Saturday, June 30, 2012

Lazy Saturday

Reagan did finally mellow out last night and she ended up getting a decent night's sleep. She did wake up a time or two laughing, but she went back to sleep quickly. She woke up smiling again this morning and had another great day today. We didn't do much, we had some seriously wet weather, but she was happy to just roll around on the floor and sit on Mommy's lap (when Ryan wasn't occupying it). She's had a few crazy laughs today, but nothing compared to yesterday. Actually, she's been pretty easy going and calm today. I'm hoping for another good night's sleep tonight and another happy day tomorrow!! Thank you for checking in on our sweet girl!!!

Friday, June 29, 2012

Crazy laughs

Reagan had a decent night's sleep last night. She woke up around 1:15am and the night nurse picked her up, but she fell back to sleep by 2:30 and slept the rest of the night. She woke up this morning around 9:30am and has been smiles and laughs ever since. She had PT, speech, & OT today and she did great for all of them (and somewhere in between her nurse even got her out for a walk). Reagan was slightly nauseous this morning but never threw up and she didn't have any problems eating during speech therapy. She did have two minor meltdowns today...once when her PT was stretching her feet (she must still be a little sore from the casting yesterday) and then again when the dog was barking this afternoon. Both times it only took her a minute or so to recover and other than that it's been all good. She's been VERY vocal today...tonight she has a case of the crazy laughs that's about to drive us nuts! She and her brother were going back and forth, he'd squeal/scream, then she'd do it! It's been a noisy night! Hopefully we can get her to wind down a little so she can get a decent night's rest! Now if only her brother would do the same...

Thursday, June 28, 2012

Good day

Reagan had another good day today. She slept well last night and woke up just before 7am (of course...because we had a night nurse). She was smiley this morning and she's been smiley all day long! She did have one isolated throw up this morning but other than that, she's been good. She had OT, school, and PT today and was great for all of them! Very vocal...making lots of happy noises...lots of squeals! This afternoon we went in to get her casted for new AFOs. Hopefully these fit her better than her current ones (which really seemed to be hurting her the last time she wore them). Her new nurse has been very diligent about stretching her lately, so much so even her PT noticed a difference! Hopefully we can make some progress with those short heel chords...poor girl! She has the most pointed toes in town!! Hopefully she gets another good night's sleep tonight!

Wednesday, June 27, 2012

Sweet girl

Reagan slept well again last night. She woke with smiles and she's been a sweet smiley girl all day. She was a little groggy this morning (you would think she had gotten enough sleep yesterday). She took a 1.5hr nap and woke up just in time for Speech therapy. She was awake, but her heart wasn't in it. She was still very groggy and not even that interested in eating. She did finally wake back up and was awake for the rest of the day. She's been in a good mood...a little spunky at times (screaming out in a happy voice that still scares the you-know-what out of her brother)! Tonight I had her in the kitchen with me while I was cooking. She was sitting in her brown chair and I literally turned away from her for one second and heard...plop! She fell right out of her chair! It wasn't a very loud plop and she never made a peep, so I think she must have been leaning so far out that she only had a tiny distance to travel to the floor! Either way you look at it, this girl is not allowed in her chair without the straps on anymore!!! Even if she's not leaning out, even if she's completely still...you just can't trust her!!! She was fine though...I was a lot more freaked out than she was. What am I going to do with this girl?!?! Speaking of...what am I going to do with her brother?!?! I've given up on the Nexium...he doesn't like it and it's just too much volume to give a breastfed baby (10mls)!! I'm not sure what our options are at this point. Right now I'm leaning toward going back on Prevacid and trying to get him to eat cereal again. We'll see how that goes! He's just such a fussy baby and restless sleeper...I was supposed to get an EASY baby this time around!!!

Tuesday, June 26, 2012

Sweet dreams

Reagan slept all night last night and then slept in today til 2pm!!! That girl really needed her sleep!! She was sleeping pretty soundly but we did wake her up a couple of times (once when we changed her diaper and once when Grandma was leaving) and each time she woke, she was fussing and not happy at all!! I think it was just because she wasn't ready to get up yet, because when she woke up at 2, she fussed for a couple seconds and then she was fine. Smiles and all (although I have to admit, I was a little worried). She's been a good girl while awake...sleepy at times...but sweet and smiley. She fell back asleep around 5.45pm and has been sleeping ever since! I guess this was her recovery day! Hopefully she'll be awake and happy tomorrow!! Sweet dreams princess!

