are very serious about it.We took the kids to see Santa at the mall the other night and if anyone gets a chance to go to Rosedale Mall, the Santa there is wonderful. He actually got both kids to come up to him and got Ava to sit on his lap, (after a little bribery w/ hos Elmo toys). Although Ky freaked a bit when we put her on his lap, the fact she got close to him was good enough for me.

Neil has been gone again this weekend for his last round of hunting, so it will be nice to have my second hand back soon. Although I love my one on one time w/ my girls, the past three 4 day weekends have been enough!

As the holiday season approaches, please continue to keep our dear friends in your prayers~ the Olson Family, the Beecher Family & the Roth Family~ as they prepare to spend the holidays without their babies. Also keep the rest of our 7940 families in your prayers, as their children either continue to battle the seizure monster or if they have finally reached that level of stability, that they can stay there. Also continue to keep my brother in your prayers, as he is still in Iraq.

We have many things to be thankful for this year. We are thankful for the health of our family and although our sweet girl does have a horrible disease, we are thankful she is relatively stable for the time being. And despite being sick, we are thankful Kylie is the sweetest little girl we have ever met. We are thankful for the laughter Ava brings into our lives. God gave us this special blessing at the time He knew we would need it the most. We are thankful for our wonderful, supportive family, who thinks nothing of dropping evverything they are doing if we need them right then and there. We are thankful for the girls to have a wonderful, honorary Grandma Sue. We definately were guided by God a few years ago to buy this house, as the best part of the house was not the house itself but who was living next door. We are thankful for the wonderful friends we have met through this journey, people we probably would not have met any other way. They are the ones who truely make this journey a little easier. We are thankful for our friends that we have known forever, who continue to stick by us on our worst days. And finally, we continue to be thankful for all of you, who continue to follow Kylie's story and lift us up with you kind words and encouragement. We are so thankful to have all of these special blessings in our lives. We hope you all have a wonderful Thanksgiving!

***2008 Step Forward to Cure Tuberous Sclerosis will be held Saturday May 17th at Harriet Island, in St Paul. This year's walk will include a 5K run! More details to follow**

Tuesday, November 13, 2007 12:48 AM CST

***When you check up on Kylie, scroll to the bottom of the entry to see what # visitor you are. Number 500,000 is coming up soon and we would love to know who it is! It's hard to believe so many of you continue to follow our sweet girl***

***2008 Step Forward to Cure Tuberous Sclerosis will be held Saturday May 17th at Harriet Island, in St Paul. This year's walk will include a 5K run! More details to follow**

Hi all. We have been staying busy as usual. The girls spent the weekend w/ Grandma Karen, while Neil went hunting and I spent a relaxing weekend w/ "my girls", (my 7940 girls). This incredible, funny, inspiring group of women are such a huge part of my life and I want to thank them all for creating some unforgetable memories.

Ky and Ava have been doing pretty good. Ava looks like she has been in a battle, from the black eye she got from falling off the chair, to the split lip she got from the corner of the counter, to the buldge on her forehead from last night's fall. She is a mess. Ky's seizures have been better. We have really not seen any of her typical seizures but have been seeing staring ones a few times a day. She finished the gabatril on sunday morning, so depending on how she is doing at the end of the week, we'll start the vigabatrin then. She has been staying busy w/ her therapies and with school.

We took the girls to dinner at the Spaghetti Factory last night and then we went to the Macy's display downtown Minneapolis. The theme this year is the Nutcracker. Although it seemed shorter this year, it was still super cute. The girls loved it and even sat for a picture w/ Santa, (although they were sitting on mom and dad's laps at the time!) Ava did fall smack on her forhead, (long story, including dad not catching her), =) but we had a good time overall. Ky has dance tonight and Ava has ECFE. It's hard to believe Thanksgiving is next week already! I will try and update some new pictures in the next few days. Thanks for checking in!!

Tuesday, November 6, 2007 1:27 PM CST

I am finally getting a few minutes to sit down and update. We have been so busy lately and things just don't seem to be slowing down. Here's a recap of the last week~

The girls had a blast on Halloween. Trick or treating is truely Ava's calling. In the 9 houses we hit in an hour and a half, she tapped on each one, gave a "tickteet" and grabbed 2 fistfulls of candy. She did not enjoy putting any back but did say "tanku" to almost everyone. Kylie was more "lady like" and used better manners. She has for the most part given up her afternoon naps, so I was expecting a huge meltdown, but she really suprised me and did great. We visited Gma Karen and then Gma Sue at work, so we have plenty of candy, which unfortunately, I have mostly been eating.

Neil was gone hunting all weekend, so we had lots of quality girl time. I took Ky to all her therapy on friday, then back to the drs for Ava, as her ear infection was not clearing up. After 2 hrs in the drs office, including some random kid sharing his sucker w/ Ava (yuck!), I braved a solo trip to the Children's Museum w/ both girls. Elmo and gang happen to be there right now, so we had to go see them. The girls loved it, although it was a little hard watching them run in 2 different directions. We headed out early, as some creepy guy kept eyeing Ava up and making me extremely uncomfortable. We had dinner at Gma Karen's and then we headed home for meds. On Saturday, we met my friend Jody and baby Natalie for breakfast. We then made the mistake of taking the 3 girls to a craft fair, (will not repeat that one) and then headed to the mall for some shopping and lunch. We got home in time for naps and had a relaxing day at home. Kylie talked to my mom on the phone sat night and for the first time, I got to truely see her as a regular 3 yr old. Usually she'll listen on the phine and say a word or 2 before pushing the buttons but on sat, she talked for about 20 min and was completey engaged in the conversation. She said more words in that 20 minutes than I sometimes hear her say all day. It was wonderful to hear. Kylie enjoyed it so much that she had a huge melt down when hanging up. Gma felt guilty, so she came for a midnight sleepover, (long story as to why Ky was still up!) Sunday rolled around and I made th mistake of taking the girls grochery shopping. They were absolutely horendous. Yelling, screaming, crying, pulling each others hair, pulling things off shelves- you name it, they did it. I scolded Ava for something and she started hissing at me. It was great. Especially so, when some woman came up to me and told me I was a "hero" for basically not beating my kids for being so naughty. Never a prouder moment in motherhood. My mom watched the girls for the afternoon so I could do some power cooking for the week. I ende up with about 10 hrs total of sleep for the weekend.

I took Ky to the eye dr yesterday, which was another horrible story but basically, we have to go back in 3 months and see if she needs glasses. She is farsighted in one eye and has an astigmatism in the other eye, which pretty much balance each other out. However, one eye has a weak muscle and he is worried her eye may start turning out some if we don't fix it. But, we'll see. It's hard to imagine how he culd tell anything with Kylie kicking him through the exam but I guess that's why he makes the big bucks. He also told me that vigabatrin is a "toxin to the retina" but the damage happens to a low percent of people. That's great, unless you are one of those people. I am just trying to get brave enough to crack open the first box of vigab.

Ky got her flu shot this morning and had speech and school. We have a busy week of therapy, more dr appts and school. Neil is heading out of town again this weekend, while I am getting some much needed R & R w/ my 7940 moms. I can't wait to see my Soul Sisters!! The girls are hanging out w/ Grandma Karen, which we really apperciate!

The seizures are still hanging in there, although for the most part, have been fewer. We will probably start the new med this week. Have a wonderful week!

Tuesday, October 30, 2007 1:04 PM CDT

Hi all. What wonderful weather we are having! I love it! Anyways, for the most part, all is well here. I worked all weekend, so the girls got some quality time w/ their daddy, as well as with their auntie. We have yet to start the vigabatrin. There was a little confusion about who we were actually supposed to be calling for the dosage, when to start, etc. We have it all straightened out now but ironically, the seizures have slowed way down, (knock on wood!!)I only so 2 yesterday and none so far today. We are going to give it to the end of the week and see if she is still doing good. Maybe the Keppra finally is working. She is on the maximum amount she can be on, so we have no room to increase it if needed. Our fingers are crossed!

I brought the girls in for their flu shots yesterday but we left instead w/ antibiotics. They both have had junky noses for 3 weeks and sure enough, they both have ear infections. The problem is that their tubes in their ears are not working properly and their ears were not draining. Ava's eardrum was close to rupturing. Everytime either of them get a cold, it seems to settle in their ears and sinuses. I think we are in for a long winter! The girls are now 2 lbs and 2 inches apart. I have a feeling they will be the same size by summer. I have been getting alot of, "Are they twins?" and "How close in age are they?!!" comments lately. They are the best of friends and I love watching them together. Ava's favorite thing to do is to steal toys from other kids and bring them to her big sister. She simply adores Ky, or "Dylie".

Kylie's therapy is going well. Her speech therapist realized Ky answers questions that you ask her, just sometimes 5-10 minutes after you ask. So, they are going to wait for her to answer, instead of prompting her. I have a feeling they will have quiet sessions for awhile! Ky's teacher today said she was talking all day and they were trying to write down everything she was saying but it was hard to keep up!

Kylie has PT in the morning and then we plan on heading over to Grandma's to see her big Halloween set-up. We are visiting Grma Sue at work tomorrow, so her crew can see the girls in their costumes. We'll probably trick or treat around our house tomorrow night, visit Grandma and then get together w/ friends. Auntie Kari is handing out treats at our house. She is heading off to India for 3 weeks on thursday, so we plan on seeing her a bit tomorrow. Neil is getting ready for hunting, so the girls and I are preparing to have lots of girl time for the next 3 weeks. It's hard to believe the holidays are right around the corner! We hope you all have a fabulous Halloween!

Wednesday, October 24, 2007 2:37 PM CDT

**UPDATE Fri Oct 26th**
The vigabatrin came in the mail yesterday and we are waiting (and waiting!) for a call back from Dr Frost's office, on how much to give Ky. I am assuming we will start it monday, if they call back by then. =) I also want a plan on getting her off some of the other meds, since she will be on 6 seizure meds as of when we start the vigab.

The girls and I went to dinner w/ my mom and sister on wed eve. We were talking to Ky about her friends at school and I asked if Bella (a girl in her class, who slapped Ky across the face a month or so ago), was her friend. Ky gave me a dirty look and shook her head no. I asked if Bella was nice to her and she said, "Nauuu--ghh" (naughty) and started shaking her finger at me, saying "NO!No!" It was pretty funny. We had conferences w/ Ky's teachers and therapists yesterday and told them what Ky said and they said, "Yep! She can be naughty!" Ky is doing pretty good in school. The last big seizure has set her motor skills back a bit. She can no longer stand up in the middle of the room, (she needs to pull up on something) and she is having trouble walking up stairs and llifting her feet. Her gait is stuffled at times. However, she has been matching pictures at school, identifying colors, some shapes and letters, which is great news. Apparently, she is somewhat quiet and shy in class but is more vocal 1:1. That suprised me a bit, since she is a chatterbox at home. Her therapist did say she was very talkative in class yesterday, so maybe it depends on the day. They are going to talk w/ a vision specialist, to see what kinds of things to look for w/ peripheral vision loss, once we start the vigabatrin. Hopefully she won't have any issues but it's a "just in case". I got her appt w/ Dr Ballard (eye dr) moved up a few weeks, so she will be him a week from monday, for an inital exam before we get too far w/ the vigab. The girls will both go in for flu shots on monday too. That's all for now. I hope everyone has a great weekend!

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Our "drug mules" are in Mexico as we speak. =) (I guess I really shouldn't joke about stuff like that!) Kylie's friend, Mary, has wonderful grandparents. They are living in CA for the winter and took a four hour roadtrip today to get our girl her meds! Then, our ped called today and said the board met and decided it was ok to prescribe the vigab. They are hoping it will be our miracle! So, we should have the med by friday, at the latest. If it seems to be working for her, then we will fax the prescription to Canada and go from there. I spoke w/ Dr Frost's nurse yesterday and after about 40 seizures or so yesterday (and another LONG night), they increased her morning and bedtime dose of Keppra. I only woke up for one seizure last night and she had one today when I asked, "Are you ready to take your meds?" Go figure. Pray this med will be the miracle we have been so desperately searching for. If not, Ky will be having the VNS placed mid-November.

Sunday, October 21, 2007 9:04 PM CDT

UPDATE Mon 1255pm~
I knew I would jinx things by posting about the vigab before we spoke w/ Ky's ped again. Her ped's malpractice insurance is reccomending against prescribing vigab, due to the vision issues and they are worried about a lawsuit. She asked me how I felt about the med, in which I told her it would really suck if she lost part of her vision but the seizures long term are so much worse. She is going to have a board meeting w/ her partners tonight and she will let me know what they decide in the morning. I was up w/ Ky about every 20 minutes last night, watching her seize. So, I'm an emotional basketcase this morning. Sighhhhhhh.

Good evening. I hope everyone had a great weekend. I got the girls down early tonight and have been enjoying some peace and quiet. =) I talked w/ Kylie's ped last week and asked her if she would be able to prescribe vigabatrin for Ky. She said, "Honey, I'll prescribe whatever you want!" (Within reason, I'm sure!) She was going to talk over how to go about prescribing it w/ Dr Frost. She left a message for me on thursday, so I am hoping to talk w/ her about it tomorrow. Crossing our fingers this med will be the miracle we have been in desperate need of. I have been doing some more research on the drug, which has made me a little more nervous. The reason vigabatrin is not FDA approved in the US is because it can cause peripheral vision loss. It can also can color blindness, for the colors blue and yellow. I did find many cases where this has happened in children. I have found a few studies that have shown that the likeness of having vision issues is as high as 30nd the damage can start as early as a month into therapy. However, the tests available to determine if there has been damage is not very reliable until the child reaches a cognitive age of 9 years. So, I guess we are going into the gambling business. If we don't get these seizures under control soon, the long term damage could be devestating. Do we risk trying a med that could damage the one organ (her eyes) that she probably won't have issues with from the disease itself? The articles also stated that although vigabatrin is very effective w/ infantile spasms (which Ky never had), it is also the drug of choice for children w/ tuberous sclerosis, even for other seizure types. So, I do think it is worth the risk. I just hate that we have to make these decisions for our daughter that could effect the rest of her life. And to think, I used to think our toughest decision would be sending her to Catholic or public school! We got our approvable letter for the VNS, so that is still an option. I'm just leery of putting the VNS in, since it would mean she would never be able to have a full body MRI again. Some days I wish I had a crystal ball to help us see what the best decision would be. Other days, I'm sure knowing the future would just scare the crap out of me.

So, I if the ped is still on board, we will go ahead w/ the vigab. We then need to figure out where we are going to get it. Most likely, we will get it from Canada. I think the Keppra will soon be crossed off our list of meds, since the seizures are raging. Evenings seem to be the worst. She had 4 in the bathtub alone tonight and I am reminded why she will probably have her mom w/ her in the bathtub until she's 50. I turned for a minute and when I looked back, her face was under water, seizing again. Although she has not had any big seizures since coming down in the gabatril, her regular seizures are quickly getting out of control.

The girls went to music class w/ grandma on thurs, while I worked. On friday, Ky went w/ Neil to therapy and I took Ava to the local Halloween party, where she won first prze in the costume contest! We left the lamb costume at home, since the sheep cannot travel w/o her "Peep". We pulled a lady bug costume together last minute and she looked so cute! She was up in front of a gym of people, clapping for herself. Her friend Noah took 2nd place, looking darn cute in his dragon costume. I worked friday evening and then on sat, the project from hell started. My dad and Neil put an egress window in our basement, which will hopefully be totally completed by Christmas. =) While they were busy w/ that, I met up w/ friends and took the girls to the Como Zoo Boo. Ky was completely overwhelmed in the beginning, by the loud music, costumed characters and the chaos in general. She climbed back into the stroller and stayed there for most of the time. Ava was scared of the charcters at first but after she realized the would give her treats if she went up to them, she would open her bag like a pro, then run away. She walked the whole way and even carried her heavy bag the whole time. She freaked everytime I asked her if she wanted me to carry it. She is going to be a natural for Halloween. We ran into a family we recently met towards the end. Their son, Will, is 5 mo and was recently diagnosed w/ TS. He looks great and couldn't be any cuter. After our long night, the girls treated me to sleeping in until 930am this morning. It was great! Ky hung out w/ my mom this afternoon, while Ava and I hung out w/ Auntie Kari. My mom and Kari are going to FL this week and then Kari leaves for India the following week. She will be in India for 2 1/2 weeks, so we were getting some girl time.

We have a full week of therapy and school for Ky. Hopefully we will know more about the vigabatrin soon. Please pray this drug will help get our girl out of the daily hell she has been living in. Thanks for continuing to check in on us!

Tuesday, October 16, 2007 9:43 PM CDT

Good evening. The seizures are back, in full force. I decided I really don't want to know how many she is having, so I quit counting. I worked friday eve and a double on saturday, so I don't really know how many she had over the weekend but she had 10 sunday eve between dinner and bedtime and then had a few more in her sleep. We decreased the gabatril again yesterday, so she is now on 1/3 of the dose she was on when she was having the "big mother" seizures. Thankfully, (knock on wood), she has not had a big one since she was admitted to the hospital but all her little ones are back. I talked w/ Dr Frost's office today and we are going to increase her Keppra in the morning. I also need to call the ped in the am about the vigabatrin. Fingers crossed she will prescribe it. We really want to try it before we go ahead w/ the VNS. Although she is having more seizures, her walking is back to about as good as it has ever been, she has an almost constant smile on her face and she is talking more. If you ask her where Uncle Andy is, she says, "Eye-ak!" (Iraq). It's pretty cute. Ky is off school this week for MEA, which is a nice break. She did have a temp of 100.1 today but doesn't have any symptoms of being sick, aside from a slightly runny nose. I hope she isn't coming down w/ anything.

Neil and I took the girls to the pumpkin patch on saturday, which was a complete disaster. It was one of those, "Are these really OUR kids??!!" moments that I hope we don't repeat anytime soon. They were both whining and crying for most of the trip. The freak-out queen herself was in full force. Ava didn't want to ride in the wagon- she wanted to walk. But if a pumpkin vine touched her leg, (about every 2 feet), she wanted to be carried. But then she saw Ky in the wagon, so she wanted to be in the wagon too. I think everyone in the pumpkin patch knew her name by the time we left, (which was pretty quickly!) So, no cute pics of the girls together getting their pumpkins this year. Ky didn't even want to get out of the wagon.

Sunday we just hung out at home, watching movies and laying low. It was nice to simply do nothing. We kept Ky home from dance tonight and went out to dinner w/ Grandma, Grandpa, and the aunties tonight. Ky has PT in the morning and 3 hrs of therapy on friday. We are doing some home immprovement projects this weekend and are going to try and get to the Zoo-Boo at Como Zoo this weekend. Hopefully this weather will clear up soon! Have a great night and thank you for continuing to check up on our sweetie!

Friday, October 12, 2007 8:57 AM CDT

Good morning. The sleep study results are back and Ky passed, so we can proceed w/ the VNS. Although she had very few seizures over the weekend, she is back to having 4-5 or so a day. Not sure if they will increase in number or not but we can handle the few she is having. They are all pretty quick. She made it to school this week, as well as to all of her therapies, which is great. Her teacher said she is talking more in class, knows the names of her therapists and is talking a lot at home. Yesterday she said, "Ghetto!" (Thank you Auntie Laura!) Her walking is much better too. She is still not where she was at but at least she isn't walking sideways and falling every 2 steps. She is done w/ her antibiotic, so hopefully she stays healthy. Her PT doesn't think she needs to go to the gait clinic, so we are going to cancel that. I think we are still going to try and get the vigabatrin, so I'll try and get in contact w/ her ped next week.

Ava continues to do well. She finally learned how to stand up in the middle of the room yesterday, (no idea what that was all about!), so she can be offically discharged from physical therapy. She is talking all the time and is a riot to watch. She loves her big sister more than anything in the world. As soon as she sees Ky in morning, she yells, "Dylie!" and runs to give her a big kiss.

We arr hoping for a quiet weekend. We are going to try and get our pumpkins, since last weekend was so icky. Our golden retriever, Bailey, got in a tangle w/ a porcupine at the cabin last night, and was a complete mess. She has to go in to the vet later today- never a dull moment around here.

Special prayer requests for my cousin Ryan's best friend, who was in a serious car accident last week. His family is requesting as many prayers as they can get~ www.caringbridge.org/visit/stevedevarennes

Monday, October 8, 2007 9:05 PM CDT

As luck would have it, our pediatrician is on vacation this week. I spoke w/ the dr who is covering for her, (who is very familiar w/ Ky), and she is getting the ball rolling on a few things. She contacted the sleep study people and was told the person who needs to read the sleep study is on vacation for 2 weeks. She told them that was not an exceptable answer and that they better find someone to read it. So, we are waiting. She is also faxing orders over to Gillette, for Kylie to be seen in the Gait and Motion Analysis clinic. I'm not exactly sure what it all entails but by hooking Ky up to some sort of electrodes/computer thing, (don't know the technical term!), they can hopefully give us a better idea about why Ky is having walking issues and how to best correct these issues. Ky walked a little better today but her tone sucks and she is falling a lot. She is like Gumby on a muscle relaxant. Not a great combo. The ped also ordered ear drops for Ava, so we didn't have to bring her in. I also spoke w/ Dr Frost's office and they are very pleased w/ the seizure control Kylie has had the past few days. We only saw 1 today. We decrease her gabatril again on the 15th, so hopefully the moon won't be full that day. We'll check in again w/ them if things start to go down hill or when we get the sleep study results, which ever comes first. If Ky continues to do well, we will hold off on the vigabatrin and VNS. I also talked to Kylie's teacher today and exxplained her gait issues. I told her she is going to need extremely close supervision and maybe even someone 1:1. She said they have enough extra people this week, so it shouldn't be an issue. Hopefully I won't get a call that she fell and hit her head again. But, her teacher is pretty great, so I don't think it will be an issue. I think she will have to sit dance class out tomorrow though.

I do have to admit we have our sunshine back. Kylie has been so full of smiles, very talkative and fun to be around again. =) Gma Sue and I took the girls to the mall tonight and we caught Ava making faces at herself in the mirror. It was pretty funny. Ky has speech in the morning and then school. Hoping for an uneventful day! Thanks again for checking in and for all of the prayers. We really appreciate them!

Sunday, October 7, 2007 10:13 AM CDT

It's been a pretty quiet weekend around here. The girls and I have been catching up on mail, laundry and cleaning. Actually, for every one thing I put away, they take two more things out. =) Ava is mopping the floor right now, so maybe some things are rubbing off on her.

Kylie continues to have an extremely difficult time walking. This is the first time she has ever lost skills after a seizure but we are hoping some of it is from being in bed for 4 days. She is very unsteady and yesterday, it seemed like she was in pain with each step she took. She does ok if she has something to hang on to but there have been numerous spills this weekend. Seizure wise, she is doing a lot better, (and now that I said it out loud, I'm sure things will change!) She has not had a big seizure since last friday and we only saw 2 of her regular seizures yesterday. We doubled her evening dose of Keppra on friday night and hopefully that is helping. I have to call Dr Frost's office tomorrow and see where we are at w/ the gabatril wean. Ky has been in such a better mood the past few days as well. Lots of smiles, more taking and she has even learned a few new letters. Her OT saw her on friday and feels she is much weaker on her left side since she last saw her. Hopefully that will get better w/ time.

We have heard many encouraging things about the vigabatrin from many people. I need to connect w/ her ped tomorrow, so I will keep you posted what we decide.

Ava has an ear infection, which I think is the most exciting thing that cropped up this weekend. I took the girls out to breakfast yesterday, to meet their new friend Natalie. I quickly remembered why I do not take them to eat by myself very much. Ky could barely walk and Ava was having a great time running away from us, checking out what each table had to eat. We are going to meet Grandma in a bit, so we should get going. I'll update after I get a chance to talk w/ the drs. Other than that, hopefully things will continue to stay quiet around here!

Wednesday, October 3, 2007 10:29 PM CDT

After having a fairly good past 2 days, Ky is not doing so hot. Still no big seizures but she is having quite a few staring/goofy smile and some regular complex partial seizures. She has slept off and on for most of the day and is just not feeling herself. We saw Dr Frost today and after quite a few mishaps at the hospital, we are feeling better about things. When Ky was admitted, we thought her gabatril level was too high. They drew her labs but instead of drawing a gabatril level, they drew a neurontin level, (which she is not even on). No one picked up on it the entire time we were there, which is simply frustrating. Now that we have weaned the gabatril, we wouldn't have an accurate picture of what her level was at the time she had that big seizure. She is on an antibiotic for an ear infection she never had, yet has a sinus infection when we were told her CT was clear. Her ped started her on a cream for the rash on her cheeks and arms and when we were discharged, the nurse sent it down to pharmacy to be relabeled. When we got home, we noticed we did not have the cream with us. My mom went back to the pharmacy and was told an order was not sent down w/ the cream to have it relabeled. When they called the floor and spoke to the dr to get him to reorder it, he told them he would not reorder it because "she doesn't really need it anyways". Apparently, the skin specialist we saw at the U of MN was just pulling our chain. I was so peeved by the time we got home. A few other things happened that I won't go into but I had enough of cocky drs to last me a lifetime. I talked w/ Dr Frost about a few of them today and it reinforced why trust our daughter's life to him and no one else. Enough of my ranting. We do have to thank the wonderful nurses on 7940 for again taking such good care of our girl. And to you other 7940 moms~ our favorite housekeeper is back!!! We are going to double the Keppra this weekend and wait a bit on weaning the gabatril. This way, if her seizures get worse, we can relate it to the Keppra and not the gabatril wean. They can take her off the Keppra super fast, so it is a good med to work w/. It can cause aggression, which we will be watching for and hoping not to see.

If Ky continues to have big seizures, they are going to do an MRI, sooner than later. They want to make sure there hasn't been any changes in her brain that could be attributing to the seizures. They would also get the CT of her kidneys/pelvic area done at the same time. Dr Frost put in a call to the manufacturers of the VNS, to get an exact date of when it will be available. He heard it may have came out yesterday, which means if Ky's sleep study results come back ok, we can get the VNS scheduled. If she is having true bouts of apnea, we will have to scrap the VNS. Our further plan of action is to try and get our hands on a med that is not FDA approved in the US, called Vigabatrin. It can cause peripheral vision impairment, which is why it is not FDA approved. However, Kylie's eye dr has done many studies on it and would follow her closely. It is considered the drug of choice for TS kids that have infantile spasms, (a severe form of epilepsy). Kylie has never had this type of seizure, typically seen in infants. He is hopeful it will help w/ the complex and simple partial seizures she has been having. He said if it helps, we should see improvement rather quickly. The problem is getting the drug. Dr Frost can not write the prescription, so we have to see if our ped can do it. If not, it is sold over-the-counter in Mexico. If anyone is traveling to Mexico in the near future, let me know! It is not illegal to bring it into the country or to use it. You can only bet a 90 day supply. We could also get it from Canada but we would have to travel there to see a dr and have them prescribe it. There are a few other complicated ways to get it but I won't even go there. Another sore spot is that because it is not FDA approved, insurance won't cover it and it can get pretty spendy. But if it helps our girl, we would do it in a heart beat. Neil can just give up hunting for the next few years. =) I just wish all of this wasn't so darn complicated.

We are keeping Ky home from school tomorrow and giving her another day to rest. Probably a good idea, since she can barely walk. She fell and smacked her head again today. Her eyes are sunken, her face is pale and she looks like crap. We are going to try PT and speech on friday, whcih hopefully won't wipe her out too badly. We were going to head to the cabin this weekend but I think I will send Neil solo and I'll hang out at home w/ the girlies. Ava still has a junky cough and has been pretty clingy. Her mullet is still growing as mullety as ever. I have no idea why her hair won't grow on the side of her head. That is why she is always in pig tails. She has become quite the grandpa's girl lately. She thinks he walks on water. It's pretty cute. During the funeral, she practically jumped over the pew to get into grandpa's arms and snuggled on nice and quiet w/ him.

Sorry for the long update. Thank you for all of your prayers, enteries, phone calls and visits. Walking this sucky road is a little bit more bearable w/ all of your support.

Tuesday, October 2, 2007 7:31 PM CDT

We are home and after a 3 hr nap by all of us, feeling better. Ky is doing ok. She did have 10 seizures during the night and has had quite a few mild ones during the day. This is somewhat discouraging, since all of her regular seizures were gone before we went in the hospital but she has not had a bigger event since friday. I guess it does not matter she is having these big seizures, since she has "epilepsy" anyways, even though not breathing is a little bit of a concern to us. She is walking now, although she is very unsteady and seems to walk a bit sideways. She is eating but still not drinking. The PCA had to syringe a carton of milk into her this morning. This is a huge concern to us, since we are suspecting being dehydrated is what got us into this mess in the first place. Her tongue is white, which her ped called "milk tongue" or a sign of dehydration. She is staying on oral antibiotics, which seemed to perk her up after she spiked a high fever the other night. It's more of a preventative measure, since she doesn't quite have an ear infection and just a touch of a sinus infection (long story). We have a hugely newfound appreciation for Dr Frost and see him in the morning. Not sure if he will have anything to add or change but we do plan on figuring out when we will schedule the VNS. Huge thanks to Shannon for sitting w/ Ky last night, so we could go to my uncle's funeral. We left early, since I wasn't feeling so hot. After a good sleep, I was feeling better this morning. We went to the funeral today and as soon as Neil brought Kylie into the church, she saw Ava and got all excited, yelling, "Na-na!!!" (what she calls Ava). I'll update after more tomorrow after talking w/ Dr Frost tomorrow.

Tuesday, October 2, 2007 12:31 AM CDT

Maria wanted me to let everyone know that Kylie was discharged this morning. She will update with more information when they get home from Jerry's funeral.

Sunday, September 30, 2007 9:29 AM CDT

UPDATE 1120PM~ Ky did ok until tonight and then threw up again. She had small seizures during the day but still not a big one. She still can't quite stand up, is still not eating or drinking. I got a few bites of frozen yogart in her, although she kept telling me, "NO!" She was not happy about getting her EEG wires fixed and told the tech to "GO!" I am hoping tomorrow we can try and get her out of bed a little bit. She really needs to start eating and drinking too. More tomorrow...

UPDATE 215pm~ The resident came to see Ky after her temp got up to 102.7. He thinks she has an ear infection and will start her on another antibiotic. She has blood cultures pending from last night, so we will see what happens. She got her first dose of Keppra a few hours ago. She has been sitting up in bed, reading her books. We had a visit w/ Linda and Tegen today and have otherwise been laying low. It was hard to leave Ava today~ she was crying and looking out the window as I was leaving. We are trying to keep her home with her stuff, instead of carting her all over, to keep things a little bit normal for her. More later~

Things seems to be getting worse instead of better. Ky threw up again last night, so they had to take all of her EEG wires off, wash her hair and hook her back up. I came home with Ava last night and Neil stayed w/ Ky. I guess they had a bad night. Ky threw up all night and had tons of her regular seizures. She has a fever this morning, so we are now quarantined to the room. I have no idea what is going on w/ her. I am hoping she has one of her big seizures soon, so we can then un-hook her. I am going to go down and switch places w/ Neil, so I'll try and update later.

Saturday, September 29, 2007 9:10 AM CDT

UPDATE Sat 7pm~
Ky is hanging in there. She only had a few seizures today that were very small. She is still a little out of it, although much better overall today. We are a little concerned her foot seems to be turning in but the neuro saud she would re-evaluate in the morning. Ky got an hour nap in today but is ready to crash pretty soon. She still can't stand alone but will bear some weight if we help her. She has been good, sitting at the table for most of the day, reading and playing w/ ponies. Although she ate a lot for breakfast, she hasn't been interested in eating much the rest of the day. She is still not drinking, so she is still getting IV fluids. The neuro on today confirmed she won't do any med changes this weekend, so we'll see what monday brings. Ky is being loved up by all her favorite nurses and it is so comforting being in a place where they really know her. I don't have to explain anything, check-up on anything- they just get it and do a fantastic job. We had a visit from Eileen and Kim today- thanks for stocking me up w/ caffiene! Also, from Jack's mom and dad, Steph and my family. Neil and Ava just got here a little bit ago, so I'm going to go hang out with them. More tomorrow~

Kylie is awake and doing better this morning. She finally stopped throwing up last night around 10pm and would open her eyes every so often and give us a wink. She is talking much more this morning but still can't stand up. She is sitting a little better. She had a chest x-ray last night, which looked good. We have been a little concerned she was aspirating, since she was choking everytime she drank this past week. She didn't drink anything at all yesterday and still won't drink this morning. She did eat a lot this morning, which is a huge improvement. We have been seeing little seizures this morning but nothing big yet. When we came in, they were concerned she was in non-convulsive status but the dr said she wasn't and that her EEG looked pretty good. From my "non-professional eye", her EEG looks 100x better this morning than it did yesterdy. We are waiting to get her med levels back, which may take a day or 2. They don't plan on any real med changes until monday and plan on giving Ky the weekend to detox, so to speak. We have not seen the neuro this morning but her ped stopped in to check on her. I'll try and update again later. Thank you for all your thoughts and prayers!

Thursday, September 27, 2007 11:02 PM CDT

***UPDATE Fri 540pm***
On the way to the hospital, Kylie really started seizing, worse than we have ever seen. I gave her some valium but she stopped breathing for a bit, so we pulled over and called 911. The ambulance took her to the hospital and she was loaded w/ phospheynotion (sp?. They took her to CT. to check her head and sinuses. Both looked ok but she started vomitting in CT and has been doing so every 15 min or so since then. The med load didn't agree w/ her stomach. We are waiting for some zofran to come up. They are hooking her up to EEG right now. Her pupils are reactive but she really hasn't woken up since this all started. Dr Doescher is going to wean her off the gabatril and maybe retry Keppra, the very first seizur med she was on. He also meantioned vigabatrin, which is mainly used in TS patients w/ infantile spasms. She never had these, so we were never on that med. It is not FDA approved in the US but is in Canada. Our insurance wouldn't cover it, so it would be spendy. But, we will do whatever needs to be done. I just want my sweet girl back, not sedated and drugged out. Sounds like we will be here for awhile. We can't have our cell phones on, so if anyone needs us, call the room~ 651-241-7913, room 7945-2. I'll update more as we things happen. Keep praying!

*******UPDATE Fri 1230pm*****
Kylie has continued to get worse, so we are on our way to the hospital to get admitted. I'll post more later when I get a chance.

:We have been having another rough week. Ky got loaded 2x on tues, had her sleep study that night, was crabby all day yesterday and in a "drunkin fog", woke up happy today, so we sent her to school. I got a call from her teacher at 1030, telling me that Ky took a spill and fell flat on her forehead. She was acting sleepy after and her eyes looked "funny", By the time I got there, she was having fun with playdough but when I picked her up, her head was slightly shaking. She crashed out on the way home and slept for awhile. She had her 3 yr checkup this afternoon, during which she was whiney and then fell asleep. Our ped took one look at her and said, "This child is way over medicated". She is trying to get in contact w/ Dr Frost's office, since they don't seem to think my concerns about her not being able to walk well, sleeping all the time, picking at her belly button and eyes and being very irritable are valid reasons of concern. Our ped thinks the picking & crabbiness are side effects of the recent med increases and the sleepiness/not walking well are a combo of the seizures and all the meds she has been given. I then start to question if all this shaking is truely seizure stuff or side effects from med. Our ped is also contacting the neurosurgeon's office, to see when exactly the VNS is going to be ready and if there is a hold up somewhere, which may make us decide to go with the older version, since we need to do something soon. Our truely love our ped- she will get these things done for us. Kylie also has an ear tube that is blocked, so she will start some drops and we got a few prescriptions for her rash on her cheeks and arms. Ava got a shot today, screamed and gave the dr a dirty look. As soon as we got home, Kylie really started shaking, couldn't hold her head up and was super whiney. I loaded her and the seizure stopped pretty quickly after that, which was a nice suprise.

Last night/early this morning, my dad's brother passed away suddenly from an abdominal aortic aneurism. The girls loved their uncle Jerry and they had a great time during dinner with him at the golf tourney. He is going to be sorely missed. We are just waiting for my cousin BJ to get in from Iraq for funeral arrangements. Please pray for strength for Jerry's family during this difficult time.

Ky has therapy at 8am, so I better turn in.

Sunday, September 23, 2007 11:02 PM CDT

**UPDATE Tues 130pm~ Kylie is having a rough day. She went to speech this morning but had to end early, since she started to seize. Luckily, she fell asleep on the way home and slept for a few hours, so we avoided loading her. During lunch, she started up again and continued, so I loaded her. After 20 minutes or so or continuing to seize, I loaded her again and now she is out. I talked w/ Dr Frost's office again and there is really not much more they can do. We are increasing her gabatril again, which has nearly eliminated her regular seizures but is possibly the cause of these big ones. She is tired, sleeping good chuncks of the day, missing therapy and school, is having difficulty walking when she is no seizing and is just not the same. She is supposed to go in for her sleep study tonight at 9pm, so hopefully they will get the data they need to we can schedule the VNS. The drs office also ordered more valium in case we need to load her again. So, no real fix. We just keep drugging her until she passes out and hope she wakes up ok. I hate the life she has to live, I hate this disease and I hate seizures. Whoever came up with the saying that God won't give you more than you can handle is full of crap. Come spend a day at our house and you'd be running as fast as you can.

***************************************
I have no idea where my earlier (long) entry went, so I'll try again. We want to thank everyone for the birthday wishes and prayers for Kylie. She was able to spend her 3rd birthday seizure free and in a great mood for most of the day. Here's a recap of the past few days~

On wed, Ky started off the day with a big seizure and missed PT. She slept for about 3 hours, then did ok. I talked w/ Dr Frost's office and they said she needs to have the sleep study doen prior to the VNS, especially since the VNS itself can cause issues with respirations and if Kylie is already having apena issues, it may not be a good fit. We are trying to get that scheduled and should know more this week. Ky perked up later that day and even helped me make cupcakes. She loved to mix the batter.

On thursday, she woke up bright and happy for her big day. I brought her to school, where she was a bit clingy and even shed a few tears as we walked in the bldg, which is unlike her. I brought her in the classroom, where she went right off to play and was greeted with a hug by her friend, who then proceeded to slap Ky across the face. Not exactly the greeting Ky had in mind. We later celebrated with cupcakes and presents and spent some time in the jumpy. My mom picked the girls up for KinderMusik, while we got ready for her party. The girls enjoyed class, although Ava's favorite part was wipping her rhythm sticks at the other kids. Despite tornados and a near wash-out, most of the kiddos made it to the party and had a good time. Ky did a pretty good job keeping up with them.

On friday, we headed up to Duluth, where we stayed at a waterpark/hotel. Everything was going pretty good, until we were about to get into the water. Ky started shaking pretty bad, so she went back to the room, while Ava enjoyed the water. After sleeping off the seizure for a few hours, Ky was doing better. We went out to lunch and just as we were finishing up, Ky started shaking again and this time the seizure didn't stop, so we had to load her. We ended up walking around Duluth, while Ky was passed out in the stroller. I can't tell you how many people made comments like, "Whoa! She sure looks like she had a good time!" or "She sure looks passed out!" Yeah buddy- if only you knew. That's what a 3 yr old on drugs looks like. My great idea of taking pics of the girls by the lake was pretty much ruined, so most of them are of Ava. The family pic of the 4 of us has Ky passed out next to us. She slept it off for a few hours and we then went to the aquarium when she woke up. The girls loved the fish but especially the otter. That night, my friend Nena, as well as her cuties Griffin and Reese, came to visit. They brought some goodies for Ky and a super yummy cake. We swam for awhile, then had dinner. About 15 minutes after dinner, Ava broke out in hives, so I made a quick trip to get some benedryl. She looked much better after that, although she was wired afterwards. Now we need to figure out what she is allergic to. We got home this afternoon and the girls crashed for 3 hours. We have a busy week full of school, therapy and dr appts. Please keep the prayers coming for our girl. Although she has been having very few of her typical seizures lately, these "saturday seizure" have been wiping her out. A little less sparkle, many more tears and an unsettled feeling that the seizure monster is winning his battle. Ky is exhausted and quite simply, so are we. Also, extra prayers for my dear friend Jody, who is going to have her baby tomorrow. We can't wait to see out new little girl!! Again, thank you all for your wonderful support. It means so much!!

PS Kylie is now "famous"! If anyone gets the donation request letter from the TS Alliance, notice whose pic is on the envelope? Look inside and you will see Kylie's story, as well as many of her cutest pics!

Thursday, September 20, 2007 8:12 AM CDT

Happy 3rd birthday my sweet girl!!! You have brought so much joy into our lives. You have taught me to be a better person and to not take anything in life for granted. You are so beautiful, both inside and out. Even on the worst days, I look into your beautiful blue eyes and get strength. You are so brave and have taught me the meaning of courage, all the age of 3. I love you more than I ever thought I could love a person and I thank God for every single second He lets me have you in my life. I love you, sweet girl. Have a wonderful birthday.

Love Mom

PS Happy 4th Anniversary Neil. I could never do any of this without you.

Thursday, September 20, 2007 8:12 AM CDT

Saturday, September 15, 2007 11:57 PM CDT

UPDATE Mon 9/17 11pm: I talked w/ Dr Frost's nurse today and we are increasing her gabatril in the morning. Hopefully it will help but she suspects the gabatril may have actually helped to change the type of seizures Ky is having. She thinks she is having prolonged simple partials, which although not good, better than it could be. Aside from the bigger ones, she is actually having pretty good control on this med combo. However, we aren't 100ure it is from her regular seizure meds or if it's from being loaded. Anyways, they are pushing for us to do the VNS surgery sooner than later. The new model should be out anytime but if it is not available by the end of the month, we need to consider doing the older model. We can't go up any further on the zongran or felbatol, especially since she is so skinny and not gaining any weight. Her appetite has taken a nosedive. Whether it is from the meds or from being just plain picky, I'm not sure. Dr Frost's office is very concerned about the length of her seizures and the fact she was still having so many of her regular ones, up until about a week ago. I also told her about her episode a few weeks ago when she stopped breathing. She said none of this sounds very good and she was going to talk w/ Dr Frost this week. On a good note, she thinks the VNS will stop the subtle seizures and she said a lot of kids have become more clear and bright after getting it, since their isn't so much activity going on. She didn't think she would need any blood clotting products prior to or after surgery, which would make things a lot less complicated. Ky had her port flushed today and was in a great mood over all. Yesterday was miserable and she cried at the drop of a hat. A wise woman told me Ky was probably going through w/drawls from the valium and to give her tylenol after loading her. =) And I'm supposed to me the one w/ the nursing degree. =)

The girls and I went out to eat w/ my mom and "Elmo" (my dad) tonight, then to my grandma's and grochery shopping. We have a busy day tomorrow, so I am turning in. Good night!

Right when we thought the seizure monster lost our address, he found it again today. Ky had a great week, having maybe one seizure every other day. My mom picked the girls up this afternoon since Neil and I were both working and while on a walk, noticed Ky's arm and leg shaking. Sure enough, she was having what is becoming an all too familiar big seizure. She gave her some valium and it still didn't stop, so she gave it again and she fell asleep for a little bit. She was drunk the rest of the evening but I don't think she had any more seizures. Neil noticed her leg twitching last night but she fell asleep so he thought it was just muscle stuff. I am starting to get nervous she is having alot more seizures than we are seeing and that they are lasting so long. These new seizures can be so subtle, they are hard to pick up on. I emailed w/ Dr Frost's nurse last monday and she said she would call but we still haven't heard from them. I didn't push the issue, since Ky had a great week but we really don't want to have to worry about our kid being drunk every saturday evening, (at least not until she is 16). It's so frustrating, since the emergency meds wreck the next few days. She can't walk and could barely sit up tonight. Her birthday is thursday, she has a full week of therapy and school, and we are going to Duluth on friday. I just want her to have a fun birthday. Her 1st birthday, she spent the day seizing her little butt off and we had to load her. Her 2nd b-day, she was in her seizure-free stretch but was sick w/ sinus stuff and was super crabby. Lately, she has been seizing and super crabby, so I can only imagine what her 3rd b-day will bring. And I would love to have 1 b-day pic where she doesn't look drugged out. =)

Miss Ava is doing great. I think she is what keeps me sane some days. She is a riot and even though she has a little diva attitude, she can always get me to smile. She hates to see her big sister sad and cries when Ky does or even if we put Ky down for a nap. She'll sneak in her room and try and get up on the bed to snuggle w/ her. She sits in the window and watches Ky go to school, banging on the window and crying for her big sister. Although she still has been calling people Elmo, her current obsession has been trucks, ("rucks") and was thrilled when Gma Sue brought her a little truck today. She did totally embarass me the other day. I had the girls w/ me at Target and we heard a loud moan/yell a few isles over. It sounded like a Halloween toy and the girls were looking all around, trying to figure out what it was. We then saw a older kid in a wheelchair, who was mentally handicapped and was yelling out. They disappeared down another isle and then Ava yells out, "Arghhhhhhhhhhhhhhhhhhhh!", totally imitating the kid. I told her no, which she thought was funny, and kept doing it. I felt horrible! My cheeks were flaming red, as we high-tailed it out of there. Between her yelling and Kylie whining, I'm sure we were quite the sight.

Please keep the prayers coming for Ky. We NEED these seizures to stop. Her little brain needs a break.

Tuesday, September 11, 2007 1:33 PM CDT

I want to take a moment to remember the victims of 9/11 and to thank the brave men and women that continue to fight for our safety, especially my brother Andy and cousin BJ, both of whom are in Iraq.

After a rough weekend full of seizures, things seem to have settled down for Kylie. We haven't seen a seizure since sunday evening. She is in a much better mood too. Dr Frost's office emailed me yesterday and said they would call, so we are waiting to see what they have come up with.

Kylie did start pre-school today and walked in like an old pro. She had OT at school this morning and they are going to be working on her using a regular cup vs a sippy and working on using a straw (which we still can't get her to do). She will probably have PT on thurs and not sure about speech. She has a busy schedule for the fall. Here's a rough version-
Tues- school 9am-1130am, speech 1-130pm, dance/movement 530-630pm. Wed- PT 830-930, Thurs- school 9-1130am, music- 530-6pm, fri- PT 830-930, speech 1030-11am and trying to move OT to 1130-1230. We will definately cherish our mondays! We talked w/ her new speech therapist today and she said although she doesn't know Kylie very well but from her observation, she said she thinks Kylie likes to run the therapy sessions. She is pretty hardcore/no-nonsense and although I have a feeling Ky won't like speech too much, I have a feeling she will get a lot out of her.

We had a nice visit from Jess's daddy last night, (as well as from Jill and Penny!)The girls just adore Jason and he can always get some smiles out of them.

We took the girls on a bike ride when Neil got home last night. The LOVE to go in the bike! I thought they would be zonked for the night but Kylie woke up at 1am, crying and pointing at something. I don't know if she was having a nightmare or what but she settled down after about 20 minutes of snuggling.

Kylie starts her dance/movement w/ Grandma tonight. I don't know who is more excited- grandma, for spending time w/ Ky or Ava, for spending alone time w/ mom! It has been getting pretty bad lately, so Av is hanging out at Grandma's 1 day a week during the day.

We see Dr Frost in a few weeks, where we will hopefully make a plan for the VNS. Keep the prayers coming!

Thursday, September 6, 2007 2:22 PM CDT

**UPDATE Sun 11pm** Ky went about 24 hrs w/o a seizure and then right before dinner, we notices her arm twitching and her head occasionally twitching ever so slightly. Her neck control was a little weak as well. It went on for awhile as we debated whether or not to load her but decided to do it, in case the seizure got worse. Now, I am wondering how often she is really doing this if we are having a hard time noticing it. She gets whiney and is definately not her usual smiley self. But, she is still aware of what is going on during it, still talking and asking for Elmo. I emailed Dr Frost's nurse this evening and hopefully she will get back to me tomorrow. If not, I'll call tomorrow. We need to get things under control. I'm not sure if we will be able to send her to school or not. She had 20mg of valium within 24 hrs, so she may be "drunk" for a day or 2. This last load didn't even knock her out, which concerns me that she os going to start building up a resistance to it and then we are going to be in real trouble. Unfortunately, this all happened as we were visiting a new TS family. As soon as we walked in the door tonight, she had her usual seizure and later crashed in Grandma's arms. Hoping tomorrow is a better day.

UPDATE Sat 1130 pm: Ky had a long day. She had a bunch of seizures yesterday, so we were wondering if something was coming. We had to wake her up this morning at a little after 9am (she is usually an early riser) and she was crabby and back to sleep by 10am. She slept until after 1pm, ate and then started seizing. We loaded her after a bit but 15 minutes later, she was still going. We talked w/ the on-call neuro, who basically told us to load her again and if she stops breathing, call 911 (wonderful plan- I was planning on calling for a pizza). She thankfully crashed as soon as I got off the phone ans she slept for a few more hours. She had a seizure as she was waking up and then was pretty quiet the rest of the evening. This is not the direction we want to be going in as she starts school on tuesaday. We need an MD order for the oral valium by then so she can even go to school, so we will be trying to get things done quickly on monday. Please keep our sweetie in your prayers. We just want her to have a shot at a regular life and these darn seizures keep getting in the way.

Hi all. We have had a long day and just got home. Kylie had her speech and PT eval this morning and did great. She was pretty distractable during the PT eval and I said I wondered if she will be diagnosed w/ ADD in the future. The therapist didn't think so, just that Ky seems very smart and inquisitive, checking everything out. She will start PT at this new place, 2x a week, for a total of 2 hrs a week. She basically has no abdominal muscles and that is why her gait is so crappy. The PT tried getting her to jump on the trampoline, until I told her she has zero jumping skills. She picked up on that pretty quickly. =) Later, she was trying to get Ky to climb up a mesh wall and if looks could kill, the PT would be dead and buried. Ky was glaring and looking at me like, "Is this lady kidding me?"

Her speech eval went pretty good too. She actually did almost everything the therapist asked and was impressed with how many words she can say. We are going to be working on more spontaneous use of words, as well as getting her to talk in sentences. They feel she needs oral motor therapy (to strengthen her mouth muscles), which we have heard from other therapists, but we have also heard from quite a few that type of therapy doesn't do much. She needs to finish her speech eval next week and then we will decide which place to send her to for speech.

We saw the ped this afternonn, due to the horrible rash Ky has on her poor little butt. She has a strep infection (ouch!), so she is starting on oral antibiotics. She is also going to get set-up for a sleep study. She had one in Jan of 06 and passed but she was up during most of it, vomitting and ended up getting admitted to the hosptial that morning for an extended stay, so we don't know how accurate it was. Anyways, a few nights ago, I woke up at 3am from a dead sleep. I had gone to bed late and had been super tired, so I don't know if it was mother's intuition or if I had some angel babies whispering in my ear. I sat up and thought, Kylie is not breathing. Sure enough, I put my hand on her chest amd after about 15 seconds of not breathing, I shook her hard and she started again. She was not seizing at the time and it is normal to pause in breathing for up to 20 seconds but I have no idea how long she didn't breath for. And I find it so weird I woke up. Anyways, the dr said with Ky's extensive history, she would feel better if they did a sleep study. So, we'll have to get that set up soon. She has been having a few more seizures in her sleep, so I really have no idea how many she is having in a day.

Ava continues to keep us on our toes. Her new thing is she calls everyone Elmo. Neil walks in and she points at him and says, "Elmo!" My dad walks by and Ky says "Papa!" (and plugs her nose, since Grandma taught her beer is stinky, which my dad does not find very humerous!) and Ava points to him and says, "Elmo!" She was looking down the basement steps yesterday and I said "Is Uncle Ben down there?" and She says, "Elmo!" I say, "No, Ben!" Ava says, "En? No, Elmo!" I give up! =)

Tonight we have Ky's pre-school orientation and then we are going to grab dinner and go to Neil's softball game. We have my reunion tomorrow night, while the girls hang out w/ Auntie Andrea. Saturday, we are going to hang low and maybe try church again. The girls are so bad in church, that we had given up for awhile. Sunday, I am taking the girls to go visit great grandma and grandpa, before they go back to Florida. Sunday afternoon, we are going to a BBQ to meet a new TS family. Their 3.5 mo old baby boy, Will, was recently diagnosed. We will also be joining Mary's family, which is always a fun time.

Dr Frost and Carol have been on vacation, so I'll try and connect w/ the clinic next week, to see what our next med options are. They are planning on weaning the gabitril and I'd prefer to do it while she is still having seizures. It is not working anyways and if we ever get to a point of being seizure free again, it is too heartbreaking to wean a med and have them start all over again.

Please continue to keep my brother Andy, or to the girls, Uncle "Annie" in your prayers. We love you Andy!! Fly safe!

PS Word to the wise~ if your child ever gets dissolvable stiches that are supposed to "dissolve" in 10 days, don't forget about it and wait until 23 days pass. It was "fun" trying to get those little buggers out. I forgot at our ped appt today, so I had to put my nursing skills to work. =) Ky slept through the whole thing!

Sunday, September 2, 2007 6:07 PM CDT

Good evening. What wonderful weather we are having! Not much new on the home front. We met with Kylie's pre-school teacher last week and she seems really nice. She is going to check on our one issue, which is the oral valium. Since the diastat hasn't been working and the oral valium has, we have been sticking with the oral version. The school is not sure if they can administer it. If that's the case, she either doesn't go to school or we sit in the parking lot during school, neither which seem like great options.

We went in for her speech eval last week, which went great and have one more speech and PT eval this week. We also have Ky's pre-school open house on thursday.

The seizures continue on, although they haven't been too long. Ky still has stitches in the back of her head, so she will have to go in this week to have them out.

We have been kind of lazy the past few days and haven't been doing to much. I have worked this weekend but took on-call yesterday, which was a nice break. We spent the days snuggling and watching movies.

I have my 10 yr high-school reunion on friday and not much else is going on. We are trying to get Kylie to tell us she is 3 (on the 20th) but it is coming out more like "teee!".

I'll update more as things come along. Have a great week!

Tuesday, August 28, 2007 1:10 PM CDT

Hi all. Time seems to fly lately and I haven't had a chance to update. Kylie is doing pretty good. She is still having daily seizures, although I think she is having more better days than bad ones. She hasn't had any mpre longer seizures lately, which is good. I think the zonegran increase may be helping a bit. We see Dr Frost again on Oct 3rd, so we will discuss more in detail the VNS. The newer model she will be getting probably won't be available until then anyways. We have a few concerns, such as if she needed to be recusitated at any point, they could not shock her heart if she had the VNS. Not sure if this is true or not but Gma Karen found it somewhere. I have yet to open up the VNS packet or to pop in the video. For some reason, HBO reruns are much more appealing than watching the next surgery they are going to do to my kid.

We visited a new speech therapy place today and felt very comfortable there. They were suprised at how well her speech is, considering what she has been through. She can say pretty much any word, yet at times, is missing the beginning or ending sound of the word. Those of us who spend everyday with her are pretty adapt at "Kylie talk". We have another appointment next week at a different therapy place, to be evaluated for speech and PT. We will go with whichever place feels like a better fit. Last week, Kylie was discharged from PT. While I would love to yell "Whoohoo!", we feel she still has a lot of skills to learn and her trunk needs to get stronger. We are taking her for a second opinion and for fresh ideas.

Kylie's preschool teacher is coming to meet us on friday, after Ky finishes OT. This makes me feel much better about the fall, so I don't feel like I am sending her off to strangers. She seems pretty nice, so hopefully she will have a good year. We have the girls signed up for their classes for the fall. On tuesday evenings, I will take Ava to ECFE, (early childhood family education), where she will be in a group of kids her age. They do art, dance, singing, gym time, etc. It runs through April. We did it together in the spring and she had a blast. Plus, it gives us some much needed 1:1 time. Gma Karen is taking Ky to "movement" class at the local rec center on tues eves, so they should have a great time. Both girls are going to start KinderMusik on thurs eves. Kylie has done a few classes in the past but it will be new for Ava. I'm sure it will put Ava in all her glory, since she is determined to grow up and be the next dancing sensation.

Kylie had her labs drawn last week and had her lead level checked, since we are single-handedly supporting the country of China with our Elmo obsession. Luckily, Kylie's lead level came back at <1, so we should be good in the lead department. We tried getting rid of all the toys that were made in China but then realized the kids had no toys left to play with. The rest of her labs were relatively ok. Her WBC continues to be low and a few other ones were off, which is indicative of a virus.

We have heard from my brother Andy, who is in Iraq< and he is doing well. Please continue to keep him in your prayers.
My great-aunt Ginger was in town over the weekend, and although I missed most of her visit since I was working, it was great to catch-up in the short time I saw her.

Neil and I took the girls to the fair on sat morning, which was a disaster. If we go again, they will ride in seperate strollers, instead of the double jogger. The spent the majority of the day pulling each others hair, stealing each others food and just plain being mean to each other. At the end of the morning, we bought them chocolate chip cookies, which they loved. So much that they were covered head to toe in chocolate. I bet about 200 people made comments about their appearance as we were leaving the fair- one lady even offered me their her wet wipes. I thought Neil was going to have a heart attack- for those of you that don't know him, he is a huge freak about the kids getting messy. I like to egg him on and give them the messiest things to eat that I can find, just to watch his face. I have to remind him getting messy is a part of childhood and it's nothing a little soap and water can't fix. =)

We had a baby shower here last night for a co-worker of mine and tonight just plan on laying low, catching up on some laundry and praying it doesn't storm again tonight. We have a tree in our back yard that is going to go down in own of these storms and it will crash into Ava's bedroom if it does. So, everytime it storms, I wake up and go get her out of bed. She is then wide awake and raring to go. Luckily, Kylie stays in her little drug-induced slumber and misses out on the whole thing. On thurs, the girls and I are going to the fair again w/ grandpa and meeting auntie Kari, (we can walk from our house). We are going to bring them down the giant slide and get more treats. I work again this weekend, so we won't be doing much for the holiday.

Please continue to keep the Olson family in your prayers, as they had a rough weekend with both the anniversery of Drew's death and his birthday. Also, please keep Zoey and her family in your prayers, as they got some difficult news. Still missing and loving our sweet angel Jess and "Come to Jesus" seems to be on everytime we start the car. And as always, continued prayers for our sweet girl, that she gets a break from these dang seizures. Much love to you all~ The Gibbons Family

Sunday, August 19, 2007 1:13 PM CDT

All I have to say is that I am amazed and humbled by the group of people we have supporting our sweet girl. We had the 3rd annual Kylie's Hope Charity Golf Tournament yesterday, which raises money for TS research. The weather was awful and it was cold and rainy all day. Yet, every golfer showed up~ 105 golfers total. They got soaked and were freezing by the end of the day, all because they love our sweet girl. We had 180+ people at dinner and had a great time. We raised $20,647 for the TS Alliance. Thank you so much to everyone who showed up to support us, to everyone who donated prizes and who bought raffel tickets. Special thanks to my girls, who braved the cold and rain and sat outside selling tickets on the golf course, in all their pregnant glory, =), to my sister and her friends, Kiley and her friend and Laura and crew, who also sold tickets, to Andrea and Nikki, who took pictures, to the "old" gals, who also attempted to sell tickets, to everyone who helped set up. Huge thanks to Kelly Gibbons, for all the time and effort you put in to help this be an amazing day, to Neil- words can not say enough how much work you put into this, to Jim, for emceeing the event and to the TS gals, you rock! To Amy and Jason- for taking such good care of our girls yesterday, to Joe Sensor's, for being as fabulous as always and to the crew at Comom, thanks for letting us play! And to every one else~ we love you!

On the homefront, the seizures continue. But, she is hanging in there. She has been bruising pretty badly lately, so she is getting labs drawn on wed when she gets her port flushed. Ava is FINALLY really walking. She walks like she has been doing it forever and when we look at her in amazement, she gives us a look like, "What's your problem?"

I'll try and update more soon!

Sunday, August 19, 2007 1:13 PM CDT

Wednesday, August 15, 2007 10:25 PMCDT

Apparently I should've saved my update for the end of the day. Here is a run down of our day~

Morning~ many seizures, went to the gym, Ava continues to march to the "Ants" song

12pm~ As we are eating lunch, a little girl asks, "Maria! Why can I see water in the bathroom?" Because little hands forgot to turn the facet off, the sink clogs and there is 2 inches of water in the bathroom. The water seeps through the floor, through the basement ceiling tiles, soaks in the carpet, runs my paperwork. I proceed to pull the tiles down, along with some unnameable icky things that fall into my hair. Borrow the neighbor's shop vac and dehumidifier. The potty book that "flushes" is a casualty of the day, so I guess potty training is done for the time being. That, and because of the large present left in the new big girl underwear Ky had on for 5 minutes yesterday.

1230 pm~ Ky tries to get off her chair, falls and smashes her head on the floor. No tears. Just triggers an 8 minute seizure, which finally stopped after a dose of valium. Put call in to Dr Frost's office, to make sure she doesn't have a head injury, (or anymore than she already has!). Told to wake her up after 30 minutes. I do, and she proceeds to seize again, whines, then falls back asleep. Dr Frost's office calls to check in and says they'll call back in a bit. The surgery scheduler then calls, says she is approved for the VNS and when do we want to set it up? Told her not until the new one comes out, which will be in Sept. She will call back then.

145pm~ Realized our phones are down and cell phone is dead. Can't chat w/ the dr!

2pm~ Seizing starts again and then she is back and ready to play. Has a few more seizures throughout the afternoon.

430 pm~ Mad dash trying to pack for our dinner reservations, while 6 little ones mill about.

445pm~ Ava and Ky fight over a chair, Av wins and Ky goes backwards, hitting her head again on the corner of the wall. Blood spewing out, all over my favorite pants. I am checking her mouth, not realizing it is coming from the back of her head (rusty nursing skills). Kids trying to play in the blood, as I am freaking out to get them to stay away.

5pm ~ Dr Frost's office calls back and tells us to increase her Zonegran tonight.

545pm~ Children's ER, explaining to the nurse what happened and mentioned the earlier fall and 8 minute seizure. He says, "And that doesn't concern you?!" Actually, it doesn't. Here are her meds she's on, the ones she's failed and the other ones she's failed. You fix her.

715 pm~ Four stiches later, a very brave girl scores a new Seseme Street book, gold fish crackers are smushed everywhere and we are ready to roll, with instructions not to wash her hair for a week. Don't mind the bloody clump stuck to the back of her head.

And how was your day?

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Good morning. Not much new is going on around here. Kylie continues to battle the daily seizure monster, although they are her usual ones, instead of the longer ones. The increase in felbatol hasn't seemed to do much. We see Dr Frost again early Oct, where we will discuss what we decide to do. I think we are going to go for the VNS but we'll see. Ky starts pre-school again in a few weeks, so we are enjoying the last few lazy days. I have been slcking and have still not signed her up for speech. On my list of things to do today.

We have been busy getting ready for the golf tourney and can't wait until it is over. We have a lot of good prizes this year, so it should be a good time. Hopefully the weather will cooperate! My parents neighborhood took a huge hit this weekend from the storm. They live in Como Park and is so sad to see all of the damage. There are so many trees gone that it looks like a different neighborhood. Ava woke up with each storm and refused to go back to sleep, so it was a long weekend. Speaking again of Miss Ava, she started walking again. Bbut, only if you sing "The Ants Go Marching In". What a nut. Her divaness has been in full swing this week and she makes me want to scream! But, she is fun too.

We have heard from my brother Andy a few times and he is doing well. Continued prayers for his safety.

We took the girls on a long bike ride on sunday, which they loved. Last night, we headed down to 7940, to visit Zoey and another TS family. Tonight, we are picking up Ky's pics from her photoshoot and going out to dinner for Laura's b-day. My aunt Ginger is coming in town tomorrow and we can't wait to see her! We have a girl day planned for friday, then dinner with friends and sat is the tourny. Pray for good weather!

Have a good week!

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If anyone would like to purchase a raffle ticket for the 3rd Annual Kylie's Hope Charity Golf Tourney, please let me know ASAP. Tickets are $5 each. You can let me know if you would like to enter a specific drawing for the top prizes or if you would like it to go into the general drawing. Money must be received by Fri Aug 17th. Checks can be made out to the TS Alliance. All proceeds go towards finding a cure for tuberous sclerosis. I will contact the winners. If you plan on attending the tournament, tickets can be purchased at the course or at the dinner. Again, we need a final head count for the dinner, as well as all of the teams accounted for. Please let us know ASAP!! Below is the list of prizes~

2007 Kylie�s Hope Raffle Prize List
There will be a box for each top prize to place your ticket in. There will then be a box for a general raffle. All losing tickets from the top prize drawings will be entered into the general raffle box.

TOP PRIZES

-Les Sendas Golf Course in Mesa, AZ 4 Rounds of golf Valued @$500.00

-Warners� Stellian Gift Card
Valued @$500.00

-Bud Dry Neon Beer Sign
Valued @$450.00

-MN Golden Gophers Hockey Stick Autographed by
Matt Koalska, John Pohl, Troy Riddle, Jordan Leopold, Ryan Potulny, Grant Potulny, Bill Butters, Joey Martin
Valued @ Priceless

-St. Croix Custom Made Fishing Pole SCII Graphlite
Valued @$285.00

-PSP Playstation Portable Video Game
Valued @$200.00

-Fuji Fine Pix F470 Digital Camera
Valued @ $185.00

-Hand crafted stained glass Angel window
Value ?

General Prizes

-Eagle Valley Golf Course 2 Rounds of Golf

-Animal Planet Stuffed Animal

-St. Paul Saints Hat & Long Sleeve Shirt

-St. Paul Saints Long Sleeve Shirt & Hat

-Lord Fletchers Old Lake Lodge Gift Certificate
Valued @$100.00

-Lord Fletchers Old Lake Lodge Gift Certificate
Valued @$100.00

-Lord Fletchers Old Lake Lodge Gift Certificate
Valued @$100.00

-Lord Fletchers Old Lake Lodge Gift Certificate
Valued @$100.00

-St. Paul Saints 2008 Season 4- General Admission Tickets & Program Book

-St. Paul Saints 2008 Season Honorary Ball Kids includes 4-General Admission Tickets, 2-Saints Hats, and 2-Saints Shirts
Valued @$100.00

-Mn Vikings Sign Picture By #29 Chester Taylor

-Curves 1 Month Member Ship @ Falcon Heights Location Only
Valued @ $130.00

-MGM Liquor Store Gift Certificate
Valued @ $25.00

-MN Twins 2007 4-Ticket Vouchers / Reserved Seats
Valued @ $80.00

-Lost The TV Series 1ST Season On DVD

-Quiznos Subs Edina Store Location Only
Gift Certificate
Valued @ $20.00

-Quiznos Subs Edina Store Location Only
Gift Certificate
Valued @ $20.00

-Quiznos Subs Edina Store Location Only
Gift Certificate
Valued @ $20.00

-Keys Caf� $20.00 Gift Certificate & T-Shirt

-Keys Caf� $20.00 Gift Certificate & T-Shirt

-Ceaderholm Golf Course 4-Rounds Of Golf
Valued @ $46.00

-MN Wild Polo Shirt

-MN Wild Polo Shirt

-Amstel Light Deck Umbrella

-MN Wild Zip up Wind Jacket

-MN Wild Zip up Wind Jacket

-EQ Life Spa & Salon Gift Card
Valued @ $40.00

-MN Wild Pull Over Sweat Shirt

-MN Wild Pull Over Sweat Shirt

-Smirnoff Ice Mirror Sign

-Stillwater Antique Shops gift certificate~ $50 value

-Handmade scrap book

-Handmade purse

And more to come!!

Monday, August 6, 2007 9:41 PM CDT

UPDATE tues 4:00 pm~ Another 10 minute seizure this afternoon. We skipped the diastat and just used the oral valium, which Ky fought me hard on. Dr Frost wants us to increase her felbatol and we'll see what happens. I do not like that her seizures are changing or lasting longer and hate to think what it could mean is coming. More later..........

Good evening. After Ky's big seizure on thurs, she went until sat night before she had another one. They are her typical ones, mixed in with a few facial ones. I gave up writing them down, since it seems pretty pointless. I need to email Dr Frost's nurse to figure out what the plan will be. Even though she was still a little drugged out on friday, she had her best session of speech therapy yet. She has her last day with her favorite speech therapist tomorrow, as she took a job with a school district. We are debating which speech program we are going to put her into. I think we will continue to take the month of August off of therapy, then go back full swing in the fall.

Ava is also taking a break from PT. After all her independant steps a few weeks ago, she decided crawling is more her style. She had her 18 mo check-up last thurs and the ped can't find a thing wrong with her. She agrees with both of Ava's physical therapists~ Ava is going to walk on "Ava time" and there is nothing we can do to make it go any faster. It has become a complete power struggle and the more we try to get her to do it, the more she resists. In fact, when the ped suggested she take a break from therapy, Ava started nodding her head and said, "Ess! Ess!" Little stinker. She is sending her mom to the brink of a nervous breakdown!

We had a quiet weekend. I worked and we just hung out. Tomorrow, we have our neighborhood block party. Wed, the girls and I are heading to Duluth with friends. We are going up for the night, to stay at the waterpark. It will be nice to get away, yet I am a little nervous to be so far away from home with 2 toddlers, especially with one who has been seizing her little butt off. I picked up some hours at work this coming weekend and we have a baby shower on sunday.

The golf tourney is rapidly approaching and I want to thank everyone who has signed up to golf, to volunteer and who has donated prizes. Dr Frost is even playing, as well as Dr Dunn, the ped neurosurgeon, (who will place Ky's VNS if we decided to go that route).

Neil is working day shifts for the next 2 weeks, so we are enjoying him being home in the evening. We had dinner together tonight and Grandma and Papa came over and we walked up to the park with the girls. I forgot how nice it is to have help in the evening!

Thank you all for your continued prayers. Keep them coming!

Thursday, August 2, 2007 10:53 PM CDT

As we were packing up to leave the epilepsy walk tonight, Ky started seizing and ended up having the biggest and longest one she has ever had. It lasted around 10 minutes, her whole body was jerking and diastat did not stop it. We then gave her a load of oral valium and after a bit, it stopped. She jerked a few more times after that and then got super crabby. Thankfully, Dr Frost was sitting right next to us. He said we can load her one more time tonight if we need to. Thanks Shannon~ I love you so much! And, we have to thank God for Elmo, who got Ky to calm down in the car. She finally crashed a little bit ago. Her eyes were still jerking a bit but hopefully she is just pooped. Not sure what brought this on, whether it was the heat or something else. She did have 2 seizures this morning, (before 630 am), while sleeping and all her extremities were stiff and jerking. One she looked like she was frantically waving back and forth. I don't like any of this. Please keep our sweetie in your prayers.

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***Check out the new pictures in the photo album- click on view photos at the top)

Good morning. We have been super busy the past week, having a great time. We have been having a good time hanging out w/ Uncle Andy, before he deplays to Iraq later this week.

On wed, the most exciting part of our day was that Ava took 18 steps, all on her own, (of course, with ALOT of convincing from us!). She continues to take them off and on. She can do but is super stubborn and prefers to crawl. We'll keep plugging away. Later that eve, we had a family dinner at my parents and saw our extended family. On thurs, we all headed out to the Mall of America. Ava got her 18 mo pics taken and the girls both went on some rides. We were there most of the day, then headed back to our house for pizza. On friday, we had errands to run and then had a playdate w/ Ky's friends Mary and Lydia. Ava ended up spiking a random fever, so we spent the rest of the day in the house. I had a class all day sat, so the girls spent the day with Auntie Kari, then Gma Sue. We went to Andy and Andrea's for a BBQ late afternoon and then the girls spent the night at Gma Karen's, while I headed off to Shannon's to prepare our booth for the Epilepsy stroll on thurs. We finished up on Sunday and then my mom, the girls and I drove to Fairbolt for Ky's pics. We should have them back in a week or so. Neil spent the weekend playing in a softball tourney.

Whew! As for the seizures, Ky had some pretty decent day last week, then had 10 seizures early yesterday morning. She just had a really strong one a few minutes ago, one they have not yet recorded. We are doing a pretty good job writing them all down but we are really noticing her seizures do look different from each other and are not all the same, like we thought. I think it was or will be full-moonish the last few days, so hopefully when it passes, things will look up. :)

We put a pull-up on Kylie last night and this morning, she woke up dry. I put her on the potty and she then did her job. She was SO proud of herself, as were we of her. Hopefully we will have a good go of it today.

Ky has her last week of pre-school this week, before her break before fall. She truely loves school and is our little social butterfly. Words have been spouting out of her lately, while Ava's favorites of the weekend have been, "Oh No!", "Beer" and "Oh, sh#t!" She has been spending WAY too much time w/ Uncle Ben.

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If anyone would like to join us for the Epilepsy Stroll on thurs, it will be held at Lake Phalen in St Paul and starts at 6pm. We will be again walking with "Drew's Crew". This year, our mom's group will have a booth there. We will be handing our info about our group, as well as be selling aromatherapy rice socks, with proceeds going to the Epilepsy Foundation.

The 3rd Annual Kylie's Hope Charity Golf Tournament is rapidly approaching and we need to start our head count. If you plan on playing, please email us your team info. If you plan on coming only for the dinner, we need to turn the head count in. We have head that numerous people are coming/playing but we have had a slow response getting money turned in. Also, if you plan on donating an item for the silent auction, we nee that turned in as well. A HUGE thanks to everyone who has already donated and signed up. We truely appreciate it. The golf tourney has been a huge undertaking for us and we are not sure if we are going to continue with it next year, so we are hoping to make this one the best one yet.

Prayer requests~

For our sweet girl, that she may once again get control over the seizure monster.
For the Olson family, as they approach the 2 yr anniversary since their sweet Drew became an angel, as well as for his upcoming b-day.
For the Beecher Family, for comfort in their hearts, as they continue to miss their sweet Jess.
For all of our 7940 kiddos, that the seizure monster finds something else to do.
For their moms and dads, that they may have some peace in their hearts.
For my cousin BJ, who is in Iraq, fighing for our country anf for Lydia's dad and for my brother, both who will be joing him this week. Pray for their safety and that they come home in one piece.

Ok, this is update has become a small book but our last piece of news is that the TS Alliance contacted us and they want to use Kylie's story for the upcoming year's national fundraising letter. She will be famous! :) That's all for now. We will continue to update with any changes. Have a great week!

Tuesday, July 24, 2007 5:09 PM CDT

Hi all. We just got back from seeing Dr Frost and I feel good about the plan we have in place. Next tues, he is going to present Kylie to surgical conference for the VNS, (vagal nerve stimulator). He said it is a formality and that she will be approved, since she is not a surgical candidate and her seizures are partial onset. A new VNS was just approved by the FDA on Monday and will be available late fall. It is smaller than the current VNS and has more options. A few drawbacks are~

1. It could make her voice sound like she is under water, whether temporary or permanent.
2. It could cause a her to cough- a lot.
3. She would never be able to have a full body MRI again, although she could have a head MRI. With all of the future organ damage TS can cause, we have to decide if this is worth it or not and if we can get by with just CT scans.
4. Although the device itself could at one point be removed, the coil that attaches to the vagal nerve will be permanent. Scar tissue grows to the coil, making the risks to remove it just not worth it.
5. It is another piece of hardware in her body, which will leave more scars and will make her "stand out" from her peers, (although this is the least of our concerns, since seizures do that on their own).
6. It is another surgery to put her through.
7. It may not work or could make her seizures worse.

Benefits~

1. It could give Kylie a chance at a normal life, or as close as possible with a life with TS.

Our other option is to try the low glycemic index diet. It is similar to the ketogenic diet but has few restrictions. Nothing has to be weighed out and Dr Frost described it as a modified South Beach Diet. Maybe the whole family can go on it and we can all get beach bods. :) A TS dr in Boston has been using the diet and they are finding similar results to the Ketogenic diet. I don't have enough info on it yet but it may be something we will try.

A few new meds are going to be on the market soon, which are always an option. Ky will be coming off gabatril, since it doesn't seem to be working and hopefully, the transene will be close behind. Thinking about being down to 2 med sounds like a dream! Since we increased her zonegran a few weeks back, we have been having more tolerable days of seizures. She has had 3 today but only had 1 on mon and 1 on sun, (or at least that we saw). He does think she is seizing when she wakes up at night, so we need to keep a closer eye on her at night. They had not recorded any seizures where her whole body was shaking, (we have only seen around 5 total), so if we start to see more of those, she will need to be admitted to have them recorded. We need to keep a close log of seizure types/frequency/duration, etc, with the chance that they may decide to do brain surgery after all. If one seiuzure type seems more frequent than the others and they could pin point that seizure type, they may be able to remove the part of the brain that is causing those seizure.

How do you make decisions that could effect your child's life forever? We have a chance to really help her or to really harm her. Or maybe things won't change at all. But, I know if we don't try everything we can to give Ky the best life possible, than we are not doing our job as her parents. God gave us such a wonderful gift when he chose us to be Kylie's parents and I know He will be with us, every step of the way. ~I'm being paged for dinner. More later~

Saturday, July 21, 2007 0:48 AM CDT

I can't believe the week has already flown by! Thank you for all of the birthday wishes. Kylie decided to celebrate at 345am the morning of my birthday. Not quite the kind of party I was hoping for, after had just going to bed 2 1/2 hrs prior, but we made it work. I spent the day with family and friends, just enjoying being together. Ky finished her 2nd week of pre-school and I think we got the kinks worked out. They have now seen her seizures and her PT, who has worked with her the past few years, is working with her at school 1x a week. We absolutely love her and it will be hard to say good-bye in the fall. They said Ky has been talking more at school and when I went to pick her up on thurs, she did not want to leave. She did fall smack on her head and has a nice huge bruise on her forhead. I am hoping it is gone by next weekend, as Ky is getting her pics taken. A woman who takes pictures of terminal and chronically ill children, (at no charge), is going to do a session for Ky next weekend. She does beautiful work and we are excited to see the outcome.

Ky went about 24 hrs w/o a seizure today but then had 4 this evening. A huge improvement but still not what we want to see. It is heart breaking to see "the look" on her face, where she knows she is going to have a seizure and looks for something to quick grab on to. Although she has had fewer seizures, they remain more intense than ever. She has also continued to cry out in her sleep, every night, around 3-4am. She does not really wake up but it is a terrified scream and sobbing. It makes for a long night.

A huge thank you to the aunties, who took the girls to swimming on thurs, so I could go out w/ my 7940 moms. It is truely rejuveinating to be w/ those women. I can't put into words what they mean to me but I know I would be lost without them. We are planning on walking together on Aug 2nd, around Lake Phalen in St Paul, to honor our kids with Epilepsy. We will again be walking with "Drew's Crew", strolling for our beloved angels.

Miss Ava is taking a few more steps lately. We are a little concerned there may be an issue with her right hip but I'm not going to freak out until her 18 mo check up in a few weeks. We have caught her standing alone if she thinks we aren't watching and will stand by herself in the little pool. I personally think she is playing us but we will see. I love her to death but for the past week, have been thinking about putting her in a different daycare, just so I can get a break! She has attitude with a capital TUDE. Very strong willed, very opinionated, very dramatic. Her and Ky have been pulling the jealousy cards out lately and both want my constant, undivided attention and will fight each other to see who can get it first. :)

We have a hugely busy week ahead of us. We have a birthday party tomorrow, MN Zoo on mon, we see Dr Frost on tues and my brother is coming home on wed for some R&R before heading off to Iraq. We can't wait to see him!! We are having a family dinner on wed, a trip to Mall of America on thurs and more family time the rest the week. I am looking forward to being off and just being with my girls. I have a few dr appts this week and hopefully can just relax.

Please continue to pray for Caroline, the Olsons, Beechers and Roths and for our sweet girl. We would LOVE a break from the seizure monster. I will update after our appt on tues. Have a great weekend!!

Saturday, July 14, 2007 10:38 PM CDT

Good evening. I can hardly believe the summer is half over! Kylie loved her first week of preschool. Her teacher said she has been very social and is willing to try any activity they put in front of her. She has been going up to new kids on the playground, wanting to play. She had OT on friday and her therapist was blown away. She told us that she guesses that she just needs to get to know Kylie better, because her original assessment was way off. She is far above what she originally thought! She said she needs to come up with some new goals, since she is "obviously well ahead" of the ones she originally set! We were thrilled to hear that. I guess it goes to show you can't judge a person by the first impression. We took the kids to the zoo on thursday and they were in awe of Sparky the seal. We had swimming lessons on thurs and Kylie was actually doing the correct arm movements. She was not at all thrilled about jumping off the side of the pool but Ava could not have been happier. She is like a fish in the water and is so fun to watch.

Today, we headed down to Lakeville to watxh our friend Cam play baseball. He did great! We then had lunch, where Ava destroyed the place. We have been hanging out at home tonight and have brunch plans in the morning w/ friends.

The seizures are still hanging out in our sweetie's head. This morning, we got up and Ky was holding my hand as we walked into the living room. She tripped, hit her head on the wall and started seizing hard instantly. Hopefully it was just a coincidence, or maybe she tripped because she was about to seize but it was scarey. Some of the ones she has had the past few days have been pretty hard. She fell flat over on thursday, trying to grab the chair as she went down. I just wish there was something we could do to help her. The terrible twos are starting to set in as well. She has been having tantrums when she doesn't get her way and has been a stinker about taking her meds. When I tell her, "It's time to take your medicine!", she says, "NO!", shakes her head and tries to run away. Then, when you finally get it in, she spits out the liquid or picks the pills out of her mouth. As annoying as it can be for us, I love to see she has a mind of her own and that she is using it!

Kylie's Hope Golf Tourney is rapidly approaching, so if you plan on playing, please have your money in by Aug 1st. If you plan on the dinner only, have any prizes to donate or want to help out that day, please let us know.

Please keep our friend Caroline in your prayers, as she battles another round with the seizure monster.

Wednesday, July 11, 2007 10:34 PM CDT

Good evening. Things have been crazy around here. Unfortunately, the seizures have not slowed down as much as I had hoped. We quit counting the number of seizures she is having a long time ago but she was close to being loaded at dinner time tonight. I hate, hate, hate seeing her struggle, how she tries to be so brave and play through each one, how the other kids notice she is doing something "not quite right". Sighhhhhhhhh. Ky did go to her first day of pre-school yesterday and the teacher said she had a good day. She did not see any seizures but considering the teacher has never seen one before, I don't know if she would really know if Kylie was having one or not, since Ky's can be easy to miss. The school also said they have to call 911 if they have to administer diastat, which I totally understand, but at the rate we go somedays, they might as well just keep an ambulance in the parking lot. The teacher did want Ky's PCA to wait in the parking lot the first week, just in case they need her. Mom and Ava did instead, watching "Elmo in Grouchland". :) Ky looked so cute in her piggies, with her new pink back pack on her back, (which caused her to tip over a few times!) As soon as we walked into the classroom, she walked right up to a cute little girl who has downs and they played dollies together. She could've cared less I was leaving. I was a little sad, mainly because I can't believe my little girl is old enough to go to school! She will be the youngest in her class, which is good, since she will get 3 full years of pre-k before she goes to kindergarden.

The girls hung out w/ Gma Sue last night and with Gma Karen tonight, while I went to class. They all had a great time. I am beat, especially since Ky has been been crying out in her sleep at 4 am for the last few nights. It's like clock work. She doesn't wake up but continues to cry off/on until morning. I wish I had a road map to figure out how her brain works!

Miss Ava has taken a few more steps and is a pro at manuvering Ky's old walker. She cruises all over the place in it. She is so much stronger and sturdier than even a few weeks ago but lacks the confidence piece she needs to walk. She has therapy at 8 am, with the hope an earlier time will work better for her "schedule". Close to lunch does not work for her, since she spends most of the time trying to get to the table. She is saying more and more everyday, which is so fun to watch. Her new favorite is singing the "Itsy Bitsy Spider". She makes the motion for the spider going up and says, "Gider! Gider!" She has also been the potty champ lately, so we are going to spend the weekend working specificly on potty training. I took a class on it a few weeks ago and we are armed with training pants, plastic underwear and pull-ups. Kylie is hit or miss going on the potty, so this may be a total wash but at least we will give it a serious go. Keep your fingers crossed!

Keep the prayers coming that these darn seizures will go away. We are debating the VNS and I will post more if we decide to go for it. I don't know if her port-a-cath would affect it, so we will have to find out.

Ky has school in the morning, then PT afterwards. Ava has 2 rounds of PT tomorrow and they both have swimming lessons in the eve. Ky has speech on friday and may start hoseback riding w/ her friend Mary in the next few weeks. We are getting her evaluated a new speech therapy program, which she will hopefully start next month.

I guess I'll turn in for the night. Don't forget the 3rd Annual Kylie's Hope Charity Golf Tourney is coming up Aug 18th. All proceeds go to the TS Alliance, which supports funding for research for this crappy disease. If you would like to sign up to play, to volunteer, to donate silent auction or live auction items, or even to just join us for dinner, send me an email.

Thank you all for your continued prayers and support.

Sunday, July 8, 2007 0:39 AM CDT

Happy birthday Neil! We love you!!

I hate to jinx it but Kylie has had a few better days. On sat, I think she had fewer than 10 seizures. She is also putting more words together, "Iwach it! wanna wach!", as she points the remote to the tv and then says, "Elma! wanna wach!" This week, we are having Elmo detox. If we don't let her watch Elmo, she is having major temper tantrums, ( and this has nothing to do with her daddy giving her anything she wants, right Neil? :) Ava has also been pretty chatty, although I raised an eyebrow when she told me to "back off". Another cute tidbit learned from dad. She also toom 2 steps on friday, so we are going to keep working at it, (although, she had to be coheirced with cheerios).

Both girls got their hair cut yesterday. Ava now has bangs and looks pretty darn cute. We have been staying indoors, since it has been so hot out.

We got the eval from Kylie's new OT back and the results we not very good. She is pretty far behind on a lot of her fine motor skills, although she scored close to her age in self-help skills and in a different portion of the test, she scored at an age appropriate level for her receptive language, (she is 33 mo and scored at 30 mo). We were very happy to see that, especially since her receptive language language improved 6 mo in age during a 6 mo period. I am concerned about the rest of her OT skills, especially since her OT was cut through the school district about a year ago. I was under the impression she did not really need it and apparently, that is not the case. I know some of her skills are just going to be behind, no matter how much therapy she gets but I feel this is such a crutial point in her life, that all the therapy we can get will only help her. I need to go over a few things with her school coordinator, especially since the letter we just got shows her going to school an hour less a week than we were told. Hopefully, her seizures will continue to decrease and she will be able to go on tues.

We have a busy day ahead of us tomorrow. Keep the prayers coming!

Thursday, July 5, 2007 1:30 PM CDT

I wish I could say the seizures have stopped but that is just not the case. I would say over all, she is having far fewer seizures than a week ago but is still having too many. Today her walking has been off and she is super floppy. Her PT, who hasn't seen her in two weeks, can't believe what a difference there is to her tone and gait. I guess that's what hundreds of seizures and one too many loads of valium does to the body. She also vomitted a few times in her sleep last night. She didn't start coughing and gag herself, like she usually does, either. Not really sure what that is about, so we will watch her close. I am super nervous to send her to her first day of pre-school on tues. I may have her PCA sit in the parking lot, just in case!

Kylie was crabby last night and fell asleep early, so we did not make it to see fireworks. We lit a few things off in the driveway, which the girls didn't really seem to dig, so I guess it's a good thing we stayed home. We went to a parade yesterday and Ava freaked out with the police siren, the old cars honking, etc. Kylie had a good time, waving her flag and watching the crowd. We stopped by the Grand Ol' Creamery afterwards, which was a hit with the girls.

Tonight, we are heading to Neil's softball game, then grilling out later. We have a birthday party this weekend and plan on celebrating Neil's as well.

Please keep the Olson family in your prayers. Today is the 1 year anniversary since they last held McKenna in their arms. We miss you so much Muffin! Also, please keep Jess's family in your thoughts, as well as for the seizure monster to leave our girl alone.

Tuesday, July 3, 2007 0:12 AM CDT

Things are about the same. Ky continues to seize around the clock, with no end in sight. The sucky part of it is that she falls asleep, then wakes up a short time later having a seizure. She is exhausted, we are exhausted and htis just plain sucks. I have worked the past 4 evenings, which has not made things any easier. A huge thanks to Laura and Megan for taking such good care of my girl today, as well as to my mom and Gma Sue, who are always there for us, whatever we need, 24/7.

If tomorrow starts out with another bang, I will call Dr Frost's office and see if we can come up with a new plan. We at least need to get her a good solid nap and a good night's sleep. We have the pule oximeter hooked back up to her at night, so at least we can tell if her oxygen levels get too low. After putting so many seizure meds into one little body, I get worried about it affecting her breathing at night.

So, that's where we are at. We are hoping to get to our annual neighborhood 4th of July parade on wed and to see some fireworks. We will be remembering our sweet friend McKenna on thurs, as it has been 1 year since she went to meet Jesus. Please keep the Olson family in your prayers this week. Neil turns the big 3-0 on Sunday, so we are hoping to get some time in to celebrate. Thank you all for your continued prayers. We definately need them!

Friday, June 29, 2007 11:01 PM CDT

UPDATE Sunday 630 am:
Things are not going much better here at the Gibbons home. Kylie ended up getting loaded at 1am saturday, then had a few more seizures after and started up again bright and early. Things continued that way for most of the day yesterday, until late afternoon, when things really picked up. Her seizures became more involved, lots of shaking and were lasting longer. She was loaded again at 530pm but the seizures were back after 20 minutes. I ended up coming home from work early and after talking with Dr Frost, he decided to try oral valium. We gave her some around 8pm and she fell alseep. We went to bed around 930pm but by 11pm, she started up again. She seized at least a few times an hour throughout the night, with no change this morning. So, I think we are in for another long day. We wanted to try and do some fun stuff this week but the thing about living with TS is that when things suck, they REALLY suck. Guess we will be homebound. :(

Kylie continues to seize, although she broke them up more through out the day. This morning started out rough and she started up at 530 am. By this evening, she slowed down and was sezing about every hour. These are tending to last a little longer and really seem to be wearing her poor little body out. Luckily, her love for Elmo is getting her through this. :) After each seizure, she asks to watch him. Dr Frost gave us the option to increase her zonegran or felbatol. We chose the zonegran, so we just need to make sure she is drinking enough. She was pretty unsteady today, which is not uncommon after she gets loaded, and spent much of the day on the couch. Dr Frost is on-call this weekend, so we are supposed to let him know if things start going down hill fast.

Ava has been another story. She has a wicked temper and was in full force all day. I am seriously getting concerned about what she will be like as a 2 year old. I also had a horrible dream last night that we found out Ava realy does have TS and started having seizures. So, not only am I dealing w/ seizures all day, I am dreaming about them at night. One of my absolute worst fears is finding out my family does in fact have TS somewhere in the gene pool. I pray to God that dream never comes true.

Please keep the prayers coming that Ky's seizures will stop. Angel babies~ we need you! Also, contnued prayers for Jess's family, as well as for the Olson's. as they get ready to face McKenna's first Angel anniversery.

Wednesday, June 27, 2007 11:10 PM CDT

UPDATE thurs 11am~ Kylie had a horrible morning. She started seizing at about 530am and probably had 25 seizures by 8am. She was clustering and probbaly had 20 minutes total of seizures. :( We loaded her and she has been out for most of the morning. I am waiting for Dr Frost's office to call back from yesterday. Hopefully they can come up with a plan to keep us out of the hospital.

Good evening. The seizure monster has been out of control today. She was back to having 8-10 in an hour this afternoon. I talked w/ Dr Frost's office and her labs all came back with room to increase the doses. We increased her gabatril tonight, so hopefully that will help. All of the seizures we have been seeing have been her regular ones. Obviously, we are super frustrated and with her starting school in a week and a half, I am majorly freaking out about sending her. I am keeping my fingers crossed we have better control by then. I am trying not to load her, since it mainly make her "drunk". She had a period after her nap yesterday where she was having serious trouble walking~ she face planted multiple times, as well as fell backwards and smashed her head on the floor. She seemed better in the evening, but it was still scarey.

We saw the dentist today for a follow-up and her tooth is pretty much as good as it is going to get. We had a nightmare of a time trying to get her xrays done, (and I don't believe she sat like an angel last time, as her daddy described!) Let's just say it involved me holding her down, under a lead vest, with a hippo sitting on top of us. She also had her teeth cleaned and they sparkle! Her root to her permanent tooth looks ok but if we notice any changes, she will need to be seen right away.

We are getting set up with a new therapy place, that will work on speech and her oral-moor skills. I took a potty training class tonight, which will hopefully give me some good ideas. Ava is going to Grandma's next week during the day, so Ky and I will work hard.

We got her new bed set up and Ky and I had a great night of sleep. Hopefully it continues tonight. The girls have swimming tomorrow eve and we have a busy weekend ahead.

Please keep the prayers coming that the seizures will slow down, go away, disappear~ whatever. Also, continued prayers for the Beecher, Olson, Roth and all the other angel babies families.

Special prayers also for my sister-in-law's uncle, who is on a vent, after having a brain hemmorrhage. Unfortunately, he was in Cambodia on vacation at the time and was transferred to Bangkok (sp??) Their family needs lots of prayers at this time.

Lots of love to you all~

UPDATE~ Kylie's story is being published in the new TSC book. Here is a link to the TS Alliance's main page, (copy and paste, since I can't figure the link thing out!). Click on the area that says "Personal Journeys of TSC- In Their Own Words" and you will find Kylie's story under "Kylie's Hope". Happy reading!

http://www.tsalliance.org

Sunday, June 24, 2007 11:06 PM CDT

UPDATE~ Kylie's story is being published in the new TSC book. Here is a link to the TS Alliance's main page, (copy and paste, since I can't figure the link thing out!). Click on the area that says "Personal Journeys of TSC- In Their Own Words" and you will find Kylie's story under "Kylie's Hope". Happy reading!

http://www.tsalliance.org

Good evening. I hope you all had a wonderful weekend. We said good-bye to our sweet friend Jess this weekend. It was incredibly hard, yet the service was so beautiful~ so Jess. I was with my AMAZING group of 7940 moms, the women who truely "get me". You ladies are awesome and I love you all so much!

The seizure monster continues to rear his ugly head. Ky had a seizure this morning that started with her getting scared, (from me telling her not to touch the tv!), and ended with her face planting on the floor and going into her usual stiffening. Sighhhhhh. They are creeping up in number, so we will see what happens. I spoke w/ Dr Frost's office on friday and said I refuse to increase any more meds until we check her levels and other labs. They agreed, so homecare will be here at 730 am to draw labs. Keep your fingers crossed her port will work. If not, we will head into the heme/onc clinic and probably have a dye study done.

We only have a few therapy sessions this week, which will be a nice break. Ky goes back to the dentist on wed, to recheck the tooth she injured a few months back. I think it looks ok, just a little grey.

The girls and I spent the day searching for a new bed for Kylie. She has been sleeping between Neil and I for almost 3 years (yikes!) and we are discovering why a queen bed is only big enough for 2 peoople. We are looking for a full size set of bunks, or maybe a full/queen single bed and Ky and I will sleep in her room. Kinda sad but hopefully this will help us all sleep better. Neil is restless at night, which causes Ky to be restless, which ends up with me having a foot/knee/elbow in my face for most of the night. I am hoping to find one soon, before my mom finds a free one on a corner. :) The girls got some loving from their buddy Cam today, who bought them their first donuts. Ava had already polished down a full lunch but it was pure bliss when that donut touched her lips. I wish I had a picture!

I have a busy week full of work and classes. The girls have swimming on thurs and we plan on just hanging out the rest of the time. Our prayer requests for the week are for the seizure monster to take a vacation, for Ava to get her chubby buns walking, for the Beecher family, the Olson Family and for everyone else missing their angel babies.

Wednesday, June 20, 2007 1:03 PM CDT

Our beautiful friend Jess gave the gift of life last night and her heart and kidney are helping other families to rejoice today. It was a long, hard and devestating weekend. The Beecher family was so gracious to let me be a part of saying good-bye to Jess. It is something I will never forget and will take with me the rest of my life. Hug your kids. Take joy in their smiles, their giggles, even their sassiness. Smell their hair, kiss their toes and snuggle close to them. Life is a gift~ cherish each moment with your kids, because it can be gone in a blink of an eye. Jess~ we love you so much and can't wait to play with you again. Ky is missing her best girlies but when she meets up w/ you and Muffin one day, you'll have to teach her to catch the bubbles. Watch over my sweet girl and keep her safe from the seizure monster. I think w/ all the sassiness you and Muffin are going to be giving him, he'll be too busy to bother Ky. We love you! www.caringbridge.org/nd/jessmarie

I'm leaving friday to meet up with the other 7940 moms and we will be going to Fargo for the services. Anyone reading this that is going~ wear purple!

The monster found Kylie over the weekend. She is averaging about 5 seizures a day but they look different than her previous ones. They mostly involve her face and are easy to miss. I emailed Dr Frost's nurse but told her I want levels and labs done before they increase any meds. We need to follow up on her iron level as well, esp since she won't take the iron anymore. We saw the dermatologist this week and he gave us a script for the rash on her face. He also said there is a tiny chance the medication could cause cancer. Oh yeah~ sign us up for that one. So I guess we will deal with the rash. He also said she has a tiny start to the angiofibromas on her face, close to her nose. He said he will check her in a year and maybe do laser surgery then. Not only can this diase cause tumors to form in any to all of her organs, it can show up on the face as well and cause serious disfigurement. So, they try to stay on top of it early.

Ky had her last home therapy through the school district today and now she will be getting them at school, which she starts in 3 weeks. She will have her private home speech through Aug and then her therapist took a new job. We need to get her into oral motor therapy, so if anyone has any suggestions, please let me know.

Saturday, June 16, 2007 2:08 AM CDT

UPDATE Tuesday: Ok prayer warriors~ start storming the heavens. We need big prayers that Jess's vital signs stablize, mainly her heartrate and blood pressure, so the transplant can proceed as planned. In their complete unselfishness, Amy and Jason are wamting things to speed up, so other sick kiddos don't have to wait any longer than necessary for Jess's organs. Keep the prayers coming~

UPDATE Monday: Our sweet friend Jess has won her battle against the seizure monster and is resting in the arms of Jesus. Tonight, after one more test, she will be making miracles happen for many other kiddos, as she becomes an organ donor. Our hearts are breaking for our dear friends. Please pray for their strength and comfort in the next few weeks. Jess looks like a sleeping angel, as she gets ready to join her sweet angel friends, Drew and Muffin.

I just got home from visiting our sweet friend Jess. Please, please pray hard for this sweet girl. It angers and frustates me how quickly and suddenly seizures can rock your world. As soon as you start to let your guard down, you get the wind knocked out of you and you are back to square one. Jess and Kylie have gotten to be good "seizure buddies" over the past few years. The girls have a pattern where if one kiddo got admitted to the hospital, the other one wasn't too far behind. Jess' parents have been a huge support to our family~ they even drove about a 8 hr round trip in May, just to come support us for the TS Walk. Beechers~ you are SO special to our family. We love you guys! Please leave some prayers and encouragement to them~ www.caringbridge.org/nd/jessmarie

On the home front, things are pretty good. Ava's fevers calmed down and we now have to keep a journal for her fevers. The dr thinks she may have a cyclic fever syndrome, where she runs high temps every few weeks. When we look back, Kylie was Ava's age when all of her high fevers started, although we related hers to sinus infections or her seizure meds. They probably both have the same thing. Kylie grew out of hers, so we are hoping Ava does the same. We just have to make sure her fevers don't get high enough to cause seizures or organ damage. I have found through all of this medical crap we have dealt with over the past few years, that I have lost the "Oh Shi@! factor. I think I have lost my ability to truely freak out and that is not a good thing. I truely never want to test that theory and have something horrible happen but I need to get more stressed. I guess that is where my mom comes in. :) Ava is still not walking (grrr) and has been having horrible tantrums for her therapists. She flat out does NOT want to do PT. She pouts, she cries, she flings an arm arcoss her face, she glares and tells them, "Oh No!" Her therapist told me we are going to be in trouble when she gets to be a teenager but I told her I'm just worried about what she will be like at 2!

Kylie is doing pretty good. Just a few short weeks until she starts pre-school. She has been wearing her new pink back back around the house and looks so cute! We met her new OT yesterday, who seems awesome. She just moved here from Chicago and happened to work with a kiddo there who had TS. She has a lot of new ideas and has a good handle on TS, seizures, seizure med and the effects of all 3. We are going to really focus on Ky's wavering attention span. She has a seriously hard time focusing on staying on task and we would like to see improvement. Whether it is from the meds, the seizures or from the tubors, we may never know. However, since she does have 2 large tumors on each side on her frontal lobe, I think this may be a life long issue. But we will see.

Kylie's walking has gotten so much better. We can actually walk into a store, just holding her hand and she can do it, verses falling every 10 feet a few months ago. She is sporting her first skinned knee, which she was facinated by when we put the seseme street band-aid over to cover. We are looking to get her into an oral-motor therapy program, which will work with the low tone in her mouth and hopefully help her speech. She is still talking quite a bit but still needs a ways to go. She has been refusing to take her iron meds, so we are going to get her iron level checked with her next port flush, to see if we need to continue. Her sleep has again been horrendous and she has been up just about ever night. Last nigh, she went to bed at 930 but was up by 1030 and stayed awake until 230. I supposed dad letting her nap from 12pm-6pm this evening means she will be up early for me.

The girls both started swimming lessons this week, which Ava loved. Kylie was slightly frustrating, since she would rather splash in water instead of making airplane arms. We were quite the sight to see~ me trying to straighten her arms out so we could "glide" across the water and her splashing water in my face instead. It may be short lived.

I am supposed to head out of town in the morning with the girls, to Austin, MN. My whole family is there for my sister's softball tourney. I think we are going to wait until the afternoon and I am going to go back to check on Jess first.

Sorry for the long break in between updates. I have been crazy busy~ 55 hrs a week of daycare, working every fri and every other weekend at the hospital, and keeping 2 kiddos entertained in the eve while Neil works. I am taking a class a few nights next week, so it will be even busier.

We are getting close to our 400,000 visitor, so please let us know if it is you! Thanks for stopping to check on us. We love love and appreciate all of your support for our sweet girl!

Friday, June 15, 2007 10:08 PM CDT

Please pray for our sweet friend Jess. She is being life flighted from ND to St Paul, battling the seizure monster and fighting for her life. www.caringbridge.org/nd/jessmarie
We love you Jess!!!

Sunday, June 10, 2007 3:31 PM CDT

MONDAY 1159pm:

Our ped called this afternoon and Ava's urine culture grew something funky. Ewwwwww. She does not think that she has had a random virus or 2 the past few weeks and thinks something else is going on. Her breath has been icky too, so hopefully it's just a case of rotten adnoids. She wants to see Ky's port too and decide if it needs to be fixed or come out. Ky got up at 320am and stayed up all night. She continues to pull at her port, so maybe this is making her uncomfortable. I did see a seizure today as well, although not her typical one. If she gets really excited and laughs too hard, which she did when the dog was licking her face, she goes into a stare, drooling and gets goofy eyes. Not cute at all. So, now we have the task of trying to keep her from laughing or getting excited. What a great way to live! Anyways, we see the ped in the morning and will hopefully know more then. Av still had a fever today and has not been eating very well~ definately NOT her style. More later..................

Just a quick update before I go crash~

Miss Ava has been up to no good. She spiked a high fever yesterday and by the time we got her to the ER, it was 105.4. No other symptoms~ she was just pretty toasty. They did blood work and a urine sample, all negative. The dr wanted to cath her to get a sample but Ava peed in a cup for them instead! The dr was mad the nurse didn't cath her, b/c "what 16 mo old can give a urine sample?" Apparently, our little non-walking prodogy, (sp?). :) The blood cultures should be back in a few days. We were a little concerned b/c we went through the same thing w/ her a few weeks ago, w/ a temp up to 105.1. She has to go back if she still has a temp in a few days. We didn't get to bed until after 3am and Ky was up at 630am.

Ky seems fine. Still no seizures that we have seen. Her port does seem to be messed up, so I have to get her into the ped this week. She has been pulling on her neck and the cath seems to be buldging out from her neck.

Welcome to the family Baby Laci!! The girls can't wait to play w/ you! More later...........................

Upcoming Events~

Thurs Aug 2nd Stroll for Epilepsy at Lake Phalen in St Paul. Come join us as we walk w/ "Drew's Crew", in honor of our sweet angel friends, Drew and McKenna. If anyone would like to sponser "Drew's Crew", go to the link below:

http://www.firstgiving.com/drewandmckenna

Sat Aug 18th 3rd Annual Kylie's Hope Charity Golf Tournament at Como Park Golf Course, with dinner to follow at Joe Sensors in Roseville

Come help us raise money to find a cure for TSC. This is a very special event to Neil and I, as it is done in Kylie's honor. Last year, we raised over $18,000 and plan to raise more this year.
If you would loke to play in the tourney, volunteer at it or donate prizes for the auction/raffel, please let me know. This is a tax deductible event.

Monday, June 4, 2007 1:18 PM CDT

Grandma survived the weekend w/ the girls. They had a good time, going to grad parties, to the Children's Museum, out to lunch and just playing with all of Grandma's toys. I picked them up yesterday morning and took them to the Grand Ol' Days parade. They had a blast and I have to say Ava is definately THEE parade girl~ dancing to the music, waving to the pretty girls and blowing kisses to the vulcans. Ky just waved to everyone who walked by and said "Hi!" Neil and I had a blast cleaning all weekend (ha-ha). I went scrapbooking on fri night and got some reading in. Not much is new around here. We are still enjoying our break from the monster (fingers crossed!) Ky finally stood up in the middle of the room at therapy and they claim she has used a straw for them. :) She has her last week of intensive therapy this week. She will continue home therapy through the school district through June and then starts pre-school next month. She will continue to get therapy at school. She will also still get her home based therapy 3-4x a week. The girls are both starting swimming lessons next week, which I think they will really enjoy. I, however, am having panic attacks about getting into a swim suit. And did I mention I do not know how to swim? Good thing we get to stay in the shallow end! We stopped up to 7940 last week and met some new friends and caught up with some old ones. I am looking forward to another get away w/ my moms group at the end of the month. You girls give me strenth to get though each chaotic day! We have some out of town family coming in this week, so we hope to get caught up with them. Next weekend, I am taking the girls to Austin, to watch my sister play in the Spam tournament, (you have to be from MN to get that one!). Neil is going to enjoy a little R&R for Father's Day and go fishing, (even though I cut the grass and picked up dog poo on Mother's Day, while he napped!) :) Ky has an appt next week at the U of MN to have the rash on her face looked at. Hopefully they can give up some tips to get rid of it. Othwise, we don't have any dr appts until next month. Ky's nose has started to drain a bit today, so we will see if she ends up w/ a sinus infection.

Upcoming Events~

Thurs Aug 2nd Stroll for Epilepsy at Lake Phalen in St Paul. Come join us as we walk w/ "Drew's Crew", in honor of our sweet angel friends, Drew and McKenna. If anyone would like to sponser "Drew's Crew", go to the link below:

http://www.firstgiving.com/drewandmckenna

Sat Aug 18th 3rd Annual Kylie's Hope Charity Golf Tournament at Como Park Golf Course, with dinner to follow at Joe Sensors in Roseville

Come help us raise money to find a cure for TSC. This is a very special event to Neil and I, as it is done in Kylie's honor. Last year, we raised over $18,000 and plan to raise more this year.
If you would loke to play in the tourney, volunteer at it or donate prizes for the auction/raffel, please let me know. This is a tax deductible event.

Ok, enough for now. Enjoy this beautiful day!!

Wednesday, May 30, 2007 6:15 AM CDT

Good morning. We have been having a LONG week of sleepless nights. Kylie hsa been getting up pretty much every night, whether it be to play, talk, cry or just hang out. Last night, she didn't fall asleep until about 1am. I guess it's time to increase the melatonin. She had a few seizures on saturday, so I increased her gabatril and she hasn't had any more. I am a little concerned about it though, since I looked up the serious adverse side effects of the med and # 1 &2 both listed "DEAD" as the side effect. That really was not the behavorial side effect I was imagining. We have also been noticing her arms tremoring. Usually it is after a long morning of therapy but on occasion, we have seen it on a typical day. At one point, she looked like she had a severe case of parkinsons. I'm not sure if it is seizure stuff or med related. My guess is it is the meds, since it started after the last increase. Ky has her last day of her intense therapy program tomorrow. We have seen some good results from it.

The girls have literaterly been driving me nuts lately. =) Ava is going through horrible seperation anxiety at the moment, even through she went through it months ago. She is literately attached to my leg and freaks out whenever I leave the room. I told her it would be easier to follow me if she would just walk, instead of trying to find enough wall space to hang on to. There have been screaming matches at dinner, fights over the Dora bike and lots of hair pulling. This does not paint a real rosey pciture in my head for their teen years. Thankfully, Gma Karen is giving us a break this weekend and the girls are going to spend it with her and Papa. I am looking forward to catching up on laundry, cleaning, napping and reading. Neil and I might even catch a movie, since we haven't seen one since Kylie was probably 6 mo old.

