Thursday, April 30, 2009

Way too many seizures

So today wasn't the busy day I expected. Thank goodness because Reagan was up a lot last night. It seems every night she's waking up at the same time around 3-4am. She did not want to go back to sleep and it took me until 5:30ish to get her back down. Over and over she would wake up screaming and then settle back down to sleep again. Poor thing. She was able to sleep in a little and we skipped vision. Then the PT from ECI came by at 11 to do her evaluation. What's unfortunate is that with both PT and OT ECI is only available to see her once a week (and we were getting twice a week in private therapy). I had completely forgotten that we didn't have to go to OT today...she went Monday instead. So we had a little extra time before we had to leave to get to feeding therapy. Reagan was a little drowsy. I think it was a combination of her being hit hard all day by nasty seizures and it was also approaching nap time. She slept the whole drive home and then took a good long nap at home. Unfortunately, she's been pretty miserable since waking up. Seizures haven't eased up much at all today and they've been pretty bad. She's doing a lot of screaming and crying before and after them. It's so hard to watch her suffering like this. I do think they've gotten worse since decreasing the Klonopin...but I still think she needs to get off of it. Maybe by adding something new next week, it will provide her some much needed relief (when our doctor finally gets back in town). I tried to give her some tylenol and before it even went down her throat, she was throwing it up. It was about 45min after getting her medicine, but I didn't give her another dose because when I rummaged through it I saw very few Topomax sprinkles (yes, I sifted through her throwup). What I did notice was that it consisted primarily of spit. I think part of it is that she's teething. Those 2nd molars are getting closer to coming out and they must really hurt! I didn't think about it, but her little cheeks have been red hot all day. Poor girl. Why does everything have to be so miserable for her. I just hope she can get some sleep tonight. She needs it and so do we. Please say some prayers for our little one.

Adorable

Just in the nick of time! I finally got a few pics of Reagan in her blue glasses and we got the call today that her pink ones have come in. Now I just have to find some time to go get them changed out again (might not be until next week). Tomorrow is going to be a crazy day of therapy (say a few prayers for her). She's got vision at 8:30am & an ECI PT evaluation at 11am (both of which are at home), then we have a 30min drive for her OT at 1pm and feeding therapy at 2pm. We'll see how well she holds up for all of that. I guarantee there will be a meltdown somewhere in the midst. Hopefully she'll sleep in late and be ready for a full day of therapy. Last night she woke only once, but she woke up in a horrible mood. Just very agitated...nothing was making her happy. Of course, she was having TONS of seizures, so I'm sure that was partially responsible. It took a while and a lot of patience (which was running low that early in the morning) to get her back to sleep. I didn't even bother with taking her back to her crib, she camped out on the sofa til 8am. She woke just in time for vision therapy and she was being fairly cooperative, considering she was being hit super hard with big, jolting seizures. Poor thing. They are really nasty in the mornings, but thankfully they seem to taper off as the day goes on. Tonight during Bible study, I don't think she had a single one. Now, if only we could transfer some of that to the morning! That just has to be a terrible way to start your day! Constantly being knocked for a loop by those nasty seizures. At least we didn't have to go out today. This swine flu thing is getting ridiculous! Here in Houston the coverage is nonstop! Enough already! Below are the pictures I've been promising to post. I was only going to post a couple, but they were so darn cute I posted nearly all of them! She was working it! Her onesie says it all. I included the last pic so you could see what she does now when she's tipping over. Instead of going flat on her head, like she used to, her arm is coming out and helping her to keep from falling all the way over. Baby steps.










Wednesday, April 29, 2009

Sweeter

Sleep last night was actually improved. Reagan woke up once, but went back to sleep fairly quickly with just a little juice and shushing. So with all that sleep she was up and ready to go at 6am! She's been in a great mood all day today...except for the time right before her nap when she got a little fussy. Of course that would be the time someone wanted to come see our house. I had to say no, I just didn't have enough time to get the house ready and Reagan out the door. It's a good thing, because she went down shortly after and took a good long nap. She's been super sweet and cuddly today, a complete 360 from last night. What's funny is that she's had 3 dirty diapers today (quite out of the ordinary for her) and didn't cry even once! I have no idea why at times it's so painful for her and other times it's a piece of cake. It just doesn't make sense. She's got a followup appt with GI in May and we'll probably revisit all of this again. Next week she's got a followup appt with the ophthalmologist to check on the progression of the secondary cataract she saw in Reagan's left eye the last visit. Hopefully it hasn't gotten any bigger. I certainly don't want her to have to undergo another surgery, especially while her cataract surgeon is out on maternity leave. It would be nice if it's gone altogether. Please keep that in your prayers. And continued prayers for less seizures. We're set to further reduce her Klonopin tomorrow. With this wean we're hoping to see her become more alert and less (or at least not increased) seizures.

