Sunday, June 30, 2013

Hello there??

Reagan was a little restless last night. Mike said she was moving all around and getting herself sideways and kicking her bed (he got up and adjusted her)! I never heard a peep until 6am when Ryan woke me up (that's what I get for being up til 2am)! Of course with all the craziness of last night (see Saturday night's post Clogged, in case you don't know what I'm talking about), I had crazy vivid dreams and didn't get much of a restful night's sleep myself! I got up with Ryan at 7am and Reagan was quick to follow and then went to the airport to pick up my mom at 8am! She just flew for a quick stay to help me pack/get organized. Let's just say that Grandma was thrilled to see her girl so sweet, alert, and smiley!!! Me too...but not sure how long it's going to last. She had super cold/clammy hands and feet today (and a sweaty back with a tad of bad day smell). I'm hoping she proves me wrong and keeps having all good days. I was just telling Mike today, how wondeful would it be if she was like this all the time?!?!? It would be a dream come true! Well, we're planning on a Fourth of July trip to Austin so I'm sure hoping that she either gets the bad days out of the way now, or is some how, some way able to skip over them this go round! Please keep that in your prayers. Now, on another note...you know that book "Are you there God? It's me, Margaret"? That's how I'm feeling about the blog right now! I know, my husband would call me needy...but seriously, I haven't had one single comment in almost a month!!! It's unheard of! I kind of feel like I'm this crazy person just talking to myself!  It's funny, because I often think of what I'm going to post ahead of time (sometimes the entire post, word for word goes through my head), and to be honest, it's usually much better in my head (never fail, I end up forgetting something when I finally sit down and have time to write it)! And it doesn't help that I still have a serious case of the mommy brain fog...sometimes I can't even string together a coherent sentence! But thank you, faithful readers, I know you're still out there. Thinking of us and praying for my girl. It's a major commitment to read a blog that posts every single day! I've been posting every day (sometimes more than once a day) for more than 5 years!!! That's over 2000 posts! Crazy! I know I've said before that this blog is primarily for my own record keeping, but the support I've gotten through it over the years has been priceless! Friendships, words of encouragement, prayers that have certainly been answered...it really is priceless! So please, know that each and every one of your comments is appreciated and I highly encourage you to post them (even if I'm not able to directly answer them)! So please, keep reading, keep praying, and stay in touch! Speaking for all parents of special needs/medically fragile children, this is a lonely road we walk and it's nice to know that we're not alone!

Saturday, June 29, 2013

Clogged!!!

Oh my goodness..It's 1:30am and I'm still up! (Ryan is up too...I think he could sense that I was awake!) Yeah, what a night. I was super late in doing medicines (usually I'm done by 10:30-11pm) and the last medicine I tried to give Reagan was her Alpha Lipoic Acid. I've noticed that it doesn't want to stay in solution...maybe it's just not water soluble and I should try using formula...but tonight it clogged her gj tube! Big time!! I couldn't get anything through it! I tried using a 60ml syringe with warm water and pushing and pulling, pushing and pulling...nothing. Finally I switched over to Coke (actually Coke Zero)...but that wasn't working either. I left the Coke attached and woke Mike up (as I was freaking out a little) and let's just say thank God for strong husbands! He came out and said it was done! I think it was more Mike, than the Coke, but whatever! It's out! I was picturing us having to go into the ER in the morning...not fun, not fun. Anyway, what a rotten end to a really good day for my girl! She was great today. Super sweet and super smiley. I've got to get to bed, but I'll leave you with a couple pics!



Friday, June 28, 2013

Calm, content, and still

Reagan was restless last night, of course, since we didn't have a night nurse! She sleeps (or is capable of sleeping) through the night when we have a nurse, and when we don't, she's up most of the night. She wasn't fussy or anything, so we were able to leave her in her bed. She was a happy smiley girl this morning, so that was awesome! She was actually beyond precious today! Very calm, very content, very still. She had PT this morning and she was great for that. Then she had vision...she was just so attentive today, it was a great day for therapy! She did doze off a couple of times today, but just for brief periods. It really was such a wonderful day for my girl! I would do anything for her to have more days like this! I spoke to her GI doc yesterday and we are going to try to come up with a plan (before we move) to try to get back to where we were a couple months ago. He had some suggestions to try to get her bowels moving better (to keep her cleaned out and with the least amount of gas and stomach pain possible), that involved using a tube multiple times a day (I'll let you use your imagination), but as of now it doesn't look promising. Good idea, just not the correct tool. We also discussed changes we could make to her formula, but I really think that is going to have to be ironed out with a nutritionist. It sure would be nice to get her feeling better all of the time! My girl deserves more days like today!

