Saturday, February 28, 2009
Reagan was up again twice last night...at almost the exact same times as the night before! I'm beginning to see a pattern and not a good one. She also seems to be waking up from a nightmare or something. She'll be half asleep crying and crying but once I pick her up and she comes to, she's fine and can go back to sleep. But there's no leaving her in her crib when she gets like this because she just escalates. Even if I try to give her a bottle without picking her up, it's like she gets even more frantic. I'm glad that I'm not having to stay up with her after these episodes (1-2 hrs up in the middle of the night like before) but it's still pretty exhausting. And then this afternoon we had a major tummy issue. It all started out with some serious fussing and then next thing I knew she was trying to do some business. I went to go change her diaper thinking she would have a full one, but it was empty. Then she started straining and I got a glimpse at the huge rock she was trying to squeeze out. This is all my fault. Last week, when she was going 1-3 times a day (probably due to teething and not a stomach virus), I stopped her daily dose of Miralax. Bad idea. Horrible. Let me just tell you that will never happen again. She was so miserable...it was like child birth! Poor, poor baby! Many kids with problems (seizures, autism, etc) have issues with constipation. Sometimes it's a result of the medications they take and sometimes it's a result of their underlying condition. We're not quite sure why Reagan has it but even with Miralax she only goes once every few days. The Miralax helps with consistency but not regularity...if you know what I mean. We've tried other things but everything just seems to upset her tummy and make matters worse. So for now, we'll stick with the Miralax, no matter what. We did attempt to go pick up her Lamictal today and BIG surprise the pharmacy has no record of it ever being called in! I have no idea who is to blame, but I've had nothing but problems with this pharmacy so who knows maybe the doctor's office isn't responsible. I guess we'll have to wait until Monday to figure all this out! I'm so sick of incompetence. Meanwhile, please keep Reagan in your prayers!
Friday, February 27, 2009
We had another rough patch last night. Reagan woke up at 2:30am and 4:30am crying. Both times she would not self soothe and I had to pick her up to calm her down. Luckily both times she went back down relatively quickly. I wish that she would just start sleeping through the night again! I could really use some solid consecutive hours of sleep! Today has been a very busy therapy day. She had vision therapy at 11am with her old therapist. She had been on a leave of absence for health reasons but now she's back. She was very impressed by Reagan's improved visual attention and her increased head control. Then we were off across town to OT and feeding therapy. Again, Reagan did such a great job! This may have been her best OT session to date! And her therapist definitely noticed the overall increase in body control. She wants us to continue to work on stretching...Reagan's arms and sides get tight from keeping her arms bent in tight to her body. The more we stretch her arms out straight, theoretically the more likely she will be to straighten them out and not keep them all clenched up! Feeding therapy went well too. She wasn't too keen on chewing today, but she tolerated everything really well...there's a lot of hands in mouth and pulling and stretching on her lips involved, so tolerating is good. Her therapist did notice that her upper right lip is getting more loose, which is something we've been working on (you have to be able to move your lips around easily for feeding and when they are tight, that's not good). She was completely wiped out by the end and fell asleep before I could even feed her. Not surprising, she's never been much of an eater. She took a huge 4hr nap after that...hopefully that won't throw off her sleeping tonight. I did talk to our neurologist's secretary this afternoon and she said that the doctor called in the prescription himself Wed night. So I guess it's just sitting there waiting for us to pick it up! I didn't make it there today, so I guess we'll start it up tomorrow. Please say some extra prayers for her this weekend!
Thursday, February 26, 2009
Reagan has been a feisty one today! Super energetic and talkative, she's such a character! She woke up early but fell back to sleep in my bed (without me in it) and slept until 9:40am! Maybe it was the sleep that pepped her up!?! We went back in to pick up her night splints today. They were reworking them, adding a hinge to the ankle hoping that maybe that will help her to better tolerate them. It's hard to tell if it's going to work. I think she may just be too tight to wear AFOs! They keep saying how "she's a difficult case", but it's frustrating because I think if we would have been able to address these issues right after her casts came off, we wouldn't be having these problems now. She's supposed to wear them while she sleeps at night, but I'm going to try them out on some naps first to see if she can wear them without getting too terribly red! While we were there she was going crazy kicking her legs like a mad woman, she did this a few days ago too, I don't know what it is all about but she just goes crazy! I felt bad for the orthotist trying to put her splints on because she just kept kicking him over and over again! This actually worked to her advantage during physical therapy. She was doing great in the walker. It's amazing how much better her head and trunk control has been lately. I can't help but wonder if it might be a result of getting off of the vigabatrin. And it makes me nervous to add another medciation to the mix. Actually, the doctor had said his nurse would call us today with the prescription but that never happened. I'll put a call in to her tomorrow. The thing is, we may wait to start her on the lamictal. We've seen some definite improvement since taking her off the vigabatrin and although the seizures are still there (especially in the morning)...we may wait a few more days before starting the new medication so that we can get some sort of reliable baseline. We'll see. Please continue to keep her in your prayers.
