Thursday, March 31, 2011

Good with a hint of fussy

Reagan has had another good day today. Sleep wasn't perfect last night. She fell asleep and then woke literally one minute after I crawled into bed (after midnight). She was really moving around a lot, so I decided to just pick her up and watch some late night tv with her. She was asleep and back in bed by 1:15am. She slept through til 6am and then she was wide awake. Mike put her in bed with us, but she was moving and "talking" the whole time. She's actually been very vocal all day. She had speech, PT, and "school" today and did really well for all of them. She was definitely less sleepy today...she's been full of energy...moving, moving, moving. The good mood lasted all day and then tonight she had a few fussy/crazy episodes but then cheered back up and was precious the most of the night. This is the first sign of fussiness in almost a week (since she was in the hospital)...we've been blessed to have so many good days with our girl (Grandma is hoping she's got a few good days left in her because she flies in tomorrow morning). Thank you for all of your continued prayers!!

Wednesday, March 30, 2011

Still good

Reagan had another good night's sleep last night. She woke up right around 8am. Not so smiley though. She did eventually get her smiles back, but there weren't as easy to come by as previous days. She's also still a bit groggy. She made it through vision therapy today (from 10-11) but fell asleep shorty after and then slept straight though "school" time (we've missed quite a few days with the teacher lately). She woke back up about 30 min before speech therapy. She did great for speech therapy. We found out today that she's a huge fan of sour apple dum dums. She couldn't lick it enough! She's still chewing at her hand. Today she's bitten onto the sock that was covering her hand a few times. I don't like that she's actually biting again. We'll have to be more careful. She's also been a little grunty today (not sure what that's about) and not quite as relaxed as she's been recently. And tonight she's really been kicking around a lot. I'm not sure if that means we're toward the end of the good cycle or what. I guess we'll just have to watch her. This afternoon I had a meeting with Reagan's regular pediatrician (not the one that overdosed her). We just talked about the awkwardness of this whole situation. The fact that this guy is really the only palliative care doctor here in Houston familiar with the treatment of kids with mito. She spoke with him yesterday and relayed our concerns. How do you keep seeing a doctor that almost killed your child?? She's sure he'll be extra careful in the future, but still. I just don't know. She spoke with him about future options on pain medications and our hesitation to ever try another opiate again. The medications they spoke about were Toradol (a medication Reagan successfully used after her g-tube surgery but used longterm can cause GI bleeding and kidney failure) , Thorazine (a decent sedative in the class of psychotrophic meds that comes with an increased seizure risk) , Tromadol (an opiod analgesic...can cause respiratory distress like methadone), & Haldol (an old school antipsychotic/tranquilizer that has an increased seizure risk, can mess with the QT interval in the heart, AND can cause dystonia...we don't need anymore crazy movements). If anyone has any opinions on any of those medications, I'd love to here them! As of right now, we're not trying anything new quite yet. Just thinking...that's all. Now it's time for bed!

Tuesday, March 29, 2011

Still groggy

Reagan had another good night's sleep last night. And woke up smiling once again. She's been such a good girl today. Very sweet and even a little talkative. She's still driving us crazy with that hand though. In her mouth, or her hair, at all times. She's still groggy...she took a couple naps during the day and one tonight as well. She had OT and PT today. She did well for both. She had just woken up when her OT got here and then after PT she stood in her stander for a while and then fell asleep as soon as she got out. Tonight she's been snoozing most of the night (although she's acting like she's thinking of waking up now...at 10:30pm). I guess she's still trying to recover from the crazy week she had last week. Poor girl. She's such a sweetie through it all!


Asleep this afternoon (sorry for the size)...


Asleep and smiling...



Asleep tonight...

