History

Friday, March 7, 2008 7:06 PM CST

Hey everyone! Skylar's doing pretty well. She still has a bad day here and there but she's doing good. In January and February Sky had strepthroat twice and some stomach flu. Not fun, but she's better and doing good. She's been going to physical therapy once a week to try and help her get back and maintain the skills she lost when she was in the hospital and so sick for a while. Her torticollis is really bugging me and is worse than it has been in a long time. We attempted to get botox done for drooling and the torticollis but her Dr. informed me of recent deaths in children related to botox. Now these deaths were in kids that were getting botox for spasticity and probably overdosed and it spread to other areas of there body including the lungs which is what killed them. I know it's scary so we backed out. Although he said he felt confident giving it to her because he was only going to give her a tiny dose to see how she reacts to it before he'd give her a full dose. But we scheduled another appt for a few months and we'll see what the FDA has found outat that time. Her seizures are (knock on wood) pretty good. She has one or two every couple of nights or so and thats really it. SO were just watching and hoping this sticks.
Thanks for checking in

Wednesday, January 30, 2008 3:27 PM CST

We went to Cleveland Clinic on 1/5 and basically it confirmed what I already knew. There's no magic answer for her seizures. Seizures are hard to controlwith Rett Syndrome and we just got to keep trying. She's actually doing much better with the seizures. Shes having one or two every couple of nights in her sleep. Saturday she had quite a few and basically slept all day but that was a rare kind of day. She just got over strep throat but other than that (knock on wood) she's been pretty good. It took her about a month to fully return to her "normal" after the hospital but she's finally much better. Thanks for checking on us.
Nikki

Friday, December 14, 2007 1:50 PM CST

Well, I wish I had good news. Skylar was just released from the hospital on 12/10, she was admitted 12/5. She had to go by ambulance from school because she stopped breathing with a seizure and required oxygen. She required oxygen the rest of the day and spiked a fever. She was out of it for days hardly opening her eyes. She has seizures every night. Last night she only had three but the night before she had at least 20. They ran tons of test in the hospital. Turns out she has a superbug infection in her stomach. She had a low protein and albumin level in the hospital and got all swollen and required an albumin infusion while there. Had eeg's done, chest x-rays, and lots of blood work. Shes ona really strong antibiotic now to get rid of superbug. She also on a new seizure med. Four seizure meds, VNS, and ketogenic diet and still having seizures everyday. Blows my mind. She's going to Cleveland Clinic 1/4/08 for a second opinion. She's still not herself, she can't sit up, hardly wrings her hands, and is pretty sleepy. She's so much better than when she was in the hospital though. I think I may put her in physical therapy again to help regain her strength back. I'm sure there's something I'm missing, she's went through so much these past few weeks but she still will give you a smile and laugh. Will update soon.
Nikki

Wednesday, June 6, 2007 8:38 AM CDT

I know, I know, it's been a while. Recently we've been pretty busy. Sky's seizures got really bad again, she was turningblue, shaking all over and requiring diastat to stop them like 2x a month. So,we opted to try the ketogenic diet. This is a diet that takes all her carbs and sugar away so her body has to process fat for energy. It makes her brain work differently. There's a really great movie about it called First Do No Harm, i got it from the local library. (Thanks Shirley) She went in the hospital to start it on 5/30, she has to go in the hospital to make sure she tolerates it and it doesn't make her sick. She stayed until 6/3, 2 days longer than she was supposed to due to seizures requiring Diastat(rectal valium) 2x in 24 hours. She has a formula i have to feed her so it's not as hard as it could be. I also have to check the ketones in her urine to make sure she's in ketosis, which is what makes the diet works. The seizures she had in the hospital were just her usual time to have some seizures, she hadn't had any in about a week or so, so she was do. The diet doesn't work instantly. I'mkeeping my fingers crossed that this works. She's been going to a respite center recently. Respite is for special needs kids to get away, and parents to get a break. The place she goes is called Annie's House at Anne Grady Center. I think she really likes it. She's excited when I take her and worn out when I pick her up. She had a pool party last time she went. This is good for her and for mom. She has a place of her own, and mom has a weekend free. I felt really guilty the first time, but also felt released, to do what I want. She's been 3 times, allfor aweekend at a time. Mikaela is usually at her dad's or grandma's, so it's typically a no kids weekend. Very nice! Well I've quit my job. It got really hard to work there and all the things going on with Sky. I'm going to stay home with the kids this summer and if everything goes good with the diet, hopefully I can go to school in the fall. I'm really looking forward to it. I've been wanting to do it for a long time. I'd like to go tobe a nurse, they have LPNclasses that are about a year long. So, things are going okay right now, we're doing pretty good. I'll update with some pictures soon. Nikki

Tuesday, February 6, 2007 10:22 AM CST

Okay I'm way overdue for an update. Actually things have been pretty good. She still has her seizures, but still not as bad as they were. They happen about once a week and she has 1-5 of them. It' sounds worse than it is. It's really not as bad as they have been. She still has time like 2 weeks ago where she had at least 8 in one day and some the next day too. That was a bad day, but they come in spurts, not too common. She's pretty happy and goes to school on the bus everyday. She seems to like it. Mikaela's doing pretty good. She's getting mostly good grades in school. Her reading grade is not good because she doesn't turn in her homework that she does, why I don't know but her teacher is trying to work with her. I'm pretty good. I'm very happy. For those who don't know, my boyfriend Dave and his son Tommy live with us now. It's taken some adjustments but I think things have finally settled and we're doing good. I'm still working at Toledo Clinic, I don't like it at all, but I don't have a choice right. Well I have some wonderful, wonderful neighbors. The, out of the goodness of their hearts, no asking, nothing in it for them, built us a ramp on the back of the house. Took about two days, and it's great! I hardly know these neighbors, but they are wonderful. I also got a lift put on my new van. I'm not as happy with that as I thought I would be. I'm kinda dissapointed with it. It just is a lot of work and takes up a lot of room, and just not so sure about it yet. I feel life has taken a great turn for us, and feels complete, and we're all pretty happy now. Mom is in a much better place and I think that helps Sky too.

Wednesday, August 9, 2006 10:11 AM CDT

Okay, time for update! Things have been going prett good. Sorry for the lack of updates. She went 6 weeks with no seizures!!! Yeah!!! She's having them now but not nearly as many. We never did start the ketogenic diet, she wasnt having seizures. She's still gaining weight and still pretty happy. She still has her sleepy cranky days, but hey so do I. I hope everyone is doing well.
Nikki

Sunday, June 18, 2006 6:39 PM CDT

Well, I know it's been a while. Skylar will probably start the ketogenic diet the end of this month, hopefully it alls goes good. She's actually doing very good right now. I love to say that. She's up to 40 pounds, and moms arms are and back are definetly feeling it. Hopefully I'll get that lift in my van soon. Mikaela's good and in the ymca day camp and i think is enjoying it. Skylar got her picture taken friday and they said she did really good, i hope so last year she looked so sickly i didn't even by them. Well i'll update more when i have more time, got go get showers and meds.
Nikki

Thursday, May 25, 2006 6:25 PM CDT

Well, I hate posting lately, it's never good. Skylar has MRSA, which is a really contagious, bad, staph infection. Just what she needed. Seizures are getting bad too. I'm going to make an appt. with a nutriotionist to talk about doing the ketogenic diet for her seizures. Tomorrow I pick up her wheelchair with all her modifications. A new seat, new straps, and it will be "grown", just additions to make it last longer. Insurance pays for one every 5 years. She's had hers 3 years. She's still pretty happy, a little more tired but pretty happy. It's getting so frustrating. I miss so much work. It seems like it wouldjust be easier to keep her home with me. I checked into how muc money or assistance I can get if I quit my job, $330! That's crazy! So of course I'm still working, LOL! Mikaela and Sky are going to Mamma and Pappa's on Friday, she'll get real excited about that, she loves going over there.
I just wish I could help her with these seizures. They just bring her down so much, it gets so bad. Hopefully soon. Nikki

Thursday, May 11, 2006 8:09 PM CDT

Well, unfortunately this is not a good update. Skylar was just released from the hospital. She was admitted from her Dr's. appt on Tuesday morning. She had pneumonia! Lets see, where to start. She had bloodwork, x-ray, urine (by catheter, yuck), video eeg, sleep study, sputum sample, aeresols every four hours with them pounding on her chest and back to loosen everything up. I'm probably missing something but we're home now. Oh, she was dehydrated too. She was put on iv, and iv antibiotics. I really don't understand how she could get dehydrated. She was hooked up to her pump all night long and got 3 cans of pediasure. She was really, really lethargic though. She's so much better now. Dr. Nagel has to look at her video eeg, but what he did look at while we were there showed "a lot of activity". Which I guess means a lot of seizure activity. So we have to think about a new med, possibly trying to get approval to use a med from canada. I also need to think about the ketogenic diet http://www.epilepsyfoundation.org/answerplace/Medical/treatment/diet/
You can look up more at this website. It's basically like the atkins diet, high fat, no sugars or carbs. But I'll look into it some more. Well hopefully everyone else is good. Sky will be back in school tomorrow, she's SO much better, so happy. Talk to you soon.
Nikki