We have been enjoying the beautiful weather and have been taking long walks every night. My family came over for a BBQ on monday and we had a nice time just hanging out. Well, we are off to the Children's Museum this morning. I am taking 4- 2 year olds, a 1 yr old and 8 mo old. Ky's PCA is coming with, but wish us luck!

Saturday, May 26, 2007 1:48 AM CDT

Good evening (or morning). I just wanted to wish everyone a happy memorial weekend. We will be thinking of my brother Andy and cousin BJ and continuing to pray for their safety.

We had a long week, which I am glad is done. Earlier in the week, Ava's temp went up to 105.1 and I was sure she was going to start seizing in my arms. She stayed about 102 on/off for most of the week. After spending 2 nights w/ 2 kids in bed with us, I am ready for a break!

Kylie woke up at 2am yesterday and stayed up until 9am, then crashed. She was still out at 220pm when I left for work. She had spiked a high temp, which went away about 20 min after motrin. 6 episodes of Elmo later, we were ready to start our day. She worked ver hard in therapy this week. She had her intensive program tues and thurs, then a 35 min drive home, followed by another hour of therapy. On both days, she was having lunch and her arms started shaking super bad and she could barely get her cup to her mouth. She crashed soon after. Not sure if it was seizure stuff or just her being super tired. Regardless, we have not seen any of her typical seizures in over a week. Keep the prayers coming! We got our most recent report back from Dr Frost's office, which said she was "mildly delayed, mainly in her expressive language". Never thought I would be happy to see "mildly delayed" on anything pertaining to my kid! They saw her a month ago and since then, her language has excelled. I LOVE listening to her talk!

I'm going to crash but I hope you all have a great weekend! We are going to work hard on potty training this weekend. Ava has been doing great with it and Ky went 4x this week. I know they are still young but we'll keep working on it.

Have a good one!

Monday, May 21, 2007 2:35 PM CDT

I hope everyone had a wonderful weekend. Neil hung out w/ the girls friday evening while I worked and he let me sleep in on saturday. We spent sat running errands, cleaning and getting ready for my cousin's baby shower, which was yesterday. It turned out very nice, except Kylie fell asleep during lunch and slept the entire day. Ava totally missed her nap, so she went to sleep at 5pm and slept until 7am this morning. Both girls are sick right now. Ava woke up w/ a temp of 101.5 and was super crabby. I brought in to the dr for an ear recheck and she thinks it is just a virus. As soon as we walked in the door from the drs, her temp jumped to 103 and she started shaking and twitching. Of course, I'm freaking out that my healthy kid was going to have a seizure, so I loaded her up w/ motrin, have her a bath and she was out.

Kylie woke up at 3am crying and pretty much cried until 730am. She finally crashed around 8am and slept for a few hours. She has been super emotional/crabby lately and we finally think we know why. The entire back part of her throat/roof of her mouth is red and excoriated, as well as having white patches. She has a nasty case of thrush, which the dr thinks may be down her entire GI tract, (heance the crabbiness, gas, preference to sleep on her tummy, etc). Her lymph nodes are also pretty swollen. Starting on the antibiotic last week probably aggravated things. Hopefully the antifungal will help.

I don't want to say this out loud because it always jinxes us but the monster is on vacation. The last seizure we saw was late thurs morning. She has seized everyday, multiple times a day, since early Jan. Early last week, she was up to about 25-30 seizures a day. The break these last few days has been wonderful. The last time she had a break, it lasted 9 glorious months. Keep all fingers and toes crossed!! Ky's speech has been amazing lately. She is now saying entire words instead of just the beginning~ Mommy, Daddy, Jody, puppy, not me!, Dora, stick, Laura, Sue!!, water, Meeeoooooooow!, Boyzzzzz and No round up her newest favorite words. Her therapy program is going well and she continues to improve every day. Her ped was amazed today to see her progress.

I am going to add the walk pics this afternoon/eve!

Tuesday, May 15, 2007 7:01 AM CDT

UPDATE Thurs 10pm~ Ky started on a new antibiotic tonight, hoping to knock her sinus infection out quickly. She has been miserable this week. Her seizures have been horrible as well, so her gabatril was increased this morning. She actually had a better day seizure wise. We did not even see any this evening and she probably had a third of the amonut if seizures overall, compared to the past few days. She has been pretty chatty this week. I forgot to share her funny story from the walk. Ky was w/ her PCA, who was talking about how her son used to put his hand down her shirt when he was younger. A few minutes pass and Ky starts pointing to her chest, (each side!) and blurts out, "Boobs! Miiiiiiiiine!" She can't quite get "Grandma" out but she has got "boobs" down pat! If I ever get 10 minutes to my self, I'll update the pics from the walk!

Good morning. I am still recouperating from this weekend but what an amazing one. To all of you who came out to "Step Forward" ~ thank you! We had an amazing group of people surrounding us on a beautiful day. And to those of you that could not be there but donated to our cause, we are equally greatful to you all. It was so clear to us on saturday what a huge network of support and love our daughter has. We had a huge team and were one of the top 2 teams that raised the most money to help cure TSC! Our final count showed we raised about $6800 and we still have more money coming in! I want to give a special thanks to Gma Sue, Linda M and Laura T, our top three fundraisers. You gals rock! Jessi~ thanks as always for the balloons and set up, to Dan for facepainitng, to Jody, Andrea and Sue for watching the girlies, to my dad and Grandpa for manning the grill, to the Winter Carnival Crew~ you guys made this year's walk an experience we will never forget! Beecher Crew~ you guys amaze us and we love you all so much!

The craziness of the past week is starting to settle down. Kylie is battling a sinus infection at the moment~ drainage from her nose, fever, cough and just feeling crummy. I'll give her doc a call later. Her seizures have been horrible as well. They come in spurts of a bunch in an hour, then a break for a while, a few back to back, a break and so on. She had one yesterday that lasted 1 1/2 minutes. She has also been having a jerky arm and funky eyes. I think going off the lyrica was another bad move. We'll see how she is after the sinus infection clears up.

Please continue to keep baby Issac in your prayers (www.caringbridge.org/visit/babyduffing), as he will have surgery tomorrow. Also keep my cousin BJ in your prayers, as he recently lost a few good buddies in Iraq and is missing his family at home, as well as for my brother Andy. He will get to come home for a quick visit in July, then off to Iraq.

I'll try and add new pics later today. Have a great day!

Thursday, May 10, 2007 4:24 PM CDT

***Please keep baby Issac in your prayers. I work w/ his mom and he was born a few days ago w/ a diaphramatic hernia, what my cousin's daughter Maddie had. www.caringbridge.com/visit/babyduffing He needs lots of prayer warriors!***

The big day is almost here!! To Kylie's Hope team~ we will be meeting at 9am Saturday morning, under the covered picnic ground area in Como Park, located on Midway Parkway and Horton. We will be in the Kylie's Hope t-shirts (chocolate brown w/ pink lettering). We pick up the shirts tomorrow, so keep your fingers crossed they turn out ok! =) Praying hard for NO rain, or that it at least waits until after the walk to let loose. We should have a big crew behind Ky and can't wait to see you all! Kylie has been having LOTS and LOTS of seizuures this week, which are longer and more intense than they have been. She finished the lyrica on sunday night and we increased the gabatril on wed. Unfortunately, she has been having so many that her little sister Ava has decided that is a good way to get attention. We think Ava is actually pretending to have seizures. After Ky has one, Av lays her head down or looks down, just like Ky, then gives us the devils grin. Not exactly the trait I envisioned her learning from her big sis when I pictured having 2 little girls. It is pretty funny!

I'll update again after the walk. If anyone gets lost on saturday, my cell is 651-329-0427. See you there!!
___________________________________________________________

If anyone plans on joining Kylie's Hope on Saturday, May 12th (the day before Mother's Day), please register on-line, http://eCommunity.tsalliance.org/NETCOMMUNITY/Page.aspx?&pid=292&srcid=302&erid=20182&frsid=68

(you can copy the link above). If you can't join us and would like to pledge Kylie, we would really appreciate it!

*** If you signed up on-line, please try to enter your pledges in on-line. Long story but will make things easier in the long run!****

If you ordered a t-shirt, please make checks out for $5.00 each and ~
Send to~ Maria Gibbons
1784 Pascal St
Falcon Heights MN 55113
riau2@aol.com

Sunday, May 6, 2007 8:00 AM CDT

Good morning. The days seem to get away from me and I haven't had a chance to update as much. We have been enjoying the weather and have been spending a lot of time outside. Both girls saw the ped on thurs, Ava for her 15 mo check-up and Ky for her recent "emotional breakdowns". Wed night, Ky was up from 3am-6am. The ped said one of the tubes in her ear is plugged and her 2 yr old molers are coming in. She started on drops and things seemed to improve a bit over the weekend. The dr thinks she is having pain and pressure, hence the "breakdowns". Ky and Av are now 4 lbs apart, 30lb and 26lb, respectively. Ava is in the 90th or ht and wt, while Ky is now in the 75or both.

I got home friday night from work and crawled into bed shortly after 2am. As soon as I laid down, Miss Kylie decided it was time to wake up for the day. She stayed awake from 2 am until around 12pm. Thankfully, she slept all night last week but was up bright and early. She is exhausting me! But, her cuteness makes up for it.

The seizures continue, usually about 10 or so a day. Sometimes more, sometimes less. She will get her last dose of lyrica tonight and then she will be down to 4 seizure meds. We increase the gabatril tomorrow. We see Dr Frost again in July. Hopefully we will have better control by then, as we do not want to do the VNS. Ky had her port flushed on wed and low and behold, they got blood drawn off it. It works! Now we can avoid the dye study.

Her speech continues to progress and her walking has been great the past few days. I talked w/ her PT and she doesn't know if her gait will ever be perfect, since most of the meds she is on can cause ataxia. Physically, she has all the pieces there to walk like a regular kid. However, she has a drunk gait that might just be her. They are going to work on running and jumping with her in the next few weeks. She starts her new therapy program in Burnsville this week. She will go 2 mornings a week, so keep your fingers crossed this helps.

We have Ky's IFEP meeting tomorrow, with all of her therapists and school team. We are most likely sending her to preschool a little early. She will go for the month of July, have August off and then start up again after Labor Day. I can't believe my baby is going to go to school! She won't be three until the end of September, so she will be in preschool for 3 years before she goes to kindergarden.

As usual, we have been super busy. Once May is over, I can breathe a huge sigh of relief. We had our garage sale over this past weekend, which was a huge success. I will be busy this week with preparations for the walk, which is on sat. If you ordered a t-shirt, please send a check for $5 made out to me, as soon as possible. The order should be in by the end of the week. If you are not going to be at the walk, please let me know, so I can get it in the mail to you.

Thanks for checking in with us. I'll update again soon!

___________________________________________________________
If anyone plans on joining Kylie's Hope on Saturday, May 12th (the day before Mother's Day), please register on-line, http://eCommunity.tsalliance.org/NETCOMMUNITY/Page.aspx?&pid=292&srcid=302&erid=20182&frsid=68

(you can copy the link above). If you can't join us and would like to pledge Kylie, we would really appreciate it!

*** If you signed up on-line, please try to enter your pledges in on-line. Long story but will make things easier in the long run!****

Also, we are having shirts made for Kylie's team. If you would like to order one to wear on the walk or just to have, please send a check to me by May 1st. ***The cost per shirt is $5.*** Email me and let me know the number of shirts you want and the size. Thanks and I'll update more later.

Send to~ Maria Gibbons
1784 Pascal St
Falcon Heights MN 55113
riau2@aol.com

Sunday, April 29, 2007 11:57 AM CDT

What beautiful weather we are having! Unfortunately, I have spent most of the weekend working but the girls got out for a walk today with Auntie Kari. Nothing new with the girls. Kylie continues to seem very emotional, crying at the drop of a hat and keeps pointing to her mouth. I'm going to call her ped tomorrow, just to get her opinion. We also need to decide what we are going to do with her port.

We are on the countdown for the walk. Less than 2 weeks away! I am putting the Kylie's Hope t-shirt order in on tuesday, so if you haven't ordered one yet and would like to, please email me by monday night. They are $5 each. If anyone has already sent me a check for an amount more than $5 per shirt, please drop me an email and let me know if you would like the extra money returned to you or donated to the TS Alliance. Keep praying the weather stays nice! We are having a big garage sale this upcoming weekend and we would love weather like today for the walk.

Please keep my co-worker, Jane, in your prayers. She was diagnosed recently with cancer and is such an awesome mentor and asset to our hospital.

Happy Anniversery Nana & Papa! We love you both soooo much!! Love Ky and Av

_______________________________________
If anyone plans on joining Kylie's Hope on Saturday, May 12th (the day before Mother's Day), please register on-line, http://216.235.201.165/NETCOMMUNITY/Page.aspx?&pid=292&srcid=302&erid=20182&frsid=68

(you can copy the link above). If you can't join us and would like to pledge Kylie, we would really appreciate it!

*** If you signed up on-line, please try to enter your pledges in on-line. Long story but will make things easier in the long run!****

Also, we are having shirts made for Kylie's team. If you would like to order one to wear on the walk or just to have, please send a check to me by May 1st. ***The cost per shirt is $5.*** Email me and let me know the number of shirts you want and the size. Thanks and I'll update more later.

Send to~ Maria Gibbons
1784 Pascal St
Falcon Heights MN 55113
riau2@aol.com

Wednesday, April 25, 2007 10:06 PM CDT

Good evening. Yesterday we had our appt w/ Dr Frost. We are going to continue to increase the gabatril and she will be off the lyrica by the beginning of May. Ky had 2 seizures in front of Dr Frost, so at least they can see she is still having them. If she continues to have seizures after the med increase, he is going to get her off the transene, so she can go on clobesam ( or something that sounds like that!) It is only available in Canada but should be FDA approved soon. There are also 3 new seizure meds that should be on the market in the near future. So, I guess we will try those and most likely cross them off our list. Dr Frost said he is considering the VNS (vagal nerve stimulator) for her. He said it would most likely decrease her seizures by 50ut in reality, what is 6 seizures day verses 12? She would still be having them and it's just another surgery to put her through without a promise of success. So, we'll keep plugging along with the meds and keep our fingers crossed. Aside from the seizures, he said she looks great. Developmentally, she's pregressing nicely. She is putting 2 and some 3 words together. It's so fun to see! Between her and chatty Ava, is pretty loud around here.

Ky also saw the dentist today. We are going to watch it and they will check it again in 2 months. She actually did great w/ her xrays. Her tooth has come back down some. The dentist said we won't know if her permanent tooth is damaged until it comes in. We weren't real confident w/ the dentist, so hopefully we won't be kicking ourselves in a few years!

She is also going to see a dermatologist. She doesn't have any of the TS skin manifestations but has had this chronic rash/dry skin on her cheeks since she was 6 mo old. Not sure if it is med related or just her but we are going to see if they can do something about it. Not that we are vain or anything. =)

We have been crazy busy. If I have failed to return emails/phone calls, try again! As soon as May is over, I am going to plan a little R & R for myself. Yesterday we went to the Children's Museum and the girls had a blast. They were all over the place. Kylie has been having crying episodes lately, which has been concerning me a bit. She randomly cries, out of the blue. It started after she fell on sunday, so I am assuming her tooth is bothering me. She has probably cried more this week than she has her whole life. Hopefully she will feel better soon. Hope you all have a great week!
___________________________________________________________
If anyone plans on joining Kylie's Hope on Saturday, May 12th (the day before Mother's Day), please register on-line, http://216.235.201.165/NETCOMMUNITY/Page.aspx?&pid=292&srcid=302&erid=20182&frsid=68

(you can copy the link above). If you can't join us and would like to pledge Kylie, we would really appreciate it!

*** If you signed up on-line, please try to enter your pledges in on-line. Long story but will make things easier in the long run!****

Also, we are having shirts made for Kylie's team. If you would like to order one to wear on the walk or just to have, please send a check to me by May 1st. ***The cost per shirt is $5.*** Email me and let me know the number of shirts you want and the size. Thanks and I'll update more later.

Send to~ Maria Gibbons
1784 Pascal St
Falcon Heights MN 55113
riau2@aol.com

Monday, April 23, 2007 8:15 AM CDT

Good morning. What a beautiful weekend! We spent most of the weekend outside, working in the garden. Ava and Kylie "helped" pull weeds yesterday, (tulips) and had a blast just being outside. The girls did have a few injuries, bloody lips, scuffed chin, etc but Ky did fall off her bike yesterday and banged her mouth on Ava's bike. Her gums and lip are swollen, so it is hard to tell but we think one of her big teeth is pushed back. I'll probably call the dentist later but not much they can do, since it is a baby tooth. I just hope it doesn't turn black and fall out!

Ava had to go into the ped on saturday, for another double ear infection. I am concerned all of these infections are damaging her hearing but I guess only time will tell. The dr also started both girls on antibiotics, since their rashes still have not cleared up.

Kylie continues to have seizures, maybe 10-12 a day or so. We decrease the lyrica today and increase the gabatril, so we'll see what happens. We see Dr Frost tomorrow afternoon, so hopefully we will have more of a game plan.

We are going to try and go to the Children's museum tomorrow and Ky has a busy week of therapy ahead of her. Thank you to everyone who has signed up to do the walk and to those who have ordered t-shirts. Your support means so much!
___________________________________________________________

If anyone plans on joining Kylie's Hope on saturday, May 12th (the day before Mother's Day), please register on-line, http://216.235.201.165/NETCOMMUNITY/Page.aspx?&pid=292&srcid=302&erid=20182&frsid=68

(you can copy the link above). If you can't join us and would like to pledge Kylie, we would really appreciate it!

Also, we are having shirts made for Kylie's team. If you would like to order one to wear on the walk or just to have, please send a check to me by May 1st. The cost per shirt is between $5-7. I should know for sure soon. Email me and let me know the number of shirts you want and the size. Thanks and I'll update more later.

Send to~ Maria Gibbons
1784 Pascal St
Falcon Heights MN 55113
riau2@aol.com

Thursday, April 19, 2007 00:50 AM CDT

Good evening. We are loving the beautiful weather! We have gone to the zoo, the park and have taken many walks this week. Aside from continuing to have seizures, Kylie is doing simply fabulous. She is walking pretty well, dancing her little rear off and even running a bit. She know some of her colors, some letters and numbers, most of animal sounds and almost all of her body parts. But it is her speech that is amazing us. Her therapist and I were counting her words today and I finally came up w/ about 80+ words that she can say, aside from all of her signs. She is also starting to put more words together, ("No mama! No, mine! All done. Go down"). I am hoping she doesn't say "kitty" in public, since it come out "titty". =) We just love listening to her, wondering what she is going to say next. I love hearing her say her name~ "Kywee Joooooooo".

The seizures continue to frustrate us but are becoming our norm. She only had 2 on Sunday but then 8-10 today. Before she had one today, she said, "Oh No!" Not sure if she knew she was going to have one or not but makes me wonder. We went down on the lyrica on monday and will go up on the gabatril next monday. We see Dr Frost next week, so we'll see if they make more changes. She will start at her new tharapy program on May 8th. She will go 2 days a week for 1 1/2 hr sessions, for a month or so. We are hoping to see some positive changes.

We have Ky's IFEP meeting in a few weeks and will be discussing wether or not we will be sending her to a summer progrsm through the school district, which would help prep her for pre-school in the fall. I can not believe my baby will be starting school in a few short months. We will be working hard at potty training this summer.

Ava has also been doing pretty good. Her ears continue to bug her and I may have to bring her in for another check. she is constantly pulling at them and has been crabby the last few days. Although, she tends to be very diva-like, so it is hard to tell if she is feeling crummy or just thinking she needs to be the princess. Although she is still not walking, she is pulling up & cautiously cruising. She cracks us up daily, with her funny faces and gestures she makes. She loves talking with her lips pursed and follows Kylie around everwhere.

Neil and I continue to stay busy. He has been working on the 3rd Annual Kylie's Hope Charity Golf Tourney, which will takes place in august. He starts softball soon and we will start a co-ed league together in a few weeks. He also continues to work on our many home improvement projects around the house. I have been busy working on the TS Walk, which is rapidly approaching. Thank you to all who have signed up to walk with us and to those that have sponsered Ky. Reseachers think there will be a cure for TS in Kylie's lifetime and it will be because of the generousity of people like you that will help make that dream come true. I have also been working on getting my garage sale together~ remind me not to do another one for a LONG time. I have been busy with work and the kids and am now working on the SBH 10 year high school reunion. I can't believe I have already been out for that long! So, we are busy as usual. We are hoping to get away somewhere this summer but haven't really started working on anything yet. I should get to bed but I hope everyone continues to enjoy the beautiful weather!

PS Congrats to Alicia and Joe on your new baby boy!

Sunday, April 15, 2007 10:22 AM CDT

Good morning. We are very happy to see a change in the weather! We are feeling better about things and I really think the weather is helping that! We took Kylie to her assessment on friday, to a therapy program in Burnsville. I think it was the assessment that helped turn our moods around. We love the place and they seem very good with her. The man who runs the program told us that Kylie is "very high functioning" and in fact, is too high functioning for their classes. Whoo-hoo! He said she is a bit behind in her gross motor skills and her speech but he thinks she will catch up nicely and should get to her developmental age level. It was so nice to hear! He did suggest that we buy her a pair of high top shoes, which we did. I can not begin to tell you what a huge difference it has made! She has been running around all weekend. She is going to do 1:1 therapy 2x a week for a month or so. Hopefully it will help her catch up! She has had a long day today. She woke up at 3 am today, full of energy and ready to go. I was not please, as I had to get up at 530 for work. She kept leaning over me and yelling, "BOO!" in my face. =) My sister is babysitting today, while Neil and I work. Unfortunately, our little dog bit Ky in the nose this morning, breaking the skin. We will be looking into putting her to sleep or finding a home for her without kids. She is a 9 1/2 yo shih tzu, who is sweet as can be, yet has not adjusted well to us having kids. The kids are constantly mauling her and it is not fair to her, or them, to keep them in the same home. I will add that to my list of things to do. I went out with the girls friday night, for a little R & R. Neil spent most of yesterday putting in new windows and a new front door, (we won't tell anyone it's upside down, right Sue? =) We have also been busy getting our garage sale stuff together, which will be the first weekend of May. Tomorrow is my mom's 50th birthday, so we are having the family over for dinner. We have a busy week of therapy and are planning a trip to the MN Zoo. Have a great day!
____________________________________________________________

If anyone plans on joining Kylie's Hope on saturday, May 12th (the day before Mother's Day), please register on-line, http://216.235.201.165/NETCOMMUNITY/Page.aspx?&pid=292&srcid=302&erid=20182&frsid=68

(you can copy the link above). If you can't join us and would like to pledge Kylie, we would really appreciate it!

Also, we are having shirts made for Kylie's team. If you would like to order one to wear on the walk or just to have, please send a check to me by May 1st. The cost per shirt is between $5-7. I should know for sure soon. Email me and let me know the number of shirts you want and the size. Thanks and I'll update more later.

Send to~ Maria Gibbons
1784 Pascal St
Falcon Heights MN 55113
riau2@aol.com

Thursday, April 12, 2007 10:00 pm

Good evening. It has been a very long week, (and this is going to be a long post). We got news yesterday that was both a sigh of relief, yet totally devestating at the same time. We have lost our "safety net" ~ Kylie is unable to have surgery to stop her seizures. Unfortunately, the seizures are coming from both sides of her brain and she is even having some that they can't tell where they are coming from. I had a feeling this news was coming but it was a blow to hear it out loud. They think that if they proceeded with surgery, it would make her seizures even worse than what they are now. We are feeling very overwhelmed at the thought of a life time of seizures, meds and sickness. Although surgery scared the heck out of us, it was always the thought in the back of our minds that could potentially stop her seizures for good. Now that the prospect is gone, I feel like our hope is gone too. I guess I won't have to worry about them shaving her hair, (of course, my worst vain fear!)We just have to pray the meds start working again. She only had 5 seizures today, which is huge progress, but still not a normal life for a 2 year old. She is on 5 seizure meds and continues to seize. The meds greatly affect her balance and we talked with the PT about the prospect of her using a walker when she goes to pre-school in fall, if her gait is still unsteady. I'm sure that won't go over well with her but we'll see. She gets easily fatigued walking distances greater than 20 feet or so, so this may be a problem.

Being ataxic does not go well with being 2 either. She has turned into a total monkey, climbing up on everything and everything. Today we found her standing on top of the computer table, looking out the window. Later, I ran upstairs to get Ava up and heard a loud crash from down stairs. Ky had climbed up onto the table and fell off. A few tears and all was well. She was standing on the chair today and called her a "little monkey", (although another term was floating in my head), and she puts her hands in her armpits and says, "Ooo-Ooo!" Lil' stinker! Her new favorite movie is "Happy Feet" and if you ask her if she has happy feet, she starts doing the penguin dance. =)

Kylie's vocab has really taken off. Yesterday, while working w/ her PT, she said "geen! (green), booh (blue), ewwo (yello), boom," among other things, as well as my favorite, "I deed it!" while picking up a toy from the floor and showing off her squats.
I guess we have reason to be hopeful but we don't have a lot of options. We will continue to mess w/ her current meds and they are going to try and get her in a clinical trial for a new med. I really don't feel good about my kid being a ginnie pig but what else do we do? I am so sad about all this and I just can't imagine a lifetime of feeling this way. Forever seems like a really long time to be sad. And Kylie looks so tired lately~ tired eyes good chunks of the day. I am debating to push to keep her port in or not. When it works, it is great. It is so much less traumatic for her when she needs labs or IVs. She hadn't had her blood drawn through a vein for ove a year and it still took 5 pokes to get blood. If I can help make her life even the slighest bit easier in any way, I will do it. Unless a test is absolutely neccessary, they will not be doing it to her. I feel like our trip to Detroit was a complete waste of time. We were told there that she would be an excelliant surgical candidate but her EEG did not match up with the PET scan at all. We are going to try and keep her out of the hospital if at all possible and to get on with our lives. Have I said lately how much I HATE, HATE, HATE TS? Cause I really do.

We said good-bye to my brother last night, as he headed off for his training for Iraq. Please continue to keep him in your prayers. We had a low key Easter. I went w/ my parents, sister/SIL and brother to mass. I remembered why we don't take 1 & 2 year olds to church. Ava spent most of the service making faces at the people behind us, scrunching up her face and wrinkling her nose, when she wasn't screaching at the top of her lungs. Kylie wasn't much better, so we spent most of mass in the back of church. We went out to brunch and then home for a nap. Neil met us after work and we went over to my mom's for dinner. We went to Andy's ceremony on tuesday~ very emotional~ and Ava made more faces at the people behind us. We went to Kari's softball game, where more faces were made. Then, off to dinner at the Cheesecake Factory, for a 2 hr table wait. Ava was good this round, as food was involved. Tomorrow, Neil and I are taking Ky to Burnsville, to get assessed for a summer therapy program. I am hoping to intensify things a bit over a short period of time, to help her get ready for pre-school. I am having dinner w/ friends tomorrow eve and have classes for work all weekend.

Kylie continues to be sick w/ a junky cough/nose. I am hoping it clears up soon. I am suspecting she has a sinus infection but am hoping it will clear up soon. We see Dr Frost in a few weeks, so hopefully we will know more then. That's it for know. As our faith wavers, we continue to pray for Kylie's miracle.
_______________________________________

If anyone plans on joining Kylie's Hope on saturday, May 12th (the day before Mother's Day), please register on-line, http://216.235.201.165/NETCOMMUNITY/Page.aspx?&pid=292&srcid=302&erid=20182&frsid=68

(you can copy the link above). If you can't join us and would like to pledge Kylie, we would really appreciate it!

Also, we are having shirts made for Kylie's team. If you would like to order one to wear on the walk or just to have, please send a check to me by May 1st. The cost per shirt is between $5-7. I should know for sure soon. Email me and let me know the number of shirts you want and the size. Thanks and I'll update more later.

Send to~ Maria Gibbons
1784 Pascal St
Falcon Heights MN 55113
riau2@aol.com

Saturday, April 7, 2007 4:14 PM CDT

Kylie has been a sick kiddo the last few days. She was running a low temp on thursday, then woke up at 3am with a 103 temp. She was wired! We had a middle of the night party with Elmo and she finally fell back asleep. She has had a bad cough and junky nose as well. Ava has the same, as well as a double ear infection. Neil took the girls both to the dr yesterday, to have their rashes looked at. They both have folliculitis and will be on antibacterial cream for 2 weeks. It is something Ky picked up from the hospital in Jan. Yuck! We talked w/ the ped about Ky's port and the plan is to wait until we hear back about how the surgical conference went. If surgery is a go, we are going to leave the port in and have another dye study done. She has had this done one other time when the port didn't work. Dye would be injected into the port and an xray would take pictures, to see if there is a clot or kink. It is most likely a kink or the cath is up against a wall, since 2 rounds of TPA did nothing. If she will not be having brain surgery, we will schedule surgery to get the port out. The seizures continue and she was loaded last night. She has had fewer today but just had a longer one. We are going out tonight w/ my brothers and sister/in law/ g-friend. Tomorrow, Neil has to work, so the girls and I are going to an early mass w/ my parents and siblings, then out to brunch. We will meet up w/ my mom's family tomorrow evening for dinner. I hope you all have a wonderful, very blessed Easter. Much Love~ The Gibbons Family

Saturday, April 7, 2007 4:14 PM CDT

Wednesday, April 4, 2007 12:44 PM CDT

830pm~ Hey all. We are home and the girls are snuggled in bed. My chat w/ Dr Ritter went well. It looks like most of the seizure activity is coming from the right side, in the frontal central region. He did say that they is an area on the left frontal that is abnormal 80f the time as well. So, he feeld most of the activity is coming from the right but will let Dr Frost see what he thinks. We will be starting one of the last meds left to try on our list, which is gabatril. It apparently works differently than any of the other meds she has been on but it only works for a small percent of kids. He said people laugh at him when he puts kids on it but then he laughs at them when it works. =) So, we will see. She'll start on it in the morning and she wont be on her full dose for 8 weeks. She will also start coming off the lyrica on friday. Keep your fingers crossed on that one! On tuesday, Dr Ritter is going to present Ky to surgical conference. It consists of a group of Drs that will sit down and look at Ky's case and decide if they should go ahead and persue surgery. Since we really don't have any other options, I have a feeling it will be a go, unless Dr Frost and Ritter disagree on the EEG findings. We will follow-up w/ Dr Frost in 3-4 weeks and will find out what happend at the conference then. If surgery is a go, we will be expecting it to happen in about 3 months or so. So, I have about 3 months before I have my long awaited nevous breakdown. =) We are fully stocked w/ diastat (8 syringe fulls, with a refill order for 12 more) and plan on enjoying our time at home. We will have to bring Ky back to the ped, since her butt looks worse and will have to schedule an out-patient surgery for her port. She was feeling much more like herself today- running wild all over the unit, climbing on the chairs, playing hide and seek in the halls. She even played kick ball w/ Auntie and didn't fall down! Since she can now identify the word "Jo" on her id band, she recognized it on the nurse Mary jo's badge. She pointed at the Jo in her name and said, "Jo". Smart cookie! Please continue to keep our girl in your prayers and that maybe the seizures could go on vacation again! Until next time~
_______________________________________

545pm~ We are heading home! I talked w/ Dr Ritter, a plan is in place and I'll fill everyone in later tonight!

Please keep our friend Kierstin in your prayers. She also has TS and will be 2 next month. She had brain surgery 5 mo ago and was seizure free until last night, when she had a status seizure and is now in the PICU on a vent.
www.caringbridge.com/visit/kierstindublinske
_______________________________________

3pm- The port is coming out. We are waiting to speak w/ a surgeon and should know more later. Sighhhhhhhhhhhh.
_______________________________________
Kylie got her wires off a little bit ago and hopefully we will be home in the next day or so. Dr Ritter said she had plenty of events for him to look at, so hopefully we will know later today where the focus is. She did good during the night, then started up again this morning. Our huge problem has been again been w/ her port. They tried to draw labs this morning and could not get any blood. A 2 hr round of TPA did nothing. She had 4 pokes to get blood this morning, so we really do need the port fixed. We are waiting to see what heme/onc says. She is going to have a baseline OT eval in the morning and her ped will stop by as well. Dr Ritter is going to talk w/ Dr Frost to see what the med plan will be. Hopefully I will have more to update later.

Tuesday, April 3, 2007 10:49 AM CDT

615pm We met w/ Dr Ritter and we are going to see what happens w/ Ky. She is continuing to seize, although not nearly as often as she was on sunday. The little bugger fell asleep during the EEG hook-up and napped for a few hours, so of course Neil thought I was crazy for telling him it was going to be bad. =) She woke up and seemed out of it for the afternoon. That is, until Ava got here and then she perked right up. Dr Ritter asked if we considered the Ketogenic diet and I almost laughed. There is no way we will even try the diet. Kylie loves to eat and I can not take that away from her. Plus, her and Ava are so close in age, and with the daycare kids, it just seems cruel to even attempt it. Not to mention, I don't know of it working for any TS kids. So, our next options are meds and surgery. I have a strong suspcion the seizures are coming from both side of the brain, so it might be tricky to do surgery. Do we put her through such a huge ordeal to maybe still have seizures afterward? But, if it could help to decrease some of the meds she is on and potentially save her from med related organ damage down the road, it might be worth it. I guess only time will tell. From the sounds of it, she is going to need another MRI in the near future, to at least see if things have changed at all in the last year. I discussed my concerns about the MSI as well, so hopefully things will go through more smoothly this time around. Dr R peaked at Ky's horrible bottom rash, which is most likely a yeast or similar infection, so she is starting on some cream and her ped will pop in on thurs.I just spoke w/ Dr Ritter's nurse and asked how long she thought we would be here this go-around. She said, "Well, with Kylie you just never know. She never seems to follow a straight path". I have a feeling we may be here longer than I was hoping. As for a few cute Kylie stories~ when we checked in at the registration desk this morning, Ky had her baby doll, Anna, w/ us. She was showing the desk people her favorite doll. We went up to 7940, while Neil was parking the truck. He went to check in and the desk people asked the patient's name. He said Gibbons and the lady said, "Oh, Anna? They just went up." =) Everytime Ky gets a med, the nurse checks her ID band. Now, she points to it and says, "Jo", since she can't quite get the Kylie part out. =) They did a speech eval on her today, to get a baseline on where she is at prior to changing meds/surgery, etc. For her expressive language, (what she can actually say), she is at around 18mo, which stinks, but she is talking more everyday. As for her receptive language, (what she understands), she scored at 21 mo, which isn't too far off. Big thanks to the visit from Amy and Katelyn~ Ky loves her bunny!, as well as to Auntie Andrea and Uncle Andy~ lunch was yummy!
_____________________________________
Good morning. We are now on 7940, with a penthouse view of the Cathedral. They are hooking Ky up to EEG now. She is snug in bed w/ dad, Elmo and we are watching, "Elmo Visits the Doctor". How fitting. Kylie had another rough evening and night and I am boderline about to freak out on someone for lack of follow-ups. The clinic was supposed to call in an order for diastat to our pharmacy yesterday, since we used up our supply over the weekend. When we called to see if it was ready, we found out that no one called it in and by the time we would've got ahold of the dr, the pharm would be closed. We improvised and used old diastat, which was not even the right dosage. It worked for a few hours and then she started up again. Things have been fairly calmer this morning, maybe only 10-12 seizures so far. I asked again about the MSI when we got here and Ky's nurse (one of her favorites!), found out that a letter was submitted to my insurance company when we were here in Jan but the clinic never heard back. So, now it's April and we have to start the process all over. I have asked about the MSI multiple times the past few months and everyone said they would "check on it". Well, the ball got dropped somewhere and now we will be waiting again. I'm about to call and set it up myself. So, if everything works out and she is able to have surgery, we will have to hope I have insurance. Contract negotiations are coming up and things are not looking pretty. Anyways, we are in 7943 and the # is 651-241-7911. We actually have our own room this time around, which is always nice. Keep your fingers crossed this will be a short stay. Huge prayers for an identifiable seizure focus and that it is one that can be fixed!! More later...........

Monday, April 2, 2007 10:26 AM CDT

UPDATE: Ky will be admitted tomorrow at 930am, unless she continues to get worse. Then she would be admitted today. They are going to decrease her felbatol as well, since the increase didn't help. More later.....

After a horrible weekend, Kylie's morning isn't faring much better. She went to sleep around 8pm last night, as soon as she climbed up into Grandma Sue's arms. She snuggles right in and was out. I took her up to bed and an hour later, the seizures started up again. She slept through them but was going every 5-10 minutes. So, at 1130, we loaded her again. We didn't notice any seizures during the night but she was super restless, wriggling around all over the place. She was up for awhile around 3am. I gave her meds to her early and she started seizing during it and has continued to do so all morning. Dr Frost's office called back this morning and they want to admit her back to 7940. The drs were in rounds this monring but Carol (Dr F's nurse) was checking w/ the unit to see if they have a bed available. If they don't, they will try and come up w/ a plan for the rest of the day and admit her in the morning. I asked what they will do different for her in the hospital that we can't do at at home, so she said if they get enough seizures recorded, (won't be a probelm, I'm sure!) Dr Frost will probably be ok w/ doing med changes out-patient. We do not want to be in the hospital for Easter. So, hopefully I will hear back soon. Our sweet girl needs a break.

Sunday, April 1, 2007 12:05 AM CDT

Kylie has continued to seize all weekend. She has been unable to walk for the past 2 days. Whether it is from the dilantin she got on fri or from the seizures, we are not sure. The neuro on call thinks it is from seizing so much. She had 20 seizures from 745-10am, so she got loaded w/ diastat. She had a break for an hour and has started up again, he said we could load her 1 more time today and if it doesn't work, to call him back. I am hoping we can make it until morning, when I can talk w/ Dr Frost. She has never regressed in any of her skills w/ any of her seizures, so I am hoping it's just from the meds. If not, I think we are in big trouble.

Friday, March 30, 2007 5:38 PM CDT

10pm So, she started seizing every 10 minutes, so we loaded her w/ dilantin. She was a walking nightmare, crashing into everything. Her seizures then went to every 7-8 min, then to every 5. We got her night time meds into her and she finally crashed. Dr Frost increased her felbatol and switched her lyrica around again. I forgot to mention how traumatized she seemed after getting hooked up today. I literately had to sit on top of her and hold her head still, while wires were glued all over her head and put in place w/ an airgun. She had huge crocodile tears rolling down her face and kept saying, "Mama! Mama NO!" My heart broke right along w/ hers. The next time she is hooked up will be the last for a long time, if I have anything to say about it. Hopefully, tomorrow will be a better day. Keep your fingers crossed!
_______________________________________ A few seizures during the night, 3 this morning, 1 on the way to the clinic, 1 while getting hooked up, 1 while getting disconnected, 1 while visiting on my floor, 1 when walking in the door, 1 as I type this. And 0 during the 4 hours she was hooked up. Figures. So, we have an appt w/ Dr Frost on tues, where they will supposedly come up w/ a plan. Kylie will get admitted back to 7940 the week of April 9th, so we can hopefully get some of these recorded. That is the week Andy leaves and Ky has her eval w/ the PLUS program, so hopefully we can get everything done. Well, our girl is continuing to seize, so hopefully our weekend won't be too exciting. Have a good one!

Thursday, March 29, 2007 6:35 PM CDT

Kylie should perform well for her EEG tomorrow. She has had enough seizures this evening to get loaded, but I don't want to load her in case it prevents her from "performing" tomorrow. She has probably had 7-8 seizures in the last 1 1/2 hours. Unfortunately, she is having them again in her sleep as well, so we are going to try and take turns staying up w/ her tonight to see how many she actually has. Neil has actually been the one noticing them, so I feel very guilty for sleeping right through! Most of her seizures this round involve giggling and she has fallen w/ some of them. She was pretty quiet today and she did a lot of glaring at Ava. Not sure if she has a headache, her brain is just irritated from the seizures or if she is just plain grumpy. I'll update more tomorrow after the EEG. Wish us luck!

Tuesday, March 27, 2007 7:33 PM CDT

Kylie is continuing to have seizures and will have another 4 hour EEG on friday. They said they could admit her and have her hooked up but I expressed my fear that once we go into the hospital, we get stuck there forever. With my brother leaving soon, we do not want to be stuck in the hospital. So, she will get hooked up out-patient on friday and we will cross our fingers for seizures! If she doesn't have any in that 4 hour time period, she will most likely get admitted so we can get some recorded. Dr Frost's nurse is trying to figure out what the heck is going on w/ the MSI, since we still haven't heard about it and accoring to my insurance company, neither have they. So, who knows what is going on. We are going to persue surgery, at least so we know if it an option or not. I need to know I have done all I can to let my baby have a chance at a seizure free life. And if surgery doesn't seem likely, we can mess w/ the meds again. Ky did spike a fever this afternoon and has seemed pretty lethargic. She crashed right after dinner, so we will see what pops up. It's hard to know if she could just be sick or if the zonegran is starting to mess w/ her body temp again. More later...........

Sunday, March 25, 2007 11:01 PM CDT

Good evening. Kylie's seizures are officially back. She was a little spacey yesterday morning, then had a typical seizure last evening. Today, she has had multiple seizures throughout the day. Frustrating, to say the least. We decided to up her felbatol a bit tonight but I'll put in a call to Dr Frost's office in the morning. I can handle a few seizures throughout the day but is she is going to follow her pattern, we will be in big trouble by the weekend. I'm sure she has this all planned out, since I have class all next weekend that I can not miss and we are having a going away party for my brother on sat, (who is in the Army Aviation National Guard, NOT the reserves, as I previously said- opps!)I'm sure her EEg was not read yet and even if it was, it probably didn't show anything. So, I'm not real sure where we are headed. I'm going to push for the MSI to be done soon because even if we don't get the results we want, at least I will know we have done everything possible to help Ky live a seizure free life. I find it hard to believe that it still hasn't been approved after 2 1/2 months. We see Dr Frost next week, so hopefully they will come up w/ a plan by then. We have an appt mid-April to get her assessed by the PLUS Program in Burnsville. Our friend Caroline had therapy there and they loved it.
Miss Ava is making progress in the PT dept. She has been pulling herself up onto her knees and has gotten one foot up. Not the whole package but we are making progress. She follows Kylie all over the house like a little puppy dog~ it's so cute. Maybe I can train her to be Ky's seizure dog. =)
We had a busy weekend. I worked Friday eve, so the girls hung out w/ dad, watching hockey. Sat, the girls, Gma Sue and I went for a long walk and stopped at the local coffee shop for lunch, (if you count icecream and cookies lunch!) Neil spent the entire day working on the basement, while I cleaned out closets and organized. The girls hung out w/ Auntie Kari. Today, we had brunch w/ my family and Neil picked up a big Fischer Price climber for the yard. I went shopping for summer clothes for Ky and then we all met up w/ my family for dinner, to celebrate Kari's 17th b-day. Happy birthday Kari!! We love you SOOOOOOO much!
Not a whole lot planned for the week. Ky has therapy and we might sneak in a trip to the zoo. Hopefully the weather will continue to be beautiful. We love being outside! Please continue to keep or friends Zoey and Caroline in your prayers, as well as for Miss Kylie. I keep telling her it is too nice out to be having seizures and we will not be going back to the hospital. Hopefully she will start listening to her mom soon!

Much love~ The Gibbons Family

Tuesday, March 20, 2007 10:04 PM CDT

Good evening. Kylie went in for her 4 hr EEG today, only to not have any spacey episodes. While that is great, it stinks we didn't get any on EEG. Dr Frost is supposed to look at it in the next few days and let us know if he saw anything new. I am assuming that if Kylie is still doing well, we won't hear back until our appointment next month. She did pretty good getting hooked up. This was her first real hook-up in over a year and while she didn't enjoy it, there were no tears or tantrums. Just a few "Mama!!s" and a quivering lip or two. She conked out after a few hours and slept through the entire disconnect and ride home. She seemed back to herself today and was in a good mood all day. She had speech this morning and did a good job repeating back some words.
Ava had her first session of PT and it sounds like things went well. I was at the clinic w/ Kylie when she had it but will talk w/ the therapist when she is here on thurs for Ky. Other than her lagging walking skills, she is doing awesome. She continues to go on the potty, even #2 every morning. We went out to eat last night and she had a dry diaper, so I asked her if she needed to go potty. I got a head nod and she then went on the potty. Ava is a total ham and loves to be the center of attention. I love to see how smart she is, even though in some ways it is hard seeing her pass Kylie up in some skills. She started stacking blocks this week, even though Ky just learned how in the past few months. Tonight Ava started catching a ball a threw to her and was rolling it back in forth w/ me. She didn't understand why the dog wouldn't roll it back to her, even when she put her arms out to him. It was pretty cute. She added "block" and "ball" to her vocab tonight, which is amazing to me, seeing how easily speech comes to her.
We are going to try and get Kylie in an intense therapy program this summer, so if anyone has any good ideas, please share them w/ me. We are hoping to have her go at least half days, M-F, for a few weeks this summer. I'm not sure if something like that exists for her age level, but we do have one place that is going to assess her soon. Hopefully I will have a better understanding of the program tomorrow. Although she is walking, she is super uncoordinated and falls quite often. A lot of it has to do w/ her tone, as well as the many meds she is on, so this may be how it is going to be. But, we are hoping she will be able to get a lot stronger before going to pre-school this fall. We also want to work on her speech. The tone in her mouth is pretty low still, so this is most likely contributing to her poor speech. She can say the beginning of most words but has a hard time getting the entire word out. Her OT skills have been catching up in leaps and bounds, so we aren't too concerned in that area. Of course, our main concern will always be keeping the seizures away, since they tend to wreck havoc on most everything.
On the home front, we are looking forward to Neil being off for quite a few days this weekend. I am also off, so we plan on getting a lot done. He is building me an office in the basement, so I can get my unorganized butt in gear. My brother Andy, (or "An-nee", as Kylie calls him), is leaving for Iraq in a few short weeks, so we are trying to spend some extra time w/ him before he goes. We had dinner w/ him last night and plan on going to brunch on Sunday. Please continue to pray for his safety, as he ventures into some dangerous territoy. He is a blackhawk pilot in the Army Aviation Reserves. Also prayer requests for my cousin BJ, who has been in Iraq on his 2nd tour the past few months, for our friends Zoey, Reese, Jess and Caroline, all who could use a few extra prayers, as well as for the rest of the kiddos in our lives. Extra love and prayers to the Olson family, as McKenna's 2nd b-day is on thurs. They are missing their sweet angel like crazy. We love you Muffin!!!
Reminder that if anyone would like to join Kylie's team for the TS walk, or to sponser her, copy the link under the blue Step Forward for a Cure logo and add your name.
Thanks for continuing to check in on us and for all of your love and support!!
****Congrats to Auntie Kari for getting All-Conference Honerable Mention in Basketball~ we love you!!!!!*******

Monday, March 19, 2007 1:48 PM CDT

Kylie is scheduled for a four hour EEG tomorrow afternoon. Her brain sort of has seemed to go on "vacation" over the weekend. She has been real spacey and definately seems to be checking out every so often. If we would have done a drastic med chage recently, I would think that maybe she is toxic but it seems more likely she is again having seizures. She acted like this off and on for a few weeks before her last big episode. So, instead of taking 2 1/2 weeks to get back to us and then have the seizures out of control, we actually heard back an hour after we called this morning and she got an appointment right away. Amazing! I'm not sure what the plan will be after tomorrow. We were told we will be called wed am w/ the EEG results and then should have a better plan. Just completely frustrated and totally bummed out. It gets so overwhelming thinking we have a lifetime ahead of us full of the waiting, the unknown and these darn seizures. I'll update more after her EEG tomorrow. If she is having seizures, I just pray they can find that they are coming from a specific area. More later..............

Tuesday, March 13, 2007 10:05 PM CDT

Good evening. This weather has been fabulous and I have enjoyed getting the girls outside. Saturday I had a class in the morning but met up w/ Neil, the girls and Gma & Uncle Ben for lunch. Gma Sue babysat sat night so Neil and I could go to a party. Sunday, they both went off to babysitters so I could finish the mailing for the TS Walk. If you plan on walking on Kylie's team, please be sure to register on-line. The link to Kylie's team site is located above, under the info about the walk. Huge thanks to Shannon and Jen for helping me finish the mailing, as well as for the massive home help. You guys are the best!! Tonight, the girls and I enjoyed some "normal" moments and went walking for a bit on Grand, then to Cafe Latte for dinner. We went down to 7940 to visit baby Reese and his mom. Please keep this sweet angel in your prayers. Kylie has a visit w/ the home nurse tomorrow and tomorrow eve I am making a trip down to visit Caroline at Mayo. I have been making a massive attempt to get my house in order. We are having a garage sale in May and have a room full of stuff that needs to go. I decided I am getting rid of all my baby stuff, (sniff, sniff) as well the multiple bins of baby clothes. I can't believe how big my girls are getting! Ava had an appointment w/ the ENT today and her hearing is much better. Although it's not totally normal, it is close enough and he said it is most likely because of the distractibility of her age. He also said if her tubes don't fall out after 2 years, he will surgically remove them, as they could cause a hole to form in her eardrum. As for Kylie, he will not take hers out and just hope she doesn't get a hole. Here's to hoping! Health wise, they have both been doing great. Kylie is in love w/ her "Pop-pa" (my dad) and talks about him ALL day. She carries around her little cell phone, talking to him. She even holds it up to Ava's ear and says "Pop-pa." It's too cute. Ava has been into fake-crying and is the hugest drama queen. She will "cry", then stop if you walk away from you. She then looks around the corner and if she sees you, "cries" again. Anyways, we have all been doing pretty good. Thanks for checking in w/ us!

Friday, March 9, 2007 1:00 AM CST

Here is the scoop of the week~ Dr. Frost's office FINALLY got back to be today and it has been decided they can't tell where Kylie's seizures are coming from, based on the last EEG she had done. If we proceed w/ surgery, she will need another EEG done prior to sugery. Here comes the "BUT" part. Her seizures were so subtle, the EEG didn't pick them up. Her EEG actually looked normal. Dr Frost's nurse said the as far as TS kiddos go, Kylie is "a rare breed", (haven't we heard that somewhere before?) Based on her tubor count alone, aside from all the seizures she has had, her EEG is essentially normal. And that my friends, is great news. Unfortunately, this doesn't make it look like surgery would be a great path for her at this point in time. Because her seizures are so subtle, they aren't sure if they would be able to even pick them up w/ the MSI. So, we will see how things progress. She is learning so much right now and has not had a seizure in almost three weeks. Her gait seems more off though, which is most likely from the meds and her poor shins look like she plays full contact sports. Her belly also seems to be looking much larger that usual, even despite the family genetics. =) She has not yet had an abdominal CT scan yet, so when we see Dr Frost in April, they will most likely set one up. She is looking good sinus wise and is continuing to go on the potty. As for Miss Ava, who is also still going on the potty, she has been up to no good. Getting into trouble, (example~ eating dog poo tonight- I was at work when this happened!), exerting her independance, yet reminding us daily what an unexpected blessing she was. I have been concerned that her gross motor skills seem to be lagging, so the ped had the early intervention school team evaluate her. And (sighhhhhhhhh), another one of my kiddos will be starting therapy. She will get PT 1x a week and the ped thought since Kylie is already getting private home PT, why not have Ava get it as well. On a happy note, Ava scored above her age level on her cognitive skills. I have been teasing Neil that she must get her brains from her mom and her brawn from her dad! We are attributing her gross motor skills being behind to a number of things~ being a big baby, having had so much trouble w/ her ears, that it could be causing problems w/ her equalibrium and to being so laid back. Of course, this is all spectulation. Dr Frost's nurse told me today that kids that are more verbal/cognitively ahead, tend to be more behind in their physical development. None of the doctors are concerned anything is seriously wrong, but I of course have a slight secret fear that this could be a sign of gloomy days to come. Can't we catch a break someone in this game of parenthood? I think it is our turn to sigh a breath of relief at some point. I am still waiting........
Our bright spot of the week happened last night. I took the girls, my mom and sister to Disney's Princesses on Ice. We went to the Old Spagetti Factory first, where the girls had a blast shoveling food in their faces. At the show, Kylie liked about the first 2 songs, then was squirming all over the place. Not Ava~ she intently watched the show from start to finish. She was dancing to the music and let me tell you~ the girl has got rhythm! She had an absolute blast. I should turn in for the night. I have an early morning. Have a great weekend!!

Monday, March 5, 2007 1:11 PM CST

Hi all! I'm glad to see the snow finally stopped! We are been doing pretty good here. I worked all weekend and Neil hung out with the girls. I got home from work Friday around 12:15 am and Ava was up, sobbing in her crib. I took her out and she was up until about 2:30am, then slept for a few hours, then up again. By morning, her ear was draining pus AGAIN, even though she was on day 16 of a 20 day course of antibiotics. I don't think she is hearing all that well either. She sees the ENT next week, so hopefully we will get some answers. Kylie is acually doing pretty good. No sickness and no seizures. I can't ask for much more. Since I never got a return call from Dr Frost's office (it has been 3 weeks w/o a return call, even though I left a few messages), I started the transene wean on my own. Dr Doscher was insistant she come off it within the week or so after we were discharged. They think the transene is the reason she has built up this huge tolerance to the diastat, (they has the same properties) and since we definately need the diastat in an emergency, the transene needs to go. Wish us luck! It has a super short half life and doesn't build up in the system like the other meds, so coming off super slowly should be ok.
Kylie has been up to a lot of mischief lately. Her new favorite thing to do is to open the bathroom door, climb into the tub and turn the water on. Of course, she's always fully clothed when she does it. Apparently she doesn't think I am doing a good job w/ the laundry. The girls both had ECFE on saturday morning and then we all met up for lunch. I was on-call yesterday, so we spent the day getting ready for the TS walk. I have to get all the brochures / mailings out by the end of the week, so I have been super busy with that. If you want to pledge Kylie or join our team, copy the link above to go to Kylie's team page. Or drop me an email and I'll send you a brochure. We are hopping to get a big group together this year, to raise money for TS research. We have a full week ahead of us. Kylie has an eye dr appointment in the morning, a full week of therapy, I have my 10 year HS reunion committie meeting tomorrow (yikes!), I have a class and I picked up an extra day at work. We are going to miss Auntie's basketball game tonight, so if you are reading this, GO BULLDOGS!! Please continue to pray for Caroline and Zoey's healing and for McKenna's family. Today marks 8 months since they last held her in their arms. We miss you Muffin!

Thursday, March 1, 2007 6:26 PM CST

Please keep one of Kylie's good friends in your prayers tonight. Zoey, ( www.caringbridge.com/visit/zoeybemis ), will be having unexpected brain surgery tomorrow afternoon. We are surrounding them in prayer tonight.

As for our girls, Ava's ears started draining today, despite being on antibiotics for the past 15 days. Not a great sign of things to come. Kylie napped for almost 6 hours today and we ended up waking her up, so I am suspecting something will be popping up shortly. Her last dose of antibiotics was yesterday. Potty training is going fairly well. Ky went 3x in the past few days and Ava has gone 13x~ can you believe it? Always trying to one up her big sister. We still have not seen any seizures since last monday. Her lab draw went pretty good yesterday and everything is fairly within normal limits. A few levels that are a bit low, a few a bit high but overall pretty good. She has added some new words (or close to being words) this week ~ "pot" (potty), "aura" (Laura), "wa-wa" (water), "don no" (don't know), "Baaa" (for sheep), as well as a few others. She is doing simply amazing.

Still no word from Dr Frost's office. I got Kylie's primary insurance all straightened out, just in time for her MA to get cancelled. Sigh............. The paperwork is missing in action but they better figure it out soon. I had prepayed her MA for about 5 months or so, so she better get her coverage back.

I hope everyone is staying off the roads and are all snuggled inside. More later~

Monday, February 26, 2007 1:41 PM CST

Simply fabulous is the only way I know how to describe my weekend. It was so great to get away and relax with good friends. You girls are amazing and I love each and everyone of you! =)
Kylie and Ava hung out w/ Nana and Gampa for most of the weekend and they had a great time, as always. Last week was the 2 year anniversery of Kylie's diagnosis and it is amazing to think of how far she has come. We have not seen a seizure since last tuesday, (and I am NOT tempting fate if you are listening up there!!) and Kylie seems to be doing remarkably well. She is learning new things every day and her therapists are amazed at how well she is doing and how much progress she has made the last few weeks, despite the seizures.

I talked to our insurance compnay and they started paying all of our claims on friday. Hopefully the rest will be put through this week. I have not yet heard back from Dr Frost's office and am fuming. I also was told by the insurance compnay today that there has been NO corraspondance from the dr's office re: the MSI. I don't know who is at fault here but are you friggin kidding me?! We were told the process was started on 1/17 and that it's just a slow process. It would probably go a lot faster if someone would actually turn some paperwork in. Grrrrrrrrr.

We are starting to approach the subject of potty training and have been practicing today. Except, it's not Kylie that has been going on the potty. It's Ava! The little squirt has gone 4x on the potty today! Each time she goes, she starts clapping for herself and then starts the Stevie Wonder sway. She is quite pleased w/ herself. I just put her on the potty to show Kylie and low and behold, she went. Kylie just likes to plug her nose and say, "Phew!", then watch the toilet flush. We are also taking Ava's pacifier away, so it may be a long week. Kylie is getting labs and her port flushed on wed, so hopefully everything will go smoothly. Kylie is on her last week of antibiotics, so hopefully nothing will creep up after that.
The TS walk is coming up in just 2 1/2 months, so we welcome anyone to come be a part of Kylie's team. It will take place Saturday, May 12th, in Como Park in St Paul. Lots of prizes, food, music and fun. I'll post more details as the day gets closer. Have a great week!

Tuesday, February 20, 2007 11:24 PM CST

Today we had another seizure break. Ky has been averaging 5 or so a day, so I very easily could have missed some but for the most part, Kylie had a great day. She learned that mittens need to stay on when playing w/ snow or your hands will freeze. She is learning the element of sharing, (or not), and is finally fighting back when other kids are not being so nice, (Alicia~ I'll have to tell you about the cat fight!) We are seeing a typical 2 year old and with Miss Ava knocking on the terrible 2's door, I am catching a glimpse of what having 2 teenagers is going to be like. Ky's speech is really taking off. She finally said "Grandpa" for the first time yesterday, (sorry you missed it Dad!), told the dog to get "down" from the couch and everything Ava does is "no-no". She went to Auntie's basketball game tonight, dressed in beads, her feather boa and a pink tu-tu over flowered wind pants. I'm sure she was quite the sight. I took the girls to the MN Zoo yesterday and decided we will not be going back for quite awhile. Ky's friend came w/, so I had two 2 year olds running in different directions, a 1 year old screaming for attention, while everyone and their 1st, 2nd and 3rd cousins decided to go to the zoo yesterday. I am happy to report both girls seem much healthier this week. The ears and sinus drainage looks much better all around. Ky is on antibiotics for 1 more week and Ava for 2 more weeks. Dr Frost's office finally called back yesterday and I have to say I am heated. They were supposed to get back to me last wed and when they finally did, his nurse was telling me they went over her EEG from feb 06. They think the seizures are coming from the right mid parietal/central region of the brain, most likely where the motorstrip is located. This is not where they have been telling us the seizures had been coming from. If that is the case, surgery is a no go and we are basically screwed, to say the least. When I asked what her EEG showed from 1/07, I was left w/ "Dr Frost is pondering over it." Whatever the H that means, I still am waiting to find out. He was thinking either he can't tell where the seizures are coming from or it is a really crummy EEG, meaning the signals didn't pick up very well. Now, we were in the hospital for 2 weeks, averaging around 100 seizures a day but Kylie was never hooked up to EEG. Why, you ask? Well, we were told they had "plenty" of data from the EEG in Jan. Did anyone even read the EEG at that time? I am thinking not, or they would've noticed it wasn't a good EEG. Now, they are wondering if we might come in for a 4 hour EEG and figure out a time that she would be seizing the most. Like we have time for a 4 hour EEG. I'll just fit it in between my massage and cocktail hour. A few weeks ago, she was seizing constantly. Although I am very happy that has stopped for now, I have no clue if she'll seize in that 4 hr period. I even asked before we were discharged if we could hook her up before we leave, if there were any chance we would have to come back in the next few weeks for another EEG. No dice. I could barely keep her still for the 1 hr EEG. The new clinic doesn't have tvs/vcrs and I can't imagine tring to keep her still for 4 hours. Needless to say, I'm slightly peeved. The MSI still isn't set up and my insurance company is being a royal pain in the rear. They have denied every single medical claim since 11/06, even after talking w/ 3 people and a supervisor, all who told me things would be taken care of. The only reason they are being denied is because they said I have to inform them of Kylie's secondary insurance. Apparently telling them 3x is not sufficient. I literately have a crate full of medical bills that have not been paid since November. I pay good money for my insurance and am completely furious w/ them. The icing on the cake was Dr Frost's office telling me they will almost positively need to put a grid in if they decide to go for surgery. I will not put my daughter through brain surgery to put a grid in if there is not a good chance a tubor will becoming out with it. If her seizures are coming from her motor strip, they can't do surgery in that area because she would loose that specific function, (not a good thing, considering some of her functions aren't the hottest comodity on the market). What is the point? Everything we have been told for the last year seems to be a pile of you know what. I am sick of waiting patiently, wondering what the next step will be. I think tomorrow is the day I take on the insurance company and the dr's office. I am pretty laid back and easy going about most things but I am finding that attitude is not getting me the answers I need. Even if I don't get the answer I want to hear, I need to hear something. I can't keep playing the "what-if" game. It's enough to get me locked up. On a hugely positive note, I am going out of town w/o my kids for the first time ever!! I am heading out this weekend for a resort and spa weekend w/ my 7940 girls. There are 9 of us going~ these are some of the most fabulous women I have ever met in my entire life. They are truely the light in my sometimes very dark world and I am truely blessed they have entered my life. Keep your fingers crossed the snow stays away! Ok, this is way too long winded of an update and sorry to be complaining so much. I just needed a vent! Hope you all have a fabulous week and enjoy the gorgeous weather!

Friday, February 16, 2007 12:47 AM CST

UPDATE: Sunday 4pm~ It was a short reprieve. The seizures started again yesterday. TS sucks.

Last year on Valentine's Day, Ava was 12 days old. Kylie had gone 7 weeks without a seizure, until that morning. Neil and I were watching her play, when her head went down. We looked at each other and instantly knew the battle was beginning again. A few days later, Kylie ended up in the hospital for nearly a month and at one point, had 73 seizures in one day. Then one day, they stopped. We had over 9 months of blissful seizure free days. And let me tell you, Kylie blossomed. Right before Christmas this year, we started to again question if she was having seizures. Our worst nightmare returned on Jan 16th, when rectal valium became our best friend. She ended up in the hospital again, this time for 2 weeks. We came home on Ava's 1st birthday, with seizures but determined to get back to our regular routine. Valentine's Day is a holiday most of us seizure moms dread, a day when many of our kids have started having seizures or when they have gotten way out of control. This year, St Valentine has redeamed himself. That was the first day we did not see a seizure in nearly a month. We are on day 3 of no seizures. I'm almost scared to say it out loud, but it has been so nice. Kylie has learned a few new words this week, I think amazed her therapist when she put all of the correct shapes in the shape puzzle and has been using her signs and words so much, I almost feel like we are having a conversation. Yesterday at nap it was, "No,no- nigh,nigh" (nigh-nigh is her word for nap). All of her therapists have said she has not lost any skills during this latest round of seizures and in fact, her walking is better and her speech is better- go figure. We even get to cut down her OT to 1 day a week. We saw Dr Karlen yesterday (ENT) and although her ears are still slightly draining, he though she looks great. Her sinuses are clearing up but the holes he made from the last surgery are still open. He said from a surgical standpoint, she looks 100etter this spring than last and doesn't think we would have too much trouble w/ infections for brain surgery, (hoping we really won't need it!) As for Ava, we are disappointed. Her hearing frequency (?) is still a flat line. He actually had to suck the gunk out of her ears and said her tubes are most likely plugged. He also is suspecting she may have the same sinus stuff as Kylie. If that's the case, we can't relate any of Kylie's immune stuff to her TS or to her seizure meds. I am suspecting Ava may also have the same CF variation as me and Ky, (we are carriers but do not actually have CF). That specific variation is related to sinus infections. So, time will tell. Ava has to be on antibiotics for 3 weeks, then go back for a recheck. If she is still draining next week, he'll culture her then. Best case scenario the antibiotics will work and her hearing we finally be normal. If not and the tubes still look plugged, she will get a new set. No word from Dr Frost's office, (of course), so I'll wait until tuesday and call them. We have been staying busy here. Auntie Kari babysat on wed, as Neil and I were supposed to go out. He got off work too late, so I went to bed by 730 pm. I have to say that was the best darn Valentine's Day I've had in awhile. Last night, my mom and I took the girls to the mall, so Kylie could practice walking. She is practically running! Except, she runs into people, plants, garbage cans~ depth perception is not her strong point. She has to stop and check out all the shops, look at the pretty dresses, the letters on the windows, the large ad of dead beetles, (which she thinks are fish and makes her fish face at them). The girls both have ECFE in the morning and Kylie has a date w/ her daddy tomorrow. They are going to a birthday party and a hockey game. Tonight she is going to Auntie Kari's basketball game w/ Grandma. That's all for now. Please continue to keep Kylie's good friend Caroline in your prayers. She is still in ICU in Fargo. And as always, keep prayin those seizures stay away!! Have a great weekend!

Tuesday, February 13, 2007 9:43 AM CST

I heard back from Dr Frost's office and here is the game plan. They did not realize we have not had the MSI done yet, (insurance is not approving it), so they will be pushing the issue today. Dr Frost and his nurse are supposed to sit down after clinic today and look at all of her previous EEGs, to make sure they match up w/ her PET scans. The morning of the MSI Kylie will come off all of her meds, which will hopefully give them more data to work with, since her EEGs are usually pretty quiet. Even if they don't get enough data, they will still present her to surgical conference. At surgical conference, a team of doctors will discuss the risks vs the benefits of surgery. There is always a chance they may think surgery is not the best option and we will have to come up w/ plan B. She will almost surely have the grid put in, in which they place a mesh like device directly on her brain, which will give them better data of where the seizures are coming from. It is an "internal EEG", vs the external ones she usually gets. If all the data shows her seizures are coming from a specific tubor or surrounding area, that area will be removed. Our huge concern right now if the numerous infections Kylie always seems to have. She can absolutely not have had an infection for 2 weeks prior to surgery, nor have been on antibiotics. They will get her team of drs together before hand (neuro, neurosurgery, ped, ID, heme, ENT) and discuss how to prevent the infections before hand, as well as after. Since she also has a disease where her blood does not clot properly, she will have to get blood products prior to surgery. There are so many variables to work out, not to mention our utmost fear of putting our baby through brain surgery. The what if's and unknowns are enough to drive anyone insane. I think my biggest fear right now is them telling us surgery will not work for her and then trying to go from there. What happens when you run out of options? Of course, I also can't imagine sitting in the waiting room for hours on end, knowing the doctors are greatly altering our lives and praying that the outcome is the one we have been praying for.

Saturday, February 10, 2007 11:50 PM CST

**UPDATE Mon 8am~ We stayed in all weekend. Both girls have been sick and Kylie was running a 102 temp yesterday, as well as both ears draining. We stated her on an antibiotic yesterday, as well as ear drops. We are not off to a good seizure day. She has been up for 45 minutes and has had 4, as well as 3 we woke up for during the night. I need to try and get ahold of Dr Frost's office this morning. Kylie managed to open a bottle of nail polish last night and dumped half of it all over the microfiber rocker. No idea how to get it out but I told her that she was lucky her parents have been through so much stress w/ her. Makes a ruined chair seem like small potatoes.

***Anyone know how to get nailpolish off microfiber? Let me know if you do!

Good evening. Things are slowly returning to normal around here. I finally finished unpacking our hospital bags and am in knee deep in dirty laundry. Both girls are sick right now and Ava has been horrid~ whiny, crying, having full out temper tantrums every time I am more than 5 feet away from her. I have a bad feeling what she is going to be like as a 2 year old. I do so love my girls but I tell you~ they are night and day. We ended up bringing both girls into see the ped this morning. Kylie offically has another sinus infection and has been purely miserable. She also has a double eye infection, but has been on drops for quite a few days for that. She looked like death today, as well as a huge walking germ. I am buying stock in lyesol. Her seizures continue, with a good day being 4 or so and a bad one being around 10. They are shorter and some are less intense, but she still continues to battle. Her and Ava were snuggled together on our bed, watching Seseme Street today and Kylie went into a seizure. Ava rested her hand on Kylie's cheek and I thought, how sad it is for these dang seizures to interrupt moments of their childhood. Although I am glad we are down to a reasonable amount, I am longing for the days or normalacy, (and for the days where I am not sleeping on the edge of the bed, since Kylie likes to sprawl out). Ava's ears are looking better, even though they still drain a bit and she has been acting like a holy terror. Her nose is full and she most likely has a sinus infection brewing but we'll wait until next week and see what happens. The girls see the ENT next week, not this past, like I thought. I need to get my palm pilot back in action. A few days ago I found Kylie walking backwards down the basement steps. My clumsy, uncoordinated daughter figured out how to unlock the baby gate and was on the second step, holing onto the gate, going down. Why she didn't fall and break her neck, I'll never know. I have a feeling a certain baby angel was there holding on to her, until I found her. Yesterday, I found her chewing on a push pin and about peed my pants. Not sure if anyone caught the episode of "House" this week, where the kid swallowed the tooth pick, but I was invisioning a push pin poking holes all through her body. Luckily, I got it out of her mouth and found the missing pin on the floor. She is the poster child for the kid who drinks draino. The girls were both supposed to start ECFE again today but we had to cancel. Hopefully they will both feel better next week. Auntie Kari is coming over to hang out in the morning, so I get get some laundry done. We have a birthday party in the afternoon, which I am hoping everyone will feel up to going to. I am eagerly anticipating my first weekend away since becoming a mommy. I am heading to a resort in a few weeks w/ my 7940 moms, for a weekend of pampering and relaxation. The girls will spend the weekend w/ Grandma, since Neil works. We leave in a few weeks and I am counting down the days. Please continue to keep Caroline in your prayers, as she is still in the PICU on a vent in ND. Also, for the Olson and Roth families, as they continue to miss their babies. Thanks for checking in w/ us! Much Love ~ Maria, Neil, Kylie and Ava

Wednesday, February 7, 2007 9:30 PM CST

Good evening. Kylie is doing much better w/ her seizures. We only saw 3 today, which is a huge improvement. Unfortunately, she now has an eye infection and I'm pretty sure she is developing another sinus infection. Junky nose, puffy face and the sinus breath. She also napped for 4 hours this afternoon and I finally had to wake her up at 630pm. At about 845pm, she climbed up into my lab and fell asleep instantly. Poor kid never seems to catch a break. Getting her eye drops in her has been quite the challenge. I feel like I am wrangling a bull! Ava has been horribly crabby on top of things, most likely from her ear infection and her teeth that are coming in. Ava goes in tomorrow for her post-op check-up, so I'll see what he thinks about Kylie. This would be her 2nd sinus infection since our last appointment, which is the point he would do sinus surgery again. However, her CT a few weeks ago looked pretty good, so maybe we could just get away w/ oral meds again. Kylie had a busy night last night and even broke curfew. Uncle Ben and Laura took her to her ECFE toddler gym class, to Auntie Kari's basketball game and then out to dinner. Tomorrow evening, she has a date w/ grandma, while I try and get our taxes figured out. Ava starts ECFE this weekend and Neil and Kylie will resume their art class. We are bsuy w/ parties and get togethers as well~ never a dull moment in this house! Thank you all for your continued prayers for Kylie and for continuing to check in w/ us!

Monday, February 5, 2007 3:35 PM CST

After a day full of seizures yesterday, things have seemed to calm down today. Maybe it's because I accidently gave her too much felbatol this morning? For some reason I thought I was drawing up her antibiotic and gave her that dose instead. Opps. At least I didn't give it to Ava. She has had 5 or 6 seizures that I have seen today, although I can't watch her every single second, so I probably missed some. Our new problem is she is waking up at 430am and is ready to go for the day. It could be from the med changes or from the change in routine. Who knows. If she is still doing it after a week, I'll see what the dr thinks. Ava has her first ear infection after 2 weeks of having tubes. So far, I'm not real impressed. Please continue to keep Caroline in your prayers (www.caringbridge.com/visit/carolineruby). It was heartbreaking to see her hooked up to so many tubes and IV pumps and to see the heartache of her family. I know we could be where they are in an instant and can not imagine anything more agonizing than watching your child fight so hard to live. As always, keep the prayers coming for Miss Kylie. We are trying to get back in a routine, yet struggling to do so as we sit and wait for the next seizure.

Sunday, February 4, 2007 0:01 AM CST

UPDATE 1045 am: I'll be heading home shortly. Kylie had already had 14 seizures by 9am, 8 of them in her sleep. Please keep the prayers coming.

Our sweet friend Caroline is in desperate need of your prayers. Shannon and I are in the PICU in ND visiting her right now, as she battles for her life. We are asking God to watch over her and to give her family some much needed strength. www.caringbridge.com/visit/carolineruby

As for Kylie, the seizures continue, although there were fewer and they were shorter and less intense today, which is progress. She doesn't quite seem like herself to me, which could be from all the meds or maybe from the constant seizing she has been doing the past few weeks. It was so good to sleep in our own beds last night and I didn't wake up until 1030 this morning. We took the girls to MOA last night for Ava's b-day, had pictures taken and had dinner at Rainforest Cafe. The girls love that restraunt. I haven't been in a real celebratory mood and really had to put some effort into Ava's big day. Hopefully we can get back to some normalacy this week. Kylie was approved for a few more PCA hours, so that will help some. I'll update more later. We are going to sneak back in to sit w/ Caroline.

Sunday, February 4, 2007 0:01 AM CST

Our sweet friend Caroline is in desperate need of your prayers. Shannon and I are in the PICU in ND visiting her right now, as she battles for her life. We are asking God to watch over her and to give her family some much needed strength. www.caringbridge.com/visit/carolineruby

As for Kylie, the seizures continue, although there were fewer and they were shorter and less intense today, which is progress. She doesn't quite seem like herself to me, which could be from all the meds or maybe from the constant seizing she has been doing the past few weeks. It was so good to sleep in our own beds last night and I didn't wake up until 1030 this morning. We took the girls to MOA last night for Ava's b-day, had pictures taken and had dinner at Rainforest Cafe. The girls love that restraunt. I haven't been in a real celebratory mood and really had to put some effort into Ava's big day. Hopefully we can get back to some normalacy this week. Kylie was approved for a few more PCA hours, so that will help some. I'll update more later. We are going to sneak back in to sit w/ Caroline.

Friday, February 2, 2007 9:53 AM CST

HAPPY BIRTHDAY AVA GRACE!!! You have been the best suprise we have ever been given and we are so blessed to have you in our lives. We love you so much!!!
We are breaking out of this place today!! Kylie only had 11 seizures yesterday, (better than the close to 100 a day she was having), but has had 7 so far this morning. I am still comfortable taking her home and the dr said if things start picking up again, he'll just re-admit her. I talked him out of doing another EEG next week, so he said we can just follow up w/ Dr Frost in a few weeks. He is going to give us a med schedule for the next week where we will continue to increase the zonegran, then the felbatol, then slowly come off the transene. We are getting the girls' pictures taken today at 4pm, then going to dinner at MOA. I am completely and totally exhausted and can not wait to sleep in my own bed tonight. Please keep our good friend Caroline in your prayers today. She in the PICU in ND. We love you Caroline!! Our next update should be from home!

Thursday, February 1, 2007 1:28 PM CST

Kylie has been having a much better day. She has only had 5-6 seizures so far today. The ones she has had have been hard and was slightly post-ictal after the last few, (for less than a minute), which isn't great news but the fact that she has had so many fewer is awesome. If she continues to do well, we are going home in the morning!!!! If these harder seizures continue over the weekend, we will get in to the clinic next week for an out patient EEG. She is going to stay on the extra morning dose of transene for the time being and as things (hopefully) settle down, she will slowly wean off of it. We are having an awful time getting the PCA hours set up. The public health nurse flipped out on our social worker and the charge nurse here and is telling them Kylie was never approved in the first place. Our regular public health nurse is gone umtil next week, so hopefully everything will get straightened out by then. I have all the documentation from her inital assessment at home, so I will be getting to the bottom of this soon. I talked w/ Dr Frost's nurse today and we are proceeding w/ surgery. If the MSI gives us the information we are looking for and it all is positive, we will all sit down and figure out if this course is the best one for Kylie. Ultimately, we want her seizure free again using as few meds as possible. If it takes surgery to give her a chance at a normal life, that is the road we plan to take. After spending the past 2 weeks here, I think maybe her seizures started up again to remind us to not dwell on the things Kylie can't quite do yet but to be thankful for the things she can. God gave us an amazing little girl, who is so full of life. She charms everyone she meets, is a little social butterfly and just truely loves life. We are so lucky to have an amazing family and friends, as well as all our faithful followers. So many kids up here will never have that type of ove and support in their lives and some of these kids will never have the chance to achieve the things in life that Kylie has and will achieve. We are blessed. I have also met some amazing families up here, who truely cherish their kids. Seeing love like that is almost overwhelming. We have an adorable new friend named Reese and his mommy Nina, who has been an awesome support to be the past week. We just wished they lived closer to us. Him and Ava are a week apart and he is here to start the Keto diet. Please keep him in your prayers that this diet will be the miracle he needs to become seizure free. To all my work girlies~ thank you for the frequent visits and treats. This is why I don't mind the craziness we deal w/ every day on our floor~ you guys all make it worth it! I am SO looking forward to the end of the month, when I am going out of town w/ my 7940 moms. It will be my first weekend away from my kiddos and I can't wait, especially after our recent craziness. Ok, this was just going to be a short update, so I should go. I can't even tell you what a crazy girl Kylie has become the last few days. Coming off the depekne has given us a "typical" 2 year old~ Naughty, crazy and wild! I love it!! More later.............

Wednesday, January 31, 2007 4:55 PM CST

Hi all. Kylie is a live wire today. She started having seizures last night around midnight, then was awake from 12-230. She was going strong and did not want to sleep. She had 9 seizures during the night, then had a slew of them this morning. The dr decided to give her a late morning dose of transene and as of 5pm, she hasn't had a seizure since 11am. (!) She is getting 150mg of zonegran now, which is 25mg more than she was at before the wean. Dr Frost was concerned about this and wants us to watch her closely to see if she has any cognitive difficulty from the increase. I do have to say she has been super bright, bubbly and chatty today. Maybe even a little ADHD. =) Jumping on the bed, squeezing my cheeks, singing and dancing. It's been awesome to see. She never napped today and then we had our date w/ Elmo. She was in a total state of shock the entire time he was here- her eyes were huge, she was shaking and she kept saying "Ehm-ma! Ehm-ma!" She clung to me pretty much the entire time but then was super giddy and showing me Elmo's picture as soon as he left. Go figure. She got a little gift package and had a few of her little friends here to join in the fun. The kids were pretty cute. As for Kylie's plan, here's where we are at~ she got an extra dose of transene late morning and will continue to do so until her seizures slow down or stop. It will hopefully tide her over until her other med levels get higher. Her felbatol level is still low, even with all the increases and they are unsure why. Her zonegran dose can be increased a little more, unless we start to see cognitive impairment. He does not want to start her back on the depekene if we can help it. There is a new drug called clozapam that is in clinical trials and will be open to new patients again in May. It is very similar to transene and he thinks it will work well for her. So, if we are still battling the seizures then, they will try to get her in the trial. He was also going to find out about another clinical trial using a new med called rapamyocin (sp), which is being used in TS kids to shrink SEGAS. Kylie does not have a SEGA but they are testing it against seizures as well. I think that one is a long shot, but we will see. As for surgery, they are going to try and maximize the meds first. They said the reason being is that they don't typically see kids have as many seizure as Kylie that are so intense and have the kid still be so high functioning. He said we definately don't want to keep having this many seizures but they are worried that surgery could impair how well she is doing cognitively/mentally. Even though her vocab isn't the best, she communicates really well and is actually pretty smart, (or so we have been told while we have been here). My insurance is being horrible about the MSI she needs done. In the past year, they have decided to not approve the test. So, we have to summit the request to them, they will deny it, the Dr Frost will have to write a letter to them thelling them why she needs it. Then, if they still decline it, we have to summit a letter to MA, stating that we tried to get it approved from the primary insurance company but it was declined. Then, MA would pay for it. I offically hate insurance companies today. What a pain in the rear. Kylie's eye looks a little questionable today. It is red and slightly weepy. If it looks worse tomorrow, we will be an antibiotics and quarantiened to our room. =( We had a roommate over the weekend who had a big eye infection, so she may have picked a bug up from him. So, we will at least be here for a few more days to monitor things and make sure things keep getting better. If they continue to improve, Dr Doscher will clean up her med schedule (which is a small disaster), hopefully hear back on the MSI, then follow-up w/ Dr Frost. If things get worse, we will be here until things get better. Keep your fingers crossed. I'm off to deal w/ my wild and crazy 2 year old........................

Tuesday, January 30, 2007 8:12 PM CST

After a horrible morning, Kylie's evening is going slightly better. Huge thanks to my 7940 girlies for my awesome massage tonight and to Shannon and Cam for sitting w/ Ky so I could go. Kylie's surgery went goo today. Her port was twisted at a 180' angle and her cath was all twisted. The surgeon made a deeper pocket under her chest wall and secured it tightly. If it happens again, she will need a completely new port. The med plan has changed again. We are going up on the zonegran and possibly the felbatol and transene. If we still are seeing things go in the wrong direction, we will go back on the depekene. I feel like we are spinning in circles. Some of her seizures were pretty hard today and she fell a few times, one time smacking her face on a peg board. Ouchh! Dr Doscher also said we don't need to wait for her to meet her load order. If I feel things are going in the wrong direction, I can have him paged and we can load her. Tomorrow is our big date with Elmo. Keep your fingers crossed she doesn't freak out! More later................

Monday, January 29, 2007 9:14 PM CST

Good evening. Kylie has been keeping us busy today having seizures. She never met her load criteria but is still having too many. The plan is to try and get us out of here by the end of the week, as long as we keep seeing fewer seizures each day. That was the trend we saw over the weekend but I think she had more today than yesterday. Today Dr Doscher, (the ped neuro covering for the next 2 weeks), took Kylie off her depekene cold turkey. I'm only SLIGHTLY freaking out, since the last med wean didn't turn out so hot. He also wants to take her off her transene, which she has been on for almost a year and has been mostly controlling the night time seizures. I would rather do one at a time but he thinks the valium we use in emergencies isn't working because she has built up a tolerance and the transene is making things worse. I can not have this kid seizing all night, so we will see what happens. Ky is scheduled for surgery tomorrow afternoon to get her port fixed. They were thinking they were going to give her some clotting products prior because of her von Willebrans but they think she will be ok w/o it. She got a new pink helmet today, since her old one is too small. Have I told you all how much I hate the helmet? So, we most likely will be home for Ava's birthday. However, with much heartache, we will be bringing home a seizing girl. Her seizures have not seemed to have gotten a whole lot better since we have been here and the intensity seems so much stronger. The comfy life we settled into will be a thing of the past and unless surgery will stop the seizures, we are going to have to learn to live with them. Someone will need to be watching her 24/7. I hate seeing her like this, especially since she has done so good for so long. I truely thought we all had a shot at a "normal" life. So tonight, please continue to pray that Kylie's seizures will go away~ if they don't, please pray my heart will stop breaking.

Sunday, January 28, 2007 5:15 PM CST

Kylie is having a slightly better day. She didn't have a seizure until she was awake for about an hour, which is an improvement and is going in spurts. She was seizing every 10 minutes before her nap, so not sure if the change in her med schedule is helping or not. The dr did think she seems wobbly today, (more so than her baseline), so she said they will still recheck her drug levels in the morning to see if that is a factor. She is going to see a surgeon tomorrow too to look at her port. They will most likely have to go in and fix it but hopefully it won't be too big of a deal, although she will have to be sedated again. Huge thanks to Shannon for getting me out of the hospital today and to all my 7940 girls for the nice suprise. Love you girls! Also, to Grandma Sue~ Kylie was so happy to see you! She has been missing your love! To Noan, Nicole and Jay~ thanks for the treats and visit and to Nikki~ I love our daily visits. =) To my fam~ love you guys. Things have quieted down around here but sounds like it will get busy again tomorrow. We are so looking forward to Elmo this week. More later...............

Saturday, January 27, 2007 5:50 PM CST

Kylie got a break from the seizures for a few hours this morning. She seems to get these breaks for a few hours after her morning meds and a few hours after her bedtime ones. The dr wanted to try and switch things up, so they are going to spread her meds out through the day. They are also increasing her morning dose of zonegran. They changed her dilantin load to oral instead of IV but it is only to be used in the evening, since it makes her sleepy. If she needs to be loaded during the day, she will get valium. We aren't really seeing the valium work, so we may just try to get through the day w/ a nap. Her sinus CT had "marked improvement" from the one she had done a few weeks ago, so it doesn't look like that is the cause of her seizures. Her port a cath seems to have flipped over in her chest wall, so when they need to use it again, they will have to manually flip it back. She will have labs drawn monday morning to check her drug levels and see if they are getting closer to what they need to be. Kylie has decided she is done w/ hospital food and we can't get her to eat any of it. However, a few days back she had chips w/ the nurses so she would get thristy and drink something and now she is addicted. =) We are going to have to start bringing outside food in for her. We had a nice suprise today~ some people from McKenna and Drew's church came to pray over Kylie. It was a very nice visit and much appreciated! It's a full house on 7940 and was wild and crazy last night. Big thanks to my mom for watching Kylie last night so I could work and Neil could go to the Wild game. Also to Uncle Andy and Auntie Andrea for having their first sleepover w/ Ava. Ava is finally (sort of) crawling. She uses the side of her head and shoulder and pushes off w/ her knee to "slither" across the floor. Not pretty or graceful by any means but at least she is doing something other than rolling all over. She has her 4 bottom teeth in and all 4 top ones are just about in. She really wants to walk, so hoping her balance is a little better after getting her tubes in. I can't believe my baby is going to be 1 in a few days! I need to dash back to the hospital to relieve my mom. I came home for a bath and MUCH needed nap. I am totally exhausted and it's starting to catch up w/ me. More later.........

Friday, January 26, 2007 10:14 AM CST

UPDATE Sat 2:20 am~ It's hard to know which day sucks worse than the next. We thought thursday was a pretty decent day but friday was awful. My mom told me she had 40 seizures alone on the evening shift. She got an IV load of dilantin, which finally knocked her out for the night. They had some difficulty getting her port de-accessed after the CT, as it somehow got bent during the CT. They are going to try and get her in for an xray tomorrow to make sure it looks ok. Dr Frost is off now for a long stretch, so it could get interesting. I'm not a huge fan of the dr on-call this weekend, so we will see what happens. The new ped neuro is on next week, so hoping he can get things figured out. I am so frustrated and so sad watching Kylie battle these damn seizures. I miss Ava, so I am going to try and get some cuddle time w/ her tomorrow. Hoping the morning brings a better day.

Good morning. I think we are going to be here for the long haul. Kylie's drug levels came back this morning and her felbatol level is low, so Dr Frost is going to increase her evening dose. Since he is doing that, he is going to take the "opportunity" to take her off her depekene, which she has been on the longest. This will be in preparation of surgery, as well as hoping it will help her zonegran levels stay more stable overnight. Of course, coming off a med has me slightly freaked out, since our last wean didn't go so hot. Kylie slept good last night but had a few seizures in her sleep early this morning, then started up w/ her regular amount this morning. Disappointing to say the least. I truely thought we were on the road out of here. We have one week from today to be home for Ava's birthday, so cross your fingers! They started some IV fluids on Ky this morning, since she can't eat or drink today and she has not been drinking enough as it is. After some slight issues w/ her port, she got hooked up and now we have the task of keeping a very active 2 year old in bed most of the day. We are getting maxed out on Elmo DVDs and have seen "Potty Time Elmo" 4 times since this morning. Maybe things will sink in by the time we get home. Kylie wants to wish her Great-grandpa a very happy, although belated, birthday! We love you!! Alright prayer warriors~ let's kick things in high gear. We want to bust out of here but someone needs to relay the message to Kylie. She thinks we are at sleep-away camp. Child Life gave tickets to Neil to go to the Wild game tonight. I, however, will be working while he has fun, so "NaNa" will be hanging w/ Ky. It's so convinent I only have to jump on the elevator and go 3 floors down and I am at work. Ah, the luxeries of hospital life. I'll update later after her CT........

Thursday, January 25, 2007 10:23 AM CST

UPDATE 1030pm: Kylie had a much better day today. After starting the day w/ a bunch of seizures, they slowed way down and she went from 130pm-630pm w/o one. So, we are hopeful things are looking up. Her CT will actually be tomorrow at 3pm. The girls had fun today wearing their pretty boas. We had a nice visit w/ Kylie's friend Mary and we met another CB mom today as well. Thanks for the princess stuff Tayna! Kylie loves it! The Elmo visit is set up for wed afternoon. Hopefully we will be gone by then and just coming back for a visit! Thanks for checking in w/ us and for all the prayers. Kylie is being well taken care of here and is keeping everyone entertained, despite the seizures. Keep your fingers crossed things continue to improve!

Good morning. Kylie slept pretty good last night and I didn't notice any seizures in her sleep. I was also dreaming I was at a high school prom and I was a pretty good dancer, so who knows if I missed any. =) After getting loaded for the second time last night, Ky had a few more seizures, then was out for the night. We had to wake her up this morning for her labs and then the seizures began. They tappered off a bit after she got her meds. Dr Frost decided to get her ENT involved to make sure her sinuses aren't causing any problems. He ordered a CT scan for later this afternoon, to make sure her last infection cleared up. They will have to sedate her for it, so maybe that will help the seizures. They're not sure why the seizures are not slowing down, so I think questioning the sinuses is a shot in the dark. But, she can't have an infection prior to surgery, so at least this will give us a baseline. That's where we are at this morning. More later.........

Wednesday, January 24, 2007 11:18 AM CST

UPDATE 820pm: Kylie continues to struggle with the seizure monster. She got a big load of dilantin before her nap. She slept for 4 hours but seized through her nap. We woke her up around 645pm and the seizures picked up, about every 3 minutes. Dr Frost decided to load her again, this time w/ valium and she got all her bedtime meds early. She is super "drunk", is having a hard time walking, yet started saying "Andy" tonight. Go figure. Please cross your fingers this last load works. We are quickly running out of options and I do not like where we are headed. The nurses are supposed to call Dr Frost back in a bit and we'll go from there. More later................
****If anyone is interested in Seseme Street Live tickets, we have 3 we will not be using. Email me at riau2@aol.com if interested.
ARGGGGGGGGGGGGGGGGGGHHHHHHHHHHHHHHH! I just added a long journal and the computer crashed, so here I go again. Yesterday was a horrible day. Kylie seized every 7 minutes between 4-8pm, each lasting between 1-1 1/2 minutes. I hate watching her go through this but it doesn't seem to phase her a bit. He was going to take her off the lyrica but because she did so bad w/ a lower dose, he is increasing it today. We are also holding off on the neurontin and increasing the zonegran. Before she goes down for her nap today, Dr Frost is going to give her a big load of dilantin to try and stop the seizure cycle. There are a few other meds we haven't tried yet but then we will have been on them all. He talked w/ the MSI people and we are just waiting on Medica to give the ok. Dr Frost also said he hates breaking promises but he is going to have to break our date w/ Elmo. He said the zonegran should've kicked in by now and he is disappointed to see the night time seizures, as the zonegran should be interacting w/ the lyrica and holding her through the night. Yet, after an hour break last night before bed, she slept for about 2 hours, then the seizures kicked in and she had many during the night. Neil stayed w/ her last night and he said he did not get much sleep. So, I guess we are here for the long haul, at least until we can get things under better control. Right now, it doesn't seem too likely. We are watching a little Elmopalooza right now but she just had another seizure and started crying after it. Real quick~ our very exciting news~ Elmo is coming to 7940! A huge thanks to my friend Angela for arranging this awesome suprise for our sweet girl. He will be coming next week and if we are home by then, we will be coming back for a visit. We are so excited and I was nearly in tears after reading the letter Ang wrote to Elmo's crew. Thank you so, so much! More later..........

Tuesday, January 23, 2007 10:42 AM CST

We are getting no where w/ these seizures. They are getting longer and more intense each day. So, today there was no talk of going home. We are adding neurontin to our drug cocktail. I have a feeling we tried it last time she was here and it made things worse, but they are going to check and if so, try a different one. There are 3 seizure meds she has not been on yet. Dr Frost does not know why her seizures are getting worse instead of better. He thought from her PET scan in April that the tubor we would be going after is the left frontal, not the right like I thought. He said left frontal, left parietal and right temporal were the active tubors but the nasty one was in the frontal. If we take that out and maybe the left parietal, the meds could control the other seizures. Or not. Who knows. There are no promises w/ the brain. The only step we need to do is the MSI and I am going to watch a DVD about it today. It sounds pretty interesting, so I'll update later about it. Dr Frost did say that even the worst, or most active, EEG that she had showed that her brain activity is pretty normal in between seizures. She also has just a slow build-up to the seizure and the EEG does not show a lot of spikes. This is pretty good news and is most likely the reason she is still able to learn even though she has so many seizures. Right now, she is averaging 10 seizures per hour, sometimes more, sometimes less. She has had spurts of a few hours of a break but then picks right up where she left off. She woke up again last night having seizures and it took forever to get her back to sleep. We woke her up early to give her meds early, so then she was wide awake. The plan back-fired, as she has been seizing her butt off this morning. I don't think we will make it to Elmo. Too bad we can't bring him to us. Ava's b-day is next friday, so I really want to be home and be able to celebrate. So, cross your fingers these seizures will slow down. I am going nuts trying to keep Kylie entertained all day. She is constantly go, go, go, which I love to see but we are in a restricted area for lots of playing. Luckily, ebay is keeping us semi-entertained. Kylie was approved for PCA hours a few months ago, which averages about an hour a day. If we go home having this many seizures, someone is going to have to be w/ her 24/7, so they are going to work on getting her approved for more. The PCA gets paid through mer medical assistance, which we have to pay for, so I guess it works out in the end. She is on my insurance through work, which basically pays for everything else. I don't ever see all the bills and I cringe to think of what they add up to. So, that's where we are at today. We celebrated Uncle Andy's b-day here last night. I want thank my family for being here everyday w/ us. Even though we probably drive everyone crazy w/ our roudiness =), it wouldn't be the same w/o you guys. More later......................

Monday, January 22, 2007 2:10 PM CST

The seizures are relentless. Instead of slowing down, they seem to be getting more intense and lasting longer. They are starting to cluster as well. She was doing great this morning and didn't have a seizure until after 10 am. We were talking about going home later this afternoon or tomorrow. Now, I don't know what the plan is. Right now I could give a rip about Elmo. I just want the seizures to stop. She recovers good in between seizures and is still her smilely self. I asked what her other meds are really doing, since she is seizing w/ them and he said not much. He could take her off of different ones and switch things around, but we would have to plan on being here for awhile, which we really don't want to do. I just want these stopped and I don't want her to loose function. One of her home therapists came to visit and said cognitively Kylie seems the same to her, which I love to hear. Neil stayed w/ Kylie last night and she threw up all over him. Glad I missed that one. She did have one seizure in her sleep, so I guess we are going back down the road of no sleep. Her seizures are all looking like her old ones now today as well. Please continue to keep her in your prayers and to our little angels friends~ stay close to our girl!

Sunday, January 21, 2007 12:59 PM CST

UPDATE 8pm: The seizures have continued to be relentless. She ended up getting loaded again around 430pm with 50mg more of Dilantin than she got yesterday. Still, the seizures continued, so she got her evening meds early and fell asleep around 7pm. I ended up getting the evening off, so I'm going to take Ava home for some snuggle time tonight. She has been so good through all of this. As I watched her sit w/ a little friend we have made on 7940, I thought about what a compassionate person Ava is going to grow up to be. So many kids she has been exposed to in her short life have so many different disabilities and she is fascinated w/ these wonderful children. She is growing up and learning that every child is special, no mantter their abilities. Please say a few prayers tomorrow is a better one for Miss Kylie.

Kylie had a rough day yesterday. I don't want to know how many seizures she had. She was loaded w/ valium and continued to seize through it, so they loaded her w/ dilantin. She slept for 2 hours, then woke up and started seizing again. She went to bed, then woke up around 1130pm, started seizing again, then fell asleep for the night at 1230am. She slept until 830 this morning and we had to wake her up to get her meds in. Not 5 minutes after waking up, she started up again and had 15 seizures in an hour. She then did great all morning but just started up again. She is super tired, so I think she'll nap for awhile. Her zonegran is being increased again tonight, so hopefully that will help. She is going to start all her therapies again tomorrow. I have to work this evening, then I'm going to take Ava home tonight. So, I'll update more later.

Saturday, January 20, 2007 9:28 AM CST

Update 4 pm: Our day started going downhill after Kylie's nap. She woke up around 130pm, met her 10 seizure in a half hour load criteria, got loaded and has proceeded to seize right through the load. So, she is getting another load but they are using oral dilantin instead. Going home tomorrow isn't looking too promising. (Am I having dejavu'?) We thought she was looking pretty good this morning and were going to try and bust out tomorrow. If she doesn't make a drastic improvement, I doubt that will happen. Have I said today how much TS sucks? Cause it really does.

Good morning and HAPPY BIRTHDAY UNCLE ANDY! Ky woke up at 5am and sat with the nurses for 2 hours so I could get some more sleep. She did great those 2 hours- no seizures, super chatty and back to her old self. I thought we would be out of here today, then at 730 they started up again. She also has a rash all over her body and a temp. Not too high but still there. She is a super rashy kid anyways, so hopefully nothing new will pop up. Thank you so much to Shannon and Jody for visiting last night. Love ya ladies! Dr Frost just got here, so I'll update later.

Friday, January 19, 2007 1:00 PM CST

UPDATE: We are in room 7948-1 and the # is 651-241-7921. We are going back on the zonegran, at least until everything for surgery is set up. We are loading her for 10 seizures in an hour, going off the diamox again, after a load of it this morning. We are also going back down on the lyrica. She doesn't have to get hooked up to EEG yet, since she had one on wed. Dr Frost said her seizures are not generalizing at this time, which is great news. Also, in between seizures, her EEG looks normal. He also promises us we will be home in time for our date with Elmo next thursday. Miss Ava got her tubes this morning and as they were putting the gas mask on her face, she was clapping and singing. The nurses said they have never seen a baby be that good about being put out. Poor girl- no coddling after surgery. She got shipped off to Grandma's. More later........

Kylie is being admitted to 7940. We are going to leave in a bit, so keep your fingers crossed. So much for scrappin tonight Jode. I'll update later.

Wednesday, January 17, 2007 6:27 PM CST

UPDATE #2 thurs 630pm: We finally loaded Kylie at 5pm tonight. I talked w/ Dr Frost's office at 345 between then and 5, she had 15-16 seizures. So, we loaded her and at 615pm, they started back up. If she keeps going, I'll call Dr Frost again and see what the next step is. He increased her lyrica by 25mg tonight and they are trying to get all the insurance approved for the MSI. Kylie is miserable and kept saying, "Ow! Ow!" I am so thankful at times like these that Ava is in our lives. As Kylie seizes, Ava wiggles all over the floor, her form of dancing but it looks like she is doing the "worm". More later......

thurs 1245pm: Please keep baby Avery in your prayers. We met her mom in Chicago this summer and Avery is a month older than Ava. She has TS and had the tuber resection on tuesday, (which is what Ky will have). Now, she is battling fevers and they have found she has an infection in her brain, which has spread to her blood. They are in desperate need of prayers. Her website is www.carepages.com and her sign-in is LittleMissAveryUpdates. She is a huge sweetie and we are praying hard for her. As for Kylie, we ended up loading her last night and then she seemed great. She fell asleep, woke up at 315am, then back to sleep until I woke her at 830am. After about an hour being up, the seizures have kicked in again and we were at 11 by 12pm. Those are the one I saw and they can be really hard to catch, so who knows how many she is really having. We are waiting to hear back from Dr Frost's office and do not yet have a date set for the MSI. I still can't believe we are going through this again. This is so unfair for her. Just when we thought TS was on the back burner, it came out and bit us in the rear.

The seizure monster has decided to come out of hibernation and Miss Kylie has been seizing her socks off. She had her last dose of zonegran on sunday night and we don't know if it was from that, possibly from adding the diamox, a combo of both or just plain bad luck. We had to load her last night for the first time since March and it nearly broke my heart to do so. She had been doing a lot of staring yesterday and put her head down a few times. 2 of her therapists thought she had a seziure during each therapy but I was still questioning, or better yet, hoping we were wrong. I ended up calling Dr Frost last night, who just happened to be on call, and he had us load her and see how she did. After the load, she fell asleep. I had forgotten how much I hate seeing her like that~ her body completely limp, her eyes rolled back into her head, her tongue sticking out of her mouth ever so much and her breathing so shallow, I had to question a few times if she was breathing. She woke up around 130 am and we had to give her some melatonin to get her back to sleep. She woke up early this morning and was not quite herself. She was pretty much a noodle, which is not uncommon after getting diastat, but even had a hard time holding her head up. I thought she had 2 seizures this morning, before we left for the dr. Ava had her pre-op physical this morning, (could her timing be any better?) and I just happened to bring Ky in to get her BP checked. The ped was very concerned w/ her "drunken sailor" walk and the fact that her depth perception seems to have disappeared, (she has taken quite a few headers, trying to walk to certain things). Plus, she seemed to have just "checked out". So, she called Dr Frost and he actually got us in at 2pm for an EEG. She fell asleep about 45 minutes before our appointment and slept through the entire hook-up, (which is not a nice process). We actually had a hard time waking her up. Soooooooo, I was expecting a seizure or 2 but Miss Kylie decided to suprise us. She had 12 seizures during the EEG, 3-4 after they unhooked her and has had 7 in the last hour. What the !@* Dr Frost wasn't even in clinic today, (he was working at the hospital), but love him as we do, he came over to see Kylie himself. We had the option of admitting her or taking her home and trying to handle it here. We decided to go home, especially after he told us about all the junk going through the hospital right now, none of which we need. We are stopping the diamox, loading if needed and checking in w/ him in the morning. If things start getting out of control tonight, we'll let him know and probably get admitted. I told him we are going to Seseme Street Live next week, so we better be better by then. =) We have also decided that it is not going to be a matter of if she has surgery, it has now become a matter of when. We have one more step before brain surgery and we are having it scheduled tomorrow. She needs to have an MSI, which is kind of the mother load of EEGs. It will tell us exactly where her seizures are coming from. He will compare that to all of her data from Detroit, her MRIs, her past EEGs, look at all of her failed meds and the fact she is still having seizures on 5 meds, then present her to surgical conference. He does not want to add any more meds to her cocktail, so surgery is the next step. So, that's where we are at. I'm still having trouble comprehending all this but please keep Kylie in your prayers.

Thursday, January 11, 2007 11:13 PM CST

Our friend Tori earned her angel wings this morning. Please pray for peace and comfort in her mommy and daddy's heart. Our 7940 moms spent the evening with them and I can't even begin to tell you what wonderful people they are and how much their loss is felt.
As for Kylie, we got the ok from Dr Frost to stop the zonegran. I'm going to wait until monday, as I work all weekend and don't want to have to worry about any seizure business. She continues to do wonderfully. Her PT actually made me tear up yesterday. She came in the afternoon to work w/ her and Kylie walked over to her. Her PT then started tearing up and said she was all choked up over the progress Kylie has made since she has last seen her, which was right before Christmas. We heard lots of "Wows" during her session, which was heaven to my ears. We get to switch from the AFOs, (which are full leg braces and which I have been really lax about making her wear- I know Shannon- bad mom!) and we get to try SMOs, which are just braces for her feet. She tends to turn her left foot in if she stands for too long. We'll have to get her into Gillette to get them made. I know we have a long journey ahead of us, but if our girl continues to work hard, I know we'll get there. She just sparkles and is truely an absolute joy to have in our lives.

Wednesday, January 10, 2007 7:24 AM CST

**Update wed 530pm***** Please pray for strength and comfort for Tori's mom and dad, as they prepare for her to meet the angels. Please visit their site at www.caringbridge.com/visit/toriroth and let them know there are so many people behind them.

Good morning. Looks like the MN winters are sneaking back up on us. It's freezing outside! Everyone seems to be feeling better around here. The girls have been in really good moods and their noses have cleared up. Kylie has been more tired than usual, so I do think this new med is causing it. We have not seen any more seizure activity, (knock on wood!), so I'm going to try and get ahold of Dr Frost's office and see if we can stop the rest of the zonegran. 6 seizure meds seems a little excessive to me. We started ECFE last night~ a toddler gym class. Kylie had a great time. She is just so friendly and was walking up to everyone to say hi, asking them what everything was and was trying to keep up with the other kids. As I was watching her walk around, I was reminded what a blessing it is that she can walk. I can't imagine taking her when she was crawling around. I saw a mom from our summer ECFE class, who acted like Kylie was breakable glass everytime her kid got near her, (I think the AFOs freaked her out) and really wouldn't let her kid play w/ Ky. So, this time I wanted to stick my tongue out at her and yell "My kid can walk too!" We practiced hard on walking up steps, going down slides and riding trikes. We still have a ways to go to build up her endurance, as she has to take a break every 20 feet or so. She is probably still a year away from running but we will continue to work hard. Therapy this week has been going pretty good. She was signing "playdough" and "color", which are both new for her. She now knows the letters A, G and O, so we will continue to work on them so she doesn't forget them. My dad and brother Ben watched both girls all day on saturday, while Neil, my mom, Kari, Laura and I took 9 hours of Infant/Child 1st Aid and CPR. The girls watched a lot of football, then went out to lunch w/ the boys, where they fed both girls their own FULL grilled cheese sandwhich and side of fries, (mind you, Ava only has 3 teeth and is 11 mo old). So, next time they babysit I will make lunch ahead of time. We got together w/ the Ueland family on sunday and it was nice to catch up w/ everyone. Yesterday was the 1 year anniversery of GG Ueland's death. It seems like just yesterday and I still can't believe she never got to hold Ava. She used to make a quilt for each grandchild and great-grandchild. Since Ava never got a special quilt, I am attempting to make one for her birthday. Who knows if it will turn out but I thought it would be fun to try. Well, that's about all for now. Kylie has therapy the rest of the week and music class tomorrow night with my mom. She is starting an ECFE art class on saturday mornings w/ Neil, so they should have a good time. Please continue to keep the Roth family in your prayers. Miss Tori is home on hospice and could use lots of prayers. www.caringbridge.com/visit/toriroth
Also, I have some dates available for serving dinner at the Ronald McDonald House. Please let me know if you are interested.

Friday, January 5, 2007 12:48 AM CST

Link to article about Kylie ~ http://www.swcbulletin.com

Hi all. It is pure misery her at the Gibbons home. Kylie is now running a fever, (suprisingly, as her temp was super low in the hospital- 94-95) and her nose has let loose rivers of fun. She is coughing, whiney and feels like crap. Ava was up at 4am and screamed a good chunk of the night. She finally fell back asleep around 7, then Kylie was up. We brought Ava in and she has another ear infection. She is also cutting new teeth, so not a great combo. Can't wait for those tubes! I feel like a truck has run me down, probably from lack of sleep. I had picked up to work tonight but can't go in, since we have 2 screaming babies and Neil would probably file for the big "D" if I left. We started Kylie on her new seizure med this morning and we are really hoping to see positive results. I would love to have her off the zonegran totally. So, she is now on 6 seizure meds (split into 11 different doses), 1 antibiotic (2x a day), a sleeping pill, a vitamin and 1 omega 3 supplement. Too much for 1 little body, if you ask me. But, we'll do what works. The dr called back and the radiologist confirmed a right side maxillary sinus infection. I think we'll wait until she gets another one before we see ENT. All of her therapy got cancelled this week, so we'll start fresh this week. Kylie has learned a few new letters and has a few new words and signs. There was a picture of an apple in a book and she pointed to it and signed apple, something we haven't worked on in over a month. Go figure. Well, I'm going to try and nap w/ the girls. I'll have to load them up w/ tylenol, then cross my fingers. Have a good weekend! The Gibbons Family

Tuesday, January 2, 2007 11:45 AM CST

Link to article about Kylie ~ http://www.swcbulletin.com

***UPDATE 1/4 1pm***
Kylie is doing much better today and we are going to be going home this afternoon. We won't have the final CT report back but out ped will call us with it later. She will go home on oral antibiotics and they will let us know if it needs to be changed. So, we still aren't exactly sure what happened. When I talked w/ Dr Frost's nurse this morning, they were pretty sure she had a big seizure, due to her unresponsiveness, recent seizure activity and elevated blood sugar. So, they are starting her on yet another med, diamox, which is used to control high blood pressure. But, they have had good success rates w/ TS kids and seizure control by using this med. It has properties similar to zonegran, which worked great for Kylie's seizures but w/ fewer side effects and no cognitive impairment, (which we saw w/ the zonegran). The main things we have to watch for are dizziness and lightheadedness, (isn't that her norm?) and mood changes. If she starts getting irritable, we can assume it's the med. We should see improvement by early next week. If so, she can come off the zonegran totally. If not, they want to hook her up to EEG to see if the seizures are coming from the same area they were previously and if so, proceed w/ surgery to remove the tubor causing the seizures. I was like Whoa! Put the brakes on! Surgery was the last thing on my mind and if we can avoid doing it, we will. Dr Frost came by later and after listening to the whole story, said he's not convinced it was a seizure but he would've loaded her to see if she snapped out of it and at the very least, to cover her since she wasn't keeping her seizure meds down, (which I finally got in her by 3 am). When Dr Frost came by, Kylie gave him a huge grin, then 3 big kisses. She just loves him. So, if she happens to do this again, we will load her and see what happens. But, she is back to her very active self and is wanting my undivided attention. Thanks for checking in on us!