Wednesday, February 25, 2009
We had another good one last night. Reagan woke up at 3:30am crying, but I just gave her a few sips of her juice and she went back to sleep. She woke one more time about an hour later but she settled herself and slept through til 7:30am. I'm hoping maybe she's getting back into her groove sleepwise...hopefully we won't mess that up with a medication change. I spoke with her neurologist today and Lamictal it is. I think he's just not that comfortable prescribing Rufinamide yet. We're going to start the Lamictal very slowly with one half of a 2mg pill every other day for two weeks (which is important because of the potential side effect of a life threatening rash). After that point we'll increase to half a pill every day for two weeks...yes, very slowly. He said that if everything is going smoothly after the first few increases, we can begin to increase more quickly. She could go up to as much as 5mg a day...which might take years at this rate! Hopefully we won't have to go up to the max dose to see improvement. She's actually been having considerably less seizures since taking her off the vigabatrin. It's irritating to know that she we've had her on this medication for months and it was actually making things worse! I almost hate to make any changes now but less seizures isn't what we're going for...we have to stop them completely!! We also really don't want to see any of the negative side effects, specifically the rash or insomnia. So please say some serious prayers for Reagan! She's been in a great mood today...so talkative and smiley...she's been cracking me up! We did go in this morning to the ophthalmology clinic for her one week post-op where we saw the fellow (instead of the doctor we were supposed to see). She was very happy with the way her eye looked and said that we can begin tapering her off of the steroid drops we've been giving her to prevent inflammation. I was a little irritated that we made the drive up there and still didn't see the doctor we were supposed to see, but I was relieved that we had another person weigh in on her eye. When I got home I looked at it myself and there is still a large gash in her eye (under her lower eye lid so you can't see it unless she's looking up and your looking for it) but most of the redness has gone away and hopefully over time that gash will heal and fill in. I still don't remember seeing anything like this the first time, but it seems like we're the only ones concerned about it, so I hope that's a good thing.
Tuesday, February 24, 2009
Our day started off well enough, Reagan slept from 11pm-6am...this is the longest she's slept in a week...we were thrilled! Then we vacated the house for 3.5hrs while our friend Meghan, who also happens to be our realtor, had a realtor's open house. We're getting a little desperate for some traffic, seeing as our house has been on the market now for almost 90 days and we have not had a single offer. We just need the right buyer. Maybe one of the realtors that came today will know someone who might be interested. Before coming back home I stopped off at the mail box (always the bearer of bad news) to find a bill from our insurance for Reagan's chair. According to this statement, they weren't paying any part of the bill (which for some unknown reason was almost $2000 higher than our quote) because they said that we had already met our yearly max for DME. This is absolutely absurd! This was the first piece of equipment that we had ever gotten for Reagan, which makes it impossible that we could have already met the yearly DME max! And what's even more ridiculous is that before ordering this extremely expensive piece of equipment both myself AND the people at the seating company had already verified multiple times that the insurance was going to pay $2500 toward the cost of the chair!! So frustrating! I'm just so sick of the constant hassles that we have to deal with as parents of special needs kids! Isn't enough that we have children with significant health issues and disabilities?!?! It's just so frustrating. The guy from the seating company is looking into all of this (after I called him in tears) and he said not to worry that they will clear everything up. Again, just so frustrating to have to worry about it. I have enough to worry about. Thanks. Reagan has been more irritable today than yesterday, she went all day yesterday without any dirty diapers but she's had two today. Then tonight she was also running a fever. I think she may have a stomach virus in addition to teething! Poor girl can't catch a break. I did speak to her neurologist this afternoon and he's going to think over Lamictal vs. Rafinamide and call us tomorrow with a game plan (before he leaves the country again). Please pray that he will pick the medication that will do the most to stop her seizures and have the least amount of side effects!
Monday, February 23, 2009
We skipped OT this morning for a trip in to ophthalmology. The clinic itself was not open, but there was a resident working to see emergency cases (although we were not an emergency). He looked at Reagan's eye (and in his expert opinion) said that it looks fine. It doesn't appear overly red or even slightly infected and he said what we were seeing was in fact the incision but that it looked like it was healing well. We're still keeping our appt for Wednesday to see a real doctor (that's what he said, not me)...the doctor that's going to be following Reagan til the other one gets back from maternity leave. But thankfully there doesn't seem to be anything to worry about. Boy am I relieved. I'm still a little puzzled as to what's bothering her and keeping her up most of the night. I don't know if it could be related to her getting off the vigabatrin or not...I put a call in to her neurologist but haven't heard anything back yet. Last night was still pretty rough with Reagan waking up crying only an hour after putting her to bed, but at least she has been in much better spirits today. She's actually been great all day...which is a huge improvement from yesterday. Maybe her tummy feels a little bit better. She did great during PT today, standing like a pro with great head control and spinning a globe toy with her hand. That's something new she's been doing lately. Reaching out and moving things with her hand...like spinning a pinwheel. Below is a video of her with her Valentine's Day monkey that Grandma got her. She loves this thing and lights up every time I turn it on!
