Tuesday, May 16, 2017

Sleeping and holding

Reagan slept well last night and then just kept sleeping today...the ENTIRE day! Her nurse finally moved her out of bed this morning to help her pee (she's holding) but she never even attempted to wake up! She just been snoozing the day away! She must need it though. She did finally wake up at 9pm tonight. She was sweet and content but still very yawny and she only stayed awake about an hour or so before falling right back to sleep. Sweet girl. She never peed on her own today, only with the help of warm water, but at least we didn't have to cath her. It's strange to see her holding on a day when she's so relaxed (and sleeping) all day. Not sure what causes her to hold the way she does, but just glad she went without having to be cathed! Hoping for a happy awake girl tomorrow!

Monday, May 15, 2017

Calm Monday

Reagan was very laid back and calm today. She had speech this morning and did OK with that. She did respond to a question on what she wanted to work on, but overall wasn't super interactive. Just very serious and quiet today. She was a little spitty this afternoon/tonight and kept trying to put her hand down her throat resulting in her choking herself. She settled down a little tonight and was so sweet and snuggly, I just wanted to eat her right up!! She eventually dozed off on my lap. Sweet girl.

Sunday, May 14, 2017

Happy Mother's Day

It's been a nice laid back mother's day. Ryan was back in our bed last night, so that was not ideal. Reagan slept well and woke up happy today. She's been a little sensitive in her eyes today, but otherwise good. Mike cooked breakfast and then cleaned the kitchen (best present ever). Then this afternoon Mike and Ryan put together my new grill (Mike does all of the grilling, but I'm the one that likes to eat it) and then they went swimming. Reagan and I sat outside and watched them. It was a little warmer today, so we didn't last long. My girl was getting flushed and I was hot myself. All in all, everyone had a great day. Hanging out with the fam, what more could I ask for! Great day!

Saturday, May 13, 2017

Swimming Saturday

Guess who ended up in our bed again last night? Ryan! What the heck? This sleeping in mom/dad's bed is for the birds! Ever since he got sick he's been pulling that. Not sure how to break that bad habit. Reagan slept well but was up and vocal by 7:30am. She was happy, so that was great. She's been a lot more laid back today. Always trying to escape from that restraint. Sweet girl! I can't believe she's had to wear it the entire week. Her finger is finally healing, but she definitely did a number on it. Hopefully another day or so and we can turn her loose. I just don't want her re-injuring it right now while the skin is still thin. Ryan got a much needed haircut this morning and then went swimming this afternoon with Grandpa. Reagan and I sat outside and watched them. The pool is warming up but is not quite warm enough for my girl just yet. It's still very cold when you first get in, although Ryan doesn't seem to care. He's been in it every single day. He's quite the fish.

Friday, May 12, 2017

Vocal and tense

Reagan was very tense/vocal today. She had a dental appt this morning and we weren't sure if we were going to make it there without tears. She was very vocal, I think because she's still demanding constant attention (like she was last night). We made it there in once piece and got her out and into the office. She was actually very well behaved the whole time we were there. She did fine for the dental exam, got a little annoyed with the dentist's singing (she sang twinkle twinkle as she counted her teeth), but she was fine. On the ride home her nurse sat in the back with her and she seemed a lot more calm. She actually fell asleep before we got home, but woke up as soon as I carried her upstairs. No therapies today. No school. Which was fine since she was still very vocal and on edge the rest of the afternoon. Very whiney/fussy, but no actual tears. Demanding attention. She did not want to sit in her tomato chair at all today. Definitely preferred the mat. Tense but never actually going over the edge. She seemed to calm down a little tonight...hoping for a good weekend for my girl!

Thursday, May 11, 2017

Darling girl

Reagan has been super darling today. She dozed off before PT, but woke up just before she got here and ended up having a pretty good session. No OT today as her therapist thinks she's coming down with something! We've had a few people out this week with the sickies...must be something going around. This afternoon her nurse Latasha came by for a visit. She's moving back to Florida and leaves tomorrow so she wanted to come by and see Reagan before leaving. Reagan was in a darling mood and very happy to see her!! Reagan has been quite the sweetie today, but she did doze off again just in time for school. She slept until 5pm or so and has been awake and adorable the rest of the night. A little vocal...demanding our attention...but that's OK. This girl, she gets what she wants!

Wednesday, May 10, 2017

Cardiology follow up

Reagan had her cardiology appointment first thing this morning. Not a huge fan of early morning doctors appts, getting stuck in traffic, having to figure out a way for her brother to get to school, having to do meds in the car, etc...but this was a followup appt after the irregular EKG in Houston, so we took what we could get. They first did an EKG and then an echo. Whenever they decide to go ahead a do the echo (especially after taking longer than normal to do the EKG), it makes me a little nervous! Thankfully they both came back normal! Reagan was in a great mood today. After we got home from her appt, we went out onto the back porch for a while. It was an overcast day so it wasn't as sunny/hot as it's been lately. We pushed her in the swing and she started to doze! Sweet girl. We stayed outside until it was time for me to go get her brother, then I took her upstairs where she proceeded to snooze even more! No school for this sleepy girl today!

