Wednesday, March 26, 2008



I keep hearing my friends tell me I have a lot of strength. It is nice to hear, but I honestly don't feel that I posess any more strength then the average mom.

The one who is strong is this amazing 5 yr old that some greater power decided would be bestowed to me. I sometimes imagine the conversation...

'See that woman? She has been praying for a baby for many yrs. She has had many heartaches. Give her Matthew. He is head strong, determined, and will push her every day. She waited so long, she will embrace that pushing, it will make her strong enough to deal with all that comes with him.'

I gather my strength from Matthew. Here is a kid who all he wants to do is run and yet, running is so difficult for him. But, he never sees that. All he sees is that he can run fast, and that he will run faster now that his foot has been operated on. His faith and determination give me strength.

We had the first of many orthotic adjustments today. He limped into the clinic because his AFO was rubbing his ankle. Taber (Ken is away) adjusted it and had Matthew walk in the hall to see if it was better. Matthew ran. Of course. For him, there is only running and sleeping.

He never once got mad that his AFO hurt his ankle. He didn't get mad that he ran so fast that his foot couldn't keep up and he had to do a few hops. He didn't get mad that his little brother was ahead of him. Because, you see, Ryan was only barely ahead of him today.

And tomorrow is a new day.

I am no stronger then average. I am just blessed to have a strong 5 yr old who never complains that his foot doesn't work right, he just waits patiently and keeps running, til it does.

How can I not be in awe of that. He is my strength.

Saturday, March 22, 2008

The best is yet to come

Heard back from the children's yesterday. Guess I am panicking a bit too early. Sounds like all we are seeing is completely normal and that wearing his AFO (and going barefoot at times) is the best thing at this point. I thanked the nurse for calling but did ask her about his numb spots on his foot. That is also normal. Apparently most of those will go away with time as the nerve grows back.

On to today.

We went out to Home Depot this morning. Matthew felt he had to run. So, we let him. And run he did. Hubby and I had to pick our jaws up off the floor. That kid, who 8 weeks earlier had his foot basically reconstructed ... RAN.

No Terry Fox hop.

No slow, uneven gait.

He ran.

That little foot of his lifted straight back and pulled through...straight.

It was a sight that only hubby and I appreciated. And maybe the older lady who was in the aisle with us, because I was bursting and had to tell her as Matthew ran up and down and up and down that aisle. Certainly the guy who worked there and told Matthew he shouldn't be running didn't understand. But that's ok. By that time, Matthew had asked me to chase him, so I did and I think after a minute, maybe some one said something becuase he too stood and watched.

We were supposed to be headed to Cabo San Lucas to dive the Sea of Cortez. I am told it is a truly wonderful thing to see. Sadly, those people have been misinformed, and I am truly blessed not to be in Cabo on a beach. I can dive 1000 more times any where in the world and still, the most amazing sight was today, that little boy, running for all it was worth.

And the best is yet to come.

Thursday, March 20, 2008

The Latest AFO

We went to get Matthew's new AFO yesterday. As promised, Ken made him a Spiderman AFO. Seems to be fitting nicely, only needed a few initial tweeks, but we will have to wait and see if we need to go back for more fittings.

Ken had him walk down the hallway during the fitting and he commented to me that it looks like he will needs some physical therapy to relearn how to walk. I saw it too. His gait is still the same as it was pre-surgery. He is in-toeing and walking on the outside of his foot.

So today I have left messages with his surgeon and his PUF co oridinator to see if we can get some P/T started asap. Don;t want to wait to long and have his foot regress after all he has been through.

He is moving well today. Not running yet, but I imagine he will be soon. Right now he has the 'Terry Fox Hop'.

Here is his AFO

And here is a pose.

Tuesday, March 18, 2008

March 18, a day of celebrations

So... Today.

