Wednesday, December 31, 2008
Another year has gone to the wayside. I admit 2008 was not the best of years for us. Reagan was plagued with horrible seizures the entire year with seemingly no end in sight. But this year I have seen many miracles in the lives of other families. Other children suffering from the same seizure disorder as Reagan, now completely seizure-free and making huge strides developmentally. These are families and children that I prayed for on a daily basis and now I praise God daily for the miracles I have seen in their lives. It gives me hope. Hope that this year will be the year for Reagan's miracle. The seizures will stop and her development will take off. I know it can happen. I've seen it happen! Now we just need it to happen for Reagan. But 2008 hasn't been all bad. There have been some high points. Reagan is now sleeping in her crib (in her own room) and through the night (most nights). That in itself is a miracle! And it has been a HUGE blessing in our lives. It's amazing how much stress not sleeping can add to your life. Reagan has also become a much, much better baby this year. She finally got over the colic she battled for the first year and a half of her life. She's just such a joy to be around now. Her smile can light up any room. She still battles the occasional tummy pains and crying fits, but all in all she's so much happier...and that makes us so much happier. I also want to take this time to thank everyone that checks in on and prays for us on a daily basis. Your support means the world to us and we are so thankful for each and everyone of you! Please continue to keep our little angel in your prayers and here's to 2009...the best year yet!
Tuesday, December 30, 2008
Reagan took a late night nap that kept her up pretty late last night but at least she slept through to 6:30am. Not great but I'll take it. And she finally woke up on the right side of the crib because she's been in a great mood all day today. She's been a total nut case tonight! Very high strung and talking it up...I think Mike must have given her some candy when I went to the grocery store earlier. She's been cracking herself and us up for hours! She'll just start laughing out of no where and then we start laughing... I guess it's true what they say, laughter is contagious! She's just now getting tired and cranky from it all. She's worn herself out and now can't figure out how to settle down for the night. I'm hoping she's going to crash and sleep well tonight. I've been a little wiped out with her erratic sleeping the last couple nights. She does keep us on our toes. Never a dull moment with this girl!
Monday, December 29, 2008
Oh what a night...isn't that part of a song? Oh my goodness Reagan was a turkey last night (and this afternoon). I'm still totally at a loss...is it teething...is it her tummy?? I don't know, but whatever it is makes her miserable!! She woke up at 3:30am a little fussy but OK. I fed her a bottle, then by 4:30 she had kicked it into high gear with the crying. Finally around 6:15am Mike couldn't take it anymore, he took her from me and laid her in bed with him...and within a few minutes she was out. I don't know if he's just magic or if she wears herself out with me and then passes out for him. She woke back up a little after 8 and she seemed to be feeling much better. She was in a good mood all morning. Then around 3pm it hit her again. She started up the crying and went almost nonstop for 3+ hrs. She stopped for 15min or so while I fed her a bottle, but when she was done it started again. She didn't stop for good until she fell asleep (again thanks to Mike). I just don't know what to do with her. It's a stark reminder of the fussy baby we used to deal with on a daily basis. I guess I have gotten spoiled lately with her being such a sweetie...please come back sweet girl!!!! Keep her in your prayers...she's still dealing with a lot of seizures on a daily basis and obviously having some sort of other pain we're still not sure about.
Sunday, December 28, 2008
Reagan has been waking up around 6:30 every morning the last few days. I thought I heard something and looked over at the monitor and there she was kicking and squirming. Mike gave her a bottle and then put her in bed with us. I don't think she ever went back to sleep, she was content just laying there next to us. She's twitching a lot, especially in the morning. I'm not sure if it wakes her up or just prevents her from going back to sleep. She's been in a good mood most of the day today, I was even talking about what a sweet girl she's been lately. Until tonight. I don't know if it was the apricots I fed her or what, but she seemed to be having some serious tummy problems. Nonstop screaming and crying for almost 2hrs! Poor thing. It could be teething because I did find a new tooth coming in (the bottom left canine...tooth #10), but I'm pretty sure it was tummy related. We just feel so helpless when she gets like this. There's NOTHING we can do to help her, we just have to wait it out. Mike rubbed her tummy until she finally cried herself to sleep. I was hoping that maybe the probiotics she's been taking were helping her (because it's been a while since the tummy pains have reared their ugly head), but maybe not. I sure hope she sleeps well tonight and wakes up feeling much better...tomorrow. She's supposed to have OT tomorrow morning, so we'll play it by ear and see how she's feeling. Please keep her in your prayers.
Saturday, December 27, 2008
It was an interesting one last night. Reagan went down for her late night nap around 7pm and then did not want to wake up. I tried my best to wake her at 8, but she would not budge. I fed her a bottle and gave her all her medicine while she was still fast asleep! We certainly did not expect her to sleep through the night going to bed so early, but she slept straight through to 6am, which is pretty impressive! We were all super lazy today...our biggest excitement was watching a Big Break marathon we had recorded on DVR. Below is a pic of Reagan modeling her new green M&M onesie. She is such a big girl now! She's wearing almost exclusively size 24months now. It seems like she was always wearing a size or two smaller than her age! How things change! For a kid who hates to eat, she sure looks healthy!!
Friday, December 26, 2008
Last night Reagan took a late nap (like she's been doing lately) and then did not want to go to bed. She started getting fussy and I finally put her in her crib around midnight. After only a minute or two she started up and got herself completely hysterical. I went and picked her up, tried to console her but it didn't work. She didn't want a bottle, she didn't want to be rocked...she just wanted to yell and scream at me!! I'd lay her down and she'd get worse. Finally around 1am she wore herself out and fell asleep. The whole process was draining and I was left feeling totally exhausted too. Luckily, she's been very good all day today. The weather here is so unChristmasy. There was a high of 74 today and with 90% humidity, it's just yuck! Tomorrow it's going to rain but at least there will be cooler weather to accompany it. I'm still very irritated with Reagan's AFOs. They just are not fitting her properly. She's still getting very irritated on that pinky toe (and heel) on her left foot. She's not able to wear them nearly as much as she's supposed to and I can already tell she's losing some of the flexibility that she gained from the casting. That really, really makes me mad! I'm calling the orthotic place first thing Monday morning (they're closed today) and they better do something to fix this! These things are not cheap ($1500+), the least they could do is get them right!! I did increase her AM dose of Topomax this morning...now she's at 60mg 2x/day. This is her highest dose yet (remember we were going up, then we went back down, now were going back up again). I'm hoping and praying we'll see some improvement with this new increase! Please continue to keep her in your prayers!!
Thursday, December 25, 2008
Today has been a good day. Reagan slept well last night and when we woke at 8:15am, she was there wide awake laying in her bed kicking and squirming around but not making a peep. We drove over to Grandma's house to see what goodies Santa brought us all. Let me just say (God love her) my mom goes CRAZY over Christmas! I don't even know how many presents were wrapped under the tree, but way too many for three adults and one baby! Although I unwrapped the presents, Reagan seemed to enjoy the excitement of it all. She got tons of toys, clothes, bows, and books (she is the only grandchild in my family and it shows). She was wiped out by the whole process and went down for a nap right before lunch (perfect timing for us). We all ate way too much and will probably be dieting for months just to shed the extra pounds. It was a nice day and Reagan was a sweetie. I've posted some pics below so please enjoy and I hope each and every one of you has a wonderful, blessed Christmas!
Wednesday, December 24, 2008
Reagan's still not feeling quite right. Last night she woke up at 2am crying. I went and took her AFOs off (after only 3hrs of wearing them) and she managed to fall back asleep on her own. I don't know what we're going to do about these AFOs...they must be bothering her. She's been pretty fussy most of the day today and was running a low grade fever this afternoon. Maybe it's teething?? Who knows. We did manage to make it through the entire Christmas Eve service without an incident. She looked so cute in her little black velvet dress. She took a little nap afterward and woke up feeling much better. Mike's parents came by and she was in a great mood. She has been super talkative tonight. Lots Gagaga's and things that sound like Mama and Dadas. Her vocalizations are so sporatic though...I just wish she'd say something on a regular basis! She's all decked out in her Christmas PJs...now if we could just get her to go to sleep! If she only knew all the loot that was waiting for her at Grandma's, there's no way she would be able to sleep! Well, I'm off to fix her some strawberry milk and try to get her full and sleepy! Sweet dreams!
