Tuesday, April 22, 2014

Another busy day

Reagan was very restless last night. She started getting more and more vocal and finally around 3:20am I got up and gave her clonidine. Eventually she did go back to sleep! She slept in a little but woke up in time for back to back to back therapies (vision, OT, & PT). She did well for everything...she was very vocal and interactive. Then we sqeezed in a bath and a quick nap before heading to the Aquarium this afternoon. It was a perfect day for it...uncrowded and both kids were behaving themselves. We had a great time! 







Just another sleepy Monday

Reagan had a sleepy day today! This was a typical time that she wound have a sleepy day, but I'm sure our jam packed weekend contributed a little! This is actually her second sleepy Monday in a row (last Monday was an out of the ordinary sleepy day). But today her being a sleepy day was no surprise. She was a little restless the night before, but she slept nonetheless. She did wake up for a bit this morning, but only an hour or so, long enough to get her clothes and diaper changed! Poor girl, she needed her rest! Tonight she did wake up for a bit, but it was more me waking her up! She was very restless and moaning a lot in her sleep, so finally I just picked her up and forced her to wake up for a bit. She eventually fell back to sleep on her own but she still seems very restless! Hope she gets some sleep tonight! 

Sunday, April 20, 2014

On the road again

Reagan was restless last night. She was fighting falling asleep big time! Mike eventually got her to doze off, but I'm not sure how well she actually slept! This morning she was up and at em early. When I got up, she was watching Sunday morning political shows with Daddy. Today we made our second road trip in two days...this time it was to Houston! It was an hour longer than our drive yesterday and it felt like eternity! Ryan was more difficult this time around and I found myself playing referee as he tried to take his frustrations out on his sister! Reagan was such a good girl and quite the traveler! Ryan had fun running a muck but still doesn't have the hang of hunting Easter eggs! I told him to pick up an egg and put it in the basket, he carried it over to his basket ball goal and  tossed it in! Not quite right, but it was a basket! We're all exhausted tonight and my girl is looking restless once more! Please keep it in your prayers that she can get some sleep tonight! 


Saturday, April 19, 2014

Morgan's Wonderland

Reagan slept well again last night. She was awake and kicking by 7am, but she was in a good mood. She was still having the random squealing outbursts this morning, but she mellowed out a bit as the day went on. I spent the morning getting everything ready for our trip to Morgan's Wonderland for Jackson's birthday party. I'm SO glad that everything worked out just right and we were able to make it! I met Jackson's mom Meghan years ago, when Reagan and Jackson were both right at a year old and starting ACTH treatment for their infantile spasms. A year later Reagan and Jackson went through a month of HBOT together in Austin. Jackson has had multiple brain surgeries and is doing really well now! It's amazing everything our two kiddos have been through in their 7 years! It was a beautiful day...sunny but breezy enough that it was very cool and comfortable. Reagan was laid back and sweet and Ryan ran around like a maniac (but definitely enjoyed himself)! It wasn't the best day for poor Jackson and he had several meltdowns, but hey, we've all been there (and Meghan later found out the insole of his shoe was all twisted up which could have been part of the problem)! Anyway, a great time was had by all and we will definitely be venturing back to the park in the future. It was approximately an 1.5hr drive from our house, but it didn't really feel that far away! Both kids were very yawny once we got home, so I'm pretty sure we're all going to be sleeping well tonight!









Done!

Friday, April 18, 2014

Still a little off but better

Reagan slept well last night and woke up this morning a little more happy. She's still definitely tense (especially in her body), but she's not nearly as serious as precious days. Still having lots (probably more) of the ultra high pitched squeals! And even though the squeals can sometimes lead into agitation, there were no signs of that. Only one therapy today, speech, and she did well with that. They're still working on getting approval for her eye gaze device. Looks like we might get to another loaner device in the meantime. Reagan's still got a little hint of congestion in her nose and doing the occasional cough/choke, but it's hard to tell if it's actual nausea, sinus drainage, or her jamming her fingers down her throat (so she's still on the round the clock Zofran). Tomorrow (Saturday) is the big day and we're going to attempt to venture out to Morgan's wonderland for Reagan's friend Jackson's birthday party! We've never been and we haven't seen Jackson and his family in a couple years, so it should be fun! Praying everyone is in their best behavior!

Thursday, April 17, 2014

Getting there

Reagan slept well last night. Her brother, not so much! I'm not sure what was up with him, but he woke up crying at 4am and we made the bad decision to put him in bed with us. He's awful to sleep with, tossing and turning, kicking and elbowing, no one got much sleep! Reagan woke up kicking the side of her bed, but otherwise content. She's had a pretty decent day, for day 2 of a bad streak. She's been pretty serious, no fussing or smiling, with the occasional straight faced super sonic high pitched squeal! Lots of chorea, especially in her legs. Still a little chokey and definitely stressed, but not too bad overall. She even tolerated PT and OT. Hoping tomorrow will be even better and that she'll be back to normal by Saturday (we're supposed to go to a birthday party Saturday at Morgan's wonderland)! 

Wednesday, April 16, 2014

Bad but not too bad

Reagan slept well last night but woke up this morning tense. No smiles, super stiff...it seemed bad days were upon us!  She was fine though and OT even managed to come and get in an early session. Unfortunately that was it for the day! She had a couple periods of nonstop crying this morning! She eventually calmed down and slept a lot this afternoon! Tonight she was OK. Stressed, but OK. Still very coughy/chokey. Tonight she fell asleep on her own, so hopefully she'll get some good rest tonight and wake up tomorrow feeling better! Thank you for keeping my girl in your prayers!!!