Saturday, November 28, 2015

Rudolph the red-nosed Reagan

Reagan slept well last night and woke up this morning still a little tense but calm. She was really into her hands today...and not in a good way. Her hands were in her mouth nonstop and as a result she kept rubbing her nose with them. This led to the dreaded red rudolph nose! Poor thing! We kept trying to take her hands away from her by putting them under a weighted blanket etc...but that just aggravated her more. It was a no win situation. Grandma drove in today, she braved the torrential rains to spend her birthday weekend with us! Thank goodness, because Mike drove to Louisiana this morning to go to the LSU/A&M game tonight with his dad, so I would've been flying solo otherwise. Both kiddos behaved themselves though and we all had a good day/night. Hoping they cooperate in the sleep department as I need to get up and run in the morning!!

Friday, November 27, 2015

Tense but OK

Reagan slept well last night and woke up this morning a little tense but OK. She's had hiccups multiple times today they and really seem to be annoying her. I'm not sure if it's due to reflux or stress or what, but they sometimes last for up to an hour at a time! Poor thing! She's still very tense in her body. Her PT was the only therapist to come today and it was not a good session. Reagan just seemed very on edge/agitated and only lasted a short while in her stander. She slept off and on again today. We brought her downstairs tonight and put her in front of the Christmas tree where she promptly fell asleep! Her new glasses came in today so I tried them on her while she was out of it/asleep so she wouldn't grab them! They definitely need to be adjusted around her ears to help them fit tighter, but I think that's something we can have done at any eye glass place. I'm really hoping they might help her to see a little better, but when I put them on her today, I didn't get a good read either way (but she has been pretty sleepy).

Purple, more rounded

Black and more square

Thursday, November 26, 2015

Sleepy Thanksgiving

Reagan SLEPT last night!! Thank goodness, I was really worried with how spitty she was last night. Not only did she sleep the whole night through...she just kept sleeping today! We got up, I started giving medicines and we got everything together and loaded into the car. Then around 10am I went in and changed her diaper and clothes and she never moved a muscle! She was OUT. We put her in her harness and loaded her into the car and she stayed OUT! Mike's sister just moved about an hour away from us and 3 out of 4 sisters and his parents were all going to be there for Thanksgiving. Both kids were good in the car...Reagan slept the whole way and Ryan dozed off for a bit too. I did notice a really strong smell coming from Reagan's diaper about halfway there so I was worried we might have a blow out on our hands! As soon as we got to his sister's house, it started raining and then we had the task of getting the kids and all of the stuff into the house. Reagan slept the whole time and thankfully didn't have a blow out, just a huge stinky pee diaper! Not sure what that's about but we noticed it a bit yesterday and then again today...the return of the stinky pees. I've also noticed the last day or so her breath has had a weird smell to it. Almost like a bad day smell. Again, not sure what that's about. Reagan just continued sleeping and Ryan had fun playing with his cousins and we all ate too much! Reagan did finally wake up late in the afternoon, but she wasn't happy. Very serious, she had a permanent scowl on her face! She did well though with all of the noise and didn't fall back asleep until we were driving home. She slept the whole way home and then we just took her straight to her bed. Definitely a sleepy day. Even her brother, who has been fighting us going to sleep all week, went down pretty easily. Hoping they both sleep tonight!!

Wednesday, November 25, 2015

Super spitty

Reagan didn't sleep much last night. We were able to get her to sleep in her bed with the help of clonidine, but it didn't last. Around 2am or so I heard her moving around and making some choking noises, so I transferred her to her chair. I tried giving her oxycodone with hopes that maybe she'd fall back asleep, but I don't think that ever happened. She has definitely been less gaggy today, but still having lots of spit! She only had one therapy today, speech, but she did exceptionally well with that. She was very responsive with her eye gaze computer today, even selecting things out of the top right box, which is usually the hardest for her to select. She was very calm and content again today. Slightly more sensitive to talking this morning (started crying once), but that seemed to lessen as the day went on. We oriented a new potential nurse this morning (one we actually liked a lot) only to find out we live too far away for her! Things you'd think they would run by her BEFORE sending her out!! Ugh. Just yet another huge disappointment from our nursing agency and big waste of time (and hope) for us! Reagan had a good rest of the day, no more therapies, so she just took it easy. Tonight the spittiness increased exponentially and she was choking on it a lot, not really gagging per se, but choking. It was A LOT of spit. Even though we had slowly added back formula to her pedialyte today, I decided to just switch her back to 100% pedialyte for the night. I'm REALLY hoping she can fall asleep and stay asleep tonight! Poor thing! Hoping she wakes up feeling better and has a good Thanksgiving. 