Tuesday, December 23, 2008
Reagan has been a real turkey the last couple of days. It's just so out of character with how she's been lately. I don't know if maybe she's coming down with something or what. She'll go into these crying fits out of nowhere. She was doing it last night and then again this afternoon. If she doesn't watch it, Santa is going to take back all of her presents. Too bad she doesn't understand that concept yet. I just don't think she's feeling quite right. This morning after therapy she fell asleep (before eating her morning bottle) and slept for 4hrs straight. I even woke her 1hr into it to feed her so she wouldn't starve and she never batted an eye, just drank the whole thing fast asleep. I eventually had to wake her up or she probably would have slept longer. Maybe it was seizure related. They have been relentless today. I just don't know anymore. It seems every time we increase her medications, she has an increase in seizures! That's not how it's supposed to work. Please keep this in your prayers. She definitely deserves some relief in this area. That's my Christmas wish.
Monday, December 22, 2008
Reagan woke up early again today at 5am crying. I picked her up and she settled down. I laid her down beside her Daddy and fixed her a bottle, but then out of no where the crying started again. I'm not sure what it was. She continued to fuss and cry until 6:40am or so when she fell back asleep. Something was definitely bothering her. I did put her AFOs on overnight (only for 6hrs or so), and that little toe is still really red. We took a trip today back to the orthotic place. I almost left her at home with Grandma, but I went ahead and took her along and I'm so glad I did. The orthotist was able to squeeze us in as a walk-in and he even did the casting for her night braces while we were there. These things are going to be monstrosities. They go all the way up to the top of the thigh...but they are made specifically for sleeping so they should be more comfortable to sleep in. Reagan was SO good with everything. She just laid there as he wrapped plaster all the way up her leg! Her little diaper was covered with plaster and water. As far as the AFOs go, he recommended taking a day off from them to let her toe heal and he cut away a little groove in the inner boot to make more room for that toe. Hopefully that will do the trick. Today has been another day without therapy or time in the stander. We'll make that up tomorrow. Reagan took a long nap this afternoon and has been a little feisty ever since. I know how that is, waking up from a nap feeling worse than before. Of course, who can blame her. Her seizures have been way too frequent today. Lots of twitches and clusters...at times they are almost nonstop. Maybe she'll do better with the next increase? One has to hope. Please continue to keep her in your prayers.
Sunday, December 21, 2008
There is definitely the beginnings of a blister on the side of Reagan's foot. It's coming from some padding they added on Friday to the inner boot of her AFO. There is a definite seam that lines up directly with the red spot on her foot. Needless to say, it has to be fixed or it will be a blister in no time! Hopefully I can just run by tomorrow and show them what needs to be done and they can fix it quickly. I'm getting really sick of going back and forth to this place! Can they just get something right?!?!? Today was the first day since getting her casts off that I didn't put her in the stander. It probably worked out better that way, she doesn't need to irritate that foot any more than necessary, and she deserves one day a week off. Poor thing, her whole life is one therapy session after another! Today was her day of rest. And mine too. She's been such a sweetie again today. This girl is definitely on Santa's nice list this year!! I can't believe that Christmas is next week! I still haven't even mailed off our Christmas cards!! Oh well, better late than never!
Saturday, December 20, 2008
Not much to report today. Reagan did wake a little early this morning at 5:45am. I took her AFOs off (after only 7 hours or so) and her feet were pretty red (the first time they've been red after wearing them at night). I don't know if it's the adjustments that were made to them (and they need to be refitted) or if it's just because she's finally positioned correctly in them with the straps tight and her heal securely in place. I sure don't want her getting a blister from these things. Seizures have been pretty rough today. I'm not sure if it has anything to do with yesterday's increase in Topomax. This morning she was having quite a few that were clustered right on top of one another. Poor thing. She's a trouper though...she's been in a great mood all day today. She's actually had a lot of good days lately. She really is a doll. Cuddly and sweet...such a little love. She's been spending 30-45min a day in her stander no problem. I should probably try to do it twice a day...but it seems there's just not enough time in the day to do everything we need to do. Please continue to keep her in your prayers!
Friday, December 19, 2008
We went back first thing this morning to the Orthotic place to get another opinion on Reagan's new AFOs. The guy we saw today definitely knows his stuff and agreed that they are not the best fit. He suggested a couple things. He wanted to redo the brace with an adjustable ankle joint but Reagan's PM&R doctor (that has to write the prescription for it) already talked him out of it. He did make some adjustments to the ones we have, so hopefully they'll fit her better from now on, otherwise we'll have to go back in again. He also thinks she needs a special night orthosis. It will give her an additional stretch on her foot while she sleeps (and is relaxed). It's going to be kind of bulky (it will start above the knee) and it's custom fitted specifically for her, so it's going to be expensive...hopefully the insurance will cover it. This afternoon we met with a new feeding therapist. I really like her, she came highly recommended, the only issue is she's at a therapy place 30min from our house. Right now Reagan's not getting any feeding therapy and I think it's an area that she really needs some work, so we'll probably start that up sometime in January. I did finally hear back from her neurologist today. Her Topomax levels are 12, which is apparently a midrange level. He thinks we could definitely go up some more and hopefully see improvement, so that's the plan. I increased her PM dose back to 60mg tonight andwe'll see how she's doing next week at that dose. Please keep this in your prayers! All I want for Christmas is less seizures for this precious girl!!!
Thursday, December 18, 2008
Reagan woke up early this morning and has been an absolute angel all day! She had a day full of therapy today, so I'm glad she's been so cooperative. She had OT this morning at 9am. Her OT mentioned this today and it's something I've noticed a lot lately...Reagan has been much more interested in toys. There are a few specific ones that will hold her interest for 30+min, which is amazing! I don't know if it's vision related or what, but she really seems to be zeroing in on them (instead of looking past them like she used to do). She had a great OT session, had a 30 min bottle break, and then had speech. She wasn't very vocal, but she was such a good girl. She was so worn out by the end, she was falling asleep in her chair. We went home and she slept until her afternoon therapy...PT at 2pm. She did great at PT as well. Reagan's physical therapist confirmed what I was already thinking...her new AFOs just don't seem to be fitting properly. They're a little too big on her and they are not flat enough to stretch her as much as she needs (to maintain the flexibility from casting). So we're going back in first thing tomorrow morning to see what they need to do. I'm afraid they're going to have to redo the whole casting process, which means we may not get new AFOs until after Christmas. Hopefully they can expedite them. Still no word from the neurologist on the results of the Topomax levels, that's really going to tell him which direction we need to go with the medication, so please keep that in your prayers (she's still having way too many seizures).
Wednesday, December 17, 2008
As predicted the 8pm bedtime did not work out very well. Reagan woke up at midnight wide awake and raring to go! I fed her a bottle, but I was exhausted and barely able to keep my eyes open. When she was done, I put her in her bed and then watched her via video monitor. She didn't make a peep, but she was movin and groovin in there! I don't know how much longer she was up, but I admit, I was probably out pretty quick. We did finally make it to see Santa today. The pictures could have been better, she wasn't opening her eyes much, but oh well. Reagan was in such a great mood all day long, it was the perfect day to run around with her. I'm embarrassed to say that this was my first trip to the stores this holiday season. I LOVE the Christmas season, but I admit it's been hard to get into it this year. Money is tight and my mom already bought everything I wanted to get for Reagan, so there hasn't been much of a reason to get out into the stores. Reagan was a dream today, she was content in her stroller (which never happens) and we were able to just push her around from store to store without a peep. Then this afternoon we went to pick up her new AFOs. They didn't turn out at cute as I had hoped (they look a little 80's to me). I prefer the purple butterflies over these but it's too late now. I'm not sure how well they fit her, they seem a little big and not as flat as they should be, but what do I know. I'll have her PT look at them tomorrow. She wore them for 30 min in the stander tonight and was a little red afterwards, but most if not all of the redness was gone 30min after taking them off, so hopefully they're OK for her to sleep in. One thing I have noticed...the last casts her orthopedic put on her he pushed too hard inward and her big toes were squashed on top of her other toes. On her left foot it didn't seem to have any repercussions, but her right foot is totally turning outward now. I think that mistake single handily screwed up her foot! Hopefully by wearing the AFOs will straighten it out. I'd hate to think we would have to recast her again just to straighten out his screw up!!