Monday, June 25, 2012

Crazy laughs

Reagan didn't sleep much at all last night. Mike woke up around 2:30am and saw that she was wide awake, kicking around in her bed. Then I got up at 3:30am and covered her back up...she was quiet but she not looking sleepy in the least. I got up around 7:30am with Ryan and Reagan was still wide awake! Despite not sleeping much last night, she's been happy and smiley, so I'm definitely happy about that (I just wish for her sake, she could get some rest)!! Her temperature regulation was a little off again today. Very cold feet and hands. She also was a little too easily excited...the kind of laughing that sometimes turns into crying (you have to be careful with that). She had speech today and ate some bananas/mixed berries. She seemed to enjoy it. I always remember her liking bananas, I think because they are so sweet!! This afternoon she went swimming again with Grandma. Grandma bought her a swimming cap with little flowers all over it!! Too cute! Tonight Reagan had the crazy laughs, which just about drove us crazy!!! At least she's happy....hopefully she gets some rest tonight!!



Sunday, June 24, 2012

Feeling better

Reagan slept well last night. She woke up this morning around 9am, just minutes before Grandma got here! She was smiley and happy...finally!! Still having some chorea and a little spitty, but no nausea (thank God)! She was a good girl all day. It was a good recovery day after what she went through yesterday. Grandma even took her swimming this afternoon! She was still a little tense, but I think she enjoyed the pool! The warm water and quiet environment are good for her, I think.








Sorry for the fuzziness...(cropped cell phone pics)

Saturday, June 23, 2012

Smiles and nausea

Reagan didn't get much sleep last night. She was tired but fighting sleep. Around 1:15am she woke crying. I got up and gave her some Norco and she was asleep within minutes. She only slept for about two hours and then she was back awake and crying. Mike tried to get her back to sleep but she was kicking and squirming and crying in her bed. He picked her up and put her in her brown chair where she seemed much more content (although still not sleeping). Ryan woke around 6:30am again so I got up with both kiddos. Reagan calmed down a little and I even got some smiles and laughs out of her (crazy laughs). She has definitely been a little better today. Whiny at times, but more laughs and smiles than we've seen in quite a while. She's also been more nauseous than I've seen in a very long while. She's been very spitty and was choking here and there because of it. Then this afternoon the nausea escalated and she threw up so many times I lost count! Poor girl. I can't even imagine what it feels like to throw up that much! She was completely worn out by it! I hooked a drain up to her stomach (I can't even remember the last time I had to do that) and I drained out quite a bit of fluid. Hopefully the nausea passes quickly. Grandma is coming in tomorrow morning so we're hoping she'll finally be having good days once again!

Friday, June 22, 2012

SO Off

Reagan actually slept fairly well last night. She was a little restless, but I think she got some decent sleep. She woke up this morning with big eyes looking a little startled and very serious. She was on the verge of fussing, but I managed to keep her calm. She did have a big throw up this morning. One of those that just seems to come out of no where. I think laying in bed all night spit begins to accumulate in her tummy, and sometimes it just comes back up! She seems to be OK now. She's been very much on edge. Super damp, clammy red hands...cold legs and feet. She's just off. She's actually been off since Sunday. She was showing some signs of it last Friday and then Saturday she slept the entire day and then Sunday (and ever since) she's just been on edge. Today even more so. She's had some of the worst chorea I've seen in a very long time (where she's kicking and moving so much it almost looks like a seizure). Tonight she started to get very fussy and wasn't really calming down, but a dose of Ibuprofen seemed to help her. I'm happy that she hasn't had any of the full out screaming and crying days, but it's also frustrating to see her being SO off for so many days. Where is our happy, smiley girl?? Today we're also switching Ryan from Prevacid to Nexium, in an attempt to help his reflux and get him sleeping better again! I hope it works! Thank you for your continued prayers!!

