Looking for a new plan

I need a plan.

I feel that we have come to a crossroads in Matthew's treatment and I need a plan...any plan. Feels like right now everyone is just sitting back waiting for his foot to regress to the point where they can do surgery again. Maybe that is not how they are treating it, but it is how I feel it is being treated. His surgeon doesn't want to see him for another 5 months. His p/t has told me that she feels the tendon transfer surgery is rarely successful... but then also admitted that perhaps because of her profession that she only sees the failed surgeries. His orthotist made an AFO that he rarely makes for children. All of these point to the wrong ending in my book.

The last time I felt like this was almost 6 years ago. Matthew was 4 months old and I was unsure. I looked at his foot and it did not look right. Correction. That is what I told everyone else. What I said to myself is his foot looked dead. I never used those words outloud though. Felt really odd to say that a part of your 4 m old miracle baby looked dead, so instead I told everyone it didn't look right. Looking back, I was seeing the drop foot aspect that no one else saw until he was 15 m old.

So the last time I felt like this, I emailed Dr. Ponseti. I sent photos and asked what he thought. Of course, back then we all thought we were dealing with a regular clubfoot. Dr. Ponseti sent contact information within 24 hours for a doctor in Vancouver. Vancouver is a one hour flight from here. I sent an email to Dr. Pirani in Vancouver. He called my house later that evening and invited us out to his clinic the following Monday. As luck would have it, a Calgary doctor was studing his techniques the day we showed up and took over Matthew's care.

So, I am getting that feeling again. That something is not right. That something else needs to be done. I think I will email Dr. Ponseti again, if he even answers emails anymore. He was no spring chicken the last time I contacted him.

But I am afraid to.

I am afraid that he will send us to Vancouver where Matthew will be serial casted again. I know, I know. It would be for his own good and isn't a different plan what I am looking for? It is just that Matthew in a full leg cast that he could not run, jump, leap, climb, and be a daredevil in would be pure hell for him, and anyone around him.

Also, I am afraid that it will be the answer to the imediate regression, but not the endless regressions. That we will find ourselves in the same position a year or two later.

So, instead of emailing, I spent some time yesterday signing up with the nosurgery4clubfoot yahoo group. And a few other clubfoot groups as well. Still waiting membership approval for the clubfoot canada group which I really want to take a peak at. When I belonged to those groups 6 years ago, there were only 2 Ponseti trained doctors in Canada. I am hoping for a few more by now.

I am hoping to chat with a few others who may have found themselves in similar situations. See what road they are on. See if we should follow, or if we need to find our own path.

Does a heart good

Matthew had physio today. That is never fun. I have resorted to (at the advice of his P/T) giving him Motrin before his session to help with the pain. And she brings her son's Nintendo DS for him to play so he is distracted and she can push his little foot farther. Today, it took 20 min to get him back to neutral.

After his session, Matthew said he wanted to run. No surprise there. For those of you who do not know him, he has two speeds... run and sleep. He had been sitting all morning in school (well, as much sitting as they do in Kindergarten) and then spent 45 min stretching his foot. He needed to run. She had him walk for a bit first, working again on getting him to try to put his heel down with each step, then she let him go. And go he did. He ran faster then I think I had ever seen. His arms pumped, his face was focused and he ran back and forth the length of the gymnasium. Ryan tried but could not keep up.

His P/T came over to me and said "how old is he again?" I said he is six now. She said, "I think you would be hard pressed to find any child that age that could keep up with him."

Talk about lifting your heart. Honestly... the best thing you could say to me right then. And he was barefoot. No brace.

Then Matthew took a run across a piece of balance equipment. Again, his p/t was amazed. She said she could not believe how much athletic ability he had.

Again, what a great feeling!

This kid truly amazes me. Maybe it is simply that he knows no other thing in life then the two feet that God gave him. Maybe he is some one who possesses something more then I know. Maybe I am just a proud Mommy. What ever it is, he amazes me. He takes what he has and makes the best of it.

No. He does even better then that.

He takes what he has and he makes it work on his own level. When he was running his heart out and impressing his p/t beyond his diagnosis, no one saw that little foot curving in, running on the side. All they saw was the potential athlete running for the gold.

This is another one for the trophy shelf.


Oh, and the rub mark is back. We see the orthotist on Monday.

Ouch!

When I picked Matthew up from school today he was almost in tears over his AFO. Took it off and found a nice big red rub mark with a nasty indentation in it. Luckily we got it before a blister. It never ceases to amaze me that for weeks he can wear the same type socks, same AFO, same shoes and do the same things then one day after 2 hours of wearing it he gets a rub mark.

So, he is out of it for the rest of the day and will wear it again tomorrow. If the rub mark comes back it means we head back to the orthotist for adjustments. I checked my calender, the boys are off school Thursday morning. We had planned a morning of staying in our pj's and laying around watching cartoons. Guess we may be off to see the orthotist instead.

Trying to fit it all in

Our appointment list just got increased again. Matthew's speech therapist called and wants to start seeing him weekly again but because it is so late in the school year the time slot she had available was Monday afternoons, middle of the afternoon.