Sunday, February 22, 2009
That could describe any one of us lately. No one is getting any sleep. Reagan is still waking up crying many times each night. Mike has a hard time getting back to sleep after she wakes him. Not me...I am out as soon as I hit the pillow but if Reagan so much as makes a peep, I leap up out of bed, up the stairs, and into her room. So we're all exhausted. We're all quite miserable. Tonight even more so. Reagan screamed and cried for a good 2+hrs before we could get her in bed. She's definitely not feeling well. She had three dirty diapers today and another throwing up incident tonight. It's got to be some sort of stomach virus (although she was not irritable at all with the last stomach virus she had). Unfortunately there's not much we can do for that. Just try to keep enough fluids in her (which today she was definitely lacking) and hope that her stomach settles soon. And if that wasn't enough, we're a little concerned about her eye...the one that was operated on last Tuesday. Under her iris it's very red and looks like it has a gauge out of it. I don't know if maybe a stitch has popped out or what but it doesn't look good. I spoke to the doctor on call this afternoon and we're going to take her in tomorrow to have someone look at it (as it's hard to explain over the phone). Hopefully it's nothing...but it does look painful and could be adding to her overall irritability this past week. I know the lack of sleep has definitely added to my irritability. Please keep Reagan in your prayers. We really need her to start feeling better soon. I don't know how many more sleepless nights we are going to survive.
Saturday, February 21, 2009
No rest for the weary. Seriously, I don't know what's up with this girl. I do know that seizures are waking her up at night (seizures are waking us all up at night). She'll wake up fussing and crying and then shortly after she'll have a seizure. It's like she can feel it coming on and it wakes her up. I watched it happen again and again this morning when she was laying beside me. It was so sad because afterward she would finally be able to relax and go back to sleep. So needless to say, the seizures have been pretty bad in the mornings (although there seems to be some definite improvement at night...before midnight anyway). I'm still wondering if Reagan might be battling some sort of virus. She's had those throwing up incidents, low grade fevers here and there (which I always attribute to teething), and then she's also had a substantial increase in dirty diapers (which are normally pretty scarce). She's also been having the screaming, crying fits where you can tell that her tummy is hurting her. It's almost like we've gone back in time...back months ago when our lives were ruled by a super irritable, sleepless, and gassy baby. Those were dark days. But thankfully she hasn't completely reverted back. She still has her good moments during the day where she's just as sweet and cute as can be. And that's what keeps us going. I just pray that she will get over whatever is bothering her soon and get back to her happy, sleeping, sweet self. A good night's sleep would be a start.
Friday, February 20, 2009
Boy, this has been a long week. Reagan is not feeling well and that is definitely reflected in her sleeping. Last night she woke up every hour moaning and groaning. Each time I got up, ran up the stairs and into her room to check on her. The first 4 times she fell back asleep on her own, but the 5th time she was all out crying and I had to pick her up. I brought her downstairs and tried to console her but that wasn't happening. It's so hard to get up multiple times a night, but it's so much harder when Reagan is inconsolable. When she's in a good mood, I almost don't mind getting up with her. But when she's in a rotten mood, it's so much harder to be patient with her especially in the wee hours of the morning! We're wondering if maybe it's related to getting off the vigabatrin. Maybe some sort of withdrawl symptom?? Who knows. Maybe it's just her teeth! She has been foaming at the mouth lately! Either way I sure hope it passes soon. I don't know how much more I can take of this manic behaviour. The moaning and groaning and fussing and whining continues most of the day...I need a vacation!! Hopefully we'll get some rest this weekend. No plans...just rest. Please continue to keep her in your prayers!
Thursday, February 19, 2009
So...Reagan was up again last night. I don't know if it's her eye or her teeth or if she's getting sick, but she just can't seem to get back into a normal sleep pattern. She's just so restless and fussy. Even her naps during the day are falling short. Last night she was up at 3am, luckily she fell right back to sleep after I changed her wet diaper. Poor Mike couldn't fall back to sleep though and laid there awake until it was time for him to go to work. Then Reagan woke up shortly after he left. She had PT and OT back to back today and big surprise she fell asleep toward the end of PT! She did manage to wake up and participate in OT, although it ended with a little meltdown because she was still tired. Then tonight she had another throw-up episode (actually two of them). We went to Bible study and I was feeding her the last half ounce of her bottle and she choked and then threw up all over the place. I assumed it was just reflux. But then later about 30min after I gave her her medicine, she was very irritated so I tried to give her a little more milk, as soon as I put the bottle in her mouth she started choking and threw up again. Ugh. I don't know what's going on with her. Please keep her in your prayers. I didn't mention it with everything going on, but Monday was Reagan's last day of Vigabatrin. I wouldn't say that we've necessarily noticed much of a change since stopping it. The seizures may be slightly decreased, but the ones she's having are fairly intense so it's hard to tell if things have necessarily improved. She's still having way too many in the morning, but at night they vary some nights she'll have a lot and some she'll have very few. Either way I think we're still going to have to add a new medication to the mix...it's just a matter of deciding which one. Her doctor made three suggestions. One is to try Keppra again. She tried it last year (before starting ACTH), but it was only a two week trial and her doctor thinks that we may have not given it a fair shot. The second option is Lamictal. The main issue with Lamictal is that they increase the dose VERY slowly because there is a potentially deadly side effect (a rash) that they have to watch for. And the third option is Rufinamide. It's newly approved by the FDA to treat a particularly difficult to treat seizure disorder Lennox Gastaut. It has a lot of promise but the last time I spoke with our neurologist he said that it was not yet available through the pharmacy. So those are our options. Eeny meeny miny mo! Every time I talk to our doctor he seems to have a new favorite, so I think it's really going to be up to us! Please keep this in your prayers. We need to pick a medication that is finally going to help stop Reagan's seizures and only God knows what that is.