Wednesday, May 3, 2006 6:35 PM est

Hello everyone! Well we went to Lansing this weekend for a Rett Family Getaway at the Sheraton. We met some families and two other families from Toledo came too. You should check out Sky's friend Amber's website, it has pictures from the visit. www.caringbridge.org/oh/amberheiss
Some of it was nice, and some was a little scary. Scary meaning, some of the older girls make me a little sad. I don't want Sky to be like that. I didn't really see any emotion from any of them. There was 2 girls that walked and that's always impressive. There was a 7 yr old girl there that walked and walked very well, very impressive. She seemed very happy. Sk didn't have a good weekend. She was trying to have seizures all Saturday night while at the hotel. Her typical seizure is left arm up eyes fluttering or rolled up and whole body stiff. Saturday she'd open her eyes left arm kind up, and semi-stiff, so that's why I say trying to have a seizure. I didn't get to enjoy myself as much as I wanted. My good friend Monique from work came with us too. It's always great to have someone come. Sky also had a seizure last night, well I think it was a seizure. I was in bed and heard thru the monitor sky breathing really fast, so I went in, and her eyes were real big and she was stiff. She came out of it and the her arms were shaking real bad. She was fine after that, I think it was a seizure. She should be having a sleep study and video eeg to find out if the weird breathing she does at night sometimes is seizures or possibly apnea. I'll find out on 5/16 when we go to the pulmonologist.
On a better note, Sky got approved for a Make-A-Wish and they will be coming to the house next week and granting her wish. Her wish, I believe, is a Disney cruise. She loves watching Disney channel and I think she wouldn't be able to handle the heat of Disney World so I think a Disney cruise would be better, and a lot of fun. I'm hoping that they will let me take my parents with me for help. That way if Sky has a bad day, they can still take Mikaela to do stuff. Plus it's always easier with someone else there. Just as simple as getting food, running somewhere real quick, it's nice to have someone there with you. I'malso going to try and do a Make-A-Wish walk on May 20th at Central Catholic High School, it goes through COSI and back. It sounds like a lot of fun, they have entertainment and food and prizes. The pictures on the website showed some kids with Shrek and Fiona characters, Sk loves Shrek! The only dilemma is I just found out that Skylar's daycare is having their annual Walk n Roll that day too. I'm not sure what to do. You can check out the Make-A-Wish website at www.walkforwishes.org
Oh and there's a great family on the Rettnet that is going to send me their daughter's old bike trailer for Skylar. It's a special needs one so she can use it for a long time. I'm so excited! Skylar will just love it! I can't wait!
You can check out more pictures of the girls at www.pbase.com/killmodell
click on we are familee and there's really GREAT pictures of the girls.
Enough for now.
Nikki

Monday, April 24, 2006 4:43 PM CDT

Unfortunately, Skylar had seizures all day Friday. She stayed at PPC (herspecial daycare)almost allday. They could handle it at first. They gave her diastat to stp them, which it did, for a while. Then they came back and there was nothing else they could do. She was on oxygen and they gave her tylenol. So, I went and got her and took her to Dr. Nagel, (it's certainly beneficial to work there). He said it was okay to take her home and not to the hospital, very glad, hate going to the hospital. We go back and see him tomorrow. We didn't really have a visit on Friday, so tomorow will be the real visit. Currently she's on four seizure meds, Zonegran, Phenobarb, Keppra, and Depakote. She's on Clonodine for sleeping, Zyrtec for allergies, Prevacid for reflux, and B6, for energy/behavior. Hopefully at this visit we can come all the way off phenobarb and soon all the way off Zonegran. She'll also get her VNS checked out and possibly set the rate higher. He'll also be ordering a sleep study and video eeg I'm sure. To rule out sleep apneaa and seizures at night.
She's starting back at PT Mondays, just to keep up on things. Oh and I'm trying to get a bike and a bike trailer so we can all go bike riding together. I tried my aunt's out and loved it, so did Sky, so I'm working on trying to get one. They're pretty expensive so it might be a while.
She's doing so much better standing, she's even trying to take steps with assistance, she's getting a lot stronger. She's getting big too! She's almost 40 pounds! She's out of all her size 5 clothes, way too tight now. Size 6 it is. Hope everyone's good, thanks for checking up on us.
Nikki

Thursday, April 20, 2006 5:13 PM CDT

Sky is doing much better. Finally she's getting healthier again. She's still congested but not coughing as bad. Much better than last week. GREAT NEWS! I just found out Sky's waiver program will pay for a lift in my van! I'm so excited! YES! YES! YES! I can't wait!
Sky had appt with her geneticist on Tuesday. She has to have a video swallow study done to make sure it's okay that she's eating since sometimes she chokes when she does eat. She also has to have an EKG because girls with RS can develop long qt syndrome which can be fatal, so it needs to be checked. She also sees dr nagel this coming Tuesday, and he'll probably be ordering sleep study and a video eeg at the same time since she sometimes stops breathing momentarily in her lseep. To make sure she doesn't have apnea and to make sure it's not seizures. I also got the reslults of her dexa scan. She still has osteoporosis and it's about the same. So we'll check again next year or two and see how it looks. Or if she gets a broken bone in the meantime then we need to figure things out sooner. Sky is almost off her Phenobarb, she'll go through this weekend and then she's done. We'll check liver levels then and see how she is. Hopefully everything's went downand it was just the phenobarb. Hope everyone is well. sign the guestbook.
Nikki

Saturday, April 8, 2006 11:35 AM CDT

Well Skylar is sick again. Upper respiratory infection, possibly sinus infection, seizures, and her g-tube site was really yucky. So she's on aeresols, and antibiotics, and saline washes through her nose to clear her out. She's doing a little better but still not herself, not as happy. No seizures since Tuesday, knock on wood. But still coughing a lot and real congested. She's goes to see her PT on monday, mor for an update and maybe to start seeing her like once a month. It's good because if I need equipment or anythig it needs to go through a therapist recommending it, I can't just say I want it and have insurance pay. So it's good to keep tabs. She also goes to the dentis on tuesday. Next Tuesday she sees the geneticist and the following Tuesday she see neurologist. Busy girl, keeping mom on her toes. She almost seems to be making more sounds lately, almos sounding like words, very cute. SIgn the guestbook, we love reading it.
Nikki

Sunday, March 26, 2006 3:37 PM CST

Skylar is doing "okay". Much better now than earlier in the week. She's had a good share of seizures this week, plus she's now on antibiotics for sinus infection, plus she had fifth's disease. Busy week! Thursday this week she goes to Cincinatti for a dexa scan. Next month she has the dentist, dr. hopkin, and dr. nagel appts. She's a busy little girl. She should have a wheelchair appt. in there somewhere too. She got measured for her modifications on Monday and hopefully we'll hear soon when they're in and we can update her chair. She went to her Mamma and Pappa's house and spent the night last night and of course had a blast. They have a new puppy, Sadie, and Sky likes her. Sky is getting so big. She's getting chunky, tall, and she's acting older. Like her laugh is more grown up, she makes more expressions/faces about things. And of course she likes the big girl show like Mikaela. And she loves when Mikaela puts make-up on her. Plus, she's killing Mommy's arms, back, hips, she's just getting too big. I need a ramp on the house, and I need a van with a lift. This is only going to get more difficult. Hopefully something comes up that can help us. In th meantime, TaTa, for now.
Nikki

Sunday, March 19, 2006 4:01 PM CST

YEAH!!! Computer is fixed!

