Another Day, Another Toe Strap

I know I wasn't blogging but believe me, this happened about 2 or 3 months ago.

Another blown toe strap.  I like it when we blow an ankle strap.  I have a bunch of those in my drawer.  Just remove the old one, replace with the new one.  Problem with the toe strap is it needed more anchoring then the other straps.  It is anchored with two rivets.  Why?  Because of this.  When we blow a toe strap, it means I need to take it to the orthotist, leave it a day, then go and get it again.

Yet another reason why I am so thankful I am not working.  Guess where I am going tomorrow.

The Elephant In The Room

I haven't been posting. Many reasons. Some easy, some not.

But I need to post about the elephant.

Funny, everyone I know keeps telling me how great his foot looks.

I've told Steve my thoughts. I am sure he thinks I am nuts. That's ok. Isn't the first time. Won't be the last.

I see bad things in Matthew's foot.

He is getting a huge callous on the inside of his left heel. Very odd place to get a callous.

I mentioned this weeks ago to Steve. Being the wonderful ever half full kind of guy he is, said 'maybe he is walking and placing pressure on the inside of his foot.'

Not so odd a statement. E-stim has been doing some amazing things as seen by some previous posts. And, honestly, his mobility in that foot has been really good. Why would I question things?

There are some things that can't lie. The shoe is one. A few months ago, I had to buy all new shoes. They are now worn on the outside. And looking inside, they are torn up on the outside.

What does that mean? In my mind, all bad things.

Today I told Steve (out of ear shot of Matthew) that I was concerned that because of his osteotomy, that bone was being laid down, and causing issues. He said he would take a look and let me know.

His thoughts after were good. (Did I mention that I love Steve?) He doesn't feel any rough boney spots. No tenderness. Felt that his foot felt good mobility wise. Thought that his outward movement was the best ever.

Yay!

But here comes that elephant. If everything is wonderful, why the callous, why the walking on the outside of his foot? I mean, it is not an occasional thing. He is ALWAYS on the outside of that foot. I know, I am the MOM. I will see things there, not there, and almost there. I am concerned. And I am seeing things that shouldn't be.

Matthew's next appointment with Dr Dobbs is June 27. He is due for x-rays to check for leg length discrepancy. I will be asking for an x-ray of his heel.

Looking for that elephant.

My Lucky Day

It must have been my lucky day or maybe even week.

I took the shoes with the blue sole to see my guy Tony. Wanted to know if he had that color.

**small world, while I was there, Steve (Matthew's p/t) was there too. Chatted for a few minutes. Seems he now has another clubfoot boy (5 yrs) and was asking me some names, numbers for AFO's and such. Small world, or perhaps the way the world works...

Tony was out for a bit but the guy at the counter told me they could NOT do that shoe. They did NOT have blue.

Crap.

As I was walking out, in walked Tony. I showed him the shoe and told him what I wanted. Not even through the front door yet, he took the shoe and started walking to his work area.

And my man Tony said, "Of course we can do this shoe. I will cut the black part of the bottom off, and put a black lift on. It will look great."

Yay Tony!

Thankfully I chatted with Steve long enough for Tony to get back. Like I said, is it a small world, or just the mysterious way the world works? Had Steve not been there, I would have taken the other man's opinion and returned those shoes...

So, off to school to get the boys. Then down to the shoe store to measure his feet. Yup, I had the right size. Yay me!

I dropped the two left shoes off at Tony's to have the 1/2 inch lift put in. And the other great news? He thinks they will be done by tomorrow!

Talk about luck! But no, I am not going to buy a lottery ticket. I think I have just used up all my luck for the next week...maybe month!

Shoe Shopping

I love shopping for shoes... for me.

Matthew said to me last week, "Mommy, my shoes hurt."

Sure enough, he has grown out of all of his shoes.

For those of you who have been around this blog for awhile, you know that shopping for shoes for Matthew is never fun. There are so many criteria to meet for his shoes...