Wednesday, February 18, 2009
Oh what a horrible night. Last night was probably our worst night since the early days of colic. Reagan went to bed around 11:30pm and was back up by 12:30am crying. I don't know if it was pain from her eye or if the patch held by loads of tape that was bothering her or what but she was hysterical. We could do no right and I was seriously losing my patience with her. Finally Mike got up and took her which cheered her up for about 10min or so and then it was back to crying. This went on until 4:30am when I finally got her back down in her bed. Of course Mike and I were so exhausted we didn't wake up til 8am...making him late for work and me late for our doctors appt! The doctor took her patch off today (actually we took it off with adhesive remover ahead of time so the doctor wouldn't rip her eyebrow off), she looked at her eye and said that everything looks good. It just needs some time to heal. I was surprised, it doesn't even look that red. I had been all worried about having her picture taken Friday and her not having enough time to recover (which by the way has been rescheduled to April) but it looks like that wouldn't have even been an issue. Oh well, I still think it will work out better to wait on the photos. Maybe by then her eye will have had time to adjust and she'll be crossing it less. Today marks one year of daily posts on this blog! It's hard to believe that it's been a whole year since starting the blog to update everyone on Reagan's progress while on ACTH (a few of the posts are dated further back but those were just to give Reagan's full history). I've decided to keep up the daily updates ever since. I know it's crazy to continue to post everyday (and at some point I may cut back) but for now it's a good way for me to keep track of her daily progress and it also gives our family and friends a glimpse into our daily lives.
Tuesday, February 17, 2009
Last night we gave Reagan her medicine around 11pm and she fell asleep shortly afterward. She woke up at 4:30am in a nasty mood. Fussing and crying and unable to be pacified without her usual milk or juice bottle. She finally fell asleep right as it was time to leave the house and slept the whole drive in to the hospital...thankfully she woke in a much, much better mood. They actually bumped her surgery back up to the first surgery of the morning (because the baby that was supposed to go before us was a no show). So around 8:15am they took her back and by 9:30am the doctor came out and told us everything went smoothly and we were able to go back and see her in recovery. She was laying there so peacefully...a stark contrast to the hysterical little boy screaming a few beds down. That little boy kicked and clawed and screamed the entire time we were there in recovery. When we left he was still carrying on! I think it was more of a temper tantrum than a reaction to the surgery itself. I was surprised at how quickly we got in and out...it's amazing that a surgery can take less time than a standard doctors appt!! Reagan has been pretty groggy but she's having a hard time getting comfortable so was only sleeping for a few minutes here and there. I'm sure it has something to do with the giant patch covering her eye. Hopefully she'll feel better once it's off tomorrow. Poor thing, she finally settled down and took a nice long nap this afternoon. Not sure how much sleep we'll be getting tonight. Please continue to keep her in your prayers.
Monday, February 16, 2009
Well we made it through last night without any more incidents. Reagan did wake up a couple times though. She woke up at 2am crying but I was able to get her back to sleep without picking her up just by giving her some pedialyte. She woke crying again at 5am and Mike got up with her. They were up for about 30min and then he came back to bed. He left her sleeping on the sofa where she slept until 10:30am (see picture below)!!! Maybe she should sleep on the sofa every night? Other than sleeping unusually late, she seems to be feeling fine today. I was a little nervous in giving her her first bottle this morning, but I took it slow and she did OK with it. We skipped OT this morning (as it was scheduled for 9am) but Reagan did really well during PT this afternoon. Her cataract surgery is scheduled for 9:15 tomorrow (Tues) morning, but we have to be there by 7:15am. She was supposed to be the first surgery of the day, but they've pushed her back to second (they always do the younger kids first). It's a little irritating because we're having to hold off giving her her morning dose of medicine until after the surgery (since her Topomax has to be given with food and that is a big no no with anesthesia). We're going to give her tonight's dose as late as possible (between 11-12) so there's not a big gap between doses. I doubt we'll sleep too soundly tonight, surgery regardless of how minor is always a nerve racking thing. Please say some extra prayers for her!!
