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Saturday, October 1, 2011 10:49 AM CDT
Life has been so busy lately that I find myself having a hard time updating this site. As you can see, our girl just celebrated her 7th birthday! She has changed so much this past year and we are thrilled with all of her advancements! She is in 1st grade, at a new school and is thriving! Her latest accomplishments have been in spelling and reading. I love listening to her spell words to me, when at one point, we didn't even know if she would ever talk. Ky is still busy after school, with PT/OT and speech therapies. She will start dance in a few weeks. Medically, she is doing better than she ever has before. Seizures are few and far between, mainly happening at night. Although lately, she has been able to tell us she is having one or just had one. She hasn't been sick lately, which has been huge. The other 2 have been good. Ava is busy with soccer, theater class, dance and being bossy at school. The first 2 weeks of school involved 6 "take a break"s but has now had 2 weeks of stars each day. Love my girl but she is a chatter box at school and is always in everyone's business. I keep thinking she will be a CEO of a major company someday but when you ask her what she wants to be when she grows up, she says, "A princess. But then I'm goin to college to be a brain doctor, so I can fix my sister." Love it. Shea is in the middle of the terrible twos. Everything is "No no mama". Climbing on things, dumping out things, flushing things, feeding things to the dogs, coloring on things and on and on. I have tried to approach potty training but the response I get from him is hands covering the eyes or fingers plugging his ears, while he runs away from me screaming, "NOOOOOOOOO"! Some days, I fantasize about no diapers in the house. Hoping he will be trained in the next 6 months. Hope you all have a great fall!
Sunday, July 24, 2011 10:57 PM CDT
Summer is flying by and we have been BUSY!! Here are a few highlights since our last update~
May~ We had another successful TS walk. Team "Kylie's Hope" came in 3rd place, raising over $3000. Overall, the walk raised $39,000! Thank you to everyone for your support!
June~ We have a kindergarden graduate! Kylie graduated from Kindergarden, in a cute, yet bittersweet celebration. We are a little sad to see her friends move on to 1st grade, while we switch to a new school for 1st grade. Hopefully it will be a good fit for our girl and that we adjust to the 2 hr difference in start time! For those of you who know us well, being on time is not our strong suit and we will be starting 2 hrs ealier this year! We spent most of June indoors, as MN apparently had monsoon season. We also decided to skip summer school for Ky this year, as she has been doing it every year since she was 2. It has been a nice break for her and we have enjoyed a lot of family time. Ky also had an MRI of her brain and abdomen. They were checking to see if the tumor in the ventricle of her brain had grown, as well as to see if any tumors have grown in any of her abdominal organs, most specifically, in her kidneys. We were thrilled to find out the her brain tumor is stable and that there are NO tumors in any of her abdominal organs. This is huge, as kidney tumors can be such a huge issue for these TS kids. Despite this nasty disease, we feel blessed. We also cut 10 inches off Kylie's hair this month, as well as 7 inches off Ava's. Bathtime has never been easier!!
July~ All of the time indoors must have paid off, as Kylie is now completely in underwear!! It was our "dirty" little secret- although she would use the toilet, she lacked the muscle control to be potty trained. I think sticking close to home for a month and an extremely persistent mommy has paid off! We are so proud of her and she is thrilled with herself!! This is the most exciting thing to happen in this house since she started walking. =) Our other exciting news is that she is starting to read! We have been working on sounding out words on flash cards and it seems to be carrying over into her private therapy- she is picking out words here and there and is sounding out some words in her books. She has had great seizure control over the last few years and I think this plays a huge part in her learning. Well, up until the past few weeks. I'm not sure if it was the heat and humidity or what but the seizure monster reared his ugly head for a bit. So much so that I actually emailed her neurologist's nurse to see about a med adjustment or an EEG. It's been over a week and I haven't heard back, but things seemed to have settled down the past few days. So we will see. She did pass out when we were at the beach on Friday, so we still need to be very careful with her when it is hot out. I try to keep her home when it is too hot out but sometimes we just need to get out. We found that she LOVES to swim, which is awesome, since she hated the water the past few years. Ky played t-ball this summer and took a yoga class, with other kids from her therapy center. She loved both!
We have had a relaxing summer, full of swimming, bowling, a trip to the drive-in, picnics, playdates, boating on the St Croix, parades, playing with our new bulldog pup ("Princess Fiona") and trips for ice cream. We are looking forward to our annual camping trip next week and we hope we can take Ky with. It all depends on the weather. We also have a trip to Valley Fair planned at the end of August and are looking forward to seeing Auntie Kari next month- she is coming home for the golf tournament! Speaking of, the 7th Annual "Kylie's Hope" Charity Golf Tourney is coming up. We changed locations and this year, it will take place on Sunday, Aug 14, at River Oaks Golf Course in Cottage Grove. Tee off is at 1:30 pm , followed by dinner and a great raffle. It is always a great time, so we hope you can join us! This we, we started a non-profit, "Kylie's Hope". Some of the money raised will be donated to the TS Alliance, with the rest going to KH. "Kylie's Hope" is very dear to our hearts~ the money will go directly to the families on the pediatric epilepsy unit, in the form of Visa gift cards, gas cards, and care packages. The families we help will be ones that have been in the hospital for extended periods of time and can go to helping pay bills, make up for lost income while their kids are sick or even for a night out for the parents. We had so many people care for us when Kylie was frequently hospitalized and this is our way of giving back. We would also like to help the epilepsy unit out, getting them this that the kids and parents can use on the unit. For more information, feel free to email Neil or myself, at riau2@aol.com.
Although we are enjoying summer, we are looking forward to getting back into a routine. Both girls will be in school fulltime this fall, (would you think less of me if I told you I will not be one of the moms that cry on Ava's first day of K?) The girls will be at 2 different school, starting and ending at nearly the same time, so it should be interesting! They both will dance again this fall and in fact, Ava is trying out Irish dance lessons this week, to see if we will be making a switch! She also did gymnastics and soccer this summer, which she enjoyed, so I assume she will be doing one of those as well. I took the summer off but will start school for myself again this fall. Neil and I are both busy at work and are enoying the business of raising these crazy kiddos! Hope you are all enjoying your summer!!
Thursday, April 21, 2011 9:13 PM CDT
It's that time of year again! Join Team "Kylie's Hope" on Sunday, May 15th, at Como Park. Registration begins at 9am and the walk starts at 10am. Visit with the St Paul Winter Carnival, dance to the kids band, "The Flyers", enjoy face painting, prizes and more! Lunch provided by Buffalo Wild Wings. All money raised benefits the TS Alliance, which supports finding a cure for Tuberous Sclerosis!
http://www.firstgiving.com/fundraiser/maria-gibbons/step-forward-to-cure-tsc-st-paul-mn/team
All is well at the Gibbons home. We enjoyed a much needed vacation to Disney World in Feb. I cannot put into words what a great time we had. It was really hard coming back to the cold, never ending winter of MN. Ava was crying when we left, saying, "But I'm gonna miss the sun!" I almost cried with her!
Kylie is doing wonderful. Hard to believe Kindergarden is almost over and she will be in the big, bad world of 1st grade next year. She will be attending a new school, which has a fantastic reputation and a wonderful special ed class. The teachers visited her current class and told us they fought over who gets to teach her in the fall because she is so sweet! She had a 3 year review at school a few weeks ago. I was petrified the night before and could barely sleep. We were plesantly surprised at her scores on some of the testing. Although she is behind her typical peers overall, she had a few age appropriate scores and her reading skills are not too far behind. So, big sigh of relief and we are ready for next year. We did decide to skip summer school this year. She has been going non-stop, nearly year round, since she was 2. This summer, we are going to focus on having fun and just enjoy life. We always seem to have a million things going on and since both girls will be in school full days in the fall, we are taking a break from it all. Kylie is scheduled to have her annual MRI in June, as well as an abdominal MRI. They are monitoring the growth of the tumor in her brain and checking her kidneys and other abdominal organs for tumors. So far, her brain is the only area she has tumors. Please pray things remain stable. We are also dropping her therapy this summer to 2 days a week. She will be playing adaptive tball again, as well as gymnastics and yoga. She LOVES yoga~ she gets out her book and practices all of her yoga moves. I love it!
Ava is finishing up her last year of prek. This little girl has grown so much this past year. She is offically taller (and heavier) than her big sister, wears a full shoe size bigger than Ky and wears a size or 2 bigger than her in clothes. Her heart is HUGE and I love to see her love and compassion for Ky. Always watching out for her, making sure she is well taken care of. Ava will be finishing dance with a recital in June. This summer, she is starting gymnastics, will be playing soccer and doing a sports camp 2x a week. She is full of energy, so we are hoping to burn some off during the day!
Shea turned 2 this month and he is all boy. Constantly getting into mischief, bugging his big sisters and giving an impish grin to whoever looks his way. He always wants to be outside, so hoping the weather warms up soon so he can enjoy it!
Miles is finally staring to settle into our routine. We are still working on some training with him but he is so good with the kids. Although he is supposed to be with Kylie for the most part, him and Shea have become fast friends. He does have horrible seperation anxiety, so we are hoping we have a solution to this problem. We have been wrestling with the idea for months to get another bulldog. We are missing our beloved Buster horribly and have decided to get another bulldog. This dog will help to fill a void in our hearts and will hopefully be a good buddy for Miles. We are going to look at puppies on Monday, so we will keep you posted!
Hope you all have a blessed Easter!
Wednesday, February 9, 2011 0:27 AM CST
Kylie had her follow-up neuro appt with Dr Frost today. He feels she looks great and that she has really "blossomed". When I watched her today, playing "Simon Says" with Ava, telling Dr Frost he didn't say "Simon" when he called her over, my heart filled with love for her. All she has gone through, everything that has happened to her and never in a million years did we think she would be doing as well as she is today. She will have a follow-up MRI of her brain and abdomin in June. Her kidneys and abdominal organs were clear on the last scan and we are hoping for no tumor growth in her brain. We are going to draw some labs soon, with the hope that we can continue to wean some of her seizure medications. No rush but something we can hopefully do soon. We will probably be switching schools for her in the fall, to a school that has a special ed program. We feel that being in a regular kindergarden setting her really helped her this year but for acedemic purposes, she will do better in a smaller group setting. We have really been struggling as where to send Ava to Kindergarden but we are hoping we found the best of both worlds that we were looking for. We will keep you posted.
Miles the service dog is doing well. He has not alerted us to a seizure yet but Ky is rarely having them. He does, however, wake us up every morning when the kids wake up. Very helpful, when a typical morning involves random things being flushed down the toilet, the cupboards being raided or homemade haircuts being made...... He has been going to therapy with her and is just an all around calming presence for her. Well, when he's not chewing up stuffed animals or Neil's slippers. =)
Ava turned 5 last week and my heart breaks a bit that my baby girl is growing up. Still full of spunk and sass but charming and full of wit as well. She has grown so much this past year and is totally ready for kindergarden this fall
Shea is now 22 mo and when they say boys are wired different than girls, I am totally getting it now. Busy, busy and busy. He gets into more stuff in 10 minutes than the girls got into in 1 month- combined. He had a speech eval today, since he only has about 13 words. However, since he seems to understand so much, he probably won't qualify for speech. Sounds great to me! We are remodeling the basement and have all of his Christmas presents packed away, so there are very few "boy" toys available to him. I about died when the teacher pulled out an airplane for him to play with and he put it down and took out a doll. =) Only in a house of sisters. We will have to work on it.
We are super excited to be leaving for 10 days in FL next week!! 6 days in Disney and 4 days spent visiting family friends!! 3 kids, 1 dog, 2 strollers, 3 carseats and with a stack of suitcases, I'm sure airport security will be overjoyed to see us! Ha!! Hopefully you won't see us on the news. =) Hope you are all doing well!!
Wednesday, December 29, 2010 8:57 AM CST
We welcomed the newest member of our family into our lives this week! Miles the service dog looks like he is going to be a great fit! Here is a link the local news station in IN did on us. We will be traveling back to MN in the next few days. Happy New Year!!
http://www.wsbt.com/news/wsbt-mans-best-friend-gives-6year-o-122810,0,1484417.story
Wednesday, December 22, 2010 9:20 PM CST
I'm not sure if anyone really reads this or not anymore but we got word that Kylie's seizure alert/ service dog is ready and we will be leaving on Monday, the 27th, to pick him up and train with him! Praying for safe travels to IN~ Hope you all have a Merry Christmas!
Monday, November 22, 2010 9:29 AM CST
This week I pause to remember all I am thankful for. I think back to the past and it almost hurts to remember how desperate we were to stop Kylie's seizures. I remember the Thanksgiving we spent in the hospital. Only 3 kids were on the unit, my family and friends were all enjoying good food and conversation. Neil had the flu, so I was just me and my girl. We walked the halls of the hospital, while I watched her have seizure after seizure after seizure. I was so mad at God, wanting to know why He could let this happen to my baby. So sweet, so innocent and so very sick. I was 2 months from my due date with Ava and was worried sick that this new baby would have seizures too. Little did I know was a wonderful gift He was about to give our family.
Fast forward a few years later~
Never in a million years did I ever think we would get here. For the most part, Kylie's seizures are pretty well controlled. She is thriving in school, loving all of the new people that have come into her life. She is talking SO much. We are finally able to have conversations and I enjoy every one! Our family of 3 has become a family of 5- Kylie's siblings have been the best gift. The 3 of them love each other unconditionally. Ava has become Kylie's "other mother"- always watching out for her, always including her, loving her as only a sister and best friend can. Shea adores his big sister, following her wherever she goes. And Kylie adores both of them. Her eyes sparkle whenever she introduces them to new people. I love it.
So this year, I am so incredibly thankful for my family. They are loud, wild and chaotic. Yet, I wouldn't have it any other way. I am thankful for their health, especially for a reprieve from the seizure monster. I am thankful for good jobs, great health insurance and a home to live in. I am thankful for everyone that has touched our lives and for all of the blessings you have brought into them this holiday season. Happy Thanksgiving!
Monday, September 20, 2010
6 years ago you were placed in my arms and I instantly fell in love. You are, and always will be, my beautiful, my sweet and my so very brave sunshine girl. I love you with all my heart and with all my soul. Happy birthday, my love. I hope you a have a wonderful day!!
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Wednesday, September 1, 2010 10:27 PM Hi all. Summer is just about over and the girls are looking forward to starting school next week. If you hear screams of joy, that would be me, doing the happy dance. =) We have had a really busy summer and August flew right on by. It's hard to believe my baby girl will be 6 in a few short weeks. It's so hard to believe how far she has come these past few years and believe me, I think all the hard work and therapy we put in with this girl is paying off. We still have a long, long way to go but this summer, she started writing some letters and numbers and is drawing pictures of things we actually can understand. (However, the faces she drew all over my microfiber chaise lounge- not ok!) We had a scare a few weeks ago with her labs but her re-draw looked good. We saw Dr Frost a few weeks ago and went over her MRI, which showed no change. We were cleared to push off her next one for 2 years! All of her organs have remained stable, with no tumor growth seen, aside from her brain. Waiting for her ERG results, which we should have soon. There is a chance the eye dr may do a little surgical tweaking to her left eye during the next ERG, as her eye is not as straight as it should be. Our biggest news is that we are starting to wean seizure meds. She will never be completely off meds but if we could get down to a reasonable number of them, I am excited to see how she would do cognitively. She has never had the chance to grow and learn on fewer that 4 seizure meds,yet still does well. Time will tell.
We are in the process of starting a non-profit, called "Kylie's Hope", which the proceeds of the golf tourney would benefit. In turn, we would use the money to directly help the families, who have prolonged stays, on the pediatric epilepsy unit. It may help a family make a car payment, buy school supplies or buy Christmas presents for their kids. As we well know, the kids that are there for weeks or months at a time, need a parent to be with them. And more likely than not, that parent is taking an unpaid leave from work, which can be detrimental to their budget. We are very excited about this and will keep you updated.
We saw a picture of Kylie's service dog, Miles, and I have to say, he is beautiful. Not exactly sure what kind of dog but we are guessing a german shepard/ lab or golden retriever mix. Still not sure when we will be getting him, as the training progress is a long one.
Thanks for checking in!
Tuesday, July 27, 2010 11:47 AM CDT
I think this is officially the longest I have gone without an update! It's much easier to update on facebook but thought I would update this quickly. Things are going great at the Gibbons household. Kylie has done fantastic lately. She was diagnosed with ADHD late spring and then started an attention med, Adderall, which has done wonders for her. She is talking all the time and is even easier to understand. The only drawback is she is back to napping everyday, as she tires out quickly, but is doing well overall. She had a little flare up of seizures a month or so ago but I have not seen one for quite some time. Still waiting on the seizure dog. All we know is his name is Miles and they are currently training him. All fingers and toes crossed this one works out!! We are getting ready to send our girl to Kindergarden!!! I can hardly believe she is almost 6 years old and ready for school. One of her aides at school told me that out of the whole pre-k class, she is the most ready for Kindergarden. After MUCH thought, after many meetings and LOTS of stress, we decided to send her to our local elementary school, which is right around the corner from us, so I can walk her. It is only 2.5 hrs a day and she will have a 1:1 aide to help keep her on task. There is not a special ed classroom, so the therapists will come to the school to do PT/OT and speech with her. Hopefully we made the right decision but we feel she will learn best from her typical developing peers. She will most likely end up in a school with a special ed program at some point but we want to give her a good start. August will be a busy month for her. She will attend a kindergarden readiness program all of next week. She has a few doctor appointments, as well as her annual MRI, ERG and blood work. We were a little worried a month or so ago that she was showing symptoms of tumor growth but that has now resided, so we are praying for no growth! Also praying the ERG shows no damage to her retinas. Her actual vision has improved with each dr appointment, so we hope that continues. But overall, she has had a good summer and is doing great.
Ava Grace loves being 4. She tells us every day, "I can .... because I'm 4." She wears a princess crown everywhere we go and I think she actually believes she is a princess. She has had a busy summer. She graduated from PT at the end of May, (for hip issues) and has had fun playing tball, swimming and going to Spanish class. She is excited, (and mom is THRILLED)that she will be going to pre-k 3 days a week in the fall. She is constantly craving interaction from other kids, ("I NEED a play date!!!")and continues to drive us crazy with all of her wild ideas that get her into trouble. September can't come soon enough!!
Our sweet boy Shea is slowly turning into a monster. =) He is loud and when he wants his way, he wants it NOW! He is very close to walking, even taking some steps (and face plants) on his own but not quite there yet. He will already be 16 months next week! Where does the time go? His eye crossing is SO much better. We doesn't have to wear glasses anymore, just some eye drops. Our big issue with him is that he was failing his hearing tests over and over, after having a ruptured ear drum last winter. A few weeks ago, he got new ear tubes placed and his adenoids out. Since then, he has really started to move and has said a few new words. We did find out that he also has Von Willdebrands disease, the same blood clotting disorder Ky has. So after a few weeks of post-op meds and a visit with the hematologist, he is doing well.
We went on a mini vacation a few weeks ago, up to Brainard and have discovered that A. The kids are bad travelers. B. Mom has more patience with the kids than dad, (shocker, I know) and C. Our next family vacation should be sans kids. However, we are packing up next week for our annual camping trip with a bunch of good friends. Hoping all goes well!
Kylie is going to be in the New Brighton parade on Aug 12, if anyone happens to be there. She will be with the "Wishes & More" group. On Aug 14th, will be having the Annual "Kylie's Hope" chairty golf tourney. If you would like to play or donate a raffle item, go to www.kylieshope.com Hopefully we have a good turnout and good weather! This year, proceeds will benefit both the Tuberous Sclerosis Alliance and the new epilepsy unit at St Paul Children's Hospital. Hope to see you there!
Thanks for checking in with us!
Sunday, May 9, 2010 9:08 PM CDT
Happy Mother's Day to all of the mothers in my life!! A beautiful, blue eyed little girl made me the mom I am today and despite all the hardship we have faced, I am so grateful for all she has taught me.
A lot has been going on since I last updated. Kylie has had a little flare-up from the seizure monster and after letting her sleep in her own room for the last month or so, she has slowly been creeping back into our bed. She had a seizure early this morning and through the whole thing, she kept saying, "I want Ava!!" She then fell back asleep for a few hours but as soon as she opened her eyes, she was again asking for her best buddy. We got the report back from her neuropsychologist and although a lot of it was hard to read, there were some good parts too. Her strongest skills are actually her "pre-academic" skills, were she only fell a few points behind a typical 5 year old. We also got the official diagnosis of "ADHD", which we knew was a long time coming. We are going to start her on Adderral and hope it helps her to focus a little better. The dr we saw think that getting her on the correct attention medication will be the best way for Kylie to show us all of the knowledge she has retained over the years. We are also working on the big transition from the pre-k setting to the kindergarten classroom. We have to make the big decision of do we send her to a regular grade school and have her pulled out for therapy or do we send her to a school that has a special ed classroom in the school and she would probably divide her time between that class and a regular class. I still have no idea what we are going to do and it scares me a little bit that this is just the beginning of a lifetime of hard decisions we are going to have to make for her. She had an eye exam a few weeks ago and just like at her last appointment, her vision has improved and they decreased the prescription of her glasses. We will pick up her new specs this week- mocha brown with light pink trim. She is going to attend a summer session of school for 5 weeks, continue with her PT, OT and Speech therapies play t-ball and hopefully start swimming lessons.
Ava is ending pre-k in a few weeks. We started the year with her crying for me through most of the class and we are ending the year with her so comfortable that we have been having daily chats with the teacher about Ava's listening skills, (or lack of them). We are currently working on a sticker chart, with the promise of DQ and a sleepover at Grandma's if she is good at school. She is going to have her dance recital in the beginning of June and has been practicing hard on "You are my shun-shine, my only shun-shine..." Last month, she was off school and came with to Ky's therapy. Ky's PT was watching her walk and wanted to evaluate Ava. She said that her hips should be inverted by 35ut Ava's are inverted by 70She started her in PT 1x a week but said she may end up needing hip surgery in the future. I guess we will cross that path when we come to it. She has been enjoying swimming lessons and is taking tumbling and playing soccer at the Y, with the hope of helping her coordination deficits. =) She is constantly dreaming up things to do, (most of which have me ready to pull my hair out!) and I am beyond thrilled the weather has gotten nicer and she can be outside more.
Little Shea is already 13 months old. Still not walking but that is a family trait. He gets around by army crawling, (and yes, he is in PT too!) but for the most part, is just content and loves eating up all the attention from his sisters. His strabismus has gotten better, which is a good thing, since he refuses to wear his glasses. The dr is starting him on some eye drops, which will hopefully help prevent his eyes from crossing when he is focusing on things up close. His biggest issue of late seems to be his ears. Despite getting tubes in January for frequent ear infections, he has failed 2 hearing tests since then. At his last appointment, he still had fluid in both ears and both tubes were clogged. He has been on antibiotics for a few weeks and we see the ear dr again next week. Depending on what he sees, if things are not going in the right direction, Shea will have surgery to put in new tubes have his adenoids out and have a sedated hearing test. I know he can hear but after a year of constantly having fluid in his ears, the sound he hears may be a little muffled. I think my kids are the ones jacking up insurance costs!!
I took a week of vacation this week (a huge rarity!!) and plan to gut the house from top to bottom. I am getting ready for a garage sale with a friend and feel the need to cut some stress out of my life, which starts with my laundry pile. We are preparing to possibly go on strike at work and I have spent countless sleepless nights stressing over it. If you are the praying type, please pray for a good outcome!!
Lastly, this year's "Step Forward to Cure TSC" 5K walk is a week from today! I will be so glad when it is over! I have been the chair of it for the past few years and this year, I had a lot on my plate with it. But it should be a fun time! We have a kid’s band, "The Flyers", playing this year, as well as the winter carnival, face painting, food from Buffalo Wild Wings, prizes and more! IF you don't have anything going on Sunday May 16th, we would love for you to join team "Kylie's Hope". Wear pink and brown and come out for a fun morning! If you want to sponsor Kylie, you can make a donation at www.firstgiving.com/mariagibbons
If you can't make it, please pray for no rain! This week does not have a good forecast!
Thanks for checking in and have a wonderful week!
Friday, April 2, 2010 2:43 PM CDT
Happy 1st birthday to our little sunshine boy! It's hard to believe a year has already passed! Shea was the perfect completion to our family and loves being doted on by his big sisters.
Kylie continues to do well. We have seen 2 seizures since January, which is wonderful. Her appt with Dr Frost went very well and she will have a follow-up MRI in August. She will be having a neuro-psych evaluation in 2 weeks, which will give us an idea where she is at developmentally and cognitively. I pretty sure I know what to expect but still may need a stiff drink afterwards! We also have her IEP meeting coming up in a few weeks. It's hard to believe that in a few short months, my baby will be on Kindergarten!
The girls are off school and we took a trip to the MN Zoo today, where we got caught in a downpour. We are picking up a few birthday supplies on the way home and will have a little celebration tonight. I hope you all have a very blessed Easter!
Wednesday, March 3, 2010 8:45 PM CST
Kylie's ERG results showed no change, so the Vigabatrin has not been toxic to her eyes, (thank God!)Since the new year, we have only seen 1 seizure (amazing!), so we continue to pray things stay the same. I really hope I am not jinxing anything but I have to say, Kylie is currently in the most stable place medically that she has even been in. No seizures, no illnesses, no hospitalizations. It is amazing to see what some normalicy can do for the brain! Although she prefers to speak in 3-4 word phrases, I am no longer shocked when 8-9 word sentences come out of her mouth. Her thought processes also seem more organized, (ie "Mommy! I wanna go downstairs and watch Snow White eat a bad apple." Hey, I guess that is a 13 word sentence!) She is doing a program in therapy and at school, called "Writing Without Tears". She is learning how to write letters, which is amazing. We went to her Kindergarten registration last night and I nearly had a panic attack. It is a little overwhelming seeing how far behind she is compared to her pears and I am a little heartbroken imagining kids being mean to her. But, I guess we just hope for the best. She is really an incredibly sweet little girl and I just pray that people see through her disabilities and see her for who she is. She will be in a regular kindergaten class and will either be pulled out for therapy or have her therapy right in the class. One of her therapists in her pre-k class will be working with her at her new school too, so that is a little reassuring. Plus, her school is right around the corner from our house, so I can walk her back and forth, which will be fun.
We see Dr Frost in a few weeks and I can't wait for him to see how good she is doing. I'll update more after the appointment.
Ava continues to keep us on our toes. Naughty, inventive, creative and driving me crazy! For example, she was playing with my make-up for the 95th time today. I said, "Ava! Why do you keep playing with my make-up?!" She says, "I wanted to make sure it wasn't chocolate!" Seriously?
Little Shea will be 1 next month. It's hard to believe my baby is growing up so fast! I am a little worried he is not crawling yet, although Ava didn't crawl until the week before her birthday. I think he will walk before he crawls but we'll see. He is pure joy though. Full of smiles and adores all the women in his life.
I'll update more after our next appointment- hope you all enjoy the beautiful weather this weekend!
Monday, February 1, 2010 9:10 AM CST
Ky and I are at the U of Mn right now, waiting in pre-op for her ERG to
begin. It is about as pleasant as a root canal but we've got to get it done. It's hard to belive that tomorrow will be the 5th anniversary of Ky's first seizure, Ava will turn 4 and Shea will be 10 months. Time sure flies. Had you told me then that in 5 years, I would have 3 kids, be working full time and after literately experiencing thousands of seizures, have this amazing, vibrant, bright little girl, I never would have believed it. It's amazing how time can heal "old wounds". We are doing what I never thought I could do again- living life fully and embracing each day. We went from utter devestation to a life full of possibilities. We have a special day planned for Miss Ava tomorrow. Happy 4th birthday to an amazing little girl, who is full of spunk and sass but who loves her sister fiercely and teaches Kylie new things everyday. We love you! Off to the OR.....
Tuesday, December 22, 2009 1:56 AM CST
Snowy days are upon us. MN is supposed to be getting a huge storm this week, so I am sure some sledding is in store for us this weekend. We have a surgery date of Jan 5th for the 3 kiddos to have their ENT “tune-up”. Just waiting on Ava’s blood work, to see if she also has Von Willebrands disease, (family history and Kylie has it). With the frequent bloody noses she gets, they want to be confident she either does not have it or sees the heme/onc doctor before getting her tonsils and adenoids out. Aside from that, the kids are EAGERLY awaiting Santa’s visit on Friday. That is, unless he got mom’s email today on the kids rather less than stellar behavior. Let’s just say pretty much every toy they own has been bagged up and will be going to the North pole with Santa! I am about to crash but just wanted to share a copy of this year’s Christmas letter.
Merry Christmas from the Gibbons Family!
It’s hard to believe 2009 is already coming to a close. As always, we have stayed very busy. 2009 has been quite an exciting year for us! On April 2nd, at 5:35 pm, Sheamus James Gibbons arrived, making our family complete! He weighed in at 7lbs, 6 oz and was 18 inches long. 8 months later, our little peanut is now a strapping 25 lbs and 30 inches tall! He is completely and totally adored by his big sisters and is a joy, always smiling, giggling or screeching. His sisters wait on him hand and foot, whether he wants the attention or not. We were thrilled when he also tested negative for Tuberous Sclerosis, although a bit disheartened to find out he needs to wear glasses. He has a condition called strabismus, in which his eyes tend to cross when he is focusing closely at things. But so far, the doctor does not think he will need surgery, if we can get him to wear his glasses. Ha!
Ava Grace will soon be turning 4 on February 2nd. Our little spitfire, (a HUGE understatement!), started pre-k this fall, at Maternity of Mary- St. Andrews Catholic School. We had conferences last month and the teacher started out with, “Ava is EXTREMELY creative……” In other words, this covers flushing flashlights down the toilet, “just to see what happens”, only answering to “Sleeping Beauty”, covering her brother’s face completely with stickers and constantly dreaming up naughty things to do and figuring out ways for her sister to take the blame. She talks 24/7 and is always 2 steps ahead of us, yet keeps us in hysterics on a daily basis. She played t-ball this summer but only wanted to go to t-ball to see “her boys”. God help us! She also started dance and Sunday school this fall, both of which she loves. She has been my little helper with the baby and the other morning, I woke up to her saying to me, “I just love my brother. Thank you so much for him mommy!” I’ll remind her of that next year when he is getting into all of her stuff!
Kylie Jo continues to have a jam packed schedule. She attends pre-k 4 days a week, 2 at her special education program and 2 days at Holy Childhood Catholic School. She is also taking the bus for the first time, which she really seems to enjoy. The school district found a fabulous bus aide for her, which has helped calm my “mommy fears” and keeps me from following the bus to school, (yes, I was “that mom”!) She continues to go to Kids Abilities for PT, OT and Speech therapy, for a total of 6 therapies a week. She was in dance this fall and we really enjoyed watching her recital. It was so cute! Medically, Kylie has been doing great. In March, she had her port-a-cath replaced, only to get a horrible infection in it by April, 2 weeks after Shea was born. She had to be hospitalized for IV antibiotics and then had surgery to have it removed. We decided against replacing it and so far, so good! She had a repeat MRI of her brain this summer, which showed that the tumor in her ventricle remains stable. She does not need another MRI until next summer. Our “miracle” drug, Vigabatrin, was FDA approved this fall, which was huge for us. This is the only medication that has really helped to control Kylie’s seizures. And now, insurance will cover it! We are still seeing some seizures with Kylie, although she has been going a few weeks here and there without any. We are mainly seeing them in her sleep now, so we are not sure how many are being missed. This brings us to our next bit of exciting news. As many of you know, Kylie was approved for a seizure alert / service dog. Through generous donations of family, friends and strangers alike, we will be bringing the newest member of our family home sometime this spring or early summer. Although our hope is that the dog will be able to alert us to Kylie’s seizures, especially at night, we realize this is not a guarantee. But the dog will be trained to also help keep Kylie safe and will hopefully help her attention span and help with her ability to focus when she is learning. Keep your fingers crossed! Kylie continues to be a joy in our lives. Although she can be easily compared to the Energizer Bunny, she has made some wonderful gains this past year. Her speech seems to get better and better each week, she is starting to recognize and “read” certain words and she loves to joke with us, in her own cute way. It’s hard to believe she turned 5 in September. We will soon be looking at schools for Kindergarten next year- yikes!
Neil and I are slowly realizing we are now outnumbered with 3 kids. He continues to work at Comcast, although he is now working 10 hour shifts and is home Fri-Sun, which is wonderful. He played softball 2 nights a week from April-Oct and went on his annual hunting trip to the cabin last month. I will actually believe this is where he really goes when he comes home with a deer! In May, I chaired the annual Step Forward to Cure TSC walk/5 K run. Although we did not raise as much money as in years past, we still did pretty good, raising over $40,000 for TSC research. In August, we put on the 5th Annual Kylie’s Hope Charity Golf Tournament, which also raises money for TSC research. We had our best year yet, raising over $23,000. We both celebrated our birthdays in July and I entered my 30s (eek!) So far, so good! I made a huge decision to quit daycare and to return my focus on my nursing career. Although I miss all of my kiddos, there is more peace in our house, (yet, I am not more organized, like I thought I would be.) I took a new position at work, which will start after the New Year and I will be working full-time, straight evenings. This will allow me to continue to be home with the kids during the day but still be able to work.
We are so thankful to have each and every one of you in our lives, whether it is by a daily phone call or even just a Christmas card each year. We pray that you all are healthy, happy and that you will be blessed in 2010. Merry Christmas!
All our love~
Neil, Maria, Kylie, Ava and Sheamus Gibbons
Sunday, November 22, 2009 8:58 PM CST
During this Thanksgiving season, we have so much to be thankful for. I rarely update this site anymore and I guess the reason for that is there is not much to update about! Kylie is doing wonderful. We saw a little flurry of seizure activity around Halloween but lately, (knock on wood!), all is quiet on the home front. She seems to have grown a few inches lately and thinned out a bit. The size 4 pants that are too tight on her sister are fitting Ky once again. Her behavior seems to have calmed down too (probably because the seizures are better). We have not seen much hitting, just the occasional hair pulling to her sister, (which 99f the time, Ava deserved!) Our biggest issue is her very short attention span, which quite honestly, I don't know if that will get much better. Your impulses/attention is controled by your frontal lobes of your brain. In Kylie's case, she has a lovely, matching and quite large tubor on each frontal lobe. So it is not really surprising to find her having a hard time controling herself or getting so easily distracted all of the time. We just roll with it. Her speech is getting better every day and our next focus is getting potty trained. I am a little horrified (and a bit devestated), to still have her in pull-ups. But the other day, she said, "Mommy! I go potty." She sat on the toilet and went. Granted, it would've been better if she had pulled the pull-up down first........... Not sure where I was with my last update but we saw Dr Ballard last month and Kylie's vision has really improved from wearing her glasses. She loves her little red specs! Shea is sporting matching blue ones, yet we have a ways to go on getting him to keep them on all of the time. Ava and Ky have been having a great time lately, pretending they are "princesses". Ava always gets to be Cinderella, Snow White or Sleeping Beauty. Kylie, for some reason, is always Pochauntess (sp?)
We have remained extremely busy lately. I think the kids are handling my transition back into the working world quite well, although while I was at work today, I talked to Ava and she said, "I miss you mommy! You always go to work!" We will all be enjoying my stretch of 5 days off this week! Both girls are loving pre-school and we were able to get an aide for Kylie this year, so she can ride the bus. Her aide, Debbie, is wonderful and I really feel we made a great choice. Kylie loves the bus, gets a little nap on the way home and I don't have to wake up Shea to go get her. I had conferences at Ava's school a few weeks ago and the report I got was, "Ava is EXTREMELY creative." Her goal is to listen to directions "willingly". Sigh........ I almost died when her teacher greeted her the other morning, "Good morning Ava!" And Ava says, "My name is NOT Ava. It's Snow White. And this, (with a jerk of her thumb over her shoulder, to Kylie, "is Pochauntess". She is in the Christmas pagent in Sunday school and had a fit when they told her she was going to be an angel, "I am not an angel! I am a princess!" The teen years are going to be a blast!
The Gibbons family is most likely going to set a record in the next few months. Our ENT will be doing surgery on all 3 kids on the same day. Ky and Ava both had tubes in their ears nearly 3 years ago. Of course, mine are the ones whose tubes don't fall out on their own and they need surgery to get them out. So, Ky will her her tubes out, Ava will her her tubes out, as well as her tonsils and do to the back to back double ear infections/ ruptured ear drums, Shea will be getting tubes in. They will all be done at Children's, because of Ky's medical history and the fact Ava will need to stay overnight. I am a little worried about Ava though. Tonsilectomies can cause a lot of bleeding and I am pretty sure Ava must have the same blood clotting disorder as Kylie (von Willdebrands). She has been getting pretty bad bloody noses nearly every day or two the past few weeks. She will need to be tested for it before surgery, in case she needs clotting products.
