Monday, November 30, 2015

Very still but a little sensitive

I found my girl in bed this morning completely still and quiet, but wide eyed and awake! Not sure how long she had been like that or how much (if any) she slept. She's been super calm and quiet today. Very sweet, very relaxed. Hands very still...just letting them sit in her lap most of the time. She had speech this morning and did very well with her eye gaze device. Then this afternoon she had OT and she got in some good stretching as well as some work with her ipad. There was one time during the stretching she almost broke out into tears, but she calmed down and regrouped quickly. She seemed pretty laid back but a little kooky when her teacher came. She was a little vocal, but once we started talking, the tears started flowing! Uh oh. We got her situated in her wheelchair and she eventually settled back down and was able to have a decent session with her teacher...she was just very sensitive. We definitely think her tummy is part of the problem, as she's been having a lot of gas today and she's been a little backed up. The rest of the afternoon/night we just took it easy. I kept her upstairs away from her crazy brother and she seemed to be doing a little better. She dozed off on her own laying on the floor with me, but when we moved her to her bed, she just kept opening and closing her eyes over and over again. Very sleepy, but a little restless. Hoping she can get some sleep tonight.

Here's a pic of Grandma on her birthday today decorating a tree along the road near our house! This is a big thing in Austin...especially along the 360 loop. We went shopping this weekend at Barton Creek mall and then drove by these trees and were inspired (this isn't our first year to "bomb" a tree).

Sunday, November 29, 2015

Calm and collected

Reagan slept well last night and woke up this morning very calm and collected. She's been very more hands in the mouth and rubbing her nose (thank goodness). She's had a chill sort of day today. Sleeping off and on. She took a bath with Grandma tonight. She loves taking baths with Grandma. So relaxing...she can just float in the water rather than laying on an uncomfortable bath chair! She almost fell asleep in the tub! Overall, it's just been a quiet, calm day for her. She's been very sweet and quiet. Good day.

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.

Saturday, November 21, 2015

Santa Eve

Reagan had a pretty good day today. She slept well, waking up sometime just after 8am. She's been very crunchy today and tense in her body, but still very smiley. We've got a reservation to see Santa tomorrow at the mall. We did it last year, it's called Caring Santa, and they set aside two days where they have time slots to see Santa before the mall opens (from 9-11 on a Sunday) for special needs kids. They have the music and lights lower in the mall and it's just a lot more quiet and less frantic than a normal Santa visit. There's no waiting in line, they have tables set up for kids to sit and have a snack and color. It's really a wonderful experience. I've reserved two time tomorrow and one in two weeks and I'm just hoping Reagan will be up for one of them. Last year Ryan was not too hot for Santa (see crying pic below...he's saying "all done") but Reagan was good! So we'll see how she is tomorrow. Hoping for a good day. There are definitely some signs of her being on the verge, but we'll keep our fingers crossed.

Friday, November 20, 2015

Crunchy Friday

Reagan slept well last night and woke up this morning smiley but tense. She's been super crunchy today...lots of tone...and vocal. She had speech this morning but was only awake for part of it! She ended up passing out cold in her chair!! She slept til 2:30pm waking up just in time for a make up session of PT. She tolerated it fine, but she was just SO crunchy it did interfere a bit with what they could do. The general consensus at this point is that the Botox did not work at all. She's just SO stiff! We're still doing our best to stretch her as often as possible, but it definitely does not seem to have gotten any easier. So we're back to square one. Hoping my kooky sweet girl has a good weekend!!

Thursday, November 19, 2015

Sweet sleepy girl

I'm not sure how well Reagan slept last night. I'd venture to say possibly not at all! I woke up around 4am and found her in her bed completely squirmed out of her covers! I tucked her back in and went back to sleep but I don't think she ever did. She was still super sweet and smiley though, so who can complain about that?!?! No therapies scheduled for today, so when she decided to finally doze off and catch some z's...we let her! She was still out like a light at 12:15 when we changed her and got her loaded up into the car to get her tube changed out! I honestly don't know if I've ever seen her that OUT! She was completely limp which made it a challenge finding a comfortable position for her in the car! Actually I think that's what finally woke her up! Her head would hang so far back or so far forward, and then she'd gag! Once she woke up she kept gagging herself with her fingers down her throat. It was a little strange, because she hadn't been at all nauseous otherwise. She was great for the tube change. We had to wait for a bit in the office (we always do) then we had to wait again for a while for the doctor with her laid out of the table and she was such a trooper! The tube change went super smoothly although the doctor did note that she's still using a tube that would be appropriate for a 1.5yr next time we are going to increase the length of her gj tube (from 22 to 30cm). She also said that it's good to vary the length from time to time so you don't always have that tube resting in her intestine at exactly the same spot (giving a chance of erosion). All good things to one has ever mentioned any of this to us (changing it out 3-4 times a year you'd think someone else would pick up on this)! Anyway, Reagan stayed awake through the whole procedure and our drive home. Her teacher then came and worked with her for an hour but she was starting to get a bit more sleepy at this point and wasn't super interactive. Then shortly after her teacher left, she fell back asleep and slept til 11pm! She woke up when I changed her diaper to move her to bed and she was all smiles! Such a sweet girl! Hoping she can sleep tonight after sleeping so much of the day away!

This is her old tube...its yellowed over time but the black is not gunk but a tracer they use to see it on the xray (the balloon is deflated to remove it)! 

