Sunday, November 23, 2014

Rough day, but better tonight

So I was really expecting today to be a good day. It seems like lately Reagan only has been having one bad day and she's already better by the next day. That didn't happen today. For one, she was up a lot last night. Crying, moaning, just plain miserable. She slept a little this morning and was still asleep when the nurse got here. Unfortunately, it was our new PRN nurse's first day and she had a rough one. Thankfully, she's a good, experienced nurse and it didn't really phase her much. Reagan slept off and on all morning (with the help of medication), but then had a period this afternoon that was REALLY rough. Lots of screaming, flailing, was bad. Her nurse was definitely a little concerned. But she eventually got over it and then tonight, right as the nurse was leaving, she seemed to turn the corner. She had a little smile and just looked content. Tonight we even got some laughs out of her! Such a relief to see her feeling better. Whew! We are all going to sleep better tonight. Hoping my girl can get a good night's rest in her bed tonight! Thank you for your prayers!

Saturday, November 22, 2014

Bad days too soon

Sorry for the late posts! It's been a booger of a weekend! Here is Saturday's post...
Reagan slept last night but woke up this morning crying (I guess the stillness yesterday really was the calm before the storm)! At first, we were able to calm her a little, but she eventually escalated and then pretty much cried off and on all day long. We were in a constant rotation of Lortab/clonidine. Lortab was working a little better, but neither lasted longer than 2hrs at best. We had to restrain her off and on and her super human strength has definitely been challenging! She's asleep at the moment, but I have no clue how long that will last. Something tells me it's going to be a long one. Feeling defeated.

Friday, November 21, 2014

Busy (super calm) day

Reagan slept well last night and woke up this morning still very calm and quiet. She was very serious but did give her nurse a couple little laughs (not mommy though). She had a busy morning of therapy. A make up session of PT, immediately followed by speech, and then school/vision. After school we decided to take advantage of her laid back mood and go to the aquarium. Mike was still off from work so this was his first time to go! Ryan was a maniac running a muck and was this close from getting bitten by a Macaw! Daddy was definitely giving him more freedom than I normally would, and he was taking advantage of it! He pried off a starfish from the touch pond, had his arms all the way in the ray tank, got stuck up at the top of the play scape and refused to come down! Thankfully Daddy chased him down most of the time and Reagan got double attention from her nurse and me! Reagan was great and nothing seemed to phase her, but she also had really good head control and eyecontact and seemed to be taking it all in. Tonight she was tired, but not falling asleep. Finally she dozed off on her own around 11pm. I was amazed at how still she was tonight. Sitting with her hands laying to her side, palm up. Way too relaxed. Hoping that doesn't mean she's about to take a turn already. Hoping I'm wrong and her good days continue.

Thursday, November 20, 2014

PM&R follow up

Reagan slept well last night and woke up this morning completely calm and content. She's been very laid back today. She's looked like she wanted to fall back asleep all day but never did! She's been very loosey goosey and still. She had a busy morning with OT & PT and then we packed up and headed in for a PM&R appt. We spoke to her doctor about the xrays she had last week, all of which looked OK. She has smaller than normal hip sockets (because she doesn't bear weight through them) but her hip bone fits perfectly within the socket so there are no worries there. She also mentioned that the scholiosis screen came back with a 14% curvature, but since she can't stand and the tests were done with her laying down, they aren't really accurate, so she estimates that at the absolute worst it's 14% but it's probably less. So again, she did not seemed concerned. She also mentioned that the bone age exam (that the endocrinologist ordered) came back completely normal. The bones that they check in the hand have not fused so everything looks fine (although her hormone levels clearly showed that she was in fact already entering into puberty). We also discussed Botox (the only nonsurgical option for loosening her beyond tight heel chords), and she is going to go over her previous medical records to see what type was used in the past to see if it might be worth trying again. She looked at Reagan's AFOs and said they are still fitting properly, but she did give us an order for new arm restraints as well as knee immobilizers (so she can work on standing while not in her stander). Reagan was a trooper! Such a sweet girl. She had multiple instances of hiccups today (and little burps). We definitely think something is bothering her digestive-wise but who knows what. Tonight she dozed off while we were at Bible study and Mike easily transferred her bed when we got home. Sleep tight sweet girl.
Such a good sport, with the Dr stretching her feet and her brother acting crazy!!