Sunday, February 15, 2009
I just wanted to say a quick thank you to all of you who check in on us and pray for Reagan (and her little friends) on a daily basis. We've been dealing with seizures for over a year and a half now and it's only by the grace of God that we've managed to keep sane through it all. Getting a full night's sleep definitely helps. Last night Reagan went to bed at 11pm and woke at 5am. Not exactly what I would consider a full night's sleep, but certainly better than the up every 1-2hrs that we dealt with for the first 15months of her life. She's been in a pretty whiny mood today. We went to lunch during our open house and she was quite the character, we had a hard time shutting her up! Very feisty and fussy, I think it's probably teething. Her top two lateral incisors (on either side of her front teeth) are sitting there right under the skin ready to break through. She was also rosy cheeked and running a little fever tonight. Seizures have been yuck today, especially after waking, but I wonder if that might be a result of the teething as well. Please continue to keep her in your prayers...surgery is only one day away. **Update-Reagan threw up all her medicine tonight. I don't know if this is an isolated incident or tip of the iceburg but this could throw a wrench in her planned surgery...lots of prayers needed!**
Saturday, February 14, 2009
Today was a blah day. It was nasty and rainy all day. We just hung around the house watching tv and I cleaned a little for our open house tomorrow. I know, not much of a romantic Valentines day, but oh well. Reagan has had a pretty good day. She slept through the night (thank God) waking up around 7:45am. She was strangely awake all day and didn't take her first real nap until 5pm! Hopefully she'll feel like sleeping tonight. We've got a lot of things going on right now...the ever present seizure issue, medication changes, and Reagan's surgery on Tuesday...and I ask that you would please keep all of these things in your prayers. But often I am reminded that things could be worse and we have so much to be thankful for. I want to take this time to ask that you would also keep Gavin and Samuel in your prayers as well. Gavin and his family have had the roughest of weeks (with 4 trips to the ER) and are seriously questioning their faith. Please lift them up. Samuel just made it home from the hospital (where he was on a heart/lung machine for days and made a miraculous recovery) and now he's back in with pancreatitis. So stressful for these families, constantly worried about the health of their little ones and having to spend so much of their time in the hospital. They need lots of prayers to get them through these tough times.
Friday, February 13, 2009
What a night last night! I guess we're lucky we had a good one the night before or we'd really be dragging right now. Reagan was up every 1.5-2hrs last night (and so were we). A lot of moaning and whining, she just wouldn't settle and go back to sleep. We tried her in our bed, back in her bed, back in our bed...nothing was working. It was a miserable night for everyone. What's strange is that she didn't take a lot of naps yesterday, she even went 6hrs without a nap before bedtime, so I was expecting a good night's sleep. Boy was I was wrong! And then to top it all off we've had a busy day running from doctor's appt to therapy appts today. We had her pre-op appt this morning for her cataract surgery on Tuesday. It wasn't really much of an appt, we just signed the consent forms for the surgery and she reconfirmed that she thought it was a good idea to remove it now, since it looks like it's obstructing about half of her pupil. So now we just have to hope that our extremely pregnant surgeon makes it until Tuesday. After that appt we ran to grab a quick lunch before Reagan's therapies. At therapy it was almost deja vu of last week, in that she fell asleep during the last part of her feeding therapy and then slept during the first part of her occupational therapy. We're all a little pooped today. Seizures were actually pretty decent today. Tonight she did have a couple of different strong ones that really seemed to bother her (and me). She was in a good mood most of the day, but she did get a little fussy tonight. Hopefully that won't interfere with tonight's sleep. Please continue to keep her in your prayers.
Thursday, February 12, 2009
Last night was awesome! Reagan slept straight through the night and I had to actually wake her up at 9am! I found her in her bed with all her covers off and her little legs were like icicles. Poor thing. I have no idea how she continued to sleep like that. Not to mention when I went to pick her up I caught a whiff of the super stinky diaper she had been sleeping in! She's been in a great mood today. She had vision therapy at 11am and then physical therapy at 1pm. She did well for both, although she did get very sleepy toward the end of PT. Too bad nap time interfered with therapy time. She was very alert and talkative most of the day. Below are some pictures of little Miss personality! (Please continue to pray for less seizures!)
