Serial Casting

We had a pretty good week. The boys were off school for President's Day on Monday and Tuesday so they only had a short week at school. As usual, Jake had several therapy appointments this week and we made a decision on Wednesday to try a new treatment for him. We've been talking about some different options to try and help his gait. Even with the botox, his foot is still rolling to the outside edge when he walks and his knee is turning outward. His PT and the orthodic specialist recommended we try serial casting which will stretch his heal cord and increase the range of motion in his ankle. This will also help his foot fit better in the new brace he'll be getting after the casting treatments. He was fit for the brace he has now while he was still in the hospital and his ankle muscles haven't come back as quickly as they thought they would, so it's really not working the way it was intended.

He got the first cast on Friday. What they did was hold his foot in what would be a fairly neutral position for most of us, cast it and he'll wear it for a week. Each week for 3-4 weeks, they'll bring the foot up a little higher stretching the heel cord a little bit more and put on a new cast. We were really worried about how it would affect his mobility, but he's doing great. He gets a little off balance due to the weight of the cast, but he's able to walk and get around just fine. Funny enough, his biggest worry about the whole thing was having to wear athletic/sweat pants to school since he's definitely a jeans kid. He is quite excited that he gets a break from PT and home PT for the next few weeks since there isn't too much we can do with his cast on. As always, he's being quite the trooper.

More Climbing

What a beautiful Sunday! We took the boys rock climbing this morning for some fun OT/PT then went to check out the new Trader Joe's (first in Colorado!) I knew better then to go at 11am on a Sunday, let alone on opening weekend, but went anyway. To say it was nuts is an understatement. I can't wait to go back when I can really check things out. When we got home, we had to take advantage of a 64 degree day in February and took a long walk. Todd had the dog so I took Jake in his chair and got quite a nice workout in too. For being as skinny as he is, he's quite heavy when being pushed uphill!

We are still having a tough time keeping Jake motivated to do his exercises. He is at a point he can't see the progress he's making, even though it's still happening. In the hospital, he would often improve between his morning and afternoon sessions. Now progress is measured more in weeks instead of days. Some things like his walking seem to be on a sliding scale...better some days, worse others. When he went rock climbing today, he got a lot higher than he did last time, at one point getting above where Todd could hold on to help him. A lot of it was coming from his leg strength, but we noticed his left hand grip wasn't quite as strong. His stamina is clearly improving though. We took Todd's truck today and didn't think to get his wheelchair (which stays in my car) and he walked all over two grocery stores and Kohl's, all after rock climbing for an hour. There is no way he could have walked that much even a month ago.

Going through all we have during the past eight months has given me a new found respect for those parents who have been dealing with some type of developmental issue since birth. I never imagined the incredible amount of time and energy it takes scheduling appointments, going to appointments/therapies, doing research, all the periodic testing, dealing with the school...it's become a full time job itself. On top of that, you have all the things at home that now take more time - exercises, homework, stretching, getting out the door, getting dressed, etc. It's a constantly changing game plan for all of us. In many ways we've had to really slow down and yet we have so much more to do. Somehow it all just gets done or it doesn't and that's ok too. I'm not complaining, you willingly do what you need to do for your kids, but it's just been very eye-opening.

Jake Becomes a Boy Scout

The highlight for Jake this week came on Saturday.  Jake joined cub scouts in first grade and

another mom and I became his den leaders. We've had a great group of boys we've been working with over the past five years as they've worked their way up the ranks. Their cub scout journey ended on Saturday when they became boy scouts.

When Jake ended up in hospital, we weren't sure if he was going to be able to finish what needed to be done to earn his Arrow of Light. (Arrow of Light is an honor that can be earned as a Webelow II by completing a set of requirements.) He had a handful of things planned to complete over the summer which obviously wasn't able to happen. The boys can become boy scouts without earning the Arrow of Light, but it's what he's been working towards the past year and a half. And, come on, you get an arrow! In January, he finished the last of his requirements and was so excited. When we were going through his book, he realized how little he had left to do to also earn the Super Achiever which is completing all 20 activity pins (you only need 8 of the 20 for Arrow of Light). He decided he wanted to do that too and was able to get everything finished.

On Saturday, we had our Blue and Gold banquet. It's a really cool ceremony for the boys and their families, Jake was grinning ear to ear all night. We have dinner, a cake contest (the "pizza" in the bottom right was our submission this year) and the ceremony itself. There is a story teller who talks about the boys journey as a new tiger scout working towards becoming an eagle scout. He's very entertaining and even lights a scarf on fire. The boys who earned their Super Achiever Award are recognized and then the Arrow of Light is awarded. (It was pretty cool when the storyteller selected Luke to help him distribute the arrows, he took his job very seriously.)  The boys thank their leaders, then crossover a bridge with their parents and are welcomed by the boy scout troop they are joining. I tried really hard to keep it together but finally just gave in to the tears. I was so proud to see Jake up on the stage receiving not only his Arrow but also his Super Achiever. Scouts has been such a big part of our life for the past five years and it was the first group of kids he saw once he got out of the hospital. He went to a scout meeting even before he went back to school. Our scout family has been so incredibly supportive of Jake and the rest of us...I'm really going to miss them. Luke still has two more years, but all the older boys are now moving on.

Jake was pretty wiped out by the end of the night, but also really happy which was great to see.

P.S. If you want to see the pictures bigger, you can do so here https://plus.google.com/photos/113131787883990698606/albums/5978617672967725745?authkey=COCv1YbHrJzh9AE

Botox - Round 2

For those of us Bronco fans, tough game to watch...very disappointing way to end the season. However, we got to spend the game with family, share the excitement of the home team being in the Super Bowl and ate some good food. At the end of the day, that is what's important. Not minimizing the difficult loss, we just have a different perspective now. Who I really feel for is the players....I personally would hate to have one of my less than stellar moments (which I've had many!) visible in front of millions of people, then have to stand up and talk about it to reporters. No thanks. 

So back to Jake...his walking seems to have declined a little bit again. My personal theory is the botox has kicked in and he needs to relearn his gait with more relaxed leg muscles. He's been so used to walking with tight muscles the past month that he now needs some time to recalibrate. The good thing is, his PT and stretch therapist both said he was more flexible and not nearly as tight which is what we are working towards. His left foot is also far less "floppy" and isn't pointing down as much which is also really good. Now when he had his brace off, he can set it almost flat which is huge progress. We are very hopeful to see how things go the next couple of months with his therapy.