Tuesday, April 28, 2009

Crazy fussy

Oh this girl! What are we ever going to do with her?!?! Last night I gave Reagan a little extra Klonopin hoping that it might help her sleep (all I did was increase it to her previous dose). About an hour later she started looking really sleepy. When I laid her down at 10:30pm she was out cold! I thought for sure she would be down for hours, maybe the entire night! True to form she proved us wrong by waking up an hour later...not at all sleepy...wide awake! Mike brought her back downstairs and I took over getting her to go back to sleep. I ended up fixing a little "bed" for her on the sofa to save us from having to make any more trips up and down the stairs. She finally went back to sleep but woke again a few hours later at 3am. I gave her some juice (which she gulped down) and she reluctantly went back to sleep. There she slept until 7:45am when she woke for good. And when I say wake up for good, I mean it! Reagan has been up all day long without any real nap! She fell asleep a couple times today, like in my arms or in the car seat, but the second I tried to lay her down that was it, she was awake and screaming! She was pretty good the first half of the day, but the second half has been CRAZY. She's been a handful to say the least. She had PT today and she was a turkey, even for her favorite sweet talking therapist. She performed fairly well considering, but she did have a few meltdowns. She's been super talkative, but super fussy. She's either yelling, smiling, or screaming! I don't what's going on. She's been very, very spitty. It's just pouring out of her mouth. I think she may have one or more molars coming in, but tylenol hasn't seemed to help her with her mood at all. Now I think she's just over tired, but she's certainly letting us know about it. I don't think she's stopped whining/yelling since Mike got home from work. She's got a lot to say and it's not good. Seizures were yuck again this morning. I put a call in to her neurologist today who of course is out of town again for the entire week (no need to leave a message, he's not checking them). I was SO fed up. I had this email that I had drafted many months ago to a certain Infantile Spasms specialist in Detroit and today I finally sent it. He responded to me within the hour...saying that even though Reagan's seizures appear to be generalized, it may be worth doing a PET scan (his specialty) to see if there's a focus hiding behind the hypsarrhythmia. So he said if we're willing to make the trip, he'd like to do a PET scan, 24-hr EEG, possibly MRI, and office visit to give us his opinion on what our next step should be in Reagan's treatment. Interesting. Not exactly what I was expecting to hear. So I think we're going to do it. It will probably be sometime in June, but maybe we'll get a few answers as to what's going on in that little brain of hers. So that's our day in a nutshell. Reagan is still going full force, yelling at Mike right now at the top of her lungs. She's something else alright. Sorry, no pictures. She's been too mean for pictures today. Hopefully tomorrow will be a picture day.

Monday, April 27, 2009

Another rough one

Last night was another rough one. This constant waking and fussing and seizuring all night long is just more than we can take! Something's got to budge. I don't know if it's medication related, maybe the changing of her meds is causing more seizures and less sleep. I don't know. All I know is that we have got to get some sleep! Seriously! I'm changing it up a little tonight and increasing her Klonopin back up to 1/2 pill for her pm dose. If that's what it takes to get her sleeping again, we'll do it. Whatever it takes, we'll do it! We'll see. I'm skeptical but I'll try anything at this point. Please keep this in your prayers. I think it may be time to talk to her neurologist about what our next step might be. We've got to find something to stop this girl's seizures. They've been pretty much nonstop for 19 months now. We all need a break. A permanent break from seizures. Is that too much to ask? I don't think so. Let's say some serious prayers in this area. Reagan can and will be seizure free...God willing. After being up nearly nonstop from 4-6:15am, Reagan did sleep in a little this morning and didn't wake until right after her vision teacher gave up and left (that's why I always tell her therapist to call before coming). Her feeding therapist and OT managed to squeeze us in for an early session today. She did some pretty good work despite being a little tired. She was good all day, but the fussies have kicked in tonight. Hopefully we'll be able to get her to go down without a fight. Please keep us all in your prayers and I promise to post some pics tomorrow!

Sunday, April 26, 2009

Feeling crummy

Last night was similar to the night before sleepwise. I'm beginning to wonder if we're ever going to get a good night's sleep again. Reagan is still waking with a lot of seizures. I know that must make it hard for her to go back to sleep in the middle of the night. She had a lot of intense ones this morning. The kind that make her head butt me right in the mouth. I really hate those. Then this afternoon she became super fussy. Just nonstop whining and fussing, which eventually turned into screaming and crying. We weren't really sure what it was that was bothering her, but she seemed much improved after a dirty diaper so I suspect that was the culprit. Those darn tummy pains strike again. I just wish there was something we could do for her, but is seems as with everything else, we're totally helpless. Days (and nights) like this can really wear you out. Prayers for sleep tonight and a better day tomorrow.

Saturday, April 25, 2009

Need sleep

Last night was a bugger! Reagan woke up 5 times and 4 of those times I ran upstairs to appease her. Needless to say, I've been exhausted today. The lack of sleep didn't seem to bother her much, she's been pretty happy and reluctant to take naps...just a few minutes here and there. She did crash early tonight (I had to give her medicine to her while she was sleeping), so I sure hope she's able to sleep through. I would much rather her go to bed late and sleep late, than to go to bed early and wake up at 2 or 4am in the morning. We went to the Saturday night service at our church and left Reagan in the special needs children's ministry while we went to the service. This was our first time to leave her alone in there so we were a little nervous about it, but the woman that ended up watching her was a friend of a friend so we felt more at ease. She was asleep (taking one of her cat naps) when we went to pick her up. I think it will be nice for Mike and I to attend service without any distractions, although I know it will probably take us a little while before we can relax and enjoy the service (without constantly worrying about how she's doing). Seizures have been slightly better today. She still had quite a few this morning, but she seemed to be having considerably less this afternoon and tonight. Please continue to keep her in your prayers.

Friday, April 24, 2009

Blue glasses

Sleep wasn't great last night. Reagan woke up a few times and I woke up this morning feeling totally worn out. Mike slept straight through it and didn't even realize she woke up. Go figure. Seizures were similar to yesterday, very nasty in the morning. Reagan had a great day at therapy today. She did well in feeding therapy, tasting different things and having her mouth stretched. She's still not crazy about the frozen lemon stuff, but she tolerated it very well. I'm not sure why, but she was so happy and all smiles the whole session. It was too cute! Too bad I didn't get any pictures. It was so funny to see her smiling away with her therapist's hands in her mouth! After feeding therapy she did some really great work with her OT. She was working on rolling and spent a lot of time on her tummy bearing weight on her arms. Her head control was great and she was looking around and shifting her weight back and forth, I think it was some of her best work yet! She did get a little fussy a few times but she recovered well especially considering she was working hard the whole time and beginning to get tired. Afterward she fell asleep in the car and we went to pick up her glasses. Her pink frames are on back order for a few weeks, so they gave us some blue ones for her to wear in the meantime. I'm not crazy about the blue, Reagan is a girly girl and almost always wears pink, but at least they are blue girl's frames (with little purple flowers on the side) and they're only temporary. They appear bigger but they assured me they're the same size, I think the blue just stands out more than the pink did. I'll have to post a picture of her in them tomorrow. Please continue to keep Reagan in your prayers this weekend. Less morning seizures would be a good start!