Wednesday, February 11, 2009
Reagan was up again last night. No idea what this is all about. She didn't go to bed until her normal late night hour, then at 3am our electricity went out and her noise maker turned off and she stirred a little, but then she woke up crying at 5am. I put her in bed with us where she slept a little bit longer. Maybe it's teething related. She has been in a constant state of teething for the last few months. Speaking of, I'm not sure but she may have a cavity forming on the backside of her bottom left molar. I've seen something that resembles a cavity a few times, but it's just so hard to see back there! I don't know if it's a cavity, just a shadow, or some leftover chocolate milk. I've tried looking in her mouth while she's sleeping, but the second I try to open it wider, she wakes up. I've also tried to pry her mouth open while she's awake and she bit the living heck out of my finger (and her toothbrush). So I guess the only thing we can do is schedule an appt with a dentist. The thing is she's going to have to be sedated so we can't go to just any old dentist. I tried to get an appt at Texas Children's Dental Clinic and the soonest they can get her in is mid April. I'm not sure if I should wait that long. She also has a few teeth that are a little yellow so it probably wouldn't hurt to get a good cleaning done while we're there too. One problem is that she still drinks bottles and her main source of calories is Pediasure...and it's the enteral version of pediasure which is made for use with g-tubes and has no taste whatsoever so I sweeten it with chocolate or strawberry syrup. And I have to admit that I'm not the best at brushing her teeth on a regular schedule, because a lot of the time she'll get fussy and fall asleep while drinking a bottle. God forbid I wake her to brush her teeth. Maybe it's nothing. I hope so. Either way I do need to do better about brushing them regularly. Seizures have been all over the place today. This morning she started out with a ton and then they tapered off. The majority of the day went by pretty smoothly with some here and there and then tonight (after waking from a nap) she had them almost nonstop for 2hrs. Yuck. We really need to see some improvement soon. Please keep her in your prayers.
Tuesday, February 10, 2009
Several months ago I saw a link on a blog to scientific study that particularly interested me, the Epilepsy Phenome/Genome Project, and I signed up so that we might be able to participate. This is a huge multi-center study that will attempt to find a genetic link to certain types of epilepsy (one of which is Infantile Spasms). They are also looking for a genetic explanation as to why certain drugs work and certain drugs fail for these kiddos (which as amazing as it is, has never been researched up to this point). As a scientist, I find all of this extremely interesting, but as a mother I hope that this study may eventually lead to a more customized treatment of the disease (instead of the current eeny meeny miny moe method).The results of this study probably won't benefit us in anyway but somewhere down the road they may help other children receive more effective treatment and result in a better prognosis. This is a particularly easy study to participate in, they ask most of the questions through phone interviews (so you don't have tons of paperwork to fill out) and you only have to give a small amt of blood (which they will send people to your house to do). Originally I signed up for this because I saw that Baylor (which is located in Houston) was going to be one of the centers participating in this study, but the lady that I spoke with last night was actually from the University of Michigan. She said that Baylor dropped out of the study but apparently you don't have to have a local center in order to participate. You can go through any of the centers...and if you choose Michigan she will be particularly thankful! I just think that this is a great way for us to try to give back and help others going through this same journey. I ask that any other Infantile Spasms families reading this blog would please consider participating in this monumental study...click here if you are interested. Reagan was up a lot last night. I don't know what her deal was, she didn't go to bed last night until 11:30pm and then she woke up crying at 1:30am. I put her in bed with us (always a bad idea) and then I woke up every time she made the slightest movement. She slept until 6am and then we both got up. I've been exhausted all day today. Luckily all of Reagan's therapies were in house today. The seizures have been about the same today...not good. Tomorrow I'm supposed to up her am dose of Topomax. That will put her at 90mg 2x day, which is a fairly high dose so we really need to keep an eye on her for any signs of metabolic acidosis. Please keep her in your prayers...Less seizures...Less seizures...No seizures.
Monday, February 9, 2009
Reagan has been pretty feisty today. She woke up early at 6:45am, which allowed enough time for medicine and a half a bottle before 9am therapy. She started off a little whiny for OT, but she actually was quite cooperative during the session. Her head control has really improved lately. I'm not sure whether that is related to decreasing her vigabatrin or the recent tightening of her entire body, but we'll take it. She still doesn't want to bear weight on her arms so we've been using her arm restraints to try to get her to keep her from bending her elbows. She's also back to clamping her fists shut so we've been taping her hands every chance we get. This afternoon she had PT and she was still feeling feisty. She was very talkative and she had her eyebrows all scrunched up like she was mad but then a slight smile on her face. She's a turkey! Seizures have been back up today. She had a couple better days after the Topomax increase (and I purposely didn't say anything) and then pow today they're back on the rise. Ugh. I feel like we just can't catch a break. I decreased her vigabatrin again tonight (from 250mg to nothing for her pm dose). Only one more week and she'll be off of it completely. Please continue to keep her in your prayers. She needs some relief from these darn seizures!
Sunday, February 8, 2009
Reagan went to bed early last night (before 10) and somehow still managed to sleep through the night. She's been such a good girl today. She even put up with 30min in her stander without so much as a peep. I've been pretty bad lately about not putting her in the stander. She's just been so tensed up and spastic, it's hard to even get her AFOs on her (the benefit we saw from the casting is almost completely gone...she's a ballerina once more). I think we're definitely going to do another round of Botox. I have a feeling the rigidity we've been seeing lately in her arms and legs is due to the effects of the Botox finally wearing off. It was probably doing more to help her than we realized at the time. Not a lot going on this week...just a week full of therapy sessions and a pre-op appt on Friday for her eye surgery. Tomorrow is another decrease for the vigabatrin (we'll be down to just one dose of 250mg in the am). I'm still hoping somewhere along the way we'll begin seeing less twitches. Maybe once she's completely off of it. Continued prayers are greatly appreciated!!
