The Cast is OFF!

Well, I still have a lot of writing to do about our Spica cast experience as I did not post alot the last several weeks.... been alittle busy! However, it is worthy to post that Simon's cast has come off!

yeah!

He was admitted to Shriner's hospital for Rehab 4 days ago, but had a very short stay and actually got to go home on pass overnight and we never spent the night. That was nice since I need to pack most of his food because of his allergies, and he would have been bored and stir crazy (and made everyone else crazy too!).

Unexpected events.... alot of pain when the cast came off. I didn't really expect this. Someone moved him - very carefully, but his knee did bend and that could have been what started the pain. He was "frozen" and afraid to move for over an hour. He was given Loritab (vicodin). He calmed somewhat and we coaxed him to get into the big tub (which was GREAT!). Once he was in the warm water and his leg moved on it's own - he realized he was OK! After that he did great. He went down for rehab and actually walked about 15 feet! That was the second shocker! I didn't even think he'd be able to sit up on his own let alone walk the first day. That was great.

However, we did get alittle too excited I think because that night at home, he wanted to walk all the time and although I was right behind him ALL THE TIME, I turned my head for a second to talk to someone and he ended up falling. He tried to make a 180 degree turn and could turn his leg fast enough. Luckily he was not hurt - just surprised and scared for a minute, but did get up a few minutes later and walked more.



Since that first night he is alittle more resistant to walking. I think he is sore and the novelty has worn off. He is moving ALOT more though and that is progress. He moves all around on the couch or in bed and we have been swimming twice and he is getting some good range of motion in the water. I bribe him to walk from the living room to the kitchen for treats and he can do it without alot of pain. I'm going to start getting creative next week with "where" we go walking to make it more interesting and not just "rehab" or "practice" - because to a 4 year old you know "that's boring"! I did get out his tricycle and was surprised that he could ride it! And at a pretty good clip in the garage. So that's definately doing some good.

Sleep got alittle harder with the cast off. He had been sleeping fine through the night with the cast on - could flip all around and didn't need me after the first 3 weeks. But with the cast off - he is more exposed to pain and it is not as easy to move and he gets stiff. What really helps is we put a small camping pillow between his legs and he is much more comfortable. The therapist at the hospital told us too that if their knees are touching, it can be painful.

Here are some pics of the cast coming off!




Here is the cool "bath tub" they put him in which completely relaxed him and allowed him to start moving. They used this gurney to load him up in from the room and wheeled it right to the bath tub. They then put the gurney over the bathtub and the bathtub actually raised up to make him go under the water very slowly. The bar he held onto gave him the security he needed as he was very nervous at first. But then loved it.




He liked going to "the gym" for rehab.


Keeping busy the last few weeks was not easy. We were both bored and some days quite lazy (at least Mom was!) But we tried to find things to do and we made it through. Here are some pics of things we did:

1. Having a beanbag handy was very helpful. You can bring it almost anywhere and plop them down in it. We brought it downstairs to our playroom as well as outside as pictured below playing with the bubble machine by the swing set. He could also play on his stomach on the bean bag.





He played constantly on this homemade roller board which was his main way to get around the house. The wheelchair was quite large due to the cast and not nearly as fun as this zippy toy.

He painted on the floor (sometimes literally!) as well as helped bake things that were done floor level so he could help.


Though it was a bit of a pain for the "grown-ups" (rather mom I should say), Simon helped with some planting and watering in his wheelchair and got alittle "rare" bit of Oregon March sun.

We went to the mall a few times which was fun, but could get into some power struggles with a 4 year old at the controls of a wheelchair! We tried not to run anyone over! His favorite store was the remote control car store and it was very quite so he got to play


Stay tuned for more info on Rehab! I also plan to write a long article on the Spica cast experience, tips, and things to do while in a spica cast.

Pics and more

Well, Simon is downstairs on the beanbag watching his brother practice pitching with grandparent supervision so I thought I'd run to the computer and post some more pictures!

Here we go!

This is obviously a picture in the hospital the day of surgery. He had a foley catheter in as long as the epideral was in (2 1/2 days). The entire cast was green at this time - which he loved! But when they had to secure the gortex before leaving, they only had blue fiberglass.... so now he is multi-colored!

Below is Simon enjoying the high life! This was the first days home from the hospital, he spent more time in bed. No such luck now! Look at that stack of movies! We rented the hospital tray - but don't really need it now, so are returning it before we incur another month's rent on it ($40). He does still watch the portable DVD player before going to bed at night.

Below is a closer look at the carseat situation. It's the one in the forefront. I added the back to the seat and then built it up with those neck rests that you use on a plane to make it pretty firm and flat. We then use the regular seat belt. They do have harnesses and special car seats for different kid's sizes but this is what they said would work for us. I've thought of removing one of the arm rests which I can do with a screwdriver, but Simon had a fit at the mention of it for some reason. So he barely fits inbetween the armrests with his leg spread.





We put an extra twin mattress we happen to have in the shed on the floor in our den - which is kind of out of the way of the main living area. This has been great for him to lay on his stomach and lean over and play with toys. I then brought down the computer screen which happen to be right near by and he is currently obsessed with nickjr.com free games and videos....

I was quite proud of myself for thinking of this one.... how is he going to poop? Well, at the hospital they mentioned a "bed pan". Knowing my son, I thought he would NOT go for that very easily AT ALL! So I started thinking. We rented a commode and unscrewed the backrest. We put it at the highest leg setting (they are adjustable) and it was almost even with the bed. Perfect! since he is almost flat. We put the pillow and rolled up towel so he is slightly raised and he has been perfectly fine going potty in this chair. We also line it with a garbage bag so we can easily just take it out to the garbage! No mess to clean up! He is also easy to wipe right while he is on the commode (for those who need to know!) and we always kept a box of babywipes nearby. I do sleep with Simon because he has to be repositioned every few hours at least. Luckily shortly after his diagnosis just before age 3, he needed a new bed and I went with a full size and I'm so glad because when he needs a parent to be with him at night - we can also fit and get some sleep unlike on those little twin beds!

At first when we got home from the hospital I just went to bed when he did. But then I never had time to do anything! So I bought these extra long, extra tall bed rails from babies R Us and they are great. They actually slide underneath the bed when not in use. I put my side down when I go to bed and it doesn't even wake him up. These were a good investment - alittle spendy at $35 each - but well worth the break I get when he goes to bed at night. We keep a baby monitor we never got rid of in his room and the living room when we aren't in there so we can hear him stir. He is starting to turn himself from side to side and on his stomach at night by himself! Last night was the first time I think I didn't have to reposition him! But he gets cold, or hot, or tangled in the covers.... so you are awake many times a night - but it's getting alittle better. The first week or so is the worse because they needs meds through the night for pain control (and they don't always want to take it when they are half asleep - but are constantly moaning in pain - so they need it!) Luckily we are past that now.