Thursday, June 27, 2013

Super cute

Reagan slept OK last night. She did wake around 4am, but her night nurse picked her up and got her back to sleep. This morning she had an early 8:30am Genetics follow up, so we had to wake her at 7:30am to get her dressed! We left just before 8, but still managed to get there just a few minutes after 8:30am (my days of being 15-30min early to appts is long gone). We had a looooong talk with some med students and genetic counselor (ie complete medical history) before finally seeing the doctor almost 2hrs later (gotta love teaching hospitals). She quickly went through the results of Reagan's exome sequencing (which we got several months ago) in more detail. I appreciated the fact that she did tell me a few new things (although I certainly don't remember the details...wish I would have taken a recorder), but in the end it's the same old news, they still have no clue what her genetic mutation is! It did feel a bit like a waste of time, thankfully Reagan was in a great mood and didn't seem to mind one bit! Ryan, on the other hand, was a handful and ready to take a nap! We came home and Reagan had OT and then PT this afternoon (followed by an hour in the stander). She was a little sleepy off and on today, but in general she stayed awake for the most part. Tonight she was dozing off but woke the second we put her in bed...hopefully she'll get some sleep tonight and have another smiley day tomorrow!



Wednesday, June 26, 2013

Sleepy but oh so sweet

Reagan slept well last night. Her nurse watched her closely, she made a couple of gaggy sort of noises, but she never threw up again. We kept her on pedialyte all night/morning and then switched her over to half pedialyte/half formula this afternoon. She was super sleepy this morning and probably would have slept all day, but she woke up when the nurse changed her diaper at 1pm. She woke with a huge smile on her face...so I was much relieved! She seems to have finally turned the corner. She was a sweet smiley girl the rest of the night! Hoping she has a nice long stretch of good days ahead of her! We have a super early genetics appt tomorrow morning, so it's time for me to get to bed early for once! (by early, I mean before midnight) Thank you for keeping our girl in your prayers!

Tuesday, June 25, 2013

Nauseous again

So tired! Trying to pack and organize our house AND two nights in a row of going to bed at 1am and then waking multiple times to an unhappy Reagan makes for a very exhausted mommy! That being said, I'll make this quick. Reagan was very similar today to yesterday. Very tense, constant extension, constant movement. She was on edge this morning but after helping her go potty, she seemed to loosen up a bit. Then this afternoon she got very nauseous. Less gagging/retching, more actual throw ups. Lots of fluid. Poor girl. Tonight I made the executive decision to switch her over to pedialyte. Hopefully that will do the trick. I'm wondering if this is the culmination of her bad days and once the nausea goes away, she'll be back to all good days (like she used to do)! I hope so! My girl certainly deserves some better days! Hopefully she'll have quite a few of them, since we do have plans to travel on the Fourth of July weekend!! Please keep her in your prayers!!

Monday, June 24, 2013

Uncooperative body

It was a rough night last night! I went to bed right around 1am and Reagan woke up at 2 crying. Mike got up with her, but she was not falling back to sleep! I got up and gave her a dose of Lortab and eventually she did go back to sleep. She woke again at 4am crying. I moved her into her chair and she seemed to settle down and fell back to sleep. Both she and her brother woke up early though, so I'm pretty exhausted today. Our morning wasn't any more relaxing! Grandma was cutting some shrubs and broke a branch off, slitting both of her hands open! I had to take her to urgent care where they gave her 3 stitches in one had and 4 in the other! Then, only 15min after getting home, I ran out to my car to get a box and I found a big snake right behind my car! If I hadn't seen it, I would have surely stepped on it when opening my car! Scary! Just as we armed ourselves with shovels, he retreated behind some paint cans. I called Mike and he drove home from work and killed it for us! We thought it was a copperhead, but Mike now thinks it's a bull snake. The markings definitely resembled that of a bull snake, but I remember it having a triangular head characteristic of a venomous snake. Who knows. I'm just happy it's dead!! Lots of drama today! Reagan had an OK day. Her mood was improved, but her body was out of control! Tons of movement. Kicking around nonstop, rubbing her nose, hands in her mouth! Poor girl. Her body was SO tense!! She was extending like crazy, making it almost impossible to hold her! And sweating profusely on her back. Poor girl...I sure hope she can get some rest tonight! She needs it!