Our exciting news is that we have raised nearly enough money to get Kylie a seizure alert/ service dog! The fundraiser my mom put on was a smashing success! The day ended of being a fairly nice day and we had a huge turnout. The support was amazing and we want to thank all who were involved from the bottom of our hearts!! We have a few months to save for travel expenses and then we will be taking a family road trip to Indiana sometime this spring, to meet the newest addition of our family.
We are looking forward to this week, spending time with family, getting ready for Christmas and just giving thanks to God for all of the blessings in our lives. I hope you all have a wonderful Thanksgiving and thanks for continuing to check in with us!
Wednesday, October 28, 2009 9:42 PM CDT
I am really annoyed I just lost my long journal entry, so this will be short and sweet.
Check out http://www.halloweenspooktacular.myevent.com
It's a huge bash this Saturday, from 10am-3pm, to help raise money to pay for Kylie's seizure/service dog. Grandma Karen is in charge of it all!
Tune in to Channel 4 news tomorrow or Friday, 5 or 6 pm news ("I'll update when we know for sure). There will be a quick segment on the party, (and I am praying really hard the video footage of my messy bedroom does not make the final cut!!)
Shea is getting glasses =(. That's a whole other story, filed under, "Are you freaking kidding me?" Tune in later for more......
I have a sick kiddo to get to sleep. Hope she rebounds quickly for her big day on Saturday!!
Saturday, October 10, 2009 1:26 AM CDT
Wow, have I ever been bad at updating! I have no idea where I last left off but I'll give you a little update of the latest happenings at the Gibbons house-
Miss Ava- Ava Grace entered the big, bad world of pre-school a few weeks back and for how outgoing and social she is, I am afraid to say that I have the child that screams and crys EVERYDAY she goes to school. It starts the day before, with her telling me, "I not go to school. I stay home with you". Then tears, more tears and the day of school, the screaming and tantrums begin. We are not giving in to her request to stay home, so I am hoping this is a passing phase. I am so used to dropping Ky off at school and I get a wave and a "Bye mom!" I have been home with her every day for the past 3.5 years, aside from working every other weekend, so I should have know what a huge transition this would be for her. Aside from the school drama, she is doing great. She is in dance again this year and what a difference a year makes. Last year, she was the leader of the "naughty girls" and we had to drop out. This year, she is practicing her moves at home all the time. She is still a trouble makers (a kitchen full of bubbles the other day and a cat hiding in the cupboard from her), but is as sweet as ever and a riot to be around.
Mr Sheamus is no longer my tiny baby. He is a strapping 22lb, 15 oz and 28 inches long. Although he was rolling over a few months ago, his girth has seemed to slow him down. Now, he is content to stay in one spot, unless his cousin Brooke is over. Then he tries to roll to her and eat her hands. He is stitting up though and likes to stand up by himself, holding on to things. He has turned into the happiest, sweetest baby and we are all having fun loving him up. We are still having issues with his eyes crossing but are still patching him everyday and we see the eye dr at the end of the month.
I made a huge leap and quit daycare, going back to the hospital about 4 days a week or so. I am taking a rather large pay cut but the peace I have felt this past week has been worth it. The time I have with my kids is so much more enjoyable and I am finding that I have much more patience when the walls get colored on or a brand new bottle of dish soap ends up all over my kitchen. I feel like a much better mom. Shea is going to benefit the most, as he was pretty neglected the first 6 months of his life! I am trying to get things organized around her and to adjust to my "new life". Neil continues to stay busy with work and projects around here. I am overjoyed that his softball season is finally over!
As for the star if the show, Miss Kylie Jo continues to keep us as busy as ever. She is attending Holy Childhood 2 days a week and is in her special ed class 2 days a week. She also continues with speech, PT and OT 2x each a week. She loves being in school and we love that she is busy! We tried sending her on the bus to school this year but on the first day, I asked the driver and aid if they knew how to give her seizure meds and their response was, "She has seizures?" Needless to say, riding the bus was a short affair. I am still waiting to hear what the deal is, as it would be nice for her to be able to take it home. Otherwise, I have to get the other 2 up in the middle of naps. However, the first and only day she took the bus, the bus was over 40 minutes late dropping her off and the aide happened to be a guy. Nothing against men but it made me a little uncomfortable, since she can not tell me word for word what happens on the bus. So, for now, we drive her. She has been doing a great job wearing her glasses and really seems to see better with them. Gee-ma bought her a snazzy new red pair, which she loves. She has been quite jealous of Shea lately and she has been acting out a bit. Crying when I am holding him, being fine one minute and then whining to eat as soon as I start feeding him, constantly saying, "Me mommy. ME!!!" whenever I am doing anything with him and constantly trying to crawl into my lap and hugging me. She is definately not getting the same attention she once was, so I am trying to make a conscience effort to spend more time with her.
We have had a few shining moments of our TS journey lately-
First, Kylie's story was chosen as part of the national campaign for TS fundraising. It was pretty cool to get their appeal in the mail, with her story and pictures. On the front, it says, "Note to Goliath: David's name isn't David. It's Kylie". Sums her up pretty well!
Secondly, Vigabatrin was FINALLY FDA approved, meaning our insurance will finally cover the med that has changed our girl's life. I stopped in Dr Frost's office today, to fill out the paper work and to get the ball rolling. She will have to have ERGs every 3 months now, due to regulations but it will be so nice to have an extra $300 in out pockets every few months.
And lastly, we are in the process of raising money to get Kylie a seizure alert dog. For the past 5 years, she has been sleeping in our room, due to her seizures. We are hoping a dog would help alert us to her seizures, so she could sleep in her own room at night. My mom is putting on a big halloween party, called "Spooktacular for Kylie", on Oct 31, from 10am-3pm. Proceeds will go towards the dog. Please email me for more info if you would like to attend.
I think that is all for now. I'll try and keep this updated a bit more often! Thanks for continuing to check in!!
Saturday, September 19, 2009 1:54 PM CDT
5 years ago today, I was hugely pregnant and completely miserable. Little did I know that 24 hrs later, my entire world would change. It seems like it was just yesterday, while at the same time, it seems like 20 years ago. Being a mom took on a completely new meaning, one I was not quite prepared for but in time, learned to roll with the punches. And let me tell you, there have been A LOT of punches. We do have our bad days but lately, there are so many good days. We have so, so much to be thankful for. We have been blessed with one of the sweetest little girls I have ever met and I am so honored to have been chosen to be her mother. Despite all the hardships and trials she has been through, I can honestly say that Kylie completely and thoroughly loves life. And because of that fact alone, I will never stop fighting for her, I will never stop trying to give her all the same experiences that her siblings get and I will stop 100 times a day and talk like all of the Seseme Street characters, because her smile lights up her entire face when she hears their voices, (not to mention the giggles and screaming of "Again! Again!")I may not get to hear her tell me everything that happened that day or be able to tell her to go get dressed and have her actually do it but I do get to watch her draw happy faces, watch her love on her baby brother, listen as she recognizes different words and letters in books and see how she loves everyone who come into her life. She has made me the mom I always knew I could be. Happy 5th Birthday Joey-girl. "I love you forever. I like you for always. As long as I'm living, my baby you'll be."
Saturday, September 19, 2009 1:54 PM CDT
5 years ago today, I was hugely pregnant and completely miserable. Little did I know that 24 hrs later, my entire world would change. It seems like it was just yesterday, while at the same time, it seems like 20 years ago. Being a mom took on a completely new meaning, one I was not quite prepared for but in time, learned to roll with the punches. And let me tell you, there have been A LOT of punches. We do have our bad days but lately, there are so many good days. We have so, so much to be thankful for. We have been blessed with one of the sweetest little girls I have ever met and I am so honored to have been chosen to be her mother. Despite all the hardships and trials she has been through, I can honestly say that Kylie completely and thoroughly loves life. And because of that fact alone, I will never stop fighting for her, I will never stop trying to give her all the same experiences that her siblings get and I will stop 100 times a day and talk like all of the Seseme Street characters, because her smile lights up her entire face when she hears their voices, (not to mention the giggles and screaming of "Again! Again!")I may not get to hear her tell me everything that happened that day or be able to tell her to go get dressed and have her actually do it but I do get to watch her draw happy faces, watch her love on her baby brother, listen as she recognizes different words and letters in books and see how she loves everyone who come into her life. She has made me the mom I always knew I could be. Happy 5th Birthday Joey-girl. "I love you forever. I like you for always. As long as I'm living, my baby you'll be."
Tuesday, August 18, 2009 7:24 AM CDT
***New pictures added under "view photos"**
Good morning. The 5th annual Kylie's Hope charity golf tournament was a huge success. We had 150 golfers this year and raised over $23,000 for TS research! A huge thank you to all of our family and friends that participated, as well as to the donors and sponsors. We could not have done it without all of you. The forecast of 90 degrees and humid was thankfully wrong, so Kylie was able to stay on the course for a while, greeting the golfers and riding around with Gee-ma. Ava had her first golfing experience and really seemed to enjoy it. Maybe we have a future golfer on our hands!
Kylie sees the neurologist this afternoon but we really don't have much to report. The few seizures she has been having all seem to happen early morning, around 5am or so. We don't want to increase her meds, maybe just re-time some of them. We also need to pick up her glasses today, which I'm sure will be a wildly pleasant experience-ha! She won't even wear sunglasses, so I am beyond doubtful we can keep these on her face. We are still waiting on the results of her ERG but we are hoping to hear something by the end of the week. Shea has been doing good with his eye patching, although the first day we did it, Kylie had a huge freak out- she thought we took out his eye! Things have settled down since then. =)
Not much else to report. I am looking forward to getting together with my seizure moms this weekend and am eagerly counting down the days until BOTH girls are in pre-school this fall. Whoooooooo-hooooooooooo!!! Thanks for checking in!
Monday, August 10, 2009 0:27 AM CDT
I think this is the longest we have ever gone between updates! Life with 3 is crazy and I am now back at work, so free time is a rarity around here. Here is a review of the last month~
Last week was the appointment week from hell. On Monday, Kylie had her MRI, to check the tumor in the ventricle of her brain. It is stable, thankfully, but she was not too happy about getting sedated. We heard lots of "All done please!'s. On Wed, we had to be at the U of MN at 530am, for her sedated ERG, which is the eye test that checks for vigabatrin toxicity. Holding her down for the eye drops was the worst experience I have been through with her lately, (although, Fri's appt topped it!) Since she no longer has her port, she has to get IVs now, which have thankfully been done after she is sedated. She had a massive freakout in the OR, when the drs and nurse came up to her, wearing masks. Not a fun day. We won't have results for 2 weeks or so. On to thursday- Shea had his 4 month check up and is weghing in at a **slim** 19 lbs, 9 oz. I almost cried a little when I saw the scale. However, that was the least of my worries, since the ped took one look at him and said, "How long have his eyes been crossed like that?" So, an order to see an eye dr asap, which brought us to Friday. Both of his eyes have been crossing, but getting worse instead of better the past few weeks. The eye dr did an exam, told us it could be just the way he was born or that the area that controls eye muscle movemovement is not totally developed yet. Either way, he did not see any eye tumors and hopefully patching his eyes will help strengthen them. He has to wear a patch for 2 hrs each day, rotating eyes every day, until the end of Oct. Then we see the dr again and if it better, great. If not, we move on to glasses and eye surgery. Bleh. I also found a white patch of skin on his arm, which can be a sign of TS. His test for TS was negative, but I have been hearing about some rare cases lately, so I also fit in a good melt down last week. His ped wants him to have an MRI, but I do not want to sedate him unless necessary. He looks good neurologically and we are hoping the white spot is a coinscidense. We see Dr Frost for Ky next week and he will also take a peek at Shea. And the topper of the week is that Ky will soon be sporting glasses. =(
Both girls finished tball, we went on a camping trip (in the pouring rain), while Ky spent the weekend at Grandma's. I am crazy and training for a 15K race in Oct and looking forward to both girls being in prek this fall! Woooo-hooooooo! Seizures are few and far between and Ky's language is exploding!
I have so much more to say but just worked 32 hrs in the 3 days and am pooped. The golf tourney is this Sat, so cross your fingers for good weather! More later----
Monday, July 13, 2009 9:46 PM CDT
Good evening. I find it harder and harder to find time to update the website, especially when things are going so well. Kylie continues to have a few seizures here and there but nothing major. We have noticed them more in her sleep than during the day, which although wrecks our sleep a bit, is actually less disturbing to her day. For a few weeks, we were having a horrendous time with her behavior- lots of hitting, tantrums and freaking out about who knows what. That has seemed a little better the past few days and we are hoping things continue to improve. We took an over night trip to Duluth last weekend and although Ava had a blast at the waterpark, it was totally not Kylie's gig. Ky has been keeping busy between school, therapy and t-ball. We are getting set to have her ERG and MRI in a few weeks, followed by a visit w/ Dr Frost. We are excited for him to see all of the progress she has made the past few months. She is putting up to 6 words together now, so we are so much more hopeful for full conversations in the near future! Although with her improved speech, we need to be careful what we say in front of her, (ahem, Gee-ma. She had Ky calling everyone a "poopy-butt" last week.)
The other 2 kiddos are doing good. Shea gets stronger and stronger every day and is MUCH calmer than he was a few weeks ago. The girls are still a little rough with him, so that is always a challenge. Ava has been so much more well behaved lately, which has been wonderful.
I am gearing up to head back to work this weekend. It has been great being off for the past 15 weeks but alas, the bills need to be paid. I also need a little more adult interaction in my life, so it will be a nice change.
Not much else going on around here. We are gearing up for the 5th Annual Kylie's Hope Charity Golf Tourney, to raise money for TS research. It takes place on 8/15. Email me if you would like more info. Thanks for checking in!
Wednesday, June 24, 2009 2:49 PM CDT
Where to begin? We continue to stay super busy and I continue to try and keep up! I have a few minutes, so I will give a quick overview~
KYLIE- She continues to do awesome on the seizure front. Still having them here and here but overall, great. Her behavior, on the other hand, has taken a complete nosedive. The past week or two, she has been whiny, really rough with her brother (hitting, pinching, shaking.....) and extra mean to her very patient sister- hitting, pulling hair and even gouged Ava's cheek last night. She likes to "tap" her friends on the head and then look to us for a reaction, then give a devilish grin when we get upset. My first thought is that the "little green monster" has finally come out and she is expressing jealousy over the new baby. She is definitely not getting as much attention as she once was but she was probably overindulged at one point too. It has really gotten bad since school has ended, so she could be bored too. She was used to constantly being on the go,go, go and now just gets to therapy a few days a week. It also could be where she is at developmentally or it could be that her tumor has grown. Who knows at this point. She starts her summer session at school next week, so that will help to keep her busy. She also started t-ball on Mondays with her therapy group and started yesterday at the rec center, playing w/ Ava. Her MRI is set up for Aug 3rd, so hoping that will give us good news and give us a little peace of mind. She is literately running where ever she goes and put together 6 words the other day, (granted, she needs a little help in the "making sense" department but I understood what she meant, "May I have read book please?" She is working hard on her manors, asking for what she wants using longer sentences and appropriately answering yes/no questions, "Is that a cat? A dog" A car?" etc. We are doing it at home, as well as working on it in therapy. She has grown a lot lately and the swim suit I bought her this spring is already too small!
AVA- She is definitely catching up to her big sister in size. they are wearing the same sizes clothes, for the most part, and are now in the same size shoe as well! Ava, although sassy as hell and loves to put up a good fight, is my "little mother" and helper. She adores being a big sister to Shea, loves holding and snuggling with him and just loves to have him around. I dropped him off at my friend Jody's house yesterday, so we could go to tball and she had a complete meltdown, thinking we were giving him away. =) She is so patient and loving to her big sister, no matter what Kylie does to her. Although she drives me nuts sometimes with her constant chatter, big ideas and dreaming up naughty things to do, I would be lost without her. She keeps me grounded and is letting me experience parenthood in ways I never though possible.
SHEA- He is also growing in leaps and bounds! He is well over 15 lbs and won't be 3 mo until next week! He has settled down into a pretty good routine- usually takes an hr morning nap and a 3-4 hr afternoon nap. He is crazy on his tummy, "army crawling" around. He is doing this new thing where his tummy is on the ground but he is almost standing on his feet and scoots his self forward. He is smiling more and loves to "talk" to us. He definitely has reflux and we can tell he is in a good amount of pain if we miss a dose of his reflux medication. His colic is getting better slowly and we are enjoying more happy moments than crabby ones. He still gets up a few times at night to eat but usually is quick and falls right back to sleep.
We took advantage on this MN heat and set the girls pool up on the deck. They LOVED splashing in there all day on Monday and will probably do it again this weekend. Neil is golfing all day on Saturday, so I need to find ways to keep them entertained. We have a few parties to go to this weekend as well, so that will help keep them busy. Next weekend, I am going to take the kids to Duluth with my parents, brother, Laura and Brooke. Neil has to work, so he will have to miss out on the fun. We are staying at the water park, which I know the girls will love. The girls both have a dentist appt on Friday and I am praying for no cavities, since they are less than stellar on letting me brush their teeth. It usually includes me pinning them down! I return back to work in a few weeks, which will be a huge transition around here but will be a much needed break for me! I still only work part-time at the hospital, so hopefully it won't be too hard on them, (or for Neil, for that matter!)
The kids are getting up from their naps, so I better go. Have a great week!
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Now that the walk is over, we are starting to prepare for the golf tournament. Due to the lovely economy, we decreased the rates this year, with the hope more people could make it. The event will again be held at Como Park Golf Course on Sat, August 15th. Registration begins at 10 and t-time is 11am. Dinner and the raffle will take place at 430pm, at Joe Sensors, in Roseville. It is a super fun event and we would love to have you come out! Please email me for more info. Also, we are looking for prizes for the raffle. Please let me know if you would like to donate anything!
PS We are making Ky's caringbridge entries into a book, a new feature caringbridge offers. Although I know many do not sign the guestbook, we would love for you to say hi, so that when she gets older, she can see who all of her supporters were!
Tuesday, June 9, 2009 9:33 PM CDT
Good evening. I can't believe I let so much time go by between updates! We have been so busy and when things finally quiet down around here, I crash! Where to begin~
The walk was a huge success and team "Kylie's Hope" did great! We had one of the biggest teams there, thanks to our wonderful family and friends. We also came in 3rd place with our fund raising efforts. Sadly, I do not remember how much we actually raised. My brain is fried! I do know that over $40,000 was raised that beautiful day! A huge thanks to everyone who donated to our cause, my awesome family for getting up at 6am and helping set up and then tear down, to Aunt Jessi, for once again getting us balloons, to my good friend Jody, for helping me get ready the night before, to Ky's pre-k teacher, Megan, and her sister, for taking awesome pictures and to Grandma Sue, for helping with he shirts/bagels/set up, etc- most days, we would be lost without you!!! And to our family and friends, who continue to show up every year and support our sweet girl, your love for us humbles me. We love you all so much! I will try and post pictures at some point. =)
Kylie continues to do fantastic. We rarely see a seizure, she actually got over her sinus infection w/o antibiotics (unheard of, around here!) and she continues to be one of the most happy and outgoing kids I have ever met. Our biggest problem, aside from her artistic abilities, is her speed. She loves to run everywhere she goes, including away from us! She is so dangerous, that we ended up gating in our front yard and my mom got us a huge pull-out fence thing to go across the driveway. Last year, we installed a security system, mainly because the alarm "dings" whenever the door is opened. It has been so nice to have, since we have 2 escape artists on our hands! Ky finished up prek for the year and will miss her friends at St Bernards, as well as "Buddy Lynn" this summer. She will start summer school on the 30th, for 4 weeks and then have all of August off. (What am I going to do with her???) We are debating whether or not to let her try riding the bus to school this summer, in case we need her to take it in the fall. I have a huge paranoia about it, so we will see. I think she would love it though. Ky and Ava start t-ball net Tuesday, at the rec center. They are excited! Ky will also play on a t-ball team from her therapy place, starting in a few weeks. They will be keeping us busy! We are looking forward to our camping trip next month. It will be nice to get away and relax with friends.
Shea is growing in leaps and bounds. Where did my little baby go? He weighed 14 lb, 15 oz at his 2 month check up! I almost died! He is 3 lbs heavier than Kylie was at the same age and I thought she was a porker! In his defense, his muscle tone is so much stronger than hers was, so to me, he doesn't seem as heavy. He holds on to me when I carry him, loves standing on his legs and loves to be on his tummy. He crabbiness is getting a little better and we have been treated to a few more smiles lately. He was diagnosed with both colic and reflux but after starting medication, he is much happier.
Now that the walk is over, we are starting to prepare for the golf tournament. Due to the lovely economy, we decreased the rates this year, with the hope more people could make it. The event will again be held at Como Park Golf Course on Sat, August 15th. Registration begins at 10 and t-time is 11am. Dinner and the raffle will take place at 430pm, at Joe Sensors, in Roseville. It is a super fun event and we would love to have you come out! Please email me for more info.
We had a chance to go to the MN Zoo last Friday, to a "Dreamnight" event, hosted by Gillette Children's, Courage Center and the Ronald McDonald House. We met up with the Hable family and had an awesome time. The girls loved the animals & riding the monorail, while we loves the free food! It was nice to get out and do something as a family. This Friday, we are looking forward to meeting the Johnson family at MOA and grabbing dinner. It will be nice to catch up with them. On Sunday, Shea and Brooke will be getting baptized, so we will have a fun day with the family.
Not much else going on around here. I'll try and update again soon!
PS We are making Ky's caringbridge entries into a book, a new feature caringbridge offers. Although I know many do not sign the guestbook, we would love for you to say hi, so that when she gets older, she can see who all of her supporters were!
Tuesday, May 26, 2009 10:31 PM CDT
***NEW PICTURES under "view photo tab", at top of page.
Good evening. This is going to be quick but I just wanted everyone to know that we got good news about Kylie's ERG. Her vision has "much improved", as compared to her previous ERG. There is one area that is still slow, (her "B wave"-whatever that is) and it could be from either the scanner itself, the anesthesia or from vigabatrin toxicity. Sooooo, she needs to have another ERG on August 5th, in which they will also do a complete eye exam while she is sedated. Hoping things stay the same or continue to improve. Still seeing occasional seizures but nothing to get worked up about. Ky finishes pre-school next week and then has a few weeks off before her summer session starts. She is also signed up to play 2 nights of t-ball this summer, one night of it being with Ava. That should go over well! They are literately keeping us on our toes and we are looking at ANY way to wear them out! Kylie has been busy perfecting her art work on anything in our house that she can get her hands on (cupboards, counter tops, books, the dishwasher, the blender.........) and of course, all in permanent marker! She has been battling the crud for the past week or so and tonight it has really seemed to hit her hard. We are trying to limit the amount of antibiotics she is on, so we are really hoping she can get over this hump without any meds.
Shea is getting better on getting his days and nights figured out. He is still fussy at times and we think it's a combination of reflux/constipation/his hernia. He has her 2 mo check-up in a few weeks, so hopefully his dr will have some ideas. He had a bacterial infection in his eye last week, which was not pleasant to look at. We are getting a few smiles out of him here and there and today, watched as he "army crawled" /scooted right off his blanket and onto the play mat. I think his wicked temper helped him get there!
As for Ava, she is a whole other story to be saved for another day. Let's just say she is a cruise director/little mother/Jackal & Hyde, all rolled into one.
We welcomed baby Brooke Marie Ueland into the family on Friday, (parents are my brother Ben & Laura). She is beautiful and the girls are thrilled to finally have a little cousin, (whom I am sure they will be tormenting soon!) We are going to bring dinner over to them tomorrow. On Friday, we are going to a bonfire, put on by Ava's preschool she will be attending this fall. I can not believe my little girl will be leaving me for the first time to be w/ people outside of our family. While I am screaming "THANK YOU GOD!!!" Love the kid but she is always dreaming up naughty and crazy things to do. I can only imagine the phone calls I will be getting from the principal.
Our big walk is already this Saturday and I have a ton to do to get ready for it still. If you want to come join team "Kylie's Hope", we will be at Lake Phalen, in St Paul, at 8am on Saturday. The walk starts at 9am. If you want to make a donation to Kylie's team, go to http://www.firstgiving.org/mariagibbons . All donations are tax-deductible. Thank you for your support!!
This ended up longer than I planned. It's already 1055pm and I still need to hit up the grocery store. Have a great night!!
PS We are making Ky's caringbridge entries into a book, a new feature caringbridge offers. Although I know many do not sign the guestbook, we would love for you to say hi, so that when she gets older, she can see who all of her supporters were!
Monday, May 18, 2009 11:41 PM CDT
Hi everyone. We should hear back in the next few days about Kylie's ERG (her eye test, that checks for the retinal damage). We are crossing all fingers and toes that things will remain unchanged since March. We have seen a few more seizures lately and last week, I had the horrible experience of watching Ky fall all the way down our basement stairs. I heard her talking to our bulldog, Buster, )whom she calls "Wolf"). She was saying, "Cheese Wolf!" and I knew immediately what she was doing. She got our old camera, which was hanging by the steps, and was trying to take his picture. I'm not sure if he knocked her down the stairs or if she had a seizure and fell but she was seizing pretty good when I got to her at the bottom of the steps. She had a pretty good gash on her shoulder, her wrist, knee and lip but was ok otherwise. I for sure thought she broke her neck! Aside from that, she is doing pretty good. She is following directions pretty well, has been acting out the letters of the alphabet, ("Y!" "T!" "O") and has been running everywhere she does. Unfortunately, that includes running into the street, so we are getting creative on ways to keep her in the yard. She has also been creative, coloring on everything and anything she can get her hands on, including our counter tops, pergo floor, newly painted cabinets, walls, our couch, the blender...... Hoping this is a phase that ends soon!! She is starting to catch the nasty cold Ava has, so we are hoping it doesn't turn into her usual full blown sinus and ear infection.
We are not planning on much for the weekend. Kylie has taken a huge interest in our garden, so maybe we will do some planting. Shea still has his days and nights mixed up, so we are doing some "baby boot camp" to try and get him on a better schedule. I took the kids to the zoo today, which wasn't as horrible as I was expecting. It was just nice to get out and enjoy the beautiful weather. We are excited for summer and for Ky's schedule to slow down a little. She will be done with pre-school the first week of June and then has a few weeks off before she starts her summer session of school, which is 2 days a week, most of July. I am not sure what days she will have therapy this summer but we also signed her and Ava up for t-ball this summer, at the rec center. Hopefully they will have fun! We don't have too many medical appointments set for the summer, aside from her annual eye exam and an MRI in August. She will also follow up w/ her ENT for a hearing test and to get her remaining PE tube out, as will Ava.
Less than 2 weeks until the walk! If you would like to sponsor Kylie, please go to http://www.firstgiving.com/mariagibbons and make a tax-deductible donation. We are way behind our goal and every dollar helps!! If you would like to join us on Saturday, May 30th, at Lake Phalen, in St Paul, we would love for you to be a part of "Kylie's Hope"! It should be a fun day! Again, thank you so much for your support! Have a great week!
************************************************************
2009 Step Forward to Cure TSC Walk / 5K run~ Sat May 30th at Lake Phalen, in St Paul.
2009 Kylie's Hope Charity Golf Tourney- Sat Aug 15th at Como Park Golf Course, in St Paul
Sunday, May 10, 2009 12:20 PM CDT
Happy Mother's Day to all you wonderful mommies out there!
To my sweet Kylie Jo~
Thank you for making me the mommy I am today. When you were born, I had all of these hopes and dreams for you. I still have hopes and dreams for you- they have just changed a little bit. You have taught me patience and perseverance. You have brought some of the strongest women into my life and helped to make them some of my closest friends. You have helped me overcome my fear of public speaking and have helped me to see that just because some people are different, their lives are not any less worthwhile than the rest of us. In some cases, they may even be more so. You have helped me to not judge people by their first impression- they may have just lost a child, have been given a horrible diagnosis or just feel overwhelmed with what life has handed them.
You have come so far these past 4 1/2 years. You work so hard every single day, never giving up, and despite the worst days, you still have a smile on your face. You inspire me to be a better mother, daughter, sister and friend. I would do anything for you and will continue to help you grow into the best person you can be. Just lead the way. I love you, sweet girl.
Love Mommy
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Things have been going pretty good around here. Kylie had her ERG (sedated eye test), on Wed. Big thanks to Gee-ma for going with this time, so I could stay home with the other kids. Ky did great and we should have the results back in 2 weeks. Please pray for good results!!
We had a really nice surprise for Ky last week. Her therapists, from Kids Abilities, nominated her for an award from Kids Wishes Network (I think!). It is an award for kids who have been through a lot of stuff medically. Her story was chosen for "Hero of the Month" and she got a certificate, medal, a Hero t-shirt and best of all, a very generous gift card to Walmart. We went on a little shopping spree for her and bought her own portable DVD player, so she can watch Elmo at her appointments and in the car to therapy. She loves it!! She also got a few DVDs, (Elmo, of course), some gardening stuff, since she is really into our garden this year, some chalk and coloring stuff and a new bike helmet for both her and Ava. Thank you so much to her wonderful therapists, for helping to put a HUGE smile on her face! After all she has been through the past month, it was nice to have something to smile about.
The other kids are doing well. Ava has calmed down a bit, since the Dora flashlight episode and our toilet has been working well the past week. =) She sounds a little wheezy today, so I may bring her in for a check-up in the next few days. Shea has been a little less fussy, although his night time sleeping is still a little bit less than to be desired. We are getting treated to little smiles from him now and then and he has been cooing in "conversation" with us. I forgot how cute it is.
The walk is quickly approaching, in less than 2 weeks now. We are going to be ordering "Kylie's Hope" t-shirts in the next few days, so if you want one and have not emailed me, please let me know asap. I believe the cost will be under $7 and you can mail me a check. Other than that, I hope everyone is enjoying their Mother's Day! I got to sleep in this morning and we are enjoying a low-key day. Have a great day!!
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The walk is quickly approaching, so if you would like to join team "Kylie's Hope" or sponsor our team, please follow the link below. Also, we are going to try and order "Kylie's Hope" t-shirts y the end of next week, so if you would like to buy one, please contact me and mail the money as soon as possible. Hope everyone has a wonderful weekend!!
************************************************************
I am busy getting ready for this year's "Step Forward to Cure TSC" walk/5K run. It will take place on Sat May 30th, at Lake Phalen, in St Paul. If you would like to join team "Kylie's Hope", we would love to have you! We are ordering new t-shirts as well this year, so if you would like to order one, please send me your name(s) and sizes. I believe the cost is going to be about $6-6.50 per shirt. You can sponsor Kylie by making a donation at http://www.firstgiving.com/mariagibbons , as well as sign up to walk or run the 5K. We hope to see you there!
************************************************************
Dear Friends,
As we near the start of the Journey For Jess the time has come to ask each of you for your help. Would you be willing to contact your friends, families and local businesses about the possibility of them donating to the Journey For Jess?
We are making up a sponsor packet for you to give to potential sponsors and need to get an estimate for how many we will need. The packets are somewhat expensive so we are asking that you use them to focus on businesses and individuals that you have a relationship with to keep costs down. We would like for you to start contacting people in March, so if you are willing to contact people for us please let us know how many sponsor packets you think you will need before February 13th. Once we have an estimate we will order the packets and get them to you by the beginning of March.
We are also making an informational flyer/postcard that is less expensive that you can give out that will direct people to the website or to contact us by email for further information. These will be available in early March as well.
Thank you all so much for helping us with our Journey For Jess.
The Beechers
************************************************************
2009 Step Forward to Cure TSC Walk / 5K run~ Sat May 30th at Lake Phalen, in St Paul.
2009 Kylie's Hope Charity Golf Tourney- Sat Aug 15th at Como Park Golf Course, in St Paul
Monday, May 4, 2009 0:20 AM CDT
Hi all. I am up with a fussy baby and a sick girl. Ava spiked a temp tonight and has been restless, twitching and moaning in her sleep. Could it have been from eating the used gum she found at the ball field tonight? Who knows. I am hoping it's a passing bug, one she keep to herself!
Our easy going little guy has become the most high maintenance one of the bunch- fussy at night, prefers to be held 24/7 and eating non-stop. To all the people who told me going from 2 kids to 3 was much easier than going from 1 to 2 kids- hahahahahahahahahahaha. Not in this house! I am averaging 2-3 hrs of sleep a night, the girls have been monsters and my house looks like a tornado hit it. Our latest escapade included a Dora flashlight being flushed down the toilet. Let's just say removing the toilet did not make for a happy daddy.
As for the star of the show, Ky's incision is pretty much healed. She tends to pick at it, so we are trying to keep little fingers away from it. Seizure wise, things have been great. We have seen a very minimal amount the past few weeks, which is great. Mind you, we are not able to have our eyes on her 24/7, so hopefully no one is judging us if we happen to miss a few, but we can not sit and obsess over every little seizure she has. If that were the case, the life we live would be sad and depressing- not the way we want to raise our girl. We only get truly worried if she seems to be affected from her seizures and right now, she is doing great. She does need a few prayers on Wed. She is having her repeat ERG and we are hoping and praying for good results.
Our good news of the week- Shea was officially cleared from having TS. Now we can relax a bit and stop obsessing over every little twitch.
I'll update again later this week- trying to feed Shea and type left handed.
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The walk is quickly approaching, so if you would like to join team "Kylie's Hope" or sponsor our team, please follow the link below. Also, we are going to try and order "Kylie's Hope" t-shirts y the end of next week, so if you would like to buy one, please contact me and mail the money as soon as possible. Hope everyone has a wonderful weekend!!
************************************************************
I am busy getting ready for this year's "Step Forward to Cure TSC" walk/5K run. It will take place on Sat May 30th, at Lake Phalen, in St Paul. If you would like to join team "Kylie's Hope", we would love to have you! We are ordering new t-shirts as well this year, so if you would like to order one, please send me your name(s) and sizes. I believe the cost is going to be about $6-6.50 per shirt. You can sponsor Kylie by making a donation at http://www.firstgiving.com/mariagibbons , as well as sign up to walk or run the 5K. We hope to see you there!
************************************************************
Dear Friends,
As we near the start of the Journey For Jess the time has come to ask each of you for your help. Would you be willing to contact your friends, families and local businesses about the possibility of them donating to the Journey For Jess?
We are making up a sponsor packet for you to give to potential sponsors and need to get an estimate for how many we will need. The packets are somewhat expensive so we are asking that you use them to focus on businesses and individuals that you have a relationship with to keep costs down. We would like for you to start contacting people in March, so if you are willing to contact people for us please let us know how many sponsor packets you think you will need before February 13th. Once we have an estimate we will order the packets and get them to you by the beginning of March.
We are also making an informational flyer/postcard that is less expensive that you can give out that will direct people to the website or to contact us by email for further information. These will be available in early March as well.
Thank you all so much for helping us with our Journey For Jess.
The Beechers
************************************************************
2009 Step Forward to Cure TSC Walk / 5K run~ Sat May 30th at Lake Phalen, in St Paul.
2009 Kylie's Hope Charity Golf Tourney- Sat Aug 15th at Como Park Golf Course, in St Paul
Saturday, April 25, 2009 0:19 AM CDT
Just a quick update~
Things are back to normal around here. We took Ky to the dr today, to have her incision looked at and the dr restarted her on oral antibiotics for 10 more days. The site is healing but still is draining quite a bit of pus. Hoping it will be fully healed in another week or so. We had Ky's IEP meeting on Thurs and it went great. She definitely has a wonderful team working with her and I was so happy to hear that everyone is on the same page as to the goals she has met the past year and what they will be working on next year. Our main focus next year will be to work on her "self help" skills, to get her on par with kids of her own age group. We are thankful she will have 1 more year of preschool to help get he caught up, before she enters the big, bad world of kindergarten. She has made so much progress this past year and baring any big seizures, we are excited to see the progress she will make next year. She will go to school 2 days a week in July and then will go 4 afternoons a week in the fall, 2 days of regular pre-k and 2 days of special ed. She will also continue with her private therapy of PT, OT and Speech, 3 days a week. We are debating whether or not to let her take the bus in the fall. Basically, Mom has to get over her fear of it first! It will also depend on whether or not we have a PCA that will be able to drive her back and forth. Seizure wise, Ky continues to do fantastic. She had a little flare up of seizures last week, when her infection was at it's worst, but things have seemed to calm down greatly. Now, we are keeping all fingers and toes crossed that she can stay on her vigabatrin. She has a repeat ERG on 5/6, so we will see.
Miss Ava has REALLY been keeping us on our toes lately. She is constantly dreaming up new ways to drive mom crazy and cracks us up with the things that come out of her mouth. Gee-ma took her to the zoo today and she insisted she was going to wear her blue sweater, which we were having a hard time talking her out of. The problem was that all she had on was Elmo underwear, despite her insistence that no, she WAS wearing the blue sweater. She has a great, very active imagination. I'll try to post a picture of the ensemble that she did end up wearing.