***UPDATE 1/3 1130pm***
Kylie was admitted to St Paul Children's tonight. She vomitted after dinner, then passed out. I gave her a bath and she face planted in the tub when I was washing her hair. She continued to vomit after the bath, all while still being out. Her tone was horrible, almost jello like. So, we brought her to the ER, where she had a head and sinus CT and abdominal xray. Her CT showed impacted left sinuses, so she is being started on IV antibiotics. She is getting IV fluids and got a dose of IV zofran, but continued to vomit after the zofran. Because of that, they decided to do an abdominal xray to check for a bowel obstruction, since the zofran should've worked. The xray looked ok, just some impacted bowels. So, they aren't sure what's going on w/ her. Her temp was also really low, despite warming blankets, and her bp was low. Her blood sugar was also high (200), which can be from stress but since it was slightly elevated on friday when she was healthy, I am concerned. Hopefully her regular ped will round tomorrow, so I can talk it over w/ her. She does get the vomitting w/ her sinus infections but this also could've been a big seizure. Who knows- maybe even the good ol flu. But, no one else has been sick, so we will see. I tried calling Dr Frost's office again today but still have not heard back. If this was a seizure, they are going to be getting a piece of my mind, especially since we were supposed to adjust her meds a week ago, after I talked to them about her other seizures. We are in room 4240. # 651-220-7103.
..............

Good Morning. Please keep Tori Roth in your prayers. She is a sweet little 2 year old who has been battling cancer and the recent scans do not look good. She is now home on hospice. Her mom is a part of our 7940 mom's group. www.caringbridge.com/visit/toriroth

On the home front, Kylie is not feeling so hot today. We had to wake her up at 9 to take her meds and then she fell back alseep at 930 and slept for another hour. She has a fever, won't eat, and is content to just sit in the recliner and watch Elmo. Every once in awhile, she will call out to me and wave her doll's hand at me or Elmo's hand and say "Hi!". Cracks me up. So, we will see if this develops into a sinus infection. She was pointing at her nose yesterday but who knows. She is enjoying her first glass of 7-up. She is supposed to have her first dentist appointment tomorrow and it took forever to get her in, so I am really hoping she can go. She has a small spot on her front tooth that I am praying is a cavity. If it's not, it is most likely a TS dental pit. Sometimes people with TS can get these tiny pits all over their teeth, which can be fixed w/ cosmetic dentristy but we'd rather not go there. Even though these are baby teeth, the permanent teeth would most likely have the pits if the baby tooth do. Also, all of the antibiotics have probably already recked havoc on her permanent teeth. I have not heard back from Dr Frost's office but we haven't seen a seizure since last wed, so I'll give them until the end of the week to call back. Her labs looked much better this time around. Her iron level was actually on the high end of normal, so good-bye iron infusions! We are still waiting on a few drug levels. Her blood glucose was slightly elevated, (norm in kids is 60-105 & Ky's was 127). So, I am slightly concerned, especially since Dr Frost was originally concerned w/ her pancreas. I hate to think what all these seizure meds are doing to her organs. I do have to share the "Great Shoe Capade" from yesterday. I took Kylie to Stride Rite on saturday for new shoes, since her feet have been growing like mad. She got some cute pink tennies. On sunday, we were cleaning and I put them on the shelf. I walked away for a few minutes and when I came back, Kylie had thrown the shoes all over the place. I could not find one shoe. We spent all day yesterday looking for it and Grandma Sue and I even went through all the trash outside and under the snow in the front yard. No shoe. We looked under all furniture, in toy bins, in her art stuff, everywhere. No shoe. I was super frustrsated and told Kylie, "Mommy is ver angry you lost your shoe. Where did you put it?" She picked up Ava's shoe and handed it to me. I told her no and showed her the other shoe. I went to the closet and when I came back, she was walking over w/ the missing shoe! I kid you not- 3 adults searched the house high and low forever and she comes up w/ it in minutes. I still don't know where she had it. I guess I should've asked her the first time. =) We did get a new supply of "Kylie's Hope" stickers, which you can put on the window of your car, the bumper or whatever else you want to do w/ it. They were created by Neil's cousin, Kelly and were part of the golf tourney. Then, if anyone asks you what it's for, you can tell them about our sweetie and her battle w/ TS. It's just another idea to help spread the word on TS. If anyone would like one, just send me an email. They are no charge. Thanks and have a great day!!

Saturday, December 30, 2006 9:46 AM CST

***NEW PICS IN PHOTO ALBUM***
Good morning. I want to wish you all a very happy New Year! I want to thank each and every one of you, for continuing to follow Kylie's story, for keeping her in your prayers and for being such a huge sorce of support for us. We love you all so much! As for Miss Kylie, she has really suprised us. She now knows the letter A. She can pick it out of a group of letters or out of a word. So, I guess we will be working on the alphabet! We haven't seen a seizure since tueday, so hopefully they will continue to stay away. Anyways, I hope you all have a wonderful weekend! Much love~ The Gibbons Family

Wednesday, December 27, 2006 10:42 PM CST

Good evening. We have been having major computer issues, so hopefully it won't crash be fore this posts! I hope you all had a wonderful Christmas. We had brunch on saturday with Grandma Sue, then to my aunt and uncle's for the Perlt family christmas. The girls had a great time playing with their cousin Maddie. Christmas Eve, Neil and I took the kids to church, where I spent most of mass in the back of church, with a very vocal Ava. We went to Andy and Andrea's for dinner and presents and then spent Christmas day at home and then dinner at my parents. What a nice, low key day. The kids got way too many presents and we ate way too much food but we loved just being together, enjoying our children. The girls got matching Cabbage Patch dolls, (which they love!) but Ky's favorite has to be her own personal laptop (toy) from Grandma Sue. Now she can type just like mom! Ava loves the TMX Elmo and I can just imagine the fun they are going to have when we go to Seseme Street Live next month. Unfortunately, we have continued to see some seizures. Nowhere near where we have been in the past but a yucky feeling altogether. =( Suprisingly, Kylie is doing fabulous developmentaly. She is walking more than crawling and although her endurance has a ways to go, walking seems to be her thing. She seems to understand just about everthing we say to her, or as much as any 2 year old does. She still has alot of work ahead of her in the speech department but the signs are really coming. We couldn't figure out why she kept shaking her hands, until we realized she was doing the sign for "play". Tonight, she was even matching up the puzzle pieces to the correct slot. She learned how to really dance and loves tapping her feet to music. We have been working hard on "No". When she is touching something she isn't supposed to, we tell her "No touch- look with your eyes". She stops, then points to her eyes (or sometimes ears) =). The other day, I said "No touch" and before I could get the rest out, she was pointing to her eyes. She is such a cutie sometimes. She is getting really good at sharing and not taking things away from kids. She is also starting to help me dress her and likes to put "hats" (or bowls) on Ava's head and today actually put a necklace on herself and Ava. Poor Neil, living with 3 girly girls. =) I talked w/ Dr Frost's office today and they are supposed to call me tomorrow w/ a plan. I refuse to put her back on the high dose of zonegran, since off of it, her development is flurishing and her fevers have pretty much disappeared. Yet, I don't want to live the seizure nightmare again. It just seems like we are damned if we do, damned if we don't. Keeping her seizure free and as undrugged out as possible the next few months could be criticle to her overall development, since the 1st 3 years in life are super important. We'll see if Dr Frost can work some magic. We took the girls to the Children's Museum today and they had a blast. Kylie definately wins the award for most friendly- she would saunter up to anyone and everyone, checking out what they had in their bags for snack, what kind of earrings they were wearing and to see if she could pull anyone's sticker off. She even waddled up to one guy, just so she could shake his hand. Kylie pretty much walked the entire time, so you would think she would be out early. 945pm and we were still waiting for the melatonin to kick in. I have been having an urge to slip some to Ava (just kidding), as she has been a real sucky sleeper latley. Someone (the other parent), has gotten both girls into a horrible habit this past week. They now expect to be rocked to sleep, then Ava is awake with a scream an hour later because she wants to sleep with US! I woke up this morning w/ no pillow, sleeping at the foot of the bed, Neil was sleeping on the floor and both girls were happily sprawled out across our bed. This situation will be ending this weekend, otherwise they will all be sleeping on the floor while I have the bed to myself. We have a full weekend planned except this time, Neil and I will be sneaking out for a few dates, while the gilrs hang out w/ Grandma Karen. We have been busy trying to get everything organized, cleaned out and put in order. I have training for work the next 2 days, so Neil will be doing some solo daddy duty, w/ possibly a little help from Grandma Karen. Kylie is having a slew of labs drawn from homecare on friday. They are rechecking her iron, as well as doing a bunch of drug levels. If some are low, it could explain the seizure activity and will tell them which meds to increase. We are going to stay on the small amount of zonegran, since they think if we take it away, we are not going to be sitting in a pretty place with seizure control. Sooooooooo...................... please pray for NO SEIZURES!!!!

Sunday, December 24, 2006 0:35 AM CST

We just want to wish everyone a VERY Merry Christmas and many blessings for 2007. Please continue to pray the seizure monster will leave Miss Kylie alone, as well as for all of Kylie's other friends who are battling epilepsy. Also, many prayers for the Olson family, who are missing their sweet angels this Christmas. We took the girls to see Santa earlier this week and Kylie had a MAJOR freakout, so Ava got a solo picture. Kylie has been signing up a storm lately. She now signs "read please" and "more please". Last night, I put her to bed and she was crying, wanting to get out of her crib. I went in to tell her to go to sleep and she started pointing to me and signing please, as in "please pick me up!" Of course, I melted and we snuggled on the couch. She has also been walking all over the place, so my wish that she would walk by Christmas has really come true! Now, if only we can keep the seizures away...... Merry Christmas and hold your babies close tonight.

Sunday, December 17, 2006 11:05 PM CST

UPDATE wednesday 12/20: Ear tubes for Ava in Jan. She registered a 0 on the hearing test. She can hear but everything sounds like it's under water. If Kylie get 2 or more sinus/ear infections by the end of feb, she will have sinus surgery again and have cultures done. If we can keep the infections to every 4 months or so, we can hold off.Keep your fingers crossed!
UPDATE monday 12/18: I have been meaning to send a HUGE thank you to the confirmation class at St Luke's Lutheran Church in Cottage Grove. For their project, they made blankets for the kids on 7940, in honor of Kylie. They also donated books, videos, crafts and toys. Here is what the attached note on each blanket said~ "Kylie's Hope- Praying for Miracles~ This blanket was made with love by the confirmation kids at St. Luke's Lutheran Church in Cottage Grove, MN. We cannot begin to imagine the struggle you are dealing with right now, but hope that this blanket brings comfort and warmth to you and your family during this difficult time. Our inspiration was Kylie Jo Gibbons, a little girl who has dealt with so many difficullt things in her short life, more than most of us will deal with in a life time. No matter what Kylie has gone through, she always has a smile on her face. WSe will continue to pray for you and hope that God brings you the strength you need." Thank you all SO much! To those of you who live in the Cottage Grove area- there is going to be an article in the Washington County area paper about Kylie and the confirmation class. It should be out either this week or next week. On the home front- Kylie did awesome in therapy today. She was copying all of the therapists signs and was sounding out new words. She went to Auntie Kari's basket ball game w/ Grandma Karen, where she charmed the crowd. As for Ava, she had a horrible rash w/ huge hives/welts all over her body. She does not have roseola but does have a super nasty ear infection, which caused her body's immune response to go haywire. Hence, the rash. She still had a fever today and was absolutely miserable. The girls see ENT tomorrow, so I'll update later. Please keep my cousin BJ in your prayers. He leaves next tuesday for his 2nd tour of duty in Iraq. My brother Andy will be joining him soon. Godspeed.......................

Good evening. Kylie has done great this weekend and we haven't seen any more "suspcious" seizure activity. (Knocking LOUDLY on wood!) Kylie has been doing great. She started signing "more, please" and finally put waving and saying hi together. It is her new favorite thing to do and we met a lot of new people at Target tonight. =) She also loves to drop things on the floor, then put her hands on her cheecks or over her mouth, as in "Oh no!" She breaks out in belly laughs when we say it. She has been very chatty this weekend and was in a great mood. She seems to be on hiatus from walking, so we will be doing a lot of AFO wearing this week. Poor Ava seems to have roseola. Her fever finally broke today and then she broke out in hives and a rash. She has been pretty crabby and is also sporting 2 new bottom teeth. Kylie may find this out the hard way if she keeps shoving her fingers in Ava's mouth.=) My mom had the girls all day yesterday while we did a makeover on my parents' living room. It turned out pretty good, after a 15 hour stretch. My body was feeling pain this morning in muscles I didn't even know existed. But, we had a good time. The girls both see Dr Karlen (ENT)this week, to see if Ava will be getting tubes and for Kylie's follow-up. Kylie looks so good right now and since her fevers have been gone since coming off the zonegran, I have a feeling we are going to be able to avoid sinus surgery. Keep your fingers crossed! As for Ava, tubes will depend on her hearing test and if she still has fluid in them. I haven't noticed any problems with her hearing, so we will see. She says "mama", "dada", "hi" and today said "yum!" when I was telling her her food was good. Kylie has a full week of therapy, then we are taking next week off. Neil took the week off and I work 2 evenings at the hospital, so we are going to try and have a fun week. I will again try to update pics this week. I have them all printed off but just need to scan them into the computer. Please keep my cousin Lisa in your prayers. She is expecting a baby late spring and has been put on bedrest until she delivers. I keep telling her to enjoy it now, because after the baby comes, she will wish she was on bedrest. I dream of it daily... Before I forget, we have stickers for your car bumper/window that say "Kylie's Hope". Neil's cousin made them for the golf tourney and we have a few extras. If anyone would like one, please let me know. How neat one was spotted in Blaine today! It is our HOPE that Kylie will beat this nasty disease and there will one day be a cure!! More later..............

Thursday, December 14, 2006 10:53 PM CST

Good evening. We are having a sick day at our house today. Ava has had a fever all day and tonight was hoovering around 104. Very lethargic, very cuddly. I came home from work early and will bring her in tomorrow for an ear check if she is still running a fever. It amazes me how sick she seems w/ the fever, as I'm sure any one of us would be. I am so used to Kylie with her 104-105 temps, bouncing off walls. Just a reminder what a tough cookie Kylie is. As for Miss Kylie, the med wean was not quite going according to plan. We were seeing a few questionable episodes and I'm pretty sure she did in fact have a seizure on wednesday. =( Soooo...... she is staying on the 25 mg of zonegran and they increased her morning dose of lyrica. They said hopefully we should stop seeing "questionable episodes" by the end of the weekend. I have to check back next week w/ Dr Frost's office to see if we can finish the wean. We didn't see anything yesterday evening or today, so of course I am now second guessing myself. But, having seen her have hundreds of seizures~ when my heart falls to the pit of my stomach, I just know. So, please continue to keep our girl in your prayers, that her system was just working out a few kinks. I don't want to over analyize it- just hope we don't have to deal with it. I had a chance to get together w/ my 7940 moms last night and it was so good to see everyone. These woman are such an important part of my life and I don't know where I would be today without them. I then saw my other girls, to celebrate Jody's b-day. I was still home and tucked in by 1130pm, a sure sign my 20's are numbered. =) Huge prayer requests for Miss Tori and her battle against cancer. Praying she gets her Christmas miracle. I'm turning in for the night~ we are sharing a bed w/ 4 tonight, so I'm sure it will be a restful night. More later..........

Monday, December 11, 2006 10:53 PM CST

Good evening and happy birthday to my good friend Jody! I hope this next year brings you all your heart desires. =) I thought it was about time for an update~ I just can't believe how fast time is going by! My baby girl is going to be 1 in another month and a half and I feel like she was just born, (and the scale does too!=) Anyways, everything has been going pretty good around here. Kylie's therapist commented today how quickly Kylie is progressing. She seems to be learning new things daily. Her walking is so much better. She is pretty balanced and walks arcoss the room, yet she still prefers to crawl longer distances. Slowly but surely, she is getting there. Her speech is still hit or miss. She is nowhere near where she should be but she does understand most of what we are saying, or at least she seems to. She is sounding out so many words but just can't quite get the whole word out. She continues to harass her little sister and can't stand when Ava is playing with something. Ky immeadiately heads over to take it away. Ava just popped her first tooth, so Kylie better be careful putting her finger in her mouth! Ava is STILL not crawling and I am thinking she is going to skip it altogether. She loves to stand and pulled herself up today, holding onto my fingers. I talked w/ Dr Frost's office today and although tonight was supposed to be Kylie's last dose of zonegran, they are going to keep her on it for one more week, and then re-assess. We definately have not seen any of her typical seizures but have seen "the funny face" every once in awhile. It lasts just a few seconds and we can get her attention right away, so I am totally up in the air if it is seizure related or not. So, we will see. Otherwise, tomorrow marks 9 months since her last seizure! What a blessing it has been! We have been so, so busy lately. I worked a double shift on friday night, the ended up getting sat night off. So, we decided to head down to MPLS to see the Holidazzle parade. Apparently showing up an hour early wasn't early enough, as most of MN seemed to be there. We were about 4 rows back from the street but did see a few floats. After getting the girls to bed, we stayed up late wrapping presents and watching movies. I worked sunday evening, while Neil took the girls to my parents for dinner. Today, we bought our books, some coloring books, puzzles and magnadoodles for Children's Hospital. We plan on dropping them off sometime this week. Kylie has therapy everday this week, I am getting together with friends, Neil is busy working and then Andrea and I are doing "Extreme Makeover" on my mom's living room this weekend. 15 years of flowered wall paper and lace curtains are coming down! I know she is very nervous about what we will come up with but just know it won't be any worse than what was already there. =) I am hoping to get the kids outside some this week, since the weather has been gorgeous. Kylie played outside for a while today and loved it. I really will update with some new pics this week. Have a good one! Much love~ The Gibbons Family

Monday, December 4, 2006 11:55 AM CST

Good morning. I hope you all had a great weekend. We were very busy. We had a family Christmas part and I had 2 ornamnet exchanges w/ my girlfriends. Kylie had a great time at the family party and got to meet many of our relatives who have been praying for her. She also got to play with a little girl named McKenna and she actually said "Kenna". I was amazed, yet sad, as we are missing our Muffin so much. She was in a great mood all night. We went out to lunch on sat w/ my mom and Kylie was again walking up to complete strangers, checking out what they were having for lunch and trying to get them to share. We seriously need to work on our "stranger danger". Yesterday, my girls from highschool came over and we got to play with the new babies. It was nice to get caught up w/ everyone. Tomorrow starts the final week of the zonegran and unfortunately, we are starting to question seizure activity. The past few weeks, Kylie gets a look on her face that she used to get before having a seizure. It has happened maybe 3 times that we have seen and lasts for a few seconds and then she is fine. She doesn't end up having one, so who knows if this is seizure stuff or not. I'm worried she is building up to something. So, if I see it happen again this week, I'll call Dr Frost and see if we can start increasing the pregabalin. Please keep praying she continues to do well and that the seizure monster leaves us the heck alone. I hate all of the manifestations of TS but epliepsy is just the icing on the cake. Last year at this time, we were still in the hospital, I had no Christmas shopping done, no decorations up, I was addressing my Christmas cards in the hospital and was massively prego. This has been such a different year and we are so enjoying being home w/ healthy children. I am not ready to give that up again. So, staying cheery, send up a few extra prayers for our girl. Kylie got her second haircut on saturday and is looking quite cute. We have a busy week full of therapies and work but no dr appts scheduled (yeah!) Hope you all have a great week! Bundle up~ it's chilly outside!
PS I'll try and post new pics this week.
PPS Happy belated b-day Lori!!!

Thursday, November 30, 2006 11:55 PM CST

Good evening. Although I am keeping my fingers tightly crossed, I have to say the med wean is going awesome. We have a new little girl slowly emerging from the effects of the dreaded seizure meds. She is so full of new sounds and although her vocab is still pretty small, she is sounding out so many new work and making a ton of new sounds. She pointed at her neck today and I said "neck", then she said, "Neeeeec". She loves to carry the phone around the house and talk into it, saying, "ha". This is something she did a year ago but as she has done w/ so many words, said them a few times and then they disappear. She was dusting today and said, "dus". She also is facinated w/ her baby doll, who we call "Anna" and Kylie actually started saying "Anna" today. She said "yum" during therapy yesterday, while playing w/ play food and has consistantly been saying "in" when putting objects into a bucket. There are so many more and it is just so exciting! I think the best part about it all is she seems to understand so much more now, sort of like the "fog" is lifting. Her walking skills are really coming along too. We have caught her so many times letting go of the furniture and walking by herself, although still short distances of 5-10 feet but she is doing it without us asking her to. She is so much more steady than she was a month ago. It's so fun to watch her progress. Ava has become very clingly lately and I think she is finally teething. As soon as I got home today, her arms went up to me and she started saying, "Momma! Momma!" She is STILL not crawling but rolling everywhere and she will stand and hold onto furniture if you get her into position. =) We had another attempt at seeing Santa yesterday and still no go for Ky. We did finish our Christmas shopping though. Kylie went to KinderMusik w/ grandma tonight, then to Kari's b-ball game. She threw-up at the game, so she had an early night. We have an early morning iron infusion tomorrow, so I am turning in. Just in-case anyone is interested, new books are being collected for Children's hospital, in honor of Drew and McKenna. If anyone would like to participate, please let me know. Have a good weekend! Much Love~ The Gibbons Family

Sunday, November 26, 2006 8:58 PM CST

Good evening. I hope you all had a wonderful Thanksgiving. We were so thankful that we got to spend the day with family this year, not in the hospital. We enjoyed the annual Perlt family football game and the girls had a fun time playing at the playground, until Kylie face-planted in the sand and I had to pull tiny rocks out of her nose/mouth. After a few tears, she was ok, then we headed to my mom's for turkey. I got up friday at the crack of dawn and spent 12, (yes 12), hours of black friday shopping w/ my aunt and cousin. We had a great time and I finished almost all of our Christmas shopping. We had my family over for dinner friday night, then I crashed. We had our family pics taken on saturday but Kylie was in such a funk, I'm sure they didn't turn out very well. She would barely crack a smile, kept signing "eat" the whole time and was super sleepy. She slept in and got her meds late, so I am thinking it was that, as one of them makes her tired. After lunch, she was back to herself. We went and got our tree and spent some good family time together sat night. We are keeping a close eye on Ky, making sure we aren't seeing any seizure activity. Her zonegran goes down to 25mg on tues and then she will be off of it completely in 2 weeks. Grandma Karen took her to her iron infusion on friday and they decided to extend it one more week, then reasses. They decided she is going to be unable to do the oral supplements, so we may finish out the 10 weeks of infusions. They think her port is causing the fevers but she has actually dine much better w/ the fevers since coming off the zonegran. I have to make her appt this week to see ENT, where unfortunately, Miss Ava is also going to begin seeing Dr Karlen. Her ped said she needs tubes, as she has had fluid in her ears since august. We started her on her first antibiotic last week for a double ear infection. Her sinus symptoms have also cleared up since starting the antibiotic, so hoping she isn't following in Ky's footsteps. When she has her sinus surgery, we are going to try and get Ava's tubes at the same time. I guess we will be getting the 2 for 1 special. We are busy with therapy this week and a few appointments. We are bringing another TS family, who is here from Colorado, dinner tomorrow night. Tomorrow is also Grandpa Tom's 50th birthday. Happy Birthday Gramps!!! Kisses from your favorite girls............... Much love~ The Gibbons Family

Tuesday, November 21, 2006 10:56 AM CST

Good morning. I have to say, we have never had a better dr appt than we did yesterday. Kylie held my hand and walked all the way into Dr Frost's office, then proceeded to climb right up on his lap, flash him her huge trademark grin and then go on to check out his ears, his id tags and tie. He said that from a neurological standpoint, she looks great. So great, in fact, that of all of the TS kiddos he sees, she is one of the ones that are doing the best! He said she is progressing nicely and that even though it may seem slow and steady to us, sincew they last saw her in July, she has made leaps and bounds. How awesome it was to hear that. I guess all of our hard work may be paying off. He is not worried about her attention span, although she made a liar of me and her attention was perfect while we were in his office. =) He said to continue her therapies at home, so there are fewer distractions. She will be totally of the zonegran in 3 weeks, so we are asking for continued prayers the seizures will stay away. If she were to start up again, we would increase her lyrica instead. We will do a follow-up MRI and kidney u/s in 1 year, although they aren't expecting to see any changes. As for her fevers, he wants us to get a 2nd opinion from Ky's ID. They want us to see the other dr in the group and see what he thinks. They also want our ped to have a phone care confrence about her sinus/fever issues. They were debating to do an MRI to see if they see anything new that could cause the fevers but decided to hold off and have us proceed w/ the next sinus surgery if she is still running fevers after the zonegran. They agree that there is still a "missing piece" to the puzzle thaat no one has figureed out yet. Her fevers lately haven't been super high, so maybe the med wean is working. She will have to go another 6 months of no seizures before we discuss coming off another med. We gave our consent to have Kylie added to the national TS database, something new they are working on. The TS clinic in MN and TX are the only two groups approved at this time. The staff will be adding all of Ky's info to a database, all of her history, dx, meds, etc, so they can compare her info w/ hundreds of others. This will hopefully give us a better idea of what to expect down the road. Also, if another TS pt, say in WA, was having recurrent fevers w/ unknown orgin, they could type in the info into the database and Ky's info would pop up. Then, that dr and Dr Frost could compare notes. This is another way that we can find out if Kylie would qualify for clinical trials sometime down the road. Pretty cool. As we were leaving the office, I asked how many kids go from having as many seizures as Kylie was having and then having the seizures stop, cold turkey. Their answer was none. They have never seen a kid have that many seizures and then have them stop, except with surgical intervention. I got all teary eyed when they said that and thought, Praise God! All of you who have taken the time to pray for my sweet girl~ I thank you, so, so much. And to Ky's 2 very special angels babies~ keep up the good work! We love you both!!All I can think of is that Kylie is truely a miracle. We will be celebrating many blessings this Thanksgiving~ the health of our children, the love of our family and friends, and the miracles that God has blessed our family with. Blessings to you all and have a wonderful Thanksgiving! Much Love~ The Gibbons Family

Sunday, November 19, 2006 8:56 AM CST

Good morning. The girls and I have survived round 3 of hunting. Neil should be home tonight and then I will get to hold this against him for the next year, whenever I want to get out. =) Grandma Karen was a huge help this weekend, while I spent the past 3 nights working. Kylie is doing great. Her drainage from her ear is gone and almost gone from her nose. She ran a low grade temp fri/sat but that would fit in with her cyclic fevers. On a good note, it has been awhile since they have hit 104-105. She had her iron infusion on friday and her hemeglobin is coming up nicely. It is around 10 and was 8.9 when we started. She will have her final infusion on friday and then they will recheck her iron levels. Depending on what they are, she will either continue the IV iron or switch to a small pill. I bet she will be on the pill, which will be much more convienent. We see Dr Frost tomorrow and I am excited for him to see how well she is doing. It will be nice to see him out of the hospital for a change. =) I have a list of things to ask him, (only 13 things or so) =). One of them is to discuss how easily distracted she gets. She can go from playing to one thing for 5 seconds, to the next for 3 seconds and then on to another for 4. I know a lot of it comes from being 2 but she seems much more extreme than other 2 y.o.'s that I know. She can sit and look at books for long periods, which is great. She has a book that plays Motzart and was lokking at it this morning. I looked over and everytime she pushed the button to play the music, she would start nodding her head and do a little dance. It was so cute. Miss Ava is doing good as well. She's still not crawling but rolling all over the place and will stand w/ asst. She was even trying to pull up on the chair the other day. She is just super content to sit in one spot and play w/ toys. She is very sweet and becoming more and more verbal everyday. I just love my 2 girls and thank God everyday for the 2 of them. Well, I am going to go attempt grochery shopping w/ them. Wish me luck! Please continue to keep the Olson family in your prayers, as they spend their 1st thanksgiving without their beloved Muffin and their 2nd without sweet Drew. We love you guys!! Also, please continue to keep Kylie's friend Kierstin in your prayers, as she battles the seizure monster, (www.caringbridge.com/visit/kierstindublinske). Much love~ The Gibbons Family

Monday, November 13, 2006 11:04 PM CST

*** Please keep Kylie's good friend Kierstin in your prayers. Kierstin also has TS and went through brain surgery in sept to remove a big tubor. Her seizures came back 2 weeks later and now she is again having a horrible seizure type called infantile spasms. She is facing another round of brain surgery in the upcoming months. Please leave her family some words of encouragement at www.caringbridge.com/visit/kierstindublinske . ***
Good evening. I hope you all had a wonderful weekend. Kylie finished her antibiotic, (for her sinus infection), yesterday. Unfortunately, sat morning her ear started to drain pus. ANother ear infection, another round of antibiotics. This time, she will be on it for 20 days, as well as on ear drops for the next few days. I'm bummed she has had back to back infections again and since it is only the start of the cold/flu season, I'm not looking forward to this winter. We are hoping to put off any sinus sugeries until after the new year, so hopefully this round of antibiotics will work. We decrease her zonegran tomorrow night to 50 mg, so please keep praying those nasty seizures stay away. One more month and she should be off of it for good. Then, just 4 seizure meds left. =) We started her on an omega 3 supplement, which is supposed to help with cognitive development but could potentially cause issues w/ her von willdebrans disease. Hopefully, she will do fine with it. I have read some great things about the supplement and would love for her to do ok with it. We had to break out the nebulizer for her today. She was wheezing so bad, it sounded like she swallowed a whistle! I first thought it was in her nose but you could feel it in her chest. She seemed much better after the neb. Kylie and I went to visit our friend Jess today on 7940. Kylie got caught up with all of her nurses and got to hang w/ Jess and family. She was pretty quiet while we were there, almost silent. Maybe she was having flashbacks. =) She had OT this morning and did pretty good. Tomorrow, she has speech and a session w/ the sp ed teacher. She got evaluated last week for a PCA (personal care assistant and I am sad to say she qualified for 7 hours a week of PCA care. She qualified based on the fact that she is not walking and that she needs supervision while eating. If we go ahead w/ getting a PCA, we will split it up into 2 days a week and work strictly on walking. I am not real comfortable with the idea yet, so we will see. It would be nice to give Ava some undivided attention, instead of stressing on Ky and her therapies 24/7. Also, if the unfortunate happens and her seizures come back, she needs to be watched constantly and then we will pretty much be homebound. I feel panicky even thinking about it, so.........moving on~ I had the great pleasure of serving dinner at the Ronald McDonald House w/ Drew's Crew tonight. We had a great time and it felt wonderful being able to give back to others. We were so greatful for having homecooked meals when we stayed at RMDH in Detroit. It was one less thing to worry about while we were busy worring about our girl. Many of the families that are there have been there for months. Many are from different states and have children that have had organ transplants or bone marrow transplants. I definately plan on serving again and hope to get a group together in honor of Kylie. If anyone would be interested in doing so, please let me know. A huge thanks to the confirmation class who are making blankets for the kids on 7940, in honor of Kylie. Words can not express how touched our family is. I know the children, as well as the families, will be touched as well. I can't even explain how depressing it is to be in the hospitals over the holidays and I know this project will bring smiles to so many. So again, thank you! I have been reflecting a lot lately about how blessed we have been for the past few months. Kylie reached the 8 month mark yesterday of being seizure free! (Still knocking on wood!!!) I am feeling a huge need to give back, some how, some way. I feel that this path in life was chosen for us for a reason. I prayed every night when I was pregnant w/ Kylie that she would grow up to do God's work. I don't think her being sick was exactly what I had in mind but when I think of how many lives she has touched, how many prayers that have been said, how many others that have been helped because of her, I think maybe this is how things were meant to be. Aside from doing the golf tournament and the TS walk, I am searching to do something for others in honor of my sweet girl. I have been thinking about this for the past few months and am still searching for answers, but I will continue to pray that God will lead me in the right direction. Have a wonderful week! Much love~ The Gibbons Family

Saturday, November 11, 2006 9:27 AM CST

Good morning. I want to first ask everyone to keep one of Kylie's little friend's in your prayers. Jess is battling the seizure monster and was admitted to Children's last night. (www.caringbridge.org/nd/jessmarie). Her parents were a great source of strength to us when Kylie was in the hospital and they are an awesome family. Also, please continue to keep the Olson family in your prayers, as the holiday season approaches. They are missing their angels like crazy, (www.caringbridge.org/mn/drewolson).I also want to take a moment to thank all of the US veterans and current military, for fighting for our freedom and for keeping our country safe. As for Kylie, her 2nd iron infusion went off w/o a hitch yesterday. They will check her iron levels after her last infusion at the end of the month but they did check her hgb and other counts yesterday, all of which are a tiny bit higher than the previous week. So, we are headed in the right direction. The dr sent her for a chest xray yesterday because her cough sounds horrendous but everything looks clear. She just doesn't seem to be shaking this sinus infection, so they may change her antibiotic this week. The vomitting continues and happened this morning as soon as I got all 5 meds into hre. Grrrrr. Therapy went pretty good this week. She walked about 10 feet on her own earlier in the week but has seemed a little floppier the past few days. This is pretty common for her when she is on antibiotics. Her OT swears she did the signs for mom, dad and baby but I'll have to see it to believe it. We took the girls to MOA last night and got Ava's pictures taken. They turned out pretty cute, so I'll try and post some later. Kylie has been full of giggles lately. Everything and anything has been cracking her up. I love seeing her so happy all the time. Have a great weekend. Much love~ The Gibbons Family

Wednesday, November 8, 2006 11:12 AM CST

Good morning. Neil took Kylie to the doctor this morning and she does indeed have another sinus infection, as well as thrush in her mouth. She has been pulling at her tongue for the past week but I assumed she just had a sore throat. Bad mom. So, we will start her on an antibiotoc, as well as an antifungal today. She is still running fevers off and on, but they are staying around 101 or lower, so that is great. Her cough is still horrible and she threw up on Neil this morning. She has been busy this week with her therapies and is getting stronger with her walking. She now likes to let go of whatever she is holding on to and walk to one of her little friends, then hold on to them for support and starts in w/ the giggles. However, they don't think it's too funny. =) We have been reading lots of books and then she will start signing for whatever we are reading about, (ie dog, hat), so she really seems to understand what is going on, if she could only just tell us in words. Her speech skills are still scattered but coming along. Her and Ava are becoming such good friends. Last night they were in their highchairs, "talking" to each other and giving each other the deepest belly laughs that I have ever seen. It was so funny. Kylie also likes to "read" her books. I was peaking around the corner the morning and Kylie had a magazine in Ava's lap and was pointing to stuff in it and babbling to her, as Ava watched her face intently. It has been so hard having them so close together but I think is going to be so great for them in the long run. They are teaching each other new things every day. We are approaching the 8 mo mark since Kylie's last seizure, (knock on wood!) and have been enjoying every minute of it. We are still on the constant lookout for one and I don't ever think I will rest easy, knowing they could come back at any time. I was telling a friend the other day that I feel like Kylie could be straight out of the movie, "Awakinings" w/ Robert DeNiro. In the movie, the patients at the hospital are all comatose, until they are given a new med and they all start to wake up, all experiencing life again. After awhile, the "honeymoon" phase ends, the meds stop working and they go back into their comatose states. Kylie is learing so much since the seizures stopped and the meds started working but I am still waiting for her honeymoon phase to end. But, we will continue to pray every day that doesn't happen. Neil is off tomorrow, so he gets to hang out w/ the kids for the day before he heads back out to the cabin tomorrow night. Kylie ha another iron infusion at the heme/onc clinc on friday, so hopefully her port will not be clotted. I am taking Ava to get her 9mo pics on friday night, so I will post them soon. Have a good week! Much love~ The Gibbons Family

Sunday, November 5, 2006 12:08 AM CST

Hi all. What a beautiful day out today. Unfortunately, we have a sicko on our hands. Kylie has all the signs of another sinus infection, plus she threw up all over my mom in church today, then again when we got home. She has been coughing so bad that she gags herself. She had fer first iron infusion on friday, which went pretty good. Her counts had actually come up prior to the infusion, but they are still low. She will have an infusion every friday through November, then we will recheck her counts. If they are normal, then she will try another oral supplement. If not, we will continue with the IV stuff for awhile. The dr talked about a new iron med that they put women who have heavy menstraution on. It hasn't been tested in kids before, (what ever is?), but they have been putting kids on it who have a hard time keeping their iron levels up and have been having good success w/ it. So, we will see. Ava had her 9mo check-up, weighing in at a whopping 22 lb, 6oz. and 29 in long. I talked w/ the dr about my concerns that she is not crawling yet, but Ava passed all her strength tests and she is actually advanced in her social/emotional development. The dr is attributing her not crawling to her large "fluffy" size. But, she is now clapping, doing "so big!", using a spoon (with a little help getting the food on the spoon), has said mama and dada and independently drinks out of a sippy cup. Kylie ia making great strides as well. Her walking is really coming along and she is doing tons of imitating and making new sounds. I really feel allof this therapy we are doing is helping her. I have been doing ok being a "single" mom too. We have had lots of help from Grandma's Karen and Sue and Neil should be back tomorrow night for a few days before he heads out again. I'm going to go rock w/ my girl. More later and enjoy the beautiful day.

Wednesday, November 1, 2006 3:11 PM CST

***NEW PICS***
Hi all. Today has been exhausting, to say the least. We have been running all day and Kylie's heme appt lasted 3 1/2 hrs, instead of the hour I figured we'd be there. Her port was clotted- again, so we ended up doing tpa- again. Her port has been both a blessing and a huge curse. They attached her to a urine bag, hoping to get a sample to rule out a bladder infection as a cause of her fevers. Of course, she wouldn't go there, so they left it attached to her and she went as soon as we got home, so now we have to get the sample back to the clinic. We also came home w/ instructions to bring back a stool sample, but I think I'll let Neil join in the fun for that one. They are also checking her urine, as well as stool, for blood. They are hoping to rule out some kind of bleed for the source of her anemia, since diet doesn't seem to be the cause. I asked how low her iron can get before we need to really get worried, (she is at 13 now and should be between 50-100). I didn't really get an answer but the dr did say kids who have lots of anemia issues in toddlerhood can sometimes have cognitive difficulties later in life, so it is impairative we get her levels up quickly. As if TS and the seizure meds alone aren't enough of a worry for cognitive impairment, now we have this to worry about. So, for the next 10 weeks or so, we will be spending every friday morning at the heme/onc clinic for iron infusions, since she can't take it orally. They drew a bunch of labs and blood cultures today in clinic, so hopefully we will have those results back by friday. Her blood pressure was a little high today, so they are going to keep an eye on it. She is at the age we start to watch her kidneys, as it is generally between now and 3 yrs that the kidney tumors start to form. Her last ultrasound was at the end of last year and everything looked great. I pray it stays that way. We decreased the zonegran by 25mg last night, so we are at 75mg for the next 2 weeks, then will go down another 25mg. I am praying SUPER hard we will not see any seizures. I was thinking back to last year at this time and thinking how different things are this year. Her seizures were so bad this time last year, as well as her sinuses. We spent Thanksgiving in the hospital and I am really hoping to stay out of it this year. Her PT was waiting for us when we got home from the clinic and she thinks Kylie's tone isn't as good this week as it was last week. Who knows. Her speech still seems to be getting better all the time, although most of it is gibberish. Kylie enjoyed her trick or treat outing yesterday. It was super cold, so they only made it to a few houses but I got a kick out of the little duckie, holding her daddy's hand, SLOWLY going up to each house. She had a glow necklace on, so I could easily keep track of her. She would stop every three feet or so, to check out a car's headlight, leaves crunching under her feet, or the glow of a pumpkin. Ava conked out right as we were leaving, so she and I stayed in. We then made the rounds to see the family and stopped by to see some friends. We ended up at a Halloween get-together and caught up with old friends. Neil is heading out hunting this week, so I am bracing myself for single motherhood for a while. I have a night of scrapping with my girlfriends planned for Friday and we plan on cleaning the house out this weekend. Also on Friday, we are going to meet a very special group of kids, the 4th grade class at Pullman Elementary, who have been praying for Kylie and making her cards. We'll have to dash back for therapy, then head to Children's for Ky's first iron infusion. I am going to try and update more pics tonight. Ava has her 9mo check up tomorrow and Kylie has a full day of therapy. Thanks to all of you that have continued to check in on us and have kept Kylie in your prayers. Words can not even express the gratitude and love we feel for you all. Much love- The Gibbons Family
PS I forgot to mention that we brought the kids to the local nursing home yesterday, to visit with the residents for Halloween. Kylie toddled up to an elderly gentleman, who was in a wheelchair, is blind and who they say never interacts w/ anyone. Anyone, that is, except our sweet girl. He picked her up, was chatting with her and smiling at her. How cool is that? =)

Sunday, October 29, 2006 11:52 PM CST

Good evening. The weekend flew by and I can't believe Halloween is 2 days away. Ava will be 9 months old on thursday and I can't figure out where the time has gone. Everyday I fall more and more in love with my girls. I really just can't describe it. As usual, we have been busy. Kylie's heme/onc appt got re-scheduled for wed, so we will be going this week. The girls got their flu shots on thurs and Ky got a pneumonia shot as well. They were both very brave and didn't even cry. Kylie's fevers started up again this weekend but have been staying around 100. She is cracking us up with this walking business. She thinks it's the funniest thing in the world to do and is in a fit of giggles when ever she walks towards us or even thinks about walking. And let me tell you- when she gets better at it, she won't be walking, she will be running. She power walks towards us, most recently like Frankenstein, (how fitting for the holiday) =)and is so proud doing so. She has now started walking towards one of us on her own, instead of between us. She still prefers to crawl and has become wickedly fast at crawling. Her PT has come up w/ a great idea of doing some kind of kinesiology (sp?) wrapping of her hips/pelvis, so she feels like she has support there. We tried it w/ coban last week just as a test and she did seem more sturdy, so this week she is going to try and make something better. Her speech seems to be picking up a little bit too. She has been "yelling" at her little friends or the cat saying "NNNNNNNNNNNNNOH", if someone is taking her toy or the cat is ignoring her. =) Her babbling seems a little different too, with differnt types of babble and sounding more like she is having a conversation w/ you. Maybe all of her therapy will actually pay off.=) The girls slept over at my moms last night, while Neil and I went to a halloween party, where we took 1st place for our costume. Neil had to work this morning but I actually got to sleep in for the first time in months. We spent the day cleaning and making halloween treats. I am going to try and update new pics this week but we think our main computer has a virus and I don't know how to download the pics to the laptop. My uncle is going to try and fix it this week. We are going to carve pumpkins tomorrow night and we will take the little duckies out on tueday night. Hopefully the weather will cooperate. We bump kylie's Zonegran down by 25 mg on tuesday, so keep you fingers crossed. Please continue to keep her in your prayers. Also, please keep Kylie's little friend Kierstin in your prayers. She had brain surgery in sept to remove some tubors, which stopped her seizures but the monster is now back. She is such a sweetie and really needs some prayers. Please continue to keep the Olson family in your prayers, as they struggle through the loss of their sweet babies. Love to you all- The Gibbons Family

Wednesday, October 25, 2006 2:39 PM CDT

Hi all. Our girl is continuing to take step and it is SO fun to watch! She needs help getting her balance to start but after awhile, will walk a short distance from one person to the next. I usually have to be on the receiving end, or she keeps turning around to grin at me. She also needs to hold on to an object while she is walking, so she doesn't focus on sitting down. Her favorite is a Faith Hill cd, (because we have to have faith!) and she is greatly enticed by a tootsie roll! Whatever it takes, we will work with it. She showed her stuff off at my mom's last night and had a big audience cheering her on. As soon as she makes it to me, she gets a HUGE grin on her face and then gets the giggles. I love it! I know she has two baby angels on either arm, helping keep her up! As far as her medical stuff goes, she is doing ok. She has a junky nose but seems ok. No fevers lately and we are just about approaching our 2 week mark. Dr Karlen (ENT) called me today and he said he talked w/ infectious disease and they wanted to take her into the OR to scope her sinuses, wash them out and do cultures. I told him about weaning the zonegran to see if that was the cause of the fevers and that it would take a total of 8 weeks to wean completely, so we are going to wait and see if that helps first. If we can avoid sedating her and doing procedures if at all possible, that's what I am gunning for. I want to try and keep her out of the hospital this winter. I also talked w/ her heme/onc dr and she wants to see Kylie on friday. I told her the iron was not going so well, so they are going to see if they can come up with other options but the bottom line is that her iron levels have to come up. We are also getting a standing order from homecare that if her port clots again, (as it has 4x now), the homecare nurse can do tpa, so we won't have to go into the clinic. How awesome is that? The girls are both getting their flu shots tomorrow and Kylie is getting her pneumonia shot as well. We have been busy with therapies this week. Ava loves to sit in on the sessions and do the singing/games w/ Kylie, (mainly babbling and blowing spit bubbles at them- her form of singing). I am really hoping she will crawl soon. There is always this nagging little voice in my head that keeps saying- what if something is wrong w/ her too? I know she doesn't have TS or low tone or any of Kylie's issues but my gosh- why do I have the laziest kids in the world? =) They sure are cute though! Ava's new thing is giving kisses- she comes right at you w/ her mouth wide open. We had dinner w/ my grandpa last night and Av gave him a big smacker! More later but continued prayers for Miss Kylie and her walking skills & no seizures, for our friends Caroline and Jess- that the seizure monster will leave them the heck alone, as well as for their mom's and dad's, who also need a break or even very long vacation from the monster, and for the Olson family- we love you guys!

Monday, October 23, 2006 11:38 AM CDT

UPDATE: Our girl took 7 steps tonight! On her own!! Keep your fingers crossed and the prayers coming!! I would love to see her walk into Dr Frost's office next month, or the very least, by Christmas. It would be my Cristmas miracle!!!

Good morning. I hope everyone had a good weekend. Kylie is doing good with the med wean and next tuesday, we bump the dose down another 25 mg. It will take a total of 8 weeks to be off it totally. Then, only 4 to go. =) In reality, she will never be off of seizure meds but it would be wonderful to get down to 1 or 2. Someday... We had a good weekend. The girls spent the evening w/ Auntie Andrea on friday, while Neil and I worked. We both worked again on sat, so they hung out w/ Grandma Karen for a few hours in the afternoon. I made the mistake of taking them both shopping saturday morning- Ava sceramed for the most part and Kylie was ripping clothes off the racks, knocking things off the shelves and now likes to stand up in her stroller, so she can turn around and harass Ava. We are spending most of our days "saving" Ava from the wrath of Kylie. If Ava is in the jump-a-roo, Kylie has discovered how fun it is to actually climb into the jumper while Ava is in it. Or, she goes up to Ava and lays on top of her, giving her "hugs" but then gets an eye poke or a "fish-hook" in at the same time. Any toy Ava has is immediately removed from her hands by Miss Kylie Jo. She likes to "brush" Ava's hair, (wacks her with the brush in the head), "give" her a bottle, (in the eye)or "read" her a book,(usually sitting on top of her). When Ava's teeth come in, I am predicting lots of tears. Other than that, both girls are doing good. Kylie has speech today, then a full week of therapy. The girls are both getting their flu shots at the end of the week. We are getting ready for Halloween, where both girls will be duckies. Hopefully the snow will stay away long enough for trick or treating. We don't totally have the walking thing down in tennies, so I can't imagine how it will go in boots. We are visiting a family on 7940 tonight and I am gearing up to be a single parent while Neil is gone hunting for a few weeks. Hope you all have a good week! More later.............

Friday, October 20, 2006 0:45 AM CDT

Hi all. We are on day 4 (fri) of the med wean and so far, so good. The first day she woke up at 4am and was going strong until 1pm. Probably a coincidence but I am hoping that is not an often occurance. The next night, I noticed a lot of twitching in her sleep, which makes me nervous but we will just have to wait and see. Our ped must have been doing some behind the sceans work because I have heard from Dr Frost's office 3x in the last 2 days. Apparently they were planning on doing an MRI of Kylie's liver/pancreas/kidneys/bladder, etc but Dr Frost wants to wait, as he doesn't want to sedate her when she is having so many fevers. Homecare is coming out next friday to draw her iron levels, so they are going to have them draw pancreatic enzymes and liver function tests as well. We have not been able to keep any iron in her, so I'm sure the level will come back low again. Dr Frost's office also wants us to consult another MD in the ID's practice but I feel like they are already covering everything they can. They were going to refer us to an Immunologist but with all of her immune studies coming back normal, I don't know what else they could do for us. We have to see Dr Frost next month, so we will go over all the labs then. The ped called while I was at work, so hopefully we can connect tomorrow. Kylie had OT this morning and they are specifically working on her eating skills- drinking from an open cup, using a spoon and working with her jaw/tongue because apparently when you have low tone, it's everywhere in your body, even your mouth. The therapist showed me a bunch of exercises to do with her and I felt like- crap- We can't even eat without having to "work" on therapy. Kylie seems to love all of her therapies but I am getting overwhelmed with all the "things" we have to do with her. There are so many little things to remember to do with her that I think I should carry around a little recipe box with items like 1. eat breakfast a. put foods in coner of mouth to promote tongue movement, b. hold chin up for sipping, c. demonsrate pursed lips when using straw, etc 2. sing songs a. pronunciate each word, b. use actions w/ words, c. sing in rhyming sing song voice, etc. You get the picture. =) Poor Ava- hopefully she'll just pick up things by osmosis. Huge thanks to Jody for babysitting the girls while we worked tonight! Also, thanks to my dad for helping Neil roof the house, (Neil's first roofing experience caused a need for a new ceiling in Ava's room, but we won't get into it). =) We are planning on meeting w/ another TS family on monday on 7940, who will be here from out-of-town. Hopefully going to 7940 won't jinx us! More later...........

Monday, October 16, 2006 1:45 PM CDT

Please keep the family of baby Luca in your prayers. He lost his battle with TS last night.

UPDATE: Tues 5pm: I am starting to freak out- I just got off the phone w/ Dr Frost's nurse and we are beginning the seizure med wean. He wants to take her off her zonegran, in case the med is the culprit for her fevers and labs that are messed up. I wasn't expecting to do a wean this soon and the last time she came off a seizure med, her seizures got out of control. So, please keep the prayers coming this won't end our blissful days of seizure control. If we do start to see seizures, they would not put her on this med again but would try something different. This is the med I would want her off first, as it is the one that can cause cognitive issues and they said can cause trouble with word finding, (maybe that is the real cause of her speech delay) =). He also wants to check some pancreatic enzymes, to see if things are functioning as they should. Some days I feel like her body is a ticking time bomb- we are just waiting for new tumors to show up in some organ and hoping like hell they won't. But, she is missing the gene the stops tumor formation, so it is likely this will happen at some point. Sigh....... Our visits w/ the ped went ok. She is going to talk w/ all of the doctors and come up with a plan. ENT wants to scope her sinuses and culture what ever is in there but we are going to see if we can fix things with out sedating her. We are also going to try and minimize antibiotics and lab draws. If all goes according to plan and she stays healthy, the plan is to take her port out in April! The dr also agrees she has a pit on her front tooth, so we will see a ped dentist in a few months. Aside from that, the girls are both doing good. Keep your fingers crossed for a good wean!

Hi all. What a dreary day outside today. Winter is not far away! Last week, we had Kylie's therapy evals and IFEP meeting. Things went pretty good and between the school district and home therapy, she will be getting between 7-8 hours of therapy a week, m-f. It seems like a steep schedule for a 2 year old but we are going to try and maximize therapy for 6 months, then re-eval and see if it was worth it. So, she will have speech 4x a week, PT 2x a week, OT 2-3x a week and the special ed techer will come out 1x a week. On a sad note, we will only be seeing Kylie's school OT 4x a year but hopefully Ky will have some great new skills to show her the next time we see her! Kylie will still be doing music class with my mom 1x a week through Jan and we are on some waiting lists for horseback therapy. Makes me tired even thinking about it! Her legs seem to be getting stronger the more we make her wear her AFOs, (yes Shannon- I'm making her wear them!)and she seems to be picking up some more sign language from the kids I am watching. We are still having problems with her vomitting from the iron and we are noticing it is starting to stain her teeth, no matter how much we bruch them. I also think she is having some TS issues with her teeth. These kids can get pits in the enamal of the tooth and I think we can see a few. I know they will fall out anyways but we are already worried about what her permanent teeth will look like, from all of the IV antibiotics she has had. This disease truely sucks. I guess we will be getting veneres (sp?) at the age of 8. Aside from all of our therapy, we have been super busy lately. I have been working at a flu clinic on my days off, which is a nice change in pace. I worked the clinic wed and sat, then worked a double at the hospital last night. It will be an early night for me tonight. On friday, the girls and I had a "girls night". Kylie and I went to Blockbuster to rent "Elmopalooza" and then walked to Caribu for our lattes, (or Oreo snowdrift in Kylie's case). We made a fire and had fun dancing to the Elmo tunes. Ava was full of giggles and loved dancing. We went to Uncle Ben's housewarming party on sat, then turned in early for the night. The girls slept at gram's last night and Neil and the buys went to the cabin for the day. I talked with the ENT's office today and apparently, they did not do an ear culture. Some members of this family apparently do not know the difference between doing a culture and cleaning the ear out. =) I will be attending all future doctor appointments. Still, we do not have a plan in place for her fevers and she was running them again on thurs/fri, although they were not real high. ENT is supposed to call back tomorrow. I called ID on friday and have not heard back from them, nor from Dr Frost's office from 2 weeks ago. Sigh........ We do have an appt w/ the ped tomorrow to go over Kylie's care coordination, so maybe some things will be straightened out then. I feel like I need a full time secretary to keep track of Kylie. As for Miss Ava, aka Miss Attitude, she is getting so big. She looks like a baby orangatang, with her fluffy mohawk hair. It will not grow on the sides but keeps getting higher and higher on top. Good thing winter calls for lots of hats. Her and Kylie are starting to play together, although Kylie steals all of her toys and climbs all over her. They love to give each other kisses- it is so cute! Well, I work thurs-sat this week, then plan on serving brunch at the Ronald McDonald House in Mpls on sunday. Special prayer requests for Katelyn B, who is back on 7940 after getting a VNS last week. We met this awesome girl and her mom back in feb and she gave me hope for Kylie's future. She is having a horrible time with her seizures lately, so we are praying they stop and she will feel better soon. Hope you all have a great week!

Wednesday, October 11, 2006 9:55 PM CDT

Good evening. I can't believe it's Wednesday already. We have been having a pretty good week. We took the girls to the apple orchard / pumpkin patch on saturday. Ava enjoyed her first apple and Kylie had fun climbing all over the pumpkins. We had a bonfire that night and Kylie had a blast playing with all of her friends- big thanks to the SBH junior girls powder puff team for the babysitting! The girls hung out w/ Grandma Karen on Sunday while I worked and Neil went to the cabin w/ my dad. Our week has been busy with therapy evals for Kylie. She was evaluated for speech and OT through our home therapy program. She was falling into the 16-19 mo range, about 4-6 months behind, where she has pretty much been plugging along at. Her hand/eye coordination is more at the 13-14 mo level, so Neil's dream of having a future golf pro may not be happening anytime soon. I keep telling him she has to walk before she can golf, but what do I know? =) I actually pulled out the old seizure helmet the other day- not for seizures but because she is such a clod. The more active and daring she gets, the more spills she has had, many ending w/ her cracking the back of her head on the floor. No tears though. She knows how to open the child safety gate leading to the upstairs, so we have to be careful, as she climbs on up. Her eye is looking better from her fall down the front steps. I am actually thinking we should be doing a full football helemt w/ a face mask. We have her IFEP meeting tomorrow w/ the school district, so we will be finding out what therapies we can increase. We are also looking into horseback riding therapy for her. It is supposed to help w/ balance, coordination and trunk stability, all of which we need work on. If anyone has had any experiences with this, please let me know how it worked for you. Yesterday, I had the girls to myself, so we went to lunch and then to walk the mall, (for exercise- I swear). Ava has been not feeling herself the past few days. She seems ok during the day but last night, she had a hard time breathing and was super crabby, as well as awake until 330 am. As soon as Neil slathered baby Vicks on her chest, she was out like a light. She is crying now, so I better go lend a hand. More later..........

Saturday, October 7, 2006 0:14 AM CDT

Hi all. Kylie had a better day today. We split her iron dose in 2 and gave them at different times of the day. She seemed to tolerate it just fine. I talked w/ our ped this morning and I just have to say- we just love this woman. We are going to go see her in a week and she is going to sit down and answer any questions or concerns we have, as well as speak with all of her doctors and find out where everyone is at with Kylie's care. She is going to check her stool for bleeding, which I don't think she has but will check just to be on the safe side. Ky will get her flu and pneumovax at the same time. She even scheduled our appointment for 11am, just so we have a longer slot to spend with her, even though it cuts into her lunch hour. I have yet to hear back from Dr Frost's office, (big suprise) =), but I know they will get in touch at some point. I got off work early tonight, so Kylie and I headed off to Muffin and Drew's house, where she got to snuggle with their mommy. We also got to catch up with our sweet girl Zoey and her mommy. For everything that girl has been through this past year, each time we see her we are simply amazed. She is doing fabulous. As for our sweet girl, I can't believe how lucky we were to be chosen as Kylie's parents. She is so different from every kid I've met, even more so than just the obvious. I'm really trying not to brag, ( =) ) but from her infectious smile, especially when she flashes those pearly whites, to her big belly laughs, (which Neil gets out of quite frequently), to the way she lays her head on you shoulder when you tell her to "give you love"- she simply melts me. Even though she is not much for conversation, her actions speak louder than words. I could be having the worst day in the world but just looking into those big, blue eyes- things don't seem so bad anymore. She is just our little slice of heaven, right here on earth. Ava and her are getting to be good buddies and I can't wait to see them together in a few years. Kylie already loves putting on my makeup and I can only imagine what our bathroom is going to look like with a house full of girls. Poor Neil. Tomorrow morning we are going to the pumpkin patch/apple orchard. Kylie loved it last year. I was hoping this year she would be running through the maze but maybe next year we will have two little girls running. We are having a bonfire tomorrow night and then we have a full week of work ahead of us. Hope you all enjoy this fabulous fall weekend!
PS Kylie sends a HUGE thank you to Miss Kleven's class for the awesome birthday cards. You guys are so kind and thoughtful. Kylie is looking forward to meeting you all soon!

Thursday, October 5, 2006 11:29 AM CDT

UPDATE: 1100pm: Neil brought Kylie to the ENT today and basically, they are stumped. He cultured her ear drainage and said he will leave it up to us if we want to proceed w/ the sedated CT and sinus cultures. Not what I wanted to hear. I want someone to make that decision for us. I obviously don't want to put her under sedation unless absolutely neccessary but I do want to get to the source of her problem. They tried to do a scan in the office, (didn't even know that was possible) but the little bugger wouldn't hold still, so she would have to be sedated. I think we will do this as a last resort. He thinks her body may just be rejecting her port but she hasn't shown any signs of infection w/ it. Our 2nd round of iron today resulted in more puking during sleep, so I have to call heme/onc tomorrow and see what our options are. We are waiting still to hear back from Dr Frost too. I am going to try and call her ped tomorrow and fill her in. I want to find out if Kylie's blood has ever been typed or if we can get in typed, in the event she would need to be transfused. If Neil or I could donate to her, we would definately go that route. I'm not sure how low her hgb can get but if she were an adult, she would be close. I'm just so frustrated with having to deal w/ so many doctors and so many different issues. When we were in-patient this winter, we were introduced to the Neurocutaneous Syndromes Clinic, which is involved w/ the TS Clinic Without Walls. They are supposed to help with coordination of care, so I am going to see if this might be an option for us. Maybe they could get all of her doctors on the same page and figure out what's going on with her. I just don't want to put all of this on the back burner and have her get really sick. She spent the evening with Grandma Karen tonight. They went to KinderMusik, where she "practiced" sweeping, then went out to eat, to the St Bernards volley-ball game and then visited Uncle Ben at his new pad. She loves her "grandma dates"! More later..

So here is the scoop with Miss Kylie. I talked with Dr Frost's office yesterday and they are very concerned about her labs, (I guess with everything always being so wrong, we are getting too laid back about things.) Hopefully I should know the game plan later today. With her hgb being low, they were concerned that maybe she is bleeding somewhere. We have not seen any signs of bleeding, so hopefully that is not the cause. They also talked about checking her liver and pancreas, to make sure they are working properly and that the meds haven't caused any damage. The nurses don't think it's the meds but they said they can't be certain, so they were going to go over it with Dr Frost. We also got her felbatol level back today and it was high. We have never had problems with it being high before and we have not increased the dose since early in the year, so then the question is if her body is having trouble metabolizing it. We are doing so awesome with seizure control but being on 5 seizure meds can't be good for the rest of her organs. So, I am hoping we are not already seeing the effects of so many meds. We have many years, (hopefully), ahead of us and damage this early on would not be good. Not to mention, we already have TS working against us, as tubors can form in any of her organs at any given time, causing damage in itself. We started her iron supplement yesterday and when I got her up from her nap, I found her laying in a pool of vomit. I'm guessing the iron is not sitting well in her tummy. Hopefully, this will get better. We got out date set for next week for her speech eval. We decided to go with the therapist that comes into to our home. We were on the waiting list at Children's and were notified yesterday they had a spot but this way, all of her therapies will be coming from the same company and when it's 20 below out, we can stay in our casa. =) Neil is taking her to see the ENT this afternoon, as I have a meeting. He is armed with a 2 page list of questions/instructions, so I don't get the answer "fine" when I asked how everything went. I'll update more later.

Monday, October 2, 2006 2:29 PM CDT

UPDATE: Kylie's hemetologist called tonight and told me she was concerned enough about Kylie's hgb, that she ran a complete iron study. Her iron level should be 50-100, yet Ky's is 13. She said it could be from being sick all the time, it could be from her meds or it could be something else. So, she called in a prescription for some kind of iron supplement, which we will start tomorrow. She will take it for a month, then have her levels checked again. If she is still low, they will then start to look into some other issues she could have going on, (as if we don't have enough). =) Kylie also took a header down the front steps tonight and is sporting a big, purple left eye. She hit the bone above her eye on the edge of the step. =( I'm just glad picture day was not this week!

What a beautiful day today! I love these warm, fall days. Ava is 8 months old today- I just can't believe how much time has flown by. She gets cuter and cuter every day. I have a feeling we are going to have a little devil on our hands when she turns 2. She has quite the personality. =)Kylie's fevers have subsided and for the most part, her labs came back ok. The blood cultures and the MRSA swab were negative. Her hemeglobin was low (8.9) and her wbc was elevated (13.7), which is most likely because of the ear infection. We are unsure why her hgb is low, as well as an iron study that was also done. Could be related to her meds but who knows. We see Dr Karlen (ENT) on thursday, so hopefully we will have a better idea what's going on with her sinuses. She has been in a pretty decent mood but continues to crawl around and lay her head down. I did get a call from our home therapy place, saying they have an opening for speech therapy. So, they will come out and do an eval in the next few weeks. Next week is her IFEP meeting with the school district, where we will go over her goals for the next 6 months and we will find out how much therapy they are able to provide. Aside from wanting her to talk more and walk, we are going to be working on using utensils, more sign language and hopefully potty training will start sometime in the new year. We went to a TS Alliance meeting on sunday, where we went over the events of this past year, as well as ones for next. We agreed we are outgrowing our dining space for Kylie's Hope Charity Golf Tourney, so we will be looking for a bigger facility for next year. Everyone was amazed at the group of people we have behind Kylie. Our family and friends are truely AMAZING and we are SO luckily to have you all walking this journey with us. We are looking forward to next years tourney. We also found out that the funding to almost every disease was cut by the government EXCEPT for tuberous sclerosis! This is because of all of the people contacting their senators, as well as for an awesome group of parents and others, who march on Capitol Hill in Washington, DC. These people actually meet with the senators and their staff and put faces to this nasty disease. They plan on going again in March and while they are gone, a small group of us here plan on going to the MN offices with Kylie and possibly a few other kids, so we can show them these beautiful children in person. I never thought I'd be a political person because quite frankly, my dad has bored me to death the past 27 years with all his political talk, but here I am. =) October looks to be a very busy month for us. We have every weekend filled, as well as most weekdays. Neil is going to be gone hunting for most of the first few weeks of November, so we will have LOTS of girl bonding. That brings us right into the holidays, which are fast approaching. We are going to be volunteering at the Ronald McDonald House in a few weeks, serving brunch to families who have sick kids on the hospital. We stayed at RMDH in Detroit, which was a life saver for us. We are looking into some other volunteer ideas as well. So many people did so much for us when we spent so much time in the hospital and we are looking for ways to give back. Off to enjoy this beautiful day!

Saturday, September 30, 2006 0:04 AM CDT

Good evening. I just got home from work, so I thought I'd do a quick update. We had a really cruddy week. The girls saw the ped on monday for an ear recheck and both past with flying colors. Wed, Kylie had to see the infectious disease doc, whom we just love. When we walked in, she told us she had mixed feeling about us being there. She said, "When I saw Kylie Jo on the list, I was torn. I didn't want her to be here but was excited to see her. I just love your family." =) awwwwwwwww. Anyways, she is concerned about the fevers. Apparently, we shouldn't have let it go this long but no one seemed too concerned and ENT quit returning my calls, so we just dealt w/ it. So, they swabbed Kylie's nose for MRSA, (PRAYING it comes back negative), did a chest xray, (which looked ok but they didn't get a great picture), looked in her ears, which looked good but one PE tube is starting to come out, and left a standing order with homecare for a slew of labs, including blood cultures if her temp when above 102. Yesterday, she went to KinderMusik w/ my mom. Afterwards, her right ear started to drain icky, bloody pus. This morning, she felt warm and her temp was 100.4. 2 hours later, it went to 103.6, so I called homecare and the ped, who ordered ears drops and an oral antibiotic. I gave Ky motrin and an hour later, her temp was 105. So, into the tub she went. She felt cooler after and then the homecare RN showed up to draw labs. Of course, her friggin port clotted off AGAIN. She got most of her labs drawn from her arm but we had to go into the heme/onc clinic for another round of TPA to get it declotted and to finish the labs/blood cultures. Neil had to come with, since I had to leave in the middle to go to work. Kylie was so hot today, you could feel the heat through her diaper. She cheeks were bright pink, her eyes crystal blue and her lips bright red. I know she felt like crap but she looked so cute. The homecare nurse said, "Oh my! What a beautiful child! She looks just like the Charmin baby," (whoever that is). She is pretty darn cute though. So, hopefully we will get all the labs back tomorrow morning. The same nurse is working in the morning, so she said she would call me with them. ID wants us to see Dr Karlen, (ENT) next week, in case it is another sinus infection. She thinks he will want to do surgery again and culture everything. To me, this does not seem like another sinus infection. I think there is something REALLY wrong and the doctors are not finding it. I wish they would all sit down together and compare notes, so we can see if this is something serious, if it is treatable or if this is just something we will always be dealing with. It is interesting that since the seizures have stopped, the fevers have started. Neuro says this is not seizure related, so I guess we will trust them for the time being. I wish Dr House was real, because I think she would be a great case story. A friend at work was "researching" Kylie's fevers and came up with a few interesting theories, many relating to the CF gene, which Kylie is a carrier of. TS in itself is such a complex, freaking crappy, weird disease, so who knows if it is contributing to all of this. All I know is I want the source of her fevers figured out or we are going to buy stock in the Motrin and Tylenol companies, since we seem to be spending a small fortune on restocking our supplies. That, and Dairy Queen Oreo Blizzards, which seems to be the only thing we can get her to eat. I'll post more tomorrow after we get some results back. Praying this will be something minor that can be fixed..........

Tuesday, September 26, 2006 10:52 PM CDT

**NEW PICS in photo album**
Good evening. We have been enjoying quiet days at home and trying to be outside as much as possible. Aside from the storm tonight, the past few days have been beautiful. We took the girls around the lake last night and they loved it. Kylie has been in an awesome mood the past few days. She keeps flashing us the 5 watt smile and giggling over everything. Ava is feeling crummy and has been crabby, so I guess they balance each other out. They both saw the ped yesterday for ear rechecks and all ears look good. Hopefully, they will both get over their colds soon. Kylie had therapy today and did pretty good. They have found that she focuses better and for longer periods if she sits in Ava's Bumbo chair. She can't get out of it and has to focus on what they are working on. =) She has started home PT through Caperneum (sp?), which she gets for an hour a week and next week, she will start OT through them. We are still lacking speech therapy, aside from the 30 min every other week she gets through the school district. I have a home speech place that said they will come to our house, so I just have to make the call. We are having Kylie's IFEP meeting with the school district in a few weeks, so we will see what they have to say. It's hard to imagine that this time next year, we will be working with a school itself, instead of the birth-3 program. She will start pre-school next September, just shy of her 3rd b-day. Scarey! Tomorrow, we see her infectious disease dr. Since she was discharged from the hospital in March, she has spiked a fever every 2 weeks. I have been pretty good about writing down the dates/temps but still have missed some. I'm just hoping they don't tell us it's seizure related, although I will take that if they say it's something worse. I think she has just caught every virus she comes in contact with. But, we will see. We have speech and PT on thursday, then a busy weekend. Have a great week!

Saturday, September 23, 2006 7:09 PM CDT

Good evening. We are home recovering from Kylie's Elmo birthday party. Our house was jam packed with chaos but we had a good time. Unfortunately, Kylie has been feeling pretty crummy. She has had a cold all week but started running a temp yesterday. She was 102.5 today. She has been really digging at her ears and rubbing her head, so we are thinking either her ear infection never cleared up or she has another sinus infection. We already have 2 dr appointments set for this week- mon w/ the ped for an ear recheck and wed w/ infectious disease for these unexplainable fever she has been running, (although I think there is a reason for this one). They are thinking maybe a problem w/ her port, maybe an underlying infection, maybe something else. Who knows. I was just wishing she would have been herself for her b-day party, (although it was nice celebrating this year w/o seizures). On wed, we went to McDonald's Playland for lunch, then after her afternoon nap, we headed to MOA. We went to Underwater World and the girls both loved it. Ava was talking to all the fish and Kylie was just in awe. Next, we got her pictures taken at Sadies. Kylie cooperated really and we got some great shots. We then went to Rainforest Cafe for dinner and had a good time. She went to her first KinderMusik class w/ grandma on thursday, then stayed over for a sleepover. We have been having lots of cuddle time w/ this icky weather. She still has been consistantly waking up every night, anywhere between 2-4am. Ava is a great sleeper though, so they even each other out. Ava said "Mama" for the first time yesterday (3x!). Very exciting,(for me=) although I'm sure she had no idea what she meant. We are staying in tonight, hanging out w/ my family. Continued prayers for Miss Caroline, our friend Jess, the Olson Family and for the family of baby Randon, who joined his big brother Reid and angels Drew and McKenna today (www.caringbridge.org/ky/reidmiller). Love and prayers to these families. Much love- The Gibbons Family

Wednesday, September 20, 2006 6:57 AM CDT

Happy birthday baby girl! Well, I guess I can't call you that anymore since you are now a big girl! You are 2 today! You continue to amaze me each and everyday. You've had such a hard journey from day one, yet you have this amazing attitude and are always full of smiles. Last year at this time, we spent your first birthday having constant seizures. We had to load you 3x to make them stop, yet they never did. This year, we are celebrating 6 1/2 months of seizure freedom and we are going to have a really fun day to celebrate! The day you were born was such an amazing day in my life. From the first moment you gazed into my eyes, you had my whole heart. I was so overjoyed about becoming a mommy and am so glad that you picked me. You have taught me more about patience, love and courage in the past 2 years than most people get to experience in a lifetime. My birthday wishes to you this year are that the seizure monster will continue to stay away and that you can stay out of the hospital, that you will learn to walk and to talk more and that you will continue to supply us with plenty of your addicting smiles. =) Happy birthday and I love you! Love Momma

Neil- Happy 3rd Anniversery! Thank you for sharing these last 3 years of marriage with me. There is no one else I would rather have by my side during all of our "adventures". You are truely an awesome daddy- your little girls adore you and their faces light up immediately when you walk through the door. We love you! Love Maria
PS You are fired from building any more fires. =)

Monday, September 18, 2006 8:41 AM CDT

Good morning. I just love these cold, rainy mornings. Definately good days for snuggles. Kylie must have thought so too, as she woke up at 4am. So far, I have done 4 loads of laundry, cleaned her room, did the dishes, cleaned the kitchen, read the paper and had a cup of tea. Maybe we should get up this early every day! Everyone is down for a nap, so I thought I'd update quick. Friday, I was in my good friend's wedding. What a beautiful day for it. Congrats Suz and Jas! What a fabulous day you had! The girls stayed overnight with my mom and it felt awesome to get a good night's sleep. I do have to say that if I should die before Neil, while my kids are young, will someone take over for me in the fashion department? Neil took the girls to my mom's and he dressed Kylie in a Vikings jersey (size 6, even though she is a 2T, but that's not the problem). My mom said the shirt reeked of cat urine, (the cat had gotten locked in a room all day where the shirt was on the floor). How disgusting! So, I asked him about it and he said, "I know it smelled funny. So I put perfume on it."!!!!!! Seriously, who did I marry? Saturday, my dad and Neil golfed in the Gibbon's golf tourney, while my mom and I took the girls garage saling, then out to lunch. Kylie was practicing walking in the restraunt and mosied over to a table, where an older lady and her elderly mother were having lunch. She had already finished eating but started doing the sign for eat. They gave her a bread stick- it was so cute! We got a lot of cleaning and organizing done this weekend. Last night, we had dinner at my grandparents for Kylie's b-day. They got her an Elmo doll that you can program personal info into. It says Kylie's name, Ava's, mom, daddy, the countdown to her birthday, etc. It is so cute and she just loves it. I can't believe my baby is going to be 2 in 2 days, nor that I will be married to my hubby for 3 years in 2 days. But, anymore dressing my kids in cat urine may make this marriage short lived. =) We are still plugging away with Kylie's walking. Some days her tone is much better that others. No idea why we have some real "floppy" days but we just go with it. I have been worried about Miss Ava's development as well, but I think the "nervous mommy syndrome" I developed after Kylie got sick is just in over drive. Ava has been rolling over since 4 1/2 months but just finally last night started rolling all over the living room, trying to get into the tv cabnet, the toy bucket, etc. She was also attempting to crawl, getting on her knees, etc. She was also sitting up quite a bit yesterday. So, we are going to practice hard this week. Kylie has therapy on tuesday, maybe wed, and thursday this week. We have big plans for her b-day on wed. If the weather permits, we are going to try and go to Central Park for a picnic w/ all the kids but I have a feeling we may have to stay indoors. Neil took the day off so late afternoon, we are heading to the Mall of America. I haven't brought her there since our last admission to the hospital in feb, (we went directly to the hospital from the mall, after having to load her there at least 4x). We seemed to always end up in the hospital after MOA, so crossing our fingers this time around will be different. We are taking her to Underwater World, then birthday pics at Sadie's, followed by dinner with my entire family at the Rainforest Cafe. My mom is going to take the girls home, so Neil and I can go to a movie for our anniversery. Hopefully, both kiddos will be healthy and in good moods. My mom has made a picture video that we will be posting on the website, so watch for it. Neither one of us is real computer savy, so hopefully we will get it on. That's all for now. Just a few prayer requests before I sign off:
1. For Miss Caroline, who will be having surgery on wed at Gillette. Prayers for no complications and a speedy recovery.
2. For Kiersten, our little friend from Missori with TS. We met her and her parents, Amy and Neil at the TS conference. Kiersten will be having her resection surgery on tueday, which will hopefully get rid of those nasty seizures. She has been having around 20 seizures a day. Her website is www.storiesoftsc.com/enterl.htm if you would like to offer her words of encouragement.
3. For Randon, a little boy who is very sick in KY. I have been following his site for awhile. His brother died a few years ago from the same illness and Randon has been in the PICU since he was born in July. Prayers that he will get strong enough for his much needed bone marrow transplant. His website is www.caringbridge.org/ky/reidmiller
4. For the parents out there intentionally making their children sick for attention. I have been hearing some horrible stories lately and can't imagine why anyone would want their child to be sick or why they would make up stories just to gain attention. When you really do have a sick child, you would give anything for your child to be healthy. Cherish your children's health and seek help for yourself.
Much love~ The Gibbons Family

Thursday, September 14, 2006 11:22 PM CDT

Good evening. First, our "exciting" news- last night, we "practiced" going trick or treating to Grandma Sue's. Kylie walked most of the way there, holding on to only one hand. A few times she let go for a few seconds but got scared and sat down. Toward the end of our walk, I got her to let go and she stood alone for close to 45 seconds! She then stumbled about 2 steps towards me- I know, peanuts to most but to us, this was simply fabulous! Sue and I were screaming and cheering for her, like she just won a 10K. =) I'm sure all the other neighbors shut their windows on us. She was pretty shaky and had her arms our for balance, but we will take it. She had home PT today and her therapist said she seems much stronger from just last thursday. Baby steps but we will keep pushing! The therapist gave us the inital eval, which put Kylie physically at a 9-11 mo level. Very disheartening to see on paper but it really wasn't news to us. I guess this is why our "fluffy" girl isn't in a hurry to do much besides lie around and smile- she doesn't want to show her big sister up! Kylie also got speech today and we worked on her picture cards. She is loving her new friends that come to dayare. She is trying to copy things Lili does and her buddy Jack had her belly laughing today- he would growl at her, then jump back- she would lean in and tweak his nose and they would both break down in the giggles. It was the cutest thing to see. =) I'm going to take the advice of a friend and savor the giggles and the grins and not get so caught up in the small stuff. Kylie is who she was meant to be and we thank God for her every second of the day. Thank you all for your continued prayers and support. We love you all! Much love- The Gibbons Family
PS Huge thank you to Cam for Kylie's "new", big red friend! You have some compition- I think she's in love!
PPS It's that time again- please email your congressmen and senators for more research dollars for TS. Rumor has it they are trying to cut funding and money for research is the only true hope my baby has for a cure! I have a generic form letter, so please email me if you would like a copy. riau2@aol.com I'll try and post a link, but my computer skills are less than stellar. =)

Tuesday, September 12, 2006 11:48 PM CDT

Good evening. Today we reached the huge milestone of 6 months seizure free! (Again, knocking LOUDLY on wood!) Praying so hard everyday that this continues. Unfortunately, Kylie has been crying and has been inconsolable for the last 2 hours. She went to sleep fine, then woke up around 10 and has been crying ever since. She did the same thing last night and we can't figure out what's wrong. She just keeps crying, "Momma!" over and over. I know most 2 year olds can't tell you what's wrong but these are the days I really wish we had more verbal skills going on. =) So, it looks like it may be a long night. The only thing I can guess is that her ear is still bothering her or her sinuses are starting to flare up.The girls and I did some fall cleaning today. Well, I cleaned, Ava cried and kylie took out everyhting I put away. That's probably why it took 6 hours to clean the living room, (and I'm not even exagerating). We had a near miss with Elmo's life today. Our shih tzu, Sadie, was rolling on top of Elmo, then put him in her mouth and was shaking him back and forth. Kylie had a pure look of terror on her face, and kept looking at me, like "Save him!". It was pretty funny. =) Kylie had therapy today but of course, would not demonstrate her stair walking skills. She would only crawl up them. We are going to Northdale to play tomorrow and her crush, Cam, is coming to visit. She has PT and speech on thursday. Well, it's now 12:15 and she's still crying. Gotta go save Neil-

Sunday, September 10, 2006 2:42 PM CDT

Hi all. The girls are feeling better, although Kylie has a nasty cough that has been waking her up at night. I think it is her sinuses draining and her snoring is out of control. We never had to start Ava on antibiotics and she is back to her usual, high maintanence self. =)Neil heard lots of giggling yesterday while he was getting Kylie's meds ready. He came into the other room and found Kylie walking up the stairs. Not crawling up but walking! She was holding onto the railing and walking up the steps. She was about half way up the staircase when he found her. Now, if we could just get her walking on the main land. =)She has also been signing more consistantly. Other than that, we have platued in the development department. We are going to have her evaluated at the therapy place in Hudson. If they can give us the hours we are looking for, it will be worth the drive. We got the discharge summary from Gillette PT and I had to laugh reading it. It said she has met all the goals they had set for her and they were stopping therapy, as "her little sister is starting to walk, which should help Kylie." Uh, Ava isn't even sitting up but walking would be great! This just reconfirms wanting to switch therapies. Thursday, Laura watched the girls so I could go to the salon. It was great getting caught up on the Hollywood scene, as well as on all my other magazines. =) That night, I brought the girls to Neil's softball game. They were crabby from their ears and needed to get out of the house. It was a little hard watching the other kids half her age running all over the place but hoping by next summer, both of my girls will be running with them. I worked the night shift on friday, so my mom slept over at our house with the girls. Neil still has his sleep disorder going on- the one where no one else exists in the world exept him. =) The house could be burning down around him and he wouldn't wake up. Last night, Auntie Kari and Lindsey came over to babysit while Neil went to the Twins game and I went out to a bachlorette party for my good friend Suzie. Today has been a lazy day. I have to work at 7pm, so the girls will hang out w/ their daddy. They are definately "daddy's girls", especially Kylie. Her face just lights up whenever he comes home. We have a busy week of therapy and I am in a wedding on friday. I'll update more this week. Enjoy the drizzly day!

Wednesday, September 6, 2006 1:47 PM CDT

Sigh.............And our battle w/ the ear infections begins again. Except this time, it's both girls. We went for their 6mo/2yr check-ups today and they both have ear infections. Kylie was started on cipro ear drops but we are going to see if Ava will get over it on her own. She doesn't have a fever and isn't too crabby, so we feel ok about seeing how things go. We have a prescription just in case. Kylie did have a fever and is crabby- we are just crossing our fingers her sinuses don't start flaring up. So far, everything seems to be draining out ok. Our ped is concerned about Kylie's frequent fevers and wants us to go back to the infectious disease dr. She has been spiking temps about every 2 weeks, anywhere from 100-105, w/o a known cause. So, we will see. She also refered us to a place in Hudson for therapy. Kind of a drive but we aren't having much luck around here and she said they are awesome. I'm going to try and coordinate it for fridays, so Neil can take her. His work schedule is changing and he is starting sun-thurs. We won't see each other all that much but it will work out better for both of our schedules. Here are the girls' stats from the dr:
Ava (7mo) ht: 28in, wt: 20 lb, 10oz, head: 18in =all >95th percentile. =) The ped said not to call her fat- she's just fluffy. =) Kylie: (almost 2!) ht: 36in, wt: 27lb, 4oz, head: 19 3/4in= >95th or ht/head and 60thor wt. They both got shots today and are crabby, so it is going to be a LONG day. Please continue to keep the Olson family in your prayers. It has been 2 long months since they got to snuggle w/ their Muffin. We miss you Muffin! Fly high!

Monday, September 4, 2006 11:05 PM CDT

Good evening. We had a busy weekend, as usual. On friday, my mom and I took the girls shopping for fall clothes. She bought Kylie a new pair of AFO shoes from Stride Rite- her feet have grown so much the last few months. We got halloween costumes for the girls- cute, fluffy ducky costumes. They look adorable and can't wait of the big day! The girls slept over at my parents' on friday night. I worked the night shift and Neil was helping my dad sheet-rock the attic. My mom took them shopping sat morning, while I slept and Neil got some yard work done. Saturday afternoon, we went to my cousin's wedding and got caught up w/ the family. We haven't seen my dad's family much since Grandma Ueland died, so it was great to see everyone. Grandma's presence was so greatly missed- she lived for family get-togethers. I still can't believe she never got to meet Ava- she missed her by 24 days. Kylie was so cute at the wedding- helping blow bubbles, crawling up to the wedding party's table, "chatting" w/ everyone. We left early, as soon as the strobe lights came on- a disadvantage of seizures, that's for sure! That night, we got the girls down early and Neil and I got some cleaning done and put away all their summer clothes, (a far cry from the sat nights out we used to have) =. Sunday, we spent the rainy day inside, playing. I got a chance to go out w/ my girlfriends last night. We had dinner out, went to the fair and had some drinks. I didn't get home until 2am(!) and Miss Kylie was still awake. She got up at 1am and the 3 am car ride didn't even put her to sleep. She was up until 530am and around 830am this morning, had a violent coughing attack, throwing up all over our bed. Neil got up w/ her, so I could catch a few more hours of sleep. Ava and Kylie both came down w/ colds over the weekend, although Kylie's seems much worse and she has been running a fever w/ it. Hoping it doesn't settle in her sinuses. She has been doing great in that area for a while now. She and Ava both have their check-ups w/ their ped on wed, so we will see how she does. Thursday, Kylie is getting her port flushed by homecare and she has her first PT session w/ our new home therapist. I am still trying to get her speech therapy figured out. Today, my mom and I took Kylie shopping again, (I know- there is therapy for this) and we got Ava a big-girl carseat. When we got home, Neil and Ava were no-where to be found. I finally found them- Ava was snuggled in her crib and Neil was sprawled out on the floor, next to the crib. They were both sleeping soundly- it was pretty cute. Kylie was up again late tonight but finally fell asleep. I'm going to turn in, just in case we have another late night. Hope you all had a wonderful weekend. Good luck to everyone going back to school tomorrow, especially Auntie Kari. We love you! Much love- The Gibbons Family

Thursday, August 31, 2006 11:35 PM CDT

***NEW PICTURES***
Good evening. I thought I'd do a quick update before bed. My mom, Kristi and I took the girls to the fair tonight. Ava had a blast taking in all the sights and sounds, charming the vendors w/ her babbles and smiles and we heard the comment SEVERAL times, "Look at that baby's fat cheeks!" Kylie was sort of crabby and was pretty sleepy but did manage to wolf down a plate of ravioli. As you can see in the picture, her cheeks are starting to fill out too. She has been eating like a horse lately and absolutely loves her fruits and veggies, especially blueberries and peas. We are really trying to increase her therapy. She had a home eval today for PT and they are going to start coming out 1x a week. We are trying so hard to get her to walk but she really needs to get more sturdy. She still has the "Elvis sway". 20 days until her 2nd birthday and still not walking. I'm starting to get freaked out about her overall development. She is just not on track w/ kids her age. She tries so hard and I can see the determination in her eyes, yet we have so far to go. I realize we are so blessed to be having a break from these God-awful seizures but I am so worried about her being on 5 seizure meds. Who knows what they are doing to her development and who knows what all those damn seizures did to her brain. I suppose the 26 brain tubors aren't helping either. =) I just see such a long, long road ahead, full of struggles for her and some days I just feel like, "Urrrrrrrrrrhhhhhhhhh". She is learning new things but we have found she needs lots of repitition to do them. She is now blowing kisses, even at appropriate times and on her own, not when we ask her to do it. She sort of has the "How old are you?" down. At times she still shows one finger, but lately 2 fingers have been poping up, (granted, they are her thumb and index finger, so it looks like she is pointing a gun at you.) =) And on a typical developmental front, the terrible twos are setting in- pulling the cats hair out, her sister's hair out, unloading the dishwasher, (as I'm loading it), getting into everything, having random tantrums when she doesn't get her way, dumping out the dog water, dumping out my pop (all over the cat), feeing the dogs her dinner, taking her diaper off (and her sister's), coloring on the floor, you name it. Yet, she does it all with an impish grin and I love it. She has spent a lot of time studying the dogs and now, when she is excited about something, she starts panting like a dog. Ava likes to growl, so I feel like I'm raising a pack of wolves. Well, Ava is screaming bloody murder so I should quit for the night. I'm don't mean to sound like I'm complaining tonight, because I do realize how truely lucky we are to have Kylie in our lives and she gives us more joy than I can even begin to describe. For her, I wish that some days would be easy ones for her, that she wouldn't have to take 5 meds 4x a day or sit through one therapy after the next or have to crawl after the other kids instead of walk. By the time she catches up with the others, they are taking off to do something else and she gets left behind. Hoping and praying she won't always be "the last one "it"". Much Love- The Gibbons Family

Tuesday, August 29, 2006 5:52 AM CDT

Good morning. We have been so busy lately that it has been hard to find time to update. Last thursday, Neil and I took the girls to the fair. When we first got there, Kylie's face was priceless- huge grin, taking everything in, giggling at every new sight. It was well worth seeing her face, even what was later to come.=) She enjoyed deep fried pickles and some fruit pizza before we got caught in the huge storm. We were completely soaking wet, couldn't use our umbrellas because of the lightning but were laughing so hard about what bad parents we were to have our babies out in the rain. Kylie stayed dry in the stroller, (it had a rain cover) but Ava was in the front pack, so she got a little wet, (ok- drenched). Thanks to Grandma Sue for saving the day and picking us up. Friday, Neil and I both worked, so the girls spent the evening w/ Grandma Karen. I didn't get there to pick them up until after midnight, so Kylie spent the night, (Ava was still awake!). She went w/ Grandma to the fair in the morning, while Av & I slept in. I worked sat night shift, so Grandma slept over. Sunday, Neil and Kylie baked a birthday cake for Angel Drew, (who buys Roundy's cake mix?!) and when I woke up, we released balloons w/ notes attached to our angel babies, Drew and Muffin. We then sang happy birthday and blew out candles for Drew. We were really hoping to make it to the balloon launch, but I had to be back at work at 7pm. Yesterday, we had 4 other kiddos here to play all day. Both Kylie and Ava were thrilled w/ all their new friends. Neil took Ky to therapy yesterday and they had to add attachments to her AFOs. Her feet have grown almost 2 sizes in the last few months. I took Ava to get her 6mo pictures yesterday. Let's just say she's our little chudette! I did almost knock out the photographer. She couldn't understand why Ava couldn't stand for the pics. Hello! She's only 6 mo! I'm still trying to get my other kid to do it! J/k She seemed seriously disturbed by it. We will not be going back there. Kylie has speech this week and is going to be evaluated for PT from a new therapy place. They are actually coming to our home to check her out, I talked to our new insurance care coordinator yesterday and found out there is no limit to the amount of therapy Kylie can get! So, we are really going to be pushing for more. I also found out that for each person on the plan, there is a $1 million lifetime cap. Kylie has used 26f her lifetime cap, so we are figuring she will run out around age 6, (unless things calm down by then).So, I guess we just cross our fingers and hope for the best. Kylie continues to do well health-wise. She has to get her port flushed this week, so hoping we have no issues with that. She has had trouble w/ fevers after the last few flushes, so we will see. That's all for now. Have a great week! Much love- The Gibbons Family

Wednesday, August 23, 2006 4:54 PM CDT

Hi all. The final counts are in for the golf tourney and we raised over $18,000 for TS research! That is over $5000 more than last year! Way to go everyone! We SO appreciate everyone's generosity! Kylie has been doing pretty good. She has been a little crabby today but over all ok. She the eye dr yesterday and although she is still a bit farsighted, she hasn't gotten any worse from 6 mo ago. He said kids usually get worse until age 5 and need correction, but so far that hasn't happened in Kylie's case. Thank God, because I can't imagine getting her to keep glasses on her face. The dr visit in itself was a disaster. Ava was due for a nap and screamed the entire time we were there. I wass trying to calm her down and she would fall asleep in my arms but whenever I put her down, she would wake up and scream. Kylie would start to cry when Ava would but when I was holding Ava, Kylie was into everything- turning their computer off, banging on the keyboard, hitting buttons on the big eye machine. A nurse finally saved me and took Ava into another room so I could hold Kylie. I made the next appt for the 1st one of the day and Neil is taking her. After the dr, we went and had lunch w/ my grandparents, then headed off to visit our friend Zoey and family. They are having a garage sale this week, so we got a sneak prevue and cleaned then out of toys. Kylie even got a big girl bed from Zoey, a mini daybed that we set up right next to our bed. She is still close enough that I will be able to tell (hopefully!) if she is having a seizure. Last night was the best night sleep I have had in months! No one kicking me in the back, pulling my hair, poking my eyes- it was great! Grandma came over last night and we went for a walk. Today, our friend Lili came over to play, then Kylie had therapy at Gillette. Auntie Kari took her- thank you! Tomorrow, we plan on going to the fair, then Neil and I work this weekend so the girls will be hanging out w/ Grandma. We are working on trying to increase the amount of therapy she is getting. We have a home therapy place coming out next week for a PT eval and are on the waiting lists for ot and speech. That's all for now. Have a great one!

Sunday, August 20, 2006 12:50 AM CDT

All I can say is - WOW! What an awesome event we had yesterday. The 2nd Annual Kylie's Hope Charity Golf Tournament was a great success. We don't have the final numbers in yet but our last tally showed over $16,000 was raised for TS Research. The tourney is called Kylie's Hope because it truely is our HOPE that one day there will be a cure for this awful disease. A huge thank you to all of our family and friends who helped out yesterday, to our neighbor, "Grandma" Sue, who watched Ava all day, to Kari, Jenny, Missy and the rest of the TS Alliance group, to Chris Hawkey, for the awesome performance and for being the honorary co-chair, to KFAN and the rest of the donors- what awesome prizes, to Kelly Gibbons and family- words can not say enough, to Matt Koalska of the NY Islanders- thanks for raising even more money!, to Joe Sensors and staff- you guys did an awesome job!- to Como Park Golf Course- thanks again for letting us hold our event w/ you, and to all of you who bought raffel tickets and played in the event- we couldn't have done it w/o you! We really lucked out w/ beautiful weather and had a great time. Kylie's fevers have been staying away and she seems almost back to herself. We plan on hanging out w/ Uncle Ben today, watching the Twins game and just hanging low. We are exhausted after yesterday! More later and have a great day! Much love- The Gibbons Family

Friday, August 18, 2006 1:25 AM CDT

Kylie is still running temps and today her face seemed kind of puffy. Her pupils were a bit dilated all day but no obvious signs of seizures. She napped for 4 hours this afternoon and woke up grumpy. She had speech w/ Ruth today and we worked on her picture cards. She has to hand us a card for what she wants. For example, we had her give us a picture of cheerios and then we would actually give her cheerios. I was floored when she started signing "more" for more cheerios. She hasn't done that for a long time. Grandma Sue taught her to flash one finger when you ask her how old she is. Trouble is, she will be 2 next month, so hopefully it won't take until she is 3 to learn 2! Ava is working hard to crawl. She can get up on her knees & pushes up on her arms but can't quite get both concepts at the same time. I think it may be her rather large tummy weighing her down! My mom was putting together posters tonight for the golf tourney and I am amazed how far Kylie has came in the last year. She was a little butterball a year ago and now she is so lean and lanky. Looking at all of her hospital pictures made me a little sad. Half of the pictures we have over the last year are from the hospital. But she does look pretty cute w/ her EEG wires on. I am going to turn in for the night. We are having a playdate tomorrow w/ Mary and her mom, so hoping Kylie will be a little more perky. As for the golf tourney, check-in starts at noon saturday at Como Park Golf Course and tee-off is at 1pm. We are telling everyone who plans on attending the dinner to be at Joe Sensors a little before 6pm. Chris Hawkey's band will be playing during dinner, then the Vikings will be on, so they have to quit playing a little early. The raffel will be sometime after dinner. We had planned on starting it at 7pm, but it maybe a little later. We have added a few prizes the past few days- (2) sets of Vikings tickets, tickets for the Bonnie Raitt (sp) concert & tickets for the Bodeens concerts at the MN ST Fair, an autographed Joe Mauer baseball and a 1-night stay at the new waterpark hotel (can't think of the name), w/ 4 park passes. Since we have everything printed up already, those prizes will be put in the general drawing. The other big prizes all have individual drawings. We have already sold almost half of the raffel tickets, so we need to see tomorrow about getting more made. Ok, have a great friday! Love The Gibbons Family

Wednesday, August 16, 2006 0:53 AM CDT

UPDATE: Wed 11pm: I am cursing myself for writing about how great Kylie is doing. She woke up at 430am this morning, burning up. I didn't have the light on, nor my glasses but I could swear she was having a seizure. Not her typical, but her eyes looked like they were deviating. By the time I could look at her in the light, she looked ok, just hot. Could be paranoid thinking on my part, but I'm not sure. Her temp was 103,5 and of course, no tylenol in the house. It was about 102 during the day, then at 4pm, went to 105.1. Still, no seizures that we saw and she was fine at bedtime. I am questioning if she has a tubor in the area that controls body tempature and that each time she spikes these high fevers, she is actually having a seizure in that area of the brain. Could be paranoid thinking on my part, but she does tend to spike fevers off and on. We'll see how she does over the next few days. Hoping she can still attend the golf tourney, since she is the featured guest. =)

Good evening. I am finding less and less time to update lately, which is a good thing, since we are enjoying wonderful seizure free days! On saturday, we hit the 5 month mark of Kylie's last seizure! We are so blessed and we are enjoying watching her blossom before our eyes. Even though she is still not walking independently, that girl is all over the place and into everything. He new favorite thing is to open the broiler part of the stove and wipe grease all over- not my favorite activity by any means! She worked with Angi at home today for OT and Angi had her belly laughing- so fun to watch. Her speech is still slowly coming along. Everything is, "Mom! What dis? What dat?" A few other words are thrown in here and there and she communicates very well by pointing and gestures. When she wants a snack, she has been walking over to her highchair (via furniture and the wall) and pointing up at it and going "Um, um". When you put her in it, she gets super happy and excited. She is getting better at identifying body parts and now knows eyes, nose, hair, belly, teeth and toes- her favorite. When ever someone leaves, we get ready to go somewhere, or we finish a book or shut the door, she waves bye-bye. We have decided that we are most likely going to leave Gillette for therapy. Currently, she is only getting speech 1x a week for a half hour. It's a huge ordeal to get there for only 30 minutes. We are going to have a meeting w/ the school district to see if we can increase any of the therapies she is currently getting- PT 1xmo, OT 1x a week, speech 2x mo, and the school teacher 2x a month. If we can't increase therapy or only by a little bit, we have found a therapy place that will come to our home for PT/OT but we will have to go to their clinic for speech. We ar hoping to maximize all of her therapies. She is doing so awesome and learning so much at this time, so we want to take advantage of every minute. Her seizures could come back w/ a vengence at anytime, setting her back again. But, we will continue praying we won't have to face that day again.Ironically, we haven't even been dealing with any sinus issues lately. We cancelled our appt w/ the U of MN ENT, deciding that we will go back if she gets sick again. We had a very busy weekend. I worked a double on friday night, so the girls hung out with their daddy. I was exhausted on sat, so I cat napped on/off during the day. We had dinner at my parents' house sat night, to celebrate Uncle Ben's 21st b-day- (We love you Uncle Ben! Love Kylie & Ava) We went out for his b-day that night and hung out at my mom's on sunday. Yesterday, we stayed close to home, as we did today, since I worked again. Miss Ava is getting to be such a big girl. If her sister gets too close, she grabs a big chunck of her hair and gives a good yank. She is also into pinching your face and she talks up a storm. She is going to spend the day w/ Grandma Sue on sat, during the golf during, then will join everyone for dinner. Just a few more days! Thank you to everyone who has been buying raffel tickets- hopefully we will surpass our total from last year. It's supposed to be a beautiful day on sat. Hope to see many of you there! In the morning, the girls and I are heading out early for WI. We are going to visit Zoey and pick up some stuff they have outgrown. The most exciting item will be a big girl bed for Kylie, which we will put right next to our bed. We will then have lunch w/ my girls and their friends. I have a 7940 mom's mtg tomorrow night. On a side note, our little friend Carl, whom we met last summer, is back on 7940. They think he is having seizures, so we are sending up big prayers they stop and they get to go home soon. That's all for now- Have a great week! Love The Gibbons Family

Wednesday, August 9, 2006 0:42 AM CDT

Good evening. We have had a busy weeek. Last thursday, we walked w/ Drew's Crew at the Epilepsy walk. The walk itself raised over $70,000 and Drew's (&McKenna's) team won the team spirit award! It was a great turnout and athough we were missing 2 special angels, I know they were with us in spirit. Dr Frost, his wife and a bunch of Kylie's 7940 nurses were there. It was so nice for them to see the "real" Kylie, when she is not all drugged out and seizing her butt off. They got to see her as we see her- smilely, giggly and full of charm. (By the way, my girl has her smile back and it has been FABULOUS to see.) =) Kylie spent a lot of time cuddling w/ McKenna's dad. She just loves him, maybe even as much as she loves her Elmo. =) I had to work on friday, so my mom took them to my cousin's b-day party. She also took them for the day on sat, so I could get some serious cleaning done. Of course, the Lifetime movies sort of took over my day, but I did get some cleaning done in between. I have sort of been in a funk for the last week, really tired and not wanting to do much. I think a lot of it has to do w/ my sleep schedule still being messed up but we are working on it. Sunday, Neil and I took the girls to the mall w/ her auntie Kari and Uncle's Ben and Andy, and Laura. We went out to dinner and got a chance to catch up. We came back to our house for family game night and my mom joined us. Yesterday, Neil and I did some yard work, took the girls for a walk and just hung out. I took Ava to the U of MN this morning for a child development study, the the girls and I met my friend and her daughter for lunch. We later hooked up w/ a few more friends and headed out to the MN Zoo. Kylie was walking along my the shark tank, holding on the the ledge and pointing to the fish. There was a teenage couple watching the fish and Kylie kept grinning at them, then would point to the tank and say "fffffish, fffffffish". She then had to check out the Polo logo on the kid's pants, as well as his hat. It was so cute but we have to watch her close- she would leave w/ anyone w/o a fuss. We went to my parents for dinner, gave Grandpa a lecture on profanity near little ears, (and if either of my girls say a naughty word, blame Gramps). They both went to bed a little early tonight, so it will probably be an early morning. I have been a little bummed about Kylie refusing to walk. She has been so close but still not yet. That should be the least of my worries though. She has been doing positivley awesome lately (know on wood) and on sat, it will be 5 mo since her last seizure (knock on wood again!) It almost seems like a surreal life we are living but I am loving it. Our biggest problem right now is the stubborn streak she is getting. She has been refusing to take her meds and will hold them in her mouth forever! She takes them 4x a day, so it gets a little frustrating. So, we have resorted to chocolate syrup chasers, as well as ice cream. I guess since she does not have any control over her young life and has been put through so many things, she has found the one thing she can control and man, does she do it well! Neil is going to take her to speech in the morning and then we are having her privately evaluated for speech on friday by a family friend. So many skills to work on, so I guess we'll keep plugging along. Baby steps.......

Our 2nd Annual Kylie's Hope Charity Golf Tournament is right around the corner on Saturday, August 19, at Como Park Golf Course. Registration begins at noon and tee-off will be at 1pm. Dinner will follow at Joe Sensors in Roseville. The raffel will be held following dinner. Chris Hawkey, a DJ from KFAN and a huge supporter of the TS Alliance, is co-chairing the event. We have many fabulous prizes available for the raffel. A few notable ones are the following: $500 gift card from Warner Stellian, Twins tickets, Saints tickets, autographed Wild Hockey Jersey & hockey sticks, 1 mo membership to Curves, autographed Vikings license plate cover, Renissance Fair tickets, and an evening out for dinner, a movie and babysitting from Neil and I, (and yes Kelly, this would include all 5 kids =). There are many more prizes and we are currently selling raffel tickets. So, if you are unable to attend this fabulous event, you can email me if you would like to purchase tickets. Tickets are $5 each and prize winners will be notified. We are very excited for the tourney. All of the proceeds will benefit the Tuberous Sclerosis Alliance. We are raising money to help find a cure for
(T)his (S)ucks disease. 1 in 6,000 children are born with this god-awful disease. If a parent has the disease, then their child will have a 50hance of having the disease. You aren't a carrier of the disease- you either have it or you don't. In most cases, such as ours, neither parent has the disease. The child just has a spontaneous mutation of the TS gene in utero and in turn, is born w/ TS. It was nothing I did wrong while pregnant, nothing that could've been prevented, just a crappy deal of the cards. We have a gorgeous, happy, curly haired, blue-eyed girl, who is the absolute love of our lives. We would do anything and everything in our power to help a cure be found. So, I guess by having this tournament, this is our way to contribute. Kylie is lacking the gene to suppress tumor formation. A person with TS can form tumors in any of their organs- their brain, heart, kidneys, eyes, lungs, skin, etc. TS can cause learning delays, mental retardation, autism, behavior disorders, epilepsy, kidney failure, respitory failure and so on. Paints such a beautiful picture, doesn't it? In her case, the result is 26 tubors (hard calcifications similar to tumors) in her pretty little head. She has had hundreds and hundreds of seizures in her short little life from these stupid tubors. She has multiple white spots all over her body, a white patch of hair, low muscle tone in her legs and more infections in her body than I care to count. She recieves PT, OT and speech, has a portacath implanted in her chest for IV meds/multiple lab draws, takes 5 seizure meds a day, has spent around 75 days in the hospital since her diagnosis last feb, has had 3 sinus surgeries, 4 PICC lines and so many IVs and blood draws that I have lost count. Yet, she does it all with a smile. She loves all of her doctors & her nurses, even the EEG techs that strap her down as they apply the EEG wires. Currently, she has not had a seizure in almost 5 months (Yeah! Go Kylie!) -knock on wood- and the day she takes her first unassisted steps will be the happiest day of my life. I don't know if her sweet dispostion is because of all the adversity she has had to face in her short life or because this is just who she was meant to be, but I will do anything to keep her, and all the other kids w/ TS, from suffering. My dream is for no other mother to hear the words, "Your baby has tuberous sclerosis." The money we raise will be directed towards research to find a cure. We have learned that when they find a cure for TS, they will find a cure for cancer as well. How many of you have had cancer touch your lives? It killed 2 of my grandparents and an aunt, as well as touched many surviors in my life. So, if you want to join our cause, please email me and let me know. We can sell raffel tickets up until the day of the tourney but can only accept dinner reservations and golf team regisrations until this friday (8/4). Thank you to all of the people who have been volunteering their time to help us put on the tourney, especially Kelly Gibbons, Sue Salmon and my hubby, Neil. We truely appreciate it! Also, in advance, a huge thanks to all my girls for helping out at the golf course, as well as a thanks to Kiley Jo and her girls, (can you believe their are 2 Kylie/Kiley Jo Gibbons?) Thanks to everyone who signed up to play and to everyone who donanted prizes. We are hoping to exceed our total of $13000 from last year and I think we may just do it!