Tuesday, December 16, 2008
Reagan slept well last night (even going to bed early)...but she also woke early at 6am. She had OT at 9am this morning and she had a really great session. She was very alert and did a lot of weight baring on her arms (which is something she's not typically a fan of). We came home and she took a long nap. I went ahead and just let her sleep through PT because I found out today that she's running low on PT sessions (the insurance will only allow her to have 2 more sessions for the year), so I figured we'd spread them out a little with one this week and one next week. This afternoon she had vision therapy and she did the entire session standing in her stander! Her therapist brought this Christmas toy that Reagan just loved. It was a stage with 3 snowmen on it and when you press the button they twirl around and sing the song "there's no business like snow business", she was just fascinated by it. It was just perfect for her...the colors were black, white, and red (high contrast- perfect for her to see), they were dancing (and it's easier for her to see moving things), the song was loud but entertaining, and it even had lights that flashed up on them as they danced. It's one of those things I would LOVE to find for her. I go on these quests for specific toys for Reagan (usually things I see at therapy) and I'll look for them for months and months without any luck. Usually it's educational things I'm looking for, but the other day I saw a little girl wearing the cutest shoes and I've been on a quest for those shoes. They were little pink leather mary janes that squeaked when she walked on them!!! SO cute! I looked online and found a TON of just such shoes (all extremely cute)...now I have to make a decision on which pair to get. I'll keep you posted. Reagan was really worn out tonight and passed out cold at 8pm...without her medicine. I had to force it all down her throat and attempt to get her to swallow it (hopefully she got it all down). It's crazy, when she goes out like that there's just no dealing with her, she's OUT. I'm hoping she'll sleep the night through, but who knows, 8pm is very early for her. She may be up and ready to go at 2am! We're still waiting on the results of her blood tests before deciding what to do about her medications...please continue to keep her in your prayers!
Monday, December 15, 2008
We went in this morning for Reagan's 3month ophthalmology checkup. Reagan was impossible, keeping her eyes closed or just barely open most of the time, it's hard to do an eye exam that way. Her doctor is really just watching her right eye which was showing some slight signs of a secondary cataract. It's basically just some scarring from when they removed the lens (sometimes they don't get all of the cells and the ones left behind begin to proliferate causing a cloudiness similar to the cataract itself). Luckily she said that it hasn't gotten any worse, she can still see around it and clearly see to the back of Reagan's eye, so for now it's OK and we'll just monitor it every 3months or so. We went from the eye appt to get some blood drawn from our favorite phlebotomist (the neurologist wanted to check her topomax levels as well as just a regular check on her counts). We ended up waiting over an hour (it's worse when you ask for a specific person) and Reagan was very irritated with the whole process. So needless to say she was less than thrilled with the blood draw (although it otherwise went very smoothly)...the fussing turned to screaming which continued non-stop for two hours! We're talking insane, hysterical crying (we were planning on going to see Santa today, but Reagan had other ideas). I thought for sure it had to be tummy related, but Grandma kept saying she thought it was just a tantrum gone wild, and who knows she might be right! Usually if it's tummy related it ends with a stinky diaper...but not this time. She finally just wore herself out and fell asleep. Maybe it was just a tantrum? She woke up in a much better mood (thank God). I put her in her stander for 40min today with little to no complaints. She does get a little red from the AFOs after standing for a period of time, but sleeping in them over night doesn't seem to cause any irritation whatsoever. Hopefully the new ones will be more comfortable for her. She's got OT, PT, and vision tomorrow...should be a busy day! Please continue to keep her in your prayers...we really need some days with less seizures!!!!
Sunday, December 14, 2008
Last night was a good one for sleep thank goodness...I sure needed that (she was wearing me out). I noticed this morning that Reagan was doing a lot of twitching (Mike said he noticed her doing it yesterday morning as well). The almost nonstop twitching of a foot or hand that she was doing a few months ago and an EEG confirmed that they were non-epileptic. What's strange is that with this increase in twitches, she's had a significant decrease in spasms today. I have no idea how it's related, but I'm glad to see less of the bad ones. She wore her AFOs last night for 9hrs straight with no redness or irritation. I also worked with her today on standing. I put her AFOs on her with her little tennis shoes made especially for the AFOs (which I'm going to have to buy new ones to fit over her new bigger AFOs) and I put her in her stander. She was in the stander maybe 20min or so when gravity did its thing and I was afraid she had had a blow-out. Luckily no, but we did move out of the stander and on to practicing walking. I held her from behind and I'd move one leg forward using my foot and then the other. Although I was doing most of the actual "stepping", she seemed to like it and she was doing a great job weight bearing and standing up tall. Then I took her over to the sofa and held her up in front of it. She's much older than the typical baby just learning to stand and she's so tall now, she kind of hovers over the edge. But she was putting her arms out and kind of leaning over on them, while still keeping her legs straight, so I was pretty impressed. Usually she tires very quickly and bends her knees and puts her butt out trying to sit down, but she was doing a great job. This girl is going to walk. No doubt about it. It's just a matter of when. We saw a couple of television church services this morning (before heading out to our church) and both of them were preaching similar messages. You have to have faith...even in the toughest of times...because nothing is beyond God. He can do anything and heal anyone. It's funny, often times I think about God healing Reagan or stopping her seizures through this medication or that medication...but imagine if He just did it. Regardless of medication or what we were doing for her. Wouldn't that be a bigger testimony to Him? Now, God's plans are not always our plans (boy don't we know that)...but sometimes they are better! So we're staying faithful that this little girl is going to blow the minds of all of her doctors and exceed even our highest hopes!
Saturday, December 13, 2008
Reagan's tummy pains are now officially back. She had some today (and a bout of it last week) that led to a 1.5hr crying fit and ended shortly after a dirty diaper. It's just crazy that she didn't have any of these crying fits/tummy pains when she had the nasty stomach virus that caused her to go several times a day! I bought some probiotics a month or so ago, that I was going to try to give them to her to help with digestion and maybe provide some relief...but I just never started her on it. She got sick and was taking so many additional medications, I didn't want to add anything new to the mix. But now might be the perfect time to try. Other than the fit, she's been super smiley and good most of the day today. She slept in her AFOs last night (7hrs) and her feet seemed fine afterwards, although I did put them on her today for only 1.5 hrs and when I took them off her heels were really red. I'll be glad when the new ones are ready. I also put her in her stander tonight for the first time in a while. She tolerated it pretty well for about 25min but then was ready to get out. Here are a few pics of her today...
Friday, December 12, 2008
Last night was a long one. Reagan has been doing this thing lately where she'll get sleepy around 7pm and want to take a nap (pushing her actual bedtime back to Midnight or so). Apparently most kids go to bed at a normal time around 7-8pm, but Reagan still has medicine to take and another bottle to drink at this point. So last night I tried it out to see how she would do if we just let her sleep. She fell asleep around 7, so I had to give her her last bottle while sleeping (she even drank it faster and with less resistance than when she's awake) and I even managed to giver her the PM doses of her medicine while she was sleeping. I put her in her bed and that lasted until 2am when she woke up and was wide awake...that's why we don't put her to bed so early! I was up with her until 4am, when I finally just laid her in her bed, she wasn't exhausted but I was. She only whined a little and then thankfully went to sleep. We took her to the Orthotic place this morning. She has outgrown her old AFOs in just 6 months. They recast her for new ones (pink and purple plaid) but they won't be ready until Wednesday . It's sooner than I thought but she can't go that long without wearing anything at all. So they reshaped her old ones and without the inner boots we were able to get them on her. It's not a perfect fit, but it's going to have to do until the new ones are ready to go. They couldn't tell me how often she needs to wear them...it's just trial and error (sound familiar). How ever long her sensitive skin can tolerate it. I finally finished decorating our Christmas tree today (with help from my mom). I hate waiting this long to do it, but we have been busy. Please keep Reagan in your prayers this weekend, she really needs some relief from these seizures.