So, now we have speech, physio, swimming, soccer and any stray orthotist appointment. Luckily his surgeon doesn't need to see him again til June. At least I think it is lucky... I also find it nerve wracking to go that long with no advice from him.

And the boys want to take Karate. All the extra appointments just make it had to fit it all in. Guess we will have to hold off on the Karate until swimming is over. Just find it sad that they have to miss out on the fun stuff so the doctor stuff can be fit in.

I am just so glad that o/t is all done. At least I hope I haven't jinxed it!

A Friday Funny

Last summer, two houses burned down in our neighborhood. The son of one of the homeowners and a friend were playing with matches and gasoline in the garage. The one house is in the process of being rebuilt, the other was recently torn down and the lot sits empty. Luckily no one was seriously injured. It has made a huge impression on my boys as we see it almost daily so I used it as a teachable moment about fire safety.

K, I know that wasn't funny, but it was the background for this story. Maybe it wasn't needed but I was up late last night and early this morning and got little sleep so I had a lot of coffee and I think I am rambling. But anyhoo...

This morning on the way to school, the fire safety conversation started again.

Ryan: Mommy, do you remember the little boy who played with matches and burned those houses down?

Me: Yes, Ryan.

Ryan: Tell the story again.

Heehee. That always makes me giggle. So I tell the story in detail again and end with the 'so what are some things you need to remember to be safe from fire?'

Matthew: Don't ever play with matches.

Ryan: Tell the police if you see a fire.

Me: Or an adult.

Matthew: Don't throw toys in the kitchen.

Me: Why?

Matthew: Because it could land on the stove and burn!

Me: And what about being safe around the firepit?

Ryan: Don't run around the fire.

Matthew: Don't throw toys around the fire.

(can you tell who throws a lot of toys?)

Ryan: Don't accidentally pick up the fire pit and throw it through the kitchen window.

Gotta love the mind of a 4 year old. :)

Have a wonderful weekend everyone!

Perspective

I can’t believe Matthew is one year post-op today. Here is where you can find out more about his surgery. While we waited for hours in the waiting room, I was visualizing where he would be a year later. It is kind of a bitter sweet day. I had thought that by now the curvature in his foot would be corrected and that he would be able to hold his foot in neutral. And the biggest wish, I had hoped he would have a heel strike when he walked. So, here we are at a year and his foot is still curved, he does not have a heel strike, and he is facing more surgery within the next 6-10 months.

I have to keep reminding myself. His foot will never be normal, but it can be better. If I stop comparing him to regular kids and start comparing him to him, things seem better. Here is what I mean. The following photos were taken a year apart. There is a lot of improvement.

Jan 2008


Jan 2009


See, better. Not normal, but better. Also, you can see where I got the title for this blog in that last pic. His foot is now a good 2 sizes smaller then the other.

Jan 2008 he could not put his foot flat on the ground


Jan 2009 darn close to flat!


Jan 2008


Jan 2009 not much improvement and his calf muscle is even smaller then ever


Now for the best part. He is able to move his foot to neutral and hold it there. Well, not quite neutral. But he can move it upwards and hold it. Something he has never been able to do before.


So, after a year of surgery, botoxing, casting, AFO's, physio, and most importantly running, playing and being a kid, we have success. Matthew teaches me new meaning to that word every day. This journey that we are on is still long but I have no doubt that this little foot will take him where ever he can dream.

An award?!

Look what my blogy friend Tara at Kidz gave me! My first blog award! How sweet. :) I posted it over there --->
And if you haven't already taken a peek at her site, pop on by, it is so inspirational, worth a daily look.

So.... I am so new at blogging that I am not even sure I did that right. lol

What a day!

We have been having the most beautiful weather these days! Had to take advantage of it and got out to the mountains, did some inner city geocaching as well as cooked hot dogs on the fire pit in the back yard last night. I don't know what it is but I love the fire. Somehow it restores the soul. I could stare into it for hours.


Here are the boys enjoying their hot dogs by the fire. Gosh I miss the days when they smiled sweetly for the camera.


Matthew by the fire


Ryan by the fire - no, he is not normally so leary of the fire


And a shot of our poor melting snowman. Yes, his head has fallen off and rolled away.

We're here

We have started a new family tradition on Friday nights. We plan a family dinner that the boys can help make, then we take it down into the family room in the basement and eat in front of the tv while watching a movie of the kid's choice. All four of us are loving this night of family time.

On Friday, we made homemade pizza and watched Wall-E...again. lol After the pizza, Matthew curled up in my lap and Ryan did the same in Daddy's lap. I happened to look over at Ryan and Daddy and got this overwhelming feeling of We are here, we are finally here! It was warm and peaceful and the most wonderful moment.

For those of you who don't know, we tried for 3 years to have a baby. Two of those years were spent with a fertility specialist in testing, treatments, medications and procedures. We lost 3 little angels along the way. We were devastated and had decided that we were just about ready to give up completely. We had circled a date on the calender that was the end of our journey. From that moment on, we focused our energy and thoughts on that elusive family. It was in that time that Matthew was conceived from our 5th IUI. It was a rocky pregnancy, but in the end we were blessed with the most beautiful little baby.

