Tuesday, September 16, 2014

Sweet but no sleep

Reagan did not sleep much at all last night. She went down around 11:30pm and by 12:30am she was awake, making noise, and kicking around in her bed. I got up, gave her some Lortab, and covered her back up, but I don't think she ever went back to sleep. Around 2 or 3am I heard her vocalizing a lot so I got up and found her sideways in bed once again. I decided to just put her in her chair at that point. She did seem a little more calm in her chair, but still not at all sleepy. No rest for the weary. I got up at 5:30am for my run. Reagan was still a little kooky/vocal this morning, but she mellowed out as the day went on. She's actually had a pretty good day! She had a super busy day therapy-wise. This morning she had a session of OT/PT/speech from the school, immediately followed by her private PT. Both went very well. Her PT was taking advantage of her tone and was amazed at how well she was sitting and bearing weight. Then this afternoon her private OT came and she was good for that as well. For no sleep and all of the therapy she had, she was quite the superstar today. She was also super precious and sweet. Lots of good smiles from her today and not nearly as excitable as she has been the last several days (her brother was ALL over her this morning and she didn't even seem to mind). The only negative is that she was a bit spitty. That led to coughing/choking at times and not really tolerating her bean bag chair, but she's been great otherwise. Tonight we had another battle of the clonidine though. I gave it to her and 30min later she was kicking and fighting, thrashing and biting! I held her as tightly as I could and eventually she fell asleep. Praying she stays asleep tonight. These sleepless nights are rough on her (and their not great for us either)!

Going Green for Mito Awareness Week! 

Being silly tonight...crunching in half, nearly kneeing herself in the face! 

Monday, September 15, 2014

Not too bad, but still kooky

It was an OK day today. Reagan (and Ryan) got up super early today at 6am! Reagan has been excitable from the get go. Very vocal and still a little kooky. There were definitely some times we had to lower the volume on the television or not talk because she was getting too excited! She had speech this morning but that was a bust. Just too much on a day like today. This afternoon she had OT and she was able to get a lot of stretching done, which was great, because she was very crunched up and tense all day. Lots of hand in the mouth, hands in the hair, curled up in a ball. Lots of high pitched vocalizations that sound like they are just seconds from tears. Lots of moaning. Still a little licky and sticking her tongue out a lot. We went ahead and canceled school. Definitely not a good school day. Tonight she continued to be vocal, but she held it together and had a decent night. Just wish she could relax a little! There was a bit of a freak out again after her pm dose of clonidine, but she eventually settled down and fell asleep! 

Sunday, September 14, 2014

A little kooky

This was the morning of my very first 5k. Reagan's nurse came in early and Grandma and I drove into South Austin for the "Run with the Heroes" run (honoring fallen heroes and their families from the Fire, EMS, and Police first responder agencies). It was crawling with cops...definitely the safest race ever! It was cold and started 45min late (Mike and Ryan got there before we even started), but we persevered and my running partner and I finished 9th and 10th in our age division with our fastest pace ever (30sec faster than our fastest)! We were pretty happy with that! My mom finished 1st in her age division and she got a medal, which she gave to Reagan! When we got back from the run, Reagan had dozed back off. She took a nice little nap but was awake all afternoon. She was a little goofy/kooky today. Slightly on edge, definitely sensitive. She had a big explosive poo in the morning and another tonight, so I definitely think her tummy was giving her a little trouble. Tonight I was a little sore from my run, but I had a girls night out with the ladies from my Bible study and left Mike and Grandma in charge of the kids. Ryan got a little crazy (and drove Reagan a little crazy), but they were good. Everyone survived a few hours without me. After I got home, Reagan was still excitable and wasn't really tolerating being held. She was also getting all licky and spitty, which had me a little concerned about nausea! Thankfully she fell asleep with the help of clonidine and we successfully got her to bed. Hoping for a good night's sleep tonight for everyone! 

Saturday, September 13, 2014

Super sleepy rainy day

Reagan slept well last night but woke up this morning around 7:30am with a shriek! We ran upstairs and she calmed down. I think she was just saying, "Hey! I'm awake! Someone come get me!" She was fine after that and got in some good Grandma time. She was still looking pretty sleepy though and as soon as her nurse changed her outfit and put her in her beanbag chair, she was OUT! She slept and stretched all day long, but never woke up! She finally woke up tonight right as the nurse was leaving. We brought her downstairs and she seemed to be awake...next thing we knew, she was out like a light again! Mike carried her up to her bed and she's been there ever since. Every now and then she'll make a noise or move around a bit, but she's not waking up! Definitely a sleepy day for my girl. It was a good day for it though, because it pretty much rained the entire day! A cool front came in and the high today was 66! Tomorrow is my first official 5K and the weather is going to be a little different from what I'm used to running in! It should be interesting! Wish me luck! Hoping for a good, awake day for my girl tomorrow!