Sunday, June 23, 2013

Better but still on edge

Soooo tired...this is going to be a short one. Reagan had a better day today. She's still not her happy self, but she didn't cry (fussed a little), which is a big improvement. She was still very much on edge today and did not want to be touched again! Hated having her diaper changed, still not a huge fan of Mommy! Not a huge fan of her brother's screaming either! None of us are! I'm not sure what Ryan's problem was today, but he threw several temper tantrums and he was by far the most difficult he's ever been! It might be time to call Super Nanny! But at the same time, he would have moments when he'd just go sit in the therapy room and watch The Cat in the Hat and he would be as good as gold! What are we going to do with this boy?!?! Praying for some improved days for my girl this next week and maybe Grandma will even get a few smiles before she leaves!

Saturday, June 22, 2013

Rotten day

It's been a rotten day for my girl! And a rotten night! We started her out in her bed, but that didn't last long. She spent most of the night in her chair...and the entire day today. Lots of crying, lots of tears, especially this morning. She was SO miserable. Nothing was helping her. It was rough. Then this afternoon/tonight she finally got a little better. Less crying, just the occasional fuss, unless you messed with her! Hated diaper changes, didn't want me coming near her with her medicines, just wanted to be left alone! Poor sweet girl. On a good note, no nausea (but that's generally the case...can't be crying and nauseous at the same time). One thing we did notice yesterday, she has bruises on her wrists. They are worse on her right wrist (a couple bigger ones) and then smaller and less noticeable on her left wrist. I have no clue what this could be from! Her Thurs/Fri nurse does like to hold her hand down to keep it out of her mouth...but she doesn't hold it tightly and it's usually just her left hand (and that's the one that doesn't look as bad). I don't know if there's a medical reason that she's bruising more easily right now or what? We were wracking our brains trying to think of how she might have gotten them, but we can't figure it out. Tonight she dozed off on her own and is now sleeping soundly in her bed (although she is moving a bit more than initially). Praying she stays asleep and wakes up tomorrow feeling much better!

Friday, June 21, 2013

Turn for the worse

Almost forgot to do the blog!! Reagan had a good day today for the most part. She slept OK last night and then was smiley again this morning. Still clammy hands, chewing on her fingers a lot. I was looking at her this afternoon and noticed she was missing another tooth! Her right upper lateral incisor has been loose for a while, but she must have finally given it a good enough yank today! I found it laying on the floor under her swing! As the day went on, she was definitely getting more tense and easily excitable. We gave her a bath but then tonight she took a turn for the worse! Lots of crying. I was able to hold her for a while and she actually was semi calm...even acting like she wanted to laugh! Poor sweet girl! The Lortab didn't seem to do anything but the Clonidine did finally help her fall asleep but shes already back awake and crying again! :( It's going to be a long night!!Please keep our girl on your prayers!

Thursday, June 20, 2013

Smiley, tense, with a side of nausea

Reagan slept, but was still pretty restless last night. She woke up this morning, still sweet and smiley, but her body has been pretty tense and she's moving a lot more (very kicky and constantly chewing on her fingers). She did well with her therapies today, OT fed her this morning (among other things) and then after PT she stood in her stander for an hour! Tonight she was a little more easily excitable (she would vocalize, not fuss, but you could tell she was on the edge). Not a fan of talking (or yelling at the basketball game)! Then she started making a lot of mouth movements and gagged/retched a couple times. I don't like that at all! I tried draining her tummy, but nothing at all came out. Earlier I did have to help her go to the bathroom (going on her own just isn't happening much lately), but she had a lot in there, so I was hoping she might have some relief. It definitely looks like we're headed in the wrong direction right now, but hopefully I'm wrong! Please keep her in your prayers!

Wednesday, June 19, 2013

Restless but sweet

Reagan was restless last night. Her nurse had to hold her most of the night because every time she tried to lay her down, she'd just wake back up! Despite not getting a great night's sleep, she woke up this morning sweet and smiley once again. She had another good day today. She only had one therapy today...speech. She ate some oatmeal and seemed to enjoy that. She was a little more restless today, lots of kicking those legs and chewing on her fingers. Hands were a little cold and clammy, but that may have just been because they were in her mouth more. Tonight she was very jumpy. She fell asleep on my lap but kept twitching. Eventually she settled down a bit and Mike tried to lay her down, but she immediately woke back up. Her nurse held her and she's back asleep again. Hopefully she'll be able to get some sleep tonight. Praying for continued good days for my girl!