Shea is doing great- he is a very easy going baby, aside from having his days and nights mixed up, as well as preferring to be held 24/7. But he is so sweet and the girls adore him. He has already gained 2 lbs since he was born, which I don't doubt, as I feel like I spend a good chunk of the day feeding him.
The walk is quickly approaching, so if you would like to join team "Kylie's Hope" or sponsor our team, please follow the link below. Also, we are going to try and order "Kylie's Hope" t-shirts y the end of next week, so if you would like to buy one, please contact me and mail the money as soon as possible. Hope everyone has a wonderful weekend!!
************************************************************
I am busy getting ready for this year's "Step Forward to Cure TSC" walk/5K run. It will take place on Sat May 30th, at Lake Phalen, in St Paul. If you would like to join team "Kylie's Hope", we would love to have you! We are ordering new t-shirts as well this year, so if you would like to order one, please send me your name(s) and sizes. I believe the cost is going to be about $6-6.50 per shirt. You can sponsor Kylie by making a donation at http://www.firstgiving.com/mariagibbons , as well as sign up to walk or run the 5K. We hope to see you there!
************************************************************
Dear Friends,
As we near the start of the Journey For Jess the time has come to ask each of you for your help. Would you be willing to contact your friends, families and local businesses about the possibility of them donating to the Journey For Jess?
We are making up a sponsor packet for you to give to potential sponsors and need to get an estimate for how many we will need. The packets are somewhat expensive so we are asking that you use them to focus on businesses and individuals that you have a relationship with to keep costs down. We would like for you to start contacting people in March, so if you are willing to contact people for us please let us know how many sponsor packets you think you will need before February 13th. Once we have an estimate we will order the packets and get them to you by the beginning of March.
We are also making an informational flyer/postcard that is less expensive that you can give out that will direct people to the website or to contact us by email for further information. These will be available in early March as well.
Thank you all so much for helping us with our Journey For Jess.
The Beechers
************************************************************
2009 Step Forward to Cure TSC Walk / 5K run~ Sat May 30th at Lake Phalen, in St Paul.
2009 Kylie's Hope Charity Golf Tourney- Sat Aug 15th at Como Park Golf Course, in St Paul
Saturday, April 18, 2009 10:08 PM CDT
Good evening. We are home and things are getting back to normal. Ky got her drain removed this morning and they switched over her IV antibiotics to oral. The hole in her chest is quite larger than we expected but the surgeon was please with how it looked. We are packing it with gauze and he thought it would heal within a couple days. We have to watch Ky close though, as she had the dressing off and was picking at it during her nap. Neil was beyond horrified and let's just say he will not be doing any packing or dressing changes! Ava had a really hard time leaving Kylie at the hospital the past few nights, so hopefully we won't be repeating any hospital stays anytime soon. She was in tears when we left last night, saying, "I want Kylie! Hers is my friend! I pway wif her a lot!" About broke my heart!
Anyway, we got caught up on some spring cleaning when we got home and settled. Ky was a little out of sorts but after a along nap, was back to her cheery self. The girls had a good time playing outside this evening. We have to follow up w/ Ky's dr this week. We also have her IEP meeting at school, which will hopefully go well. Hoping she can also get back into her routine of school and therapy. That's all fo now. I'm going to try and update some new pictures when I get a chance! Have a great weekend!
************************************************************\
I am busy getting ready for this year's "Step Forward to Cure TSC" walk/5K run. It will take place on Sat May 30th, at Lake Phalen, in St Paul. If you would like to join team "Kylie's Hope", we would love to have you! We are ordering new t-shirts as well this year, so if you would like to order one, please send me your name(s) and sizes. I believe the cost is going to be about $6-6.50 per shirt. You can sponsor Kylie by making a donation at http://www.firstgiving.com/mariagibbons , as well as sign up to walk or run the 5K. We hope to see you there!
************************************************************
Dear Friends,
As we near the start of the Journey For Jess the time has come to ask each of you for your help. Would you be willing to contact your friends, families and local businesses about the possibility of them donating to the Journey For Jess?
We are making up a sponsor packet for you to give to potential sponsors and need to get an estimate for how many we will need. The packets are somewhat expensive so we are asking that you use them to focus on businesses and individuals that you have a relationship with to keep costs down. We would like for you to start contacting people in March, so if you are willing to contact people for us please let us know how many sponsor packets you think you will need before February 13th. Once we have an estimate we will order the packets and get them to you by the beginning of March.
We are also making an informational flyer/postcard that is less expensive that you can give out that will direct people to the website or to contact us by email for further information. These will be available in early March as well.
Thank you all so much for helping us with our Journey For Jess.
The Beechers
************************************************************
2009 Step Forward to Cure TSC Walk / 5K run~ Sat May 30th at Lake Phalen, in St Paul.
2009 Kylie's Hope Charity Golf Tourney- Sat Aug 15th at Como Park Golf Course, in St Paul
Thursday, April 16, 2009 2:45 PM CDT
Ky had surgery this morning and had her port removed. The surgeon was suprised at how infected it was and he said it must have been brewing for quite awhile, (apparently, since it was put in). The infection went well under her port, quite deep, and has damaged the tissue/muscle/fat surrounding the port. The surgeon cleaned it out and she has a drain in until Monday. He is not sure if it will heal or not and if it doesn't, she will either need to have it packed or they will need to place a wound vac over the site (like that will be a good time)! We are waiting to see the infectious disease dr, to see if she is on the right antibiotics and for how long she will be on them, as well as if she will need to get a PICC line placed. It's like deja vu being on 7940, with Ky hooked up to IVs and trying to find discrete spots to nurse a 2 week old. Apparently my dream of having a hospital-stay maternity leave are proving to be unfounded. More later~ (And Happy Birthday to Gee-ma!!)
Wednesday, April 15th, 2009 10:02 PM
Just a quick update~
Kylie got an unexpected admission to Children's Hospital tonight. She has been acting fine, aside from pointing to her port and saying "Owie". We had her in to the dr on Monday and she started antibiotics for a sinus infection, an infection on the back of her legs and a possible port infection. Today, homecare came to flush her port and when the nurse drew back, she drew off a vial of pus. Then, the incision above her port site started to ooze. So, they drew a bunch of labs and cultures, started IV antibiotics and she is going into the OR in the morning to have her site debrided and possibly have the port taken out. In any case, it sounds like she may be on IV antibiotics for a few weeks and if that is the case, I'm not sure what they will use for access. They can't use the port and she clots off PICC lines super easily. Shea will be 2 weeks old tomorrow and I am having flash backs~ when Ava was 2 weeks old, KY was up to her old tricks and landed in the hospital for almost 5 weeks. Hopefully this will be a quick visit! Ky has her dance recital tomorrow evening and we were SO hoping to make it, although even if we do, I doubt she will be up for dancing. We'll see what happens. She is back on 7940 and is being well taken care of. Although she has been doing great w/ her seizures, she decided to have 3 right when we got here. Hoping it is just from the infection and not a sign of things to come! Neil is still off work, so he is going to stay tonight and I am heading home w/ Shea. Cross your fingers for an easy recovery and quick stay!
****************************************
Sunday, April 12, 2009 8:13 PM CDT
Happy Easter everyone! We had a very low-key, relaxing day. We looked for eggs and baskets this morning (fun!), went to church (far from fun) and had brunch at my parent's house. Other than that, just relaxing. We have spent the past week adjusting to having 3 kids, which is not as easy as I was hoping! Although Ava makes sure she is getting enough attention =), I sometimes feel like Ky is not getting enough, especially since she has been so content to play on her computer and pretty much entertains herself. Hopefully by being back at school this week, along w/ therapy, I can rest and get things done while she is gone and spend some good snuggle time with her when she was home. I just have to convince her snuggle time is more important than Elmo!
Although her incision site above her port looks great now, the actual port itself looks pretty rough, that, combined with a rapidly growing rash on her legs, will take us to the peds office in the morning. We were there a few times last week- with Ava for an ear/sinus infection and w/ Shea, for his circumcision and bilirubin check. All was well with him, aside from our ped thinking his hernia may need to be surgically repaired in the future. We thought it went down but it is still pretty big. It's not a for sure thing, so we will see what happens. We also had him tested for TS last week, so any and all prayers for negative results would be greatly appreciated!
Ky's repeat ERG will be on 5/6. Hoping we will get reassuring results. We do suspect she does need glasses though, especially since she has to get 2 inches from the computer screen every time she uses it. She continues to do well with her seizures. Although she is still having them, they are very few and far between.
I know there is more to share but the baby fell asleep, so I am going to try and get a quick soak in the tub. Hope everyone had a blessed Easter!
************************************************************
I am busy getting ready for this year's "Step Forward to Cure TSC" walk/5K run. It will take place on Sat May 30th, at Lake Phalen, in St Paul. If you would like to join team "Kylie's Hope", we would love to have you! We are ordering new t-shirts as well this year, so if you would like to order one, please send me your name(s) and sizes. I believe the cost is going to be about $6-6.50 per shirt. You can sponsor Kylie by making a donation at http://www.firstgiving.com/mariagibbons , as well as sign up to walk or run the 5K. We hope to see you there!
************************************************************
Dear Friends,
As we near the start of the Journey For Jess the time has come to ask each of you for your help. Would you be willing to contact your friends, families and local businesses about the possibility of them donating to the Journey For Jess?
We are making up a sponsor packet for you to give to potential sponsors and need to get an estimate for how many we will need. The packets are somewhat expensive so we are asking that you use them to focus on businesses and individuals that you have a relationship with to keep costs down. We would like for you to start contacting people in March, so if you are willing to contact people for us please let us know how many sponsor packets you think you will need before February 13th. Once we have an estimate we will order the packets and get them to you by the beginning of March.
We are also making an informational flyer/postcard that is less expensive that you can give out that will direct people to the website or to contact us by email for further information. These will be available in early March as well.
Thank you all so much for helping us with our Journey For Jess.
The Beechers
************************************************************
2009 Step Forward to Cure TSC Walk / 5K run~ Sat May 30th at Lake Phalen, in St Paul.
2009 Kylie's Hope Charity Golf Tourney- Sat Aug 15th at Como Park Golf Course, in St Paul
Sunday, April 12, 2009 8:13 PM CDT
Happy Easter everyone! We had a very low-key, relaxing day. We looked for eggs and baskets this morning (fun!), went to church (far from fun) and had brunch at my parent's house. Other than that, just relaxing. We have spent the past week adjusting to having 3 kids, which is not as easy as I was hoping! Although Ava makes sure she is getting enough attention =), I sometimes feel like Ky is not getting enough, especially since she has been so content to play on her computer and pretty much entertains herself. Hopefully by being back at school this week, along w/ therapy, I can rest and get things done while she is gone and spend some good snuggle time with her when she was home. I just have to convince her snuggle time is more important than Elmo!
Although her incision site above her port looks great now, the actual port itself looks pretty rough, that, combined with a rapidly growing rash on her legs, will take us to the peds office in the morning. We were there a few times last week- with Ava for an ear/sinus infection and w/ Shea, for his circumcision and bilirubin check. All was well with him, aside from our ped thinking his hernia may need to be surgically repaired in the future. We thought it went down but it is still pretty big. It's not a for sure thing, so we will see what happens. We also had him tested for TS last week, so any and all prayers for negative results would be greatly appreciated!
Ky's repeat ERG will be on 5/6. Hoping we will get reassuring results. We do suspect she does need glasses though, especially since she has to get 2 inches from the computer screen every time she uses it. She continues to do well with her seizures. Although she is still having them, they are very few and far between.
I know there is more to share but the baby fell asleep, so I am going to try and get a quick soak in the tub. Hope everyone had a blessed Easter!
************************************************************
I am busy getting ready for this year's "Step Forward to Cure TSC" walk/5K run. It will take place on Sat May 30th, at Lake Phalen, in St Paul. If you would like to join team "Kylie's Hope", we would love to have you! We are ordering new t-shirts as well this year, so if you would like to order one, please send me your name(s) and sizes. I believe the cost is going to be about $6-6.50 per shirt. You can sponsor Kylie by making a donation at http://www.firstgiving.com/mariagibbons , as well as sign up to walk or run the 5K. We hope to see you there!
************************************************************
Dear Friends,
As we near the start of the Journey For Jess the time has come to ask each of you for your help. Would you be willing to contact your friends, families and local businesses about the possibility of them donating to the Journey For Jess?
We are making up a sponsor packet for you to give to potential sponsors and need to get an estimate for how many we will need. The packets are somewhat expensive so we are asking that you use them to focus on businesses and individuals that you have a relationship with to keep costs down. We would like for you to start contacting people in March, so if you are willing to contact people for us please let us know how many sponsor packets you think you will need before February 13th. Once we have an estimate we will order the packets and get them to you by the beginning of March.
We are also making an informational flyer/postcard that is less expensive that you can give out that will direct people to the website or to contact us by email for further information. These will be available in early March as well.
Thank you all so much for helping us with our Journey For Jess.
The Beechers
************************************************************
2009 Step Forward to Cure TSC Walk / 5K run~ Sat May 30th at Lake Phalen, in St Paul.
2009 Kylie's Hope Charity Golf Tourney- Sat Aug 15th at Como Park Golf Course, in St Paul
Saturday, April 4, 2009 11:19 AM CDT
As you can see from the picture above, having 3 kids does not equal nicely posed pictures! We are thrilled to announce that Sheamus James Gibbons (who will be called "Shea"- pronounced "Shay") was born on 4/2/09 at 5:35pm. He is a peanut, weighing 7 lbs, 6 oz and only 18 inched long- a full 2 inches shorter than Kylie, who was born the same gestational week as him! I guess he really will be taking after his daddy! He looks great and has no signs of TS. We will still have him tested, sometime next week, in the out patient lab. He does have a ventral abdominal hernia, that at first, we thought he would need surgery on, but has gone down greatly and the dr says it should go away completely. He has much more hair than the girls did and dark blue eye, which we think will turn brown like Ava's. Ky's were crystal blue from the start. He has his days and nights mixed up, so I think it will take us awhile to get in a real routine. Thankfully, Neil is off for the next 2 weeks, so I should have lots of help. He is thrilled to have another guy in the house. Ava's response to having a brother was, "NOOOOOOOOOOOOOOOOOOOOO!!!!!!" (she had her heart set on a sister, but is much more excited now that she has met him). Ky seems to like him, although she is much more into playing and worrying about herself. =) She has given him lots of kisses though. We are getting ready to head home from the hospital and are excited to see the girls.
Kylie really kept us on our toes last week. I can't remember where I left off with her but after a week of fevers, lethargy, vomiting and totally not being herself, we found out she had a staph infection in her blood, from her new port. After lots of labs and antibiotics, she is doing much better and is back to her old self. She missed a week of school and therapy, which is a bummer but has learned to turn the "On-Demand" station on, to find Elmo. We did get some discouraging news from her eye doctor. The ERG she had done a few weeks back did show that the miracle drug she has been on, Vigabatrin, is becoming toxic to her retinas. She has been on the medication for 1.5 years, so we were shocked and very disheartened to hear the news. After discussing things with her doctor, he said he wants her to have another ERG next month, to compare it to the one done in March. If it looks the same, we will continue the ERGs every 2 months. If it looks worse, we need to meet with Dr Frost and decide if her vigabatrin dose needs to be lowered, stopped completely or we keep her on it. We will have to decide if we risk losing her peripheral vision completely and keep her under good seizure control, as well as wonderful developmental gains (she is recognizing full words now and telling me what they are, for God's sake) or do we save her vision and take her off the drug, only to have the seizures most likely come back. She has not been in the hospital since starting the Vigab and we would love to keep things that way. So, until next month, we wait. And we pray, that God will guide us in the right direction and help us make the best decision for our sweet girl. As always with this disease, just when you think all is well, the rug gets pulled out from under you. Anyway, thanks for continuing to check in with us! Your support means so much!!
************************************************************
I am busy getting ready for this year's "Step Forward to Cure TSC" walk/5K run. It will take place on Sat May 30th, at Lake Phalen, in St Paul. If you would like to join team "Kylie's Hope", we would love to have you! We are ordering new t-shirts as well this year, so if you would like to order one, please send me your name(s) and sizes. I believe the cost is going to be about $6-6.50 per shirt. You can sponsor Kylie by making a donation at http://www.firstgiving.com/mariagibbons , as well as sign up to walk or run the 5K. We hope to see you there!
************************************************************
Dear Friends,
As we near the start of the Journey For Jess the time has come to ask each of you for your help. Would you be willing to contact your friends, families and local businesses about the possibility of them donating to the Journey For Jess?
We are making up a sponsor packet for you to give to potential sponsors and need to get an estimate for how many we will need. The packets are somewhat expensive so we are asking that you use them to focus on businesses and individuals that you have a relationship with to keep costs down. We would like for you to start contacting people in March, so if you are willing to contact people for us please let us know how many sponsor packets you think you will need before February 13th. Once we have an estimate we will order the packets and get them to you by the beginning of March.
We are also making an informational flyer/postcard that is less expensive that you can give out that will direct people to the website or to contact us by email for further information. These will be available in early March as well.
Thank you all so much for helping us with our Journey For Jess.
The Beechers
************************************************************
2009 Step Forward to Cure TSC Walk / 5K run~ Sat May 30th at Lake Phalen, in St Paul.
2009 Kylie's Hope Charity Golf Tourney- Sat Aug 15th at Como Park Golf Course, in St Paul
Wednesday, March 25, 2009 1:43 PM CDT
Kylie has been keeping us pretty busy the past few days. After her ERG last week, she was really sleepy for a few days and not quite herself. On Monday, Uncle Ben and Laura took the girls to Chuck E Cheese. We had noticed over the weekend that the incision of her port was red and swollen. Ben called on Monday night and said Ky had a fever and her port site looked a little pus draining. We brought her into the ER, which was a joke. The dr we saw didn't do much, except complain that her crying would make it hard to examine her. Long story short, her prescribed oral antibiotics and sent us on our way. By yesterday morning, she woke up moaning and had a temp of 104. Back to the ER we went. Our concern was that she could have an infection in her blood, since the catheter of her port is positioned up to the arch of her aorta. The dr we saw yesterday was great and drew some labs, as well as a set of blood cultures. She didn't have a fever the entire time we were there, so we thought she was on the path to recovery. She napped when she got home and then woke up with another 104 temp. We gave her motrin and her fever climbed to 105. After a lukewarm bath, it went down to 103. She woke up this morning w/ a 102 temp, which came down nicely after more motrin. I talked w/ her ped this morning and she said Ky's blood cultures did come back positive. She is not sure if it was a contaminate when they drew the cultures but based on her high fevers, it is a little suspicious. She is waiting on the 2nd set of cultures to come back and is sending us to Children's tonight to have more blood drawn. Depending on the results, Ky may have to start IV antibiotics and there is the possibility her new port will need to come out. I am hoping home care can set us up w/ antibiotics and we can give them to her. Not real good timing but hoping this will all be cleared up before the baby gets here. I am exhausted and sick of all the running around. I work my last weekend at the hospital before going on maternity leave, so I am hoping I can make it through it!
I did get a chance to together w/ my 7940 moms last weekend. It was great to catch up with everyone and to relax! I will try and keep you posted about the port situation but if you don't hear from me, I'll update after the baby gets here!!
************************************************************
I am busy getting ready for this year's "Step Forward to Cure TSC" walk/5K run. It will take place on Sat May 30th, at Lake Phalen, in St Paul. If you would like to join team "Kylie's Hope", we would love to have you! We are ordering new t-shirts as well this year, so if you would like to order one, please send me your name(s) and sizes. I believe the cost is going to be about $6-6.50 per shirt. You can sponsor Kylie by making a donation at http://www.firstgiving.com/mariagibbons , as well as sign up to walk or run the 5K. We hope to see you there!
************************************************************
Dear Friends,
As we near the start of the Journey For Jess the time has come to ask each of you for your help. Would you be willing to contact your friends, families and local businesses about the possibility of them donating to the Journey For Jess?
We are making up a sponsor packet for you to give to potential sponsors and need to get an estimate for how many we will need. The packets are somewhat expensive so we are asking that you use them to focus on businesses and individuals that you have a relationship with to keep costs down. We would like for you to start contacting people in March, so if you are willing to contact people for us please let us know how many sponsor packets you think you will need before February 13th. Once we have an estimate we will order the packets and get them to you by the beginning of March.
We are also making an informational flyer/postcard that is less expensive that you can give out that will direct people to the website or to contact us by email for further information. These will be available in early March as well.
Thank you all so much for helping us with our Journey For Jess.
The Beechers
************************************************************
2009 Step Forward to Cure TSC Walk / 5K run~ Sat May 30th at Lake Phalen, in St Paul.
2009 Kylie's Hope Charity Golf Tourney- Sat Aug 15th at Como Park Golf Course, in St Paul
Wednesday, March 18, 2009 10:57 PM CDT
Where to begin? We have had so much going on since my last update, I'm not sure where to start. Going back to last Thursday, Kylie and I spent most of the day at Children's Hospital. Neil ended up meeting us down there, which was a huge help. She went in to have a dye study done on her port a cath and ended up having the entire thing replaced. A quick and simple surgery ended up taking about 2 hours, due to how the old port was in and how they wanted the new one to fit. The dr said the old one was bent in a way that looked like it irritated her vein, so her cut a hole lower in her vein (gross, I know), and put the port in deeper, so hopefully it will irritate her less. The surgery itself was the least traumatic part of the day. Having not been in the hospital for about 1.5 years (whoooo-hooo!), she has become completely desensitized to what actually goes on there. Not to mention, she is older and wiser and has decided the hospital and procedures are completely not her thing. She freaked out for getting her blood pressure taken, her temp done and her oxygen checked. Hell, she didn't even want them to put an id band on her! I drew the short straw in taking her back to the OR- watching her big blue eyes get huge as she took in the bright lights and then the big crocodile tears rolling down her cheeks as she saw everyone in masks was almost enough for this mommma to join in with tears, although the worst part was having to hold her down while they put the gas mask on her- and trust me, she could've cared less what flavor they put in the mask! Bless the nurses though- they decided to place an IV after she was knocked out, which is what we will be requesting from now on! Anyway, her port is working good, we got her labs drawn and away we went. I worked this weekend but unfortunately, on Friday, Kylie fell down our basement steps. Thank God my sister caught her right before she hit the bottom- Kari said that the way she fell, she would've landed on the top of her head and probably have broken her neck. She did hurt her ankle a bit and didn't walk all weekend but is doing better this week. On Monday, both Ky and I were throwing up. Not sure if it was due to pregnancy on my part and sympathy on Ky's, or due to the norovirus running through my work. Either way, not a good time. Today, Neil and I spent the day at the hospital again w/ Miss Kylie, although this time it was at the U of MN, for Ky's ERG (which is the sedated eye exam that checks for retinal toxicity, from her seizure medication). We checked in at 8am and did not get out until after 5pm. Needless to say, we were not happy with how unorganized things were and how behind they were, although again, we got stellar care from the nursing staff. If I though last week was traumatizing for her at Children's, with that experience fresh in her mind, today was 100x worse. All I have to say is thank God for Elmo and for a husband who talked to the staff about our ridiculous wait, all while dealing with a 4 yr old who hadn't eaten since the night before and a crazy pregnant wife whose blood sugars were in the 50s and vending machines that wouldn't take our dollar bills. Long story short, we met with the dr for about 5 minutes at 5pm. Ky may or may not need glasses due to farsightedness (as if those would stay on), and we won't know the ERG results for 2 weeks. Next time, I'm going to have him just send us a text, instead of us waiting 3 hrs to hear the news. Ky has been giving us a hell of a time lately about taking her meds too and not surprisingly, she has been having a few more seizures. I wonder if it is because of the random pills we are finding all over the house. The little stinker has been holding them and spitting them out. Grrr. At least she is expressing her own opinion!
Tomorrow, Ky has pre-school, PT and speech and then dance class at 5pm. My mom is picking her up from dance and then meeting Ava and I at the hospital, for their "Big Brother/Big Sister" class. With Ky spending so much time at the hospital and dr appts, poor Ava is a little confused about this baby. She knows we have to go to the hospital for the baby to come out but is constantly asking me, "You baby sick?" or my least favorite, "You baby died?" (Which I think is coming from the fact that with having so many friends who have had children die, we pray for the babies in heaven). It breaks my heart she knows no different, so I am hoping this class will help her realize good things can come out of going to the hospital. (And keep praying this baby is healthy!!) On a happy note for me, at least I'm not my mom! Ava asked her, "You have a baby in your tummy?" My mom said, "Umm, nooooooo." Ava says, "Oh, You just old?" Sorry mom but I love it! I am looking forward to a girls weekend this weekend, with my awesome 7940 crew. I am hoping should I go into labor this weekend at night, Neil will answer the phone! He is a horribly deep sleeper! I am also hoping the kids can get out a little this weekend. My mom and I went in on an adaptive bike for Ky and I am excited to have her try it out! Of course, Neil is pulling the "Pimp My Ride" card, so I am sure the bike will be hot pink by next weekend!
Ok, enough for now. Off to soak in the tub! Thanks for checking in!
************************************************************
I am busy getting ready for this year's "Step Forward to Cure TSC" walk/5K run. It will take place on Sat May 30th, at Lake Phalen, in St Paul. If you would like to join team "Kylie's Hope", we would love to have you! We are ordering new t-shirts as well this year, so if you would like to order one, please send me your name(s) and sizes. I believe the cost is going to be about $6-6.50 per shirt. You can sponsor Kylie by making a donation at http://www.firstgiving.com/mariagibbons , as well as sign up to walk or run the 5K. We hope to see you there!
************************************************************
Dear Friends,
As we near the start of the Journey For Jess the time has come to ask each of you for your help. Would you be willing to contact your friends, families and local businesses about the possibility of them donating to the Journey For Jess?
We are making up a sponsor packet for you to give to potential sponsors and need to get an estimate for how many we will need. The packets are somewhat expensive so we are asking that you use them to focus on businesses and individuals that you have a relationship with to keep costs down. We would like for you to start contacting people in March, so if you are willing to contact people for us please let us know how many sponsor packets you think you will need before February 13th. Once we have an estimate we will order the packets and get them to you by the beginning of March.
We are also making an informational flyer/postcard that is less expensive that you can give out that will direct people to the website or to contact us by email for further information. These will be available in early March as well.
Thank you all so much for helping us with our Journey For Jess.
The Beechers
************************************************************
2009 Step Forward to Cure TSC Walk / 5K run~ Sat May 30th at Lake Phalen, in St Paul.
2009 Kylie's Hope Charity Golf Tourney- Sat Aug 15th at Como Park Golf Course, in St Paul
Wednesday, March 11, 2009 2:32 PM CDT
Ok, spring is gone and the frigid winter is back. This weather is miserable. We are keeping really busy around here, as usual. Kylie had a really rough week last week- crying over the drop of a a hat, whining about everything and anything, and hitting anyone who came in a 2 foot radius of her. She was putting her head down non-stop and just acting miserable. The dr thought maybe it was her giant cell (brain tumor) giving her problems and was going to do a CT but luckily, after some antibiotics and nasal steroids, she is 100x better. It was just one nasty sinus infection with out all the sinus symptoms. She was back to her old self over the weekend, full of smiles and giggles. Unfortunately, on Friday when homecare came out, they were unable to draw labs from her port-a-cath. She has been really digging at it for weeks and the last few draws have given the home care nurses a lot of issues. So after a lot of scrambling, she is having a dye-study done at Children's tomorrow and then most likely a trip to the OR to have it surgically replaced. I got her in for a last minute pre-op physical today, which will also cover her ERG for next week as well. Hopefully tomorrow will go with out a hitch and maybe she can make it to dance class tomorrow night, depending on how she does with the anesthesia.
We had a busy weekend- we threw Laura's baby shower on Saturday and Ava joined Kylie's Sunday school class on Sunday. She was very upset she did not get to go to church w/ me, which I totally don't get, since she is awful in church! Neil, my mom and I then took the girls out to lunch and to the mall. the girls spent the evening with Uncle Ben and Laura, while Neil and I got some house stuff done. I work all weekend this week. KY is on spring break next week, which will be a blast trying to keep her entertained. Ha! The girls are taking a big brother/big sister class next week, which they should enjoy. They both think they have babies in their tummies- Ava has "Baby Zoey", Ky has "Baby Elmo" and they both think "Baby Jesus" is in mine. =)
Ky has her ERG next Wed, which we are hoping does not find any retinal damage. The vigabatrin has been a life saver! That's all for now. Thanks for checking in with us!
***********************************************************
I am busy getting ready for this year's "Step Forward to Cure TSC" walk/5K run. It will take place on Sat May 30th, at Lake Phalen, in St Paul. If you would like to join team "Kylie's Hope", we would love to have you! We are ordering new t-shirts as well this year, so if you would like to order one, please send me your name(s) and sizes. I believe the cost is going to be about $6-6.50 per shirt. You can sponsor Kylie by making a donation at http://www.firstgiving.com/mariagibbons , as well as sign up to walk or run the 5K. We hope to see you there!
************************************************************
Dear Friends,
As we near the start of the Journey For Jess the time has come to ask each of you for your help. Would you be willing to contact your friends, families and local businesses about the possibility of them donating to the Journey For Jess?
We are making up a sponsor packet for you to give to potential sponsors and need to get an estimate for how many we will need. The packets are somewhat expensive so we are asking that you use them to focus on businesses and individuals that you have a relationship with to keep costs down. We would like for you to start contacting people in March, so if you are willing to contact people for us please let us know how many sponsor packets you think you will need before February 13th. Once we have an estimate we will order the packets and get them to you by the beginning of March.
We are also making an informational flyer/postcard that is less expensive that you can give out that will direct people to the website or to contact us by email for further information. These will be available in early March as well.
Thank you all so much for helping us with our Journey For Jess.
The Beechers
************************************************************
2009 Step Forward to Cure TSC Walk / 5K run~ Sat May 30th at Lake Phalen, in St Paul.
2009 Kylie's Hope Charity Golf Tourney- Sat Aug 15th at Como Park Golf Course, in St Paul
Wednesday, March 4, 2009 2:14 PM CST
Finally!! It feels like spring is coming! We STILL have bugs floating around here- Ky has another sinus infection and nasty cough and both girls threw up this past weekend. I am hoping all the germs will be gone before baby #3 joins us in a few short weeks. I have been busy going to appointments 4x a week, making sure this baby stays healthy but it is looking like he or she wants to come early. Keep your fingers crossed we can hold out for at least 2 more weeks! The baby weighs approx 6lbs right now, which is great, but we are worried the lungs aren't ready for the world yet. I am supposed to take it easy, which is much better said than done!
Ky's ERG was canceled on Monday, as the machine was broke but is rescheduled for March 18th. We have a few hopefully minor concerns about her vision, which will hopefully be cleared up after the test. We have also been dealing w/ more temper tantrums and crabbiness lately but think it is related to her not feeling so great. She is a busy little thing, always getting into some type of trouble. The other day, I found her standing on top of her desk, balancing on top of her keyboard, drinking water in one hand and trying to get her music box down off the shelf, all while keeping an eye on Elmo (on tv). I almost had a heart attack! It will be good to get outside this spring, where she can do her dangerous stunts in the yard!
I am busy getting ready for this year's "Step Forward to Cure TSC" walk/5K run. It will take place on Sat May 30th, at Lake Phalen, in St Paul. If you would like to join team "Kylie's Hope", we would love to have you! We are ordering new t-shirts as well this year, so if you would like to order one, please send me your name(s) and sizes. I believe the cost is going to be about $6-6.50 per shirt. You can sponsor Kylie by making a donation at http://www.firstgiving.com/mariagibbons , as well as sign up to walk or run the 5K. We hope to see you there!
Not much else is going on right now. Thank you for continuing to keep us in your prayers!!
************************************************************
Dear Friends,
As we near the start of the Journey For Jess the time has come to ask each of you for your help. Would you be willing to contact your friends, families and local businesses about the possibility of them donating to the Journey For Jess?
We are making up a sponsor packet for you to give to potential sponsors and need to get an estimate for how many we will need. The packets are somewhat expensive so we are asking that you use them to focus on businesses and individuals that you have a relationship with to keep costs down. We would like for you to start contacting people in March, so if you are willing to contact people for us please let us know how many sponsor packets you think you will need before February 13th. Once we have an estimate we will order the packets and get them to you by the beginning of March.
We are also making an informational flyer/postcard that is less expensive that you can give out that will direct people to the website or to contact us by email for further information. These will be available in early March as well.
Thank you all so much for helping us with our Journey For Jess.
The Beechers
************************************************************
2009 Step Forward to Cure TSC Walk / 5K run~ Sat May 30th at Lake Phalen, in St Paul.
2009 Kylie's Hope Charity Golf Tourney- Sat Aug 15th at Como Park Golf Course, in St Paul
Monday, February 23, 2009 12:53 AM CST
Is spring ever going to get here?? The latest round of snow was a huge downer- can't wait until it warms up!! The kids finally were looking better health-wise and then I was hit w/ the crud. I am just getting over with it and now Ava looks like she is getting it again! It's never ending around here. Ky went nearly all last week without a seizure and then had a few over the weekend. Nothing major though. She had a speech eval done last week, with her last eval done 5 months ago. In 5 months time, she gained an entire year of language! We were so excited to hear that! Hopefully she will keep progressing in the right direction. We met with her social worker and nurse this morning and they couldn't believe all the nice changes she has made since summer. We have Ky's ERG at the U of MN on Monday, (the test that check for peripheral vision loss), so that should be a nice, long day. We haven't noticed any vision issues but her school mentioned today she keeps pushing on the side of her right eye- not sure if it is a vision thing or just a quirk. We'll just have to keep an eye on it. Ky starts dance again next week, which I know she loves. She has been practicing dancing the past few weeks, including standing on the couch and chairs, while she moves her arms to the beat. Not sure how many of you have seen "Mickey Mouse Clubhouse" but the girls watch it in the morning while Ky gets ready for school. There is a dance called "hotdog" and as soon as it comes on, Ava screams "Hotdog!" and they both get up and boogy. It's hilarious.
We are counting down the final weeks until the baby gets here. I am seeing the dr multiple times a week now and should start getting non-stress tests done this week or next, 2x a week. I can not wait until this is over with! It will be interesting to see how the girls will react, especially Ava, who insisted all day yesterday her name was "Princess". The girls are hanging out with Uncle Ben tonight, while I take a class. Not much else to report. Thanks for checking in with us!
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We have started planning the walk for this year, which will take place May 30th at Lake Phalen. There will also be a 5K run. We are ordering new tshirts this year, so let us know if you are interested in getting one or joining our team! Thanks for checking in!
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Dear Friends,
As we near the start of the Journey For Jess the time has come to ask each of you for your help. Would you be willing to contact your friends, families and local businesses about the possibility of them donating to the Journey For Jess?
We are making up a sponsor packet for you to give to potential sponsors and need to get an estimate for how many we will need. The packets are somewhat expensive so we are asking that you use them to focus on businesses and individuals that you have a relationship with to keep costs down. We would like for you to start contacting people in March, so if you are willing to contact people for us please let us know how many sponsor packets you think you will need before February 13th. Once we have an estimate we will order the packets and get them to you by the beginning of March.
We are also making an informational flyer/postcard that is less expensive that you can give out that will direct people to the website or to contact us by email for further information. These will be available in early March as well.
Thank you all so much for helping us with our Journey For Jess.
The Beechers
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2009 Step Forward to Cure TSC Walk / 5K run~ Sat May 30th at Lake Phalen, in St Paul.
2009 Kylie's Hope Charity Golf Tourney- Sat Aug 15th at Como Park Golf Course, in St Paul
Monday, February 16, 2009 7:12 AM CST
Good morning. It's my day off today and Ava decided we better get up at 6am. It's going to be a long day! I think we are finally recovering from all of the germs from last week. Both girls ended up with sinus and ear infections, as well as pink eye for the 3 of us. Ava also had croup, which despite a small lingering cough, seems better. We all just have colds now and I can't wait for spring! I was at the pharmacy 4x last week and I am sure they were sick of seeing me.
I worked most of the weekend but got off yesterday. I spent the day cleaning and organizing, while Neil took the girls to a birthday party- his first solo outing with both girls since we have had kids. Amazing, isn't it? I am going to try and make it a Sunday tradition for them, so I can get things done. We are headed off to another birthday party this morning and then plan on finishing up our cleaning. The baby is going to be here in no time, so I feel like I have a lot to accomplish before then. Ky is off school for a few days, so it is always fun trying to think of ways to keep her entertained- she is like a tornado.
