First day of therapy

Today was the beginning of a more typical routine for Alex for the next 6 weeks.  We get a schedule in the morning for the day's activities.  She had 30 min of OT, 30 min of PT, 30 min of school, 30 of recreational therapy (they made a sign for her door today, eventually they do sports and such I believe).  We had a 90 min break in there for lunch and relaxation and then 30 min of OT and 30 min of PT.  Right now, OT and PT look pretty similar.  They are working on bridges, rolling, and being in prone (on her tummy) and lifting her arms to work on head/neck/shoulder strength.  They are just starting to work toward lifting up more toward sitting (see bottom pic).  By the end of the week, she should progress to a wheelchair, although she will still need to be in her prone cart 3 times a day.

 





An exciting dinner!

Last night, Isaac got his first taste of solid food!  Green beans.  For as much as he has been watching us eat, I thought he'd be a bit more excited about it, but he was kind of neutral to the whole experience.  He liked wearing a bib and sitting with Grandpa though. 

 

And then, halfway through Alex's dinner, we noticed that her first very loose tooth had gone missing!!!  The toothfairy came last night and Alex picked out a donut with her loose change.  Here she is making some silly faces with marbles and showing off her new smile.  :)

Ronald McDonald House

One of the neatest things while we've been here is making use of the Ronald McDonald Family Room. Volunteers serve a home-cooked dinner every night and there are usually leftovers or various odds and ends to eat for lunch. For a 6-week hospital stay, it is nice to not have to worry about buying all our meals. It has also been a very comfortable place to nurse Isaac and give him floor time.

Enjoying outside

Yesterday, Alex continued to enjoy time outside in the playground.  She got a new Teddy from Aunt Betsy and Uncle Ken and insisted Teddy go on a ride with her.  :)

Escape!

 



Yesterday Alex blissfully wished for a hot air balloon so she could escape her hospital room. While a far cry from a hot air balloon, her prone cart was a welcome diversion from laying in her hospital room. Alex was sad to get off it both times after an hour (we were supposed to stay on a half-hour but she was allowed to do more if she tolerated it). I think we will have no trouble reaching our 3 hour a day goal by Tuesday.

They have a really nice playground at the hospital, and Alex was thrilled to go outside.  The weather was in the 70s and absolutely beautiful today.  Quite a contrast to the *multiple* snow storms we had between arriving last Saturday and her surgery on Wednesday!

Alex and Daddy showing Isaac a pussywillow tuft from a bush in the playground area.

Good news/bad news

The bad news is that Alex vomited a little after breakfast this morning.  The good news is that it meant she got her hair really nice and clean a day or two earlier than she would have otherwise.  Washing her hair while keeping her flat on her back was quite a challenge.  The nurse tried to first use a shower cap type thing, but it wasn't wet enough and she ended up finding a flat basin type thing with a neck rest--not too dissimilar to what they use at a hair salon only it had a spout where the water could drain into a trash can.  Even though Alex hates getting her hair washed and combed at home, she did a really good job putting up with this.  Tells me just how sick she has been of watching TV and such--I think anything out of the ordinary was a welcome change.

Friday update

Things are going pretty well, considering Alex still has to be flat on her back and is a little tired of watching TV by today--day 3.  She is off IV drugs, and currently only has the IV for fluids.  She will get that and her catheter taken out tomorrow morning in time for her first ride on the prone cart.  We got out of her room briefly last night, but her bed is pretty unwieldy to move around, so hopefully she will enjoy getting out and about on the prone cart, which is a lot more maneuverable.