Thursday, December 11, 2008
Yeah...the casts are finally off!!!! Reagan wore them for 5 weeks total. Her feet look SO good. They are totally flat now. They're a little bruised and very dry and scaly...but they are so flat!!! It's amazing, her balance has even improved now that she's standing on her entire foot (instead of just her tippy toes). We're going in tomorrow morning to get her recasted for new AFOs (not new casts). It usually takes 2 weeks or so to make them, so she'll have to wear her old ones until then (mainly at night). I'm not about to let them go back to the way they were before the casts! I am going to have to be vigilant about putting her in her stander from now on (somebody stay on me about that). She had PT this afternoon and she was back in the walker once again. That's the next piece of equipment we need to get for her. Speaking of, we just heard back from Variety and it looks like they are going to give us $2500 to use toward the purchase of equipment for Reagan. I had really all but given up on them (considering I sent in the application over 4 months ago), so I was beyond excited when I finally heard back from them with the good news! Now that we finally have insurance approval on the seating system (and hopefully we'll have it by year end), we can probably use most of this new funding towards getting her a walker. It really has been an answer to prayers that we were able to get insurance approval for the seating system and additional help for any out of pocket expenses! Now if only we could do something about these stinking seizures! They've been bad today as well. I'm still hoping that as we lower the topomax, her seizures will follow suit. Please keep her in your prayers.
Wednesday, December 10, 2008
We took Reagan into therapy today for pictures (not therapy)! That's right, her physical therapist's mother (the one that already took pictures of Reagan) donated her time (and energy) today to take pictures of the kids that have therapy there. She actually had sign up sheets for this Wednesday and next Wednesday...we signed up for both days just in case we didn't get a good shot on the first go round. Reagan was in a great mood and smiling a lot, but she just did NOT want to open her eyes. I'm not sure how they'll turn out, but hopefully she got a few good ones. Seizures were still rough today. I spoke with her neurologist (at 5pm this afternoon) and he agreed with lowering the topomax (to the level that I already lowered it) and wants to check her blood levels on Monday when we take her in for an eye follow up. I'm so fed up with doctors! I just want to find someone that cares about Reagan, are there any doctors out there that genuinely want to help their patients?? I don't think we've found one yet. Please keep this in your prayers. On a completely different note...it's snowing in Houston!!! For those of you that are not from this area...it NEVER snows here (well once in a blue moon maybe)! This is Reagan's first snow and Bear's second. He enjoyed it a lot more than she did. Hope you enjoy the pics!
Tuesday, December 9, 2008
In totally unrelated news, we got a new car today. Talk about a fiasco. Let's just say we started this process on Friday and it's taken this long to finally get all the kinks out and papers signed. We upgraded our Volvo sedan for the Volvo SUV. We actually did a lease and are now paying significantly less for a more expensive vehicle...funny how that works. Today was Reagan's busy day of therapy. Unfortunately she's been pretty floppy with lots of seizures all day. OT went well enough this morning but she was wiped out afterward and slept until PT at 2. She woke up and had almost non-stop seizures for 2 hrs straight. Then she took another nap and woke up just in time for vision therapy. Today wasn't a regularly scheduled vision session, it was a make-up session since her therapist missed all last week. It was neat because her previous vision teacher came to make it up and we haven't seen her in months. She seemed impressed that Reagan was reaching out to touch/grab things so much more than before. Making small progress in spite of these stinking seizures. Poor girl...this has got to stop! I put a call in to her neurologist today. I'm pretty sure he's going to want to go back down on the Topomax, so I lowered her pm dose tonight back to 45mg. I'm at a total loss for what to do. Please keep her in your prayers.
Monday, December 8, 2008
Reagan went to bed early last night and for once we followed suit. Which is probably a good thing because she woke up at 4:30am. She fussed a little but then settled down and either went back to sleep or just became very quiet until 5:30am. At that point she was definitely up but at least she was good. I gave her a bottle and she fell back asleep around 7am. She's been in a great mood all day today. Super talkative again. I wish I would have gotten this on video...it was nonstop! Too bad she didn't have speech today. Actually all of her Monday therapies were switched to Tuesday this week, so hopefully she'll be good tomorrow as well. She's got OT, PT, and then vision. It's going to be a busy day. We're so excited...Reagan gets her casts off on Thursday! Finally!!! After talking it over with her physical therapist, I think we're going to just put her AFOs on her at night (since she's already used to sleeping with casts). That way she'll stay stretched out, but she won't have to wear them 24/7. She's probably going to kick up a storm once they are off. I'm guessing it's almost a feeling of weightlessness, after having those heavy things weighing her legs down for so long. Below is a picture of our little angel. How cute is she?
Sunday, December 7, 2008
Today was another lazy day for us. Mike finally took down and assembled the Christmas tree and put up the wreath over the garage. I had the easier job of separating and "fluffing" the branches on the tree. Sounds simple, but it's surprisingly time consuming and it does scratch the heck out of your hands. Still no ornaments up yet...baby steps. Reagan has had a pretty good day. It seems we've seen the last of that virus, so much so we've started back up on her daily regimen of Miralax. She was fussing and seemed to be having some tummy pains tonight before bed...it's strange how she was having less abdominal pain and discomfort with the severe diarrhea than she does on a regular basis. It doesn't really make sense. I think she's probably having some gum pain too. I noticed a few days ago she has two more teeth that have finally broken the gums (the bottom right second tooth from the middle and the bottom right molar). That makes nine teeth now!! She was running a low grade fever tonight and I'm guessing that's why. Hopefully we can get her 100% soon, so we can make a clear assessment about what direction to take with her seizure medications. We have got to get something to work for her! Please keep her in your prayers!
Saturday, December 6, 2008
You should have seen us last night trying to get Reagan's medicine into her! She just would NOT wake up! Finally around midnight, I was somehow able to get the last of it into her. Don't ask me how...it was Topomax sprinkles in a small amount of baby food and she was still out cold...I'm not really sure how it all worked out! Anyway, it was nothing short of a miracle that she slept the whole night through (considering she went to bed so early) but thank goodness she did. And then this morning she woke up a different baby. Very alert, ready and willing to eat, and no more diarrhea (as I'm sure everyone is thrilled to hear the end of the poop talk)!! She did wake up with a little something in her diaper, but the consistancy was much improved and she hasn't had anything else all day long (except several good wet diapers). We're hoping that she is finally done with this nasty, nasty virus. Thank you everyone for your prayers. Please continue to pray that we'll begin to see some improvement in her seizures this week.
Friday, December 5, 2008
Reagan has been so floppy today. She's had brief bursts of energy followed by super sleepy floppiness. She has been impossible to feed today as well. She clamps her gums down and you literally have to pry her mouth open to even get the bottle in it! And then she refuses to suck...so it just drips into her mouth...which she may or may not swallow! She's only had 10 oz of formula today and then she fell asleep without taking her pm dose of medicine. We're talking she was out like a light. There was just NO waking her up so I'm hoping to let her sleep for a little while and then try to wake her briefly to get the medicine down her and get her back to sleep. We'll see how that goes. I am concerned about her getting dehydrated. The plan is to see how she's doing in the morning and we may take her in to the pediatrician's emergency office hours tomorrow morning just to get checked out. After several people suggesting she may have Rotavirus, I read up on it and it sounds right on. Today is Day 10 of the virus (and Day 8 of diarrhea) so she really should be getting better soon, right? Please keep her in your prayers!
Thursday, December 4, 2008
So today is Day 9 of this horrible stomach virus. It seems like it's never going to end! I just hope we can get through this without a trip to the ER for dehydration. I know she's probably walking a fine line. On a good note, today is the first day that Reagan did not have a diaper blow-out and she continues to be in good spirits...on a bad note, she's still having multiple dirty diapers a day and her seizures are still just as bad. Reagan had OT and Speech this morning and she was very good for both. She's been very vocal today. Her vocalizations are just so sporadic...not even just day to day but minute to minute. Sometimes she's very vocal and sometimes she's completely silent (although some of that could be medication related). Today was definitely a vocal day. I actually took a video of it...I hope you enjoy it (sorry for the "rain" background noise). This is just a little snippet of her "talking". Please continue to keep her in your prayers!