Ky's seizures have been pretty good lately and it's times like these that if we weren't giving her 18 pills a day, makes me almost forget she is sick. She has another ERG in a few weeks, (the sedated eye exam to check for retinal damage from the vigabatrin). I dread the test, since we are at the U of MN all day- we get there at 830 am and won't get home until 430 or 5pm. It wasn't so bad earlier but I can not lift her now, so I am hoping Neil can go with. Ok, better run- the girls are starting to destroy all of my hard work from yesterday. Enjoy your day!
************************************************************
We have started planning the walk for this year, which will take place May 30th at Lake Phalen. There will also be a 5K run. We are ordering new tshirts this year, so let us know if you are interested in getting one or joining our team! Thanks for checking in!
************************************************************
Dear Friends,
As we near the start of the Journey For Jess the time has come to ask each of you for your help. Would you be willing to contact your friends, families and local businesses about the possibility of them donating to the Journey For Jess?
We are making up a sponsor packet for you to give to potential sponsors and need to get an estimate for how many we will need. The packets are somewhat expensive so we are asking that you use them to focus on businesses and individuals that you have a relationship with to keep costs down. We would like for you to start contacting people in March, so if you are willing to contact people for us please let us know how many sponsor packets you think you will need before February 13th. Once we have an estimate we will order the packets and get them to you by the beginning of March.
We are also making an informational flyer/postcard that is less expensive that you can give out that will direct people to the website or to contact us by email for further information. These will be available in early March as well.
Thank you all so much for helping us with our Journey For Jess.
The Beechers
************************************************************
2009 Step Forward to Cure TSC Walk / 5K run~ Sat May 30th at Lake Phalen, in St Paul.
2009 Kylie's Hope Charity Golf Tourney- Sat Aug 15th at Como Park Golf Course, in St Paul
Tuesday, February 10, 2009 9:26 PM CST
Good evening. I don't seem to have the time or energy to update regularly anymore, so thank you for continuing to check in! We can't seem to shake the sick bugs around here. I had Ava into the dr today and we left with a few prescriptions to cover pink eye, croup and a sinus infection. Kylie seems to be going downhill tonight but the ped said she will call something in for her if need be, so we don't have to expose her to everything else at the clinic. Ky just wants to snuggle and lay her head down, so I am thinking her head is full of junk, so to speak. We celebrated Ava's 3rd birthday on the 2nd. She had her 3 yr check-up, which went great and then we headed to MOA for the day. She spent the day going on rides w/ Uncle Andy, a trip to Underwater World with Andy and Andrea and dinner at The Rainforest Cafe with the whole family, She enjoyed being spoiled and when I asked her if she missed Ky, she simply replied, "Nope!" We had her b-day party with her friends this past Saturday, at a water park. Neil spent Sat in bed w/ the flu, so a huge thank you to Gee-ma, Sue and Andrea for helping me get the party together!
We had another ultrasound to look at the baby. No signs of TS still, which is wonderful, but the baby is big and there were signs I may have gestational diabetes. I have been monitoring my blood sugars for the past week, which unfortunately are too high. So today, I was formally diagnosed and I will see a endocrinologist thursday. The only bonus is that they want me to deliver early, so we have a tentative date to have the baby, which we will keep a surprise for now. =) We will also get a couple more peeks at the baby before delivery.
As for Miss Kylie, she continues to do very well, despite whatever is currently bugging her. Hopefully it is something simple that abx can clear up and nothing more. Her PCA mentioned she was acting a little funny at school last week, which seems to be continuing. Who knows.
We have started planning the walk for this year, which will take place May 30th at Lake Phalen. There will also be a 5K run. We are ordering new tshirts this year, so let us know if you are interested in getting one or joining our team! Thanks for checking in!
************************************************************
Dear Friends,
As we near the start of the Journey For Jess the time has come to ask each of you for your help. Would you be willing to contact your friends, families and local businesses about the possibility of them donating to the Journey For Jess?
We are making up a sponsor packet for you to give to potential sponsors and need to get an estimate for how many we will need. The packets are somewhat expensive so we are asking that you use them to focus on businesses and individuals that you have a relationship with to keep costs down. We would like for you to start contacting people in March, so if you are willing to contact people for us please let us know how many sponsor packets you think you will need before February 13th. Once we have an estimate we will order the packets and get them to you by the beginning of March.
We are also making an informational flyer/postcard that is less expensive that you can give out that will direct people to the website or to contact us by email for further information. These will be available in early March as well.
Thank you all so much for helping us with our Journey For Jess.
The Beechers
************************************************************
2009 Step Forward to Cure TSC Walk / 5K run~ Sat May 30th at Lake Phalen, in St Paul.
2009 Kylie's Hope Charity Golf Tourney- Sat Aug 15th at Como Park Golf Course, in St Paul
Friday, January 30, 2009 7:13 AM CST
Good morning. Is winter ever going to end??? We are going stir crazy being stuck in the house so much! Currently, the girls are both healthy, although Kylie was exposed to strep yesterday and a few of the kids regular playmates just came down with the stomach flu, so I am crossing all fingers and toes it will pass our house this round! Ava's 3rd birthday is on Monday and would hate for her to be sick for it. After her 3 yr check-up, we are planning on heading to the Mall of America for some rides, letting her pick out a present and meeting my family at the Rainforest Cafe for dinner. Next weekend will be her party with her little friends, at the local community center for a night of swimming. So, cross your fingers for good health around here!
The girls started swimming lessons last weekend and really loved it. I, however, was less than thrilled to get in a swimsuit, and had a hard time lifting Ava during some of the exercises, so my brother offered to take her this weekend, (thank you Andy!!) Not much planned for the weekend, as both Neil and I work. Next week is full of therapy, school and appointments. We have our last level 2 ultrasound, to check out the new baby. So far everything looks great but since TS complications tend to show up in the 3rd trimester, the dr wanted to check one more time. We are finally in the home stretch- only about 10 weeks left! And if this one follows the girls trend, possibly only 7-8 more weeks before our lives get tossed upside down. =)
I met with Kylie's OT this week and we went over her recent annual assessment. She was so excited to show me how much progress Kylie has made since her last assessment- she ranked her at just about age 3 1/2 yrs for her overall OT skills, only about a year behind. This huge gain started to really take off at the end of summer, so we hope the trend continues. Her biggest delay continues to be her expressive language, so we are hoping that will continue to progress as well. She is currently doing pretty good seizure wise. Only an occasional one here and there and even those ones are hardly noticeable. She will be starting dance again in March, which she loves. Her and "Buddy Mary" will finally get to see each other again!
A couple of exciting pieces of news around here~
First, Kylie's story was chosen to be a part of the TS Alliance's national marketing campaign. A few years back, I was asked to write her story for a book the Alliance was putting together, on some of the TS families. This is the same story that will be used in their campaign, along with a picture of both Kylie and I, (that is, if I can find one!) These stories will be at all of the TS Alliance's event throughout the country, as well as in publications and magazines. It is such an honor to share our beautiful girl with the country. Secondly, Neil and I attended the first Twin Cities Food and Wine Event last night, where a lot of money was raised for research. Unbeknown to us, we were both humbled and honored when we were selected as the TS Alliance's Upper Midwest's Volunteers of the Year. Our good friend, Jim Hable, read an amazing speech about us and we were each given an award. It was such an honor, yet I know so many people would jump right in and do the same thing as we do, if it was their child who was sick. We just hope that our efforts will help to find a cure within Kylie's lifetime. She, as well as all of these kids, definitely deserve it.
The girls had a slumber party at Gee-ma and Papa's last night, so I need to send Neil to go get them. Hope everyone stays warm today! Also, please read below on the latest about "Journey for Jess".
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Dear Friends,
As we near the start of the Journey For Jess the time has come to ask each of you for your help. Would you be willing to contact your friends, families and local businesses about the possibility of them donating to the Journey For Jess?
We are making up a sponsor packet for you to give to potential sponsors and need to get an estimate for how many we will need. The packets are somewhat expensive so we are asking that you use them to focus on businesses and individuals that you have a relationship with to keep costs down. We would like for you to start contacting people in March, so if you are willing to contact people for us please let us know how many sponsor packets you think you will need before February 13th. Once we have an estimate we will order the packets and get them to you by the beginning of March.
We are also making an informational flyer/postcard that is less expensive that you can give out that will direct people to the website or to contact us by email for further information. These will be available in early March as well.
Thank you all so much for helping us with our Journey For Jess.
The Beechers
************************************************************
2009 Step Forward to Cure TSC Walk / 5K run~ Sat May 30th at Lake Phalen, in St Paul.
2009 Kylie's Hope Charity Golf Tourney- Sat Aug 15th at Como Park Golf Course, in St Paul
Saturday, January 24, 2009 11:53 PM CST
Good evening. Things are finally quiet around here, so I thought I would update quickly. We have had sick kiddos for the past week and I can't wait for spring! Kylie was pretty much in bed from Thursday-Tuesday, watching an obscene amount of Elmo, so much that the first thing she has been saying when she wakes up is, "Mommy! I wanna washhhhhh Elmo! I wanna washhhhh Ernie!" etc, etc. We some sort of therapy for her, similar to AA, like "Sesame Street Anonymous ". She was running a fever, had a horrendous cough and icky nose. On Monday, after screaming for 2 hours straight, I brought her into the ped but she said she only had fluid in her ears. She still is coughing a bit and has an icky nose but is in a much better mood. She did make it to therapy this week and to most of school. Ava started coughing on Wednesday and by last night, was rolling around the living room floor, screaming that her ear hurt, (it's a fabulous thing when your kid can actually tell you what is wrong!) I brought her into urgent care last night and sure enough, has a whopping ear infection, as well as a suggestion to follow-up w/ ENT, since her tube is not looking very good. She was feeling 100% better today, so we did go to our first day of swimming lessons. Both girls loved it, although I was less than thrilled to get in a swimsuit, 7 months pregnant. Uncle Andy is filling in for me next week, which I couldn't be more thrilled about. =)
We have been busy cleaning the house today and I spent most of the past week working on all of Kylie's paperwork for insurance, therapies and PCA services- not a good time. Sometimes I think the hardest part of having a special needs kid is not the day to day care taking of them but having to deal w/ the paper trail that follows them, the coordinating of appointments and the hundreds of phone calls and call backs I seem to make each week. My bright spot of the week was getting the report from Dr Frost's office and being able to see on paper how well Ky is doing. I am praying all of this therapy and classes we subject her to will pay off in the long run. Our huge issue is her annunciations, which with time, will hopefully get better. I was surprised today when she showed me that she knows not only the entire alphabet but the lower case version of it as well. We haven't pushed potty training with her yet but when I am on maternity leave, we are going to try and get the ball rolling. I know it is going to take a long time but hopefully our motto of "Slow and steady wins the race" will continue to show through. =) I signed Ava up for pre-school for the fall, mainly to get away from me during the day. =) She seemed excited to be with the other kids and I am praying not to get daily phone calls for her antics.
We have a TS event on Thursday this week, a few appointments and aside from that, probably staying inside and wishing spring would get here sooner than later. Have a good week and stay warm!!
2009 Step Forward to Cure TSC Walk / 5K run~ Sat May 30th at Lake Phalen, in St Paul.
2009 Kylie's Hope Charity Golf Tourney- Sat Aug 15th at Como Park Golf Course, in St Paul.
Friday, January 16, 2009 9:49 PM CST
Good evening. Ky and I are snuggled in for the night. I am on-call for work and Ky has been sick, so Neil and Ava went out to watch our old rival high schools battle it out on the hockey rink. We are trying to get Ava to start skating but she would rather do dance (which is fine by me!) Kylie has had a horrendous cough for the past few days, as well as an icky nose. She started running a temp yesterday and has been 101 for most of the day. Although her extra rosy cheeks are pretty cute, I wish she felt better. We did get to see Dr Frost today and he was very pleased w/ her progress. We are not going to make any meds changes and actually got to schedule a 6 month appointment, which is the first for us in 4 years! Usually, we see him every 3 months. She will have an MRI in August, to check the growth of the tumor in her ventricle and we will follow up with him the week after. Her med levels all came back lower than they usually are- not sure why but she is tolerating the lower levels nicely. She has an ERG set for March 2nd, which is the sedated exam that checks for peripheral vision loss from the vigabatrin. So far, so good. Since vigabatrin has been recommended to be approved by the FDA, Dr Frost can now write a prescription for it. However, he said we may soon have trouble getting it from Canada, as they are cracking down on American prescriptions. Mexico is now longer carrying it, so we are going to have limited options of how to get it. We can order it from a NY pharmacy but it sounds like we will be paying quite a bit more than we are now. Hopefully, the FDA will get everything finalized soon but from the sounds of it, it is going to be a long wait. One more obstacle of this lovely disease.
Aside from being sick, Kylie continues to do well and we are extremely pleased w/ her progress. Her PT suggested pool therapy, so we signed the girls up for swimming lessons in a heated therapy pool. The drawback is that Neil and I have to get in the water w/ them- yikes! But if you ask Ava, when I told her she was going to take swimming lessons, she said "No, that ok. I stand on the sidewalk and watch." Future Olympian? I think not. We did get to see "Sesame Street Live" on Wed, which Ava loved and Kylie adored. She keeps telling anyone who will listen, "Go see Elmo! Go see Ernie! Go see Bert!" and so on and so on.
Not much planned for the weekend. I work and the girls will probably just hang out, which will hopefully help Ky get better soon. Neil is actually picking up a triple stroller in the morning, for our growing brood. So if you see a crazy lady on roller blades this summer, pushing a triple stroller w/ 3 kids, as well as a dog or 2 attached, that will be me. Maybe I'll get knee pads for Mother's Day! Hope you all stay warm this weekend! We are looking forward to getting out of the -20 degree weather!!
2009 Step Forward to Cure TSC Walk / 5K run~ Sat May 30th at Lake Phalen, in St Paul.
2009 Kylie's Hope Charity Golf Tourney- Sat Aug 15th at Como Park Golf Course, in St Paul.
Friday, January 9, 2009 5:43 PM CST
Good evening. We are hoping all the germs will be leaving our house soon. I finally caught the stomach flu last night and it has been awful! Ky still has an icky nose but everyone else is doing good. We are planning a low key weekend, hoping to recover and recoup by Monday.
We received some wonderful news yesterday!! The medication that Kylie takes, Vigabatrin, went up against the FDA yesterday and it was recommended for approval! It will still take about 8 months to get it completely approved but it is huge news in the TS community! This is the medication we have to order and have shipped from Canada, as well as pay for out of pocket, which gets quite spendy. The thought of being able to pick it up from our local pharmacy and have insurance pay for it is very exciting. Here is a little excerpt from on Vigabatrin (Sabril) from the TS Alliance. The medication is used to treat infantile spasms, (which Kylie never had), and complex partial seizures, (which Kylie does have).
"IS is one of many potential consequences that may arise from tuberous sclerosis
complex (TSC), a rare genetic disorder. It is a rare and catastrophic form of
epilepsy that almost always starts before one year of age. The spasms typically
last for one to five seconds and occur in clusters of up to 100 at a time; they
can cause severe developmental delay and as many as 20 percent of infants
affected die before age five. Currently, there are no approved therapies for IS.
Sabril has been proven effective in controlling infantile spasms in many cases,
especially when the underlying cause is TSC.
Complex Partial Seizures that occur in more than one-third of all epilepsies are
seizures that originate from a single region of the brain and cause impaired
consciousness. Despite the availability of more than 20 AEDs, approximately 30
to 36 percent of adults with CPS suffer from seizures that are unresponsive, or
refractory, to treatment. People with uncontrolled seizures have a nearly 40
times higher risk of mortality than those whose seizures are adequately
controlled."
A huge thank you to our friend, Jim Hable, who made the trip to Washington DC and spoke on all of our behalf.
Not much else new is going on here. Ky had her labs drawn today, continues to have seizures here and there, but is doing well developmentally. They have been working on, "I want........." in therapy, which she is actually starting to use at home, "I wanna watch Elmo!", instead of "Watch Elmo please!" Ava continues to keep us on our toes with her extremely vivid imagination. Some days we wonder where she came from. =) Last week she was pretending to have seizures, complete with shaking and the noise effect, then giggling at herself. We tried explaining that it makes us sad when Kylie has a seizure and she responds, "Kylie makes you sad, right?" I guess that went right over her head!
We are thinking of many of our friends, who are experiencing birthdays and anniversaries of their sweet kiddos, who have gone to Heaven before them. We love you guys! Hope everyone has a peaceful weekend.
Saturday, January 3, 2009 8:54 AM CST
Happy New Year!!! Our has not been off to the greatest start yet. The seizure monster has found Ky over the past few days but we think she may have a sinus infection. She started throwing up last night, right as we were walking out the door to go out to dinner. Ava and I headed out to Target instead, for stock in jello, pedialyte and 7-UP. We gave Ky some zofran last night, which really seemed to help. We will have to see what today brings. The girls spent a low key New Years w/ Neil, while I worked. They had a sleepover on Thursday w/ Gee-ma, while I worked and Neil went ice fishing. We got up at 5am to get the permit for this year's TS walk, which will be Saturday, May 30th, at Lake Phalen, in St Paul.
Kylie got a new computer a few days ago, courtesy of cousins Lisa and Leon. She has been so into it! It really has seemed to help w/ her attention span, which actually seems better lately. I had a chance to take her to therapy a couple of times in the past few weeks and it was nice to hear all of the progress she is making. Her OT can't believe how far she has come in the past 6 months. She is starting to draw shapes even. It will be good to her back to school this week, as her and Ava have been having many fights! I am taking a "special needs potty training" class this week, so hopefully we can really get Ky going. Ava had a few days "relapse" in the "being potty trained" department. She told me she didn't want to wear underwear anymore and wanted to wear diapers. She seemed to cure herself of the problem, after I took all her new dolls and make-up away, telling her the dolls "need a mommy to take care of them, so if you are a baby, you can't take care of them" and that make-up was for big girls, not babies. Hopefully we won't have that problem again!
2008 was a great year for us and we are hoping 2009 will be even a better one. We were very sad to say good-bye to a few friends and family members this past year and pray this new year brings nothing but good health and happiness to those closest to us. Here are some of our blessings from the past year~
January~ Took the girls to see "Sesame Street Live", which they loved. Kylie started vigabatrin, which chamged our lives.
February~ Ava turned 2 on the 2nd and we celebrated with family and friends at "The Eagles Nest". Ava also moved to sleeping in a "big girl bed".
March~ Took girls to their first MN Wild game. Happy Easter!
April~ Kylie's first ERG is stable. Kylie started dance.
May~ Maria chaired the "Step-Forward to Cure Tuberous Sclerosis walk/5K run", which raised over $60,000 for TS research. "Kylie's Hope" raised the most money as a team, after all the final counts were in. Kylie started using a straw!
June~ Kicked off "parade season" at the Grand Ol Days parade, our first of many that summer. Drove to Fargo and back, w/ both girls, in one day for the "JFJ" kickoff. Ava sent her nukie to "the babies in the sky". Neil built a huge play structure for the kids, in the back yard.
July~ Neil turned 31 on the 8th and Maria turned 29 on the 15th. Kylie adored her first ice cream cone. Took the kids to their first MN Twins game. Maria's brother Andy came home safely from Iraq. We went with Maria's family to the cabin and spent some time w/ her dad's family on the lake.
August~ Went on our first camping trip as a family, along w/ some of our best friends. Found our we were expecting baby #3 and held the 4th Annual "Kylie's Hope" charity golf tourney, which raised $22,000 for TS research. Attending the MN Stroll for Epilepsy, where Kylie did NOT have a huge seizure in front of hundreds of people this year.
September~ Kylie turned 4 on the 20th and had a "Princess Party". Maria and Neil celebrated their 5 yr wedding anniversary on the 20 and celebrated a few days later by heading down to FL. Kylie also started pre-k at St. Bernards, accompanied by her beloved "Buddy Lynn".
October~ Kylie has her second ERG, which is stable. Happy Halloween! The girls were a angel and a devil. They loved going to Como's "Zoo Boo". Kylie injured her ankle this week and is still having a problem with it. She will be casted soon for ankle supports to help correct the problem.
November~ Neil spent 3 weeks hunting at the cabin and read his first book in the 12 years Maria has known him.
December~ Took the girls to the Macy's Christmas display, went to "Disney on Ice" and celebrated the holidays with our families.
Did you notice not one single day was spent in the hospital? 2008 was great! Have a wonderful weekend!
Sunday, December 28, 2008 11:13 AM CST
Merry Christmas everyone! It's hard to believe it is already done and over! We had a great Christmas, although the girls got WAY too much stuff. They are really enjoying the new kitchen set Santa brought! Kylie got a ton of art stuff, so she has been busy drawing pictures of Elmo, Dora and Sponge Bob. Ava has been having a good time w/ her new make-up kit, although her creations are a little scary! They also have both been taking good care of their new baby dolls. We went to church on Christmas eve and had my family over after for dinner and presents. We spent a lazy Christmas day at home, watching the kids play with all of their new toys, feeling so blessed we could all be home together this year, healthy and happy. We went over to my parents on Christmas night, for dinner and more presents. We wrapped up the season at with my mom's family yesterday and have been spending most of the weekend cleaning, organizing and painting. Neil has a good chunk of time off from work, so he is pretty much repainting nearly ever room in the house! The baby's room is nearly ready to go as well!
Kylie continues to amaze us with her spirit and joy. Although she has had a few days here and there w/ an increase of seizures, over all, we have not been seeing many at all. Her communicating her needs over the last month has really seemed to improve, as have her manners. Every request is followed by a "please" and a huge grin. It is very hard to say no to her sometimes! She has shown some jealousy lately w/ Ava, so it will be interesting to see what happens when the baby gets here. If I am fixing Ava's hair, she starts crying, pulling at her hair and saying, "Brush please!" If we are praising Ava for something, Ky turns on the fake waterworks and tries to show us what she is doing that needs praise. It is pretty cute. We see Dr Frost in a few weeks and it will be nice for him to see her doing so well. It will be a long week off for Ky (and us!), as she has another week off of school and most therapies. Since she hasn't been as busy, she has been up at 6am, every day we have been off (grr), when normally, we have to wake her up. Neil has been awesome enough to get up with her every morning, so I guess I can't complain too much.
I work pretty much every day except Friday this week, so they girls will get some quality time with Neil. Thanks for checking in with us and enjoy the new year!
Friday, December 19, 2008 8:52 AM CST
** I almost forgot~ check out www.digital-ink-studio.com and click on the section for Jes's blog. The girls re featured and you can see some of their new pics!
Happy Friday! I work all weekend, so I guess it's not that happy, but it will be nice to sleep in tomorrow! I just found out Ava was exposed to the stomach flu, so I am crossing ALL fingers and toes we don't get it!! The kids are SO looking forward to Christmas and Neil and I both have 5 days off, so we are hoping to spend them having fun!
We have been staying busy this past week, finishing up Christmas shopping, making presents for Ky's teachers and attempting to get some baking done, (which still hasn't happened!) Ky had her Sunday school Christmas program last weekend. She sat up on stage yelling, "Mommy! Mommy!" and Ava sat in the audience yelling, "I want my Kylie Jo!" Needless to stay, it didn't go very well! Ky had her Christmas program at St Bernards on Wednesday, which went much better. She sat w/ her class the entire time, smiling and giggling at the other kids and attempted to do the arm motions for the songs. Ava was well behaved too and when Santa came to visit after, Ava didn't even get upset that he did not have a present for her- she just went up and got Ky's gift for Ky. We also took the girls to Sesame Street Live last weekend, which they really enjoyed. Although, Kylie kept asking throughout the show, "Where's Elmo? Where's Ernie? Where's Bert?" We are going w/ friends to see Elmo next month, so hopefully will really enjoy that show!
Things have been calm on the seizure front. A few here and there but nothing major. We see Dr Frost next month and we are going to try and see if he can help us figure out her attention span, whether or not a medication would help, if it is her development or if it could be from a med she is already on. If all fails, I'll drop Ky off on his doorstep for the weekend so he can see what I really mean. =)
We are going to try and rearrange bedrooms over the next week and hopefully get the girls used to sharing a room before the baby comes. If only our house was 2000 square feet bigger! We will be getting rid of a lot of junk too, so hopefully that will help. I want to get the majority of this stuff done before I get too big to move. Plus, I am already having some contractions if I do too much, so I can imagine it will only get worse over the next few months.
I am going to try and put together a picture video of the past year, so check back next week! Also, if anyone happens to catch the show "The Doctors" today, they are featuring a family w/ TS. For those in MN, check out channel 11 at 3pm (I think!) Have a great weekend!!!
Wednesday, December 10, 2008 2:31 PM CST
Hi all. I can't believe how fast this month is flying by! The girls are excited for Christmas and Ky asks multiple times a day to "go see Santa!" Neil and I are looking forward to a few days off over Christmas, which we are hoping to start getting the house in gear for our latest addition. We need to get some painting done and figure out where everyone's bedrooms will be. Although, by 6 am, we tend to have 2 sleeping little girls in our bed, so it probably doesn't matter where they start out!
Aside from Ky driving us crazy by getting into EVERYTHING and the girls both dreaming up wild and naughty things to do, (and no, the ploy about Santa watching them does NOT work!), Kylie continues to do well. She is going to get fitted for braces on both ankles, sometime in the near future. When she hurt her ankle around Halloween, it never fully healed and she is still having difficulty w/ it. We are hoping that with the braces and by doing some strengthening activities, she will get better soon. Ky has decided to take a strike against taking meds most mornings, as sometimes 1 pill takes 45 minutes to go down (and she takes 18 a day!), we have been late to school most mornings, despite getting up early. She is definitely not the easygoing little girl she once was, although I do like to see her forming her own opinions on things and try to challenge us. I think I would have bit one of us a long time ago, every time a spoonful of crap was shoved down my throat!
We have an extremely busy weekend ahead of us. I work friday, Saturday we are taking the girls to "Disney on Ice" (we try to go to some sort of kid production every year around Christmas- we are also going to "Seseme Street Live" in Jan as well!), I have an ornament exchange w/ my grade school girlfriends on Sat, Ky has her Sunday School Christmas program on Sun and I am taking both girls to my high school ornament exchange on Sun. We have to fit in making bars for Ky's program, as well as numerous other activities! We (or I, I should say!, have been busy working on our Christmas cards, Christmas shopping, wrapping and trying to catch up on the laundry.
Ava has been walking around the house, telling everyone, I have a baby in my tummy and it is kicking me". We have a fetal heart tone monitor that she likes to put on her tummy and listen w/ headphones- it is too cute. I can imagine her disappointment when my baby comes out and hers doesn't! Hopefully Santa can help w/ that one, by bringing her a new baby.
Have a great week!
Tuesday, December 2, 2008 2:49 PM CST
Hi everyone. We had a great Thanksgiving and weekend. The girls were both healthy and in great moods. Unfortunately, they both gave up their naps in the past week and I am ready to pull out my hair! We are trying for earlier bedtimes but have not quite got there yet.
Kylie continues to have seizures off and on but none of them seem to be affecting her very much. They seem to be pretty quick and painless. She did start limping again in the past week, so I am not sure what is going on with her foot. She was ecstatic to get back to school yesterday, after a week off. You can tell she is totally board being home and does much better when we stick to her regular routine. We drove down to see my great uncle at the Mayo Clinic on Sunday and had a chance to stop and see Santa again. This time, after a little nudging (and a little help from Santa), Ky talked to him and even climbed up in his chair. We finally have a Santa pick of both kids together, although Ava is not smiling.
We cut our tree down on Saturday and underestimated it's size. It seems to fill half of our living room and after getting it fully decorated, we watched it crash to the floor, breaking most of the ornaments in the process. Ava is still talking about it.
With the Christmas season upon us, I decided to nominate my good friend, Shannon, for the KDWB "Christmas Wishes", which would help fund her project for Children's Hospital. Shockingly, I got a call yesterday, saying they had chosen my letter and I was on air this morning! (check out the link on the front page of www.kdwb.com) I am not sure how long it will be up for but we are "wish #13 if they let you do a search. For more information on Shannon's project, go to their website at www.caringbridge.org/mn/drewolson The Olson's are an amazing family that continue to give, despite their incredible loss. KARE 11 also did a story on friday while we were making gift bags~
http://www.kare11.com/news/news_article.aspx?storyid=530659&catid=14
Not much else is new here. We are extremely blessed that things continue to remain stable for our sweet girl. Despite her many challenges, she wakes up every day with a smile, asking for her little sister, and we are blessed with numerous giggles (as well as a million questions!) each day. Ava and I woke up early the other morning and set up my Dept 56 Christmas houses. Kylie saw them when she was walking down the steps and was a little leary from all of the lights. Ava calls out to her, "It's ok Ky. Don't be scared. I your very best friend." She took Ky's hand, led her over to the display and gave her a big kiss. I learn every day what compassion is all about, all from a 2 yr old. Thanks for checking in and have a wonderful day!
Sunday, November 23, 2008 9:42 PM CST
Check out the link to see what the Olson's are up to~
http://www.kare11.com/news/news_article.aspx?storyid=530659&catid=14
Wed Nov 26th 7:30PM
Just a quick update~ We had our ultrasound today and the new baby looks perfect. He/she is measuring exactly on date and they saw no signs of TS. We will have another ultrasound when I am 30 weeks along, to make sure no signs of TS pop up. The tech did say the baby seems to be a wild one, so I think we are going to have our hands full in a few months! Have a blessed Thanksgiving!
Good evening. Things have been pretty quiet around here, which is always a good thing. Kylie's seizures have slowed back down again and medically, things have been pretty stable. She is doing well in school, although her attention span is always a work in progress. She is currently working on reciting her alphabet (so far, she can recite A-F) and is working on counting. I have to say she is in a really good place right now. Her hair is now half way down her back and I am so tempted to cut it, to make our mornings easier, but it is so beautiful! She is off school and therapy this week, so we will have to find things to keep her busy! She is driving me nuts w/ all of her coloring on the walls (no idea where she keeps finding all the crayons) but she truly enjoys coloring. Ava is doing good as well. She is offically fully potty trained and is even staying dry during naps and at night. Out of the blue last night, she decided to bite Kylie in the hand. I asked her what she did and she said, "I bite my sister. Now I go live in the sky." We have been telling her she can't be rough w/ our shih tzu, Sadie, because if she bites, she will have to go live in the sky. I guess we need to come up with some new terminology. Ava continues to keep us on our toes at an hourly rate and I can not believe some of the things that come out of her mouth.
Neil is finally done hunting and to Ava's relief, he did not "hurt any baby deer". Last week, my parents, Neil and I took the girls to the Macy's Christmas display in Mpls. They loved it, although when it came time to see Santa, our picture only includes Ava and Santa. However, my mom and I took the kids to a HOPE Kids event yesterday, where we had cookies w/ Santa, and we got Ky to sit w/ him, as long as she was sitting on my lap. Hopefully they turned out ok.
On Friday morning, my 27 yr old cousin, Craig, died unexpectedly. He was such a sweet and great guy and our family will miss him deeply. Please keep his parents, brothers and rest of the family in your thoughts and prayers. I am glad I got a chance to see him one last time, on thursday night. A huge thanks to Grandma Sue for watching the girls, so I could go. His services are this week.
We are heading over to my parents house for Thanksgiving, which we spend w/ my mom's side of the family. The guys are gearing up for their annual football game, which get a little bit more ridiculous each year to watch, as they all get another year older. Let's just say the 3 hr game was condensed to a 1 hr game last year. =) On Friday, I head w/ my aunt and cousin for our annual Black Friday shopping day. It is always a great time! We are hoping to get our tree this weekend and will decorate for Christmas. The girls are super excited about Christmas this year, which is really fun to see.
I almost forgot~ We have our big level 2 ultrasound on Wednesday, to check the new baby for any problems. Even though Neil and I tested negative for TS, they will be looking closely at the brain and heart for any signs of tumors or other problems. I am getting a little bit more nervous each day and we are praying really hard for good results. So, if you could keep us in your thoughts and prayers, we would really appreciate it! We are not finding out what we are having though, so it will be a surprise!
We want to wish everyone that checks in on us and prays for us, a wonderful and happy Thanksgiving. We have so much to be thankful for this year, despite the hard times many are going through~ we both have stable jobs, our family is currently healthy (knock on wood!), Kylie is making wonderful progress, and we are surrounded by great family and friends. Have a great week!
Sunday, November 16, 2008 8:12 AM CST
Good morning. Ky and I have been up bright and early the past few days, while Ava lounges in bed. It's been nice to spend a few uninterrupted hours w/ my sweet girl, since I hardly get any one on one time w/ Ky during the week. We have continued to stay busy around here. Kylie completely and totally loves going to school and therapy everyday. During the weekend, all she talks about is "Go see buddy Lynn?" (her PCA at St Bernards) or "Go see buddy Laurie?" (the teaching aide at her public school) Her limp is just about gone, from her unknown ankle injury. We are still working on counting and reciting the alphabet. Her latest obsession is coloring and she will spend hours doing so. Maybe she is going to get the artistic gene from her dad. =)
I find it ironic the I shovel 9 pills down her throat her every morning, for a daily total of 18 pills every day, yet we continue to see a flurry of seizure activity. She was doing great for the past few months. However, after a full moon on thursday, we are seeing quite a few seizures every morning and a handful more scattered throughout the day. I am hoping this pattern ends soon, especially since I think they scare her a little. She has been running up to us and grabbing our legs right before one starts. We always try to take one day at a time but at times I look ahead and can not imagine a lifetime of this for her. Not much else to say except it just plain sucks.
Neil has been gone hunting again but I have been off this weekend, so things are not quite as stressful. On friday night, the girls and I hung out all night. Saturday morning, we met my high school girlfriends for breakfast- it was great to catch up w/ you ladies! Ky showed off her killer eating skills. =) I spent the good part of yesterday afternoon organizing the playroom and getting rid of old toys, with a huge hand from Grandma Sue. Last night, my mom, sister, Laura and Alex came over for pizza and game night, which was a good time. This morning, we have a baby shower to go to. I hear Ava, so I better wrap this up. Our good news of the week~ Ava has been in underwear all week! She is growing up so fast! I brought her to Target to buy a "potty prize" and after going up and down the aisles for 30 minutes, she finally picked out a package of 7 mini Disney Princesses, because "I share these w/ my Kylie Jo". She is so sweet and I know will always take care of her big sister. Have a good week and thanks for checking in!
Thursday, November 6, 2008 12:34 AM CST
I guess we are due for an update. The girls really had a good time on Halloween, although Ky had to ride in the stroller, since her ankle was still sore. Neil took the kids out trick or treating, while I handed out candy. We hardly had anyone come, so we headed over to my parents house for the big display they put on. It's pretty amazing and is definitely worth checking out next year if you have not seen it yet! Ava had a good time handing out candy w/ Gee-ma, while Ky snuggled w/ Poppa. On Sat, my mom took Ky back to the dr, since she still wasn't walking but she checked out ok. We had lunch w/ my mom and Grandma Sue, then went home for naps. We went to a Halloween party Saturday night and the girls had a blast. We haven't been doing a whole lot lately. Ky finally started walking on Sunday but still is pretty slow and has a limp. I ordered a therapy belt for her, which is a 3 lb belt of weights that she wears around her waist. It is supposed to help w/ her tone and her attention span, so I thought we would give it a shot. Her teachers all said she is paying attention better in school, so hopefully it will work! She has been having some seizures, here and there but nothing too major at this point. She is super into puzzles and coloring lately, so it is nice to have some activities to keep her busy, that do not include destroying the house w/ her sister!
Kylie's speech continues to improve, although her conversational skills have a long way to go. Ava told my mom yesterday, "My Kylie can't talk." It about broke my heart! It is sad to see that even a 2 year old is picking up that maybe her sister is a little different. But she continues to love Ky like nothing I have ever seen before. They are truly the best of friends.
I become a hunting widow tomorrow, as the MN hunting opener is Saturday, so the girls and I will pretty much be flying solo for most of the rest of the month. I work 2 of the weekends Neil is gone, so luckily my mom, Sue, Kari, Andrea and Laura are stepping in to help out. I think when baby #3 comes I'll have to start outsourcing the kids! Well, I'm going to go rest while things are quiet. Have a great weekend!
Thursday, October 30, 2008 12:36 AM CDT
UPDATE 11/1/08:
Please pray for a special TS family tonight. Both of their younger boys have TS and the the older one, Fletcher, had a 5 1/2 hr status seizure today. He was put into a coma to stop it and is currently on a vent. The family is military and just got transferred, very far away from family and friends. www.caringbridge.com/visit/gistboys
Trick or Treat! We are excited for Halloween tomorrow and are looking forward to carving pumpkins tonight, (well, Neil will carve them all, while the girls throw the guts on the floor and I pretend to be helping. =) I was so excited for trick or treating this year, since this would truly be the first year Ky could really walk up to all the houses on her own. But when do things go according to plan around here? Ky stepped off a stool wrong at school on tuesday and has not been able to bear any weight on her right side at all. She had xrays done on her foot and ankle, which were negative but if she is not walking by tomorrow, they want to xray her hip. So I guess we will be dusting off the old wagon for tomorrow night. I bit the bullet and made the girls costumes by hand this year and they actually turned out pretty cute. We have an Angel and a Devil~ can you guess who is who? =) I am hoping to post a picture of them tomorrow.
