Sunday, August 31, 2008
There's no doubt about it...this girl can whine (some would say she gets that from her mother...but I disagree)! Reagan woke up this morning super whiny. And after a great night's sleep...go figure. Then as whiny often does, it turned into fussy this afternoon. She got over tired and then refused to take a nap and that was when she became a little terror! Thank goodness we had a good day yesterday, because at times today was remniscent of Friday (but not quite as bad). But after her late afternoon nap she awoke in a great mood. I don't know what was causing it, but I don't think it had anything to do with her stomach. As for the HBOT, we still haven't noticed any changes. It's still very early, but we sure would love to see some improvement in some area...whether that be seizures, development, tone...whatever! And with the changes we're making to the diet now, it's hard to really use seizures as a gauge. She's going to be coming out of ketosis as we slowly take her off the diet and that in and of itself can cause an increase in seizures. Please continue to keep her in your prayers...that we'll see some good results from the HBOT and that she won't have any negative effects from coming off the diet!!
Saturday, August 30, 2008
We needed this. A nice relaxing day. Reagan slept through the night last night and woke up in a wonderful mood. She's actually been great all day. Very mellow. And a little sleepy. She took a long 4hr nap this afternoon...she must still be a little worn out from the cry-a-thon yesterday! Mike missed out on golf this morning to spend the day with us just laying around the house. We had dinner tonight with my stepsister and her husband. It's too bad we live so far away because we really enjoy hanging out with them! Well, it's time for me to go, Reagan's asleep so I better go to sleep as well. Thank you for your continued prayers for our little sweetie!
Friday, August 29, 2008
Wow...what a day. Not in a good way either. Reagan was up ALL night last night. OK, not all night but it sure felt like it. She went to bed around 8:45pm and slept until 2am. She woke up cranky and whiny. There was no getting her to go back down. I got up with her and tried to get her to take a bottle but she was just not having it. Around 3:45am she went down but only for about 20min and then she was up again but this time WIDE awake and happy. So I got up with her and we watched some early morning TV and I managed to get her to drink some milk (thinking surely it would make her tired). Nope. She was up until 6am when I finally laid her back in her swing awake but content. Then she woke up for good at 8:30am. What a night. So everything seemed alright with her in the morning...she was in a pretty good mood. We went to do her HBOT at 11 and she did fine for the first half. She started getting antsy the last 30 min and the whining returned. Then the last 10 minutes she was very upset...borderline hysterical (and a little stinky). Well sure enough she had a diaper full, so I assumed her tummy was hurting her. I changed her and headed back to the house but she didn't stop crying. Acutally, she didn't stop crying the rest of the day! We're talking nonstop every waking second hysterical crying! (And nearly hysterical Mommy!) I thought I was going to go insane! My Dad helped me and carried her around half of the time but there was just no consoling her. NOTHING. She did take a respectable 2 hr nap but she woke up in just as foul of a mood! You would think she would get tired...crying like that nonstop...apparently not! I know it's her tummy issues. Poor girl! She's got an appt in October with a good GI doctor...I just hope we can wait til October! She's finally down (I hope for the night) and anyone that wakes her...takes her! Needless to say driving back to Houston today just wasn't going to happen, so Mike is on his way up here for the holiday weekend. I did get one great piece of news today! The seating company that is ordering Reagan's chair for her is going to give us the stroller base (a $2500 value) free of charge!! How awesome is that?!?! I was thinking we were going to have to hold off and buy it next year because the chair itself was already so expensive, but they are going out of their way to get us one now! FREE!!! I couldn't be more happy about that! Finally something is going our way with this seating mess! Thank you God!
Thursday, August 28, 2008
Reagan went to bed early again last night and then decided that she wanted to wake up for good at 4am. I was not too happy about that, but I got up with her nonetheless. Finally around 6am I was SO ready to get back to sleep so I put her in her swing and (I guess) she fell back to sleep. She did really well in the HBOT chamber today. We tried a new video...Care Bears...she's not a fan. I just think cartoons are too much for her. She didn't even want to look at it (so basically I watched 40min of Care Bears), but then when they switched it out for Baby Mozart I could tell almost immediately it was getting her attention. The Baby Einstein videos are perfect for her. We're talking the 3+month level, because they are still very basic and show one object (usually a toy or brightly colored thingy-ma-bob) against a black or white background. It stimulates her vision without totally overwhelming her...and it has relaxing Mozart playing in the background for me to listen to! I did finally hear back from the neurologist today about adjusting the diet (actually I got a message from his nurse)...we can begin lowering her ratio again. So tomorrow she'll get a 1.5:1 ratio (instead of 2:1). She'll probably stay at this ratio for a week or so and then if she's still in ketosis we may have to lower it to a 1:1. We can't switch back to regular formula/food until she's completely out of ketosis. So we'll just keep an eye on her and check her urine ketones to see where to go next. This afternoon she did a swim lesson of sorts with the lady that has been giving lessions to Jackson while he's here for HBOT. It was a little chaotic, but Reagan did pretty well. Again, I wouldn't necessarily say she liked it, but she tolerated it well. She did take Reagan under twice which I wasn't too thrilled about...considering Jackson has had to miss an entire week of HBOT due to an ear infection! I'm a little nervous because she was in a HORRIBLE mood after swimming (and she was happy the rest of the day). I think she was just overtired, but you just never know! Please continue to keep Reagan in your prayers...that we'll see a decline in seizures and developmental improvements from the HBOT sessions (and no negative effects from coming off the diet). And say an extra prayer for Jackson that he can get over this nasty ear infection and back in the chamber for treatment next week with Reagan!!