Wednesday, November 18, 2015

So sweet

Reagan woke up this morning around 5:45am. She was sweet and smiley, so I changed her and put her in her therapy room to watch cartoons (while I went back to sleep for a bit). I'm pretty sure she never went back to sleep. She has been super precious all day today. I mean, sooooooooo sweet! Very calm and still. A little loosey goosey for therapy. She had speech first and had a case of the giggles. Sweet giggles, not crazy laughs, but it was a little hard to get her to concentrate! She was hanging her head a bit too but that miraculously stopped the second her therapist started packing up. She's a stinker!! During OT it was hard to get her to do much of anything because she didn't have much trunk or head control, but she did get some really good stretches in. Then this afternoon she had school/speech and she did really well! She wanted her hands together or in her mouth so it wasn't a great fine motor day, but she was a rockstar with her eyegaze computer! It was a super busy day of therapy and she did really well with everything. She's been a bit spitty today but again we think that's probably related to her decreased muscle tone throughout. She's just been so laid back and cuddly! I'm loving it! She really couldn't have been more precious today! Great day!!

Tuesday, November 17, 2015

Crummy morning but better night

Reagan woke up a few times last night crying. I woke up to fussing around 12:30am but she was back asleep by the time I got in there. She woke back up around 2:30am and this time she was really crying. Thankfully some medicine did the trick and she eventually fell back to sleep. She was on edge like this the rest of the morning. Still hating diaper changes. There was a lot of crying and sleeping.  We did cancel all therapies today (and yesterday). This afternoon she seemed to turn a corner and the tears stopped and she's been pretty stable ever since. She's even giving us some laughs. Tonight I kept her upstairs away from her sickie brother. She's not looking very sleepy but we are, so I'm really hoping she'll doze off soon!

Monday, November 16, 2015

From Serious to Miserable to Tense

Reagan slept well but woke up a bit on the serious side. She was OK all morning, but around 12:15pm the tears started up. She wasn't responding well to medication, but eventually she did calm down and doze off for a bit. She was off and on like that the rest of the day. When she'd cry, it was nonstop and such a sad, miserable cry! Grandma helped with a bath and I think that was relaxing for Reagan because she almost fell asleep in the tub! She did finally calm down and have a decent night tonight, but she's still very much on edge. Every time I lay her down to change her diaper she freaks out and starts crying again! Thankfully she has been fairly easy to console (unlike earlier today). Really hoping she can sleep tonight!!

Here's Ryan's school picture! It may be the best school picture he ever takes!
We owe his teachers big time!!

Sunday, November 15, 2015

Super sweet and cuddly

Reagan slept well last night...Ryan not so much. He woke up around 4:45am crying. I went in and tried to get him back to sleep, but it wasn't working. I ended up just bringing him into our bed and crashing. Reagan slept in til 8ish and woke up a sweet girl. She was a bit more serious first thing but quickly loosened up and has had a wonderful day today. She's been vocal (talky) and super sweet. No nurse today so we got a lot of one on one time with this sweet girl. She's been very still and cuddly! I just love holding her when she's like this! I got in a lot of snuggles today! I held her on my lap this afternoon and we both took a nice little nap. She's been pretty nasally/congested today...I'm just hoping she's not catching any of the gunk her brother has been hacking up for the last couple weeks! The doctor said that if he's got a cold, that cough could go on for 3+weeks! Ugh. Tonight he was laying right on top of much for not exposing her! She's spent a lot of time on the floor tonight...not because she's sweating or having temperature dysregulation (although her feet are cold...her back is not sweaty) but because she's just very crunchy and her tummy is a bit distended and she seems to get more gas out when she's rolling around (opposed to sitting in her chair). Hoping she continues to have good days. Tomorrow is her Monday nurse's last day and Grandma is leaving tomorrow as well!

Saturday, November 14, 2015

Birthday football game

Reagan slept well last night not waking up until right around 8am. She woke up pretty serious but OK. She definitely loosened up as the day went on. This morning I noticed a questionable event where she started fluttering her eyes and then sat fixed with her head turned to the left and her eyes looking down. She broke out of it after 30seconds or so, but I hate to see anything questionable like that. Grandma drove in this morning and my girl was already less serious and more alert when she saw her. Reagan took a little cat nap this morning and then again this afternoon, but she was awake most of the day. We had two nurses today, one for the morning and one for tonight and Grandma had Ryan duty so could drive to College Station (2hrs away) for the Texas A&M football game (my birthday present to Mike...even though today is my actual birthday)! Both kiddos behaved themselves and we were able to get away for the afternoon and do something alone! Actually we met up with Mike's best friend and his family at the game, which was a complete surprise to Mike...I'm so glad we were able to pull that off! It was a good game and we all stayed dry and fairly warm! Reagan and Ryan were both very well behaved while we were gone. We made the drive back and both kiddos were already in bed! Very nice. Time for us to crash. It's been a good birthday. 

Friday, November 13, 2015

Not bad

I'm Reagan had a surprisingly decent day today. I wouldn't say she was happy, but she was tolerant. She missed a make up session of OT this morning because she had dozed back off, but woke up in time for speech and PT. PT was even able to get her up into her stander! She did take several naps today but she didn't require any pain meds, so that was an improvement over yesterday. She's definitely better today than last night, although she's still a bit sensitive. Hoping somehow she can continue this upward trend as we have a lot going on this weekend (specifically tomorrow). We definitely seem to be headed in the right direction, but you just never know with this girl!!
Ryan begged to go to the aquarium today and since he was finally good at school today I complied!