Monday, March 28, 2011

Sleepy and sweet

Reagan was wide awake last night so I had to give her clonidine to get her to sleep. It worked well because she slept through the night again. She's been such a darling again today. Very smiley and sweet. Still wanting to chew on her hand a lot (but not biting as of now). I looked at her hand today and the fingernail on her left pointer finger looks like it's going to lose half it's nail. I don't know what we're going to do with this girl! Friday we finally have our appt to talk to the orthotics place about making a custom hand orthotic to keep her from biting herself. Hopefully this will be the solution we've been looking for. We didn't get a passport today. We loaded up into the car, picked up Daddy from work (both parents have to be present), and went to the post office. Mike went in ahead of us to sign in and told us the bad news. It was 10:45am and they weren't going to get to us until at least 1:15!!! It was packed full of people waiting to get passports!!! What the heck?!?! Why are there so many people getting passports on a Monday morning?!?! We ended up blowing it off, Reagan had a 1:30pm appt with Dermatology, so we couldn't wait. I'm not sure when we'll try again. Definitely frustrating! Reagan fell asleep around noon and then slept the rest of the afternoon (maybe a catch-up day). We took her into the dermatologist and she never even opened her eyes! They looked at her head (and saw how great her hair had grown back in), applied some more of that medicine, and then said we didn't need to come back in unless she had some new spots come up. Reagan finally woke up around 7pm. Still smiling and happy...such a good girl! Hopefully she's still able to sleep tonight!


Smiling in her sleep at the doctor's office!

Sunday, March 27, 2011

Just darling

Reagan has been such a doll today. So sweet and so precious. She slept through the night last night. I heard her moving around once around 5:30am, but she fell back to sleep on her own. When I woke at 8:15, I went in her room to check on her. There she was just laying in her bed looking around. She started smiling as soon as she heard my voice. She's been such a darling today. All smiles. Super easy going and laid back. Very cuddly...you just want to squeeze her!!! Boy do I love this girl. She has been really spitty again. She had another big throw up this morning and was a little chokey while laying on her back, but she hasn't really been nauseous overall. Tomorrow we're going to attempt to get her a passport. Mike has a business trip to Canada coming up at the end of April and we're thinking of joining him. It took us a while to get a passport picture of Reagan that we think they will accept (although we're still not sure). We were all ready to go mail off her application when I realized that we only had the short form of her birth certificate (and you have to have the long one for a passport). So I had to order that and have it sent overnight. Now I think we finally have everything we need so tomorrow we're going to give it a try. We'll have to expedite everything since we've put it off so long (costing us nearly double), but we have no choice. This will be the first real trip we've ever taken with Reagan that wasn't for medical purposes! Now we just have to pray that it falls on her "good" days!!

Saturday, March 26, 2011

Sweet and snuggly

Last night was a little rough. While fairly content most of the day yesterday, Reagan was very agitated and fussy all night. She would sleep 30min and then be awake and whining for an hour. She'd sleep for an hour and then be awake and agitated for an hour and a half. Up and down. Up and down...all night long. It was a looooong night. Especially considering I was already severely sleep deprived! On a good note, when she woke this morning she was a different child. Maybe it was the huge horribly stinky diaper she had waiting for us this morning (even now, the smell still lingers in her bedroom). I'm sure that had to cause some sort of discomfort. But ever since then she has been very calm and content. She's been super relaxed...no more chorea and she's not at all tense anymore. We've even gotten quite a few laughs today (which were certainly unexpected). She's still a little clammy and super spitty...dripping like a faucet really (she had another big throw up this morning)...but I think we're almost done with these bad days. Actually, it would be hard to call today a bad day. Even though she's still not 100%, she's been pretty darn good today. Super sweet and snuggly. Those laughs just melt your heart. We even took her for a walk and let her swing on her swing this afternoon. It's so nice to be home. Thank you so much for all of your prayers!! Now, if we could just get some sleep!!!

Friday, March 25, 2011

Aftermath

Last night was a horrible night. Reagan was miserable and it was hard to console her. She wasn't sleeping much at all. She didn't really want to lay down (she preferred to sleep upright on the edge of my lap). She was covered in wires, there was nonstop beeping from the machines, the pulse ox kept coming off her fingers/toes because they were so wet and clammy and the leads on her chest kept falling off because she was so sweaty. We were in one of the smallest rooms of the ICU and apparently our AC wasn't working either because we were all sweating profusely. After complaining all night, finally this morning they came and adjusted it and we had air. But we were done. DONE. There was no longer any reason for us to be in the ICU. They just never got a regular room for us so we were stuck there. So when this morning rolled around, we immediately told them "Let us go home!!!" We don't want to "try" any more medicines, we just want to go back home! So at 10am we were released and we headed home. Reagan has been better since. She does not want to be held, she's still very restless, but she's been fairly content sitting in her brown chair. She's still extremely clammy (her hands and feet are like wet icicles) and she's been very foamy/spitty. She had a big throw up tonight. We're still dealing with bad days, but we're just happy to be home...with our girl. We've been thinking a lot about what happened. The whole thing is so surreal. Mike really thought this was it. That she was gone. I don't think that ever really crossed my mind...until now. And that's how it can happen. Just like that. In the blink of an eye. What if I would not have gone in there to check on her...she would have just stopped making noise and we would have thought she fell asleep! What if we wouldn't have taken CPR classes just two weeks ago? It's just so scary! And what do we do now? This is a doctor that I really liked! I've heard great things about. He has lots of experience with kids with mito (and there's not another pediatrician like that here). He made a mistake, a big mistake, a HUGE mistake...a mistake that could have killed my child. He's not some old senile doctor...he should have known better!!! Shouldn't he have been more careful when prescribing a medication like this?!?! I don't know. I just don't know what to do about this whole situation. If we don't go back to him...who do we go to? Ugh. What a mess. But we do still have our girl...and she seems no worse for wear. Us on the other hand...we are a mess. We're exhausted and emotionally spent. Please keep us all in your prayers!!!


