PT parade

Alex has been doing a super job working hard in therapy, and all her hard work is paying off!  The doctors in Minnesota had been telling us to expect it to take 6 months to a year for Alex to get back to her pre-surgery level of function and skill.  Yet here it is 3.5 months post surgery and for the most part, she has it all back!  During her first time out with crutches she walked a half-mile!  And here she is at the gym-wide parade we had on Thursday.  She started off with independent walking (while playing the tambourine, mind you) and switched to crutches when she got tired.  Look at her speed and largely heel-toe pattern in her crutches--beautiful! 

 

Isaac has been using his time at the big gym to practice his pre-crawling moves.  Soon, Little Buddy, soon!  :)

 

 



Dance!

Alex made up this dance tonight.  All the moves were her idea, and look at her wiggle!  She has never wiggled her hips ever before!  So amazing!  I honestly had not expected her to be doing this well this soon.  We still aren't doing a lot of walking yet, but I am happy to get her very strong in standing for now.  :)  At the end of the dance Alex said, "Thank you, Daddy, for taking me to Gillette to get the surgery that is helping me get stronger."  How awesome is that?!

Dancing 8 weeks post-op

Fancy Pictures!

 

A couple of weeks ago, we had the chance to meet with a professional photographer and take "fancy pictures."  This was through the Ronald McDonald House (I can't say enough glowing things about that organization!).  We were quite happy with how they turned out.  :)

Good-bye to Gillette!

After 6.5 LONG weeks we are ready to say good-bye to Gillette!  It has gone quicker than I would have imagined and while it was stressful at times for Alex, I have also seen a lot of growth in her.  She loves saying hi to new people and is taking more and more steps towards independence.  While not a favorite activity by any means, she has been learning to dress herself in OT, and I love that she knows she CAN even if it is tough.  She has been working hard at therapy and though we have a long ways to go and lots more hard work to do until she is back to her pre-surgery level of activity, it will be exciting to see where she is at 6 months to a year from now.  We have met some neat people and heard some great stories:  some sad, some inspiring.  It has been an experience none of us will forget.

I have to take a moment to thank Jim, who survived the long stay sleeping in the hospital.  He probably left the place 2 or 3 times the whole time we were here and managed not to go crazy.  He balanced work plus the lionshare of Alex's care and emotional support.  He is awesome.  As is my dad.  The fact that he was nearly always helping Isaac nap or taking Alex on prone cart adventures gave Jim the time he needed to get his work done.  I don't think that would have been possible otherwise.

Thanks to everyone who sent cards and little gifts and everything for Alex!  We look forward to seeing our Portland friends soon! 

Fun weekend!

We had a really nice weekend!  Paw Paw Mark and Cindy came to visit and so did Ronald McDonald!  And possibly best of all--ALEX GOT TO LEAVE THE HOSPITAL for the first time in 6 weeks!  Sunday was a beautiful day, and there was a really cool international children's festival going on in downtown St. Paul.  It was just over a mile away in a park with lots of statues of the Peanuts characters (Charles Schulz was from St. Paul--who knew?) so we walked to it.  Alex seemed happy enough just on the walk, and the children's festival turned out to be totally the type of thing she is in to.  There was a mariachi band, Indian dancing, a drum show, and tents with crafts.  But the highlight was a show called Swoon, with dancers from Australia who do their dance on very tall swaying poles.  We have been having a bit of a hard time getting Alex to eat decent meals at the hospital (after 6 weeks and a never-changing menu she is understandably very tired of hospital food) so we were pretty happy when she wolfed down a hot-dog at the fair.  And Isaac?  He slept the entire 3.5 hours we were gone! 

Rehab friends

We really enjoyed Alex's room-mate Alina and were sad to see her leave (almost a month ago now!).  Imagine Alex's delight when *her* friend Alina came to the hospital to visit *her* last week!  The girls had lunch and wheeled around a together, looking for mystery music (someone's cell phone) and a dark room to show off their glow-in-the-dark bracelets. 

Working on walking

In therapy this week, Alex has gotten to start practicing walking for real.  The past few times Alex has done the robot, they take off the robot legs for the last 5-10 minutes or so and have Alex practice walking on the treadmill alone.  We are really trying to get her to learn how to walk with a "heel-toe" gait.

Treadmill walking without the robot 

 

 

Yesterday, Alex walked with a walker contraption I had never seen before.  She was harnessed in, so some of her body weight was supported and the PT guided it.  Despite being sick and tired, she did a really good job with this, and seemed to enjoy to be up and walking.

 

Body weight supported walker device video

 

Yesterday's trial went so well that today we tried out Alex's walker for the first time.  We have been trying various experiments to help focus Alex's attention on the heel-toe walking pattern.  This is very hard for her and something she NEVER did before the surgery.  One of her PTs came up with the idea of putting velcro around the toe part of her shoe so that it sticks to the carpet and makes more noise if she doesn't first put her heel down.  This seemed to help Alex really pay attention to what her feet were doing.  These were some of her best heel-toe strikes yet.

 

walker with velcro video