Wednesday, August 27, 2008
Last night followed a similar sleep pattern to the night before except Reagan did wake up for about 45min at 1am. Thankfully she fell back to sleep after I gave her a bottle; I was worried she might be up all night! Her HBOT session went well today. She was content and kicking around for most of it and then fell asleep right at the end. Still no noticible difference but it's really early and I wasn't really expecting to see anything at this point. Still a lot of seizures in the morning, although they really seem to lessen at the end of the day. I put a call into her neurologist. We're wanting to get her off the Ketogenic diet (since it hasn't helped her at all) now that we're already to the highest dose of the vigabatrin. I'm hoping to hear back from someone tomorrow. Karen, my stepmother, took Reagan swimming today (despite her broken arm...she does have a waterproof cast). I wouldn't say she liked it, but she tolerated it for a while. She's just had a case of the whinys all day today! And my patience has been wearing thin with it. This is when it's nice to have Mike around so I can just hand her off and go take a shower or something. But no such luck. Maybe this weekend. Actually, we found out today that the HBOT place is closed Monday for Labor Day. I'm pretty irritated by this...hello, we've come all the way from Houston for this and they are CLOSED?!?! I was not too happy about it. So that's going to throw everything out of whack too because she's supposed to get 5 sessions a week. We may end up having to double up on one day. I don't like the idea of that, but they swear it's perfectly OK to do. I don't know. So now we may end up going back to Houston this weekend (instead of Mike coming here) since Monday is a no go. We'll see. I'll close with a pool picture...Reagan had this look on her face nearly the whole time (like why don't you let me out of this thing)! Click on the picture to see it up close...it's actually a pretty picture...I like the way the light shines on her face. (Oops! For some reason you couldn't click it to enlarge it...but I reloaded it and now it's fixed!!)
Tuesday, August 26, 2008
Reagan was a little sleepy yesterday afternoon, I'm not sure if it was from the HBOT (usually it gives them energy) or from not sleeping well the night before. She took a long nap and I finally forced her to wake up because I was afraid she'd be up all night if I didn't. That's hardly ever a good idea with Reagan...she hates to be woken up! So then she was super whiny until she went back down around 8:30pm. I wasn't sure if she was down for good or not, but when she was still asleep at 10 I decided it was time for me to get some sleep. She slept straight through til 6am! Which was awesome (albeit a little early)! But she woke up happy so I just laid her in bed with me until 7am when we both got up for good. She was good all morning...even during the 25min ride in the car to the HBOT place. We were going solo today so I was a little nervous but it all worked out fine. But then about halfway through the session she had a meltdown. She was tired and just couldn't fall asleep in there and was getting hysterical. We persevered...what choice did we have we're pretty much locked in there...and when we finally got out she was out like a light. We met up with Meghan (my friend from Houston whose son has been doing HBOT) and her mom and had lunch. Both kiddos slept the whole time, which makes for a nice quiet lunch. Then we went over to her mom's house and hung out for a while. We fed both of them and Reagan was up the whole time while Jackson went back to sleep with a full tummy. It was funny because as soon as we were about to leave Reagan was getting sleepy (perfect for the carride back) and Jackson finally woke up. Not much of a playdate but we mommies had fun! (By the way...I was unable to locate Reagan's protein powder in all of Austin, but thank God Meghan picked up a can for me and brought it back with her from Houston. Many thanks to her!) Reagan's seizures were similar to yesterday, a lot in the morning but they seemed to taper off a bit at night. She was good tonight and I gave her a bath (my first unassisted bath) in my stepmother's big bathtub and she really liked it! She kept kicking her feet in the water splashing around (it was easy on the back too because it's an elevated tub so I didn't have to bend down to bathe her). After all that excitement she tried to fall asleep without her medicine, but I did my best to force it all down her (although she did spit out her fair share). Oh well. I didn't want to take any chances with her going down for the night early (like she did last night) without getting her medicine. Please continue to keep her in your prayers...I'm excited about the many benefits this HBOT therapy has to offer.
Monday, August 25, 2008
Reagan was up a lot last night, just waking up fussing here and there (making it hard to get any good quality sleep), hopefully she was just adjusting to her new surroundings and she'll be better tonight. I guess it's understandable considering the rough day she had yesterday. She had a lot of seizures this morning, probably more than she's had in months (bigger clusters and just more in general). I guess we'll hold out and keep her on this dose a few more days...but we better begin to see some improvement or we're going back down to the 750mg dose that she seemed to do better at. She's sure been wonderful today though...super talkative and sweet. Thank you God. Our first HBOT session went off without a hitch. They want you to wear 100% cotton in the chamber and no metal anything (you don't need anything causing any kind of static in a chamber filled with 100% oxygen), so I wore some scrubs they gave me and Reagan went down to her diaper. The inital compression phase (which lasts about 5min) really bothered my ears and I had to constantly try to pop them (although Reagan didn't seem to notice it one bit). Once it got to the proper pressure it was smooth sailing and I layed there with her and fed her a bottle as Baby Einstein played on the TV above. She must like that angle because she really seemed to be watching it, which was great...almost like a 1hr vision therapy...usually she doesn't even notice the TV. They started her out at 1.25atm pressure and eventually they'll work up to 1.5atm. We stayed at this pressure for a full 60min and then it decompresses at the end for about 3min. This was almost worse than the initial phase, it seemed to go faster and bother my ears even more (again Reagan was oblivious). So that's it. We're done for the day. She was great!! She was out as soon as we put her in the car! She must be pooped because she's been sleeping for quite a while now. Mike headed back to Houston today, someone has to work in this family, but he'll be coming back on Friday again. Although he can drive me crazy sometimes (we really know how to push each other's buttons), I'm sure going to miss him! And so will Reagan. Please continue to keep her in your prayers!! We're expecting miracles for this little one!!