In the ambulance...





In the ER...

Thursday, March 24, 2011

Beyond scary

Last night was the worst night of our lives! Let me elaborate. Reagan woke up at 1 pm and started fussing. I tried to soothe her but it wasn't working. So I decided to give her another dose of the methadone (it was written for every 6 hours and it had already been 7 hours since her first dose). She fell back to sleep only a few minutes later. I laid back down in bed and tried to go to sleep. A few minutes later I heard her making a weird whining sound. I thought she was starting to fuss again and I almost didn't get up, but it was an unusual noise so I thought I'd check it out. I'm glad I did. It wasn't fussing, it was a weird noise she was making while she was breathing. And then the breathing stopped! Mike heard me say she wasn't breathing and he ran in the room and pulled her out of bed and onto the floor. She was totally unresponsive and turning grey. He told me to go call 911. I got the phone and started dialing, I came back into the room and we started CPR. I did chest compressions while Mike did the breaths. It took 3 rounds of 30-2 to get her breathing again (thank God we took that CPR class two weekends ago). Once she was breathing (albeit very shallow breaths), I ran and got the pulse ox and put that on her and then put the nasal cannula on her with some O2. by the time we did all of that (maybe 5 min), the EMTs were knocking at the door. They loaded her up in the ambulance and I rode with her while Mike drove behind us. I made them take us to Memorial Hermann Children's Hospital because that's where the mito kids go. It was our first time to this ER, usually we go to Texas Children's. We spent some time in the ER. Reagan was stable but still not breathing well. They gave her some breathing treatments thinking maybe her airway was constricted. It helped little, if any. She was still really out of it and hadn't really opened her eyes yet. Apparently they were still concerned and they put her on high flow O2 and moved her to the PICU. I heard someone say something about an overdose and immediately I told them that she wasnt overdosed and she had just gotten what she was prescribed. Shortly after getting in there they gave her something called Narcan. Within seconds it reversed the effects of the methodone. Reagan's eyes popped open and she was alert and awake! Of course with awake came unhappy. Very unhappy. She was crying and holding her breath. Definitely stressful. Up until this point no one was really talking to us about why they thought this happened (in retrospect I wonder when they figured it out...obviously right around the time they decided to transfer us to the ICU). Then this afternoon the special needs pediatrician came by. I asked him what he thought happened...whether he thought it was an allergic reaction or an over response to this new medication. He told me he knew exactly what it was. The real reason Reagan had stopped breathing was that he messed up on her dosage! He calculated her dosage using pounds rather than kilograms, meaning he gave her 3x the dosage he meant to give her. He literally almost killed her with that mistake! So scary. It makes you think twice about trusting what is written on your medication bottle. We spoke with him about "maybe" giving the methodone another try at the correct dose tomorrow after all of it clears from her system (and while she's still under observation). Then out of no where they came by and gave her another dose. That's when she really started holding her breath and scaring the you know what out of us. We literally had to blow on her to get her to breath again. I could have killed those people for giving that to her again!! So that's it for methadone. We're done with that one. So here we sit. Still in the PICU because they never got an open bed on a normal floor. They wanted to keep her overnight for observation. Hopefully we'll be headed home tomorrow. No more drama please! I don't think this mommy can take it!! Please keep our little one in your prayers!!