I don't know where to start. As always still battling seizures. She was last in hte hospital on 2/1/2006, for four days. It was not fun. She had went a month without seizures, then BAM, they were non-stop. I give her diastat and it lasts and hour and the seizures come back. She's had a few rough days since. Her liver enzymes keep climbing up so her phenobarb has been cut in half again. She has cholestasis from the phenobarb and it increase the liver enzumes and also makes her super itchy! She scratches herself like crazy! Hopefuly the decrease will help that. Her last seizure was about 24 hours ago. She;s pretty happy though. Well I'll talk to ya soon.
Nikki

Monday, March 13, 2006 5:48 PM CST

Sorry no updates in awhile. I have a lot to add, but my computer
s been down. So i'll email when i can to let you know when her site's updated
Nikki

Tuesday, January 24, 2006 3:23 PM CST

Skylar has been doing good. She's going to school everyday on the bus and I really think she likes it. Yesterday she was a riot! I was calling her spaz, and wild woman, she was all over the place, of course sitting or laying. But man she was kicking and moving her arms and head like crazy, and really happy. I went to the store and had to keep dodging her legs and arms, she was hilarious. Her drug levels are kinda low, but I think she just can't tolerate too much depakote. She's definetly much happier. She went to Mamma and Pappa's and of course is always happy as can be. They said she was laughing so hard no sound would come out, I believe it, especially her Pappa, he can really get her going. I've noticed she's got a couple little bruises on her forearm again, and I believe it's from herself, biting. Not good. I hope now that the depakote has been decreased again that she'll stop. Lets hope. I'd say she's had about 15 seizures in the last 6-8 weeks, since placed on phenobarb 12/1. She could easily have 5 times that in one day before the VNS. I think that's just amazing. Hopefully we can try and take one of these meds away soon and I can see her perk up even more, that would be great. She still has her good days and bad days, but the bad aren't that bad, only has a few breakthrough seizures, and is usually happy. IRSA has new Valentines so expect them in the mail soon!
Nikki
P.S. I put new pictures too!

Friday, January 13, 2006 5:20 PM CST

Things are still good, knock on wood. She hasn't had any seizures and she's been really happy. Even her bus driver commented on how happy she's been. She's such a joy to be around. She's sitting up real good too. She went to the ortho doctor today, he's really great. He remebered Sky and he says he keeps track of his girls, meaning his rett girls. He said he has like 4 or 5 in his practice and he knows a lot about rett. He said that he had just had a new girl just diagnosed about 18 months old and wondered of support groups. I told him about the Rettnet on the internet and he asked about a local group. There isn't anything but I think it would be great. There seems to be quite a few girls in this area. I need to find a place to hold like a get together. Once I have that, I can type up like a letter or something and send it out. I think that would be awesome. I hope to set something up like that. Any ideas let me know. Well i guess there's not much else to tell, hope everyone is doing good. Nikki

Saturday, January 7, 2006 8:19 PM CST

I think Rotavirus is finally out of the house. Skylar had about 6 or so seizures yesterday, I think from when she had the diarrhea the meds went right through her, and it's kind of catching up with her. She was kind of out of it allday but she did go to school. I took her and picked her up, I didn't feel comfortable with her on the bus. Last night the girls went to mamma and pappa's house, and of course loved it. They always love going over there. I think Sky has a special bond with them. She lights up whenever she's there. Like yesterday she was kind of out of it and not really smiling or anything, but as soon as we got to their house it was like a cure, and she was fine, happy as can be. Plus she's always really exhausted the next day. She stays the night and they keep her so occupied and she's just full of laughter over there, the next day she sleeps for hours. Today she slept from about noon to six, and now she's wired. We also went to the bowling alley from about seven to eight thirty. She LOVED it! She was so smile and just watching everything and everybody like crazy. It was so loud there I thought it might be overload, but she really seemed to like it. Plus one of her favorite guys was there. Val, that's my sister's boyfriend, she was just making eyes at him and smiling away, it's so cute! Oh and did I mention that my sister is PREGNANT! She's due 6/22. She really seems excited about it. I am kind of, I really don't know what to think yet, I think it's not quite real yet. I never really pictured my sister having kids I guess. She'll find out what she's having in about two weeks, so I'll let ya know. I can't wait to find out so I can stop calling it an it and I always see these cute little things that I want to buy or tell Kristi about but I need to know what she's having first. Yeah, I'll be an aunt.
Skylar is supposed to be getting updates to her wheelchair. I called about a month ago and they told me about two weeks and they should have the approval, so I guess I'll have to call cuz I haven't heard anything from them. I did however get a denial letter from medicaid for her tumbleform seat I wanted. It was denied because she has a wheelchair she can sit in. I feel like calling them. Are they gonna pay for a ramp then so i can get her wheelchair in the house then. It weighs seventy pounds, I am not lifting it into the house, they're crazy. I have a seat on loan right now, maybe they would let me keep it, they had tons of them there. But this isn't permanent, and everytime she has seizures she loses motor control. She needs a safe seat to sit in in the house. I hope things work out.
I wish there was like a book or something that tells you how to get around the system to get things you need. It's always so difficult to get the things you need.
Sky has a couple appointments this month. She see's the GI doctor, and the ortho doctor, hopefully it's all good. Talk to soon, Nikki

Tuesday, January 3, 2006 6:49 PM CST

I think Rotavirus is finally out of our house. We ALL ended up getting it. It was horrible! Puking and Pooping everywhere by everyone, (sorry for the graphics)it was nasty! She had a lot of seizures on Friday too. I think because she just pooped out all the meds as soon as they went in. All three of us were in bed all day Saturday and Sunday. Monday we all showered and then mom did TONS of laundry! I don't wish that on anyone. I'm glad it never got to the point of dehydration, that would've been a hospital stay for Sky. Today Mikaela stayed home from school because of a bad cold. She was really tired, coughing, and sneezy/runny nose. She'll go back to school tomorrow. Sky is getting cranky in the evening, I think she needs her nap that she's been avoiding lately. Hopefully with school back in maybe she'll get back on a schedule and nap some, so she's not so crank and tired in the evening. Thanks for checking in on Sky. Nikki

Thursday, December 29, 2005 5:29 PM CST

I'm afraid not so good news now. She now has Rotavirus. She is pooping non-stop. And it has this horrible smell. She can't go to school/daycare until she is diarrhea free for 24 hours. It's highly contagious, can last up to 9 days, and can cause severe dehydration requiring hospitilization. Hopefully I can control it and just keep giving her pedialyte to fight off dehydration.
I'm sick too, congested. Hopefully we can stay out of the hospital, and her poor butt is so red, she cries everytime she goes, which is a lot. Hopefully everyone had a good Christmas, and has a Happy New Year.
Nikki

Thursday, December 22, 2005 7:43 PM CST

I think I finally have some good news. Sky is just about back to herself. She's so much happier. I held a few of her doses, per docs orders, her level was high, and finally she's back! She's still not quite as happy as she was pre-phenobarb, but much better, some days are better than others. Her motor control is just about back too. She can pretty much on her own again. She has had a few, real quick seizures, nothing that i'm worried about. So, I think we're finally getting back to whatever "normal" is. I hope everyone has a good christmas.
Nikki, Mikaela, and Skylar B

Saturday, December 17, 2005 6:02 PM CST

Skylar is still not doing very good, she�s very cranky a lot, and still very sleepy. I got bloodwork done on her on Wednesday, and not to my surprise, her levels were high! Her phenobarb level was too high, and her ammonia and liver levels are creeping up again. Great! So we cut her phenobarb dose in half and see if that helps but probably won�t notice a difference for like 10 days, that stinks. Dr. Nagel knew she was having a hard time and he know how bad I don�t like this med, so on Thursday when he wasn�t there he called me at work just to see how she was, and her levels, I was shocked and impressed. I�m glad he cares and he does listen to me. I hope she can come off this med soon, I understand seizures are bad, but he doesn�t live with her either, and he knows but you can�t just take a kid off a med like that so I just have to try to wait it out a little. I hope it gets better sooner rather than later. She also has some sort of fungal infection on the back of her head, Yeah, like we needed another thing. I don�t know what caused it but I do know to get rid of it she should be on two months worth of antibiotics, but it has bad side effects, so we have to wait on that. In the mean time I can try dandruff shampoo to try to stop it from spreading and making her hair FALL out! Can you believe that, her hair might fall out?

Well I do have good news. My work gave me a Christmas card because they knew how hard of a year it had been, and skylar hasn�t been very healthy, when I opened it, it was full of CASH! I knew I had angels looking out for me somewhere, who knew they were that close. I will never forget that!