Thursday, April 23, 2009

Seizure haze

Reagan woke up this morning having tons of seizures. We're talking every second there was something. Although it eventually tapered off a little, it was pretty hairy for a while. I have no clue what's going on with her. She slept fairly well, just like the night before, one bad dream and then she went back to sleep. We did reduce the Klonopin today but the increase in seizures started before she even got her morning dose, so I doubt that was the cause. Who knows. I certainly don't. But I do know...I don't like it one bit! She was also very dazed today (that many seizures could certainly do that to you). Just kind of in a haze most of the day, that is until Grandma came over! She always seems to perk up for her. My mom watched Reagan so Mike and I could join the people from our Bible study at Texas Children's where we served dinner to those staying at the Ronald McDonald House. It's 20 rooms inside the hospital dedicated for families of children in the ICU. Obviously not a great situation, but at least we could provide them with some hot food and prayers. I can only imagine what those families are going through. Tough times. I guess we do in a way know what they are going through.







Happy pictures coutesy of Grandma!

Wednesday, April 22, 2009

Not so hot

Today has not been such a great day. Reagan slept well enough, only waking once with nightmares and going back to sleep easily after I snapped her out of it. We didn't have any plans for today, but after getting an email from her PT saying that she had several cancellations today we decided to go in for an early session of PT. That went well enough. Reagan did some standing, not much walking. You could tell she was getting tired and I really expected her to go to sleep as soon as we got home. She started dozing off so I laid her in bed and no sooner did I walk out of the room and she was screaming at the top of her lungs. She did this 3 more times before finally going down for an hour or so at 4:30pm. Let me just tell you when she is good, she's a little angel...but when she's bad, she's a holy terror! She was just so very fussy this afternoon! Seizures have been horrible today. Horrible. Not sure what's different. We certainly haven't made any changes to anything in a while. Maybe it's the teething...who knows? It's frustrating. Maybe that's partially to blame for her bad attitude. It certainly gives me a bad attitude! I finally heard back from our neurologist's nurse today (why on earth he can't take a second to call me directly I don't know). She said that he said we can begin to wean her off of the Klonopin. Right now she's on one pill a day, so we'll lower it to 1/2 pill a day for a week, and then 1/2 pill every other day for a week, then stop. Klonopin (and other drugs in this same category) are supposed to be a very difficult to get off of and many people experience severe withdrawal symptoms. Hopefully we won't have any of that with Reagan because she's moody enough as it is. Please keep her in your prayers during this wean. I just want her to come off this medication without any problems (and hopefully with some benefit) so that we can finally begin the process of starting yet another new medication. Lots of prayers needed in this area. Then to top off our already rocky day...I broke Reagan's glasses. Her brand new $260 glasses. I was just wiping some of the junk off of them and the temple piece just broke right off. I've heard the place we got them from has wonderful service and warranties (maybe that's why they charge so much), so I called them and they are ordering a new set of frames which hopefully will be in by this weekend. I guess it's just typical of this all around not so hot day.

Tuesday, April 21, 2009

Sleep at last

Oh sweet glorious sleep! Reagan finally slept through the night last night! She didn't go to bed until almost midnight but she slept straight through til 8am! It was awesome! I was so surprised considering that she is teething right now. Definitely a pleasant surprise. Then today was the first day our helper came (respite courtesy of MDCP). She's starting part-time to get into the swing of things...to make sure she likes it and to make sure we like it. So far so good. I know she was probably bored to tears most of the time, but just having her around enabled us to take a much needed, stress-free trip to the grocery store. I'm hoping that eventually we can have her working on Reagan's therapies at home with her. Reagan was in a pretty great mood all day today...although she did have several choking episodes due to the excess spit from teething. Somehow she managed to stay up all day long without a nap. She didn't take her first nap of the day until sometime after 5pm. That's 9 hrs straight without any hint of a nap...not even a 5-10min catnap...nothing. That's definitely out of the norm for her. She did try to doze off during vision therapy at 3:30pm, but her therapist managed to keep her attention and she stayed awake. Hopefully she'll have another good night's rest tonight, since she's had a similar sleep pattern today. We'll see. I put in a call today to talk to Reagan's neurologist about "what next"...still haven't heard back from him. Reagan's seizures (and twitches) have definitely decreased since taking her off the Lamictal. Unfortunately, she never got back down to the same lower baseline she was at before adding the Lamictal. Mike and I would like to get her off the Klonopin before adding a new medication to the mix. We personally don't think it's doing anything to help her, but if we wean her off and find otherwise then we would probably just add it back. The thing is, we just don't want her on any more medications than she needs to be on, and if it's not doing anything she needs to get off. We've been wanting to wean her off the Klonopin for quite sometime now but we haven't been able to do it because we're always adding something else. Then we need to discuss which medication to try next. Frankly, we are running out of options. I think the next best option would be the newly approved drug Rufinamide (Banzel)...but I'm curious to see what he thinks at this point. We also need to find out about getting another MRI, because now that she's over 2 they should be able to tell a lot more about her brain and we're curious about the possibility of them finding something that might give us a clue as to what is causing all of her issues. We know there is a possibility that we'll never find out, but we can't help but think about it and wonder if maybe we could do a little more for her if only we had a diagnosis.

