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.

Perking up

Alex got to start eating chicken broth around dinner time tonight which she cutely calls "soup soup" (because it is like chicken noodle soup but with no chicken or noodles).  She then ate part of 3 popsicles (they each got pretty messy halfway through, and then she got to get a new flavor too).  And then more soup and Cheerios.  With all the food, she is seeming to perk up a bit.

Isaac and I scored a room at the Ronald McDonald House at Gillette for tonight and tomorrow--it is literally down the hall from Alex's room.  Most importantly, it will allow Jim to get a good nap in tomorrow as I doubt they will get much sleep tonight.  I believe the nurses are coming every hour to  check vitals and they have to rotate Alex every two hours to prevent bed sores as she has to lay flat on her back. 

We found out that volunteers often make dinner for families at the Ronald McDonald House, and we can partake of that even when we aren't staying the night there.  Tonight was chicken noodle soup and it was quite good.

Address

If anyone wants to send Alex any mail, the address is:
Alex Waldemer
Rehab Unit
Gilette Children's Hospital
200 University Ave East
Saint Paul, MN 55101

Out of Surgery

Alex is out of surgery and seems to be recovering pretty well.  When we first saw her she was really groggy and uncomfortable, and as a parent that is really hard.  But her pain seems better controlled now and she is sleeping peacefully.  She woke up briefly and was answering questions and seemed to be feeling a little bit better and not crabby. We talked to the surgeon afterwards who was very happy with how the procedure went--said it went "textbook."  I think the next few days will be hard for all of us, but we are happy to have the surgery behind us.

In surgery

Alex's 4 am wake-up today actually was fortuitous as it allowed her plenty of time to wake-up and get settled into the day before our 6:15 check-in at the hospital.  She asked for breakfast but didn't put up a fuss for not getting any, despite the fact that she had been too sleepy to eat dinner last night (luckily we had a big lunch yesterday, but even so--that is being quite the trooper in my book!).  She seemed mildly anxious in the pre-op room but the child life specialist came in and brought an ipad for her to play on, and that cheered her up and she was calm for the anesthesiologist and went to sleep quickly.  They made the incision about an hour ago now and it will be another couple of hours until she is out of surgery.

Settling in!

• We survived the long day of travel to Minnesota pretty well and got in late Saturday night.  Both kids did great on the travel day but Alex only got 5 hours of sleep Saturday night and somehow managed not to take a nap.  Since then she has been doing a weird sleep routine of going to bed around 6 and getting up at 4 am.  We had some pre-op appointments on Monday and Tuesday and otherwise we mostly just hung out at our 2-bedroom apartment that is 5-10 min away from the hospital.  It is comfortable but no means luxurious--it is run by a nonprofit organization for families of patients in the hospital to stay in for a very reduced rate.  We made it to the Mall of America on Monday afternoon and Alex had a lot of fun tooling around the mall and riding a few rides with Grammy and Grandpa.

Ode to Isaac!

 Alex LOVES her little brother and has been especially into taking care of him lately. :)

 

Power Pumper

I was thrilled to find a Power Pumper on Craig's List last summer.  She just recently grew tall enough to use it effectively, but it is a great total body workout.  I am hoping to use it a lot this summer when we get back.

 

Countdown to surgery--1 week away!

As we are packing and getting ready to leave on our trip, I figured I would restart up the blog so we could have a centralized place to post updates on how Alex is doing.  As many of you know, we thought long and hard about doing this surgery and had her evaluated at both St. Louis and Minneapolis.  While it would have been 100x easier to do it in St. Louis, we just felt so much more comfortable with the team of doctors in Minnesota and a pain in the butt though it may be, we feel really good about starting her recovery with a team of people who see rhizotomy patients every day.  The rhizotomy surgery that Alex is having next Wednesday will permanently reduce some of the spasticity she has, which is largely what limits her mobility.  It will hopefully help her be more comfortable because her muscles won't be as tight, should make some movements easier, and hopefully will help her muscles get stronger.  But it will take several months, *possibly* up to a year  to regain her pre-surgery mobility, so this is definitely a long haul ordeal.  We have talked to Alex about it quite a bit, and she is no stranger to lots of therapy and seems signed on and invested in the process.  Luckily for us, we found out that a girl we met in therapy last year who Alex really liked had this surgery done at the same place in the fall.  Her mom gave us a link to her blog, and we were able to show Alex her friend using all the same equipment and activities that Alex will be doing, and I think that helped her feel more at ease with the whole idea.