Wednesday, March 23, 2011

Off again

When Reagan woke up this morning you could tell, the tide had changed. There was no smile. Her eyebrows were all squished together and she had a scowl on her face. Something was definitely "off". I was expecting the worst, but overall it really wasn't that bad of a day. She had vision therapy this morning. Her therapist brought the OT from the school with her. I had low expectations of the visit, but Reagan actually did very well. She was picking up and dropping things into a container and she did it several times with both hands. After she finished with that she had speech therapy. It also went surprisingly well. She was turning pages and touching things on command...her therapist was very happy with what she was doing. I was just happy she wasn't fussing. She was supposed to have "school" right after that, but I thought three therapies in a row was just too much for her today (so we canceled). It was a good thing, because she fell asleep shortly thereafter. She woke a few times and cried out but she took a pretty good sleep. When she woke up, she was the same as this morning. Big, frightened eyes and a scowl on her face. Very tense. Definitely not happy (but still not fussing). We gave her a bath and just as the nurse was about to leave at 6, she started getting fussy. I decided to try out the methadone (because they had said it can take a while to work and we should start it as soon as we see her starting to get uncomfortable). It did make her fall asleep, but it was a very restless sleep. Her eyes stayed closed, but she was still moving around a lot and she was very tense. Her arms or legs would tremble because she was so tense. I'm not sure if she just needs to build up an amount in her body for it to work more effectively or what, but so far I'm not a fan. We'll see. If she's awake (and uncomfortable) at midnight or if she wakes up sometime in the middle of the night and is fussing, I'll give her another dose. Hopefully this is going to work for her. We SO need something to work for her on her "bad" days, because those bad days are beyond miserable for her. Please continue to keep her in your prayers.

Tuesday, March 22, 2011

Another good day

Reagan was still going strong late last night but the we eventually got her to sleep with the help of clonidine. She did wake up at one point (I saw her kicking around on the monitor) but she was back asleep by the time I got up at 5am to take my mom to the airport. When she woke up again this morning, she was all smiles and laughs. She's been a doll again today. Lots of sweet little laughs. She's been so precious! I definitely got my wish of another good day with my sweet girl. She did have a slight fever today. More so when checking her left ear, than her right ear. I'm not sure if it has any significance whatsoever but it is definitely out of the ordinary for her. Is it too much to hope for that tomorrow is a good day too?!?!? Maybe, but one can hope! Please keep her in your prayers and if you missed the pics from the zoo and birthday party, check out the last two posts!!

Pictures posted!!!

Check out the blog posts from Sat-Mon for lots and lots of new pics!!!

Monday, March 21, 2011

Birthday Girl!!

Today is Reagan's 4th birthday!!! She fell asleep last night with the help of Clonidine. At some point she did wake up and had gotten herself to the edge of her bed (the pillow we normally have there was missing). She was trying to roll but instead kept banging her head against the backboard. I woke up to the noise and added a couple pillows to keep her from hitting her head again. I went back to sleep and when I woke an hour or so later, she was back asleep but had somehow pushed one of the pillows back out of the way. I was up by 6:40 and she was awake by 7:15. We left at 8 for our 8:30appt with the special needs pediatrician (and were about 15min late). First they weighed her. 36lbs and 9oz. (I measured her the other day and she's 39in tall.) She's such a big girl! Next we spoke to the social worker. Then they always have a dental person come by and talk to us. Each time we say that we already see the dentist over at Texas Children's. The guy we talked to today was very nice and asked us if they had ever put fluoride on her teeth and we said no. He offered to do it (and actually did it for free because the insurance didn't cover it)...it only took a few minutes and Reagan seemed to enjoy the bubble gum flavor! Then we spoke to the pediatrician and he suggested that maybe we try methadone on Reagan's bad days. It can take a day or two to work, so we're thinking we'll start it as soon as we see the first sign of a bad day and then maybe by the time the bad days set it, it will already be working and she won't be nearly as miserable. We'll see. I know it's something that seems to help a lot of kids with mito, so it's worth a try. Reagan is just so resistant to meds...she's a tough one! The whole time the doctor was there, Reagan was laying on the table kicking around and trying to roll off the table! Definitely a turkey! From there we headed over to the zoo! (Reagan's first time to the zoo.) She seemed to like the aquarium the best. I think because it was dark and the tanks were illuminated, making it easier for her to see. We could tell she was definitely interested and actively looking at the things in the aquarium, the rest of the zoo, we're not so sure. Most exhibits just weren't set up for her to see easily from a stroller. And most animals were hard for us to seek out...so with her visual impairment, they were probably impossible for her to see (we saw an orangutan abusing a turtle and are scarred for life). I think she just enjoyed being out. It was a nice day and we walked over every inch of that zoo. She seemed to like the noisy animals...like the yelling monkeys. We took her on the carousel, to the petting zoo, and on the train...we did it all!! Reagan was as good as gold the entire time! Not a peep out of her. Smiling away...all the while chewing on her hand. That hand was trouble. We had to keep it covered because she either had it in her hair or in her mouth at all times! She rubbed her cheek pink and kept pulling her hair down on the left side...but she was happy! And we were happy, because she was happy! So all in all, it was another great day! I'm so glad my girl had a good birthday. Tonight we've seen a few signs of crazy...but I'm still hoping for another good day tomorrow! (Check out Sunday's post for birthday party pics!!)