I know I talk about skylar being cranky and sleepy and out of it and some might be thinking just deal with it, it�s better than seizures, right. Well I want to try to explain. She can hardly sit up, she doesn�t hardly smile or laugh, her eye contact is diminished, her hands are wringing like crazy and always in her mouth again with a sore on her chin, she�s disinterested in everything, school and daycare can hardly keep her awake, and me and mikaela are pulling our hair out trying to keep her happy when she�s home. She�s so unhappy at home; I just don�t get it. She�s not cranky anywhere but at home. She doesn�t want to sit in her chair anymore; she is just not the same child. I want to cry writing this. It doesn�t seem I can stress to anyone how different she is. It kills me to see her like this! Before the bad seizures two weeks ago she could sit without hardly any problems, she was reaching for things, she was so happy! She laughed and smiled all the time; she was such a joy! She would have seizure every now and then, but I could deal with that, I can deal with her having a bad day every now and then, but EVERYDAY, what kind of life is this. She can�t keep on going like this. I think I might forward this to her doc so he can read how serious I am about this. I think he knows. But just to make sure. Thanks for checking in, sign the guest book. Nikki

Monday, December 12, 2005 5:57 PM CST

No More Seizures. That's a plus. But, she's not herself. She's angry, sad, crying, sleepy, agitated, frustrated, out of it, floppy, drooling like crazy. She's so not herself at all. I'm taking her to see Dr. Nagel tomorrow morning and talk to him about this. It has to be her new med. It's not worth her acting like this. W have to try something else. I'd rather deal with a few seizures than have her like this. She's not this bad at school, she's generally on th ehappy side at school, but they said she is more sleepy. As soon as she gets home she's crying till she falls asleep. Usually not sleeping very long and waking up crying again. It's so depressing to watch her go through this. I want her to have good quality of life, and this is not. Hopefully I'll find out more tomorrow. Thanks for checking in.
Nikki

Saturday, December 3, 2005 7:57 PM CST

I wish I had good news, unfortunately I don't. Wednesday I left work to go pick her up from school because they had called and said she had a few seizures, expected, she had them the night before, and that she was really out of it, flushed, wouldn't smile or sit up. So mother's instinct I went and got her. She continued to seize, tonic ones, like usual. Lat one at three, slept for a while and woke up reall ahppy. Good! Or so I thought. Six she had two whole body shakin, rockin and rollin seizures. She fell asleep. Okay sleep it off. Well she did till 900, woke up super happy, even let her stay up late while she was so happy. Well 1100 or so she started again, rockin and rollin, but they didn't stop at 2, she had at least ten throughout the night, soaked her pillow with drool, I mean soaked. Well probably should've taken her to ER but with another child and the middle of the night it's hard. I knew Sky was OK not very good, but her lips turned blue. So I watched her very closely that night. Toook Mikaela to school, left message for nurse at nagel office and she called him and he wants her admitted, off to the er. We get there at 10, of course no more seizures, at 3 I say, I have to go get my daughter from school, someone please watch her i'll be back as quick as I can. Still hadn't decided what exactly we were doing. Came back with Kaela, now she's in the hallway in a bed, waiting for room up on the floor. Nagel's going ot admit and start phenobarb, yeah. So we get to the floor, five o'clock. No bed yet, so just hanging out. Nagel comes in and sees her, says they gave phenobarb in the ER and we'll keep her on that. NO they did not give it to her in ER so nurse has to get that. She got her med. I took Mikaela to my mom's house to spend the night, stayed a little, did homework with K. Went back to hospital, she's pretty zoney, and has been since the seizures. They give rest of home meds and shes' out. I went home to sleep, I had to, i had been up most the night before watching her, in the er all freakin day, slept like a baby. Took mikaela to school in morning, went back to hospital, she's so sleepy. She's so out of it she's drooling like crazy, if she tries to swallow it she chokes, and her breathing is shallow, side effects of phenobarb, why he wanted her in hospital. Well she stays awake but really out of it, perks up here in ther with a smile and a yell. She gets better like that throughout the day, even got her to eat a couple bites of fries and jello. So if I'm okay she can go home. YES, please. We leave around five. No seizures since! She's so sleepy, satayed kinda zoney all night and today, she slept, slept all day till about maybe 5, and woke up but just layed there really. Nagel said she's gonna be like this for a few days. I hope no longer than that, what kind of life is this, she's so out of it. We'll see, got trust the doc. We're home, mom's exhausted, fast food today, mom's not cooking. Need to go to bed. Thanks for checking on us.
Nikki

December 6
HAPPY BIRTHDAY!!
SKYLAR IS 6 TODAY!!

Wednesday, November 30, 2005 6:48 PM CST

Well plans changed for her birthday. I think we might just go to someone's house and have it. Talking to my mom I realized yeah she does like the characters but a lot of times she's upset by the time we leave. I don't know if it's too stimulating, if it's the lights, or most of the time she's stuck in her wheelchair and maybe not having as much fun as I thought she was. So it makes sense now that I think about it. Plus it will be cheaper at someone's house rather than at major magics.
Well today has been a pretty crappy day. She had a few seizures last night and woke up really out of it. I should've known then. Well I went to work late because of it, hopefully to give her time to recooperate. Well that didn't work, I think i was at work a whole 20 minutes and school called, she had two seizures and was really out of it, wouldn't sit up or smile, or anything. So I took her home. Good thing I did because she continued to have seizures all day. I thought she was better, she didn't have any seizure from about 3-6 or 7, then she had two really bad ones, shaking all over, drooling, turning blue, it was scary. She's just laying there now, pretty out of it, so it might be another day at home tomorrow, but we'll see how she wakes up in the morning, and how the rest of the night goes. She's acting like she wants to have a seizure, i don't really know how to explain it, i can just tell. Well I'll keep ya posted, thanks for checking on us.
nikki

Monday, November 28, 2005 7:00 PM CST

Sky is doing pretty good. She's cranky sometimes, a little more than usual. Hopefully it's just a side effect of the ammonia or liver levels and it will get better as the levels come down. I'll have her checked again Friday and see what they look like. Skylar will be 6 in ONE week! We will probably be going to Major Magics' on Saturday, usually around 2, for her birthday. Anyone reading who' local is more than welcome to come. She loves the animated singers, they're not the greatest, but she likes them. Other than a little cranks and sleepy she's good. It's not too bad, just hopefully it doesn't get worse. She's becoming such a big girl. She loves to sit with Mikaela and play barbies or school or watch movies or tv, and she really gets into it. Even if she can't do much, I think she's participating in her own way, she loves to be right there by her sis playing. It's so neat to see. She's supposed to be getting new stuff for her wheelchair, it's suposed to be in around thanksgiving, so I'll have to check, I haven't heard anything. Hopefull it's here soon. I also want to see about getting a special needs stroller. I think it will be a lot easier, especially to go to the park or things like that, the wheelchair is not that great outside. We'll see. thanks for checking on her, and SIGN her guestbook, Nikki.

Monday, November 21, 2005 4:59 PM CST

Sky had bloodwork friday and her liver enzymes are almost normal, YEAH! So it was the Dilantin all along. Her amonia level is still high, it came down a little but not a lot, so i have to decrease her depakote over the next two week and get levels done again and see what they look like. I'm so amazed she can survive with only two seizure meds in her system, and now the one keeps getting decreased and she's doing good, 2-3 seizures in the last week which is pretty good for her. Plus I think her body has to adjust to the meds being decreased too so I'll wait it out a little and see what happens. She's been a little sleepy which the high ammonia levels can cause which is why he's definetly going down on the depakote and see what happens. She has no school again for a week, so Tuesday and Wednesday she'll go to PPc, her special daycare and Thursday is Turkey Day, and Friday mom has off so we'll be lounging at home. She made a Turkey on paper today at daycare, it's so cute, it's going on the fridge. Today she cried for a while just a little bit ago, I'm not sure why, but after I held her for a while she was happy again. I'm trying to think of good ideas for birthday and christmas presents, I have some so far. But I need more. Oh, and Mikaela is TOP in her class, her teacher says she's doing so good, I'm so PROUD of her.

Tuesday, November 15, 2005 5:00 PM CST

Skylar is doing better. She had a really bad night on Sunday. She had tons of seizures again. I think it was from holding her doses on friday and saturday morning. The seizures she had on sunday were different, she was shaking all over the place. I freaked me out a little. Well like dr nagel said her depakote level was high, and her liver was still high but not quite as high as it was, and her ammonia level was high. I guess depakote can cause that. So i have to take her for more bloodwork on wednesday to look at her levels again after he decreased her dose. So i guess we'll see. She's happy today and yesterday she was too except for being really sleepy for the first part of the day. So i'll keep you posted.