Thursday, June 21, 2012

Still OK

Reagan fell asleep last night on her own and although she was a little restless, she seemed to be staying asleep. But then this morning she woke up crying a little after 6am (hearing her cry always sends me reeling...is this it...are the bad days here). Mike jumped up and was able to calm her down and then she was fine. Awake but fine. Her brother was also wide awake so I just got up with both of them. Ryan fell back asleep and Reagan and I got in some snuggling time before the nurse got here. Apparently mommy was holding her in the proper poop position, because before I knew it we had a leaky poopy diaper to clean up! I do think her bowel movements tend to coordinate with her bad or off days. If I had to guess, the majority of pain she deals with is probably GI pain...although I guess it could be coming from multiple sources...who knows. She ended up having another pretty good day. You could tell she was a little more on edge today...increased chorea, even more sensitive to talking and sounds, and cold/clammy hands and feet. She had vision/OT, school, and PT today and she made it through them all. Tonight she was dozing off at 9p while sitting in her chair (very unlike her). Hopefully she gets some rest tonight and has a good day tomorrow! Thank you for your prayers.

Wednesday, June 20, 2012

Still hanging in there

Reagan slept off an on last night. She woke at midnight just as Ryan and I were headed to bed. Her nurse ran in and picked her up immediately...she loves holding her...maybe a little too much! She slept off and on in her arms but she was restless. She was smiley though...so I was definitely relieved to see that this morning! She was a little groggy this morning but she got a second wind just in time for speech therapy. This afternoon she stood in her stander for over an hour! I think we might have pushed our luck a little though because she had a slight meltdown and we had to get her out quickly. I'm not sure if her feet were hurting her or what, but she sure didn't like us touching them. I think it's definitely time for new AFOs (we have an appt next week). Reagan's had her crazy moments here and there today (and some crazy laughs), but overall she's managed to pull out another good day. These days are certainly not as good as her usual good days (she's more tense and on edge), but they are better than bad days (where she cries all day and seems to be in pain)...so we'll take it! I'm hoping she'll get through this without any real bad days and hopefully we'll see some 100% good days soon! Thank you for your continued prayers!!

Tuesday, June 19, 2012

Minor meltdowns

So today has been an interesting day! Reagan slept a little last night. She did wake crying at one point, but Mike was able to lay down with her and get her to go back to sleep. We kept looking at the monitor, sometimes she'd be moving around and sometimes she'd be completely still. This morning she was all smiley when we got her out of bed. She was good most of the morning. Easily excitable and on edge, but OK. OT came at 10:30 to work with her and she made it through that OK. Then a little before noon she seemed agitated so we went ahead and canceled school. She did have one meltdown and started crying (the velcro from her AFOs set her off)...but I gave her a dose of Lortab and that seemed to take the edge off. She didn't fall asleep, but she calmed down. Again, I'm not sure if she's just having mild bad days or if the bad is seeping into her good days!?!? I sure don't want that to be the case. We've been so lucky to have "100% good" good days...I don't like the idea of the bad invading her good days. We'll see. I guess only time will tell. Continued prayers for our girl are appreciated!!

Monday, June 18, 2012

Hanging in there

Reagan slept last night (as far as we know). She woke up OK...but was a little on edge. She was very sensitive and didn't like us talking amongst ourselves (just to her). I tried to put on her glasses on and she totally freaked out and started crying...tears and all!!! I managed to calm her down, but the rest of the day we just had to keep it very low key. Meanwhile...Ryan wasn't taking naps any longer than 15-20min at a time and he was very fussy! Can you say...high maintenance? Oh, what a day. On a good note...Reagan held it together and once again managed to avoid a bad day. She was still very tense most of the day, but OK. I'm not sure if she's going to skip over the bad days with just some mildly fussy days or if all of this is building up to some awful days to come. I sure hope not. Prayers for continuing good days are certainly appreciated!

Sunday, June 17, 2012

Stressed

Reagan slept well last night (despite the fact that she slept the entire day yesterday)!! She woke up this morning around 8:30am. We were definitely worried...since she did cry out at one point during her sleep! She woke calm though but you could definitely tell she was on edge. We knew we had a ticking time bomb on our hands and needed to leave soon, but we were waiting on Ryan to wake up (we woke up at 7am and then went back down for a nap around 8am). Finally we encouraged Ryan to wake up. He wasn't awake long before Reagan started up with the crying! We knew we were in trouble! I fed Ryan and Mike's mom held Reagan as Mike loaded our car. I gave Reagan a dose of Lortab and she was OUT. We jumped in the car and left ASAP. Both kids were asleep about an hour before they woke up. We knew Reagan was totally on edge so we had to keep Ryan quiet. Needless to say, we had to stop three different times just to keep him from upsetting Reagan. He started to freak out again about 15min from our house and we kept driving and somehow managed to keep him from another meltdown. Needless to say, it was a very tense, nerve wracking drive home! Reagan is still very much on edge. Lots of unhappy noises...frowny faces. Not good. Tomorrow is the first day our new respite worker will be here. Probably not a good way to start out. She has a brother that is special needs...so she's grown up with this way of life. She's going to be helping us short-term until she goes back to college. Hopefully Reagan doesn't scare her away!!