Wednesday, December 3, 2008
The stomach virus issues continue. There's not much we can do but just give her fluids and pray that she gets over it soon. We had to move Reagan's physical therapy appt to this morning (because her therapist is going out of town), but she seemed to do really well with the time change. Her therapist noticed that she was much more alert than she's been lately, which is always a good thing for therapy. I did finally get a call back from her neurologist this afternoon. He didn't have much new input. Basically everything he said were things I had already considered...what exactly are we paying these doctors for if it's all just trial and error? Anyway, he said that it's possible the increased doses of Topomax are increasing her seizures (we could try going back down and seeing how she does) or it's possible that her being sick, first with RSV and now with a stomach virus, could be causing the increase. So the plan is to just wait until next week (when hopefully she's over this virus)...watch her to see if there is any improvement in her seizures and then bring her in to have her blood levels checked before making any changes. He doesn't want us to increase her dose as planned for tomorrow, because if she is dehydrated it could increase the chances of her developing metabolic acidosis (which is not a good thing). So...we're just holding tight until next week. He does not want to change any of the other medications she is on (much to our dismay) until we figure out what is going on with the Topomax. Please keep her in your prayers...between the seizures and this stomach virus, she's got a lot on her plate right now!
Tuesday, December 2, 2008
Reagan was a handful last night and did not want to go to sleep...but for Daddy she'll do anything and Mike was the one that was finally able to get her to go down. She woke up at 1:30am crying, I was hesitant to go get her but thank goodness I did. She had a full diaper which would have leaked had I not gotten her at that exact moment. I cleaned her up and laid her back down and she went back to sleep. She actually slept until 10am! Her ECI coordinator came by and was surprised to see how well she was grasping at and fixating on toys. We have definitely noticed lately that her eyesight seems to be improving. Her left eye is straightening out, which basically means it's getting stronger and she's using it more (since the surgery). She's even making more eye contact than before. The last few weeks I haven't even put any tape on her hands because they are rarely in fists anymore. She's opening her hands up and touching on things much more than before. She's also doing this cute little pointing thing with both hands...you'll put a toy in front of her trying to get her to touch it and she'll reach out with her little pointer finger to touch it...it's so cute. The other morning she was laying beside me in bed and kept poking me in the face! I'm not sure how purposeful it is, but it's definitely a new thing she's doing a lot. Reagan went all day today without a nasty diaper (the longest she's gone since getting sick) and then around 5:30pm she had one. I managed to changer her without too much of a mess. Then around 6:15pm she started crying...inconsolable crying. About 20min into it, she produced another dirty diaper that miraculously leaked out of her diaper, all over me and the chair, but didn't get a drop on her own clothes! I thought for sure that would stop her crying but no! She finally stopped an hour or so later when she fell asleep. Luckily she woke much, much happier. Hopefully we can get through the night without another incident. I spoke with her pediatrician's nurse today and she is definitely concerned about the potential for dehydration. She said a virus like this usually lasts for 7-10 days...so we could still have a while to go. She wants us to keep a close eye on her in the meantime. Please continue to keep Reagan in your prayers!!!
Monday, December 1, 2008
I don't know what we're going to do with this girl! She's still got a serious case of the poops! We went to OT this morning and on our way home she seemed sleepy. I went to pick her up out of the carseat and she had gone so much she was leaking out of her pants! It was everywhere (and filled with her am dose of topomax)! Poor thing! She has had two more full diapers since then as well. I know she has to be losing weight. She's eating about the same as before, but I don't think she's digesting most of it. She's been very floppy today as noted by both her OT and her PT. It's hard to say whether it's the Topomax or being sick...most likely a combination of both. Her seizures were very frequent this morning but have definitely tapered off a lot tonight (thank God). I put a call in to her neurologist today and heard back from his nurse about her topomax refill but no word from him. I guess I'll call again tomorrow. When you have multiple issues, they often call back regarding one but not the other. No surprise. Please continue to keep Reagan in your prayers...she really needs to kick this stomach virus in the butt!
Sunday, November 30, 2008
We're home finally. We spent the night and most of the day at Grandma' s. It was her birthday today, so she was happy that she was able to spend most of the day with our little princess. Reagan did not want to go to sleep last night, I stayed up with her until I was about to fall asleep myself, and then Mike finally got up and she went to sleep almost immediately (go figure)! Her tummy is still very upset. Lots of full diapers. We actually just changed a diaper and I noticed there was something in there that almost looked like strawberry seeds (sorry, I know it's gross but I have a point). It was actually little Topomax sprinkles! That can't be good if her seizure medications are just passing right through her undigested and unmetabolized. I would guess that it might be responsible for the increase in seizures, but we've seen an increase over the past couple weeks not just since she's been sick...either way it can't be good. I spoke to the doctor on call today (at her pediatrician's office) and she said that we just have to wait it out. It could last a week or so, but there's nothing much we can do. We just need to watch her for signs of dehydration and try to get her to drink as much as possible (which is never an easy task). Please keep her in your prayers for a speedy recovery (and less seizures).
Saturday, November 29, 2008
I'm so irritated with this stupid computer! I just typed out a whole post and it deleted it all. So here's the shortened version of it. We made it! We're back in town...just not back home until after the open house tomorrow. Reagan was a turkey on the drive home today. She was irritable and ready for a nap, but refusing to fall asleep! She cried and cried most of the way home. We did have a serious blow out. Not the tire sort of blow out but a diaper blow out! We had to pull over and strip her down to nothing but her casts...she had made quite the mess! Poor girl! She usually only goes every other day or so, but with this stomach virus she's been going several times a day for the past few days. I sure hope she gets over this soon! She's really been so good through most of it. I know she must not be feeling great but (other than the drive home today) she really has been a trouper. She still having so many seizures. I'm going to put a call in to her neurologist first thing Monday. I just don't know what to do anymore! She was doing really well on the Topomax for a while (but just like the vigabatrin) when we continued to increase it, the improvements we saw disappeared! I don't know. Please continue to keep her in your prayers!
Friday, November 28, 2008
Reagan took a late nap last night so she wasn't ready for bed until after 1am. I didn't mind sitting up with her, she was in a great mood and I had taken a nap that afternoon so I wasn't as tired as I would normally be. I can only imagine how miserable she must be feeling, because I haven't even thrown up once but I have this constant sick feeling in my stomach that is making me completely miserable. But you would never know it, she's been exceptionally laid back and sweet through it all. She made it the whole day today without throwing up (knock on wood), but she did have two major diaper blowouts earlier. I guess it has to come out one way or the other! Poor thing! I was hoping this was a 24hr thing, but if so it would already be over by now and my stomach is saying it's still not over. She's not eating well, but she's getting enough and I'm trying not to push my luck in that area. We have just been very lucky that Reagan is sleeping and sleeping well despite being sick and in a new environment. We're going to be heading back to Houston tomorrow, so please keep us in your prayers. Our house was just listed today and they are doing an open house on Sunday, so we'll probably join our dog at my mom's house until then. I upped Reagan's nighttime dose of Topomax yesterday to 60mg. So now she's at 45mg in the am and 60 in the pm. I sure hope this gives her some relief from these seizures. It's so frustrating because it seems the more we increase these medications, the more her seizures increase!
Thursday, November 27, 2008
Well...she's definitely sick. Reagan had another large throwing up incident last night before bed (and another today) but somehow she managed to sleep through the night. We're very thankful for that! I have been feeling nauseous all day, it started last night and hasn't gone away (and eating too much for lunch didn't help in the least). It must be some sort of stomach virus. And now Mike's starting to come down with it too. Yuck!! Despite the current wave of sickness, we still have a lot to be thankful for this Thanksgiving. A year ago today we were still dealing with an extremely fussy and irratable child who never slept a night in her life! Seriously, we were getting up every hour or two every single night! And Reagan's irritability did not make her an easy baby to deal with day or night. But now she sleeps (in her own bed) and she's such a joy to be around. She's just so much more happy. She's so smiley and cuddly, she really has become such a sweetie! Don't get me wrong...she still has her days (and nights) when her tummy is hurting her and she's screaming and crying, but overall she's a much, much better baby. And for that we are SO thankful. It's my prayer that next thanksgiving we are thankful to finally be rid of seizures! How wonderful will that be? It seems so impossible and so out of reach, but just a year ago we thought the same way about the sleeping. Please continue to keep that in your prayers! And last but not least, I want to thank everyone that takes time out of their day to check in on and pray for this little princess. Friends and family that love us and our little girl and the complete strangers we have met and the friendships we have formed are indeed priceless! We do have a lot to be thankful for.