Friday, November 11, 2005 5:17 PM CST

Yesterday and Today Skylar has been really sleepy. I thought she was trying to have a seizure. She was just kind of staring and had her arm out to the side. When she has a seizure she turns her head to the left, her mouth pulls to the left, her arm shoots to the left and her whole body is stiff and makes a weird sound. Also her eyes are either real big or fluttering. Today her eyes were real bigand her arm was to the left. I could not get her to smile at all and was really out of it. I mentioned it to Dr. Nagel, I wanted to see if he was around this weekend just in case, he thinks that with her dilantin out of her system that now her Depakote has nothing to interact with it and maybe it's too high. SO, we went and got blood work done, and we have to hold the night and morning dose and see if that helps. She seems a little better tonight. Still sleepy but I can get her to smile a little at least. She's complete opposite from a couple days ago when she was so happy and giddy to almost no emotion today.
I also noticed little bruises on her forearm today. Thinking, I'm pretty sure they're bite marks. I've noticed that she bites her shirts more right in that very spot, so I'm sure she's biting her arm too. Great another thing to worry about. I hope it doesn't get too bad. Well I'm getting in the shower, I think I might go to a friend's house tonight after Sky goes to sleep, get out a little.
Sign the guestbook.

Tuesday, November 8, 2005 8:03 PM CST

Okay, so Sunday was a horrible day! She had tons, I mean probably 100 or so seizures, horrible day! Probably should've taken her to hospital, but I hate going, I just waited it out, and it was for the best. She woke up Monday morning like I've never seen her. She is so funny, it's almost scary. She giggles, belly laughs, chuckles, it's hilarious! She screams, yells, babbles like crazy! It's so neat to see. I don't want to get too excited, but it's just awesome! I think her VNS has a lot to do with it, three weeks ago when she got it increased I started seeing a big personality difference. But now since the dilantin has been discontinued, she is so funny! I just can't say enough about it, it's so great to see her like this. She is so happy. Okay I'm gonna stop now, I don't want to jinx anything. Keep you posted. Nikki

Sunday, November 6, 2005 11:40 AM CST

Well sky's liver enzymes are checked by bloodwork everytime they check the level of seizure drugs in her blood. A lot of meds are processed through the liver so they always check those with seizure levels to make sure it's not being affected. Well like I said Sky's are way high. So friday they stopped, just up and stopped her dilantin. Doc thinks maybe that could be causing it. Well I'm starting to see the reprecussions from that. She's had 4 pretty hard seizures since stopping dilantin. Three of them this morning. She's kind of out of it. She spent the night at her mamma and pappa's last night and had a blast. Her pappa got a lot of good pictures of her so I think I'll put some on her website. She's been pretty happy and perky, you'd hardly know anything was going on, until she has a seizure, they've been getting harder and longer. This morning Sky woke up at 4 am for mamma! Glad it wasn't mom! But she was very happy when she woke up. Tommorrow she has her ultrasound, keep your fingers crossed everythings okay and taking away this med does the trick. Just hopefully the seizures don't get too bad. Nikki

Friday, November 4, 2005 7:16 PM CST

So Sky is not doing that good. She's been kinda of sick off and on all week. And now I found out her iver enzymes are way too high. Her's is 131 and the normal high is 31, so way too high. She has to have more bloodwork done, and she is going to have a liver and gall bladder ultrasound on Monday. Her Doc also stopped one of her seizure meds as it could be causing it to be high because it's processed through her liver. So I hope the seizures don't get real bad now. So I'm keeping an extra close eye on her. Hopefuly it's just the med, she can live without it without seizures and she'll be fine, I hope. We'll see. I'll update when I know more. Sign the guestbook.

Sunday, October 30, 2005 5:56 PM CST

This week has not been very good. Sky is still sick. Still coughing and very mucousy, it's really gross. No seizures in a couple days, so at least that's good. We did go to a fall festival with Skylar's friend Amber and her family. Mikaela loved it. Skylar enjoyed it for the most part, she played a couple games and she enjoyed watching the cake walk. She wasn't "happy" like she usually is. She's still just kind of "blah", I don't know how else to describe it. When I took her to the doctor on Tuesday she looked at her labs from Monday and said her liver enzymes are getting high so Dr nagel has to look at that and see if it could be from her meds. We'll be going trick-or-treating tommorrow so I'll get pictures. Skylar is a duck, a big fluffy one. Mikaela is an angel, at least she can be one day in her life, lol. Nikki

Wednesday, October 26, 2005 11:38 AM CDT

well back to sky being sick. She's got a bad cough, stuffy nose and today she's got a low grade fever today. She;s miserable, and now mommy's missed two days of work, and i'm already behind on bills. i hope something turns around for us soon. Of course she;s having more seizures now that's shes sick too.
oh on a good note mikaela and sky helped mom clean and carve the pumpkin and sky got her hands all gooey and loved it! i got pictures, i'll put them up when i get them developed.
nikki

Monday, October 24, 2005 6:25 PM CDT

Well since sky got her vns turned up she has been so happy alert, and giggly! It's so great. She was pretty sleepy over the weekend though. I had her drug levels checked this morning and hopefully i get the results tomorrow and make sure they're not too high making her sleepy. Everyone has been commenting on how happy and alert she's been. Her bus driver even said something today. I hate to talk about it too much because it always seems to backfire, but I can't help it, it's so great to see. She had one seizure over the weekend, a little longer than usual but not too bad. She was at her grandparents on friday night and they always tire her out too, but she has a blast. Saturday was when she had the seizure and maybe she was just exhausted. We'll see tomorrow when I get her lab results. Hopefully things continue like this for a while, I hope. She has been coughing a little too much tonight, I hope it's nothing starting and its just the weather change, cross your fingers.
Nikki

Wednesday, October 19, 2005 4:34 PM CDT

Well I think we found out why sky has been gagging and throwing up. Her Depakene! Her GI doc and I figured it out. She only gags and throws up on her medicine. Last night and this morning she had the sprinkles instead of liquid and no gagging or throwing up, YEAH! Hopefully it stays like this and it was an easy fix. She is still so happy, I love it. Thanks for checking in.
Nikki

Monday, October 17, 2005 8:31 PM CDT

Skylar is doing so much better. Dr nagel increased her vns on friday and so far i think it made a huge difference, only one small seziure since. I'm starting to wonder if her meds are affecting her belly and making her want to throw up because she tolerates the pediasure pretty well, but meds is when she gags and acts like shes gonna throw up, wich she has three times now. we see the gi doc in the morning so hopefully he will have some answers for me. I've also been reading a lot about gall bladder issues with girls with RS so I think I'll ask him about that too. She has been so happy since friday, it's so fun. I hate to put her to bed cuz she's just so giggly and happy. Although she does have pretty bad diarrhea from her antibiotics, so I'm fighting that too. But she's in great spirits, yeah.
Talk to ya soon. Nikki
Oh and don't forget, October is Rett Syndrome Awareness Month. Wear your purple, drink your tea, and sign Sky's guestbook!

Wednesday, October 12, 2005 2:57 PM CDT

Well Skylar is still gagging, especially in the morning and when I give her her meds. I still think maybe it's more reflux than sinus related, but no one else seems to think so, so I have to do what they say. She has been having a little more seizures than normal lately. She was taken off of one of her meds and she's starting to have them right after she falls asleep again. She use to always have them at that time, I was told because of the shift in brain activity from awayke to asleep is so different that's what can cause her to have more seizures at that time. Since she was taken off of her mysoline they're coming back at that time. but nothing too bad yet so hopefully the other meds will take over what the mysoline was doing and she'll be fine (fingers crossed). We see the GI doc next week and hopefully he can help with the sinus/reflux issues. Hopefully things smooth out for her soon, and I won't have much to write.
Nikki

Monday, October 10, 2005 5:53 PM CDT

Things haven't been too great. Skylar's still been doing her choking gagging stuff, and yesterday she threw up twice! She's not supposed to do that! She had a fundoplication when she had her g-tube two years ago and hasn't thrown up since. This sinus drainage is getting ridiculous and causing a lot of problems. Today we saw dr collns and he started her on antibiotic number three to see how it helps. We see the GI doctor next week and he'll probably do an upper GI to see if her fundo has come undone from all the gagging. God I hope not. She hasnt had much food today, I'm nervous about giving it to her, I'm afraind she'll gag and throw up, and make the fundo problem worse, but also she can't get dehydrated. She's also somewhat constipated too, but the new antibiotics i'm sure will help that. She'll be back to school tomorrow I hope. Last night I didn't hook her up to her night feeds because i was scared, but i will tonight and see how she does. She just doesnt seem quite herself, although right now she's giggling at Mikaela so she's somewhat herself. Will update soon. Nikki