Saturday, June 16, 2012

Super sleepy

Reagan and Daddy shared a bed last night (and Mommy and Ryan shared the other bed). Reagan kicks around and moves a lot (even in her sleep) and last night was no different. So I'm not sure how much real sleep either of them got. Reagan slept in til 10:20am this morning, when we heard her yell out (and not in a good way), so Daddy went in and picked her up (even though she was already going back to sleep). She woke up and she was fine. Smiles but still a little groggy. About an hour later, she dozed back off in her chair. We put her back in bed and she continued to sleep...the ENTIRE day!!! Then she woke again around 8pm when I went in to change her diaper. She woke happy again but was only up for another hour or so before dozing off in Daddy's arms. Not sure if she just didn't get a good night's sleep or if this is her catch up sleep day (she never had one after her last bad streak). No clue what that's all about. She's never had a sleepy day so late in her good streak! We're just praying that tomorrow is still a good day (please, please, please), so we can get back to Houston without tears!!!




Picture taken yesterday of my happy girl!!

Friday, June 15, 2012

Better than expected

Reagan slept well last night. She woke smiling around 6...just in time to get some cuddling from her night nurse. Her speech therapist came early since we were going out of town. Reagan did great and even ate some pears/raspberries! I finished packing while Ryan napped. He woke up and was a little fussy, so we kept him awake til it was time to leave and thankfully he slept most of the way! Reagan was a little sleepy at first but then she woke up and just smiled the whole way there! Ryan woke up about an hour before we got there so we had to stop so I could feed him and then he fell back asleep. Reagan's temperature regulation has been completely off today. Hands & feet ice cold and clammy but she keeps sweating and soaking the back of her shirt her body is so hot! She's also really tense in her body...thankfully she's still laid back personality wise! Hopefully she hangs on and continues to have good days! Prayers are appreciated!

Thursday, June 14, 2012

Great day

Reagan had a good night's sleep last night (and managed to avoid any more bug bites). This morning the redness had faded and by this afternoon they are looking more bruise-like (which makes me think it was probably a mosquito). She's had another great day today. Very smiley, big giant eyes. I'm hoping the glasses are helping. Today she had vision therapy, summer school, & PT (and stood in her stander for over an hour)! Busy day. We took her outside to swing after vision and before school and she was trying to fall asleep on us! So we brought her back in and she woke back up in time for school. She's got a different teacher for summer school. Not a fan. He's this big monotone guy that normally teaches math and science. No personality whatsoever. Hopefully he'll loosen up or this is going to be a looong summer! He's definitely no Mrs. Rose! I'm trying to get organized today for our trip. Not easy with a clingy 18+ lb boy attached to me! Usually he'll take one or two long naps in the morning/early afternoon, but he hasn't taken one longer than an hour all day. I'm still super nervous about the 3.5hr drive!! Please keep it in your prayers that both are good for our road trip tomorrow and that Reagan hangs on and continues to have good days!!

Wednesday, June 13, 2012

Bitten

Reagan has had a good day again today. She slept well last night and woke up this morning with smiles and laughs. Of course, she also woke up with a huge string of bug bites on her neck as well!! She has three big red bites on her neck where something bit her! Poor thing! I hope this is just a one time thing, because my girl doesn't do well with bites (it usually takes a month or so for a mosquito bite to go away on her)!! What's crazy is that we just had our house sprayed about a month or so ago! Ugh. I put some steroid cream on it, so hopefully that gives her some relief. She's been a happy girl today. Very easy going...lots of laughs and smiles. She ate some prunes during speech therapy and her therapist thought she was making more eye contact with her glasses on! We're planning to go see Mike's parents this weekend in Louisiana. I'm a little nervous (VERY nervous) about traveling with both kiddos! Ryan has never even been in the car longer than 30min. I'm just hoping and praying he'll sleep the whole way there. Otherwise, we'll have no choice but to pull over! Reagan should be good. We'll be right on the edge of her good streak, but we should make it through the weekend with all good days. Please keep that in your prayers!!





Better eye contact already???