Tuesday, June 18, 2013

Sweet and smiley

I think Reagan slept last night, of course, I took a Benadryl for my horrible allergies so I was completely out of it, but I think she slept! I do know she was awake when we woke up though, so maybe it wasn't that restful of a sleep. She's been a sweet smiley girl again today, so that was great! I'm loving all of these smiles and so are her therapists! She had PT, speech, and OT today and she did great for them all! Her brother was coming over and kissing her during PT! I tried to get a picture but you know how that goes! Hopefully the smiles and good days continue!







Monday, June 17, 2013

Sweet girl

Reagan slept well last night and woke up this morning super sweet and smiley! She's been a good girl all day today. There were a few times, you could tell she was getting a little aggravated with her brother's fussing/crying, but overall she was pretty easy going today. She had OT this morning, but that was her only therapy today. This afternoon we had the pleasure of meeting a mom and her little 1.5yr old girl who has been diagnosed with Leigh's disease. She was too cute! Totally reminded me of Reagan at that age. I remember carrying her around nonstop (just as this mom did)...I kept pulling a chair out and telling her to sit! Oh, if I only knew then what I know now! Stressful times...very stressful! And even though Reagan hasn't made a lot of developmental progress over the years, she's holding her own overall! She's just as cute and spunky as ever! Boy do I love this girl!! (Speaking of boy...her brother fell tonight and whacked his head on a chair! Now he's going to have a purple head to go with his purple lip! What are we going to do with this clumsy boy!)




Sunday, June 16, 2013

Happy Father's Day

Reagan slept well last night. She was a good girl today for Father's Day. Yesterday she was really sensitive, but today she seemed better. Calm & smiley. She still had a slight low grade temp again this morning, but she was fine this afternoon. Other than that, nothing out of the ordinary. She did kick my cell phone right into my lip and then trip her brother leaving him with a busted up lip (but I don't think she did either on purpose...or did she)!?!? I'll leave you with one of my all time favorite pics...no one can get her to sleep like her Daddy! Hope everyone had a Happy Father's Day!!

Saturday, June 15, 2013

Too soon for tears

Reagan slept well last night...we all slept well last night! Daddy came home from his business trip last night and Grandpa left this morning, so it was back to business as usual today. Reagan was doing well this morning, she seemed pretty laid back (although she's back to putting her hands her mouth today). But as the day went on, she got more tense. Maybe it was her brother's crying, maybe it was the tile guy grinding tiles and making noise...but she was moved to tears several times today! Wasn't a fan of us talking, or of the loud television. We were supposed to go to her cousin's birthday party today, but we ended up sending brother and Daddy instead. There's no way she could have handled all of the chaos of a children's birthday party today! So we had some quiet time while the boys were gone...it was nice. She seemed better this afternoon/tonight. Maybe it was because I helped her poop and her tummy was finally feeling better, who knows. She did have a slight low grade fever (99.6) early this afternoon, but it went away by tonight. Hopefully she gets a good night's sleep tonight and wakes up tomorrow a happy girl for Father's Day!

Watching cartoons this morning


Trouble!

Friday, June 14, 2013

OK but a little on edge

Reagan had a bit of a rocky start to sleep last night. She fell asleep but then woke up full out crying around 12:45am. I was still up so I ran in there, but she had calmed down and was quiet by the time I got in there. She was awake but quiet, so her night nurse picked her up and held her. She did fall back to sleep, but her night nurse continued holding her for a while. Not sure what it was that caused the crying. She woke up this morning calm and quiet. She's been very still all day today. No hands in the mouth, not a lot of movement period. Very unlike her. She had PT this morning and vision this afternoon. Overall she was good today, but she did have several instances where she was a little easily agitated. There were a few times that she started crying when we were talking amongst ourselves (she hates that). And then tonight she seemed to be having tummy pains (and it's been a few days since she's gone potty), so I helped her and sure enough...she was clenching it in! Poor thing. That's got to hurt her tummy! I'm hoping she feels better tomorrow, but at this point I have no idea what to expect this weekend. Please keep our girl in your prayers!!

Sleeping in a little this morning


So still...those hands never hang down by her side like that!


