Friday, June 16, 2017

Sleeping the bad away

Reagan was OUT last night when we finally got her to bed. I thought she'd sleep the whole night through. I was wrong. It all started around midnight, when Ryan woke up crying and then ended up in bed with us. He must've been having a bad dream or something because it took him a while to finally calm down and go back to sleep. And then Reagan started fussing. I went in and found her sideways in bed. I straightened her out and put her back under her covers and she fell back to sleep. She woke back up an hour or so later fussing once again. Again I was able to just tuck her back in and she went back to sleep. Then around 5:30am or so she woke up again and was upset. This time requiring medication to help ease whatever it was bothering her. And from then on she was out. She slept the entire day. Through diaper changes. Through her nurse's assessment. Through everything. All day long. She didn't wake up until right around 7:30pm. Her pump had run out and was beeping. I went in and got her bag/pump, she was still out. She needed a little more formula added to it so I made up some more and then took it back upstairs to hook her up...and she was awake! She was SO tense. Crunched up into a ball and rolling back and forth (hands completely tangled up in her hair). Eyes very zoned out but wide open. I brought her downstairs and it did not get better. She was super sensitive. To light, to noises, to me even touching her. I held her on my lap but she would just go back and forth from stiffening out like a board, to crunching back up into a ball and whacking me in the face with her arms. She was trembling with the constant tension in her body. I finally gave up fighting with her and laid her down on the floor but she just got worse. I eventually had to give her something and she was finally able to relax and fall back asleep. I guess we're lucky she was able to sleep the day away today because she's obviously still not feeling well and definitely uncomfortable when awake. Poor girl. Still very neurologically off today. Hoping she can sleep it off tonight and wake up tomorrow and have a good Father's Day weekend. Please keep her in your prayers!

This was Reagan hence the bow and long hair!

Working on letters and tracing.

Thursday, June 15, 2017

Not a good day

Reagan was awake and vocalizing this morning around 6:30am. I went in to check on her and she was laying completely on top of her covers. I tucked her back in and told her to go back to sleep and she was quiet for another hour. Then just before 8 she started back up again, so I moved her to her therapy room and put on cartoons. Ryan slept in this morning, not waking up until around 9am. Love that. That means he wasn't in our bed at 4 or 5am waking us up (which has become the norm lately). Reagan has been pretty crunchy and tense all day today. Lots of vocalizing...in an unhappy way. This morning her nurse saw her doing the fixed head turn (aka seizure) and we saw something else questionable this afternoon. She's definitely just all around off today neurologically. Tooth grinding. Super sensitive to talking. She only had one therapy today, OT. Just before therapy she was starting to freak out a bit. Thankfully her OT knows her very well and was able to try some relaxing techniques with her and at one point she even fell asleep for a few minutes! Sweet girl. It was not a good day for my girl today. Tonight our nurse stayed late so we could meet up with our Bible study group for a pot luck dinner. It was nice to get out but I was worried about my girl. She was getting increasingly tense and was super stressed by the time we got home. She was able to finally doze off with the help of some medicine and mommy's tight squeezing. Thankfully Dad was able to get her moved to bed, now we're just praying she can stay asleep!



Ryan was craving pizza so we stopped for a quick slice at whole foods!
He was super happy to get to eat upstairs where he could people watch!

Practicing writing his name...on our fence!

Swim lessons

Wednesday, June 14, 2017

Spitty/rolly girl

Reagan has had a pretty good day today. She had speech this morning and then school this afternoon. She's still going to town on her hand, needing an arm restraint off and on to try to give her hand a rest. And getting so spitty from chewing on her hands nonstop, I had to completely change her clothes out tonight they were so damp! Silly girl. She's been super squirmy again tonight. Rolling around and squirming off her floor mat and turning herself completely around! She's a mover and a shaker!


Ryan's drawing of Reagan (with some direction from me, but all on his own)...I was very impressed with the picture and her name!
He also did a really good job writing the alphabet today!

Tuesday, June 13, 2017

A bit kooky/sensitive

Reagan's had a pretty good day again today. She had PT and OT today. She was a little sensitive to talking and a bit kooky/vocal but still did well. I bought the Batman Lego movie today and she tolerated (just barely) us all watching it with her this afternoon. I did have to threaten her brother a few times because his constant bouncing on her swing was about to drive her crazy! Tonight we've had to be a little careful with talking but she's held it together. She definitely lets us know when she doesn't like something! Hoping she's not trending in the wrong direction.

Monday, June 12, 2017

Oh Ryan!

Reagan had a good day today. She was super into her hands and chewing on them nonstop. It did interfere a little with speech this morning, but over all she did a pretty good job. She was most comfortable on the floor today, such a rolly polly. We had to constantly keep moving her back up onto her pillow, she was all over the place! Ryan gave us a good scare this morning. We're still not sure whether or not he actually did anything. I was upstairs helping the nurse with Reagan, when I heard Ryan calling me. I came down as soon as I could and Ryan was pointing to his mouth and telling me it hurt. Finally he said something along the lines of putting a screw in his mouth and now it was in his tummy (and his mouth hurt). Ugh. I gave him some toast and a drink and he seemed fine. Telling me his tummy was all better. I'm still not sure if he actually ate anything or not. Dad had been messing with some water heater parts in the living room the night before and we thought we had picked up all of the pieces/screws...but who knows. We never heard another word out of him about it, so we're just going to keep a close eye on him. This boy! Never a dull moment.








video

Sunday, June 11, 2017

Lazy Sunday

Reagan slept well and woke up a quiet and hot girl this morning. Not really sure what was going on but she was like a little oven when we took her out of bed this morning. Her arms, legs, body...all hot! Her forehead felt ok though and when I checked her temp it was 97. Very strange. She's been sweet and pretty easy going all day today. Only some slight sensitivity with her eyes and some teeth grinding when I hold her. Poor thing woke up with two mosquito bites this morning. One on her arm and one on her face! Ugh. She's so sensitive to them (they're bright red), who knows how long it will take for them to go away! We didn't do much today. Reagan and I laid around the house pretty much all day. Mike grilled tonight and then went swimming with Ryan. In the last week he's learned how to swim down to the bottom of the pool to retrieve things. At first Mike was having to push him down, but something clicked this week and all of a sudden he's swimming all the way down even in the deep end!! It's crazy! Mike was working with him today with diving. Not quite there yet. A lot of belly flops, but he didn't seem to mind! Such a silly boy.


Saturday, June 10, 2017

Sweet girl

Reagan slept well last night and then just kept sleeping this morning. Or so we thought. I checked on her first thing in the morning, but her eyes were still shut. I kept peeking back at the monitor and she was very still, only moving occasionally and never making a peep. Finally around 10am we went back in to check on her and she was just laying there wide awake! Totally still and quiet, but wide awake. Silly girl. Who knows how long she had been laying there. Usually she doesn't hesitate to let us know, giving us a very loud vocalization letting us know "I'm awake! Come and get me!!!" She woke up much less serious today. Smiling from the get go. Still very quiet, but no shortage of smiles today. She's been pretty precious. Very cuddly and sweet. She's dozed back off a few times today...once when I put some warm laundry on top of her! Sweet girl.