Sunday, August 24, 2008
Reagan has been a little turkey today. We waited to leave for Austin until she was good and ready for a nap around lunchtime. She slept for about an hour and then woke up a little fussy but OK. We made it to Austin and she was in a pretty good mood at first and then all of a sudden she turned it on and screamed and cried nonstop for hours. We thought it was probably tummy issues so we encouraged her to go potty, thinking maybe she'll feel better afterwards...didn't happen. She cried and cried some more and then finally fell asleep around 7pm. She was obviously overtired, her only nap all day was in the car on the way here. Poor thing. We were all a little miserable. Now I'm sitting on the phone calling every 24hr pharmacy I can find trying to locate some of her beneprotein (protein powder we have to add to her formula to get her diet to a 2:1 ratio). I tried to pick a can up at our local pharmacy on Saturday and they said that they didn't have any and if we wanted it they would have to order it (normally they have it in stock). Well we didn't have time for that so I figured I could just pick some up (or have it ordered) in Austin. I've called CVS and Walgreens and both say not only do they not have it, they can't even order it!!! I don't know what to do. I'm going to call one more place in the morning and if I can't locate it then I guess I'm going to have to call the dietician that oversees the ketogenic diet for suggestions on what to do! What a pain in the butt! I don't need this frustration. She has an 11am appt for the HBOT tomorrow...so please keep her in your prayers. I'm a little nervous about it. Just starting something new. The high pressure can cause some sinus discomfort and your ears to pop, but there's really no way of knowing if it's bothering Reagan or not (since she's already prone to fussing). Please continue to pray for a decrease in seizures as well as good results from the HBOT!!
So sweet! She's always her sweetest when she's sleeping!
So sweet! She's always her sweetest when she's sleeping!
Saturday, August 23, 2008
Most of today has been spent trying to tie up loose ends before we leave for Austin. I'm still packing (some would say I'm an overpacker) and I'll probably keep adding things until the second we leave! Reagan did have a therapy session of sorts today...yes on a Saturday. Some of the therapists at Reagan's therapy place have been taking this course "A Neurodevelopmental Treatment Approach to Baby Treatment" all week this week. Then on Thursday and today they had one hour sessions where they could work on the techniques they had been learning...only now using real babies instead of dolls! Thursday didn't go so well. Reagan was due for a nap and very fussy/sleepy, but they said they were glad I brought her anyway because they were able to troubleshoot ways to calm a fussy baby (no problem...that's always been her specialty). But today she was a sweetie and worked long and hard. She was exhausted by the end and crashed. Today was the first day at 1000mg 2x day...I can't tell if there has been a difference. She has been having a lot of them today but I'm not sure if it's necessarily been more. I'm sick of trying to decifer between a lot, more, and much more. I just want to see less...much less! Please continue to keep her in your prayers...these seizures are hard on a little body. And keep us all in your prayers as we head up to Austin tomorrow for this new therapy for our little one!
Friday, August 22, 2008
Not too much to report today. It's hard to say about the seizures. I'm not sure if the overall number has increased, but I definitely think they are contributing to her night waking. She woke up again last night at about 4am, having a lot of seizures and understandably couldn't go back to sleep until they finally let up a little. I think they are a little more intense and she seems a little more stunned after each one of them...which I really don't like. I'm hoping that this is just the initial shock associated with the increase. I think the plan is to up the morning dose to 1000mg tomorrow...so that will put us at the max dose of vigabatrin (1000mg 2x day). I didn't want to wait until we start the HBOT to increase it all the way, because if we see an increase in seizures then we wouldn't really know if it was the HBOT or the increase in medication. And although she seemed better at 750mg 2x day, we have to give the max dose a fair shot (otherwise we'll always wonder if it would have worked better), with the understanding that if they don't improve we'll move her back down to the 750mg. So that's the plan. Please keep her in your prayers. Less seizures...less seizures...less seizures...NO seizures!
Thursday, August 21, 2008
Don't get me wrong (I don't want to worry anyone)...today was not a bad day. It just wasn't what we'd hoped for. Today marks one year. A full year since Reagan's seizures began. I certainly did not think we would still be here, still battling them on a daily basis a year later. Just thinking back to that day when we were in the hospital for what Mike thought was something I'd dreamed up (oh how I wish that had been the case)...and they told us Reagan had Infantile Spasms. It still makes me sick to think about it. They told us the worst case scenario...and it was BAD. And we've experienced a lot of the bad, but we've also experienced the good. Through this all we've met some wonderful, caring people and become better parents...we've become better people. I can't say I wouldn't change it because I would...in a heartbeat. But I guess that's why He doesn't let us choose. Today Reagan also turned 17 months old. She's getting to be such a big girl. Seriously...she's really getting heavy. Since starting the Ketogenic diet she's really filled out. She's not that skinny little baby she used to be. That's one area where the seating system will help out. It's so hard for me to carry her around everywhere, all day long. Her therapists came over today to look at the demo and they both agreed that it looks like the best option for her. So now all we have to do it order it. I'm hoping the new seating company we're going through will be able to work with our insurance a little more and lower our out of pocket expenses. We'll see. As for the increase on her medication...I haven't really noticed any difference just yet but last night was the first increased dosage. I'm certainly glad that I haven't seen an increase in her seizures, but I'm sure hoping we'll begin to see a decrease! Please continue to keep her in your prayers as she goes through this transition!!