Saturday, February 7, 2009
Reagan still seems to be feeling a little off today. Maybe it's the teething or maybe it's last night's increase in Topomax. I sure hope she's not getting sick. She was a little fussy and difficult to get to sleep last night and then today she's taken a couple longer naps. She probably won't want to sleep tonight. Or maybe she will...who knows with this girl. Today I spoke with the mother of a little girl that was just diagnosed with Infantile Spasms. It's so heartbreaking to hear of yet another family having their lives turned upside down because of this disorder. I remember those early days, some of the darkest, most depressing of my life. Reagan has definitely turned out to be a difficult case...so I hope I didn't scare her too much with our story. Her daughter, Kendall, has vision problems and also had cataracts like Reagan. She actually saw the videos on Reagan's blog and realized that her daughters startles might actually be seizures. As heartbreaking as it is to watch those videos, I posted them so that maybe they can help others in getting a quicker diagnosis. Please keep this family in your prayers.
Friday, February 6, 2009
Little miss Reagan was up last night. She's been sleeping so well lately I almost take it for granted that she's going to sleep through the night. But not last night. She was up at 3:30am feeling pretty fussy. Could be teething...she's been in a constant state of teething for the last month or two. Somewhere along the way another tooth has popped up (#14) it's her top right canine (the only ones she is missing now are the top two lateral incisors, which are on their way out, and her second molars). Her vision teacher called and canceled her morning therapy session, so technically we could have slept in, but Reagan was up bright and early at 8am. Then she had feeding therapy at noon and OT at 1pm...too bad she was worn out from the early morning escapades. She did OK in feeding although the last 15min or so she basically just slept in the arms of the therapist while she did oral motor stretches on her. Then for OT she was out like a light. We ended up just talking with the OT for the first half of the session and then Reagan woke up towards the end and she did some stretching with her. Not the best therapy day. I finally heard back from her neurologist tonight at 8pm. His suggestion was to try increasing her Topomax a little, from 75mg to 90mg (while we continue to decrease the vigabatrin). See if this helps any and if not then proceed with a new medication (probably either lamictal or keppra). I increased her pm dose tonight. We do have to be careful with increasing the topomax...because with each increase the chances of metabolic acidosis also increase. Please keep her in your prayers. We just need something to work!
Thursday, February 5, 2009
As many of you know, I'm on a constant quest for the perfect pictures of Reagan. A good friend of mine, Heather, emailed me about a program that sets up free professional photo shoots for kiddos with special needs. It's called The Littlest Heroes Project. Such a neat idea. Families with sick or disabled children often do not have the time or the resources to have professional photos done and this organization gets it done free of charge. I filled out the application on Saturday and by Sunday they emailed me an acceptance. You look through their list of photographers in your state/local area and they pair you up with one of your choices. Our photographer, Terra Richards, seems to be the perfect fit. Not only do we share the same first name (she has one extra r), but she's an awesome photographer and she's a very faithful person as well. It seems it was fate that paired us with her and I can hardly wait to see what beautiful photos she takes of Reagan. We have a photo shoot scheduled for Feb 20th...only 3 days after Reagan's eye surgery...so we need to pray for a quick healing and no swelling or redness (in addition to a problem free surgery)!!! Typically, I wouldn't want to do this so close to her surgery, but Terra actually lives in Dallas and just so happens to be taking a photography workshop in Houston that weekend. Again, meant to be. I just hope Reagan is cooperative and we can get lots of good shots during her time here. No word today from Reagan's doctor. Seizures have been rough today, particularly the first hour or two after waking. Please continue to keep her in your prayers.
Wednesday, February 4, 2009
Today was a nice laid back day. No therapies. No doctors appts. A nice change of pace. I even got out for a little while to visit with the mother of a little girl, Julia, that goes to Reagan's therapy place. We met months ago in the waiting room at therapy when she told me how much her daughter (who has CP and CVI) benefited from HBOT therapy. We've emailed each other but have never had the time to get together until now. Julia is a little older but reminds me of Reagan in many ways and her mom had tons of helpful information to share with me. They do a lot of alternative type therapies and she gave me some great ideas on things we can do with Reagan and equipment that might help make our lives easier. I only wish I would have had more time to stay and chat, but I had to get back to Reagan and Grandma. Seizures continue to be nasty today. Too many, too intense, and too close together. I don't like it. I'm going to put a call in to her doctor to see if maybe we can start weaning her ON to the new medication (which we still haven't decided on) as we finish weaning her off of the vigabatrin. I just don't want to have another 1.5wks with her having this many seizures. Please keep her in your prayers. Less seizures for her and guidance for her doctor in choosing the next medication to try.