The seizures have seemed to slow down again and Ky is doing well, aside from not walking (although her therapists would love all the tall kneeling/walking she is doing! She continues to be a little chatterbox and has even started counting! We are not past 6 yet but we are working on it! She amazes us every day. Ava continues to push every single button I have and then some. She puts the term "terrible twos" to shame.
We plan on hanging out at home tomorrow night and then on sat, we are going to a Halloween party/bonfire. The kids should have a good time. We have Sunday school on sun and otherwise just plan on some yard work and organizing things around the house. Next week, I become a hunting window for most of the month. I told Neil to enjoy it, since next year things might be a little different!
Hope everyone has a safe and Happy Halloween!
Sunday, October 26, 2008 11:52 AM CDT
Where to start? We lost our charger for our camera, so it is completely dead. We pulled out the old camera but unfortunately, 75% of the pictures come out blurry. I'll post better pics when we get a new charger.
Kylie is in a much better place than she was last week. After starting on an antibiotic, her seizures slowed way down. We only saw one yesterday and so far, none yet today. Unfortunately, the antibiotic has caused diarrhea and I took the brunt of it this morning. Sadly, my morning sickness kicked into high gear from the smell and let's just say it was not pretty around here! To any neighbors that saw weird activity this morning, that was me who dragged my poor girl out on the front lawn to change her diaper, in the 30 degree MN weather. The fresh air helped dispense the smell!
Ava spiked a temp last night, so I need to go get her RX filled soon. She most likely has strep as well. We did end up getting to go to the "Zoo Boo" at Como Zoo last night and the girls loved it. Ava was a little shy but Ky was a completely different kid than last year. She went up to every costumed character and gave them a "high five", w/ her index finger. She also stopped at every candy station and gave a "Tit-ta-teet"! and then a big "tank-you!" It was fun to see her get so into it! She also walked the entire way, which was a nice change too. I also attended an all day seminar yesterday about IEPs in the education system. It was a long day but very informative. I have come to the realization that we live in a pretty good school district!
Well, I work in a few hours so I need to go start damage control on everything the kids got into this morning, while I laid in a heap on the couch. Enjoy the snow!
Monday, October 20th, 2008 10:46 PM CST
UPDATE Wed Oct 22nd~
10pm~ After running a temp off and on all day and after throwing up on Grandma tonight, I brought Ky into Urgent Care and found that she has a nice case of strep throat. Apparently, it has been going around Ky's pre-k class. Her breath is nasty, she is pukey, and she has had well over 20-25 seizures today. I talked to Dr Ritter tonight and he bumped up her dose of Keppra, to see if it will help get her over the hump. We haven't loaded her in over a year and would like to avoid it at all cost. If that doesn't help, he wants us to come up w/ a plan w/ Dr Frost tomorrow. I took tomorrow off and plan on bringing Ava and myself in for a strep test and spending the rest of the day snuggling on the couch. Hopefully our next update will be a healthier one!
7am
Dr Ballard called yesterday and Ky's ERG showed no significant changes and no retinal toxicity. There were some abnormalities that he said everyone on vigabatrin gets but no matter how many times he explained it, I still don't get it! =) Ky spiked another fever in the middle of the night and then threw up all over my bed. Neil sat up w/ her all night, so I could sleep. We are keeping her home today and will probably check in w/ the dr later. ANd the seizures continue on.
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Hi all. After our good report, Ky ended up getting Ava's bug and ran a temp of 101-103 all weekend. She was fine this morning, so we sent her to school but it spiked again this afternoon. She has no other symptoms otherwise. However, the seizure monster has been back full force and she has had numerous seizures the past few days. They don't really seem to faze her but it would be nice to see them go away. She was not able to get her flu shot today when I brought Ava in, so I'll have to reschedule. Huge thanks to Grandma Karen for hanging out with the girls while we were gone. I am a little nervous, as I got bit by some deer ticks this weekend but crossing all fingers and toes things will be fine. Ava has been obsessed with scissors lately and I caught her trying to cut her braid off. She told me, "I want a Fozzie haircut". Unfortunately, Fozzie is my mom's Yorkie. Hopefully she will have hair in our Christmas pictures!
Thursday, October 16, 2008 4:38 AM CDT
Good morning. I am suffering from complete insomnia and want to scream! So, I thought I would do a quick update. Ky has been doing wonderful. Seizures are still few and far between and she has been so happy. I had pre-k conferences at her special-ed school and her teacher and therapist said she is doing great. They can not believe how far she has come from this past spring, especially in her speech development. Her short attention span is probably her biggest issue, which is an on-going work in progress. But she loves school- she literately breaks into a run when Neil drops her off, right into her teacher's arms. She is a little more hesitant at St Bernards but I think it has to do with the big flight of stairs she climb when she gets there. =)But she really seems to enjoy her time there too.
We are still waiting on her ERG results, so I will update when we get those. Ava has been sick the past few days, with a fever hovering around 102. She had the chills the other day and told Neil, "Daddy- I have a seizure." It about broke my heart. =( No 2 yr old should know what a seizure is but I guess watching your big sister have so many teaches you pretty early. Every now and then I hear Ava say, "It's ok Ky-Ky. It's ok." Sure enough, Ky would be having a seizure. Ava is such a good sister to her "Ky-Ky". If Ava still has a temp today, I'll probably bring her into the clinic, to get her ears checked and a throat culture. Surprisingly, Ky has not gotten it yet. (Knock on wood)But I am heading out of town this weekend for a few days of scrapping w/ my oldest girlfriends, so I need to get Ava better so I can go.
As usual, we have been busy staying busy. We took the girls to a fall fest this past weekend and they enjoyed going on a hayride. I'll try and post some new pics later. Ava continues to be naughty at dance class, so we'll see how long going to dance lasts. Ky starts dance next week, which she will have a blast at. We had dinner at my grandparents last night, as they will be leaving for Fl next week. I had an appt yesterday to check on baby #3 and all of the 1st trimester genetic screenings came back negative, thank God. I will have another screening next month and our big ultrasound is set for Nov 26th. We are doing a level 2, to check for signs of TS, even though the odds should be about 1�(but after Kylie, we are definitely not a gambling family!) Please keep the prayers coming for a healthy baby! It's hard to believe we will be at the half-way point next month!
I am going to try and go back to sleep, although I am wide awake. Have a good thursday!
Tuesday, October 7, 2008 1:31 PM CDT
UPDATE Fri Oct 10th~
Ky saw the ped dermatologist, at the U of MN today. Kids w/ TS can get tumors on their skin, which can cause great disfigurement. They keep a close watch, as the earlier laser treatments are done, the better the outcome. Thankfully, they do not see any signs of any tumors on her face, so we do not need to follow-up for 2 years. We did get an RX for Ky's chronic rash but we are so happy not to yet deal w/ the TS skin stuff. Have a good weekend!
Happy rainy tuesday. We have been staying pretty busy around here. Kylie had her ERG yesterday, at the U of MN. It went pretty well, aside from her being beside herself when she woke from anesthesia. We won't have the results back for a few weeks, so for now, we wait. Things are pretty good on the seizure front- still a few here and there but nothing earth shattering. Ky is loving pre-k and has even made some new friends! She is staying busy with therapy 3 afternoons a week and will be starting dance in a few weeks. Her speech seems to be growing in leaps and bounds- consistently speaking in 3 word phrases and is adding 4 words and some short sentences! Some days are better than others but we are seeing more good days than bad ones.
Ava started dance yesterday and although she looked quite cute, it seems like she is the "naughty ringleader" of the group. If the kids are doing something they are not supposed to, she is usually the one leading them to it. We are working on her listening skills, which seem to be on track if it something that will benefit her. Sighhhhhhhh.
Grandma took Ky to the Children's Museum w/ HOPE KIDS last week and had a great time. I spent the weekend in Alexandria w/ my 7940 moms and as usual, had a great time. One more day would've been ideal. =) We had another ultrasound this morning to check on baby #3, as well as some blood tests but will not have any results until next week. He/she looks like an active one! Please continue to pray for the health of this baby.
We don't have a lot planned for the week, aside from the usual. Ky has a dermatology appt on friday, at the U of MN, which Neil will probably take her to. I'll keep you posted if anything pops up. Thanks for checking in!
Monday, September 29, 2008 1:57 PM CDT
I hope everyone is enjoying this beautiful fall day. Neil and I got back from FL this weekend and although we missed the girls, it was hard to get back to the daily grind. The girls had a great time at Gee-ma and Papa's house and Ava was especially attached to Auntie Kari. Ky had a bunch of seizures last monday and then went pretty much the rest of the week without one, until yesterday, when she had a small one during her nap. Although she isn't much for words at times, the beautiful grin on her face when we came home was priceless. She is such a sweetie.
We had a fun birthday party for Ky last weekend and there were many beautiful princesses there. The kids had a great time, although Ava had a hard time understanding why she wasn't getting any presents. I'll try and post pictures when I get a chance.
Kylie has been having a good time at school and she is completely exhausted the days she has 3 hours of school, followed by 2 hours of therapy. She is usually sleeping by the time they are pulling into the driveway. We have had the great pleasure of having Auntie Kari staying close to home for school, so she has been helping us out a lot w/ Ky. Kylie's speech continues to progress nicely. She is now able to tell us more and more what she wants, instead of just whining. She'll say "Watch Elmo" or "More please", followed by "Thank you Mommy". It is a long a frustrating process but we are so thankful for the strides she has made. We have some appointments coming up the next few weeks~ we see the ped on wed for Ky's physical, Ky's ERG next monday, which is the all-day sedated exam at the U of MN, to check for peripheral vision loss from the vigabatrin (keep your fingers crossed this comes back ok!) and we see the dermatologist next friday to check Ky's skin out (looking for skin tumors).
I am heading out of town this weekend w/ my 7940 moms for a weekend of scrapbooking and relaxation. I can't wait! Both girls have junky noses and Ava has been a bear the past 2 days. I am hoping they are not coming down w/ anything. I just found out they were exposed to hand/foot/mouth disease last week at daycare, so that should be a fun one if they get it. =)
And for those of you who apparently have ESP =), we thought we would break the news, since it is getting quite obvious when you see me. Baby Gibbons #3 should be making an appearance in April. We had an ultrasound today and so far, all looks well. I will have another one next week and then another one in Dec. Even though our testing was negative, we will still be watching closely for any signs of TS. Please keep us in your prayers for a healthy baby!
Saturday, September 20, 2008 7:50 AM CDT
Happy birthday Jo-Jo! I can hardly believe you are already 4 years old! You have brought so many blessings to our family and continue to be our sunshine. I pray that this next year brings continued good health, seizure free days, talking in complete sentences and complete happiness for you. You have worked so hard in your short little life to achieve all of the skills you have learned and we are so proud of you. We have a fun day planned for you~ A Princess Party, w/ costumes, a princess cake, games and all of your friends and family. It looks beautiful outside and we are crossing our fingers that this will be the first birthday you have had yet that does not rain or storm. A day of sunshine would be a good omen! We also believe this will be your first birthday that we will not have to load you with diastat to stop your seizures. Ava is dancing around the living room, singing "Happy burday to you!" and you are joining in, saying, "Hap burday Kywee!". Have a wonderful day sweet girl! Love Mommy
PS Happy 5th Anniversary, Neil!
PPS New pic of girls under "view photos" tab, up top.
Monday, September 15, 2008 12:03 AM CDT
Kylie continued to have seizures off and on all weekend. I talked w/ Dr Frost's office on Friday and they said we can increase the Keppra if need be. Unfortunately, it will probably cause her to act more impulsively. They think her weird eye crossing stuff from last weekend was definitely from the Ritalin, so that is crossed off the list for now. Health wise, I think everyone is back up to par. I talked w/ the U of MN today and we got Ky's next ERG scheduled for Oct 6th. This is the test that checks for peripheral vision loss, from the vigabatrin.
It's hard to believe my "baby" will be 4 on Saturday. She hardly looks like a baby any more, yet in so many ways still is, and forever will be, my baby girl. She has been running all over the house this weekend saying "Hap birday Kywee!" I think this year she "gets it" a little more. We are having a "Princess" party on Saturday, with all her little friends. Hopefully we won't be 4/4 for rainy birthdays for her but so far, the weather looks good. Neil and I also celebrate our 5 yr wedding anniversary on Sat and we are heading off to FL next Monday, while the kids spend the week w/ Gee-ma and Poppa.
We had a pretty low key weekend. Nothing exciting, which was long overdue. I spent a few hours with some of my 7940 girls yesterday and we visited w/ Frankie's mom, Megs. We are all going to Frankie's wake tonight and although I love seeing the girls, I wish it was under better circumstances.
Thanks for checking in with us!
Thursday, September 11, 2008 5:26 PM CDT
Please keep the Roth family in your prayers, as their precious baby Frankie, earned his angel wings today and joined his big sister Tori in heaven. www.caringbridge.com/visit/frankieroth
When you have a sick child, people who don't know what to say sometimes use the cliche', "God will not give you more than you can handle". It's times like these that I then wonder, "Really? Who should have to "handle" losing their child? And who really should "handle" losing both of them?" I will be going to my 7th funeral for a child under 5 and it really makes me wonder, "why?" Someday I hope we will be shown the answers.
Kylie has had a lot of seizures today, unfortunately, so I have a call into Dr Frost's office. I want to get things back under control before Neil and I leave for our trip, a week from Monday. Enjoy the rain. It's very fitting for my mood right now. I'm going to go love up my girlies and thank God for every day he allows them to be in my life.
Tuesday, September 9, 2008 5:23 PM CST
Ky is doing much better and we are hoping Sunday was an isolated fluke. We have not given her the ritalin since saturday and she seems much better. I'll have to talk w/ Dr Frost's office to see if we should attempt it again or just totally scratch it. I have had the flu or a really bad cold/ fever the past few days, so we have not done much. Neil stayed home today so I could gt some rest. More later!
Sunday, September 7, 2008 11:46 AM CST
I have no idea what is going on with Ky but we did not have a good night. She was up from 230am to 930am, seizing off and on. For half of the night, her eyes kept crossing. Not sure if it was a side effect of the new med or seizure stuff but it was definitely nothing we have seen before. The seizures were all 45sec-1min and she shook pretty hard. She had about 5 during the day yesterday as well. This is all after having no seizures, or very few, for quite some time. The only changes we made were that her felbatol and keppra are now both pill form and we started ritalin. All of the changes took place yesterday, so something is causing all this. If she starts up again when she gets up, I'll call whoever is on call for neuro and see if we can straighten things out. Not the way to start out the new school year, that's for sure! Wish us luck!
UPDATE Friday 1000pm~
Sighhhhhhhhhhh. After my happy update, homecare came out to flush Ky's port and it would not draw back blood. They came out again to do TPA and still, nothing. So, we have to be at Children's early tomorrow am and see if they can fix it. The concern is that she has a clot at the end of it and they don't want it to break off. My feeling is the tubing is kinked but they may do a dye study tomorrow. If all fails, it will most likely have to come out. Keep your fingers crossed!
Friday, September 5, 2008 2:33 PM CDT
Thank God it's friday! We had an awfully long week and I am glad it's over. We did not end up leaving the house last weekend, as we were under"quarantiene". We literately were in the house from 1pm Friday to 1pm Monday. It's a long story that I don't want to gross anyone out with, so let's just say the weekend was not a pretty one. =) I did get a chance to catch up on some sleep, so that was a bonus.
As for Miss Kylie, can I say again how awesome she is doing? (knock on wood!) Since we increased her vit B6 a few weeks ago, the seizures have been few and far between. Her attention span may be a smidge better but nothing to get too excited over. She started pre-k at St Bernards on tuesday and although we had to peel her off our legs the first 2 days, she seems to be enjoying it. Her aide, Lynn, meets us at the door and we walk Ky into class. Lynn said Ky participated in circle time and even gave the boy next to her a hug when "Simon says hug your friend". She wasn't as sure about playing on the playground but her PE skills have never totally been up to par. =) We had her orientation for pre-k for ECSE last night and met Ky's new teacher. Ky was again hesitant to go into the classroom but Ava lead the way and then she seemed fine. On tueday night, we signed Ava up for dance class, which I really think she will enjoy. She loves to be the center of attention and it will be nice to have something just for her.
Ky had her 4 yr check-up today, (can you believe she will be 4 in 2 weeks!), and the dr said she looks great! She is 41lb and 39 1/2 inches, which puts her at the 50th �or height and the 75th �or weight. I did express my concerns about her 6lb weight gain this summer and the fact that she would eat all day if we would let her- she constantly wants "Moora". The dr asked how her attention span is at school and I told her it was the teachers' #1 complaint. Soooooo, our dr wants to try a low dose of Ritalin and see if it is enough to supress her appetite a bit and help her focus better. She said kids who have seizures tend to have a tough time with their attention and people who have problems with their attention tend to over eat. So, we'll cross our fingers and see what happens. It would be wonderful if we could see progress in both areas. We are still waiting to find out when Ky will have her next ERG, which is supposed to happen next month. Hopefully the vigabatrin is not affecting her vision.
We have a busy weekend. I am off tonight, which will be nice, since I have a killer headache. Tomorrow morning, I am taking Ky to get her 4 yr pics. In the afternoon, we are having all of my high-school girlfriends and their kids/hubbys over for a BBQ. On Sunday, the girls and I are meeting my cousins and sister-in-law for brunch/lunch. Neil and I are getting excited to go on vacation in 2 weeks, our first vacation alone in 5 years! We are going to FL for the week, without the kiddos. My parents are watching the kids and Ava is beyond thrilled to hang out with her 2 favorite people, Auntie Kari and Alex (the exchange student). =)
Thanks for checking in with us and again, please keep baby Frankie in your prayers~ www.caringbridge.com/visit/frankieroth
Tuesday September 2nd, 2008 4:40PM
Not sure how many people still keep up w/ this site on a daily basis but if you are reading, please keep the Roth family in your prayers. Little Frankie is fighting the biggest fight of his life right now and desperately needs all of the prayers we can send up for him. He is currently in heart surgery and his little heart does not want to start. His mom, Meg, is in my 7940 mom's group and lost her daughter, Tori, to brain cancer, last January. www.caringbridge.com/visit/frankieroth
Friday, August 29, 2008 7:19 AM CDT Good morning. It's hard to believe summer is just about over! Fall is my favorite season, so I am not complaining. =) The girls were still both sick last weekend. I got home from work early last friday and Ava had a 104.7 temp. By the time I got her cooled down and sleeping, Kylie was throwing up. But by morning, although they weren't in 100 appy moods, the fevers were gone and they were better. We went to the fair both sat and sunday mornings, which was a hit with the kids. Their favorite foods were the wild rice corn dogs and ice cream cones. On sunday evening, we headed over to my grandparents house, for a welcome back party for my brother. It was good to catch up with our family and the girls had fun playing with their cousin Maddie.
This past week, we officially registered Ky for pre-k at St Bernards. We love her new teacher and the PCA we hired to go with Ky to class is great. I am hoping it will work out well. She will be in the 3 yr old class, since she misses the cut-off for the 4 yr old class but with her development, the 3 yr old class is a better fit anyway. Next week, we will go meet her new teacher at her special ed school, which is through our local school district. She will not have the same teacher she did last year, which is a huge bummer since we loved Megan, but her new teacher actually was doing her internship (or something similar) when Ky was in the birth-3 program and had been to our house many times with the teacher that came, so she is familiar w/ Ky. I spoke with her yesterday and I think things will work out just fine. This fall, Ky will go to pre-k 5 days a week and then on tues, wed and thurs, she will have 2 hours each day of therapy in the afternoon. I will hardly get to see her! Both her and Ava have given up their afternoon naps, so it will be nice to have a few "quieter" afternoons a week. =)
Kylie continues to do very well. Since increasing her vit B6 last week, we have hardly seen any seizures (shhhhhhhh!) Her language has really been booming too. For the first time, I witnessed her going down the basement steps by herself. At her program we send her to in Burnsville, they have been working on side-steping and it really is working! The huge grin on her face when she got to the bottom was priceless. I wish I had a camera!
I better sign off. We are getting ready to leave for the MN Zoo in a bit. My mom and their new exchange student, Alex, are going with us. The girls adore Alex- it is so cute! I am scheduled to work the next 4 days but I am crossing my fingers I get off a day or 2, do to the RNC, (our census is pretty low). We are getting family pics taken in the morning through Hope Kids and there is a neighborhood BBQ we would like to go to on Sunday. Hope you all have a wonderful weekend!!
Friday, August 22, 2008 8:04 AM CDT
Three years ago today the Olson Family said good-bye to sweet Drew. Please keep them in your thoughts and prayers today.
www.caringbridge.org/mn/drewolson
The Roth family is back in the hospital with Baby Frankie. He needs all our thoughts and prayers right now~ www.caringbridge.com/visit/frankieroth
Good morning. Both kids have been sick all week and I am exhausted! After Ky got up at 330am on tues night, it was Ava's turn to get up at 330am wed night. They have both had fevers all week and Ava's hit 102.4 this morning. She acts completely fine though. Ava saw the ped on wed and she does have a nasty ear infection. She is running around in her Minnie Mouse undies, wearing "Rescue Pack" and you would never know there was a thing wrong with her. =)
We saw Dr Frost for Ky, on wed. He is very pleased with the progress she is making. Her showed us her MRI, which didn't show any change, he is switching over her Felbatol and Keppra to pill form, so we will be done with liquid meds (yeah!) and both doses will be slightly decreased. Since her last kidney scan was clear, she doesn't have to have them rechecked until she is 10 and he thinks she most likely will not have kidney issues. Of course, this disease is very unpredictable, but things are looking good so far. We don't have to follow-up with Dr Frost for 6 months, which is a milestone in itself!
After meeting with Ky's new pre-school teacher, we had a change of heart and decided we are going to send her to St Bernards instead, where all of my siblings and I went to high-school. We met with the teachers there and they are wonderful. I am hoping it will be a good fit. We have a lot of paperwork to get in order before then, so it will be a rush.
My parents are having a German foreighn exchange student stay with them for the next year and we got to meet him this week. Ky has taken a great likely to him and loves giving him her 100 watt grin. We stopped at my parents last night, as my mom had a petting zoo over for her daycare. Ava immediately went right up to the animals, while it took Ky a little while to warm up. We have a family dinner on Sunday at my grandparents, so I am hoping everyone is feeling 100�y then. I need a long nap and then I think I will be feeling a little better. No time for it today but maybe tomorrow. Have a great weekend!
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Tuesday Aug 19, 4:23 AM
Good morning. Kylie and I have been up since 3:30am. She spike a temp in the middle of the night and was so restless and beside herself, I caved and we just got up. She is comfy on the couch, watching "Lilo & Stich", why I catch up on paperwork. Thankfully, I went to bed at 8pm last night! We had her in to Urgent Care on Sunday, as her cough was horrendous, she had a fever and was just plain miserable. She has both a sinus and ear infection, so they started her on antibiotics. Neil took her, so the antibiotics she is on does not usually work and she will probably need to switched over to the one that does. Both of her tubes in her ears have fallen out, so I pray we don't have a long winter ahead of us of ear infections.
The golf tourney was a huge success. We raised nearly $22,000 to benefit research for TSC. Thank you so much to all of you that participated! Saturday was a beautiful day and I think everyone had a great time, (and according to the drink cart girl, some more than others!) A huge thanks to Jason, for watching the girls for us for the day. We really appreciate it!
Aside from being sick right now, Ky's seizures have been pretty well controlled, (although the last time I posted that, she had a ton the next day!)Her speech amazes me- she is saying more and more every day and it is so much easier to understand what she wants and needs. She just said to me, "Mommy- watch Elmo". A few months ago, it would've just been "Elmo!" She is consitstanly speaking in 2 word phrases, more often than not speaking in 3 word phrases and even putting 4 words together at times. She still has a long way to go, as she does mispronounce a lot of words but for the most part, she is doing great. We have an appointment with Dr Frost tomorrow and although he saw her at the golf tourney, I am excited for him to see how great she is doing! I will try and post some new pics soon, since I finally figured out how to work my camera. =) Have a great day!
Saturday, August 16, 2008 7:24 AM CDT
Good morning. We have a busy day ahead of us, as the 4th Annual Kylie's Hope Charity Golf Tourney kicks off this afternoon. Looks like we are going to have beautiful weather while we raise money for a great cause. The Beecher family is staying with us and helping us get ready- thanks guys!! I'll update later on how things went~
As for Kylie, she has a nasty cold that she just can't shake. She has been sick for 2 weeks and I am assuming she has a sinus infection and will need a little something to help it clear up. She had a few days this week of a lot of seiuzures (I think she has 12 one morning, which was totally weird) but is doing better now.
We went to the Epilepsy Stroll on thursday, in support of "Drew's Crew". My mom was probably the biggest attraction there, dressed in her green foam glasses, riding her 3 wheeled adult "trike", which was all decked out, along with her little dog in the basket. She cracks me up. =) We had Sylvie's family over for dinner on Wed and it was nice to catch up outside of the hospital. (Sorry we didn't make it to the zoo guys~ we were swamped w/ golf stuff!)
Enjoy the beautiful day!
Tuesday, August 12, 2008 7:18 AM CDT
Good morning. We are trying to play "catch-up" this week, as both Neil and I worked all weekend. We have a very busy week ahead~ Neil is going to the Twins game tonight w/ my dad and brothers, I am going to a double baby shower w/ the girls, tomorrow night are meeting Sylvie's family, (whom we met on 7940) for dinner, then are heading to my parents to celebrate my brother's birthday nd on thurs, we have the Stroll for Epilepsy. Hopefully the rain will hold off! We are also busy getting ready for the golf tourney, which is on Saturday. The forcast isn't looking that great, so please pray for no rain or storms! I think we had enough of it last year, so we would love a year of good weather!
Kylie continues to do great. She is getting over a cold and has been having a few hard seizures at night but that aside, the progress she is making has been so nice to see. She has an eye appointment this morning with Dr Ballard, so hopefully there has been no changes with her vision. I have a meeting tomorrow with her new pre-school teacher and principal, so we can make sure we are on the same page for the fall. She is going to be so busy this fall that I will barely see her during the day!
Off to get the kids ready for the day. Enjoy the rain!
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If anyone plans on golfing or attending the dinner for the 4th Annual Kylie's Hope Chairity Golf Tourney, which raises money for research of tuberous sclerosis, or if you would like to purchase raffle tickets for $5 each, please let us know as soon as possible. The tourney is this saturday, Aug 16th. Thanks!!***
Tuesday, August 5, 2008 10:26 PM CDT
Thurs 230pm~
Ky's MRi is stable. They confirmed she definately does have a SEGA but we will probably follow up in a year.
Thanks for all your prayers!!
I swear I need personal assistant for my mounds of paperwork, unopened mail, 800 emails and ever growing ginormous mound of laundry (yes Jen and Shannon- it's nearly back). Anyway, Ky had her MRI Monday morning. We were 7 minutes late and the receptionist snapped, "Oh, I didn't think you were coming". Lady, it took us 15 minutes to walk from the car to MRI. I am not carrying Ky if I can help it. Things went smoothly after that. We were greeted by the ladies who always prep Ky for her scans anad they could not believe how big she has gotten, (neither can I- I about died when the scale hit 41 lbs at her pre-op appt. She was 36 lbs at the beginning of summer- yikes!) Thankfully, they accessed her port on the first shot and got a good blood return, which is always huge in our book. They said her scan would take about 45 min but took about a half hour longer. The nurse said they had to take extra pictures, so I don't know what that means. We got her labs drawn when we were there, so homecare won't have to come out this month. I haven't heard any results yet, so I will update more when I know.
Ky had her dance recital tonight and looked as cute as ever in her blue eyeshadow and pink lipstick. She did ok until the end, when she saw Ava and me and wanted nothing more to do with the performance. We hit up a few neighborhood block parties in my mom's neighborhood after and then came home. Both girls did great camping and we really had a good time. I woke up Saturday feeling like a truck hit me, then did fine for a few days and now feel crummy again tonight. I think my allergies have found me again and I am miserable! (Or I am allergic to my husband, as it did start up when he walked in the door- just kidding!)
Nothing else to report. We are meeting w/ Ky's new PCA tomorrow and I work this weekend. We are busy preparing for the golf tourney next weekend and can't wait until it is over. Oh, and Ky continues to put 3 words together, sometimes even 4! You have to understand her chinese dialect to fully appreciate what she is saying, but luckily I was a chinese translator in a former life. I am truely hopefull she will speak in full sentences someday. There is so much in there just waiting to come out!
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****If anyone plans on golfing or attending the dinner for the 4th Annual Kylie's Hope Chairity Golf Tourney, which raises money for research of tuberous sclerosis, or if you would like to purchase raffle tickets for $5 each, please let us know as soon as possible. Thanks!!***
Wednesday, July 30, 2008 2:35 PM CDT
Hi all. Kylie has been doing wonderful lately. She is talking more than she ever has before and even said a few 3 word sentences yesterday- "Daddy, more please" and "Auna go side"- (Ava go outside). We are loving every second of it! She is so proud of herself too. She did have large flurry of seizure activity yesterday but things have seemed to calm down a little today. I am hoping it is not the heat and humidity, as we will be camping in tents this weekend in Southern MN. Perfect weekend we picked, with the heat index being near 100. =) We are going w/ friends and plan on taking the girls tubing down the river~ wish us luck!
The girls enjoyed our weekend at the cabin and it was good to catch up w/ family. The girls had a blast playing in the pool (they were not into the lake at all) and I went jet skiing for the first time. Neil even got a round of golf in. On friday, we drove back from the cabin to meet Uncle Andy at the airport and went to the Mall of America for a few hours, to check out the new theme park- Dora style. We went on a few rides, which the girls loved.
We are going swimming tonight and are going to try and catch a movie tomorrow. Kylie has her last night of gymnastics tonight, her last day of dance next week nd finished summer school last week, so things should be slowing down nicely. We got a letter announcing the new principle of Ky's private school and were excited to learn it is a family friend. We are very comfortable with our decision to send her there this fall. Ky has a pre-op physical on friday morning and both girls go to the dentist in the afternoon. We will head out cmping after that. Ky's MRI is monday morning at 730am. Please pray for good results! I will try and update after that.
Also, if anyone sees Ky in the next few weeks, please know that her hair is not dirty- we just can't get the vasoline out (LONG story). =)
****If anyone plans on golfing or attending the dinner for the 4th Annual Kylie's Hope Chairity Golf Tourney, which raises money for research of tuberous sclerosis, or if you would like to purchase raffle tickets for $5 each, please let us know as soon as possible. Thanks!!***
Wednesday, July 23, 2008 1:00 PM CDT
We are heading off to the cabin tomorrow for a long weekend but thought I would update quick. Ky continues to do well, despite the decrease in Keppra I did a few weeks. Her attention seems slightly better since I did it, so I hope we can go down again in a few weeks. I talked w/ Dr Frost's office and we are going to start her on Vitamin B6 2x a day for her attention (or lack of!) It can also help w/ seizures, yet since it is natural, I am ok w/ it. Seizure wise, we have been seeing 0-2 a day, usually just a few a week. All of Kylie's therapists have been commenting on how much she has been talking lately, so hopefully it will continue in the right direction. She has been having quite a few temper tantrums lately, which many seem to be set off by her frustration at our inablility to always understand what she is trying to tell us. Ky did take a spill yesterday and skinned her nose up a bit and that has been bugging her. I took the kids bowling yesterday, which will make a point to not repeat for quite awhile!
We had a busy weekend. I got together w/ my 7940 girls for brunch on saturday and then we went to the Twin's game that night, to help promote "Journey for Jess". The girls did fairly well, although Ava was a little wild. And Shannon~ whatever clapping/hand thing you were doing w/ Ky, she keeps talking about it. She says "Annon! Annon!", then moves her hands. It's cute. =) I worked the rest of the weekend, so we did not do too much.
Ky has her next MRI on the 4th, so pray that the tumor is stable and nothing new has popped up. We are going camping next weekend for the first time since having kids, so that should be interesting. I can only imagine how fun sleeping in a tent w/ 2 kids and a dog will be. =)She has her last day of pre-k for the summer tomorrow, which will be a nice break.
My brother is home from Iraq and his bus gets in Friday, so we may drive back to see him, then go back to the cabin. My dad's family is all getting together on Saturday, so we will head over to their lake then. Hoping the weather is good! Have a good weekend!!
Thursday, July 17, 2008 7:19 AM CDT
**NEW PICTURES under "view pictures" tab. **
Good morning. We have all woken up with junky noses this morning, especially Kylie, so hopefully it will be a quick passing cold. She is continuing to do very well, despite an occasional seizure. We started to decrease her Keppra this week, with the hope that her impulsiveness will improve. It got worse when she started the Keppra, so we are hoping to see improvements. She is at the highest dose of vigabatrin that she can be at, so we are hoping her seizures continue to stay away and that we don't have to increase anything else. Her speech therapists have said this is the most talking she has ever done and all of her therapists have commented on the huge gains she has made since Sept. She finishes up summer school next week and will get a break from it for the month of August. She has a ton of appointments coming up in the next few weeks~ physical, MRI, neuro, eye check and dentist. I realized yesterday it has been over a year since she saw the dermatologist, so I need to make an appointment for that as well. She will also need to have another ERG eye test in Oct, to check for peripheral vision loss, as well as her 4 yr check up in Oct (yikes! where has the time gone?) Ky has been a little on the naughty side lately, very defiant if she doesn't want to do something. In a way, it's nice to see her expressing her own opinion on things, instead of doing whatever we want her to. However, she had her port flushed by homecare yesterday and let's just say it did NOT go smoothly. Ky was completely ticked off.
I think we got her PCA situation figured out for fall- we just have to meet with them soon and figure out hours. She will have a PCA attend private school w/ her this fall, to help keep her on task. I got to sneak in and watch her dance class on tuesday- those kiddos are so cute and Ky loves it. She napped late yesterday, so she missed gymnastics. Both her and Ava have decided that they have come to a point in their lives where they do not need naps. It is a huge battle every day to get them to go down and I am just about ready to give up. However, they are monsters by 6pm if they don't sleep.
Neil got a chance to go golfing on Saturday, while I took the kids to a graduation party and birthday party. Ava decided to go swimming w/ her clothes on, not once but twice. She is a regular fish. Neil met us there and we headed off to my aunt's 50th b-day party. The kids got to play with their cousins whom they don't see often enough and we got to catch up w/ the family. On Sunday, Sue and I took the kids garden shopping and then I headed over to my parent's house for a birthday dinner for Neil and I.
On Saturday, I am getting together for brunch with my 7940 ladies. Later, are heading to the Twins game with the kids, to support the Journey for Jess foundation. We can't wait to see the Beecher family! The girls adore Jason and totally eat up his attention. Ava has been wearing underwear this week, with mixed results but we are working on it. Ky still has a long way to go in that department. My wallet would love to stop buying diapers though- nearly 4 years is long enough!
Hope everyone has a wonderful weekend!
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August 16th is the 4th Annual Kylie's Hope Charity Golf Tournament. Tee-time is 1pm at Como Park Golf Course and dinner/raffel and a performance from Chris Hawkey of KFAN will take place at Joe Sensor's Restraunt in Roseville, following golf. If anyone would like to sign up, help out at the event or donate prizes for the raffel, please email me at riau2@aol.com. All proceeds go to research, to help find a cure for TSC. Again, thank you!
Thursday, July 10, 2008 7:06 AM CDT
Good morning. It is hard to believe summer is nearly half way over! We continue to sty busy round here. Ava has been helping me work in the garden and both girls have been enjoying being outside. Kylie is seeming to tolerate the heat much better this summer, so we are definately taking advantage of it. We have become parade jumkies lately and went to another one last night. There was a car decorated as a birthday cakae, to celebrate MN's 150th birthday. I pointed it out to the girls and Ava said, "Happy Birthday to Aba Grace!" She thinks any sort of prty or celebration should be about her. =) Speaking of birthdays, we celebrated Neil's 31st birthday on tuesday. Thanks to Auntie Kari, we got to get out to have dinner w/ some long neglected friends. =) The girls both started their gymnastics class tuesday night and they loved it. I was a little nervous for Ky, since the class is for "typically developing kids". After saying "hi" to every mom in the class, she actually suprised me. She is by no means a future gymnastics star but followed along pretty well and even went to the music circle w/ the other kids, without any prompting and participated in the song. The class is for kids 2 1/2-5 yrs and w/ Ava being just shy of 2 1/2, she is by far the youngest one in the clss. I would say they aare mostly 4-5 yr olds. However, that does not stop her from pushing the big kids off whatever equiptment she would like to use. We are going to have to work on that. =)
On another note, Vigabatrin is going to be presented to the FDA soon for approval to use in the US. I am writing a letter of support, to tell how much it has helped Kylie. Please pray that this medication gets approved, so we can get it in our local pharmacy, verses having someone go to India for us. I should not even say it but Ky's seizures have been very stable. She is putting more words together but has been more whiney lately. Plus, she is packing on the pounds! She is by no means fat but definately not the skinny minnie we once had. My back is starting to take the brunt of it!