Asleep on mommy tonight

Thursday, June 13, 2013

Swimmers

Reagan slept fairly well last night...even though most of it wasn't in her bed! She woke up at 2am and the night nurse picked her up and held her, and she fell back asleep and slept til 6am on her lap. She laid her down in her therapy room and she slept there til right around 8:30am or so. She woke up quiet but very serious. She seemed to perk up a bit as the day went on. She had OT this morning and then PT this afternoon and she did well with both. Then this afternoon we took advantage of the fact that Grandpa was visiting and we took the kids swimming (in our neighbors pool)! Reagan had been a little sensitive/easily startled all day, so I didn't really think about how she might be affected by the wet and the wind until we were already in the pool. It took her a while to relax and she did not seem to be a fan of her neck floatie at all today (WaterWayBabies)...she kept acting like it was choking her. So I just took it off and held her most of the time. Ryan, on the other hand, loved the neck floatie. He was swimming all around with that thing! Of course, his favorite thing to do was trying to climb up the side of the spa. Thankfully, the neck floatie kept him from whacking his head on the edge several times! Now, we do need to come up with a better solution for Reagan, since we're hoping to get her in the pool a lot this summer. There are two other options I have heard about and while they look similar, there is a huge difference in price! One is the Kiefer pediatric swim collar ($40) and the other is the Danmar aquatic head float ($100+). Reagan does have a Danmar hensinger collar (which she has rarely ever used), but we've never tried the float. I'm not sure which is best, or if there is even a difference, but I think I need to make a decision soon because the waterway babies float is not cutting it for her anymore! I also need to get her a special needs swim diaper, because the size 6 pampers splashers swim diapers just aren't working either! Poor girl had a huge wedgie the whole time!! I've found a few options for these...Amazon has some, Etsy, and so does e-Special Needs. Please let me know if you have any suggestions!

Wednesday, June 12, 2013

From laughing to crying

Reagan had a good night's sleep last night. She woke around 6am this morning and she was all laughs! She did get her night nurse with an overflowing wet diaper, so maybe that's why she was laughing! I was so happy to see her awake and happy, but you just never know with these laughs (they can go from happy to sad in seconds)! Then right around 10:30am her tone changed. She started getting a little fussy and then the tears started! She kept making little grunting noises that made us suspect she needed to go potty. I had to help her, but boy did she go! And then she surprised us with another waterfall of pee! What a mess!! She was still very fussy, so I gave her a dose of Lortab. Her speech therapist came and she held her and worked her magic on her and she fell asleep. That didn't last long and she woke back up shortly after she left. Her nurse held her in the rocking chair and finally Reagan was able to doze off. And she continued sleeping for 3hrs!! When she woke, she woke with the laughs again (better than the cries). She laughed the rest of the afternoon but just as the nurse was leaving for the day, you could tell she was getting more on edge. I gave her some Lortab, but it didn't prevent the tears. The crying started back up around 7pm and lasted until I gave her some clonidine. She finally dozed back off laying on her Daddy (it was amazing she could sleep with all his snoring)!! Right now she's sound asleep in her bed...hopefully she stays that way and gets the rest she needs! Praying for a better day tomorrow for my girl!

Tuesday, June 11, 2013

Awful day

Reagan had a bit of a rough night last night. Daddy tried to get her into her bed, but that was NOT happening. She was very fussy and resisting sleep, even though she was clearly tired. She did eventually fall asleep, but she woke around 2am crying! I got up with her and tried to get her to settle down, but it wasn't until the Lortab took effect that she finally calmed down and went back to sleep. When she woke up this morning she was shockingly calm. She even gave us some little laughs, but apparently this was just the calm before the storm, because shortly thereafter the !@#$ hit the fan! She was screaming crying, tears streaming down her face! Poor girl. It was an awful day. Nothing really seemed to help her. She did doze off for a couple of naps, but it was short lived. If she was awake, she was crying. But then tonight, about 30min before our night nurse got here, she settled down. She was sitting beside her Daddy in her chair and she quieted down. When the night nurse got here and spoke to her, she even gave a little laugh! Then she took her into her therapy room and picked her up and held her and she dozed off to sleep! I'm praying that she'll sleep tonight and wake feeling like a new girl tomorrow! She certainly needs some relief!