Monday, April 20, 2009

Add Cerebral Palsy to the list

Reagan's sleeping is still about the same. She's waking up fussing a couple times a night, but usually she'll settle down with her juice bottle without us having to pick her up. I still think it's teething...her upper left incisor (tooth #16) just finally broke through. Last night she must have been having a bad dream or something because she was really crying and the juice was not doing the trick. I had to pick her up to snap her out of it and by the time I got her downstairs and gave her some milk, she was out like a light. We had an early appt with the Physical Medicine & Rehabilitation doctor today...she helps manage Reagan's spasticity by prescribing AFOs and giving her botox. I really like this doctor, she's one of the few that really takes her time and talks in depth with you about everything. She went on and on today about how great Reagan looks. She thinks Reagan could still probably benefit from another round of botox but the insurance denied it the last time we tried. She thinks that we should probably add Cerebral Palsy to Reagan's long list of diagnoses. Right now she has her listed as spastic quadraplegic (which is technically a type of CP), but by adding the specific coding for CP, it will make many things much easier to get approved. CP is a very broad term that refers to any type of movement disorder resulting from damage to the brain. So although this sounds like a step backwards, it's not really any step at all, nothing has changed except for the coding (and it was always pretty evident to us that she fit under the CP umbrella). From the doctors office we went straight over to therapy. Reagan's feeding therapist set up an appt for co-treatment with her OT...that way she was able to watch the OT work with Reagan (which is very helpful to her) and Reagan was able to get an OT session that our insurance would otherwise not have paid for. She also videotaped the entire session, which is going to be very helpful to me when I'm at home trying to do some of this stuff myself. Reagan was great all morning. She was happy for the doctors appt and super talkative and animated for therapy, but when we got home she was spent. She was super tired but could not fall asleep. So then the fussing started up big time. She took a very short nap but it wasn't nearly enough. She ended up taking an early night nap, and was impossible to wake up, so who knows how that's going to affect her sleeping tonight. She'll probably wake up for the day at 2am! Let's hope not!

Sunday, April 19, 2009

Brand new baby

Reagan woke up twice last night, but it wasn't too bad because we took turns with it. Mike ran up and soothed her the first time when she woke up having a few seizures and then I soothed her the second time she woke up fussing. Thankfully when she got up this morning you could tell we were dealing with a brand new baby. The tummy pains of last night were long gone and she seemed to be feeling much better. We went to church today and for the first time we put Reagan in the special needs children's ministry. Well, we didn't actually leave her there, we spent the whole service with her, letting them know all of her issues. We're actually going to try the Saturday night service next week because one of the therapists from Reagan's therapy center is in charge of the special needs ministry during that service and she wants to personally work with Reagan. Looks like we might actually get some OT after all! We've got a busy day tomorrow, a doctors appt and therapy session all before noon. Should be fun. Please continue to keep her in your prayers. Less seizures please.

Saturday, April 18, 2009

Serious tummy pains

Last night was a long night. Mike didn't get in until after 12:30am, at which point Reagan had already woken up multiple times crying. He caved and brought her downstairs with us but she still was not going back to sleep. I have no clue what's keeping her from sleeping and it's beginning to feel like we may never have a good night's sleep again! Once we all finally got up for the day, Reagan seemed to be feeling alright. We went to Jackson's Birthday party and Reagan was a little crazy (although cute in her yellow dress). She was very vocal, so much so we were having a hard time keeping her quiet. Jackson is the little boy that lives in Houston and had the brain surgery to stop his seizures. Many of you prayed for him and he's doing wonderfully. He's been seizure free for 6 months now and is making all kinds of progress. He now sits independently, pulls to stand, crawls, and walks in a walker. It's amazing what these kiddos can do once the seizures stop. The weather was horrendous, it was raining cats and dogs, so we left the party a little early (we needed a boat). Thank goodness we left when we did because Reagan really kicked it up a notch. She cried half the way home and it feels like she's been crying ever since. She's having MAJOR stomach pains. I don't know if she's just more sensitive to the pain or if it's really that much more intense. Poor thing she is just miserable. She's had 3 dirty diapers in half a day...she just can't seem to catch a break. It's also making her more sensitive to her seizures. She'll cry and cry before and after them. I wish there was something we could do, something to give her, to help with the pain. Something to help her sleep it off. It's very frustrating for us all. Unfortunately, I don't know how much sleep any of us are going to be getting tonight. She needs lots of prayers. Prayers to stop these tummy pains, prayers for less seizures, and prayers for sleep.







Friday, April 17, 2009

Early start

Last night was a stinker. Reagan woke up at 4am and was up up. No going back to sleep. I gave her a bottle and there was no hint of sleepiness. Finally around 6:30am I laid her in my bed hoping that she might doze back off. No luck. She was content for about 30min or so and then she got angry. So that was it. I only got about 4 hrs sleep and she got about 6. At least she was up and awake for her vision therapy at 8:30am. Reagan's vision teacher brought this little ladybug toy this morning that's switch activated. Reagan LOVED it! It makes this weird little noise and walks along opening up its wings. It's really cute. She was tracking it with her eyes and then reaching out and touching it. Sounds like something I'm going to have to order for her. Finally at 10am she started getting a little grumpy so I laid her in my bed and she took a nap. She only slept for one hour, little turkey. Then we headed off to Feeding therapy. We've been so blessed to find such wonderful and kind-hearted therapists to work with Reagan. She's doing her best to get Reagan's sessions covered while keeping us at the same therapy center (because the other one she works at is clear across town...46 miles from our house one way). On a good note, once we switch to Medicaid we should be able to increase her feeding therapy to 2x a week...assuming that works with her schedule. Reagan could sure use some extra help in that department. Still need lots of prayers for seizures (not for seizures...for no seizures). After stopping the Lamictal, I saw some immediate improvements (much less twitching and less seizures overall). But it seems like the last couple days they've gotten worse again. They seem to be much worse after waking (which is typical) but some are pretty violent. It's just frustrating. I guess next week we'll be putting a call in to her neurologist to ask him "what next"? I'm guessing it will be Rufinamide (Banzel) but who knows. I would just like to see her get back to a lower baseline. Please keep her in your prayers. As of this moment, Mike is still not back from Canada. His flight was delayed in Seattle due to the bad weather here. I'm afraid he won't be getting here until sometime around midnight...and we have a busy day tomorrow. We have a showing for our house, so I have to get cleaning and we've got a birthday party for Jackson. Should be fun but we're all going to be a little exhausted!