So, yesterday, off I went to the shoe store, AFO in hand, child in school, searching for the next size up. (Did I mention he is out of his AFO yet again with another blister? Will need to address that once this blister heals.)

Why do I go without said child to the shoe store? Honestly, it is easier. Because there are so many criteria, the number of shoes to try is limited. And it breaks my heart to watch him find a pair that he loves only to tell him, no, they will never work for you. So, I go to the store, try the brace in as many shoes that work, then buy what I can. Then, he can try that selection on at home. Less disappointment that way.

The criteria while at the store?

1. Must be non-marking.

2. Must have a sole made from a material that can be split and have a lift inserted. That means the sole has to be wide enough, and can't go up in the arch like so many shoes do these days. Oh and color... if there are multiple colors, then the lift will be very noticeable. And that is not cool.

3. His AFO must fit in it.

4. I try to keep the shoe under $40 seeing the lift that is added is $50. That makes each pair of shoes $90 or less.

Yesterday, I walked into a sale and I had a coupon! Woohooo!

This is what I walked out with.


That was a good shopping day!

Once the boys were home, I had Matthew try on all the shoes. Of course, he has his own criteria.

1. Must look cool.

2. Must fit his right foot.

Out of five pairs, two fit...kind of. It seems one size up may not be enough. I will have to get two sizes bigger and see if that is better.

Oh, and of those two pair that kind of fit, one has a sole that is a funky blue color. Matthew loves that. Tony (my shoe guy) may not be able to match it.

At least one pair may work.

Today, back to the shoe store to return 3 pair and buy 2 other pair. And stop by Tony to see if he can match the sole color. Then back home to see if those shoes work. Then return what doesn't, and have a lift put in to hopefully two (indoor and outdoor) pair.

I hate shoe shopping.

Back In The Saddle

Or AFO I should say.

Yesterday Matthew wore his AFO all day. Yay! Guess the cut on his ankle was the culprit.

He also had physio yesterday. Steve is still pleased with his dorsiflextion, mainly focusing on his forefront drift (Metatarsus adductus).

So, for the time being, things are back to normal...what ever that means.

Curses

On Monday, while skating, Matthew got a rub mark that turned into a bloody mess on his ankle from skating.

On Tuesday, he came home from school with his AFO in his backpack rather then on his foot. It hurt.

Understandable.

Now, he has been out of his AFO for two more days.

Will try again tomorrow to see if he can wear it again. Hoping his cut on his ankle is the reason he is out of the AFO. If not, then it is back to the orthotist we go.

Curses.

Family Day Skate

Yesterday was Family Day, a holiday for many Albertans including Craig for once. Actually, he had Presidents day off, not Family Day. But it doesn't matter, we were all home together.

All four of us have been sick but yesterday we thought we felt good enough to do something. Why not a family skate? So off to an indoor rink we went.

Everyone had a great time, the boys laughing at me for my slow skating. Hey, I have my first pair of skates in about 20 years, and that ice is much harder at 42 then it ever was at 12. Speed is not my goal at the moment.

The boys are improving. They played tag with Daddy while I practiced not falling.

At one point, I skated up to Matthew, who had fallen again. His pants were soaked from falling. I asked him if he was having a fun time.

"This is GREAT Mommy!" he said as he hopped up and skated away.

I watched him skate. It isn't the prettiest sight. His left foot is not strong and wobbles terribly without his AFO. He tried to skate with mostly his right. And he spends a lot of time on his butt. But that doesn't matter to him. What matters is he can go faster then Mommy and it is a lot of fun.

And you know what? That is all that matters to me too. I know he will never be a Gretzky. That's not what I want. His name isn't Wayne, his name is Matthew.

And he is a great one.

Are You Ready For Some Football?

Over a year ago, Matthew came to me and said

"Mommy, I want to play football."

Maybe to many families of boys that doesn't come as a complete surprise. They see their dads watching football, maybe the superbowl, they play football with their buddies, or toss the ball around with their dads from the time they could walk.