Here Reagan is in the demo squiggles seat. It's blue but we would be ordering a pink one for her!
Here Reagan is in the demo squiggles seat. It's blue but we would be ordering a pink one for her!
Wednesday, August 20, 2008
What's the deal?? Reagan was up again last night at 3:45am...wide awake! Unfortunately she was a little more whiny than the night before. We were up with her for about an hour and a half and Mike suggested I try giving her some formula and as soon as the bottle hit her lips she was out!! Little turkey! We went in to the ophthalmologist this morning (Reagan was super well behaved in spite of all the seizures) and the consensus is that the cataract has worsened (in the 5 wks since her last appt) and must be removed. More surgery. While I hate the idea of putting her through more surgery, I'm encouraged by how much better her vision seemed after her first cataract surgery. The doctor would prefer to do it in the next couple weeks, but we're supposed to be in Austin doing HBOT. She said that it should be alright to push it back a little but she wants us to watch her left eye and if we notice that she's not using it or it seems to be crossing all the time...then we'll need to come back sooner and move the surgery up. So I went ahead and scheduled it for Sept 23rd (giving us 4 weeks in Austin). The doctor is not that familiar with HBOT/cataracts (there are not many studies on HBOT alone, much less the effect of HBOT on cataracts) but she said that the cataract needs to be removed anyway so she thinks it should be OK. Despite all of my failures lately in the fight to get Reagan services, I think I had a small victory today. I finally got my hands on a Leckey Squiggles seat for Reagan to try out. It's strange how things work out, but it was my friend in CA whose daughter already has a Squiggles seat that was able to give me the number of a rep in Houston that could bring one out to us. Over the last 2 weeks or so we've tried a couple different options with her but I still really wanted to see this one in person. (Not to mention I'm extremely indecisive so it's hard for me to make a big decision like this especially without seeing all of the options!) And now that I see it...I like it. Her therapists are going to stop by tomorrow to give me their opinions on it, but it looks like this might be the one. (I'll post a pic tomorrow.) I spoke with the neurologist and since her seizures haven't gotten any worse (they haven't gotten any better either) we're going to go ahead with the increase. This is the final increase up to 1000mg 2x/day. We're going to do it gradually...so we'll just increase the PM dose over the next couple days and as long as she's OK with that we'll increase the AM dose. I'm a little nervous about this since the last increase definitely made them worse. Please keep her in your prayers...we really need this to work!!
Tuesday, August 19, 2008
Reagan was up again last night. Wide awake at 3:45am and having lots of seizures. Despite everything she was super happy and talkative. I stayed up with her until 5am and finally gave up on her going to back sleep and just laid her down in her swing awake. I guess she went back to sleep but when she woke up at 8am she woke screaming! More tummy pain. She cried nonstop until she finally fell back asleep. Poor thing. She was hurting and held her breath again until she turned completely blue! I hate it when she does that...because she also stiffens out like a board...it's pretty scary. Luckily she woke up in a much better mood. I spoke with Reagan's pediatrician today about getting into Shriners and she said that we need to reapply when she's two. She had talked with the admitting physician and they said that because she's not walking right now, Shriners cannot provide her any more services than she's already getting and that she's better off with her current orthopedist. Ugg. Not at all what I wanted to hear. Of course there is no guarantee that she will be walking by two, but they are more likely to accept her at that time regardless. I don't know. I'm just so sick of getting the shaft by all of these organizations. I can't tell you how much time I spend each and every day on the phone and on the internet trying to get the equipment/services that Reagan needs...that she deserves! Why do they make all of this so difficult?!?!?! It's just so frustrating! She has an ophthalmologist appt tomorrow morning to check on the state of the cataract in her left eye and possibly schedule an exam under anesthesia/surgery. I plan on asking the doctor's opinion on HBOT because I have read that it may accelerate the maturation of cataracts (although I'm not sure how much she'll even know about it to begin with). Please continue to keep Reagan in your prayers as she is still struggling with these darn seizures and due for another increase in her medication.
Monday, August 18, 2008
Reagan slept through the night last night, not waking until 7am this morning. Very nice. I can't even begin to explain how much we appreciate that. After so many months (actually about 15months) of having to get up every couple hours all night every night, we are so grateful to finally be sleeping again. Today we had a full day of therapy. This morning Reagan had OT and then this afternoon she had PT. Usually I don't schedule them on the same day but all the therapists were going to be tied up in a seminar all day tomorrow so we had no choice. Amazingly, she did very well for both! She's just been so sweet and well behaved lately. I think vigabatrin is her "happy medicine". I did finally hear back from her doctor today...at 5pm! He didn't really have anything to say for himself, but I was just happy to hear from him I didn't dare complain. Reagan's seizures are still about the same (a little worse than they were at the lower dose)...his suggestion is to keep her where she is for a few more days to see if she improves. The thing is we want her seizures to decrease as we increase the medicine...not the other way around. I asked him about the HBOT...he said that he doesn't think it can hurt (although there are not really any scientific studies proving it's benefits either). I asked him about the Botox...he said he has no worries about it and that it should be fine to use on Reagan (we've rescheduled this for Oct). So there it is. Please pray that her seizures decrease...actually we want them to STOP!!! We only have one more increase to go (from 875mg to 1000mg), so it needs to happen now! Sorry...but I'm sick of waiting on due time!