Monday, June 10, 2013

Tense today, crying tonight

Reagan was restless again last night. She was kicking around a lot...I have no idea how much sleep she actually got. This morning she was asleep, but laying completely sideways in her bed! She woke up in a good mood, so once again I breathed a sigh of relief. Good, is a little bit of an exaggeration, but she was OK. About the same as yesterday, still on edge, body super tense, lots of face rubbing (her poor little nose is all red), hands in the mouth, etc... She definitely got more tense as the day went on....whimpering and little moans that make me think her tummy was bothering her. From about 5-8pm it got worse. I tried giving her a dose of Lortab. Nothing! Then at 8, the crying started! Serious crying. Gut wrenching crying, with tears streaming down her face. My poor sweet girl! I gave her clonidine and again, nothing! The tears continued to flow! She was SO tense...you could tell something was hurting her! She was acting a little nauseous, so I tried draining her tummy. She did have some fluid and air in there, not a ton, but enough. Shortly thereafter, she dozed off. She was very restless and kept moving around but she stayed asleep for a bit. Then she woke up and was moving around again (and acting nauseous again) but thankfully not crying. I was nervous to move her at all, but decided I needed to get her upright, so I put her in her chair and she dozed back off. No idea what to expect for the rest of the night (or tomorrow for that matter), but I pray that she can get some rest and wake up feeling better! Please keep our girl in your prayers.

Sunday, June 9, 2013

Still on edge

Reagan didn't sleep well last night. She was very restless and we're not sure how much, if any, she slept! When I picked her up this morning, she did have a dirty diaper (small one), so maybe that was keeping her up? She was still smiling though, so that's always a good thing! She's been pretty good again today. A little more on edge than yesterday (even more sensitive to noises), but I think her tummy is giving her trouble. She did finally have another dirty diaper, but I had to help her and I wouldn't be surprised if there's more where that came from! Tonight she was tired and trying to doze off but her body just wasn't cooperating. She'd doze off and then a few seconds later, she'd tense up and be wide awake again (over and over again). Praying she's able to get some sleep tonight and that she continues with good days this week!

Saturday, June 8, 2013

Good but still a little tense

Reagan had another good day today. She slept well last night and woke up this morning smiling. She was pretty laid back all morning. Sweet, smiling, warm hands and feet. We all hung out in the therapy room watching Ryan's favorite...The Cat in the Hat knows a lot about that (he's obsessed with it)!! I attempted to organize some stuff premove, her therapy room is packed FULL! Still no official date on that. We were originally thinking mid July, but it may be closer to the end of July. No idea. Kinda makes it hard to plan! Tonight Reagan was a little more tense. Sensitive to music and voices (mine in particular). I'm hoping she gets a good night's sleep tonight and wakes up happy again tomorrow!





Friday, June 7, 2013

Smiley but excitable

Reagan had an almost identical night to last night. She woke around 2am and her nurse picked her up, then she fell back to sleep and was put back in bed around 3am! I was very relieved to see smiles on her face when she woke up this morning! She was smiley but still on edge (especially this morning). She had vision therapy, so her therapist just took care not to over excite her, and she had a great session...she was very attentive. Then this afternoon she had a make up session of OT and she did OK with that as well. She's still pretty tense, lots of extending, which makes it difficult to hold or move her! I'm hoping she'll hang in there and continue with good days. We need this formula/duocal combo to work for her...otherwise, it's back to the drawing board! Please continue to keep her in your prayers!

Thursday, June 6, 2013

A little kooky

Reagan slept fairly well last night. She did wake up again at 2am, her night nurse picked her up and changed her and she fell back to sleep. She put her in her bed around 3am where she slept til 10:20 or so! No OT today (she was sleeping), no speech (she was tied up with car trouble)...but she did have PT. She did OK during PT but she was so tense, she could almost stand up on her own! We took advantage of the tone and put her in her stander after PT. She did well with that, but she was a little easily excited by the iPad. She was a bit easily excited by everything today. We were definitely walking on eggshells with her at times today. Overall, she's been good...smiling and laughing and sweet...but neurologically she's been a bit crazy. Tonight, she'd be perfectly calm and then get a random burst of energy and start laughing and kicking around! I'm not sure where this is going, but hopefully she'll hang in there and continue to have good days. It's way too soon to have bad days again (her last one was just last Thursday)! Please keep my girl in your prayers!