Thursday, October 6, 2005 5:10 PM CDT

Skylar's been doing really good on the bus now. I think she likes it now, she's usually happy when waiting in the morning, and smiling when she gets off in the afternoon. Yesterday her bus was running late bringing her home, and when they got here they said they had been in an accident! Luckily they were just barely bumped and they hardly felt it. Skylar was actually in a really great mood yesterday, the happiest she's been in a while. I even put her to bed later because i loved seeing her so happy. Well we're gonn try and cut away one of her seizure meds again, keep your fingers crossed. Last attempt she wound up in the hospital with seizures. How the other three meds and VNS can't stand alone I'll never understand. Hopefully this tiime it will be successful. She's still on antibiotics and still pretty phlegmy, I hope that goes away soon. She even got her robinul (med for secretions) increased and so far thats not helped. Skylar is supposed to get home oxygen for just in case when the seizures get bad and she's turning blue one me. Also it seems to perk her up more after a seizure, so I have this little machine that just hooks to her finger to see if her oxygen goes low while she's sleeping at night. We're going to do it tonight so hopefully the results don't scare me. I 'm always afraid of something like that. Last night she had 2 seizures, thats the first one in almost a week I beleive. I'm so used to them I forget to keep track when she's not having them, always used to tracking when she does. Shes having more trouble holding her head up, shes always got it hanging to the side or hanging forward, like she can't pick it up. Her therapist is going to try and get soft neck collar to at least help when shes on the bus. Well enough for now, thanks for checking on Skylar.
nikki

Friday, September 30, 2005 6:26 PM CDT

Sky hasn't been that great. She's been sick for a while with sinus issues and coughing, she's getting a little better but she's not herself. She's not very happy or perky. She can be pretty lethargic at times. She's been to her pediatrician twice this week and when we went today she thought she looked much better and maybe this illness is just taking more out of her than usual. Dr nagel also is going to back off one of her meds and see if that helps the sleepiness. Hopefully things get better soon for her. No seizures since Monday, yeah! She also got blood work done and her seizure levels are fine but her white count was high, sign of infection. She also tested positive for having an epstein barr virus in the past, what exactly that means i'm not sure, but i guess she's had it in the past thats it. Mom's been sick too and on antibiotics and off work monday and tuesday. Hopefully we all get better soon. On a better note mikaela got report from school on how she's doing and she's doing great in everything, i'm so glad!

Saturday, September 24, 2005 3:06 PM CDT

I have to tell you what Sky did yesterday! I took her to her grandparents to spend the night and I always stay for a couple minutes and talk, well Mikaela decided mamma and pappa needed lipstick on, so she put lipstick on both of them and i was holding sky to say bye, and i turned her and said look at pappa with lipstick on and she giggled so hard so on que, it was so cute. Thing like that just reinforce what i already know, she knows whats going on.

She's getting better everyday, today was the first morning she was not gagging when she woke up. Although she's very tired and cranky today, I have to get her levels checked of her seizure meds pretty soon and see if that's a problem. Hopefully she only needs an adjustment of meds and its not a sign of anything else.

Monday, September 19, 2005 4:59 PM CDT

Skylar's getting better, she's still congested but doing much better. She had a bad day last week with lots of seizures but sh'es been good since, hopefully it stays. She's doing really good in school, she just has better and better days with the bus and school. And mommy loves getting off at 3:00 and getting both girls after school. I got to go to the grocery store, called a doctors office, and got skylars glasses fixed and ate dinner all by 6:00, I love it.
Nikki

Saturday, September 10, 2005 3:38 PM CDT

Sky has been sick, and I've been out of work the last two days. She's had a fever as high as 103.5, coughing, and sleeping a lot. It started wednesday just with gagging a lot. She's better today, no fever, still a little sleepy and coughing. She's been put on aerosols and antibiotics just in case but they can't find anything wrong, of course, so just doing my best to help her. No seizures through all this, luckily. She'll go back to school on monday and mom will go back to work and hopefully it was nothing that will get passed on to any of us.

Friday, September 2, 2005 6:06 PM CDT

Well, the knock on wood didn't work, sky has had 2-3 seizures everyday since then, i think 3-4 days in a row now. They're hard ones too, and knock her out for a while, we have to get levels tomorrow.
Skylar also rode the bus the first time this year. This morning the bus driver was never notified she was on his list, so they had to send a back up bus that didnt come til 920 when school starts at 900 and i had to be to work at 900
But she made it finally. Then she got brought home today at 420 after getting out of school at 250, she was crying like crazy and soaked from tears when she got off the bus, and they said "she was pretty fitful the whole ride" great thats what I wanted to hear. Well, I'm gonna give it a couple days and see how she handles it. It will save me so much money and time if i don't have to drive out to her school, so I really hope it works. She fell asleep carrying her in the house, that quick, so maybe she was over tired and will be fine from now on, I hope.

Tuesday, August 30, 2005 4:57 PM CDT

Skylar had her first day of Kindergarten today!
She was very excited to be there, and mommy is
excited about her teacher. She has taught 4 or 5
other Rett girls and has even gone to conferences
and is really excited to have Sky. Skylar should start
riding the bus tomorrow, hopefully it's better this year.
No seizures in two days (knock on wood). Hopefully med increase is kicking in. She's doing much better sitting, and not falling so hard now, actually catching herself and letting down slowly, thats an improvement. Mikaela started he rnew school yesterday and seems to like it, hopefully she stays feeling that way. We go see the orthopedic surgeon next week, just to check on her, we see him every six months. Well thats it from our neck of the woods, don't forget to sign the guestbook.

Sunday, August 28, 2005 5:15 PM CDT

still doing about the same, still having seizures, playing with her meds some more. Today she had a seizure while I was in the kitchen and when I walked into the living room, her lips were purple and she wasnt breathing, she finally came out of it and slept for 2 hours, and she's still kind of out of it, it really took a toll on her. I also read an article that with Skylars particular mutation of rett her life expectancy is shorter! What a blow! Not what I needed to hear, reality is harsh. Well, Kaela's off to her first day of school tomorrow at her new school, she's actually kind of excited, for once. We'll see.

Saturday, August 20, 2005 10:57 AM CDT

Well this week she has only had one seizure, and that was due to a missed dose, (mommys fault). Yeah!!! Doing really good, trying to sit up more and more, babbling a lot, yelling, laughing, pretty much happy go lucky. Went to the dentist this week and no cavities but she needs her teeth brushed better, easier said than done, but were going to try. This week we see Julie Miller, the physical medicine doctor, and maybe she has some ideas on her neck and leaning to the left all the time. Will keep you posted.
Nikki

Monday, August 15, 2005 7:35 PM CDT

Still doing pretty good. Two seizures everyday since Wednesday, except today, NONE! Hopefully things are settling and we wont have a scare like that again anytime soon. Had therapy today and was really happy and did pretty good. Swinging to help with balance and practice standing, no crying. She's been a pretty happy girl (knock on wood) and pretty much back to normal. Got to see her friend amber today at daycare and had a good day there too. Hopefully she stays this way and we can try that new formula again, she had gained a pound pretty quickly before all the gagging and diarrhea started. Hopefully we can go back on it. Hope everyone else is good. Nikki

Friday, August 12, 2005 5:55 PM CDT

Thursday and Friday definetly better days, not completely back to normal but much better. Some zoning times, but much fewer, and has had 2 mini seizures each day the past three days. Everything fine at pediatrician office. At neuro appt increased vagal nerve stimulator off time to 3 mins, then it sends current for 30 secs, off 3 mins, etc. She got a little cranky for a while today, but not horrible and she's still not holding her head up very well, but neuro says thats to be expected with the bout of seizures she's had. So not perfect, but much better than she was. Thanks for checking in.
Nikki

Wednesday, August 10, 2005 6:43 PM CDT

Well today is a little better. Only 2 seizures today. Slept for 3 hours at daycare. Was pretty out of it this morning, doing a lot of "zoning" lately which i don't know what thats a ll about. We're going to switch her formulas back at least for 7-10 days and see how she does from there If the choking/gagging stuff stops and the green poop stops then we'll re-challeng the new formula, if it comes back, we know she cant have that formula. If not good cuz she has already gained weight on it and hopefully what she has is just a virus. Were going to her pediatrician tomorrow to make sure she doesnt have a sinus infection. And we're going to nagel on friday to talk about seizures and meds and this zoining out stuff. Hopefully I'll have more and better stuff to write after that.

Tuesday, August 9, 2005 6:58 PM CDT

Things are still not very good. She had a bad seizure yesterday and last night had this weird choking/gagging kind of episode. Was told could be reflux could be new kind of seizure since she zones right before it and sleeps after. Yeah! Then today was worse, had a 2 min seizure thsi morning followed by at least 7 more short ones, got diastat and labwork, levels are low still, so add more meds and did two episodes of thsi choking/gagging at daycare. I'm so frustrated. I don't know if she's getting sick, if its the new formula or if it's seizures. I just have a bad feeling about this.