Sunday, August 17, 2008
Reagan was up again last night! What's going on with her?!?! I don't like this at all. I was up with her for an hour or so and then Mike got up and laid on the couch with her. I figured she would go right to sleep for him, but a couple hours later I got up and there she was still on his chest and still wide awake!! She is such a turkey!! I really hope she sleeps through the night tonight. She's been such a sweetie again today. She was having a lot of seizures this morning (but they were much improved tonight). I still haven't heard anything from her doctor...I am super irritated! This is so not like him. I will be calling first thing in the morning to leave yet another message! We went out to dinner tonight to celebrate my sister's birthday. We took Reagan and she was SO well behaved. We purposely went to a restaurant that had a louder atmosphere so if she got fussy she wouldn't cause a scene...but she was fine. Not a peep. I am beyond stuffed. We all over ate and should probably starve for a week just to break even. Time for bed...hopefully we'll all sleep through the night!
Saturday, August 16, 2008
Reagan woke up last night and I was less than thrilled. She was super whiny and didn't want anything to do with the juice I was trying to give her. I feel bad because I really have gotten spoiled with her sleeping through the night and it shouldn't bother me...but I was just SO tired last night...I was in no mood for it! Mike could sense my irritation and he finally got up and took her. Of course she fell asleep shortly thereafter on his magic shoulder. I don't know what it is about him but he picks her up and she's out. I pick her up and she's up for hours. She's been in a good mood most of today. She's still having a lot of seizures though. I was really hoping I'd hear from her neurologist today to talk to him about it...but still nothing. It's frustrating because she seemed to be doing better on the 750mg 2x day. I don't know. I was just hoping we'd see even less at 875mg. Maybe she's still adjusting. I would sure like to talk to her doctor about it. I'm praying for a better day tomorrow. Please continue to keep her in your prayers!!
Friday, August 15, 2008
Last night we almost pulled an all nighter at Bible study! We stayed afterwards to get caught up on the Olympics and ended up not leaving until midnight. Oops! But it was exciting watching the women's gymnasts clench the gold and silver! We didn't get to bed until 1am...and little miss Reagan decided to wake up at 6am (probably because she had been sleeping since 8:30pm)!! The last few nights she's been going to sleep earlier than her usual 10:30-11pm (which is nice) but we've been going to bed much later (thanks to the Olympics)! She had a lot of seizures today (she had clusters with 2-3 of the twisting ones that leave her stunned afterwards scattered throughout the day)...so frustrating. I don't know if she's still adjusting to the new dose or what? Her neurologist still hasn't called and I'm getting SO frustrated (considering I started leaving messages for him on Monday). He better call this weekend (I have a whole list of questions I need to ask him). Despite the seizures Reagan has been super sweet and smiley most of the day (although she does get a little cranky when she's having them but who can blame her). Poor thing. I just want her to adjust and the seizures to stop already! Please keep her in your prayers!!
Thursday, August 14, 2008
Reagan has been such a sweetheart today. She slept well again last night. She went to bed around 9:30pm (woke up whining around 1am but went right back to sleep) and slept until 7:30am...our little sleeper!! Who would have guessed?!?! Although she is still sleeping in a swing, so at some point we'll have to get her out of that bad habit. She had a WONDERFUL therapy session today...probably her best yet. She's just been so alert and interactive lately. I think I started noticing it about a week or so ago. She's really been lifting her head way up when on her tummy (before she would be happy just resting it on the floor) and she's been kicking her legs like crazy lately! Today her PT worked with her a lot on rolling...she's so close but she still needs that little extra push/motivation to go all the way over. She even did standing at the end without so much as a peep! She's just been very easy going today. I love it! Below is a picture of Reagan in her cube chair. It's a neat little chair they had at her therapy place and I found one online and bought it to use at home. She sits up in it pretty well...although I have to constantly sit her back up straight because she still tries to slump over to one side. The key is keeping her arms over the sides, it helps to keep her more upright. We actually use it at therapy in helping to push through her legs into a standing position. She's got her AFOs and Hatchbacks (shoes made especially for AFOs) on in the picture. These shoes are good because they are velcro and open at the top and both sides making it very easy to put them on over her AFOs. She only wears them when she's wearing her AFOs and we're working on standing...but they're still pretty cute!
Wednesday, August 13, 2008
Reagan slept well last night but for some reason decided to wake up at 6am this morning. I'm a little worn out...staying up past midnight every night to watch the Olympics is getting a little ridiculous!! It seems like I spent most of the day today on the phone. Barring any unforeseen circumstances (we do still need to run it by her neurologist and her ophthalmologist), we're planning on heading back to Austin and starting HBOT on Aug 25th. So I have had to reschedule quite a few doctors appts today (including the botox injections and hearing test). I still haven't heard back from Reagan's neurologist. Very strange. Maybe he's still not back in town? I left another message today. I'm curious about when he wants to do another EEG, especially since we're going to be in Austin. I did get a letter from Shriners today saying that they think (based on her application and the medical records that were sent to them) Reagan would not benefit from being seen at an orthopedic hospital. That's ridiculous. She definitely has issues that are orthopedic in nature, from her hypertonic/spastic legs to her popping hips, but how are they going to know any of this unless they actually examine her. So I put a call in to the applications dept; I'm hoping to appeal it. I also called her pediatrician and left a message asking her to submit a letter on Reagan's behalf. Hopefully we'll still be able to get her in there. She's been very good most of the day, she got a little whiny/fussy before she was supposed to go to OT but we were able to push it back an hour and she took a nap and woke up in a much better mood. She's been having some small recurrent clusters of seizures today (more than I've been seeing lately)...I'm not sure if it has anything to do with the increase or not. I'm just hoping she'll get adjust to it and they'll taper down. We need this medication to STOP the seizures...not just reduce them. At the same time, there's no doubt that she is feeling better on the vigabatrin, since starting it she has been much happier than ever before. It has truly been a blessing for us to have so many good days with her lately...after enduring so many months of colicky behavior, believe me we don't take anything for granted. Like I said before, it really gives me a glimpse into how good it will be (for all of us) once we get these seizures under control. Please continue to keep her in your prayers!!