Wednesday, November 26, 2008
Reagan woke up once last night around 4am, she cried out and coughed, but immediately went back to sleep so we didn't think anything of it. Then this morning Mike went to pick her up out of bed and there she was laying there throw up down her neck and all in her hair and on her bed. Poor thing! Reagan does not throw up often, so this is a strange occurrance and made me suspicious that she might be getting sick. We gave her a bath and put clean clothes on her and it struck again, she gagged and threw up again (it was mainly spit because she hadn't even eaten anything at this point). So I was thinking, that's it. So much for our Thanksgiving plans. I thought we would be homebound with a sick baby. But she seemed fine the rest of the day. She wasn't eating much and she was sleeping more than usual, but she was holding down her food and she wasn't running a fever so we took to the road for the 4+hr drive to Mike's parent's house (late this afternoon after finally finishing the last of our home improvements). She was a little fussy and did have another throwing up incident (although I don't know if it was because she was choking on the tylenol I was trying to give her or if she was just sick), but we made it. And she's been good ever since. I'm anxious to see how she sleeps tonight in a new environment...hopefully well. Seizures continue to be worse. I don't know what's going on. It's just so frustrating. They had gotten so much better and now (all of a sudden it seems) they've gotten worse. Ugg. So frustrating. She needs some prayers in this area...no more seizures please!!!
Tuesday, November 25, 2008
Reagan slept well last night and has been such a sweetie all day. We took her in for recasting this afternoon. She was very good when they took them off (but not so much when they put them back on). Her feet look GREAT! When they took the casts off, they were completely flat! Even the doctor seemed pleased...but he thought she would benefit from one more round. Two more weeks and they're off. Of course, we're supposed to keep her in her braces a lot once the casts are off (her doctor said 24/7 but that's not going to happen)...but at least we can take them off and give her some breathing room! We've still been hard at work all day doing more home improvements. I think we're setting a new record for the amount of work done in such a short amount of time! We did find out today that they did not accept our offer on the house we were hoping to get. We're pretty bummed out about it, but I'm sure it will all work out for the best. Maybe the offer they accepted will fall through and we'll still get it, or maybe it wasn't the right house for us and we'll end up in something even better. We'll see. Right now the plan is to try to sell this house now and keep looking for something new. It looks great...like a model home. Hopefully we can keep it up. We're heading out tomorrow to go to Mike's parent's for Thanksgiving. I'm a little nervous about Reagan being in the car that long. She doesn't sleep as much as she used to in the car, I just hope we can keep her content. We'll probably wait to leave until she's ready for a nap and then hope for the best. Please continue to keep her in your prayers. She had some yucky seizures earlier and I just want some relief for her.
Monday, November 24, 2008
OK, I'm getting a little sick of the home improvements (for a house we are hoping to be out of in the near future). We've tackled several more things on our list but still have more to finish before our realtor lists it on Friday and has an open house on Sunday. I'm pooped. Reagan was up from 4-5:30am this morning. She was super cranky and irritable but cheered up and finally fell back to sleep shortly after a dirty diaper. The tummy pains strike again. I just don't know what it could be. Is it that she's just too sensitive and normal gas pains are more painful for her than most people? Or is it something else altogether? I've always felt like they were missing something not looking into that further, but now we've been to the top GI doctor at Texas Children's and she can't find anything either. Who knows. God knows. I sure wish He'd shed some light on it for us. The seizures have also been pretty hairy today, although I do think she's teething again and running a low grade fever, so I'm hoping for a simple explanation like that. I'm just so sick of the constant second guessing...is it the increase in medicine, the decrease in medicine, teething, a virus...what the heck is it?!?! I want to see less NOT more!!! Reagan has been in a good mood most of the day except for a few crying fits tonight (which I would guess are teething related). I'm hoping for a good night's sleep tonight. Tomorrow afternoon she goes in to get recasted. I'm curious to see how her feet look after being on twice as long this time. I am a little nervous about having them redone right before we go out of town for Thanksgiving, but hopefully they'll be OK. Please continue to keep her in your prayers!
Sunday, November 23, 2008
We've had a pretty busy day today...luckily we all had a good night's sleep last night (thank you Reagan). This morning we went to church. Reagan was very well behaved...not a peep. Then we went and looked at a new neighborhood they are building several miles south of where we live now. There was a particular house Mike had found online that we wanted to see. It was nice, but it had a funny layout. At this point Reagan was getting a little tired and irritable. We came home and she took a nap. I ran to the store and Mike began on the home repairs. We've got a list of them. He did finish several things today...installed a new light by the front door, painted the door bell cover, & replaced the molding around 3 doors. Meanwhile, I managed to break a light while trying to clean it. Our house is all staged now and is more decorated and accessorized than it has ever been. It's funny how you make all of these changes and improvements when you go to sell your house but not when you are actually living in it! Now we just have to attempt to keep everything neat and clean until it's listed (and sold). Good luck! We had some friends over this afternoon with two little ones and things got a little rowdy! We forget how inquisitive and into everything most kids are. We (unfortunately) don't have that problem with Reagan. Oh to have to worry about her getting into everything...hopefully we'll get there someday! But she has been a sweetie today! Completely sweet and laid back. Hopefully she'll keep it up tomorrow for therapy.
Saturday, November 22, 2008
So it would figure that as soon as I brag about Reagan's sleeping, she would have a monster of a night last night! She was crazy fussy and every time I would put her down she would fuss,whine, and cry. She was also very restless, she would only sleep for 15min-1hr and then she'd wake up again sounding miserable. And it was a miserable night for everyone (I still have no idea why she was behaving that way. We have all been pretty exhausted today. Both Mike and I had to get up super early for a garage sale we were having at my mom's house. She did most of the work but we managed to sell a lot of the junk from both of our garages (and what we didn't sell, we gave to charity), so we had a pretty busy but productive day. I was feeding Reagan a bottle a few hours ago and I was dozing off...I'm so tired. Reagan is sleepy too. She was just sitting on the sofa beside Mike (propped up) and her eyes were barely open, and she let out a little laugh and then another and another. It was too cute! I tried to run and get the video camera but as soon as I came back with it, she stopped. We're all getting a little loopy...it must be time for bed!! Good night!
Friday, November 21, 2008
Reagan slept well again last night. She's up in her room (about as far away from us as she could get), sleeping away like an old pro. The sleep is doing everyone some good, I think. Definitely an answer to prayers. She's been very alert and talkative all day today. In fact, I don't think I ever remember her "talking" this much in one day. We went to the eye doctor today with Daddy and he said he could hear her acting crazy all the way from the examining room! As long as I kept a bottle in her mouth she would settle down, but the second I took it out you couldn't shut her up! Her seizures seem a little more intense today, numberwise they may actually have been less, but some of them are so strong they take my breath away. Come ON Topomax! Sometimes it seems as if she's never going to get rid of these stinking seizures! But then I think back to a year ago when we were lucky to get a few consecutive hours of sleep and it felt like it would never end...but it did (thank God)! And I know the seizures will too (I just wish it would happen sooner rather than later). Please continue to keep her in your prayers!
Thursday, November 20, 2008
So Reagan did sleep through the night last night...she tried to wake up around 10:30pm and I thought for sure we were going to be up all night, but she settled herself back down and was out for the night. She slept ~11hrs straight (a new record) and she woke up in a great mood. One of her therapists canceled, so she only had 2 therapies today but they both went well. We got to therapy to find out her OT wasn't coming in, but her PT was able to step in and we just did PT first thing in the morning. She tried out a new walker, which was pretty neat, and I was impressed to see her trying to take steps even in her heavy casts. She was a little worn out of speech, but at least she was happy. She's just been so smiley lately. So cute! I just love that toothy grin. We are going to have to give it another try with the photo shoot, so maybe this time we can get a few smiles.
