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.

Birthday Party!