Tuesday, August 12, 2008
Reagan woke up in a great mood this morning. We went in for an early session with her PT. She was very chatty and she tolerated the whole session very well. Then we went home for a short nap (for her anyway) and then went back to her therapy place to meet with a salesman that brought some more seating options for Reagan to try out. I'm still not sure which would be best. The main one I wanted to see/try out, the Leckey Squiggles seating system, it seems they are impossible to find and no one has been able to locate one for us to try just yet. These things are just SO expensive, I want to make sure we get the one that is best suited for Reagan. She was great though and let us try out everything he brought without getting too irritated. She was exhausted after all of the excitement and took a super long nap (~4hrs) when we got home. Unfortunately she woke up very unhappy...screaming and crying nonstop...obviously having some serious stomach pains. We HAVE to get her seen by a GI doc. It's insane but she's been having stomach issues since birth. Why are we the only ones concerned about it? She saw one GI doc months ago but he was an idiot and didn't do anything except put her on some super expensive hypoallergenic formula (neocate) which she didn't need to be on. I'm going to ask her neurologist about getting in to see another doctor tomorrow. He should be back in town as of Sunday and I put a call in to him today but I never heard anything. She finally cried herself back to sleep after a couple hours of crying. I'm not sure if he's going to stay down for the night because she did sleep so much this afternoon. I just hope when she wakes up (whether it be morning or night) that she's feeling much better! Please keep her in your prayers!! Tomorrow is the first day at the newly increased dose 875mg/2x day.
Monday, August 11, 2008
Last night Reagan was so funny! She was in such a good mood and so wide awake and interactive we couldn't get her to sleep. We finally just had to lay her down in her swing sometime after midnight. She slept in a little and woke up just as happy as could be. I think we've decided to do the HBOT in spite of our appt today. We got to the HBOT place this morning and the doctor who was supposed to do the evaluation was not there. We ended up having to go over to her actual office (another 10miles away), which was pretty pointless. She just gave Reagan the once over and said OK. I guess it's just a formality and they have to have a doctor's approval, but really. The place is just not very well run and the guy that is in charge is a little harebrained and disorganized but I think we're still going to give it a try. I do want to check with her doctors ahead of time, but I'm thinking maybe in the next couple weeks we'll get her started on a 10 session treatment. Reagan was so wonderful again today. Two days in a row. Such a sweetie. And super talkative today. She even slept for most of the drive home so that worked out great. I did up her morning dose today to 875mg...by Wednesday she'll be getting that twice a day. So far so good. She's still having quite a few seizures in the morning and scattered ones throughout the day, but they are significantly less than when we first started this medication. Hopefully we'll begin to see less with this new increase. Please keep her in your prayers!!
Sunday, August 10, 2008
What a difference a day makes. Reagan has been an absolute dream today...sweet and smilely all day long. She slept through the night last night no problem from 10pm to 7:30am. I'm so glad we decided to get another swing. What can I say, the girl likes to swing! We had a full day today...went to breakfast with my Dad and stepmother this morning, then visited some friends of ours that moved from Houston several years ago this afternoon, then came back and watched a days worth of Olympics tonight (DVR'd and live). Very exciting. We just saw the US men's swimming relay team smash the world record (and beat the French at the last second)...so exciting!! Go USA!! Tomorrow morning we're going to the HBOT place for Reagan's evaluation and to watch Jackson do one of his sessions. I spoke with his mom today and she said that she can already see a difference in him. Not necessarily a difference in his seizures, but more so in his physical and cognitive abilities. Which if you ask me is just as exciting. I'm really looking forward to hearing more about it tomorrow! We'll probably head back to Houston sometime after noon so please keep us in your prayers for a safe trip back.
Saturday, August 9, 2008
We made it to Austin. Reagan wasn't too happy about it. She slept for about an hour and then woke up fussy. I don't think she's too thrilled about her new carseat. We finally switched out her infant carseat with a convertible carseat (she had already reached the max weight limit). It's super nice and fancy (the Britax Boulevard it even has a nice side impact protection feature that kind of cradles her head which is great) but I don't think she likes sitting so upright. Oh well...I guess she's just going to have to get used to it because we can't go back to using the other one. I think she also needs to begin sleeping in her crib soon because she's just getting too big for the baby swing. We brought her swing with us but when we put her in it last night you could tell something wasn't quite right. It was dying (her new swing, the one we only bought maybe 2 months ago). So I was up and down all night trying to soothe her and get her to go back to sleep. Needless to say, we were at Babies R Us first thing this morning to buy a replacement. But honestly...we're going to have to wean her off the swing because she's not getting any lighter and it's only a matter of time before this newest swing dies too! I don't know if it was the lack of sleep or the new surroundings or what but Reagan was in a HORRIBLE mood this morning. She woke up early having a lot of seizures but she was in an OK mood, then around 10am or so she just went ballistic screaming and crying nonstop for several hours. There was just no soothing her, so finally we went ahead with our plans to go visit my stepsister and her family. Reagan finally fell asleep and took a good long nap and then woke up a new baby...thank goodness because she was being a terror! We took her to the pool and her Aunt Jennifer took her swimming...she seemed to like it. Then we came back to my Dad's house and spent the rest of the night watching the olympics with my Dad and my stepmother Karen (who just returned early from a tennis tournament with a broken wrist). Busy day. I hope we all get some rest tonight...we could use it!