Thursday, April 16, 2009

Feeling strange

Last night Reagan only woke up crying once, so that was an improvement. I can hardly wait til she gets over whatever it is that's been bothering her. I just want a good night's sleep again! Unfortunately, I don't know when that's going to happen. Reagan is still not feeling quite right. She'll be fine one second, screaming the next. She was doing that today during her one PT session for the week. GREAT. I don't know what's going on with her. Maybe she's got some sort of tummy virus brewing. Tonight we had a set back of sorts. I was at Bible study and my mom had to give Reagan her medicine (which went OK) but then she tried to wash it down with some milk and she threw it all up! She hadn't thrown up since starting the Nexium 3 weeks ago! Ugh. I feel like we took two steps back. I hope it was just an isolated incidence. I had to give her another dose of her medicine when I got home. It's so hard to judge what she did or didn't digest. I think most of it came up since she threw up only 15min or so after taking it. I gave her 4 topomax pills instead of 6.5 and another dose of Nexium (can't hurt)...I just skipped the Klonopin and I didn't even attempt to give her the pm dose of Cytra. Hopefully that will hold her over until the morning. Seizures have been a little weird too. They seem much improved and then she wakes from a nap and has a ton! I just don't know with this girl. Please say some prayers for her! She's having a tough time of it lately. And pray for safe travels for Mike...he leaves first thing in the morning and doesn't get back til late afternoon.

Wednesday, April 15, 2009

First Dentist Appt

Reagan's still not sleeping well. Could be the teething, could be her tummy. She had two liquid diapers today...so hopefully she's got it all out of her system now (literally). Despite all that, she's been so good today. She had a dentist appt at TX Children's (scheduled 2 months ago), so we met a friend of mine from grad school for lunch beforehand. Reagan was sooooo good, she just smiled away the whole time! I was very impressed...we were able to have a nice relaxing lunch with no problems whatsoever. Poor Reagan, she was probably just happy to get out of the house. I do have the tendency to barricade us up in the house, only leaving when we have to go to therapy or doctors appts. The dental appt went surprisingly well (and quick). We were in and out of there just like that. They made me lay her down on the chair, the dentist and his assistant pried her mouth open and poked at her teeth and she didn't fuss even once! It was the quickest exam I've ever seen. There was no cleaning or x-rays but that probably would have taken sedation so that's good. He said she has delayed dental development (no surprise...she didn't start teething until 14mo), but her gums look good and she's cavity free so I was happy with that! He just said to brush them...which is easier said than done...but I'm going to have to get better about it. Of course, I completely forgot to ask him what I wanted to ask him...about her grinding her teeth more and more each day. It's driving me crazy! We're supposed to come back in 6months, but I don't know if it should wait that long (although I doubt there's anything they can do).


Tuesday, April 14, 2009

In need of a nap

Last night didn't go so well. Reagan woke up fussing a few times and although she went back to sleep fairly easily, that getting up and running up the stairs to console her takes a lot out of me. I just never get to that good deep sleep that everyone needs to feel rested. Today was a fairly busy day. Our ECI coordinator came by this morning and we spoke about our therapy options. She suggested a company that sends therapists out to your home (which sounds ideal), but when I called them they said they were completely booked. So for now we may have to settle for ECI. The problem is that we are in a huge county and our ECI is hugely understaffed and overworked. They can't even do a PT evaluation until May and although they will probably start OT next week, it's only going to be once a week...that's the best they can do. I don't know. There's got to be a better solution. She had vision therapy this afternoon, which went really well. She seems (at least today anyway) to really be looking through her glasses, instead of under them. Her vision therapist said that she was tracking and doing really well (although she did pull her glasses off a few times today). Her therapist also commented that she seemed to be having less seizures, which is something we've noticed as well since lowering the dose of the Lamictal. Last night was actually her last dose, so I'm hoping that it will get even better once it's completely out of her system. Lots of prayers for that! Reagan only took one 30 minute nap today (in my lap) and that was recipe for disaster. She had a complete and total meltdown tonight. I think it was a combination of extreme exhaustion combined with some gum and tummy. She was miserable! Below is a picture of her in the throws of misery. I know it seems cruel, but I couldn't help but laugh because she was so very, very pathetic. I just hope she gets some sleep and wakes feeling much better (in the morning, not tonight).


Monday, April 13, 2009

Come on tooth!

Reagan still has that one tooth fighting to come through and it's really bugging her. She's been a little on edge all day. She just can't seem to get comfortable, her little lips even look swollen. She's just gushing spit, which she forgets to swallow at times and then chokes. I wish that tooth would just break through already. I still can't believe that she's got a mouth full of teeth now, when only 10 months ago she didn't have a single one! We didn't have any therapies today...no insurance coverage=no therapy. I'm still hoping they'll cave if we just keep appealing it, but that may just be wishful thinking. Meanwhile, I'm going to talk to ECI tomorrow about getting some OT through them. Reagan's PT is going to continue seeing her once a week out of the kindness of her heart. And we still have a few Feeding therapies left before we hit the 20 session limit but we'll eventually have to see our same therapist at a different clinic, one that accepts Medicaid. It's ridiculous that we're having to fight our insurance company for therapies that Reagan obviously needs. At the suggestion of several blog readers, I did finally add a Donate button to Reagan's blog. It's on the bottom left side of the blog. All donations will be used toward the purchase of specialized equipment or to help in getting additional therapies for Reagan.
Below are a few jammie pics Grandma took last night and tonight. Enjoy.





Reagan LOVES to have her hair blown out! Such a girly girl!