Wednesday, August 2, 2006 8:16 PM CDT

Good evening. Our 2nd Annual Kylie's Hope Charity Golf Tournament is right around the corner on Saturday, August 19, at Como Park Golf Course. Registration begins at noon and tee-off will be at 1pm. Dinner will follow at Joe Sensors in Roseville. The raffel will be held following dinner. Chris Hawkey, a DJ from KFAN and a huge supporter of the TS Alliance, is co-chairing the event. We have many fabulous prizes available for the raffel. A few notable ones are the following: $500 gift card from Warner Stellian, Twins tickets, Saints tickets, autographed Wild Hockey Jersey & hockey sticks, 1 mo membership to Curves, autographed Vikings license plate cover, Renissance Fair tickets, and an evening out for dinner, a movie and babysitting from Neil and I, (and yes Kelly, this would include all 5 kids =). There are many more prizes and we are currently selling raffel tickets. So, if you are unable to attend this fabulous event, you can email me if you would like to purchase tickets. Tickets are $5 each and prize winners will be notified. We are very excited for the tourney. All of the proceeds will benefit the Tuberous Sclerosis Alliance. We are raising money to help find a cure for
(T)his (S)ucks disease. 1 in 6,000 children are born with this god-awful disease. If a parent has the disease, then their child will have a 50% chance of having the disease. You aren't a carrier of the disease- you either have it or you don't. In most cases, such as ours, neither parent has the disease. The child just has a spontaneous mutation of the TS gene in utero and in turn, is born w/ TS. It was nothing I did wrong while pregnant, nothing that could've been prevented, just a crappy deal of the cards. We have a gorgeous, happy, curly haired, blue-eyed girl, who is the absolute love of our lives. We would do anything and everything in our power to help a cure be found. So, I guess by having this tournament, this is our way to contribute. Kylie is lacking the gene to suppress tumor formation. A person with TS can form tumors in any of their organs- their brain, heart, kidneys, eyes, lungs, skin, etc. TS can cause learning delays, mental retardation, autism, behavior disorders, epilepsy, kidney failure, respitory failure and so on. Paints such a beautiful picture, doesn't it? In her case, the result is 26 tubors (hard calcifications similar to tumors) in her pretty little head. She has had hundreds and hundreds of seizures in her short little life from these stupid tubors. She has multiple white spots all over her body, a white patch of hair, low muscle tone in her legs and more infections in her body than I care to count. She recieves PT, OT and speech, has a portacath implanted in her chest for IV meds/multiple lab draws, takes 5 seizure meds a day, has spent around 75 days in the hospital since her diagnosis last feb, has had 3 sinus surgeries, 4 PICC lines and so many IVs and blood draws that I have lost count. Yet, she does it all with a smile. She loves all of her doctors & her nurses, even the EEG techs that strap her down as they apply the EEG wires. Currently, she has not had a seizure in almost 5 months (Yeah! Go Kylie!) -knock on wood- and the day she takes her first unassisted steps will be the happiest day of my life. I don't know if her sweet dispostion is because of all the adversity she has had to face in her short life or because this is just who she was meant to be, but I will do anything to keep her, and all the other kids w/ TS, from suffering. My dream is for no other mother to hear the words, "Your baby has tuberous sclerosis." The money we raise will be directed towards research to find a cure. We have learned that when they find a cure for TS, they will find a cure for cancer as well. How many of you have had cancer touch your lives? It killed 2 of my grandparents and an aunt, as well as touched many surviors in my life. So, if you want to join our cause, please email me and let me know. We can sell raffel tickets up until the day of the tourney but can only accept dinner reservations and golf team regisrations until this friday (8/4). Thank you to all of the people who have been volunteering their time to help us put on the tourney, especially Kelly Gibbons, Sue Salmon and my hubby, Neil. We truely appreciate it! Also, in advance, a huge thanks to all my girls for helping out at the golf course, as well as a thanks to Kiley Jo and her girls, (can you believe their are 2 Kylie/Kiley Jo Gibbons?) Thanks to everyone who signed up to play and to everyone who donanted prizes. We are hoping to exceed our total of $13000 from last year and I think we may just do it!
As for tomorrow, we will be walking around Lake Phalen at the Stroll for Epilepsy. We will be walking w/ Drew's Crew, in honor of our favorite angels, Drew and Muffin. I think we will be able to bring Kylie, as it is not supposed to be as hot as it has been lately. The walk starts at 6pm, so if you would like to join us, we would love it. We are meeting at the Phalen Pavillion just before 6pm. This walk honors all of the kids we have met that suffer epilepsy and we look forward to seeing all the friends we have met on our journey. My cell # is 651-329-0427 if you plan on meeting us but can't find us. Well, I should go get some work done. Kylie is on a "date" w/ her favorite Grandma Karen. They hit up the mall, had dinner out, then were off to the summer party at the neighborhood rec center. Rumor has it the date may include a sleepover, so I am going to take advantage and try to get Ava's room done. Sharing a room between the girls has not been going so well, so Ava is moving across the hall from us. Our little cutie is 6 months old today and getting such a personality- demanding, impatient, yet sweet and cuddly at the same time. I have been getting a little peak at her teenage years and I'm a bit frightened! Ok, I'm done babbling. More later......

Sunday, July 30, 2006 10:08 PM CDT

Good evening. What a hot weekend! Hoping you all stayed cool. Unfortunately, Kylie did not fair well with the heat. We went to a lake house yesterday but was so hot, we left early. Apparently, we didn't leave early enough. By the time we pulled in the driveway, Kylie was vomitting, lethargic and completely limp. She wouldn't drink anything and wasn't urinating. We ended up in the ER last night at about 7pm. They got us right back and when the nurse saw her, she ran to get the doctor. They started IV fluids right away and gave her some anti-nausea medicine. After a few hours, she started to wake up but was still not her sunny self. We got home around 12am and she slept soundly through the night. She was perkier this morning, but started to get crabby as the day went on. Hopefully, she will be more like herself tomorrow. She really hasn't been too happy the last few weeks, so I am starting to wonder what's going on. Her labs looked ok and she is teething, so I am assuming that is part of it but I miss my sweet girl! She also had another fever today, so it's probably the same virus. Needless to say, we will not be summer girls the rest of the year. I worked friday evening and didn't get home until 330am, so my sleep schedule is still messed up. I slept a lot today, so hoping I am caught up. We are going to work on our sleep schedule this week for everyone. The Stroll for Epilepsy is on thursday, so hopefully it will cool off by then so we can bring Kylie. The walk starts at 6pm at Lake Phalen, so if you don't have anything going on, we would love to see you there! Neil is getting the final head count on golf/dinner, so if you haven't contacted him yet, please do so ASAP. Also, if you plan on attending the dinner/raffel only, we need to get your info. Grandma Perlt did suffer a small stroke, but is doing great and is now home. We are so thankful! Thank you for the continued prayers. Keep cool tomorrow!

Friday, July 28, 2006 0:09 AM CDT

Good evening. I thought 2006 was going to be a better year than last, but apparently I was mistaken. We just got home from the hospital. My Grandma Perlt had a stroke tonight and we aren't too sure what the outcome will be. She is having a very hard time w/ her speech and can't use her right hand. She is on my floor at the hospital, so at least I can keep an eye on her tomorrow while I work. =) Please keep her in your prayers. We've had a rough few days here. I have been having a hard time sleeping, since I worked night shifts over the weekend. By the time I fall asleep, it's 330am and then both girls have been up at 4am. Then this morning, Kylie started uo with her vomitting episodes. They all happened after she took her meds, so I think it just hit her gag reflux. But, in the past she has refluxed into her sinus cavities, but hopefully this time will be different. It has been a long week. Monday, I got some scrapbooking done w/ my good friend Jody. Tuesday, Kylie had PT, OT and speech at Gillette. We got to see Zoey's "Super Sue"-whom I agree is SUPER!-, as our therapist was on vacation. Kylie's OT is leaving Gillette, which is sad, since she has worked w/ her since she was 6 months old. She will start having OT every week, along w/ speech. We had our last day of PT and plan on taking a break from it for a while. They think she is very close to walking, it's just up to her to decide when she wants to do it. My mom and Neil made her a new "walker", out of PVC piping. She loves it and she is able to get around much better. Tuesday evening, Caroline and her mom Abigail, came over for dinner and for some play time. Caroline showed off her walking skills in her gait trainer, while Kylie held on the back and walked behind. The girls were so proud of themselves- very cute. Kylie woke up at 130 in the morning wed, crying and moaning. Her temp was 99, so I thought it was just her teeth bothering her. She then started to shake pretty bad and I could feel her tense up, then relax in my arms. We took her temp at 2am and it was up to 104.1. So, not sure why she is spiking fevers again but hoping it was just another passing virus. So, she woke Ava up and both girls were awake for the night. (Are you seeing a pattern?) I am hoping for a better night of sleep tonight or I'm going to have a nervous breakdown. =) Actually, I almost did yesterday. My sister convinced me to take Kylie in to get her first haircut. We decided the mullett had to go. The back looks good but the front - total boy cut. Her bangs are about an inch from her scalp, not "just above the eyebrows". So, we will be slowly growing those out. Well, I'm going to crash. I picked up tomorrow evening shift, then we are supposed to be going to a cabin saturday. Praying my grandma is doing better by then. Please send up lots of prayers for her! Much Love- The Gibbons Family

Monday, July 24, 2006 4:47 PM CDT

Hi all. We hope you all had a great weekend. I worked all weekend, so the girls hung out w/ Neil and Grandma Karen all weekend. Ava caught the bug Kylie had last week, so she has been a little droopy but looks like she is feeling a bit better now. Kylie woke up at 230 am friday night, so Neil had the pleasure of a late night party w/ her. =) Kylie had therapy today and got 2 try out 2 new walkers, both which are just her size. It is going to be a challenge to het her to use them. She likes to walk out of the walker and around it, so we will be practicing all week. Kylie has therapy at Gillette in the morning, then we are going to be getting together with a new daycare pal. Later in the afternoon, Kylie's friend Caroline will be in town from ND, so we plan on getting together with them. ECFE is on wed and Kylie has speech on thursday. We are going to spend most of the week getting the house organized for daycare and then we are headed out of town on sat. My good friend Suzie is getting married in Sept and I am a bride's maid. They are having a wedding party get-together on sat at a lake, so we should have a great time. Kylie hasn't been in a lake since last summer, which she didn't enjoy at the time, so this should be interesting. We have a wedding shower on sunday, so as usual, we have a full week. Tonight I am having a scrapbooking night with friends. Kylie is massively teething and driving us nuts doing so, so we are praying those teeth come in soon. Both eye teeth are just about in, so she's looking a little goofy. She will probably be done teething just in time for Ava to start. =) So, not much new to report. Just enjoying low key days. Next week is the Stroll for Epilepsy Walk. Email me if you would like to join us. Also, we are trying to finalize the golf tourney. Many people have said they are going to play, yet we have very few registrations. So, please turn in your info ASAP! This includes my dad, brothers, etc. =) More later...........

Thursday, July 20, 2006 11:37 PM CDT

****NEW PICTURES****

****FOR ALL THE PEOPLE THAT STILL WANT TO GOLF OR JUST COME FOR DINNER YOU NEED TO SIGN UP BY THE END OF THE MONTH SO WE KNOW HOW MANY PEOPLE ARE GOING TO GOLF AND OR HAVE DINNER. THERE IS A LIMIT WE HAVE TO HAVE SO LET ME KNOW. E-MAIL ME AT GIB2514@AOL.COM THANKS*********************************

Good evening. The girls are snuggled up with their daddy, so I have a quiet few moments to myself. We haven't been doing a whole lot since getting home, just recovering from our vacation. I had dinner last night with my 7940 moms' group. It was nice to catch up with everyone and have some "adult" conversation. Kylie had therapy tuesday and yesterday. If we can get her to walk by the end of august, she may discontinue PT at Gillette and follow-up in 6 mo. Not sure we will be there by then but we are working hard everyday. The girls both had ECFE yesterday, which I'm not sure if we will be continuing or not. This morning, I dropped Ava off at daycare and Kylie and I headed off to McKenna's mommy's house. We hung out for a while, then had lunch at a Mexican restraunt. Kylie, who is usually so well behaved at restraunts, decided to display some "terrible two" behavior- climb in the booth, on the table, dumping out the chip basket, the salt & pepper shakers, etc. Although she was being naughty, it was so fun to watch a little bit of "normal". McKenna's absence was so strongly felt. We miss her cute giggles, her big blue eyes, just her complete presence. Please continue to keep her family in your prayers. Neil and I had our last softball games this evening. It's hard to believe that summer will be over soon and Kylie's 2nd birthday is right around the corner. She is 22 months old today. If anyone is interested, we will be joining our friends from 7940 on Aug 3rd for the annual Stroll for Epielpsy walk around Lake Phalen. I believe the walk starts at 6pm. We are not going to be collecting donantions, as we do the TS walk in May and Kylie's charity golf tourney is coming up next month, but if anyone would just like to walk with us, feel free to join us. This year, we are walking for Angels Drew and McKenna, for Mary, Jessi, Zoey, Katelyn, Austin, Caroline, Jess, Elaina, Heather, Kiresten, angel Maddie and of course, for our special girl, Miss Kylie Jo. Email me if you plan to walk and I will give you more details. Hope you all have a wonderful weekend! Much Love- The Gibbons Family

Monday, July 17, 2006 11:50 PM CDT

Hi all. We are home, exhausted and needing a vacation from vacation. =) It was a long drive home, almost 10 hours. We had a long detour this morning as we searched for bagels, (finally found some at Dunkin Dounuts- go figure). Ava was not as happy about sitting in her car seat today, so we had to stop for a while to streach our legs. We got home this evening and the girls were thrilled to snuggle up w/ Grnadma Sue, as well with my family. They brought over pizza and cake to celebrate my b-day- thanks guys! After the conference ended yesterday, we took the girls and went to lunch at The Cheesecake Factory, which was great. We shopped around at the Woodfield Mall. The girls unexpectedly got their pictures taken, at a new store that was doing promotionals. The one of Kylie is the large one (I couldn't figure out how to shrink it), at the top of the page. I will try and post pics of our trip later this week. After shopping, we went back to the hotel and took the girl for a swim. They love the water, so we will have to try and do more at home. I can't explain how truely amazing the conference was. We met people from all over the world. There were people from 9 contries and from about 38 states. It was nice to not feel so "alone" with this crappy disease. We met a core group of people that have kids just about Kylie's age and it was amazing to see how similar they are. The other parents are truely awesome and we just wish they lived closer to us. Chris Hawkey, from KFAN in MN, drove all the way to IL w/ his band and WITHOUT airconditioning, (it went out on the drive), just to play a few songs for the crowd. He is promoting his new CD called "The Pursuit", (available at Best Buy and Buffalo Wild Wings) and 100% of the proceeds go to the TSC Alliance. How truely amazing is that? We have discovered that Kylie has one of the best TS doctors (Frost), caring for her and how lucky we are to live so close to his clinic. Many of these people travel hours just for check-ups. And, if we end up having surgery, we will have the best neurosurgeon caring for her. Besides our meeting w/ Dr Dunn, we also met w/ a dermatologist to discuss the horrible lesions that she may one day get on her face. He examined her and said she does not currently have any but to watch for them to pop up in the next few years. This is where this disease seems especially cruel. Aside from seizures, kidney problems, learning difficulties, heart problems, multiple meds, etc, all which are invisable to the naked eye, these facial lesions, (angiofibromas), seem to be the icing on the cake. It is a daily reminder to theses kids, every time they look in the mirror, that they are different. We have heard of horrible cruely from other kids and dread the day we may have to experience it with Kylie. So, if they start to pop up, we will begin laser surgery. We are truely hoping this won't be an issue Kylie will have to deal with but we aren't holding our breath. Kylie is feeling so, so much better. She has literately smiling from the moment she woke up. She is really trying hard to talk. Since we left last week, she has said "hat", "hot", "light", "yeah!", "yes", "glasses"- my mom swears & "eyes". We are really hoping she will continue to say them w/ more consistancy. She is still trying SO hard to walk and we are shooting for her b-day. Keep the prayers coming. She is really close, just needs some confidence. Now that we are back, I am going to start focusing again on getting my daycare up and running. I will be ready for sure Sept 1 but would like to start in August. Let me know if you know anyone interested! I will be doing daycare w/ a friend, in my home. I think I've bored everyone enough for tonight. Continued prayer requests for the Olson family, as they continue to grieve for McKenna, for Kaitlyn, who is struggling w/ many seizures, for our new TS friends, especially Kiersten, as she prepares for surgery, for Mary, that her seizures will go away, and for the many, many friends we have met on this journey, that they continue to heal from their surgeries, that their seizures stay away, that their tumors don't grow back, that their cancer stays in remission. Thanks for checking in w/ us! Much love-
The Gibbons Family

Sunday, July 16, 2006 12:04 AM CDT

Hi all. The conference is over and we had a great time. We met so many amazing people w/such similar stories. We got an individual conference w/ Dr Dunn, who would be the neuro surgeon that would do Kylie's surgery. We love her and have total confidence in her. When the seizures start again, we will be going ahead w/ surgery. Our biggest hurdle until then will be gettin her infections controlled. Since we took Kylie off her antibiotic, the "fog" has lifted and she no longer seems drunk. We are hoping it was not a seizure that she had, just that she was extremely hot/tired/not feeling well. We will keep a close watch on her in the mean time. Dr Frost said the antibiotic most likely affected the way her seizure meds were metabolized, causing the "drunkness". She has added a few more words- "wet", pointing to her wet diaper, and "light", pointing to the light. She is moving around better too. Ava is still pretty much just a ball of chub. She rolls both ways, but not often. She is just content to lay on the floor, watching her sister. She is very vocal and it has sounded like she has said "hi" and "mom". Probably not, but it is fun to listen to. We will be driving home tomorrow. We are leaving in a bit to do some sight seeing, but I will update more when we get home.

Thursday, July 13, 2006 11:33 PM CDT

Good evening. There is a pit in my stomach tonight, as our days of normalacy seem to be coming to a close. Kylie had been acting "drunk" for most of the day, as well as somewhat irritable. This evening, my mom thought she had a 35 second staring seizure. I am hoping she was wrong, that she was just tired and hot but she couldn't get her attention for a while. She has never had staring seizures, so if she did in fact have one, it could mean it is coming from a different area of the brain. =( She acted today like she did the week she was in sub-clinical status in feb. We will be watching her close the next few days. If she did in fact have a seizure, her pattern will be to have a few over the next few days, then start at 20+ a day. I am so not ready to walk down this road again, not anywhere near ready for brain surgery. Please, please, please pray the seizures stay far away from her. The dinner tonight was outside and it was SUPER hot, so I am hoping that if she did have one, this is why. A few kids fainted, so they may be moving things indoor tomorrow. Luckily, Dr Frost and his staff is here, so they had us increase one of her nighttime meds and stop her antibiotic. They said the antibiotic could have lowered her seizure threshold and as she hadn't been on this particular one since the fall, during her long stint in the hospital, we are crossing our fingers for a better tomorrow. Otherwise, we are meeting so many awesome families w/ TS. The girls got to swim in the pool today and Kylie went on a pony side. We have an early day, so I'm going to turn in. Please pray hard for our little sweetie.

Wednesday, July 12, 2006 10:22 PM CDT

Good evening. We made it safe and sound to Chicago. It feels GREAT to have a change of scenary. The girls were pretty good on the ride here, for the most part. Thank God for the Elmo DVDs! Our trip didn't get off to a great start. We had planned on leaving tuesday morning after therapy, but kylie had other ideas. Her fever started on monday morning and by tueday morning, it was 104. We gave her multiple doses of tylenol, but it doesn't seem to want to go below 100. She has been in a pretty good mood despite the fever. We broght her to the ped yesterday morning, (actually, Neil did, as I needed a break from doctors =)and her WBC count was low, which indicates a virus. Her hemeglobin has also been quite low lately, about 9, where she usually runs at 13. So, a little concerning, especially because of all the side effects her meds can cause but we will be watching her closely. The doctor also thought she may have the start of thrush (a fungal infection), in her mouth, most likely due to all the antibiotics she has been on. So, we have a prescription for that, just in case. Her antibiotic was also changed and since the change, her goopy nose has cleared, but still the fever. We finally got on the road yesterday afternoon and arrived at Wisconsin Dells about 630pm. Grandma Karen, Uncle Ben & Auntie Kari met us shortly after. The hotel had a waterpark in it, so we went swimming w/ the kids. It didn't go over quite as well as I expected . Ava had fun but Kylie was getting crabby from being tired and hungry (we were waiting for our pizza to arrive), as well as from Auntie Kari's bright idea to let Kylie go down the kiddie waterslide by herself. She started on her back, then tried to crawl down, and ended up going head over heels. Luckily, I was at the bottom, so she didn't go under. We got up this morning and ate at a great pancake place. We headed back to pack up the van, then went downtown. We went into a few shops, where Kylie got a t-shirt that says, "I have a Cute and Sexy Grandma!" (Guess who bought her that?) We got some icecream, then went to an old fashion photo studio. Neil, the girls and I got out pics taken but it was sort of a disaster. Ava was getting hungry and was crabby. Kylie had to sit on a box and kept reaching over to play w/ the props, then kept pulling Ava's headband off. We did get a cute pic of Ava by herself. We may try it again on the way home. We arrived in Chicago around 6pm. The resort we are staying at is great. We have a great view from our room and there is enough space for the girls to play. As soon as we got here, I set Kylie down and she yells "Yeah!" It was SO cute. Last night, she added another word to her vocab. She pointed at Neil's eyes and said "Eyes". Slowly, but surely, her vocab is picking up. I am keeping a close eye on her though. She was making me nervous monday night. Lots of twitching and movement of her left arm during her sleep. All of her night time seizures have included her eyes opening and stiffening, so I'm hoping this was just sleep stuff. She also was talking in her sleep, saying "Dad" and clapping at the same time, so she must have been dreaming about her daddy. Tomorrow, the conference kicks off in the afternoon. In the morning, Neil and I are going to try and get on the golf course, and as I have not golfed yet this year, it could be a long day. My mom is going to try and get to the spa and get her hair cut, (which sounds MUCH more fun to me, but I promised Neil), and then we will start meeting all of the TS families. We have already seen Dr Frost 2x, which makes me feel much better that he is so close by, and he told us there will be about 600 TS families here this week. Kind of feels like "going home". =) We are still missing our sweet friend McKenna. She is in my taughts all day and still seems so surreal we won't be seeing her anymore. Kylie and I love to look at her website, many times a day, just to see her beautiful eyes. We miss you Muffin! Please continue to keep the entire Olson family in your prayers, especially, Shannon, Rand and Cam. www.caringbridge.org/mn/drewolson. More later.............

Monday, July 10, 2006 1:57 PM CDT

Hi all. We had a long weekend, filled a mixture of tears, hugs and reflection. We attended McKenna's Celebration of Life on saturday. It was such a beautiful service. Pastor Pat was a wonderful speaker, reminding us that McKenna's death was NOT what God wanted. Sometimes it is so hard to be faithful during times like this and we do need reminders of God's plan. It was so very hard seeing McKenna- she looked so very beautiful. Kylie had been chattering away all day but when we got up to the casket, she became silent. She kept looking at McKenna, then at me, then at McKenna. She started pointing at her, then waving, like, "Hey, there's my friend". I explained to her that McKenna was sleeping with the angels. So very hard, but knowing she is at peace, not having to battle the seizure monster anymore makes things a little more bearable. Only a little. A group of us "7940 moms" (and dads =), sat together, realizing know easily the situation could be reversed, that we could be sitting there with our own child. There are no guarentees in life, just the promise that someday we will all be together, eternally. One of the prayer groups that had been praying over McKenna did a special prayer over Kylie, which we so very appreciated. We are praying she continues to do well and that those nasty seizures stay away. Unfortunately, we are battling fevers again today. She was 101 this morning, then up to 102. I gave up calling ENT, as we have 3 unreturned phone calls from last week. I called the ped this morning, who switched her antibiotic and added another med, which will hopefully prevent the bloody diarrhea from returning, which she had last time she took this particular antibiotic. She also referred us to a different ENT at the U of M, for a second opinion. If he has no ideas, we will be seeing an immunologist, who can hopefully help us pin point what is going on. We are a little concerned that since the augmention that she has been on for 3 weeks isn't totally clearing things up, she may already be getting immune to certain antibiotics. I just pray she isn't sick this week while we are on vacation. We are looking forward to getting away and a sick kiddo will make for a long week. I worked the whole weekend, so Neil and my mom hung out with the girls. Kylie has therapy this afternoon w/ Angi, then hoping to get the girls down for a long nap so I can start packing. We are leaving for the Dells in the morning, after Kylie's therapy, then driving to Chicago wed. We will be returning home next monday. My brother is dog/house sitting and huge thanks to Sue, whom I'm sure will be doing most of it. =) We are working hard on the 2nd Annual Kylie's Hope Charity Golf Tourney, which raises money for TS research. If you plan on golfing, PLEASE get your info turned in soon, as it will better help us plan things. Also, if anyone wants to donate prizes for the raffle, we would GREATLY appreciate it! We are hoping to have a big selection of prizes this year. The date of the golf tourney is Aug 19, which is rapidly approaching, at Como Golf Course. Dinner and the raffle will follow at Joe Sensor's in Roseville. If you're not a golfer, you can come to the dinner/raffle part. I want to thank my awesome hubby, his cousin Kelly Gibbons and our very own Grandma Sue, who have all been working relentlessly on the tourny. We are hoping to surpass the amount we raised last year, which was $13,000. Another bit of "exciting" news comes from my end of the family. A friend and I are going to be starting daycare. I will still be working at United but since I work part time, I am able to take on this new adventure. I average 2 days a week the hospital, but when I work my 12 hour weekends, I am off for two weeks. It will be so good for Kylie to be around other kids and you all know how much we love kids at this house. I grew up with my mom doing daycare and Laura is the oldest of 5, so she has plenty of experience under her belt. We are going to be getting licensed and hope to start in august or september. So, if anyone knows of anyone looking for daycare, send them our way! =) That's all for now. We are taking the laptop with on the trip, so hopefully I will be able to update along the way. Please pray that Kylie's fever will go away and she will be feeling perky for the trip. Also, please continue to keep McKenna's family in your prayers, as they grieve for her and as they are approaching the 1 year anniversery of Drew's death. Much love to you all- Maria, Neil, Kylie & Ava

Thursday, July 6, 2006 10:39 PM CDT

Good evening. Things are quiet tonight, so I thought I would do a quick update. We saw Dr Forst on wed and got a great report, although it is so hard to be happy about it when our friends are grieving the loss of their beloved daughter. McKenna was such a beautiful child and it makes my heart stop when I think how quickly your life can be forever changed. I hate seizures, so, so very much. While we have been very blessed to have had almost 4 months without them, I know they can come back in an instant. We will continue to pray that they stay away. Dr Frost said Kylie looks great and he is very impressed with how well she is doing. She crawled right up on to his lap, examined his tie, his teeth and his nose. She checked out his shoes and his ID badges. She tried getting the "classified" information from his pocket, without success. I'm just glad she didn't find his belly buttton or look for Elmo. =) He said that she is "right there" in regards to her speech. She has so much to say but just can't quite get it out yet. He said her upper body tone is great and her arms are very strong. And although her legs aren't quite perfect yet, they are very close and he thinks she will be walking soon. He said she is developing very well. We can wait until the end of 2008 for a follow-up kidney CT scan, since her last 2 scans were normal. She won't need an MRI for 4-5 years, unless she starts to show neurological changes. And, knock on wood, we don't have to see Dr Frost until after the New Year! The biggest concern right now is her sinuses and the repeated infections she keeps getting. He does want us to get a second opinion, as he doesn't understand why they aren't fixing her. =) Hopefully, as she grows, her sinuses will grow as well and the openings will stay open. But, if she starts seizing again, she absolutely can not have an active infection. So, this will be our "project" to be working on. He wants her to continue an extra week of antibiotics for the week we will be on vacation, but I am having a hard time convincing ENT. Actually, the doctor we spoke w/ said no and our dr isn't calling back, so I will give it another whirl tomorrow. Hoping we get her labs back tomorrow from last week too. So, no med changes in the near future. Praying to stay seizure free but if something changes, they will proceed with surgery to place the grid, which will be put on the right side of her brain, to map where the seizures are coming from. Hopefully it won't come down to that. We have a busy weekend ahead. I work tomorrow evening, as well as my 12 hr night shifts on sat & sun. Saturday, which is Neil's 29th birthday, we will be attending McKenna's funeral in the morning, then our good friends' 1 yr old son's, Noah, birthday party. Seems surreal that we will be mouringing the end of life and the start of life all in the same day. Kylie has therapy tuesday morning at Gillette, then Neil, the girls and I will be heading off to Wisconsin Dells. We will meet up w/ my mom, Auntie Kari and Uncle Ben later that day. On Wed, we will be driving to Chicago for the National TS Conference. We are looking forward to meeting so many other families afflicted with the same disease as Kylie. Hoping she stays healthy during the trip. Kylie had speech this morning at Gillette, then we hung out with Nicole and Noah. The kids had a great time turning our picnic into a huge mess. After they left, I spent the day playing with the girls- no phone calls, no laundry, no cleaning. We sang songs, played with puzzles & toys and just enjoyed each other. I thank God every day for the joy He has brought into my life. Every smile, every giggle, every sticky finger and chocolate covered nose, I treasure. Love to you and yours- The Gibbons Family

Wednesday, July 5, 2006 5:10 PM CDT

Kylie has a new angel watching over her today. Her bestest friend, McKenna, lost her battle to Alpers today. Please keep the Olson family in your prayers. www.caringbridge.org/mn/drewolson

Sunday, July 2, 2006 5:38 PM CDT

****New Pictures****
Good evening. Ava is 5 months old today. Tomorrow, she will be the exact age Kylie was when she was dianosed w/ TS. It stuns me how much of Kylie's infancy we lost to this disease. I really don't remember much of 2005, except for being really sad. How much a year can change things. As usual, we have had a busy weekend. On friday, Kylie and I spent the morning at Children's, at the heme/onc clinic. She slept through most of the procedure, which was awesome. She had her port declotted, labs and blood cultures taken and one dose of IV antibiotics, in case she does have a port infection. She hasn't had a fever since thursday, so whatever it was, I'm assuming it's resolved. Hoping we will get the culture results back tomorrow. After our appointment, we went to visit our sweet friend, McKenna. Heartbreaking, to say the least. At mass today, the reading was about a mom asking Jesus to heal her daughter and He did. I just don't understand why this family's pleas are not being heard. They already had to suffer through the loss of one child, so why another? I'm having a really hard time with my faith right now. Although I am so grateful for the health of Ava and that Kylie is doing so wonderful right now, does God not see how much faith could be restored to thousands if this little girl could get her miracle? But, we will continue to pray and to believe. Friday evening, the girls and I met up w/ my mom and sister and headed out to the mall, for dinner and for swimsuit shopping for me, (not a pretty sight, I assure you). On saturday, the girls and my mom and I headed out to visit w/ my grandparents. It is so nice to be able to see them during the summer months. We really miss them when they are in FL, so we have to make up for lost time now. Today, we went to mass, then to the Twins game for Armed Forces Day, (thanks for the tickets Andy). My entire family went, except Kari, who was out of town. The girls were pretty well behaved, except for Kylie pulling the hair of the girl in front of us and trying to check out everybody's "diapers", (to see if Elmo is on the front) and lifting everybody's shirts, to see their belly. She also likes to check out ladies clevage, so it looks like we are raising a regular perv. =) Kylie's speech is taking off a bit. She is now saying "mom" (in a deep, gruff voice), "a-tis" (what's this), "tat" and points (that), "eh-ma" (elmo) and "vvvvaaaa" (Ava). So, even though it sounds like a foreign language, we are starting to understand her better and we LOVE the communication. She is also walking holding on to only one of your hands now, which is a huge improvement. If she can just build up her confidence a bit, she will be walking on her own soon. She is making such awesome progress but I'm so worried the seizures are going to come back and crush all the skills she has learned. Fingers crossed. We see Dr Frost on wed and I can't wait for him to see how well she is doing. He has never seen her when she is not constantly seizing. I'm just hoping she doesn't try to see his belly and diaper. =) We leave next week for Chiacgo but decided to forgo the flying and drive instead. We are going to leave earlier than planned and stop in Wisconsin Dells on the way. Ben and Kari are going to the Dells with us, so we should have a blast. I'm trying to update pictures but my computer is being pesky. Hopefully they will be on by tonight. Have a wonderful 4th of July. A huge thank you to our military- thank you for helping keep my babies safe. Continued prayers for Miss McKenna and of course, for continued seizure free days for Miss Kylie Jo. Much love- The Gibbons Family

Thursday, June 29, 2006 3:13 PM CDT

Hi all. We have been having a long week. Kylie was pretty irritable on tuesday and as we overslept, we had to cancel our appointments and we just stayed in all day. I got home from work about 1230am on tuesday, got to bed about 130am and Kylie was up at 230am. After trying for an hour to get her back to sleep, I gave up. She had a temp of about 102 and was absolutely wild, (I think maybe delerious!) We had french toast at 430am and she stayed up until about 7am. She had been spiking temps anywhere between 100-102 from mon-wed, so they are thinking she may have an infection in her port. We have to go to the heme/onc clinic tomorrow, so they can declot her port, draw labs and blood cultures. Although her sinus infection seems better, she has still been crabby off and on, so something must be going on. I have not noticed a temp today but she has been crying a lot. We had ECFE yesterday morning, then Kylie and I crashed from 12-5pm. One hour of sleep for me was not cutting it. I had planned on bringing her in to the ped in the afternoon, but slept through it. Today, Ava went to daycare and Kylie and I met up with friends and went to the water park. She absolutely loved it! We might go again this weekend. Please continue to keep Kylie's friend McKenaa in your prayers. She is awake from her coma but unavle to see and is still having seizures. Also, a fellow TS friend is having open heart surgery tomorrow and is in desperate need of prayers. Hug your kiddos tight-

Tuesday, June 27, 2006 0:15 AM CDT

Good evening. I just got home from work but I thought I'd do a quick update. Kylie is doing pretty good. Still no seizures but still battling the sinus issues. The final cultures came back today and the latest infection she has is something she has never had before, that I can't pronounce and one I have never heard of, even being a nurse. The ENT office called 3x today, making sure she was doing ok on the antibiotic they started. I thought it was a bit overkill, until she spiked a temp tonight. So, the antibiotic they started on friday may not be the right one to be on. I'll call tomorrow if she still is having fevers. Her nose is still draining a bit and she still has the cough, but her personality has done a complete 180' and she is back to the Kylie we are used to- sweet, giggly and full of smiles. Homecare came today to draw her labs but her port is clotted yet again. We will be spending the later half of tomorrow morning in the heme/onc clinic at Children's, hoping to fix the problem. The dr said this would probably happen again, as she has a fibrin sheath around the port. The homecare nurse was telling us about a new protocol they have been using w/ kids like Kylie, where they inject a form of alcohol into the port , 2x a day over 6 days. The alcohol eats away at the sheath and eats up all the bacteria in there. We will find out tomorrow if that will work for her. We are wondering if her temp spike is related to the port being flushed as well, since she hasn't had a fever since starting the antibiotic. Who knows. Kylie finally started saying "mom" today, although "dad" has sort of disappeared. She hasn't said it since Nov, so it is music to my ears. =) So many new sounds are coming out of her mouth, so hoping more words will too. How I long to sit and have a conversation with her! We are kind of stuck on the walking thing. Although she cruises around everything and everything, her hips are still loose, (she has the Elvis sway) and she is afraid to let go of what ever she is holding on to. At times, say when she is reading a book, she will let go and stand alone but as soon as she realizes she's not holding on to anything, she freaks. So, baby steps (literately). I forgot to mention that as well as being completely off the pacifier, we have said good bye to the bottle and she is doing great with the sippy cup. I thought this would never happen and am so happy with her progress. We have also started to work a little bit with potty training. I know it's early, but I figure it will probably take a while, so we are getting a jump on thing. She pats her diaper when she is wet, wakes up from naps dry and is constantly taking her diaper, (as well as her sister's diaper) off. She loves to run around naked, so I guess this is as good as time as ever to try. We had a good weekend. Saturday, I worked during the day, then we dropped the girls off at Uncle Andy's & Auntie Andrea's, while Neil and I went to his 10 year high school reunion. I was nice to catch up w/ everyone. Sunday, we hung out at home during the day. Neil and I actually got to watch a movie. In the afternoon, we went to the car races for the Rev It Up for TS. It was a little loud for the girls, so I think next year they will stay home. I worked this evening and Kylie went to the Roseville parade w/ Grandma, while Av hung out w/ her daddy. Tomorrow, we have PT,OT and speech at Gillette, the to the heme/onc clinic, then off to work for me . It's going to be a long day, so I'm going to turn in. Please continue to keep McKenna, as well as her awesome family, in your prayers. Sweet dreams- The Gibbons Family

Sunday, June 25, 2006 4:15 PM CDT

Please keep Kylie's bestest friend, McKenna, in your prayers today. (www.caringbridge.org/mn/drewolson)
She is in a drug induced coma in the PICU at St Paul Children's, battling another round of seizures. Pray when she wakes up, her vision will be intact. Pray she will remain comfortable and pray for peace for her family. We love you Muffin!

Friday, June 23, 2006 5:12 PM CDT

Hi all. I tried updating yesterday but just as I was about to hit enter, Kylie hit delete and I was too tired to do another one. =) SO, we had a LONG week. Kylie was so irritable and in so much pain and I was so irritated w/ ENT that we were not a fun group of girls to be around. Tuesday, we skipped therapy, as we did wed and thursday. We brought her in to the ENT on tuesday, where they cultured her sinuses. I made the mistake of taking her to ECFE on wed and she cried through the entire thing. Ava loved her class through. We tried taking Kylie to the block party on wed night, but more tears eneded things early. I brought her to my 7940 mom's meeting, thinking she would fall asleep along the way. We stayed at the meeting for 2 minutes before we ended up in the ER. Of course, as soon as they took her vitals, she was out cold. I decided to leave at that point, as I didn't want her to pick up any extra bugs. Bad move, because as soon as we hit Kellogg, the screaming started again, as well as the vomitting. She threw up all over the place, then fell asleep. By the time we got home, she was completely out. Neil put her, still in the carseat, right in the tub. His first experience cleaning up puke and it was quite the sight. =) She had been running fevers off and on all week, totally miserable but they didn't start antibiotics until last night. Her cultures came back, showing her pseudomonas was gone (yeah!) but she still has an infection, so we got by w/ oral antibioitcs instead of IV. Homecare is coming out monday to draw labs, so hoping it will be uneventful and not end up w/ us at the hemecology clinic. The girls went to daycare today, while I worked a day shift. They had a blast w/ Grandma Karen and the kids. I picked up to work tomorrow, then the girls are spending the evening w/ Uncle Andy & Auntie Andrea, while Neil and I go to his 10 year highschool reunion. Sunday, we are heading out to a TS fundraiser "Rev It Up", which will be the girls first car race. We are getting ready for our trip to Chicago, for our first TS National Confrence. Kylie's neurologist and the neurosurgeon, who would do her surgery, will both be speaking, as well as many other TS experts. We are also excited to meet so many friends who we have only been able to communicate w/ through email. Hoping to have an uneventful plane ride and we are so looking forward to getting away. Big thanks to FL police for catching the Chicago terrorists before we got to Chicago. Nei and his crew are working so hard on the 2nd Annual Kylie's Hope Charity Golf Tourney. All of the proceeds benefit research for curing TS. There will be a raffle after the tourney, w/ dinner at Joe Sensors. Last year was a blast and the money goes to a good cause. And on top of everything else, you get to hang out w/ a super cute blue eyed beauty. What more could you ask for? Please email us if you would like to join us. A huge thanks to "Grandma Sue", who has working overtime getting donations and sponsers for the tourney. You are awesome! Well, that's all for now. We are going to grab dinner, then walk up a few blocks to watch the "Back to the 50s" car show at the State Fair. Kylie is doing 100% better today- amazing what 2 doses of antibiotics can do! Have a great weekend! Much Love- Maria, Neil, Kylie and Ava

Tuesday, June 20, 2006 11:36 AM CDT

Good morning. I got the final reports back from Dr Frost's office today and instead of boring you with all the medical details, here is the shortened version. She had 2 PET scans done, a TS PET and another one. The TS one showed 26 tubors, with 3 being ones of main focus. The other scan didn't show a specific area of seizure activity, which is common (supposedly). Her EEG was normal (who-hoo!) So, when she isn't having seizures, her brain is normal, or what's normal for her. =) Right now, we are going to continue to keep our fingers crossed she stays seizure free, (going on 4 months!) If she starts seizing again, they will do another EEG, just to make sure the seizures are still coming from the same spot that they were before. If they are, we will proceed with surgery. They would definately put the grid in first, to map where the seizures are coming from. If it looks like they can remove the tubor(s) and possibly the surrounding area of seizure tissue without affecting function, she would have that done in a second surgery, when they remove the grid. This would be the route we will most likely go with, as the younger she when she has surgery, the better she would do recovering. Waiting until she was over 4, she may not recover all or any function lost during surgery. So for now, it's a wait and see game. She is currently taking 5 seizure meds and she will have to be seizure free 4-6 months before he will wean any meds. We are just worried about long term effects on her organs from all of her meds. They say she would have shown damage by now but I take care of people w/ kidney failure, so I highly disagree! As for her sinuses, we are waiting for her ped to call back. We brought her in yesterday to have her lungs checked, since it seemed like the junk was settling there. Her ears and lungs are fine but she definately has a nasty sinus infection. Her ped called ENT to see what the plan will be and we are on day 2 of waiting to hear. Apparently, he never got back to the ped. Her ped and neuro are in agreement about treating the infection verses waiting. Cipro would be the main choice, but they are holding off on that med, as it can affect her seizure threshold. Just got off the phone her ped and ENT wants to see her this afternoon, to culture her sinuses before starting antibiotics, to make sure she's on the right one. We have to see the geneticist at 230 for a follow-up, so hopefully they can squeeze us in. Busy, busy as usual. Tomorrow, Kylie and Ava both start their summer ECFE program, which runs for 5 weeks. I am hoping Kylie is feeling well enough to go. She has been highly irritable since last week and the only thing that makes her happy is Elmo. Hopefully she gets over this bump soon, because I am sick of "Elmo's Song" running through my head! Hope all you dads had a wonderful Father's Day. More later......

Sunday, June 18, 2006 4:08 PM CDT

Top 10 reasons why I love my daddy:

10. He has the best arms to snuggle on and the best belly to curl up on.
9. He never yells at me, no matter how many naughty things I do.
8. He takes such good care of me whenever I am sick and never forgets to give me my meds.
7. He knows all of the Elmo songs.
6. He would rather spend a sunday morning watching Elmo with me than spending it on the golf course.
5. He is working so hard on my golf tournament, just so a cure might be found for my icky disease.
4. When mom works, sometimes we have Oreo blizzards for dinner. He gets VERY concerned whenever I get messy and can make sure I never get ice cream on my shirt.
3. He swings outside w/ me and takes me on bike rides.
2. He gave me my big, beautiful blue eyes.
1. He is the best daddy in the whole world and I am so lucky to have him be mine.

Love Kylie

Neil- Thank you for walking this journey with me. There is no one else I would rather walk with. I love you- Maria

Saturday, June 17, 2006 0:46 AM CDT

One of Kylie's PET scans is back and it is not at all what we were expecting. Instead of the 2 or so tubors we though she had, we found that she has 26. No, that's not a typo. 26 nasty calcifications are in my baby's head. There were 3 that "uptake", or probable seizure activity. One in the right frontal lobe, one in the right middle area and one on the left parietal lobe. The PET corralates w/ hwe MRI and her EEG, with the seizure activity coming from the right side. I just feel sick about the whole thing and I wonder what kind of life she will possibly have. Carol, Dr Frost's nurse, told us we need to remember that it's not the number of tubors she has that affects function but where they are located. We know of kids who have more tubors than her that are doing awesome, functioning normally, and kids who have far fewer tubors and are doing a lot worse. It still sucks though. Knowing that even if they take the active tubor out, seizures could start in any of the other tubors is disheartening. We should know about the other PET on tuesday. They also said the neurosurgeon "won't touch her w/ a 10 foot pole" while she has pseudomonas in her sinuses. The doctors are differing in opinions on what to do. ENT wants us to wait to see how she does over the weekend and bring her in if she's still draining after 5 days. We are going on day 3 of fevers and I have a very hot, restless lillte girl wiggling on my lap right now. I just hope 5 days of an active infection doesn't set off her seizures. We are going to see infectious disease next week, per Dr Frost's request. We need to get the infections under control while she's not having sseizures, not during the chaos. Waiting for the other shoe to drop...............

Friday, June 16, 2006 8:05 AM CDT

Good morning. What a long week. Kylie is sick again. She has been super irritable since tuesday, crying and whining over everything and everything. I was worried that she was maybe having some seizure activity going on, causing the irritability, until her fever started yesterday. She has been running about 100-100.5 since yesterday morning. She had been having some drainage from her nose that was clear but this morning it is thick green. I am going to call the doctor in a bit. He'll probably think I'm delusional, since we were just there on tuesday and she looked great. I thought her behavior was just the "terrible twos", which is why I didn't mention it to him. We still haven't heard back from Dr Frost's office, so I will give them to monday before I start stalking again. It's just frustrating. We kind of have our lives on stand-by and we have been waiting for so long for answers. We have done our part and when the doctors side doesn't follow through, it's irritating. Oh well. Right now we just have to get her through this sinus junk. On wed evening, Neil and I broke out the old roller blades and took the girls for a 6-7 mile ride. Kylie loved it. Yesterday, we met up w/ Uncle Andy and went to the MN Zoo. Ava had a blast, while Kylie was most excited about the giant pretzel she ate. She had therapy, but was pretty crabby though most of it. I work this weekend, so the girls will be with either Neil or my mom. More later........

Friday, June 16, 2006 8:05 AM CDT

Tuesday, June 13, 2006 0:48 AM CDT

Update**** Dr Frost's office called and apparently Kylie's PET scan results "are lost". What? So, they are going to contact Detroit tomorrow and get them sent again. Hopefully they will know something tomorrow and are supposed to call us either way. We have an appointment to see Dr Frost on July 5th, so at least we should know by then. They are going to have home care come draw her labs, then we get to flush her port for hopefully the last time for a long while. Unfortunately, our ENT visit didn't go as well. Her cultures from her surgery came back and she STILL has some pseudomonas in her sinus cavity. But, because she isn't showing any outward signs of infection, we are going to see if her body can fight the infection on her own, instead of pumping her full of antibiotics again, We DO NOT want her to become immune to the antibiotics for future use. If she does start showing signs of infection, they are going to try a new form of anitbiotic, which she would get in the form of a special nebulizer. They now think this nasty bug is just something she picked up from being in the hospital so much. If she stays healthy all summer, we don't have to follow-up w/ ENT until Sept. Today we had therapy at Gillette, then went to a puppet show, which completely freaked Kylie out. Ava enjoyed the show though. Kyliw was horribly crabby today, very whiny and had quite a few tantrums. Not sure if this is the "terrible twos" setting in our if she wasn't feeling well. More when(if) we hear back from Dr Frost..................................Good evening. We had a busy weekend and an even busier weekend ahead. Kylie had her best day of therapy EVER today. Using a walker, (a minature version of an adult walker), she was walking all over. I was SO proud of her and the look on her face was priceless. She was so proud of herself and kept giving me, as well as Wendy, her therapist, these huge grins, like "hey, look at me!" She was cruising between furniture as well, instead of just around it. She was also clearly saying "Dad" today, in addition to her "da-da", (I know "mom" is just dying to come out of her mouth!)She is doing so many new things right now and it is just so fun to watch her learn. Caroline and her family came to visit today and a huge thank you to Abigail for loaning us the walker. Neil and I took the girls out to dinner tonight, then my friend Jody and I scrapbooked all evening. I finally finished Kylie's book that I started when she was born. Now I can start Ava's. Tomorrow, we have PT, OT and speech at Gillette. We will then be meeting up w/ friends for a picnic and puppet show. We see Dr Karlen (ENT) tomorrow afternoon for our surgical follow-up. She is starting to get junk in her nose again, so keeping all fingers crossed we can avoid any more infections. Dr Frost's office called on friday and said we would hear from them mon w/ the PET results. No dice. I didn't get a call today, so I will try on wed if I don't hear before then. Well, that's all for now. Please continue to keep all of Kylie's friends in your prayers. Much love- The Gibbons Family

Thursday, June 8, 2006 10:59 PM CDT

Good evening. Kylie is doing awesome. It seems like she is getting so much stronger every day. She pulls up on anything and everything ,(including her sister and the dogs). She seems to do more without her AFOs on, so we are taking a bit of a break from them. She will probably need a permanent orthotic at some point because when she stands, she curls her toes and when she pulls to stand, she uses the tope up her feet to get up. It looks pretty painful but hey, whatever works. Sometimes, when she is standing, she concentrates on something and lets go of them furniture but continues to stand, probably because she isn't thinking about standing. We are REALLY hoping she will be walking by her birthday. She went to daycare today and used a sippy cup the entire day! So, we are making progress in getting the bottle away. She is showing us more and more that she understands things and although she isn't doing your average sign language, she is using her owns signs and using lots of pointing to show us what she means/wants. It is so amazing how much a person can learn when their brain isn't constantly seizing. We are trying to expose her to anything and everything right now and she is soaking up the world like a sponge. For example, she puts my cellphone up to her ear and pretends to talk from it, she tries to "help " me change Ava's diaper and will point to the elmo on her diaper, then to the one on Ava's, then will roll Ava to her side to show me their is an elmo on Ava's backside. She seems to be hitting alot of the stages she missed earlier on all at the same time, so I am hoping all of this therapy she is getting this summer will help things along. Yesterday, we met up w/ the girls from work and their kids at the MN Zoo. Kylie loves the animals but conked out for 2 hrs in the stroller. I bought a membership so we can spend lots of time their this summer, learning about animals and the sounds they make. After the zoo, we went to go play w/ Kylie's bestest friend, McKenna. Kylie was a wild woman at their house, dumping out toys, sticking her fingers in the VCR and flirting w/ McKenna's big brother Cam. Please continue to keep McKenna in your prayers. We are praying SO hard for your miracle Muffin! Last night, Neil and I took the girls and the dogs and walked to DQ to get ice cream and to the movie store for movies. Grandma Karen stopped by when we got home and was needing a Kylie fix, so Kylie went home w/ her for a sleepover and to spend the day w/ her friends at daycare. I was so pooped, I crashed at 1030 and Ava and I slept until 11 this morning! She went from 730 last night to 8am w/o eating, then fell back asleep after eating this morning. I got so much sleep I woke up w/ a headache! Auntie Kari watched the girls this afternoon while I went to the chiropracter and to softball. The are snoozing now. Tomorrow, we are getting up early and going to the Children's museum w/ the daycare. Neil's Aunt Jessi is getting married this weekend, so we will be busy doing wedding stuff. Still no word from Dr Frost. If they don't call back tomorrow, my stalking will begin on monday. =) I hope you all have a wonderful weekend!

Tuesday, June 6, 2006 8:50 PM CDT

Quick update- the biopsey results from Kylie's sinus surgery were negative (yeah!), so they are still unsure why she gets so many infections. We have to follow-up w/ ENT next week. Kylie is now climbing up onto some furniture (big yeah!), but only if motivated by her new friend Elmo. Also, Ava rolled over tonight! Called Dr Frost's office today but you guessed it, still waiting for a return call. Maybe tomorrow. More then.........

Tuesday, June 6, 2006 1:23 AM CDT

Hi all. What awesome weather we have been having! We spent the entire weekend outside. On saturday, we went over to our friends' home (Nicole & Jay). They had the pool set up for the kids and Kylie and Noah had a great time playing in it. They also spent most of the day beating each other up but they had a good time anyways. We grilled out and spent the day w/ friends. On sunday, we went to down to Grand Old Days and watched the parade. Kylie loved it. She waved to the people on the floats, danced to the bagpipe music and collected many beaded necklaces and stickers. Her new favorite food is chocolate Dip 'n Dots (tiny balls of ice cream). On saturday, she was awake until 130am because we forgot to give her sleeping meds to her, so on sunday, we all went to sleep for the night by 8pm. Monday, Ava had her 4 mo check-up and weighed in at a whooping 17lb, 5 oz. She is 25 inches long and is quickly catching up to her sister. The doctor said she looks great and she is working hard at rolling over. She is just about there but has a hard time getting that big tush to move as well as the upper body. =) Kylie had therapy at home today, which she had Neil with her for, since I had to work. Ava has been sleeping through the night for the most part, so we are all in a bit better of moods lately. Kylie has therapy at Gillette in the morning and we may visit some friends on 7940. Wed, we will be going to the MN Zoo and this weekend we have a wedding. I am going to start calling Kylie's doctors in the morning, hopefully to get the biopsey results and her PET scan results. Although we have been loving every second of no hospitals/doctors, etc, it's time to start getting some answers. Fingers crossed! More later.............

Thursday, June 1, 2006 2:40 PM CDT

***New Pictures***
What a beautiful few days we have had. I have been enjoying that past few days off, hanging out w/ my girls. On tuesday, Kylie had therapy at Gillette and did an awesome job. All of her therapists agree she has gotten so much stronger over the past few weeks. They are trying to get a walker for her to use, so hoping we will get that next week. It is something she will be able to hold on to while she walks, instead of us holding her hands. After therapy, I took the girls down to the lake and we had lunch, then walked around the lake. We came home and finger painted a mural, outside. Kylie had a great time crawling through the paint, painting the dog green and wiping paint all over my legs. We then built a cardborad box fort, complete w/ pink streamers and red flowers painted on the outside. My sister came over w/ her new puppy, Maggie, whom Kylie loved to chase after. Yesterday, the Roseville school teacher came over to do some therapy w/ Ky, then we met up w/ my friend Alicia and her little girl Lily, who is a few months younger than Kylie. We went to Como Zoo, where the girls had a great time seeing all of the animals. Kylie especially liked Sparky the seal. After the zoo, we headed over to Grandma Karen's so Kylie could play w/ the kids. My mom and I took the girls to the mall, so I could get a few new summer items for Ava. She is growing like a weed. She is so chatty, loves to smile and giggle and adores her big sister. Her face lights up whenever Kylie comes near her and doesn't even cry when Kylie wacks her one, (we are working on manners, which isn't going to well). =) We are almost at 12 weeks without a seizure and are praying for these awesome days to continue. She has never had this long of a break and we are enjoying every minute. We still haven't heard back from any doctors, but while our life is having a bit of normalacy, I don't even feel like calling to find out answers. Tonight Neil and I have our seperate softball games, so the girls will hang out w/ either Gram or Auntie Kari. I work tomorrow night, then saturday I may go w/ my mom and the girls down to Mayo, to visit my gram, who is recovering from a knee replacement. Neil and I are going to take the girls to a drive-in saturday night, so we can actually see a movie this year. Sunday, we are meeting up w/ friends and heading down to Grand Ave for Grand Ol Days. It should be a fun weekend. Hope you all have a great weekend as well. Please continue to keep Kylie's best friend, McKenna, in your prayers. Love always, The Gibbons Family

Tuesday, May 30, 2006 7:18 AM CDT

Good morning. I hope you all had a great weekend. Huge thanks to my parents, who watched the girls for us, while I put in a 40 hr work weekend and Neil worked sunday and helped my dad work on the attic the rest of the time. We had everyone over for a bbq yesterday and finished just as it started to down pour. The girls and I went to bed at 730pm last night, so we are well rested today, Kylie has therapy this morning at Gillette, (OT, PT and speech). We are planning a low key week. We may go to the zoo tomorrow and Kylie has therapy on thursday. We are still doing great, not having a seizure for 11 weeks (knock on wood!) I'm going to start calling Dr Frost's office this week, hoping we can get some answers to surgery. Hopefully we will hear back from Dr Karlen's office about her biopsey results as well. I'll try to post some new pictures this week too. Have a great week! More later...............

Friday, May 26, 2006 0:09 AM CDT

For all the golfers and the ones that just want to have some fun the Kylie's Hope Second Annual Golf Tournement is August 19TH @ 1:00PM. More information and to sign up email Neil at gib2514@aol.com the sooner the better.
Thanks, Neil

Good evening. Today was such a very long day. The girls were absolute bears this morning. Kylie cried a good chunck of the morning and nothing I did helped make her feel better. I think she was in a bit of pain and is also majorly teething right now and was just plain miserable. Her nose is still draining quite a bit of bloody junk but we are faithfully giving her the blood clotting medication. Hopefully it will stop in the next few days. Ava is getting so big and wants to constantly be entertained. Kylie is so cute w/ her (when she's not mauling her). She tries to read books to her, give her the pacifier when she cries, (of course, Kylie is usually the one who took it out in the first place). Today in the stroller, Kylie was patting Ava's knee, than rests a protective hand on her. It's so cute to see. We have almost reached 11 weeks without a seizure, (knock on wood), the same week we reached last time, before we ended up in the hospital for 4 weeks. And although we are so grateful and overjoyed we have had this long break, not a day goes by that I don't hate this freakin disease. I hate all the meds I put in her mouth and all the side effects that come with them. With each dose, I wonder how much damage her teeth will really have, if her liver/kidneys are being damaged and how much cognitive slowing the meds are causing. She is still taking 5 anti-epileptics, plus a sleep aid, 2 steroids, a reflux med and a blood clotting med. I hate feeling like every single thing we do together is a therapy, from working on walking, songs to talk, working on a sippy cup, etc. I know that parenting is an entire life time of teaching but darn it, just once I wish she would do something on her own, that I haven't spent hours working on. Today was just so frustrating and I really don't mean to complain, because I do have one of the cutest kids ever.=) I just want something to come easy for her once. I just forsee a lifetime of struggles for her and I just think it really sucks. But, we'll get through it as we always do, slowly but surely, one afo in front of the other =), with lots of little stops along the way. I work all weekend and Neil works sunday, so the girls will be hanging out w/ Grandma Karen. I hope you all have a wonderful weekend and enjoy the weather for me. Please continue to keep Kylie and all of her friends in your prayers, especially for McKenna and her family. Much love- The Gibbons Family

Tuesday, May 23, 2006 12:46 AM CDT

UPDATE 11pm: We are home, resting well. Kylie finally started perking up around 3pm and we went for a few wagon rides. We left the hospital around 5pm and swung by Kari's game. She got a double for Kylie and they beat their rival, St Agnes. Go Bulldogs! We have spent the evening at home, resting. Kylie has been a little irritable, in a bit of pain, and has been having a runny bloody nose. We cuddled on the swing outside tonight, just Kylie and I, while Neil worked on his fountain/pond (a whole other story). =) We sang songs and snuggled in the warm spring breeze. We talked to God, rying to make deals that can't be made and praying for miracles for McKenna. Andy and Andrea came to swing for awhile. I am asking for extra prayers for my brother Andy, who got his orders from the Army. He will be leaving for training in March and then will ship out to Iraq June 07. He is a blackhawk helicopter pilot and a beloved member of our family. Praying to God to keep him swafe. Neil and I are both off tomorrow, so we are going to spend the day hanging out w/ the girls. Kylie said a new word today "duck", which we hope will be said more than once. That's all for tonight. Thank you for all of your warm wishes......

Hi all. Kylie is out of surgery and resting well. She has actually had a very hard time waking up from anethesia. She was up for 10 minutes a little bit ago, then crashed again. They aren't sure why she is so sleepy, but if she perks up and does ok, we get to go home this afternoon! Her sinuses were still open, the left side narrowed just a bit but the dr opened that one up again. She got her ear tube on the left side replaced and both her sinuses/ears washed and cultured. He didn't have a scope small enough to go down her trachea, so he biopseyed her sinuses instead. If the biopsey comes back negative and she still has sinuses issues, when she is a bit older he will try and biopsey her trachea again. If it comes back positive, we will at least know what the problem is. She does have thickening of her trachea and sinus cavities, partly due to all the infections and partly from her reflux. It will take about a week to get the sinus cultures back, so for the time being, we are off antibiotics! She has never gone longer that 2 weeks before getting another infection, so all fingers crossed. We happened to run into Dr Frost on the way back from surgery. He said he hasn't seen anything from Detroit, but it could be on his desk, as he has been out of town. He is going to check, so I said I would start bugging him after Memorial Day. I am praying this is our last hospital stay for a long time and that we can spend the summer at home. More later..............

Sunday, May 21, 2006 5:31 PM CDT

Hi all. We have had a busy few days. On friday, Laura (Ben's g-friend) and I took the girls to the hemocologist's, to have kylie's port de-clotted. It worked on the first try but the dr said there is a fibrin sheath around the cath, so this may happen often, and that we have to decide if it is worth keeping. Since her veins are shot, we plan on keeping it in case she needs iv access. I worked a double shift friday eve/night, and Neil brought the girls down for dinner. When I got home sat, my mom and I took the girls garage saleing, out to lunch, then I crashed for the afternoon. We are just about to go for a walk and grill-out at my parents. Kylie's surgery is still set for tuesday. We have to be at the hosptial at 630am, so it will be a long day. She will get a blood product before and after surgery, as well as an oral med she will go home w/. Hoping we are just in over night, but sometimes Ky has different ideas. That's all for now. Please continue to keep McKenna in your prayers, as her seizures are back. Praying for her miracle.......

Thursday, May 18, 2006 7:47 AM CDT

UPDATE: Homecare came out to draw labs today and couldn't get any blood. So, we spent the afternoon at Children's, had a dye study donw through her port, and a fibrin clot was found at the end of it. So, she had 3 pokes from an extremely rude tech, then saw Dr D for her pre-op. She has gained 2 lbs and grwn 1/2 in in the last 2 months, so we are done w/ the pedisure supplements. She thinks Kylie looks great and can tell how much progress she has made lately. Tomorrow, we will be spending the morning in the hemocolgist's clinic, trying to de-clot the port. Wish us luck!

Good morning. Thank you for all the wonderful Mother's Day messages. We spent the day hanging out with the girls, then headed off to my grandparents house. I worked monday, then doubled tuesday and worked the night shift, so yesterday was a long day with no sleep. We went out to lunch yesterday for Ben's graduation, then headed to Auntie Kari's softball game, where she did awesome. I had a meeting with my 7940 mom's group and had a nice time catching up with the girls. Kylie did great at therapy on tuesday and they are talking about restarting her pool therapy. They think she will be walking by this summer. I'm not as optimistic, but we will be working hard to help her do it. We have a doctor's appt at 3pm for Kylie's pre-op physical for surgery on tuesday. She still has a nasty cough, so we will see if we will be able to proceed w/ surgery. Homecare is supposed to be out today or tomorrow to draw labs, so I will have to get ahold of them later. Dr Frost's nurse is out of town, so I will be trying to get ahold of them next week to get Kylie's final PET scan results. Hopefully I will hear something by Christmas. =) As long as she continues to remain seizure free, we will holding off on surgery. We hope to get out and enjoy the weather today. The girls are going to spend the evening w/ Auntie Kari, while Neil & I play softball. More later and enjoy your day! Love Maria, Neil, Kylie & Ava

Sunday, May 14, 2006 12:49 AM CDT

The Woman in the Mirror......
By Cheryl Veenstra
February 2001
I saw an unfamiliar face in the mirror today. She caught my eye as I
rushed to start the day. I hardly recognized this woman. What had
changed in her eyes? She was no longer young, naive and viewing the
world through rose-tinted glasses. What had caused the worry lines
and thoughtful brow? How could she look so fragile and weary, yet
also determined and strong? Around some corner on the road of
life.......she had been shaken to the core of her very being.

There was a time when only tears and fears were reflected in those
eyes. A doctor's unexpected words, the future suddenly
uncertain......gray, shadowy images of the vague and scary concept
of her child coming into the world as "disabled". An incredible
journey began that caught her by surprise and would take her places
she never thought she would go. The journey had been long at times
and she had shed tears of pain and tears of joy. She'd had hopes and
dreams dashed in the blink of an eye. She'd asked the question WHY?
She'd had friends fail her and not know what to say or how to help.
She'd seen her child suffer. She'd cried silent tears into her
pillow at night. Tears of exhaustion and fear. Tears of helplessness
and longing. Tears of thankfulness and relief. Tears that are
choked back during the day, but are unleashed like floodwaters in
the safety of the night to wash away any walls being built up to
protect her heart. Nights of worry blurring into days of endless
responsibility. But then slowly, but surely, her broken heart begins
to heal and mend.

The same pity she had once felt as she watched a mother hold
her 'special child' close was now looking back at her in the eyes of
strangers. But a smile tugs at her lips as she suddenly realizes
that now she knew the secret! The hard-fought, carefully guarded
secret that was slowly revealed in the depths of her heart.....but
only after the tears and anguish of the first days and weeks of this
new life. The illusive truth that mothers of special children
discover as they take their first faltering steps down this
new path........It was okay. She and her child could survive, even
thrive! It was not as grueling and unforgiving a road as she had
imagined. The fog, confusion, despair and fear were being slowly
replaced by peace, acceptance, contentment, joy and gratitude. A
mother's unique, unconditional love changes the equation that may
look hopeless and tough from those outside, looking in. She will
fight for, live for and die for her child. These special children
transform those around them into different people. Stronger people.
Dare I say it......deeper people. Long gone are the days when all
they had to worry about was where to vacation or what color mini-van
to buy. They now struggle with life and death medical issues. They
must answer their child's questions about life's unfairness and
pain. What remaining strength and energy they have is spent trying
to make their 'family life' as normal and happy as possible.

A twinkle returns to the eyes of the woman in the mirror as she
takes a deep breath and remembers what she's been fighting for. How
very worthwhile this journey has been! This child is an incredible
gift and it is a privilege to be given the task of raising her. Her
child is beautiful and perfect in her eyes. She longs for her child
to be seen by the world through this filter of love, acceptance and
potential. Could others take the time to see past this little girl's
slower steps to see the life and love reflected in her eyes? Would
her child be able to see herself through the filter of contentment
that the woman has journeyed so long to discover?

Hope was rekindled as the woman's eyes grew brighter. The future
remained uncertain, but the incredible, protective love she felt for
her child threw a warm blanket over the cold, dark storm clouds that
used to threaten her very soul. As she threw open the doors of her
heart, she felt the warm sun on her face and she beheld a beautiful
rainbow of intense beauty and unmistakable peace. Hope still
comforts this woman who cries in the middle of the night. Love gets
her through each day. Faith takes her hand and leads her around each
corner and through each deep, dark valley. Peace soothes her heart
as she relinquishes control of their destiny to One wiser and all
knowing. Joy brings laughter and smiles to those tired eyes once
again. Each day is recognized for the gift it is.

I gave that woman a smile as I left her at the mirror today. I'll
see her again soon and I'm curious to see how she will continue to
change and grow. She's not the same young, carefree woman she used
to be, but that is okay. I like who she is becoming and I feel
comfortable in her life. The sun is shining, the day is brand new,
my child is humming and God is so good!

***Thank you to Amy for sharing this poem w/ me.***
To my dearest Kylie Jo-
Today I celebrate my 2nd Mother's Day, because you chose me to be your mommy. Thank you so much for picking me. I can not even begin to explain the love I feel for you and your sister. You are my breath, my tears, my everything. I never knew that loving someone like this was even possible until the day you came into my life. I would do anything for you and Ava. Last year was such a hard Mother's Day- you spent the whole day having seizure after seizure. This year, I am so thankful we are having a break from those icky seizures and are just dealing w/ a yucky cold. Thank you for loving me unconditionally and I will do my best to help you grow up to be the best person you can be. I love you sweetie! Love Mom

To my mom- Words can not even express my love for you. Aside from Neil, you are the one person who I know I can always count on, who loves my girls probably as much as I do. It pains me to see the saddness in your eyes when Kylie is so sick but comforts me to see how much love you have for her. Thank you for the endless babysitting hours, the many nights you have sat up w/ us through seizures, surgeries, vommitting or just feeling bad. You are such an awesome grandma to my girls and a great mom to Neil and I. We are truely blessed to have you in our lives. Happy Mother's Day! Love Maria

To all you moms out there- I hope your day is filled with giggles, smiles, tiny kisses, gentle sighs, sticky hugs and the love of family. Have a wonderful mother's day!

Thursday, May 11, 2006 10:29 PM CDT

Good evening. We have 2 sick little girls at our house. Yesterday, Ava woke up w/ a blood-curdling scream, for an hour straight. She fell asleep for about an hour, moaning the entire time. She woke back up, w/ the same scream, plus a fever. She seemed really sensitive to light, so of course I was freaking out that she could have meningitis. The dr agreed, so we brough her in. Her WBC was slightly elevated but she most likely just has a virus. If she still has a fever by saturday, she has to go back in. After tylenol and sleeping for 24hrs, she is much better. She does have her first cold/cough but it is not nearly as bad as Miss Kylie, who sounds like a barking seal. She has a horrible cold but is in great spirits. We have been nebbing her, so hopefully that will help. Seriously, 2 weeks of being healthy in this house is apparently a lot to ask for. We had Kylie's IFEP meeting today, which went pretty well. We set new goals fo her to work on over the next year. It was nice to see so many "met" goals that she has made over the past year. Slowly, but surely, she keeps plugging along. She reminds me of "The Little Engine That Could". =) She will continue to get OT 1x a week, PT 2x a month, the school teacher will come out 2x a month and speech 1x a month, all through the school district. She will have OT and speech 1x a week at Gillette and PT every other week at Gillette. So, basically, it will equal out to some sort of therapy 3x a week. This fall, we are going to try music class again and possibly ECFE. She is going to start going to day care every friday, just for the exposure to other kids. Everyone is in agreement that it will benefit her to be around older kids, so she can learn from them. This will also give me one day a week to spend solely w/ Ava. I think I may start ECFE w/ in in the fall as well. Throw swim lessons in there and we have a busy fall ahead of us. That is, if Kylie decides to cooroperate. We had all of this set up last year as well, but the seizure monster had a different idea. We are at week 9 and getting ervous. She was doing something weird w/ her eyes tonight and I first thought it was a seizure but I actually think she was trying to wink. =) Big thanks to my mom and sister, who sat w/ the girls tonight so I could play softball. I am so sore, I will be lucky if I can get out of bed in the morning. My knees are not what they used to be. We have an early morning ahead- we have stuff at my girlfriend's house for the Woodbury Garage Sales, so we will be up early. We were out there this morning and found a mini jungle gym /climber for Kylie to work her PT skills on. She is getting stronger every day. Well, that's all for tonight. More later......

Tuesday, May 9, 2006 10:34 PM CDT

Good evening. Another gorgeous day! We had therapy this morning and they think Kylie is getting much stronger. So much stronger, that starting in June, she will have PT every other week instead of every week! Speech will instead take that timespot, but it is a step in the right direction. Day one of the bottle/pacifier wean is going well. She has not used her pacifier at all today and bottles have been limited to naps/bedtime. She is showing more interest in the sippy cup, so after a few days of no pacifier, we will really be pushing the sippy cup. We have noticed she has a pea-sized lump on the back of her head, moveable and gel-like. Hoping it's just a lymph node but who knows- TS can be totally unpredictable. If it's still there next week, she has a pre-op physical set-up anyways. Her and Ava both have runny noses, so we are crossing our fingers they stay as just colds. This evening, I took the girls to my brother Andy's swearing-in ceremony, for Richfield Police Dept. We went to dinner after and both girls were very well behaved. Thursday, we have Kylie's IFEP meeting w/ the school district. We will set up goals for Kylie to be working towards over the next few months. It's hard to imagaine but at this time next year, we will be talking about pre-school! Time is just flying by. But for some, there isn't enough time in this world. Kylie's very best friend, McKenna, is losing her battle w/ Alpers disease. She is having daily seizures and is starting to loose her vision. This is the same disease that took her brother's life in August. I ask you all to pray for strength for this family, as well as for this sweet girl's miracle. This family's story really makes me question my own faith. I don't understand why this is happening and I don't understand why she can't be healed here, on earth. Please keep them in your prayers. Much love- The Gibbons Family

Sunday, May 7, 2006 5:42 PM CDT

Hi all. What a beautiful day for the walk! We even got a bit sunburned. We had a great turnout and raised $55,000 for research for TS. Our group raised $4,583 and came in 3rd place. Thank you so much to those of you that came out to walk and to those of you who sponsered walkers. It was so wonderful to see how much support Kylie has behind her. Our focus now is on the 2nd Annual Kylie's Hope Charity Golf Tourney, which will be held saturday, August 19th, at Como Park Golf Course. We had a blast last year and hope to do so again this year. Please email me for further information. Kylie is doing great. We have had 8 weeks without a seizure! (Knock on wood!) It has been such a blessing to have life return to somewhat normal. Her last strtch was 11 weeks, so we are starting to get a little uneasy, watching for signs that they are returning. Praying so hard they will stay away this time around. She is still on 5 seizure meds, as well as 3 other meds for sinuses/reflux, so of course we worry about the damage the meds alone are causing. But, when she is not having seizures, she thrives! Although still not walking, her legs are getting so much stronger and we are hoping she will do so by her b-day. She walks a little bit like Frankenstein, so we still have a little work to do. She is making new sounds everyday but still not carrying on conversations. She will be starting speech therapy in the next few weeks. She is getting into absolutely everything, (tonight she figured out how to take the canister off the vaccum, eating the dirt inside). I am off all this week, so we are attempting round one of saying good-bye to the pacifier/bottle. We are really going to be working hard on the sippy cup, so if anyone has any ideas, feel free to share them. Ava isn't real attatched to her pacifier, so hers may be leaving too. I am stocking up on ibuprophen! Kylie loves her new Seseme Street electric toothbrush, which was something I though we would have to fight her on but she opens right up. Ava is still pretty much a little ball of mush =), but is changing so much everyday. She is very smilely/giggly, (when she's not screaming!), coos and babbles constantly. She LOVES looking at Kylie, and doesn't even get mad when Kylie is poking her face or giving her mouth the "fish hook". We are working on being gentle and having manners but we have a ways to go. Well, I work a 12hr night shift tonight, so I should get ready to leave. This is my first overnight away from Ava, so I am a little sad. =( I'm sure I will get over it though. A huge thanks also to my gram and gramps, who ran the merchandise table today at the walk. Hope you all had a great weekend! Much Love, Maria, Neil, Kylie and Ava

Saturday, May 6, 2006 11:01 PM CDT

Good evening. For all of you joining us at the TS walk tomorrow, registration starts at 9am and the walk will begin at 10am. Meet at the picnic grounds at Como Park (the newer area), across from the softball field and pool. The money raised will be turned in at registration, so make sure you turn it in under Gibbons/Ueland. They will tally up the final total to see which group/individual raised the most money. Sounds like it will be a beautiful day tomorrow and we can't wait to see you there. Look for the pink banner w/ Kylie's cute pic! There will also be brochures at the walk w/ information about the 2nd annual Kylie's Hope Charity Golf Tourney, which also raises money for TS research. See you in the morning! If anyone gets lost or has questions, my cell is 651-329-0427.
Love Maria, Neil, Ava and Miss Kylie Jo

Thursday, May 4, 2006 6:18 AM CDT

Good morning. Our day has started WAY too early. Kylie was up around 4:30am and Ava followed about an hour later. I hope nap time is soon! Kylie had her speech eval at Gillette and obviously, she is behind. They said her skilss are pretty scattered across the board but is mainly between 12-15mo. That is where the rest of her development falls into, so at least she is consistantly behind. She even got to play on the computer, working on some speech games, which she loved. She looked like such a big girl sitting in the chair, pounding away on the keyboard. Her PT thought she will be walking soon, as her legs seem to be getting stronger. I don't see it but hey, I'll take it. We have been working on crawling up and down the stairs, and we bought a little shopping cart she can walk behind. Let me tell you- my back is killing me from all of this "therapy"! Tuesday evening I worked, so Ava went to hang out w/ grandma and Kylie & Neil took a bike ride to his Aunt Jessi's house. Yesterday, the girls were crabby most of the morning, w/ Ava screaming a good chunck of the day. I took them on a long walk, which finally calmed Ava down and she fell asleep. This lasted for 20 minutes, when Kylie woke her up. In all, it was a long day. Beautiful weather though. It was nice just to be outside. Kylie has therapy this morning and hopefully we will get another walk in. Neil and I start our softball leagues tonight, so I'm sure we will both be sore tomorrow. I work all weekend and we have the TS walk on sunday. It sounds like it should be a nice day. For those of you going, registration starts at 9am and the walk is then at 10am. Thanks to my gram and grandpa, who will be selling merchandise for the alliance, as well as to all of you who will be joining us. We can't wait to see you all! Much love- The Gibbons Family

Monday, May 1, 2006 8:04 PM CDT

The doctor called today and although Kylie does not have CF, she is a carrier of CF. She is one of the 1 in 25 caucasions that are carriers. So, even though we don't have to worry about her, our concern returns to Ava and any future children we may have. We see the genetisist in June, where Neil will most likely be tested to see if he is a carrier. It is most likely that I am. At least one of us has to be a carrier for Kylie to be one. So far, I'm not real impressed w/ our gene pool.

Sunday, April 30, 2006 10:59 PM CDT

Good evening. We had a pretty low key weekend, aside from Kylie's friday night episode. She seems to have recovered and since we didn't see any obvious signs of seizure activity, we are assuming (and hoping!), it wasn't related to seizures, just to those darn sinuses of hers. May 23rd can't come soon enough! Kylie hung out w/ her grandma all day yesterday, while Neil and I did some serious spring cleaning. We were exhausted this morning and had a family day in bed w/ the girls, napping, reading books and trying to escape from the close encounter w/ Miss Kylie. She loves to rip my glasses off my face and if I scold her, she gives me kisses, just like she does if we scold her for hitting, pinching, etc. The word "no" has not yet entered her vocab. I took her grochery shopping, while Neil hung out w/ Av. Both girls went down for the night at 7pm, so it will be an early morning for me. We don't have a lot planned this week, aside from therapy on tuesday, where Kylie will have another speech eval and therapy on tuesday, where we will meet w/ the school teacher. No doctor appointments (knock on wood), so I am excited for that. Neil and I both start our summer softball league on thursday, so it will be great to see my ladies and for him to see his friends. Next sunday, (the 7th, is the TS walk and we are praying for nice weather! We can't wait to see some of you there and thank you so much to those of you who pledged Kylie. Your support means so much to us, as we try to help find a cure for this horrid disease. Neil and I are speaking at the walk, (or I will be), so I suppose I should come up w/ something to say. That's all for tonight- more later. Much love- The Gibbons Family

Saturday, April 29, 2006 0:59 AM CDT

UPDATE: Sat 930pm: Kylie had a much better day, is keeping things down and although a bit whiny, seems mostly back to herself. So, for the time being, crisis adverted. More later......
Good evening (or morning). Kylie has been vomitting for the last 6 1/2 hours, despite the zofran we gave her. We are still working on her 8pm seizure meds and are not having much luck getting them down. She had a very restless night last night, then slept until we woke her up at 10am this morning. She had a temp of 101.6 and it stayed around 100 after tylenol. She had an episode after dinner where she was whiny, so we put her on the floor to play and she was super floppy, then fell asleep. She woke back up, then started vomitting all over me. =) We were questioning whether or not she had a seizure that made her fall asleep or if she was just super nauseous. I put her in the tub to wash her off. She played with toys for a bit, then face planted into the water and we could not get her to wake up for awhile. I think she fainted but I'm not sure. She then continued to vomit all evening. She is acting the was she does when she has a sinus infection. She finished antibiotics on tues and is set for surgery in a few weeks. I spoke w/ the ped tonight and she started her back on Augmention for the next three weeks. If she continues to vomit and we can't get her seizure meds in, she will need IV fluids and IV zofran. If that's the case, I'm going to see if we can get it through homecare, so we don't have to bring her into the ER and expose her to everything there. But, if we can't get her meds in, she's going to start seizing her little butt off and we will end up there anyways. This poor kiddo deserves a break so badly. Hoping for a better day and that the seizures stay away. More later..........

Tuesday, April 25, 2006 9:33 PM CDT

Good evening. We have had a busy few days since we have been home. Saturday evening, I went to a wedding reception while Neil sat home w/ the girls, (lucky for him, they both slept the whole time). Sunday, they were up bright and early, so we decided to spend the entire day outside. Neil put in some new windows (we are doing them one by one, as the old windows were the originals (era 1946). I did yard work, Kylie had a good time in her swing and Ava loved looking at the trees. Auntie Kari hung out w/ the girls so we could get some stuff done. I took both girls w/ me grochrey shopping for the first time yesterday, an experience I am not excited to repeat anytime soon. Kylie then went to see her friends at daycare, while Ava and I got some one-on-one time. We then went to Auntie Kari's softball game, which was VERY chilly. They won- Go Bulldogs! Today, Kylie had OT/PT at Gillette. We worked all day at using a sippy cup, which isn't going over real well. I am bound and determined to get the bottle away by summer. She practiced more walking today and even walked by just holding my fingers instead of me holding her hands. She is getting stronger everyday but it is such a slow process. TS is definately teaching the art of being patient. I have never been a really patient person and it is so hard to sit still and watch the slow progress Kylie is making. But she is making progress and that is what we have to focus on- the good things. After therapy and a good nap, I took the girls and dog for a walk. Kylie rode her bike and had a great time dragging the tips of her new shoes on the pavement. We saw Dr Karlen this afternoon and we are up for more surgery. I have to call on thursday to set it up for 2-3 weeks from now. She is having her sinuses washed out, cultured and new holes drilled if needed. She will have her ears washed out and possibly new tubes put in. They will also be doing a bronchoscopy, where the dr will cut a tiny piece of her trachea out for a biopsy. The biopsy will show if her cilia is working correctly. He said he is hoping not to give her a new diagnosis (us too). If her cilia is not working correctly, there is no cure- just continue the same course of treatment we have been on. She would also be put on an antibiotic 1-2wk long term to prevent infections. He said he is pretty discouraged she had an infection so soon after the IV antibiotics were done. But, if we are even going to consider brain surgery, she definately needs to be free of infection. So, hopefully this third surgery will help our pumpkin feel better. Dr Frost's office called and said no labs for 3 months! This evening, Neil took Kylie for her first "real" bike ride (a bike trailer hooked to his bike)- she loved it! I met my mom and Bridget for dinner- it was nice to have an "adults only" meal. Thanks ladies! Tomorrow, homecare is coming to flush Kylie's port, we are going to pick-up the girls' pictures, and we are taking a trip to St Agnes to visit w/ a special group of kids, who made Kylie their Lenten project. That's all for now- thanks for checking in w/ us! Much love- The Gibbons Family
PS 6 1/2 weeks w/o a seizure! (knock on wood!!)

Saturday, April 22, 2006 2:36 PM CDT

Hi all. It is SO good to be home! We are definately Minnesotans for life. The girls were again great on the trip back, aside from Kylie ripping the molding off the airplane window, (which is now under one of the seats). We think her ears are still bothering her, as she was wide awake from 1am-330am and was restless for the rest of the night. Grandma was the lucky one to bunk w/ her, so she will probably be turning in early tonight! I was so excited by yesterday's news, I didn't mention this are preliminary results. We still need the ok from Dr Frost and Dr Dunn. The grid would be put in first and if all goes well w/ that, the tubor would come out after. Our main goal now is to her her infection free. We see Dr Karlen on tueday, so we hope they have come up w/ a plan. For those of you who are easily grossed out, read no further. I am now going to tell you about the
"great poop escapade". Last night, Kylie and i took a shower. I was not wearing my contacts or glasses, and am pretty blind w/o them. So, Kylie was sitting in the tub, w/ her back to me, playing w/ the shampoo bottles, (or so I thought). I thought the water was starting to smell funny, sort of like a septic tank, so I turned it off. I got out to dry off and reached down to pick up the shampoo bottle. Except, it was not a bottle- it was a hunk of poop. I started yelling, "oh, gross." Neil comes in, wondering what's going on- I tell him, and he asks what's in her hand. You guessed it more poop. He gets mad, leaves the bathroom, yelling "I can't believe you let her play w/ poop!" I'm in hysterics, laughing and he is getting more and more mad at me- like I thought it would be a great night if I let Kylie play w/ her poop. I finally put my glasses on, pick her up out of the tub, and she gives me this huge shit-eating grin- literately. The poop was oozing out of the gaps between her teeth! By then, I was so grossed out and was gaging but laughing harder than I ever had before. It took awhile to get her minty fresh and I won't be kissing her anytime soon. I guess it is time for me to get lasik. Now that you are all completely grossed out, have a great weekend! The Gibbons Family

Friday, April 21, 2006 2:11 PM CDT

Hi all. Well, we got GREAT news today. The doctor here, who is a world-wide known neurologist, said Kylie is an EXCELLANT candidate for surgery! She has 2 large tubors, one on the right frontal lobe and one on the left frontal lobe. She has a few scattered other tubors but he said aside from the frontal area, her scan looks basically "clean" (when have we ever heard that term associated w/ her brain?) The stuff they injected her with highlighted the "hot spot", or the tubor causing the seizures. The hotspot was the right frontal tubor and according to most of her EEGs, that is where most of the seizure activity is coming from. So in other words, if we do surgery, they could take out the right frontal tubor and hope that it would take care of the seizures and that any other seizure activity could be controlled by meds, (and hopefully by fewer than the 5 she is on). Do dare imagine the possibility of a "normal" life? Although, we still will have to worry and watch all of her other organs that could grow tumors, especially her kidneys. But we are so excited! It will take a few weeks for Dr Frost's office to get the results, then she would be presented to surgical confrence the following tuesday. It will be 6 weeks tomorrow since her last seizure and if she continues on this path, we would postpone any surgery. But if (when) the seizures start acting up again, we would go for it. Thank you all for your continued prayers throughout our journey and high-fives to Kylie's angel friend Drew- good work up there buddy! We are now at the Marriott, loving the comfy beds and we will be taking Kylie swimming after her nap- her favorite thing to do! I will post some new pictures of the trip when we get home tomorrow. Love you all! The Gibbons Family OPPS! I forgot to add- the tubor is in front of the motor strip (he thinks), so she wouldn't lose function!

Thursday, April 20, 2006 1:55 PM CDT

UPDATE 815pm: Hi all. The testing went well and Kylie did great w/ the sedation. We gave her zofran before the scan, so she did not get sick after. Tomorrow her scan is at 8am and then we are hoping to talk w/ the doctor after. He may give us preliminary results but if he is not available, we have to wait until Dr Frost's office calls us. We have met a lot of neat kids here, most w/ stories not unlike our own. A boy in the waiting room really like Kylie- he kept commenting on how cute she is and how lucky we were to have her. Yep- she's definately a keeper! We are moving to the Mariott tomorrow after the scan (thanks Gramps!), and then we fly out on saturday morning. I pray the weather keeps up- I'm definately a paranoid flier and it is supposed to storm this weekend. More tomorrow after the testing is complete!

Hi all. Kylie is in the scanner right now and they are just injecting the radioactive dye. They couldn't use her port fot the scan, so they had to start a peripheral IV. After 3 pokes and many tears, they got one started in her ankle. Being here is so overwhelming- seeing all of these sick kids and reaalizing that one is ours is heartbreaking. She looks so little in the scanner, sedated and tied down to the machiene. The scan itself takes 1 hr, 50 min, so we should be done about 430-5pm. (4pm MN time) The tests they are doing today are actually for research and tomorrow is the TS test. They will hook her up to EEG in the morning. We may be getting a hotel room tonight, as we are all sore from our sleep last night. Neil actually slept in a pull-out chair, directly on the springs (it had no mattress or pad). If we ever win the lottery, the first thing we do after fixing up 7940 is buying beds for the Ronald McDonald house! Well, I will update more after the scan is done. Maria

Wednesday, April 19, 2006 7:02 PM CDT

Hi all. We made it to Detroit and we are staying at the Ronald McDonald House. We may be moving to a hotel tomorrow or friday, depending on how Kylie does after the sedation. First off- we heard back from infectious disease today and NO CYSTIC FIBROSIS! Who-hoo! Now we only have to worry about possible brain surgery. =) The next step will most likely be another sinus surgery and a biopsy of the sinus cavities. We see ENT next week, so we will know more then. As for our trip, the girls were both angels on the flights. We had to change plans in Chicago and they did great. We even got comments from other passengers on how well they did. I guess we trained them well! =) Kylie's first scan is tomorrow at 12pm, so I will updte more after the scan. There is limited access to the computer here and our laptop isn't getting a signal, so I will update the best I can. Both girls were up for almost the entire night last night, so I am hoping tonight will be an early one. We are crossing our fingers that accessing her port tomorrow will go a bit smoother than the last time. I talked to Dr Frost's nurse last night and she said it will take 2-4 weeks to get the results back from Detroit, then we will go from there. More tomorrow...........

Wednesday, April 19, 2006 0:41 AM CDT

Good evening. This will be quick since I should be in bed. Our flight to Detroit leaves at 930 am, so we will be leaving at 7am. Yesterday, we had a play date w/ McKenna- it was so good to see them and we hope to get together again when we get back. Kylie needs to learn so manners before then- hair pulling is not allowed! I took the girls for a quick trip to the mall- we had to get Kylie some shoes that actually fit over her afos. We found some very cute ones. Today, she had therapy at 830 am, which she did great at! She is really getting into the walking thing. Then, we went to visit at my work for a bit and headed up to 7940 to see Caroline. The nurses could not believe how big Ava has gotten since we have been home ( apparently, Neil thinks it's ok to feed her 9oz at once when I am gone. 9oz! That's 2x the amount she usually gets! After the visit, we went to lunch, then to great-grandma's so she could meet Ava, as they are now home from FL. We also saw the ped, who gave Kylie the good ahead for sedation. She is concerned about all the infections she has been getting and thinks it may be one of two things- either she doesn't have cilia to keep the germs out or maybe being on antibiotics for so long has disrupted her natural ability to fight infection. She wants a biopsy of her sinus cavity w/ her next surgery. Ok, off to bed I go. We will update when we get to Detroit. Wish us luck! Love you all-
The Gibbons Family

Sunday, April 16, 2006 11:37 PM CDT

*****NEW PICTURES!************Good evening. I hope you all had a wonderful Easter and that you got to spend the day with your loved ones. This Easter was much better than last year. Kylie didn't spend the entire day seizing and I didn't feel like I was going to fall apart at any minute. We woke up this morning and opened Easter baskets. Kylie went wild over her new pig bubble blower. She got mad when Neil brought in into the other room to put batteries in it. We went to church w/ my parents and sister- not Kylie's favorite part of the day. She was pretty whiney and spent most of the time pulling the hair of the girl in front of us, pulling the buttons of the lady behind us, or trying to pick her grandma's nose. =) We sent her to grandma's to nap while Neil and I went over to his aunt's house to meet her fiance and to hear about the wedding plans. Welcome into the family Lion! You are in for a wild ride!=) We are excited for the wedding in June and are crossing fingers for nice weather. We then spent the afternoon at my parents and caught up with the family. We took the girls for a walk in the beautiful sunshine, threw the ball around a bit, then took the girls home, where they both crashed for the night. Kylie was not herself today and I am praying SO HARD it's just from the ear/sinus infection and not something to come. She was pretty tired and crabby at times. I'm trying to ignore my gut feeling that the seizures are working their way back into our lives, just when we are getting comfy again. But, she has had a lot of problems with them when her sinuses act up. We should get the culture of her ear back tomorrow and hopefully the antibiotic will cover whatever it is. We have a busy week ahead of us- Tomorrow, we are going to Children's to get copies of all of Kylie's medical records. We are bringing them with us to Detroit, just in case something comes up. They will probably exceed the 50lb weight limit for the suitcase but Neil can pack light. =) We are going to try and pop in to see Caroline, then we are going to go have a playdate w/ Miss McKenna. Kylie can't wait to see her! (And I can't wait for a little adult conversation). We are plannning on going to Auntie Kari's softball game in the afternoon, if the weather holds up. In the mean time, I need to connect w/ the people in Detroit, her ENT, infectious disease and her ped tomorrow. Better charge up the cell phone. My grandparents are flying home from FL tomorrow and we can't wait for them to meet Ava. We will be visiting them on tuesday, after Kylie's therapy. Other than that, we are busy packing and getting ready for our trip. I am so nervous- nervous to fly, nervous for Kylie's sedation, nervous to get the results, nervous to find out if our lives could potentially change forever. Hoping the CF results will be back too- they weren't in as of saturday. So, please keep us in your prayers this week, as well as for all of Kylie's friends. Thank you all so much for your love and support. Much love-
Neil, Maria, Kylie and Ava

Sunday, April 16, 2006 2:37 PM CDT

Happy birthday Grandma Karen! And happy Easter to you all. Praying for miracles..................

Saturday, April 15, 2006 2:27 PM CDT

Happy saturday. So much for a healthy Easter- Pink eye for me and a fever, ear & sinus infection for Kylie. =( Apparently she has probably had this for a few days but our thermometer isn't accurately reading- bad mom. Antibiotics for 10 days and they cultured the drainage from her ear- last time it was staph. They wanted to put her on IV or oral cipro to make sure the pseudomonous in her sinuses is gone but that could affect her seizure threshold and after 5 weeks w/o a seizure, we aren't going there. So, follow-up w/ the ped, ENT and infectious disease before we leave for Detroit on wed. The cultures should be back on mon. The question is- WHY does she keep getting all of these infections? All of her immune deficency work-up was negative but she has had a continous infection of some sort since last March. She just came off IV antibiotics after about 3 months of being on them and the antibiotics themselves were messing up her blood levels. Hoping we can get to the bottom of this soon. ID checked today and the CF results still aren't back. I had to call in sick tonight, which I hate since I have only been back since last monday but I am contagious for 24 hrs. I'm assuming I picked up the pink eye at work, since the girls don't have it (yet). I am doing a complete disenfectant job on the house. More later and enjoy the gorgeous day!

Friday, April 14, 2006 1:22 AM CDT

Good evening (or morning). I just got home from work, Ava is snuggled up w/ Neil and Kylie is having a sleepover w/ Grandma and Grandpa. Almost 5 weeks w/o a seizure (!) and we are crossing all fingers and toes they will stay away. We are seeing that she has a lot when her sinuses are bad. She has been off the IV antibiotics for a week now and we are thinking the sinus infection is back- hitting her head, green nose and her face looks a little puffy. I am so reluctant to call her ENT until we get back from Detroit because I'm afraid he will cancel the trip and do surgery again. I may see if we can get her on something oral or if he can peek at her before we go. We are supposed to see him when we get back anyways. Besides the ongoing sinus issues, she is doing awesome. She is talking a lot more, although we have no idea what she is saying. Lots of different vowel/consanants, different pitches of her voice. We even heard her reading to herself in her crib yesterday. She is starting to put everything in her mouth lately, which she has never done before. She even took a bite out of a bar of soap today and proceeded to chew it like it was candy. Apparently, we will never be washing her mouth out w/ soap- she likes it too much! It was so funny because as she was laughing, bubbles were coming out the side of her mouth! Neil went around the house tonight and made sure it was Kylie proofed. She had therapy at home today w/ our favorite therapist Angie. Hse brought the PT gal w/, who is going to start working w/ Kylie on a regular basis. We need to get this kid walking! We are going to have an IFEP meeting on May 4th, where she will be re-evaluated. She is also going to start having speech. I am excited to have more therapy added, so we can help our peanut out as much as possible. I miss her tonight. =) She is just the light of my life and I love her to pieces. of course, Ava too. =) Ava had a good day, with minimal crying and lots of smiles. We are really trying to decide what to do about the mumps outbreak, especially since we will be flying next week. We could get just the mumps part of the MMR for Kylie but the ped is worried it could cause a high fever and hence, seizures. We need to decide soon. I am also starting to freak out a tiny bit about the trip- during one scan, she will be sedated for 4 hours. She does horrible w/ sedation and I'm so worried the scans themselves will start the seizures up again. Plus, being so far away from our doctors puts us out of our "comfort zone". The farthest from home we have traveled since she was born was to a cabin and hour away and that was terrifying. =) I'm sure everything will be fine- I have just turned into a bit of a worry-wart. Today is the one year anniversery of when her seizures became uncontrolable- Good Friday was not so good. We pray that we can have peace this Easter, and are avle to enjoy the love of our family outside of a hospital. Please keep our little friends Caroline and Jess in your prayers, both who may be spending Easter in the hospital. And of course, for the miracles of all our little friends, especially Miss McKenna. More later- Maria, Neil, Kylie and Ava Grace

Tuesday, April 11, 2006 1:21 AM CDT

Hi all. What a beautiful day yesterday! The warm weather, birds singing and flowers popping up all over are such a refreshing change. They all are signs of hope- we are hoping spring is "our season". Sunday, the girls wanted to sleep in but we made it to mass. Ava was quite the lady but Kylie was not happy about being there. She spent most of mass in the back, hanging out w/ Grandpa. Later the evening, we went to McKenna's benefit- what a turnout! It was awesome to see such an out pouring of love for that sweet girl. We caught up with some old friends and met some new ones. Kylie was again freaked out by the Easter Bunny but in all, had a great time. Monday, homecare came out and drew labs. Kylie was not happy about it (they drew blood from her toe) and even cried when he listened to her heart and lungs. I think the ER experience last week is still on her mind. We should get the results back later today. Kylie went to daycare w/ Grandma, while I got some good snuggle time w/ Ava. She is so much calmer and happier when all the attention is focused on her. I worked during the evening, while the girls hung out w/ Grandma and Neil. I should turn in, as I have to be up in a few hours to start the day. We have therapy at Gillette at 830am and then a doctors appt at 10am. We are hoping to get out to walk but it will most likely be raining. We are going to talk to the therapists about stepping up her therapy, as I don't think she is getting an adequate amount. A lot of it has to do with her being in the hospital so much but these 1/2 hr appointments seem like they need to be longer. We still haven't heard back about speech therapy, so I will be working on that too. Wed I am taking the girls to get their pictures taken. Please send up some prayers for our friend Katelyn. She had a brain tumor, which was removed but grew back, had it removed again and now it may be back again. Praying hard for her miracle. Have a good night- The Gibbons Family

Saturday, April 8, 2006 9:59 PM CDT

Good evening. We are having a late night party, as both girls took late naps and are up, raring to go. Kylie is feeling so much better today. Yesterday, she was still pretty sleepy and feeling blah. Neil ended up working late, so my parents and brother came over for dinner and hung out w/ us girls. Ava spent most of yesterday screaming but has had a much better day today. Kylie got her AFOs yesterday and is doing pretty good with them. It's going to take her a bit to get used to walking with them, but she really stands up taller with them. Today, I took the girls to have "lunch with the Easter Bunny" at the neighborhood playground. Grandma Karen came with and we met up w/ my good friends Jody, Nicole, baby Noah and Grandma Jane. =) Kylie actually sat on the Easter Bunny's lap- it took a bit but she did it. I got a cute picture of the girls that I will post later. We also went in the bouncer and Kylie worked hard at walking in the gym. A small snafu occurred when Kylie fell out of the stroller on her head but she did it with such grace and without tears. After the party, we went for a long walk, then came home to enjoy the beautiful weather. Tomorrow, we are going to church in the morning, then to our good friend McKenna's benefit. We are praying for miracles daily for our beautiful girls. It was a year ago Good Friday when we realized our battle with TS was just beginning. Kylie had great seizure control until then but then they started coming so frequently and right after Easter, we ended up in the hospital in what would be the start of many frequent, long hospitalizations. I remember praying for an Easter miracle that never seemed to come. This year, we are praying for an Easter without seizures- it has been one month today since her last one. This year, we will also celebrate the miracles that God has given us- most noticable- our precious Ava Grace- but also, the miracle of each smile Kylie gives us, her strong will and fighting spirit, for the things she CAN do- crawling, walking w/ help, saying da-da, reading books and lighting up the life of each person she meets. Kylie is truely the best miracle I could ever had asked for. We also are praying SO HARD for our friend McKenna's miracle. This special little girl deserves the biggest miracle and I ask all of you to pray she receives it. She has such a special family and they deserve to have a lifetime to spend with her. McKenna- we can't wait to love you up tomorrow! Have a good Sunday- Much Love- The Gibbons Family

Thursday, April 6, 2006 8:42 PM CDT

Good evening. Today was a better day. Kylie did throw up all over Grandma Karen this morning when she woke up but the day got better. She had a fever early this morning but otherwise, it was normal all day. She is still pretty tired and lethargic but she should feel better soon. Infectious disease called today and said from her lab work, it looks like she has somewhat of a bacterial infection somewhere, most likely in the sinuses. Her hemeglobin and kidney function labs were also off but they think it is from being on antibiotics for so long. So, we are off the antibiotics (yeah!) and we deaccessed her port again tonight. The skin around it is super red and irritated, so it will be a nice break to have it out. Keeping our fingers crossed she will drink more tomorrow. Dr Karlen said from an ENT standpoint, she looks great. If she does continue to spike temps through the weekend, he wants to do surgery next week. He would again go into her sinuses, open the hole if need be, wash them out and take more cultures. Praying we won't have to do that again. We want to stay home! Otherwise, we follow-up in 3 weeks. Infectious disease also said the lab that is doing the CF testing called to ask some questions. So far, they aren't finding anything but the testing won't be complete until next week. Again, fingers crossed! I got my biopsy results back and of the 4 they took, so were the very earliest stages of cancer but they got all of it. I go back next week to get stiches out and then follow up in 6 months. We cancelled therapy this morning and spent most of the morning relaxing on the couch. Sue baby-sat for us this evening while Neil, Ava and I took his mom out for her birthday. Tomorrow, Kylie gets her AFOs put on. I am planning on updating pictures this weekend. We are hoping it is nice out so we can go for a walk. On sunday, we will be attending McKenna's benefit (www.caringbridge.org/mn/drewolson). It should be a great time and we are looking forward to seeing Kylie's good friend. I want to say a huge thank you to the Easter Bunny (aka Sarah's mom) for the beautiful quilt for Kylie. She loves it! That's all for tonight. Please continue to keep Kylie's special friends in your prayers. Much love-
The Gibbons Family

Tuesday, April 4, 2006 5:09 PM CDT

UPDATE #3: 1020pm- Just got back from the ER, have been there since 230pm. Dr Frost's office got involved, heard about the plan and said "No way". They said she needed IV fluids before she got too dehydrated and started seizing. Also, one of her meds she is on she HAS to be hydrated w/, so off to ER we went. We got in a room around 3pm and thehad a horrible time accessing her port- didn't happen until 6pm. They thought it was clotted, had 4 different people try to draw blood off it and finally, the "one more try" worked. They tried 2 peripheral IV sticks- no go. So, she is accessed once again. They were trying to do a CT w/o sedating her but she was not cooperating so we just skipped it. We had they option of staying the night to continue the fluids but we chose to go home and if she needs fluids again tomorrow, we are going to try and get homecare to do it. She does not need to be exposed to any more stuff in the hospital. All of her labs came back relatively normal and we are just waiting for the blood cultures. We had awesome nurses tonight, so the stay wasn't too bad. One thing that did make us laugh- Neil tried to give Kylie ice chips for the first time and it didn't go so well. She hates anything cold but he gave them to her anyways. She got a sour look on her face and then smacked Neil across the face. =) We are snuggling on the couch now and are going to watch a movie. We have therapy in the morning and then see Dr Karlen tomorrow afternoon. Most likely we are dealing w/ sinus issues again or possibly a virus. So good so far on the no seizures- fingers crossed...........
UPDATE #2: Just heard back from ID again and they spoke w/ ENT. Instead of sedating her for a CT, he would rather sedate her and go look in her sinuses, culture them and do surgery again to opne them again if need be. They also only want her port to accessed only for her blood draw today and then to be left deaccessed, to prevent and infection from growing there. We see Dr Karlen tomorrow, so we will know more then. More later......
UPDATE: Wed 1140am- Kylie spiked a fever this morning of 104.6. She vomited all her seizures meds up, has been moaning and is miserable. I called her ped to see if it could be a reaction to her polio vaccine and she said no, it's probably just viral and to alternate tylenol w/ motrin. She can't have motrin because of the von Willdebrands, so tylenol it is. Homecare called at that point and I told them what was going on. They called infectious disease, who called me and said they are going to come out and draw labs, including blood cultures and are going to order a CT scan to check her sinuses again. They are going to get in touch w/ ENT and see if anything else needs to be done. Kylie has not had a seizure for 3 1/2 weeks, so please pray HARD this doesn't set things off again. More later..........
Hi all. What a beautiful sunny day! We are getting ready to go for a walk but I will update quick. I went back to work yesterday and had a good night- very busy but the night went by quickly. Homecare came yesterday to draw labs- Kylie's white blood count is low, so everyone is in agreement she will come off antibioitcs tonight but will probably go on something for long-term after seeing Dr Karlen on thursday. We had a bit of a snafu w/ her port sunday night- apparently, the needle wasn't in place correctly and all of the saline, med and heparin went under her skin instead of in the port. It was pretty painful for her but after the swelling went down, it was better. Today we saw Dr Delahunty for the girls' check-ups. Kylie got her polio shot but we are in agreement not to give her the MMR. Maybe sometime after she is 2 but she feels that giving it may do more harm than good by causing a big seizure. She is behind on a few other shots but the dr is checking w/ infectious disease to see if any of the titers they drew show she is immune to those certain diseases. If she is, then she will be done w/ her shots until she is 5. As for Ava, we made the decision not to vaccinate her until she turns 1. We have met too many kids who started having seizures or have neurological damage from their vaccinations. I am totally for vaccinations but once you have one seizure kid, you will do anything to try and prevent another. The girls are both in the 95th percentile for head circumfrence, the 90th for height (Ava is 23in, Kylie 33in) and for weight, Miss Piggy (Ava) is off the growth charts at 13 lb, 11oz, (as was Kylie at that age) and Kylie was 23 lb and in the 50th percentile. They were both healthy today. The dr wants Kylie to see a ped dentist, to hopefully prevent damage from all the meds she is on. Also, we are going to start speech therapy. I should know more specifics in a few days. We are heading out to enjoy the sun. More later.............

Sunday, April 2, 2006 11:14 AM CDT

Good morning and happy rainy sunday. I love the rain- definately snuggle weather. The girls are napping, the house is quiet-ahh, my idea of a slice of heaven. Big news in our house- Ava slept through the night! We didn't go to bed until 130am but she slept until 9am (w/ the time change). I hope the trend continues, as tomorrow I am back to work. My mom is going to hang out w/ Neil and the girls tomorrow- hoping that will help him keep his sanity. He isn't feeling well today and is napping. He is supposed to be working at the TS booth at the sports show this afternoon, so hoping he makes a quick recovery. The girls and I are going to my mom's later for a toy party. Yesterday, we got outside to enjoy the beautiful weather. I had Ava in the front pack, Kylie rode her bike (with Neil pushing her) and we had all 3 dogs. More than one person commented on what a sight we were! Kylie is really into wheels- bike, car, truck, wagon, whatever. She is constantly trying to touch them, so it makes it a bit difficult to push her around. I will post pictures of her tonight. She has been doing great, although I have a bad feeling her sinuses are blocked again. She keeps hitting her head, same side, same place, which for her, is an indicator of a headache. We see Dr Karlen this week and he is going to try and scope her in the office, to see her sinuses. We are really hoping she does not need surgery again but he thinks she will probably need it. Third time's a charm? I'm hoping. Kylie has also really beening trying to pull at her port. After she gets her antibiotic tonight, I'm going to de-access her so she can have a break. She'll get a good bath in the morning, then homecare will come to draw labs and access her again. She is done w/ the antibiotics on tuesday, so praying real hard she can be done then. She has been on some form of antibioic since Nov and has been on the IV form since Jan. We are ready to be DONE! The girls have their 2 mo and 18mo check-ups on tuesday. I'm almost scared to see how much Ava weighs- she's quite the little pork-chop. She seems bigger to me than Kylie was at her age. Neil and I were taking last night about how we don't remember the first 4 1/2 months of Kylie's life. Everything we remember starts w/ her 1st seizure and so much of it associates w/ her being in the hospital. =( With Ava, I am still on edge with everything she does. Even though she doesn't have TS, I am still looking at every little thing she does and wondering if it is "normal". I am hoping this is not a trend that continues through out her life- it's just that we have met so many sick kids this last year, it's hard for me to imagine having a healthy one! This is the week we should get Kylie's CF results back, so still praying real hard for negative results. Thanks to my parents, who baby sat last night so Neil and I could grab dinner w/ Nicole & Jay- we had a great time! Well, my peace and quiet is over- Ava needs some attention- I think Neil woke her up w/ his snoring. More later......

Friday, March 31, 2006 7:38 PM CST

Good evening. What a fun, busy day we had. The girls and I got up early and headed off to the MN Zoo. Kylie loved looking at all the animals, until we got to the goats. They were making noise and licking her hand, when she freaked out. At first she was just crying, then it was between a laugh and a cry, then she would put her hand out to the goat but turn her head and whine. Thanks Nikki and kids for getting us out of the house for a good time. After the zoo, we picked up Auntie Kari and headed off to Rosedale to meet Grandma Karen & the daycare kids for lunch. We then went to see the Easter Bunny and kylie had her 2nd freak out of the day. She wanted nothing to do with him. He tried playing peak-a-boo with her and that made things worse. So, this year's picture is Ava and the bunny. We will try again next year. We then drove to Stillwater to watch Auntie Kari's softball game and we are now home for the evening. Last night, Kylie rode the merry-go-round for the first time. I was a little worried it would cause her to have a seizure but so far, so good. We did not hear back from the doctor today, so if we don't hear by wed, I will give them a call. I found out tonight I will be returning to work on monday. Although I am excited to see everyone and get some adult conversation, I am a little worried about leaving the girls. Ava is very fussy every night- fingers crossed Neil can hack it on hi own! It will also be the longest Ava and I have been apart. =( I know- there are worse things in the world. Tomorrow night grandma & grandpa are babysitting, while Neil and I grab dinner w/ friends. Sunday he is volunteering for the TS Alliance at the sports show and the girls and I are going to a toy party at my mom's. I will try and post new pictures this weekend. Have a great one!

