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).
Sunday, November 30, 2008
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...
Wednesday, November 5, 2008
Reagan didn't make it three in a row. She was up last night from 3-4:30am (but at least I was able to get her to drink a bottle while she was up). It's a never ending battle trying to get more food in her. This whole virus thing has really thrown her off and now she's back in the habit of eating less...that has got to change. Waking up in the middle of the night threw off her whole day today. She woke up late and ended up not taking a nap until after noon and then slept through occupational therapy...I didn't even bother taking her, I just let her sleep. She was actually still asleep when her vision therapist showed up at the house at 3:15...that's when I finally woke her up. She didn't seem to mind too much although she was still a little groggy. And that was it for naps. One nap is NOT enough for her. Around 8pm she got over tired and super fussy then she started having tummy pains...let me tell you that is not a good combination! She cried and cried for the next hour and a half...then three diaper changes later she finally fell asleep. What a night. Please God let her sleep through the night tonight.
Tuesday, November 4, 2008
Last night was another awesome night for Reagan! She slept (in her crib) all night without so much as a peep! This is definitely an answer to prayers!! We are just so thankful that it has been such a smooth transition...I mean we are talking 19months of sleeping in a swing! This is pretty amazing. She has been in a great mood today as well. She had PT and was doing really well with her head and trunk control. Her therapist was just giving her a little support and she was sitting up big and tall! Very impressive. She has been pretty sleepy today. She took a 2 hr nap before therapy and then took another 3hr nap afterwards...although she did work pretty hard so I don't blame her for being tired. I've been noticing lately (and especially today) when she takes a nap her little cheeks become very flushed. I think it may be a side effect of the topomax. It can inhibit their ability to sweat (so you really have to keep an eye on them in the hot summer months). It's weird because it's not like rest of her body is hot...but her little cheeks turn bright red and are very warm to the touch! It does make a pretty picture though...pink rosy cheeks...so sweet! Seizures have been less lately (since starting the topomax) but today for some reason they seem to have increased. We don't want to see any increases...just a steady decrease until they are gone for good!!! Please keep this in your prayers!
Monday, November 3, 2008
Well, she did it!! Reagan slept through the night in her crib!!! I thought this day would never come. She woke up a few times and fussed for a few seconds, but then went back to sleep on her own. She must be starting to feel better because she woke up this morning as smiley and happy as can be. We finally made it to her ENT appt today. The doctor cleaned some of the wax out of her ears (oh she loved that) and said that he could see some clear fluid in her right ear but it's not infected and it should resolve on its own. So we're supposed to just take her back in 3 months to follow up and that's it. We went to occupational therapy today and Reagan got all taped up again. Her OT tried something new where she wraps the tape all the way up her arm...but I don't think it's doing what she wanted. After missing an entire week of therapy while she was sick, Reagan is probably going to go into therapy overload this week with 2-3 therapies a day Tues-Thurs. I know I'm not looking forward to them all. Please keep her in your prayers so that she makes a full recovery! (Below is another pic from her photo shoot...I think the pig tails are cute!)
Sunday, November 2, 2008
Last night was better than the night before, but still exhausting. Reagan woke up and then wouldn't go back to sleep. I hate that we're back to talking about sleepless nights again. I'm hoping it's only for the time being and that this too shall pass. Reagan does have a lot on her plate right now, hopefully she'll get the hang of it soon and start sleeping through the night again. Our sanity depends on it. Her physical therapist came by our house today to check out her casts...how wonderful is she? Reagan's curling her toes over the edge of the cast and it's causing some irritation. I put some cotton under her toes and that seems to help. Her therapist thinks it's OK, but wants me to check with the orthopedic tomorrow to see what they think about it and make sure they don't need to recast her because of it. She also helped us to adjust Reagan's stander to fit her better. No more excuses...she needs to be in it daily. There's really not enough time in the day for everything we need to do. From medicines to bottles to baby food to doctors appts and therapies at home and away...there's just not enough time for it all. Tomorrow morning we have her ENT appt (the one we had to cancel last week because of our trip to the ER). I'm curious to see what he has to say about the results of her hearing test. She's been super smiley tonight. Wide awake though...not sure when exactly she's going to be ready for bed. It seems she's oblivious to the time change. Below is a picture from her photo shoot a week ago (the one that she was either crying or fussing the entire time). She looks like a little angel...of course she was asleep...but that's when she's her sweetest.
Saturday, November 1, 2008
Last night was absolutely horrendous! Reagan was up and down all night long. She went to bed early at 9pm (but we didn't get to bed til past 11) and then she woke up at 1:45am. It was every hour or so after that (with a big throw up in the middle). It's hard to say what's going on with her...there are just too many variables. She's still getting over this sickness, she's sleeping in her bed for the first time ever, she's got 2 big giant casts on her legs and she's teething (a new big giant molar is coming in right above the other one on the left side...not to mention several other teeth that look like they could break through at any moment). So we've all been a little fussy today. It's actually Mike's birthday today, so hopefully Reagan will give him the gift of sleep tonight. My birthday is coming up as well...can you guess what I want?? No seizures. Please keep her in your prayers!! She actually just fell asleep so I better wrap this up and get to bed!! Good night (hopefully).
One of Reagan's little friends Zoey has just been diagnosed with acute myeloid leukemia (AML). As you can imagine it has been a devastating blow to this family. This little girl has already dealt with so much in her short life...it seems so unfair that she's bombarded with yet another gigantic obstacle. She's actually quite the miracle child...she's already overcome a stroke, a severe heart defect, and infantile spasms...I have no doubt that she's going to beat this as well. I just ask that you would please keep her and her entire family in your prayers as they embark on this new journey. I've added a special picture link to her site at the bottom of our blog...please visit her site and offer her family some prayers and words of encouragement!!