We had a good 4th of July. Neil and I, along w/ Gma's Karen and Sue, took the girls to a parade, then to Izzy's Ice Cream Cafe for a treat. We later had a BBQ and then went to my parents that evening to watch the Twins game and had dinner. We took the girls to watch fireworks and went to bed rather early. Ava and I got to talk to Uncle Andy (who is in Iraq) on Sunday and she told him all about the fireworks.
We'll off to start the day. We have a busy weekend, so I'll try and update more after that!
August 16th is the 4th Annual Kylie's Hope Charity Golf Tournament. Tee-time is 1pm at Como Park Golf Course and dinner/raffel and a performance from Chris Hawkey of KFAN will take place at Joe Sensor's Restraunt in Roseville, following golf. If anyone would like to sign up, help out at the event or donate prizes for the raffel, please email me at riau2@ol.com. All proceeds go to research, to help find a cure for TSC. Again, thank you!
Friday, July 4th 2008 8:25am
Happy 4th of July! We are busy making dessert for our picnic later today. Later this morning, we will continue our annual tradition, by going to a local parade w/ Gma Sue and Gma Karen, then off to get ice cream. We will have a picnic later today, then off to G-ma's and Poppa's for dinner and fireworks, then to St Paul to watch the firework display. I took vacation today but then work the rest of the weekend. Huge thanks to Uncle Any for protecting our country, as well as to all the other men and women serving our military. Andy will be home in a few weeks from Eye-wack (as Ava says) and we can't wait to see him!
This past week flew by. We have been busy working in the garden and yard and things are nearly done, (after living here for 5 years!) On Sunday, my mom, the girls and I went down to Stillwater for lunch and shopping, then stopped in to see Great-grandma. The St Croix river was so high, it covered the path to walk on. So, we took our shoes off and went for a little dip. Ava loved it!
Kylie started her pre-k summer sessions this week and is happy to see her friends again. She will go 2 days a week, until the end of July.
My sister and I took the girls to the beach tuesdy evening, for a picnic and a swim. It was the first time either of them have been to the beach and they LOVED it. We will have to make a few more trips this summer.
I spoke w/ Dr Frost's office this week and we told them we did not increase the zonegran. Aside form 1 seizure last night, we really have not seen much this week. They said we are at the max amount of vigabatrin we can use, so the zonegran is what we need to increase if needed. So, we will see how she does. She has her MRI 1 month from today and we will follow-up w/ Dr Frost on the 20th. We are keeping our fingers crossed that there is no tumor growth.
I can't remember if I shared this yet or not but there has been some exciting advancements in the TS Community. I have spoken of a drug called "Rapamyocin", which has been shown to shrink the type of tumor Kylie has. Now, they are finding that this same medication is reversing the symptoms of autisim and cognitive impairment in mice. This is a huge discovery and we are so excited! This is what your donations are doing when you sponser us for the walk or Kylie's golf tournament- you are helping to make a difference! So to everyone who has helped, THANK YOU!!!! We pray that discovery continues to help find a cure for TS. I do know a family whose daughter strted the rapamyocin and her austisic traits, I believe, have greatly diminished.
August 16th is the 4th Annual Kylie's Hope Charity Golf Tournament. Tee-time is 1pm at Como Park Golf Course and dinner/raffel and a performance from Chris Hawkey of KFAN will take place at Joe Sensor's Restraunt in Roseville, following golf. If anyone would like to sign up, help out at the event or donate prizes for the raffel, please email me at riau2@ol.com. All proceeds go to research, to help find a cure for TSC. Again, thank you!
Please keep the Olson family in your prayers, as tomorrow is the 2 year anniversary that their beloved McKenna earned her angel wings. We love you guys!
Sunday 950PM~
Please keep the Roth family in your prayers tonight. They lost their daughter Tori to cancer and just found out their new baby boy, Frankie, who was born yesterday, has a heart defect and needs open heart surgery. Tori and Frankie's mom is part of my 7940 seizure moms group. www.caringbridge.com/visit/frankieroth
Ky has had a flurry of seizures this past week, most in the morning a few others scattered through out the day. A few different mornings, she was seizing every 5 minutes but then things slowed down. I spoke w/ Dr Frost's office and they want us to increase the zonegran back to what the dose was before we last decreased it. We decided to wait it out through the weekend and see how she does. I think today was a little better. I don't know if the heat had anything to do with it or not but we are trying to keep her inside as much as possible. Her zonegran level was about half the value it usually is, due to the wean, so maybe that is what is really affecting her. I do not think we will be able to totally get her off of it. She stills seems ok cognitively this week despite the increase of seizures, as compared to the previous increase, when she was totally off. I think she now knows her entire alphabet, which she loves to show off to anyone who will listen to her. She loves telling us what each letter is and then gives us a huge grin. You can tell how proud of herself she is. Since Neil and I have not been taking Ky to therapy, we have no idea how she is doing, aside from the,"Good", replies we get from my sister. =)
As for Ava, the nukie has been gone since the balloon launch. The first few nights were rough but I think it is getting better. She still asks for it every night, then I remind her she sent it to the babies in heaven. She pouts and says, "Kenna nukie" and then settles down. She is cracking us up with her ever expanding vocabulary. She wears Dora pull-ups and as I was changing her, I told her that Dora does not like it when Ava goes in her diaper and gets Dora's "pretty dress" wet. I told her it makes Dora sad. She said, "Ok." I swear, 5 seconds later I get an unpleasant whiff and asked Ava what happened. She said, "Mommy! Dora sad!" I guess the concept is half way there!
We have no plans for the weekend, aside from taking Great-grandma out for lunch on Sunday. This is our only free Saturday of the whole summer, so we are planning on enjoying it! I hope you all have a good one!
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Monday June 21 post
Not much new to report around here. Kylie continues to do very well. She has gotten so tall lately and has become a pro at getting whatever she feels like eating from off the counter- it's driving me nuts that she can reach everything now! She started dance and gymnastics last week, which I hear she loves. Auntie Kari has been taking her for us. Ky even picked out a little gymnastics outfit, complete w/ the jacket that spells our "GYMNASTICS" in sparkely letters, (however, Ky yelled out, "Hockey!" when she saw it. ) =) She begins her summer school program next week, so we will be super busy then. Ky is having probably 1-2 seizures a day but we are waiting to hear back on her lab results from Thursday before we make any changes. I am hoping things just need a little tweak from her growth spurt. Despite these seizures, she continues to be more focused and is improving in so many ways every day. She even used 2 forks at one time to eat her cake the other day. I guess she got it in her mouth faster that way. =)
I worked all weekend, so things are a mini disaster around here. We did get to go to Mary's b-day party on Saturday, so the girls had a fun time doing that. We plan on going to a parade tonight and have dinner plans w/ friends tomorrow night.
Ava was giving me a hassle earlier about going down for a nap. Finally, she yells down from the top of the steps, "Mommy! I good girl", (I think she meant "big girl"), "Nukie for babies. Nukie go with balloon high in sky. Nukie to baby in sky". (We talked about doing this at the JFJ ballon launch) So, we tied her pacifer to a helium balloon and away it went! We explained before she let go that once it was gone, she would not have a nukie anymore. "Baby in sky", she said. After she let go and watched it fly away, she looked a little concerned but we talked about how her pacifier would go to the babies in heaven. She decided it would be ok if "Kenna" had her beloved nukie. She only used it at naptime and bedtime, so we will see how the week plays out. I have a feeling we have some sleepless nights ahead of us!
Good-bye Nukie!
I should turn in, as I have an early day ahead of me. Thanks for checking in!
A few pics from JFJ (the ones of Ky were all blurry)
The girls beloved buddy (Buster)
Tuesday, June 17, 2008 9:57 PM CDT
Good evening. We had a whirlwind of a weekend. Luckily, Ky's seizures seem to be under control again, after a minor adjustment in her med wean. I don't think we are going to be able to get her any lower on the zonegran than where she is at now. Oh well. We may try lowering the Keppra a tad instead. Here is a recap of the past few days~
On Friday, I had a rare evening off and Ava and I decided to hit the mall for some Father's Day shopping. Note to self~ Ava and the mall are NOT a good mix. She threw an all out hissy fit each time I tried to bring her into a store. When she finally got in one, she hid in the clothing racks, army crawled away from me on the floor and got rubber legs every time I tried to pick her up. I about died. I guess this mother/daughter duo will not share the same passion for shopping. Luckily, Ky loves to shop, so she can be my mall buddy. =) I worked until wee hours of the night to finish my sister's scrapbook and was pretty tired the next morning. We had my sister's grad party on Saturday and the girls had a great time visiting with everyone. Ky shared dinner w/ anyone who would feed her and Ava kept kissing a little boy. She is already giving her dad grey hair! We got a late start to Fargo on Sunday, which worked out great, since my mom decided to come with us. I guess I didn't realize how much help I was going to need but the girls were constantly running in 2 different directions when we got there. The "Journey for Jess" kick-off was amazing. It was a perfect tribute to a perfect girl. The girls kept pointing at Jess's picture board and Ky would say "Ess! Ess!" They both got butterflies painted on their faces and their hair painted pink (which still won't come out!) They had their fill of treats and Amy danced and twirled to the music, played by Jess's Uncle Justin. Ky kept running up to him and touching his gutair while he was playing. It was pretty cute. Ava got in a little scuffle w/ Danielle, C's sister, over the bubbles but all ended well. =) The trip home was a long one, full of screaming and crying girls. We did make a quick stop at the outlet malls and stopped to get some ice cream.
Yesterday, I met with the pre-school teaacher from our neighborhood Catholic school. Her back ground is in special education and her sister has epilepsy. Since her special-ed preschool she goes to now suggested she be pulled out of class to spend time w/ "typical" kids or go 2 days of special ed and 2 days of regular pre-school, we are considering just doing the 2 days of special ed and sending her to private school the other 2 days a week. I don't think I would do it if this teacher did not just seem meant to be for us and she also is being super accommidating. She thinks Ky would be a great addition to the class and she could learn so much from them and the other kids would get to learn from her as well. I told her Ky knows most of her alphabet, which I don't think she believed, until Ky pulled out a letter game and started naming all the letters. She said most "typical" kids her age don't know that, so she will be ahead in one area! She is going to try and get grants for any adaptive equiptment Ky would need, as well as have parent volunteers come into the class to work w/ Ky the days she is there. Our biggest reason for sending her would be not to learn how to write letters or numbers but to get a chance to socialize w/ "typical" peers. I was concerned that Ky would be too much work for the teacher and that she woul take away from the class but the teacher was very reassuring. I think we'll try it and if it doesn't work, at least we can say we tried. I would love for Ky to be able to go to a school that can celebrate the holidays and Jesus. I went to Catholic school from K-12th grade, so I am probably a little biased. =) Anyway, I have to discuss this w/ her special ed teacher first but I think it will be the direction we are going to go in. If it works out, Ky and Ava would be able to be in the same preschool class during the 2009-2010 school year, which would be awesome.
I think I have rambled on long enough. Please keep the Beecher family in your prayers, as tomorrow is the 1 year anniversary Sweet Jess earned her angel wings. It's funny how fast time passes, even though it seems like they have been without their sweet girl forever. But it seems like yesterday that we smelled her sweet hair, played w/ her cute painted piggies and held her soft hands. She will forever be in our hearts and never forgotten. Kiss your babies tonight.
Monday, June 9, 2008 11:03 AM CDT
UPDATE Wed June 11~
Just when things get all comfy, the seizure monster reminds us who really runs the show. Unfortunately, Ky has been having seizures the past few days, nothing too bad, until she had 5 the first hour she was awake today. She has been whiney the past 2 days and at therapy this morning, they said she was really distracted and off, somewhat spacey. They said she had been doing wonderful the past 3 weeks, which makes sense, as she wasn't having seizures then. Ava has been God-awful the past few days, so maybe they both have a bug. Who knows. It's kind of like Ky is this beautiful butterfly, stuck in it's cocoon. The more meds she comes off, the more of her beautiful wings we see. Then the seizures come roaring back and she retreats further in the cocoon. So I guess we sit and wait. We play the med game. We continue to push her in therapy. And we hope that one day we will be able to see all of her wings, and she will be the little girl that we know is trying so hard to come out.
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Good morning. Our seizure break lasted exactly 2 weeks and then Ky had 3 yesterday. Kind of discourging but what can you do? None yet today. Ky also woke up at 2am yesterday and stayed up until naptime, so maybe it was from being over tired or maybe she woke up because she knew something was brewing. However, her first seizure yesterday was because she was laughing so hard. Ava and Ky were drinking lemonade, spitting it on the glass of the front door, then were licking it up. Funny for a 2 & 3 yr old- not so funny for mom. Although, I do love hearing their deep belly giggles, so who can get mad at that? =)
We are still going to go ahead a decrease the zonegran again tonight and cross our fingers it won't rock the boat. She should be totally off of it in 8 weeks and then we will hopefully move on to decreasing another med. And aside from the seizures yesterday, she continues to do wonderful. In speech on friday, she said to the therapist, "Daddy? Where he go?" I wish I could've heard it! At home, we have been hearing more 2 word phrases, "Hi Kari!" "No AJ!", "Mommy heart!" (showed me a heart)And she continues to amaze me w/ her letters. I think she knows just about all of them. On our walks, more often than not, she does not need to get in the stroller or wagon. She pretty much just goes. She started her busy summer schedule today. Mondays she will have PT & Speech, followed later by her conductive education program. Tuesdays, she will have school and dance, Wednesdays she has OT, PT and gymnastics, Thursdays school & conductive ed and fridays, OT and speech. Auntie Kari signed on to do most of her PCA hours this summer, so she will be taking Ky to most of her therapy. This allows Neil to go back to his regular hours for the summer and he can get home right after dinner, verses 9pm. So, we will enjoy a little more family time this summer.
We had a pretty low key weekend. I worked a double shift Friday night, we stopped by my cousin's grad party on Saturday and I pretty much worked the rest of the weekend. I work this evening and have next weekend off. We don't have much planned for the week, aside from helping my mom get ready for Kari's grad party and I have to finish her scrap book. I am also trying to go back to school this fall, so I need to get my butt in gear and get all my paperwork turned in. I eventually want to get my Master's degree and am looking to do something w/ pediatric special needs nursing. I'm going to take the slow road though, so it will probably take me forever.
Thanks for checking in with us!!
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The kick off for "Journey for Jess" is coming up on Sunday, June 15th in Fargo, ND, at Living Waters Church, 1pm. The event is called "Bubbles, Balloons and Butterflies" and sounds like it will be a super fun time. "Journey for Jess" is an event being put on by the Beecher family, in honor of sweet Jess, who lost her battle to epilepsy last June. Her dad, Jason, will be traveling to many different national parks next summer, taking pictures along the way and seeling them. The proceeds will benefit the MN Epilepsy Foundation and the Tuberous Scerlosis Alliance. We are touched and honored by this. The girls and I plan on driving up to Fargo next sunday for the kick-off. I am taking them solo, mind you, on a 8 hr round trip drive. Pray for my sanity! Check-out Journey for Jess at www.journeyforjess.com Thanks!!
Monday, June 2, 2008 10:00 PM CDT
UPDATE~
The kick off for "Journey for Jess" is coming up on Sunday, June 15th in Fargo, ND, at Living Waters Church, 1pm. The event is called "Bubbles, Balloons and Butterflies" and sounds like it will be a super fun time. "Journey for Jess" is an event being put on by the Beecher family, in honor of sweet Jess, who lost her battle to epilepsy last June. Her dad, Jason, will be traveling to many different national parks next summer, taking pictures along the way and seeling them. The proceeds will benefit the MN Epilepsy Foundation and the Tuberous Scerlosis Alliance. We are touched and honored by this. The girls and I plan on driving up to Fargo next sunday for the kick-off. I am taking them solo, mind you, on a 8 hr round trip drive. Pray for my sanity! Check-out Journey for Jess at www.journeyforjess.com Thanks!!
Good evening. We are still recovering from our long and busy weekend. We had a blast just spending some time together as a family. Neil and I took the girls to Edinbourgh (sp?) Park, compliments of "Hope Kids" on Friday night. The girls had a blast, going down slides, climbing in the tunnels and playing in the gym. Ky had a great time attempting to play basketball. We met a few CB families as well. Afterwards, we took the kids to Izzy's Ice Cream Cafe. The bad parents we are for never giving our kids ice cream cones, Kylie experienced her first real ice crem cone. She finished the entire thing before Ava even got to the cone part. She even ended up finishing Ava's cone, so I guess we will need to go for ice cream more often! On Saturday, we took the girls to a carnival/birthday party at Kids Abilities, Ky's therapy place. Again, they had a great time jumping in the blow-up jump house, playing w/ the bubble machine and enjoying their first cotton candy and snow cones (lots of firsts this weekend!) They crashed hard when we got home but were rested up enough the next morning to hit the Grand Ol Days parade. Ava totally had the princess wave down and Ky loved the Irish dancers. We went out to lunch afterwards and then came home for long naps. This morning, Ky had therapy in Burnsville and I took Ava to the U of MN. She is participating in one of their long-term studies of language comprehension. She will go every three months, through middle school and her results will be compared to kids that speak spanish, who are learning English. She has a huge vocabulary and her comprehension is great but the problem is she still has a 2 yr old attention span. She got to the end of the 5 yr old level of understanding before they completely lost her. So, we get to go back again wed morning, then rush Ky off to therapy. Ky has speech in the morning and Ava has to go get shots. I'm sure that will be a joyous time- ha.
Tonight, Ava and I went to Auntie Kari's graduation, while Gma Sue hung out w/ Ky. As we take Ky off more mediction, the fog continues to lift but with it, a huge desire to explore/get into everything she can get her hands on- from standing on the very edge of her bed, while reading a book, to putting her toy computer in the bath tub and turning on the water, to opening the back door and running right out. She is also talking non-stop, which doesn't bode well for 2 1/2 hrs at church (although, Ava was a SAINT in church, or to her "the castle". She even started singing, "Jesus, Jesus, JESUS!!"). I hate to say it out loud, so I'll just whisper it~ "kylie is doing fabulous!!!" Her speech is growing daily, her strength is better than ever before, she is starting to put 2 words together, she is eating like a champ (and her growing thighs will prove it!). She has actually been running!!! After her seizure in Sept, she couldn't even walk and now we are having a hard time keeping up with her. On more than one occasion, her therapists have said to me, "Whatever you are doing, don't stop! This is the best we have ever seen her" And dare I say it, the vigbatrin has been the biggest blessing since this journey started. Since we increased it a week ago, we have not seen a single seizure. Not one. How amazing is that? We will continue to pray that is the case, as we continue to wean her off some of this nasty medication. Our prayer requests are that she continues to make these great strides and that she continues to enjoy the normal, wonderful days of summer. We have 2 months until her next MRI and with all our heart, we will be praying her tumor is stable. Thank you all who continue to keep our sweet girl in your prayers!!
PS I have been working on a new slide show w/ new pictures, which I hope to post soon. However, I am in a mad rush to finish my sister's scrapbook before her grad party, so I will try to get it up as soon as possible.
Monday, May 26, 2008 8:40 PM CDT
Good evening. We had a pretty low-key weekend. I worked friday-monday, so the girls hung out w/ dad. We had a chilly BBQ at my parents today and Ava kept everyone entertained w/ her antics.
Kylie continues to do well. We did increse he vigabatrin this morning, as we can't seem to shake the pesky seizure or 2 she is having each day. She did grow a couple inches and gained nearly 5 lbs In the past month and a half, as well as continues to battle a sinus infection. Any of the above could cause her seizures to increase and she may need her meds adjusted. We did decrease he morning dose of zonegran today too, which we will hopefully get off of by summer. We have been getting nothing but god reports from her therapists lately, all commenting on how strong and sturdy she seems. She has learned a few new letters and is talking all the time. Most of it is one-two wors/phrases, but at least she is talking. Between school and therapy, as well as dance and gymnastics, she will be busy every day of the week, aside from the weekends. Her schedule slows down by August and we will get a few weeks reprieve before school starts up again this fall and she will be in pre-k 4 days a week. We did get her ERG results back and so far, so good. They do not see any vision loss from the vigabatrin. I can not believe how old she looks lately. She has definately lost the baby face and is truely growing into a beautiful little girl. Her hair is halfway down her back and although I love it, I am so tempted to cut it short for summer. It takes a lot of work to keep it out of her face. She looks like "Cousin It" in the morning. =)
We are looking forward to next weekend. Mainly, because I am off work =) but also because we have a lot of fun family activities planned. On friday, we will be going to Edinborugh (sp?) Park, an indoor playground/water park, with a group called "Hope Kids". It's an amazing group that plans activities for kids w/ chronic illnesses. This is the first time we will be doing a group outing, so we are excited! On saturday, we plan on taking the kids to the Kids Art Fair in downtown St Paul, as long as the weather cooperates. On Sunday, my sister and I will continue our yearly tradition and take the kids to the Grand Ol Days Parade, on Grand Ave. It should be a fun time!
Big thanks to my brother Andy, as well as anyone else serving our country. We miss you and can't wait to see you!!
I think that's all for now. I swear I will try and get pictures posted sometime this week! Thanks for checking in!
Tuesday, May 20, 2008 9:27 PM CDT
Good evening. It is getting harder and harder to keep up with this website. We are busy all day and seem to have something going every night. A recap of the past few days~
On friday, we had our garage sale (with a HUGE thanks to Grandma Sue, whom without her, we never could have done it). We raised over $300 to donate to the TS Alliance and we got to spread the word on what TS is all about. Friday evening, our good friends the Beechers rolled into town and I spent the evening getting this ready for the morning. Saturday morning was beautiful and we raised over $60,000 for research and support for tuberous sclerosis. Kylie's team came in 2nd place, raising nearly $7000, (after we included the late checks). All I can say is a HUGE THANK YOU to those of you who sponsored Kylie's Hope and to those of you whose prayers kept the rain away! also, to our family and friends who continue to join our team each year. We love you all so much! We were completely wiped out and we all turned into bed early. On Sunday, my sister watched the girls, while I treated myself to a massage, compliments of Neil and the girls for Mother's Day. It was wonderful! Later that afternoon, my sister and I took Kylie and Crabby Pants (Ava), down to Fairbolt, to get their pics taken. Ava, in true Ava fashion, was simply awful. She has truely taken the "terrible two's" to heart lately. She is going to Grandma's for daycare tomorrow so we can take a break from the Queen of Sass. However, her vocalulary has really taken off lately and she does crack us up, especially with her rendition of "Keep Bleeding Love". She has American Idol written all over her. =)
Kylie is doing great. She did come down with a sinus infection last week and started antibiotics for it. She went from a few seizures a week to a few a day again but it seems to be tapering down again. She is walking better and she seems to be getting stronger and stronger each day. Her speech is still very frustrating but I guess I am glad she talks some and can communicate her needs for the most part. I would just love to her sentences from her. She will be attending her school's summer program for 6 weeks, 2 days a week. She will also continue to get private PT/OT/Speech through summer, most likely continue her conductive education program, will start a social skills class, and will take dance again and do a gymnastics class w/ Ava. Whew! We continue to be busy. We have a weekend at the cabin w/ my dad's family planned but will otherwise say close to home for the most part. Neil and I did book a trip to FL in Sept, for our 5 year anniversery (WOW, where did those 5 years go?). Neil is playing softball 2 nights a week, while I have seemed to hang up the old glove for a few years. We are going to try and get to as many games as we can, although the last game we went to, Ava stood at the top of the hill screaming, "I need a nap!"
I am going to try and update all of the pcitures soon, although I am going into working a long stretch this weekend. We aare starting to get busy with the 4th Annual Kylie's Hope golf tourney, in which all of the money raised goes to benefit TS research. We have a great time every year and we have some fabulous raffle prizes this year, so if you can make it August 16th, we would love to have you! Email me if you would like more info.
We were at my sister's softball game tonight, which they won, (go Bulldogs!), so I have to go get the house cleaned up. Please say a few prayers for my Uncle Al, who recently suffered both a stroke and a heart attack and is now back in the hospital after suffering bleeding in his brain. Also, for my brother Andy and his safety in Iraq. He should be home soon!!
Monday, May 12, 2008 6:58 AM CDT
Good morning. It seems like by the time I get a moment to update this site, a week or more has gone by. We are continuing to stay very busy and Kylie continues to do wonderful. She had her first seizure saturday morning in over a week, so I would say as of right now, the vigabatrin is a huge blessing. The vigab will soon be going up against the FDA for approval, so keep your fingers crossed! It would be wonderful to have insurance cover it, so our friends in India would not have to worry about getting it to us, (although we are DEEPLY appreciative!) We LOVE Ky's new social worker, who got Ky approved for a grant that will help w/ her out of pocket medical costs. She is also going to help us get Ky a seizure monitor for Ky's bed, which will also Ky to sleep in her own room. We are beyond excited thinking about it!
Speaking of sleeping arrangements, we are going through an awful bedtime routine around here. Ky wants someone to fall asleep w/ her, Ava wants to sleep on the "couch" and proceeds to get out of bed over and over again. We have been letting both kids fall asleep together in Ky's bed, then moving them later. It works well, aside from Ky getting a bloody nose one night and Ava not knowing how it happened (uhh, right). Usually around 3 am, I roll over to see a little face staring back at me, saying, "Hi Mommy" or "Hi Ria". And then into our bed Ava goes. Hopefully it's all a passing phase. =)
We have been busy working in the yard and Neil finished the girls play area, also known as "A-ba's House". Our dog is trying to figure out how to get up in the house part w/ the kids, so I'm sure it will just be a matter of time. I spent the day on friday w/ Ava, going to some garage sales, doing a little shopping and taking great-grandma out to lunch, while Neil and Ky went to therapy. Saturday was spent stricly working in the yard, as well as work for me. Neil and the girls made me super cute cards for Mother's Day and while Neil worked, the girls and I met my family for brunch and I worked in the evening. Huge thanks to Auntie Kari for spending the day w/ the girls yesterday.
We have a busy week ahead. I am trying to have a garage sale on friday and then the walk is on Saturday. Keep your fingers crossed for good weather! I never got a return phone call last week from the U of MN about Ky's eye exam, so I will try and track that down this week.
If you are planning on going to the walk, please wear your "Kylie's Hope" t-shirt from last year, or the color pink. Let me know if you need directions to Harriet Island and park in the East Parking lot. Registration starts at 8am and the walk begins at 9am. Hope to see you there!
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The walk is nearly here! Thank you to everyone who has sponsered Ky, who has committed to walk w/ us and to those who have volunteered to help. If you would like to sposer Ky, apparently the link above the journal does not work. I will try and post a link below. I am also going to have a garage sale on May 16, the day before the walk, with all proceeds going to benefit the TS Alliance.
Please remember- if you are participating in this year's Step Forward to Cure TSC, the walk has been moved to Harriet Island in St Paul. Registration starts at 8am and the walk begins at 9am. There is also a 5K race that will be going on at the same time. Hope you can make it!!
~Visit Kylie's Hope Walk Page~
Copy and paste the link below. It should work! Still can't figure out how to hyper-link it.
http://ecommunity.tsalliance.org/NETCOMMUNITY/Page.aspx?pid=602&srcid=604&erid=279688&frsid=1178
Saturday, May 3, 2008 9:21 PM CDT
Sunday 937pm~
Double Whoo-hoo!!!! She is using a spoon!!! I don't know what had come over Miss Kylie this weekend put the OT God's are working overtime!! She is eating dinner right now, (don't ask- I know it's WAY past bedtime), drinking out of her straw and spooning herself yougart. I was cheering for her and telling her what a good job she was doing. Ava cuts in, starts clapping, and says "Yeah Abba!! (Ava)". Apparently, she would like us to know she can use her spoon too. Hopefully there will be more good news to report soon!
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Whoo-hoo! Today Kylie hit a milestone that to most people, you would think, "Is she kidding?" But this happens to be on the same level as walking and peeing on the potty in the Gibbons household. Kylie FINALLY learned how to use a straw! We have only been practicing for nearly 3 years and gash darn it, she did it! We were at Keys restraunt and my mom, Ava and I were clapping and cheering- everyone must have thought we were nuts! But you moms of special needs kids know exactly what I'm so excited about!
The girls are having a sleepover w/ "Gee-ma", (as Ava says) and "Poppa", as both Neil and I work early tomorrow morning. My parents brought the girls in to visit me at work today and then stopped by to visit Ky's nurses on 7940. She has not been up there since Sept, so it is nice for them to see her healthy. She has been doing awesome lately and we only saw maybe 2 seizures last week. Now that dance is over, she has been practicing "sashay-ing" around the living room. She loves it. =) Her balance has been much better too. Hopefully we are heading into some good times. I still don't have the eye test back but keep your fingers crossed all looks well, so we can keep her on the vigabatrin and try to continue getting her off the other meds.
We took the girls to see Auntie Kari at her prom/grand March tonight. Ava loved all the pretty dresses and both girls were waving at all the kids. Neil has been busy building the play set, so hopefully he will have it done this week.
That's all for now. Just had to share our good news. =)
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The walk is nearly here! Thank you to everyone who has sponsered Ky, who has committed to walk w/ us and to those who have volunteered to help. If you would like to sposer Ky, apparently the link above the journal does not work. I will try and post a link below. I am also going to have a garage sale on May 16, the day before the walk, with all proceeds going to benefit the TS Alliance.
Please remember- if you are participating in this year's Step Forward to Cure TSC, the walk has been moved to Harriet Island in St Paul. Registration starts at 8am and the walk begins at 9am. There is also a 5K race that will be going on at the same time. Hope you can make it!!
~Visit Kylie's Hope Walk Page~
Copy and paste the link below. It should work! Still can't figure out how to hyper-link it.
http://ecommunity.tsalliance.org/NETCOMMUNITY/Page.aspx?pid=602&srcid=604&erid=279688&frsid=1178
Wednesday, April 30, 2008 7:01 AM CDT
Good morning. Things have been going pretty good around here, (did I say that out loud?) On the seizure front, things have calmed down once again. We have not seen one in quite a few days and as a result, her development seems to have picked up again. Ky wanted me to read w/ her yesterday and she picked out the numbers 8 & 9, which I knew she knew but then pointed to the number 16 and said, "sisteem". She has pretty much stoped grinding her teeth (yea!!) but has been constantly curling her tongue and sticking it out and up. Dr Frost believes it is from the oral motor therapy she is doing and is not a bad thing. Ky's walking has been more sturdy and she has been doing alot more dramatic play at home. She is even attempting to help me dress her in the morning. We just keep plugging away.
We had Ky's IEP meeting on monday, which went pretty well. Our main focus for next year will be her speech, getting her trunk stronger, using a regular cup/straw and potty training. We decided to have her go to pre-k 4 days a week but they are not sure what days or where. The plan is also to try and get her to spend part of her day w/ typically developing kids. She will go to the school's summer program as well, 2 days a week. As for the ERG, I hope to call today and get the results.
We spent the weekend w/ my mom's family, as my uncle got married. It was great to see everyone, especially everyone from out of town. On Monday, Ky had her dance recital. It was so cute and the gals at Kids Abilities did an amazing job. Ky was yelling out, "Sashay!" and "Bow!" as they were doing each action. It was pretty cute. We signed her up for the next dance sessions, as well as a gymnastics class and a social skills class. That will all be done at Kids Abilities, on top of her regular therapy. I also signed both Ky and Ava up for gymnastics this summer, at a parks and rec center. Ky's PCA is allowed to go w/, in case she needs a little help. I should probably try and get them in swimming too but the less I have to get into a swim suit, the better. =) We took the kids to the MN Zoo last week, which they loved. I am debating on renewing my membership. We are also going to try and get to the Children's Museum this week. I work a stretch of days coming up, so we won't be doing too much. My sister's prom is saturday, so I am taking the girls to the grand march. Neil has been busy getting the yard ready for the playset, which he will be building soon, if the weather permits.
Happy belated 30th Wedding Anniversary to my parents yesterday. Congrats!
The walk is nearly here! Thank you to everyone who has sponsered Ky, who has committed to walk w/ us and to those who have volunteered to help. If you would like to sposer Ky, apparently the link above the journal does not work. I will try and post a link below. I am also going to have a garage sale on May 16, the day before the walk, with all proceeds going to benefit the TS Alliance.
Please remember- if you are participating in this year's Step Forward to Cure TSC, the walk has been moved to Harriet Island in St Paul. Registration starts at 8am and the walk begins at 9am. There is also a 5K race that will be going on at the same time. Hope you can make it!!
~Visit Kylie's Hope Walk Page~
Copy and paste the link below. It should work! Still can't fidure out how to hyper-link it.
http://ecommunity.tsalliance.org/NETCOMMUNITY/Page.aspx?pid=602&srcid=604&erid=279688&frsid=1178
Thursday, April 24, 2008 6:41 AM CDT
Good morning. I can't believe how fast the weeks are flying by! We had a great weekend at Auntie Kari's softball tourney. Aside from the girls having massive diarrhea each morning, they were very well behaved and enjoyed being outside and swimming in the pool. They stayed awake the entire ride home, so we put them down for a nap and tackled the yard. Neil is planning on starting to build the play structure for the backyard this weekend.
Kylie has continued to have 1-2 seizures a day since our last decrease in the zonegran. We actually got in to see Dr Frost yesterday and discussed her MRI results, as well as her meds and behaviors. For the MRI, he showed us her giant cell astrocytoma, (or brain tumor). It was apparent that there was something there, pressing on her ventricle. The only time we would really start to worry is if it starts to obstruct her cerebral spinal fluid. She will have a repeat MRI on August 4th. If there is no growth or change, she will have a follow-up MRI in 1 year. If there is change, she would either have a follow-up MRI in 6 months or decide if action would need to be to be taken sooner. Dr Frost feels it will most likely not grow much between now and August, which is good. We discussed the different clinical trials going on right now w/ medication to shrink the tumor, but the side effects don't sound to good. They are the same effects as chemo and for a kiddo w/ an immune system that sucks, I don't know how appropriate it would be for her. He also said they don't know the long term effects of these medications on the developing nervous system. So I guess for now, it's a wait and see game. He wants us to wait until after Memorial Day to continue weaning the zonegran, to see if she remains stable over the next 6 weeks at the dose she is at. He also said he will be out of town the last 2 weeks of May and doesn't want her ending up in the hospital while he is gone. He also said he doesn't want her ending up there while he is here either. =) Typically, early summer seems to be when she does best seizure-wise and development wise, so we are looking forward to the next few months. We got the ok to increase the vigabatrin if we feel it is needed, although they would like us to wait until we get the ERG results back (her eye tests. He said the peripheral vision loss is usually seen early on, so we should know if any damage has been done. I am going to try and call today to see if the results are back.
We got Kylie's results back from her IEP review. She is obviously well behind in her development, although I am pleased to see some of the stuff she is doing at school. Typically, her development falls at 24 montha, with some of her speech skills falling slightly below that and her cognitive skills going up to 36 months. However, she continues to make gains forward, she continues to be a very happy, sweet and delightful little girl, so what more can we ask for? Well, I personally would love to have a full conversation with her, but maybe in time. Her biggest issue at school, as well as at home, tends to be her attention span. Basically, it's short and sweet. When the teachers and therapists can get Ky to sit and pay attention, she does very well and pretty much follows everything they ask her to do. However, those days seem fewer than not, so it is a struggle we continue to work on. Her school team is excelliant, as is her private therapy, so I feel we are doing everything in our power to help her. We are having her IEP meeting next week, where we will go over her eval.
I got a letter in the mail, stating her county social worker has been changed and all I have to say is Thank God. Her previous worker was extremely hard to get ahold of and nver even returned calls from the hospital social worker. I got Ky's assessment from last year, to go over and make changes to. I am so ticked off, as the worker never changed a single thing from Ky's inital assessment, which was right after Ava was born. It talked about Ky's "new baby sister" and the fact she goes to a feeding clinic for her oral aversions, (which was when she was 8 mo old!) This woman never did a thing for us and was a complete waste of our time. She only showed up or called us 1x a year, when she needed to get her paperwork up to date. The new worker sounds very nice and we will be meeting with her next week
We have been enjoying being outside, loving the beautiful weather. It looks like rain today, so we will be busy thinking of in-door things to do. We have my uncle's wedding this weekend and have out-of-town family coming in, so we will be busy most of the weekend. Ky has homecare coming at 8am, so I need to go put lido on her port. She has school at 9, so it will be a busy morning. Have a great day!