Tuesday, May 9, 2017

Vocal but good

Reagan was VERY restless last night. It didn't seem like she was even going to sleep, but she wiggled her way half way down her bed and then fell asleep. I had to cover her with a new blanket two times as she kept moving down her bed. At one point her pump started beeping and I found her extension had popped out. Thankfully it alarmed (no idea why), because that is the only reason I found out it had come out. I put it back in and started her back up again. I didn't feel anything wet, so I presumed that I caught it pretty quickly. Ryan also ended up in our bed at 2am, so needless to say, no one got much sleep last night! We were all dragging this morning. Reagan had a pretty good day today though. She had PT this morning and did well with that. She was practicing sitting to stand and bearing weight through her legs. I came in a watched for a while, but she waited until I left to really turn it on. Afterward she had OT. She was vocal but good. She got super sleepy just after OT and dozed off, sleeping right through her normal school time. She woke up about an hour later. She's been pretty vocal today and tonight that was starting to intensify. She was definitely starting to get more stressed. So just before 9, her nurse gave her clonidine. Eventually she was able to doze off and I moved her to bed. Hoping for a more restful night's sleep tonight!

Monday, May 8, 2017


Reagan was still a little tense this morning but she seemed OK. She had speech and was in a decent smiley mood but while working with her therapist, she took an unexpected bite into her left pointer finger. Her therapist said it sounded like a crunch and then there was blood. She got herself right on the knuckle. It's a good little cut...those front teeth are sharp. We kept her arm in a restraint the rest of the day and I guess we'll have to keep one on her until it heals. No fun. She was good the rest of the day. Pretty happy and laid back. Definitely not what you would expect of a day she bit herself. Hoping she can sleep tonight with this restraint on...

Sunday, May 7, 2017

Tense but successful run

Reagan was very restless last night. I did not have high hopes for the race today. She woke up tense but ok. We loaded everyone up and headed to the highschool. There were several teams of runners running with Ainsley's Angels at this race. No surprise, Reagan got increasingly tense as we got closer to the speakers. Thankfully we didn't have to wait long and then we were off! It was SO sunny (I'm used to running in the dark) that and the fact that we were pushing made it extra tough. Reagan was good though so we pushed on. We actually finished in pretty good time. Reagan took it easy the rest of the day. She was still pretty tense and that was evident in her holding. No pee all morning. Finally at 2pm, her nurse came over to cath her. She had been holding 14-16hrs at the point and we got 625mls of urine. That's A LOT. Poor girl. On a good note, tonight she finally went on her own. That's a relief. Hopefully no more cathing. Praying she wakes up less tense tomorrow (and peeing on her own).

Saturday, May 6, 2017

Super sensitive

Everyone slept well last night. Reagan was up by 7am, vocalizing and kicking around in bed. We brought her downstairs and her brother continued to snooze. She's been in a good mood today but very sensitive. Sensitive to light. Sensitive to noises...music, lawnmowers/weedeaters, us talking, and running water (that's a new one that was really agitating her today). She's been super crunchy. Hands in her mouth or hair at all times. So crunchy that her tomato chair really wasn't a good option today. She spent the majority of the day on the floor rolling around on her mat! She's been pretty content for the most part though. Tonight her cheeks were red and flushed but her temp was fine. Ryan and Daddy went to cousin Raine's bday party today. Ryan had a blast swimming and playing with his cousins. Reagan stayed home with me and Grandma...she would've never tolerated the noises of a kids bday party today! Hoping and praying she mellows out by tomorrow so we can still do our 5k in the morning! My allergies have been killing me all day (since last night) so hopefully I can breathe during our run. I did finally get a giant splinter out of my foot that's been bothering me all week so that should help.

Friday, May 5, 2017

A nice visit

I woke up this morning at 6am to a text from Mike (headed back home from Mexico) and then a call from the nursing agency (never a good thing). Our nurse needed to stay home with a sick kiddo. Thankfully Reagan slept well last night and woke up in a good mood this morning. No nursing and no therapies today so we just hung out with Grandma all morning. Mike got home around noon and at 1:45pm we had visitors arrive. The grandparents of one of the seven that has the same NACC1 mutation as Reagan. They are both scientists and were here in town at a conference and wanted to come by to meet us and Reagan. It was such a nice visit. They told us a bit about the mouse model they've already created with this mutation. How fortunate we are to have such great minds working on this! Reagan and their grandson are SO similar, it's crazy. I can't wait to see what they learn and hopefully we can help them out by talking to Baylor to see if we can send them Reagan's fibroblast cell line! How I'd love to be in the lab working on this! While I do miss science, I'm so lucky to have a hard working husband enabling me to stay home with my sweet girl for all these years. I wouldn't trade my time with her (and my boy) for anything. Reagan was a little groggy while they were here, but at least she was in good spirits while awake. Tonight she definitely seemed a little sensitive especially her eyes. I'm guessing it's neurological and related to the seizure she had last night. Hoping for a good weekend this weekend. We've got a 5k to run on Sunday so fingers crossed!

