Reagan slept well last night, on the floor in her therapy room, but slept nonetheless. We were too paranoid to attempt to move her after she fell asleep. Thankfully she slept all the way through. She woke up crying though, so that was not a good way to start the day. She did calm down when I picked her up, so we got her changed and I moved her to her chair. She was serious but calm and then dozed back off. She was awake and asleep off and on all day today. Both PT and school wanted to come but she was dozing when the time came for both. She definitely relaxed more as the day went on. She went from crying this morning, to fussing/moaning mid day, to just calm and content tonight. She did take care of some business and I'm sure she felt way better after that (it had been a few days)! Tonight she dozed off in front of the Christmas tree watching my favorite, National Lampoon's Christmas Vacation! Sweet girl! So glad she's feeling better! We've got plans to see Santa both Saturday AND Sunday!!!
Friday, December 1, 2017
Thursday, November 30, 2017
Reagan woke up crying this morning...it's been a rough day. Thankfully we do have a nurse (one that has only worked here once before, but a nurse) and Reagan has also been responding to her pain meds and sleeping off the bad. When she wakes up, she cries nonstop and is very bitey (she's got BOTH arm restraints on) but it usually only lasts 15-30min and then she falls back to sleep. On a good note, the nausea from yesterday is gone, but that's usually the case. I always say, her body can't do those two things at once. She's either nauseous or crying/bad day (because both together would be unimaginably bad). She hasn't been nearly as sweaty as she was the last couple of days (which is good because she's spent a lot of time in her chair), but her hands and feet are still very cold and clammy. Tonight she has dozed off a couple of times on her own, without any medication, so I'm hoping that means that she's starting to improve. My poor sweet girl. Hoping for sleep and a much better day tomorrow!
Wednesday, November 29, 2017
Reagan slept well last night and woke up this morning SOAKED in sweat. Just as hot as a little furnace...not her temperature...just her body. We took her out of bed (stripped it down), removed her soaked pjs, and immediately gave her a bath (she had a seizure right before her bath, fixing her eyes and her head to the left). We knew she'd probably just sweat herself wet again, but at least we wanted to give her a fresh start to her day. I think it helped to cool her body down a little too. She's been very tense all day. Grinding and clenching her teeth. Kicking her legs around a lot, pulling her hair, shoving her fingers down her throat and making herself gag. She's been gaggy ALL DAY. Which basically meant she had to spend the majority of her day upright in her chair. Not a good position for a hot bodied girl. Ugh. My poor sweetie. She's really only retching when she's not upright, otherwise she's just spitty and doing a lot of mouth movements. I attached her drain this afternoon and was shocked at the amount of fluid that came pouring out. And air. I've drained her tummy multiple times today and most of the time clear fluid comes out. Tonight she was having the episodes where she arches her back and extends her arms and legs out. We saw these once before and thought they were reflux related. Still not sure, we even added the Zantac today, and she still had them. Every 5min or so for 30min+. My poor girl. She goes through so much. Hoping and praying she can sleep tonight and that she wakes up more calm and nausea free.
Tuesday, November 28, 2017
Reagan slept well last night and woke up this morning SO precious. She's been super darling today. Very calm and content. Kicking around a little, but just laid back and adorable. She had a GI appt this morning with her specialist that is moving to Dubai. I'm not exactly sure what's going on with Dell right now, but it seems they are having a hard time keeping their specialists. Not good. This is another specialist we've had since moving here to Austin and another one that has always seemed to genuinely care about Reagan. This was out last appointment with him to kind of go over everything. Make sure we have refills on everything. Talk about our plan of action. He was happy that Reagan has put on a few pounds...she was 59.86lbs today...so essentially 60lbs. She's definitely felt heavier lately. She still looks very slim though, I'm pretty sure she's grown a few inches lately as well. She was great for the appointment. Cool and calm. We were in and out pretty quickly. She wasn't home long before OT came. She had an amazing session with OT. She was following directions, doing exactly as she was told...I kept hearing her therapist call her a rock star! She does love her OT though and seems to respond to her better than anyone. She had school this afternoon. It went OK. Not quite as smoothly as OT, she did let her teacher know she did not like one particular book, but she did alright. One thing we've noticed all day is that her temperature regulation is off. Her body is getting super hot and sweaty, while her feet are ice cold and clammy. This is usually a sign of dysautonomia. Something is off in her autonomic nervous system and things are getting out of whack. Not a good sign. Hoping it's nothing and the good days continue for my girl.