Reagan's old weekend nurse filling in tonight for our other nurse! So good to see her again!! 

Wednesday, November 19, 2014

Headed home (poosplosion)

Reagan slept well last night (in bed) and woke up this morning calm and collected. She did have a big poo on her own this morning, which is quite unusual for her, but it has been days since her last so was definitely time! This morning we packed up everything and headed back to Austin. It's not a terrible drive, but lots of construction make it a little more difficult. Both kiddos were well behaved though, so that was good. Our only mishap...Reagan had another giant poo about an hour away from home! We had to make the call whether to pull over somewhere and attempt to change her on my tailgate in the cold or just wait until we got home. We chose to wait and I'm glad we did. Reagan's nurse who came in for a half day today, met us just as we were about to unload, so we had all hands on deck! It was a MESS! It had leaked through the front, it was on her pants/sleeves/carseat harness/weighted blanket, so it's a good thing we didn't attempt to pull over to change her because there was no way we could have handled that mess on the road. We took her straight to the tub and she got a much needed bath! As often times happens, it's feast or famine with her and she had another big poo diaper this afternoon as well! Oh well, I'm sure she must feel better now! She just took it easy the rest of the day. Looked a little groggy but never dozed off until tonight. Such a good girl! Glad to be home but we're going to miss Grandma!

Tuesday, November 18, 2014

ICE cold but better

Reagan slept well last night in her chair. I didn't have to give her any more medicine last night and when she woke up, she was MUCH improved. She was a little serious, but seemed very calm (and obviously no more crying). We decided to go ahead and attempt an outing, so we drove to Grapevine to the Gaylord Resort for their ICE! Frosty the Snowman exhibit. It was a little windy/cold when we first got out of the car and Reagan almost got a little too excited. Thankfully we were able to get her in quickly and in front of a fireplace to warm up. My sister met us there and we headed through the hotel's Christmas wonderland to get to the exhibit. There was some loud music playing at the beginning of the exhibit (they had Frosty the Snowman playing), so we went ahead and put her noise canceling headphones on. As we entered, they gave us all parkas to wear (we all had on big coats already) because they keep it 9 degrees inside the exhibit to keep all of the ice sculptures from melting. Ryan threw a huge fit just as we were entering the exhibit so Mike had to carry him through most of it. It was SO COLD!!! Our hands and faces were seriously frozen. I feel like we couldn't really enjoy how neat it all was because we were SO COLD!! Ryan willingly went down the ice slide and then Mike and my sister followed and then I caved and went too. It was very fast! I'm surprised that Ryan did it twice! By the end we were just all happy to get out of there!Afterwards, we had lunch in the atrium of the hotel right beside the giant gingerbread house! Reagan did great with everything! I'm so glad we were able to get out and do something today (unfortunately my mom couldn't join us as she had to work)! Reagan really turned it around today. Tomorrow we head back home!

Monday, November 17, 2014

Sleep but bad day

Well my girl FINALLY got some sleep last bed no less! She was a little restless, but she stayed asleep (I knew she was going to stay asleep because she was sleeping with her hands up over her head...she only does that when she's sleeping well). Unfortunately, all did not end well...she woke up this morning around 8am crying! We've been seeing some signs of impending bad days, cold hands/feet, increased sensitivity, & sleepless nights, but I hate to ever mention it, in hopes that she'll prove us wrong and hold out for another several good days!! That didn't happen today. Exactly one week since her last bad day, today was definitely a rough one on my girl. We kept the arm restraint on her left arm, she was very bitey, but also still swiping at her already raw face. Poor girl. It was not good. Thankfully alternating her Lortab/clonidine helped to keep her out of pain and asleep most of the day. So with Reagan miserable, we were homebound all day. Mike was able to help my mom out with some home improvement repairs (he changed out 3 lights, one ceiling fan, a thermostat, & installed a dimmer switch)! While Ryan was napping my mom and I slipped out for a little post-birthday shopping for running gear. Tonight we're leaving her in her chair in hopes that she'll stay asleep and wake up feeling loads better! Please keep her in your prayers!