A Little Bit Of This, A Little Bit Of That

Wow... I have been busy. I am now volunteering twice a week at the boy's school and finding little time for anything anymore.I am really enjoying being in the school. Feels good. Feels right. Maybe because I used to teach before kids. Maybe because it is interaction. Maybe because it gets me out of the house. Not sure if the reason really matters, just happy to do it. In fact, I have to head off again in 45 min to help out with Matthew's in-line skating class.

And yes, we were able to get the skate on over his brace! Yay!

I asked Matthew's p/t about his back pain. Yes. It is from the lift. And he should know. He also wears a half inch lift. On his left shoe. Eventually, it will get better.

I've also been busy trying to make Matthew's lunches more exciting and have discovered the world of Bento Boxes. Never heard of them? Neither had I but now it is my obsession. This is what I aspire to


Ok, maybe just this



So I am starting off slow. Today, this is what Matthew got for a Halloween lunch.


Owl and bat jam sandwiches, pumpkin muffins and fruit.

I know, I know. Nothing like what I aspire too, but I have many, many years to get to where I am going. So be patient, I hope to share some better stuff soon.

Back Pain For A Six Year Old

Matthew started complaining Thursday morning of back pain. I thought maybe he slept funny. Offered him some tylenol before school which he took. Very unusual for him. This is a kid who can be wracked with allergies and refuse medication.

Thursday evening. Same thing.

Friday morning, again.

Friday late afternoon. Bad. He was so upset at the end of school. Won't get into it, but he had to be dragged off the playground for bad behavior and ended up losing movie night. He was in bed by 6 pm. Slept 13 hours straight.

Saturday morning. Back pain still.

Sunday, finally. No pain.

It took until Saturday afternoon for me to to clue in. He had been wearing the shoe with the lift at school for a week when the pain started.

Ahhhhhhh.

I am betting that he has been moving for almost 6 yrs with his hips out of place. Now, for the first time, they are in place.

And it hurts.

Poor kid.

Hopefully it will stop hurting soon.

Backyard Visitor Getting Brave

We were all a bit shocked at dinner tonight when this guy stopped by the deck (right by the back door) looking for his own dinner. I think it is a sharp shinned hawk.




Guess we weren't the only ones who were hungry.

School Update and a Jack-O-Lantern of Sorts

All is well with Matthew's lift and the school. As long as Matthew doesn't intentionally make marks they are fine with him wearing it.

When he needs new shoes, I will look into perhaps a different color.

Right now I am not going to worry about it. I have other things to do. My glasses broke on the weekend and they are not able to get replacement parts to fix them. I have a lovely piece of electrical tape holding the arm on. It works somewhat, but I need new glasses. And, of course, I have not had my eyes checked in years, so I need a new prescription as well. Will be busy getting that done.

And my Jack-O-Lantern.

A Sad Day For The Clubfoot Community

On Sunday, after suffering a debilitating stroke, Dr. Ponseti has passed away at the age of 95.

Dr. Ponseti revolutionized the world of clubfeet by developing a method (now referred to as the Ponseti method worldwide) of serial casting rather then surgeries to correct clubfeet.

Matthew and I never had the pleasure of meeting this man although I did correspond with him through email. In 2003, when Matthew was 4 months old, I had concerns that his foot was not correcting properly. I decided to send an email to the legendary man himself thinking that maybe if I was lucky, one of his staff members would email back with their professional opinion. I mean really, at the time, the man was 89 years old.

I was shocked to receive an email back within an hour from his personal secretary stating that he had gone for the day but would respond to my inquiry first thing in the morning. And, yes, he got back to me the next day with his professional opinion as well as contact information of the nearest doctor (Dr Pirani in Vancouver) that could do what he would do.

The clubfoot community has suffered a great loss but at the same time is very fortunate to have so many doctors that have trained under him to continue his legacy. For not only has this great man imparted his clubfoot knowledge, but he has somehow shared his love for the children and parents as well.

What a rare person to touch and change so many lives. What a rare opportunity for us to have seen his accomplishments first hand.

He will be dearly missed.

Just When You Think It's Safe To Get Back In The Water

I really thought I had things licked. I foolishly thought we were over a rough spot and it would be smooth sailing for a few months.

I was wrong.

Matthew came home yesterday upset. His indoor shoes have a black sole and he is not allowed to wear them because they mark the school floor.

Remember what they look like now with the lift.


So, I took the shoe and sure enough, it marks my kitchen floor. And the mark does not come off.

Crap.

I have a call into the teacher. Hoping that we can come to a compromise with this shoe. Hope that if he is responsible and does not intentionally make marks, that he can continue to wear them.

Otherwise, it means buying yet another pair of new shoes and trying to see if there is a lift that can be added that is not black.

That reminds me, I need to call Matthew's orthotist and see if there is even such a thing.

Too Soon To Tell...

It may be too soon to tell, but I am getting a good feeling from Matthew's new physiotherapist.

When I met him and asked if he would be willing to work with kids, he told me that when he was little, he had some rather severe issues with his feet and legs. A surgeon had wanted to do some intensive surgeries. His parents sought out other therapies, hoping to avoid surgery. He was fortunate enough to do so. And, now he is a p/t.