4 days old

one month old


Then, to all of the doctor's surprise, I ended up getting pregnant naturally when Matthew was only 8 months old. Along came miracle #2 before Matthew was even 16 m old.

Fresh from the cooker

First day home


There was a time when I thought it was never going to happen. I was about ready to throw in the towel, to abandon the thought that a family would ever happen. And in our busy daily grind, I often forget that our family was blessed not by one but two miracles. How many people can say they are that blessed?

My two miracles


Day to day gets busy for everyone. I find it hard to be in the moment sometimes, well many times. Seems that I get so caught up in life, school, hospital visits, AFO adjustments, physio, and everything else that I forget where we are. But sometimes, if we stop and look around, we can be in the moment. What a truly wonderful place to be. Here.

Look what I found!

I was digging through the bench looking for mitts when I found WAY in the back Matthew's very first AFO. K, I know that most people get all teary when they see their little ones first shoes but clubfoot mommies, their first shoes are not cute. This first AFO though is to me. So tiny and so cute! I don't remember how old he was, but somewhere around 2.

Here it is up against his latest one for size comparison. Awwwwww!


And you can see it had a lot of modifications (toe extensions) to keep him wearing it as long as possible.

So then I had to start digging around and look what I found in his closet!


That pile represents about $12 000 in AFO's alone. Wow. And I thought little girls would cost a lot in shoes. lol

Here is a better view of it


That is only a fraction of the casts that I allowed him to keep. I lost count at the number of casts he wore before he turned 3 months old. One time, when we were at the orthopedic clinic for a cast change after his surgery, a little boy said to Matthew "this is my 4th cast. How many have you had?" I honestly couldn't even guess anymore.

That said, this one is my favorite.


It was brand new and Matthew was crying for two days over it. Finally, he asked me for a bandaid and he stuck it on the cast and said it hurt. I took him in, they zipped the cast off and sure enough, exactly where the bandaid had been was a huge pressure sore. Poor kid. From that day on, I listened to exactly what he had to say about the comfort of his casts.

Anyways, it has been a walk down memory lane today, but I need to go and finish cleaning out the bench and find those mitts! Have a happy Friday and a wonderful weekend everyone!

Positive thoughts

I truly believe that if you look for the positives in life, that is what you will find. If you focus on the negatives, that is where you will be. So with that thought, here is what has been positive around here this week.

1. We saw Matthew's orthotist for adjustments ordered by his surgeon. After the adjustments, his boots and shoes are easier to put on. And the best news, it now fits in his indoor soccer shoe! Yay!!

2. We saw his physiotherapist for a session. She said he was very tight but loosened up after working with him. She was impressed with his ability to jump 8 times in a row on his foot. He can do better then that too. Yay!!

3. Matthew had his second swim lesson this week. This time, instead of sitting with me and crying, he joined immediately and even chatted with two other boys in the class. Then after leaving the pool he asked when he could go again. Yay!!

These may seem like small insignificant things in many people's lives, but in our home, we take these small steps and embrace them. For every small step adds up to a large leap. I have to keep that in perspective.

This has been a great week. :)

The new AFO

I just realized that I have been raving about Matthew's latest AFO but have not shared any photos of it!

The old design


The new design




You can see there is no joint (articulation) and that is is not perfectly straight but it is straighter then we thought possible thanks to the most wonderful orthotist!

Happy New Year!

Happy New Year everyone! I took a break from the computer over the holiday but am back now that I have a few hours to myself every week again. Pure bliss I tell ya!

I noticed I have a few more followers so I wanted to say Hi to them! Some of you are leaving wonderful comments for me on facebook or my personal email which I enjoy but also, feel free to leave comments here whenever you wish. You never know who's heart you will touch with your words.

So what is new here? Matthew saw his surgeon just before Christmas. He is generally happy with the newest AFO but as always, he is asking for adjustments. So off to the orthotist we go. One thing he did say was that he didn't think he has ever seen Matthew walk so straight before. Of course that was WITH the AFO. Again, as always, once the AFO is off, it is a different story. Dr. K even said to the resident "he still has the foot drop" which I immediately jumped on and said "does that mean at some point he could walk with a heel strike?!"

You could tell Dr K either forgot he said that outloud, or forgot that this is a mom who speaks up. The look on his face was slight embarassment. He said with the most compassionate look "it is too soon to tell" I guess I could take that two ways, I prefer to take it the positive way. :)

What else is new here? We took the boys to Banff over the holidays to see the 'castle'. It was a lot of fun exploring.

The castle all decorated

in front of one of the big trees

The best part was watching the boys race through the quiet ballrooms. I suppose that we should have told them not to run, but as many of you who know me realize, I don't always follow the rules. ;)

You see, the boys were running all out... and finally, after almost one year post-op, Matthew won every race. And in true Matthew style, he didn't gloat, just took it all in as the way life is. Warms the heart. What a way to start the new year.

A fellow blogger suggested an idea to come up with one word that describes what you want for yourself in 2009. (From tip junkie ) I thought immediately of the word Believe. So powerful. 2009 will be a year of wonderous things if I believe it.