Got at the hospital at 7:55 this morning. Everyone was waiting. Margo, Jenn, Ken, and Taber. Poor Matthew. He brought Cat (his favorite stuffie) but left it in the van because he said "mommy, I am going to be a brave boy and don't need cat" He took one look at everyone and freaked. Screamed for cat and ran the other way. I grabbed him, picked him up and he yelled "put me down! I'll walk in" Then a huge grin and giggle started from him. Hmmmm, bet he was gonna run.

Got him in and Margo cut the cast off to tons of screaming and crying and a few "uncle"s (hubby plays with them and makes them say Uncle Crusher to stop)

His foot is looking so much better then 2 weeks ago. The swelling has gone down so much! It no longer looks like a huge club attached to the bottom of a skinny stick.

Ken gave the boys doughnuts that he brought. Did I ever mention that Ken was the first one to ever give the boys doughnuts?! Did I ever mention that I love Ken?! He is so great with Matthew. He put the plaster cast on, it dried and it was cut off in the span of Matthew eating his doughnut.

Ken left, we see him tomorrow at 12:30 for his AFO fitting. It will be another Spiderman one.

Margo said it was ok for matthew to go without a cast til tomorrow. So while they were getting a wheelchair for him, I asked Margo if it was possible that he was moving his toes upwards. She said that the tendon transfer should start to take effect 6 weeks post surgery. We are 8 weeks post surgery so she said yes, it is completely possible, but not huge movements yet. Then she said she has been working with matthew a long time (yrs). She said she is so pleased with how his foot looks and is being manipulated that we are going to be very pleased with the results of this surgery. All the while she had a huge grin on her face.

OMg I had to fight back a few tears there!

So, I took matthew to school and told him, as soon as he feels he can, he is allowed to walk on his foot. I carried him in, but with in 10 min, he was walking on it. I tell ya, I was shocked... yet again but that little boy.

I had told him he could come home with me after free play if he wanted to, but he said he would stay. So, Ryan and I came home and he stayed like nothing special had happened today.

But today is a very special day. You see, 4 yrs ago Sunday we were given Matthew's diagnosis of nerve damage, and the path that we were to be on was outlined as much as it could be. We already knew about the clubfoot, the nerve damage was difficult to deal with. And we didn;t get much time because that night, I was sent to the hospital to be induced 3 weeks early to have Ryan because he had stopped growing and needed to be out immediately.

Little Ryan joined our family 4 yrs ago today, weighing in at 4 lbs 7 oz.

So almost 4 yrs to the date of matthew's diagnosis, he is on the road to recovery. And we get to celebrate with birthday cake and candles.

It's a little bit yucky...but what a difference!

here are some photos. Because he has been casted for 8 weeks, the scabs have not fallen off yet, but the skin underneath is pink and the incisions look great. All of the skin on his foot will peel off within the next few days to a week.

Inside of his foot. This is where they removed the posterior tibial tendon from and where they released (by cutting) all of the muscles in his foot because they were too tight. I'm guessing by it's size, they were also able to remove the part of his heel bone from here too.

Top of his foot where they reattached the posterior tibial tendon. If you look up his leg, you can see the bottom of another incision

Bottom of his foot. You can see the wart just below his toes. It looks like we may loose it soon. You can also see the where the big blister is that I mentioned after his cast change 2 weeks ago. It should come off very soon. Matthew is already picking at it. You can also see one of the incisions on his leg.

And the big difference....



His foot is so much straighter already!

Monday, March 17, 2008

Could it be?

ok, I know that I am really wanting to see something. I know that this could be wishful thinking, but, I think, I really truly think, I saw Matthew's toes move upwards ever so slightly.

I will be asking Margo tomorrow if she sees it too.

If he is moving them upwards, it means that the tendon and muscle that they moved over to the top of his foot, is actually working and it could mean in 6 m time, he will actually have upward motion of his foot. And that the surgery was a complete success....all that this poor little kid has been through, will have been so so worth it.

I'm so filled with hope and excitement, I'm not sure if I can sleep tonight.