Tuesday, June 12, 2012

Laughs

No worries. Just another belated blog post! Ryan is his fussiest/high maintenance at night when I'm trying to get everything done. Often he won't go to sleep until I lay down with him, so it's usually the blog that suffers! So without further ado, Tuesday's blog post...

Reagan slept well last night. Finally. This girl needed some sleep! Maybe the swimming helped, or maybe it was just time, either way...she slept! She's been a good girl today. Definitely more herself. We've even gotten quite a few laughs! Although at times crazy laughs...it's still so nice to hear her laughing again! I've noticed something lately...watching Ryan has really opened my eyes to what a disadvantage Reagan is at not being able to see clearly. Nearly everything Ryan does or learns is from watching us! We really have no clue how well Reagan actually sees. We know she sees something, but is it just fuzzy shapes...who knows. I do know that she can't see clearly. So I decided yesterday to give it another go with her glasses. She's had countless pairs of (expensive) glasses that we never even put on her more than a day or two. I was reading another blog and the mom mentioned how it took her daughter a while to adjust to her new glasses...it was about a week until she was seeing better out of them. I don't know if we've ever given her a week to get used to her glasses. So we're going to try it (although I'm not even positive that these are still the right prescription). If I could somehow, someway give my daughter better vision...I would jump at the chance. So it's worth a try. Keep it in your prayers that it works! She could sure use something going in her favor! Off to bed...my girl fell asleep tonight even before her dose of Clonidine. Now if I could just keep her brother quiet so he doesn't wake her up!!

Monday, June 11, 2012

Calm

I don't think Reagan slept much last night. She kept moving around in her bed and this morning I found her with all of her covers kicked off. She woke calm...no smiles, but calm. She was pretty groggy all morning. She looked like she was going to fall asleep, but never did. She did have one minor meltdown when having her diaper changed, but she got some love from mommy and she was fine the rest of the day. This afternoon Grandma took her swimming in our neighbors pool. She seemed to enjoy it. Again...no smiles, but she seemed content. She was in the pool for about an hour and she didn't show any signs that she wanted to get out! We'll definitely be taking her again soon.

Sunday, June 10, 2012

Grandma to the rescue

Reagan was up off and on throughout the night. She spent the night in her chair, where she'd sleep for a little while and then wake crying. Poor thing. When she woke for good, she was still not feeling well. Very tense, very upset. Thankfully, Grandma decided to drive in (her second weekend in a row) and a little dose of Grandma seemed to help our darling girl. Grandma picked her up and held her and we saw a change in her expression. Not so much a smile, but the frown went away. She definitely seemed to be turning a corner. As the night went on she did start getting a little fussy again. We tried a dose of Lortab and it did absolutely nothing! Strange how it worked on her yesterday when she was hysterical, but then did nothing for her tonight! She didn't want to be put down, so Daddy held her and she eventually dozed off and we put her in bed. Starting to turn a corner? I hope!

Saturday, June 9, 2012

Brutal

Reagan slept well last night from about 11:45-5:30. The clonidine did nothing and we had to give her a dose of Lortab to get her to finally fall asleep. Her pump was beeping sometime around 4am and woke me up, but not her. She was laying on the tubing, so I figured it was just kinked and after pulling it out from under her and restarting it, it didn't beep again so I figured all was fine. She started moving around and making some noises around 5:30ish. She didn't actually start crying til after 6am. We tried another dose of Lortab, but it didn't work as well. It took her over an hour before she finally settled down and fell asleep. When I was giving her her medicine this morning I noticed her formula was still really full (usually her bag is almost empty in the morning). I looked at the pump and it said it had only been running for about 4.5hrs (of the 9 she was connected). I have no clue what happened. It had to have something to do with the beeping at 4:30, but I still haven't figured it out. Hopefully it didn't beep for 4 hrs straight!!! At least we got some sleep, because today has been brutal. Reagan is all tensed up and crying non-stop, pulling at her hair, and kicking and flailing...it's been an awful day. Her face is all red and flushed, she's extremely sweaty, she's so rigid, you can hardly get her to bend at all. The only time she gets any relief is after a dose of Lortab or Norco and then she's able to sleep for a while, but even that is only a short fix and she wakes up crying once more (usually an hour or so before we can give her another dose). I've spent most of my time in the spare bedroom with Ryan (who has been a handful), while Mike and Reagan were in the living room. If Reagan's asleep, it never fails that Ryan will make a noise or start crying and wake her up. If Reagan is awake, Ryan gets upset by the crying. It's a no win situation. These days are so hard. Physically and emotionally exhausting. On ALL of us. I really hate this disease. Please keep it in your prayers that she gets over this quickly!

