Almost School Time…

We officially made it through the summer… which at sometimes seemed like it wouldn’t happen. Not for any medical reasons but just for kids being kids… they really know how to get on each others nerves! When I reflect, it is great that they are just back to being kids. Owen’s no longer the bionic kid and Gavin’s no longer afraid to get near his brother. Which you can see from these wrestling photos: (Ok… I did tell them to stop… clearly we still have to be careful. lol)

We took x-rays a week ago. It is amazing how the bone is healing. The holes are less noticeable.

We are still waiting to see what Dr. P says, but I’m pretty sure it’s still “no impact”… as there still are some weak spots in that bone.

I am concerned about Owen’s ankle. He’s really walking on his ankle bone. If you want a description and some great photos of the ankle bone, check out THIS site. Owen’s issue is he walks on his Talus. The Talus is the part of your foot, facing inward towards your other foot, that your shoe is sort of cut out for. It is just above your foot. Owen’s is down by his foot. This means it can get uncomfortable to be in shoes, and after standing for a while, he just gets pain in his foot. I know much of this is due to his foot being suspended for 10 months. I’m hoping we’ll see improvement with Physical Therapy, but part of me believes that there’s a good chance we may end up down in FL at some point in the future looking at options for his ankle. Owen has what Dr. Paley calls a Type II ankle. It’s not normal, but it’s functional. It is a ball and socket joint. He’s missing digits, and bones, but not so severely that the foot is fused, or that it can’t go flat. But I am worried that it’s starting to collapse more then it used to. So we’ll see… maybe it’s just a matter of re-strengthening those muscles. Prior to surgery, Owen had fabulous control of his foot due to his muscle build up, but that was sort of lost from not moving his foot for the 10 months.

We did pull him out of PT at the place down the street. Part of me felt he was not getting what he needed there. We need him to stretch, and build muscle and really progress. We don’t need him to simply go to PT to play. Owen plays all day. He is very good at play and staying active. He’s getting better daily from this play. I totally understand that pediatric PT involves play, but this was simply play without incorporating real exercises for Owen to do at home to improve.

So, going with plan B for PT, we were basically approved to get PT through Owen’s school. Which is fabulous for many reasons. First, I think he’s going to really succeed with the districts PT person who’s been doing this much longer then the person we had at the private facility. Second, it means less disruption for Owen, and myself, allowing me to work more often and not be driving to the school daily in the middle of the day. It also allows Owen to be active at school a few times a week. We are writing his PT into his 504 plan. I highly suggest all parents who have kids going through limb lengthening look into getting a 504 plan. It can allow for tutoring, and academic help, as well as physical needs – like elevator access… and now PT. For Owen, his physical limitations are inhibiting his ability to learn. For instance, getting from art to his classroom will take much longer. He may miss the first minutes of a lesson because he’s still walking down the hall. Rather then hold up the classroom, we work on making it so as the year goes on, he isn’t taking as long to get from one end of the school to the other. Also – thinks like the lunch line… or the bus line… it would be horrible if a child pushed passed Owen and caused him to fall. We have things in our 504 plan to handle the bus… making sure Owen’s the last person off the bus to avoid the pushing, and making sure an adult is with him when exiting the building during dismissal so he doesn’t get mowed over by kids being kids. So we are very excited about all of this.

Here are some pictures of Owen from this past weekend at a cousin’s wedding – you can see he looks great. You can see his scars, but they really have healed amazingly well. They aren’t too sensitive to touch anymore and he lets me put lotion on his leg.

I love this photo below… When Owen was going through surgery, my Mother-in-law sent a photo of Owen running freely on the beach. In her note she just kept thinking about him being free on the beach and knew it would happen again. This photo below just reminds me of that and how far we’ve come. You can also see that we have a ways to go… his foot tends to stay in that 90 degrees and he walks on his heel. His foot was fixed at that 90 degrees for so long that I think it’s going to be a while.

Just kids being kids below… so nice to see!

You can see he’s clearly “standing” on his left leg below. This is his pose most of the time… THIS is what we need to correct going forward. I had him on the wii today using the balance board… and it’s crazy how to the left he is… but it will get better with time.

We had two weddings this weekend… one the kids were in, and one the kids were invited too. It’s amazing how many people followed Owen’s surgery and how many people were so happy to see him walking free and clear of any assistance. We are really so, so thankful for all the support we’ve had throughout this procedure. Hopefully, down the line, all my typing will impact another family beginning this process or considering this procedure. We are so thankful that Dr. Paley was able to give Owen two equal legs…

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~ by capeKO71 on September 5, 2010.