Thursday, March 30, 2006 9:57 PM CST

Good evening. I am snuggled up on the couch with my two sleeping angels- simply the best feeling in the world. I love listening to their soft breathing, their gentle sighs. We had a good day today- we spent the morning playing and cleaning. When Neil got home, we headed over to Nicole & Jay's for a playdate w/ Noah. Kylie and Noah spent the time "sharing' toys, pulling hair and jumping on each other. I can't wait until the day Kylie and Ava can play like that. We then headed off to Maplewood Mall, grabbed a bite to eat and exchanged the skirt we got Kylie for Easter. She is such a tiny little thing- such a change from a year ago where she was pure pudge. Yesterday was a busy day. We visited Auntie Patti in the morning and Kylie got fitted for new ear plugs. I then dropped the girls off to hang out w/ Auntie Kari, while I went to the doctor. I had a bunch of biopsies taken, checking for skin cancer. I had a spot removed a year ago that had pre-cancerous cells and that spot grew back when I was pregnant w/ Ava. They found 3 other suspicious areas, so they took those too. I go back in 2 weeks to get the stiches removed and as usual, fingers crossed nothing comes out of it. It's actually nice having something possibly wrong w/ me for a change instead of with my kids! We then took Auntie Kari to Target and bought some stuff to "pimp" Kylie's ride. =) My mom bought her a bike that she can't fall out of when she has a seizure, so we are adding a basket, license plate and streamers for the handle bars. A flower helmet completes the picture. We then headed off to Rosedale Mall (I know, we are mall junkies) w/ Auntie Andrea, to get a bit of walking in, as it was too windy outside for Ava. We met my mom, Kari and Andy for dinner. Kylie was literately falling asleep during dinner, so we headed home. Tomorrow, we are going to the MN Zoo w/ Nikki and her kids and then plan on doing some sort of fun family outting tomorrow night. I am wondering if we will get the CF results back tomorrow, as our other genetic tests have come back on fridays. As usual, praying so hard Kylie does not have cystic fibrosis but knowing we will "deal" if she does. Next week we have appointments every day and I think I'm going back to work too. Hopefully I will be able to connect w/ my boss to find out. Sweet dreams! Much love- The Gibbons Family

Tuesday, March 28, 2006 10:21 PM CST

Good evening. I fixed the pictures. The caring bridge site was "under construction" and inadvertantly deleted some pictures. We had a decent day today. Although Ava was pretty fussy, I got the girls to nap for a bit at the same time, so that was huge. I am hoping that Kylie isn't coming down qw/ something or getting over medicated. She slept for 2 hours this morning and for almost 4 hours this afternoon, from which I had to wake her up. She also has been hitting her head occasionly, which has been associated w/ her sinuses being blocked in the past. We have an appointment w/ Dr Karlen next week and he is going to try and put a scope up her nose to see if things have closed again. I pray to God they are still open because I can not handle one more surgery or hospital stay. Kylie, on the other hand, thinks our stays in the hospital are mini-vacations. She adores all the attention she gets. Grandma came over for dinner tonight and had a good time playing w/ the girls. Tomorrow we are going to visit my Aunt Patti, so Kylie can get re-fitted for her ear plugs, (which she pulls out every time we put them in). I have a doctors appt in the afternoon, so Kylie is going to hang out w/ Auntie Kari. We then plan on meeting Auntie Andrea for dinner and a walk around the lake. Just a day full of Auntie visits! We are still waiting on pins and needles for Kylie's genetic testing to come back. Fingers crossed! She has been busy keeping us on our toes- getting into everything, mauling Ava, the cat, the dogs, pulling everything off the fridge and trying to turn the knobs on the stove. Very naughty but we are loving every bit of it because it is "normal"! Today, the little stinker unscrewed the cap off her the end of her portacath, (the end we inject the antibiotic into). She is so funny w/ it- she pretends the cap (attached to tubing) is her microphone and she screams into it. Well, that's it for tonight. Please continue to keep Miss McKenna in your prayers, along w/ all of our other little friends. Also special prayers for Jess B, who is in the hospital right now. Much love- The Gibbons Family

Monday, March 27, 2006 9:12 PM CST

Good evening. For an unknown reason, Kylie's picture has disappeared from the front page. We are working w/ caringbridge to get in back, so stay tuned. We had a good weekend. Ava seems much happier and has turned into a social butterfly. She has been very smilely and has even cooed a bit at us. She is still somewhat fussy in the evening but getting better. Since she spent almost a month w/ me sleeping in the pullout hospital chair, we are having a hard time getting her to sleep alone at night. So, we need a king size bed. =) Kylie has been doing great. She is over the crud and has been in an awesome mood. I don't even want to say it but it has been over 2 weeks since she has had a seizure. She had labs drawn off her port this morning and a new needle put in. The site wasn't numbed up enough, so she did feel the needle go in. We will definately make sure it is numb enough next time. She is working hard at walking. She has been all over the place in her walker and has been getting into major trouble w/ her crawling. Her favorite is to put things into the VCR, crank the stereo way up as soon as her sister falls asleep and when in her walker, she loves to cruise up to Ava while she is sleeping, steal her nuk and then proceed to see how far she can shove her hand in Ava's mouth. As I am scolding Kylie and Ava is screaming, Kylie gives me one of her impish grins and scoots away as fast as she can. Last night, we went out to dinner w/ my family for Kari's birthday. Kylie had a great time, eating off Grandpa's plate, throwing things on the floor and waving at everyone who walked by. She especailly loved her first oreo cookie, given to her by Grandpa. As Kari said, she looked a bit like Hitler when she was done, w/ a chocolate mustasche. We had a great time. We have a busy week ahead, meeting w/ friends and family. We are trying to keep our minds off what the genetic results might hold for our future. Praying so hard Kylie does not have cystic fibrosis and that Ava remains healthy. We are busy getting our team ready for the annual TS walk and are so greatful to those of you who will be joining us. Huge thanks to my cousin Lori, who has been busy getting many pledges. You rock! Please continue to pray for Miss McKenna & her family, as well as for our many other friends battling the seizure monster. Thank you all for signing the guestbook- we seeing the awesome love and support we are getting from so many. Thank you and sending you all sunshine & smiles- Love The Gibbons Family

Saturday, March 25, 2006 9:13 PM CST

HAPPY 16TH BIRTHDAY AUNTIE KARI! Love Kylie and Ava

Good evening. Ava and I had a lazy day, while Kylie spent the day w/ Grandma Karen. They went and watched Kari play softball, visited cousins, went shopping andwea renow hanging out at Kari's birthday party. Ava and I took a long nap this morning and just spent the day bonding. She was actually in a good mood all day, smiling and cooing at me. Yesterday, Kylie got fitted at Gillette for her AFOs. They took castings of her legs and will get fitted in 2 weeks. Kylie did great. We picked out fun, animated butterfly prints for the braces. They will help to support her ankles, so they aren't so bendy. She really wants to walk, so we are hoping this will help things. She loves holding our hands, taking big, uneven wobbly steps. She takes a few steps, then turns to give us a grin, then a few more steps. After Gillette, we went up to Northdale so Kylie could see her friends. The girls and I then drove down to Cottage Grove, where we met my dad for lunch. Kylie had a great time, throwing things on the floor, grabbing for waitress's id badge, and sharing lunch w/ her favorite Gramps. We then came home, the girls took a nap and then Kylie's friend Mary, w/ her mom Eileen came over. Also, another TS mom, Dawn, and her daughter came over and we had a nice afternoon. Thanks for the beautiful gifts ladies! Dawn gave us a beautiful prayer shawl, which we wrapped Kylie in last night. Last evening, the girls and I went out to dinner w/ my mom to Snuffy's, the restraunt I worked at through highschool & college. Kylie loved her banana malt and left a huge mess on the floor. Tomorrow, we are having dinner w/ my family for Kari's birthday and just hanging out. We are praying So hard we will get negative test results for our little princess. Please continue to pray that she will NOT have cystic fibrosis. I think 2 genetic diseases is enough for one family. 3 would be too much. Have a wonderful weekend! Love The Gibbons Family

Thursday, March 23, 2006 5:20 PM CST

Today Kylie woke up full of giggles and continued to giggle for the rest of the morning. What a great way to start the day and it sure put a smile on my face. Ava wasn't even too crabby and actually was content to sit on make lap and give me small baby smiles. They napped at the same time so I could get some stuff done and they both got baths, so it was a good start to the day. My friend Jody stopped by for lunch and Kylie was very happy to see her. This afternoon, we saw Kylie's ENT dr, who agreed w/ the plan for 2 more weeks of IV antibiotics. We have to see him when she is finished and he will then attempt to put a flexible scope up her nose, to see if her sinuses have cleared. He wants to keep her unsedated if at all possible, so she should be really thrilled with this appointment. He said he will most likely have to do surgery on her sinuses again but would like to get us to Detroit first. We then discussed the CF testing and he said that when she was in the hospital, all of them (the drs) discussed that this was a strong possibility that she had CF. Were they planning to clue the parents in? Apparently not. I wish they would've tested her while in-patient, as we could have the results back by now. After the appointment, I decided to call the genetic counselor that has been following Kylie, who also happened to do the testing on me when I was pregnant w/ Kylie. I had her pull my old records to look at my CF test results (when we told we would NOT have a kid w/ CF) and apparently, there was a chance of us having a kid w/ CF. The gene I have is so rare that the chance of having a CF kid was so slim, they felt further testing wasn't warrented. Uh, hello! Have you heard about our luck w/ odds? We are becoming the collectors of rare diseases. I guess Kylie will truely be a textbook case if she tests positive. So now, we wait. We pray. We pray louder and harder than ever before. My faith is really being put through the ringer right now. But when they told us yesterday that thought she might have CF, it really didn't blow us away. Bad news? Bring it on. We've heard it all before. Nothing fazes us anymore. But, we would love some good news. Tomorrow, Kylie is being fitted for her AFOS in the morning. The girls and I are then heading down to see my dad at work and we are going to grab some lunch. In the afternoon, Kylie's friend Mary is coming over to play (along w/ her mom Eileen) and another TS mom (Dawn) is going to join us as well. It should be a fun day. Neil works long hours for the next week, so we will be having a lot of girl time. My baby sister =) Kari is turning 16 on saturday, so stay off the roads! (I'm serious) We will be stopping by her party on sat and then will have a family party on sun. McKenna's Miracle benefit is coming up on April 9th. They need all the support they can get, so if you would like to join us all there, check out her website at www.caringbridge.org/mn/drewolson. It should be a great time and she is quite the cutie pie. Kylie has a playdate w/ her next week. Hope you all enjoy the rest of the week! Much Love, The Gibbons Family

Wednesday, March 22, 2006 3:57 AM CST

UPDATE #2: New pictures
UPDATE: Today's doctor appointment was not what we expected. We saw the infectious disease dr and were expecting to just find out how much longer she would be on antibiotics. Instead, we found out that Kylie may have cystic fibrosis. What?! Apparently, the infection that she has in her sinuses is rare and is hardly ever seen in that area, as the sinus cavity is a sterile area, (well, tell that to my kid- she has had every infection there already). They do see it though in kids w/ CF. I asked if there where any other possibilities besides CF and she said immunosupressed people can get that infection there, except she just passed all those tests and is not immunosupressed. A very remote possibility is that she picked it up in the first surgery, when her sinuses were washed out. The dr said the water used could've been bad, although unlikely. I am extremely nervous, as when I was pregnant w/ Kylie, I tested positive for the CF gene. We went through lengthy genetic counseling and they did further testing. We were told I have an abnormal trait on the CF gene but am not a carrier and that we would not have kids w/ CF. So now, we don't know what to think. How much should one child have to endure ? Is it not enough that she has TS, a rare genetic disease? Is it not enough she has epilepsy? That she has von Willdebrands, another rare genetic disease, that she has horrible reflux? Is it not enough she has spent over 1/3 of her life in the hospital, that she has multiple scars from procedures, that she has a permanent cathater in her chest? I am trying so hard not to question God but seriously, WHY? Did I do something so horrible in my life that my child is paying for my sins (which I know is silly). Has she not already taught us all how precious life is? And what about Ava? If Kylie has CF, we will have to get Ava tested and worry about her too. I asked the dr what the next step will be if Kylie has CF and she said she will hook us up w/ the CF clinic. Hello, we already have a membership to the TS clinic and I don't know if our schedules can another specialist. I guess if we get a pulminologist added to our list, we will have all the "ists" covered. And to think, I thought all I had to worry about for the next few months was brain surgery and if I will ever fit back into my size 4s. Having kids sure keep you on your toes! I will update again tomorrow after we see the ENT. Praying for no more suprises and praying SO HARD for negative CF results. Oh, and 2 more weeks of IV antibiotics. =( More later....

Good morning. Miss High Maintenance (aka Ava Grace) and I are having a late night/early morning party. She was starting to wake Kylie up, so we came downstairs to play. How many more years until I get to sleep through the night? I love both of my girls dearly but wow, are they ever complete opposites. Kylie was (and is) so laid back and easy going. And Ava, well, let's just say she isn't. =)Kylie had OT at Gillette yesterday and they were impressed with how much she has improved since we were last there (2/14). She has improved even after having hundreds and hundreds of seizures over the last month- what a miracle she is. We ran some errands in the morning, then picked up lunch and headed over to my friend Danielle's house. Her youngest is 1 week younger than Ava, so it was fun to see them together. Kylie had a good time playing w/ Gavin. In the afternoon, we did some shopping and I got the girls' easter outfits. Grandma Karen wanted to hang out w/ Kylie, so she had dinner w/ my parents and then went shopping w/ my mom. We have a busy day ahead- I have an eye appt this morning, Kylie sees the infectious disease drs this afternoon- fingers crossed she will be done w/ the abx tomorrow-, then all of our animals go to the vet tonight. Tomorrow we see ENT, so hoping her sinuses get the all clear. Well, the screamer is calling me. Hope you all have a good day. Much love- Neil, Maria, Kylie and Ava Grace

Monday, March 20, 2006 11:57 PM CST

18 months old today and the complete joy of our lives, (along w/ her sister, of course). Kylie has been through such an incredible journey, yet aside from the many scars, medications and VERY busy social calendar, you would never know. Everyone who meets her falls in love with her. We get so many comments about how well she tolerates all of her medical procedures. For example, over the weekend she had a cathater placed, without a wimper and was strapped down for an xray. Did she cry? Nope, just twirled her ponies and babbled at the tech. Even though we are starting to see a glimmer of what her increasing activity level will bring (this morning she catapolted off our bed, head-first, getting stuck between the bed & port-a-crib and bending her accessed port in the process), her personality continues to amaze me daily. We did not leave the house today- we have colds, even poor Miss Ava, who is NOT happy about it at all. We got out yesterday to church, where Kylie kept my dad entertained throughout mass. She then went shopping w/ my mom & Kari, while Neil ran errands and Ava & I cleaned. Our week is full of appointments, at least a few every day. I am hoping to update pictures soon, so be on the lookout. Kylie and Ava have both been getting up to party around 4am, so I better turn in. More later...........

Saturday, March 18, 2006 10:23 PM CST

Good evening. Our "peaceful" time home was temporarily short lived. After a very long day w/ 2 cranky girls on friday, Kylie spiked a temp of 102.7 early friday eve, just as Neil & I were preparing for our 1st evening out in months. Normally, I would've just watched it but with her just getting her port put in, I was a little nervous. I called ENT and they sent us in to the ER, thinking she could be septic. The ER was a complete zoo but they bumped us to the head of the line (gotta love having a chronicly ill child w/ a complex medical history). They drew labs, w/ blood cultures, took a urine culture and did a chest x-ray When they undressed her, we noticed she had developed a rash that covered her entire body. She dodn't eat at all yesterday and was irritable & sleepy. Basicly, they figure she a viral infection or was having a reaction to the zosyn. The ER dr spoke w/ infectious disease, who decided to take her off both antibiotics and start a new one. They gave one dose in the ER and sent us home. We had to come back this morning for follow-up labs & another dose of antibiotics- it only took 4 hrs. They were going to admit her, as they didn't think homecare could provide the med she needed, but we got it straightened out and we came home. Her temp high today was 102.2, so we are just watching her closely. We are so glad she had the port put in- no pokes! We have to follow-up w/ ID & ENT this week. The girls hung out w/ grandma last night while Neil & I got out for a few hours. Today, Neil volunteered for the TS Alliance at the auto show. I went w/ my mom to look at vans (she bought one) and ran to target w/ Ava. We went out to dinner w/ my family tonight to celebrate Kylie's homecoming. Now if we could just make it though the week w/o a return visit to the ER. Fingers crossed........

Friday, March 17, 2006 9:07 AM CST

Happy St Patrick's Day! We had a great night of sleep our first night home and Ava is still enjoying her slumber. Kylie and I are having a quiet morning and she is loving being home. I do think she is missing all the attention she was getting from the hospital- she keeps wanting me to hold her and wants my undivided attention. And Ava was screaming at 3am, until I picked her up and let her sleep w/ us (as she did every night at the hospital). Habits to break. Although it was so good to leave yesterday, it was hard at the same time. Kylie received such awesome care from the doctors, to the nurses, to CSAs, to the EEG monitor techs to the housekeeper (who said yesterday, "Oh! You are leaving? I am going to miss Kylie. I just love her!" A few of the nurses even told us they were sad when they heard Kylie was leaving. Besides just giving awesome care to Kylie, I had so many people just loving up Ava. There was always someone wanting to hold her- the nurses even took her a few times at night so I could get some sleep. It made a stressful situation bearable. I talked w/ Dr Frost yesterday at length about her EEG, surgery, etc. He said it is sort of hard to tell but he thinks her seizures are coming from the right side, mainly the right fromtal/central regions. She has had activity fro the left side on previous EEGs but currently, the right side is the active side. The background of her EEG is slow, due to her meds and when she is having a seizure, there is just a slow build-up. This means her seizures may be coming from deep in the brain. As for surgery, he said it is really going to be a decision we have to make. He said because she is NOT showing any autistic tendencies, she is not losing function after seizures and is instead steadily progressing, and because she is so social and seems very bright, we have to decide if doing surgery would do more harm than good, as there are risks associated w/ surgery. If we could medically control the seizures so she would go a few months w/o one, than have a few weeks w/ alot, could we consider that "controlled" and skip surgery all together? My biggest concern is that by doing surgery, we would take away part of her personality. I had a dream that we did surgery and she lost the ability to smile- a huge part of who she is. Dr Frost said that the area she is having seizures from is already damaged from the tubor and the function she had in that area most likely already transferred to the other side of the brain. They could take out the most active tubor and try to medically control the other ones. I am also concerned about the long term effects of all the meds she is on (5 for seizures) and would love to see what she would be like w/o so many in her system. Because she is so bright on 5 meds that would probably knock any one of us out for weeks, what could she do w/ fewer meds? Plus, I don't want to be in the hospital for a few weeks at a time every few months, trying to control her seizures once again. What kind of life is that for Kylie and it is not fair for Ava. So, we will see what Detroit brings us and keep our fingers crossed. Time to go enjoy my girls. Have a great day!

Thursday, March 16, 2006 9:52 AM CST

Day 24: UPDATE: 1015pm , We are home, getting ready to turn in for the night. I will give a full report on what Dr Frost said in the morning. Good night!

Good morning. Tonight we will be sleeping in our own bed! (I would say beds, but Kylie will be sleeping w/ us until she is 15) We have to stay for her 2:00pm IV antibiotic, then we are free to go. I am still waiting to talk to Dr Frost, so I will update after talking to him. I had my 6 week check-up today, where they weighed Ava. Granted, she had all of her clothes & diaper on but 13 lbs! She is going to surpass her big sister's weight for sure! Kylie had a rough night- in a lot of pain, many tears from the port-a-cath. More later- Ava is screaming.

Wednesday, March 15, 2006 11:47 AM CST

Day 23: UPDATE: 540pm: Just spoke w/ Dr Frost- he still hasn't looked at Kylie's EEG (grr) but promises to do so tomorrow and then let us go home. So, I am assuming we won't be leaving until the afternoon. Kylie has been pretty cranky since surgery. She got some tylenol- which didn't help- then some codiene and she is now sleeping. When she wakes up, they are going to pull her PICC line (yeah!), so we will have one less tube to deal with.
Good morning. We had GOOD news for once today- the geneticist's office called and Ava does NOT have TS! I was so happy I nearly cried. Now I will only have to worry about the million other things that can happen to her. =) As for Kylie, she had surgery this morning to have her port-a-cath put in and came through with flying colors. This port will be used for her IV antibiotics, fluids, blood draws, scans, etc and will be left in at least until after she has (hopefully) surgery. She had a traumatic experience with the lab guy last night. I told him she has no veins left for blood draws, hence the port. He said, "If she didn't have veins, she'd be dead" -well, no crap (excuse me) but he knew what I meant. He decided to try the arm that already has 50 holes in it from PICC line attempts, IVs and lab draws. Guess who couldn't get her blood drawn? He was rough with her arm and not very nice in general. Anyways, a very nice lady came up and got her blood drawn instead. So, now we don't have to worry about any more pokes and she should be getting her PICC line out soon. She is still wobbling and a bit out of it from surgery, but is other wise doing well. They are working on getting her homecare set up and the plan is to go home tomorrow! Hopefully the coming snow storm won't hit us too badly. We can't wait to go home! We have a buncj of follow-up appointments next week, therapies and Kylie is getting fitted next friday for her AFOs, so we will still be busy. I talked with her therapist from Gillette and it sounds like she will be discharged from therapy soon, as she is doing so well and we will just continue w/ her home therapy. We are waiting to speak with Dr Frost, so I will update after we talk w/ him. If you haven't read the paper yet today, on the front page of the Pioneer Press, there is an article about Kylie's good friend McKenna. We adore their family and are keeping them in our prayers daily. Please say an extra prayer for this little angel today. More later.......................

Tuesday, March 14, 2006 10:51 AM CST

Day 22: Good morning. Still no seizures since saturday, which is awesome! Kylie continued to get sick yesterday, unless she was regularly given zofran. She was still very sleepy and cranky in the afternoon but is having a great day today. We have been crusing the halls in her new bike that Grandma Karen bought her, while Ava snuggles w/ the nurses. No change from Dr Frost- he is working on her EEG and the comparison of her MRI from the one done last year. She saw PT today, who had her crusing along furniture! Her small vocabulary is still scattered. Da-da is the only real word she consistanly says, although yesterday she said "Hi" to the EEG tech and over the weekend, she had a seizure and the nurse asked her is she was all done afterwards. Kylie said, "All done". She has also said on a few different occasions "Zaundra", the name of one of her nurses, (although ma-ma hasn't been said for months!) I can't wait until she really starts talking and we are hoping that surgery would help this. Tomorrow at 8am she is getting her port put in and possibly her sinuses washed out, then home on thursday! I can't wait to have my girls home. Kylie does have an icky cough, so hoping it won't get cancelled. Keep your fingers crossed! More later...........

Monday, March 13, 2006 11:19 AM CST

Day 21: Good morning. I am happy to report that since 730pm saturday night, Kylie has only had 1 seizure (and we aren't sure, as we didn't see it- she was playing w/ the volunteer in the playroom, who thought she could've had one). So, we are doing great in the seizure dept but not so well w/ the sinuses. Kylie threw up 2x on sat night, then spent most of yesterday vomitting up sinus stuff. She was very pale and sleepy, sleeping most of the day and waking up only to throw up. After some IV zofran, which they are now giving on a regular schedule, she is feeling much better today and actually has some color in her cheeks. She still isn't her usual perky self but close. Dr Karlen (ENT) stopped by today and doesn't know if it is just a cold vs virus vs sinuses. He is going to stop by the next few days to peek at her nose and if it keeps going in the sinus direction, he is going to take her back in to surgery. He said instead of sedating her for a CT and then again for surgery (if needed, he would rather just take her in, sedate her and wash her sinuses out, then culture if needed. Dr Frost is pleased the seizures are stopped for the time being and is not making any med changes (they increased the pregabalin last night). Kylie is set to get her port put in wed at 8am and I am assuming they will keep us in overnight (because of her sleep apnea history) but thursday morning we are out of here, barring any complications. I want to be home for at least a week w/ the girls before I have to go back to work. Neil hung out w/ Kylie yesterday afternoon, while Ava and I snuck home to get some cleaning done. Huge thank you to my mom, who has spent the past 21 days here at the hospital- we really appreciate it. Thank you to Margie & Rebecca- Kylie loves her new stuffed dog! Sorry we missed you yesterday. That's all for now. More later.........

Sunday, March 12, 2006 11:41 AM CST

Day 20: Good morning. Knock on wood but Kylie hasn't had a seizure since 730pm last night. Whoo-hoo! Unfortunately, we think her sinuses may be plugged again, as she has the same symptoms she has had every time they have been impacted- snoring, coughing, tons of mucus draining, and the big sign- puking w/ her coughing fits. Dr Karlen is going to come see her tomorrow, so keep your fingers crossed she won't need surgery again. She has been pretty tired and just wanting to sleep. Yesterday she only had 16 seizures and about 25 the day before, so progress is being made. She is still not drinking very much, so they are leaving her IV fluids off today to see if she actually gets thirsty. Ava was up until 330am, so it was another long night. Have a good day and enjoy the weather for us. More later................

Saturday, March 11, 2006 1:33 PM CST

Day 19: If all goes according to plan, we should be able to go home monday. We are going to go over Kylie's EEG on monday w/ Dr Frost, have Dr Karlen (ENT) see her and get orders for her follow-up CT and hopefully have Dr Delahunty do her pre-op physical for wed. SHe is set to have her port-a-cath placed on wed at 8am, so we will have to come back for that. Then, we hopefully plan to stay away from the hospital for a long time. Kylie has a cold right now, so hoping that won't interfere w/ the port placement. She only had 2(!) seizures during the night but so far around 10 during the day. Neil & I took off early last night, ran errands and stayed home to watch a movie. Ava was up until 3 am but slept pretty well the rest of the night. Auntie Kari & her friends visited yesterday, as well as Uncle Andy and my cousin BJ, who is home from Iraq. Congrats to my cousin Julie, who welcomed baby Will into the world yesterday. We decided yesterday I am definately going back to work by April 1st, possibly sooner. I will take the rest of my maternity leave when (if) Kylie has surgery, most likely in June. Please continue to keep Miss McKenna in your prayers, as she fights her battle w/ Alpers (www.caringbridge.org/mn/drewolson) More later.............

Friday, March 10, 2006 10:53 AM CST

Day 18: UPDATE:245pm Ok, more time to write. Kylie had 11 seizures during the night and we had one fussy baby, who was awake from 1-4am. I think Ava has some tummy troubles that keep her up at night and make her a bit crabby during the day. The morning started out ok, until Kylie's PICC line accidently got cut. The nurse was trying to take the dressing off after her bath and Kylie decided to help her by grabbing her hand while she was cutting the tape. Therefore, the scissors cut the PICC line in half instead. So, she went down to IR this afternoon, recieved some gas to help calm her, and had a new one put in. Pretty quick and simple, although I am becoming concerned w/ all of the radiation she has been receiving from all her PICC lines (#4 today) and scans. The last thing she needs is new tumors froming- she does a good enough job making them on her own! We met w/ the neurocutaneuos clinic people, who will help cordinate her care w/ all her specialists. We met w/ Dr Frost, who has yet to look at her EEGs (grr!) and he wanted to keep her here, based on the fact she spiked a temp last evening and again in the middle of the night, as well as that her intake is pretty bad right now. She isn't eating very well and she has only drank 4 oz today. We are keeping our fingers crossed it is not from the felbatol increase. She has only had 4 seizures since 6am, which is awesome, so hoping the trend continues. She was set up to get a portacath monday morning but it was pushed back to wed at 8am, so we are going to try our best to get her to drink so we can get out still this weekend and come back on wed for the port. I do NOT want to be here until then. Well, she is getting tired so it is off to nap! More later............

So much for going home. She spiked a temp, isn't drinking enough, having too many seizures still and this morning, her Picc line accidently got cut in half. So, off to have the PICC fixed at 1230pm and surgery monday to have a permanent access (portacath) placed monday. Missing home sweet home. More later.......................

Thursday, March 9, 2006 1:22 PM CST

UPDATE: Detroit is re-scheduled for April 19th.
Day 17: Kylie ended the day yesterday w/ 31 seizures- still too many but better than what they have been. Today she has had about 20 so far, but tend to have a good chunck w/ dinner. Good news- we most likely will be busting out of here tomorrow! We will be going home w/ homecare for her IV antibiotics and the infcetious disease dr is debating if she still needs both antibiotics and if she needs them every 6,8 or 12 hours. We are meeting w/ the Neurocutaneous clinic people at 9am and are planning to go over Kylie's EEG and MRI w/ Dr Frost before leaving. We can't WAIT to go home! Ava is calling. More in a bit........
I'm back. I just got the written version of Kylie's MRI and is basically sucks. I can't wait to see what her EEG says. I also want to go over w/ Dr Frost what exactly surgery involves. I am so praying that she will be a candidate. It will most likely happen early summer, if it can be done. I went home w/ Ava last night and spent the morning hanging out w/ her. It was so nice! More later..........

Wednesday, March 8, 2006 2:26 PM CST

Day 16: Hi all. Nothing new to really report. No med changes today. Kylie had a ton of seizures yesterday but is doing somewhat better today. She had 23 seizures on day shift yesterday but only 10 on day shift today. We napped for a few hours this morning and missed MN Wild player Phillipe (sp?) Kuba's visit. He was here to show the kids his olympic bronze metal and to sign autographs and he left a personalized one for Kylie. She has been hanging out w/ the nurses this afternoon, while I have been visiting w/ some friends- thanks Alicia, for the awesome relaxing care pack, and to Nikki, for the beautiful picture frame, dinner yesterday and yummy treats- also to Katie & Joanna for thier delicious dinners. We had a good visit w/ Bridgit & Frannie last night and thanks to Ross & Molly for checking in on us, as well as to Andrea & Steph for visits earlier this week. There have been so many others checking in on us and I am sorry if I forgot to mention a thanks but we appreciate each and everyone of you! Laura- you were ahuge help this morning- thanks for letting me nap! Fri we have an appt w/ the neurocutaneous syndrome clinic- not sure what it's all about but we will find out. Out of the 10 kids on the unit right now, 4 have TS, which I find amazing and scarey all at the same time. It's nap time for the girls- more later..............

Tuesday, March 7, 2006 2:11 PM CST

Day 15 (and counting): Hi all. Last night was a LONG night, except this time, the star performer was Miss Ava Grace. She was awake from 1230pm-615am, with maybe a 1/2 hour nap thrown in. I had a melt down around 430am, mainly from being over tired, stressed out and feeling there is no end to this nightmare. Huge thank you to the nurses for taking Ava during the night and my mom, for preventing me from running away last night. =) Also, I have to give a HUGE thanks to my dad, who has spent the past 2 days down at the hospital w/ us. It's so fun to see him w/ the girls- he does a great job and Kylie just loves him. Thank you to all the girls from work, for their many visits, especailly Nikki, who is here on all her breaks. Kristin- it was nice meeting you today- thanks for the flowers. They remind me that spring is just around the corner, a sign of hope and healing. Sue- what would we do w/o you? You are never allowed to move away! Yesterday, Dr Frost increased the tranxene and felbatol. She is still having roughly 50-60 seizures a day but bounces back w/ a smile after each one. No med changes today- just wait to see if the changes help. I asked if he had time to look at her EEGs yet- he said no, but to keep on him about it. =) I told him not to worry- I will be asking daily. It looks like 3 more weeks of IV antibiotics, then possibly 2 weeks of oral. I got out of the hospital last night for a bit w/ Eileen (Mary's mom) and Sarah (Jessi's mom)- both are Kylie's friends w/ TS. Jessi got admitted yesterday, so it is nice to see some friendly faces. Well, that's all for now. Please continue to keep Kylie in your prayers, that her seizures will decrease and that we can take our sweet girl home! More later...........

Sunday, March 5, 2006 4:14 PM CST

UPDATE: 1135am monday- The trip to Detroit is off. Dr Frost doesn't feel Kylie is stable enough to travel at this point, with having so many seizures, having to be loaded so often and being on the IV antibiotics (we would have to travel w/ a pump). In addition, he said she has to be off the IV antibiotics for 2 weeks before she could have surgery. So, they are rescheduling the trip for 4 weeks from now. He isn't sure how quick she could have surgery after we get back but they are looking into things. Frustrating to have things put on hold but relieved at the same time. I was scared out of my mind to travel w/ her. He is going to double her tranzene dose at bedtime and we will see about the rest of the day. More later...........

On a day that should have been filled with happiness, all I could do was feel sad. Ava looked so cute in her baptism gown, yet it felt like a part of my heart was missing, not having Kylie able to join us. She wore the same gown that Kylie did, one that their great-grandma Ueland made out of my wedding dress. I thought back to the day Kylie was baptized, the day we enjoyed the first snow of the season, so similar to today. We were so excited for her future, had so much hope. Now, the days are filled with anxiety and the "what if's". What if she is not a surgical candidate, what if we can't get her seizures under control, what if she isn't with us a year from now? I finally cornered Dr Ritter today and did not get good news. It's almost like an out-of-body experience, where the news you are getting you hear, but it doesn't affect you because surely they aren't talking about your child. He said her seizures are getting worse, which we know but hate hearing out loud and that things aren't looking too good. Her platelettes are really low, at 91,000 and the dr said she usually runs at 200-300,000. It could be a sign of aplastic anemia (which is fatal), a combo of her meds are some sort of viral infection (which we are hoping for). But because her platelettes are low, it limits our med options. Of the few meds we have left to try, some cause the platelettes to even get lower. The hemetologist will be here in the morning to talk w/ us. As it stands now, it sounds like we may be here until wed morning, then head straight to the airport (our flight leaves at 1045 am). Depending on how she does while we are gone, we may get re-admitted to Children's when we get home. If that's the case, I may be returning to work next week, so I can save the rest of my leave for surgery. If she can't have surgery, I may use the rest to fly to Hawaii and not come back. =) On top of things, I have been feeling crappy and just want to go home and be with my family. We aren't even definate about Detroit yet, just "we think we can get you there". The dr is starting her on pregabalin 2x a day, a med that we have tried before and didn't really se much of an effect w/. Dr Ritter doesn't think she was on it long enough to see if it was really going to work, so we will keep our fingers crossed. Thank you to our family and friends who came to the baptism today and to Sue, who hung out w/ Kylie. We had the brunch in the hospital lounge, so Kylie could be somewhat included. We lit candles today in church for Kylie & McKenna, praying for their miracles and praying the Lord will hear us. Praying so hard tonight....

Saturday, March 4, 2006 4:54 PM CST

Neil and I went home last night to sleep and Grandma & Auntie Kari stayed w/ Kylie. I felt like I was getting sick but feel much better today, just a lingering headache. Kylie decided to get up at 3:30am and decided to stay up until 8:30am. She partied w/ the nurses and had her longest seizure yet, 1 minute (which really isn't that long). Her regular IV (#6) fell out again, so as long as her PICC line remains intact, she should be good. The only thing I'm worried about is it clotting off at home, as they are keeping fluids running constantly while we are here. It really doesn't look like we are getting out of here before Detroit. Ava is getting baptized tomorrow and we are having the brunch for it here instead of at home, so Kylie can be involved a little bit. It seems weird having family functions without Kylie. So, we are bringing the party to her. She is going to hang out w/ the nurses while we are at the church. Ava pretty much slept through the night last night- 12:30-5:30 am- and took her first bottle this morning! Small steps in the right direction. After Kylie got loaded last night, she only had a handful the rest of the night. I'm not sure how many she has had today. Her zonegran dose was increased again tonight, so we will see if that helps. That's all for now. More later.....

Friday, March 3, 2006 5:06 PM CST

Hi all. Yesterday's seizure count was 44 and today we are somewhere around 25 or so, but after her PICC line placement, she started having seizures every few minutes, so we decided to load her (and we were not waiting for a 15 minute seizure). That was around 1:00 or so and she has been enjoying a much needed break since then. She has been napping the past few hours and I was even able to sneak one in myself. The PICC line placement didn't go so well- they tried for an hour and a half to get one in her right arm, then decided to try her left. The only place they could get it in was close to her armpit and now, whenever she bends her arm a certain way, the IV beeps. She ended up getting her 6th IV during the night, so we are keeping it until it goes bad. We are hoping for a quiet evening and we have not spoken w/ the neurologist yet. More later...........

Thursday, March 2, 2006 11:50 AM CST

UPDATE: New pictures (I only added a few, as I ran out of paper to print them). I'm not sure of her seizure count today but it seems like she had more than yesterday. She is scheduled to go to the OR tomorrow for a new PICC line at 815am. The doctors are having a differnece of opinions on the long term antibiotics so hopefully we will know more tomorrow. A few days ago, Dr Frost said her EEG didn't look too bad- today, Dr Ritter said it didn't look too good. What that means, I have no idea- maybe a happy medium somewhere in-between. I have to dash back to the hospital- my first time home in 10 days! Ava is screaming and Neil is not dealing well with her right now. =) Mommies can fix it! More tomorrow.......

Good morning. We are calling today "Black Thursday". Kylie had 9 seizures during the night, including a nightmare that turned into a seizure. They had a ton of problems w/ her PICC line during the night and finally decided a little bit ago that she needs a new one. Unfortunately, kids w/ clotting problems don't do real well w/ PICC lines, so if the new one goes bad, she will end up w/ most likely a port-a-cath. *The radiologist just decided to try and unclot the PICC she has now, so keep your fingers crossed.* The just got her EEG wires off and is taking a tub. She screamed through the whole thing and then she had to get a new IV right after, so we did not have a happy camper. She even cried during her last seizure and on top of not eating or drinking all day, she isn't in a real great mood. Grandpa is visiting right now, we have had a few girls from work visit, and McKenna & Drew's mommy stopped by to say hi. Uncle Ben will be down later tonight and I'm sure Kylie will be thrilled to see him. We haven't talked w/ Dr Ritter yet but she is completely done w/ the neurontin and her zonegran was increased again. Praying for fewer seizures today and that we can bust out of this joint soon. =) Sending up prayers for our favorite little girl..............

Wednesday, March 1, 2006 10:11 AM CST

UPDATE: Whoo-hoo! We ended the day w/ 28 seizures- a huge improvement! The zonegran was increased tonight and the neurontin decreased. She is still hooked up to EEG, hoping to get them off tomorrow. She has to be on the amicor (for her von Willdebrands after surgery) until saturday, so I am guessing we will be here at least until then. Infectious disease came by today and is adding topamyocin, in addition to the zosyn. We are going to try and update pictures this week. More tomorrow...........

Good morning. We ended the day yesterday w/ 50 seizures. Today, she had 7 during the night and just a few so far this morning. Unfortunately, with some of the ones she has had today, she has been crying afterwards, which is new for her. We haven't talked w/ Dr Ritter yet but the nurse said he is increasing the night dose of zonegran and changing the neurontin to 2x a day instead of 3x a day. We are REALLY hoping he can figure her meds out so we can go home soon. We leave for Detroit a week from today. They moved us in to a private room last night, which is SO nice. It probably won't last long but we will enjoy it while we can. Kylie's PICC line was acting up last night but luckily they finally got it to work. Huge thanks to Andrea, who hung out w/ us all day yesterday. Kylie saw PT yesterday, who agreed about the AFOs for her ankles. We will have to set her appt up soon. I will update more later....

Tuesday, February 28, 2006 12:50 AM CST

UPDATE #2: We switched rooms and are now in 7943. The our # is 651-241-7911. Yeah for McKenna, who went home today!
UPDATE: Seizure tally so far today is 23 and counting. PT is working w/ her right now. Infectious disease just left and they said it looks like she is growing pseudomonas but will know for sure tomorrow. They are switching her to Zosyn and may add gentamyocin tomorrow. Nothing new from neuro. Dr Frost is out today and tomorrow so Dr Ritter is going to try and "fix" her. Praying McKenna can go home soon so her family can enjoy her at home instead of her. She is such a sweet baby, so brave and it's so very hard to see what she, and her whole family, is going through. They are absolutely awesome people. Please continue to keep them in your prayers, as well as for Miss Kylie Jo.
Day 8: Kylie had a better day yesterday, ending w/ 19 seizures. Today started better but she has had quite a few late morning/this afternoon. She really needs a good nap before therapy comes this afternoon but her roommate is getting hooked up right now, so it is a bit noisey. We have her set up for a nap in the wagon. After we got back from surgery yesterday, she started vomitting blood but is better today. Her echo of her heart and EKG were normal, aside from a slight murmer. Her eye appt went well and things are unchanged from our last visit. We haven't seen the neuro yet but I will update later on.

Monday, February 27, 2006 1:31 PM CST

We are back from surgery and things went well. She got her 5th IV started down there, as the one they started last night went bad. They were going to give her sedation through her IV but after the full dose, she was still wide awake. They had to give her the mask instead. Kylie has never been scared of any medical procedure she has had but today, she was gripping my neck for dear life. She was afraid of the nurses wearing masks. Almost broke my heart- can't imagine how I will feel if they cut her little head open! Anyways, the holes they drilled in her sinuses were closed again, so Dr Karlen re-opened them, sucked out all the icky stuff and sent it for a culture. They then sent her to get a new PICC line and she will now be on IV antibiotics for 3-6 weeks. As for her seizures, we are now going of the neurontin and re-starting the zonegran, as she is having almost 4x the seizures as when we started. She is also getting hooked up to EEG again, as her seizures have been getting more involved and more frequent. Intrestingly enough, they gave her 8am meds to her at 4am and now she hasn't (I think) had a seizure since. She did have quite a few during the night though. Between her seizures, Ava's crying and Neil's snoring, it was the night from hell. I definately need a nap today. Kylie is also having a cardiac echo and EKG today, as she has a tiny hole in her heart- not TS related- and even though we were cleared by the cardiologist almost a year agao, they won't do the PET scan in Detroit w/o a current ok on her heart. So, a busy day still ahead. If her seizures continue on, we plan on being here the week. Please continue to keep her in your prayers, as well as Kylie's special friends McKenna and Jess. These little beauties need a seizure break! More later.........

Sunday, February 26, 2006 8:20 PM CST

Good evening. We are still on 7940 and Kylie is really seizing her butt off. She had over 50 seizures by 6pm tonight. She started up w/ her night ones again and 12 during the night. Then, she has been getting up at 6am or earlier and starts seizing right away. I think Dr Frost is hoping her sinus surgery helps stop her seizures tomorrow but I highly doubt it. I think the combo of the new med and coming off the old med is increasing her seizures. She has been having more and more each day and they are getting more intense and involved- 42 thurs, 49 fr, 58 yesterday and we will probably end around 70 or more today. This is so extrememly frustrating and I am praying so hard she can have surgery. On a positive note, she has been so happy, full of smiles and giggles. To her, being on 7940 is like one big vacation. We even went to buy some new clothes for her today, as she is seeming to grow right out of the ones we brought. Last night, Neil, Ava and I were all able to stay w/ her, as we don't have a roommate right now. We are keeping our fingers crossed this lasts for a while. I guess I took for granted how easy it really was when I was pregnant with her. =) Kylie had a good day, hanging out w/ Jess and McKenna. We got some cute pictures that I will hopefully be able to post soon. Big thanks to Uncle Ben and Auntie Kari, who hung out w/ Kylie so Neil and I could go to my cousin's baby shower. It was so good to get out of the hospital for awhile but it felt so weird to not have Kylie w/ us. Last night was the first night I was really able to sleep w/ her this past week and I have really been missing her snuggles (and pokes in the eyes, in my nose and her picking my teeth) =). Thank you to Andrea for the awesome dinner last night and to Nikki for the yummy lunch yesterday. Also, thank you to Beth for the cute blanket for Kylie- she loves it! The nurse just told me the seizure count- 73 for today. Makes me sick to my stomach. I will update tomorrow after surgery.

Saturday, February 25, 2006 4:33 PM CST

Hi all. Not much new to report. The seizures are continuing- every 5 minutes or so at times, other times she has about an hour between. She tries so hard to continue what she is doing- whether it be playing, eating or reading books- while she is having the seizure. Today her seizures have looked a bit more intense and she has had more pronounced shaking of her head. I really don't think the neurontin is helping, so if we don't notice improvement by monday, I don't want to keep her on it. She is having more seizures now than she was when we came in. She is not drunk looking at all today and has been having a great time playing. We brought her walker to cruise in, as she has been a terror crawling around, sticking her hands in the VCR, in the disc drive for the computer or pulls any plug/wire she sees. She started having seizures during the night again, so the little rest we were getting is soon to be gone when we get home. Not much going on today- just hanging out. Hoping the sinus surgery helps- they said her maxillary sinuses are completely blocked. So, that's it for now. More later.........

Friday, February 24, 2006 11:00 AM CST

UPDATE 430pm: Kylie's seizures have continued through out the day. At times, she is having them every 5 minutes. Other times, she goes 30min-2hrs w/o one. Dr Frost only wants her loaded if she is clustering for 15 minutes straight. He thinks she may be going through withdrawls from being loaded so much the past week. We will see what the weekend brings. She should be totally off the zonegran by sun or mon. We are keeping the neurontin the same for the weekend. We saw the infectious disease dr and she may be on 2 anti-biotics after surgery, depending on what the cultures show. As for her von Willdebrans, she will get amcor before surgery, which prevents the blood clots from breaking down. Tomorrow she has therapy and will have a better eval. A lot of kids left this weekend, so it should be quiet. Kylie seems much brighter this afternoon, as some of the loads make her way out of her system, aside from the frequent seizures. We had a visit from Zoey and her mom today and Zoey looks awesome! She is doing so well after her recent brain surgery. And to Beth- it was so nice to meet you today and put a face w/ a name. Our flight to Detroit is all booked and we are crossing our fingers we aren't hear until then. Ava gets baptized next weekend, so we need to be home a few days in advance to get the house in order. Hope you all have a great weekend and I will update more later.

Good morning. Surgery is set for monday at 1030 am. She will be getting a PICC line again and we are waiting to hear if she needs the DDAVP again. She had a bunch of seizures this morning as soon as she woke up, the napped for awhile and has none since. So, we are off to a better day. If the seizures get under control this weekend, I would imagaine we could leave tuesday. Dr Frost is going to continue the zonegran wean over the weekend. I said we are not loading her anymore w/ ativan and she seems brighter this morning. He permently increased her dose of the valium when she needs to be loaded. So, off to a better day. I will update later and let you know how she is.

Thursday, February 23, 2006 11:05 AM CST

UPDATE: 11:11pm: I am starting to get very concerned we are in over our heads w/ her seizures. She had 25 alone on the day shift. The ativan load in the morning made her crazy all day and between the neurontin increase and teething, she is beyond irritable. The seizures continued all evening and she got loaded around 7pm, this time w/ a higher dose of valium. This calmed her irritablity emensely and we took her to the gift shop and bought her a few toys she probably didn't need (but made us all happy anyways). =) About an hour after the load, the seizures started back up. We have tried 2 other meds in the past to load her, which didn't work and have 1 left to try. I have to talk to Dr Frost about it in the morning, as he said he needs to come up w/ "plan Q". They are not going to let her ech out.at/drink after midnight, w/ the hope they can sneak her surgery in tomorrow but it is not looking likely at this time. Fingers crossed- I'm hoping the general anestheisa will give her brain a chance to rest. She doe pretty well w/o seizures while she is sleeping but as soon as she is awake, watch out. Please continue to pray for McKenna, who made it to 7940 this evening but started seizing again and ended up back in the PICU. Jess did well w/ her surgery today and is in the room next to us. Caden may become our roommate tomorrow and we have met many new, wonderful families this week. Continued prayers for Kylie's hope........
UPDATE: Well, our afternoon had an unexpedted turn. If they can book an OR, Kylie will be going in for surgery tomorrow to have her sinuses re-done. He is definately going to wash things out again and depending if things closed up, possibly the windows will be drilled again. She has so much inflammation in there, it's hard for him to see what was going on. She will have another culture done and more likely than not, another PICC line and 3 more weeks of IV antibiotics. =( They aren't sure if they can get the PICC line in at the same time (don't we know that story!), so we be giving her a good bath in the morning. On a happy note, at least she will have the PICC for Detroit- one less thing to deal w/. We found good tickets and will book tonight. Kylie's seizures are continuing but w/ an extra dose of neurontin, hoping things slow down. PT/OT saw her this afternoon and agree she needs AFOS (ankle support). Speech is also following. Well, w/ no end in sight of our stay, I will update later. Big thanks to Eileen, who stayed w/ Kylie this afternoon so I could get a break. More later...........

Good morning. Not much change here, as Kylie continues to seize her little butt off. The load last night did nothibg to stop the seizures, and neither did today's. I talked to Dr Frost today and he does not like her seizures (who does?). Instead of giving a loading order, he is going to go by a shift to shift basis. I have a feeling we are going to be here a long time. He is rapidly increasing her neurontin, hoping that will help. Her seizuers have been coming every 5 minutes while awake- not fun to watch, nor fun for Kylie to go through. We are waiting for the radiologist to compare her MRI to the one from last year. DrKarlen, her ENT, will be here at 12 to look at her CT. So, if anyone needs us for the time being, we are at 651-241-7921. Keep your fingers crosed we will have a better afternoon. More later...........

Wednesday, February 22, 2006 5:50 PM CST

UPDATE: 745pm :Kylie has had 17 seizures since 6pm, when we got back from the MRI. She got loaded x1 and continues to seize through the load. They are giving her eve meds early, hoping that will help. If not, I'm not sure the next step. They were going to try and call Dr Frost. More later..........
Hi all. We are still on 7940. Kylie had another rough day. She had 4 seizures during the night, then started right in every few minutes when she woke up. She got loaded around 7am, then had a few seizures scattered throughout the day, until about 2pm and they started every few minutes between 2-230pm, then she fell asleep. They took her down for her MRI around 315 and also got her CT done so we don't have to come back in a few weeks (they checked out to see how her sinuses are). The plan now is to continue w/ the zonegran decrease and the neurontin increase. We are here on a day-to-day basis, and it is up to kylie when we get out of here. She did keep de-sating in her sleep last night (her o2 levels were dropping)so we will keep a close eye on that. They are still working on our flight info to Detroit but we should know more tomorrow. Good news- Ava passed her hearing test! Bad news- Kylie's seizures just started again. =( It will be a long night. McKenna's story will definately be on the news tonight- channel 11 after the olympics (www.caringbridge.org/mn/drewolson). For those of you who don't know her story, it is heartbreaking. Her family is amazingly strong and her mom has been a great source of support for us the past year. Please continue to keep them in your prayers, as well as for Kylie, and our friend Jess (www.caringbridge.org/nd/jessmarie), who is having her final brain surgery tomorrow. I will continue to update as things progess- hoping we have better news our next update.

Tuesday, February 21, 2006 7:07 AM CST

**UPDATE 5pm: We took Ava to see the genetisist today and she said she would be very suprised if Ava has TS, (YEAH!) The looked her over w/ the woods lamp and found no white spots, (although she did say she saw some desitin cream in her neck/arm pits- I won't tell her it is really baby puke and I haven't had time to give the poor kid a bath). They drew her blood and we should have the results back in a few months. As for Kylie, she continues to seize, despite being loaded 3x today. At one point, they were coming every 3 minutes. She has calmed down a bit now and will hopefully sleep in a bit. They started her on neurontin and are weaning her off her zonegran. She is going to have a sedated MRI tomorrow at 4pm and we are heading off to Detroit on March 8th , and she will have scans done on the 9th and 10th. It will take four weeks to get the results back, so if it is a go, we are expecting surgery sometime the end of April/early May. Things may move quicker/slower but we will see. This means I will be returning to work much earlier than expected but I will then take my remaining leave when she has surgery. Also, the prayers to get McKenna home are paying off. They are expected to be here tonight. Also, tune in to Channel 11 news tomorrow night after the olympics- there should be a story on them. More later...........
UPDATE: 1140am: Kylie's wires are off =) and Dr Frost is going to try and get us out of here later today, if Kylie cooperates. Since she was loaded this morning, she had 5 seizures right away and one since then. Ok, now another one. They took her IV out, so hopefully she won't need it. My friend's son was admitted this morning, so akthough we wish they weren't here, it's nice to have someone to talk w/. Today is the one year anniversery our lives forever changed, they day Kylie was diagnosed w/ Tuberous Sclerosis. What a yera it has been. Ava will be tested this afternoon and we are praying it will be negative. We won't have the results back for a few months. I will update more later...........
Things are not off to a great start today. Kylie has been awake for not even a half hour and has already had 6 seizures and is about to get loaded w/ ativan. She did ok during the night- she had maybe one and slept like a log. My mom stayed w/ her and Neil and I took Ava and stayed at the hospital apartments across the street. I hate not having Kylie next to me at night- just a weird feeling. They hooked her up to the EEG wires last night, so at least they are catching her seizures- pray they are coming from the same area as before. It is horrible seeing her seize so consistanly. Pray the doctors can figure out how to help her. Also, please continue to pray for McKenna, as they are still stuck in CA (www.caringbridge.org/mn/drewolson). Praying for miracles.............................

Monday, February 20, 2006 7:51 PM CST

Hi all. Kylie had a really bad day today and we have been admitted back into the hospital, room 7948. She has had at least close to 40 seizures today and has possibly been in a sub-clinical status seizure for the past week. We loaded her again w/ valium 2x today, for the 6th time since sat am. They gave her IV ativan in the ER , which helped for about 20 minutes and they started again. She has been having them every 5-15 minutes. My heart is breaking for her and I am at a loss of what to do to help her. Please pray they can get her seizures stopped. They are hooking her up to the EEG tonight to see what the seizures are doing- pray they are coming from the same area as last time. If not, she probably won't be a surgical candidate. We did make it to the Mall of America today and got Ava's pictures taken. We skipped Kylie's and hope she will be well enough to have them taken soon. I will update more later- please pray for us.............

Sunday, February 19, 2006 2:29 PM CST

UPDATE: Sun 1020pm: Kylie is thankfully sleeping for the night. She had somewhere between 15-20 seizures today and we loaded her again at 700 pm. That stopped them for the rest of the night and I pray she sleeps ok tonight. We plan on taking the girls to MOA in the morning for their pictures and am keeping my fingers crossed Kylie won't be drugged out during them. =) As drunk as she was tonight, she was still pulling herself up to stand, reading books, knocking over her dad's pop and was full of giggles. Hoping for a better day tomorrow!
Yesterday Kylie ended up w/ 17 seizures. We loaded her at 730am and 6pm. The seizures stopped after the 6pm load and she went to sleep around 9pm. I didn't notice any seizures until about 745am, then she had 7 by 830. So, we loaded her again and she slept for awhile late morning. As soon as she woke up, they started up again. I think we are at about 12-13 seizures right now. I talked w/ Dr Frost again today and he said to keep loading her as needed, then to talk w/ his nurse in the morning to see what meds they are going to change around. Also, he said we are definately off to Detroit. I have to talk w/ her surgery scheduler in the morning. Since everything is already pre-approved, it shouldn't take too long to set up. We should be able to fly out in the next couple of weeks. In Detroit, there is a special kind of scan they will do of her brain, to see where exactly the tubors are, how many and the exact location of the seizure activity. They will send the results back to St Paul, where Dr Frost will present the results to the surgical confrence team. If they think there is a chance surgery can help Kylie and that by doing so, they will not cause any undue harm to her motor functioning by taking the tubors out, they will schedule surgery. First, she would have a grid placed on her brain, which is sort of like a mesh netting w/ electrodes attached directly to her brain. With these electrodes, they would be able to see if the seizures are on her motor strip. If they are, they would not do further surgery. If not, then they could go ahead and take out the tubor(s). The grid would be in for approximately 5 days, then surgery would be after that, so we would be in the hospital approximately 2 weeks, barring any complications. Please pray that surgery will be an option for Kylie, as the medications are obviously not going to help her. If she can have surgery, pray it will help her seizures go away. I am so scared for her but can not allow these seizures to control her life. And w/ many kids w/ epilepsy, I do not want her to have "the big one". I know this sounds stupid but I pray Ava is not here just so Kylie can be taken from us, but it has been on my mind ever since I found out I was pregnant w/ her. Anyhow, please continue to pray for Kylie's miracle. Also, please continue to keep Drew's sister, McKenna, in your prayers (www.caringbridge.org/mn/drewolson) They are stuck in CA w/ her, as she is still in a coma, and they NEED to get back to MN but their insurance co will not cover a medical flight home. If anyone has any ideas/connections/loopholes to help them get their baby home, please let us know. Praying for miracles.................

Friday, February 17, 2006 7:54 PM CST

UPDATE: Sat 2:20pm: Kylie has already had 12 seizures so far and we had to load her at 730am w/ valium. That lasted about 4 hrs and she started up again. I just gave her extra tranxene, so hoping that will help. I talked w/ Dr Frost earlier and he said we could load her a few more times today, if she recovers well in-between loads. I am supposed to check in w/ him again tomorrow to see what the plan w/ the tranxene is. Praying this is short lived and we can get her back to her baseline. All fingers crossed.....
Our seizure free days seem so long ago. Today Kylie had 11 seizures but is hopefully sleeping for the night. A few of them look slightly different than her regular ones, although all were not too involved (knock on wood). A couple of times we were having a great time, laughing, giggling and just being silly, when the seizure monster reared it's ugly head and she continued to laugh through the seizure. She had a few episodes of vomitting today, which I'm not sure is seizure related or of something else is going on. Dr Frost is having us add a half dose of her tranxene w/ her 2:00pm meds, so we will see if this helps this weekend. I just hate, hate, hate this. We were having such a good time being "normal" for once. Poor Ava- we had a week and a half to really enjoy her and now I feel like I'm spending the majority of my time on edge, waiting for the next seizure. Praying things will get under control soon and if not, that we will find Kylie is a good surgical candidate and we can get those nasty tubors out of her head. My neighbor, Sue, has been nice enough to hang out w/ us girls this week while Neil has been working his butt off (in the freezing cold I might add!) We have been close to loading Kylie a few times this evening but she manages to miss her loading dose by minutes. Please keep her in your prayers this weekend, as well as for Drew's sister, McKenna, (www.caringbridge.org/mn/drewolson) May they get their much needed miracles. Sending up many prayers tonight...............

Thursday, February 16, 2006 11:26 PM CST

***New Pictures
Hi all. Yesterday went better- no seizures that we saw but she had 3 today. I am waiting to hear back from Dr Frost's office on what they are going to do w/ her meds. The extra tranxene helped yesterday, so I am thinking maybe a morning dose every other day. It is so disheartening and discouraging to see the seizures back after so long w/o them. So, we are back to not letting her out of our sight and on edge, waiting. She has been super crabby and irritable late afternoons and has been wanting to go to bed early the last few days. We have been giving her tylenol, thinking it was related to her teething but now I'm wondering if it is seizure related. It looks like we will be heading to Detroit sooner than later now, where Kylie will have her scans done to see if she is a surgical candidate. I am going to wait until after our neuro appt next week to schedule it, with the very high hope we can get things under control by then. I am definately not ready to let anyone cut my baby's head open. On a happy note, Kylie pulled herself up to a standing position today all by herself! It was so she could knock all my pictures off the shelf and I was reluctant to scold her, as I was so proud of her! Those legs are getting stronger. She had therapy w/ Angie today and did pretty good. We are thinking she will need some sort of brace for her foot, as it likes to turn funny when she stands. Tomorrow is our big day to get her PICC line out! Neil and I are so excited, as it will free up a bit of our med time. She will have to start an oral antibiotic for the next 2 weeks, until we get the all clear from ENT. We met Kylie's social worker today for the first time, which went well, although a bit sad that Kylie has to have a social worker in the first place. But, I think this will get us to the right spot if Kylie should need any services in the future. We plan on staying in the next few days- too cold outside- and are thankful we had Ava early instead of on her due date- sat. Our bulldog- Buster- has a bum leg/hip right now, so it has been extra challenging around here lately, trying to get him in/out of the house to do his business. Hoping he heals up over the weekend. We have plans to get the girls' pictures taken on Monday at MOA and are keeping our fingers crossed Kylie's seizures settle down by then. Please keep her in your prayers! Also, please continue to keep McKenna in your prayers- pray they can get her stable so she can be flown home and that the dr can figure out a way to let her parents and family have more time w/ her. Good night and much love to you and yours- Neil, Maria, Kylie Jo and Ava Grace

Wednesday, February 15, 2006 1:35 PM CST

**NEW PICTURES
So far, ao good. We have not seen any seizures yet today and Kylie does not seem overmedicated (what the doctor was worried about). We are PRAY, PRAY, PRAYINGG this was just a tiny bump in the road. She had 2 more seizures last evening, for a total of 4 yesterday. On her third one, her top half of her body was bent over on the bottom half. When I picked her up, she had the goofy smile and a ton of stringy goo coming out of her mouth- not my best visual of her. She ended up going to bed early last night and slept well. Big thank you to Sue for spending Valentines Day w/ us girls- it was nice not to be alone last night, as I was going overboard w/ my emotions. We went to Grandma Karen's yesterday for a Valentine's Day party, then spent the evening in. This morning, we had a play date w/ Kylie's friend Lily (and her mom Alicia). My daughter is definately the brute of the group. We have a long ways to go w/ sharing, keeping our hands to ourselves, and baby mauling. But, I guess she is finally acting her age! Ava is doing good. I am extremely anxious about next week, w/ all of our appointments- Ava's hearing and genetic tests, Kylie's eye and neuro exam- but keeping fingers crossed all will go well. We got bad news today- Please keep the Olsen family in your prayers (we met them when Kylie was first diagnosed). Their son, Drew, passed away in Aug of Alpers disease. Shortly after, his sister McKenna, was diagnosed and is now fighting a battle of her own. They went to Disney for vacation and yesterday, instead of coming home, McKenna started her battle w/ seizures and is in a drug induced coma, on a vent. She is not yet a year old and is fighting the biggest battle of her life. Please pray for her and for her family, who have gone through more this past year than most indure in a lifetime. I know during these stressful times, words of hope/encouragement/prayer are so wonderful to hear. Please stop by their guestbook and offer a few words of your own- www.caringbridge.org/mn/drewolson - then, take a few minutes today to hug your children, no matter what naughty thing they did today and give thanks that they are in your lives. Please keep our little peanut in your prayers as well. Tonight I will definately update the pictures. Thanks for checking in! Much Love- The Gibbons Family

Monday, February 13, 2006 8:50 PM CST

UPDATE#2 2/14 530PM: Dr Frost thinks she is "cycling", so if she has any more tonight, we arew to give her half a tranxene. Tomorrow morning, she will get a full tranxene. He is hoping that will be enough to stop them. Keep your fingers crossed!
UPDATE 2/14 230pm: Valentine's Day has not been our best day. Kylie definately had a seizure this morning, only about 5 seconds and not real involved but we have been down this road so many times before, so we know better. I was so very hard to watch and I lost it when she was done. Poor girl did not understand why her momma was crying. Luckily, Neil was still home, so that helped. We are waiting to hear back from Dr Frost's office. They are going to change some meds around, either adding a morning dose of tranxene or increasing her depekene, as her levels are lower than usual. Crap- she just had another one. I will update more later.
Good evening and Happy Valentine's Day tomorrow! Today was the first day us girls were on our own and I have to say we did pretty good. The girls were up at 630am but back in bed by 830 for a long nap. =) Kylie was pretty irritable and was crying over everything and nothing. Her nose was a bit runny too and she has really been digging at her ears. I think she is just teething but you never know with this kid. I am praying super HARD that new teeth won't bring a bunch of seizures w/ them, as they have in the past. Neil couldn't decide if he saw two episodes yesterday or again, if she was just playing. It has been an uneasy two days of us staring at her. I haven't seen any definate seizures but I feel something isn't quite right. Again, hoping it is just the new teeth bugging her. We got some cleaning done today and then we all met up w/ my parents for dinner. Kylie has therapy in the morning, home health care will meet us here late morning, then off to Grandma's daycare for Valentine treats. I set up some appointments for Ava next week. On the 21st, she will have her genetic testing done (ironicly on the one year anniversery of Kylie's diagnosis!) and will have her hearing re-tested at Children's on the 22nd. Praying she will pass w/ flying colors. We need extra prayers for a friend of mine and her son. He was born at 26 weeks, a month before Kylie and until now, had been doing great. He started having seizures last week and my heart is breaking for them, know the difficult road ahead of them. Please keep Caden and his family in your prayers. Luckily, he will be followed by Dr Frost, so I know he will get great care. That's all for now. I am going to try and post some new pictures tonight or tomorrow, so be on the look out! Much love to you and yours- Neil, Maria, Kylie and Ava Grace

Sunday, February 12, 2006 1:15 PM CST

Hi all. Things are pretty low-key at our household, aside from the lack of sleep. Friday we made our first venture out as a family and visited friends at the hospital, stopped at my parents for dinner and went to my sister's basketball game. Yesterday, I took Kylie on some errands and for a little one-on-one girl time. We had fun, until she dumped my large (and full) latte all over the floor at Target. She gave me the look like, "Did I do that?" I took both girls out on my own yesterday to a baby shower and it went pretty well, aside from Kylie showing everyone her new-found trick of picking her nose. We hung out at home last night. Neil scared the crap (excuse my language) out of me last night, when he thought Kylie was going into a seizure. He didn't know if one was starting or if she was just playing with a toy. After about 15 minutes of us staring at her, holding our breath, we decided she was just playing w/ a toy. Whew! But it was enough to make me feel sick to my stomach the rest of the night. We decided that we are going to get Ava tested soon, as we would like to enjoy her without wondering if every little movement is the start of a seizure. We have been reassured over and over that she looks great and her chances of having TS are very slim (1 in 6000), but those were the same odds we had w/ Kylie and look what happened! So, for peace of mind, we want her tested sooner than later. She will have to wait until she is 6 mo to be tested for the von Willdebrands disease. I will be tested at my 6 week check-up. Ava was awake off and on from 1230-3am, then up straight from 3am-9am. She wasn't crabby but we need to get on a better schedule! When we ride in the car, Kylie is so cute w/ her. She rests her hand on Ava's carseat the entire time we are driving. Whether or not she is trying to pinch her, we don't know but it looks cute. This week should be pretty quiet. No dr appointments (except maybe getting Ava's hearing retested) and (crossing fingers) Kylie should get her PICC line out on friday. Continued prayer requests that the seizures stay away and Ava remains healthy. Thanks for stopping by! Love to you all- The Gibbons Family

Thursday, February 9, 2006 10:04 PM CST

Good evening. So much for a good night's sleep. Ava was up most of the night but it was my fault for letting her eat every 4 hours during the day, so she was playing catch up. She had her check-up this afternoon w/ the ped and had her hearing re-tested. She passed in the left ear but the right ear was inconclusive, (there was too much back ground noise), so next week we either head back to the ped or go to Children's to have it checked again. Praying real hard we get the green light for both ears. We had a nice visit w/ Caroline and her mom this evening, although Kylie spent most of the time mauling Caroline- pulling hair, taking toys away, climbing on top of her. We have a ways to go in the manners department. Kylie had her in-home therapy today and did well. It is so fun to see how far she has come the last few months. Congrats to my friends Danielle and Jacques, whose baby boy Beau was born today. We can't wait for Ava to meet him! That's all for now. Hope you all have a great weekend! Much love- The Gibbons Family

Wednesday, February 8, 2006 4:47 PM CST

Hi all. Things are continuing to go well at the Gibbons household. Kylie had therapy at Gillette yesterday and they think that because she is doing so well, they are going to hold off on the braces for now. Sounds good to me but I am going to check w/ her ped to be on the safe side. We had a pretty low key day yesterday and pretty much just hung out. I left Ava for the first time, =( and went to get my hair cut. Neil did a great job by himself. Today, we saw Kylie's ENT, who thinks she is doing great. One more week of IV antibiotics and then she can get the PICC line out. Home care came yesterday and drew her drug levels w/ the rest of her labs and if all looks good, no more drug levels for 3 months! We have to follow-up w/ ENT in 3 weeks and if she continues to look good, we (hopefully) will be done w/ all of this. He is worried that scar tissue will grow over the openings he made in the sinuses and if it does, she will need the surgery again. But we will cross that bridge when we come to it. After our appt, we took the girls up to North Dale (rec center) so Kylie could catch up w/ all her buddies from day care. She had a great time and both girls slept all afternoon, so mom and dad snuck a nap in too. Ava is sleeping pretty well at night. She only gets up a few times to eat, then goes right back to sleep. We are hoping this trend continues. It amazes me to think of what I have been missing out on all my life without her in it. You don't even realize it until it's there. I am so in love with this little girl and really feel like she completes our family. Kylie seems to be warming up to her too. She likes to sit and giggle at her, when she's not busy ripping the living room apart. I love it! I love the messes she makes, the way she moves all over the place, even how we have to pick up all the DVDs 36 times a day. She is making so much progress and it is just so fun to watch. Tomorrow, she has therapy in the morning, Ava has a ped check-up and then Kylie's friend Caroline, w/ her mom, are going to visit for dinner. They are coming down from ND and Caroline is having surgery on fri. Please keep her in your prayers. That's all for now. Thanks for checking in w/ us and for your continued prayers. They are truely helping Kylie's continued miracle- seizure free for 10 weeks! Much love- The Gibbons Family

Monday, February 6, 2006 11:05 PM CST

Good evening, What was supposed to be a relaxing day turned into our usual all day dr/hospital appts. It started off ok and the girls actually let us nap for a few hours late this morning. We had to bring Ava in to the dr this afternoon to have her jaundice checked out and Kylie needed an ear check. Kylie's ears looked great and they sent us to Children's lab to have Ava's bilirubin level drawn. Her first real blood draw and she was less than thrilled. Kylie, on the other hand, was happy they were not poking her for once and was giggling at her sister's tears. Thankfully, her levels came out ok and she dosen't need any further work-up. Then, I was sent for an ultrasound of my leg to make sure I didn't have a blood clot, as I have been having a lot of pain in my calf since this weekend. Again, we were thankful to find out I do not have a clot, just a complete extra set of veins in my left leg (we love these rare things). Thinking all was well, we headed home for a quiet rest of the night- until Kylie's PICC line decided to work it's way out of her arm. We got it back in (thanks Andrea!) and the home care nurse came out tonight to check it out. It looks ok right now but we are keeping our fingers crossed that it stays in until the end of next week. Neil is taking Kylie to therapy in the morning and then homecare will be out to draw her labs. I may try and sneak out in the afternoon for a haircut. Ava is doing great and we can already see the differences between her and Kylie. She has great muscle tone and has already rolled over in her bassinett and almost flipped off the couch today. She is very easy going and calm and so far does not look like she will have reflux (whoo-hoo!) Kylie is slowly getting used to her, although she still gives us this look every morning like, "She's still here?" Today, she tried to crawl into Ava's swing while the baby was in it, so we have to watch her pretty closely. A major accomplishment for Kylie- over the weekend, she started to take steps (assisted, of course) but even last week, she wouldn't move her feet when standing. We are hoping that she will really take off once she gets her braces. Hoping that she gets fitted tomorrow but I'm not sure. Anyways, we are enjoying our time at home together and thanking God everyday for our children's health. We pray the seizures stay away from Kylie and that they never visit Ava. She will be tested for TS, as well as for von Willdebrand's disease, when she is about 6 months old, unless we notice any signs of either beforehand. The doctors are pretty confident she does not have TS and we can only pray that they are right. Thank you all for your continued prayers and warm wishes. We appreciate every one of them! Much love- Neil, Maria, Kylie and Ava Grace

Saturday, February 4, 2006 2:50 PM CST

Hi all. We are home after a long few days. Kylie is getting adjusted to being a big sister, (sort of), and is showing her love by trying to poke Ava's eyes, scratch her cheeks, and steal her blanket. =) And she loves to giggle when Ava cries. We thought the two girls looked very similar right after she was born, but not so much now. Ava has a much darker complexion than Kylie, has dark hair, (what she has), and looks like her eyes might be dark. She seems to look a little like my dad, (although much cuter!) She is doing very well and seems very healthy, although she did fail her hearing test before we left the hospital today. They think it is because her ears have a lot of vernix in them still and she does startle when we make loud noises, so we know that she does hear. We will follow up w/ the ped later this week to make sure things are ok. Please keep her in your prayers! When I was looking back at the calendar, I realized that the day Ava was born marked the day that changed our lives one year ago- the day Kylie had her first seizure. Although now, we will celebrat feb 2nd instead of dwell on it. How ironic how things work out. We have a busy week ahead of us, full of doctor appointments, therapies and a visit w/ Kylie's social worker. Luckily, Neil is off this week to help out. I am tired but feel so much better this time around than I did w/ Kylie. Thank you to our many visitors at the hospital and well wishes from you all. We appreciate all of them! I will try and update pictures later tonight. Thanks for checking in!
Love Maria, Neil, Kylie and Ava

Friday, February 3, 2006 3:17 AM CST

Hello Gibbons Caringbridge readers!!!!! This is Grandma Karen updating with the big news. It's a Boy!!!!!! not really, did I shock you? Ava Grace Gibbons arrived at 10:47 p.m. with a lusty cry and a very health 7 pounds 5 ounces and 19 inches long. She is darling. She looks quite a bit like Kylie already. Maria did a super job after a long day. The whole birth experience was way better than we had with Kylie. Ava had great Apgar scores 8 and 9. She is soooo cute.. I just love being a grandma! Tomorrow will be busy, I decided to close daycare and I'm glad. Kylie will need her meds and IV injection at 8:00 and then we will go meet her new sister. We go back to Maria's for her therapyat 10:30. And the home health people come out in the afternoon to check her PICC line, it is a bit red, so hopefully not getting infected. Kylie is cuddled in bed with Uncle Ben and I'm getting tired so off to bed for a few hours sleep and the day will begin soon. Thanks for all of your prayers and support for Neil, Maria and Kylie. It looks like Ava is a very healthy girl, lets pray she stays that way.
Karen

Wednesday, February 1, 2006 1:27 PM CST

Hi all. Today is a much better day. Neil and I are over our food poisoning incident. I cannot remember the last time I was that sick! I ended up in the hospital for a bit last night for IV fluids, since I was dehydrated. The baby was much happier after I got some fluids in me. Her heart rate picked up and she started moving around more. Big thank you to Grandma Karen and Andy & Andrea for watching Kylie yesterday. She had a great time at daycare, hanging out w/ the other kids. She is going to hang out w/ Uncle Ben for most of the rest of the week, while we are (hopefully!) at the hospital. My amnio is scheduled for 9am tomorrow, (which will make sure the baby's lungs are fully developed) and if all goes well, they will start my induction in the afternoon. There is a chance we may get bumped to a later time if a bunch of women decide to go into labor tomorrow. I was up for a lot of the night, mainly nervous about how everything will go. Even though all of our tests have come back normal, I am completely freaked out that this baby is going to end up w/ TS too. I don't even want to go down that road. If I see one while spot or while patch of hair (what we noticed w/ Kylie right away), I'm going to lose it. But, we know that God will take care of us, no matter the outcome. But please, keep us in your prayers! Also, I have another very special prayer request. Kylie's friend Drew, who passed away in August, has a little sister named McKenna. McKenna has also been diagnosed w/ the horrible disease that took Drew's life and she is not expected to survive. She is being admitted to 7940 today for testing. If any family needs a miracle, it is this one. Please pray that God will show His power and heal this little girl. This family cannot handle another child's death. If you would like to visit their webpage, it is www.caringbridge.org/drewolson. Please drop them a few encouraging words. Even w/ all this family has dealt w/, Drew's mom, Shannon, has been an amazing source of strength for me while Kylie has been sick. That's all for now. The next time you hear from us we are hoping to have an addition to the family! Either way, I will try and update in the next few days. Much love- The Gibbons Family

Tuesday, January 31, 2006 2:40 PM CST

Hi all. Just a quick update. Neil and I are having our last "date" together before we become parents for the 2nd time. We have been spending the day in bed, with what we think is food poisoning- very romantic. So, needless to say, Kylie missed therapy today and we will have to re-schedule her fitting for her braces. I missed my OB appt and Kylie is hanging out w/ grandma today. I have my amnio scheduled for 9am thursday and if the baby's lungs look good, I am scheduled to be induced later that day. That's all for now- hoping we feel better soon! The Gibbons Family

Sunday, January 29, 2006 6:02 AM CST

Good morning. Kylie is doing so much better and I am happy to report that she has found her smile again. She was in a great mood yesterday and din't even need any tylenol. The only time she has been getting upset is at bedtime but we think it is because she has a hard time breathing at night. We have been elevating her head at night, which has seemed to help. She has been sleeping w/ us since she has been born but over the last month, we have been putting her in her crib at night and then moving her into bed w/ us later, when we are ready for bed, (in case she has seizures at night). This has worked pretty well, except this last week must have been too much for her, as now she neeeds both of us laying next to her and she has to be touching us to fall alseep. Very sweet, but this is not going to fly in a few days, when we have another little one fighting for our attention. Friday evening, the home care nurse came over to teach my mom and Neil how to give Kylie her meds through her PICC line. It is working well and so far, she doesn't even notice that it is there. The nurse will come out twice a week for lab draws and to change the dressing. She had one episode of vomitting yesterday morning while taking her meds but I think it was from a coughing fit. We are hoping it didn't back up into her sinus cavities, like the doctors are suspecting it does but time will tell. We are entering week 9 without a seizure and couldn't be happier. Kylie continues to thrive. When she was re-evaluated at Gillette a few weeks agao,they made 3 new goals for her to accomplish in the next 8 weeks (for OT) and she has already mastered 2 of them. SHe is consistanly crawling on her hands and knees and has learned to drop balls into a bucket. I know, small potatoes but we couldn't be more proud. Now if we could just get her walking... Her favorite toy of the moment is a fischer price gumball machiene that her great-grandma got her for christmas. She will play w/ it for hours. We have a very busy week ahead of us, full of dr appointments, therapies, work, and hoping to end the week with a new baby! Please keep our family in your prayers this week as we begin a whole new journey. And of course, for our precious girl, that she continues to enjoy seziure free days. Thanks for checking in!
Much love- The Gibbons Family

Friday, January 27, 2006 11:44 AM CST

We are home! We saw Dr Karlen (ENT) this morning and he gave us the ok to leave. We follow-up w/ him on wed. Kylie had her PICC line dressing changed and the homecare nurse will be out at 4pm to go over her meds and to draw some labs. Kylie has always been so easy going w/ drs/nurses and all the other medical staff but as these last few days have passed, I have begun to see the distrust in her eyes. Today she was crying when anyone came near her and only stopped when we left the unit. We knew it would happen at some point but makes me a little sad for all she has gone through. She will be on IV antibiotics at home for 3 weeks. The infectious disease dr wants us to see a gastroenterologist for her reflux. They think the reflux is playing a big role in her sinus infections, as it seems to be working it's way up into her sinus cavities. Yuck. It seems when they suctioned her sinuses out, they took her smile w/ them. We have not really seen a smile out of her since surgery but hoping she will start to feel more like herself at home. She is hanging out w/ Grandma Karen today while I run errands and get the house in order (and pack for our return hospital trip next week) =) I work this weekend, so we are going to have Kylie just hang low. Next week, she has PT/OT on tuesday, where she will get fitted for her ankle braces, I see the OB and then I work. Wed we see Dr Karlen and I work, thurs I have an amnio and HOPEFULLY a baby(!), and fri Kylie has PT/OT. It should be a full week and we are hoping things go smoothly. Well, I'm going to start my many projects. Hope you all have a great weekend and enjoy the beautiful day! Love Maria, Neil, and Kylie Jo PS Thanks to our WONDERFUL dog watcher, Sue

Thursday, January 26, 2006 8:08 AM CST

UPDATE #2: Kylie is out of surgery, not awake yet. Everything seems to have went well. The PICC is in her right arm. It took a few tries to get it in but it went ok. We will see home care in the morning, ENT and then we get to go home. We saw the OB today and if I don't have the baby by thursday (Feb 2), I will have an amnio in the morning and then induced in the afternoon. That's all for now.....
UPDATE: We moved into room 7945-1. Our #is 651-241-7917. More later....
Good morning. I tried updating last evening but it must not have worked. Kylie had a long day yesterday. Neil got up w/ her around 245am and she stayed up until 10am, napped for about 45min, then was up for the day and napped another 45min in the eve. She was pretty crabby when she was awake. She seemed to be in pain and had a hard time breathing through her nose. She also had a lot of bloody drainage coming from her nose most of the day. Her fever broke mid-morning, so that was one less thing to worry about. Overnight, she slept much better. She didn't get up until 7am today and slept pretty soundly for the most part. She seems happier today too. She can't have anything to eat or drink for the rest of the morning, so it may be another long day. We have watched Baby Enstein- Neptune about 137 since we have been here, as it is the only thing that has been making her happy. I'm having flash backs to rooming w/ Zoey and Spongebob. Kylie is scheduled to get her PICC line at 1215pm today. I am hoping anesthesia goes better today. I see the OB at 330, so we will have a better idea if #2 will be coming soon. We will be spending another night here, as the home care people can't come until tomorrow. Our 23 hr stay is becoming quite extended! I should know better than to just pack for one day. My mom and sister stayed w/ Kylie last night so Neil and I could sneak home for showers and to make sure the dogs were not destroying anything in our absence. So far, so good. We spoke w/ the ID dr yesterday and Kylie's preliminary cultures of her sinuses are coming back w/ what looks like a staph infection. We should know for sure later today. We never saw ENT yesterday, so hoping he stops by today. The neuro who is on came into our room last night, looked at Kylie, and then got a very confused look on his face, like "Did I admit her?" It was pretty funny and very nice not to have to see neuro while we are here. It is a first! We are hoping to get home tomorrow in time for therapy w/ Angie, but we aren't sure yet. Kylie ended up losing her IV yesterday, so the anesthesia team will attempt to put in a new one before getting the PICC, just to sedate her. Very frustrating! I hate having her get poked so much. Good news- we got all of her labs back from ID and it does not look like Kylie is immunosupressed. Things look pretty good. She has to have labs drawn again today, to check her liver/kidney functions, as the antibiotic she is going home on can cause damage to these organs. Rare, I'm sure, but combined w/ her seizure meds that can do the same, we are being very careful. Well, that's all for now. I will update later. Love The Gibbons Family

Wednesday, January 25, 2006 8:04 AM CST

Good morning. We have had a pretty long night. Kylie has been awake since around 4am or so. Everytime she seems to fall asleep, she jerks awake and cries. Her nose is pretty stuffy and full of dried blood. She has also been running a temp of about 100 or so since dinnertime last night, even w/ tylenol. She is geting her meds now and we are going to try breakfast. She seems in a little bit better of a mood. Neil and I will be fighting for naps today. Not much going on today- just waiting for tomorrow to get the PICC line. She is not on antibiotics until then. I will update later if anyting changes. Thanks for checking in w/ us! Love The Gibbons Family

Tuesday, January 24, 2006 1:09 PM CST

UPDATE: 3:20pm: Kylie's PICC line is scheduled for 1215pm thursday. She is having a difficult time w/ anesthesia, not waking up real well and she vomitted alot of blood, including her meds. Since she has to be put under totally for the PICC, the nurses are thinking she may be here until friday. That's all for now. I will update further later.
We are out of surgery and all went well. Kylie is still not awake yet but we are hoping soon. We are up on 7940 and feel like we came home, with all the welcoming familar faces. We have a private room, which is so nice. During surgery, Dr Karlen replaced both of Kylie's ear tubes w/ longer lasting ones and washed her ears out. He removed her adnoids, which were full of cervices where bacteria could hide. Finally, he drilled holes in her sinuses, sucked out all the infection, sent it for cultures and washed her sinuses out. He said her sinus cavities have anatomical malformations, which is most likely why the infections never clear up. They were unable to get the PICC line in today, so we will be here until thrusday and they plan on putting in one in the morning. After that, we will visit w/ the home care nurses and learn about her infusions. Kylie had no bleeding problems during surgery but they will be watching her close the next 24 hrs. The IV they put in during pre-op blew and unfortunately, it took the OR team 3 more attempts to get an IV in. They said that basicly, she has no veins left. We have known this for awhile, as each IV and blood draw attempt has gotten harder and harder to achieve. So, we are looking at the possibility of a permanent access being placed at some point. I am hoping it doesn't come to this but it most likely will. I'm going to talk w/ Dr Frost about the possibility of doing her lab draws less frequently, as she has been stable for so long. Hopefully we will get to chat w/ him while we are here. We have not seen any seizure activity since surgery and are keeping our fingers crossed it stays this way. I see the OB on thursday, so we will see then about an induction. We may wait until next week, to give Kylie the chance to have a little bit more one on one attention through the weekend and so I can sneak a few more hours of work in. If anyone needs to get ahold of us, we are in room 7943. The # is 651-241-7911. We need to get our little peanut up soon to cough some of the junk out of her lungs. She sounds pretty icky right now. Thank you all for continued prayers and notes in the guestbook. It still amazes me to see how many people we have supporting us! Love The Gibbons Family

Monday, January 23, 2006 2:11 PM CST

Hi all. Surgery is still on. They won't be able to place the PICC tomorrow but hopefully they can fit her in in the next day or too. I am waiting to hear back when they can do it. So, we have to be at Children's tomorrow morning at 730am. Kylie will get her IV placed and have the DDAVP infusion (to help her blood clot) about an hour before surgery. In surgery, the dr will replace her left ear tube, remove her adnoids and drill "windows" in her sinus cavities, as they are completely occluded. He is also shaving off part of the bone under her nose (I think). Then, he is going to suck out all the infection in her sinuses and completely wash them out, as well as wash out her ears. She has to be on IV antibiotics for 2-3 weeks, so I am guessing we will stay in the hospital until she gets the PICC, (hopefully wed or thurs). We were planning on being there at least a day or two anyways, so not really a big deal. I see the OB on thursday and we are definately going to talk about getting induced, possibly this weekend or sometime next week. I have to get medication while I'm in labor, so I would rather do it in a controlled setting. Plus, I am so done w/ being pregnant! Kylie had a good weekend, hanging out w/ her dad, grandma Karen and Auntie Kari while I worked, (although, I was a little concerned that she had the same clothes on when I left for work sunday afternoon that she had on when she went to bed on friday!) Kari watched her yesterday while Neil played boot hockey and she said Kylie crawled all the way into the kitchen from the living room- a huge improvement. Usually, she is content to just crawl around in a small area. Next week she should be getting fitted for the ankle braces that will hopefully help her to get walking. Overall, she is doing fabulous. Tomorrow will be 8 weeks since her last seizure, (knock on wood). We are still amazed and so thankful that she has been given this reprieve. The power of prayer is truely amazing! (Drugs don't hurt either!) She has become very vocal lately and loves to have conversations with you, (although we can only make out da-da/dad and the babysitter last week swore she said "all-done") and she loves waving- to any person she meets, to the dogs, to the people on tv, to the butterflys hanging in her room.We sure love our little miracle girl! Please keep her in your prayers tomorrow, that the surgery goes well and that the seizures don't decide to rear their ugly heads tomorrow. Thanks for checking up on us! Much love-
Maria, Neil, Kylie Jo & baby girl, making her appearance anytime!

Saturday, January 21, 2006 1:18 AM CST

I am so frustrated! I received a call from Kylie ENT nurse, who left a message stating her surgery is most likely going to be cancelled, as they can't fit a PICC line in at the same time. She said she would connect w/ me on monday. She is going to have one crabby momma on her hands. I am going to do everything I can to prevent it from being cancelled. It was already cancelled once, we have re-arranged our work schedules numerous times, Kylie has had umpteen pre-op physicals and labs draws done and I refuse to let her be stuck anymore. She has been on an oral antibiotic since Christmas and her poor little bottom has had enough of it. Not to mention, she has had a sinus infection since last april! Oh, and a baby is about to make her appearance at anytime! So, hoping the conversation goes well on monday but I have a feeling it is not going to. We talked to the ID dr today and so far all of her antibodies/antigens have come back normal, so it is highly unlikely she is immunosupressed. They are still waiting on a few more results. I saw the OB today and she thinks thinks baby is coming anytime and we discussed a possible induction if things get too miserable. I just have to give the word. I am hopingnwe won't need to and she will just make an appearance in the next week or so. But w/ surgery up in the air, I don't know what to do. I worked tonight for the first time in 2 weeks and I am now completely miserable. 2 more days and then I'm off until friday. I picked Neil and Kylie up at my mom's after. We got home and I was snuggling w/ Kylie on the couch, when she started throwing up all over me. So, either her sinuses are getting worse or she caught a bug from my mom and the daycare kids. I am really hoping it skips over Neil and I! We are going to quarentine her from people until she has surgery, just to be on the safe side. Hope you all have a good weekend. Maria, Neil and Kylie Jo

Thursday, January 19, 2006 9:02 PM CST

Good evening. We had a busy few days of doctor appointments. Yesterday, we saw the infectious disease doctor, whom we loved! She does not think Kylie is immunosupressed, just that she has a really crappy sinus infection that the oral antibiotics aren't touching. So, the plan is for Kylie to get a PICC line put in during surgery on tuesday and we will go home w/ IV antibiotics for 2 weeks, then have a repeat CT scan and labs to see if the infection has cleared. If so, she gets the PICC out and we are done. If the infection is still there, she will have 1 more week of IV antibiotics. We just need to make sure the little bugger doesn't try to pull it out. During the appointment, Kylie had 7 big tubes of blood drawn and didn't cry until they got to the 5th tube. She is such a little trooper! Luckily, we got all her seizure med levels drawn at the same time, as well as her pre-op labs, so no more blood draws for 1 month! They are going to be looking at a ton of different antibodies/antigens, as well as a bunch of other stuff. We should get most of the results back by monday. We saw the ped today and Kylie passed her pre-op physical w/ flying colors. We don't have to go back until her 18 month check-up. I talked w/ the hemetologist today and got back Kylie's DDAVP results. Her 1 hour level was ok but her 4 hr level dropped. So, that means the DDAVP will help her blood clot for the 1st hour or so of surgery but if she needed a longer surgery, it wouldn't work. As a precaution, they want her in the hospital monitored for bleeding, hopefully only overnight. If she shows any signs of bleeding, they will give her another dose of DDAVP. Her surgery is scheduled for tuesday at 1015am. If I happen to go into labor at that point, my dad is going to be our back-up at surgery. Grandma Karen is extremely nervous about that but I think he will do just fine. =) I go to the OB in the morning, so hoping I will get the "all clear" to go back to work. I work tomorrow, sat and sun. Happy birthday to my brother Andy, who will be 24 tomorrow. Last night, I snuck out of the house for a bit. We went to the Kare 11 news station to get pictures taken for the cover of the TS Walk brochure. Although I was ver reluctant to have my huge girth photographed, we had a good time. We met Julie Nelson, who is sort of the spokes person for the walk. We got a tour of the station and met some of the other anchors. The picture itself was hysterical. Kylie was the the youngest one there and probably the best behaved, if you can believe it. There was a kid in front of her who kept picking her nose during the shoot and Kylie kept reaching over to grab his hand and pull his finger out of his nose. It was a hoot. There was a boy around 11 or 12 sitting next to her and her had a t-shirt on w/ letters. For those of you who know Kylie, she is facinated w/ letters and she kept trying to touch the letters. The kid did not like it and said, "She's a brat!" Give her a few years- I'm sure it will get much worse! She is doing so good right now. We have actually had to baby proof the house, as she is getting into everything! From opening cabnets to opening up DVDs (and scratching them!), to putting her hands in the VCR and attacking the dogs and cat, she is keeping us busy. I know this is something all kids do, but since she has been pretty immobile and laid back for so long, it may take some adjustment on our part. We love that she is doing "normal" things, it's just that it is coming at a very inopportune time! I'm having a hard time keeping up w/ her. She has therapy w/ Angie in the morning, so we can't wait to show her Kylie's new tricks. We did get a further OT eval back from Gillette, which shows she needs ALOT of work to catch up on her fine motor skills. She will probably never have beautiful penmenship but neither does half my family, so I am not too concerned. Well, I am going to go relax a bit. Thanks for checking in w/ us. We appreciate it! Love Maria, Neil and Kylie Jo

Wednesday, January 18, 2006 1:24 AM CST

Hi all. Kylie is continuing to do well. She started therapy at Gillette again today and Neil said she did very well. She will have OT for 30min and PT for 30min 1x a week, as well as in-home PT/OT from the Roseville school district for 1 hr 1x a week. St her next session at Gillette, she is going to be fitted for braces for her feet/ankles. These will hopefully give her better support while she stands, as her feet turn out and her toes tend to curl on one foot when she stands. She needs to get stronger before we can work on walking. They put her in some sort of contraption today to get her to crawl better, but apparently she was having none of it. Neil took her today, as I am grounded to the couch for the week. He said she actually crawled on her hands and knees a bit (usually she army crawls) and stood for 15 minutes, while holding on to the play sink. This is a huge improvement and we are really seeing her develop since the seizures have stopped. She's even developing a bit of an attitude but we love to see her spunk! I talked w/ Dr Frost's office today and we increased her melatonin tonight, with the hope she could get a full night's sleep. She was up crying off and on last night, never fulling waking up. We think she is either having night terrors, (like nightmares), which is common w/ TS kids, or maybe her sinuses are just bugging her. We see the infectious disease dr tomorrow morning and are hoping for good news, We really don't want to end up w/ a central line during surgery. We should also hear back on her infusion results from friday. If the DDAVP worked, she will get that med before surgery next week. If it didn't, she will get a blood product instead. Not much else is going on. I am restricted to the couch until friday, when I see the OB. I work all weekend, so hoping I get the green light to do so. Although, whenever I am up, I am having contractions. This little girl just wants out! Big thanks to my mom, who has been watching Kylie during the day so I can rest. Tomorrow I may sneak out for a bit. Kylie is having her picture taken, along w/ a bunch of other TS kiddos/families, at the KARE 11 news station. The picture will be on the front of the TS Walk brochure. I hope she behaves! Please continue to keep Zoey in your prayers, as she continues to heal, as well as for my cousin BJ, who is in Iraq, that our new gilr will be healthy(!) and of course, that Kylie continues to be free of seizures. Thanks for continuing to check in with us. Your support is amazing! Much love to you and yours-
Maria, Neil and Kylie Jo (and our little girl coming anytime!)

Monday, January 16, 2006 8:31 AM CST

Good morning from the land of the sleep deprived. We had a LONG night. It started last night, when I had to go into the hospital for what the dr thought was the start of pre-eclampsia. Thankfully, by the time we got settled, my blood pressure was lower and the pain had gone away. Unfortunately, I am further dilated and was contracting every few minutes, (guess I shouldn't have re-arranged the living room on saturday?) The dr wants this baby to wait at least until this saturday to make an appearance, so she will not allow me to work or do anything else until I see her again on friday. Hopefully I get the green light then to start working again, as I am supposed to work all weekend. I told this baby she needs to wait until after next tuesday to make an appearance, as that is the day Kylie is having surgery. So, I am going to have a boring week. As long as I am laying still, the contractions are not too bad but as soon as I start moving around, they start up again. So, after all that drama, we came home and I went to bed. Kylie decided to wake up around 130 am and stay up until 530am. She was very crabby and crying for most of the time. We have no idea why she got up, except that maybe she had a headache from her sinuses. Neil was nice enough to stay up w/ her so I could get a little sleep. I just snuck her morning meds in her and she slept through the entire thing. This week, she sees the infectious disease dr on wed and has her pre-op physical w/ her ped on thursday. Praying both appoinments will be uneventful. I really pray she won't have to get a central line during surgery. That will just be one more thing to try and keep her from wrecking. She has become quite the mobile little lady lately. Our poor dogs and cat can't seem to get a break from her. She loves pulling their collars, (and tails and ears). We try to keep them all away from each other but they LOVE the attention she gives them. We want to extend a HUGE thank you to our parrish, Maternity of Mary church, especially to the 8th grade confirmation class, who sold "Kylie's Hope" bracelets at mass yesterday, and to all the wonderful people who bought them. Thank you from the bottom of our hearts! I am so happy to report that Kylie has made it to week 7 without a seizure! For those of you who don't know her, this is the longest stretch she has ever gone without one, since being diagnosed last feb. We are so blessed to have been given this miracle, no matter how long it lasts. Thank you all for the continued prayers for Kylie's miracle. I truely believe she wouldn't be doing as well as she is without all of you. Have a wonderful day! Love Maria, Neil and Kylie Jo

Thursday, January 12, 2006 11:42 PM CST

Good evening. We are home after a very long day. To start off the morning, Kylie and I were rushing to get to her 1015 infusion appointment and of course, I left the dome light on last night and my truck wouldn't start. It was Karen and the 15 passenger van to the rescue. We arrived about 15 minutes late to our appointment, which ended up taking 6 hours, not the 3-4 we were told. Kylie did great getting an iv- no tears for this girl, even though it took 3 pokes and 2 arms to start. They first drew her blood, than ran the medication over a half hour, then drew her blood 1 hour after and 4 hours after the infusion finished. The last draw did not go so smoothly. Her IV went bad and she screamed bloody murder, even kicking the nurses when they were trying to draw her blood. I guess a little kid can only take so much. They then told us we had to restrict her fluid intake to 15 oz for the next 24 hrs, as the kidneys don't process well during that time. We should know by monday if this med will work for surgery or if she will have to get a blood product instead. She tolerated the procedure well and the only real side effect we noticed was some severe flushing of her face. A side effect could've been seizures, so we are glad we didn't get that one. After the procedure, we rushed off to Grandma Ueland's wake/funeral. It was a beautiful service and I think she would've loved it. Thanks to those of you who attended- it means a lot. We grabbed dinner w/ my family after and just got home. Tomorrow I see the OB in the morning and then we have the burial to attend. This weekend we are just going to keep things low key. We got Kylie's PT eval back from Gillette and we were happy w/ the results. There are 4 seperate tests, although they only did 2 w/ her but of the 2, she scored at a 14 mo level on one and a 16 mo level for the other, (she is 15 mo now). They are recommending PT 1x a week. I'm beat so I'm going to turn in. Thank you all for your loving thoughts and prayers this past week. Please continue to keep Kylie in your prayers, as well as for my cousins- Julie, who is having a difficult pregnancy, and BJ, who is fighting the war in Iraq. Much love- Maria, Neil and Kylie Jo
PS Big thanks to Sue for taking care of our dogs

Tuesday, January 10, 2006 9:15 PM CST

Good evening. A few people have asked if I could post the funeral details, so here they are- Grandma's visitation will be from 4-630pm on thursday and the funeral will be immediately afterwards at 7pm, all at Transfiguration Church in Oakdale. The burial will be friday morning w/ immediate family. Grandma planned out all the details yesterday morning. She wanted it in the evening so people don't have to miss work and the burial to be immediate family because she was worried about her friends slipping and falling on the ice. She wants her grandsons, the pallbearers, to dress casual, so they don't have to go out and buy suits. Even in her final moments, she was thinking of others, truely her style. She will be buried in her pink jogging suit, per her request. =) We rescheduled Kylie's DDAVP procedure for thursaday morning. We have to be at Children's hemetology/oncology clinic at 1015 thursday morning and the procedure will take 3-4 hours. Hoping all goes well and we won't run into time delays. Big thank you to my mom, who watched Kylie for me today so I could catch up on sleep. Kylie had a great time at daycare and can't wait to do it again. Even though I got caught up on sleep, I feel like I was run over by a truck and slept a few more hours this evening and plan on turning in early. Kylie has been getting up at the crack of dawn, so I have to be ready for her in the morning. Please continue to keep Kylie in your prayers and that the seizures will stay away. Today old feelings came back, as I though she was going to go into one a few different times. She didn't, but I'm going to keep a close watch on her the next few days. Much love- Maria, Neil and Kylie Jo

Tuesday, January 10, 2006 2:50 AM CST

Kylie has a new angel watching over her. Grandma Ueland passed away just after 11pm, about 10 minutes after we left her house. We went back and just got home now. We are so happy that she is not suffering anymore but we will miss her like crazy. She was a truely wonderful person and we are so blessed to have had her in our lives.