Friday, June 8, 2012

On the verge...

Reagan woke up this morning at 6:30am crying. Mike went in there and was able to get her to go back to sleep and I gave her a dose of Lortab just to be proactive. She slept in til around 9:45 when she woke up fussing and stressed but not crying. I was pleasantly surprised, because I fully believed that this was going to be a bad day. I picked her up and brought her into the living room and just held her for a while. She was easily excitable and very tense and on edge, but she was OK. You have to be very careful with her when she's like this. She can easily go from crazy laughs to full blown crying. Thankfully she held it together and was actually slightly more calm while her speech therapist was here. Afterward she had OT and she made it through that as well. She didn't do well with anything that was too noisy or animated, so movies and toys were out. Books were a success though and she seemed to enjoy them. It wasn't until bedtime that things escalated. She went from being on edge to full on miserable! The clonidine didn't even touch her but she did finally go to sleep with the help of some Lortab. Please keep our girl in your prayers...it's going to be a looooong weekend!!!
Will post tomorrow! Pray for our girl...the bad days have begun.

Thursday, June 7, 2012

A little on edge

Reagan was up a lot last night. I think she probably slept for an hour or two, but for the most part, she was awake and squirming around in her bed. Every now and then I'd hear her say something...so I don't think there was much sleeping going on. She's been in a good mood today. A little on edge at times...definitely lots of crazy laughs and clammy hands and feet...but still good. She had PT this morning and we put her in her stander afterward. She was great for an entire hour and then right before we were about to take her out, she started fussing and sounded like she might start crying. We got her out immediately and she was fine. Then this afternoon we needed to take her in to get her blood (and ours) drawn for a study that our friend is doing. He's sequencing all of our genomes in an attempt to find Reagan's mutation that causes her mito. I'm hoping he'll finally be the one to find it! I put Ryan down for a nap (leaving our niece here with Ryan...no nurse...more on that later) and then Reagan and I ran to the doctors office with Mike to get our blood drawn. They only got half a tube from Reagan (and we needed two full tubes), so they stuck her twice and got another half. While we were there she lost her other bottom tooth. I had put a sock on her hand to keep her hand out of her hair and I think she yanked it loose with the sock! Mike saw some blood on her shirt and then saw the wiggly tooth in her mouth. He messed with it and it came out. Such a big girl! She's already lost both of her bottom teeth!! Ryan woke up while we were gone but cried the entire time he was awake (about 20min ). I got home and he was still hysterical. He was relieved to see me but it took him a really long time to recover. He kept gasping and fussing, gasping and fussing. He also did that thing Mike saw. I can see why Mike was worried...it definitely looks just like a seizure. I know his EEG was good, so I'm standing in faith that it's not seizure related. But I don't like it at all!! I spoke to the pediatrician. She thinks it's reflux related! I'm not surprised as his reflux seems particularly bad lately. He's constantly making these horrible faces and gagging. She wants us to try giving him Zantac during the day and then continuing with the Prevacid at night. Ugh. I hate giving him meds too. But we definitely need to get this reflux issue under control! And with him getting so crazy when he cries...I feel like I can't go anywhere without him now!! A very stressful situation. Speaking of stressful situations...our nurse is out indefinitely. She's going to have neck/back surgery next week because of all the pain she's been dealing with. Please pray that they are able to fix it and that she's able to come back to work at some point...for her sake AND ours!!! Meanwhile we're going to use some of our respite hours and hire a respite worker and our nursing agency is sending out a new nurse to work a couple of days. So hopefully we'll have someone here each day! And by using some of the respite hours, we free up some nursing hours...so we may be able to get additional nights. Now we just have to find a night nurse we trust!! Prayers for that too! And prayers that our girl can hold out and have another good day (and hopefully get some sleep tonight)!!!