Wednesday, June 5, 2013

Last day of school

Reagan woke up last night around 2am, so her night nurse picked her up and she fell back to sleep. She tried to lay her back down, but she woke up the second she moved, so she just held her. She woke again around 6am with a huge poop! She had two more before 7:30am! And then one more before 10am! That's FOUR! And let me tell you, after that fourth one she really lit up and was smiley...she had to have been feeling SO much better! She's actually had a really good day today (although hands and feet are still cold and clammy)! She's been super sweet and smiley! She had OT this morning and then speech at noon. She really enjoyed eating some Hawaiian Delight smoothie baby food...she gobbled it right up! Then this afternoon she had her last session of school with her beloved teacher Mrs. Rose. Boy are we going to miss her (and all the cute hand art she did with Reagan)! School is officially out! Party!! Not really. Not a lot of changes to our girl's schedule!





Tuesday, June 4, 2013

Sweetie Sweetness

Reagan was a little restless last night. She was hesitant to fall asleep, so I gave her clonidine. She did eventually fall asleep...but she woke in the middle of the night crying! Daddy got up with her and was able to settle her down and get her back to sleep (but no clue why she was crying). Thankfully, she woke in a good mood and has been a sweet girl all day today. She had OT this morning and did a great job with that. She's been pretty mellow and at times, completely still (which for her is very unusual). Although, her brother's crying did seem to get to her a few times. Hands still cold and clammy. The bite on her arm looks a little better but it's still red. We went to the pediatrician and just missed the phlebotomist, so we'll have to go back again to get her blood drawn for the EPI-743 study. According to their scale, she's gained another 3lbs (44lbs)...but I'm skeptical, so we'll reweigh her next week at her GI appt. Ryan is 27lbs 14oz (87%), 99% height, 99% head circumference! He's a big boy! He's been a handful! Very fussy/whiny...I've had a headache for a week now and I'm guessing he is responsible! Ryan needs to take some lessons from his sister on sweetness!!



Monday, June 3, 2013

Sweetness

Reagan slept well last night, but both she and her brother were wide awake and ready to get up by 7am! She's been a sweet girl today...but still not super smiley. Her hands are still cold and clammy and she was a little burpy/chokey at times (reflux?)...but overall pretty good. She does have this huge bite on her arm though. I first noticed it Friday night (it just looked like a small little bump...I couldn't even tell if it was a bite or scratch at first). Then Saturday it was huge and red and looked very much like a bug bite. Sunday it was even bigger and had a white ring in it. And now today it is less swollen but still has a hard bump in the middle and the outer edge has spread out a little. I think it's just her "normal" response to a mosquito bite...she is SO sensitive! Ryan has a 15mo well baby check up tomorrow, so we're just going to take her in to get checked out as well (and it's time for her EPI-743 bloodwork). So, other than the bug bite, it's been a pretty good day for my girl. She had vision/OT and school (this is her last week) and did great with those. She's still not giving Grandma any laughs, but she'll just have to settle for sweetness!



Sunday, June 2, 2013

Calm and quiet

It was a long night last night. Reagan's pump decided to give me a run for my money! I woke up around 3am and heard it beeping. I have no idea how long it had been beeping, Reagan was laying there wide awake, so my guess is it had been a while! I got up and reset it (false alarm, no food, when it obviously was full of food) and went back to bed. It went off at least another 4 times over the next couple hours (each time I had to get up and reset it to get it running again)! Then right around 6:30am Ryan woke up and started talking. I left him there until he started fussing 30min later. I've been up ever since. Needless to say...I'm exhausted today! Reagan slept in a little this morning and woke up after Grandma had already gotten here. She hasn't been particularly smiley today, but she has been sweet and cuddly. Her body is still pretty tense and she long overdue for a dirty diaper (or two or three). We got a few giggles out of her, but overall she's been calm and quiet. I'm hoping for a good week this week and that Grandma gets to see some smiles before she has to leave!

Saturday, June 1, 2013

Much better

Reagan had a MUCH better day today! She slept well last night and woke up sweet and giggly this morning! Her temp regulation is still a bit off...super cold/clammy hands and feet...but overall she's been great! Very laid back, happy to scoot around on the floor or sit in her chair, so glad to see her feeling better! I'm interested to see how she does on this new formula/duocal combination. We've just GOT to find something that works for our girl. I hate to think that she's been suffering like this for 3+ years and no one ever figured it out! I really think this is the key to making her a much happier camper! These last couple months she's slept better, had milder bad days, fewer bad days, etc... We've got to figure this out! So looking forward to some great days this week with my girl!