Sunday, August 7, 2005 8:32 AM CDT

Well, Skylar was admitted to the hospital on thursdaywith bad seizures. She usually has tonic seizures, where just her arms flex to the side and her eyes flutter, and her body stiffens. This time she had ones where her whole body convulsed, very scary. So off to the ER we went, and she was admitted. She had a few more tonic seizures,well like 15, which usuall we get to the hospital and she acts like she's cured. We were there Thursady early afternoon till Saturday at 1130. She's doing better, she's now on 4 seizure meds along with her VNS. I think she had the seizures because we were trying to wean one of her meds, slowly, but I guess it affected her. She's doing good so far since we got home with only one tonic seizure. Hopefully we don't have to stay on all these meds. It's so frustrating, she's a littl eon the cranky side and more sleepy too. I hope she comes out of this soon. Thanks, Nikki.

Tuesday, August 2, 2005 6:58 PM CDT

Monday Sky went ot the GI doc Dr. Bobo, she hasn't gained any weight since he saw her a year ago, but she's grown two inches. So he's going to put her on a new formula with more calories to help her gain weight. He also said to push her meds thru with juice instead of water to help with her constipation. Then that night her g-tube came out and i couldnt get it back in, then I broke it, luckily, i had an extra one here to put in and she cried so much, it was so heartbreaking. She also had a seizure at daycare yesterday too, so monday was not a good day for us. Today she's happy, a little constipated so i'll give a little extra miralax tonight. I got a tumbleforms chair and a communication board loaned to me from equipped kids, can't wait to try them out, just got them today so we'll see.
Ona better note, mommy got an employee performance award/employee of the month today, so that was a good end to a hectic day. I took a bunch of pictures recently so I'll be updating the pictures soon.
Nikki

Wednesday, July 27, 2005 6:09 PM CDT

Skylar is doing pretty good. She had a really bad day on Monday. She had seizures all day long, I used her magnet for her VNS and no help. So i gave her Diastat (rectal valium) and it still didnt stop them. And of course Dr Nagel is on vacation this week. But i'm fine with that, we're starting to wean off one of her meds and i'm very excited to do so. I'd love to see one less med on board. Yes she's still seizing, but one less med causing side effects and same amount of seizres (hopefully) will be just fine with me. I called equippped kids to borrow a tumbleforms chair and a gait trainer to help sky and he said he has them but of course they're only open on monday afternoons so maybe we'll skip therapy and go there instead to pick up the items. I'm very excited about having a chair that she can safely sit in in the house. She's very happy and vocal and trying so hard to stay sitting up. I feel so bad when she fall, almost like she doesnt even know its coming, she just tries so hard.

Wednesday, July 20, 2005 6:55 PM CDT

Skylar was really sleepy yesterday,
she slept almost all day, got perky in
the evening. Dr. Nagel had us hold a
dose of depakote and see if that helps
she is better today, but she felt really
warm this morning, of course couldnlt find
the thermometer so i just gaver some motrin.
She's much better this evening. She's having
extremely quick seizures a couple times a day,
I hope it's just a stage and they don't start
coming back hard again. Her therapist is going
to try to get medicaid to pay for a communication
device and a tumble forms chair. The chair is just
a small chair that leans back and has a non-penetrating
cover and whells, so she cna sit at home without mom worrying of her falling off hte couch or even
hitting her head hard on the floor. Saturday we'll
be driving almost four hours to Cambridge OH for
and Ohio Rett Picnic, another mom set up. I'm
really looking forward to going, I'm
hoping a friend from work will want to spend
her saturday with a bunch of kids so i don't have
to drive alone. If we stay too late we migh get a
hotel room and go swimming, we'll see.
thanks for checking in.

Saturday, July 16, 2005 11:08 AM CDT

Skylar is happier now, she still wakes up a little
Mad somedays, but it�s much better
We saw Dr Nagel Friday and finally we�re
Going to get rid of one of her meds, slowly
She�s still having seizures, but if I can get
Rid of one of the meds and she doesn�t have
Anymore seizures, I�m happy. Any of skylar�s
Special friends need to go to songs of love.com
They make cd�s personalized for the kids,
Skylar has one and she just lights up
When she listens to it, its really neat
I can tell skylar�s paying attention more,
Like when she�s sitting and starting to slump
I�ll say sit up skylar, and she usually tries
Her best to sit back up, she also seems
To try to use her right hand more, she
Swings it a lot as if to hit/grab something,
I realy think the vns is �waking� her up more,
And getting rid of a med will help even
More. She is having more breath
Holding episodes, and her lips turn
Purple, and her seizure on Wednesday
Was a very hard one and she turned
Purple, I have to keep an eye on that
Hopefully we can go swimming again soon,
Sky just loves the water and being outside,
Just not too hot

Saturday, July 9, 2005 9:30 AM CDT

Skylar has been pretty cranky this week and waking up a lot at night,
So on Thursday I took her to the pediatrician, and of course she
Couldn�t find anything wrong with her. So Dr. Nagel had us
Do some labwork and that came back fine too, so she is
Just a mystery as always, although she did have a big poop
On Thursday so maybe she was just overly constipated.
She�s been much happier Thursday and Friday and so far today
She�s happy watching her favorite move Shrek! We haven�t
Watched it in a while and she�s sitting there watching the whole
Thing. Oh and in case I forgot to write, Skylar had her hair cut a while back
And just got it cut again, and she just loves it, whenever someone
Says anything about her hair she smiles and laughs, I know
She loves it; it�s real short, just below her ears. She�s still pretty off
Balance so I�m going to look online to find a seating system thing
For her at home and also a communication device to start
Trying to ask her choices at home, and at therapy on Monday
Hopefully we can get the ball rolling on ordering something.
Skylar got to stay up late last night, Mommy had some friends, and
Aunt big butt over sitting outside and sky stayed up till 10:30 or 11:00
And was happy the whole time. Woke up about 8 this morning. She�s
Just now starting to get cranky so we�ll get a binky and relax and possibly
Take and early nap before we do anything today, thanks for checking
In on us.

Saturday, July 9, 2005 9:30 AM CDT

Wednesday, July 6, 2005 9:51 PM CDT

Well Sky is still doing good. Still a couple seizures, but I can handle that. She's been a little more on the cranky side, but she pooped a lot today and was better today, so maybe she was just constipated. She's been leaning a lot and off balance again. Usually its her seizures, she's only had a couple and theyre not bad but they must be enough to throw her off. i feel so bad, she tries so hard to sit up and stay up but she falls, and falls hard and she'll hit her head and cry. I feel so bad. She'll fall off the couch, she'll fall sitting on the floor, and no matter where i put pillows of course she misses them. I even had her in the stroller today outside and she leaned so bad then fell back she hit her head on the outside of the stroller and started crying, it's so frustrating. I talked to her therapist about getting a seat in the house that is safe, like the ones she sits in at daycare. Hopefully we can get it quick, but the insurance is never quick about approving anything. I can't be at her side 24/7, i just want somewhere safe she can sit. Oh, and you have to check out Amber Heiss' website, skylars friend, and you'll see her with Skylars ma-maw cutting her hair!

Friday, July 1, 2005 7:50pm est

Well this week has been better for Skylar. Still a few seizures but nothing like it was. I know I keep saying that, but its just amazing, she can go from having 50-100 seizures at a time to just one, or NONE! It's great. Her sitting is a little off again, I think it's due to the seizures she had on saturday. That was the first day she had more than one in a day. One month turned on and only one day where she had more than one seizure. They were happening at least once a week if not twice. She's at her ma-maw and pa-paw's house tonight. She and Mikaela just love it over there. They were in the pool when I left, and they probably still are. Skylar just lights up when she sees her pa-paw. Also at daycare she's sitting up better and reaching for some things, she's really getting a lot more interested in things again. I really can't say enough about her VNS, (knock on wood).