Monday, January 9, 2006 11:50 AM CST

Good morning. The weekend seemed to fly by, although it was a pretty low key one for us. On friday, Kylie had her OT/PT re-eval at Gillette and did great. We don't have the PT results back yet but for OT, she scored at about a 12mo level (she is 15 mo now), which isn't too far off. She was sort of "in a mood", so she didn't completely show everything she could do but both therapists were pleasantly suprised at far she has come since the last time they saw her. We saw Zoey and her mom in passing and Zoey looked great! I saw the OB and there wasn't much change from last week, so we are doing good. We pretty much just hung out the rest of the day. On sat, I got together w/ my girlfriends for lunch- it was so great to catch up with them- and when I got home, Neil went ice fishing for a bit. Kylie and I went to Kari's basketball game, which they won (Go Bulldogs!) Sunday was a cleaning day and Kylie and I went out to dinner w/ my mom and sister. I have decided our days of dining out w/ Kylie are about over. Since she has stopped having seizures, she has become super busy and very vocal. At home, she is trying to get into everything, which we love to see! Today we saw the hemetologist, who confirmed that Kylie does have von Willenbrand disease and we should assume that it came from me, (as we have a family history of it). The dr said one parent has to have it in order for Kylie to have it. So, on friday we will be going back to the clinic and they will hook her up to an IV and give her a med called DDAVP, which should raise her levels to clot blood. It will be done over about three hours, so we are in for a long day. If it works, than this is the med they will give her before surgery on the 24th. If it doesn't work, than she will be given a blood product instead. If she were to have major surgery, such as if they do brain surgery, than she would have to have the blood product for a few days before surgery. So, lets hop it works the 1st time! The dr did say that if I am to have a c-section, I will need the DDAVP prior to surgery. The OB did test me for the disease last week but the results are not back yet and apparently will be inaccurate because I am pregnant. BUt, friday is the only day we have appointments this week, so we plan on just taking it easy, (well, I do at least). Kylie has been pretty crabby on and off and today decided to get up for the day at 430am. She is on an antibiotic but is acting like her head is hurting. Hoping that surgery will make her feel like a new kid. I am going to try and grab a nap while she is down. Please continue to keep all our kiddos in your prayers, especially Zoey, as she continues on her amazing journey, for Caroline, who now has RSV on top of things and of course, for our sweet girl, who has just hit the 6 week mark without a seizure! It has been so nice being able to truely enjoy her as a person, instead of a medical crisis. We are loving every minute of it and pray that it continues. Love to you all- Maria, Neil and Kylie Jo

Thursday, January 5, 2006 5:50 PM CST

**New pictures in photo album
Good evening. We saw the ENT dr today and he said Kylie's sinus CT looks pretty bad. She is completely blocked w/ infection, so when he takes her adnoids out, he will drill holes in her sinus cavities, suction out all the infection, send it out for a culture and completely wash her sinus cavities out. He will also replace her tubes and wash out her ears. He said that he does not like doing this surgery on kids her age, because it is a more difficult healing process and because the sinus cavities are so small, they tend to get covered in scar tissue and she would have to have the procedure again. He also referred us to an infectious disease specialist, (another "ist" to add to our ever growing collection), as he thinks that she either has an immunodeficency problem or possibly has an infection that is resistant to antibiotics. Depending on what the ID dr says, he may place a central line while she is in surgery and then she would get IV antibiotics for awhile to clear up the infection. Basicly, she has had this infection for months (her first sinus infection was in april) and no matter what med we give her, they continue to come back, most likely never clearing up. So, monday we see the hemetologist to discuss the von Willdebrand disease and will dertermine if she needs blood products before surgery, we see the ID dr on the 18th, have another pre-op physical on the 19th and she will have surgery on the 24th. Somewhere in between she will have a bunch of labs drawn. We are praying the baby waits until the end of the month to make her appearance and not during the midst of all our appointments. After seeing the ENT, we headed over to great-grandma Ueland's house and brought her a little bit of spring w/ us (pretty flowers). She had a pretty good day today, after having a pretty bad one yesterday. Last night, we had family game night at my parents' house and had a blast, until my dad got so excited he got a question right and started screaming, waking up Miss Kylie. She was not too pleased. =) Tomorrow I see the OB in the morning and Kylie has her 2 hr PT/OT eval at Gillette. We can't wait for them to see what progress she has made! Hope you all have a good night! Love Maria, Neil and Kylie Jo

Wednesday, January 4, 2006 12:41 PM CST

Today seems to be a bit of a better day. Kylie is in a much better mood, as am I. I got out for a few hours last night to a movie w/ my sister and it did me a world of good. I spoke w/ a few doctors today and we are still waiting to hear back from the hemetologist. The doctor who specializes in von Willdebrands disease doesn't have an opening until the 16th but they are trying to squeeze us in sooner. We have an appointment tomorrow afternoon w/ her ENT dr, to go over the results of her CT scan. This should determine if she definately needs her sinuses done. As soon as we see the hemetologist, then we can re-schedule her surgery. They will give her something to prevent bleeding prior to surgery. On friday, we start therapy again at Gillette. She will have a 2 hr re-evaluation to determine how often she will be receiving therapy. I have an OB appt in the morning, so I will be meeting Neil and her there. Kylie is really coming so far developmentally and is keeping us all entertained. My sister taught her how to fake cough, which she is doing all the time, looking for a laugh. We watched the Rose Parade on tv monday and Kylie was waving to everyone on tv that was waving. She sits up tall on her knees in the middle of the room, but still can't stand on her own. She is getting a little naughty, pulling hair and pinching but is around adults all the time who laugh at her, so she thinks it is all fun and games. We are re-starting the Augemntion for her sinuses, which I am super reluctant about, as it was part of her dehydration problem that landed us in the hospital last time. I am waiting to hear back from the ped today to get the results of her allergy test back. Big thank you to Kylie's Uncle Ben, who waited in line at 4am yesterday to reserve Como Pavillion for the TS walk. The date is going to be May 7th. Anyone is welcome to join us. After a very lengthly discussion, Neil and I decided to post-pone the trip to Detroit indefinately, unless she starts to have seizures again. Hoping we will never need to make that trip but at least we know it is an option. Please continue to keep Zoey and Caroline in your prayers, as they both continue their very long hospital stay. Have a great day! Maria, Neil and Kylie Jo

Tuesday, January 3, 2006 10:38 AM CST

2006 is turning out to be not such a bang up year. Kylie's surgery was cancelled today, as we found out while we were in pre-op that she has von Willebrand's disease, which is a congenital bleeding disorder caused by a deficiency of coagulation factor VIII. One more item to add to our lovely array of genetic flaws. The only reason we had her tested was because my cousin Julie kids have it, so the ped checked Kylie to be on the safe side. Now, we have to see a hemetologist before she can have surgery. She is on the brink of another sinus infection and has been super crabby today, so we will be starting yet another antibiotic. I am so irritated right now- this set back is going to push us right back to when then baby is due and cause even more chaos. I just wish for once things could go smoothly. Well, I will update more later when I speak w/ the ped again. Maria

Saturday, December 31, 2005 7:13 AM CST

Happy New Year! I can not believe how fast this year has gone by. Last year at this time, we were enjoying our sweet, healthy baby girl. Little did we know what 2005 would hold for us. Feb will be a whole year since Kylie's diagnosis but it still seems like just yesterday. We spent so much of the year in the hosptial and going to dr appointments but they have gotten us to a good point- Kylie has been seizure free for almost 5 weeks. I can hardly believe it and praise God every day for this miracle, no matter how long it lasts. This was the year that we would learn that we will be saying good-bye to a most beloved member of our family. Grandma Ueland has most likely a few weeks at best. We are praying her remaining time with us remains peaceful and comfortable. This year my 24 yo cousin was also diagnosed with cancer and we pray everyday she will beat it. We also had many good experiences this year. My brother Andy finally moved home and is here w/ us again in MN. He will most likely be deployed in the next year or so, so we are praying hard that God keeps him safe. He also married the love of his life, Andrea, who has become a wonderful addition to our family. We have met so many wonderful people both through this web site and through 7940, people that have been rocks of support when we thought we just couldn't make it through another day. 2005 was also the year we found out we were expecting a big suprise- Kylie's little sister. She is going to be our joy of 2006 and we can't wait to meet her. We had to go back to hospital last night so I could get another shot of betamethazone, (a steroid to help the baby's lung develop, since she seems to want to come early) and I had a special test done to see if she would most likely be born in the next 2 weeks. The test was negative thank goodness, so as long as I keep her in for 3 more weeks, we should be good. On the was to the hospital, we had a minor car incident, (Neil and I beg to differ on what to call it) but he was driving a bit too fast for the road conditions and slid up, over the snowbank and almost into a light pole, then back into the street. I didn't get hurt but the seat belt tightened pretty good on the baby and I could feel her jostle over to the side, (I will be driving myself to the hospital when I go into labor). So, because of that incident, we had to spend 4 1/2 hours at the hosptial getting monitored. They watched her heartbeat and my contractions. I had a few when we got in there but the contractions were pretty quite the rest of the time. The baby was a wild one though. She was moving all over the place and they had a hard time getting her to stay on the monitor. She is much more active than Kylie ever was, so we are wondering if this is a sign of things to come? We took Kylie out in the snow yesterday and she loved it. I will try and post some pictures later. Her CT yesterday went w/o a hitch and surgery is still scheduled for tuesday. That's all for now- may you all have a very blessed 2006 and thank you all for walking this journey with us. Much love to you all- The Gibbons Family

Thursday, December 29, 2005 6:47 PM CST

At our house, when it rains, it pours. Today,I went into preterm labor. But let me back track. Yesterday Kylie had her pre-op physical and then went to have labs drawn. She did pretty well and only had to be poked 2 times. She is also slowly gaining back the weight she lost in the hospital. We went out to luch w/ Grandma Karen, Kari and her friend, then went to the mall. We were only there about an hour and then I decided I needed to go home. This morning, my mom picked us up and we took Kylie to her feeding clinic appt. The little squirt wokw up at 530am, so it has been a long day. We got a lot of good tips on herlping her eat. They tested her for sensory stimulation problems, which she thankfully doesn't have. They agreed that she most likely is having eating issues from being on so many meds for so long- she is just sick of it. So, we are going to start blending up the same foods we eat every day and offering her that, to see if she prefers the taste. Theya re a little concerned about her weight staying the same for the last 6 mo, so we will be working on getting that up and rechecking it in a month. After that appointment, we went to 7940 to visit w/ Kylie's friends, Zoey and Caroline. Both firls look good and it was nice to catch up w/ their moms. The nurses came in and stole Kylie for a while, so they could catch up. It's nice for them to see her when she isn't sick. After tha we planned on going to visit Grandma Ueland (my grandma) but then found out she was in the ER and was being admitted to my floor (convenient!) Since we we were already there, we went up to see her. Seeing Kylie always puts her in a better mood. Grandma is going to be getting a peg tube tomorrow, which she will then be able to take her meds through. Please pray that this surgery doesn't add any unneccessary discomfort for her. It is so hard to see her suffer. We figure that she has a few weeks, at best, left. I pray that time will be filled w/ comfort for her. After the visit, we went out to lunch w/ my dad's family, then I went in for my OB check-up. Much to my suprise, I am already dilating and because I have been having contractions, my doctor sent me over to the birth center to see if I was contracting regularly. Sure enough, I was having contractions about every 6 minutes (and these are the ones that I didn't feel!) They gave me a shot of trabutiline (sp?) to stop the contractions and a shot of prednisone to help the baby's lungs develop. My contractions stopped, so I got to go home but I have to go back tomorrow for another shot of prednisone and for a test to see if the baby will be early. If the test comes up positive, I will most likely go into labor in the next 2 weeks and will then have to go on bedrest. If negative, I can continue to work but I am done working 12 hr shifts. We really need me to continue working for as long as possible, so please pray the test will be negative. We have to be at the hosptial at 730 am tomorrow for Kylie's sedated CT- hoping that goes well. Her surgery is still scheduled for the 3rd. We decided to cancel the Detroit trip for the time being. We have too many balls up in the air at this point, so we will wait until the end of March/ early April to go. We pray that Kylie's seizures will remain under control during the mean time. So anyhow, that was our day in a nutshell. Pray the sun begins to shine soon! Much love- The Gibbons Family

Tuesday, December 27, 2005 11:26 AM CST

UPDATE: Kylie will have a sedated CT scan on friday morning and surgery is scheduled for tuesday (the 3rd). Hopefully all will go smoothly. We are just waiting to hear tomorrow if she will still be able to fly the 12th, as the doctors don't like these kids to fly for a few weeks after surgery. Her labs came back normal and Dr Frost isn't worried about the tongue thing- he said it could be a side effect of the felabtol, but we will just watch and see. We have a pre-op physical tommorow and labs. That's all for now.
Good morning. I talked to Dr FRrost's office this morning and we are set up to go to Detroit Jan 12 & 13. She will have a scan on the 12th at 1200pm and at 8am the 13th. We are now hurring to get flight details arranged. They said she will be radioactive after her scans, so I will not be able to hold her, not to mention that I will be so close to my due date, that I will most likely not be going with. =( My mom will take my place and I will stay home to help w/ her daycare. Her first plane ride and I will miss it. The 13th is the day she is supposed to have her adnoid surgery, so I am waiting to hear back a new date. She also needs to have a new CT of her sinuses, in case they still need holes drilled in, they can do both surgeries at once. We are going to have a busy week. She goes to the feeding clinic on thurs and I have an OB appt, so I will see if we are any closer to having this baby early. I also have to get Kylie in for a pre-op physical and for labs. Wish us luck! I will keep you all posted. Maria

Monday, December 26, 2005 1:23 AM CST

Hi all. What a weekend. We ended up taking Kylie in to the doctor on saturday morning because she was so lethargic and had green coming out her nose- you guessed it, another sinus infection. She slept for most of the day sat, waking up once in a while but what definately not herself. She was started on yet another antibiotic and after being on it 24 hours, she was a totally new kid. So, I have to call the ENT dr tomorrow to see if we have to get another CT before surgery, as he was going to do her sinuses if she had another infection. I would rather her have both surgeries at once, instead of having to be put under twice. I am also calling Dr Frost's office tomorrow, as I called about 2 different things last week and still haven't heard back. My main concern right now is this thing she is doing with her tongue. She keeps sticking it out for no apparent reason and it is REALLY bothering me. My gut says there is something wrong and that she should not be doing it. We also need her lab results back, as well as to discuss her Detroit trip. I definately won't be going w/ if we go before the baby is born. I still am having a lot of contractions and my back is miserable. I was supposed to take it easy this weekend, which, for the most part, I did ok with. I see the OB this week, so we will see what she has to say. I just hope my gut is wrong about Kylie but so far, no such luck. Every time I think there is something wrong or off about her, it usually turns into more than I thought it was. She needs to have more labs drawn this week and we have an appointment at the feeding clinic, so we have a busy week ahead of us. Our little peanut is STILL awake right now, having a grand time playing cards w/ her dad, Uncle Ben and his friends. We took her to midnight mass last night, which she slept through but woke up as soon as we got home and stayed up until 330am. We may be going back to the melatonin. Last night we dropped dinner off for Caroline's family and I got a chance to peak in on Zoey. She looks so peaceful, almost angelic. It was so good to see her mom and catch up for a bit. Please continue to keep Zoey in your prayers. I am turning in for the night. I hope you all had a very Merry Christmas- Much Love, Maria, Neil and Kylie Jo

Saturday, December 24, 2005 8:31 AM CST

Merry Christmas! I can not believe how fast this past year has gone by. Last year, we had a little butterball who didn't do much besides sleep and puke. =) This year, we have a beautiful little angel who has stolen the hearts of all who meet her. We are so thankful to God that He has allowed us to have a break from the seizures. It has given us the chance to experience what most of you get to have on a daily basis- normalacy. We are cherishing every single moment of it. When Kylie was diagnosed w/ TS nearly a year ago, I was so mad at God and blamed Him for my little girl's suffering. It took me most of this time to realize it was not His fault- sometimes these things just happen, but I believe, for a reason. Her diagnosis has brought so many different people together, has caused so many people to start praying, (many who hadn't done much in the past- myself included), and has given us the opportunity to believe in the power of a miracle. This Christmas season, we are praying for Kylie's miracle. I truely believe that having 38 seizures one day and the next day they just stop, is the miracle we have been praying for. Now I pray with all my heart that it continues and if not, I thank God that He has led us to the best doctors and that surgery will give Kylie a normal life. I also pray for the newest miracle growing inside me. It is a miracle in itself that she is even with us. When I found out I was pregnant, the doctor did an ultrasound and told us she was 95% certain I was going to miscarry. I spent the weekend in bed, praying to God that if it was going to happen, let it come fast and that I would except whatever His will was. My heart was breaking. I went in the following week for another ultasound and the baby looked better, as did the next two. The doctor couldn't explain it. At the time, we were not planning on having any more kids, as we didn't know if one of us gave Kylie her TS. During this time, we got our results back- negative! After 7 ultrasounds, this baby looks perfect- the baby we weren't planning on and the one we were told wouldn't even make it. I truely believe that she is here because of the power of prayer. Now, we are praying that she stays put for at least 4 more weeks. I talked to my doctor's office yesterday, about my back pain/contractions. I was told to not do much for the next few days except lay around and rest, (yeah right) and if things got worse, to come in. My back feels better today but I did have a few contractions during the night, a little stronger than the ones I have been having. Kylie looks like she is coming down w/ another sinus infection. If she is, we will have to get it cleared up before surgery, which is on Jan 13th. Hoping it doesn't develop into a nasty one. Today, my family is coming over in a few hours for brunch, then we are heading off to drop Christmas dinner off at the hospital for Caroline's family, then to my Gram's to spend the evening. We are planning on midnight mass if Kylie coroperates. Tomorrow, we will spend the morning at my mom's, then the afternoon at my uncle's and I work for 4 hours tomorrow evening. Please keep Zoey and Caroline in your prayers, as they are spending their Christmas on 7940. Also, please keep Mary, Jessi, Jonathan, Drew, Jess, Katie, Jason, Elaina and Casey in your prayers today- may they all have a healthy Christmas and New Year. Thank you all for your continued prayers and support- knowing you are all behind us means so much, May all your Christmas wishes come true. Much love- The Gibbons Family

Thursday, December 22, 2005 10:22 PM CST

Good evening. Kylie and I had a girls' day in today. We made some Christmas ornaments, read some books, and took a nice long nap. She did have a vomitting episode this morning, which I think I cause by giving her meds to her too fast but she did ok the rest of the day. I, on the other hand, have been having contractions off and on and my back is absolutely killing me. I am trying to carry Kylie as little as possible, but it is hard w/ her not walking. Neil brought me home a back massager that fits in a chair, so I am going to try that the next few days and see if it helps. We are really hopinh these back pains are not early signs of labor! I finally spoke w/ the people at Gillette today and we got a new doctor's order to have her re-evalutated for PT/OT. Neil is hopefully going to arrange his schedule so he can take her. We stopped giving her melatonin tonight, so we are hoping that she will go to bed at some point tonight. We went to Kari's basketball game tonight and Kylie had a great time pulling the hair of anyone w/in a 2 foot radius. Our friends on 7940 hae come through surgery w/ flying colors but still need your prayers. Zoey had her hemispherectomy and actually moved her right arm after surgery! (Not expected) She still needs tons of prayers but seems to be moving in the right direction. Caroline also had her GI surgery and is recovering well- now we just need to pray for her dang seizures to stop. Kylie continues to be seizure free (praise God!) She has been doing something w/ her tongue for the last few days that is really bugging me but I don't think it is seizure related but may be neurological, (or she just misses the sensation of her pacifer when it is out) =). I am hoping Dr Frost's office will call me back tomorrow about her lab results, so I will ask them then. I still haven't heard back about Detroit, so I will be calling the surgery scheduler as well tomorrow. We need to get the ball rolling! I spoke w/ a few people whose kids have gone to Detroit and they don't think that Kylie would have to be actively seizing to have the scan done, but I will ask for sure when I speak w/ Dr Frost's nurse. I'm going to try and fix my back but have a wonderful night. Much Love- The Gibbons Family

Wednesday, December 21, 2005 10:41 AM CST

Good morning. Today I am asking for special prayers for out friend Zoey, who is undergoing a hemispherectomy of her brain. Pray that she comes through the surgery ok and has a good recovery. Kylie had her 15 mo check-up today and got a bunch of shots. Only 2 more shots to go and then no more until she is 5! We were supposed to go get her labs drawn for her allergy testing and to check for some bleeding times, but we were too tired. We will have to go back later this week. We have her adnoid surgery scheduled for Jan 13. She will stay overnight and then hopefully go home the next day. We are still waiting to hear about the trip to Detroit. It is looking more and more unlikely that I will be able to go with. I have been completely exhausted lately and have barely been able to get through work. I can't wait fot this baby to get here! Kylie continues to do well and her ped is amazed that she is doing so great despite all she has been through. She is such an amazing kid and we are so thankful that she is in our lives. Much love- The Gibbons Family

Monday, December 19, 2005 4:37 PM CST

Good afternoon. This is try #2 to update so I hope it works. What a busy day. We had our final ultrasound this morning to check on baby girl #2 and she looks perfect! No signs of TS and with Neil and I both testing negative, they think it's highly unlikely she would have it too. They will do a blood test when she is born to confirm it. Pray, pray, pray she stays healthy! Only problem is that she has the Ueland head (huge) and Perlt nose(not much smaller) but maybe that means she will look like mom! Another big suprise is that the baby already weighs close to 5lbs and they are expecting her about 2 weeks earlier than we thought, so we are expecting her the beginning of feb instead of the middle. We better start getting ready! This kind of puts a damper on the Detroit trip. I can only fly for 2 more weeks, so I doubt that I will be able to go. My mom may take my place and go w/ Neil, so I would hold down the daycare. We are waiting on a call back from Dr Frost's office to tell us when we can go. We are also waiting for Children's to call back and let us know when her adnoid surgery is. After the ultrasound, Kylie had her labs drawn and was so brave. Only a few tears for 2 pokes. We visited Caroline on 7940 after the lab draw and brought them some Christmas treats. I plan on bringing dinner down for them on Friday night and am hoping to help them out w/ Christmas dinner this weekend. Caroline needs lots of prayers right now and we are hoping they get to go home in the next few weeks. We would also like to do something for the staff of 7940. They are such an awesome group of people and took such great care of Kylie. After our hospital trip, we headed home to make cookies, until our fridge/freezer died. It even smelled like it was starting on fire a bit, so we are on the hunt for a new one. We spent the afternoon looking and after a few contractions and a horribly sore back, we are taking a break. Yesterday, we went to church w/ my parents, out to lunch and then Kylie hung out w/ grandma & grandpa while we grochery shopped, (and of course all the food is sitting outside now) and then I took a long nap. Kylie and I went to my girls x-mas party last night but she conked out early, so we were in bed by 845pm. Neil is busy palying boot hockey, which we will never go watch because it is too cold! We are loving our seizure break and pray that it continues. I will update when we have some surgery/flight dates set. Bundle up! Much love- The Gibbons Family

Saturday, December 17, 2005 8:36 PM CST

Good evening. We got the final confirmation for our Detroit trip today, so the appointment will be made Monday, then we will most likely leave in 2-3 weeks. We need to schedule her adnoid surgery first, but I will most likely make her surgery for after the Detroit trip. Her scan will be done at Children's Hospital of Michigan. This will be Kylie's first ride on an airplane. Hoping she does ok (and that mom does too!) I have what is hopefully my final ultrasound on Monday and get the ok to go. Kylie is still doing fabulous, almost 3 weeks without a seizure (knock on wood!). We have been having such a wonderful time having some "normal" time with her. She has been pretty restless at night and it seems like she is having nightmares, so we still aren't doing great with the sleep issues. We still aren't getting a whole lot of food in her either, so she is taking a few bottles of pedisure everyday. She has a new game that she loves- she lifts up my shirt and kisses my big belly, pokes at my belly button, and giggles & giggles. If I don't let her do it, she starts whining. It's pretty funny, except when she tried to do it in the middle of Herbergers- we got some strange looks. We spent some time at Great-grandma Ueland's house yesterday and today. She is still doing pretty good and is actually doing her own trach cares. She is getting a feeding tube next month. Big congrats to my brother Andy, who got hired w/ the Richfield Police Dept and starts a week from monday. He and Andrea also bought a house near us recently and have been busy painting. Hope you are all having a good weekend and we will check in with everyone later. Please continue to keep Kylie in your prayers, that this seizure control continues and that we can avoid brain surgery. Also, please keep Kylie's friends Caroline and Zoey in your prayers (Zoey is having surgery on the 21st- I am also adding Caroline's link to Kylie's home page.) Also please continue praying for all of Kylie's friends that are doing well, that they continue to do so. Much love- The Gibbons Family

Wednesday, December 14, 2005 9:32 PM CST

What a beautiful winter day! Not much to update except we got some suprising news today. My insurance company already approved the trip to Detroit and we are just waiting on a confirmation from Kylie's other insurance. I talked w/ the lady from MN Epilespy Group to schedules the trip and she said it will be a make of 2-3 weeks from the time we get the confirmation. Basically, we will be going sooner than later, most likely before Jan 20th, the latest I can fly. This makes things seem so much more real and I don't know if I'm ready for it! I will also need to get over my fear of flying real quick. For those of you that don't know, during the trip to Detroit, Kylie will have a special scan of her brain that shows where the tubors are, how many and which ones are "hot" for seizure activity. Once that is done, we come home, the drs compare the results w/ her EEG and if things still look like a go, approximately 4 weeks later Kylie would have surgery to place a grid on her brain, where they would then test to see if her seizures are coming from areas of motor function. If they were, then there's not a whole lot they can do. If not, she would have a second surgery approximately 5 days later to remove the tubor/area of seizure activity. Thinking about it makes me sick to my stomach, while at the same time excited that the drs could maybe give her a shot at a normal life. For now, we are praying the seizures will stay away and that by some miracle, she won't need the surgery. We had to re-schedule the feeding clinic appt, as today's was right during nap time. I am happy to report she slept through the night, for abot 12 hrs. Gotta love that melatonin. Grandma Karen and Auntie Kari babysat tonight so Neil and I could have a "romantic" date. We went out to dinner and then finished Christmas shopping. After three stores, I could waddle no more, so we headed home. That's all for tonight. Thank you for your continued prayers!

Tuesday, December 13, 2005 8:57 PM CST

Good evening. Good thing I checked my calender last night because our ENT appt was today. Good news- Kylie passed her sleep study! They did not find any episodes of apnea, although with her being awake for 50% of the test, I hope their results were accurate. But we will take it. The dr is going to proceed w/ her adnoidectomy, which should take place right after New Years. He is also going to "wash out" her ears and sinuses, (whatever that means), and also possibly replace her left ear tube, which has gotten pretty crusty w/ all her drainage. She will have the surgery done at Children's and stay hopefully just overnight. We are continuing to enjoy our break from seizures and Kylie is particually enjoying it around 2am. She was awake until 3am last night, so we re-started the melatonin and are crossing our fingers for tonight. It is so hard to get mad at her though, because she was in a great mood the whole time, screeching, laughing, and bugging the dogs. I was not as amused. We spent the morning catching up on our beauty sleep, then hit the mall for some last minute Christmas shopping. I had a nice dinner out w/ some girlfriends and I am going to turn in early tonight. We are going to the feeding clinic tomorrow but I am happy to report that Kylie ate an entire big jar of baby food at lunch today, a huge improvement from a few days ago but still a ways from where she was at. Neil had to neb her tonight, as she was sounding pretty junky, so please PRAY we will have a healthy christmas. I need to try and get ahold of her therapists this week, as she is no longer scheduled for therapy at Gillette and I really don't want her getting behind. We need to strengthen those legs! I forgot to mention last night a quick prayer for my Uncle Gor, who is recoving tonight from a stent placement. I think the New Year's resolution for the Ueland family in 2006 is to stay away from hospitals and for everyone to strive to be HEALTHY! Well, that's all for now. Have a great night and careful driving in the snow tomorrow. Love The Gibbons Family

Monday, December 12, 2005 2:28 PM CST

Ahhh, it's good to be home. I never expected we would be spending so much time in the hospital lately (21 days to be exact) and we are not looking at going back anytime soon- Kylie agrees. I PRAY she is not getting sick but her nose is running this afternoon and I will bet you ten bucks I know where she caught it from, (but that's another story). Anyhow, she is in a great mood and is back to happily feeding Buster all her food. She did eat better today but was awake until 2 am for the second night in a row. Neil stayed up with her last night while I crashed. Dr Frost's office called this morning and everything has been submitted to our insurance company for out trip to Detroit for the PET scan. Once insurance approves everything, then the appointment will be made and we will get our fly date. We are not counting on flying before the baby is born, so it may make for an interesting trip. We see the ENT dr on Wed and will find out then when to expect to have surgery on her adnoids and possibly sinuses. We will also get her sleep study results back. I see the OB this week, then a week from today we have our final ultrasound, to make sure the baby is still doing well. Please pray she is HEALTHY! Kylie will get her labs drawn after that, so it should be a long morning. Kylie seems to be doing ok w/ drinking milk again, although she was a little bit puking this morning- just a tiny amount. Please keep many of our friends in your prayers- Caroline, who is getting a feeding tube today; Zoey, will will be having her hemispherectomy next week; for Jess, who will be having the second part of her brain surgery in feb; for all the other kids on 7940, who have shown an tremendous amount of strength during a very difficult time in their lives, as well as for their families. Pray they get to spend Christmas at home. Also, please keep Great-grandma Ueland in your prayers, as she prepares to spend her final Christmas w/ her family, and for my cousin BJ, to keep him safe while he fights for our country. Also during this Christmas season, please keep some special mommies in your prayers- Julie J, Julie P, and Shannon, as they prepare to celebrate the season without their special babies, that they may find comfort knowing their kiddos are now angels, who I like to think of keeping watch over my babies. And finally, for all of you moms in my life, whether your children face many challenges or whether they are completely healthy, I pray that your children continue to improve or continue to stay healthy. Never take a single moment with you family for granted. We never know when that moment may be taken away from us. Hope you all have a great week and thank you for your continued prayers! Much Love - The Gibbons Family

Sunday, December 11, 2005 0:07 AM CST

Good evening. If all goes well, we will be going home in the morning! Kylie is still not eating well but has been drinking a fair amount and not throwing up. She has also been taking her meds better too. Her IV went bad today, so she finally got that out. She was working on crawling today, but was having better luck going backwards that forwards. She has been having a horrible time being able to nap since we have been here, with all the noise, so she has been falling asleep late evening whenit quiets down, but is now wide awake. Grandma Karen is rocking her, hoping to get her to sleep. I worked from 7-1130 tonight and ended up getting the last 8 hours off because we were overstaffed. What a nice suprise! I never would have made it. I have been having more frequent contractions and they have been worse when I work, so I am thinking 12 hour shifts are not the way to go. But, we are super excited to go home and are keeping our fingers crossed the seizures and puking will stay away. Hopefully my next update will be from home! Love Maria

Friday, December 9, 2005 9:45 AM CST

**Update: We will be in the hospital until sunday morning, as long as she continues to do well. She has drank about half of what she needs to today. We are going to re-introduce milk in the morning. If she statrs vomiting, no more milk and we will stick w/ pedisure. He can't believe how well she is doing considering the meds she is on. Keeping our fingers crossed we will be home sunday.
Good morning. Not a lot to update right now. Kylie's drug levels all came back ok, so she is not toxic. We do think she has become lactose intolerant and has not drank any milk during this stay, hence no vomitting. She wil be drinking pedisure instead. Sometimes I feel like I am raising a 90 year old woman instead of a toddler. Speech therapy saw her this morning and agrees that she has some serious eating issues. They want to see her on an out patient basis as well. They aren't sure if it because of meds, because of her reflux or maybe that she just doen't get to move the food to the back of her mouth. They are going to come work w/ her at lunch today. Her IV fluids were stopped to see if she can hydrate herself on her own. Her Zonegran is being weaned so we are hoping not to see seizure activity. My guess is that we will go home today or tomorrow. We have not seen Dr Ritter yet, so I will update later. Huge thanks to Jessica, for the awesome dinner last night, and to Alyssa, for the awesome dinner on sunday. We really appreciate it! Andy, Andrea, Kari, Jody and Jeff stopped by last night- thank you all. Great-grandma is going home today- yeah! Kylie had a great time last night trying to pull grandma's trach and heart monitor off. Kylie is crabby today, so we are off to nap. I will update later. Maria

Wednesday, December 7, 2005 11:51 PM CST

UPDATE: Thank you God! After visiting Kylie at the hospital last night, my brother Andy got hit head on by a drunk driver. His car was completely totalled and there is no way he should've survived, much less walk away without a scratch. This christmas season we will be thanking God for this awesome miracle.
Good evening. I just got off work but wanted to update after I spoke w/ Dr Ritter this afternoon. We plan on being her at least through tomorrow, possibly into the weekend, depending on how she does. He wants to keep her on the IV fluids for a bit, as she was pretty dehydrated. She was pretty puffy this morning, so they slow her fluid rate down a bit. But, she was up in weight about a pound from yesterday. She did not vomit all day and drank a small amount of pedialyte. We are wondering if she is becoming lactose intolerant, as she seems to throw up seemingly wheneve she has milk. He also said of the 4 seizure meds she is on, 3 can cause reflux, (which she already has) and that he concerned that her pancrease may be being damaged from the high amounts of meds she is taking. He is lowering her zonegran and if she seems better over the next few days, he will leave it at that. If not, then he is going to draw more labs. Just when we seem to get seizure control, all of this starts. Major bummer. And she just does not seem her cute perky self either. So, we are praying that her med levels are not toxic- we should know by tomorrow or friday, that her pancrease is not damaged, and that those darn seizures stay away! He is also taking about starting her on a appetite stimulant, as she hasn't gained weight in about 6 months and has lost some recently. She has also missed most of her therapy for the last 3 weeks, so I am a little concerned she will fall further behind. We just need our girl healthy so we can blow this joint. My back is not appreciating the sleeping conditions. Well, I will update tomorrow after we see the drs. Also, please keep Great-grandma Ueland in your prayers. She is still in the ICU and had a bit of a scare today. We have been sneaking Kylie down for visits, which seems to boost her spirits. Good night! Maria

Wednesday, December 7, 2005 6:46 AM CST

Good morning. I am in a much better mood today- Grandma Karen spent the night w/ Kylie so I could get a good nights sleep and it really did help. Hopefully this will be a short hospital visit. Kylie was in better spirits after some IV fluids. Her blood glucose was low again, so they added some sugar to her fluid. Some labs came back last night and one of her liver enzymes is off a bit but that is most likely from her not eating for days. Of course, Neil gave her meds to her last night and the little bugger didn't puke on him. I'm starting to think it's just me! We will see how she does with breakfast. As for her med levels, her depakene level was actually low, so she is not toxic on that. We will get the rest back later on today. I will update more later when I hear something. Have a good day! Maria

Tuesday, December 6, 2005 10:45 AM CST

I just got off the phone w/ neuro and Kylie is being admitted to 7940 once again. They feel that her felbatol level is probably to too high and that she is toxic. Unfortunately, we have had great seizure control w/ all of these meds but her poor little body can't handle it. She has not eaten soilds in at least 4-5 days and hasn't kept any fluids down in the last few days, as well as her meds. She had her sleep study last night but was pretty restless through the whole thing. She slept in a crib during it and is not used to sleeping on her own. The poor thing just kept reaching her hand out through the bars towards me. I would rub her hand or leg and she would fall alsleep but as soon as I would stop, she would be up again. She started vomitting during the night and has thrown up 6-7 times this morning. Poor baby. Great-grandma Ueland had a trach put in this morning, to help w/ breathing. What a crappy holiday season. I am slowly breaking down and am praying for strength to get through all of this. Hopefully baby girl #2 will stay in place until her due date. That is the last thing we need right now. I will keep you all updated. Maria

Monday, December 5, 2005 6:30 PM CST

Good evening. We went for a follow-up w/ the ped this morning and she sent us to the ER for IV fluids and IV Zofran. The vomitting got worse last night and this morning, as she started throwing up at times besides just w/ meds. The worst part is she is refusing to even drink her bottle now, no matter what is in it. She isn't at the point of eating solid foods yet, mainly stage 3 baby foods and soup, all of which she is refusing. I couldn't get any of her seizure meds down this morning, so I'm glad we were sent to the ER. It figures- as soon as we get her seizures under control, something else comes up to ruin our happy days. She had a repeat CT scan today, which shows her sinuses have not cleared up after 21 days of antibiotics, so she most likely will be having sinus surgery, as well as her adnoids out. Her blood glucose was low, as well as a few other labs that were off, so hoping the IV fluids helped.We are going back to the hospital at 8pm tonight, to have a pre-arranged sleep study done. She is definately not herself, so I am hooing this does not hinder the test. We just need to get this eating/puking/med thing under control. This was definately not a fun mommy day. After I had given her a third bath of the day by 930am, I was in tears. Yet, she had 3 attempts at IVs today and not a tear from her, so I guess I should toughen up a bit. Hoping we have a better week and that the seizures continue to stay away. Also hoping my memory gets a little better. I left our poor dog outside in the cold MN weather while we were gone today- luckily, she doen't have any frostbite! And the other two dogs lovingly cleaned up all of the puke I missed today (yuck). Thanks for keeping Kylie in your prayers. Maria

Saturday, December 3, 2005 11:46 AM CST

Happy snowy saturday! It is really starting to feel like Christmas! Kylie is still doing very good- we are on pins and needles waiting for a seizure but I actually got to sleep for an entire night last night. We got up early this morning and started cleaning, taking down halloween decorations along the way, (can you believe we missed an entire month being in the hospital?) Kylie loves watching the snow come down. We need to make a trip to the mall later to buy her some shoes, then her and I are going to a small get-together tonight w/ my girls from highschool. Tomorrow, we are getting pictures taken. Kylie had one puking episode this morning. She had her seizure meds an hour previous to this but there it still looked like some came up. After much debate, we decided not to give her additional meds and are crossing our fingers this doesn't start the seizures off again. She has been saying da-da constantly the last two days, sometimes sounding like daddy, and was saying "ba-ba" when we were looking at her baby pictures and trying to get her to say baby. She seems a little bit more wobbily on her feet than she did prior to her hospitalization, but hoping she will catch up soon. Unfortunately, we will be spending the night at the hospital on monday. They fit her in earlier than originally planned for her sleep study, which means she will be having her adnoid/sinus surgery earlier than planned. We see her ped on monday for a check-up and flu shot #2 and then she is supposed to have a follow-up CT scan after. I work a lot this upcoming week, so it will be a busy one. My OB appointment went well- I passed my glucose test this time so I was very happy. My hemeglobin is too low, so I'm sure that is adding to my tiredness. The dr thinks the baby is close to 3 lbs and she is doing well. After this week, the countdown is on! I start seeing the dr every 2 weeks now, so it is really coming fast. Please keep Zoey and her family in your prayers. She is having her hemispherectomy on wednesday and needs many prayers. We are thinking of you Zoey girl and we know you are in good hands. Hope you all have a great weekend and safe driving! Much love-
The Gibbons Family

Thursday, December 1, 2005 9:20 AM CST

How I love my home! I never want to leave the house again, yet I have to go back to the hospital today for a check on baby #2 (I have my glucose test-ughhh). We were so happy to get out of there! And if you can believe this, we left without having any seizures! Her last seizure was around 9pm on tuesday night. Although I believe this temporary seizure control will be short lived, it sure is a nice treat! We got home yesterday around 1pm, had lunch and then Kylie and I crashed. I slept until 530pm and she slept until 615 pm. My mom, sister and Sue came over while Neil and I dashed off to pick up prescriptions, grocheries, and finished some Christmas shopping. We put up our Christmas tree last night and Kylie was mesmorized by the lights, When she wasn't trying to put them in her mouth!) She woke up a few times crying during the night but overall, she did ok. Dr Frost said her current MRI shows only very subtle changes from the one done in feb, which is great news. After my OB appt today, I have to call his clinic and let them know the latest date that I can fly, then we are off to Detroit for Kylie's PET scan. Based on those results, along w/ her EEG, they will decide if we can proceed w/ surgery. We are praying the meds will continue to work and that she won't need surgery, but the likeliness of that is slim. So, we will enjoy our days at home and pray for as many seizure free days as possible. Thank you all for your continued love and support! Much Love, The Gibbons Family

Wednesday, November 30, 2005 8:24 AM CST

**Update: Homeward bound! We are waiting for Neil to pick us up and I will update later from home. =)
Day 14. Hoping today is the day we get the heck out of here. Kylie only had 10, (I know, only), seizures yesterday and did not have a single one overnight. Her weight is back up a bit and she has been in a great mood since yesterday afternoon. Yesterday, she had a great time playing w/ her new friend Danielle, getting a massage and playing w/ the therapy dog, Sasha. No throwing up and only two explosive diapers, (which the nurses love, I'm sure), one of which happened to be on Bridget's lap (sorry about that but thanks for dinner!). Dr. Delahunty gave us the green light to go home, now it's just up to Dr Frost. We never heard about the MRI results yesterday, so hoping he lets us know today. I will update later if we get to leave. Kylie is rumbling, so I think it will be time for a bath. Much Love, The Gibbons Family

Tuesday, November 29, 2005 3:46 PM CST

Day 13. You know you have been in the hospital too long when your flowers are all dying and your helium ballons are deflating. My muscles are starting to ache from lack of use, yet after working last night and actually being mobile, the contractions started up. I see the OB on thursday, so we are hoping for no exciting news. Kylie is having a better day today. So far, under 10 seizures for the day, no throwing up and minimal diarrhea. She was pretty crabby this morning and would only smile for the housekeeper and person who drew her blood, but is in a great mood this afternoon. Our biggest issues is our, (or mine, since Kylie is the center of attention), absolute boredom. Kylie has made a new friend, the little sister of of a patient here. It is nice for her to play with someone her own age, as the chance to do so is rare. Kylie is now off the trileptal and her sodium level is the highest it has been, (a whopping 139). On the downside, she has lost almost 3 pounds and weighs the same as she did at 6 months old. She was started on pedisure today, (although she is probably a "normal" weight for the first time since birth). Dr Frost got her MRI results from Mayo today, so we have been patiently waiting for the results and his feedback. We heard through the grapvine will may be here until thursday, although we are pushing to go tomorrow, 123
(heck, today would be great). Dr Froat leaves for a neuro conference on thursday, so we will be going AWAL if we aren't discharged by then. Kylie is done w/ her antibiotic on saturday and then next week she will have a follow-up CT of her sinuses. Thank you for all of your continued prayers and for signing the guestbook- it really is the highlight of our day reading your caring words. I will update more later if anything changes. Much love,
The Gibbons Family

Monday, November 28, 2005 9:22 AM CST

We are officially being held prisoner and Kylie is the warden with the key. We will not be going home today. =( But, I guess I would rather have all of this figured out before we go anywhere. She has had 8 seizures since midnight but a big part of why we are still here is that she hasn't kept any food down in 2-3 days and it seems like she isn't digesting her food. 8 hours after she eats, the same food is still in her stomach. She has grossed out quite a few nurses here. She has also been having huge loose stools, most likely from her antibiotic. Dr Frost is going to make a few more med adjustments tonight and sees how she does. I asked him what our next option is if these meds don't work, thinking we would try a new one. His response is that we will be taking a trip to Detroit, where she will have the PET scan, which will show us how many tubors she has, their exact location, and the seizure activity from them. He is talking w/ his surgery scheduler today, seeing how quick he can get us in, as I will be reaching a point soon where I will not be able to fly. This all seems surreal and overwhelming, but I keep hoping that if this in any way will help her to have a chance at a normal life, we will do it. Kylie has definately become the darling of 7940. She has smiles for everyone and they all take turns holding her, (even though they put a bath blanket in-between her and them, to avoid the puke/poop). A doctor today said, "I know I keep saying how adorable she is but she is just absolutely beautiful". I will have to agree. Well, keep your fingers crossed she will do better today. I'm afraid our dogs have disowned us and our house is in some serious need of Christmas cheer. I will update more later. Much love, The Gibbons Family

Sunday, November 27, 2005 1:09 PM CST

New pictures! Neil and I snuck home for a few hours last night, so I got a chance to update her album. We are still here and depending on how well she does today, we may get to go home tomorrow. She had fewer seizures during the night (5) and they didn't last real long, but she has had quite a few during the day today. She had one hard one this morning, that lasted about 40 seconds and afterwards, she seemed confused. She is starting to have an oral aversion to food again, just as we were getting her to do so good. This is from the depakote sprinkles that were just started, so we are switching back to the liquid form. Not much new going on. Just hanging out at the hospital and hoping for fewer seizures. We will update w/ any further news. Maria

Saturday, November 26, 2005 9:09 AM CST

Another day full of seizures. Yesterday she topped off at 38, the highest she's ever been at. When we came in, her felbatol level was 51. They want it around 80-100. Kylie got a bunch of extra doses, then was redrawn yesterday. Her level was 37. So, she may be having a problem metabolizing her meds, leading to more seizures. She got a double dose of transene last night at 10pm, then had a seizure at 12am, 230 am and then multiple seizures starting at 530am. She had a total of 8 between 12am-7am, which is better than she has been at but still not great. She has had maybe 5 since then. We are waiting to see the doctors and hoping for a better day with less seizures. Even though we are so used to seeing the seizures, each one tugs at my heart. There just doesn't seem to be an end to all of this. Thank you so much to all of our visitors- it has really helped pass the time. A special thanks to my cousin Lisa's 4th grade class. They made get well cards for Kylie- very cute! They are covering her door and have helped to brighten our spirits. We are going to nap but I will update later. Update** We are still here untile we get things under control. Dr Frost's plan is to "push things hard". She is getting anextra dose of transene when she wakes up, an extra dose of depakene this afternoon and keep the trileptal where is at. She only drank 3 bottles yesterday and not a whole lot of food, so we are not pushing the felbatol anymore, especially since it is not helping. She will have her levels drawn again in the morning and see where she is at. We went to visit Great-grandma Ueland this morning and she looks better. She is off the oxygen and is not getting a trach at this time. She will be going home today with hospice. We watched Santa jump out of an airplane this morning, which was a huge hit with the kids here. That's all for now. Love Maria

Friday, November 25, 2005 10:34 AM CST

We are starting to feel like prisoners of war. We are here on a day by day basis, until Kylie starts to have better seizure control. Frustrating, but we will do whatever we can to help this little kiddo. Yesterday she had around 25 seizures, better than the previous 37, but still not where we want to be. This Thanksgiving was a tie for the worst Thanksgiving ever, right up there the year I had both of our families over and I threw-up for 13 hrs w/ the stomach flu. Neil didn't feel well yesterday, so he went home last night and my mom stayed w/ us last night. Another night w/o sleep. She had a few seizures between 1-4, then a ton between 4-6 am. They then had a hard time drawing her blood, so after many pokes they finally got her. Again, she is in a great mood. Today they are weaning her trileptal, adding depakote sprinkles, (she was on depakene liquid before), and I think weaning her Zonegran. She will also be getting an extra dose of Tranzene tonight. If she does well overnight, Dr Frost said he will consider letting us go tomorrow. Otherwise, we will just see how she does each day. He wants to compare MRIs first and look at previous EEGs. He said we are still in the running for surgery. Even if she is having seizures from both sides of the brain, if they find one tubor that is causing the majority of seizure activity, they will take it out. We talked to Dr Frost about our concern about lasting brain damage w/ so many seizures. He said although we can't predict the future, he is very encouraged with the developmental progress she is making. Even having 20-30+ seizures a day, she started crawling last Friday! We are so proud of her. She has endoured more than anyone I know has in an entire lifetime, yet she does it with a smile. Luckily, Dr Frost is on this weekend, so we feel more comfortable about staying and making med changes. We are just so bored and kind of lonely. There are only 3 other kids here and one is going home today. Big prayers needed for Great-grandma Ueland, who is here in the ER right now and is most likely going to have surgery to put a trach in, as she is having extreme difficult breathing. The cancer has also spread to her kidneys. And of course, please continue to keep Miss Kylie in your prayers, that her seizures get better and that we can go home soon. We are missing the snow falling and want to put up our Christmas decorations. We will keep you posted. Much Love, The Gibbons Family

Thursday, November 24, 2005 5:23 AM CST

Happy Thanksgiving! Another long night, but I thought I would take a minute to reflect on the reasons we have to be thankful this year. For starters, we are thankful that God has given us this amazing, simply awesome child to love. Although we may never know the reasoning behind her disease and we may be frustrated and sad at times, we are thankful that we were the parents that He chose for her. We are thankful for the new life that will be joining us soon, a very unexpected but wonderful suprise. We are VERY thankful that (so far) she looks very healthy and that I haven't (yet) gone into pre-term labor w/ all this stress. =) We are thankful that we happened to fall upon the best doctors in the area to care for Kylie and for the wonderful staff that care for her and support us while we are in the hospital. We are so thankful for our wonderful family and especially for my mom, who love Kylie so very much, who celebrate every achievement she makes and whose hearts ache for every seizure she has. She could not have been born into a better family. We are thankful for moving to an area where we would find an amazing next-door neighbor, who steps right in and takes care of our animals everytime we are in the hospital, (and even when we aren't) and who has become Kylie's honorary grandmother along the way. We are thankful for longtime friends, who have stood by us during this amazing and terrifying journey that we have been on, who could have easily walked away when things got so complicated, yet instead embraced us and shed a few tears with us. We are thankful to both have such understanding employers, who have been so supportive instead of judegmental, when we have to spend so much time away from our jobs. We are thankful for the new friends we have met along the way, who have shared our experiences first hand and have given us support that many don't understand. We are thankful for all of you, who have been here from the beginning, offering words of support and encouragment, keeping our spirits up even when we want to break down and cry. And most of all, we are thankful for each other. I can't imagine going through this with any other person except with my best friend. As you all sit down for thanksgiving dinner today, please continue to keep our little girl in your prayers and know that we are so thankful to have friends like you. Much love to you all- The Gibbons Family

Wednesday, November 23, 2005 5:52 AM CST

Update: Kylie's morning has gone better- still having seizures but not as many as yesterday. She even got her wires off today and is so much happier w/o them. We talked w/ Dr Frost today and they are still trying to get her MRI report from Mayo, (apparently, they are having a hard time giving them up). Tonight she is going to start a new med, transene (or something sounding like it), just at bedtime. Hopefully it will help us both get a better night's sleep. Dr Frost will talk more w/ us tomorrow about her EEG/future plan. He thinks the seizures are still coming from the same area, which is good news. If they are, that pushes us further towards surgery and hopefully for Kylie's miracle. So, unfortunately we will be here for Thanksgiving, but we will be giving thanks for the most precious gift that God could give us. More later.
Yesterday never got better. She topped out at 37 seizures, her record. It is not even 6am yet and she has already been loaded. Her blood sugars were ok, so they are not contributing to her seizures. I feel like I haven't slept in days, as she is pretty much having seizures all night. She was loaded a total of 3 times yesterday. She needs a break and we need answers. I need to thank a few people- Steph and Kate, for the yummy dinner and movie sat, to Nikki S, for the delicious lunch and cookies (and to Hayden for the puppet- she loved it!, to Reen, for the beautiful flowers and chocolate, to Jody and Nicole for the visits, and of course, to my family, for the many hours they spend down here, trying to make things feel a little bit normal. I ended up working last night, but to get a break for a bit. Neil is heading into work this morning. Praying for a better day today. Also, please keep Zoey in your prayers, as her seizures are back w/ a vengenance. More later.........

Tuesday, November 22, 2005 10:57 AM CST

Good morning. Kylie is making her mom and dad sad today. She had a really bad night, having about 12 seizures, mainly around 4-5am. She ended up getting loaded w/valium at 5, then the seizures started back up at 8. She had many more and got loaded again at 9am. We talked w/ Dr Frost and the reality of her seizures being controlled w/ meds is pretty slim. We are now talking about starting her on the ketogenic diet and possibly surgery again. They are going to hook her up to the EEG today, for at least 24 hours, to see if the seizures are still coming from the same place. If they are, we will proceed w/ the surgical approach. I am just NOT ready for that, but we need to do something. They are going to check her blood sugars tonight at 1am and 4am, to see if they are dropping and contributing to the seizures. He wants to see how she does overnight, then maybe tomorrow start her on a benzodiazepen med, which would be given only at night, in hopes of controlling the night seizures. Getting out for thanksgiving is not looking promising. Kylie has spent most of the day entertaining the nursing staff, as they take turns holding her. She is definately a charmer. Please pray for Kylie today- she needs all she can get. Maria

Monday, November 21, 2005 8:48 AM CST

Just back from the kidney ultrasound. We probably won't have results until this afternoon. It went pretty quick and the tech didn't linger over one certain area, so hoping the nwes is good. Kylie had 14 seizures yesterday and ended up getting loaded at 1030pm. The seizures started up again around midnight and she got loaded at 130am. She did ok until 530 and the seizures were back. She far since midnight, she has had 15 seizures. Very frustrating. She is in a great mood though, charming all of the nurses. She is getting a bath right now and we are waiting to talk w/ the doctors. It seems w/ her "rare" condition, everyone wants a piece of her. We just want to go home. More later.........
*** Update- No change w/ her kidneys! They look great, no tubors. Dr Frost came by and changed her loading order, where she will only get loaded if she has 4 seizures in 30 minutes (which we have been at before). He may try and increase her felbatol again, hoping her liver will tolerate. No plan of how long we will be here. Really hoping to be home for thanksgiving. I will update if anything changes.

Sunday, November 20, 2005 10:29 AM CST

Not much new going on right now. Kylie slept from 8-930pm, then was up until 1130 or so. She was completely wired when she was awake, even after all the drugs. She had a minor accident last night- fell straight back and bumped her head on the IV pole and now has a huge lump. She had her IV locked last night and slept well. She had 1-2 seizures during the night and 1-2 this morning. She threw up her breakfast but was in a great mood. She got a bath and has spent the entire morning playing w/ the nurses, while Neil and I read the paper. She has been sleeping for the past hour or so. We are still waiting to talk w/ the drs- so far only the med student has come by. They are talking about doing a kidney work-up, as she seems to be having a hard time retaining sodium. Her last renal scan was in feb and was clear, but hasn't been checked since. Praying there are no tubors there. Just one of the other perks of having TS. It's pretty quite on the unit- not too many kids. Jess B is still here and looks great! She will probably be going home today or tomorrow. Well, I will update more after we see the doctors. Much Love- The Gibbons Family ***Update: Kylie will have a kidney ultrasound in the morning. Her seizures seem to have settled- 3 so far this morning. She had a big lunch and we found she loves tomato soup. Still working on crawling- she does it, in her unique way! More tomorrow...

Saturday, November 19, 2005 1:50 PM CST

Hey gang. Just a quick update. Kylie is back in the hospital, this time we are getting admitted to 7940. Her seizures are out of control. She had over 30 yesterday and had to be loaded 2x. She did ok during the night, then started up at 730am. Between then and 11am, she had about 16. The neuro dr had us bring her to the ER, where they drew her labs, started an IV and loaded her w/ phosphenatoyins(?) Unfortunately, she is seizing through the loading dose, so we are unsure what they are going to do w/ her. Her glucose is again low and they are checking her for a UTI. I am so sad for her, just praying that her entire life is not going to be full of seizures, blood draws, hospital stays and tears. It is so hard to watch. I will update more tonight when I know more. Maria **We are in room 7946. #651-241-7918. Not much more to update. She had a reaction (rash) to the phospheynotion. They later gave her ativan but she is still having seizures. When we got up to the floor, she vomitted all over. Hoping for a better day tomorrow.

Thursday, November 17, 2005 10:25 PM CST

Good evening. I tried updating earlier, but out computer logged me off and I lost the entry. Kylie has decided to have a late night party w/ me. She does not look the least bit tired. Her seizures have been in full swing today, having about 3 an hour, then stopping for an hour or two, then picking up where they left off. Very frustating to watch but she seems to take it all in stride. We saw the ENT doc today and he said that she definately needs her adnoids out, as they are huge and depending on her sleep study, possibly her tonsils, although he said she is pretty young to have them out. He wants to try and get all of her infections cleared up before talking about sinus surgery. She had her ear cultured in the ER and aside from having a staph infection in her blood, she also has a staph infection in her ears. She is scheduled for an in-patient sleep study on 12/14 and depending on those results, he will decide if the tonsil/sinuses need to be done. In any case, she will be having her adnoids out after the 14th. Hoping that will help her seizures but I am not holding my breath. She came off the depakene yesterday and her zonegran was increased to twice a day, so we will see. We had to load her at 530am, as her seizures seemed to come on top of each other. She was pretty sleepy this morning, so we stayed in and snuggled. We went to lunch after her dr appt and she tried wild rice soup for the first time, which she liked, except for the black pieces of rice. After that, we visited Great-grandma Ueland, who looked pretty good. She was even baking cookies, we got to sample. Kylie has her IFEP w/ the school district in the morning, which gives her goals to work on in the upcoming months. Neil is heading out hunting tomorrow and I work all weekend, so Kylie is heading off to spend the weekend w/ Grandma Karen and Auntie Kari. Kylie and I have spent almost every waking moment w/ each other the past 2 weeks, so I'm sure I will be a little sad, (although she could probably care less- she loves her g-ma and auntie!) Kylie now has 5 teeth and 2 more are about to break though. She has been full of drool. I will try and post new pictures when I get a chance. Have a great weekend! Much Love, The Gibbons Family

Wednesday, November 16, 2005 12:13 AM CST

What a long night. Kylie was awake until 230am, pretty much crying inconsolably from 945pm until then. Big thank you to Neil, who stayed up w/ her so I could sleep! Last night, we were told that her blood cultures came back positive, for a staph infection. The antibiotics she is on should clear that up. Her sodium level is back up to 138 (norm is 137-147), which is a huge improvement from her previous 123 level. We got her CT results back this morning and unfortunately, she needs surgery. The doctor is unsure if her sinuses are completely block w/ inflammation/mucus or if she even has any openings at all for her sinuses to drain. Anyways, they need to drill holes in her sinus cavities to allow the drainage to go through. The doctor said her sinuses are completely diseased and full of junk. This has most likely been going on since August, when her sinus infections first started. She said it is possible that there could be a tubor(s) blocking the passageway. Her adnoids are also very large and need to come out. We have an appointment to see her ENT dr tomorrow, (he put her tubes in), and we will know more tomorrow after seeing him. She will be on oral antibiotics, as well as ear drops, until the surgery. They are still unable to see her ear drums because of all of the mucus in there. The surgery will take place in the next few weeks. Praying that this will help decrease the seizures too. She had quite a few this morning but hoping for a better afternoon. We hopefully will be discharged this afternoon. She ate really good for breakfast and will most likely get her IV out soon. She had her last dose of depakene this morning. Dr Frost's nurse, Carol, stopped by this morning and thought they would increase the Zonegran to twice a day. In all, we can't wait to go home. Please continue to keep Kylie in your prayers, that she will heal and that her seizures will go away. Also, please keep Jess B in your prayers, as she will undergo her brain surgery tomorrow. Lots of love, The Gibbons Family

Tuesday, November 15, 2005 9:11 AM CST

415pm: Kylie had her CT and ended up getting sedated because the little bugger kept grinding her teeth. They told me to expect her to be out for the next 6hrs. Dr Frost stopped by and decided we should wean some meds while we are here. She will be off her depakene by tomorrow am. He said he didn't want to keep adding one drug on top of the next, (haven't I been saying that all along?) =) He may see about getting her in a clinical trial with a med from Canada. More tomorrow when i have more results back. I have my cell phone on if anyone needs us- 651-329-0427. Or call Children's, Room 4240.

Just a quick update- Kylie is back in the hospital, this time w/ her labs all out of wack. Unsure if related to her seizure meds or dehydration. Her ear/sinus infections actually have gotten worse, even on antibiotics. They are doing a head CT today to see what her sinuses look like, possibly a tubor in the sinus cavity? I will update more when I get a chance. Maria PS We are in 4240 at Children's if anyone needs to get ahold of us.

Saturday, November 12, 2005 11:14 PM CST

Just a quick update. Kylie has been pretty sick the past few days. She has a double ear infection and sinus infection. Her ears are draining so badly and she is pretty crabby tonight. And of course, our good friend the seizure monster has returned. She had 2 yesterday and so far about 9 today. I am praying they will go away when her infections clear up but am not holding my breath. It seems just when we get her over one thing, wham! The freight train comes roaring in again. I got puked on once again yesterday but today it was Aunt Kari's turn. She handled it like a champ. Oh, and to top my weekend, the vaccuum cleaner started on fire this morning, while I was using it. We can't wait for Neil to get home! Much Love, The Gibbons Family

Wednesday, November 9, 2005 8:21 PM CST

UPDATE:Friday: The MRI results are back and not what we hoped. Kylie has multiple tubors on both sides of the brain, around 4-6 and a few more tiny nodules on her ventricles. We were expecting it but it still sucks to hear. The good thing is, (said the dr), is that she doesn't have any malignant tumors and the nodules in the vetricles shouldn't cause any harm. The next MRI may show more tubors, since it takes a while to calcify. Kylie did great in therapy this morning. Even before Angie got here, she figured out how to go from a laying to sitting position. I got so excited and clapped for her, then she started clapping and laughing. She also woke up this am w/ pus draining out of her ear, so she now has an ear infection and will be starting drops today. The ped wants to see her in the am, since she has been sick for so long. She most likely has a sinus infection as well. One cute thing she did the other day- She loves the different tones on my cell phone and Neil was playing them for her the other day. One tone goes "Blah, blah, blah blah blah", in a sing-song tone. A minute later, we hear this litle voice going "Blah, blah, blah blah blah," in the exact same tone. It was so cute. We went to the Marshall Field's Cinderella display last night and Kylie got to see Santa. She didn't even cry, just tugged at his beard a bit. That's all for now. Have a good weekend, (and keep the prayers coming!)
We are home and what a relief it is. We have had enough of doctors, questions, tests and Kylie's tears. I'm glad we decided to go for a second opinion and although we didn't quite get the answers we wanted, at least we know a little bit more about how to expect Kylie's future. First of all, the Mayo is an amazing place- kind of reminded me of a large airport and that we were by far the youngest travelers. The people that worked with us while we were there were all very nice and truely seemed to have Kylie's best intrests at heart. We really liked both neurologists we met and feel a bit better knowing that there are other people out there to care for Kylie if Dr Frost ever retires. First, the good news. Kylie seizures have continued to stay away and we are keeping our fingers crossed that they continue to do so. She had an EEG yesterday morning, (in which they connect little electrodes to her head- with glue- and monitor her brain waves and look for seizure activity both while awake and asleep, as well as trying to induce seizure activity with a strobe light). For some reason that even the neurologist could not explain, her EEG was completely normal- no seizure activity and not even any abnormal brain waves, which she should have because there is one, if not more, tumor in the path of the brain waves. So technically, even if she is not showing seizure activity at this time, the reading should still be abnormal. I think that we are going to frame the copy of this report and hang it on the wall. For a kid who has never had "normal" associated with her name since day one, this was great news. Yesterday afternoon, we met with the neurologist(s), who spent over 2 hours talking with us. Here is where our not so good news comes into play. Because Kylie has shown so many different types of seizures since feb, it is their feeling that the seizures are coming from multiple ares of her brain and that she probably would not be a good surgical candidate. Also, because she has failed on so many good seizure meds, she will probably never have a life free of seizures. That was so hard for me to hear and I spent the rest of the meeting trying so hard not to cry. I know we need to take one day at a time, but my heart is breaking, knowing that my sweet girl is going to face a lifetime of struggles. We wanted to know if all of these little seizures are causing her brain damage and although it is good that she isn't having any big tonic/clonic ("grand mal") seizures, which tend to do a lot of damage, we can not continue to let her keep having 15-20 seizures a day, because we don't know what type of damage could be happening. He told us to load her with rectal valium sooner than later. He also recommended us trying another emergency med that would be given over the course of 24-48 hours, with the hope of stopping the cyle of seizures. He also brought up the med vigabatrin, which Dr Frost spoke of way back in the beginning. It is a med that is illegal in the US but is used worldwide in TS kids, with seemingly great results in most. The reason it is not FDA approved here is because it can cause peripheral vision loss but that has only been seen in adults. At this point, I think we are willing to give it a go. We see Dr Frost on the 23rd, so we will be asking him about that. The only thing is that he does not prescribe it, so it may be difficult to obtain. The new neurologist also recommened the ketogenic diet, which Kylie would be on for 1-2 years. The diet consists of a high fat diet and does something with the brain's receptors, helping to prevent seizures. Another idea brought up, was a VNS implant, (vagal nerve stimulator), which is a device implanted in the chest wall, that helps stops seizures. If she where to have a long seizure, you would swipe a magnet across the device, in hopes of stopping the seizure. That procedure would be a long way off, however. We will continue to work with the meds and perhaps try the diet. It was sort of a sad day though. I mean, we can send men to the moon, we have watched women in their 60's have babies, and they arecoming up with all new medical procedures everyday. Yet when it bottoms down to it, they can't help my baby. It just seems so unfair that this is happening to her, that this is her life. Some days I feel so guilty producing a child that has to suffer so much. I am praying so hard that the new baby does not have TS. It will kill me if she does. This doctor was a little less hopeful that she wouldn't have it. Even though Neil and I tested negative, really, what were Kylie's chances of getting it in the first place? Please continue to keep both of my babies in your prayers.
This morning, Kylie had an MRI, which she had to be sedated for, (which of course, I teared up watching her- she fought them so hard while they put the mask over her face, then she was just out). The test took longer than expected, while we waited on pins and needles. After, she had a very hard time coming out of the anesthesia. They could get her to wake up and even after we got her roused a bit, she had a few sips of juice and then vomitted all over me, (of course!). They gave her some anti-nausea meds through her IV and tried to waked her again a half hour later. She drank a bit more juice, then threw-up again, (although this time I was ready with a bucket). They gave her more meds and she slept for a while more. We finally got out of there this afternoon and Kylie has continued to be sleepy throughout the day. Hopefully we will have her MRI results back tomorrow. Keeping my fingers crossed that realtively few more tubors have popped up but not holding my breath either. I will update tomorrow if we get the results back. Much love, The Gibbons family

Saturday, November 5, 2005 11:56 PM CST

What a great week we are having. Kylie has been so much fun as she continues to be seizure free. I know the days without are coming to a close, but what a blessing to be given a break. Last night, I ended up working, so Kylie hung out with my mom while Neil and the guys were hunting. This morning, we were up and at 'em, with 3 hours of sleep under my belt- (single parenting is definately not my thing). Kylie got her flu shot this morning, with just a few tears. We headed out to Southdale mall for some early Christmas shopping, where I found the perfect christmas dress for Kylie, (actually, we found 2, one which grandma bought). We had a great lunch at The Cheesecake Factory and Kylie was in a great mood the entire day. Her new thing is that she is in love with the Gerber baby on the baby food jars- she smiles and giggles and babbles to the jar. If you bring the jar close to her, she tries to kiss the baby. The picture is tiny and it is so funny to watch. I received so many compliments today about what a cute baby Kylie is. Whether it is her big blue eys, curly blond hair, big toothy smile or just her awesome personality that draws people in, it just squeezes my heart a bit, that she can be battling these demons inside and be such a great kid at the same time. For only being 1 yrs old, she is such an inspiration to me and I thank God every day for allowing me to be a part of her life. Tomorrow we stop the Pregabalin, so hoping no seizures pop up. We are planning a day of cleaning, then are hoping to bring dinner to GG Ueland. We haven't seen her for a few weeks and would like to get over to see her before we leave for Mayo. As for news on the hunting front, the guys are really enjoying the new cabin, although issues with the water/plumbing have come up. Keeping my fingers crossed they don't come home too stinky. So far, Ben has been the only one to get a deer, although it sounds like he shot a small babmi- =(. We had a girls night at our place tonight, w/ my mom, sister, Andrea and Laura- we ate too much, laughed a lot and watched movies. A great way to end the week. Thank you all for your continued thoughts and prayers and please keep sending them our way! Love to you all- The Gibbons Family

Thursday, November 3, 2005 11:19 AM CST

Good morning. Kylie is having a great week and we are all enjoying a week without seizures. I'm not sure how long it will continue but we will enjoy it while it lasts. She is still getting over her upper respiratory crud, so we are going to sit music class out one more week so we don't get any other kiddos sick. Neil took over for me this week, bring Kylie to her therapies and it has been great! She did so well at therapy yesterday that they are going to re-evaluate her next week to see if she still needs all she is getting. I would love one less day a week. It is so nice to see her without seizures. She has been full of belly laughs and big grins. She has been having a blast playing with her buddy Buster. For an 80 lb dog, who is as uncoordinated as they get, he is so gentle with her and they have such a good time together. Kylie still does not have crawling mastered, but seems to get around her own way just fine. She rolls and scoots to get what she wants. The boys are heading out this weekend for the annual deer hunting trip, (yeah!), so we are planning on a fun girls' weekend. Tomorrow night, Kylie, my mom and I are going to see the Marshall Fields Cinderella display and Kylie will get a visit w/ Santa. Hard to say what she will think of him. Saturday, she will be getting her flu shot and then it's a full day of Christmas shopping w/ my mom, Kari and Laura. Later in the evening, we will meet up w/ Andrea for dinner and game night. I think I might pick up to work on Sunday and then Monday we are off to Mayo. After a frustrating day of phone calls with Dr Frost's office yesterday, we finally have a plan. We are increasing the Zonegran tomorrow and by Sunday, she will be off the pregabalin. Hoping it will help things along. Well, that's all for now. Hope you all have a great weekend! Love The Gibbons Family

Tuesday, November 1, 2005 5:18 AM CST

Good morning. Happy belated Halloween and Happy Nov 1st! Can you believe the holidays are right around the corner? I have been awake since 230am, as working nights over the weekend has completely thrown my schedule for a loop. And of course, I'm not even enjoying my beauty sleep that I should be getting, as Kylie has not had a seizure since 3am Sunday. She had a sleep over w/ Grandma Karen sat and sun nights, while I worked and Neil was on-call. I got the dreaded 3am phone call, w/ the news that Kylie had about 8 seizures in 1 1/2 hrs, so I told my mom to go ahead and load her. Now, no seizures since. They will be back but it would be nice for a loooong break this time. I talked w/ Dr Frost's office yesterday and told them they ARE taking her off one, if not two meds. They argeed, but I have not heard back what the plan is. We are continuing to wean her off her melatonin and she is on about half of what she had been. Last night, she seemed to be waking up a few different times but settled back down. Hoping she does not need the melatonin to keep sleeping. Last night, Neil and I took her out for trick or treats. She looked so cute in her little lamb costume. We went and visited the neighbors, then to my mom's and her neighbors, and finally to a friend's house to end the night. Kylie and her boyfriend Bjorin shared a few kisses, (I will post the picture later), and she learned the art of sharing her toys with the other kids, (didn't go so well). This morning, we head off to the OB to check on baby girl #2, (who seems to be growing at a rapid pace!) and then Neil and I both work this evening. Kylie is going to hang out w/ grandma and Auntie Kari- hope you guys aren't getting sick of her! Thank you both for all you do. We really appreciate it. I have a class all day tomorrow, then I am off for a few weeks and plan to make the most of them. Neil is off hunting for pretty much most of the next 2-3 weeks, so we will have lots of girl bonding. We plan on going christmas shopping w/ my mom this weekend, then having girl night w/ her, Kari and Andrea. We are getting ready for our trip to Mayo next week. We are leaving Monday night and plan on coming back wed afternoon, although we have appointments scheduled through friday. I'm going to cancel the friday appointments, since they are all for genetics and we have already had those done. Please continue to keep my Grandma Ueland in your prayers, as well as my cousin BJ, who is fighting the war in Iraq. He has only been there a few weeks and has already had a few close calls. And of course, please continue to keep all of our friends who having been battling seizures in your prayers, as well as for Angel Drew's family. And of course, many requests for Miss Kylie, that her seizures will stay away and for her baby sister, that she will be healthy! Love to you all, The Gibbons

Saturday, October 29, 2005 10:01 PM CDT

Hi all. Just a quick update before I dash to work. We have now started Kylie on her 5th seizure med, on top of her melatonin, miralax and nebs. I am completely fed up. Even our pharmacisit is concerned about the amount of medications she is on. I said we would only try a new one if we could get her off another one. "Monday" is supposedly when we will try. I am weaning her off the melatonin and hoping to be off the depakote or pregabalin next week. I am sick of being patient and waiting "to see" what will happen. I can tell you what will happen- nothing! She will continue to have seizures and I am ready to take action. I refuse to sit around anymore and wait for her brain to turn to mush. They say the young brain has the best chance to make a recovery, so why are we waiting around? I don't know if it's pregnancy hormones or what but I just feel so emotional right now about things. I am glad we are going to Mayo next week, just hoping they don't give us anymore bad news. We had a crappy night of sleep last night. Kylie seemed to have a seizure every 1/2 hour or so. I feel so guilty leaving her tonight but she is staying w/ my mom. We went to the TS Fall Festival today and it was nice to catch up w/ Mary's parents. Yesterday we went w/ my mom's daycare to visit at the local nursing home. The kids were dressed up in their costumes and looked so cute. Tomorrow we plan on carving our pumpkins. That's all for now. Enjoy the rest of the weekend. Love The Gibbons Family

Tuesday, October 25, 2005 12:10 AM CDT

Today has not gotten off to a very good start. Kylie had multiple seizures during the night and has so far had about 7-8 this morning. She also has some upper respiatory think going on and is pretty crabby. She has spent most of the morning sleeping and wanting to be held. We may be giving her diastat at some point today. We scheduled her sleep study yesterday and it will take place on Dec 14 at St Paul Children's. There doesn't seem to be too much involvement in it. I talked at length yesterday with Dr Frost's nurse, Carol. She wants Kylie to come and stay in-patient for a surgical evaluation, which will include an EEG and MRI, as well as sending us to Dentriot for a special scan. This way, we will know one way or another if surgery is in her future. I told her about our upcoming appointment at Mayo and she agreed it would be a good idea. She said she is curious to see if they agree she has TS, based on her MRI. (WHAT!???) Since we have the confirming diagnosis with her genetic test being positive, there is no doubt she has TS. But she did say her MRI is not typical of a TS patient, as it is not very involved. Then why the heck is she having all these seizures? I told her since these 4 seizures meds seem to be failing, could we at least get her off of one? She agreed and decreased her depakote dose even further and said she will talk w/ Dr Frost about when she could be totally off of it. She also increased her pregabalin. She then said if her seizures aren't better by thursday, or if they are worse, she is going to try and get Kylie a bed on 7940 over the weekend or next week, (I swear I've heard this before). So I guess we wait and see. Last night, we visited baby Carl on 7940. He is back in for some scans and had a new type of tube feeding placed. Considering all he is been through, we looks pretty good, even better than the last time we saw him. Welol, that's all for know. Kylie is having a meltdown as we speak and she just had another seizure and hit her head. Maria

Monday, October 24, 2005 1:29 AM CDT

Good evening- What a weekend we have had. Back-tracking over the last few days- Big thank you to Grandma Karen, who kept Kylie overnight on thursday while I worked a double shift. She took her to the Children's Museum, where Kylie had a great time hanging out with the other kids. Friday night, Kylie and I attended a baby shower. It was so nice to get out of the house and visit! Only problem was that she had too much fun at Grandma's house during the day and only napped for an hour the entire day, so she was not her usual chipper swlf that night. Saturday, Kylie hung out with her dad in the morning, while I went to a scrapbook workshop w/ Jody. I had a great time making a mini journal for the upcoming year. Apparently, Kylie made up for her lack of sleep the day before and slept from 830am-130pm. Neil decided to join her, (why won't she ever do that for me?) Saturday afternoon, we went to Great-grandma Ueland's house for a small get together w/ my dad's family. Later on, Neil, Kylie and I headed off to Stacy, MN, where the girls' from my work held a benefit for Kylie. You guys all continue to amaze me- you are all like a second family to me and I love you all. Thank you so much for what you did for us- to see all of the people that care for us was truely amazing and I want to thank you from the bottom of my heart. A huge thank you to the Hagemen Family, for putting on such a great get-together. We had a lot of fun. We stayed at the party until about 1200am and then headed home. A small scare when my truck wouldn't start and it was pouring rain out, but we arrived home safely. This morning I couldn't believe it when I looked at the alarm clock and it was almost noon. Neil got up with Kylie this morning and let me sleep in. I have been feeling pretty exhausted lately, so it was a welcome treat. We tried taking Kylie to get her Halloween picture taken today, but she had so much fun w/ her dad today and didn't nap all day again, so it was pretty much a wash. Oh well- we came home, made a fire and had some snuggle time. Kylie's seizures have been continuing on a daily basis and we have decided that since the meds don't seem to be working much, I am going to be a pushy mommy this week and try and get her off some of them. SHe is currently on 4 seizure meds and a sleep aid. One med, the depakote, has been on a supposed wean since August but she is still on it. I long for the day to see what she would be like off her meds- would she learn faster? Would she talk more? I know it is wishful thinking and she will always be on something but right now it seems pretty excessive. I also want to talk with her primary nurse this week about us going to get a second opinion, as well as about our frustrations with our regular clinic. Hopefully I can actually get ahold of her. We got our updated appointment information from Mayo and they have us scheduled for appointment from tues-fri. We are going to cancel the genetic portion, so hopefully we will just be there mon night-wed afternoon. She is set up for an EEG and MRI while we are there. I am praying, praying, praying that nothing significant will show up. Please keep Kylie in your prayers over the next few weeks. We have therapy tomorrow afternoon, but otherwise we are going to keep it a low kep day. Hope you all had a great weekend! Love The Gibbons Family

Wednesday, October 19, 2005 11:17 AM CDT

Kylie has a new word..........Mama! Yesterday she was saying it constantly. I would repeat her and then she would repeat me. Funny, I haven't heard her say dada since. =) Her seizures continue on- she has had 4 so far today. We got a letter in the mail yesterday, confirming an appointment at the Mayo Clinic for Nov 8th, which makes me nervous they are getting us in so quickly. We were originally told it would take at least 6 weeks to get in and if she was not critical, we would be on a waiting list. Instead, we are getting in after only 4 weeks. We need to decide if we are going to keep this appointment or go to the U of MN instead. All of this is for a second opinion. My fear is they are going to tell us something worse than what we already know. Anyhow, we had a nice day yesterday. Kylie and I visited Great Grandma and Grandpa Perlt for lunch, before they head back to Hurricane central, (aka FL). Kylie was very well behaved and kept them entertained. She only had 1 seizure by then, but I then made the mistake of taking a very tired baby to Menards and she had 3 seizures while we were there, hittin her head on the shopping cart handle as well. Last night, we went to Auntie Kari's last volleyball game, which they won, and Kari did great! Kylie and I joined my parents for a late dinner, while Neil continued to work on the basement. I work the next three nights, so he will be back on daddy duty. Please keep our friend Jess in your prayers, as she is scheduled to have brain surgery the second week on Nov. And of course, for Miss Kylie, that these darn seizures will go away! Love to you all- The Gibbons Family

Monday, October 17, 2005 11:38 AM CDT

Good morning. Kylie is in a great mood today, so I think we will have a good day. So far, 4 gfb seizures this morning. The ones she is having are so quick, just a few seconds, it's hard to catch them. Yesterday, we went to the pumpkin patch and had a good time. By the end of the day, Kylie was exhausted- she didn't nap all day until 3:30pm and then went down for the night at 7:00. Needless to say, we got a lot of housework done last night. Today we have therapy at Gillettte, including Kylie's favorite- the pool! We are going to have a quick lunch and go for a walk first. She is doing so much better with her eating skills and has in fact become a little piglet. She whines if you don't feed her fast enough. We have been looking through her baby pictures and can't believe how much she has grown. She has gone from a puddgy baby to a beautiful little girl and we are having so much fun with her. She is trying so hard to talk and I caught her saying dada today- don't tell Neil! Not much gong on. Please keep those prayers rolling in and enjoy this beautiful weather! Love The Gibbons

Saturday, October 15, 2005 2:30 PM CDT

What a beautiful October day! Kylie and I are having a girls' day, while Neil is on a bus trip to the casino w/ his hockey people. Kylie has been doing pretty good, She is still having seizures, but not nearly as severe or as often as before. I have noticed today that a lot of the things they are working on in therapy, she is actually starting to do. Today she started scooting forward a bit. She loves to stand now and is not content just sitting on your lap. Yesterday, we had a follow-up ear appt w/ the ear doctor. They re-tested her hearing and said she is now 100For the first time in 6 months, she no longer has fluid in her ears and can hear what we are saying. We discussed her apnea periods and they are setting us up for an overnight sleep study at Children's in about 6 weeks. He said her tonsils look ok but she may need her adnoids out. Her apena spells may be neurologic too, so we will have to see. We also found a doctor who deals w/ genetic neurologic issues, as well as TS, at the U of MN. He is willing to see us right away, so I think we may skip Mayo for our 2nd opinion and see him instead. Kylie went to daycare for awhile yesterday while I got some stuff done around the house. We had friends over last night, as well as their kids and husbands, and had a great time. These girls have been my best friends since grade school and I don't know what I would do w/o them. I love you guys! This morning, Neil let me sleep in, then Kylie and I had lunch w/ Grandma Karen and Auntie Kari, then went to an art exhibit. We are going to get some stuff done around the house today and then go for a walk later. Tomorrow, we are going to the pumpkin patch/ apple orchard. Thank you all for your continued prayers. Enjoy this beautiful weekend! Love The Gibbons

Thursday, October 13, 2005 1:11 AM CDT

Good evening, (or morning). I have a reason I love my husband so much. He called me at work tonight, in a panic, and said, "Have you seen the blister on Kylie's butt? It's the size of a nickel and looks bad." I asked him if he was sure it was a blister, as she got shots today so I was a little concerned. He said it was, so my mom was going to stop by to check it out. I called later to check on him and asked about the blister. He said it was gone. "Well," he said, "I think it might have just been a big indent from the hard piece of poop she was sitting on." Good thing he knows what a blister looks like. =) He can always make me laugh and I believe that is a big part of why our marriage is so strong. Kylie had OT this morning and we working on her feeding issues. She actually did pretty good. We then saw the ped, who said that for what Kylie has been through this past year, she looks great. Kylie got 2 shots today put her ped did not give her the MMR, as she did not feel comfortable doing so. I agreed. She will only get it if we ever get her seizures under control. She is a little concerned about her sleep/breathing issues and said she needs a sleep study, which we will set up w/ her ear doctor when we see him on friday. She is also strongly suggesting that we get a second opinion from another neurologist, which I agree w/. I need to make sure we are going 100% in the right direction in her care. We love Dr Frost but get so frustrated w/ the run around and lack of communication from the clinic. I just need another set of eyes to verify we are on the right track with her care. We are waiting to hear back from the Mayo Clinic about when they will be able to see her. We are also looking into the U of MN, which would definately be more accessable. Kylie had less seizures today and they seemed to be less intense. For a few of them, she was trying to communicate w/ me during them. Time will tell. Great-grandma decided against radiation today and the docs give her 2-7 months. I just pray everyday she does not suffer. We will probably visit her this weekend. We have music class in the morning, so I should get to bed. Please continue to keep Kylie's friends in your prayers. One more thing- in the quarterly TS Alliance "magazine", there is a picture and short article of our family, at Kylie's golf tourney. I will try and scan it in tomorrow. Only 1 and already famous! Much love- The Gibbons Family

Tuesday, October 11, 2005 5:48 PM CDT

The peace was nice while it lasted. Kylie's seizures are back and I'm afraid this new med is going to be a wash. I am not letting them start her on any more meds unless she totally comes off some other ones. I guess way back when the social worker asked me if I knew her seizures were going to be hard to treat, she was right. She is slowly failing all of the seizure meds out there. More concerning. lately we have noticed that she is having periods during her sleep when she stops breathing. It was only for 3-5 seconds at a time, but last night she had a longer spell and freaked us both out. At 430am, I gave up trying to sleep and just stayed up with her. We have her 12mo check-up tomorrow, so we will be discussing this with her ped in the morning. We have had her off the oximeter for a while, but it goes back on tonight. For her seizures, they have all been very quick and she recovers well from them. She had OT and pool therapy yesterday and did very well at both. She had home OT today and Angie actually got a few smiles out of her, (usually she glares at her therapists) =) We brought Great-grandma Ueland lunch today and visited for a bit, then checked out a house Andy and Andrea might buy. Good luck guys! Well, I need to go kill my husband. He special ordered new windows for Kylie's room a few weeks ago and was putting them in. He just informed me he measured wrong- by 10 inches! And to think, he's supposed to be the handy one in the family. Grr. Much love- The Gibbons Family

Sunday, October 9, 2005 7:26 PM CDT

Good evening. What a beautiful day today! While Neil spent the day working on the basement, Kylie and I took the dog and went out for a walk. Kylie road in her pimk car and had a blast. She had a pretty good weekend. Today was the first day I noticed any seizure activity since wed. She had 1-2 tiny, quick seizures in her sleep during nap timr, which woke her up and then she was fine. She was kind of fussy today but did good overall. She even stood for awhile by herself, holding on to a stationary toy. Yesterday, her dad took her to swimming lessons, which will be his first and final trip. He didn't realize that besides the fact of getting into the water w/ her, they had to "sing and dance" to "dumb songs". I wish I could've been there to see it. We visited Great-Grandma Ueland last night. She's hanging in there but very tired. We are going to bring her lunch one day this week. After that, we went to Great-Grandma Perlt's 75th birthday party and caught up w/ the family. Beside's cousin Lori electracuting herself a few days prior, everyone seems to be doing pretty good. We met baby Madison, a beautiful new addition to the family. After holding her for awhile, I became a little freaked out about what I'm going to do w/ 2 babies. I'm sure we will be fine, just may take a while getting used to. Big thanks to Grandma Karen for watching Kylie this weekend while I worked- I really appreciate it! Tomorrow we have OT and pool therapy at Gillette. Hope you all have a great week! Love The Gibbons Family- PS Keep the prayers coming!

Friday, October 7, 2005 12:48 AM CDT

Just a quick update- not much new here. Kylie still seems to be feeling somewhat under the weather- whiny, wants to be held a lot. She seemed a little better yesterday morning, so we went to music class. She was pretty crabby there, so we went home for a long nap. We got her to eat dinner in the evening and ahe seemed to perk up a bit, until she puked all over me again. We took her first bubble/mini jacuzzi bath last night and she loved playing in the bubbles. Today, no puking or temp, just lots of snuggles. She had therapy this morning and the teacher from the school district came out to evaluate her. They are going to be updating her IFEP in the next few weeks. Kylie did not put on her best performance, so it will be interesting to see what they come up w/. I work all weekend but will update if I get a chance. The seizures have stopped for now- prayers that this will continue. Much Love- The Gibbons Family

Wednesday, October 5, 2005 11:36 PM CDT

Good evening. I've decided that Kylie does not like her wednesday therapy appointment, as this is the third wed appt we had to cancel because of her puking. We were both all dressed and set to go, looking quite cute I might add, when I picked her up to go and she looked at me, then proceeded to projectile vomit all over me, her the diaper bag, my purse, her bottle cooler, the leather couch, the floor and the dog, (who so lovingly helped me clean up the mess). She continued to vomit for the next few hours, in between sleeping. Of course, this all happened 25 minutes before our appointment, so all the days appointments once again were cancelled. She slept for the next three hours, then woke up and seemed ok. She has her one year check-up next week, so we are going to be looking at having a big GI work-up. The neuro does not think this is releated to her seizures, but who knows. She had about 5 in her sleep, 1 when she woke up, then a longer one after the vomitting. Since 930am, she has not had a seizure. Go figure. She hung out w/ Grandma Karen and Auntie Kari, while I went to a baby shower and Neil went to hockey practice, (he helps coach the Como 'A' Bantum team). The dreaded winter season is apon us, so we will not be seeing Neil much. Between hunting, hockey and his work, (and boot hockey when it gets really cold). I like to call myself the Winter Widow. But, I am glad he is getting out to do "guy" things. Next year, I may not be as accomadating, so he should enjoy it while he can. =) Starting in Nov, I am going to be teaching a class at St Paul College one night a week. I may be nuts but I think it will be a good experience. I am waiting to hear back from the doctor about Kylie's labs from last friday, in case some are off, causing her to be sick. Personally, I think she may be on too many meds for her little tummy to handle. Tomorrow we have music class and need to run errands. Bundle up! I hear it will be chilly. Tonight we made the first fire of the season. I love it! Hope you all are having a good week. Love The Gibbons Family

Tuesday, October 4, 2005 9:00 PM CDT

Good evening. Kylie had sort of a rough night last night, up quite a bit w/ the seizures. She ended the day with a total of around 20. Very frustrating but become part of our "normal". She spent part of the day at Grandma Karen's daycare, while I had a meeting. Tonight, her and Buster, (the bulldog), have been scared of the storm, with one of them crying every time it thunders. I've even jumped a few times! Great-grandma Ueland came home from the hospital today but ended up getting bad news. Her cancer is very aggressive and there is not much they can do to help her. She seems to be taking it all in stride and I admire her strength. We are going to make the most of her time left with us and although none of us are ready to lose her, she will make a wonderful angel for all of us. She is just sucha beautiful person and we will all miss her so much. But, we will all see her again and until then, I'm going to ask her to keep a special eye on Kylie. Tomorrow Kylie has OT and an ear check-up in the morning, then we are meeting friends for lunch and a visit w/ great-grandma. We then have a baby shower tomorrow night. That's all for now. Thank you for your continued prayers and also for continuing to sign the guestbook. It really helps to lift our spirits. Much love, The Gibbons Family

Monday, October 3, 2005 11:38 PM CDT

Good evening. Kylie had a much better day today. I only woke up for 2 seizures during the night and our girl slept in until 930am! I call that a minor miracle. She must sense how exhausted I was! She had probably around 15 seizures today, much better than our 30 last week. I am going to restart my seizure log tomorrow, so I can keep track if this new med is helping or not. It was a frustrating morning, as I did not get to talk to the person I was counting on from Dr Frost's office. Instead, I talked w/ my least favorite person, so hopefully our plan doesn't get goofed up. The new plan is to double the dose of er new med on friday and wait a week. If Kylie continues to have as many seizures next week, the plan would be to admit her on the 15th and try and get some control. We are keeping our fingers crossed that will not happen. Kylie had OT and pool therapy at Gillette today, which she was somewhat cooperative for. I feel like she has somewhat regressed from last week, although she does well at therapy if she "is in the mood". Today didn't seem to be one of those days. Yesterday, we visited Great-grandma Ueland at the hospital and Kylie had a great time playing w/ her wires. We then went to Kylie's friend Elaina's 1st b-day party, her first friend from 7940. Thankfully, Elaina's seizures are completely until control and she may wean off her meds this winter/spring! I am happy to report that Kylie has been sleeping in her new crib/room today, although we will bring her into bed w/ us for the night. She loves her new room. She is going to daycare tomorrow, for the first time in forever, as I have an all-day class. Not much else is going on. Bailey the golden brought a dead mouse in the house today and freaked me out but if that is as exciting as my day gets, I will take it. Much love, The Gibbons Family

Sunday, October 2, 2005 12:04 AM CDT

Just a quick update- Kylie is continuing to have seizures, although not as many as she had a few days ago. A good chunk of them have been happening in her sleep, so needless to say 2 of us have been exhausted in this house, (Neil not included =). We spent most of yesterday getting things for the new girls' room. We are just about done w/ it and it is looking cute! Kylie loves it. We had to load her yesterday, right before swimming lessons, so we skipped our morning in the pool. We are off to visit Great-grandma Ueland, who had surgery on Fri and was told she does have cancer. They were unable to remove the entire mass but will follow-up w/ radiation. The bad news is that the cancer did not originate from the thyroid. It is somewhere else in her body and she will have a PET scan this week. We have a b-day party later but I will update tomorrow when I find out if we are getting admitted to the hospital or not. Have a good day- The Gibbons' Family

Thursday, September 29, 2005 8:22 PM CDT

Good evening. Just a quick update. Kylie has so far had around 30 seizures today. We loaded her at 1230am and again about 45 minutes ago. I talked w/ Carol today, (Dr Frost's nurse), and we at least have a plan in place. We are starting the Pregabalin tomorrow and she will get one dose, once a day, for 1 week, then twice a day after that. The only real noticable side effect they have seen w/ it is sleepiness. I wouldn't mind a few more naps a day, so I guess that's ok. =) If she makes a major improvement over the weekend, then we will continue w/ the same med regimen. If not, we will be admitted once again to the hospital and she will be hooked up to the video EEG, where they monitor her brain waves and seizure activity. They will then switch her meds around, hoping to find something that will work. Carol is hoping we can make it through the weekend w/o being admitted, as Dr Frost is not in this weekend but will start his month of rounds on monday. But if her seizures continue to increase, we will be admitted sooner. It must be something about the end of one month/ the beginning of the next, as that seems to be when we always get admitted. I am dreading going back but am hoping they can find some way to help her. We can not continue to keep loading her as much as we have had too. Her seizures are getting more intense and we are questioning if she is now having the tonic/clonic, (grand mal) seizures. Although they are short, they sure look like it to me. They have all been clustering too. When she gets a moment break in between a cluster, she always looks over at me and gives me a huge, heart gripping grin, (not part of the seizure), before she starts another cluster. We skipped all of our appointments/therapies yesterday and missed out on music class today. We did get to visit Kylie's great-grandma Ueland today, who is having a big surgery tomorrow to remove her thyroid mass. Please keep her in your prayers. Kylie had a great time over there and actually went 4 hours today w/o a seizure. That's alll for now. Please continue to keep us in your prayers, as well as all of Kylie's friends- Mary, Jessi, Zoey, Jess, Jonathan, and Angel Drew's family. Love to you all- The Gibbons Family

Wednesday, September 28, 2005 0:07 AM CDT

We need lots of prayers right now. Kylie's seizures seem to be getting out of contol3. I just loaded her now w/ her rectal valium. She had 4 clusters of seizures in the 10 minutes since I have been home. Tis is the 5th time she has been loaded in the last week and that doesn't even seem to be helping. I talked w/ Dr Frost's office today and we are increasing 2 of her meds and decreasing 1. If her seizures aren't better in 2 days, we will be starting a new med that has only been FDA approved for 1 month and not on kids. This makes me extremely nervous. I am going to try and stay up with her tonight and see what she does. Everytime I opened my eyes last night, she was having a seizure. This is so frustrating and and am so worried and scared for her future. But through all of these seizures, she has remained happy and her sweet self. We have OT in the morning, followed by a follow-up ear check w/ her ear doctor. Keeping my fingers crossed for a more uneventful week. I do not want to end up in the hospital by the weekend. Praying for peace for my little sweetie- Much love, The Gibbons Family

Monday, September 26, 2005 4:21 PM CDT

***Check out the new pictures!
It's a...............................................girl!
We had our big ultrasound today and found out that Kylie is going to have a little sister. More importantly, we found out that we are having a healthy baby girl. We will have another level 2 ultrasound in 12 weeks, just to moake sure no tubor pop up anymore. But the doctor sounds pretty confident things will go well. Now I feel like I can actually get excited about this pregnancy. Poor Neil- I promised to buy him a toy monster truck for Christmas, since he had his heart set on getting one for a boy. He will just have to learn to paint finger nails and handle having more pink in his house. =) Thank you to all who came to Kylie's birthday party yesterday. It was a great sucess! Lots of chaos, noise and seizures, but we had a good time. A special thank you to Sarah, Jessi anf d Grace, who had a long drive to get here. We need big-time prayers for Kylie right now. Her seizures are starting to get out of control again and the diastat does not seem to be helping. She got it last tuesday, sat and again this morning. Her seizures are getting more freuqent and have been clustering. On th upside, she has scooting around backwards and actually slowly making her way around the living room and bigtime attempting to crawl. It's the little things that count and we are so proud of her accomplishments. She has been in a great mood- lots of smiles and giggles. I woke up this morning to her cute grinning face less than an inch from mine- she had sat herself up and was pinching my nose. I could wake up like that everyday and be happy for the rest of my life. Thank you to Auntie Andrea, who took Kylie to her therapy appointments. We really appreciate it. More prayer erquests for Grandma Ueland, who will be having surgery to remove her thyroid mass this coming friday. That's all for now. Praying for a decrease of seizures this week. Much Love, The Gibbons Family

Saturday, September 24, 2005 1:17 PM CDT

Happy rainy saturday. We have already had a long day. Kylie and I fell asleep around 730pm last night. I got up a few times but she slept until 330am, then was up and ready to go. She had a lot of seizures during the night and we ended up giving her diastat at 400am. I got her back down at 530am and she slept until 8am. As soon as she was up, the seizures started again and have continued throughout the day. It is so frustrating and hard to watch. We went to her first swimming lesson today and she loved it! The teachers kept commenting on what a natural she is. She was the youngest one in the class but one of the few who didn't freak out in the water. We ran errands after swimming and now she is down for a nap. We have a wedding to go to tonight and it is somewhat far away, so I am keeping my fingers crossed for an uneventful night of few to no seizures. I have a feeling she will need diastat again today. Both of her bottom teeth are about to break through, so I am praying the increase of seizures is related to that. That's all for now. We will see many of you tomorrow at the b-day party. Hoping Kylie is having a better day then. Much love, The Gibbons Family

Thursday, September 22, 2005 0:14 AM CDT

Good evening. Our birthday / anniversery day of fun didn't turn out quite as planned. Kylie had many seizures during the night and woke up tired and crabby. After a long morning nap, the three of us and Bailey, (the golden retriever), headed out to Minnehaha Falls. We got our picnic lunch all set up and started eating.....until the attack of the killer bees. They were swarming us and I was so worried Kylie was going to get stung. And of course, Bailey kept trying to eat them. So, we decided to take a hike instead. Kylie loved looking at the water fall but Bailey was being so naughty, trying to catch squirls, that we cut our trip short. She was pretty crabby anyways. Auntie Andrea babysat while Neil and I ran errands. Kylie continued to have many seizures throughout the day, so we finally decided to give her diastat to give her a break. So much for her birthday fun. She conked out for most of the evening. She got up at about 830pm, in time to open presents from us and my parents. My parents got her a baby doll- her first, and she loved it. She held the doll on her lap and kept scrunching her eyes up at the doll. Then she started talking to it and gave it kisses. It was so cute! She stuck her hand in the cake but wouldn't eat any of it- she did not like her hands dirty! We talked to her ped and her neurologist that day as well. Kylie has had the same sinus symptoms as a few weeks ago, so the ped started her on a new antibiotic, which she will be one for 2 weeks, with a week break in between. Hopefully this will help. Her neuro increased her felbatol and if she does ok w/ it over the weekend, we will continue to wean the depakote on monday. She has OT at Gillette today and she actually attempted to crawl! The therapist believes she will be crawling and talking soon. We can only hope! We have our first music class tomorrow. It will be nice to meet some other kids in the neighborhood. We have a lot going on this weekend, including Kylie's 1st birthday party! We can't wait to see so many of you! If anyone would like to attend, please email me for directions. We are hoping for good weather. Fingers crossed! Well, I'm going to turn in. Thank you all for your continued prayers! Much Love, The Gibbons Family

Tuesday, September 20, 2005 0:26 AM CDT

Happy Birthday Baby Girl! One year ago today we welcomed you into our lives and you stole our hearts. This has been the best year and the worst year of my life. The best, because I never realized that I could love someone as much as I love you. My life forever changed the moment we laid eyes on each other and saw right down to each other's soul. You are the most gentle, sweet, loving child that I could ever ask for. My wish for you this year is that you will know a life with out seizures, that you will be able learn what it is like to have a "normal" life. It breaks my heart that you know no other way. But I promise you, I will spend every day trying to make that wish come true. Since the day you were born, you have touched the lives of so many people. Everybody loves you- you have the sweetest smile that could melt the coldest heart. Daddy and I have a special day planned for you. We are going to go on a picnic and see the waterfalls, because you love the water. We are going to have dinner with grandma and grandpa and even try to get you to eat some cake. We even have some special suprises for you! I want to thank you for being so brave and strong this past year. You have gone through things that I would not have been able to handle as an adult. We have a long road ahead of us this year but we promise to keep helping you work hard to reach your goals- walking and talking by your next birthday! It will be hard work but know that we will be by your side the entire time. I love you so much peanut and thank God every day for letting us have you in our lives. Love Momma
PS Happy Anniversery to you daddy. I love him very much!

Sunday, September 18, 2005 9:34 PM CDT

Good evening. Just a quick update before I head into work. Not a lot going on right now. Kylie slept overnight at Grandma Karen's last night and tonight, since I have been working and Neil was golfing all weekend. She has been ahving a great time. Both of her front teeth are now in and the ones on the bottom are trying to push through. She looks so old. We can't believe she is going to be one on tuesday! Neil and I both have the next two days off, so we are going to try and do something special with her. She has been doing good in all of her therapies but has been coping an attitude toward her therapists. They make her work and she glares at them and spits on occasion. Not a real spit, just a quick raspberry to show them she is not happy. She has OT and pool therapy at Gillette tomorrow, which she loves. I attended a TS meeting on saturday and we talked about all of the upcoming events over the next year. We are going to help put the walk together in May, as well as have the annual Kylie's Hope golf tourney. We are also going to try and get some local celebrity sports figures together to help put a commercial together on KFAN radio. We are going to try and raise as much awareness as possible over the next year, so some day, Kylie will be able to have children and not have to worry about them having TS because there will be a cure. In MN alsone, there are approx 850 children w/ TS. Not many, but each case is one too many. We have a busy next few weeks to end the month of September. Kylie has 4 therapy appointment this week, starts music class on thursday, (I had the weeks mixed up), turns 1 and has her 1st birthday party on sunday. We celebrate our 2nd wedding anniversery on tuesday and will all attend a wedding on sat. Next week is also full of therapy appointments but we add 3 doctor appoinments to the mix. Next monday we have our big ultrasound to check on baby #2 and see how the development is going. We also decided to find out if Kylie will be having a little sister or little brother. We are praying with all our hearts that the baby will be healthy. Please help us do this! Also please continue to keep all of Kylie's friends in your prayers, as they continue to battle seizures: Mary, Jessi, Zoey, Jonathan and of course, for Drew's family. Much love to you all, The Gibbons Family

Thursday, September 15, 2005 12:35 AM CDT

Good news! Our genetics are negative! What a huge relief. I am so happy, yet at the same time a little sad for Kylie, that she has to battle this crappy disease alone. Not that she is really alon, as she has all of these wonderful people supporting her. =) There is still a tiny chance the new baby would have TS, about 1-2%. In those cases, the parents test negative but have something called gonadal mosaicism. The TS is only present in the egg and sperm and is unable to be detected by a blood test. We are not going to worry about it at this time- just happy w/ our news. We have a level 2 ultrasound on the 26th and if they spot anything abnormal, then the baby would have a full work-up when it is born. Otherwise, it will just have a blood test when it is born. Keeping our fingers crossed for a healthy baby!
While I am overjoyed at our news, I am devestated for a family we met on 7940. I have written about this family before. They were the first ones to welcome us to the unit and the mom worked very hard to make me feel at ease. Their little boy, Drew, died last month, 5 days shy of his second birthday. He was having uncontrolable seizures and was diagnosed four days earlier w/ Alpers disease. The family also has a 5 mo old baby girl, McKenna. Yesterday, the family learned their baby has the same disease that took their precious boy and will suffer a similar fate as Drew. I can not even fathom what they are going through right now. If God has any miracles left in His pocket, I am praying w/ all my heart that this family is the one to receive them. If you would like to learn about Drew, please visit their website at www.caringbridge.org/mn/drewolson
Please keep their family in your prayers.
Kylie took a crash landing this morning- right out of bed. I woke up and couldn't find her.....until I looked on the floor. There she was, "reading" magazines. She didn't even cry! I guess we will have to come up w/ a better sleeping arrangement. So far, no seizures yet today. Grandma Karen ended up giving her diastat last night, as her seizures were starting to come more frequently. Hopefully it will knock the cycle out.
Great-grandma Ueland got good news today too. She does not have the type of cancer they thought. She does have a cancer called Hurthle cell carcinoma, a rare thyroid cancer. She will be having surgery in the next few weeks at the U to remove the mass and then possibly radiation. We are praying she will be making her chocolate chip cookies for many years to come! Hope you all have a great day! Much Love, The Gibbons Family

Wednesday, September 14, 2005 0:30 AM CDT

**Update: We still do not have our results back. No one called today, I I will be calling in the morning. Please pray for Drew's family, (Drew passed away last month at the age of 23 mo). The family just found out that their 5 mo old baby girl has the same disease that took Drew and the outlook is grim. I am devestated for their family. If God did not spare them of another child suffering, I am not holding high hopes for ours.
Good evening. I am sitting on pins and needles, waiting for morning to come. This will be the day that we will find out if our lives are forever changed. We are getting our genetic testing on Neil and I, to see if either one of us have TS. If one of us does, the new baby will have a 50hance of having TS as well. also, if one of us has it, we will have to go through all the same testing that Kylie has had- MRI, EEG, kidney ultrasound, eye and skin exam, chest x-ray, etc. Boy, will our insurance company ever love us. I am praying with all my heart that we get good news. I want the new baby to have at least a chance for a normal life. And darn it, it would be nice for some good news for once. The genetic clinic's # was on caller id tonight when I got home, so I am assuming the results must be in. Kylie and I bummed around today, (our only free day all week!) I dropped her off at Grandma Karen's on my way to work and she went to watch her auntie play volleyball. Tomorrow, we have OT at Gillette. I pray we get the results before I go to work or I am going to be a mess! Kylie continued to have seizures through out the day. I think she had quite a few in her sleep last night. I swear I slept w/ one eye open, because everytime I opened my eyes, she was having a seizure. I really hate that feeling- it was so nice to have two weeks of good sleep. Not much else is going on. Pray, pray , pray for good news tomorrow. I will update after we hear the results. Much love, The Gibbons Family

Monday, September 12, 2005 10:49 PM CDT

Good evening. Today had it's ups and downs. Kylie spent the night w/ my mom last night, as I worked a double. I picked her up at 8am and unfortunately, she had 6 seizures by then. She continued off and on throughout the day, totaling 12. Very frustrating and very discouraging. She has been doing so well and it is hard to see her going backwards. But, that it the problem w/ this this crappy disease. You never know what the next day will bring and you do not have a guranteed happy place. I hate each and every seizure and what they do to my poor baby. But after each seizure today, she gave me a smile that would break your heart. On the upside, Kylie coroperated very nicely at therapy today and started her pool therapy, which she loved! She was a regular little fish in the water! It was so nice to see her doing something that gave her pure enjoyment. She will continue the pool therapy for the next 10 weeks. Kylie also seemed a little more mobile tonight. She was actually scooting herself backwards and in therapy today, she actually rocked on her hands and knees. Baby steps, I know, but I keep my fingers crossed every day she will start crawling soon and eventually walk. It is so hard seeing kids her age doing "normal" things. I just want that for her. She is also doing much better at eating. I am able to get at least 2 meals a day in her. We are stopping formula next week, so it is very important she continues to do this. Grandma Ueland got discharged from the hospital today, which I sure she is very greatful for. The food there really was not cutting it for her. She will be getting her biopsy results back on thursday and will then find out what the next plan of action is. This is a busy week for us. We have therapy on wed and fri and Kylie starts her music class on thurs. We are supposed to be getting our genetic results back on wed and we are praying so hard for negative results. I can not watch another baby suffer. Kylie will be one next week already- where does the time go? I'm signing off as the storm grows nearer. Hope you all have a good night. Love The Gibbons Family

Sunday, September 11, 2005 11:27 AM CDT

Good morning. Not much new is going on. Kylie did not have any seizures that we saw yesterday and so far none today. Yesterday we just hung out around the house, getting Kylie's new room ready to be painted. We are moving her room into the downstairs bedroom and will share it w/ the baby if the baby is a girl. Otherwise, the new baby will have a room upstairs if it is a boy, (we find out in 2 weeks!). Kylie starts her pool therapy tomorrow. We are hoping it helps to strengthen her muscles. She also has OT tomorrow. We are supposed to get our genetic results back on wed, so please, please, please pray for good news. We are also praying today for the families and the angels from 9/11. Hard to believe it has already been 4 years. Hope you all have a good day. Love The Gibbons Family

Friday, September 9, 2005 8:23 PM CDT

We are finally home and are all totally exhausted. I have been up since 4:30am and hope for a good night sleep. Kylie's surgery went well. She happened to have an infection in both ears, even though she has been on an antibiotic since last week for her sinus infection. She had her first seizure in 2 weeks while we were waiting for them to take her into the OR. Six more seizures followed throughout the day. I don't know if it was due to her med schedule being changed, lack of sleep, the drama of surgery, or all combo of all three. They were not her typical seizures either. They were focal seizures, kind of a stare. I'm also hoping that this doesn't mean that they are from a different area of the brain. But overall, things went well. She was screaming bloody murder after the surgery, then conked out. Her blood pressure was elevated afterwards, but once stable, we got to leave.

Round two of our day then began. We went and sat w/ Grandma Ueland for awhile, then went out to lunch w/ my dad's siblings. Kylie started vomitting then, but only did so a few times today. We sat and waited for a few hours while grandma had surgery, then the surgeon came to talk to all of us. She does not have the type of cancer they originally thought but does have a rare form of thyroid cancer, (leave it to this family to come up w/ the "rare" diseases). The mass extends from just below her the area of the adam's apple, down into her chest cavity, sitting above her aortic arch. The final biopsy results will take 4-5 days and only then will the doctors discuss w/ everyone the next course of action, if any. On a good note, she did not have to get a trach and can still talk w/ all of us. We are keeping our fingers crossed and praying that she does not have to suffer in any way. She is such an amazing person- just makes me wonder why bad things seem to always happen to the best people. But I guess that is something I will never find out.

Neil works all day tomorrow, so Kylie and I plan on getting things done around the house. I'm turning in but thank you all for your continued prayers. Much love, The Gibbons Family

Thursday, September 8, 2005 9:51 PM CDT

Good evening. Tomorrow will be a long day. We have to be at the hospital by 6am and Kylie's ear surgery is scheduled for 7:15 am. Hoping this is our cure of ear infections. Please keep her in yor prayers tomorrow.

Grandma Ueland had a biopsy this sfternoon and the results don't look good. They suspect that she has a fast growing, aggressive type of cancer. At 2:30 tomorrow, they will be performing a tracheostomy, to help her breath better, and an open biopsy. They may or may not remove her thyroid gland. If all goes well w/ Kylie, we plan on hanging out at the hospital during Grandma's surgery. We all love her so much and pray she will be comfortable.

I talked w/ Dr Frost's nurse today and if Kylie does well through the weekend, they will continue to wean her depakote on Monday. We are scheduled to see Dr Frost at the end of Nov, as long as Kylie does ok until then.

Today Kylie and I visited Grandma Karen and the daycare kids. We then went to visit Great-auntie Patti, who fitted Kylie for her ear plugs for baths and swimming. After that, we visited Grandma Ueland at the hospital. We later picked up Neil and went to Auntie Kari's volleyball game. She did great and they won! Go Bulldogs! We went out to dinner w/ my parents and Andrea, then a much needed trip to Target. Kylie peed all over Neil while we were there. =) That's all for now- Much Love, The Gibbons Family
PS Kylie said "Hi" today, although it sounds like "Haa" but said it at the approprriate time!

Thursday, September 8, 2005 1:36 AM CDT

Good evening. I just got home fromw work and from sitting in the ER. This time, I was sitting w/ Grandma Ueland, Kylie's great-grandma. Tonight she was having difficulty breathing and after doing a CT, they found a mass on her thyroid. She is an awesome lady and I am requesting many prayers that she will be ok. My other grandma, Grandma Perlt, is recovering nicely at Mayo after having shoulder surgery. Hopefully she will be home friday.

Kylie had OT this morning, which she did well at. I thought I may have seen a tiny focal seizure during therapy, but I am hopig that I was mistaken. Neil didn't see any tonight. She then had her pre-op physical and passed w/ flying colors. She is up to 23lb.

The genetics clinic called and said our test results will be back wednesday. Now we sit in agony, keeping our fingers crossed the results will be negative. I will have a breakdown if they are positive. We have an ultrasound in less than three weeks to find out the sex of the baby and more importantly, if it is healthy. So many prayer requests for one family, but please, I feel they help and if you have extra time, please send a few our way. Please continue to keep all the special kiddos in our life in your prayers as well and extra prayers for Drew's family, as they deal w/ his death. I will update more tomorrow- Much love, the Gibbons Family

Wednesday, September 7, 2005 0:12 AM CDT

Good evening (or morning). I just got home from work and have time for a quick update. Kylie is continuing to do well- no seizures that we have seen. She got fitted for her helmet today and Angie came to do therapy w/ her. Kylie seemed a little floppy today- she tipped over and hit her head 4 times. She was not a happy camper. We also got her most recent eval from Gillette back today- not real good. Kylie's gross motor skills are definately lacking. Her tone is still very low but we are working hard to help strengthen her. She starts pool therapy on Monday. I am feeling very guilty about working right now. I feel like this is the time that is going to make the most difference w/ her. She needs more one-on-one therapy than just what she gets w/ her therapists and I feel like I am not giving her the time she needs. I have been thinking about cutting back my hours a bit so I can spend more time working w/ her, before I get too big to do so. She goes to the feeding clinic tomorrow and I am happy to report I got her to eat two full meals yesterday and drink from a sippy cup for a bit. We also see her ped tomorrow for a pre-op physical and we then have to go to the hospital for a chest x-ray and an EKG. Hoping we can get this all done before I go to work. Friday is her surgery to get tubes put in her ears. We have to be there at 6am, so it will be a long day. I am praying the stress of surgery does not prompt her seizures to come back. That's all for now. Hope you all have a great night. Love The Gibbons Family

Sunday, September 4, 2005 10:05 AM CDT

Good morning. Sorry it's been so long since I updated but we were working on getting well at our house. I stayed homw on thursday w/ Kylie and we pretty much lounged all day. She was a little pukey in the morning but mostly slept the whole day. Friday, Angie came to do therapy w/ Kylie, which she did ok w/. She still wasn't feeling the greatest and was a little crabby. She hung out w/ her dad in the evening while I worked. Yesterday, we took a girls' trip to MOA to have Kylie's 1 yr pictures taken, (can you believe she will be a year in 3 weeks!) Our appoinment was at 1130 am and we didn't get home until 7 pm, so needless to say it was a long day. The photographer didn't get any pictures of her looking at the camera during the first sitting, so we went back at 3pm and had much better results. I will post some pictures later. Kylie went to hang out at Grandma Karen's when we got home, as I have been feeling pretty crummy lately. Kylie stayed up late but slept in today. We are going to go the the St Fair in a bit, taking w/ us Neil's little brother Payton. We are continuing to enjoy seizure free days. We see Kylie's doctor this week for a check-up and will need to address her throwing up issues, as she did it again twice yesterday. I'm hoping it was just everything draining down her throat from her sinus infection, but we need to be sure. She will be having surgery on her ears on Friday, where they will place tubes. We are hoping this will cut down on the # of ear infections she has been getting and will help her to start talking soon. Please keep my Grandma Perlt in your prayers this week, as she will be having shoulder surgery. Also, for Neil's Aunt Jessi, who began chemo on friday. And of course, for Miss Kylie and her special friends- Zoey, Mary and Jessi, the last two whose seziures have come back. We received a letter from the TS Alliance, thanking us for raising $13,4000 at the first annual Kylie's Hope Golf Tourney. Again, thank you all who participated! I hope you all have a great weekend and safe driving. To those of you going back to school this week- good luck! hugs and Kisses from Kylie- The Gibbons Family PS Kylie's first birthday party will be sunday sept 25th, if anyone would like to come meet our special girl. More details later.

Thursday, September 1, 2005 0:43 AM CDT

Today was a completely exhausting day. Kylie started the day by vomitting up all of her morning meds and bottle, (on me of course). We both took a quick bath, got dressed and ready for her appointments. I re-gave her the am meds again and as we were about to walk out the door, the puking started again- all over both of us, the couch, the carpet- you get the picture. We I called and canceled her feeding clinic appt and her helmet fitting and we took another bath. She slept from 9am-1245 pm, when I woke her up to try giving her meds again. She was ok until about 130, when the puking started all over again, (on both of us). This time, her mommy's preggy belly couldn't handle it and I joined the party. Bath time again. Kylie then fell asleep again. I called Dr Frost's office because I was concerned she wasn't getting her seizure meds. They had me try and wake her up again but every time she would open her eyes, she threw up. At about 400, they decided it wasn't a neuro problem and had me call her ped, (who saw her last week and said it was a virus). Anyways, since she didn't keep any fluids down all day and did not have a wet diaper all day, they had us go to the ER. After the 7th attempt, the ER staff finally got an IV in her. Poor baby did not have a good experience. She got poked in all four extremities. Since Kylie's labs looked good, the ER doc decided to do a CT of her head to see if anything new was going on. We did warn the CT staff not to freak out when they saw a tumor on her brain, because yes, we know it's there. =) She slept threw the entire thing. The doc later came in and said that she has "a nasty sinus infection". She has probably had it for close to a month, when this all started. And to think I was worried she was becoming autistic because she kept hitting herself in the head- she just had a really bad headache these last few weeks and didn't know how to tell us! I felt so bad. They gave her an IV antibiotic and sent us home. As we were waiting for her prescription in the pharmacy, she started puking again, this time all over dad, (who could never be a medical professional by the way=). I called the neuro then, because she wasn't able to keep the depakote down all day. He said that if he would've known she was in the hospital, he would've had them give it IV. grr And that if she couldn't keep it down, we would be going back to the hospital for another IV. I am proud to say after 3 hours, I got each drop down her. She is still lethagic and has not kept any fluids down all day. If this continues tomorrow, we will probably be back at the ER. Can you believe through all of this, no seizures? If she can't keep her meds down though, I'm sure they will start up soon. I'm going to stay home w/ her tomorrow and work on preventing those seizures. Sorry so long and winded! Hope you all had a great day! Love The Gibbons Family

Tuesday, August 30, 2005 2:31 PM CDT

Hi all. Just a quick update- Auntie Kari has Kylie at her house, so I need to get some stuff done. Kylie still still seizure free since thurs night, hoping she stays this way. We are waiting to hear back from Dr Frost's office on her depakote wean. She ened up coughing so hard this morning, so vomitted up all of her bottle and meds, on me, her, the newly laundered bedding and the cat. It was baths for all. I saw my OB today and baby # 2 sounds good- strong heartbeat and moving like crazy. We are getting set up for a level 2 ultrasound in 3 weeks. Neil and I stopped in at the genetics office today and still no results back. I spoke w/ Zoey's mom today and she is still doing great. My mom just called and the kids at daycare taught Kylie how to do "So Big". Now if only they could teach her to crawl........ Tomorrow Kylie has OT and is getting fitted for her helmet. That's all for now. I found this poem on another TS kiddo's website last night and wanted to share it with you all- it is almost like the author read my mind. I am dedicating it to all you "special" mommies out there:

To You, My Sisters
by Maureen K. Higgins -

Many of you I have never even met face to face, but
I've searched you out every day. I've looked for you
on the Internet, on playgrounds and in grocery stores.