Wednesday, November 19, 2008
As I'm writing this I know I should probably be in bed taking advantage of the fact that Reagan finally fell asleep at a reasonable time tonight. Although, I admit I am a bit leary that she's actually down for the night (at 9:15pm), but we'll see. Last night she was a maniac! There was NO getting her to sleep. At midnight, when Mike headed to bed, she was wide awake! Almost crazy awake...eyes peeled open, pushing up on my chest and looking all around. She just did NOT want to go to sleep! I would lay her down and she'd fuss and then scream, but the second I'd pick her back up, she'd be fine. I believe that's what you call a B-rat. Finally I gave up and just laid her in her bed...time to cry it out. I think it was more traumatic for me than for her. Mike kept telling me to just turn off the monitor, but I just couldn't. She fussed and cried for about 20 min before she fell asleep (at 2am)...but she did sleep through the night! At one point when I was up with her I remember thinking, I can't remember when she last had a seizure (and then, almost as soon as I thought it, she had one). I hate these stinking seizures. They were actually much improved yesterday (knock on wood)...although today I think they were back up. Tomorrow is another increase in topomax...45mg 2x day. I just hope it doesn't make her more floppy than she already is. She's been quite the noodle, but at least she's been good. Tomorrow she has crazy therapy schedule. OT 9am, Speech 10:30am, and PT 2pm. I'm not sure how or if this is going to work, but I guess we'll see. Please continue to keep her in your prayers!
Tuesday, November 18, 2008
Last night, Reagan's first night sleeping in her own room, went well for the most part. She got a second wind last night and then wouldn't go to bed until 1am. I kept trying to get her to go down but she was not having it. That seems to be the pattern lately...she's floppy and sleepy all day long and then at night she really perks up and becomes much more alert. Not the best pattern. But once she went down, she did sleep through the night!! Awesome! Such a big girl. It's so cute to see her lying in her bed with her arms raised up over her head. She never did that in her swing. Oh my gosh, I felt like the worst mother ever today! I propped Reagan up on the sofa between some pillows (like we always do) and went in to the kitchen for a second to get her a bottle and she sneezed. I came back in the room and she was laying on the floor! No crying, nothing. She was perfectly fine...I guess. I felt SO bad! Poor thing. I did finally hear back from her doctor today. He wants us to just keep everything the same for now with her other medications and to continue with the weekly increases of topomax. He said that for Reagan's weight she's still not even halfway to the max dose yet (200mg day). We're still holding out hope that topomax will be "the one". Please keep her in your prayers.
Monday, November 17, 2008
The last couple of days have been a little hectic trying to get things packed away in order to get ready to sell our house. I'm sure it's only going to get more stressful once it's listed and people start coming to see it. I'm not big on having people over to begin with...I always feel like everything has to be just right...and when you're selling your house first impressions are everything and everything does have to be just right. I just have no idea how that's going to happen. Should be interesting. Reagan has been very floppy and kind of out of it today. I guess it's the increased clonopin, I just hope she adjusts to it and snaps out of this stupor. Her OT was canceled this morning, so she just had PT this afternoon. Her therapist couldn't get her to put weight on her legs for anything. She was like a wet noodle. She's been pretty sleepy today too. I just hope she sleeps tonight. Tonight will be a new first. She's going to sleep in her crib in her room! The first night she's ever slept in her room. We moved her crib back upstairs into her room, so that we could make the dining room a dining room once again. Seizures are still the same. I put a call in to her neurologist today to ask him about it and I never heard back from anyone. I'm sure all of the seizures contributed to her being so dazed today. So frustrating. Please keep her in your prayers.
Sunday, November 16, 2008
Reagan has been a little kooky today. She woke up happy but she was pretty floppy (must be the increase in clonopin). Then she started getting fussy and the tummy pains came on full force. She filled up a diaper but the crying continued for another 2hrs. We're talking non-stop, nothing will soothe her hysterics. Her little eyes were so swollen from all the crying. It's so frustrating. I just wish there was something we could do for her. She slept for a couple hours and woke up in a much better mood. She's been fine the rest of the night...albeit a little crazy. Full of energy and sqwirming around (a complete turnaround from this morning), when she should be tired and ready for bed. She and Mike were going back and forth earlier squealing at each other. It was too funny. She loves her Daddy. Hopefully she'll be in a good mood tomorrow. She's got OT early in the morning and then PT in the afternoon. Busy day. Please continue to keep her in your prayers.
Saturday, November 15, 2008
Reagan has been in a good mood today. This morning we dragged her along with us to look at some houses and she never made a peep (of course she slept through most of it). We've been living in a two story house for 5 years now and we NEVER go upstairs. It's just wasted space that we heat and cool for nothing. We've been thinking about getting a one story house for quite some time and since we don't know when Reagan's going to get around to walking, it makes more sense now than ever. We also would really like to have an area that we could convert into a therapy room for her...somewhere other than her bedroom where we could put all of her equipment and developmental toys, to use when she needs them at the same time keeping them out of the way. There is one particular neighborhood we are leaning toward in Sugarland but it's about 30min away from where we currently live and it will require us to switch most of Reagan's therapy services (which I'm not too thrilled about). We'll see what comes of it. Meanwhile, I'm trying to straighten and pack up lots of junk out of our house in case we find something we like and need to sell quickly. It seems the more I try to organize, the more I just make an even bigger mess of everything. Speaking of, I made a change today to Reagan's medication. I added back the 1/2 pill of clonopin we had taken away. Her seizures have just been so much worse in the last week or so, I had to see if maybe that was the catalyst (that's probably why she was so sleepy this morning). We were seeing so much improvement for a while seizurewise and then pow...they're on the rise again. Please keep her in your prayers.
Friday, November 14, 2008
Reagan slept well last night...waking up at her usual 6am. But being the sweet husband he is (and my birthday today), Mike got up with her and let me sleep in. She's really been quite good all day. She did well with her vision therapy this morning and then we even took her out to lunch with us and she was perfect. Then we pushed our luck. We attempted to take her to a very nice restaurant that has live jazz music for my birthday dinner. It should have been perfect...loud enough to drown out any fussing. Unfortunately she wasn't fussing...she was hysterical. Everything that could go wrong went wrong. We ended up skipping desert and heading back home early. And go figure, the second we got home, she was fine. I have no idea what her problem was...maybe she's just a brat, who knows. She did have a wet diaper, but I don't ever remember that making her so upset. Now she's asleep, the little turkey. Her seizures have been up again today. I'm very stressed about it. I just don't know what could be making them worse. Please continue to keep her in your prayers!
Thursday, November 13, 2008
Reagan has started a new little pattern the last couple days. She'll wake up at 6am, I feed her and then she goes back to sleep (in our bed) for a couple more hours. It works out fine as long as she doesn't have any morning doctor or therapy appts. This morning I had to wake her up to take her to the orthopedic to get recasted. She woke up happy but that changed quickly. I don't know what he was thinking, but the doctor just bent her little foot right in half without even stretching it in the slightest...she immediately let out a huge scream and was hysterical the entire time. Needless to say it didn't go quite as smoothly as the first two times. Then we had to go straight over to speech therapy. Reagan was still pretty grouchy at the beginning but she cheered right up towards the end. One thing her speech therapist has done with her that no one else ever has...she blows bubbles for her (poor baby has been so deprived). I guess what her therapist says is true...all kids like bubbles. I would have thought that Reagan would be totally uninterested in bubbles because they would be difficult for her to see. And honestly I'm not sure how well she does see them, but she seems to like the act of popping them (or us putting her hands on them to make them pop). Because even if she can't see them, she can feel them. That being said, we have noticed a new phenomenon related to her vision lately. She's looking up. That wouldn't sound like much, but for a baby with visual impairments that always looks down, it's huge. She's looking up at your face, at the lights on the ceiling, at the mobile over her bed. Things she hasn't done since she was 2 months old (since before the seizures). I'm not sure how well she's seeing these things, but she's definitely seeing them and interested in them more than ever. Tonight I increased her pm dose of Topomax to 45mg. Her seizures have been a little worse the last couple days...which is super frustrating. I'm not sure what's causing this increase. Could be teething? I just pray that with this new increased dose we'll see a big improvement seizurewise. Please keep her in your prayers...she needs this cast to stay put and not cause any irritation and she needs NO seizures!