Sunday, March 20, 2011

Party!

Reagan slept it up last night! She didn't even wake up til right around noon today! She's been in another great mood today. We had her birthday party this afternoon (even though her actual birthday is tomorrow) and she was such a good girl. Very smiley...although still a little sleepy. Any time someone was holding her, she'd try to snuggle in and fall back to sleep! We managed to keep her awake though and she had a great time! We had a bouncy castle and Reagan (and all of the other kids) really seemed to enjoy it. We had a good turnout of 35 people (13 of them kids). Of course, we completely forgot about the pinata and didn't bring it out until there were only two kiddos left! Oh well, those two got a serious load of goodies! Reagan really got her second wind after everyone left and she was still going strong at 11pm. Hopefully clonidine will do the trick tonight. We've got a busy day tomorrow. An 8:30am appt with the special needs pediatrician and then we're going to attempt our first outing to the zoo!

(We took lots of pictures today...so get ready for picture overload!)




Loved the cake (she made it to match Reagan's dress)! I would highly recommend Cakes by Dusty to anyone in the Houston area needing a gorgeous fondant cake! She's awesome!!! (and the chocolate cake was super yummy)







Baby sitter!

Reagan "bouncing" before the party!


Reagan with Shonda (we met her and her family through the blog).



Meghan and Jackson (who also had infantile spasms and is a month YOUNGER than Reagan and was a preemie!!!)


Reagan and my Dad

My mom and I decided to wear our walkathon t-shirts (since we didn't get to walk in them this year)

Reagan trying to bend at the waist to put her hand in her mouth! (this chair was too upright for her, she kept leaning too far forward)




Cutting the cake!


Posing with Janeene and her little girl (Janeene's husband Jason went to highschool with Mike).


Swinging!!!


The pinata we forgot about!


On the bouncer again after everyone left


Mike in action


Loving her Daddy

Saturday, March 19, 2011

Still sleepy

Reagan slept like a rock last night. So much so, she never woke up despite the fact that she was laying in the biggest, stinkiest diaper known to man!!! The second you opened her door, it hit you in the face! She finally woke up and Mike found her rolling around in it! Ugh. It was a MESS! But she was just as happy and sweet as can be! She has been absolutely precious today. So smiley and mellow. Still very sleepy. She slept maybe half of the day today. I'm hoping by tomorrow she'll be more alert. We've been getting ready for the party all day today. Lots of cleaning, stocking up on food, picking up the cake (which is gorgeous, by the way). Very busy. It's after midnight and I'm not even close to going to bed. It's been a long day and it's not over yet!




Reagan last year on her birthday! One of my favorite pics ever! My mom caught her at exactly the right moment. She was very groggy last year on her birthday, but when everyone starting singing happy birthday to her, her face lit up and she was so happy!



Reagan today when Grandma took her for a walk.

Friday, March 18, 2011

Oh glorious sleep!

The little princess finally slept!!! And boy did she sleep. She fell sleep last night (without medicine) and slept through til 10am! She woke up smiling from ear to ear!!! SO good to see!! She was only awake for an hour or two before falling back to sleep again. She's probably only been awake for a total of 4hrs today. This was definitely her "catch-up" day. I'm just glad to see her sleeping...AND smiling!!! Such a sweetie!! Tonight my mom watched Reagan while Mike and I went to the Rodeo to see Allen Jackson. It's been years since I've been to the Rodeo. We had a good time. But now it's time for bed. I've got to enjoy it while I can...it's not every night that I actually get to sleep!


Reagan on her 2nd birthday...3-21-09.

