Confirmation!

It has been confirmed...

We have 15 degrees of dorsiflexion!!

You guys have no idea how this feels! 2 weeks ago, at his last P/T appt there was nothing and now he is at 15 degrees! He was also able to sustain a hold.

(This means that I have no idea.

But it means that his foot is moving up 15 degrees past neutral, which is when your foot and leg are at a 90 degree angle.

To give you an idea of how amazing this truly is, last yr, when he was botoxed and casted for 8 weeks, we could barely stretch his foot into neutral after the casting. He can now lift his foot higher then that on his own. )

She says that they stretching I am doing as well as the P/T is working. I am so thrilled!

What does this mean? It means that for the first time in his life, Matthew has the possibility of near normal motion of his foot. It will never look and function completely normally, but this gives the hope that at some point, he will not need to wear his AFO 8-10 hours every day.

Btw, I had to fight back the tears when his P/T told me. This is the best news... ever.

Waiting

10:09 AM, May. 28, 2008 .. 0 comments .. Link

I spoke with Matthew's P/T after dropping him off this morning. She has a session with him and will take a look to see if it is indeed moving upwards (active dorsiflextion). She will most likely be gone by the time I pick Matthew up, so I will have to wait until his IPP meeting tomorrow to find out.

Gosh, waiting is so hard!

Could it be?

I'm not sure.

Trying hard not to jump the gun here.

Trying to contain some excitement, because, well I am just not sure.

Last night, I was stretching Matthew's foot as always. Asked him to try to lift his toes. I do that periodically. I thought I saw his toes move up.

Just a bit. Just a tiny bit. But I was so excited I yelled for Craig to come up and bring the video camera. He watched and then taped it. He thought he saw it too.

So, after bed, I watched the video over and over and over and over again. To the point where I am not even sure I saw it anymore. Then Craig and I tried to figure out if he could have been moving his leg to make it look like his toes moved. I did hold his ankle so I think his foot was immobilized.

I think it moved... up.

What does this mean?

In the world of doctors and surgery, it means that the muscle/tendon that they moved from the inside of his foot has attached and may be starting to work. That the loss of muscle/nerve conduction was less then anticipated.

In the world of one 5 yr old boy, it means that maybe just maybe he will be able to have a foot that can function without the use of an AFO for the rest of his life.

I am going to try to attach the video. Please, be candid. Tell me what you think.

Tippy toes

I am really trying to stay positive with this. Really, I am. Some days it is so hard when I see his foot without the AFO. Honestly, it looks bad. I was hoping it would look more normal, but it doesn't. So, I try to focus on the positives.

Last night, I was reading the boys a story before bed. Matthew stood up, turned around in a circle a few times before finally saying "Mommy.... look.... "

I looked down and there he was on his tippy toes.

K, you need to wipe the image from your mind of a little boy way up on his tip toes. It wasn't that. In fact, if he hadn't pointed it out, I would never have seen it. But his heels were off the ground ever so slight. And his toes were pointed forward.

On his tippy toes as much as he can at this point.

It really is baby steps over here, and I need to celebrate them all.

Today, I celebrate that ever so tiny step that most people would dismiss because I have to, I need to, I want to.

I've said it before and will say it again, this boy's determination will take him far in this world.

Physio

Matthew saw a Physical Therapist.

She is quite happy with how he can function with his AFO.

Without it is another story.

She was surprised at how tight his foot is. Asked me what the surgeon said about that. I never asked. Felt rather foolish that I hadn;t asked, I mean, I have been concerned about it just didn;t know what to expect so I thought maybe that was normal. Apparently not.

So, now I get to add to my routine daily physio and daily stretching. He will see her in 2 weeks and we can assess how often he will see her.

Hubby and I talked and decided to add 5 min of silly walks right after dinner. Matthew needs to work on walking on his tip toes, his heels, and the insides of his feet. Immediately I thought of the Ministry of Silly Walks (Monty Python). Thought, hey, that would work for half of the physio. The other half we will just have to try to fit in.

Not looking forward to the stretching though. I know it shouldn't hurt, but it won't feel good. I hate to be the bad guy, but I have to keep in mind the ultimate goal. We want for him to be as normal functioning as possible. If this could help to be AFO free during regular day to day activity, gosh, it will be worth every second of this.

Determination

Matthew played soccer again last night. He absolutely LOVES it. Never seen a kid so excited when he gets to kick the ball during a game.

Well, last night, Matthew got a goal. Not one of those break away, run to the net, kick it high in the corner over the goalie's shoulder kinda goal, but one of those, busy traffic around the net, someone kicked it towards Matthew, he bumped it with his shin and it skipped quietly past a player into the net. But that doesn't matter. He got a goal. He knew it, I knew it, and all of the spectators knew it.

Not much makes me cry, but I had to wipe the tears away. My expectations for his soccer season were blown away. He is less then 4 months post surgery. I wasn't even sure if he could play soccer, let alone be one of two kids last night to score. I am so proud of him. I wanted to yell out to all of the parents. To take Matthew's shoes off and show them all the scars so they too could understand how amazing that small acheivement was.

It is funny how something so little, and so normal to most parents and kids can bring so hope for the future. All of a sudden, I didn't see Matthew sitting on the sidelines watch games in high school, I saw him trying out and making teams. Playing baseball, basketball, volleyball. What he decides he wants to do, he will make it happen. His determination will bring him so far in this world.

Today, I embrace that determination.

Busted!

So on Tuesday, I went to get Matthew ready for soccer and found his AFO had a huge crack in it.
It is hard to see, but the crack goes from where it articulates, down past the ankle and down to the middle of the bottom of the foot.



Put it on him anyways and he played soccer. Did really well, was able to keep up with the other kids, kicked the ball a few times and even took it away from the other team a few times.

So on Wednesday, I called his orthotist. He got an appt at 10:15. Found out then that the AFO was not repairable. But, he was able to have a new one made in the next few hours, could I leave the old AFO there and come back at 2:30.

Matthew was seeing his surgeon at the ACH at 1:20 and I needed the old AFO so he could tell if it was fitting well. So I had to leave his old AFO at the orthotist, go back for 12:45 to pick it up, see his surgeon at the hospital at 1:20 and back to the orthotist for 2:30. Among the other things that had to happen.

Anyways, got to the hospital on time and got in right away. His surgeon looked and felt the fit was ok, but was disappointed at the front foot still pulling in and the lack of upward motion. Never good to hear the surgeon say that.

He did say though that it could take 2 yrs before we see what we want. 2 years. Sigh. Guess I was hoping for sooner.

He was rather amazed to hear that we all did a 4 km hike on the weekend and that Matthew did about 3.75 km easy. The last .25 was tears, sitting down, tears, bribes and more tears. He was sore, but walked the last bit and was rewarded with his choice of restaurant for dinner. He picked Mexican.

So back we went to his orthotist who had his new AFO made and ready. So we are now back to square one, with sore spots with a new AFO. Trying to get a good fit so he can wear it 8-10 hours a day. Hoping this one will adjust easier then the others in the past.

One a really positive note, not sure if it was the new AFO or not, but I was able to get a pair of running shoes (Ironman) and rubber boots at Wal*Mart today. We were getting desperate!