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

 

 

 

 



Sick!

Isaac caught his first cold over the weekend.  By Tuesday, Grammy, Alex and I all had it.  Jim said Alex had a really terrible night of sleep on Monday, up 8-10 times, once for an hour and a half, all with moaning and feverish words like she needed to be "on the 9th floor" (a random floor in the adult part of the hospital).  It was pretty pathetic, and she probably only got about 6 or 7 hours at best (Jim only got about 3 hours of broken sleep, poor guy!).  I was sure it was going to be a terrible day for therapy, but thanks to some new toys they brought out at therapy and some new activities, she surprisingly had a pretty decent day. 

As though Isaac knew we all needed a boost, at the end of the day he treated us all to his first laughs.  He absolutely loves his big sister and found everything she was doing at dinner to be quick funny. They say laughter is the best medicine.  Whatever the case, Alex got a great night of sleep last night and seemed much better today.

Video of Isaac laughing

Visit with Grammy

We had a lovely visit last weekend with Grammy.  A highlight was when Grammy and Grandpa were out touring with Alex in her stander and they got to listen to an impromptu song by one of the hospital employees on the piano in one of the common areas.  Alex twirled in her stander while he played and clapped loudly enough to earn an encore song.  :)  Grammy was also amazed by how much Isaac has changed since the beginning of our trip.  He is extremely close to sitting unsupported and one of his favorite things is jumping.



Alex loves getting her hands on the camera!  Here are a couple pictures she took:

And a really sweet video of Isaac practicing his sitting:  Isaac Sitting Video

First time side stepping

This was Alex's first attempt at side-stepping post-surgery.  Historically, side-stepping has been very hard for Alex because the muscles in her hips are really weak.  She actually did a pretty good job here her first time trying it.  Alex's PTs at home had made an effort to really focus on strengthening this area before surgery and it looks like we are getting some benefit from that. 

Side-stepping video

Visit with Uncle Dave and Maureen!

We had a really nice weekend.  Alex got the clear from the PTs and OTs to do as much floor-play as she wants.  She has been having a lot of fun playing in the lobby play area with Isaac.  And as a special treat, Uncle Dave and Maureen drove up from Wisconsin for a visit on Sunday!  Alex really enjoyed seeing them, and especially loved taking them on a tour of the hospital and showing them all the toys in the play area.  It was a fun distraction for all of us.

Alex took this picture of Uncle Dave and Isaac.

Alex and Uncle Dave had a lot of fun playing "Wheely Races"  here is a video:

Wheely Race video

Level 3 bridging!

Both the PTs and OTs have really been stressing the bridging exercise for the past 3 weeks.  They were quite hard for Alex starting out, but she has been getting stronger and stronger with all the practice.  This is the first time we saw this particular PT, but she was really good at pushing Alex on this last Friday.  She called Level 1 bridging when you have your arms at your side and push into the floor.  That was easy, so she pushed Alex to do Level 2 bridging which was crossing her arms on her chest while she bridged.  That was easy, so she pushed Alex to do Level 3 bridging and hold it in the air for 5 seconds.  She then had Alex do a bonus move where she kept her knees together by sqeezing the therapist's hand.  Next step will be a bridge for 5 seconds keeping her knees together totally by herself, without even squeezing a therapist's hand.  We had a new PT who tried that on Saturday, and Alex wasn't quite there just yet.  But I imagine she will be there in not too long!

Bridging video

The Stander Dance

Alex absolutely loves her stander and has invented her own "stander dance."  She was practicing while waiting for therapy the other day and I got a video:  Alex's stander dance

Something for the therapists

In these videos, Alex is practicing holding the "half-kneel" position, which is how typical people usually stand up from the floor using a table or something for support. It may not look all that difficult, but therapists who've worked with her as well as others who've worked closely with CP kids know just how difficult this position is due to the spasticity and muscle weakness. So Alex usually "muscles up", using mainly her arms and both legs at the same time when she stands up from the floor at a table.  She may always do this, but it would be pretty cool if she could get strong enough and learn how to do it through half-kneel--it is better on the joints and helps build strength and all kinds of good stuff.  This is one of the first times she has attempted this position post-surgery, and she did really, really well.  Even before surgery, she rarely held this position without at least some support from the therapist, so I was absolutely thrilled to see her do so well in it already.  The therapist in the video is very pleased, and offers hope that because she is doing so well already that maybe she can learn to get into the position on her own and use it in her daily life on her own.  I am excited that it seems to me that it suggests that spasticity was a bigger limiter than we realized and that Alex does have at least some underlying muscle strength.  And it is fun to be starting to work toward being in more and more upright positions.  Jim and I are really looking forward to standing practice and taking steps with her walker, parallel bars, etc.

 half-kneel video 1

half-kneel video 2

 

lokomat

Alex just started using the lokomat on Wednesday.  It is this really cool robot type thing that helps keep her feet and legs in proper positioning while using the treadmill.  They start the kids off supporting their body weight quite a bit, and gradually decrease the assistance as the weeks go on.  She will be using the robot for ~30-45 min 3x a week.  Alex thinks it is pretty cool.  A little wikipedia snippet is here:  http://en.wikipedia.org/wiki/Hocoma

 

Lokomat in action

 

Rolling stander/standing wheelchair

Alex got her newest piece of equipment on Wednesday.  You can think of it as kind of a rolling stander or a standing wheelchair.  It is pretty cool and Alex has been digging the independence with it--she seems to like it better than her wheelchair (I think it is a little bit easier for her to propel at this point).  She now has all of her equipment.  In addition to her 2.5 hours of therapy, school, etc., she is to do 3 hours in her prone cart, 1.5 hours in her wheelchair, and 1.5-3 hours in her rolling stander.