Thursday, March 17, 2011

On our way to good days

Last night was another looooong night. Mike tried laying in bed with Reagan to get her to fall asleep. Well, it worked for Mike, but not for Reagan. So she and I sat up together...again. At 11:30pm I gave her a full pill of Ambien (and adult dose) and it didn't do a thing. Nada. Finally two hours or so later, she fell asleep. She was back awake by 5am...I found her in her bed with all covers kicked off and even her glove pulled off her hand (so she had probably been awake for a while). She never fell back to sleep. Thankfully she's been in a great mood. Very content. She got a little more smiley as the day went on (this morning we couldn't get a single smile out of her). Still no laughs...but I think we're well on our way to good days. Tonight she finally dozed off around 11:15 on her own. I'm going to save the clonidine in case she wakes back up. Hopefully we'll all get some sleep tonight. I'm running on empty! Please continue to keep her in your prayers!


Now I'm starting with the birthday pics. These are from her 1st birthday party...3-21-08.


Wednesday, March 16, 2011

Sleep needed

Reagan was a turkey last night. I was up and down with her (but mainly up) most of the night. It was a loooong night. She was still very fussy, so that made it even more frustrating. I was waiting for the nurse to get here (counting the hours) so I could give Reagan her medicines and go to sleep. Unfortunately that never happened. After I finished up with her medicines, I got a second wind and started cleaning (thinking I could just rest in the afternoon). An hour or two into my cleaning I heard a noise. I went into the therapy room to check on Reagan and her nurse was missing. Turns out she was in the bathroom throwing up. Apparently she ate raw oysters last night and got food poisoning! She went home minutes later. So much for my nap (or anything else I had planned to do). Thankfully, Reagan was not fussy at all today. She was still very tense, having lots of chorea, trying to bite herself...but no crying. She also had 3 substantial dirty diapers today (very unlike her) and 3 foamy throw ups. I'm hoping that the appearance of nausea/vomiting today means that we are almost done with these bad days. I could sure use some sleep tonight! It's 10:30pm right now and Reagan keeps going from wide awake to asleep. Not sure what that means. Tonight I'm breaking out the big guns. I've been given permission to use a full dose of Ambien. And if that doesn't work, we can still try clonidine (since they are different types of meds). We've GOT to get this girl sleeping again! Continued prayers are appreciated!!



Reagan 3-16-09 (with her all time favorite toy)...smiling even though she was sick.

Tuesday, March 15, 2011

Fussy butt

Sleep wasn't great last night, but it could have been worse. Reagan fell asleep on her own but then woke up at 1:30am very fussy! It was time for a dose of clonidine...too bad it took an hour to work. She kept falling asleep but every time I moved an inch, she's wake up and cry. I eventually got her back in bed and she slept til about 5:30. Today she's been very fussy, but more moaning than actual crying. We also had some brief moments of quiet, where she was agitated but not actually fussing (yesterday the crying was nonstop). She's been very high maintenance today. Still trying to bite her hand, so we've had to be very careful again. Lots of chorea and some little fits of the crazy running in place sort of chorea. Definitely fits the category of a "bad" day. I'm hoping we'll start to see some improvement tomorrow. Please continue to keep her in your prayers!



Sorry...no pics from this day in history. Here's a current pic.



Peaceful after a dose of lortab (if only for 15min). Look at how big she is! Definitely a 4yr old!

Monday, March 14, 2011

Suffering

Reagan slept well last night, again without the help of clonidine. Thank goodness...we sure needed our sleep because today has been one heck of a day. To say she's been miserable is an understatement! She woke up OK, but by the time the nurse got here at 8am, she had already had several meltdowns. From then on, things just got worse. Reagan was crying every waking moment. Finally around 10:30 we resorted to giving her lortab. It made her sleep for an hour or so and then off and on (in between screaming, crying fits). We HAVE to find something that really works for her. This is ridiculous that she should have to suffer like she does! And the finger biting has been out of control! She chomped down on her left pointer finger today (which was covered with two socks). At first I thought she just had the sock, but then as I tried to pull it out from her clenched teeth, it became clear that she had her finger as well (but wasn't letting go)! Thankfully she didn't break the skin, but she got it pretty good. She'll definitely have a big time bruise on it tomorrow! Then tonight she chomped down on her right hand (that was also covered). I just don't know what we're going to do with her?!?!? Right now she's got both arm restraints on, but she's so strong, she can still bend her hand to her mouth if she's determined enough. She finally just passed out on her own tonight. I'm hoping she sleeps through the night, if not I'm going to have a loooooooooong night on my hands. This is a very stressful situation for all of us. Please keep us all in your prayers.