Oh- if anyone plans on joining us at the walk as a part of "Kylie's Hope", please email me so I can get a head count (riau2@aol.com). Huge thanks to Grandma Sue, who once again is our fundraising champ! We love you!! If you would like to sponser Kylie, please go to the link above the journal entry.
Friday, April 18, 2008 7:52 AM CDT
Good morning. I thought I'd do a quick update before we head out of town. We are about to venture on a 4 1/2 hour car trip w/ both girls, so please pray for our sanity! My sister is in a softball tournament this weekend, so we thought we would go w/ and make it a mini vacation.
We have been staying extra busy as usual. Our "highlight" of the week was our trip to Target on tuesday night. I never seem to find time to grochery shop but decided to take both girls and just do it. We had nearly completed our trip, with our cart stuffed full w/ food and everything we needed for the weekend. All the sudden, the loud speaker comes on, telling all Target employees to exit through the fire doors. I thought, weird, why would they be having a fir drill? Then came the announcement, "All Target guests musst immediately evacuate the building". Apparently, someone called in a bomb threat. I mean really, who bombs Target? While people were streaming out all around us, I was struggling to get both kids out of that dang double cart. Then, it came time to pry the ice cream cones from Ava's death grip. She starts screaming, "No!!! Ice-ceem! Ice-ceem!" and proceeds to lay on the floor, kicking and screaming, all while people continue to run out around us. I ended up picking her up by her overall straps and literately dragging her out, all while about 300 people stare at us, as we were the last people to leave. Lesson of the day was~ 1. Never bring Ava grochery shopping again and 2. Don't mess with a girl and her ice cream!
On wednesday, we celebrated Grandma Karen's 51st birthday. Happy Birthday mom! Grandpa fed Ky WAY too much chocolate cake, which came out everywhere during her nap yesterday. Thanks Dad. Ava was super crabby and spiked a 102.2 temp but seemed fine yesterday. Hopefully everyone will be healthy this weekend. We have been busy playing outside and enjoying the warm weather and getting our yard ready for spring.
Kylie has been doing pretty good. We decreased her Zonegran (seizure med) again on Monday and we have seen a little increase in seizuzre activity. She has been having a couple quick seizures a day. I am hoping things level out her soon. The last time we weaned off it totally, she ended up in the hospital for a month. But the vigabatrin seems to be working still. Our ped called and said all of the allergy testing came back negative. Although it is great news, we still have no idea why she broke out in huge hives. Oh well. She continues to be a mystery. Our ped also agreed to order labs to be done every other month, as a standing order with homecare. Ky has not been as closely monitored as she should be, so this will hopefully help. We still do not have an appointment to see Dr Frost and to say I am mad is an understatement. We have been waiting nearly 3 weeks for one, after being told we would get in w/in a week or 2 if the ERG test ran too late. Still waiting. Grrrrr.
Ky went to dance on Monday, which was so cute to watch. She seems to be walking better this past week, although much of it is on the side of her foot. She has made it to all of her therapy and school this week, as she has been feeling good. The school team has been working on her end of the year eval, which we should have soon. Ky is so far behind in so many areas but works so hard and is always happy, which if anything, is what I want for her the most. Although, I would love to have a full conversation with her, to see what is going on in that pretty little head. Oh well. We are grateful for what we have. Ok, gotta go get the kiddos (and the big kiddo) up and get going. Have a great weekend!!
Oh- if anyone plans on joining us at the walk as a part of "Kylie's Hope", please email me so I can get a head count (riau2@aol.com). Huge thanks to Grandma Sue, who once again is our fundraising champ! We love you!! If you would like to sponser Kylie, please go to the link above the journal entry.
Monday, April 7, 2008 9:36 PM CDT
**UPDATE Sat April 12 9:53PM**
I am on-call this evening, so we have been doing some much needed spring cleaning. The endocrine dr called me this morning and said basically, all of Ky's tests have came back normal, which is great. Her amino acids were elevated in one metabolic test but after talking w/ a geneticist at Mayo, they think her Keppra med is the culprit. The dr said she has another patient who, like Ky, has a varient of the cystic fibrosis gene and he also has low blood sugar issues. She said there is no documentation that they are connected but it may show a connection w/ the pancreas. We have standing orders to have insulin levels drawn the next time she is in the ER and has a low blood sugar. We need to make a follow-up appointment to see the endocrine dr, where they will draw more blood to check a few other things. But Ky's cortisol level and growth hormone levels are normal, which is great. We just have to continue to monitor her sugars, especially if she doesn't eat much or plays hard. As for Ky's leg, she is walking but is walking on the side of her foot. We'll give it a few more days and check in w/ her ped next week. I am hoping it is not a neurological issue, just a slight injury.
Miss Ava fell down the basement steps today. She was helping me do laundry and I ran upstairs to answer the phone. She usually does just fine on the steps but I heard a big crash and she was laying at the bottom of the steps. Poor baby. She told me, "Hurt head- crying- went boom!" She seems ok though.
Have a good Sunday!
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UPDATE Thurs April 10th, 1000pm
Just a qucik update before the weekend~
Ky was pretty crabby monday night and it seemed like her foot hurt. She woke up at 3am tues and stayed up the rest of the night. She would not put any weight on her left leg all day tues and was crying out in pain. She even said, "Help me!" We brought her in to urgent care for xrays and the dr thought she could've possibly fractured her femur. During the x-rays, she kept looking up at the machine and said, "Cheese!" She was awesome through the whole thing. All of her xrays were fine, so we left w/o really knowing what was wrong. She is walking on it today, although w/ a huge limp and she still does not want to stand in one spot. We'll give her the weekend and if it still seems to be bothering her, we'll go back to the dr monday. We still do not have any results from any of her testing back, so I'll probably start making some calls next week.
I met w/ Ky's pre-k teacher this week and we went over the plans for the summer/fall. She is going to attend the summer school pregram in June, since her seizure in Sept hurt her gross motor skills and there is always the chance it could happen again. For fall, her teacher is going to try and get her in a class where she would spend half her time w/ the special ed kids and half the time w/ "typical" kids. This would be huge for her, since she tends to copy other kids and learns so much from them. I remember when I was pregnant w/ Ava and the therapists at Gillette said what a wonderful gift the baby would be to Kylie, how much she would learn from her. At first, I was mad and totally offended. Kylie was the big sister and the baby would learn from her! How right those therapits were~ Ava is like 24 hr therapy for Ky. Ava includes Ky in everything, is always watching out for her and teaches her new things every day, even if those things include flushing things down the toilet!
Ava has been in a foul mood all week and I am hoping it is just the weather. We don't have anything planned for the weekend aside from working, which is ok, since the weather seems to be looking pretty awful. Hope everyone stays warm!
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Good evening. Kylie had her first dance class tonight and I think it went pretty well. She is in it w/ her friends Mary & Lydia, both of who go to the same therapy center as Ky. Today they practiced "Sashay-ing", (not sure how to spell that one!) Here are the girls before class~
Ky was wiped when we got home though. She was super crabby and alseep before med time, which is not like her. Ava was a piece of work all day, so she went down early too. I have been enjoying the peace. =)
I did not feel better until Sunday morning, so I have been trying to play catch-up the past 2 days. We did get together Saturday night with a few TS families, which is always a good time. Aside from that, we pretty much just laid around this weekend. We did go buy a huge play structure for the back yard but we won't be able to put it up until the weather gets a little better. I signed both Ava & Ky up for gymnastics this summer, which should be fun. I can't wait to see how Ava looks in the outfit!
Ky is doing pretty good health-wise. We will decrease her zonegran again next week. We were worried about her speech, as she barely said anything aside from "Mommy" & "Elmo" for the past week. Thankfully, she has been talking a ton the past 2 days. Maybe she knew I was sick and was just trying to be quiet. =) We still don't have an appointment with Dr Frost, so hopefully we will hear something soon. She is grinding her teeth SUPER bad, so I am hoping he can give us some tips on how to stop it. It is driving us crazy. Seizure-wise, she is having a couple a week, which are super mild and hard to catch. We are definately enjoying the break!
Not much else new to report, which is always a good thing! Keep May 17th in mind if you would like to join "Kylie's Hope" for our annual walk / 5K Run, or if you would like to sponser her. The link is posted above the journal entry. And as always, thank you for your thoughts and prayers and for checking in on us!
**Since I have been bad at updating pictures, I added a few below so you can see what we have been up to!
Ky riding the bike at therapy
Happy St Patty's Day!
Ava and "BC Bear", her gift from Uncle Andy (Ky is still warming up to "Jo-Jo Bear"- Ava named them both)
Ava- trying to grow up too fast!
Neil dying the Easter egss, while the girls watch
Ky finally getting her hands on one
Happy Easter!
Ava playing w/ snow in the sand table, in the kitchen
Sunshine Girl
The cute rear shot
Ky's first Wild game
All of us
Time to leave!
Ky, while getting her blood drawn- no tears here!
Snuggled with all her pals
Tuesday, April 1, 2008 12:18 AM CDT
UPDATE Thurs 1038PM~
A few hours after my last post, I was hit with the flu pretty hard. I have felt like crap all week and still am not feeling great. Neil ended up taking Kylie to her eye appt, which was hard, as I have never not been with her when she was getting sedated. But since I felt so crummy, I just could not go. We won't have her results back for a few weeks. Neil said she did good, just that her throat was irritated from the breathing tube. Aside from that, all I know is we have to roatate seeing this dr every 6 mo w/ our regular eye dr, Dr Ballard. This dr also confirmed Ky is farsighted, which we knew. (Can you tell I don't even know the new dr's name? Details, I tell you.) We missed our appt w/ Dr Frost, which will hopefully be rescheduled soon. Ava spiked a 103.6 fever tonight, so I am sure we are headed into another fun weekend of sickness. More later..................................
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Good evening. Kylie and I just walked in the door a bit ago, after a long trip home from Fargo. We went up for Caroline's memorial service, but had to get back tonight so we can be to the U of MN at 7am. Back tracking a few days~
Ky had her endocrine work up on thursday. We won't have any results for a few weeks though. They injected her w/ a hormone and drew blood every 15 minutes. She did great and was full of smiles. She had a full day of therapy on friday and I worked. She had music class on saturday morning, which she loved. Since Auntie Kari is in Key West this weekend, we did not have a sitter on Sunday. We headed up to Fargo early and spent a few days with the Beechers. Ky was pretty quiet all weekend, had a few low blood sugars but overall was a wonderful traveler. She enjoyed all of her snuggles. Caroline's service was beautiful, yet hard. Ky has lost nearly all of her friends from 7940 now and it breaks my heart to think about it.
Anyway, we arrived home safe tonight. Shannon was worried I was going to kill her the entire way, but we made it. We have an early morning and a long day ahead of us. Ky will be sedated for her ERG test, which checks for any peripheral vision loss, from the vigabatrin. We have to see the eye dr after the test and then off to Dr Frost's at 3pm, to go over her MRI. We will be cutting it close, so we may need to reschedule her appt with Dr Frost. We'll swing by my brother's house afterwards, as he is heading back to Iraq on Wednesday. We are going to get together with friends on wed and have a busy weekend ahead of us, full of birthday parties, get togethers and a benefit. Ky will start dance next week too. Hopefully, once summer rolls around, we are going to slow down a bit and just be. I am getting tired of being constantly on the go. We are going to build a play structure in the back yard for the kids, do a little gardening, (well, I say that every year and usually last 2 hours of pulling weeds and then I'm done!) and just enjoy being home. It's hard to believe April is already here and it looks like January outside!
Ky continues to do well with her seizures, maybe a few a week. Grandma took Ava to urgent care this weekend, as she has an eye/ear infection. I am hoping it will pass Ky by. Ok, off to bed~
Goodnight Sweet C. We will forever miss you!
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If anyone would like to sponser Kylie for this years TS Walk/5K run, or join us that day as a part of "Kylie's Hope", please go to the link directly above the journal entry. You will have to cut and paste, as my computer skills are not quite up to par!
Wednesday, March 26, 2008 2:18 PM CDT
Hi all. It is finally starting to look like spring! Although, we are due for more snow tomorrow, so we'll enjoy today while we have it. =) We have continued to stay extremely busy. Neil and I both had friday day off, so despite the icky weather, we took the girls to the mall to see the Easter bunny. Ava was hyped to see "Bunny Hop-Hop" and actually sat on his lap and gave him a hug. We had Ky in the stroller and she kept saying, "Up please!", so we took her up to the Bunny and she immediately buried her face in Neil's shoulder. Maybe next year. We hung out at home for most of the weekend. We had the great cake baking day, which Neil really looked like he was going to drop dead from. I later asked him to dye Easter eggs w/ the girls and when I went to check on them, the girls were watching him dye all the eggs. His excuse? He didn't want them to get dirty. I can't wait for mud puddles! Neil worked on Easter, so my sister and I took met my family at church. As predicted, we spent a good chunk of the mass entertaining busy toddlers. I missed the most of what the priest was saying, as I spent most of my time trying to prevent Ky from chucking books at the lady in front of us, as well as trying to keep her from pinching the lady's butt. Ava was singing at the top of her lungs, mainly when everyone else was quiet and trying to escape from the pews. It was a prime example as to why my sister calls us the "CEOs" (Christmas & Easter Onlys). We went back to my parents for bunch and then visited my sister-in-law at the hospital. We spent the visit trying to keep the girls from yanking Andera's NG tube. We went home for naps, woke up at 630pm and discovered we had nothing for dinner. We went out to eat and then everyone was awake until 1130pm. I took Ky to therapy on Monday, where she went on the potty again for them. Yea! At home, things have been a little more infrequent, especially after the "Great Pooping Escapade" yesterday, which we will not put into words. It is something I don't think Laura will ever forget! Ava has been doing great going on the potty. She has even been telling us she has to go and staying dry a lot. We may venture into big girl underwear soon. Yea for mom!
Yesterday Kylie's school called and said she was acting funny, although not like it was a seizure. Since they can not check her blood sugar there, I had to go check it. By the time I got there, she had eaten a big snack and her sugar was fine, so I am not sure what was going on. She was acting fine by then too. We have Ky's endocrine work up tomorrow, so hopefully the pieces will start coming together soon. All of the drug allergy testing is still pending and all of the food alleries were negative. She has not had any more hives, so I am assuming she is allergic to the zithromax. Ky has her big eye appt at the U of MN next tuesday, which will check for the peripheral vision loss, assocaiated w/ her vigabatrin. Please pray that everything looks ok, since the vigabatrin actually seems to be working! But shhhhhh, I didn't say that. Ky had 1 seizure on monday and one seizure last tuesday. Aside from that, we haven't seen any. She has been happy, healthy (well, Kylie-healthy) and doing great. We bump the zonegran dose down again on monday, so we will see what happens. The horseback riding place called the other day and said they are now full, so we lost our spot. I'm not quite sure why, especially after they sent us a letter saying we were in, so who knows. Ky is going to do dance w/ her friend Mary now instead, which is closer and should be great fun.
We went to Bucas for dinner last night, to celebrate Auntie "Kurie"'s 18th birthday. The girls loved the food! Tonight, Neil and I are taking the girls to their very first Wild game. They both are seriously into hockey, so hopefully they will enjoy it. I doubt they will make it through the entire game but we'll see what happens. Neil's buddy is going to try and get them on the big screen, so if you are watching, look for 2 little hockey fans!
I will most likely be making a trip up to ND soon, as our friend Caroline will soon be earning her angel wings. We met Caroline and her family on 7940, at the very beginning of Ky's journey. The girls spent multiple hospitaliations together and at one point, we spent nearly a month there with them. Since then, her mom has become a dear friend and we are asking for prayers of comfort for all of them.
I finished my TS Walk mailing yesterday, which was a huge relief. We posted the link above to Ky's page and we would love to see anyone that can make it there! I'll repost the cake pictures below for anyone who missed them. I have a ton of new pics to add, which I will hopefully do in the next few days. Have a wonderful week!
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**** See above link to join Kylie's Hope or to make an on-line donation ****
Baking with the Gibbons Girls~
Things start off smoothly....................
Until Kylie decides to join in...................
This is fun!
Ava decides to dig in.....................
And they are off to the races!
Cake is so yummy!
Buster decides to join in..................
And he sneaks a taste!
What happened to our pretty cake?
What a fun day!
And then Neil had a heart attack from the mess!
Monday, March 24, 2008 7:52 AM CDT
**** See above link to join Kylie's Hope or to make an on-line donation ****
Baking with the Gibbons Girls~
Things start off smoothly....................
Until Kylie decides to join in...................
This is fun!
Ava decides to dig in.....................
And they are off to the races!
Cake is so yummy!
Buster decides to join in..................
And he sneaks a taste!
What happened to our pretty cake?
What a fun day!
And then Neil had a heart attack from the mess!
Wednesday, March 19, 2008 11:50 PM CDT
Good evening. I can't believe over a week has gone by since I last updated. Neil and I are watching "I am Legand" and I need to take a break for the scary parents!
Kylie is finally doing better, although she still has a cough. She has been back at therapy all week and had a super day at school on tuesday. She made a new friend and they had a good time playing together. Her teacher said Ky was very talkative in class, even though I had to pry her off my leg when I dropped her off. She has been doing great at therapy and even went on the potty for one therapist. She has been going off and on at home, which we continue to work at. Ava has been giving us a flat out "No" when we try and get her to go. If I ever get a few free days, we'll give it another go.
Ky had a bunch of allergy testing done on friday, most of which came back negative. There were a few send outs to Mayo, which will take awhile to get back. Her hives are, so far, a mystery. Ky has her endocrine work up next week, which will hopefully lead us to an answer to her blood sugars. They have been ok lately, so maybe they are just low when she is sick. Who knows.
We have been so busy lately, I don't even know where to start. My brother came home last week and we have been spending a little time w/ him while he is home. I have been working quite a bit and Neil has been putting in some long hours. I had the pleasure of spending the weekend w/ my favorite ladies, which is always a good time. Our new sitter started tonight, which gave me a chance to do a little spring cleaning. I have been feeling a little run down lately and hoping it won't turn into anything. Maybe my 4 hr average of sleep a night is finally starting to catch up w/ me. =) Ky has been waking up in the middle of the night off and on the past few nights, which isn't helping.
We signed Ky up for horseback riding this spring, which will hopefully help w/ her trunk strength. If we can fit it in, she will also do dance. It seems like she has a crazy schedule (she does) but we are hoping all of our early intervention will help her out in the long run.
We don't really have plans for Easter. Neil works, so I will probably head to church with my family. If anyone attends the 1030 mass at Maternity of Mary, look for us in our favorite spot~ in the back of church, since 2 little girls and a long service are not a good match! Hopefully Ava will not be the one running up the aisle to see the priest again, (her last move at church).
The favorites at our house lately have been puddle walks, playing "Pretty, Pretty Princess", Girl Scout Cookies, pomegranete applesauce, listening to Ava sing run-together nursery rhymes, watching hockey w/ dad, baking w/ Auntie Kari, bubble baths and watching both girls "shake their booties".
We are keeping our fingers crossed that the weather will cotinue to warm up and that spring will be here soon!
Monday, March 10, 2008 11:30 AM CDT
Tues March 11~
Kylie continues to be sick, although her fever is gone. She had another episode of breaking out in hives yesterday and a few more today. I spoke w/ her ped again today and she wants her allergy testing to be done this week, so homecare will come out on friday to draw labs. We did send Ky to speech this morning, which was probably a mistake, as she was not into it at all. Not sure if it is because she is still not feeling well or because she missed a week of therapy. Aside from a nasty nose, she has been pretty happy all day. We ventured out tonight, as Ava is part of a child development study at the U of MN. She does various studies throughout the year and the one we most recently committed to will be for a year. They were tested her language development, or understanding of language. They would show her 4 pictures and she would have to pick out whatever they were telling her, whether it be something as simple as a circle to something more complex as someone doing an action, such as raking. The little smarty pants got up to the 5 year old level before she fell apart and had a tantrum. She was 1 question away from the 6 year old comprehention level. So I am guessing a lot of her sassiness is coming from being able to understand way more than she can say! Speaking of Miss Ava, she made an appearance in the new National TS Infantile Spasm Video. There is a picture of her in it taken when she was ablut 5 months old. Since she doesn't have TS, nor infantile spasms, it's a bit of a mystery how it got there. Anyway, it is a VERY moving video, showing kids having spasms and the damage they can cause. Kylie did not have spasms but 50 f kids w/ TS do. Here is a little info on the video, as well as a link. I highly recommend watching it but be sure to grab a box of kleenx. It shows why we are fighting so hard to find a cure for this disease. Ava's clip is at the timemark 8:03. I'll try and get our walk page posted soon! Great news too!! My brother will be home from Iraq in the morning and my cousin flies in a half hour after him! My cousin in home for the time being and my brother flies back in 2 weeks. Thanking God tonight he is bringing these boys home safe. Please keep Caroline in your prayers tonight, as she is preparing to join our angel friends. Here is the link to the video. You'll have to copy and paste, since I never figured the link thing out, (could you sned it to me again Kim?)
http://tsalliance.easycgi.com/video files/Infantile Spasms.wmv or YouTube version here http://www.youtube.com/watch?v=28ihqGfrB-Y
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Counting the days until spring! Kylie is STILL sick, so we went into the clinic this morning. She finally did not have a fever this morning or most of yesterday but did spike a temp in the middle of the night. She also was coughing so much all night long, she threw up in her sleep. We can't give her cough medicine, as we were told it can interfere w/ her seizure meds. She had been doing pretty good w/ her seizure control, then had about 12 on friday. We only saw a handful each day over the weekend. We had a little scare last night, when Kylie broke out in huge hives. They almost complete covered her legs and butt and there were some on her belly and arms too. We had to stop her antibiotic and she will be starting a new one today, especially since her sinuses have not cleared up at all. Her left ear also had blood in it and it looks like her tube isn't working anymore. It should be falling out soon but she will be on ear drops for awhile. Next week, she is getting her port flushed and will have a slew of labs drawn to check for allergies. Ky did have shrimo for lunch yesterday, so we don't know if the hives were from the shrimp or the med.
On saturday, we finally spent some family time together. I think it had been months since we have all been together for the day. Although, it ended up w/ Ky spending a few hours w/ Gma Sue, while Neil and I took Ava to buy a new stove and out to lunch. She was realishing in her "alone" time w/ mom and dad. She enjoyed her lunch of marinara sauce, which she ate w/ a fork. We spent the evening cleaning and hangning out. Yesterday, I interviewed a sitter and Auntie Kari and I took the girls to MOA. We went to Underwater World to see the "fishies" and to Rainforest for lunch. We bought the girls their Easter dresses and picked some new books. We got Ava the book, "Teeth Are Not For Biting". About 5 minutes after reading it to her, she bit me in the arm. Guess I'll have to check into getting a refund!
Ky has missed therapy for the past week, so I am hoping she will start feeling better soon so we can get back on track. She is on spring break this week, so no pre-k but has PT, OT Speech, Conductive Ed and Music on saturday. We are signing her up for horseback riding this spring, so she will be extra busy. I am looking forward to the weekend, as am I getting to spend some time w/ my 7940 moms. We are going to listen to a speaker on Saurday, from a woman who lost her 3 teenage daughters in a car accident, 2 days before her son's wedding. Stories like this tend to put things in perspective. I am super busy getting ready for the TS Walk, which will be in May 17th. If anyone would like to join Kylie's team, we would love to have you! Or, if you would like to sponser Kylie, we would love that too! All proceeds go to funding education and research for TS, so hopefully one day, another parent won't have to live through the daily hell we do. I'll try and post a link later to our walk page, as well as some exciting new information about working towards a cure!
Tuesday, March 4, 2008 10:19 PM CST
UPDATE Friday March 7 645am~
Ky is still sick and has been running a fever since last friday, anywhere between 100-103. Her cough is horrible and she threw up during the night from coughing, (down my shirt, none the less!) Her junky nose is out of control and her seizures picked up yesterday. Our ped called in an antibiotic yesterday to treat what we think is a sinus infection but if she isn't doing better by tomorrow am, we'll bring her back in. I am finally off this weekend, so we have some fun things planned. I am crossing my fingers we get to do them!
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Ky has another fever tonight and her nose is pretty junky, so we are assuming she has another sinus infection. Ava caught pink eye this weekend, which Kylie has so far avoided. I spoke w/ Dr Frost's nurse today and we are going to continue decreasing the zonegran and will probably increase the vigabatrin again. Ky is maybe having 2 seizure free days a week and about 1-5 the other days. We still have room to go up quite a bit on the vigab. She enjoyed her first music class this past weekend, along side her good pal Mary. I think she was mosre excited to see Mary than anything! I worked all weekend, so I will be spending a good chunk of the week de-programming the girls from watching hockey, their favorite past time w/ daddy. =)
Ava continues to keep us on our toes. She is a crafty little devil and has been getting into everything. Yesterday included emptying the entire bottle of floor cleaner into the dog dish, all over herself and into her dad's favorite baseball hat. Today, she put a CD of 2006 pictures of Ky into the paper shredder, while it was on, ruining both the shredder and the cd. She almost got disowned for that one! She has been sassy as all heck and she is keeping us entertained w all of the new things she says each day. She kept telling me today that she was naughty and did "no-nos".
Can't wait for spring!!
Saturday, March 1, 2008 0:19 AM CST
Kylie woke up with a fever this morning, so we cancelled all of her therapy. She has 3 hours of therapy on fridays, so I really hate when she has to miss it. We did make the endocrine appointment today, which even being a nurse, most of it went way over my head. Basically, Kylie should not be having these low blood sugars. The dr wasn't sure about the high blood sugar but seemed most concerned w/ the low ones. There are many different things the dr wants to rule out, including a tumor on Ky's pituatary gland, multiple metabolic disorders and problems w/ her growth or cortisol hormones. Since Ky has multiple issues aside from the TS diagnosis, maybe whatever we find could help put the pieces together. The dr does not think she will find a growth hormone problem, as Ky continues to stay on the growth charts. She had always been in the 98th percentile for height and close to off the charts in weight. Over the past year or so, she has slowed way down and is currently in the 50th percentile for height and weight. Neil is no longer worried his girls are going to be taller than him. =) As for the pituatary glad, the dr is going to contact the radiologist who read Ky's MRI and have him look at the pituatary gland specifically. If she has something wrong w/ it, her brain may not be sending the pancreas the signal to release insulin at the appropriate times. And we also can't rule out the fact that maybe having so many brain tumors is just disrupting the brain signals on their own. Anyways, we have to go back to the clinic on March 27th and have a cortisol resistance test done. I have to wake up at 4am and put a little urine bag on Ky, to collect a sample for another test they are doing. Ky can have breakfast that morning but nothing to drink. We have to be at the clinic at 830am, when they will inject something into Ky's port and check levels at 30 min and 60 min, (I started losing her at this point). Then, we are going to get a letter w/ standing orders for a insulin study of some sort to be done. So the next time we end up in the ER w/ a low blood sugar, this test can be done so we get accurate results. We also got a quick lesson on a glucogon (sp?) "gun" to use for low blood suagrs. It's basically an injection we mix and draw up and inject into Ky's muscle, if her sugar gets low and she is sick or won't eat anything. Pretty soon we are going to have to get a rolling suitcase to take with us for all of Ky's meds/medical supplies. The little backpack just isn't cutting it anymore! When we met the dr this afternoon, She asked Kylie if she was having a good day. Ky glared at her and said, "NO!" It was pretty cute.
I found out a little more about Ky's eye test. It included sedating her and putting a contact in her eye, which is connected to an electrode. I don't know why that freaks me out- must have to do w/ my crazy and irrational fear of eyes. I have my license marked saying I'm an organ donor but I must be buried w/ my eyes. Like I will really need them but I freak at the thought of someone touching them. I'll probably never make it to lasix eye surgery either. Anyways, our appointment will be from 7am-430pm. Yuck.
We are busy working all weekend. Sunday I am interviewing a new babysitter and we are going to watch Auntie Kari in her school's fashion show. Neil and I both work, so the girls will be shuttled between Gmas Karen and Sue. I picked up a bunch of extra shifts over the next couple weeks, so it is going to be hectic. My brother is coming home from Iraq in a few weeks, while his wife has surgery. He will only be home for 2 weeks but we can't wait to see him! Kylie starts music therapy in the morning, so I should probably get to bed. Ky has learned a few new letters and colors this week and Ava now sings, "A,B,C,D,E,F,Hockey". Too much friday night hockey w/ dad. Enjoy the warm weather this weekend!
Monday, February 25, 2008 1:47 PM CST
We survived our busy weekend. The girls had a good sleepover w/ their buddy Cam on saturday night, while Neil and I went to a benefit. I was so tired from staying up most of the night, working on our taxes, that I was in bed by 11 pm. So much for date night! I picked the girls up sunday morning and we headed off to a baptism. They were relatively well behaved, until I wouldn't let Ava have cake. Major tantrum, so we headed home for naps. We had a girl party last night w/ the Aunties, watching the Oscars.
Ava's rash ended up being a yeast infection, while Ky's lungs checked out ok. She didn't wheeze in the clinic, but has continued to do so off and on through the weekend. Seizures have been 2-4 a day but don't seem to really be affecting her.
We have a full week of school and therapy. Ky sees the endocrine dr on friday, so hopefully we will get some answers to her blood sugars. We haven't seen any low ones since last week.
The weather is starting to warm up a little, so hopefully we can get the girls outside a little more soon. We are planning on re-vamping the backyard this spring and adding a play structure. We are hoping to tone up Ky's legs and tone down Ava's. =)
We have our appt for Ky's eye exam, which will be April 1st. We have to be there at 7am and expect to spend at least 6hrs there. We are supposed to see Dr Frost that day at 3pm, so I need to find out if we will be able to keep the appt.
Ky's appetite has picked over the past few days, as she was down 2 pounds since her last dr appt. We hit a milestone as well, as Ava passes up Ky in weight. They are now weighing in at 30 and 31 lbs, respectively. They are, for the most part, wearing much of the same size in clothing too, so shopping has become much easier.
Thanks for checking in! Have a great day!! =)
Wednesday, February 20, 2008 6:29 PM CST
UPDATE Thurs Feb 21 930pm~
Our eye appt went well today, (if you don't count Ky knocking over the eyeglasses display, Ava breaking out in hives after getting her eyes dilated, and Ky laying in the middle of the parking lot, having a tantrum!) Anyway, Ky does not need glasses at this time and thinks her muscle issue is pretty minimal now. She does need to see a eye dr at the U of MN, where she will have an eye exam and then be sedated for a test called an ERG, )or something similar). I don't know anything about it, aside from it checks for peripheral vision blindess. According to my "inside sources", we will be there at least 6 hours. For the love, I tell you. Ky is also still pretty farsighted but it will hopefully correct itself over time. Ava has perfect vision and from how her eyes looked, he doesn't think she will have any vision issues anytime in the near future. She can wait until kindergarden to have her eyes rechecked.
Ky's lungs sound junky and she just can't seem to shake this cold she has. We may bring her back in tomorrow. Ava has spots all over her tummy, which we are hoping is an extensive diaper rash but will have her seen tomorrow too. We have a busy weekend, so we can have any sickos. have a good night.
***Almost forgot~ we have an appointment to see the endocrine dr next friday. As for the seizures, we were happy to report she did not have a single seizure from the time she was in the ER last tues until she had one during her nap yesterday and has had 3 today. Game-on against the seizure monster.
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We got Ky's MRI results back tonight. Carol called around 530pm, giving us some unexpected results. First, her kidneys are totally clear. Yeah!!! Most kids who have kidney involvement will have the tumors show up by Ky's age. So, we don't have to repeat the kidney MRI until Ky is in kindergarden. Ky's liver and pancreas are also clear. So, we will have to look to other reasons why Ky is having issues with her blood sugars. Carol doesn't think it should be med related but who knows. As for Ky's brain, this is where we got some unexpected results. True to Ky's "rareness", she has developed a TS complication that happens in 15f TS patients and is rarely seen in young children, (per the TS Alliance website). She has developed a "prominent" sized giant cell astrocytoma, (SEGA) on her left formen of Monroe (sp?). This is a type of tumor that can grow, although usually slowly, and in rare cases, can turn into cancer. To picture this is your mind, picture a butterfly. In between the top and bottom wings of the butterfly, on the left side, is the tumor. It is located on a ventricle. Carol said if it starts to grow fast, we would notice signs of increased intercrainial pressure, such as morning projectile vomitting and sleepiness. Perfect- just like 50 f the mornings she already has! She also has a few other small segas. Her last MRI in Feb of 06 did not show any segas, so it has developed and grown over the past 2 years. If it gets too large and starts to cause problems, she would need surgery to have it removed. A newer treatment that has been made known lately for SEGAs is a drug called Rapamyocin. In studies, it has shrunk the SEGAs but as soon as you come off the med, the tumor grows back. Plus, it has some nasty side effects. Ky has to have a repeat MRI in August and depending on what it shows, we will know what direction to move in. We are hoping there will be no change and we can just continue to do follow-up MRIs. Just another day in the life of This Sucks disease.
Tuesday, February 19, 2008 7:04 AM CST
After an exhausting weekend, things started bright and early this morning. I ended up working 2 double overnight shifts on friday and sunday and slept most of saturday. My mom took Ky to Urgent Care on sunday and after much debate, the doctor of Ky's friend, Mary, decided she would do the H&P, as she has a few patients that have TS. Thank you Dr S! Neil and Ky met me in Children's lobby yesterday morning and Ky got her MRI. Nothing really out of the ordinary. They were checking her brain for any tumor growth on her ventricle and for any damage from the big seizure she had in Sept. They checked her kidneys for any tumor growth, (she didn't have any tumors on previous ultrasounds), checked her pancreas for tumors or issues that could be making her have problems w/ blood sugars and checked her liver for any tumors or damage from the meds. Hopefully everything will turn up clean but we wouldn't be suprised if things don't. Just the nature of her disease, I guess.
Ky is off school today, so she is going to spend the day at Grandma's, after speech this morning. Then it will be off to Auntie's basketball game. Ava has ECFE tonight. Both girls see the eye doctor on thurs. The first visit for Ava and Ky's check-up from being on the Vigabatrin. Dr B will also decide if it will be time for glasses for Ky, as he thinks she has a week muscle in her left eye. I am crossing my fingers for no, as I would be one more thing for me to try and keep track of. I still have to make an appt for her to see the endocrine dr.
The girls are having a sleepover with their buddy Cam on saturday, while Neil and I are getting our taxes done and going to St Bernards silent aunction. We have baby Nattie's baptism on sunday, so it should be a busy and fun weekend.
Ava woke up at 3am, so it has been a ling night. She just took a spill, so that's all for now!
Sunday, February 17, 2008 8:12 AM CST
Good morning. I am mildly freaking out this morning, as Kylie's MRI is tomorrow morning and i realized I have the pre-op paper work for Ava instead of Kylie! I had asked to get Ava's lab results while we in the clinic and they printed a pre-op H&P for her and I didn't get Ky's. Soooo, I have to do some scrambling this morning or Ky won't be able to have her scans tomorrow. Wish me luck!
Our visit w/ Dr D went pretty good. She agreed Ky should not be having low blood sugars, so she referred us to an Endocrine doctor. I'll have to call and set up an appointment this week. She said they would probably do some sort of insulin study on Ky. Seizure wise, things are going very well and that's all I'll say about that! Ky still has a junky cough, the same one half of MN seems to have. Her lungs are clear, so she was cleared for the MRI. Our biggest issue with Ky lately has been her refusal to swallow her meds. It is taking us FOREVER to get the meds down. Hopefully this new spurt of independance will be short lived, as it is driving us nuts!
I have spent most of the weekend working and sleeping, while the girls hung out with dad and Grandma. Friday night Ava went with Neil to watch her cousin play hockey, while Ky went w/ Grandma and Grandpa to Auntie Kari's basketball game. Ky had a sleepover w/ Grandma, while I worked a double shift. We all met up in the morning for breakfast.
Not much is planned for today. Neil's working, Ky's hanging out w/ Auntie Kari and I am cleaning. We may have to make a trip to urgent care for an H&P and I have to work this evening. Have a good day!
Monday, February 11, 2008 10:54 PM CST
UPDATE Thurs Feb 14th 1115am~
Our Valentine's Day is starting out as good as it usually does during the past 3 years. Ky woke up and was kind of out of it, wouldn't talk and seemed super tired. It took 3 hours to get her am meds in, she threw up during the process and her blood sugar this morning was 44. I gave her some glucose and it only came up to 48. After alot more, (and her telling me "NO!!!"), it finally came up to 106. She fell asleep and has been out for the last hour. Interestingly enough, we haven't seen a seizure yet today. She has her pre-op physical this afternoon, which she will probably fail, since she is coughing up green/yellow junk. Hope your Valentine's Day is a little better than ours!