Not here. We don't watch sports on tv apart from a bit of CFL (Go Riders!) when we are around. Daddy here never played football, or baseball, just a bit of hockey. And for me, well, I can barely throw a football without embarrassing myself.

So you can imagine our surprise when Matthew decided football was going to be his sport of choice. I looked into it and found a great organization for football, but it started at age 8. I told him he had to wait a year, and in the meantime, did he even know what football was?

So, out in the yard he went last spring, picked up a football we had and tossed it. I have to say, I was shocked. It was a perfect spiral, and he could chuck that thing far. Since then, he has tossed a football around while camping, at grandma and grandpa's house, and with our friends. "that's quite an arm he has" is something we have heard quite a few times.

So, now that he is 8, I signed him up. Season starts in August.

Now I'm not the kind of mom who thinks her kids are superstars but I am very excited for football season. Maybe it is because I've seen where he has come from. I've seen him struggle with pain, with AFO's, with tripping, endless physio, surgeries, e-stim, with a foot that won't do what it is supposed to do. Just yesterday, we were at the outdoor rink in our neighborhood. He sat down on the ice, mad. I asked what was wrong and he said "Mommy! It isn't easy to skate for a kid with a clubfoot!" I told him that no, it isn't as easy for him as it is for others but that just meant that if he wants it he has to try even harder to do it. He sat for a minute, stewing, then got up and skated, played tag and even tried a hockey stick without another word.

Thanks to many people, this kid is going to play football. Something I never thought he would do. And I get to watch it all, with a smile on my face, and maybe a few quiet tears of joy.

So, are you ready for some football?

One Step Forward, Two Steps Back - Revisited

Last week, Matthew went back to his orthotist and had the toe strap on his AFO adjusted. Finally, success! He is able to put it on in the morning, wear it all day at school and walk home from school with no problems. Yay!

And the back steps...

Matthew's tonsils looked horrid on Friday. Took him to the doctor again on Saturday. No fever. No white spots on the tonsils. No hint at all that a bacterial infection was there other then it had been 10+ days since the last doctor's appointment and some mild fluid build up in his ear. Because of that, he was given yet another round of antibiotics.

That evening, the sore throat started. By bedtime, he had three doses of antibiotics. I thought for sure by Sunday evening, he would be right as rain.

I was wrong.

It is now Tuesday and he is just starting to get better. His mouth and throat starting Sunday was bright red covered with white. His throat so sore he couldn't eat or drink.

And to add insult to injury, he is getting his last molars. All four are trying to push through.

Poor kid.

Maybe next week will be his week.

Back To The Orthotist We Go

I was hoping I had the toe strap on too tight. Nope. The angle is off and needs to be adjusted, again.

So it is back to the orthotist again. And yet another absence from school.

One of these days this thing will fit...and then he will have a growth spurt and need a new one. Isn't that the way it is supposed to go?

One Step Forward, Two Steps Back

Good news at the doctor's appointment yesterday. Yes his tonsils are swollen, but no signs of a bacterial infection. Looks like he is just fighting your every day virus.

She gave us yet another idea to help him out. NeilMed (Yes, Jenn, this is the pediatric version of the NetiPot) Tried it last night and his nose was clear. The best news, still clear this morning. Yay!

Also started him on Vit D. The doctor was saying that a huge percentage of the population (especially in the northern latitudes) are Vit D deficient. New studies are showing that to get your allotted Vit D from sun, you need to spend 20 min in the sun with a UV index of 7 or higher...naked. I asked Matthew if he was interested in doing recess naked from now on. No go. So I bought some Vit D as well. Did a bit of research and a lack in Vit D can cause low energy and fatigue, and lowered immunity. Maybe that is why he keeps getting sick. Can't hurt.

And the bad news. The toe strap hurts. I am hoping that maybe it was just on to tight yesterday. If not, then it is back to the orthotist we go...again. That will make 3 times in less then 2 weeks. One day this AFO will fit right...one day.