Wednesday, June 6, 2012

A little off, but still good

Reagan slept most of the night last night. She woke up once around 1am. Her night nurse picked her up and loved on her and she fell right back to sleep and was back in bed til 1:30am. She slept til 7:15am and then woke with a smile on her face. She's been a good girl again today. She's still having some temperature regulation issues, bad day smell, & a little crazy at times but she's happy. Crunching in half a lot...making it difficult to hold her. Hands constantly up in her hair driving us crazy! Definitely some signs of things being a little off, but overall she's had a good day (although I am a little worried about tomorrow). She had speech today and was really enjoying licking on her lollipop! Her therapist said she kept grabbing her hand and pulling it closer, like she wanted the whole lollipop in her mouth! She's a turkey! She also spent some an hour in her stander. She's so good. I remember the days when we had to fight her and she'd cry the whole time she was in there! Thankfully, not anymore! On her good days...she's as good as can be (problem is, her bad days). Please keep it in your prayers that she can pull out some more good days...it's too soon for bad days!

Tuesday, June 5, 2012

Sweet girl

Reagan slept all night last night and then slept in this morning as well! She didn't wake up until noon today!! She woke happy though, so that's all that counts. She's been a sweet girl today and a little more smiley. Grandma stayed an extra day...so she was probably pretty happy about that. We had to cancel OT this morning because Reagan was still asleep, so she only had one therapy today, PT. She did well for that and then stood in her stander for over an hour. She's been a good girl....but constantly chewing on her hand (or putting it in her hair)...yesterday she was chewing on it so much I was afraid she was going to hurt herself!! Tonight we have a night nurse, but I'm pretty sure Reagan's going to sleep!! Oh well. Ryan is still a trouble maker. We tried giving him some rice cereal this afternoon...he was not a fan! His reflux is just so bad, we were hoping if we could get him to eat cereal, it would help keep his milk down. Problem is, he kept spitting the cereal out! I'm not sure how much (if any) he even kept down. This is the first food we've tried with him. I wanted to wait a little longer before giving him anything, but I was hoping introducing cereal might help his reflux and help allow him to sleep better. I guess we'll just have to keep trying.

Monday, June 4, 2012

Still calm and collected

Reagan slept well last night and then woke up this moring in a good mood. Again, not really smiley, but calm and content. We'll take it. She's been very laid back all day today. She only had one therapy today...speech. Her therapist fed her some applesauce/mixed fruit and she ate it right up! I guess I need to make more of a point to feeding her more often...even if it just for the taste of it! A few things have been a little off...like her temperature regulation and she's got the "bad day smell"...but she's been a little out of whack lately (having bad day symptoms on good days but not on bad days). History says we should have good days at least through the rest of this week, so I'm not going to worry about it. Here's to more good days!

Sunday, June 3, 2012

Calm & Quiet

Reagan had a good day today. She woke up smiling and was very happy to see her grandma! She was actually quite smiley in the morning...then she started getting very still and sleepy. She took a nice long nap with Grandma and then woke up this afternoon a little more serious. Still very content, just not smiley anymore! Our block was having a little pot luck get together, so we took Reagan down there for a little while (Daddy stayed home with Ryan, who was cranky and taking a nap). She was a doll the whole time. Very quiet and still, but oh so precious! Ryan, on the other hand, has a tendency to get fussy/hyperactive the later it gets. That makes it very difficult for me to do the things I need to do at night (Reagan's meds, formula, blog, shower, etc...)! He's quite the handful!


Very calm, quiet girl
 


Don't let the smile fool you, he's trouble!

Saturday, June 2, 2012

Great day

Reagan has had a great day today! She was awake when I went in to get her this morning, but she was very quiet and still, so no telling how long she had been awake. To the best of our knowledge, she slept well last night. And she's been a precious girl today. So sweet, so snuggly. She's been great all day. Very low maintenance. Giving us lots of laughs! Talk about food for the soul! She is an angel...there's no doubt about it! Boy do we love this girl!!! Tonight she's starting to look a little groggy. Lots of yawns. Hoping she gets a good night's sleep tonight and wakes with smiles tomorrow for Grandma!
(I'll definitely post some pics tomorrow!)

Friday, June 1, 2012

Feeling better

Reagan is feeling better!!! She slept some last night...from about 11-4am and then off and on after that. The best part about it is that she woke feeling much better! She was calm and content. She wasn't that smiley in the morning but as the day went on we got more and more smiles! Tonight we even got some laughs!!! What a relief to be done with those bad days! I don't know know if it was the fact that this bad streak went 3 days instead of 2 or what, but it really kicked our butts this time (and hers I'm sure)!! Looking forward to a relaxing, happy weekend with our girl and a nice visit with Grandma (which I'm sure Reagan will be very excited about)!!!