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Update Wed 1230pm~
Our ped ended up sedning us tothe ER last night. Ky was continuing to run a temp, so they changed her abx. Before even takingher first dose, she started throwing up and her seizures started to increase. You can imagine how well that went. After about the 2oth time she threw up and not keeping the anti-nausea med or her seizure meds down, we brought her in. She got some IV fluids, her Keppra IV and an IV antibiotic. Her labs looked ok. She had alot of seizures while we were there and they wanted to load her w/ phosphenytion (sp?) to stop her seizures, which would've required being admitted. I declined, figuring we could load her at home if needed. We got gome at about 5am, after being there roughly 6 hours. Ky is still awake and going strong. Her seizures have slowed down and she seems to be feeling better. Thanks to Grandma for going w/ us. Naps are definately needed today!
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** New pictures under "view photos" **
Good evening. Ky has been under the weather and feels pretty icky tonight. She has been running a temp of 101-103 all day and was just laying around tonight. She woke up fine and went to therapy but around lunch time, started up with a fever. She was at the peds office on saturday and Dr D said she has a sinus infection. She started on zithromax but if she is still sick tomorrow, they are going to switch her antibiotic. Her cough is pretty junky but her nose seems better. We need her well soon so she can be sedated for her MRIs next Monday. As for the seizures, she has done really well the past few days, maybe 1 a day. Aside from being sick, she seems happier in general. She has gone on the potty a few more times and with Ava's encouragement, gets really excited when she goes. Ky has her pre-op physical on thursday, so hopefully she checks out ok for next week.
Our big news of the week is that our baby, Miss Ava, is now sleeping in a big girl bed. Since turning 2 last week, she has given up her pacifier, (under GREAT protest, even though she only used it at naps and at night), gave up her afternoon naps, became afraid of the dark and started speaking in some sentences we can actually understand. Her tantrums seem a little less intense and her and Ky have been having a great time really playing together, as opposed to playing side by side. We need to watch what we say around her, as I have found I mucst spend too much time scolding the dogs. Ava gets right in their face, yelling "No! No barking! at the top of her lungs.
I have felt like crap the past few days and I think Neil is getting it now. Hopefully we will all be feeling better soon and that it will bypass Ava. We are praying the seizure monster skips us this Valentine's Day. If things continue the way they have been, we may just slid past him this year. Keep your fingers crossed! Thank you for continuing to check in on us and for your thoughts and prayer!
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As most of you know, Kylie lost one of her best girlies this past June. Jess Marie Beecher was only 3 years old and passed away from complications she had from a prolonged seizure. The Beechers are wonderful friends of ours and are doing the most amazing thing in Jess's memory.
Jason, Jess's dad, is a photographer and plans on spending the summer of 2009 visiting national parks across the country. He will be photographing his journey and selling the prints to raise money for the MN Epilepsy Foundation and for the TS Alliance. He has the above website set up to explain his journey, as well as an online store to order merchandise. People can also sponser his trip. Kylie and Jess spent all but 1 or 2 admissions together on 7940. It seemed when one started having seizures and got admitted, the other wasn't far behind. Their family means the world to ours. The month before Jess died, the drove all the way from Fargo, ND to St Paul, to participate in the TS Walk and support Ky. This was an 8 hr round trip for them, yet they did it, all because they love our girl. Now, they are continuing to show love for our girl, by helping raise money for her horrendous disease.
Jess lives on in the beating heart of a baby girl and in the kidneys of a grandmother. Amidst their grief, the Beechers were thinking of others and donated Jess's organs. Now, I ask you to help them honor the memory of a beautiful 3 year old girl. Again, visit www.journeyforjess.com.
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Step Forward to Cure TSC~ Saturday May 17th on Harriet Island, in St Paul, MN
Thursday, February 7, 2008 8:04 PM CST
Good evening. We had Kylie's IEP meeting at school this morning and things went pretty well- nothing I didn't expect. I feel so comfortable with her at school and she has a great team working with her. They are going to do an informal eval (the HELP eval) and will watch her at school as well as at home. Our input on what she can and can not do will go along w/ it. She is pretty behind in a lot of areas but age appropriate or close to it in some areas too. It's just a matter of getting her to focus long enough to show everyone her skills. She has starting identifying shapes and colors at home but is pretty quiet at school. I would love to be a fly on the wall and see how she does.
On the seizure front, things have not drastically changed. We increased the vigabatrin on monday but continue to see seizures. Yesterday she probably had close to 20 but not nearly that many today. Her last dose of transene was on sunday night, so if things are going to get better, they should start to improve soon. If not, I do not think the vigabatrin will be worth staying on.
Medically, most of Ky's labs came back ok. Her felbatol level was pretty high but it's probably due to the time of day the lab was drawn. I'm pretty sure Ky has a sinus infection but am waiting until saturday to see how she does. She had a fever earlier in the week and now just thick, green drainage, which is making her cough. She needs to be 100% cleared up by her MRI on the 18th, so we'll cross our fingers. Our biggest issue recently has been her behavior. She is not in any way trying to be mean but when she gets excited, she has been pulling hair, ears, you name it. Her sister has been the main victim in the "Kylie attacks" and poor Ava just shrugs it off. Between the 2 girls lately, I feel like I have two "terrible 2 yr olds". Ky totally skipped the terrible 2's but they are in full force now. Ava came running to get me yesterday, saying, "Kywie no nos!" I went into Ky's bedroom and the entire dresser was emptied all over the room. Ky was hiding in the corner, behind her doll house, giggling. She's lucky she is so darn cute.
We have been having some success again with the potty training this week. Kylie has gone quite a few times and Ava finally started going again. Both girls seem to have an allergy to their diapers, so I would love to get them out of them. Hopefully daddy will continue the training this weekend- haha. =)
I am started to come down with something today. I haven't been sick in forever, so hopefully it will leave soon. Neil and I have been continuing to go to the gym pretty regularly and Neil has been losing quite a bit of weight, (while I only seem to be losing sweat). He is planning on running in the 5K at the TS walk in May. I am more a walking type of girl, so I may pass up the opportunity.
Not much new to report. My "huneee" is calling for me, (what Ky has been calling herself)=). Have a good weekend!
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As most of you know, Kylie lost one of her best girlies this past June. Jess Marie Beecher was only 3 years old and passed away from complications she had from a prolonged seizure. The Beechers are wonderful friends of ours and are doing the most amazing thing in Jess's memory.
Jason, Jess's dad, is a photographer and plans on spending the summer of 2009 visiting national parks across the country. He will be photographing his journey and selling the prints to raise money for the MN Epilepsy Foundation and for the TS Alliance. He has the above website set up to explain his journey, as well as an online store to order merchandise. People can also sponser his trip. Kylie and Jess spent all but 1 or 2 admissions together on 7940. It seemed when one started having seizures and got admitted, the other wasn't far behind. Their family means the world to ours. The month before Jess died, the drove all the way from Fargo, ND to St Paul, to participate in the TS Walk and support Ky. This was an 8 hr round trip for them, yet they did it, all because they love our girl. Now, they are continuing to show love for our girl, by helping raise money for her horrendous disease.
Jess lives on in the beating heart of a baby girl and in the kidneys of a grandmother. Amidst their grief, the Beechers were thinking of others and donated Jess's organs. Now, I ask you to help them honor the memory of a beautiful 3 year old girl. Again, visit www.journeyforjess.com.
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Step Forward to Cure TSC~ Saturday May 17th on Harriet Island, in St Paul, MN
Monday, February 4, 2008 7:18 AM CST
Good morning. I hope everyone had a great weekend. We were so busy, this is the first time I've had to sit down and relax! Here's a recap of the past few days~
On thursday, I took the girls to the dentist. For Ava, it was her very first visit and she handled it like an old pro. She sat in the big chair and let them brush, floss and polish her teeth. The dentist said we need to start flossing her teeth, since they are so close together. I said you are lucky we are brushing them! As for Ky, who has been to the dentist a few times, was not happy to be there. We finally got her sitting in the chair and she did pretty good with the brushing and polishing, (no flossing, due to the large gaps in her teeth). Then it came time for her first xrays. The poor girl had to be strapped down and wrapped in a papoose. They wanted me to go sitting in the waiting room- no thanks. I stood outside the glass door, so Ky could still see me. The large crocodile tears running down her face about broke my heart. I have a strong dislike of going to the dentist, so I know where she is coming from. After it was all said and down, both girls checked out with no cavities. As we were walking to the van, I about did a happy dance when I realized this was the first time that we went to an appointment and had to walk more than 30 feet to get there~ and we did not have the stroller! Both girls walked in like big girls! This is a huge feat for us, since the stroller has been a big part of our life for the past 40 months. It goes to show how much Ky's strength, tone, stamina and gait have improved since coming off the transene. Her last dose was last night, so keep your fingers crossed the seizures stay to a minimum. As we reached the van, Ky went face down into the curb, having a seizure. The lady glaring at us for parking in the handicapped spot turned away. =)
On friday, we took all the kids to McDonalds Playland for lunch. Later in the afternoon, Ky's homecare nurse came and reassessed her for PCA hours. She will probably stay with the same amount of hours, possibly a few more. With the increase of seizures, we are playing around with the idea of sending the PCA to school with her. We'll have to see what happens. Friday night we went to the girls' friend Lili's birthday party. Ava could nit understand why she wasn't getting any presents, so we left a little early.
Saturday started bright and early. We had Ava's birthday party at "The Eagle's Nest", an indoor playground. The kids all had a blast and we left w/ Ava in sugar overload. Later that afternoon, we headed to Stillwater for my Grandpa's 75th birthday party. My Grandpa is amazing, still working, traveling and enjoying life. Ava played with her cousin Maddie all night, having a great time shrieking, running and giggling. Ky is more content to hang with the adults.
Sunday morning we met with a woman from the TS Alliance, regarding the walk. If anyone would like to join us on saturday, May 17th, it is going to be a great time. There will be a 5K run first, then a 5K walk. You can do one or both. Buffalo Wild Wings is catering the event, Chris Hawkey from KFAN is the honorary chair and many other fun things will take place. All of the proceeds go towards finding a cure for tuberous sclerosis. Since I am the chair of the walk, I may be hitting up family and friends for help, so be forwarned! It is a great time for a great cause. Let me know if you want to join "Kylie's Hope" team. Moving on~ after our meeting, we took Ava for her 2 year pictures. They turned out pretty good and we will get them in a few weeks. We headed over to the Olson's to watch the Super Bowel last night. If anyone watched the commercial for "Amp Emergy Drink", let's just say Ava re-inacted the commercial for all of us. It was pretty funny. We got home late and the girls are already up, raring to go. Ava has her 2 year check-up this morning and Ky has to be in Burnsville for therapy at 930. Our week is full of school, therapy and doctor appointments.
Kylie is still having many, many seizures. One tends to look different than the last one, so I am assuming the seizures are coming from all different tubors. Aside from the seizures, she is doing pretty dang good. She is happy, alert, talking a lot and walking great. We are going to try and increase the vigabatrin tonight, to see if that helps.
That's all for the moment. Thank you for your continued thoughts and prayers!
****For anyone who did not get my email, I would love for you to check out the website www.journeyforjess.com
As most of you know, Kylie lost one of her best girlies this past June. Jess Marie Beecher was only 3 years old and passed away from complications she had from a prolonged seizure. The Beechers are wonderful friends of ours and are doing the most amazing thing in Jess's memory.
Jason, Jess's dad, is a photographer and plans on spending the summer of 2009 visiting national parks across the country. He will be photographing his journey and selling the prints to raise money for the MN Epilepsy Foundation and for the TS Alliance. He has the above website set up to explain his journey, as well as an online store to order merchandise. People can also sponser his trip. Kylie and Jess spent all but 1 or 2 admissions together on 7940. It seemed when one started having seizures and got admitted, the other wasn't far behind. Their family means the world to ours. The month before Jess died, the drove all the way from Fargo, ND to St Paul, to participate in the TS Walk and support Ky. This was an 8 hr round trip for them, yet they did it, all because they love our girl. Now, they are continuing to show love for our girl, by helping raise money for her horrendous disease.
Jess lives on in the beating heart of a baby girl and in the kidneys of a grandmother. Amidst their grief, the Beechers were thinking of others and donated Jess's organs. Now, I ask you to help them honor the memory of a beautiful 3 year old girl. Again, visit www.journeyforjess.com.
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Step Forward to Cure TSC~ Saturday May 17th on Harriet Island, in St Paul, MN
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Wednesday, January 30, 2008 6:50 AM CST
What is up with this MN winter? Monday is was so beautiful out we took an hour and a half walk outside. Today, there are multiple school closings because it is so dang cold out! Ava had ECFE last night, (sort of like a parent-child early pre-school class), and she was screaming "Cold! Cold!" as we were getting out of the van. -15 is pretty cold, especially w/ the windchill -40. Brrr!
Anyways, yesterday afternoon I was ready to run over to Dr Frost's office yesterday and give him a giant hug because of how great Ky was doing. However, she snapped me back into reality late in the day after she had 8 seizures. We cut the transene dose again monday morning, so we are expecting to see a big increase in seizures over the next few days. She will get her last dose of transene Sunday night and then we cross our fingers that Valentine's Day will not become the yearly curse we have come to know. Ky has been doing great though. Her walking has really gotten more steady and I haven't seen her fall in quite a few days. Her muscle tone in general seems a lot better. And the best part, as she was watching Seseme Street yesterday, I watched as she actually started COUNTING along w/ the characters. Granted, she didn't get past the first few numbers but for her this is huge! She continues to recognize more letters as well. Ky seems so much happier the past few days, which I love to see, as that is our goal for her in the long run~ to see her happy. I was watching her and Ava holding hands, giggling and dancing yesterday and I think of how blessed we were to have Ava. She came into our lives at the perfect time. She was such a suprise yet God knew how much we would need her in our lives. And speaking of, it's hard to believe my "baby" will be 2 on Saturday. These past 2 years have gone by so fast! To celebrate Ava's birthday, we are planning a fun morning w/ Ava's buddy's on saturday morning. We are heading over to "The Eagle's Nest", an indoor playground/park. Hopefully we will have a good time! On Saturday night, we are heading down to Stillwater to celebrate my Granpa's 75th birthday. Happy Birthday Grandpa! My grandparents had the unfortunate displeasure to fly in to MN yesterday from FL, so I'm sure the weather here is a sock to their system. Hopefully we can make it up to them at the party!
Please continue to pray for seizure control for Ky and to anyone outside today~ stay safe! The weatherman just said it is 10 minute skin freeze time today!
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For anyone who did not get my email, I would love for you to check out the website www.journeyforjess.com
As most of you know, Kylie lost one of her best girlies this past June. Jess Marie Beecher was only 3 years old and passed away from complications she had from a prolonged seizure. The Beechers are wonderful friends of ours and are doing the most amazing thing in Jess's memory.
Jason, Jess's dad, is a photographer and plans on spending the summer of 2009 visiting national parks across the country. He will be photographing his journey and selling the prints to raise money for the MN Epilepsy Foundation and for the TS Alliance. He has the above website set up to explain his journey, as well as an online store to order merchandise. People can also sponser his trip. Kylie and Jess spent all but 1 or 2 admissions together on 7940. It seemed when one started having seizures and got admitted, the other wasn't far behind. Their family means the world to ours. The month before Jess died, the drove all the way from Fargo, ND to St Paul, to participate in the TS Walk and support Ky. This was an 8 hr round trip for them, yet they did it, all because they love our girl. Now, they are continuing to show love for our girl, by helping raise money for her horrendous disease.
Jess lives on in the beating heart of a baby girl and in the kidneys of a grandmother. Amidst their grief, the Beechers were thinking of others and donated Jess's organs. Now, I ask you to help them honor the memory of a beautiful 3 year old girl. Again, visit www.journeyforjess.com.
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Step Forward to Cure TSC~ Saturday May 17th on Harriet Island, in St Paul, MN
Tuesday, January 22, 2008 1:32 PM CST
**Update Sat January 26th 1252am**
Dr Frost was not kidding when he said to expect a lot of seizures. Wow- we have not seen this in awhile. Wed night I was up pretty much the entire night w/ Ky, while she seized her butt off. She has been having quite a few during the day as well. Things slowed down a bit tonight though. Neil only saw 2 while I was at work. I do have to say her tone and gait is much better. Andrea and I took the girls to the mall on thursday evening and Ky walked pretty much the whole time. We oonly had to hold her hand, verses keeping her upright. We go down a pill on monday, so hopefully we will continue to see improvement and not more seizures. She had labs drawn on thursday, so hopefully they will all come back ok. Ky also starts her extremely busy week of therapy. We are hoping to get her caught up enough to explore some new options for the fall. We'll keep you posted on that later.
I just have to say that Kylie is probably the sweetest kid I have ever been around. I know as her mom, I'm probably biased but oh my gosh~ she has the most incredible smile and she just simply loves. I can't really explain it but even with her limited vocabulary, she lets me know each day how much she loves me, or she she says- "wuv-oo". She is the brightest part of my day, no matter what she has been through. Have a good night!
Kylie had her appt w/ Dr Frost yesterday and we got a few things figured out. We are weaning Ky off her transene over the next 3 weeks. It is under the same class as valium, which could be contributing to her low tone and gait instability. It also could be a contributing factor to why the diastat has lost it's affect. She has been on it for over a year, so keep your fingers crossed. They said to expect "a flurry of seizure activity", as most kids have withdrawl seizures coming off of it. As long as we don't end up seizing every 3-5 minutes again, we should be good. The next step will be to get her off, or at least decrease, her zonegran. This is the med she was off of for 3 days last year, after not having a seizure for 9 months, and the seizures came roaring back. We are hoping to get to about 50mg 2x a day, instead of the 75mn and 150mg she is on now. When we last got to 50mg 2x a day, Ky started walking and talking. Hopefully these changes will help and the fog will continue to lift. She is currently on 5 seizure meds, which I can't imagine is good for her body or development. If we see a big increase of seizures, we have plenty of room to increase the vigabatrin. Although Ky seems more impulsive since starting the Keppra, we realized she has not had a single cluster of seizures since starting it in Sept. So that med will be staying on board, as well as the felbatol for the time being. Dr Frost was not concerned w/ Ky's blood sugars, as he said diabetes is not TS related. Hopefully her blood sugar of 375 over the weekend was just a fluke. If not, we'll follow up w/ Ky's primary dr about it.
Ky had her eval for the conductive education program last week. She did pretty good, even though she had already had 2 therapies that day. We are going to start back up w/ them next week, so hopefully it will help. She is going to be a busy girl! Her is her schedule~
Mon 930-11am Conductive Ed
Tues 8-830am Speech
9-1130 Pre-K
Wed 8-845 OT
845-930 PT
Thurs 9-1130 Pre-K
Fri 8-9am PT
1030-11 Speech
1115-1245 Conductive Ed
She may even start music on saturdays and a dance class in the spring. It seems like a crazy schedule but we figure these are the years her brain is going to absorb the most and we need to get her as far on tract as possible before she goes to Kindergarden in a few years. I am hoping to look back and be grateful we did all this. We are so lucky Neil's schedule can be flexible so he can take her to most of her therapy. None of the above even includes all of her dr appts, although they have seemed to slow down the last few months. We may slow things down a bit this summer. We'll see how she does.
I was going to take Ava in for her 2 yr pictures this week but the poor girl looks like something out of a horror movie. It has gotten better but she fell over the weekend and has a half-horseshoe shaped cut on her cheek. I have a feeling it is going to leave a scar but we'll see. She was up really late last night, so we spent some time snuggling and rocking in her room. We sat and talked, which I guess I never really have the chance to do. I was suprised how much she knows- from all of her body parts, including eyelashes, eyebrows, cheeks and chin, to signing parts of and being able to sign the entire song of "Itsy Bitsy Spider" and "Twinkle Twinkle". It seems like we are so busy w/ all of Ky's stuff we don't get a chance to really spend quality time w/ Ava. She is smart and sassy ans such a neat kid, even though she does drive me nuts some days. =) It's hard to believe my baby will be 2 in 11 days! I guess she isn't a baby any more.
Ky is spending the evening w/ Grma Sue, while Ava and I go to ECFE and Auntie Kari's basketball game. We are having dinner w/ Auntie Andrea on thursday and we will be spending the weekend working on our takes- ughhhhhh.
For anyone who did not get my email, I would love for you to check out the website www.journeyforjess.com
As most of you know, Kylie lost one of her best girlies this past June. Jess Marie Beecher was only 3 years old and passed away from complications she had from a prolonged seizure. The Beechers are wonderful friends of ours and are doing the most amazing thing in Jess's memory.
Jason, Jess's dad, is a photographer and plans on spending the summer of 2009 visiting national parks across the country. He will be photographing his journey and selling the prints to raise money for the MN Epilepsy Foundation and for the TS Alliance. He has the above website set up to explain his journey, as well as an online store to order merchandise. People can also sponser his trip. Kylie and Jess spent all but 1 or 2 admissions together on 7940. It seemed when one started having seizures and got admitted, the other wasn't far behind. Their family means the world to ours. The month before Jess died, the drove all the way from Fargo, ND to St Paul, to participate in the TS Walk and support Ky. This was an 8 hr round trip for them, yet they did it, all because they love our girl. Now, they are continuing to show love for our girl, by helping raise money for her horrendous disease.
Jess lives on in the beating heart of a baby girl and in the kidneys of a grandmother. Amidst their grief, the Beechers were thinking of others and donated Jess's organs. Now, I ask you to help them honor the memory of a beautiful 3 year old girl. Again, visit www.journeyforjess.com.
~Jess and Kylie~
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Step Forward to Cure TSC~ Saturday May 17th on Harriet Island, in St Paul, MN
Thursday, January 17, 2008 9:17 PM CST
I have to say I'm glad I "bit the bullet" and bought the more expensive tickets for "Seseme Street Live". We were 5 rows from the stage and the girls were completely mesmorized by the show. Of course, as our luck would have it, the tallest woman in North America was sitting in front of us and she did not appreciate Ava's attempts to move her over! Luckily, our seats were right on the aisle, so the girls sat on my lap and we hung out in the aisle a bit. The characters came right up to them, shook their hands, gave hugs and hi-fives. I thought Ava was going to have a heart attack! It was a little over whelming for Ky when it first started. The excitement made her have a seizure right off the bat. After the show was over, Ky was so cute. She was waving and waving at the stage, would walk a few feet, turn around and wave again and so on. We had a good time before the show at the Spaghetti Factory. Ava looked like a grease ball by the time she was done but the food was great. A huge thanks to my mom for taking Neil's spot at the show, (he thought the Wild game would be more fun) and to my dad, for dropping us off and picking us up. The girls sure love their poppa! We got to catch up w/ Alicia and Lili too. Ava and Lili had a good time dancing during intermission.
Aside from all that, I'm glad we got to go. Ky still wasn't feeling very good and looked pretty sick. She was much better this morning, so we sent her to school. Both girls will be on antibiotics for strep for 10 days and hopefully we can get through the rest of winter without any more infections or major illnesses.
We have started checking Ky's blood sugars and will continue to do so through the weekend, so we can discuss the results w/ Dr Frost. As I have said before, she has been having some instances of low blood sugars. This afternoon, she had a high reading. I'm not really sure what all of this means but with the amount of medication she is on, we have real concerns about them affecting her liver and pancreas. So we'll see.
While the vigabatrin was doing a pretty good job the first week she was on it, some of the seizure have come back w/ her being sick. I am hoping things will settle down again once she is feeling better. She only had 1 seizure that we saw today, so I guess that is an improvement. We are going to bump her zonegran down again next week. We see Dr Frost on monday and will hopefully have more to share then.
Tomorrow is a busy day. Ky has PT at 8am, speech at 1030am and then an eval for the summer therapy program at 1130 in Burnsville. We will hopefully get a better idea about what the therapy plan for this summer will consist of. We are also supposed to get Ky into the feeding clinic in the near future, to work on some of her eating issues. Her weight is down a bit and both her and Ava weighed in at #31.4 lb on tuesday- how weird. They just carry their weight quite a bit differently!
On another note, old neighbors of ours came over tonight so the daughter could do an experiment for school on our dogs. It tests their intelligence. For anyone who knows our dogs, our shih tzu, Sadie, who is 10 1/2 and blind in one eye, is apparently the smartest dog in the group. Suprisingly, our bulldog, Buster came in 2nd place and our golden retriever, Bailey, who we thought would take the show, failed every test. =)It was pretty interesting.
For any future planners, the annual Step Forward to Cure TSC walk is going to be on Saturday, May 17th, on Harriet Island in St Paul. A 5K race is also being added. We are still in the planning stages but I'll post more as I know. "Kylie's Hope" will be walking once again, if anyone is interested in joining us.
A huge HAPPY BIRTHDAY to my brother Andy on the 20th! He is still in Iraq and is planning on coming home for some R&R in May, for a weeks. Have a great birthday Andy! We miss you and love you!
I am hoping for a non-eventful weekend and I'll update again after our appt on Monday. Have a good weekend!
Monday, January 14, 2008 8:46 PM CST
UPDATE Tues Jan 15th, 9pm~
So much for the good update. Both girls have strep throat and Ava has impentigo. Luckily I decided to check out the new urgent care around the corner from our house or we would probably be missing Seseme Street Live tomorrow night. Hopefully the fevers, crabiness and few seizures we have seen will be gone tomorrow. Cross your fingers!
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Kylie continues to do well the past few days. She had a seizure during her nap today and one after she fell asleep saturday night. Otherwise, we haven't seen any. Her speech is continuing to do well and we have been hearing a few more 2 word phrases. She is still somewhat agressive w/ Ava at times but how much is do to the Keppra and how much is do to having an annoying younger sibling, who wants whatever you have? =) Ky has been amazing us w/ her ability to remember letters and now a few numbers. She added a few new letters this weekend. We are going to bump her zonegran down again next week, so hopefully we will continue to see improvement in her cognitive functioning and not an increase in seizures. However, her eyes are starting to sparkle again. =)
Ky has a full week. Tomorrow, she has speech bright and early at 8am. With the high in the morning expected to be below zero, I'm glad I'm not the one bringing her! She has school right after speech and she tends to be much more talkative in class the days she has speech first. Wed she has PT and OT at Kids Abilities. We are just starting OT there, so we are hoping to see improvements with a more consistant OT schedule. Wed evening, Grandpa and Grandma are picking up the girls and I, along w/ my friend Alicia and the girls' good pal Lili. We are heading off the the Old Spaghetti Factory in Mpls and then to "Seseme Street Live: When Elmo Grows Up!" We have amazing seats and are so excited to go! If any of you remember, we missed the big show last year, as Ky was in the hospital. Luckily, our friend Angela was awesome enough to get Elmo to come visit us! Now with both kids older, I can't wait to see the looks on their faces when they see their favorite Seseme Street friends in person. I am just crossing my fingers it goes better than the whole Santa saga! Ky has school again thursday, then PT, speech and an assessment for therapy on friday, w/ the therapy place we took her to this past summer. It's a Conductive Education program and we feel they got Ky to do some amazing things. It's a little spendy but if we can swing it, we are definately going to sign her up again.
Thanks to Auntie Kari and Grandma, Neil and I both got a chance to get away this past weekend. I met up w/ my friend Shannon for a day of scrapbooking and Neil headed out w/ some buddies for ice fishing. The girls and I spent Sunday cleaning, while Neil worked. Or, to be completely honest, I cleaned while the girls trashed everything I cleaned. For example~ I vaccumed the living room and went to get a bag to empty the canister in. In the .065 seconds I turned my back, they managed to get the canister off the vaccume, dumped the huge amount of contents all over the rug, and proceeded to "finger paint" w/ it. Ava decorated herself and the house, train tracks and dog w/ blue chalk while I was cleaning up the dust mess, as well as climbed into the Ky's bath water after I already had Av dry and dressed earlier in the day. I don't know which one tires me out more. Both girls have taken up potty training again. Ava is much more into it than Ky, but even Ky has gone potty a few times the past few days, as well as the other job. The "Smartie" candies have become the 6th food group for incentives around here.
We see Dr Frost next week, so hopefully he has some more input on our girl. I think we will have some more clarity on things after the MRIs in Feb or hopefully at least a sense of peace about Ky's organs and not more questions. Thank you for continuing to check in on us!
Monday, January 7, 2008 2:10 PM CST
*Update Thurs Jan 10th~
Unfortunately, a few seizures today but talking up a storm! Ky has been so quiet the last month or so, so this is great news! Speech at school said she did great today- putting 2 words together! In the car she said, "Elmo please!" and "Elmo buddy" (Elmo is her best buddy, aside from Miss Ava). Last night she said "birthday cake". Her teacher said she was rowing in the rowboat at school, taking turns w/ another kiddo, (I am just now wondering why there is a rowboat in their classroom or what she was talking about). She also knows about 6 letters and is also starting to identify some numbers. I guess all that Seseme Street is starting to pay off. Neil and I joined the gym, so we are going to introduce the girls to the daycare this weekend. I have never left them in the care of strangers, so I am slightly freaked out but I know they will have a blast! We are then going to head over to Como Zoo, unless we get a lot of snow. Pray the seizures continue to stay at a minimum amount or better, to leave her alone. Continuing to pray.................
*Update Wed Jan 9th~
3rd day on vigabatrin~ no seizures. TONS of talking, a few new words, even put a few words together. OT eval and did great in PT. Peed on the potty! Wild tonight and finally crashed at 945pm. School and port flush tomorrow. Keep praying!!
**UPDATE Tues Jan 8th 10pm**
Two days on the vigabatrin, 2 seizures total, one yesterday, one today. Not sure if it is huge coninscience either but Ky's speech seems better~ more words, more clear. Praying so hard tonight this med is the answer to our prayers. I feel a little bit of HOPE again.
Ky will have her MRI of her head and abdomen on Feb 18th~ praying for no new tumor growth in any of her organs and that what she has remains stable.
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We bit the bullet and started the vigabatrin this morning and have yet to see a seizure today. I emailed Dr Frost's nurse on friday and told her we are taking Kylie off some meds. She is having seizures on them and they are causing some cognitive issues, so why stay on them. We have excepted that seizures are probably going to be a part of her life but we want to see her functioning cognitively as fully as possible. The nurse thought coming off the transene would cause some pretty serious withdrawl seizures, so we are going to wean the zonegran. This is the med we weaned her off of over a year ago. She started walking and talking more when coming off of it. 3 days after being off of it totally, she was seizing every 3-5 minutes and we landed on 7940 for a month. We are hoping going on the vigabatrin will conunteract the seizures. Keep your fingers crossed.
Neil called me at work on friday evening, saying Kylie was acting funny, sort of shaky and whiney. He didn't think she was having a seizure. I had him give her some sugary candy and she was back to herself within 10 minutes. So, I am a little more concerned she is having blood sugar issues. After her swallow study on wed, we were expecting her to pass the barium within a day or 2. She was in horrible pain yesterday, when she finally passed it, so maybe there is something to the slightly abnormal delayed gastrin emptying study. A few more things to bring up at our appointment. Aside from that, both girls continue to be healthy and happy, (aside from Ava's frequent temoer tantrums- she is truely out doing herself today).
Ava starts ECFE again tomorrow and Kylie has a full week of school and therapy. That's all for now. Happy Birthday Sweet Angel Jess!
Thursday, January 3, 12:50 AM CST
***For some reason, the new slide show disappeared and the old one came back. I'll try it again. Sorry!!***
Just a quick update~ Kylie passed her swallow study, then proceeded to choke on her water 2x on the way home- go figure. Her reflux is now grade 1-2, instead of 3. THe only thing the dr noticed was a possible delayed gastic emptying. She would need a nuc-med test if we want to follow up on it further. SInce she is not really showing signs of issues w/ it, we will probably skip the test.
I talked w/ Dr Frost's nurse and they are going to try and get her MRIs scheduled before we see him on the 21st, so we can get results back. She needs to be sedated for it, so I'm not sure when they can get us in. They are supposed to call back tomorrow to go over meds. The only thing we really got out of today is Kylie has a strong liking to Barium. She sucked it down like something I've never seen before. It figures, for a kid who won't drink juice or chocolate milk.
New slide show above for Jason =)
See below for Sunday's post~
Good eveing. I just got home from a much needed girls night out, with girls I have been best buddies with since grade school. Love you guys! Anyways, we have been so busy the past few days, I'm not even sure where to start!
Both girls are finally healthy again. Ky is down from 10-15 seizures a day to somewhere around 5 or so. They are all her regular ones, a few face plants but lots of smiles with them. As a last ditch effort to try and gain control, we are adding a combination on vitamin B6 w/ a calcium/magnesium citrate. The combination of the 2 are supposed to help w/ seizures. We are also adding back her Omega 3 w/ DHA supplement, something we have been out of for a while now but did seem to help when she was on it. We'll give it a few more days and then start the vigabatrin. We have a pretty good stock pile of it, so we should be ok for a few months. Ky has her swallow study on wednesday and then we will follow up with Dr Frost and schedule her MRIs. I also need to get her labs scheduled. I think we'll give it until March to work with the meds to get seizure control again. If it doesn't work, we'll schedule the VNS. When that fails, (not really feeling too optimistic!), we can at least say we tried everything possible to give Ky a seizure free life and move on. I was reading old journal entries that I had written from 2005 and can not believe we are still battling these damn seizures. Was I just native or increadibly hopeful? I think we are starting to fully embrace how long and hard this journey truely is going to be. When we do get seizure control, we worry about the cognitive stuff. Ky has 2 large, matching tubors on each of her frontal lobes. When people get in car accidents, they usually damage their frontal lobes, which can cause personality changes and impulsiveness. Although we love Ky's sweet, loving personality, she is one of the most impulsive kids I know. It's one of the things that bugs me most about this disease and it's something that will probably never get better. So if we are with you and she pokes your kid"s eye, she's not being a brat~ she just probably can't help it. But, we are working hard to curb these things. I suspect some of the medications play a role in her impulsiveness, especially the Keppra. We have noticed a huge change in her since starting it, yet it has helped her seizures. So, we are damned if we do and damned if we don't. SO, I guess my replay of the week is turning negative, so let me spin things around a bit.
Neil and I have been truely enjoying our time home with the kids. They have been treating us to sleeping in and for the most part, have been pretty well behaved. Ava is approaching the terrible two's and is fully embracing the title. Everything is, "NO! NO! NO!" or "No mama!" She loves to act like a limp noodle or like the exorcist if you are trying to get her to do something she doesn't want to do. Although she has been walking a mere 4 months or so, she has cat-like skills on running away from us when ever she is not supposed to. She also loves to lay on the floor and kick and scream, especially in public places, like the middle of the floor at the GAP. She is worse if we put her in the stroller, as she pulls Ky's hair and anything else within a 2 foot radius. So, as well as being banned from Target, she is now not allowed at the mall, or at restraunts that requires any talking more quiet than a loud scream. But truely, we have enjoyed our time at home. We had a great idea to take the girls sledding for the first time, a few days back. MN has been getting snow dumped on us left and right, so there was plenty to play in. After spending 20 minutes getting them dressed, then strapped down in car seats, a quick drive to borrow Auntie Kari's sleds, then to the park. Neil put Ky in her sled and she proceeded to face plant in the street. We finally get to the hill and ava decided to go down first w/ mom. After nearly taking out some huge man, we made it to the bottom, where Ava was completely covered in snow. She wanted it all off her, would not walk up the hill and said, "NO!NO!NO!" when I asked her if she wanted to go again. Neil then took Kylie down, where she proceeded to give him the same reaction. So, after spening 45 minutes to get to the park, we were there for less than 5. We took the kids for hot chocolate after, where neither liked it. In all, we chalked sledding up to about as fun as the pumpkin patch and crossed it off our list of things to do for at least 5 years.
We took plenty of shopping trips this week, the girls had a sleepover with Grandma and Grandpa, Neil and I painted the living room, we all spent hours laughing with the family and had fun playing with all the new toys. We also had friends with other TS kiddos over for dinner a few nights ago, which gave us time to catch up with everyone. My sister and I took the girls for haircuts today, then to lunch and for a ride on the Merry-Go-Round. Neil and I even snuck off to a movie today. We are planning a low-key New Years. We over-slept for our only therapy session last week, so we need to get in gear for a week of theraoy this week and Ky goes back to school on thursday. I don't think she has gone in almost a month!
My wish for the New Year is the same as it has been the last few years~ that I'll lose those last few pregnancy pounds, that we will stay more organized, pay off our debt and that we will get seizure control. I'll be happy if I don't gain any weight, if we don't go deeper in debt and if we all stay healthy. We continue to pray for the safety of my brother and cousin, the peace for our beautiful friends without their babies, for the health of all of these special kiddos, for the marriage of the parents of all of these kiddos to stay strong, and for the sanity to get through each day. We continue to be blessed with an amazing family and group of friends and strangers, who continue to pray for our girl and check in on us. We hope you all have an amazing 2008. With love, The Gibbons Family
Merry Christmas
***Click on above link to view our holiday ecard~ 2007 with the Gibbons Family***
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