Wednesday, November 12, 2008
Reagan gave us a great anniversary present...I would have preferred no seizures...but she never listens. She slept through the night last night and then has been in such a great mood all day today (she must be unaware of getting recasted first thing tomorrow morning). She' s been grinning from ear to ear all day...I just love it when she's like this. When she's happy, I'm happy. Since November is Epilepsy Awareness Month, I thought I should do my part. A couple night's ago Mike and I watched an episode of Mystery Diagnosis that was eerily familiar. The baby in the episode began having weird eye movements and then her parents noticed her arms would come up...like a startle. We knew right away it was Infantile Spasms. It's weird because since Reagan's diagnosis I have watched so many videos of other children's spasms, but this one really hit me hard. As I watched I had tears in my eyes, knowing what heartache lay ahead for this family. One thing they didn't explain in this episode is that Infantile Spasms is not the root of the problem...it's only a symptom of something much larger. Meaning, there are an infinite number of reasons a child might have Infantile Spasms (or epilepsy in general), ranging from oxygen deprivation to a genetic defect (and many times the reason is never identified). The little girl in the episode had something called moya moya's disease. It causes constriction of the arteries that supply blood (and oxygen) to the brain. The doctors never saw any indication of this disease and it wasn't until she had a stroke that they finally identified the problem. Mike doesn't understand why I like to watch this show. Part of it is the scientist in me but the other part is the mother in me...that wants so badly to find a reason why her child has to endure such pain and suffering. It gives me hope that if we keep searching, maybe we'll eventually stumble upon a doctor that can put all of the pieces of the puzzle together and help Reagan. Here is a link to a video that I have seen on several other blogs, but I felt was worth posting again. It was put out by the Tuberous Sclerosis Alliance (TS is a common cause of infantile spasms) and it's very moving. Please watch it...I know it's long but it's very informative and gives you a real glimpse into what it's like for your child to get such a devastating diagnosis.
Tuesday, November 11, 2008
Last night was pretty miserable for everyone. Reagan kept waking up and whining and fussing...I would get up and go in her room and she'd go back to sleep. I got up once with her but only for 10min or so before she fell back asleep. She just couldn't sleep soundly (and neither could we). It's amazing how waking up like that can really deprive you of your rest. I've been exhausted all day. Of course it didn't help that she woke up early too. I think it has to be her teeth. She's drooling up a storm and you can tell she has several that are working their way down. But she did take a super long nap this afternoon...4hrs...very out of the ordinary for her. I actually had to wake her up because I was afraid she wouldn't sleep tonight if I let her continue. Her seizures have been increased today as well. Not so much the big ones, but she was having little subtle ones where she'd shrug and then have a dazed look in her eyes, very quick but for a while they were almost nonstop. I'm really hoping it's just teething and that they'll taper back down soon. It's so stressful to see an increase at this point. Please keep her in your prayers. Today Mike and I celebrated our 8th wedding anniversary. My mom watched Reagan and we managed to get away this evening for a relaxing dinner (away from the whining). It's crazy to think only three years ago we spent this day in Hawaii without a care in the world. Oh how things change. I'm just thankful that we're in this together, because I know I couldn't do it without him. Happy anniversary...here's to a good night's sleep!! (I don't ask for much these days.)
Monday, November 10, 2008
Reagan was horrible last night. I don't know what it was but the inconsolable fussing and crying continued. We finally got her to bed...finally...and then she woke up 45min later just as upset. I was at my wits end. I had already dealt with a half a day of this and it was driving me crazy. I know something was hurting her, but nothing would appease her. Finally Mike got up and gave it a try. It didn't happen right away, but eventually she did fall asleep on the magic chest. He laid her down with her weighted blanket over her and she slept the rest of the night. Thank God. Today she has been a complete angel and very mellow (go figure). Just as sweet and smiley as can be. At OT this morning she was very visually attentive and her occupational therapist was impressed that her range of motion seemed better than usual. This afternoon her physical therapist just couldn't keep from laughing because Reagan was grinning nonstop from ear to ear. She did notice the huge improvement in her feet. Obviously casting was the right way to go...and even though I know this I'm still not looking forward to having them put back on. She's still very floppy today. We tried her in the walker at therapy (now that her feet are free), but she didn't do much. Hopefully she'll adjust to this increased dose and get back to herself soon (only with less seizures). Please continue to keep her in your prayers.
Sunday, November 9, 2008
Last night was another great night's sleep. We so do not take those night's for granted. Reagan was in a good mood this morning/early afternoon. So much so we even put her in her stander for a while. She was actually pretty content in it. Notice the completely flat bare feet. Before the casts she would not have been able to maintain that for more than a few seconds and that's with you manually pushing them down. I am amazed at how much progress was made in just one week with the casts. Although, I admit I'm not looking forward to having them put back on this week...they can't possibly be comfortable for her and they make her so much heavier!!! This afternoon she was hit with a horrible bout of tummy pains. It started with a dirty diaper that left her crying but it continued for another 3 hrs. I don't know if she was still in pain or if she just got on a roll and couldn't stop, but I was about ready to pull my hair out! She is still teething...there's a new one coming up in the front on the bottom right...so that's always a possibility too. She was hysterical, non-stop crying for 3+hrs. Insane. Still absolutely no evidence to what is at the root of her abdominal problems. I spoke to her GI doctor on Friday and the allergy tests came back OK. She has a mild allergy to egg (which she never eats anyway) and a low allergy to whole milk protein. We could try switching away from milk-based formulas but we've done that before and never noticed any differences. Plus with her on Topomax (which can have appetite suppressing effects), I'm not willing to switch her formula right now and risk her not eating. Speaking of Topomax...I have noticed that she's been pretty floppy this weekend. I don't know if it has anything to do with the latest increase or what. That would be my guess. Well...the fussing and crying continues...looks like it's going to be another long one (and it's already been a long one). Ugh.
Saturday, November 8, 2008
Reagan finally had a good night's sleep last night...without casts. She's been in a pretty great mood all day today. We finally got out of the house for once; we went over to a friend's house to eat lunch and watch football. It was actually Reagan's little friend Jackson's house...the one that had brain surgery a month or so ago. He has been seizure free for 35 days now. Such a miracle. We had a really great time, just hanging out and talking. It's nice to have friends nearby that really know where you've been and are super supportive and encouraging about the future. There is no doubt in my mind that God placed them in our lives so that we could offer mutual support during the best and worst of times. He knows what He's doing. I just wish He would do it a little quicker. Reagan's seizures have been improved on the Topomax...but they're still here and still more than we'd like to see. I can't wait for the day when she doesn't have any. Please continue to keep her in your prayers.
Friday, November 7, 2008
Last night was a miserable one. Reagan was up nearly every 15min moaning and groaning...needless to say none of us got any sleep. We thought maybe her new casts were hurting her. Then we took her in first thing this morning and found out why...they cut the casts off and her right foot already had a nasty pressure sore on it. That's apparently what happens when you slip out of proper alignment in a cast. They couldn't recast with the sore because it would only irritate her further so we're having to wait a week, let it heal, and then try again. Next time they want to put on a full leg cast (up her thigh) to prevent it from slipping again. I don't know, that sounds horrible to me. I just hate it that they couldn't recast, I'm afraid that all the progress she made last week will be lost. Her left foot is definitely making more progress than her right (of course her right has always been tighter). You should see her, she's happy as can be to have those things off. She better enjoy it while it lasts! I sure hope she's able to sleep better tonight...we're all exhausted. On that note, goodnight!
Thursday, November 6, 2008
Today we made a few changes. First of all, I took Reagan back in to the orthopedic so they could look at her cast to see if they needed to adjust it because of the toe curling. They decided to go ahead and redo it...extending the footplate this time so her toes wouldn't be able to curl over the edge of the cast (and get irritated and scraped up). Sounded like a good idea, but it didn't quite work out that way. This afternoon I noticed that she is now using the extended footplate as leverage to push her feet up into the cast (and out of the proper alignment that is the whole reason for the casting). So the plan is to go back in tomorrow morning to have them redo it yet again. On a good note, she seems to be tolerating it well. She didn't have any tissue breakdown (thank God) and her feet looked flatter to me (in the brief amount of time they were out of the casts). We also upped her am dose of Topomax today...putting her at 30mg 2x/day (which is kind of a median dosage). We also decreased her Clonazepam to 1/4 pill 2x day (down from 1/2). This is a medication that we don't really think is doing anything for her (except possibly drugging her a little), but it's supposed to have some pretty nasty withdrawl symptoms so we're going to wean her slowly. She has only taken a few very short naps today, so I'm hoping for a good night's sleep tonight. Please continue to keep her in your prayers...