Friday, August 8, 2008
Today has been one of those days. The last few days we have seen some significant improvements seizurewise and today it's almost like we're back to square one. OK... not that bad but not good either. I feel like I have been given a glimpse into what the future will be like when the seizures are gone...when seizures no longer dictate every aspect of our life...and I like it. It was wonderful! They weren't gone by any means, but you have to understand where we were coming from. Reagan was having HUNDREDS (we're talking 5-6 hundred at her worst) a day. They have decreased since starting the vigabatrin, but the last few days the number was significantly down. Significantly. And you could just tell she felt better! She was more interactive and happy, even her therapist noticed big improvements during her therapy sessions this week. I'm trying to not get discouraged. We've seen improvement which is amazing. Up until this point not a single medication we've tried has helped her in the slightest. I so want to see her rid of these seizures. Her poor little body needs a break! So maybe the next tweak will do it...or the one after that? I remain faithful that she will get that break and the opportunity to thrive in seizure freedom! Now...we're off to Austin (or when Mike gets off work anyway). Please keep us in your prayers as we take to the roads and I will try to update the blog while we're away!
New shoes...aren't they cute?!?! These soft leather shoes are perfect for Reagan since she's always pointing her toes most shoes don't stay on her feet...these fit almost like socks so they stay on very well. She's got a pair of pink flower ones too!!
New shoes...aren't they cute?!?! These soft leather shoes are perfect for Reagan since she's always pointing her toes most shoes don't stay on her feet...these fit almost like socks so they stay on very well. She's got a pair of pink flower ones too!!
Thursday, August 7, 2008
OK...this is something I heard about a long time ago but just recently my interest has peaked again. HBOT stands for Hyperbaric Oxygen Therapy. It's one of those therapies that has not been well studied but many parents have reported seeing huge benefits for autism, cerebral palsy, and yes seizures. It's very expensive and not covered by most insurance. I read a story months ago, about a little girl named Grace who had multiple problems (including infantile spasms) and she had AMAZING results with HBOT. Here's a link to her story...very inspirational. They were out of options with her and tried this as a last resort. And it worked miracles. So you would say...why haven't you already tried it? Well, like I said, it is expensive and there are not many places that do it and the benefits are questionable. I think it's one of those things you just have to go into with an open mind...it may work or it may do nothing...you just never know. A place just opened up in Austin (about 3hrs away) this past week. So what peaked my interest...I was sitting in the waiting room at our therapy place a couple weeks ago and started talking with another mother. She mentioned that her daughter had CVI and had done HBOT and seen huge improvements in her vision (went from being completely blind to spotting birds up in the sky!) So now I'm thinking maybe we should give it a try. What could it hurt...other than our pocket book? I had been talking to a friend of mine about it and she just happened to be in Austin this past week and had her son Jackson evaluated (who also has infantile spasms). He is a surgical candidate and could end up undergoing brain surgery in the next several months, so they wanted to look into other options in the meantime. They are staying in Austin for the next 2 weeks (with her parents that live there) and doing a 10 session treatment with him. So we're planning a little 3 day weekend trip to Austin this weekend. We'll get to visit our friends and relatives that live there and on Monday we'll go in and have Reagan evaluated and get to sit in on Jackson's session to see what it's all about. They think that if he's going to benefit from it they'll see some improvement sometime between 5-10 sessions. I'm excited to see how he does with it. The plan is for us to leave tomorrow after Mike gets off work and we'll head back home on Monday after our appt. It's going to be our first trip to Austin since Reagan was born so we're looking forward to it. Today was another good day and she seems to be doing great with the increase...so please keep the prayers coming!!
Wednesday, August 6, 2008
Well today has been another great day for Reagan. We don't get a lot of those in a row so I will definitely take it! A big thank you to those who lift Reagan up in prayer on a daily basis...it's paying off. She had 3 therapy sessions today and all went surprisingly well. Usually she doesn't tolerate that many in one day...we don't typically even attempt that many in a day but with her bad day Monday and the storm yesterday we had to rearrange everything a little. Seizures have been about what they were yesterday so that's another thing to be thankful for (her therapist even noticed the difference today which is a big deal). We went ahead with the increase tonight...so now she's up to a full 750mg/2x day (with the max being 1000mg). I think we're definitely on the right track, so please continue to keep her in your prayers!