Sunday, June 26, 2005 4:13 PM CDT

Well, Saturday was a bad for Skylar. She woke up just out of it and then started having seizures shortly after. She probably had 20-25 seizures that morning, and no the magnet did not stop them and they kept coming. We were at the PPC walk and roll of all days. I put a blanket down and she laid under a tree, but she kept having them, so we ate and listened to the raffle winner s and left. Once we got home I put her to bed and she slept for 4-5 hours, WOW! She needed that. No more seizures after that. Well she had one this morning but very quick. Friday night she stayed at Aunt BIg Butt's house and she has no air. So i'm not sure if the heat got to her cuz thats where she woke up sautrday morning out of it or it it was just one of her off days. I'll never know. I'm still very impress with her vns, if you remeber she could have up to 75-100 seizure at one time, once or twice a week, shes probaly had 30 snce the implant one month ago. So big improvement for her. Still fighting th sitting, today she banged her head pretty good. Just sitting on the floor and falls and wont stop wringing her hands to stop herself and BAM! She cried so I know it was bad. She's back on the couch all supported, so we'll try sitting again tomorrow.
See Ya
Nikki

Thursday, June 23, 2005 5:47 PM CDT

Hi out there. Skylar is doing good still. Something is a liitle off with her not sure what it is. She has a sore like a blood blister on the inside of her hand thats kinda yucky looking since it's always wet. But it's getting better. Her sitting fluctuates, somedays she's awesome and then some, like the last couple days, she's off. She did have a seizure Friday, Monday, and Tuesday, her usual seizures, and I used the magnet on Tuesday and it didn't work! I was bummed. I still have seen great imrovements since the implant, five seizures in a month is awesome. I'm still dumbfounded how a little 30 pound girl can be on 5 meds and have a vns and still have seizures! I understand but I don't, I suppose I never will. I just hope she continues to do better.
Mikaela is at the calvary YMCA and she's haveing fun, swimming, field trips, games, I wish I could go.
Hope everyone else is good, and enjoying the summer!
Nikki

Saturday, June 18, 2005 12:05 AM CDT

Hello again. Skylar is still doing good. She is just about sitting how she was before the seizures got real bad. She will catch herself now when she falls over. She has had two of her normal seizures and thats it, not in a row, two different days, which is a HUGE improvement for her. Yeah!! She used to have at least once a wek clusters of seizures where she could have up 100 of them, so this is definetly a HUGE improvement. Mikaela is also doing good and is now not as worried about skylar, she was very worried when she would have all those seizures. Hope everyone else is doing good.

Friday, June 10, 2005 7:10 PM CDT

Hi Everyone, Skylars doing great! I'm so glad to write that. The VNS is really working good for her. She has had one very minor seizure less than 5 seconds long since the vns was turned. She's sitting up so much better. I'm so happy! Thanks for checking in with us.

Wednesday, June 1, 2005 5:32 PM CDT

Well my computer was broke so i havent been able to write. Skylar had the VNS surgery on 5/20 and all is well so far. It just got turned on today but no difference. Its set very low and probably wont make a difference for another 2 weeks. Her seizures have been very bad lately. We've been to ther ER and have given Diastat which is rectal valium to stop her seizures.

Thursday, April 28, 2005 7:11 PM CDT

Skylar is doing better, no seizures. She stil is not sitting but i think she's getting a little stronger. She has a breakout of herpes sores on her chin, every time she gets sick or stressed with something she gets these sores, only on her chin. She's been very happy lately, which is a good thing. She's rolling a lot too so she's moving more even though not sitting. We're sending our prayers out to Amber who is having surgery for a g-tube like Skylar today. Hope everything goes good.
nikki

Tuesday, April 19, 2005 5:54 PM CDT

Hello.Well I wish I could write and say everything is great, but unfortunately it's not. Skylar is still having a lot of seizures, even though she did go through a whole 2 weeks with none. They seem to be getting harder and longer, still not over one or 2 minutes, but they're hard. She also has a longer post-ictal state (time after the seizure.) She is out of it longer with shallow breathing and then usually sleeps for a while. She used to be out of it for just a few minutes and then perk back up. She also is not sitting up at all, and barely holding her head up! We saw her geneticist today and he didn't have any answers, no it's not typical to regress again, or have a change at this age, BUT she is, and she's not very typical. Her breathing is also different, she hyperventilates more, not for long periods but just little bits here and there. She holds her breath more too, especially if your trying to listen to see how she's breathing. So lots of seizures this evening and now shes drifting off to sleep with her shallow breathing, laying right next to me at the computer because it worries me. The docs are thinking maybe its meds (she's on 3 seizure meds on top of her other ones) or seizures are causing the motor problems (not sitting up and not holding her head up). Well what do you do, you got to have meds to stop seizures, so if its one of them it s not going to change soon. Although we're proceeding with the paperwork for the VNS (vagal nerve stimulator), I think I expained it previously, So i have that to "look forward to" She also has more constipation problems, could be laying down more not sitting up and letting gravity take over, or seizure meds can block you up too, its a never ending battle, but will win it sooner or later, Thanks for checking in.
Nikki

Tuesday, April 5, 2005 7:01 PM CDT

Hello everyone, sorry i havent wrote in a while. Skylar is not doing grat. She still will not sit up at all. She was having LOTS of seizures, landed us again on 3 meds, with a back up emergency medicine and starting the paperwork on a vagal nerve stimulator. Its surgery where a pacemake type device is implanted which sends messages to the brain to not have seizures. A little more complicated than that but thats the just of it. Shes very happy and wiggly and rolling but not sitting up, cant keep her balance. We're going to see Dr nagel and Dr hopkin this month so hopefully they can give us some answers. see ya soon bye

Tuesday, March 1, 2005 4:58 PM CST

Well things are better, one seizure over weekend, but 5 on wednesday, but better. One bad thing Skylars dad was paroled yesterday, ugh. Hopefully we dont have to deal with him though. Mikaela hasnt been complaining of her belly too much. Skylar is still a little more on the cranky side. She's coming off of one of her seizure meds trileptal, so hopefully that will eliminate one thing to worry about, still on two other seizure meds, primidone and zonegran. Hopefully those work better than the trileptal. We go get labwork soon to check the level of medicine in her system, i'll update you then. bye

Thursday, February 24, 2005 8:09 PM CST

Well I wish I was saying its been a great week but it hasn't. She's still having seizures, and they seem to come more than one at a time. She's also been breathing a little differently lately, not all the time though, I don't know what to make of it. She's still been more cranky again, which i hope she comes out of soon. Mikaela's complaining of a belly ache all the time, I'm wondering if its just how she eats, but her eating habits havent really changed, she's never ate good. They're thinking about a vagal nerve stimulator or maybe the ketogenic diet to help control skylar's seizures. The VNS is surgery where a pacemaker type thing is inserted in her chest with wires to her vagal nerve in her neck that sends electrical impulses to her brain which is to help control seizures. The diet is a high fat high protein diet that puts you in ketosis which can help control seizures, both are a little scary. I'll update you as i know more.
Nikki

Monday, February 14, 2005 8:43 PM CST

Well we've had a better week. Skylar had 3 seizures friday at daycare and 2 on saturday and none since, had went almost a week without one till friday. Skylar was at her grandparents sat. night with her sister and they had a blast, as always. She loooves going over there, she lights up as soon as we walk in the door. Oh, and she waved bye-bye to her friend amber at school on friday! Hope everyone's good. Bye!

Monday, February 7, 2005 8:06 PM CST

Hello everyone! The weekend went pretty good, only 2 seizures. That is better, only 1 sat. and one sun. We are starting a new medicine to hopefully get control over the seizures. That's three seizure meds, hopefully she doesn't get too sleepy. She has been a little more cranky lately, but she is on antibiotics for sinus infection, so maybe that's hurting her tummy a little. Well hopefully that's the most exciting thing going on. Talk to you later! Nikki

Saturday, February 5, 2005 9:07 AM CST

Hi everyone! It's Saturday and so far today is okay. Thursday night Sky started having seizures, first her typical seizures, left arm up and shaking and eyes rolling back. Then she started having whats called grand mal seizures. Her whole body shaking, eyes rolling back and breathing funny making noises. She had three of those right in a row so off to the er we went. Mikaela went to our neighbor lisa's house and spent the night. At the er she had a couple real quick small seizures, which got us in quicker, but no big ones. They gave her iv fluids, warmed, for some reason she felt really cold. Sky just slept the rest of the time. They did a cat scan of her brain, chest x-ray and bloodwork which so far has all come back normal, and of course there's no reason to be found why all the sudden she had these seizures. So far she has not had any more seizures of any kind. Mikaela got really upset this time and was crying, and then told me she had a dream skylar died. I talked to her and tried to explain but i think i'm going to try to get her back to harbor so she can talk to someone and just get reassured skylar will be okay, and if we have to go to the hospital it's for the best so skylar can get better. Well thats what's going on in our life right now, hopefully getting better. Nikki

Wednesday, February 2, 2005 7:37 PM CST

Okay I know I just wrote, but, she just had a seizure. Her seizures are brief, about a minute, her left arm goes up, and her body trembles, with her eyes rolling back in her head. We keep chaging meds and hopefully soon will acheive good control soon!

Wednesday, February 2, 2005 7:11 PM CST

Hello. Today is a pretty good day for Skylar. She ate good, pooped, and no seizures. She was a little cranky when we got home from PPC, but it just took a little TLC and all better.

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