Tuesday, November 24, 2015

Fun morning

Today was a busy day...but good. Reagan woke up definitely feeling better. Whew! Very calm. Not super smiley, but content. Ryan had a really good session of speech therapy this morning and then we ran by the Aquarium for a quick visit to celebrate (it's right across the street from his therapy place). Then we came home and loaded Reagan up in the car and headed into downtown to see the Architects of Air Pentalum exhibit at the Long Center. I saw this online and immediately knew we HAD to take Reagan to see it! It's a maze of 5 hand sewn luminariums that you walk through (almost like walking through a huge beautifully constructed bouncy house). The light that shines through it is so bright, but there are no lights, only the sunlight that filters in through the panels! It was really neat! We got there just as it was opening and a huge line had already formed all the way down the sidewalk to the road! Thankfully I had called ahead and explained to them Reagan's situation and was told that we could take her through the fast pass line for season ticket that seriously saved us HOURS! Reagan wasn't super responsive today (because she was so laid back), but I definitely think she enjoyed it. Ryan clearly enjoyed himself! I'm so glad we were able to get out and do this today because tomorrow there's a good chance of rain (as well as every other day this week) and it is only running through the end of the week! We finished up with plenty of time to get Reagan back home for her back to back OT and PT sessions. OT worked more on fine motor today, since she had PT right afterward.  She actually did really well with both. It was a good day. She was a little spitty today, but we just figured it was probably related to her low tone, but then tonight it turned into full blown nausea. Lots of spit, lots of gagging. I made the decision to go ahead and switch her over to pedilayte. Please keep her in your prayers. I can't stand seeing her struggle with this!!

Monday, November 23, 2015

Still tense but way better

Today was an OK day for Reagan. She was still tense and very crunchy, but no more crying! She had speech this morning but she was a bit sleepy and dozed off toward the end of it. She actually had a bit of a sleepy day. Sleeping off and on throughout the day. She was actually still asleep when OT got her here but I told her to go ahead and come because my girl really needed some stretching! She did wake up, so they worked on relaxation and stretching. She almost started crying at one point, but quickly recovered. That's actually happened a couple times today where she would almost be in tears but then we'd change gears and she'd snap out of it. Definitely still very much on edge, but way better than the painful cries of yesterday. Hoping for an actual good day tomorrow. There's something fun I really want to try to get out and do with her!

Sunday, November 22, 2015

Santa success, but bad afternoon

Reagan slept well last night and woke up this morning in good spirits. A little less smiley, a little more tense, but still OK. We decided to go ahead and get everyone dressed and head over to see Santa. We got there right at 10 and it was pretty empty, we were told that we were the next to go. We took a few minutes to get Reagan's hair pulled back and shoes on and then it was go time! Reagan was a bit crunchy and into her hair, but we were able to position her on Santa where her busy arm was around Santa (poor old man seemed a little apprehensive and worried he wouldn't be able to hold onto her). Then it was brothers turn. He was trying to ignore us and looking at the ornaments on the tree, so we scooped him up and put him in Santa's lap. He did not want to look at Santa. We had to work hard to finally get him to turn his head forward!! We did eventually get a couple good pics so I'm glad we decided to come. Not long after getting home Reagan erupted into tears! It was totally unexpected as she had been so good for Santa! The rest of the day was filled with tears, medication to try to make her comfortable, and napping here and there. Poor girl. She was crying these really sad cries where she took in these loud shallow breaths, it didn't sound good. I eventually hooked her up to the pulse ox and saw that her heart rate was in the 160s (pretty typical for her crying episodes), but her O2 sats were upper 80s-low 90s, which is very unusual for her. Even once she stopped crying and her heart rate went back down to the 120s, her O2 sats stayed in the low 90s. Not sure what that was about. She did, however, seem to calm down as the night went on and tonight I even got some good snuggles and a couple laughs out of her!! Hoping this was it and she's going to be fine tomorrow! Sweet girl, I hate to see her so miserable.