Thursday, May 4, 2017

A nice surprise

I'm not sure how much Reagan slept last night. I had to give her clonidine to get her to finally doze off but by the time I made it to bed, she was already moving around and making some noises. She was content though, so I was able to fall asleep. Then I woke up to Ryan. Mama! Mama! I assumed it was around 6am, so I told him he could just come to my bed. It was 2am! Ugh. This kid. Ever since he was sick (for two weeks in a row), he's been wanting to come to "mama's bed". Which is fine, if it's 6 or 7 or 8. But not 2! Reagan had a good day today. She's was a little sleepy at times (I'm guessing she didn't get a ton of sleep last night), but she was oh so precious. She had PT and OT today and did really great with both. She dozed off in between and we weren't sure if she was going to wake up in time for OT, but she did, unfortunately in tears! She thankfully settled down and was fine the rest of the day. Not sure what that was about. This afternoon we were all surprised by a visit from Grandma. We haven't seen her since the birthday party. She fell at work and has been injured ever since. Hoping she gets better soon because we sure have missed her! The kids were both super happy to see her. We had a night nurse tonight and she did tell me she saw Reagan have a small seizure at 9:50pm tonight. Head turn sharply to the left lasting 15 sec or so. Ugh. Hate seizures. No other signs of anything. Hoping that's it.

Wednesday, May 3, 2017

A better day

Reagan slept well last night. She woke up 7 in a good mood (no more nausea...a little lip smacking but no nausea). She's had a good day today. Not a lot going on. Speech this morning but that was it for therapies. Her speech therapist was excited though because Reagan put together a few sentences using her PODD. We got her back up into her stander again today. She tolerated it well and could've stayed up longer, but I had to go pick up her brother from school so we took her back down (it's really hard to get the tray off with just one person). She had a good rest of the day. Pretty laid back, but still wanting those hands in her mouth. Her nurse did her best to keep it out of her mouth as much as possible today as her hand is starting to get really red. All in all it was a good day for my sweet girl.

Tuesday, May 2, 2017

Calm and content and a bit nauseous

Reagan slept well last night and woke up calm and content. She was very relaxed all morning. She spent some time in her stander before PT and did well with that. After changing her knee supports out a few weeks ago, her knees look a lot better after standing (before they were getting SO red)! Now her feet were purple when we took her AFOs off, but that's more an issue of circulation. Maybe a hint of dysautonomia? We've also noticed some nausea today. Especially when she's laying down, but other times as well. Often times when she's lower tone like she is today, she has a problem controlling her secretions and she becomes chokey. Today she seems a little more gaggy than chokey, so not sure what that's about. She's definitely been on the serious side. She was a little more talkative this morning, and a little more quiet/serious this afternoon. It was a busy day though because after noon she had PT, OT, and school/speech! Her OT actually said despite the lower tone, Reagan was able to sit unassisted for a bit by herself. She did well during school too, and even with them having technical difficulties with her computer for a while, she was patient. She's had a pretty good day overall, better if it weren't for the nausea. Tonight she was still very calm and content (almost sleepy). She kept rubbing at her eyes (with her left hand at her right eye). Not sure if there was something in it or just a weird tick sort of thing she kept doing. I was afraid she was going to put her eye out so I eventually put an arm restraint on her but she wasn't a huge fan. Ryan was FINALLY back to school today. He seemed a little quiet and not his normal crazy self even when I picked him up from school, but he got a second wind this afternoon when I let him go swimming. The pool is really too cold to swim in, but he doesn't mind. He loves it! Hoping everyone gets a good night's sleep tonight!

Monday, May 1, 2017

New tube and sick brother

Reagan had a hard time falling asleep last night. She went a little crazy after the clonidine (a paradoxical reaction) and I eventually had to move her to her chair because she was thrashing around so much in bed. I was hoping she'd instantly fall asleep, but no such luck. I'm not sure how much, if any, she slept last night. We didn't sleep much either because Ryan woke up sick in the middle of the night. It was coming out of both ends. Poor boy. I managed to get him back in bed for a while but he ultimately ended up in our bed. It was a loooong night. Reagan seems very tired today. Sweet girl. They weren't able to squeeze us in until 10:30am this morning, so she had to go all morning without any medicines or food. It took a little longer than usual to place a new tube because usually the old tube is still in and they use that as a guide to get the new one in. Reagan was a great sport though and we eventually got it done and were headed out of there around noon (it broke exactly 5months from the day we had it put in, 5 months is definitely the breaking point for her tubes, gotta get them replaced at 4 months). Ryan was home with Grandpa since he obviously couldn't go to school after the night he had. Reagan had a good rest of the day. She had school/vision and did great with that. She was also still peeing on her own (even going without fluids for over a half a day), so we were super happy about that. Really hoping everyone sleeps tonight. We all need it!