Hi Ho, Hi Ho

It's off to the orthotist I go...again.

When we were in St. Louis last month, they decided to add a toe strap to try and stop Matthew's toes from drifting over. Simple concept, should work.


Problem is, the strap keeps slipping to this position.



Then his toe peaks out and the strap is useless. Went to the orthotist last week to try to add some velcro to see if we could hold the toe strap in better position, as well as adding more padding to stop his ankle from getting blisters.

Didn't work.

Back to the orthotist I go. This is what we are trying now.


Hoping this does the trick.

Excuse Me, Have You Seen My Head?

Wow. I have been running around like a chicken with my head cut off these days. Just realized how long it has been since I had time to blog. Not that I even have time right now...

What's up around here? Well, the most exciting news is we are taking the boys to Disneyworld next week. So I have been planning and getting ready for that. Let me tell you, either there is way too much to do there, or I over plan way too much. Suffice it to say I have been very very busy with that. Excited, but very busy.

Also been trying and trying to get Matthew's latest AFO to fit properly. Any of you with kids in an AFO know what I mean. You take your kid out of school for an appointment, the AFO gets adjusted, he wears it a day or two and says it bothers him elsewhere. So you make another appointment, take him out of school, get the AFO adjusted...etc. Sort of like Groundhog Day. Still stuck, still trying...

Also have our next appointment for St. Louis. We are heading back in December.

Been dealing with a not so fun problem with Ryan. I think he actually has a medical problem called Encopresis. Things have been getting worse lately so I am trying to get him in to see a specialist. Our GP was not forthcoming with the referral so after some research, I am going back in and getting the referral I want. This kid has had pooping problems since the beginning including 18 months of diarrhea (yes, you read that right 18 long long months). We need to see this doctor.

And Craig leaves tomorrow for a hunting trip. So, that means I get to pack up everything for the boys and myself for the vacation as well as get them to Disney by myself, Craig will meet us there 24 hours later.

Along with regular life and volunteering in the school twice a week has pushed me beyond my limits and time constraints. And as I say that, I have to run and get the boys from school, take them to their hair appointments and then run home to make dinner.

Hope to have some good news about Ryan soon, at least good news in that I will be taking him in to see a doctor that specializes in this condition.

Like A Fish To Water

That's how Matthew has taken to daily home E-stim. In fact, the other day, he even asked for the "tinglies". Never a fight. Ever.

I should be high-fiving, and yet I'm not. I am worried that his motivation behind this is to get rid of his AFO. That he hopes by doing this, soon, his foot will work and he can get rid of the brace.

Which, is exactly what I hope for too.

And I worry, that if it doesn't, he will stop wanting to do E-stim.

Guess all we can do is take it one day at a time.

And hope. Always hope.

Complete 180

Yesterday I was frustrated and confused. So I sent a message last night to Dr. Dobbs and his nurse coordinator Kristina Porter. Told them that Matthew's AFO was bothering him and where. Told them that he has been doing E-stim and that Steve felt Matthew was gaining some slight movement in his toes.

I had a response less then 12 hours later. I can not express how thankful I am to have found this amazing team. They work so hard for all their patients at all times.

They discussed things and gave me some new ideas to take to Matthew's orthotist to work with this AFO.

And the best part, Dr. Dobbs feels that daily E-stim could help and could we get a hold of some equipment for home? Maybe it is the sun shining this morning. Maybe it is the beautiful deep blue fall sky this morning. But I got goose bumps reading that. Maybe, just maybe this is another sign of things moving forward.

For so long we have been stuck in the same treatment for Matthew. Finally, we are off the loop track and walking down the road. It is going to be a long road, but today, it is a beautiful view.

Frustrated And Confused

Since school started, I have been trying to get Matthew to wear his new brace. He goes to school with it, but it is always off by recess time (2 hours later). I can see where it is bothering him. Have taken him in to our orthotist to try and have it adjusted, but the adjustments that can be made are not helping.