Tuesday, February 3, 2009
Reagan has been full of personality again today. She had a wonderful night's sleep last night...she slept from 10pm to 8:30am this morning! We postponed her occupational therapy this morning til 11am, so she had a little extra time to wake up, eat breakfast, and get over some of her morning seizures. Turned out to be a good choice, because she was in a great mood for therapy. Then during physical therapy this afternoon she really turned on the feisty. She was fine and then the second we put her in that new walker she pitched a fit! I think it was a real tantrum...she was crying and crying and the second we took her out of it the crying stopped. She did NOT want to be in that thing. This afternoon the spunkyness continued. She definitely said GaGa some more today in response to Grandma's voice. I tried and tried with Mama tonight and she was moving her mouth around like she wanted to say it but it just didn't come out. She better learn how to say Mama or Dada or she's going to be out on the street! The twitching and the seizures continue to be rough. I keep hoping that at least the twitching is going to fade away soon (since we never saw twitches until we put her on vigabatrin). Please keep her in your prayers. It's just so rough on her to be having this many seizures. I don't know how she has a clear thought in her head with the amount she's having right now. Definitely need lots of prayers.
Monday, February 2, 2009
Today was a hectic day but all went well (thanks for the prayers). Reagan was up past midnight last night and then woke bright and early at 6am. That was OK because we had to get up anyway...Mike had to drive to north Houston for his flight and we had an early appt in the med center. Our first appt was with genetics for a skin biopsy. We've been talking with Reagan's doctors about testing her for mitochondrial disease. This is usually done with a muscle biopsy, but the skin biopsy is a less invasive first step. Now we don't necessarily think Reagan has it but it's just another thing we need to check for. Most kids with mitochondrial disorders have issues with multiple organ systems, usually very serious, they are iv fed and are constantly in and out of the hospital (See Gavin or Samuel...both precious little boys that are battling mitochondrial disorders). Then there are other kids that are relatively healthy but may have other problems such as hard to control seizures or gastrointestinal issues (See Cody...who was just recently diagnosed at 4yo). Anyway, it's just something we need to check for, because although there is no cure there are certain medications and vitamin regimens that can improve their quality of life. To do the skin biopsy they injected a spot on the inside of Reagan's left upper arm with lidocaine and a few minutes later they pushed and twisted this pencil like contraption with a little sharp circle at one end to cut off a tiny circle of skin. Reagan didn't feel a thing and just laid there watching the doctor as he did it. He was VERY shaky (I don't know if it was nerves or old age) but it was making me nauseous. Reagan handled it like a pro...she's such a big girl. Then we went across the street (nice to have a med center with everything right there) to the Ear, Nose, and Throat for a follow-up on her ear that had the conductive hearing loss. The doctor went in, cleaned out tons of wax out of both ears (must be genetic because I remember having that problem as a child), but he said they looked great! Whatever fluid that was behind her right eardrum before was gone now and her hearing had improved (they did a quick hearing test on both ears and they passed). Yeah! Finally, something working properly! The rest of the day was spent around the house hanging out with Grandma. Let me tell you, this girl loves her Grandma. It's just the sweetest thing! Tonight before I put her in bed I swear she said Grandma 4 different times! It's more like GaGa, but she says it in response to Grandma's voice so I think she's really trying to talk. She's been so wonderful today. Just a doll (see pictures below, the close-ups are some of my all time favorites). So talkative and so happy (despite all the junk she's dealt with today), just a little angel. Please keep the prayers coming for seizure improvement...today they were pretty rough.
Sunday, February 1, 2009
OK, so I was a little off. Today wasn't the decrease. Tomorrow is the day and then Reagan will be down to 250mg vigabatrin 2x day. The seizures have been all over the place. There are times when she'll go a few hours without any and then the rest of the time they are hitting her pretty hard. I hate it. I just hope that whatever we add next will be "the one". This poor girl deserves some relief from these seizures. Please keep her in your prayers. Reagan has two doctors appts tomorrow. The first is an appt at 8am with genetics to get a skin biopsy. This is the first step in testing for a mitochondrial disorder. The next step would be the muscle biopsy, which is much more invasive, so we're going with the skin biopsy first. Then she has a check up with the ENT for her ears (her hearing test showed mild conductive hearing loss which was from fluid in the ear) so we're just following up with that. Mike is also leaving in the morning for Calgary Canada on business. He's going to be there until Friday, so it's going to be a long week for me without him. Thankfully my mom is going to stay here to help with Reagan. Please keep him in your prayers for safe travels. I'm sure he'll enjoy the scenery and the time away. One concern, I injured my lower back this morning. I have no idea how I did it (I'm sure carrying around a 27lb baby 24/7 has nothing to do with it), but it's quite painful and I have no idea how I'm going to manage if it continues to hurt like this. So...lots of prayer requests. Here's to a quiet and uneventful week.