 Alex and her roomie heading to the evening craft time.

Alex doing her craft wiht a volunteer.

The rolling stander in action.  (Her first time in it.)

A good start

Today was a pretty good day overall!  Alex was still a bit whiney, but less so than last week, and she worked hard in her therapies.  She had one school session that she didn't participate well in, but after a break she did great in her second school session. Her wheelchair time has been upped to 30 min, 3x a day.  The best part about the increased wheelchair time is that it gives her a chance to eat her meals in a fully upright position allowing her to transition back to feeding herself (although I think she enjoyed Mommy and Daddy feeding her quite a bit). 

A quiet day

Sundays are the only day of the week with absolutely no therapies or scheduled events (other than an optional fun activity at 1:30).   Even on Sundays Alex still has her required time in her equipment:  3 hours in the prone cart and three 15 minute sessions in the wheelchair; the wheelchair requirement will be upped soon (I expect tomorrow) and eventually she will get a standing wheelchair as well.  That said, this is the most relaxed day of the week and Alex really enjoyed having more time to herself. 

Alex is also getting more interested in her room-mate and loves having their separating curtain open so they can peek at each other from their beds.  The two of them plus some other girls in the unit made popcorn and watched part of a movie together in the playroom. 

May snow

Did I mention it snowed yesterday? Ugh--this Minnesota weather is killing me!

Therapy update

Alex has been pretty grumpy during therapy this week.  It is clearly hard work to move her body into positions that used to be easy, and I can only imagine how frustrating that must be.  She is still working hard most of the time (just with a lot of whining), and she is making good progress.  She got her wheelchair on Thursday and is working on her sitting balance in therapy.  I am hoping after a nice break this weekend she is ready to have a fresh start on Monday.

The iPad continues to be a powerful motivator.

Daddy and Alex decorating a guitar at Thursday's evening activity.

Pretty Princess Alex

Our little songwriter/videographer

Ales has always enjoyed taking pictures.  Her Aunt Sarah gave her a pink camera several years ago which Alex has always loved.  This trip, she has been loving getting her hands on my camera which has a video function.  I thought this was a cute one.

 

Beautiful Sky Video

 



Isaac's day



Before the trip, I had vague worries about how Isaac would do with the change in environment and not having his usual routines.  I needn't have worried.  He is thriving--he seems to love meeting new people and as long as he is well-fed and rested he has a pretty ready smile for anyone he meets.  He gets passed around a lot between the nurses and volunteers at the Ronald McDonald house and seems to enjoy that too.  He gets lots of big sister time in her bed and she thoughtfully picks out shows she thinks he would like on the TV.  Naptime is largely spent in the snuggly front pack with Grandpa.  It's a pretty good life.

Grandpa's favorite nap spot is the skybridge.

Time for a change

One of the crummiest things about our rehab unit is that the rooms are double occupancy and the census is pretty high right now.  We knew this going in, and when we were paired with a 4-year-old girl who had the rhizotomy surgery the same day as Alex, we had high hopes of the girls becoming friends.  But not only has the family been fairly anti-social, but instead of taking shifts, both her parents leave when it is time to have a meal, etc. even though Sophie cries the entire time they are gone.  Then they both snuck out at night while Sophie was sleeping for several hours and of course she woke up and started crying.  Luckily Alex was so exhausted she slept through it (and the nurses quickly took her out of the room upon Jim's request), but we did request a room change because of it. 

Now we are rooming with another 6-year-old girl who had the rhizotomy surgery 2 weeks before Alex.  Her family is super nice and Alina is a sweet girl.  Neither girl is what I'd call socially outgoing, but Alina says "hi" and I think Alex is getting to where she'll say "hi" back.  Lately she has been in a generally grumpy mood.  I think she is both physically tired as well as being annoyed to have her day so incredibly structured without a lot of time for her to do her own thing (at least not nearly as much as she is used to, especially having been homeschooled for the past year).  Alina will be here through next Friday, so we are happy to have the stability of a good room-mate situation for at least the next week.  Then hopefully we'll manage to get some days on our own before we get another room-mate.

Alex and her new roomie (in yellow shirt) at the hospital's dog show--they usually have some kind of activity in the evenings for the kids who stay at the hospital.

Rough Mornings

The past two mornings have been really rough.  She has a pretty busy schedule, often with OT followed immediately by PT or vice versa.  Since they are more or less working on the same things right now, it makes for over an hour of constant therapy, and that is proving to be a little too much for her, at lease in the morning.  The past two mornings she has done well with her first session but then been too tired for her second session.  Yesterday she said "MORE hard work?!" and broke down in tears and it was pretty much the same story this morning as well.  But after a break and lunch she has managed to do really well in her afternoon sessions, even though those have been back-to-back as well.  We requested today that they schedule her other activities (school, playgroup etc,) in between her OT and PT sessions to give her more of break between them to see if that goes any better.  She is clearly tired by the end of her days--I would say more so than even when she was doing her 5-hr intensive PT days at home.  It is amazing to me how hard just holding her head up and sitting and rolling are after the surgery.  That said, she is doing everything she is supposed to be doing and seems to be pretty on track.  She keeps pushing into hands and knees on her own which has each therapist who sees her doing it raising their eyebrows, like they are surprised she is doing it on her own.  But they seem happy with that, and I *think* she is going to get to start using her wheelchair tomorrow.  She has figured out how to roll her prone cart on her own, so I am hoping she takes to the wheelchair easily--she has never had one before so it will be interesting to see how that goes. 

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.  :)