When we arrived today, he asked how St. Louis went. I told him about the cast and about the leg length discrepancy. He stopped dead in his tracks and looked at me.

"which leg?"

"the left"

"how much?

"1/2 inch"

He looked at me again and said

"mine too"

I am struggling to find words to describe the feeling I have about this situation. Uncanny, fortunate, uplifting, beautiful, wonderful... seem to work. Somehow, this little foot has taken Matthew to a person who has led a similar life. Who has been casted, needed p/t, wears a lift in his shoe.

I think he has a soft spot for Matthew. I think that can only be the start of something good.

He told me today I was doing the right thing with Matthew. That this was the right path. That he just knew it.

Somehow, today, I feel it too.

Feels Like Christmas

The view out our window is enough to make you think Christmas is just around the corner.


And we got to open this cheery looking package today.


Not sure who I felt more sorry for. The poor doctor attempting to remove a Dobbs cast or poor Matthew who had to endure it. Normally, cast removal takes five minutes tops. This poor guy was stumped and mystified and it took him 40 minutes. Normally, the cast comes off in two pieces. This poor guy butchered the cast (better then butchering the child) and we only saved 2 of the bigger pieces.


Matthew is doing well and walking on it already, although it is tender and he tires quickly. Shouldn't take long before the crutches go back into storage.


Also stopped in and saw Matthew's orthotist for a lift on his indoor school shoes. Found out that only 3/4 inches and more are covered here. How silly is that? So 1/2 inch lift is considered...what? Unnecessary? Cosmetic? How silly. They shoe should be ready in a few days.

Here's hoping this leg length discrepancy and shoe lift is the last piece of the puzzle and his foot stops regressing.

St. Louis, The Good, The Bad, And The Ugly

We are back from St. Louis with an interesting update.

First of all, the good.

We were sitting in the waiting room at the hospital. I was reading my book when Matthew said "Mommy! I see my friend D!" I told him, no that I didn't think he would see his buddy there. (He made a friend in St. Louis his first trip there in May and saw him a lot) I looked up and sure enough, there he was! Talk about fate! We had all flown in for an appointment that day without knowing the other was there. The boys were thrilled to be able to see one another again and to play at Haven House later.

The other good... Dr. Dobbs was happy with Matthew's foot. He said it still looked good.

The Bad

Matthew's heel cord has been getting tight despite all the p/t. Dr. Dobbs thought it would be beneficial for him to spend a week in a cast. Get a good long stretch. Matthew was really upset about this. He really didn't want a cast again. He had some tears when we were left alone. He cried because he would miss swimming. He cried because he didn't want to fly again with a cast. He cried because he wouldn't be able to do the monkey bars. He cried because he didn't want to have to go to school in a cast. But, by the time we made it to the cast room, he put on his brave face and sucked it up better then any adult could. Have I ever mentioned how proud I am of him? :)

The Ugly

Dr. Dobbs intern came in first and had Matthew walk. He immediately felt Matthew's hips. It was like a huge light bulb going off... leg length discrepancy. Sure enough. Matthew's left leg (clubfoot leg) is 1/2 inch shorter then his other leg. The X-rays they took when they removed his cast in May show it clear as day.

Why is this the ugly? Maybe because I am so mad that his surgeon here of 6 years never once measured for it. Never once mentioned the possibility. Never once said that clubfoot with neurological disorders often have leg length discrepancies. SIX years... not once. And Dr. Dobbs found it in Matthew's first post-cast appointment.

What is really ugly is that perhaps, if this had been caught earlier, he could have been wearing a lift in his shoe for a long time and maybe, just maybe it would have slowed his regressions or (maybe this is wishful thinking) prevented some of them.

I was able to pick Dr. Dobbs and Kristina (his nurse)'s brains while they casted him. Dr. Dobbs said that yes, it is possible that with the lift, it could reduce the regression. That his running/walking with his foot turned in could be due to the leg length difference. He also said that one day, Matthew WILL be done with casts. It will happen, he just can't tell me when.

Those were the most beautiful words I have heard in a long time. I told him I was going to hold him to that.

I have to say, Dr. Dobbs and Kristina are such a wonderful team to work with. We have been so lucky to have found them.

So Matthew got his cast (red with a green stripe - his choice) and it is straighter then any of his previous casts. It has made it difficult to move and impossible to reach his foot, but I hope, a better stretch.

Then, off to orthotics to get his brace fixed and to get a lift on the shoe that we had with us. The entire black portion on the bottom is the lift that was glued to the shoe. I have an appointment to take his other shoes in here to have lifts put on them.



Then, back to Haven House to play with his buddy.


What is under the cups? Why praying mantis's of course!


We are now back home and Matthew has not complained once about his cast, save for this morning when he said he had to show me something. I took a peak at his big toe. It was covered in dried blood. The fiberglass was a bit too long and digging into his toe. I got out the scissors and cut it back. He said thank you and ran off to play before school.

Man... that kid is one tough cookie. Makes my heart swell with pride.