Reagan on 3-14-08...definitely a better day than today! I still can't believe those cheeks!!

Sunday, March 13, 2011

Definitely off

Reagan had another decent night's sleep last night. She fell asleep early (around 9:30...well that's early for her), so when she woke up at midnight and was WIDE awake, I just gave her some clonidine. It must have worked because I didn't hear another peep out of her til this morning. When I went to her room to pick her up I could tell things were "off". There were no smiles, she was very serious, and she's been that way all day. She's had a few instances of crying/fussiness, but overall she's just been very tense and serious. She's definitely trying to bite her hand, a few times she chomped down on the sock protecting her hand and would not let go! She's like a little snapping turtle. We definitely have to keep an eye on that. On a side note...her feeding pump is about to drive me crazy! Every night I make up her new batch of formula, I filter out any clumps, and put it in a new bag. Then I attach it to her and go to bed. Last night it had been running for maybe 15min, just as I was falling asleep, it starts beeping (and woke Reagan up)! No food. Liar! It's not clogged or kinked...it's just doing this for no apparent reason! The only thing I can do to get it to run again is to dump all the formula into a new bag! Problem is, we only get 30bags a month! I don't know why it keeps doing this, but I want to KILL it! OK...enough venting. Time to go to sleep. Please keep Reagan in your prayers!

This is a picture of Reagan from 3-13-09 with our favorite phlebotomist, Sangita. She's the only one that could ALWAYS get Reagan on the first stick (when she was just a little one).

Saturday, March 12, 2011

CPR certified

Reagan slept through the night again without any sleep medication. She woke around 5am and laid there "talking" to herself til 7. It was too cute. I got up at 7 so I could start doing her meds. Before I picked her up she did a startle that really freaked both me and my mom out. Not sure why she did it, although this morning she did seem a little hyper sensitive (she kept squinting her eyes and when I blew on her it would cause her to startle). I'm sure it was nothing (she's actually had an EEG done when she was hypersensitive like that and it was NOT seizure related)...but things like that always scare me. This morning my mom, Mike, and I all went to a CPR class. It's something I've been wanting to do for a long time and we finally got out and did it. Reagan's nurse came and watched her so we could go (she usually doesn't work on weekends). The class was good. I feel educated now and more at ease if ever I have to perform under pressure. Reagan was a doll the whole time we were gone. And even though she's been super smiley and in a great mood all day...we are seeing the signs of things to come. Her temperature regulation has really been off today. Her upper body is warm and clammy and her feet are like little icicles! She was sweating so much, her pants and shirt would feel damp, but her lower legs were so cold, we had to put legwarmers on her!!! Those little legs have also been very shaky today. I guess if she's going to have some bad days, I'd prefer she get them out of the way at the beginning of the week, so she can be happy for her birthday party this weekend. Another thing I've been noticing (tonight in particular) is when she first falls asleep, she's very twitchy/jerky. I don't know if it's related to the neurontin, but I don't remember her doing this before. It's only when she's in that light initial phase of sleep that she does it, but it can go on for a while and I'm definitely not a fan. Here's hoping she has another good night's sleep tonight! We can all certainly use it!

Here's a pic of Reagan (& Bear) from 3-12-08. Bear has that terrified look on his face! He used to be really scared of Reagan because she would cry so much!

Friday, March 11, 2011

Super cute

Reagan slept well through last night til about 6am this morning. She was just laying there, chewing on her hand and rolling sideways, so I let her be for another hour or so. Shortly after picking her up, she had a big dirty diaper (the first of two big blow outs). This new laxative (Milk of Magnesia) is definitely working...although maybe a little too well! All of her dirty diapers are very liquidy and quite explosive (and stinky). The good thing is that they don't seem to bother her in the least and she's finally going more than once every 5-6 days. She's been in a good mood again today. So super cute...making little noises like she wants to talk to you. Very smiley, super spitty, and her hand has been in her mouth or in her hair at all times. My mom and I have been busy trying to finish planning Reagan's Birthday party (for next weekend). It can be a little stressful (I'm not much of an entertainer), but hopefully we'll pull it off. My little princess deserves it! I'm definitely praying for a "good" day the day of her party, so she can acutally enjoy it and everyone can see her cute personality. Thank you for your continued prayers!!




Super cute 3 years ago on 3-11-08 (this was the day we found out about her first cataract)...