Sunday, April 12, 2009

Easter Sunday

Happy Easter! Not much going on here today in way of festivities. Reagan and I watched church live via webcam this morning...and it's a good thing because she's been pretty feisty today. Mike arrived safely in Canada this afternoon. He's staying in Vancouver Island...it's supposedly very beautiful, a honeymoon destination, but it was raining when he arrived (so close to Seattle, I guess that's to be expected). I wish I could have gone. Maybe next time? Reagan is already taking advantage of Grandma being here. She pitched a huge fit today and got her AFOs taken off after less than an hour of wearing them. She was just tired and desperately in need of a nap but she was really taking it out on us. She stiffened up like a board and was crying and holding her breath...she is certainly a handful at times. I think her tooth is bothering her, it's about ready to come through and she's been super foamy/spitty all day. Hopefully she'll be a little happier tomorrow. Please send continued prayers for less seizures as we wean Reagan off Lamictal this week.

Saturday, April 11, 2009

Leaving lamictal

Reagan slept well last night and woke up in a great mood this morning. I gave her some of the benecalorie with her morning yogurt/medicine and she ate it just fine. I only used about 1/3 of it and mixed it in with the yogurt...I never would have guessed it would be so easy to get an extra 100 calories in her. It's an oily, milky consistency but it doesn't really seem to change the taste at all (although it may slightly change the texture). I think I'm going to see about getting her in to a dietitian...just so we have an idea of how many calories she needs to be taking in on a daily basis. Although Reagan's at a healthy weight right now (27.5lbs), she hasn't gained an ounce in 3 months now. As with anything at Texas Children's, it may take a while to get an appt, so I should probably get on top of it now. Her neurologist finally called today. Since we haven't seen any improvement in seizures from the slight increase in Topomax the last couple days, he agrees that it's probably best to get her off the Lamictal. Sometimes medications make things worse instead of better and this sure seems to be one of those instances. We're going to lower it to 1mg/day for 3 days and then stop it altogether. Please pray that we see improvement. Less seizures and NO twitches. Mike leaves first thing tomorrow morning for a week long business trip to Canada (I know, not much of an Easter Sunday). Please pray for safe travels for him (and sanity for me). My mom is going to stay the night with us to help me out while he's gone...which is always a huge help. At least he's still alive and well after replacing our foyer light today. I seriously thought I might be a widow after this crazy attempt. Using an extension ladder, he leaned over (somehow without falling) and replaced the pendant light that hung 20ft above our foyer. I was seriously nauseous watching him do this. While I am afraid of heights, anyone would agree that this was a super dangerous thing to try, but he did it and now we have a nice brushed nickel fixture (instead of the old outdated brass one). Good job honey. Now can we finally get someone to buy our house already?

Friday, April 10, 2009

Another win for the insurance

Sleep was much better last night. Reagan went down early last night and woke up around midnight (probably because she was hungry), so I fed her a bottle and she went right back to sleep. She slept straight through til 6am. Not great, but SO much better than the last few days! I'll take it! She woke up happy and she's been pretty sweet and talkative all day. My stepsister stayed through this afternoon so that she could see Reagan in action at therapy. She took a cat nap on the drive there woke up feeling pretty feisty for feeding therapy. She tried some jello, some vanilla pudding, some fruit flavored cottage cheese, and some water. Her therapist also gave us some stuff called Benecalorie that we can add to her food to give her a few extra calories. One tiny little container has 330 calories in it!! Pretty interesting stuff. Then Reagan had OT...she did a lot of stretching (in her upper arm/shoulder and her neck) and worked on rolling. Her OT is very good about showing me exactly how to do these things at home and even makes me practice while we're there so that I feel comfortable with what I'm supposed to be doing. Unfortunately, I'm not sure how much more OT and PT we're going to be getting. When we got home today I picked up the mail (always bad news) and saw a rejection letter from our insurance denying our appeal for more PT. I'm just sick about this. SICK. They claim that our policy says she can only have 20 sessions per year, NO exceptions. I don't know if they are crazy or what...but there's no way 20 sessions of therapy/yr are enough, for anyone really! The worst of it is that neither of the therapy centers we currently go to accept Medicaid. So we can't even use our backup plan. There's nothing we can do. We have therapists that we adore but there's no way we can continue to go to them. I'm just sick about it. I was in tears all afternoon. I know we'll eventually figure it all out, but sometimes it's just too much. Please keep this in your prayers.

Thursday, April 9, 2009

No sleep, new glasses

Last night was Reagan's worst night yet. She seriously woke up every single hour! She'd wake up fussing, I'd run up the stairs give her some juice to pacify her and then by the time I'd get back to my bed she'd start fussing again. Ugh, it was miserable...and she was miserable. Finally around 5am I gave up on getting her back to sleep and I forced her to wake up and open her eyes and she mellowed out a little. I laid her in bed with Mike for a second and when I came back she was asleep on my pillow. Little turkey. Unfortunately she woke up about hour later when Mike's alarm clock went off. She's been up ever since. We had an early morning showing for our house at 9:30am (not at all inconvenient or a waste of time) and then we were off to Texas Children's to get her blood levels checked. Thankfully we found our favorite phlebotomist to draw her three tubes of blood (not a tear shed)...and we found out this afternoon supposedly all levels are OK. They want us to try increasing her pm dose of Topomax a little to see if it helps with the seizures/twitches. I told them I'm not happy with that (and I think we need to take her off Lamictal) but I'll give it til Monday. It works by then or I'm taking her off! Please say some prayers for all of this. Then we went and picked up Reagan's new glasses. I'm still not in love with them (and neither is Mike) but I'm hoping they'll work out for her. When they first put them on her she seemed to really be looking through them, but now she's back to trying to look under them (although it's hard to tell if she's looking under them or just looking down like she normally does). Maybe she just needs some time to get used to them. They're still making a little crease on the side of her nose, but probably not the mark that would have been made with the silicone nose pieces. When we came home my stepsister, Jennifer, was waiting for us. She drove in from Austin just to see Reagan and visit with us...so sweet. Below are a couple cute pics of Reagan in her new glasses.