Monday, November 27, 2017
Reagan fell asleep last night and went down fairly easily, but she was up and vocalizing a few hours later. I don't think she got much sleep. She was still quite feisty this morning. We weren't sure what this meant for our trip to Houston this morning, but we were willing to give it a try. We were out of our house and on our way to Houston just after 7am. We made good time and arrived at Texas Children's Hospital by 10:30am this morning. Reagan did surprisingly well with the drive and the appointment itself. The only time she even got a little vocal is when a doctor (not hers) came up behind her and was loudly talking to the nurse who was taking her vitals. Reagan quickly let us know she was NOT a fan! The epileptologist we saw today was actually Reagan's doctor from years past, the one that was treating her when she became seizure free (he had moved to New York and we had moved to Austin...but he just came back)! We were actually calling Houston to make an appt with her current doctor who just switched to TX Children's when I found out that her old neuro had returned, and since Reagan's current neuro is not yet seeing patients there, we decided to see her former doctor! It was a nice visit. He's a smart guy and takes lots of time. We were there for an hour and 45min! He never seemed rushed or in a hurry to get out of there and asked lots of questions. I think it's good to see a new person every now and then just to have a new set of eyes. He made a few suggestions that are worth looking into...like checking her iron levels (can be linked to restless leg/dystonia), keeping close record of her seizures vs. menstral cycle, and even looking into supplements that might be more specific for her exact mutation. He was going to talk with her other neuro as well as her geneticist about all of these things. The plan is to follow up in 6 months but let him know sooner if we see a very clear indication of seizure activity before/after/during her cycles so that we can possibly schedule an EEG with more success in picking up those episodes. We made a follow up appt with him and I think we may keep it. While her current neuro is probably my favorite neuro she's ever had...he's just more caring and compassionate than any dr that's ever treated her...he's also taking on the role of the head of this clinic and only seeing patients a half a day a week...so his availability will be very limited and I know her previous dr will be working very closely with him so he can consult him if need be. We finally got out of there around 1pm and headed home. The drive wasn't nearly as bad as I thought it would be. I was really dreading it, but everything went very smoothly and I'm just thankful that we made it back without any mishaps. As soon as we got back, we immediately took my girl out of the car and laid her down on the floor. We figured she would be dying to roll around and get out of a chair. But she wasn't on the floor 5min and she started gagging. Big gags, as if she was actually going to throw up! I sat her up and held her and it passed. I'm fairly positive it was triggered by sinus drainage. While we were in Houston we noticed her nose was running and we even caught her blowing bubbles at one point! Thankfully, she was much better when upright so she spent most of the rest of the night in her chair. Eventually I did lay her down again to change her and she seemed OK. After that, I just rolled her onto her side, so as not to give gravity a chance to make her sick and she was fine. Mike laid down with her around midnight and while sleepy, she was not completely asleep. But by the time I went in with her formula, she was out. Really hoping she sleeps and we don't see any more of that nausea business! We've got an appt with GI tomorrow, so busy busy!
Sunday, November 26, 2017
Reagan woke up a little early this morning, but she was in good spirits. She's been good but a little kooky today. We had a new nurse working and Reagan gave her a run for her money. She wasn't bad, just a little vocal and hard to tell if she was getting upset or just kooky. I think it was just kooky because she never actually had any tears. I think it might actually be that time of the month, so maybe that's a contributing factor as well. Not sure what to expect going forward, but praying for good days for my girl. We did get out and look out some Christmas lights tonight. We've got two streets that are close by that go ALL out! Tomorrow we're supposed to go to Houston to see her new/old neuro so hopefully she's up for it!
Friday, November 24, 2017
Reagan was a little restless last night, but she had a good day today. She's been a little goofy, but good. When Mike put up the Halloween decorations last week, he took down the Christmas boxes as part of my birthday present (he loathes putting up and taking down all of my decorations). But being the Christmas lover that I am, I wanted to be ready to start Christmas the second Thanksgiving was over! So today while I took Ryan to his swim lesson, Mike put up the Christmas tree! Woohoo! Then tonight Ryan and I worked on decorating it. Ryan of course put balls only on the bottom of the tree, so I had to go back and move them once he was in bed! ;) Reagan was enjoying just looking at the lights. She did have one seizure like episode when I picked her up and held her tonight. She yelled out for a sec and then her head turned sharply to the left and her eyes were looking up and to the left. It only lasted 20sec or so, but I'm still not a fan. Ugh. What a way to ruin a good day. Hoping she sleeps well tonight and has another good day tomorrow.