Tuesday, August 5, 2008
We woke this morning to find a lot of rain but not so much wind. Come to find out tropical storm Eduardo took a little turn toward the Texas Louisiana border and left us with nothing but a rainy day. Which is fine by me...I'm not the type that invites hurricanes my way. Quite the contrary, I stay away from windows and lock myself in a closet during a tornado warning. I am definitely a chicken. Today was a nice, relaxing day. We slept in and spent the day being lazy. Reagan was wonderful today...a total sweetheart. She was completely opposite from the way she was yesterday. She also had very few seizures (relatively speaking). Tomorrow we're supposed increase to 750mg/2x day and I'm almost tempted to keep her where she is just to see how she does with a few more days at this dose. We'll see. I'm still on the fence on what to do, but I'm so grateful to have had such a wonderful day. Please continue to keep her in your prayers...
Monday, August 4, 2008
Everything started out innocently enough this morning. Reagan woke up, I gave her her medicine, and fed her a bottle. She didn't really want to eat so I fought with her to get her to drink most of it and then she eventually went back to sleep. She took a good long nap and if I would have known what laid ahead I would have enjoyed the peace and quiet a little more (instead of spending my time playing phone tag with several doctor's offices). Reagan woke up at 11:30 and cried at the top of her lungs for more than 3 hours straight!!!!! My ears are still ringing. If I had to guess I would say it was stomach related but who the heck knows. Her vision therapist came at noon and needless to say that session was a complete wash. Then I had to cancel her afternoon PT session because she finally fell asleep and there was NO WAY I was going to wake her up! What a day. I need some tylenol. A lot of tylenol. Tonight she's been a little crazy. She perked up right before Mike walked through the door. It's like she drank a few Cokes and is super wired...one second she's squealing and grinning from ear to ear, the next second she's fussing and aggravated. Very strange. At least she's not screaming and crying like she was most of the day today...I don't know how to describe it, it's weird, she's almost too happy. I think it has to be medication related. I guess she just has to adjust to the increased dosage. We'll see. Tomorrow is a vacation day of sorts. Mike doesn't have to go to work because of the tropical storm/hurricane looming in the gulf. Hopefully we'll all be able to take it easy and rest a little (and not be blown away).
Sunday, August 3, 2008
It's been a pretty easy going day today. Very hot and humid (although overcast)...thank goodness we have working A/C now (and boy does it work...it's ice cold in this house now). We went to church this morning and Reagan was very well behaved, she wanted to talk but I just kept the juice bottle shoved in her mouth so she stayed relatively quiet. Afterwards Grandma watched her so Mike and I could go out to lunch by ourselves. Reagan was a sweetie for Grandma...I'm so glad they were able to have some happy time together. She's been a little whiny for us this afternoon but that's not anything out of the ordinary. Tomorrow we'll begin gradually increasing her vigabatrin again...from 625 to 750mg. Please pray that she doesn't have any negative side effects from this change and that her seizures will continue to decrease even further.
Saturday, August 2, 2008
Reagan has still been a little drowsy...sleeping a little more than usual during the day (but still sleeping well at night). I'm wondering is she's still adjusting to the medicine increase or if maybe she just has a little something she's trying to fight off. Her seizures have been a little better, although every time we think that we're seeing less...she starts having more. And she's still having stomach issues...I don't know what we're going to do with her. She's been very talkative tonight. We really have to get that on video, it's too cute!! Speaking of video...below is a video of Reagan's "twitches" at their worst. This was taken a few days before we had the EEG done (when we found out that they were non-epileptic), but I was concerned that her doctor may want to see exactly what she was doing so I taped them. They seem to have gotten better lately although they are still there and more pronounced in the morning when she first gets up. In the video they are happening every second or even more than one a second...you can see why I was so concerned about it. The best way I can describe them is it's like watching popcorn pop...almost constant...as soon as she would have one another one would pop up. Yuck. Hard to watch but I thought I should post it because it might be of use for others to see it. The doctor described it as non-epileptic myoclonus and we're still not sure what is causing them, but thankfully he does not think they are harmful to her and she seems no worse for wear. She does have one spasm during the video...it's obvious when she does it (the twisting movement and the dazed look in her eyes).
Friday, August 1, 2008
Reagan had two different appointments today both of which were more or less pointless. This morning I got up at the crack of dawn to take her to the orthotic place (where we got her AFOs). We were supposed to go in to pick up her wrist hand orthosis (WHOs-which keep her hands open and unfisted)...I say supposed to because they didn't have them! They already called and canceled our original appt and rescheduled it for 2 weeks later (6 weeks total since she first got fitted for these things)...and they still weren't there!!!!!! I was very angry. Especially since Reagan screamed and cried half the way there and then continued to carry on and make a scene in the waiting room. While we were there I asked them about my concern that her AFOs seem to be tighter on her and they think I'm just not putting them on her correctly. I don't know what to tell them. I do the best I can and even when her very experienced PT stretches her out and puts them on she has the same big giant red marks! I don't know. Then this afternoon we had to drive back into Houston for a follow-up with her neurologist. This guy is not her primary neurologist, he doesn't specialize in epilepsy like our new guy does, but he was someone we took her to because we weren't happy with our original neurologist. So he's basically just a second opinion guy...although a very bright and experienced neurologist in his own right. I just filled him in on everything that's been going on since he last saw her in March (which is a TON), but that was about it. I am going to send him copies of her 2 MRIs to go over just to see what he thinks. He agreed with our current course of action and that was that. Pretty pointless. Oh well. Our PT did come by today and look at Reagan in her stander and she approves. She thinks it will do the trick...get her up and weight bearing...so I'm going to try to get her in it ~30min a day to start out. She's still having a lot of seizures today, hopefully she's just adjusting to the increase and this won't continue. Poor thing. I really hate seizures! Please keep her in your prayers!