Wednesday, April 8, 2009

Toothy smile

We had more of the same last night. Reagan is just not feeling quite right. She wakes up crying after only 1.5-2hrs of sleep and then it's very difficult to get her back to sleep. I definitely think it's teething. Her cheeks are rosy, she's super spitty, and she even had a low grade temp tonight. That upper left incisor is right there ready to come out. Reagan has been so talkative today, but always right on the edge of fussing. She only took one short nap today and then now as I type she's trying to take another...save it for bedtime please!! She was really great for vision therapy this morning...so bright eyed and alert. She had a great session. Then she had physical therapy and she did pretty well with that too. She did some good sitting, but it wasn't her best work in the walker. I spoke with the neurology nurse today (I know...where's our doctor) and we're going to take her in tomorrow to have her levels checked again. Hopefully I'll hear from the doctor tomorrow with the results and then we can discuss my concerns on Lamictal. Keep that in your prayers. He needs some divine guidance as to what steps to take next. We just want the best for her...and that includes less...or even better NO seizures.



Tuesday, April 7, 2009

Teething, tummy, and seizures oh my!

Last night was a nasty one. For starters, Reagan did NOT want to go to sleep. I struggled with her fussing til 12:30am and then finally she went down. She woke back up at 2am crying. I went upstairs and consoled her with some juice. Then at 6am, she woke crying again. This time there was no consoling her, so I brought her downstairs and put her in our bed. I think it was a combination of teething/tummy pains keeping her up. She was still really irritable and then the reason became clear...a very stinky diaper. After I changed her she laid in bed with me kind of in and out of sleep til 8am. I don't think she could fully fall asleep because of all of the twitching/seizures. Poor thing. They've really been hitting her hard lately. She's been in a kind of seizure induced fog all day today. I'm getting pretty sick of this. I'm trying to be patient and wait another week, but I'm about to just pull her off the Lamictal myself. I don't need a doctor to tell me what to do, in this case I guarantee you I know more than he does about what's going on. I think I'm going to put in a call to her doctor (not his nurse) tomorrow. She seemed to be doing a little better tonight thanks to a visit from Grandma and the return of Daddy. I think she gets sick of just me all day. The picture below is what I found waiting for me after I took a late shower tonight...how sweet is that?


Monday, April 6, 2009

A waste of therapy

Reagan was up by 6:15am, which completely spoiled her occupational therapy session today. It was originally scheduled for 9am (which would have been fine) but we had a showing for our house from 11:30-12:30, so I really needed that time to clean up the house. I rescheduled her OT for the time of the showing but it was too late, she was already tired. It was a wasted therapy day really. She was droopy for the first 30min and she was asleep for the last 30min! Of course she woke up screaming the second I put her in the car seat! For the next several hours she was extremely irritable and cranky, I just assumed it was because she was still tired but apparently she was having some tummy issues too. Once she took care of some business, she was finally able to take a nap. Thank goodness because she was seriously driving me crazy. She'd be OK , then the next minute she'd start this super loud whining and fussing, and then the next minute she'd be hysterical. She took a good long nap and woke up in a much better mood. I didn't get her AFOs on her at all today (and she only wore them for ~2.5hrs yesterday) and she only got 2 doses of the Cytra today (that mid-day dose is getting skipped every day because it's falling right in the middle of her nap time). It just seems that there's not enough time in the day to get everything done (and even more so on days when she's fussy). I'm hoping that once we find an attendant to help with Reagan, we'll be able to get things more structured and pack more into a day. That's the plan anyway. Please keep it in your prayers that we find the right person for the job. Also please keep it in your prayers for less seizures for our little princess. They've really been hitting her hard lately.

Sunday, April 5, 2009

Sunday update

So although Reagan was tucked away when we got home last night, she slept straight through til the morning. She actually slept later than usual, waking us up around 8:15am. I know we say Reagan is sleeping through the night now, but what we actually mean is that WE are sleeping through the night. She may very well be waking up in the middle of the night and then going back to sleep on her own...we don't know because she's not making enough noise to wake us up. And that is a good thing since she used to wake up every hour or so crying hysterically every single night! Now most mornings we find her in bed already awake when we hear her making noises...thankfully she's usually content, a far cry from the baby we used to know. Yes, you never realize how much you need sleep until your not getting it. Of course, as I type this it's 11:30pm and she's still wide awake! She's been in a good mood today, which is surprising considering she hasn't had a movement going on 5 days now...boy when she does we're going to be in trouble. Seizures have been rough...especially tonight, which is strange because they usually ease up a night. Not tonight. I'll give it another week tops and if we don't start to see some improvement we're kissing Lamictal goodbye. Please keep all of this in your prayers. It's so tough watching her have so many seizures. I was telling Mike the other day that it's probably a blessing in disguise that she's not sitting, walking, and crawling...she would seriously injure herself with the intensity and amount of seizures she's having right now. All that said, I sure would like to see less seizures more mobility. It's so tough carrying her around all the time. We went to the store today and it was brutal trying to carry her...it's not like carrying a typical 2 yr old. She doesn't participate at all, she doesn't use her legs or arms to hold onto you...it's like carrying a 27lb bag of concrete through the store...with it constantly slipping through your hands. No fun. And it makes it extremely difficult for me to take her anywhere on my own. Here are a few pics we took yesterday. Grandma brought Reagan a new toy, which she seemed to enjoy.