Friday, September 12, 2014

Taking it easy

Reagan slept well last night. She woke up this morning around 7am content and even with a few smiles! She's been very laid back and mellow again today...but without the sensitivity. She's a lot more easy going and even her crazy brother barging into her room (and throwing the door open) didn't seem to bother her a bit! She had speech and PT this morning and did well with both. Then this afternoon she had school. She was very visually attentive, but her whole body was so relaxed, it was hard to get her to participate in school work! This afternoon and tonight we noticed that her temperature regulation was way off and her back was getting really sweaty and her hands and feet were very cold. She was a little more kicky tonight, so I let her roll around on the floor a bit. She's still got a gunky cough and runny nose though, so too much time on the floor wasn't a good idea either. I gave her clonidine around 10pm and she was falling asleep and ready for bed by 10:30. Hoping she wakes up happy and has a good day tomorrow. Grandma's in town this weekend, so I'm hoping she can enjoy it!
In the stander during PT...she doesn't look thrilled, but she didn't mind it!

Thursday, September 11, 2014

Super sensitive but still

Reagan slept last night for the most part. Around 5am she woke up and was moany and kicking around so Mike went in and laid down with her. She never fell back to sleep and around 6:45 Mike moved her into her chair and then the crying started! I gave her a dose of Lortab and that helped calm her down and she was calm but awake the rest of the morning. She did get a little stressed every time someone new would come into the room (like when her nurse first got here, or with a therapist, or me)! She did OK with therapy...she had PT & OT...everyone just had to be super careful with her (and work past a few tears). We never really figured out what was bothering her. In her body, she was very loose and still. She hardly moved her arms or legs all day. She was super sensitive, but didn't necessarily seem to be in pain (maybe it was just neurological). She started crying several times when I'd walk into the room and she did the same for Daddy. Thankfully we had her night nurse working last night until 10, so we were able to keep her content. At 10, I went in with her and finished watching Tangled with her. She didn't seem to mind me as long as I kept my mouth shut! Finally around 11, I gave her clonidine and she dozed off. She almost seemed like she wasn't going to make the transfer to her bed, she moved around and made a few noises, but finally she was out! Hoping for a good night's sleep tonight and a better (less sensitive) day tomorrow!

Reagan and her nurse Megan taking selfies! (At least she liked someone today!)

Wednesday, September 10, 2014

OK day, tense night (and new tube)

It's been an OK day for Miss Reagan. She slept in her own bed until around 7am or so. She was sweet but still a little sensitive today (especially to loud noises or talking). She had speech this morning and then we drove in to Dell to have her gj-tube replaced. It's been a little leaky, but she's had it for 4 months, so it's time for a new one (we're not waiting another 6 months again until it breaks)! Despite being told that 12:30pm was the ideal time for an appt, we waited 30min in a waiting room full of crying kids and then waited another 30min or so in the x-ray room for the radiologist! The radiologist was particularly chatty (not necessarily a good thing for Reagan) and when she abruptly pulled the x-ray over Reagan she nearly lost it! Well, she did lose it for a second, but we were able to calm her down and she was fine for the procedure. Everything went smoothly and we were on our way in no time. Reagan did seem a little agitated the rest of the day, we thought maybe her tummy was hurting her because of the procedure and the fact that she had a big gassy poo earlier in the day. She tolerated the teacher just fine but then wasn't a huge fan of the loud tv or her brother tonight. She was definitely tense and we weren't sure what was causing it. At one point I picked her up to change her diaper (and she did fine with that), but as soon as I tried to pick her up and hold her, she freaked out! Tons of tears! Lots of crying. I eventually just put her back in her chair. She calmed down but was never quite right the rest of the night. I gave her clonidine around 10pm to try to help her fall asleep and by 10:30 she was freaking out again and crying hysterically. Eventually around 11pm I gave her a dose of Lortab which finally helped her to settle down and fall asleep! I'm not sure what's going on with her. Is it tummy related, is it neurological?? No clue. I'm just hoping and  praying she sleeps tonight! Ugh. I'm still so on the fence on what to do. Do we change her over to the ketogenic diet now, do we wait?? I hate making these decisions! Please pray for us!