Monday, March 10, 2008

Operation Freeze revisited

We repeated Operation Freeze on the weekend. It went equally well, he only fussed for about the last 5 sec, and then went right back to sleep. I am so thankful that pharmacist gave me that hint. that it will be gone by the time he gets his AFO.

Went out yesterday and bought Matthew a new bike. His bike was so so so small it was comical. That extra 4 inches really showed on his old bike.

So the afternoon was spent bike riding around from the park to our house, to the other park and back again. Ryan is doing well, he was still riding a tricycle last summer, so he is pleased to have a 2 wheeler. Still needs some practise, but at this rate, hubby and I will have to pull out our bikes just to keep up.

Next week is the big day. Out of the cast, into the AFO. Starting to get nervous already. He is going to be very weak because the muscle and tendon that was moved won't be fully functional yet and will probably be sore without the support of the cast. Wondering how soon he will be walking on it. Glad I still have an ample supply of codeine.

Wednesday, March 5, 2008

News from the surgeon

We are back from the hospital with a nice clean new green cast. Smells so much better too.

Matthew lost it when his cast was being cut off, but it was purely anxiety, not pain. He even yelled "call the police!" a few times. Margo got a kick out of that. She is always telling Matthew that adults can't hurt kids and if they did, the police would stop it. So the kid put it all together. Margo thought it was pretty funny and was telling a bunch of the nurses.

Dr Keifer took a look and was pleased with the progress and given the go ahead to have his AFO fitted in 2 weeks. Margo was so pleased that she said he could actually be fitted right now for the AFO.

The bottom of his foot was really wet. Looked like a huge blister that had burst and the skin was hanging there. About the size of a few loonies put together, so we popped him into a wheelchair and went to the cafeteria to let it air out for 30 min. I'm wondering if that was the source of the stink, because this was one stinky cast.

The incisions look good too. It is odd though, because all the scabs are still there 6 weeks post-op, but then they have no where to go being under a cast. Dr. K brushed one and it fell off. Freaked Matthew out.

Dr K asked if I wanted Matthew sedated for the casting seeing he screamed so much to have this one removed. I told him it was only anxiety, and he should be ok for putting the new one on. Just to be on the safe side, they put him in the back casting room where they could close the door. Didn't need to. He was great for the new cast. Margo said his foot is stretching all on its own and she didn't even need to apply pressure.

Matthew said he wanted to walk on the new cast. He limped for a few minutes but was full on running when we hit the parking lot. Of course, because they are not supposed to run in the parking lot

I called his orthotist to set up the AFO fitting. He is coming to the hospital for 8 am on March 18 to fit him, will make it that day and fit the AFO on the 19th because he leaves town that evening for 3 weeks.

So, it looks like Matthew will be all done casts in 2 weeks! I am in shock! I had at least 4 weeks in my mind!

What a great feeling.... it doesn't get any better then this.

Tuesday, March 4, 2008

Cast change

We are off to the children's tomorrow morning. Kind of a big day. His surgeon will assess if the swelling has gone down enough for an AFO fitting in 2 weeks. If it has, then casting could be done within the next 3-4 weeks. If not, then it could be another 6 weeks or longer.

I am interested to get this cast off and take a look at the incisions again. Last time Matthew was so upset I didn't look to closely. Maybe it is just morbid curiousity but I have no idea where they made the incisions to remove part of his heel bone. So that will be interesting, in a scientific kinda way.

I am also glad to get rid of this cast. It seems particularly stinky. And yesterday, they were playing in the sand box and there is a bunch of sand in there. Not to mention the fact that hubby told me that he had been spraying cologne on his foot. So, it is time for this stinky cast to go... at least off his foot. Matthew seems to want to keep them. We have a bunch of them upstairs in his closet.

The other news is that his wart looks unchanged. The instructions for the wart removal say that you have to wait 2 weeks before a second treatment can be done. That would be Friday. So looks like we will have to undergo Operation Freeze for a second time.

Will update the cast change news when I can.