Saturday, April 4, 2009

Dinner for two

Reagan woke up super sweet and talking away at 6:30am this morning...apparently no one told her it was Saturday. I brought her downstairs and put her in bed with us but when she's awake, she's awake, so I reluctantly got up with her. My mom brought over some bedding plants today so that we could replenish our dying flowers (and hopefully sell our house). Thankfully she stayed and helped me put them in...although she raised me with an appreciation for plants and flowers...I certainly did not inherit her green thumb. Reagan was quite pleased to see Grandma and she got to spend some one on one time with her tonight while Mike and I went to dinner. We rarely get away so it was a nice little break. I'm sure Reagan didn't miss us in the least. We weren't gone for long, but by the time we got home she was fast asleep in bed. Hopefully she's out for the night. Unfortunately, things were a little off today and she missed wearing her AFOs altogether (although yesterday and the day before she wore them for 3hrs) and then she also missed her second and third dose of Cytra today. She took a nap and missed her mid-day dose and then was asleep by the time we got home to give her the pm dose. Oh well, there's not much I can do with her sleeping. I just need to make sure I get everything in tomorrow. And as always, please continue to keep her in your prayers for less seizures.

Friday, April 3, 2009

No therapy for you

I know I've said it before but I'll say it again...I'm really getting fed up with our insurance!!! I just found out today that they have not paid a single claim sent in by our other therapy center (where Reagan gets her feeding therapy and OT once a week). I'm not sure why the center never bothered mentioning it to me (you would think they might be a little concerned about that), but I didn't find out until today when I got an EOB (explanation of benefits) from our insurance in the mail. I immediately called up the therapy center and spoke with them and supposedly the insurance wanted all kinds of extra documentation about her diagnosis etc and they had to send it in to them...which is ridiculous because they already know what her medical issues are! The thing is, before we ever started therapy they got approval from the insurance and now in true fashion the insurance is denying payment. I'm just so sick of this constant struggle with them. I feel like my head is going to explode! And the thing is, we cannot even use our recently approved medicaid at either of Reagan's therapy centers because neither of them accept medicaid!!! Ugh. Reagan did have feeding therapy this afternoon and it actually went pretty well. She took a nap right before so she was very alert and talkative during therapy. She hadn't eaten yet so her therapist gave her some chocolate pudding. She seemed to like it. She's been very spitty today, I'm sure it's due to her new tooth, but at times she forgets to spit or swallow it and then she chokes on it. Please keep her in your prayers this weekend that we might finally see some improvement seizurewise and a few prayers that maybe, just maybe, we'll catch a break from our insurance.

Thursday, April 2, 2009

The seizure rollercoaster

Not a lot going on today. Reagan had PT this afternoon and she was a little grumpy because she hadn't taken a nap so it wasn't the best session to date. We're still waiting to hear back from insurance as to whether or not they are going to approve more PT for her. It's ridiculous to think they would even consider only allowing her 20 PT sessions a year, but they have been so horrible lately who knows. Her therapist has been so nice about everything and Reagan just loves her...I just hope we can continue to pay her for her services! This afternoon a lady came by from a home healthcare agency to do paperwork in preparation for us to hire an attendant to help with Reagan (through MDCP). We will place adds and interview people ourselves and once we choose someone, they handle all the background checks and human resource stuff. I just hope we can find the right person for her. I have a feeling we're going to be a little picky. Seizures are still rough and the twitching makes me think it's due to the Lamictal. Lamictal (like Vigabatrin) has the potential to increase myoclonic seizures (such a twitches). It wasn't until we took her off the Vigabatrin that we realized it was the definite cause of the twitches and increased seizures. It's frustrating because we were adding another medication in the attempt to get her less (or no) seizures and instead it's had the exact opposite effect. Unfortunately, it's not until you take the medication away that you really know if it's responsible. I spoke with the nurse today about it (and she spoke with the neurologist) and he wants to wait another week or two to see how she does. For now I'll play along, but my gut tells me it's the Lamictal causing all of this. I did notice Reagan's right upper incisor (that's been cutting through for months now) finally broke the skin! That's tooth number 15! The last few days she's been sticking her tongue up toward the front of her mouth (and her cheeks have been really rosy), I knew something was up. I know teething can cause an increase in seizures...but this increase has been going on for weeks now so I don't think it's teething related.

Wednesday, April 1, 2009

New glasses

Reagan slept well last night. Thank God. She's actually been sleeping very well lately, which is such a blessing. It's hard enough trying to deal with everything resulting from the seizures, but when you're going on no sleep...it's nearly impossible to stay sane! So her sleeping though the night has been a huge blessing in our lives. So simple, yet for the first year and a half of her life it seemed completely unattainable! She was awake just making noises in her bed at 6:45am when Mike got up for work. She's been in a much better mood today. It seems whatever was ailing her yesterday may have passed (literally). I spoke to the doctor's office and we're going to hold off a few more days on the blood work (unless the irritability picks up again). We took a trip into town today to get new glasses for Reagan. There is a specific store just outside of the medical center that caters to children and they have a huge selection of tiny glasses. I took my sister with me because I am completely unable to make a decision on my own...and even now I'm regretting my final choice. I went in with the intention on getting the same type of glasses she had before...the wire rimmed glasses with the silicone nose piece and curled plastic around the ear. Just for fun we tried on a few of the plastic ones. The benefit of the plastic glasses is that they don't require a nose piece, they are seamless plastic and seem to be a little less irritating than those with a nose piece. She tried on several pairs, but one in particular stood out, not to me but apparently to everyone else in the store. They were more kid-like and cutesy with pink rims with pink and green flowers on the side. They were made of super flexible plastic...they almost didn't seem like real glasses. The lady that worked there, my sister, and another mother who was there with her little girl absolutely fell in love with this pair of glasses on Reagan. Although I'm still not crazy about them, I decided to go ahead and change it up this time, with the intention that maybe she'll get more use out of this pair because they are more light weight and hopefully more comfortable than her other pair. We'll see. Like I said, I'm not much of a decision maker and I'm still having regrets, but it's done now. I wish I would have taken a picture of them on her while we were there, but I found a picture of them online...what do you think?