The new brace was made straighter and higher at the toe to try and stop the front of his foot from turning in. I completely agree with that.

Comparison of old AFO and new AFO.

But that is where the new AFO is bothering him. You can see how his foot turns right at that spot.

Braced.

Unbraced.

So, the part of his AFO that is to keep his foot from turning, is causing him to remove and not wear his AFO...which will lead to more turning of his foot. Arrrggghhhh!

Simple solution, cut the AFO down at that foot part. But, the purpose of this AFO was to try and stop that foot from turning.

Round and round we go.

I am going to send an email to Dr. Dobbs and Kristina this evening. See what their thoughts are. We don't go back to St. Louis until December.

In the meantime, he has been happily wearing his old AFO.

Oh, and another update...Ryan's eye. A real beauty in the works.

Just In Time

Matthew's foot is healing nicely. Steve took a look and thought it was a minor sprain. Hooked him up to TENS on his foot and E-Stim on his lower leg. Told him to be nice to his foot. He is back in his old brace too. Not sure if the new brace is ever going to work, but that is another story for another day.

So Matthew's foot is feeling a lot better, just in time for winter boot shopping. Let me try to contain my excitement.

Not Broken

Those were the two best words I heard this weekend.

Matthew rolled on his foot. With all the changes with shoes, he has not been wearing his brace and he rolled on his foot. Two days later he was still not putting weight on it so I took him to urgent care.

They were very concerned by the look and shape of his foot until I explained all that has gone on with that little foot. They decided to X-ray both feet to have something to compare.

Good news, there are no fractures that they could see. So most likely a soft tissue injury. He is now in a tensor and back on crutches.

Will be taking him to his regular doctor Monday to have it checked (as per urgent care doctor's advice) and will have Steve take a look on Wednesday to see if he can give us some more information.

Hoping he is off the crutches for school.

Could It Be That Easy?

After spending most of the morning yesterday scouring four different stores, I was able to find 3 pairs of shoes that were non-marking, fit Matthew's brace and could have the sole split. One pair is $68. After adding the lift price to that, they would come to $118. YIKES! The other two pairs were $10 off the clearance rack. But they were not the nicest looking shoes. But, one of the $10 pair fit with his brace AND with his foot. For those of you without AFO's, sometimes a brace will fit in the shoe, but not with the foot in the brace. Hence the three pairs. (Oh, and I hid the expensive pair only to be pulled out if absolutely needed.)

I had a conversation with Matthew's teacher who was so nice. She apologized about even having to mention this and told me (after she found out about the brace and lift) not to worry about it. I told her that having been a teacher, I understood the issue and not to worry, it would all work out.

Then, I looked at Matthew's outdoor shoes. I tried to get them to mark my kitchen floor... my poor floor...nothing. Hmmmmm. Could I just switch his indoor shoes for his outdoor shoes?

I sent them this morning with a note to his teacher to let me know if these shoes mark the floor.

Could it really be that easy? Maybe I should buy a lotto ticket.

Crash

Did anyone hear that? That loud crash a few hours ago? That was my train...coming off the track. Just when I thought I had everything under control.

I got an email from Matthew's teacher after coming home from Matthew's physio appointment.

I hate to request this because I know they are brand new shoes, but unfortunately Matthew’s shoes are leaving black marks all over the floor and our caretaker is feeling a bit out of sorts about it. I was wondering if he has a pair of shoes with white soles at home instead that he can use at school?

Thank you

Crap.

I thought I had it. I was so excited to have two pair of shoes that could have a lift put in, fit the brace, and Matthew liked. Forgot the last parameter. Marking the gym floor.

Crap.

Guess I know what my day is tomorrow. Off to the shoe stores. Find a pair of shoes that fits his brace, has a sole that can be split, and is non-marking. Oh... and that the kid likes, at least some what.

Wish me luck.