I've become an expert at identifying you. You are well
worn. You are stronger than you ever wanted to be.
Your words ring experience, experience you culled with
your very heart and soul. You are compassionate beyond
the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority.
A very elite sorority. We are special. Just like any
other sorority, we were chosen to be members. Some of
us were invited to join immediately, some not for
months or even years. Some of us even tried to refuse
membership, but to no avail.

We were initiated in neurologist's offices and NICU
units, in obstetrician's offices, in emergency rooms,
and during ultrasounds. We were initiated with somber
telephone calls, consultations, evaluations, blood
tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things
were fine. We were pregnant, or we had just given
birth, or we were nursing our newborn, or we were
playing with our toddler. Yes, one minute everything
was fine. Then, whether it happened in an instant, as
it often does, or over the course of a few weeks or
months, our entire lives changed. Something wasn't
quite right. Then we found ourselves mothers of
children with special needs.

We are united, we sisters, regardless of the diversity
of our children's special needs. Some of our children
undergo chemotherapy. Some need respirators and
ventilators. Some are unable to talk, some are unable
to walk. Some eat through feeding tubes. Some live in
a different world. We do not discriminate against
those mothers whose children's needs are not as
"special" as our child's. We have mutual respect and
empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with
whatever materials we could find. We know "the"
specialists in the field. We know "the" neurologists,
"the" hospitals, "the" wonder drugs, "the" treatments.
We know "the" tests that need to be done, we know
"the" degenerative and progressive diseases and we
hold our breath while our children are tested for
them. Without formal education, we could become board
certified in neurology, endocrinology, and pschylogy.

We have taken on our insurance companies and school
boards to get what our children need to survive, and
to flourish. We have prevailed upon the State to
include augmentative communication devices in special
education classes and mainstream schools for our
children with cerebral palsy. We have labored to prove
to insurance companies the medical necessity of gait
trainers and other adaptive equipment for our children
with spinal cord defects. We have sued municipalities
to have our children properly classified so they could
receive education and evaluation commensurate with
their diagnosis. We have learned to deal with the rest
of the world, even if that means walking away from it.

We have tolerated scorn in supermarkets during
"tantrums" and gritted our teeth while discipline was
advocated by the person behind us on line. We have
tolerated inane suggestions and home remedies from
well-meaning strangers. We have tolerated mothers of
children without special needs complaining about
chicken pox and ear infections. We have learned that
many of our closest friends can't understand what it's
like to be in our sorority, and don't even want to
try.

We have our own personal copies of Emily Perl
Kingsley's "A Trip To Holland" and Erma Bombeck's "The
Special Mother". We keep them by our bedside and read
and reread them during our toughest hours. We have
coped with holidays. We have found ways to get our
physically handicapped children to the neighbors'
front doors on Halloween, and we have found ways to
help our deaf children form the words, "trick or
treat." We have accepted that our children with
sensory dysfunction will never wear velvet or lace on
Christmas. We have painted a canvas of lights and a
blazing Yule log with our words for our blind
children. We have pureed turkey on Thanksgiving. We
have bought white chocolate bunnies for Easter. And
all the while, we have tried to create a festive
atmosphere for the rest of our family. We've gotten up
every morning since our journey began wondering how
we'd make it through another day, and gone to bed
every evening not sure how we did it.

We've mourned the fact that we never got to relax and
sip red wine in Italy. We've mourned the fact that our
trip to Holland has required much more baggage than we
ever imagined when we first visited the travel agent.
And we've mourned because we left for the airport
without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never
stop believing. Our love for our special children and
our belief in all that they will achieve in life knows
no bounds. We dream of them scoring touchdowns and
extra points and home runs.

We visualize them running sprints and marathons. We
dream of them planting vegetable seeds, riding horses
and chopping down trees. We hear their angelic voices
singing Christmas carols. We see their palettes
smeared with watercolors, and their fingers flying
over ivory keys in a concert hall. We are amazed at
the grace of their pirouettes. We never, never stop
believing in all they will accomplish as they pass
through this world.

But in the meantime, my sisters, the most important
thing we do, is hold tight to their little hands as
together, we special mothers and our special children,
reach for the stars.

Love The Gibbons Family

Monday, August 29, 2005 11:08 AM CDT

Good morning. Kylie had a great weekend. No seizures since early friday am and this is without receiving diastat! Now everytime I have said no seizures, I have jinxed us, but we are hoping these will last for awhile. She has even been sick over the weekend, w/ a nasty cold / cough. She has been drooling horribly, so i am thinking some more teeth will be coming in soon. Kylie spent Sat night w/ Grandma Karen while I worked and I unexpectedly got last night off, so we hung out all night. Kylie, Neil and I walked to the local pizza joint, ate and then watched a movie. Pretty low key. We had therapy at Gillette today but didn't make the entire appt. Kylie had a major meltdown, so we left half way through PT and didn't even make OT. She has never really screamed like that before and she really did not seem to feel well. Of course, once we were on our way home, she was being her usual charming self. Her appt ran into nap time, so I think that was part of the problem. PT did recommend pool therapy for her, so we will be starting 6 weeks of pool time at Gillette. And the best part is, I don't even have to get in the water! We are going to m=nap for awhile. Continued prayers for uneventful days! Much Love, The Gibbons Family

Saturday, August 27, 2005 0:20 AM CDT

HOUSTON............We have a tooth! Whoo-hoo. Finally something normal to report! Kylie's first tooth finally popped through, her top right one and the top left is working it's way through. It has been a long 4-5 months of teething. Kylie keeps rubbing her tongue over it, not quite sure what it is. She slept well last night, only two seizures that I woke up for and no seizures all day! Go figure, she is sick and barking like a seal. But hey, we'll take it. She didn't have therapy this morning because she was still feeling crummy and checked out ok at the ped. Still a lot of fluid in her ears but hopefully that will be taken care of in 2 weeks when she gets tubes. The ped sent us to Children's to get labs drawn, just to make sure everything was up to par. We didn't hear back, so if she does ok over the weekend, we will just check in Monday w/ them. Kylie did not like having her blood drawn today. The last two times, they had a hard time getting the blood to come out. And Kylie's 2 favorite old gals who usually draw her blood were not there, so I think that had something to do w/ it. Kylie hung out with her daddy tonight while I worked. Tomorrow, we are going to Neil's Aunt Jessi's benefit. She is going through breast cancer and had a mastectomy a few weeks ago. Please keep her in your prayers as well. I work 12 hour night shifts this weekend, so Kylie will be spending the nights at Grandma Karen's, (as Neil could sleep through a tornado. Monday, we will be at Gillette all morning. She has an hour PT appt and a 30 min OT appoinment. I'm hoping they can help this gal get into action! I'm hoping we can get her to the fair next week too. Wed she has OT and is getting fitted for her helmet, (which she hates). I'm going to turn in but please, keep those prayers coming! Love The Gibbons Family

Thursday, August 25, 2005 9:56 PM CDT

Good evening. Our day didn't turn out quite as expected. I was up w/ Kylie most of the night, not w/ seizures but w/ her coughing and choking on her mucus. She seems to have caught some cold and could not get comfortable. She had a few seizures throughout the day and right after we got her dressed to go to the fair, she started up w/ her "exorcist" vomitting. She also had a slight fever at the time. We changed her and were going to give it another try when she started vomitting again. She barely drank anything all day and if she is still not feeling like herself in the morning, I'm going to bring her in for a check-up. She had the same thing a few weeks ago and I just assumed it was the 24 hr flu, but now I'm not so sure. The doctor changed her meds around this week, same as the last time she was sick, so I'm hoping she's not at toxic levels. Dr Frost leaves for London tomorrow, so I'm worried about her being sick w/ him gone. =) Hopefully tomorrow will be a better day. Grandma Karen and Uncle Andy were nice enough to stay w/ Kylie so Neil and I could go to the fair. I did get my deep fried pickles, so I was happy. Kylie has OT in the morning and then we make a stop at the doctor's. It was nice to see her have fewer seizures today. She had maybe around 10. Praying that they will be even fewer in the upcoming days. That's it for now. Sweet dreams! Love The Gibbons Family

Wednesday, August 24, 2005 11:45 PM CDT

Good evening. Kylie started the day by waking up at 6am. We have gotten her on a better schedule where she is going to bed earlier and staying asleep, but I forgot the drawbacks of an early riser. =) Luckily, she will play quietly in bed w/ me until I can muster the courage to haul my butt out of bed. She didn't nap much today, so I am hoping she will sleep a little later. She had OT at Gillette's feeding clinic today. We didn't make a lot of progress and she had 2 seizures during our 30 minute appointment but she was happily entertaining everyone. She spit and blew raspberries the entire time. The therapist said what she that by doing that, it is good because it is the developmental precursor to speech, but Kylie seems to be doing it to have a good time and to avoid eating. She is going to speak to the speech therapist about some ideas and possibly set up a speech eval, (another appt!) After therapy, we picked up Auntie Kari and her friend and headed to the MOA. Kylie loves it there- all of the people, the lights, the noise. She flirted w/ everyone who walked by and got many comments on what a cutie pie she is. She got a lot of new fall and winter clothes today and even her first pair of real tennis shoes (pink new balance). She practiced standing in them today and did great. We visited Grandma Karen for a bit and then headed home. SHe hung out w/ her dad while I crashed for 3 hours. I forgot how tiring pregnancy can be! Tomorrow we need to run a few errands and then in the evening, it's off to the fair! I am looking forward to deep fried pickles (yum!) and to taking Kylie down the giant slide. Keeping our fingers crossed for no rain. I work all weekend and next week is full of therapy appts, an OB appt, Kylie's helmet fitting, etc. Kylie's Uncle Ben heads back to college this weekend, so it's going to be quite lonely for her (and us!. As soon as he walks in the room, her face lights up. He calls her "my baby" and takes such great care of her. We will miss him but will see him a lot on weekends. That's all for now. Have a great night. Love The Gibbons Family

Wednesday, August 24, 2005 0:28 AM CDT

Today was a hard day. I found out this morning that a little boy we met while on the epilepsy unit had passed away Monday night. He had been diagnosed w/ a fatal genetic condition last week and had been in ICU due to the many seizures he was having. I guess it really hit close to home. I can not bear the thought of anything happening to Kylie, yet when she is having so many seizures, it is always in the back of my mind. And since we have no idea what the future will hold for us, I am afraid that one day we may have to live my worst nightmare. My heart is breaking for Drew's family tonight. All I wanted to do today was hold Kylie close, but alas, I had to go to work. I am once again questioning my faith in God. I am so tired of seeing children all around us in these heartbreaking situations. The struggles that they have to go through are so unfair. Kylie continued to have many seizures today. Carol, from Dr Frost's office, called today. They are increasing her felbatol and starting to decrease her depakote. I am not holding my breath that this is going to work. I may load her tomorrow if things don't change. She has OT at Gillette in the morning and then we are headed to the MOA to get Kylie some fall clothes. That's all for now. Praying for better days ahead. Kiss your babies and hold them close tonight. Love The Gibbons Family

Monday, August 22, 2005 9:27 PM CDT

**Update 8/23: Our friend Drew lost his battle last night and earned his angel wings. Please keep hi family in your prayers. www.caringbridge.org/mn/drewolson
Good evening. I just updated the pictures on the website, so take a peak! Kylie and I ditched OT this morning. =) We were awake but were just too snuggly in bed to get out. We played in bed for about an hour and I'm glad we did it. I am so sick of running to so many appointments and things everyday. We did OT at home today and Kylie is doing much better at going from a sitting position to her belly- she did it a few time today. One of the time she actually got to her hands and knees from sitting, then collapsed. She also learned to blow bubbles in the bathtub and to do the indian call (banging her hand on her mouth while making noises). I'm hoping some of these new things will replace the spitting but I am not holding my breath. She still continued to have seizures throughout the day, although not as many as yesterday. We spent the day cleaning and getting ready for fall by going through Kylie's wardrobe (not as elaborate as it once was!) We set up more dr appointments for her pre-op physical, complete w/ an EKG and chest X-ray, as well as her 12 mo check-up appointment. We walked to the local coffe shop w/ our neighbor Sue and the dogs. We haven't walked as much as I would have liked to this summer (it was too hot for her to be out) but feeling the fall chill in the air was great! Kylie had a blast, kicking her feet and blabbering away. She went to sleep about 8pm so I am crossing my fingers she stays asleep for the night. We missed Dr Frost's call earlier but they are supposed to connect w/ us in the morning about Kylie's med changes. They are going to begin weaning her depakote. That all for now. Have a good night! Love The Gibbons Family

Sunday, August 21, 2005 10:15 PM CDT

Good evening. Our 1st Annual Kylie's Hope Golf Tourney turned out great yesterday! We had beautiful weather, a good turnout and raised over $9000 for TS Research! Thank you to all our participants, hole sponsers, the girls who helped out at the holes, the Kelly Gibbons Family, Kari Carlson and her son, Jessi Gibbons, for helping w/ the decorations, to all who donated prizes and to Joe Sensors, who did a great job w/ the dinner. We couldn't have done it w/o all of you. Kylie was in a good mood throughout the tourney and we loved seeing everyone. Next year we plan on bigger and better. Unfortunately, Kylie's seizure free run ended this morning. She started having seizures at 530am and had about 10 by 830 am. She ened w/ somewhere around 20. We will be calling Dr Frost's office in the morning for a med update. She also has therapy at Gillette in the morning. I am bummed that the seizures have come back, athough we knew it was inevitable. Hopefully someday the doctors will find a med that works long-term. Tonight we headed to great-grandma and grandpa's to celebrate Kylie and cousin Ryan's birthdays. Great-grandma is having shoulder surgery in a few weeks and will have to miss the real day. Kylie got lots of cute clothes from everyone- thank you all so much! Kylie turned 11 months old yesterday. Only one month until the big day! We have a busy week this week, full of therapy appointments and work but we do plan on taking Kylie to the MN State Fair for the first time on thursday. We are going to go down the giant slide and her mom is looking forward to deep fried pickels. We are going to go watch movies. Continued prayer requests for seizure free days. Love The Gibbons Family

Friday, August 19, 2005 7:04 PM CDT

Good evening. Kylie's ear surgery to get tubes is all set up for Friday, Sept 9th. Hoping all will go well w/ it and she will not come down w/ an ear infection before then. Her birthday party is going to to be on Sunday, Sept 25 and any and all are welcome to join us. We will post more details at a later date. Big thank you to Grandma Karen, who kept Kylie overnight last night and watched her today so I could sleep. I eneded up working a double at work last night (3pm yesterday to 8am this morning) and man- was I ever tired. Neil has been busy working on the 1st Annual Kylie's Hope Golf Tournament, in which we are raiseing money for TS research. The big day is tomorrow and things are looking good! We have 18 teams of 4-5 people playing, many friends helping out at different holes and the sponsers/donations keep coming in. We are hoping to raise a lot of money for research, so maybe one day young parnets won't have to go through what we are going through today. Our hopes are that one day Kylie will be able to raise a family without worrying that her child may have TS. Tee off is at 1pm at Come Golf Course tomorrow and dinner to follow at Joe Sensors in Roseville. We will let you all know how things turn out! Kylie is getting much stronger on her legs. She has been standing everyday for short periods of time, which are getting longer everyday. She ate well for Grandma and is now hanging out w/ Uncle Ben and buddies, watching the Vikings game.
I am happy to report still no seizures!!!! Prayers that this will continue. We are also requesting special prayers for all of Kylie's friens we have met on our journey- For Zoey, who will be having a hemisherectomy in the near future and who has also been seizure free for a week (way to go Zoey!); for Mary H., whose seizures have returned since having brain surgery in Dec, that they will quickly get under control; for Jessi, who has been doing great in her new therapies; for Jonathan, that the seizures stay away; for Carl, that he and his family may find peace during his final months and that he will bear no suffering; for Jess B, that her seizures will get under control; for Gavin B, that he will continue to have seizure control; and finally, for Drew, a friend we met when this all began, who is in intesive care right now, in a drug induced coma to try and stop his seizures. His family got some devastating news this week and need many prayers for Drew and his new baby sister. May God grant them a miracle and shine His light on all of these precious children. We have met so many truely amazing and inspiring familes on our journey, who have gone through things that I pray most of you will never have to know. They are some of the best mothers and fathers that I will ever meet and have children that all hold a special place in my heart.
I want to thank all of you who have traveled this journey with us- your love and support mean so much. Thank you for continuing to check in on this site and for signing the guestbook. It is truely the highlight of our day seeing your loving words. Hope you all have a great weekend!
Hugs and Kisses from Kylie~ Love The Gibbons Family

Thursday, August 18, 2005 0:27 AM CDT

Hi all. I just have to brag and say that I have the cutest kid. She wakes up w/ smiles and giggles every morning and is so happy throughout the day. We went to the feeding clinic at Gillette today and were sitting in the waiting room for awhile. There was a little girl sitting next to us, reading a book and ignoring Kylie. So Kylie waves to her nothing- then, she stars blowing raspberries at her- still nothing. So then, Miss Manners starts spitting at her and grabbing her arm- that got her attention but no smiles. Kylie then looks at mr like, Why doesn't she think I'm cute? It was so funny. Well, except for the spitting part. The raspberries have turned into spitting at times and we really need to work w/ her on not doing it (instead of laughing at her- you know who you are!) Even during therapy, when the therapist was trying to get her to eat, Kylie started spitting it back at her, which the therapist said, "I know I shouldn't laugh at her but she is so cute!" We ended up giving Kylie melatonin last night to help her sleep and she slept from 1030pm until 830am and I had to wake her up. It was great! (Until I woke up in the middle of the night and found Neil using Kylie's head for an elbow rest- she slept though it) This was day 2 of no topamax and we couldn't be happier. I am happy to report that neither Kylie nor Zoey have had any seizures since friday (knock on wood)! Big prayers needed that their relief will continue. I am assuming Kylie's will resume this weekend but we will see. I went back to work tonight after my long vacation and man was it hard to leave Kylie. To top it off, it wasn't the best night at work and it made me miss her even more. But she had a fun time hanging out w/ her dad and Uncle Ben. I am frustrated about her upcoming ear surgery. I called to set up a surgery date yesterday and left a message and still haven't heard back. Every time I call, I get the same voice mail. I want to get the ball rolling before she gets another infection and the seizures get bad again. We need to connect friday w/ Dr Frost's office to update them on how she is doing and then we start the depakote wean- this is the med that makes her vomit. We are tentatively planning her b-day party for Sept 11 or 25th, depending on a few family member's work schedules, so we will keep you all updated. The big golf tourney is this weekend, so keeping our fingers crossed for good weather. That's all for now. Good night! Love The Gibbons Family

Tuesday, August 16, 2005 7:57 PM CDT

Good evening. We had a busy day toady. This morning, Kylie saw the eye doctor, who said her vision has improved by 20%. She now has a borderline need for glasses (she is far sighted and it is totally unrelated to TS) but he will recheck her in 6 months and is hoping things will improve even more by then. So st least we got some good news for a change! They dilated her eyes and I forgot the sun would bother her- poor kid- she was totally blinded by the light when we left. We then headed over to Nikki's school, where we helped her get ready for the year and then had lunch w/ her and Noah. After that, we picked up Neil and headed over to see Dr Frost. Here is the plan- He stopped the topamax completely and is going to start weaning the depakote. He looked at her labs from Friday and neither her felbatol nor her trileptal levels were at a therapeutic levels, which is good, because it gives then room to increase her med doses. Only problem was that her sodium level was low, which he said could have been why she had so many seizures last week but that the trileptal could be the reason for the sodium level being low. He said it is rare and that they have only seen it in adults but it can happen (great!) We also discussed her having surgery. At this point, we don't know if she will be a surgical candidate. The reason being is that the out-patient EEG she had in July showed her seizure activity coming from the left central region. Her EEG that she had done while she was in-patient at the hospital showed all her seizure activity was coming from the right post occipital region. They would not do surgery on both sides of her brain so if she really is having seizures from both sides, we are kind of out of luck. I am freaking out because surgery seems to be her only real hope for a normal life. Dr Frost said her is going to review her EEG again and decide what is really going on. They good thing is that we are seeing the exact same seizures every time she has one- they all look the same. He said that may be suggestive that they are coming from the same area. We are going to see how the med changes go over the next few weeks (not months). If she continues to have 20-30 a day even w/ the meds being changed around, they are going to get the ball rollong to see if she is a surgical candidate. We would fly ou to detroit to have a PET scan done. There is a doctor there who designed a special PET scan for TS kids, where the tubors are located and the ones exerting the most seizure activity are highlighted. By the time we had that done and got the results back, it would be about 3 months. Dr Frost would then present the findings to the surgical conference team, who would decide if Kylie was a candidate. If so, it would take about a month to get things set up. She would first have a grid placed on her brain, (which is a surgery in itself). The grid would tell the Drs if her seizures are coming from an area that if removed, would effect her motor or senses. If it would effect them, they wouldn't remove that tubor or part of her brain and we would be back to square one. So as you can see, the whole process is long and complicated. If they decide to do surgery on her, we would be looking at a Christmas/New Years surgery- somewhere in that time frame and right about the time I will be close to giving birth. If Kylie continues to get worse at a quick rate, they will be more agressive at trying to get things set up. We are all hoping that after she gets tubes in her ears, which will happen in the next few weeks, that her seiuzres will be better controlled and that she won't get as sick as often as she has been. The next med we would try would be Zonagren. The good news is that the seizures don't seem to be slowing her down developmentally. She is trying so hard to talk and is mimicing sounds we are making. She is still not crawling but we are working hard at it. Our schedule is going to be full this fall. She will have PT and go to the feeding clinic at Gillette (where they will try to fix her horrible eating habits) on Mondays; Wednesdays- we go to Gillette for PT and OT; Thursdays- she has music class through Kindermusik; Fridays- home OT w/ Angie and Saturday mornings we have swim lessons (and mom is dreading getting in a swimsuit!) This kid has a fuller schedule than any adult I know. I am back to work tomorrow and looking forward to some adult interaction. We are adding a sleeping pill to Kylie's night time meds (last night she was up until 3 am), so hopefully we can all get some sleep. The first annual Kylie's Hope golf tourney is this Sat and we are keeping our fingers crossed for good weather. Thanks to all of you who have donated prizes, who are golfing and who are helping et things set up. We are hoping to raise a lot of money for TS research. We, that's all for now. Thank you for continuing to check in on Kylie- your support means so much! We are praying that this year we get our Christmas miracle. And did I forget to mention? Still no seizures sice Fri! =) Love to you all- The Gibbons Family

Monday, August 15, 2005 8:56 AM CDT

Good morning. Kylie had a great weekend. No seizures since friday night, except last night she seems to have caught the stomach flu. Poor baby was up vomitting every half hour, with a blood curtling scream. Otherwise, she was totally unconcious. This morning, she is is a better mood but does have a slight temp. We are going to hang low today. We didn't do much this weekend, just hung around the house and played, enjoying no seizures. I am going to go snuggle w/ Kylie on the couch now. I will update later if there are any changes. Prayers for continued seizure free days and no more flu! Love The Gibbons

Friday, August 12, 2005 11:04 PM CDT

Good evening. What a day. Kylie had somewhere between 20-30 seizues today, none lasting more than 15 seconds but if she has any more tonight, I'm going to load her w/ valium. We both could use a good night sleep! Last night, the weather turned out to be beautiful and we had a nice walk around Lake Phalen for the Epilepsy Stroll. My mom, Uncle Ben, Laura, Baby Elaina, her mom and grandma joined us for the walk. It was nice to see other families that we have met through our journey there. Special prayer request for Drew and Maddie, both who are having a hard time right now. And for Zoey, who is actually doing very well right now. We pray for continued good days for her. And of course, for Kylie Jo, who could use a few good days herself. Kylie also got fitted for her helmet yesterday, which needs to be special ordered to make her size and her signature color-pink. Kylie had therapy with Angie this morning, who worked her hard. Kylie and I both had to have blood drawn this afternoon. Kylie had to get stuck twice, as they couldn't get enough blood from her. She cried and I did not. =) We then went up to 7940 to visit Jonathan, another TS friend. Please keep him in your prayers while they try to get his meds figured put. We then went out to lunch and then off to the ear doctor. Unfortunately, Kylie's hearing is pretty poor right now and we are definately going ahead w/ the tubes. Her right ear scored worse than her left, but she had a lot of fluid in both, so we are hoping that is the source of her hearing issues. Also, that fluid will most likely turn into an infection in the next few days, so we will probably have to add a visit to our ped on our list of things to do next week. They will be scheduling her surgery to happen in the next 2-3 weeks. She will have the surgery at Children's, instead of as an out patient, in case they need to keep her overnight. I am praying that this will help lower her number of seizures. We also talked to Dr Frost today and he stopped her morning dose of topamax for good (yeah!) and will most likely stop her night time dose on tuesday, when we see him in clinic. Kylie also sees the eye doctor on tuesday and if he tells us she needs glasses, I am definately throwing my "What to Expect the First Year" book in the trash, because it left me totally unprepared for parenthood. =) I think I will write my own version, called "Everything You Never Would Expect to Happen Could." It may be a number one seller. =) Big thank you to Auntie Kari and Grandms Karen, who baby-sat tonight. Neil and I went w/ Ben and Laura to the Vikings game (my first) and we had a great time, (except for when the guy in front of us got hauled off by the MPLS police for having a gun). But the Vikes won and we stayed safe during the game. Happy birthday to Ben, who is 20 today. He is having a big card party here tonight so I think Kylie and I are going to sneak upstairs. We are going to be spending the weekend working on the TS Golf Tourney and working on the house. Hope you all have a great weekend and enjoy the final days of summer- fall is coming fast! Love The Gibbons Family

Thursday, August 11, 2005 12:57 AM CDT

Hi all. Tonight is the Stroll for Epilepsy, around Lake Phalen in St Paul. We will be there, rain or shine, so wish us luck! Any brave person is welcome to join us! Kylie had a busy day yesterday. She eneded up having 22 seizures and was loaded w/ diastat once. I talked to Dr Frost last night because I was concerned about having to load her so much and even w/ the load, she still has seizures, except she is "drunk" during them. He had us give her an extra dose of trileptal last night and skip her morning topamax. He changed her load criteria to if a seizure lasts a minute, then she gets loaded. Luckily, we haven't hit the minute mark yet. She recovers well after each seizure, screaming, yelling, laughing and blowing raspberries. She has not been having seizures in her sleep, until last night, when she had somewhere around 10. It was a very long night for me. Yesterday, we took her to the MN Zoo. Her favorite exhibit was the monkeys, especially when they got in a fight right in front of her and were making a huge racket. We saw the Gibbons monkeys =), which she got a stuffed animal replica of and she loves it! Thank you to Sue, who babysat last night so we could down errands, and yes- girls pee down, not up. =) Kylie had OT at Gillette yesterday, which they will be increasing to 2 days a week, one day at the feeding clinic. Angie will still come on Fridays for OT, and we are adding PT 1-2 days a week. Kylie has a fuller schedule than I do! Later this afternoon, we are taking Kylie back to Gillette so she can get fitted for her cute, pink foam helmet. Tomorrow, she and I both have to get our labs drawn, we are visiting our friend Jonathan on 7940, and we see the ear doctor to find out when she will be getting tubes. Tomorrow night, Neil and I are going w/ Ben and Laura to the Vikings game. Well, I will update tomorrow. Have a great day! Love The Gibbons Family

Tuesday, August 9, 2005 10:40 PM CDT

Good evening. All I can say is- wow. What a day! I want to extend a huge thank you to the Keys Cafe Family, who but on an amazing benefit for Kylie today. You people are truely awesome and have touched the hearts of my entire family. I can't even begin to thank you and to all of the people who came, who offered words of support and encouragement- thank you so much. Unfortunately for Kylie, today was not her best day. She was awake until 230am last night, then had 5 seizures w/in 45 minutes this morning, so we loaded her w/ a new med, diazepam. She was "drunk" for a good part of the day, then snapped out of it and continued to have many seizures throughout the day. We ended up loading her w/ valium the evening and are hoping she will get a break for awhile. It is so hard to watch her have so many seizures again when she did so well last week. I know I should be greatful that she did have a good week, but I want that week back. It was nice to feel "normal" again. We met a beautiful little girl today at the benefit who has Edwig's Sarcoma (sp?), a type of bone cancer. She was in remission but it has come back. She will be facing many months of chemo, radiation, a stem cell transplant, etc. Please keep Maryah and her family in your prayers. Tomorrow Kylie has therapy and then we are going to take her to the MN Zoo, where she can practice her monkey screaching. Keeping our fingers crossed for an uneventful day. She has been tugging at her ears again-at least we see the ENT doc on friday. The genetics office called today and said it would be at least 2 more weeks before we get our results back, which does not lead me to believe we are getting good news. Keeping all fingers and toes crossed. I'm going to try and get Kylie to sleep now. Sweet dreams to you all- Love Maria, Neil and Kylie Jo

Tuesday, August 9, 2005 0:12 AM CDT

Hi all. Well, another day full of seizures. We didn't count but at least over 10, although none lasting more than a few seconds. She is conscious through them, actually trying to play at the same time. Carol called today and they decided to increase her trileptal at night. Dr Frost wants to see her next tuesday, which makes me a little nervous since we weren't supposed to see him until the end of Sept. Oh well- hoping he has a good plan in mind. We have a busy week ahead of us. Tomorrow, Keys Cafe is having a benefit for Kylie. They have been so good to us and we really appreciate everything that they have done. Wed Kylie has therapy and then we are going to take her to the MN Zoo. Thurs eve at 6pm, we are doing the Stroll for Epilepsy around Lake Phalen. Many of our new friends that we have met through 7940 at Children's will be there and any and all are welcome to join us. Friday, Kylie sees the ear doctor, so we can find out when she will be getting tubes. On tues next week, she sees Dr Frost and also the eye doctor. By the way, it is 1220am and she is wide awake, yelling and singing. Last night, she went to sleep at 845pm and slept until 930 am. So much for getting her back on schedule. She has really discovered her voice over the last few days and has been keeping us entertained. We are going to be a lot of intense therapy w/ her, hoping to get her legs stronger so she can start crawling soon. I haven't figured out how I will be carring her when I am 9mo pregnant. Scarey thought! Good news for our friend Zoey- no seizures over the weekend and she got to go home tonight! A nice reprieve before surgery. Please continue to keep her, as well as Kylie in your prayers. It was so nice to have a week of "normal" and I would like to see that for her again. Well, that's all for now. Peace to you and yours- The Gibbons' Family
PS Check out the new pictures

Sunday, August 7, 2005 6:48 PM CDT

Hi all. We are back from our weekend at the lake. We had a great time, (thank you Reen and Ron), although unfortunately, the seizures are back. We noticed a quick few on Friday, a few more yesterday, then today, she had 8 by 12pm, so we loaded her w/ diastat (rectal valium) and she hasn't had one since, (knock on wood). They have all been very quick, just a few seconds, but we know what they will eventually develop into. I need to call Carol tomorrow anyways, so hoping we can get things under control again soon. Kylie was in a good mood all weekend. She was full of giggles and belly laughs and a few moments of fake cries. She swam w/ Auntie Kari in a lake for the first time, found out she does not like the feeling of a fish on her skin, got her first kiss from a boy, (16mo old Bjorn), and slept in until 11am yesterday! Of course, I freaked that her meds were all 3 hrs late and feeling very guilty about it! She has really found her voice, screaching and yelling all weekend. It was so good to get away. Neil and I are on vaction all week, so we plan on spending a lot of quality time together and w/ Kylie. That's it for now. Hope you all had a great weekend. Love The Gibbons Family

Friday, August 5, 2005 1:03 AM CDT

Hi all . Not much new to report- (I love it!) Kylie has been doing great and has been keeping us all entertained. I am praying the seizures stay away- she has not even been crabby since last week- not at all. So maybe it was seizures causing her irritablity and not her teeth? I also want to share with you something that I feel has had a direct effect on Kylie's progress- Last wed, the Franciscan Nuns of LaCrosse, WI started praying for Kylie, 24 hours a day, until Aug 2. The seizures stopped about 24 hours after they started praying and haven't come back since. Coinscience? Maybe. But I firmly believe the big guy upstairs is hearing us. Now, if things could just stay this way. Life feels good again and Kylie is so happy. We are even going to go out of town tomorrow. I'm super nervous but am hoping things are ok. We will just bring our many emergency drugs with. =) Kylie spent the evening w/ my mom, while Neil and I both worked. I had dinner w/ Josie, Zoey's mom and I am happy to report that Zoey has had only 1 seizure a day for the last 2 days! She is also acting more like herself. They are probably going to schedule surgery for the week of Aug 15th. Please continue to keep them in your prayers. And of course, please continue to keep Kylie in your prayers. Love to you all- Maria, Neil, Kylie and baby ? due in Feb

Wednesday, August 3, 2005 8:48 AM CDT

Good morning. I am writing from my mom's house this morning, as we were literally "skunked" out of our house last night. There was this horrible smell, like a burnt vaccum belt, all throughout the house. We couldn't figure out what the heck it was but at 2:30 am the fire dept was kind enough to tell us it was a skunk. Apparently, Bailey (the golden retriever), had a run-in w/ a skunk in the back yard and when she came in, she shook it all off. Yuck! So, Kylie and I slept at my parents, while Neil tried to figure out a way to air out the house. We had a busy day yesterday, filled w/ doctor appointments and neighborhood parties. First, Kylie had a folow-up hospital check-up, where we found out that she will be getting tubes in her ears. Her fifth ear infection was the deciding factor. So, we will schedule that sometime in the next few weeks. She will have it done at Children's and may stay overnight as an in-patient, just because of her history. She also got a shot , which made her very sad! Yesterday afternoon, Andrea came w/ me for my OB appt and we got to hear baby #2's heartbeat for the first time. So far, so good. We will schedule another U/S for 6 weeks from now, to see how everything looks and to hopefully find out the sex. Praying for a healthy one! Miss Kylie is still doing great. No seizures that we have seen since last thursday. Knock on wood and praying things stay the same. She has been doing so good. She is full of giggles and rasberries, although she is still staying up to at least 1am every night. I guess we are going to have to add a sleep aid to her nightly meds. Although, it is nice she sleeps in in the morning. Last night, we went down to Cottage Grove and watched Andy fly out in his blackhawk- no crashes, so we were impressed. =) After that, we headed up to North Dale for the annual Summerfest. Kylie loved palying in the grass. Well, she is still sleeping but I have to get her up for meds. Sue- hoping you got to sleep last night after our drama. Sorry! Have a good day everyone! Love The Gibbons Family

Monday, August 1, 2005 9:16 PM CDT

Hi all. Sorry for such a long time between updates but I worked nights all weekend and have been exhausted! We had a little scare yesterday, w/ me making a trip to the ER. They were thinking it was maybe appendicitis but turned out to be a build-up of scar tissue from my gallbladder surgery, getting squished from the baby. We had another ultrasound of #2, who was happily swimming around and looks very good so far. We are praying things stay that way! I'm scared to even say it because I ALWAYS end up jinxing us, but so far, no seizures since thursday! Kylie had the one 3 minute seizure that we had to load her for and none since. I know more will be in her future, but what a blessing to let her little brain take a break. So is so much more alert and fun! She spent the weekend w/ my parents, visiting her great-grandparents and going to a picnic. Thank you so much to my mom, who took such good care of her. We are still having the night time sleeping issue, w/ Kylie staying up until 12am-2am, but it is hard to care because she is a great mood during it. Tomorrow she goes to see her ped for an ear check-up and to get shots- hoping they don't lead to seizures. We are going to be discussing when she will be getting tubes. I have an OB appt in the afternoon and then we are heading down to Cottage Grove for National Night Out, where Grandpa Tom is selling hot dogs and Uncle Andy is flying down on his Blackhawk- any one in the area come join us! I just work thursday this week and then am on vacation for 10 days. We are going to a cabin this weekend, for some much needed R&R. Praying that the seizure monster stays away. Can you believe Kylie is going to be a year old next month?! The time has just flown by. We are planning on having a big b-day party for her and everyone is invited to meet her. We will follow-up w/ details later. The golf tourney is really coming together. We are finalizing everyhting this week, so if you plan on golfing or going to the dinner, money must be in by Friday. Everyone is invited to the silent auction after the dinner. Again, big thanks to Kelly G for all your hard work. Many prayer requests for Zoey, who will be having her brain surgery this week or next. May God wrap his arms around her and keep her safe. Continued prayers for Kylie, that the seizures will stay away and that the meds will continue to work. Thank you all so much! Love Maria, Neil and Kylie Jo
PS One thing I forgot to mention- on Thursady, August 11th, at 6pm, I invite you to join us for a Stroll for Epilepsy, around Lake Phalen (3.2 miles). We had planned on doing the walk as a family and are doing it for all the kids w/ epilepsy that have touched our lives- mainly, Zoey, Mary, Jessi, and of course, Miss Kylie. If anyone is free that evening, feel free to join us!

Thursday, July 28, 2005 11:59 AM CDT

Hi all. This will be quick. Anyone who is planning on doing the Aug 20 golf tourney, we are trying to collect the money ASAP- If your husbands, boyfriends, wives, etc are golfing but you are not and you still plan on going to the dinner, the cost of dinner only is $30. We need to give the place a head count next week so we are trying to get the numbers finalized. We are planning on having a silent auction after dinner and anyone and everyone is invited to join us. We are figuring dinner will be somewhere around 6-630pm. I forgot to mention a few thank yous- To my cousins, Lisa and Lori, who visitied us at the hospital and stocked us w/ yummy treats and for the fun new toys for Kylie, to our neighbor Sue, who took care of our small "zoo" while we were away, and to Nikki S, for the yummy dinner our first night home- you guys are all awesome and we appreciate everything you do for us. Miss Kylie is on a new schedule of going to bed at 9:00pm and waking up at 1130pm to party until 2am. She has done it for the past 3 nights and is driving us nuts! She is spending the weekend w/ my parents this weekend while Neil and I both work, so guys- be sure to stock up on the caffiene. Yesterday Kylie had 8-9 seizures. I haven't seen any yet today. She has been in a great mood today, full of belly laughs. We got out last night and walked around Como Lake and had a picnic after. Big prayers for Neil's Aunt Jessi, who is having her masectomy today, as well as for our friend's at the hospital. Zoey's family found out that she is not having seizures on the other side of her brain, which is great news. Now they are deciding when surgery should take place. Praying for peace and strength for them. That's all for now. Continued prayers for Miss Kylie. Love to you all- Maria, Neil and Kylie Jo
**Update- Grrr. I spoke too soon. I just had to load Kylie w/ diastat for a 3 minute seizure. Hopefully it will help through the rest of the day. I am going to add new pictures this afternoon of our hospital stay.

Tuesday, July 26, 2005 9:15 PM CDT

We are home- exhausted, but home. Kylie had 5 seizures at the hospital and 3 since we have been home. Progress, I guess. We had a conference w/ Dr Ritter today, Dr Frost's partner. He went over Kylie's EEG w/ us and it actually looked really good. Her EEG does not look like one of a person who has epilepsy, even when she is having seizure activity, which is good. Her seizure activity looks relatively mild, even though her seizures look bad in person. They also said that she is not having seizures in her sleep, just doing normal twitching that people sometimes do. I know the seizures that she was having at home in her sleep were in fact seizures- they looked the exact same as the ones she was having while awake, so I'm not sure what to make of all of it. So here is our plan- we are increasing the trileptal, hoping to get it to a therapeutic level. We are weaning the topamax, hoping to be off of it in a few weeks. We are increasing the felbatol and keeping the depakote at the same dose. We also added zithromax for a few days, as we left the hospital w/ an ear infection, #5 in the same amount of months. We follow up w/ her ped in a week and will be discussing when she is getting tubes. We are going to work on her meds for the next three months. If, after 3 months, she continues to have as many seizures as she is now, we could try the ketogenic diet, which consists of a high fat diet and we do not think we will try, or get ready for surgery. There will be many tests she will have to go through to get her ready for the surgery and part of it will consist of us going to Detroit, but if it will give Kylie a chance at a normal life, we will try anything. I just didn't know that we will be trying so soon. The doctor believes Kylie's seizures are orignating in her right post-temporal region, in an area that, if they were to do surgery on, would not really damage anything important. The few things that happen in that area would transfer to the left side of her brain, especially because she is so young. We would have to have further EEGs, because the next one could show seizure activity in a different area. If that were the case, surgery would not be as likely but if the seizures are still coming from the same area, surgery would be a go. It makes me physically sick to think of my baby's head being cut open but at the same time, gives me hope for her to have a normal life. Hoping the meds will work and we won't get to that point.
I want to take a few minutes to share about the amazing people that have touched our lives during our stay. The first one is Kylie's newest friend, baby Carl from ND. He is 1 1/2 years old and today, his parents found out that he has 6mo-1yr to live. He has a genetic disease called leukeodystrophy (sp?) and is such a sweet little boy. He has curley blond hair, long black eyelashes and a cry the would melt your heart. He loved my mom's singing and the fluffy dog Sasha that came for a visit. He is most comfortable on his mom's shoulder and hasa beautiful smile. His mom is one of the the strongest women that I have ever met- even during this trying and heartbreaking time in her life, you can see the pure love and devotion she has for her child. Please pray for peace and comfort for her, her family and especially for baby Carl. The other kiddo I want to tell you about is Miss Zoey, a 4 yo little girl that I have talked about before. Zoey has blond hair, blue eyes and more spunk and determination than I have seen in any other kid her age. She loves the color purple, heart-shaped PB&J sandwiches, cheese, Sponge Bob Squarepants, "The Girls" aka The Power Puff Girls, the game memory, yellow buses and rolling the halls w/ her dad. She loves to say "I need some space!" If you could imagaine an angel of God, she would fit it to a T. Zoey was diagnosed w/ Rassmussins Syndrome, has many seizures a day and possibly is going to have a hemispherectomy, which is the removal of half of her brain. The disease is progressive and usually just affects one side of the brain but the doctors are trying to figure out if the disease has jumped hemispheres and is affecting the other side of the brain. If so, surgery would be out and they would be out of options. I am requesting that you all keep this beautiful girl at the top of your prayers lists- she needs every one. Her parents are two of the most amazing people that we have been graced to meet. They are the parents that every kid deserves to have. Pray for peace and comfort for them as well. Maybe this hospital stay was God's way of showing us that we could have it worse. Maybe it was to meet these extrodinary people, people that would not have come into our lives any other way. For those of you parents out there, take the time to hug your kids tonight and to be greatful that they are there. Overlook the little tantrums, the juice spill on the rug, the lack of sleep you are getting from getting up in the night with your baby, the dinged up car from the your inexperienced teenage driver. Be greatful for these beautiful creatures that God has blessed you with, for the time God has let you have them for. Lives can change in a heartbeat and you don't know how long they will be in your lives for. I have learned what the important things in life are and maybe that is why God has chosen my family to go through this journey- to teach us the meaning of faith, hope and love. Thank you all for you continued prayers. Love, The Gibbons Family

Tuesday, July 26, 2005 4:35 PM CDT

Quick update- we are being discharged today! =) Kylie is napping but when she wakes up we are out the door. I will update when we get home. Love Maria

Monday, July 25, 2005 6:07 PM CDT

I am on dinner break at work so this will be quick. Kylie has had around 10 seizures or so over the day, all of them clustering. Unfortunately, Dr Frost was not here today and the Dr we met w/ is not our favorite. Basically, he said Kylie is running out of med options, which we were assuming. He said we could try the ketogenic diet, which is all fat, in small amounts. I have not heard the best success stories on it, so i'm not sure what we will be doing. Another option is the surgery to remove her tubors but he said he doesn't know if she is a candidate for it. He will have to look at her EEG. I never really even considered the possiblity that she couldn't have the surgery, which may be her only chance at a normal life. After that, the doctor said we are out of options. We are struggling on what to do. We may be taking her to the Mayo Clinic, or Gillette, in the next few weeks, just for a second opinion. I would of felt a lot better if we could have talked to Dr Frost, so I may try calling him tomorrow. Kylie got her EEG wires off today- she has been so crabby w/ her itchy head and teething. I'm going to eat. I'll write in a bit.
(cont 12am) I'm back. My parents hung out w/ Miss Kylie while I worked. She had 3 seizures w/ them. Her trileptal level is not yet at a therapeutic level, so they will be increasing that med. My gut is telling me that med is not going to help and my heart is telling me that we are in for a long haul. I slowly am seeing all of my dreams for her slip away. I have no isea what the future will hold for her. I am just hoping that at some point, God will hear our prayers and help Kylie. Daily seizures really is no way toive, for any of us. Extra prayers are needed for Zoey and her family, as well as for Kylie's new friend, Carl, and his family, who are going through a very difficult time. May God grant their parents the strength and guidance they need to make the difficult decisions that have come their way. I forgot to mention on Sat, we had a visit from baby Lilianna and Alicia. It was so good to see both of them. Yesterday, my family was here, as well as Kylie's friend Mary and her mom Elaine, Nicle, Jay and Baby Noah and Jody. Today, Danielle and the kids came to visit and so did Baby Elaina, her mom and grandma. It is so good to have the support that we do- it you all who help get us through these trying times. Well, I need to go relieve my mom. Kylie slept from 3pm-6pm and then 730pm-1045pm. She is wide awake, blowing rasberries, and waking up the whole unit. It's going to be a long night. We are probably being discharged sometime tomorrow, ao I will update when I can. Love Maria, Neil and Kylie Jo

Sunday, July 24, 2005 8:16 AM CDT

Day 3 at Children's- Good morning. Kylie had a pretty good night- no seizures until 645am. I do keep wondering how she can have 10 a night for me but none at night here? I think tonight I will have her sleep w/ me, just so I can make sure. Her seizures can be so quick that I'm wondering if some are getting missed. Anyways, she had many seizures throught the day yesterday- I really didn't keep count. She did go about 3 hours before bed w/o having one but then had 3 in 10 minutes before bed. Her teething seems to be better since we have been here, which is one bright side. Also, Kylie learned to feed herself w/ a spoon yesterday! We have been struggling to get her to eat any solids for the longest time. Apparently, if you put food on the spoon and give it to her, she will put it in her mouth and chow away. She kept all of us intertained yesterday. She has been flirting w/ the nurses and the other kids, blowing rasberries and having a grand time. I am assuming we will be her until at least tomorrow, when Dr Frost gets back. I am supposed to work tomorrow and tues, so I am hoping we find out early tomorrow if we will still be here. At least I'm only 3 floors away if she is still here. We met another TS family since we have been here and they are great. The mom, all 3 of her kids and 4/5 of her siblings have TS. She made me feel so much better about things. Zoey continues to keep us entertained- she is such a sweetie. My family was here all day yesterday, so it was nice to be distracted. Kylie got to stop her IV fluids yesterday but is still hooked up to the video EEG. There are so many great kids here w/ so many different issues, yet they are so strong. Please keep them all in your prayers, as well as Miss Kylie. I'm going to go get Kylie up for breakfast but I will update later if there are any changes. Thank you to all of you who have been signing the guestbook- it really keeps our spirits up. Love Maria, Neil and Kylie

Saturday, July 23, 2005 11:14 AM CDT

Day 2 at Children's: Not much change here. Kylie has had about 8-9 seizures so far today, although she went from 9pm last night antil about 745am today w/o having one. Of course, Grandma Karen stayed w/ Kylie last night so Neil and I could get a good night's sleep- she must have the magic touch. Big thank you to Grandma for letting us sleep! I only slept 2 hours yesterday and not much more than that the last 4 days. I was dizzy and exhausted last night. And then Neil decided to add to the fun- he spent the evening in the ER, after experiencing chest pain. All the work-up turned out to be negative, (thank God). I gues this is a sign that Neil needs to talk about his stress instead of keeping every thing inside. =) He has to follow-up w/ his regular doctor this week. Kylie is again hooked up to the EEG, which she hates. Although she looks drunk, she is much more active this time around- trying to pull her wires off and trying to pull her IV out. She managed to pull a cotton ball out from her IV sometime during the night, as they found a big wad of it in her mouth this morning. She was happily sucking away. We have gotten a chance to know Zoey's family more, as they are our roomies. Zoey is a 4 yo w/ Rassmussins Syndrome and is also having many seizures. Pray for her and her family for guidance as they decide what to do. We are still waiting to see Dr Pennovich, (Dr Frost's collegue). She is in back looking at the EEGs. Kylie is snoozing. Her face is all swollen and she doesn't even look like herself. We are just hanging out, bored out of our minds. We had a nice visit yesterday from our old roomie, Elaina and her mom and grandma. It was so good to see them! Elaina looks great. Kylie's Auntie Kari, Uncle Ben, Auncle Andy and Aunt Andrea, as well as Jody, came to visit last night. Uncle Ben told Jody and Andy that if Kylie has a seizure, they need to clap loudly 4x and yel, "Seizure, seizure, seizure." =) Of course, he was lying to them- just wanted them to look stupid but they believed him.=) Grandma Karen finally told them the truth because we were laughing so hard. It's nice to have "lighter" moments and Ben is our source of provideing them. That's all for now- I'll update w/ any changes. Love Maria

Friday, July 22, 2005 9:10 AM CDT

UPDATE** Hi all. I finally got a chance to sit down and write. We were transfered to 7940 (the peds epilepsy unit), room 7945. Our # is 651-241-7917. We are unsure how long we will be here and what the game plan is. We are waiting to talk w/ Dr Frost. Earlier, he said he had to "go figure out a plan." Reassuring? =) We arerooming w/ Zoey and her family. I think between the two girls, they are going to keep the nurses hopping. As soon as we rolled on the floor, she had a seizure, then Zoey had one a few minute after. Dr Frost is here. I'll be back. He is going to hook her up to the EEG, at least overnight. They are going to try and catch her clustering. I will update more later. Maria**** This is grandma Karen updating for Maria. Kylie is back in the hospital. We couldn't get her seizures to stop last night despite 3 doses of diastat over 24 hours. We took her to ER at midnight to be admitted. She was a trooper and smiled and did the rasberries to the nurse when they put in her IV. They are giving her IV phenobarbital and she is sleeping soundly at this point still this morning. The epilespy unit was full so they put her in room 4106 at Childrens until a room opens up on the unit. We don't know how long she will be there this round. Please pray they can help her stop those nasty seizures. She is truely an angel, such a good natured sweet baby. It breaks our heart to watch her go through so many seizures. Maria is totally exhausted with stress and morning ( all day ) sickness. They are handling things the best the can and I admire how for a couple of newlyweds that they are doing as well as they are. They are so much in love and are the best parents Kylie could ask for. Going through all of this would be stressfull on any marriage but they remain strong. I hope God can help the doctors figure out how to help Kylie so they can all have a more normal life. Watching your baby have seizures everyday is no way for anyone to live. They don't get good sleep and have no social life. They can't keep her out of their site at all and it is hard to keep up with things around the house. All in all things could be better but as they know things could be worse too. Thanks to everyone who reads this site. Please sign from time to time so they can see who is reading. It is always nice to see people sign the guestbook. Hopefully today will be a better day for both of my girls. **** 1:00 p.m. I just talked to Maria and they will be moving Kylie up to the epilespy unit this afternoon. In fact she will be rooming with Zoey. Not the way they wanted to meet but it will be nice for them to share with each other. Still not sure what the game plan is for Kylie. Maria will most likely updat later
Grandma Karen

Thursday, July 21, 2005 7:32 PM CDT

**Update- 7/22 1215am Just hit #26 in 24hrs. Heading down to Children's now- will update later. Hi all. Well, things seem to be getting worse instead of better. So far, 24 seizures today. She had 10 of them between midnight and 4 am and then I gave her diastat. This evening, she was having them every five minutes, so again, we gave diastat. I talked to Dr Frost tonight and he said that if she starts having seizures again, give her diastat one more time. If there are more seizures agter that, then we will be bringing her in and admitting her, so they can load her w/ something besides valium, which doesn't seem to be very effective. She just needs a break. She has been sleeping for most of the afternoon and evening. I am supposed to be going back to work tomorrow evening and thought Kylie would be doing better by this point, not worse. Jody and Danielle and her kids came over for lunch today, which was a nice distraction. Please pray that things will start to turn around soon- we are running out of options. Love Maria
***Update- Kylie just had seizure #25 and her 3rd round of diastat. Anymore seizures tonight and we will be headed down to Children's.

Wednesday, July 20, 2005 6:20 PM CDT

Hi all. We are finally back from the hospital and Kylie is conked out on the couch. First, she had her labs drawn and was such a brave girl! Not even a whimper when the needle went in. We visited a bit on the floor I work on. Kylie then proceeded to have 3 seizures in 15 minutes. After visiting, we went and got hooked up to the EEG. Kylie was so good. She flirted w/ the EEG tech and didn't cry when they stuck all those wires to her head. She had 2 seizures during the EEG itself. We met w/ Dr Frost and Carol after and went over her results. Dr Frost said her EEG actually looks pretty good and does not look like an epileptic reading. She wasn't having any spikes, which are key for seizure activity, just some waves that kind of build up into a seizure. On her previous EEG, she had some waves that looked like they could develop into infantile spasms but does not have any on this EEG, which is great. He thought her seizures on the EEG itself looked pretty mild. That is, until Kylie decided to demonstrate her seizure for him. We were just talking about how I was worried about her getting hurt w/ her seizures because she slams her head down. Then, wham! She slams her head down and had a nice cluster for him. He said, "Well, that seizure is more involved". I think they are a little perplexed at what to do. The depakote should be helping, but it's not. When her labs come back tomorrow, we may be taking her off depakote and starting trileptal. There is a chance the depakote is making her seizures worse. On a good note, we are begining to wean Kylie from the topamax, since it doesn't seem to be helping and Kylie hates that med. My only concern is I'm hoping the topamax isn't the reason she's not having infantile spams and that when we go off of it, she won't start having them. She has never had them and we don't want to start now. We also got a script for a different emergency med. We talked w/ Carol for awhile about our next course of action, if the trileptal doesn't work. My gut is telling me it won't help but we will see. We discussed Kylie having surgery, which freaks us out but at this point, may be her only hope for a seizure free life. On this EEG, the seizures seem to be coming from the left central region, where her motor strip may be located in. If so, surgery may not be an option. Previously, the seizures were coming from the right area. I thought they were from the left frontal, but who knows. It's hard to keep everything straight. We also got an order for a cute soft pink foam helmet for Kylie to wear when playing, since she seems to be dinging her noggin quite a bit. She has had 11 seizures so far today, although I may have missed some in her sleep- I was out cold. I go back to work on Friday, so hoping we get things a little more well controlled by then. Continue to keep Zoey in your prayers, as her seizure count is continuing to grow. Also, continued prayers for Miss Kylie, that she may get some relief from these darn seizures and that she continues to do well delvelopmentally. Can you believe she is 10 months old today? Also, prayers for negative test results for Neil and I and that the new baby will be healthy. Take a few minutes tonight to hug your kids and to let them know how much you love them. I know I will. Hugs and kisses to you and yours- Neil, Maria and Kylie

Tuesday, July 19, 2005 6:37 PM CDT

Another bad day. So far we are up to 17 seizures and I had another night of no sleep, although Neil came home for a bit so I could nap, as I had a major breakdown this morning. =) Anyways, by 8am Kylie already had 10 seizures. Then, I gave her meds and must of hit the gag reflex because I had exorcist worthy vomitting on my hand. She puked like that 6 times, completely drenching both of us- not a great way to start off the morning. After a bath, she had another seizure, then a long nap. I brought her in to the ped this afternoon for an ear and rash check- ears were clear but they said she has a "viral" rash on her face. She had 2 seizures at the doctors office and continued to have them about every 10 minutes. I was so upset and have not been happy w/ the nurse I have been dealing w/ at MN Epilepsy, so I called and made a very pushy request to have Kylie's regular nurse call me back because these seizures were not exceptable! Her regular RN wasn't aware that her felbatol had been increased last week and w/ all of the depakote she had been getting over the past few days, is thinking she might me toxic (the depakote raises the felbatol level and her level was already on the high side). Needless to say, that is where the drunkness is coming in. She is also worried her rash may be an allergy to the depakote. Also, because of her new seizure type, we are going in tomorrow for a lab draw, an EEG, and a visit w/ Dr Frost. We are hoping they catch her new seizure on the EEG so we don't have to go in-patient for a video monitored one. Anyways, she got diastat at 415pm today and so far no additional seizures. Keeping our fingers crossed for a quiet night and so we both can get some sleep. Love to you all- The Gibbons'

Monday, July 18, 2005 10:27 PM CDT

Good evening. We spent the day with a very "drunk" little girl. She good loaded up on meds at 9pm last night and went until 12pm today w/o a seizure. So far we are at around 7 seizures for the day but most came w/in the last hour. I talked to Dr Frost tonight and he had me give her another loading dose of her depakote and not the diastat, to see if the depakote is causing her drunkness. I'm assuming it is, as she usually is ok after the diastat. We also think she may be having drop seizures, where her head just drops down. It's hard to tell though, as she has taught herself new tricks the last few days. Her favorite is to bob her head back up and down, which she thinks is great fun. She has been sleeping most of the day and has been crabby when awake- pray for teeth soon. We got out for a bit today- we met Nicole, Noah and Jane at the mall and walked around for a bit. Kylie lost 2 pacifers in the process, so we cut our trip short due to screaming. I thank God everyday for my husband- without him, I would be in the looney bin. He has no problem taking the screaming baby from me as soon as he gets home. He really is my sanity sometimes. =) We still have not heard back from genetics- please to continue to pray for negative results and for Miss Kylie to get a break from the seizures. Neil's golf tourney is coming along. Please be sure to get your team info/money in asap- we ae trying to get the dinner figured out and need to know how many to plan for. Well, that;s all for now- we are in for a long night of no sleep. Love to you all- The Gibbons'

Sunday, July 17, 2005 9:53 PM CDT

What a weekend. Today Kylie has topped out at 21 seizures and the night is still young. She had diastat at 3:30 am and again tonight at 8pm. She also had a big loading dose of her depakote to 730pm. If she continues to have seizures throughout the night, they are thinking of admitting her to get things under control. I had given her diastat friday at 430 am and she still had 9 more seizures that day. Yesterday, I didn't even count the number. So, we are miserable at the Gibbons' household. Me, because I haven't slept in 3 nights and have been throwing up when awake. Neil, because I made him get up w/ us =), and poor Kylie is completely drugged out right now and looks like she spent one too many hours at the bar. We did get to meet Jonathan and his family tonight, which was a great experience. He is 18 and has TS and is a totally normal kid, even after many long seizures- it was nice to feel hope again. Tonight we had dinner w/ my family, yesterday we watched Kari's softball game, and Friday we went out to dinner w/ friends and went to my cousins' house. Kylie was relatively well behaved, except for her constant whining about her teeth. She is miserable and I feel helpless to help her. We have gotten her to stand from a sitting positio , which is a major improvement, although she can't do it for a real long period of time. I'm going to cut this short- my sister is her for a few hours so I can catch a nap. Keeping our fingers crossed for an uneventful evening. Love Maria, Neil and Kylie

Thursday, July 14, 2005 10:15 PM CDT

**Update 7/15 445 am. Well, happy birthday to me. I have been up most of the night w/ Kylie and just had to load her w/ diastast. She has had many seizures through out the night. Of course, baby #2 opted to make me puke before giving it. I will be calling Frost's office early today and will not wait for a return call until after they close. Hoping Kylie will have a better day. I will update later.
7/14 Grrrr. The seizures are back- 2 yesterday and so far 9 today. They are very quick, 5-10 seconds but we know better- they will soon be lasting longer and will be more involved. I will call Dr Frost's office tomorrow and I guess we will start the depakote. Bummer. I did some research last night on TS and am somewhat discouraged. I do not feel that Kylie will ever get total seizure control. I am not real fond of our OT therapist at Gillette today, who said that we are basically coddling and spoiling Kylie because of her diagnosis- she "needs to learn to do things on her own". Well hellooooooooooo- what do you think we are trying to do? I welcome her to take Kylie for a week and try to get her to do things. Tonight I tried forever to get her to eat- no dice. Suzie can verify this for me. It was not a pretty sight. Big thank you to Suz, Angela, Rach, Lynn and Dan for the awesome b-day gift- you guys rock! Tomorrow Angie is back for Kylie's in-home therapy- hoping Kylie coroperates. Tomorrow night we are going out to dinner w/ the gang to celebrate my b-day and then going to my cousin's house for a bonfire. They will all witness our teething demon. Well, I better go save Neil. Love Maria, Neil and the screamer

Wednesday, July 13, 2005 7:11 PM CDT

Hi all. Our appointment with Dr Frost today went pretty well. He thinks Kylie is actually doing pretty well. She had her first seizure in 5 days today, on the way to our appointment. This seizures was 5 seconds of her goofy smile, no stiffness involved. She weighed in at 23 lbs and charmed the pants off the doctor. For the time being, we are not going to be adding any more medications. He increased her felbatol and agreed to keep her off the lamictal. He does want her to get tubes in her ears and thinks that this will help ward off many of her infections. If she starts to have a lot of seizures again, we will try adding depakote. I am very nervous about this, as this med can cause cognitive slowness. But if it helps keep her seizures under control, I'm all for it. We will have her labs drawn in 2 weeks, to see how her liver and bone marrow look. If we add another med, we need to see Frost in 2-3 months. If not, we don't have to go back for 4-6 months! He agrees with me that she would benefit from PT so tomorrow when we go to Gillette, we will be discussing that w/ them. big prayer requests are needed for Zoey B and her family. They got the definate diagnosis of Rassmussen's Syndrome yesterday and are having a hard time w/ this difficult diagnosis. Her website is www.caringbridge.org/wi/zoeyb if anyone would like to see her story. And now for our big news- Kylie is going to be a big sister in february. This is totally unexpected and of course, we are completely freaked out but excited at the same time. I found out a few weeks ago and at first, was told there was a 95% chance I was going to miscarry. I had an ultrasound and the heartrate was low and the baby didn't look good. Many emotions were running through me and I prayed to God that His will would be done and to help me get through this. The following week, another ultrasound showed the baby had grown, looked good, and the heart rate was good. To be on the safe side, they did another ultrasound this week and things looked even better. I truely believe that this is our sign from God that things will be ok. We still don't have our genetics back so of course, we are very concerned. We are praying to God for a healthy baby but if not, at least we have been there before. We have been so nervous that people will judge us for having another baby and trust me, I even think we are nuts. But I believe everything happens for a reason and this baby truely is a miracle. I have been horribly sick, pretty much all day. That is why my mom has been helping out so much w/ Kylie- I truely appreciate it! Kylie is actually sleeping over there tonight and I am sorry to say it may be a late night- she napped from 315-700pm. =) Hoping the sickness won't last too much longer. My OB wants a homecare nurse to come daily for IV fluids and meds but I am not quite there yet. I am so reluctant to take any meds. But we will see. I go back to work next Friday and need to be feeling better by then. So, there you go. Our lives continue to be constant chaos but we love it. Continued request for negative test results and for 2 healthy babies! Much love- The Gibbons Family

Tuesday, July 12, 2005 10:08 PM CDT

Day 4 of no seizures! This is such a wonderful and much needed break. Kylie has been in a good mood for the most part, besides her teething fits. She actually was on all fours rocking back and forth, until she plowed over and hit her head. Big thank you to Aunt Kari for babysitting today so I could get some much needed rest. We see Dr Frost tomorrow and then I will update with all of our news. No word on the genetics yet- continuing to keep all fingers and toes crossed! Love Maria, Neil and Kylie

Sunday, July 10, 2005 10:49 PM CDT

Hi all. I am happy to say that Kylie went the last 2 days w/o seizures! On Friday, she had 4 clusters of seizures, 2 lasting 1 1/2 minutes and 2 lasting 3 minutes. Carol, from Dr Frost's office called that morning and had me take her off the Lamictal. Kylie was starting to get a rash, which they thought was possibly the start of Stevens Johnson Syndrome. When Carol called, Kylie had 2 clusters of seizures. She told me to give her the diastat, (the emergency rectal valium), if she had any more seizures that day. We ended up giving it to her anfter her second evening cluster, at about 9pm. It knocked her out and she slept until 830 the next morning. I was so paranoid about her breathing (which can be suppressed w/ the med) that I ended up staying awake until 5am watching her. A big thanks to my mom and Sue, who watched her saturday so I could nap! The last time we gave her the diastat, she went 2 days w/o seizures, so I am expecting a seizure tomorrow. I am hoping they won't be clusters though. It was so nice for her little brain to get a break for a few days (and a nice break for my nerves!). Back to Friday- we had a play date w/ Kylie's fellow TS friends, Mary and Jessi, Jessi's sister Grace, and their moms. It was so nice to see everyone. Friday night we just hung out for Neil's b-day. My parents and Neil's family came over for presents and cake. Saturday, he spent the day roofing my Grandma Ueland's garage. Kylie and I went to visit in the afternoon. Today, Neil went golfing and Kylie and I went to Neil's Aunt Jessi's house to swim. It was Kylie's first time in the pool and she loved it, although she did get a little burnt, even through the waterproof sunscreen. She is truely the whitest child I have ever seen. There is no tan in her future. She has been a complete bear lately. She is really teething and seems to be in pain much of the time. We have tried teething rinds, freezing her pacifer, cool rags to chew on baby oral gel and tylenol, w/o relief. Any tips from experienced parents? (And no Grandpa Perlt- we will not be putting bourbon on her gums!) I gues we are making up for early infancy when she was so sweet and quiet. We feel so bad for her because we know she is in pain. Anyhow, this week is booked w/ Dr appointments and therapies. Hope everyone survived the hot weekend. Keep the prayers coming- we are expecting our genetic results sometime this week. Love to you all- Maria, Neil and Kylie
PS New photos in the photo album

Friday, July 8, 2005 0:07 AM CDT

Hi daddy! Happy Birthday! Mommy and I just wanted to tell you how much we love you and that you are the best daddy in the world. Love Kylie

Hi all. Kylie had 3 seizures today but they were long clusters. One was 2 1/2 minutes and the other two were at least 1 1/2 minutes. I called Dr Frost's office today to update. They are concerned that Kylie is getting a rash. It started on her face but today was on her back and tummy. She had her check-up today at the ped and Dr Delahunty thought it was a viral rash, left over from last week when she was sick. We are watching her over night and then Carol is supposed to call in the morning and let us know what we are going to about meds. I'm hoping they figure this out soon- I have a bad feeling that a bad seizure is working it's way up. We are looking forward to our morning playdate w/ Mary and Jessi and their moms. Thank you to my mom for all of her help w/ Kylie this week- I truely could not do it without you! I think we are going to hang low this weekend since it is supposed to be so hot. Maybe a quick swim in the pool. Saturday we are going to visit Great-grandma Ueland, while the boys roof her garage. We need extra prayers for Neil's Aunt Jessi, who was diagnosed w/ breast cancer this week. Jess- we are here for you always and love you so much! You will get through this and will help you with anything you need. We haven't heard about our genetics yet- hopefully within the next week. Keeping all fingers and toes crossed. Have a great weekend everyone! Love Maria, Neil and Kylie

Wednesday, July 6, 2005 10:57 PM CDT

Happy Birthday Baby Noah! Our good friends, Nicole and Jay, finally welcomed their little boy into the world today and we are so happy for them! Kylie thinks her new friend is so cute! Today was a good day- we are still battling the seizures, which seem to be getting worse instead of better, but Kylie is so cute during them. She has been having a lot of cluster seizures, all while awake. But today, she would have one, stop, blow the rasberries at me, have a seziure, and so on. She sure was in a good mood for them. Her Uncle Ben took her to therapy for me today and of course she wouldn't stand for them, but did so right when she got home. Her legs are getting to be much stronger and Angie is going to be so impressed when she comes back for therapy next week. Tomorrow Grandma Karen is going to take Kylie in for her 9 month well baby check at her ped and the poor girl has to get a shot. She is much braver with needles these days, so hopefully it will go well. On Friday, we are having a play/lunch date with two other TS kiddos, Mary and Jessi, and both of their moms. We can't wait to see them for our sanity party! Neil's birthday is on Friday, so I guess we need to get busy thinking of something to do. We see Dr Frost next week, so hopefully he can figure a way to help out with the seizures. Continued thanks for your love and support- we love you all! Love Maria, Neil and Kylie Jo
PS A TS mom made a new TS awareness video- here is the link. Make sure to enlarge the video screen for the full effect when it is playing.
http://www.angelfire.com/magic2/tsc/

Tuesday, July 5, 2005 0:34 AM CDT

Happy belated 4th of July. Kylie missed the fireworks this year, as she is finally going to bed around 8:30 or 9:00 and is staying asleep for the night, although she is continuing to having seizures in her sleep. Needless to say, I don't really sleep at night. I'm so afraid she is going to have "the big one" and I am going to miss it, until it's too late. She is hooked up to machine at night that alarms if her oxygen levels or heart rate gets too low, so that is somewhat reassuring. Her seizures are continuing to cluster, meaning she has one, stops for a few seconds, then it starts again, and so on. We have not yet had to use the diastat (not since April), so we are hoping to keep it that way. I have stopped counting how many seizures she is having a day- probably averaging 6-10. She has had a coulple over the weekend that she was awake for. She is still not yet crawing but we are able to get her to bear weight on her legs when we stand her up, which is a huge improvement. We have been working on waving bye-bye and clapping, which she has modified into slapping her tummy. We are not sure which one she is meaning to do. =) She is saying mama frequently now, alough it is usually associated with her screaming. Still no teeth but she is teething like a little monster. We are hoping she doen't inherit her Uncle Andy's first set of teeth- the dracula fangs. Hopefully she will have some teeth in time for her birthday. I am thinking of taking a little time off of work- I am emotionally and physically exhausted. I am also going through some emotionally trying medical stuff, which I won't get into now. Then, last week, I fell down the stairs, (thanks to our lovely dogs) and have been having some trouble w/ my hip. I will probably see the doctor sometime this week. On top of everthing else, our genetic testing is due back sometime this week or next. I am worried sick about it- the results will, in one way or another, be life altering for us- a lifetime of happiness or a lifetime of pain. We are hoping for the former. =) Our family desperately needs your continued prayers right now- we thank you for all of the prayers that have already been said and for your continued love and support. We are praying for a healthy girl this time next year. We are still having to occasionally neb Kylie but her respitory infection has seemed to clear. Wed we increase her Lamictal, quite a bit- if we don't see a decrease in seizures over the next 2 weeks, it's unlikely this med will work. Kylie has therapy at Gillette on wed, which I am hoping I am up to taking her to. Thurs, she has a ped appt and will be getting shots- hoping for no reaction! Friday is Neil's 28th (wow!) =) birthday, so hopefully we can find a way to celebrate. Even though he doesn't talk about it much, I can see the stess and worry on his face about his baby girl. He is a fabulous daddy- I never worry when I leave Kylie w/ him, (except maybe overnight) =). Her face absolutely lights up whenever he comes in the room. If you ask her "where's daddy", she smiles and turns to him. (She also does it for "where's kitty?", but has a blank look on her face for "Where's mommy?") Neil has also been working extra hard at getting sponsers and teams set up for the golf tourney, along w/ a few friends that are helping. A huge thanks to Kelly Gibbons and his family, who have really been helping out w/ the tourney- Neil could never have had done this on his own! You guys are great! Well, I need to go check on the little miss- the next few weeks are going to both emotionally trying and exhausting- praying for little miracles. Love to you all- Maria, Neil and Kylie Jo PS I will be updating her pictures this week.

Saturday, July 2, 2005 0:15 AM CDT

I have not found the strength to update in the last few days. We are going through a lot of emotions right now and with Kylie continuing to have many seizures a day, I really don't have the heart to be upbeat. Her seizures are now regularly clustering, lasting anywhere from 20-45 seconds. They are still all happening in her sleep or as she is about to fall asleep. We have an appointment w/ Dr Frost on the 13th but I fail to see that he can help us. We are going on 4 months of almost daily, multiple seizures. All of the medications they have tried are failing and the options we have left are likely to dramtically change her personality or cognitive abilities. There really is no winning situation. I am sorry if I sound depressing but it's just so hard to be upbeat all the time. I need a sign from God that he is listening to my prayers because right now, it seems as if my world is falling apart. On a lighter note, I did get Kylie to stand for a bit yesterday. She still is making progress and I guess we need to appreciate that. I want to thank you all for continuing to follow Kylie's journel- without all of you, I don't know where we would be. Have a happy and safe weekend. Love Maria, Neil and Kylie Jo

Wednesday, June 29, 2005 2:26 PM CDT

We are waiting to hear back from Dr Frost's office about what they are going to do about Kylie's seizures. She ended up having 12 seizures yesterday- so far 5 today. They are starting to cluster a bit too- one right on top of another but still are only lasting 10-20 seconds. She also has some sort of upper respitory infection going on, so the additional seizures may be a result of that. We are nebbing her every 4 hours, hoping to clear up her airway. Now we are really confined to the house! You would never know this kiddo was sick though- happy smiles for everyone, blowing rasberries and she is babbling again! I think she really didn't feel well when she was sort of silent. Whenever she gets mad and sassy, she yells, "Maaaaa". Hoping this isn't a sigh of her attitude to come. =) We are working on waving. Today she was sitting in her highchair, watching me. I started waving at her and she started waving palm down, across her tray. A little backwards, but hopefully she is getting the right idea. I will update when we hear back from Frost's office. Love Maria

Tuesday, June 28, 2005 5:47 PM CDT

What a night. I am completely wiped out- will this kid ever be healthy? I was up until 4am, (I worked nights all weekend and my sleep schedule was all messed up) and as soon as My head hit the pillow, Kylie started coughing- and coughing, and coughing. Then she started choking on all of the mucus in her throat and couldn't breathe- slightly scarey, to say the least. I got a bunch of the junk cleared out and nebbed her. I got her to go back to sleep, but then the seizures started. She had 4 by 8:30am. She ended up having 3 more this afternoon. Who knows if she will have anymore today. Still, they are all happening during her sleep, lasting 10-20 seconds. It's hard to tell if she is having more because she's sick, as she hasn't been healthy in what seems like a long time. We just keep praying the doctors will figure out how to help her. The Lamictal still is probably not at a therapeutic level yet. Hopefully in a few weeks it will be. Only 2-3 weeks until our genetic results- we need prayers more than ever that they will turn out ok. On a happy note, Andy will be home for good this weekend! We are so proud of all the hard work he has put in over the last year or so- hopefully he will get to stay home and get to know Kylie before he gets deployed anywhere. Kylie and I had lunch w/ Nicole and the still infamous Baby Noah, who has yet to make his appearence. Kylie can't wait to meet her playmate! Neil is out work hard right now, asking area vendors for help to support his golf tourney. If interested in golfing, please make sure to let us know as soon as possible so we can figure out how many people to expect. This tournament is to help benefit TS research. I better go track down my baby- she is hanging out next door. Have a great night! Love Maria, Neil and Kylie Jo *Update: 8pm: Kylie just had seizure #9 =(

Monday, June 27, 2005 3:24 AM CDT

Good morning. Well, I have been working all weekend so I'm not quite sure what Kylie has been up. She is continuing to have 4-5 seizures a day. She has also seemed to catch a cold- very runny nose, icky cough. She just can't seem to catch a break. I have a feeling she may be getting allergies, hopefully not to our small farm of animals. Her fever finally broke on saturday. She spent the weekend hanging out w/ daddy, so I'm sure she will need a bath when I get home. Kylie is going to spend the day at her grandma's house so I can get some sleep in the morning. I am off most of the week, which is full of appointments and therapies. Have a good week all and I will update later. Love Maria, Neil and Kylie Jo

Friday, June 24, 2005 2:13 PM CDT

Hi all. Kylie's fever ended up coming back yesterday, over 102. Still not to bad for a baby, but the explosive diarrhea that went w/ it- not so fun. She has been completly miserable the last few days, especially at night. I can't wait until her teeth break through because she is in agony. Today I am not feeling so hot, so we are hanging low. Dr Frost's office sent me Kylie's lab from last week and they look great. Her plateletes are even at the high end of normal, so that is fabulous. She had one seizure yesterday and so far two seizures today, about 15 min apart, will I was rocking her to sleep. She has been napping all afternoon, so hopefully she will wake up in a good mood. On a good note, she ate an entire jar of applesauce in a 5 minute sitting. She even went after the spoon like a little bird! Hopefully this means her eating issues are turning around. Well, I'm going to go nap. Hope you all have a great weekend! Love Maria, Neil and Kylie Jo

Thursday, June 23, 2005 1:26 AM CDT

What a day! Miss Kylie is sick....again. She woke up and seemed fine. We went to Gillette for therapy this morning and she fell alseep on the way there, which she never does. We saw a different therapist this morning and Kylie would barely sit up for her- which she has been doing great at for some time- and only wanted to be cuddled in my arms. As soon as we pulled out of the ramp, she was already sleeping. We stopped off at my mom's and took her temp- 101', which isn't too bad for a baby but Kylie is normally around 97.0. She also has been having some blood in her stools. She was on an antibiotic for her ears that can turn the stool reddish- which it did- but this was definate blood. We saw the ped, who felt her temp was higher than what the ear thermometer was reading. They drew a WBC, which was actually very low, indicative of a viral illness and not an infection. Her ears were clear for a change so they pulled her of the antibiotic, which she still had 5 more days on. If I still see any blood tomorrow or friday, back to the doctor we go for further testing. Sarah from Dr Frost's office called today. We are staying the same on the meds now. When she is feeling better, we will continue to wean her from the topamax. I can't wait. That med is the source of her eating issues. At therapy today, this therapist agreed w/ my concerns about Kylie not using her legs like she should. She was going to talk to PT and let us know the plan. She kicks her legs and plays w/ her feet but it is like pulling teeth to get her to stand on her legs. They did recommend taking her to a pool. I will be looking for pools in our area this week. We have been dealing w/ a teething, crabby baby in the evenings. She is inconsolable! I feel so bad for Neil that I am working most evenings. He is really not getting much sleep. Still, no teeth have popped through yet. Hopefully soon. Tomorrow I am off and plan on keeping Kylie cool in the predicted 100' heat. We may visit Nicole and bring DQ and try and coax little Noah to join us. I forgot to mention yesterday- the geneticist told us that Kylie looks great- if she wasn't having seizures, you wouldn't know a thing was wrong w/ her. She's a very social and happy baby. My new concern is that she doesn't seem to be babbling as much as she was before. She is either sucking on her fingers, blowing rasberries or whining. It's hard to tell if this is a stage as she learns new things, or if the tubor is in an area that will effect her speech. Hopefully not. We did talk about getting tubes in her ears today. The ped said she is very leery about putting her under while her seizures are not controlled but since the ear infections seem to make her seizures worse, it is definately worth considering. We will reasses in the fall- if she continues to have infections over the summer, we will be doing tubes right around her b-day. Can you believe she will be one in Sept? It seems like just yesterday the doctor laid her on my tummy and my whole world changed in an instant. Well, that's all for now. Love to you all- Maria, Neil and Kylie Jo

Tuesday, June 21, 2005 4:51 PM CDT

Hi all. Well, we are back form our genetics appointment and overall, things went well. Here is what Kylie's report says:
"This patient was found to be heterozygous for the R786X mutation in exon 18 of the TSC1 gene. No mutations were detected in the remaining 20 exons of TSC1 or in coding exons of TSC2. This mutation has been previously been reported and is consistant with a diagnosis of TSC. The reliability of this result is approx 97%." Got it all? Basically she has TSC1, which we knew. They drew blood from Neil and I today to check for that same mutation. If that mutation does not show up, then Neil and I would not have other children w/ TS. If it shows that one of us does have the same mutation, then the next step would be for our parents to get tested to see if they have it. If so, then our siblings would follow. Also, if one of us has the mutation, we would go through all of the same testing that Kylie had- MRI, EEG, renal ultrasound, chest x-ray (for me), eye exam, cardiac echo, etc. Our insurance company is going to love us! Hopefully we won't need all of that testing. Our results should be back in 3-4 weeks, probably right in time for my birthday. Praying I get a nice gift of no TS! Kylie is 22lb, 3oz and 30 inches long. The geneticist called her fat! She said she weighs what a 15mo should weigh. I said, "If you think she's fat now, you should've seen her 3 months ago. She really hasn't gained any weight in three months and is 3 inches taller." Kylie gave the lady a dirty look and started crying, so we think she was offended. =) They used a Woods lamp (like a black light) to check Kylie's skin for the hyperpigmented macules (sp?). We knew she has around 6 or so but today they found over 10. These spots don't harm her in any way and they are only on her back/stomach and 2 on her upper thigh. They are tiny little white patches of skin. We are going to be making an appointment w/ the Children's feeding clinic to work on Kylie's oral eversion issues. I know her weight is more than fine but she is not taking in hardly any solids and is over compensating w/ formula. We have about three months of formula left, so I would like to be on tract by her b-day. Tomorrow we have OT at Gillette and hopefully will be working on ways to strengthen her legs. Miss Kylie turned 9 months old yesterday. The time really is flying by!We are witing to hear back from Dr Frost's office re her increased seizures. She had 4 yesterday and so far 2 today, which is much better but I want to make sure it is ok to increase the lamictal tomorrow, in case that is what is causing her seizures. Well, that's all for now. Please keep the prayers coming and enjoy the beautiful day!
Love Maria, Neil and Miss Kylie Jo

Sunday, June 19, 2005 11:57 PM CDT

Hi all. Happy Father's Day! We had a very nice day today. Kylie only had three seizures, (but had 5 yesterday), and it was a beautiful day! We went out to breakfast w/ Kylie's uncles this morning, then went house hunting w/ her Uncle Andy during the afternoon. When we got home, she snuggled on the couch w/ her daddy and napped, while her mommy did yard work. We had a BBQ tonight with my family- it was so nice to have us all in the same state for once and to catch up. It also helped to boost my mood a bit. I have been feeling a little bit sorry for my self lately, (and of course for Kylie) and have not been in the greatest mood. It just gets so frustrating watching her have so many seizures- and I have this gut feeling something else is going on with her. It is bugging me but I haven't quite figured it out yet. Yesterday, we made a trip to the ped for an ear check. Her left ear has "tons of fluid" in it but wasn't quite infected yet. The ped said it most likely would be by today, so we were given an antibiotic. All of her infections have been in her left ear. The canal in the ear is super tiny and doesn't drain like it should. We have a 9mo check-up July 7, so we are going to discuss getting tubes. Hopefully that will help decrease the infections and help to control the seizures better. Tuesday is the day we have been waiting for and stressing out about- we meet w/ the geneticist and Neil and I will have our blood drawn, to see if either of us have TS. We probably won't get the results back for a few months, so it will be a long summer of anxious waiting. We will also be seeing Dr Frost in July, to discuss what our next course of action in seizure control will be. I'm nervous to even think about it. Wednesday we will be increasing the Lamictal, which will happen every two weeks for the next four. Kylie doesn't seem to be getting the dreaded rash but may be having an increase of seizures from the Lamictal- rare, but it does happen. Neil's golf tourney is coming along- be sure to contact us if you are planning to play or would like to sponsor a hole or donate prizes. We are hoping to raise a lot of money for TS research. Whether or not they find a cure in Kylie's lifetime, I do not want another family to go through what we are experiencing. Continued prayer requests for our genetic testing to be negative and of course, for seizure relief for Kylie. Lord, this little girl's brain needs a break! Please help her heal.
Love to you all- Maria, Neil and Kylie

Friday, June 17, 2005 11:07 PM CDT

Not much to say except .....crap. She ended w/ 8 seizures yesterday and so far 4-5 today. They are all sort of blending together. The worst part is now they just seem to come anytime when she's sleeping, not just within the first 10 minutes of sleep. I am so worrried she is going to have a big one in her sleep and I will not wake up for it. Anyways, today we had a great playdate at Mary's house. Eileen- you have been such a great pillar of support for me and I want to thank you from the bottom of my heart. You actually do know what I am going through and even though you are dealing w/ Mary's issues, you have helped me to see Kylie's in a clearer light. Tonight we went to my cousin Lori's grad party and then a big trip to Target. We got a little blow-up pool, so tomorrow Kylie and I are going to be bathing beauties. We also have 6 dogs at our house right now, so the true meaning of "The Gibbons' Farm" will be played out this weekend. I may take Kylie in to get her ears checked in the morning because the last few times when we have a bunch of seizures, she has hsd an ear infection. Angie from OT did a great job w/ Miss Kylie again today. We are on our own now for the next 3 weeks, so we will be working on new things to show Angie. Tuesday is our big genetics day- continued prayers for good results. Have a beautiful weekend everyone! Love Maria, Neil and Kylie Jo

Thursday, June 16, 2005 11:55 PM CDT

And the seizures continue. Today we hit 7. She seems to be having more on this new med, rather than less. I know it will take a long time for this med to be therapeutic but rarely, it can cause an increase in seizures. Hoping that is not the case. Aside from the many seizures, Kylie and I had a good day. We went down to Grand Ave for lunch w/ Nicole, (no appearance from Baby Noah, although a baby "psychic" we met on the street swears Noah is a girl. Hmmmmmm.) Later we met Danielle and the kids for ice cream. Kylie and I then went visitng at my work and then had her dreaded lab draws done. Miss Kylie was a star! Not a single tear was shed. She was all smiles through the whole ordeal and was told that she was the best patient of the day. Either the tech did a great job or the poor kiddo is getting used to needles. We won't hear back on her labs unless there is a problem, although I'm sure I will be harassing the doctor's office next week for the results. I am srating to have major guilt issues about working. Kylie does so well when there are a string of days I have off. There is more time for me to work on her therapy w/ her and she seems to progress better. If only there were more hours in the day. Tomorrow Angie will be here for therapy and then we are making a trip to visit our fellow TS friend Mary and her mom. Kylie is amazed by other kids so this should be fun. Neil will be gone all weekend so we are planning on some girl fun. Maybe a trip to the beach? Andy will be home saturday night so we are hoping to hook up w/ him sunday. Tonight as I go to bed, I am asking God to hear my prayers. Lord, please bless my sweet girl and keep her from pain and suffering. Please help us to find a way to stop her seizures and to let her little brain heal. I will give anything for You to answer my prayers. Love to you all- Maria, Neil and Kylie

Thursday, June 16, 2005 0:50 AM CDT

Hi all. I guess Miss Kylie ended Tuesday w/ 5 seizures but we didn't notice any on wednesday. We ended up missing therapy because the alarm didn't get set. We go in the morning for her labs and then are going to spend the day w/ Nicole and try to bribe baby Noah to make an appearance. Kylie can't wait to meet her new friend. Neil's weekend is full of golf, while mine will be spent taking care of 6 dogs. Things could literately get hairy =). My paremts will be out of town, so we are taking their pets in. I am off until monday, so we will be spending a lot of time getting the house in order. Prayers for my brother Andy- I think, if he can get home in time, will be testing to join the St Paul Police Dept! We are hoping he will do well, although he succeeds are everything he does, so we are hoping he will be Officer Ueland this fall. Also, big prayers are needed for Zoey B. The biopsy of her brain tissue came back and so far, it is not good news. She continues to have daily seizures and my heart is breaking for her family. A few prayers our way too, for our genetic testing on Tues. We won't get our results back for a few months, I think, so I'm sure I will be a mess until we know. I have learned to trust my gut instinct through all of this and my gut is telling me we are not going to get the results we are hoping for. Let's hope that for once I am wrong! Good results would lift 50% of the stress off my shoulders. Well, I am turning in for the night. Love to you all- Maria, Neil and Kylie

Tuesday, June 14, 2005 11:39 AM CDT

Well, today has been a bummer. Kylie woke up at 9:30 this morning and by that point, had already had three seizures. Those were the ones I woke up for- who knows how many I missed. This is so frustrating. I think wednesday night I might try and stay up the whole night to watch and see how many seizures she really has. We only saw her have two yesterday. I will update later tonight when I get home from work. -Maria
*update- nothing new. She had 1 more seizure while I was at work tonight. We got our favorite pictures back tonight so I will post it in the photo album. We have therapy at Gillette in the morning. That's all for now! Oh, one request- I am making Kylie a scrapbook and was wondering if we could get some letters from our faithful family and friends, addressed to Kylie, that I can put in her book. You can post them in the guestbook or send them to our home. 1784 Pascal St Falcon Heights MN 55113
Thanks!

Monday, June 13, 2005 0:03 AM CDT

The weekend went way to quick. As you can see, we have updated the photoalbum (finally!) We had a great time on saturday getting Kylie's pictures taken. We have not yet gotten our favorite picture of her yet, (they had to edit it), but we will post it sometime this week. Kylie had 3 seizures yesterday and 2 today. Still, they are pretty quick. Yesterday we headed out to MOA- Kylie had a great time watching all of the people. One slight mishap- during her pictures, they had her laying naked on the American flag, (I know how it sounds but trust me, it's cute and you can't see anything you shouldn't!), and the little miss decided to pee all over the flag and the backdrop. Opps! Luckily, they were very nice about it. We had a BBQ last night w/ Uncle Ben and Grandma Karen. Today, Kylie and I walked to Kari's game (a long haul, combined w/ a seizure=( We told Kari that because we walked so far, she had to get a homerun. And she did! Way to go Kari! We are still struggling to get Kylie to eat solid food- today, icecream won't even work. This is really starting to concern me- she's getting to the age where she should be eating some table food and we can't even get her to eat baby food from the jar. This week, we have to get labs drawn and we have OT on wed and I can't remember if we have it friday or not. Also on friday, we have a playdate w/ our friend Mary, another TS kiddo. Kylie will be 9 months next monday and we see the geneticist next tuesday. Continued prayers for happy results. That's all for now- Love Maria, Neil, and Kylie

Saturday, June 11, 2005 2:33 AM CDT

I know, this is a late update but I just got home from work a little while ago. I would say seizure control has been better lately but the I go and jinx it. One seizure thursday and one seizure friday. Thursday we started the Lamictal but it will be awhile before we would see results. Friday Kylie had OT w/ Angie and we worked on drinking out of a sippie cup- didn't go so hot. We also tried the oral stimulator brush in her mouth- also didn't go so hot, (she freaked out). But we made a little progress with strengthening the upper body. She really is doing great but I still get sad each time a kiddo her age passes her by on something. I know, she will do it in her own time and I am happy for all the accomplishments she has made but I hate how hard she has to work to get there. I guess we are preparing her for college. =) I dropped her off at McDonalds PlayLand to hang out w/ Grandma & the daycare kids after OT. She really does need the interaction with the other kids. They just totally amaze her. When fall comes around, I think Kylie is going to go to daycare one morning a week, just for the interaction, as long as everyone is healthy. I should get to bed. We are going to MOA this morning to get Kylie's pictures taken. We will post them later. Love Maria (and Neil & Kylie)

Thursday, June 9, 2005 11:11 PM CDT

Good evening. So much for my last 4 days off- we have been so busy! Let's see- yesterday Kylie had OT at Gillette. The therapist said she is doing great and has been making a lot of progress. She's doing "normal 8 mo old things"! I think that is in do part to Angie, our home OT gal. I kind of feel like Gillette may be a waste of time, but if the kiddo is making progress, I don't want to change anything right now. After therapy, we ran errands and then had lunch w/ Grandpa Tom. Last night, we went to my friend Nicole's, to help get ready for baby Noah, who will be arriving any time these next few weeks. We are so excited! Today, we started Kylie on Lamictal. She actually took it pretty well. She took a 3 1/2 hr morning nap and quite a few afternoon naps, so I am again concerned she may be getting another ear infection- I forsee tubes in our future. The us girls walked to the grochery store, which Kylie loved. This evening, we went to a bridal shower for a girl I worked w/. Kylie was very whiney, which she seems to show for the girls whenever they see her (I swear- she is not always like that!) Oh, my big news- our softball team won tonight for the first time in 2 years and it was w/o the Tischler girls!=) We are pretty bad so it was actully exciting. Kylie has therapy in the morning then I work in the evening. On sat, we are heading to the Mall of America to get Kylie's pictures taken. That's all for now. We will be update pictures this weekend. Love Maria, Neil and Kylie Jo

Tuesday, June 7, 2005 5:07 PM CDT

Holy hotness! Summer is really here and we were melting today. Kylie had a great day yesterday- no seizures. Thanks to Uncle Ben and Laura for babysitting so I could sleep! Last night we went to Lakeville for a get-together w/ my college buddies. Baby Lilianna was there and Kylie had a great time playing with her. She was so funny- big belly laughs, lots of giggling, Kylie looked like the "baby mauler" though- she kept trying to grab Lili. It was so cute! Today we slept in. Auntie Kari and Laura gave Miss Kylie a bath and then she decided to have a seizure for them, lasting 40 seconds. She hasn't had one that lasted that long since early April, so we are hoping they aren't going to creep back. Dr Frost's office called and we are starting Kylie on Lamictal. This drug takes a long time to build up in the system and they start of at a low dose because it can cause a rash, which can develop into something called "Stevens-Johnson Syndrome", which is defined as "a systemic skin disease, toxic epidermal necrolysis, that produces fevers and lesions of the ora, conjunctival, and vaginal mucous membranes, wide spread and severe- skin loss may lead to dehydration, infection or death." Whew. The picture in my medical book is NOT a pretty picture. On the good side, it doesn't damage the organs and won't effect her cognitive development like the other meds that were our options. Only problem is that this is yet another pill form but is dissolvable w/ flavor. She is doing better w/ the topamax. We are crushing it and adding it to apple juice, then squirting it in her mouth w/ a syringe. She still doen't like it but at least it's not associated w/ food. She ate an entire jar of fruit this morning! Big progress. Tomorrow we have PT. Not much else is going on. We need lots of prayers that this med will be the one that works for her. Also continued prayers for negative genetic result for Neil and I. We are going to try and update w/ pictures from the wedding, so be sure to check out the new pics soon. Love you all! Love Maria, Neil and Kylie Jo

Monday, June 6, 2005 2:01 PM CDT

Hi all. Not much going on today. So far no seizures. Saturday she had 5, yesterday 3. Sarah from Dr Frost's office called earlier and now we are waiting to hear back from her. Kylie spent the weekend hanging out w/ her daddy, Grandma Karen, Auntie Kari, and Uncle Ben and Laura. They all did a great job taking care of her while her mom worked. I am now off until Friday, so we are going to have lots of girl time. Well, I'll update when I hear back from Frost's office about the med changes. -Maria

Saturday, June 4, 2005 0:26 AM CDT

Well, we almost went another entire day w/o a seizure, but of course, she had one as soon as she fell asleep tonight. Bummer. We did hear back from Dr. Frost's office today. Apparently there was a death in the family and Dr Frost won't be in until next week. I am supposed to call his nurse next week and discuss what our med changes will be. I am praying they get her completely off Topamax. She has a huge oral eversion towards food right now because of it. I feel so bad for her. The med tastes horrible and now, she is refusing all food, except her bottles. Meal time has become a constant battle. Angie from OT came today and worked Miss Kylie's butt off. She actually said that Kylie is doing some age-appropriate play. Way to go girl! She has seemed to make big strides the past few weeks. I can't believe she is already 8 1/2 mo old. We need everyone's continued prayers for our genetic testing. We are praying so hard that Neil and I do not have TS. The results are going to have a draumatic effect on the rest of our lives. Right now, the odds are not in our favor. I have tried to be strong through all of this but will be devastated if we don't get good news. So please- pray! Hope you all have a great weekend. Love Maria, Neil and Kylie Jo

Thursday, June 2, 2005 11:00 PM CDT

A day of no seizures! Yeah! We never heard back from Dr Frost's office so I'm not sure if the meds are still going to get changed. She had two seizures yesterday but has been in such a great mood the last few days. I'm thinking the ear infection really threw her for a loop. Today we had lunch w/ Jody and just ran errands. Kylie watched both her mom and then her dad, play softball tonight. It was such a beautiful evening. It really feels like summer is here! Kylie is doing better pivoting on her tummy and was actually scooting backwards on her tummy today. Sue, our neighbor, actually got Kylie to bear some weight on her legs too. She just seems to be making great progress the last few weeks. Tomorrow is OT w/ Angie. Hoping Miss Kylie will cooperate and show her new tricks off. Big thank you to Kelly Gibbons and Brian Walters, both of whom are helping Neil get his golf tourney figured out. We really appreciate it! I work all weekend, 12 hr night shifts =(, so I will try to update when I can. Have a great weekend!
Love Maria, Neil and Kylie Jo

Wednesday, June 1, 2005 12:21 AM CDT

Hi all. We just got home from our morning appointments. First we had therapy at Gillette's and they were very suprised, and pleased, at how well she is doing. She is well passed where she was at when she was assessed about a month ago. Way to go kiddo. They are going to be working on her eating issues, as she has an oral eversion to food because she thinks she is getting medicine every time you pull the food out. As soon as she sees the spoon, she tenses up, clamps her mouth shut, and starts whining. I wish I had that problem w/ food! We have home therapy on Fri. w/ Angie, so we will see what she thinks about Kylie's progress. We then went to see our ped, Dr Delahunty, for an ear recheck. She gave us the all clear, so we are hoping for no more infections this summer, (can you believe it's already summer?!) Carol, from Dr Frost's office left a message while we were gone that Kylie's felbatol level was at a therapeutic level, so she should not be having seizures, yet she still is. They are going to be changing her meds again. I'm so nervous, as this will be the 4th med the will try and if there is no seizure control after 4, she will be considered to have seizures that are "medically unable to control". Not to meantion, all of the side effects we have to watch for. We have been pretty lucky so far by not having had any serious side effects. I have a gut feeling these meds are not going to work and then we will have to have her evaluated for surgery to have her tubor out. The risks of surgery freak me out and it is not even a guarentee that the seizures will stop. Two kiddos that we know have had the surgery and although the seizures stopped briefly, they came back. Kylie had 2 seizures Mon, 4 yesterday and so far 1 today. Those are the ones we are actually seeing. Who knows if she is having more. Well, I'll update more when I hear back from Carol. Love Maria, Neil and Kylie

Monday, May 30, 2005 9:27 PM CDT

Opps- tomorrow I won't be able to update, not today. Happy Memorial Day! Kylie had a good day. Only one quick seizure so far and she had none yesterday, only one sat. She was in a much better mood too and was way less sleepy. We spent the day cleaning and working on Kylie's garden. The morning was a frensy of getting the newlyweds packed up and to the airport on time- long story. Andy definately has inherited the Ueland time-management skills. We had a BBQ at my parents- Kylie visited w/ her great-grandparents and great-great auntie. Nothing new on the agenda. We have to follow-up w/ her ped tomorrow and we have therapy on wed and fri. More later! Love Maria, Neil and Kylie

Sunday, May 29, 2005 9:20 PM CDT

What a beautiful day...........to spend at Children's ER. Yes, Miss Kylie is up to her old tricks, although not seizure related this time. Kylie has been very crabby and irritable over the last week. She has also been very sleepy. We have been having to wake her up the last few mornings, when normally she is up at the crack of dawn. Even at the wedding reception, she slept through a good portion of it and it was very loud there. Anyhow, today at 11am, we finally had to wake her up for the day. She was back to sleep by 1:30pm and slept mostly until 8pm, (she woke up a few times for lab draws and her IV). She has another ear infection but they gave her IV antibiotics and IV fluids because she has a little dehydrated. On a good note, her labs all looked better than they did a few weeks ago. We won't get her med levels back until Tuesday. I hope they are ok because we have been doing better seizure wise. Only 1 quick one yesterday and so far none today. =) We did have a great weekend. Welcome to the family, Andrea! Andy and Andrea finally got married yesterday. It was a beautiful ceremony. Kylie was very well behaved in church, which was big suprise, considering how crabby she has been. She had a great time hanging out with her great-great aunties, Ginger, Jo and Mahelea. Today we went to Andrea's parents for gift opening. Tomorrow we plan to just hang low, maybe work on Kylie's garden. I won't be able to update tomorrow, as the website will be going through system updates. I hope everyone has a great memorial day! Love Maria, Neil and Kylie

Friday, May 27, 2005 4:13 PM CDT

And the seizures continue. Kylie had 3 yesterday but so far 4 today. We increased the felbatol yesterday, so we are hoping to see an improvement this weekend. Last night, Kylie and mom went to Grandma Perlt's for dinner and to visit w/ all the out-of-town relatives. It was so good to see you all! Miss Kylie was up until 1am and then we had to get up early to meet Andy and my parents for breakfast. We went to Keys, were we visited w/ some of the ladies who are going to be working the Keys golf tourney in Aug. Kylie then spent the day w/ her grandparents and I went for a much needed day at the Aveda Spa, (thank you so much to Andy and Andrea- what an awesome christmas gift!) I feel refreshed! Tonight we have the rehersal and groom's dinner. Tomorrow is the big day! Praying for no seizures and no rain! Have a good weekend! Love The Gibbons'

Thursday, May 26, 2005 11:30 AM CDT

The never ending waiting game. The genetics people called yesterday and left a message. I called this morning and was informed that the person who called me doesn't work on Thursdays. I told them she said she would be in this morning and then not back until next wed and that we would like our results. That was at 8am. I just called a few minutes ago and said that we have been waiting for our results since feb and that we are not going to wait until next wed to get them, so could they PLEASE FIND SOMEONE TO GIVE THEM TO US! Two minutes later, they called back saying, why yes, that person is working today, but at a different location and she will call you back today. I will be at their office at 8am tomorrow if she does not call back. I am also waiting to hear back from Dr Frost's office. Kylie again had 6 seizures yesterday and so far 2 today, both of which were when she was sleeping last night. Those are the 2 we woke up for, who knows if she had any more that we missed. She is also doing more shaking/eye deviation. We had OT at Gillette this morning. They said Kylie has improved a lot since her evaluation. They gave me the results of the Peabody Assessment, which scored her low in two areas, mainly grasping (put her in the 5at a 3mo level) and visual integration (?), in the 9t a 4mo level. She does do a lot of other age appropriate things, so who knows. Maybe this is a part of TS, maybe this is how she was meant to be.

F!*! I just got off the phone w/ the geneticist. Kylie has a mutation on the TS1 gene, confirming her diagnosis of Tuberous Sclerosis, (which we knew), but because it is on the TS1 gene, it is more likely to not effect Kylie as severely as it would on the TS2 gene but is more likely to be genetic. So I guess this is good news for Kylie but bad news for the rest of us. I'm just so sad- this is my entire life that is going to be affected. I would be sad if I have it, but I will be devastated if the rest of our family has it. That's all for now. -Maria **Update- Just spoke w/ Carol from Dr Frost's office- we are increasing the felbatol quite a bit, staying the same on the topamax. Hopefully will see decrease in seizures over the weekend. She agrees about the TS1 being less severe. Platelete count ok. More later.

Wednesday, May 25, 2005 1:55 PM CDT

**Update- Kylie's genetic results are back. There was a message on the machine tonight. I am freaking out but will update tomorrow after OT.
Kylie is continuing to have seizures. She had 6 yesterday and so far 3 today. We may be making some more med adjustments. Through all of this, she continues to be happy and talkative. Although she probably won't say her first real word for sometime, she does say mama and hi, although not with meaning. She continues to gey stronger each day. Today she pushed herself up fully from her back to a sitting position while laying on the couch, something she has been working at for so long. Some days she eats better than others- today is not such a good one. We have OT at Gillette tomorrow and this is something they will be working on. We are praying for a low seizure weekend, as Andy (my brother) is getting married and we will be very busy. These are the days I long for a "normal" life. Well, not a whole lot more going on. I will update later.
-Maria

Tuesday, May 24, 2005 1:10 AM CDT

Hi all. I'm working a double and taking a quick break. Not such a hot day for Miss Kylie. She had 5 seizures today, apparently to make up for yesterday. She has also been sleeping a ton, so I'm wondering if she is coming down w/ something. She slept until 1030am this am, then was back down by 1145am for a 2hr nap. She took many smaller naps this afternoon/pm. Grandma Karen is sleeping over tonight so Neil can go to work early. We talked to Carol from Dr Frost's office today. Kylie's felbatol level is not at a therapeutic range yet, hence the seizures. Her platelets are a little low, at 6.5, (normal for her would be 7-10), so I am extremely nervous. Dr Frost is not concerned at this point. I need to dig up her labs from Feb to see what her baseline was. I am praying to God that we made the right decision puting her on such a strong med. Also praying for a healthy week, as this is a busy one. Wed eve we are helping Andrea move, thurs am we have pt at Gillette and in the eve, we are going to see all of the out-of-town relatives, here for Andy's wedding. Friday my mom is watching Kylie so I can get a much needed beauty day, thanks to Andy's Christmas gift. We have the wedding rehersal and dinner that night, then the wedding on sat. Well, back to work I go. More later. Love Maria, Neil and Kylie Jo

Sunday, May 22, 2005 9:07 PM CDT

What a weekend! Today we did the TS walk and am proud to say that Kylie's team raised the most money! Thank you so much to everyone who raised money, donated money, and especially to those of you who came and did the walk. It meant so much to us to see all of the people who love us and who love Kylie. You have all truely touched my heart. You have made us realize that we are not alone in this fight. Overall, over $42,000 was raised today to go towards research for TS and over $5,500 was from our group, (and we are still not done collecting!) Our team's top fundraiser was our next-door neighbor, aka Kylie's "other grandma". She raised about $600! A big thank you to all of our Falcon Heights neighbors, who donated so generously. Our goal is to see a cure be made at some point in Kylie's lifetime. The golf tournament Neil and his buddies are putting together in August will also benefit TS research. Anyways, Kylie slept during the actual walk but was wide awake to meet her new friends, Mary and Jessi. We also met another family with a little boy named Gavin, who will be having surgery this week. We wish his family much luck, love and prayers. After meeting all of these families today, I actually believe that we can do this. It still sucks and I'm still sad everyday, but knowing that we are not alone makes it so much easier. Kylie's neuro Dr. Frost was there with his two pups and his wife, whom we adore. A few nurses from 7940 were there as well. A special thank you to my 2 very pregnant friends, Nicole and Mandy, whom both completed the walk and did not go into labor- way to go guys! The day ended up being beutiful. We later came home and started building "Kylie's Garden". It is going to be beautiful! Thanks to Ben and Laura, who kept Kylie entertained while we worked, and to Sue, who did as much work as we did! Yesterday, we attended the TSC mini-conference, where we learned about many different programs that may help us in the future. We went out to dinner w/ my family last night. It was so good to see my brother Andy, who was in town for the weekend. Friday we had a baby shower for Baby Noah. It was so good to see all my girls! Kylie ended up having 4 seizures Fri, 4 yesterday but so far saved her best day for today, with no seizures so far today. Well, it's bath time for Miss Kylie. Peace, Love and Prayers- Maria, Neil and Kylie Jo
PS Check out the new pictures

Friday, May 20, 2005 0:44 AM CDT

Happy 8 month birthday baby girl! (As it is now past midnight) Hi all. Today was a good day and we are learning to cherish them. No seizures today and I was mistaken about yesterday, only 2, not 3. As we are learning about this disease, each day is unpredictable. We could have a great day, and then a horrible one the next. We are not sure if we will ever be able to completely keep her seizure free. I guess the days she has only a few we should be thankful. Kylie has recently been sleeping through the night again, which I am definately greatful for! We are thinking about a bigger bed in the near future, as there isn't a whole lot of room for the three of us! Hopefully at some point we will be able to let her sleep in her own room, but I do not see that time coming soon. Miss Kylie is doing so much better sitting up. Today she was only using one hand to prop herself up. She sits for quite a while before she gets mad. We have been working on helping her get onto all fours, which she really seems to like. Our eating issures also seem to be a little better. Although she is not eating as much as she should, she is taking in more. She has been having a great time hanging out with her Uncle Ben. Her Uncle Andy flew in from AL tonight, so we will probably see him tomorrow. ****To every one doing the walk on Sunday***
We are meeting at 9:00 am at the Como Park picnic grounds, on Horton and Como (i think). They are located across from the Como Pool, right by the softball fields. We then check in and bagels and juice are provided. I believe at 10am we start the walk, around Como Lake, then we end back at the picnic grounds, (not the pavillion by the lake). There is a BBQ for everyone after. We can't wait to see you there! A couple prayer requests- A big one for Arianna, another TS kiddo, who is in really bad shape right now, for Zoey B, who is doing well after surgery today and she will continue to do so, for Jessi A, that her seizures may stop soon, and that Jess B continues to do well. Also, for their parents, as we only know too well what they are going through and the hopelessness they must feel at times. And of coarse, for Miss Kylie Jo, that God heal her and send an angel to watch over her, and for her doctors, that God guide them in finding a way to help heal our baby girl. Much love-Maria, Neil and Kylie Jo

Thursday, May 19, 2005 1:19 AM CDT

Hi all. I worked a double today so hence my late entry. Kylie ended up having 3 seizures yesterday and three day. She is now back to having them about 10 minutes into her sleep. It's getting harder and harder to be optimistic about all of this. I know we have to be patient with the med game and trying to find out what is going to work for her, but after spending almost the last two months watching her have seizures nearly everday, I am becoming so frustrated. How much should one little kid have to suffer? I know there are other kids out there who suffer as much as Kylie or even more but when there is nothing I can do to help her, as a mother, I feel so helpless. I just love her so much. Kylie, on the other hand, could care less about her daily drama. She is so full of smiles, it can be contagious. Today she spent the day with her Uncle Ben, while Neil and I worked. She had a very nervous momma, grandma, and even daddy, calling home every 1/2 hr or hr to make sure they were doing ok. Uncle Ben did a great job! We are excited about the upcoming weekend. I have the next 4 days off to spend w/ Kylie. Friday night, we are having a baby shower for Nicole and Baby Noah. Sat, we have the TS Conference and Sun, the TS Walk. Praying for good weather. Please continue to keep in your prayers Zoey B, who is preparing for her resection soon, and for Jessi A, who has started to have seizures again after her surgery. Jess B seems to be doing pretty good, which we are thankful for. And of course, continued prayers for Miss Kylie are always requested. Much love- Maria, Neil and Kylie Jo

Tuesday, May 17, 2005 12:46 AM CDT

Hey everyone. Kylie slept until 10:30am, and I had to wake her up. I gues the melatonin (sleeping pill) we gave her last night really did the trick! I only gave her half the dose too. She ended up having 7 seizures yesterday, the most she has had since we were admitted to the hospital last time. I am super bummed out. She sounded a little snuffly yesterday and today seems to have a touch of a cold. We have been so good about keeping her away from germs but I guess they just know how to find her. Angie from OT was here this morning and worked her magic. Everytime she comes, Kylie seems to do a little bit more that week. I want to share a web site w/ you all. A TS mom made a short video of kids w/ TS. Kylie and I watched it, and of course, I cried and she giggled. It's www.angelfire.com/magic2/faces_of_tsc/ It helped me to see that there are a lot of others going through the same thing. The shocking news of the day- Barbra Hunn, who is the founder and owner of Keys Cafe, called me today and said that her daughter had put our names in for consideration of their annual benefit and that we were selected! I don't even know what to say right now except I am completely shocked, grateful, and of course, crying my eyes out. There are truely some amazing people in this world and we have been honored to come into contact with so many of them since Kylie was dianosed. Thank you from the bottom of my heart. Check out Kylie's new pictures. Love to you all- Maria, Neil and Miss Kylie Jo

Monday, May 16, 2005 12:47 AM CDT

***Check out new pictures***

Our day has not been quite the greatest. Kylie just had her 6th seizure in the last 24 hours. She is having them while she is awake again and they are lasting 10-30 seconds. I give up. There seems to be no rhyme or reason to when she has them. We have not yet decreased the Topamax this week or increased the felbatol. I'm waiting for Carol from Dr Frost's office to call us back. She didn't have any seizures fri or sat, but I worked all weekend so who knows. Neil might not have the same "Momma Hawk Eyes" that I have.=) He did bring her to see me yesterday, so that was a nice way to break up the day. This morning, we had an OT eval at Gillette Children's. Kylie Uncle Ben was nice enough to get up early and go with us. Kylie did ok, but of coarse they recommended therapy 1 day per week, on top of the home OT she will get once a week through the school district. That will be keeping us busy for the summer. She is also going to be going to the feeding clinic at Gillette, as we have been having difficulty getting her to eat any solids. She had been doing great w/ it, but with the 7 Topamax pills she takes a day, she thinks every time we go to feed her, she is getting meds. Except when I gave her ice cream today, she downed a small bowel of it. (Must take after her Auntie Kari!) Kylie is kelping me type, so soory fo r any errors. We also may be starting her on melatonin, to help her sleep, as the felbatol has her staying up until 12am and she has a really hard time settling down. The big walk is on sunday, so praying for good weather. We can't wait to see many of you there! Love Maria, Neil and Kylie

Saturday, May 14, 2005 8:43 PM CDT

Good evening. What a long day! I finally am home from work, just in time for Kylie's "crabby time". Of course, she slept until 9:15 today, where when I'm home w/ her, we get up at 5:45am. Neil and Kylie are going to visit me at work tomorrow. =) No seizures yesterday and so far none today. I hate to get optimistic, because every time I do, she has one. They haven't been nearly as bad as in the past, so we are thankful for that. We've discovered that we have been feeding Kylie the wrong foods this whole time. Apparently, she's a fan of pickles and Taco Bell's Meximelts. (A little too much of both inutero?) We are supposed to try strong flavors w/ her, as they may better stimulate her taste buds. Well, that's all for now. More tomorrow. Love Maria, Neil and Kylie

Friday, May 13, 2005 5:42 PM CDT

H all. What a cold and dreay day! For those of you not from MN, the weather guy said these are the coldest 2 days in May in MN since 1967! Kylie was a trooper today, though. I dragged her out to the Woodbury Garage Sales, where we found some great buys! Kylie got a new little tykes kitchen set and a beauty salon, amongst other things. She loves to look at herself in the mirror, (we all know where her vanity comes from!) This afternoon, we had her IFEP meeting, w/ the Roseville school district and w/ Kylie's OT therapist, as well as some of our family. We laid out the groundwork as to our goals for Kylie's development over the next year. They are also going to help us get set up w/ some other programs. Kylie will be having therapy every Friday morning. After the meeting, Andrea and I took Kylie to Children's to have her labs drawn. They are checking to see if her felbatol level is therapeutic, as well as to see if the med is causing any damage to her liver/bone marrow. Fingers crossed for everything to be ok. We are still waiting on her first seizure of the day. She ended w/ 2 yestersday. We also don't know when we are getting the genetics back. Dr Frost's office called the lab and the results are still pending in Boston. Kylie's Uncle Ben is moving for the summer tonight. She is looking forward to hanging out w/ him all the time. =) (I'm sure that will work well for his social life!) Big news- Miss Kylie finally discovered her toes! She knew they were down there, but the budda belly prevented her from reaching them. But we will take that as the most excitement of our week any time. I have to work my 12hr shifts this weekend so I may not get a chance to write. Kylie has OT at Gillette on Monday. I haven't heard how Zoey B's surgery went yet but please continue to keep ker in your prayers. The big walk is next Sunday. Can't wait to see some of you there! More later- Love Maria, Neil and Kylie Jo PS New pictures will be on the website tonight.

Friday, May 13, 2005 5:42 PM CDT

Thursday, May 12, 2005 0:14 AM CDT

Hi all. I just got home from work and am pooped! Kylie only had one seizure today, suprising, since she was somewhat sleep deprived. She is also again a minor celebrity, as an article about her is in the Roseville review. We are glad that she is helping raise awareness about TS. My goal is to someday be able to have a conversation with someone that I just have met, and when I tell them Kylie has TS, they will say, "Oh, and how is she doing?" and not "What the heck is TS?" I think out of everyone we have told, only one person knew what it was. Anyhow, I unexpectedly got the day off in the morning (Thank you Erica!), so Kylie and I are going to run many needed errands. I also have to take her down to Children's for lab work. I'm also going to try and call to get the genetic results. I can not stand in limbo any more. We would like to try and plan our lives out somewhat (although we have found that to be nearly impossible!), but just need to know if Neil and I are going to be tested. I have been feeling quite frustrated lately, until tonight. I sat and talked to one of my patients, who had gone through quite an ordeal. He knew nothing of my situation, but gave me some great advice. He said, "The way I see it, there are 3 kinds of people. First, the kind that gets angry with God and asks, why did this happen to me? The second kind, who sits and cries and feels sorry for themselves and wishes for what they had in the past. And finally, the type of people who are just grateful to God for being able be here and are happy for just being able to live. And that is the kind of person I want to be." And that is the kind of person I want to raise Kylie to be. Being angry w/ God will get us nowhere, feeling sorry for ourselves will get us nowhere, but being happy to experience life? That will take us anywhere we want to go. It will help Kylie to become the strong person we are finding her to be. I thank God every day just for letting us share her with Him for awhile. And I thank God for sending this Angel to me tonight, to help me realize that we are going to be ok, and to help me see that life is a gift and I will cherish every moment I have with Kylie. Please continue to keep Zoey B in your prayers and that we have good result w/ the genetic testing. Love to you all- Maria, Neil and Kylie Jo

Wednesday, May 11, 2005 9:44 AM CDT

Good morning. We are exhausted this morning, as Miss Kylie was awake for most of the night. I don't know if it was the weather or the medicine or a combination of both but I hope it doesn't happen again tonight. Kylie only had one seizure yesterday, again when she just fell asleep. Her first injury occured yesterday, when she face planted into the floor. (Only minor swelling of the lip). Aside from that occurance, she is doing much better sitting up. We had to reschedule our Gillette appointment for monday morning. Please keep in your prayers a little girl named Zoey, who is having her grid placement on friday. That's all for now. Love Maria, Neil and Kylie Jo

Tuesday, May 10, 2005 0:26 AM CDT

Hi all. I hope all you moms had a wonderful Mother's Day. We decided to take Miss Kylie to Como Zoo. She was happy and babbling for the mile walk to the zoo. 15 minutes after we arrived, she fell asleep. So much for our big adventure. We will have to try again sometime. She is still having seizures, although not as many as we started w/. She had 2 yesterday and 1 today. Her new thing is that she has them about 10 minutes after she falls asleep. I don't know what that's all about. At least she isn't falling over and getting hurt. We experienced our first public seizure on saturday, when she had one at Linders. I didn't even notice, as I was pushing her in the stroller but some lady was staring at her funny. Sure enough, she was having one. We still haven't got the genetic results back and are waiting ever so PATIENTLY, as it has been 11 weeks since Kylie's blood was taken. I am going to call this week. We go to Gillette tomorrow morning for her OT eval, which I'm sure is farther behind than the PT had put her at. That appt should take about 1 1/2 hrs. She has to get her labs drawn this week, including her felbatol level. We increased her dose today and are continuing to wean the topamax. Friday is our IFEP w/ her OT therapist and the Roseville school district. We will find out our plan for the next year. I'm amazed I am keeping all of this straight in my head, because frankly, my mind is exhausted. Next Sat, we will be attending a TS mini-conference, where a wide range of resources will be offered and next Sunday is the big TS walk around Como. Thank you all who are either walking or who have donated. I think our group has over 40 people walking in support of Kylie. You all have touched my heart. It's amazing to see how many people love my precious girl. Thank you. I'll update tomorrow night! Love Maria, Neil and Kylie Jo PS Be on the look-out for updated pictures

Sunday, May 8, 2005 11:41 AM CDT

Dear Kylie- Because of you, I am celebrating my first Mother's Day and I want to thank you. You are absolutely the joy of my life. Even when things seem hopeless, you light up my heart with one of your great smiles. I never knew how truely amazing being a mother could be, nor how absolutely terrifing it could be at the exact same time. You are such a beautiful and happy baby, more so than I could ever have imagined you being. I love holding you in my arms, smelling your sweet, sticky hair, holding your sticky fingers. When you bury your head in my neck, I melt. At the same time, I spend most of the day walking around with a sick feeling in the pit of my stomach, just waiting for "the big one" to happen. I pray to God every night that it won't, that you will be ok. And I know you will. You have had an ok weekend. Thursday, you had 2 seizures, 4 on Fri, 3 yesterday. I'm not sure if you had any today, because you and daddy let me sleep in and you guys were napping when I woke up. Friday, we went to therapy at Gillete. And do you know what? Even though you are about a month and a half behind, they told me you are avanced in some areas! What do you think about that? They said they will re-evaluate you in 6mo -1yr but they don't need to see you regularily, esp since you will get therapy through the Roseville School deistrict. You see the OT at Gillette on tues. But you are sitting up by yourself now! Not for real long periods of time but you are doing it! Way to go peanut! Yesterday we had Andrea's wedding shower, where you charmed the audience. You got to snuggle with both of your great-grandma's. Sat night Auntie Kari slept over, and you slept on her tummy all night! Today we might go to the zoo and will be visiting with your grandmas later. Well baby girl, I just want to thank you for picking me to be your mommy. I will try my very best to do right by you and I promise to love you for the rest of my life. Love Mommy

Wednesday, May 4, 2005 9:08 PM CDT

Hi all. We had a pretty good visit w/ Dr. Frost today. He said Kylie looks great! The little piglet is also up to 22 lb (w/ a wet diaper and clothes on), so I guess our concerns w/ her loosing weight have been unfounded. We are keeping her on the felbatol and slowly weaning off the topamax. Our goal is to totally be off the topamax at some point. We also straightened out where her tubors are. On the MRI, the tubor appears on her right temporal/occipital region. On the EEG, she is having seizures from that area, as well as from her L frontal area. That means she most likely has a tubor on the L frontal area but it has not appeared on the MRI yet. I also asked about the tumors that can appear on the skin, when to look for them, what they look like, etc. He said that it is hard to tel w/ her, as she is so fair skined and she has really rosey cheeks, but she may have a little bit on her (r?) cheek. There are tiny little lines, almost like tiny sm blood vessels. We will keep a close eye on them and will probably see the dermatologist in the near future. He also talked about a clinical trial we could look into, where they are using chemotherapy meds in TS kids to help prevent the kidney tubors. They also may use the chemo meds in a topical form to prevent/heal the facial tubors. We are not there yet but will keep it in the back of our minds. With the chemo meds, there is always the danger of bone marrow suppression. If all goes well, Kylie will have a follow-up MRI in Feb or around then. Her kidneys will be followed up around age 2 or so. We see the eye doc for a follow-up in August. He also said Kylie's genetic tests should be back. I'm anxious and freaked out of my mind. I've explained it a little bit before but here is the run down. If the testing comes back w/ a defect on the TS1 or TS2 gene, then Kylie has a confirming diagnosis of Tuberous Sclerosis. Neil and I would then be tested for the gene. Most of the time, it comes back as a spontaneous mutation and we would not pass TS on to any further children, as neither Neil or I would have it. If one of us does test positive for TS1 or TS2, then any further children would have a 50% chance of TS, odds we feel are to high to risk. If Kylie's test comes back as a variant, then we would not be tested, as there is not a further test to see if we had TS. Her results would be sent to Texas, where they are doing research on kids who have TS but have a negative testing of the TS1 or TS2 gene. I guess that doesn't make me feel any better about having future children, as it would be unknown if we where to pass it on. What a mouth full. Anyhow, no seizures yesterday (yeah!) and so far none today! If we can continue to be seizure free, anything TS throws at us, we will be able to handle. We have a great family, wonderful friends, and so much support from our community. Thank you all so much! I am off for the next four days, so Kylie and I plan to enjoy every minute of it. We are planning on going on vacation for a week in August, to a cabin up north, so hopefully her seizures will be under control. We need to relax and have fun! Thank you for the continued prayers. Much love- Maria, Neil and Kylie Gibbons

Tuesday, May 3, 2005 12:47 AM CDT

Hi all. This will be a quick update- kylie is sitting w/ me, trying to help type. She had 2 seizures yesterday, both when she was falling asleep and both for her daddy. (I haven't witnessed a seizure since Friday!) So far none yet today. If anyone is from the Como area, check out this month's "North End News". Miss Kylie has made her debut. There is a short article about the walk, with Kylie's picture. She has still been a bad eater. We see Dr. Frost tomorrow, so hopefully he won't change the meds around too much. Neil is gong to the WI fishing opener this weekend, so it will just be us girls. We are having a wedding shower for Andrea on Sat and are excited for the predicted 75 degree weather! Kylie is very excited to see her Great-grandma Perlt, who comes home from FL this week. Update on Jess B, who has not had a seizure for 5 days! Way to go! All for now- Love The Gibbons'

Monday, May 2, 2005 0:09 AM CDT

Hi all. We had a relatively good weekend. Although Kylie ended up w/ five seizures on Friday, she only had 1 on sat and one today and she was nice enough to share both of them w/ Grandma Karen, so I didn't have to see her have any! Friday Kylie and I went out to dinner w/ Jody, where Kylie sat in a regular restraunt highchair for the first time since she has been out of the infant seat. Major improvement in our lives, as now we can go out to dinner on occasion and not have to hold her the entire time, (we have learned to cherish the small things in life!) Saturday Neil worked so Kylie and I hung out all day. Later we went to Andrea's wedding shower, where kylie was a complete angel the entire time. My mom took her in the evening so I could get some stuff around the house done. I worked this evening and just got home. Not a real exciting weekend, which we are GREATFUL for! One small sad moment yesterday- Kylie got her "Access Denied" form for her life insurance. We were going to buy her a policy before we found out about the TS. I had all the stuff filled out so I said , why not. I mailed it in w/ her new diagnosis and was shot down. We decided she will just have to marry someone rich and, as Grandma Donna would say, with one foot in the grave and the other on a banana peel. Anyhow, tomorrow we increase her felbatol by 1ml and go down 1 pill of the Topamax. She is being such a stinker about taking her meds. Now, everytime you go to feed her, she clamps her mouth shut and turns her head because she thinks you are giving her medicine. I am really concerned about this, because if she loses any more weight, they are going to switch her meds again. Any ideas anyone? We see Dr Frost on Wed, so hopefully we will get some encouraging news. We got a letter from the cardiologist, restating that Kylie's heart is almost perfect and is not affected by TS whatsoever. We are thinking of framing it, almost like it is Kylie's first A in her battle against TS. On to the Bailey (the golden retriever) sagas- Yesterday she hoped the gate, went up into Kylie's room and got into the diapers. She proceeded to drag the nastiest dirty diaper out, and smeared poop into the carpet (cream carpet no less). Needless to say, she did not get any kisses from us. Wee, I'm going to go see what the girls on Wisteria Lane were up to tonight. Praying for a seizure free week. Love Maria, Neil and Kylie Jo
PS One of the other TS mom's that has been very helpful to us was recently featured in their local paper. Check out Arianna's story at:
http://therecordherald.com/articles/2005/04/28/local_news/news01.txt
PPS Check out the new picturs

Friday, April 29, 2005 2:01 PM CDT

Hi all. I tried to update last night when I got home from work, but it didn't work. Anyways, Kylie had a good day yesterday. Only 2 seizures, about 15 seconds each! So far today she has had only 1. Hopefully by next week, we will see a decrease in the seizures when we increase the felbatol. Seizures are becoming a part of our "normal" and are getting easier to deal with, although it would be great if we didn't have to "deal" at all. It was those few days last week when she didn't have any that didn't feel normal. We have a family conference on May 13th w/ the Roseville School District, to go over Kylie's Bailey's Skills Assessment and to get a plan in action for her therapy. We will be setting up goals for her to reach over the next year. We are also thinking of taking her to Gillette Children's for some additional therapy, to hopefully get her to where she should be. They have aqua therapy in the pool that would be great for increasing her tone. I got an email regarding the "Dear Colleague Letter", in which th TS Alliance is trying to obtain more money for TS research. They are asking for $10 million for reseach. Last year only $3.2 million was allocated. The first year only 18 members of congress signed the letter, last year 44 and this year, 58 members of congress signed it! (Although MN was not one of them) =( I guess our state is more concerned with the important things in life, such as a new stadium and professional hockey, not a baby who has seizures everyday. $3.2 million wouldn't even cover a professional athelete's salary for a year. How is it going to help find a cure for my child? Anyways, a big thank you to the states of AL, AZ, CA, CO, CT, FL, GA, IL, MA, MD, MI, MO, NH, NJ, NM, NY, OH, PA, SD, UT, VA, WA, and our neighbor, WI. Thank you to those state represenatives! Hopefully the Alliance will get the money they need. A big congrats to Jess B, who is now awake and home frome the hospital after her 6hr status seizure, and to Jessi A, who is doing great after her brain surgery and is walking again! Way to go girls! Again, thank you all for your continued support. Although Kylie has taken us down a bumpy road and things are going a little bit slower than expected, Kylie has taken us on a beautiful ride. Love Maria, Neil and Kylie Jo
PS Extra prayers for Baby Caden today, as he had his eye surgery.

Tuesday, April 26, 2005 9:23 PM CDT

Kylie can now play peek-a-boo! We have been practicing all week and she will actually play with you (she pulls the blanket over her face, then pulls it down)! She was doing it all day but of course wouldn't do it for her daddy so he thinks I'm nuts. She has also been working hard on crawling. She can get up on her knees and can push herself up on her arms, but hasn't figured out how to do them at the same time. Hopefully she will get it soon! But she is really making strides in the right direction. She is turning into a little stinker though. She has decided that she doesn't like her Topamax, so she will purse her lips together and turns her head, so all of the medicine lands on the side of her face. She had 3 seizures today. Carol (Dr Frost's nurse), called to check-up today and she said that Kylie is on a tiny dose of felbatol right now so to see any real improvements, we will hopefully see them by next week. I have a feeling if this med doesn't work, we are in big trouble. This is supposed to be one of the best ones, if not the best one, so let's keep our fingers crossed! We meet w/ Dr. Frost next wednesday, so hopefully we will have better days by then. Neil & I are starting our new schedule tomorrow. He is working 5am-1:30pm and I am working 3pm-1130pm, so Kylie can stay home all the time. Bummer for her, but the more she gets sick, the more seizures she has. Our goal is to get her meds somewhat under control so we don't have to worry too much if she gets exposed to something. We had such a fun day together, just hanging out. I just love being her mommy, seizures and all. Congrats to Jessi A. and her family, who were discharged from the hospital today, after having her tubor removed on thursday. Way to go Jess! Keep the prayers coming our way! Much love- Maria, Neil and Kylie Jo

Monday, April 25, 2005 10:20 PM CDT

Hi all. Well, the seizure count is back on. We ended w/ 5 saturday, 6 sunday, and so far, 3 today, (The 3rd one occurred at Home Depot when he dropped a big metal bin next to Kylie's head- instead of crying, she had a seizure, so we will blame that one on him,). =) Anyways, I worked all weekend but Neil and Kylie visited yesterday, so that brightened my day! I talked to one of the ped epileptic pharmacists at work yesterday and she really calmed my fears about the felbatol. She said that there hasn't been any reported cases of aplastic anemia since 1994, most occuring w/ adults who had other underlying conditions, such as cancer. She said it is a great drug for kids who need to be on it. The main side effects w/ kids are weight loss and incresed alertness. The kids tend to still get a good quality of sleep, just a whole lot less, (as Kylie is demonstrating right now- she is singing very loudly to Neil). I will deal w/ less sleep if it allows Kylie to have less seizures. It will just give us more time to learn new things. We went until 3:30pm before we had a seizure today, so that was good. This morning, Kylie and I went on a much needed outing, to have lunch w/ some girls from work. We then visited Grandma Karen for awhile. I took the dogs for their annual big vet$ checkup this afternoon. Everyone checked out perfectly, although they have each gained 2 pounds (thank you Sue!). Buster is also an entire year older than we thought. Hopefully we won't skip any of Kylie's birthdays! Today Andy found out that there is a 70% chance he will be in Iraq in March. We pray that God will keep him and all of the other men and women over there safe. My cousin BJ will be leaving in July (I think) for Iraq. Hopefully God will keep these boys safe! We could use a little less family drama for the year. Jessi A. continues to do well after her surgery and will we going home anytime, if she isn't already there. Jess B still isn't totally awake after her status seizure, so we are praying extra hard for her. Thank you so much to everyone doing the walk w/ us. It means so much that you guys are helping us support research for this crappy disease. Another prayer request for another TS kiddo and her family, Arianna. Her family is going through a rough time right now and could us a few extra prayers! Well, Kylie is still babbling away, so I better go. I think I'm in for a long night! Love Maria, Neil and Kylie Jo

Saturday, April 23, 2005 9:32 PM CDT

Kylie's favorite seizure day is saturday, when I work my 12 hour shifts. We had been doing so well without seizures and Kylie even slept in until 9:45. She got her meds 2 hours late, (my fault) and I know she should be at a therapeutic level where it doesn't matter, but I keep thinkg if she would've gotten them on time, maybe she wouldn't have had seizures today, (so far a total of 4). As Dr. Frost always says, "It's just the nature of the beast", which I realize, but I just want to kick the beast in the ass! The first 3 seizures she had were just the quick 10 second ones, where her head goes down and she gets the goofy smile. The last one was 20 seconds of her extremities being stiff. No jerks though. Dr Frost's office didn't call back Fri., so I am going to try and call them Monday and see what our med options are, besides the Felbatol. Good news for Jessi A and her family- still no seizures and Jessi is talking a lot! They get to go home mon or tues! (After having brain surgery this past thurs!) Way to go Jessi! Jess B is off the vent and though not totally awake, is doing much better! A special request for prayers for baby Caden, who is having eye surgery on Friday, and for his mommy, who has been through so much and needs a much needed break! This mommy apprecates the 3 lovely seizure free days but would love to have a few, (many!) more! I work 12 hours tomorrow and won't make it to church, so any one going, please throw a few extra prayers from me up to the big guy. Much love, Maria, Neil and Kylie Jo

Friday, April 22, 2005 9:21 PM CDT

We are on hour 87 without a seizure! I have a sick feeling in the pit of my stomach just waiting for the seizures to start again. I feel like w/ everything feeling sort of "normal" right now, I am setting myself up to being depressed all over again when she has another one. I know, I should be happy, but I'm just so damn nervous! Kylie has been such a good girl today. We had girl day w/ Kari and Laura. We just layed around, as Kari wasn't feeling well. Ben came over for dinner tonight and Kylie showed off her rolling skills to him. Jessi, the other kiddo w/ TS that we recently met, had her brain surgery yesterday and it went very well! They were able to get all of the very large tubor out and she has not had any seizures since. She has even talked already, which they weren't expecting her to do for many days to come. We are so happy for her and her family! It gives us hope for the future. Praying, praying, praying that God continues to hear our prayers and keeps Kylie seizure free. Your prayers are all helping! Love to you all- Neil, Maria and Kylie Jo

Thursday, April 21, 2005 11:43 PM CDT

Hi everyone. Sorry for the late entry but I finally got to sit down for a minute. Big news- No seizures for 2 days!!!
Last seizures was tues at 6am, when I had to give her diastat (valium). That lasts in her system for approx 8 hous, so that is not why she hasn't had a seizure. Maybe God is finally hearing us! Anyways, I'm not going to get too excited because I'm assuming this is just a fluke. It sure is a nice break for Kylie though. Great news- No PDA in her heart! We saw Dr. Sutton, the cardiologist, today and he said she has a tiny hole called a patent foramen ovale (sp), which 25% of normal adults have and it will cause her no problems. We do not need to follow up w/ him at all! She had another echocardiogram done, as well as an EKG, both normal. He also showed us her chest x-ray (normal) and we were suprised how big a baby's heart is. This morning, Angie (Kylie's occupational therapist) and the teacher came out to perform the Bailey's Skills Assessment to see if she qualify's for therapy. Of course, she does. It was a little sad because we got to see what she is behind in, in black and white. She was scored on a scale of 1-100, with 77 and above being "normal". She scored a 73 for her mental abilities, which puts her at about a 5 month old level and a 56 in her physical abilities, which puts her at a 4 month old level. We knew she was going to be behind physically but I am really bummed she is behind mentally, (although not by much). Most of the skills she got docked points on is for not reaching for toys and shaking rattles. Of course, once they left, Kylie was laying under her dangling toys, grabbing them and putting them in her mouth. She is meeting her milestones, although she seems to hit them at the very end of when she should be doing them. She is more social than anything. She loves faces and voices and is a big conversalist. It's just hard not knowing if she is a little behind because of her disease or because this is just who she was just born to be. I guess they do go hand in hand. I'll just blame it on Neil =), since she looks more like him anyway. She weighed in at 19lb, 13oz and is 27 3/4in long. She is slowly loosing a little weight at each visit. Hopefully we won't get to a point where it is too much, because a side effect of the topamax is anorexia. We are waiting to hear back from Dr Frost's office but we have not started her on the felbatol. After much research, we do not feel it is an exceptable option right now. The risks just seem too great. We have not heard how Jessi's surgery went today but praying all went well. Jess B was still on the vent, last I heard. Apparently, she has RSV and put her on the vent because the seizure meds would suppress her respiatory system. Praying all goes well w/ her. Us girls, (me, Kari and Laura) are going to go watch a movie but praying for continued seiure free days! Love Maria, Neil and Kylie

Wednesday, April 20, 2005 9:26 PM CDT

We have had a good day but also recieved bad news tonight. A little girl we met at the hospital on our last admission, Jess Beecher, had a 6 hour seizure and is on life support in ND. My heart is breaking for her and her family. Please keep them all in your prayers. Neil stayed home w/ Kylie today. She has seemed sleepy today and has been napping since about 7pm. She has not (knock on wood) had a seizure since I gave her the diastat yesterday at 6am. This is the longest she has gone w/o a seizure since Good Friday, when our seizure nightmare started all over again. Funny how it happened on "Good Friday". Nothing about the day seemed too good to us. Anyhow, Neil is going to wake her up now to give her evening meds to her, so I fear a seizure will come on anytime. We have not yet started the Felbatol. The pharmacy didn't have it in stock so we didn't pick it up until tonight. I am feeling sick about the whole thing, especially when the pharmacist asked us if we signed a consent to give her the med, because of the side effects. I am going to call Frost's office tomorrow and discuss it w/ them again. Tonight we were down at Children's for Kylie's labs and chest xray. We then visited the girls at work and then met Jessi Andreo's family, another TS kid. She is an absolute sweetie pie. She is having surgery tomorrow to remove her tubors. Keep her in your prayers that this will be the miracle for Jessi's future. My parents are in the air to Alabama as we speak, so keep them in your prayers as well. Good luck tomorrow Andy! Another prayer for Aunt Rose and Uncle Jerry and their family, who also have been through so much. Praying, praying, praying for my beautiful baby girl's brain to heal and for all of these other amazing kids we have met through TS. Well, us girls are going to go hang out. Love to you all- Maria, Neil and Kylie Jo

Tuesday, April 19, 2005 8:55 PM CDT

Hey all. Miss Kylie has been misbehaving again. We got all ready for work/daycare this morning and were just about set to walk out the day when the seizure fairy decided to rear it's ugly head. She had a 35 second seizure, then did her arm jerks for 3 1/2 to 4 minutes. I kept doing the "okay, if she has one more I'll give her diastat. Okay, if she has one more." Well, she kept having "one more", so I loaded her w/ diastat, told Neil he needed to stay home w/ her, gave them both a kiss, hopped in my truck, and burst into tears. It almost killed me being away from her today. Luckily, work was just busy enough that I didn't have time to dwell on it the entire day. She did not have any more seizures the rest of the day and is in bed, (hopefully), for the night. We talked to Dr. Frost's office and they decided they are going to change her meds. Our options are Lamictal, which may not work for a couple months, or Felbatol, which could cause bone marrow suppression, aplastic anemia or liver failure, the last two which may result in death. Dr. Frost thinks the Felbatol is the one that would most likely work for her and that he has not seen those severe side effects with any of his kids. Well, this is my kid and I don't want her to be his first case. They monitor her labs while on this med once a month. I told them the only way I will allow Kylie to go on it is if they monitor her labs every week, at least for the first few months. I called Dr. Delahunte, our ped, and she agreed. So we start the felbatol tomorrow. I hope we are not making the wrong choice. Do we not try the med that may help her and contine to watch her seize, or do we try to enhance her quality of life, while at the same time praying to God that this won't shorten it. And to think, a few months ago our biggest worry was do we let her date at 16, or do we look her in a closet until she is 30? Sometimes I think this parenting thing isn't all it's cracked up to be. But then Kylie gives me a big gummy grin and blows her veggies in her daddy's face, I have to believe everything will be ok. We have to get her baseline labs drawn tomorrow, as well as try to fit in a chest x-ray prior to her cardiology appt thursday afternoon. Neil is going to try and stay home with her again tomorrow and possibly work in the afternoon. Hopefully we can get this done on my lunch hour. Well, I'm going to go take a soak in the tub. Hopefully there won't be too many updates tomorrow. Now that we have a new pope elected, I'm hoping that will free up a little bit of God's time so he can see us jumping up and down for his attention. At this point, a little miracle would be greatly appreciated. Love Maria, Neil and Kylie Jo

Monday, April 18, 2005 9:35 PM CDT

Kylie and I were having a fabulous day, until about 2:30 this afternoon when I had to load her w/ diastat. She had one small seizure this morning, but was so happy all day. We spent most of the day cleaning. It was so warm out today! Kylie sat in her high chair and we had the back door open, where she enjoyed the breeze- it made her giggle! She napped well, had her bath, then had another seizure. Except this time, she had the arm jerks after it for about 3-4 minutes, which is why she had to have the diastat. I called Frost's office and they are going to be doing a med change. They are supposed to call me at work tomorrow to let me know what they decide. Of coarse the little rascal waits until I go back to day shifts to start all the commotion again. I'm hoping to get through the next 2 days, then I think I will be working primarily evenings. I found out that the vigabatrin, the med she may go on that is not legal in the US, may not be as hard to get as we thought. It will cost about $250.00 every three months or so but could possibly be covered by insurance if the doctor verifies that she must be on it. I won't hold my breath though. We got our latest hospital bill of $28,100 and an ambulance bill of $1300. This is one expensive child! Again, thank God for insurance. Kylie and I had a middle of the night party last night. The thunder and lightning woke us both up. Thank you to Aunt Jo and Uncle Walt, for the very cute pink elephant. Kylie loves to chew on it's nose. Also, thank you to Marilyn Triemert for the scrumptous spaghitti dinner. Neil didn't know that sauce doesn't always come out of a jar! I guess I don't make many home cooked meals. Well, I'm going to turn in. Praying for Kylie to have a good day at daycare tomorrow. Thank you all for your continued prayers. Love Maria, Neil, and Kylie Jo

Sunday, April 17, 2005 10:56 PM CDT

Kylie and I love her daddy so much! He finally fixed our bathtub faucet and we now have water pressure, so us girls can be bathing beauties again! For Valentine's Day, Neil and my dad put new fixtures in the bathtub/shower, so it would be "fancy" and would stop dripping. I wouldn't hire them out as plumbers because since then, it has taken 2 hours to fill the bathtub By then, the water is cold. I went back to work last evening and while I was gone, Neil performed his miracle. Funny how something so minor as water pressure can brighten up your day. Anyways, Kylie only had 1 seizure yesterday (yeah!), and slept all night, (double yeah!!), but decided to make up for it today and had 4 seizures. We increase the topamax again tomorrow but I am sick of the waiting game! I want her seizures stopped! I know it is wishful thinking, but I really think I can handle anything that comes our way if we could just get rid of her damn seizures. She has been in a great mood today though. We spent the day at MOA w/ Grandma Karen & Auntie Kari, looking for dresses for the wedding. We found a beautiful pink party dress for Kylie to wear, although she'd rather chew the flowers off of it. Kari and I also got our dresses but my mom is holding out for Herbergers. We had such a fun day. Neil got to get out on the golf course for the first time this year, shooting a 75, (way to go!) Happy belated birthday to Grandma Kathi, which was on April 6th and I think we forgot to mention. We still owe you a birthday dinner! We've decided Bailey (the golden retriever), does not like to come in after she is let out in the morning, as a lot of her bandit episodes occur in the early am, when we go back to sleep. Today she chewed up a stuffed animal and got into my work bag, where she took out my wallet, stethascope, and magazine, to eat the chocolate bar I had forgotten about. At least she didn't chew a hole through the bag this time. She is now being locked up when we aren't watching her, which makes Buster quite pleased. Thing are coming along quite nicely for the TS walk. Thank you to everyone who has donated money to the cause and to the many of you have collected pledges and plan to do the walk w/ us. It means so much to us that you can be there. Also thank you to the girls at work- you guys make my days being away from Kylie so much easier to deal with. There is always a hug, a smile, a shoulder to cry on and you guys really make United such a wonderful place to work at. Tomorrow I am off and we have many errand to run. Good luck to Uncle Andy, as he prepares to graduate from flight school on Thursday. May God bless you and protect you as you fly the sky. My parents are flying down there Wednesday night and Kari is staying w/ us, so Neil will definately be outnumbered. Thursday Kylie has her Bailey Skills Assessment and then sees the cardiologist. Praying for good news! Love to you all - Maria, Neil and Kylie

Saturday, April 16, 2005 11:33 AM CDT

Happy Birthday Grandma Karen!q TGB NB N VB BN- LOVE kYLIE What a rainey day! A good day to stay home and cuddle, except I have to go back to work this evening. =( Oh well, it will be a good change of pace. Thursday ended w/ 4 seizures, yesterday w/ 2. Today she had one small jerk of her arms, but no regular seizures. Last night Kylie got up 3 times, then woke up at 730am and just fell asleep about 10 minutes ago. She has been in a great mood though. Yesterday we helped Nicole register, then Jody & Dan visited. Last night we went to Bridgit's for girl night, but I ended up going home at 10pm because I was exhausted. Kylie stayed w/ grandma and Bridgit until 1:00am, then grandma dropped her off. (Thank you!) Miss Kylie is still working on getting rid of her cold. She had a temp yesterday, which I assume is from her shots. Tomorrow we are going to celebrate my mom's birthday w/ her and we are going out to MOA to look for dresses for Andy's wedding. Praying for continued seizure control. Love to you all- Maria, Neil & Kylie Jo

Thursday, April 14, 2005 6:22 PM CDT

Today has not been a favorite for Kylie. It started in the middle of the night, when she woke up 2-3 times, the last time I actually woke up first, because she was sleeping in my arms and I could feel her seizing. Not a fun way to start the day. So far today she has had 3 seizures and some muscle jerks. Yesterday she had one seizure and maybe some jerks. We went to the pediatrician's today, where Kylie got a clean bill of health. Yeah! Her ears look great bu the Dr suspects she is getting over a sinus infection. She got her 6 mo shots today, which I was very leery of doing but with all of the illnesses she has already had, how could I not. We then had to go over to Children's for some bloodwork. The ped was a little concerned because of Kylie's excesssive thirst lately, but her blood glucose was normal. They drew her topamax level too but don't have the results back yet. We talked to neuro today too, as there were some discripencies when we should be giving her diastat. To any of you watching her in the future, she gets it for 4 or more seizures w/in 2 hours, a seizure that lasts more than 3 min, or a cluster of seizures that last more than 3 min. Kylie is super crabby right now so we are glad her daddy is home to help out. Kylie lost a little weight, (she has plenty to spare) and is now weighing in at 19lb, 15oz and is 27 1/2 inches long.I have a little more info on the genetics of TS. The blood they sent out from Kylie in Fwb is in Boston, where they are looking for the TS1 gene "hamartin", which is located on chromosome #9 or the TS2 gene "tuberin", which is located on chromosome #16. These chromosomes supress tumor growth but kids w/ TS have abonormalities with these chromosomes, where tumor growth isn't being supressed, hence the growth of these tumors. An amazing mom, whose daughter also has TS, contacted me a while back and I was able to check out her site. What a truely amazing story she has. Check her out at www.caringbridge.org/pa/arianna. It was if she was writing my exact thoughts. Somewhere on her site she had posted another TS parent's insite to the disease and it really struck home w/ me- ""Alright, TS is a m***f***'ing, ^$%@#$* *%$*%@#$)## *%)#)@*% piece of crap diagnosis to get. It just plain sucks. I hate it. I hate that my daughter suffers in some way every single day because of it. It has devastated every single person in our family dealing with Haley's issues. We have had to see, do,
think, and believe things we never wanted to have to look at in our entire lives." I gues that is the general feeling of every TS parent. Tonight I will again be attempting to finish my spring cleaning. A proud moment today- Bailey did not get into anything while we were gone today! Yeah! Lisa- I would love to try the bitter apple but I think I will have to spray it on everthing! Buster will not be having seizures today. Kylie puked earlier today, along w/ some of her medicine and Buster had the decency to lick it up for me. He is so helpful. Tomorrow Kylie and I are going to help Nicole & Baby Noah register at Babies R Us. Tomorrow night we will be spending girls' night at Bridgit's so Neil can hang out w/ his friends. I go back to work saturday and am praying Miss Kylie will behave while I am gone. Keep the prayers rolling our way. Love to you all- Maria, Neil and Kylie Jo Ps I am making Neil update pictures tonight!

Wednesday, April 13, 2005 3:52 PM CDT

Happy beautiful spring everyone! What a gorgeous day! Last night, Kylie became a rolling machine! Yeah! She had only rolled a few times over the past month and I have been the only one to witness it. Since everyone thought I was lying to them, Kylie decided to show off to Neil and Grandma last night. Once she started, she didn't want to stop. This morning, she was rolling all over the living room, chasing after Buster. She loves to tug on his ears and he in turn gives her a big sloppy kiss. It feels so wonderful that she is doing something normal! She is driving me nuts, though. She went to bed at 9:00pm, got up at 11pm, 1245am, 445am and 730am. I think her ears must still be bothering her or maybe it's her cold but I need sleep! I know it is all part of the joy of motherhood but I need my beauty sleep. I don't want to jinx anything but so far today we have been seizure free. I know she will probably have some tonight, but God, it sure would be great if she didn't. My mom thinks it's because we gave her some magic juice yesterday, but I'm hoping the meds are finally kicking in. We went to Grandma Karen's to play today and then I went and ran some errands. Bailey struck again while we were out. She attempted to chew up the children's tylenol bottle (again), which she got off a very high shelf. I was suprised how durable the bottle was. She didn't even get through! Then she started to chew up the prizes for Andrea's shower. We will be locking her up when we leave from now on, but any ideas Lisa or Patti? I guess you can have her Sue! Tomorrow we go back to see Dr. Delahunte and I'm assuming we will not be getting her shots. I'm going to go continue my spring cleaning while Kylie naps but keep the prayers coming! Enjoy the beautiful day! Love Maria, Neil & Kylie

Tuesday, April 12, 2005 10:09 AM CDT

Hi everyone. Well, Kylie had her first seizure yesterday at 1:00pm, so we got to enjoy a seizre free morning- it almost felt normal again. She made up for it last night by having a total of 6 seizres for the day. We thought we were going to have to give her diastat, as she had 3 seizures in a row. If she has 4 seizures w/in an hour, she gets it. It's just so hard to do normal things! Take this morning- all I really wanted to do was take a shower. Do do that, Kylie has to lay on the floor next to the shower and I have to keep the shower curtain open. Buster and the cat decided to join her, so I had 6 eyeballs watching me, (made me feel self-conscience! Angie from OT came to exercise w/ Kylie today. kylie decided to show her appreciation to her by demonstrating her seizure technique. Angie will be back next thursday w/ the teacher to do the Bailey Skills Assessment w/ Kylie. Later that afternoon, we have an appointment w/ the pediatric cardiologist to check out Kylie's PDA (totally unrelated to TS). This thurs, we see Dr Delahunty for 6mo shots, labs, and an ear check. We have an appointment May 4 w/ Dr. Frost to see if we need a med adjustment. Kylie is starting to develop more of a cough w/ this cold, bringing us back to our bronchiolitis days. Hopefully we won't be nebbing this week. Our little peanut has really enjoyed getting up in the middle of the night over the past few weeks. Last night, she got up twice. Maybe she is going through a growing spurt, but I shouldn't have taken for granted the months when she slept for 8-12 hrs at a time! Thanks to Jane, who brought us yummy cookies yesterday. Buster and Kylie are napping together right now and look so cute! I'll have to get a picture and put it on the web. I found a quote on another caringbridge site that I wanted to share. "The friend who holds your hand and says the wrong thing is made of dearer stuff than the one who stays away," -Barbara Kingsolver. I want to thank those of you have stayed with us though all of this. Your support means so much. Love to you all, Maria, Neil and Kylie Jo

Monday, April 11, 2005 11:12 AM CDT

This will be a quick update, as I am doing this one-handed while Kylie drools all over the keyboard. Her "cold" developed into a temp of 101.1, even w/ tylenol, some vomiting & diarrhea, (just like what she had when we were admitted to the hospital). Neil also has a cold/fever, although if you asked him, he is dying from mono, just like the last 56 times he has been sick. =) Kylie had 4 seizures yesterday. Today we incresed her am dose of topamax. So far we have been enjoying a seizure free day! (knock on wood) She has been having seizures every morning like clockwork since this all started but so far so good. We had a nice time at the BBQ yesterday. The weather held up and Neil's burgers were yummy, (sorry dad). We took Kylie for a late night stroll last night. She loved to wiggle her toes in the wind and laugh out loud. We decided that ou Golden Retriever, Bailey, is going through some jealousy issues or something. During our morning nap, she went into the diaper bag, (which was hanging up), and proceeded to chew up 4 packs of formula, (at about .75 a pack). She also unwound the diaper baggies. Last night, I caught her trying to chew up the children's tylenol, (which she took off the counter). She has been such a good dog over the past year so this is all new. I guess we need to give her a little more attention. Of course, I let her outside and she makes a bee-line to Sue's house. Well, Kylie is blowing rasberries to you all. It's bath time so talk to you all later. Prayers for seizure free days! Much love, Maria, Neil and Kylie Jo

Sunday, April 10, 2005 12:36 AM CDT

Hey everyone. Kylie is again a bit crabby today. Apparently, every little germ she is to exposed to, she catches. She now has a mean cold, complete w/ a runny green nose, cough and congestion. She did pretty good yesterday, with only 3 seizures. So far today she has already had 2. Whenever she is sick, she has a lot more seizures. Besides puting her in a plastic bubble, the only thing I can really do is to ask any future visitors that are sick, please visit us when you are healthy! A little cold that doesn't seem like a big deal puts our week down the drain. Anyways, yesterday was such a beautiful, beautiful day. We set up Kylie's new swing in the backyard and she loves it! Auntie Kari spent part of the afternoon pushing her in it while I got some spring cleaning done. Kylie was on a great schedule yesterday. She took a 1 1/2 hour morning nap and a 1 1/2 hour afternoon nap and was in a great mood all day. Today is a different story. Her daddy is home and is a little more lax on the sleeping schedule. Last night Kylie and I went out to dinner w/ Grandma Karen, Uncle Ben and Laura. Neil was working and Grandpa & Auntie Kari went to the Father/Daughter dance for St. Bernard's down at Harriet Island. Later we went to Target to get wedding/baby shower supplies and some much needed diapers. Today is more of a lazy day. I need to finish my spring cleaning and we are going to my parents for a BBQ (hopefully before it rains!) Neil is taking over the grilling duties, as we took a family vote and decided to retire my dad's BBQ abilities (bloody hockeypuck burgers). We are looking forward to the upcoming busy spring/summer. Andy graduates from flight school in 2 weeks! Congrats little bro! My parents are flying down to see him and Kari is staying w/ us. I am hosting Andrea's wedding shower in a few weeks. We will be busy w/ lots of wedding stuff in May and then the big wedding happens over Memorial weekend. Kylie is sooooo excited to see her Uncle Andy! She has only met him a few times in her short life, but will only see him that weekend and then the two newlyweds are back to Alabama until the end of June, then back here for good! Congrats to Andrea, who graduates in May from nursing school, and got a job at the VA. We have another baby coming into our lives in early summer and will be having a shower for baby Noah in May as well. Also in May, a conference for TS and the big TS walk. Thank you to Kathy Schueller, who is making Kylie buttons for our team to wear. Our lives are going to be very busy over the next few months and we are praying to stay out of the hospital! We are definately not up for a week stay every month. One other thing I forget to add when I updated about the neurologist visit- after Kylie goes through puberty, we are going to have to monitor her lungs very carefully. She may end up having pulmonary problems, something that only happens to girls w/ TS. Thank you so much to Jonathon for signing our webpage. You give us hope that maybe things won't end up as bad as they seem right now. You have amazing strength and it was refreshing to get the point of view from a different perspective. We need to remember that this is Kylie's life that is truely affected, not ours. We need to support her an advocate for her in every way we can. Thank you to everyone who has supported us on this difficult journey. Prayers for seizure free days ahead and peace for our sweet girl. We increase her meds tomorrow so hopefully that will help! Love to you all- Neil, Maria and Kylie Jo P.S. We are going to add new pics so watch for them soon.

Friday, April 8, 2005 10:38 PM CDT

Hi everyone. Kylie is slowly starting to feel like her old self. Her seizure total yesterday was 5. She was up until midnight, slept until 5 am, ate, goofed off, had a seizure at 5:45am, slept from 6:15am-9am, took her meds, had another seizure, ate, played, had another seizure, napped, ate, played. We explored the yard today and found that Kylie loves the windchimes that Neil's uncle Robin, who passed away last year, had made us for our wedding. She just stares and smiles at them. We read books outside today, played w/ the dogs, ate some more, and she actually took a real nap this afternoon. We went and watched Auntie Kari's softball game and then Kylie spent the evening w/ Grandma & Grandpa so I could go out w/ my friend Nicole. We went looking for baby stuff for Baby Noah. It feels like just yesterday we were getting her room together, wondering if she was a boy or girl and trying to decide how we were ever going to be parents. Kylie is growing up so fast! She has converted to a regular "big girl" carseat, (and do I mean big- it goes up to 100lbs, so I figure we should be safe until her 1st b-day!), and she used a sippy cup by herself for the first time today! (Still needs a little practice) She had 1, maybe 2 seizures at Grandma's tonight and is still awake as we speak, so there is a possibility for more. We notice she seems to have them in her exersaucer and jumper-roo. I don't know if it the motion or what but it is not looking promising when walking time comes around. Kylie also got to spend time w/ her Uncle Ben and g-friend Laura tonight. Neil is working this weekend, so we are going to have lots of quality girl time together. I need to do some major spring cleaning this weekend, especially since Bailey the bandit struck again. This time she ate 2 fruit cups, a half box of granola bars, and a box of wheat thins. I know, I know. Childproof! We did get Kylie a swing for the back yard so we are going to set that up tomorrow. She loves being outside! Peace, love and prayers- Maria, Neil and Kylie Jo

Thursday, April 7, 2005 8:11 PM CDT

An ear infection! That was our diagnosis for the day. This kid really has been dealt a crummy deck of cards. I'm glad she has one though, as we now know why she has been so crabby, thirsty and waking up at night like a newborn! We started a new antibiotic today and are crossing our fingers that she is not allergic to it. I forsee tubes in our future. We met w/ Dr frost today and are feeling much better about things. First, he showed us her actual MRI. It was so facinating to see our baby's actual brain, execpt when he pointed out the rather large looking gray tubur, which was on the right frontal lobe, not the left as we were told. He thinks this is where the majority of her seizures are coming from. The other tubor is pretty invisable to the naked eye, but it is there. They will do a follow up MRI in 6mo, to see if any other tubors have shown up. We are staying on the topamax and increasing the dose over the next 2 mondays, unless her seizures get worse. She had 4 seizures yesterday, but no seizures between 445pm yesterday to 1030am today. Big progress! So far today, (knock on wood), she has only had 2. If the medications do not work, we would next try the ketogenic diet and surgery as a last option. The little peanut actually decided to demonstrate for Dr Frost, who agreed they are complex partial seizures, not infantile spasms. He said Kylie did have some firings on her EEG that looked like they were going to turn into infantile spasms but never did. The spasms tend to rear their ugly heads between 4-6mo of age. She is at risk for them but hopefully we won't get there. Dr Frost she is so far developing normally for her age, which is very encouraging. He said that the kids he sees with severe mental retardation and severe developmental difficulties can already be seen by Kylie's age. He said for the time being, Kylie has a very mild case of TS and should do ok if we can get her seizures under control. I told him everything that was said to us in the hospital and he said that "why would they tell you that? They are not her doctor. My goal is for Kylie to be seizure free." I am liking him much better these days! I also asked him if he was planning on retiring anytime soo and he said "not even if I win the lottery." Let's just pray for his health! Kylie also demonstrated her ever charming reflux for him. After that, they had the ped doc increase her prevacid to 2x a day. We will follow up w/ him in May. They are also referring us to a cardiologist, which aparently should of been done at our last hospital stay. Totally unrelated to TS, Kylie has a small hole in her heart. Hopefully it will close by 9mo, but he said it could cause her problems in the future. They could probably close it through a cath. I'm sure my insurance company is just loving our family! We also discussed the genetic testing that we had done. They were checking for the TS1 or TS2 gene, which would be a confirming diagnosis of TS. If they don't find it, it may just be that it is on another gene that has not yet been identified. Of they do find it, then it means it could be from Neil or I. They would send off our blood to see if one of us have it. If we don't, it means that Kylie just had some bad luck when I was pregnant w/ her. If one of us does have it, then our siblings would have to be tested, (not saying that they would have it but possibly that it was a new mutation when one of our mom's were pregnant.) Hopefully this won't be in the family gene pool. If it's not genetic and only a new mutation, then only Kylie's future children would be at risk. Anyways, what a mouth full. We have an appointment for next thursday for Kylie to get her 6mo shots and to have blood drawn to check her topamax level. I took a leave of absence until next saturday. Things are slowly feeling like they are getting back to normal, except for poor Neil sleeping on the floor at the end of the bed. He has been so restless he has been disturbing his girls' beauty sleep. Hopefully the dogs will start to feel better soon. Why we ere gone for 2 hours today, Bailey (the golden), opened a box of PopSecret popcorn, smeared the butter and grease all over the carpet and left kernals all over the house. Then she ate another bottle of TUMS (she has her first bottle over the weekend), the started eating a box of Imodium AD, (I wonder why). Buster, (the bulldog), as usual, broke down the baby gate, got up on the leather couch, where he proceeded to leave a pile of drool and dog hair, which is ok, because the cat had earlier puked up a huge pie of kernals. Easy to clean up all at once. Lady Sadie (the shih tzu) decided it would add to the excitement and be most proper, to pee infront of the fireplace. What else could we do but laugh? Apparently we need to baby proof a little better before Kylie adds to the chaos. Well, I need to go clean up some of the mess. Miss Kylie and I will be up late tonight after our 3 hour nap this afternoon. Love to you all- Maria, Neil and Kylie Jo

Wednesday, April 6, 2005 2:46 PM CDT

Hey everyone. hopefully I didn't scare everyone too bad w/ yesterday's update. We left the hospital yesterday because basicly, they told us it was pretty hopeless. Kylie's seizure's are going to be very hard to control, if they even can be. She had 7 seizures mon, 5 yesterday and so far 2 today. She may have had more last night, as she was up for most of the night, screaming and wanting to drink. She has drank 30oz by noon today. I called Dr Frost's office and they are going to check her for an ear infection tomorrow. We will also be going over her MRI, EEG and talk about our plan of action. They may adjust her meds again. We are on her 2nd med now, which really doesn't seem to be working. Dr Ritter said once we hit 3 or 4 meds w/o seizure relief, most likely the meds won't work. We are also going to be discussing surgery to remove the tubors. She has one in the left frontal lobe that seems to be causing the majority of her seizures. The other is in her right temporal lobe. As her brain develops, more tubors may appear. They will not be new tubors but ones that were too small to appear on her MRI. PT saw her yesterday too and said she has a mild case of torridcolli (sp?) of her right side. Her neck/shoulder muscles are slightly more rigid than they should be and we need to do exercises to loosen them up. Another reason why a baby should not be in the birth canal for 3 weeks. Although I am at odds with God at the present time, I am putting my entire world in Dr Frost's hands. Pray that the Lord will guide him in caring for Kylie. Everyone keeps asking me what they can do for us and I guess the only answer is prayer. The rest is up to Dr Frost and Kylie. Thank you to everyone who has been dealing with this with us, especially to my mom, who has spent every available moment at our sides, to the girls at Maria's work- all of the visits meant so much. Sarah B- we listened to that CD everyday. It is so calming for Kylie. Nicole- the food, love and support is so much appreciated, Bridget- you got me hooked on a new food! To everyone else, for the countless email updates, phone calls, cards, etc., it is apprecaited much more than you will ever realize. To Lavonne, Jim and Baby Elaina- we are so fortunate to have you come into our lives, although I wish it could have happened in a different way. You both are such a huge support to us and I am hoping and praying that our girls will be able to grow up and be ok. We see Dr. Frost tomorrow at 11:30 am so I will update after the appointment. Tonight I pray for peace for Kylie. And Neil, thank you so, so, so much for letting me sleep til noon! I needed that so much more than you will ever realize. When we said our vows on Sep 20, 2004, never did I realize how much our lives would change a year later on Sep 20, 2005 when Kylie made her appearance in our lives. Our lives have changed a little bit more each day with her and I want to thank you for being the dad you are to her. A lot men would run when they realize what we are going through but you have exemplified every day why I married you. Even though I don't say it everyday, you are the reason why I am able to get through this. I love you so much. Prayers, love and peace to you all- Maria, Neil and Kylie Jo

Tuesday, April 5, 2005 5:55 PM CDT

We are finally home. We did not get good news today and I am a little too upset to write. We see Dr. Frost on thursday. I will update more when I can. -Maria

Monday, April 4, 2005 5:25 PM CDT

Still here. Kylie has had 5 seizures today and we still have hours left to go until bedtime. The increased her Topamax to 30mg three times a day. I'm so frustrated because to me, the med is obviously not working. Dr Frost is still in London so we saw Dr Ritter instead. He said it takes awhile to get to a therapeutic level, but come on. She has been on it for almost a week and is still having quite a few seizures. On a positive note, the EEG wires came off today so Kylie is much more comfortable. Dr Ritter did tell me that the tubors are located on her left frontal lobe and right occipital lobe. I did a lot of research on seizures last night, most of which was reassuring to me. It said that seizures can last an hour and still have a rare chance of causing brain damage, (although we have been down that rare road before). The damage can come from the underlying cause of the seizures. We were sad to see our roommate, 6mo Elina, go home today but are so happy for her family. She became Kylie's good buddy here and it was so nice to talk with her parents and be able to relate with someone going through somewhat of the same thing. Neil went to work today so I stayed w/ Kylie. I am so bored out of my mind, although Kylie does try & spice things up a bit when she throws a seizure in. Who knows when we are ever going to leave. Kylie decided to party at 3:30 am last night and had a rough time sleeping. I had 3 1/2 hrs of sleep so I am tired! My mom just got here so Neil and I are going to grab a bite to eat and try and enjoy the weather, which I hear is gorgous. Keep the prayers coming! Also, kylie gets to start PT/OT while we are here because all the progress we have made is in the toilet. More tomorrow- Love Maria, Neil and Kylie

Sunday, April 3, 2005 4:36 PM CDT

Hey everyone. Still here. So far only one seizure today, a quick one this morning. We are still hooked up to the EEG, maybe getting unhooked tomorrow. The doc thinks the am seizures are because her levels get too low over the night. She seems to have them 1/2 hour after taking her meds. She got her last dose of Keppra this morning, so we will see how she does off of it. The neuro doc did say Kylie is having different types of seizures, so it is tricky getting the right meds. I ended up working 7pm-730am last night. They were short staffed and I felt guilty leaving but it worked out pretty well. I made frequent checks on Kylie throughout the night. She did have one seizure at 730pm. She does not have them in her sleep so that is reassuring. Check out the new pictures of Kylie in the photo album. She looks so cute hooked up to her electrodes. Hopefully we won't have anything to update about tomorrow. Love to you all- Maria, Neil and Kylie

Saturday, April 2, 2005 4:34 PM CST

*** quick update Sunday 11:06 a.m. This is grandma Karen. Maria offered to work last night on her floor for a few hours. They were short handed so she ended up working 7p.m.-7 a.m. Kylie had another quick seizure last night around 7:30 and one this a.m around 8:30. I stayed here last night with her. Maria is sleeping and we are waiting to see the Neurologist. She will most like update later. Thanks for all of your prayers and support. Keep it coming!

We are still in the hospital and are bored out of our minds. Kylie went from 4:00pm yesterday to 9:30am this morning without a seizure. She had one at 9:30 am and then 2 around 2:30pm today. The techs said the last 2 seizures did not show up on her EEG. Who knows what that means. The nurse was in the room at the time and agreed that she was definately having a seizure. Our discharge date keeps getting farther and farther away. I am actually going to work tonight from 7-11pm, just to get a break. It will be a nice change of scenery, even though it's still a hospital. We had some visitors today, which was nice to break up the day. If anyone does want to visit, give us a call first to make sure we aren't out wandering. #651-241-7914. We miss our poor dogs but Sue is taking good care of everybody. Thank you so much! It's so nice to not have to worry about them and know that they are getting extra special attention! The other moms her have been such good support. Also thank you to everyone who has been checking on us and writing on our webpage. It's a nice break in the day to read the emails from everyone. My mom went to the TSC meeting today and has all of the pledge sheets. Please contact her at 651-488-3262 (Karen Ueland). Or get a hold of Neil or I. There is going to be breakfast prior to the walk and a BBQ after, with a band. It should be fun. Hopefully we won't be stuck here then. Well, thany you all for your love and support. Love Maria, Neil and Kylie Jo

Friday, April 1, 2005 3:48 PM CST

Just a quick update. Neil and I snuck home for showers and left a very crabby baby with her Uncle Ben. We will be in the hospital at least through the weekend. She will continue to be connected to the EEG at least for the next 24hrs. We saw Dr. Frost today and her assured us that she is not having infantile spasms. Her head circomfrence is just fine and there is no reason to believe she has fluid building up. I agree with him. There were too many emotions flying last night when Kylie had her longest seizure. We are just fighting the battle of trying to get her on the right meds so she will not have anymore seizures. He thinks that by giving her a big dose of Keppra last Friday is what is causing all of these seizures that she is having now. He said it is rare but has happened before. They are slowly weaning the Keppra and are giving her a larger dose of topamax tonight. She needs to be seizure free for at least 24 hours, if not more, before we get to go home. If anyone needs to get ahold of us, we are in room 7946 on Children's Ped Epilepsy Unit. Neil has found a 16 yo Nintendo buddy so he is having a great time. The kids are truely amazing up there. There is so much suffering but the kids are so brave. I will try and update later, (hopefully with NO news). Love Maria, Neil and Kylie

Thursday, March 31, 2005 10:42 PM CST

We are still in the hospital and having a horrible time. the medication they started does not seem to be working. Kylie had her longest seizure of her life tonight, lasting 8 minutes. Each day they seem to be getting longer. Who knows what tomorrow will bring. I pray, pray , pray for no brain damage and for my little peanut to wake up in the morning and be ok. They had to give her valium tonight to stop the seizure, on top of her other seizure meds. I pleaded with God tonight that I will gladly give up all I have, just help the seizures to stop. I know that you can't bargin with God, but with my already waivering faith, I really don't know what else to do. I am going to ask the doctor for a repeat MRI tomorrow, in case there is fluid building up or with the chance that they made the wrong diagnosis in the first place. She doesn't fit any of the other criteria of TSC and they had three different neurologists look at her MRI in the first place to come up with this diagnosis. There is another 6mo baby girl here who is also having seizures, except hers started after her 4 month vaccinations. They are having a hard time controlling her seizures w/ meds. It makes me nervous because Kylie's first seizures also started right after her 4mo shots. What if the seizures are really from her shots and it was just by chance they discovered these tubors. A long shot, I know. But I am completely freaked out right now and I am at the end of my rope. I have really gotten a lot of support from our roommate's mom. Her daughter has had unexplained seizures since 1yr and she is now 11. I guess that we really have joined "the family". I pray for no exciting updates tomorrow. Please keep us in your prayers. Love Maria, neil and Kylie

Wednesday, March 30, 2005 4:34 PM CST

Everybody keeps telling me that God will not give me more than I can handle. Well, here's a shout out to God- Enough! You are slowly crossing that line and I would like a break! Kylie took her first ambulance ride to Children's Hospital today. She had 4 seizures within 10 minutes, the last being a grand mal. Grandma Karen gave Kylie her diastat, which is a medication given rectally to stop the seizure. We then were seen at the neurologist's office, where they changed the medication she is on to Topamax. She will stay on the Keppra for a few days, while starting the topamax. They said the increase in seizures could be a reaction to the keppra itself or the reason could be unknown. We will see Dr. Frost on Friday to go over everything in more detail. I am just so tired and frustrated with all of this. I want to be able to go away for the weekend w/ Neil without freaking out that she is seizing while we are away. Heck, I want to go out for more than an hour without getting that dreaded phone call. I want to be able to put my baby to sleep at night without worrying if she will wake up in the morning. I want to be able to go on vacation this summer without worrying that we are too far away from a hospital. I want to stay home with her more without worring about how we are going to pay the bills. I want a life that amounts to some sort of normalacy. Is that really asking too much? Is that ever going to happen? Probably not. We are always going to be the parents of a child with special needs and no part of our lives are ever going to be "normal" again. While I was waiting for the ambulance to pull up to Children's today, I sat and watched an extremely pregnant woman, who looked like a drug addict, haul her 2 year old off to the street corner. She sat chain smoking her cigarettes down, blowing in the kid's face. It just made me so mad. Neither of those kids even have a chance, yet they will probably both be healthy. Yet, I did everything by the book- no drugs, alcohol, smoking while prgnant. I ate right, exercised, didn't have a lot of stress. I didn't so much as take a tylenol while I was pregnant, yet my child has problems far more severe than low birth weight. Somehow it just doesn't seem fair. I'm sorry that I seem so bitter right now. I just needed to vent a bit. I just want to be able to meet people or catch up with old friends and say, "This is my daughter Kylie, who is 6mo old and wonderful". Period. I don't want to have to explain to everyone I meet about TSC. But if I don't, I feel like I'm lying. God, if you are out there, anytime you would like to give us a break, we would be more than happy to except. Love Maria, Neil and Kylie
***Update: We were admitted last night after Kylie had 4 more seizures and taking more diastat. They hooked her up to the EEG, where they saw her have 1 seizure last night and 4 this morning. Dr. Frost agrees that they are different than her previous seizures and is increasing the amount of topamax to 15mg 3x a day. I pray to God this works. We will be here at least overnight and they will reasses in the morning. Sorry I was so crabby yesterday. I feel a little better today, now that they are actually doing something about her seizures. I am taking a leave from work for a week or two to try and get things under control. I also need a mental break. Thank you for your continued prayers. We really appreciate it! Love the Gibbons' family

Tuesday, March 29, 2005 6:47 PM CST

Hey everyone. I guess it is my turn to be miserable. I have been in bed all day with the flu, thanks to my darling daughter. =) We saw the pedeitrician yesterday for Kylie's 6 month check-up and she checked out perfectly! She is developing on track and her tone is better. I guess those exercises are paying off! She did have 4 seizures yesterday and they seem to be at times the tonic seizures, (which we really don't want). Today has been much better with one small, quick focal seizure. The doctor did say that she will probably have seizures when she gets sick, as her ability to keep the seizures at bay drops dramatically with illness. The problem is that the medication she is on lowers her immune system. We are trying to figure out a way to keep her out of daycare as much as possible, while she is still little. The doctor said that her immune system should be better around age 2. We finally have a neurologist appointment for Friday at 1030 am. We are very eager to fid out what the plan is! I think it will help us to all feel better if we have a plan in place. The occupational therapist is going to come out for a visit April 12 and they are having the techers come to evaluate her on April 21st. Hopefully she will pass with flying colors. My mom has been working hard on the TSC walk, which will take place on Sunday, May 22nd. Check in time is 9am. I think a bunch of us are going to meet at my parents house that morning (which is a few blocks from the lake) and walk from there is anyone would like to join us. We are thinking of doing some sort of get together after. If anyone would like to join us or sponser us, please let me know. All of the money donated will go to the TSC Alliance Foundation and will be put towards research. By the way, here are Kylie's stats from the doctor visit: 19lb, 3oz; 27 1/2 inches tall; head 18inches. Big heads do run in our family, but they will be watching her head closely, as a big growth spurt there could mean fluid is starting to build, causing the need for a shunt. The tubors are located close to the ventricles, so we are praying extra hard none of that will be in our future. Thank you for your continued prayers. Love Maria, Neil and Kylie

Monday, March 28, 2005 3:51 AM CST

Happy Easter everyone! We had a pretty crappy weekend. Kylie had 5 seizures on Friday and then started vomitting from about 6pm-2am. She woke up w/ a temp of 101 and was pretty lethargic all day and night. We took her into the ped sat am, where we were told she just had the flu. The diarrhea started when we got home. She had 3 seizures on saturday, and 1 or 2 on sunday. The doctor said since her immune system is somewhat suppressed, we may be seeing seizures everytime that she is sick. The key is to find a med that will protect her from seizures no matter if she is sick. It's so frustrating. She had been doing so well and watching her seize just breaks my heart. On a positive note, the doctor said that brain damage doesn't occur unless she seizes for 20-30 minutes. Kylie had her longest seizure on sat, which lasted 20 seconds. My mom spent the night friday, so it was nice having someone to sit up with (Neil worked sat morning). Our neurologist was actually on call this weekend so we spoke to him many times. We have to be very careful with her being exposed to germs, which is pretty unrealistic because she is in daycare. Neil and I are going to try and work something out with our hours so she can be in daycare as little as possible, (even though she is getting the best care possible there!) Basicly, we need to be home with her more often and we need to find a way to accomplish that. We see the ped doc at 10 am today for Kylie's 6mo check-up. I'm assuming she will not be getting her shots now. I will update later on today. Keep the prayers coming. Love Maria, Neil & Kylie

Friday, March 25, 2005 4:56 PM CST

Today is a crappy day. Kylie has had 2 seizures, the first around noon, where she went off into a stare, while blinking rythmnic motion. I called the doctor, who said to monitor her and call w/ any more seziures. At about 4pm, she had another one, with her eyes deviating back and forth. Neither lasted more than 10 seconds. I called the doc again and they are increasing her Keppra to 250mg in the am and 250 mg in the pm. If she continues to have seizures, they will take her off the keppra and start her on topamax. The only major side effect that they see w/ the topamax is a decrease in appetite, which I guess in Kylie's case wouldn't be such a bad thing! I am really praying to keep her on the keppra, as it is the "cleanest" drug and the one we feel most comfortable with. I am just so completely frustrated. She has been doing so well since we have been out of the hospital and having a setback like this is devastating. We almosst forget anything is wrong with her because she is so sweet and so normal. Every seizure is just a reminder of the lifetime of frustration and saddness in our future.I am physically and emotionally exhausted. I have worked nights all week and have 2 1/2 hours of sleep today and then I work again at 11pm. Neil works tomorrow so I have the baby all day, then we have a wedding reception at night, so I will try and catch a few naps when (if) Kylie naps tomorrow. The reason her keppra was decreased last time is because she would say awake from 6am-11pm, with a 40 min nap in between. We are spending Easter w/ my family and the I work that night. Mon we see the ped. for her 6mo check-up and for shots =(. I work days next week so hopefully I won't be as tired. On a side note, apparently Kylie is a minor celebrity. Her story was read on the 93x morning show and there is a link to her website on their home page. I wish we would have heard it! Things are really coming together for the golf tourney on sat Aug 20, 1pm @ Como golf coarse. We are also planning our TSC walk, which is coming up in May. We hope to see many of you there! I will update with details after the meeting next sat. Please keep in your prayers a friend's family of mine. Her 6 year old was bit by a dog, in the face, requiring 30 stiches and plastic surgery. Also please contine to pray for Kylie's healing and for the keppra to work. May you all have a wonderous and joyful Easter. On this occassion of miracles, I am hoping for a little extra one to come our way. Love to you all- Maria, Neil and Kylie

Wednesday, March 23, 2005 6:32 PM CST

Just a quick update. The golf tourney we are putting on to benefit TSC will be held Saturday, August 20th at Como Golf Course. We will let you know further details when they become available. We still don't have an appointment to see the neurologist. I thought Kylie was maybe having a little seizure a little while ago but it only lasted for a few seconds so it is hard to tell. Her legs are getting so strong! She is really starting to bear some weight on them, (and is there ever alot of weight! =)) My mom said Kylie's shoulders seemed sore today. She screamed when they put her shirt on. I guess we have been doing too much exercising! She still hasn't rolled over since last week so I'm wondering if it was just a fluke. Hopefully she will do it again soon. If anyone is planning on doing the TSC walk on Sunday, May 22nd, please let my mom or I know. She is going to a team leader meeting next saturday and we are trying to get our team together. Thank you! Love Maria, Neil and Kylie

Tuesday, March 22, 2005 9:16 PM CST

Hey everybody. Just a quick update before I get ready for work. Our neuro appointment was cancelled about 20 minutes before we walked out the door. The doctor was sick but hopefully we can get in soon. Very frustrating- we have so many questions! In order to get money for TSC research, we need to contact our senators by next thursday, March 31st. Please contact Senator Norm Coleman or Senator Mark Dayton, (or both!), and ask them to contact Brittany Espy @ 202-224-3643 in Senator Iskson's office, to sign the Dear Colleague letter. The Congress people need to call Lynn Wentworth @ 202-226-5441. Unless more money is put towards research of TSC, it is unlikely that there will be a cure in the near future. And we want a cure, or at the very least, some sort of treatment! Neil and some buddies are putting a golf tourney together this summer, with the proceeds going to the TSC research fund. The tenative date is Aug 20 or 21st. We are looking for a course that will be able to accommodate us. We are trying to get an estimate of how many people would be interested in playing. If you would like to play, please email me at riau2@aol.com. Kylie has been doing fabulous this week. She took a 2 1/2 hr nap today, (hurrah!), and yesterday went to sleep in the crib, (double hurrah!). We found that she is allergic to either grapes or plums, as she had a rash all over her body after eating them. She is keeping us entertained w/ her constant babble and giggles. We have been work really hard at her siiting up by herself and putting weight on her legs. We have a long way to go but she is doing much better. My brother Andy survived his training, loosing 15lbs in the process. We can't wait to see him at his wedding in May. I found out that my biopsey was precancerous but that they got it all so I don't need to worry. Yeah! Please continue to pray for Kylie's healing. Hopefully we get into the doctor's office soon! Kylie has her 6mo check-up on Monday, (more shots =( ) and we are praying all goes well there. We are nervous, as all of this began after she got her 4mo shots. I know there is no relation, but it still makes us worry. We will update again later. Love to you all- Maria, Neil and Kylie

Monday, March 21, 2005 8:48 PM CST

Hey everyone. Sorry we didn't write over the weekend but we were busy! Saturday Neil and I spent the day cleaning out the basement. A certain little someone wasn't cooperating so her Auntie Kari came to play w/ her. Thank you Kari! Our cleaning progressed long into the evening so my parents took Kylie for a couple hours and then Neil and I went out to dinner! (Our first night out alone since we had our fun little trip to Children's). Sunday we went to church. Kylie was such a good girl! (Usually we make a few trips to the crying room). She loved pointing at the stained glass windows and talking to the people around us. Then I went out to brunch w/ my girlfriends and then we went over to my parents to help them clean out the attic. Kylie turned 6 months old yesterday. Happy day baby girl! It seems like just yesterday I found out that I was pregnant w/ her. It was the happiest, yet most scarey day of my life, just like every day w/ her is. =) And what a ride she has taken us on. For all of the scarey moments we have had with her, they have made me realize how precious life really is and that we can't take a single moment of it for granted. We are praying that the next 6 months brings us good health and many happy days. We are praying that Kylie will continue to meet her milestones. We have been working hard all weekend on strengthing her muscles. We were supposed t update the website with new pictures but haven't had a chance to yet. Today we got Kylie an Easter dress. Very cute, but white. No carrots for her this weekend. Tomorrow we go to the neurologist, at 2:30. We will update when we get back. Pray for good news. Thank you all who have signed our guestbook. I plan on printing them off at some point and will put them in her scrapbook. I'm going to go and try to update the pictures now. Love Maria, Neil and Kylie Jo

Friday, March 18, 2005 5:45 PM CST

Happy snow day! Kylie and I spent most of the day trying to stay on the slippery road. This morning, the occupational therapist came to assess Kylie. She thought she is doing very well but will qualify for regular therapy just based on her diagnosis. She agrees that Kylie is "slightly low toned" so we will be doing lots of exercise to strengthen our girl up. The doctor said she could be lower toned from TSC or just from being fat, (we will go with the latter!) One big milestone- Kylie rolled over! She has been trying to for the past week or so and finally did so when she was on my parents dining room table- don't worry, she did not fall off. She did it again this morning, only she can't quite get her one arm out from underneath her. The therapist and a teacher are going to come out in a few weeks and conduct the Bradley(?) Skills Assessment test on Kylie, which evaluates how she interacts w/ others, her verbal skills, her physical skills, etc. Depending on how she does, it will make her available for different programs. Every 6 months, they will give us goals to work on for the next 6 months. Our goal right now is to stay fitting in her 12-18mo clothing for at least a few more months. She is growing(expanding) like a weed. After the therapist left, we went to visit Nikki and so to be Baby Noah. Then, we went and met my friend Alicia and Kylie's new 7week old friend Lilyanna. The girls snoozed through lunch so we got to catch up. We plan on spending the weekend at home. I'm going to work on Kylie's scrapbook and we are going to work on getting flyers made for the TSC walk. We go to the neurologist on Tuesday. Hopefully we will hear from Andy tonight or tomorrow. We are hoping he surived "survival training"! We are also going to try and update Kylie's pictures on this site so everyone can see how cute she is getting. Love to you all- Maria, Neil and Kylie

Wednesday, March 16, 2005 2:11 PM CST

As I am writing this, Kylie is having an absolute fit. She doesn't understand that it is ok to take a nap in a crib. She wants to be held to sleep or have you sleep right next to her, (thank you Neil). She has never been this bad about napping. Anyways, her rash is about gone and this afternoon, she attempted to roll over! She couldn't quite get her big thighs to totally coroperate. Hopefully the time will come soon. She is doing much better w/ tummy time too. She did almost 10 minutes today, (unheard of in this house). Last night Kylie and I went out to dinner w/ my parents & sister, (Neil works late this week), and we stopped out at the mall after. My mom is always good for a laugh- this time, she tried to go up the escalator w/ the stroller, (we had the good sense to take Kylie out first- I'll explain in a minute), but she got stuck. So she then folded the sroller up and handed be the carseat part. She attempted to go up again, where this time the stroller got stuck but she kept going up, almost under the stroller! Both her shoes came off and she's yelling, "I'm falling! I'm falling". By this time we are all in hysterics, yet hoping her ankle doesn't break. In the mean time, I throw the (empty) carseat and grab my mom from behind, while this poor bystander behind us gasps and runs to check under the carseat - lady, I would not throw my kid! Anyways, earlier in the day, I went for a walk w/ my neighbor Sue, her dog, 2 of my dogs, and Kylie. Moms- always buckle your kids in their strollers! I'm so glad I did. We had only walked about 50 feet when a guys and his dog come walking by. There goes Buster, ( my 85lb+ bulldog), clips the front of the stroller, which flips upside down. Kylie was dangling upside down, her face about 1 inch from the pavement. Buster is now banned from walking with the stroller. Kylie didn't even cry. After the shock wore off that I almost further damagaged my child's brain, I flipped her upright and she laughs! I guess Valleyfair will be in our future. Anyhow, tonight Kylie is going to hangout w/ Auntie Kari, while my mom, Kristi, and Grandma Ueland go visit the new addition to the family, Ben Peterson. He was born on Friday to my cousin Michelle and her husband Doug. Congrats guys! Kylie is excited to have someone close in age to her in the family. I work tomorrow so I will update in the afternoon. Love Maria, Neil and Kylie ps Good luck tomorrow w/ Kylie, Mom. She is still crying.

Tuesday, March 15, 2005 5:36 AM CST

Good morning. I worked 12 hour night shift over the weekend so I didn't get a chance to update. Kylie spent the weekend with Grandma & Grandpa. Thank you both, (Grandma), for getting up at the crack of dawn with her. Friday morning Kylie finished her amoxicillian, when I noticed she had a rash all over her body. By Saturday, it was so bad you could barely see any skin that was unaffected. On Saturday we went to Andrea's, (Andy's fiance), wedding shower. Kylie had a great time smiling and flirting with everyone. Thus week I only work Thursday so kylie and I plan on lots of cuddling. Friday the occupational therapist is coming out to evaluate Kylie. I'm hoping she doesn't find anything to work with, but if she does, I'm glad we are starting early. Next week we are going to the neurologist, where we are going to find out how bad things really are. Dr. Frost couldn't evaluate Kylie when we were in the hospital because she was so drugged up. We are praying for no new bad news. Also keep my brother Andy in your prayers. He is doing his survival training for the the next week. They dropped him and a bunch of other soilders off in the woods, each with a bottle of water and water purification tablets. That's it. They have to find their own food and shelter. The forcast is showing storms, so he must be having a blast! Anyways, thank you all for the prayers and keep them coming! Love to you all- Maria, Neil and Kylie

Friday, March 11, 2005 9:39 AM CST

This was read at my cousin Maddie's funeral and I would like to share it, as it somehow now pertains to my family:

"Welcome To Holland"
I am often asked to describe the experience of raising a child with a disability- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this..........

When you're going to have a baby, it's like planning a fabulous trip- to Italy. You buy a bunch of guide books and make your wounderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!" you say. "What do you mean Holland??" I signed up for Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. they've landed in Holland and you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you never would have met.

It's just a different place. It's slower-paced than Italy, less flashy the Italy. But after you've been there for a while and you catch you breath, you look around...and you begin to notice that Holland has windmills...and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wounderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very, very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things... about Holland.
- by Emily Perl Kingsley

I was planning on taking Kylie to daycare today so I could sleep before work tonight, but now she has a "viral rash", spread throughout her entire except her face. I swear, it's one thing after the next. She woke up frequently throughout the night but I think that was associated w/ her gas problems. =) Wed. night us girls went out shopping. We didn't find an Easter dress but we did come back w/ plenty of other thing! Bridget came over that night and I would like to thank her for our wonderful talk- it really helped me to put a perspective on a few things. Yesterday Kari and I went to the dermatologist, where I had a few biopsy's done- hopefully nothing to worry about!=) We then went and got lunch and visited w/ Kylie's Great-grandma Ueland. Kylie loved to snuggle up w/ her dog Jake. Last night was pretty low key. Sue visited for a little bit and I spent the entire night balancing the checkbook. Hopefully Kylie's rash will go away soon. If it's not better in 3-5 days, back to the doctor we go. Well, Kylie just fell asleep so I am going to go join her. Love to you all- Maria, Neil & Kylie Jo

Wednesday, March 9, 2005 4:44 PM CST

Well, Kylie is definately back on her sleeping schedule! She napped well for the last three days. Last night she fell asleep at 6:45 pm and slept until 3:30 am today, when she decided to get up and party, (hence the horrible headache I have had all day). She has been in an absolutely great mood lately. She is full of smiles all day and laughs at the drop of a hat. A parent can't ask for a much happier kid. We are all starting to feel better about things too. Kylie is doing so great it's just hard to imagine that anything is wrong. Maybe we are in denial, who knows. She is just loved by so many. She definately takes after her mom in some ways. She is the most vain of any baby I've ever seen. She can be throwing a complete tantrum but put a mirror in front of her and she is all smiles! She bats her eyes and talks to herself. Neil is definately going to need to build us a bigger bathroom as she gets older! I have been having a great week at work so I think that is overall helping the situation. Tonight us girls, (Grandma Karen, Auntie Kari, Kylie and I) are going out to dinner and then shopping for an Easter dress for Kylie. Tomorrow Kari and I are going to the doctor and then to visit Great-grandma Ueland. Kylie can't wait to get big enough to eat her chocolate chip cookies! We have a busy weekend ahead. I work 12 hr night shifts and Neil is on call, so Kylie is staying w/ Grandma & Grandpa. Hopefully she will let them get some sleep! We have a couple of appointments for Kylie towards the end of the month so hopefully all will be calm until then. I feel like the prayers are helping so please keep them coming. We got all of the information about the TSC walk so we will be sending things out within the next few weeks. Love to you all- Maria, Neil and Kylie Jo

Tuesday, March 8, 2005 5:21 AM CST

Good morning. I will write real quick because I have to get ready for work. Kylie had a crabby day at day care yesterday but was all smiles for us last night! And I'm happy to report we have had two days of naps! She is getting stronger on her tummy and was bearing weight for awhile on her legs yesterday. The only thing we've really noticed is that she isn't cooing as much, if at all, like she was before. She smiles and laughs all the time and is now doing this sort of humming thing. Maybe it's her new way to talk. Who knows. I will ask the therapist when she comes next week. We got our hospital bill yesterday, which isn't even the entire bill yet. $29,554. They charged $17,000 for Neil to sleep on the floor! Thank God for good insurance, (we hope!)=). I have a meeting after work about Kylie's insurance so let's hope that goes well. I was a little sad yesterday. I got a medical certificate from Kylie's ped yesterday stating she is medically "disabled", which we all know but was hard to actually see in writing. I did have a great day at work though so there was one bonus for the day. I will try and update when I get home today. Thank you to everyone for the prayers. Love to you all- Maria, Neil and Kylie Jo

Sunday, March 6, 2005 7:58 PM CST

Kylie took naps today! She slept for an hour this morning, then we walked around Como lake, where she dozed for a bit, then for about an hour at Grandma Karen's. It's amazing the things we are thankful for these days. Last night we visited some friends in Woodbury, where Kylie met 9mo old Garrett. She was facinated by him. She really hasn't seen another baby close up before and it was fun to watch the expressions they made to one another. Today we met Neil's sister for the first time. She is a very smart, mature and beautiful person and it was great to get to know her. We are planning another meeting so she can meet Kylie, (Kylie is banned from restraunts for the time being, after the Friday incident). Hopefully Kylie will continue w/ her naps this week so we don't have to adjust her meds. I work a lot this week so we are praying for a healthy week! Thank you so much to my wonderful husband, who got up w/ Kylie this morning so I could sleep in (until 10:30!!!) - the joys of no longer breastfeeding. I haven't slept in that late since about this time last year. It is truely amazing to see all the love and support we are getting through this whole process. We love you all so much! We are working on plans for the TSC walk in May and will send out more details as they are finalized. Neil is also planning to hold a charity golf tourney this summer if anyone is interested. Please continue to keep Kylie in your prayers. Love to you all- Maria, Neil and Kylie Jo

Saturday, March 5, 2005 5:44 PM CST

Happy Saturday! I didn't get a chance to write yesterday. I worked the night shift thurs and by the time I got home fri morning, it was close to 10 am. We tried really hard to nap yesterday but Kylie was much too happy and playful to nap. She slept for about 30 min the whole day! I didn't get to bed until 9 pm yesterday. We went and bought life insurance yesterday and then had dinner w/ Nicole and Jay (and the soon to arrive baby Noah!) Kylie was a doll all day until the food arrived, when she decided to show the entire restraunt how well her lungs work. Poor Neil sat in the truck w/ her until I was done eating and we had to box up his to go. We had visits from Uncle Ben, Auntie Kari and Ben's friend Ryan yesterday. I woke up w/ a horrible head cold this morning, which seems a little better now. Candy and I spent the morning collects gently used baby items, along w/ some new things, for the girl that we used to work w/. We got quite a haul for pretty cheap. Thank you to my parents who helped put the crib up and for adding a few donations! The babies are so cute and although they are 6 mo, weigh about what Kylie did at 2 mo! We sure love our swimsuit model body! Neil and I have been feeling like we have been neglecting our poor dogs so we decided to take them, and Kylie, to the dog park. Big mistake! It was super muddy and mucky. Sadie was a snob and insisted on being carried the whole time, Buster tried to hump anything that came in a three foot radius, and the three of them stuck together instead of playing w/ other dogs. I guess we will stick to our back yard and neighbor dog AJ. Thank you so much to Linda M, a friend from work, who made the most yummy chocolate cake and lasagna. I feel the pounds slowly creeping back on! We are going to call the neurologist on Mon to have the keppra dose decreased. Kylie is not getting enough sleep during the day. We both need her to nap more! She did really good w/ tummy time today. She is really getting stronger in her back/neck muscles. The OT therapist called yesterday and she is coming out for her first visit on the 18th. I'm hoping she says that Kylie doesn't need any extra help but if she does, I'm glad we are starting early. We are going out to Woodbury tonight so Kylie can play w/ her future boyfriend, Garrett. I'll write more tomorrw. Love to you all- Neil, Maria & Kylie

Thursday, March 3, 2005 8:14 PM CST

Hey everybody. Just a quick note today. I am exhausted and need a quick nap before work. Anyways, I hard sort of a rough night at work and got off late. I stopped at my mom's to check on Kylie, where they think she may have had 2 quick seizures. Needless to say, I didn't get a whole lot of sleep today. The neurologist said to just watch her close. Because I did not see the seizures myself and because my mom and Kristi were not totally sure, we are taking a wait and see approach. If I see any, we will be back in for a med adjustment. She should not be having any seizures. I felt like my heart was sitting in the pit of my stomach all day. I feel guilty being away from her at all and I am so scared to see what the future will bring. I'm trying really hard to stay positive but it is so hard. I just wish that I could go back a few months ago when I was a normal mom with a normal baby. I feel like I will be crying for the rest of my life. Please keep the prayers coming our way- we need to stay seizure free! Thank you to all of my work family who donated PTO time. I t is very much appreciated! Love to you all- Neil, Maria & Kylie

Wednesday, March 2, 2005 1:15 PM CST

Hey everyone. I just dropped Kylie off at my mom's so I could catch a feel winks so I thought I'd write a bit, (I work nights today & tomorrow). Last night my parents treated us to dinner at Joe's Crab Shack. It was nice to get out and listen to my dad tell softball stories and listen to him and my sister argue over softball. Sure does bring back the memories! Kylie fell asleep during dinner and slept until 8am today. She has been in a great mood too. We did some tummy therapy on the yoga ball, which she really likes. Because she has such a hard time laying flat on her tummy, the ball makes it easier and helps to strengthen her neck and back muscles. Andy's fiance', Andrea, came over for awhile yesterday. She brought some rosaries for my family from Magagori, as well as some holy water from there. I dabbed a bit on Kylie's head. I figure anything is worth a try at this point. Andy's wedding is coming up so soon! We are definately going to go get a pretty party dress for Kylie. We are looking forward to our weekend. Fri night we are going to buy life insurance policies, (fun), then have dinner w/ my friend Alicia, (a friend from college), her husband and 4 week old daughter Lily, (Kylie's only girlfriend! Everyone else has boys!) Saturday is my day of mission. My friend Candy and I are going to be scouring St Paul for any cheap, used baby goods or any household items. Candy and I waitressed together through highschool & college, where we worked w/ this girl who is slight mentally challenged, (she also has epilepsy). To make a long story short, this girl ended up leaving an abusive relationship a few weeks ago and moved into her own place w/ her 6mo old very premature twins. They have absolutely nothing so we are trying to find stuff to outfit her new place. The babies share 1 portacrib and each have a carseat, but that's it. My parents are donanting a crib (thankyou, thankyou!) and if anyone has any old stuff they want to get rid of, please let we know. We would love to take it off your hands. Anyways, I have started doing a little research on TSC. Apparently Neil and I should've been playing the lottery all along because here are the odds of getting this disease: approx. 2 children are born each day w/ this disease. 2 in the world. Seriously, I think our chances of being hit by lightning would be higher. The stats say about 50,000 people in the US have this and about 1 million people worldwide. On March 16, family advocates for TSC will be traveling to Washington DC to lobby members of Congress to try and secure money towards research of TSC. The Alliance is asking us, and we are asking you, to contact our two Senators from MN and our House Rep and ask them to increase federal funding for TSC research. Right now there is no cure for this disease but hopefully by the time we are old enough to be grandparents there will be. Check out the TS Alliance web site at www.tsalliance.org for more info. Ok, I'm done w/ my political bit. Again, thank you all for your love and support. Love to you all- Maria, Neil and Kylie Jo

Tuesday, March 1, 2005 12:42 AM CST

Well, I think I'm going to postpone my return to work one more day. We just got back from the doctor and Kylie has her first ear infection, as well as an eye infection in both eyes. No wonder the poor girl has been so crabby. I'm feeling pretty miserable myself. My throat is sore and I feel like my head is full of a ton of bricks. We will now be adding amoxicillion to our ever growing list of medications for Kylie. Our peds doc spoke w/ our neuro doc about Kylie's prognosis. She was wondering if because she has had seizures so young, does that mean she will have a more difficult time later on. The neurologist said that he has seen many kids who have had horrible seizures early on and turn out completely normal. It's good we did catch Kylie's seizures early. Hopefully they won't progress to the horrible type. She has not had any further seizures since starting her meds. I'm going to try and catch a nap. I'll update later. Love Maria

Monday, February 28, 2005 9:35 PM CST

Just a quick update. Kylie slept for most of the day today and was very fussy when she was awake, which is totally unlike her. I spoke to her pediatrican today and she wants us to come in tomorrow morning. I'm hoping it's just a passing virus, but she does seem to get upset about 30-45 minutes after taking her Keppra. I'm really hoping to keep her on it, as it helps to protect her brain if she were to have any more seizures. We will never let her take phenobarb again! Hate it! Kylie does light up when her daddy comes home! She smiles for him much more easily than she does for me. =( I guess she is just preparing me for her teenage years. Paybacks, huh mom? I'm also wondering if her tummy could be bothering her. We started her on formula this week and I'm not sure how well she is tolerating it. (Another reason that I am not feeling so hot!) I'm not sure if I mentioned this before, but please keep a friend that we met in the hospital in your prayers. Drew is 17 mo old and was bit by a mosquito last summer, causing him to contract encephilitis. It has caused his poor little body to have tons of seizures, the last ones causing him to go blind. He is having a very difficult time w/ it. His mom is also due to give birth in the next 3 weeks so they are definately going to have their hands full. When I look at all that we have gone through since Kylie has been born, I see all of these other kids who are so much worse off and realize, we really don't have it so bad. We have a beautiful little girl who is so normal in every way that she can be, and a wonderful family and group of friends that will support us and be there for us no matter what the future brings. Love to you all- Maria, Neil & Kylie

Monday, February 28, 2005 1:51 PM CST

I finally got Kylie to settle down so I can finally write for a bit. She has been sleeping a lot today, but when she is awake, she has been super crabby. We did not go to our appointment today. Things are slowly starting to feel somewhat normal again and I do not have room in my heart for any more bad news right now. I think that it would push me over the edge. I am planning on going back to work tomorrow night and would like to go back in a good frame of mind. Her skin will be ckecked by the geneticist in a few months regardless. Anyways, our big trip to MOA for pictures yesterday was a big success. They turned out so cute! They resemble the Anne Geddes pictures. When we get our cd, we will try to post some of them on this site so you all can see them. We had alot of fun. It was so nice to do something "normal" again. When we got home, friends of ours, Danielle & Jacques and their kids, were waiting for us with a wonderful homecooked meal. It was delish! Thank you both (Jacques =)) so much. Grandma Karen, as well as Neil's mom and brother and our neighbor Sue, all came for a visit last night. It was good to catch up w/ everyone. Also thank you to Nicole's mom, Jane, who brought over cookies these afternoon. They are great. I sure am going to pack on the pounds after losing so much in the hospital! Hopefully Kylie won't be too crabby tonight. It's so hard to tell if it's from her meds, her teething, her cold, or a combination of all three. Lots of extra cuddles. Personally, I think she just likes all of this extra attention! Whenever we get a visitor, the tears stops and she turns up the charm. Her reflux does seem a little bit worse though. She is spitting up huge amounts at a time, which seem to land in a large puddle on the floor, (as the nice cleaning lady at the mall found out, when Kylie puked on the carpet right next to her!) I feel like she is falling a little bit behind, as she can not tolerate tummy time and has to spend a lot of time sitting up, all which don't give her a whole lot of time to practice rolling over. Hopefully the home OT/PT will start soon. Some exciting news- We are going to meet Neil's 19 year old sister for the first time this weekend! We are very excited and hope that she will become a part of Kylie's life. Again, thank you all for your prayers. Love to you all, Maria, Neil and Kylie

Sunday, February 27, 2005 8:53 AM CST

Good morning. Kylie had a rough night last night. She cried on/off from 5:30 pm-7:30, then straight through until 9:45. She napped for a total of an hour and a half yesterday. She was just so exhausted, the poor kid. On top of it, she has a cold and is teething. She finally fell asleep around 10 pm and slept through the night! She woke up happy about 7 am, ate, took her meds, and went back to sleep w/ her daddy. Hopefully this means we are starting to get back on track. I still feel like crap though. I think I'm just run down from everthing that's gone on. Grandma Karen visited for a while yesterday and today we, along w/ Aunt Kari, are taking a trip out to MOA to get Kylie's pictures taken. Pray for Kylie to corooperate(sp?). Also pray for our trip to the ped dermatologist tomorrow to result in nothing. I know that they are going to find these spots but it will still be upsetting to have a confirmation of our diagnosis. I talked to our friend Bridget for awhile yesterday and she made me realize, my gut feeling is that Kylie is going to grow up and be just fine. I don't know if it's just denial on my part or what but I honestly feel she's going to be ok. Treating her that way may be a little different. Between us and Grandma Karen, I have a feeling that the poor kid is going to be living in a plastic bubble! Hopefully not though. Good news- my brother Andy passed his check ride. He is now a real, certified helicopter piloet! Now the real worry will start to set in. To celebrate, he drove down to FL, (from AL), to visit Grandma & Grandpa Perlt. Again, thank you all for your support and prayers. Love to you all- Maria, Neil and Kylie Jo

Saturday, February 26, 2005 11:12 AM CST

Good morning from the land of no sleep. Kylie was awake yesterday from 7:30 am- 11:30 pm, w/ 2 20min naps inbetween. Most of the evening we did not hear a peep out of her either. She was just in a daze. The morning she got up at 3:30 am, 4:30 am, 5:30 am, 6:45 am, then ate at 7:30 am and is still going strong. We cut the dose of her morning med at she seems to be a little bit like her old self- lots of smiles, making lots of noise, and her arms and legs are going at full speed. Hopefully she will start napping again at some point or Grandma Karen is going to have her hands full at daycare! Kylie did wake up with what seems like the start of a bad cold - congestion and lots of coughing. My throat is killing me this morning as well, so hopefully we won't need to be quarantined! We had many visitors yesterday- Uncle Ben & his college roommate Andrew, and Ben's girlfriend Laura, who went and got us lunch/dinner- thank you, thank you! Our good friend Jody, who drove me over to Bridgit's house for a quick visit w/ Lucy. And our other good friends, Nicole & Jay, who are expecting a little playmate for Kylie in July, (a boy). Nicole brought us many cards that her 2nd graders made us - super cute. Both of the Grandmas are supposed to visit at some point today. We plan on making a trip to Target and just hang out. Neil and I have spent more time together this past week that we did on our honeymoon! It's so nice to hear from all of you that have written on the website. It makes us realize how lucky we are to have such great family and friends supporting us. We appreciate you all more than words can express. Love to you all- Maria, Neil and Kylie

Friday, February 25, 2005 6:18 PM CST

Hey all. Just a few quick updates. Neil got Kylie to really laugh today. Yeah! I don't know if any of you watched the 10 pm news on channel 4 last night but there was a story about a little girl who happens to have the same neurologist as us. Anyways, his office called this afternoon to check up on us and they said Kylie should be back to her old self by now. Because she isn't, they are going to slowly decrease the dose of Keppra she is on. They said she is getting such a huge dose for such a little body, a med error from the hospital. =( They have to wean her slowly so she doesn't have any seizures. We also have an appointment on Monday w/ a pediatric dermatologist, who will use a special lamp to check out Kylie's skin, to see if she has any spots on her skin. They are looking for patches of skin that are lighter than the rest of her skin. They do think she has one patch on her back, but it's hard to tell because she was blessed w/ her dad's beautiful, transparent Irish skin (thank you Neil!). Lots of sunscreen is in our future. Please pray that they won't find any, as it would seal our diagnosis in stone. Kylie has slept for a total of 40 minutes today, also why they are decreasing her med dose. The poor kiddo looks all strung out when she's awake. We are also going to be getting together w/ our priest, Fr. Sirba, in the near future for some extra blessings. One prayer request that did happen was for our friends' daughter, Lucy, who was seen at Children's for the past few days and has a very good outcome. No seizures and she is going to be just fine. Again, thank you all for your support. Love to you all- Maria, Neil & Kylie Jo

Friday, February 25, 2005 8:47 AM CST

Kylie's cry is different. It's sort of like a weak baby lamb cry. She doesn't smile as easily, hardly ever coos to us and I havn't heard her giggle all week. I hate it. This is probably an effect of the medication. If she isn't herself by Mon., we may go back to the doctor for a med adjustment. They were supposed to start her off at 50 mg of Keppra, then gradually increase her to eventually reach 250mg. There was some miscommunication in the hospital and she ended up starting at 250mg. Hopefully that isn't part of the problem. Kylie is also sleeping a lot less. She napped for a total of 2 hours yesterday and didn't go to bed until 11:30 pm. She starting to be a late night party girl. We were going to try to wean her from sleeping in our room and have her start sleeping in her own room. Instead of sleeping right next to us, she is now sleeping in bed with us.(Which I love, although I can't say the same for Neil!) Kylie has been coughing quite a bit in the mornings, which I'm hoping are not the start of allergies, as the three dogs and cat would not be happy about that. We are trying to find some fun things to do. This weekend we are going to the Mall of America to get Kylie's pictures taken. Neil is returning to work on Mon and I'm trying to brace myself to return on Tues. I think it will be a good distraction and am really hoping that I make it. Again, thank you all for your support. Love to you all. Maria, Neil and Kylie

Thursday, February 24, 2005 3:28 PM CST

Hey everyone. I just got off the phone after making all of Kylie's doctor appointments and after speaking with the county educator, who will be following Kylie for home OT/PT and educational therapies. I was having a pretty good day until then, when I started to realize the enormity of all of this. Our lives are forever changed, regardless if Kylie grows up without problems. I'm just so frustated and so mad and then when I think I'm doing ok, the tears start all over again. I'm so grateful for all of the support everyone has given us. I don't know what Neil and I ever did to deserve such a great community of family and friends. Neil and Kylie let me sleep in until 11:30 am this morning. What a bum I am. She finally laid down for a nap about an hour ago after being up all morning. Actually I think I hear her talking now. My favorite part of the day is when I sleep because each time I close my eyes, I hope to wake up and realize that this is just a bad dream. Then I wake up with this sick feeling in the pit of my stomach and realize it is starting all over again. I am just grateful that Kylie is ours for the time being. How long she will be in our lives I don't know, but as Neil says, as long as she is not in pain, we can handle anything. There are some pictures of Kylie on this website. They are a little large, as we are unsure how to get them any smaller. Also, there is going to be a walk this spring to support TSC if anyone is interested in joining or pledging us. Most of this information that I am getting is second hand, as I still don't have the heart or courage to research any of this on the internet or to join any support groups. All of it seems so discouraging. Please keep friends of ours in your prayers. Their 9 mo old baby, Lucy, has also been having many seizures except that they aren't sure of the cause. She was admitted today to Children's Epileptic Unit, just where we left yesterday. Also keep my brother Andy in your prayers, as he prepares to complete his final check ride tonight. Word is that he will be going to Afganistan in Jan or Feb. I pray to God to keep him safe and to bring healing to Kylie. Love to you all, Maria, Neil & Kylie Jo

Wednesday, February 23, 2005 10:52 PM CST

We are home! We met with a genetisist (sp?) this morning. Kylie had her blood drawn yesterday and it will be a few months before we know if this is genetic or not. They said about 70% of the time it's not, just a new mutation- one of the 400,000 things that can go wrong when you are pregnant. If it is genetic, Neil and I will be tested to see which one of us have TSC. Which ever one of us is positive, our siblings will have a 50% chance of having it. Any future children we were to have would have a 1 in 4 chance, odds that I feel at this time are too great to risk, (although Neil says your chance of having a winning mountain dew cap are 1 in 3 and you never win at that. =)) Neil is much more of an optimist than I. Kylie is slowly returning to her old self as the phenobarb slowly comes out of her system. She is still a little bit unsturdy with her head but her eyes have cleared up and she is much more smiley than the last few days. We took a four hour nap when we got home and both feel a little bit more refreshed. It's going to be so hard to treat her normally because I'm going to be watching her like a hawk, as is Grandma Karen. If she is not fully back to her old self within a week or she has any more seizures, we will be back at the hospital for med adjustments. We pray to God we stay away from that place, (even though I go there everyday to work!) I'm hoping Kylie does ok the next few days, as I'm hoping to go back to work next week. I am really going to need to work on being compassionate towards the chronic drug seekers that we get as patients or towards the people that come in that don't really need to be there. After watching what all these little kids that are so sick go through these past few days, it's amazing to see how strong that they can be and how needy some adults can be. When we first came in on sat., the nurse said that we will meet a lot of nice people here and it is sort of like joining a family. My attitude was that I did'nt want to join their family- by joining I would be accepting that soemthing is wrong with Kylie. But I have met so many really amazing people and I hope that some day I can be as strong as they are. I'm just not quite there yet. One little girl did make me smile last night. She was arguing w/ the nurse about wearing her helmet. The nurse explained to her why she needed to wear it. The little girl then points to me and says, "But she doesn't have to wear hers!" It was nice to have a light moment for a change. This whole ordeal has made me realize that your whole world can change at the drop of a hat. The things that seemed important at one time just are not so much any more. I used to pray to God every night when I was pregant w/ Kylie that He would bless me with a healthy child and that she would grow up to do His work. Since we did not get the healthy child part, I'm wondering if in some sort of ironic way that Kylie will in fact grow up to do the work of God. Or maybe she will just teach the rest of us about it along the way. Much love to you all- Maria, Neil and Kylie

Wednesday, February 23, 2005 9:44 AM CST

We had a visitor earlier. I can't remember where I left off but I just want to thank everyone for their love and support that they have given us since being here, especially our family and Maria's work friends, who have helped to break up the days by poping down to visit throughout the day. I'll write when we get home. Love Maria

Wednesday, February 23, 2005 9:19 AM CST

Good morning. I think today is the day we finally get to go home! Kylie's echcardiogram looks ok. No tubors! Her heart just looks a little bit more fibrous than others. We are going to talk to the neurologist before we go because we are unsure if some of the things Kylie does are in fact seizures.I'll write in a bit.

Tuesday, February 22, 2005 10:09 PM CST

As the day comes to a close, things are getting a little bit easier to accept. Yesterday, our beautiful baby girl, who turned 5 months on Sunday, was diagnosed with Tuberous Sclerosis. It is a horrible disease that I don't wish upon anyone, much less a tiny child who hasn't even had a chance to live yet. As many of you now know, TS is a disease where tiny little tubors have made their home in Kylie's brain, causing her to have seizures. The first seizure that she had was Feb 2. She had an EEG a week later, where she apparently had four seizures, although at the time we were told it was related to her reflux or that she was just 'tired'. Much to our disbelief, after a few seizures on sat, an MRI showed these tubors on her brain. They are sort of like tiny little fiberous "tubes" on her brain. They can also spread to all of her organs and cause a horendous amount of damage, such as blindness, kidney failure, respitory failure, skin problems and so on. On a positive note, Kylie does not have the eye tubors that 90% of the kids have, nor does she have any tubors in her kindneys. The verdict is still out on her heart. Hopefully we will know tomorrow. The neurologist also said that her MRI looks better than most kids at diagnosis. She only has 2 or 3 tiny spots. She is also developing normally, which is also a good sign. It's just so hard to believe that a week ago, I had a perfectly normal little girl and Neil and I were discussing when we were going to have our next child. This week, we have a "special-needs" kid and we don't know if we ever have any more children. I feel like I am in a fog. I can't eat, I can't sleep, I have no idea if I changed Kylie's diaper lately. I feel like taking Kylie and running away, where everything can be ok again. I am so mad that this is happening to us. But then I look into Kylie's big, beautiful blues eyes and she gives me this big gummy smile and I know that I would never change a thing. I would give up my soul if I knew it could make Kylie better, but she is who she is and I love her dearly. Some kids with this disease grow-up into completely normal functioning adults, with regular IQs. We just pray that Kylie is one of those people. Thank you to all of our family and friends who have given us so much support. We love you all and will keep you posted. Love Maria, Neil and Kylie

Tuesday, February 22, 2005 9:24 PM CST

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