Hope...

Matthew has been doing well with his newest AFO. I was worried at first that he was going to need some adjustments, but it seems to be going better then I expected.

Today, he wore his AFO for 5 hours. I noticed he was hopping on his right foot and asked him if his foot hurt. He said, yes. I said, let's go take your AFO off then, but you have to take your sock off and show me where it hurts. With his sock off, I can see any blisters or rub marks. Helps me narrow down what is going on, and where adjustments are needed.

So he took it off and pointed to his long scar on his instep. It is not a spot where an edge touches. I was puzzled and said, really? He said, yes Mommy, but really deep.

Ohhhhhhhh.

Ever have one of those moments where everything stops for a split second? I had one.

What does that mean? I am not sure, I am not a dr, or a p/t, or an orthotist... but to me that meant that his foot was sore from being stretched into a straighter position. Which is the goal.

So, bad mommy here, but I am thrilled that he hurts. It means that for the first time in a long time, his foot was stretched into the proper position for 5 hours.

Don't get me wrong, his foot is still not in nuetral. He will still need the next surgery sooner then anyone had anticipated. But maybe, just maybe, this latest AFO will keep his foot loose enough that he can go farther with the next step.

I can only hope that this is the turn we have been praying for.

Lessons

Matthew had soccer again last night. As I said before, his newest AFO does not fit in his indoor soccer shoe so we decided to let him go without it for that hour.

Seems like such a short period of time, but right now he is adjusting to the new AFO so he is not wearing it longer then a few hours. And it needs adjusting. Will need to call and make an appt with Ken. It is on my To Do List.

So, back to soccer. Last night, Matthew ran onto the field and only stopped when he had to. It was a joy to watch, and horrifying to watch. I found I kept watching his foot. It was awful. He was running full out on the side of his shoe and his ankle kept leaning farther and farther over. Honestly, it gave me a sick feeling in my stomach.

Half way through, I couldn;t watch anymore so I decided to watch only the top half of him. What a difference. He was so happy, smiling, laughing, running. He was a little boy having a great time.

When he came off, his coach came over and commented on how fast and how much running he was doing. Matthew was beaming. But I think that was because he won British Bulldog. He was the last one standing and the coach had the team clap for him. I thought Matthew's face would split open from that grin.

So what did I learn? I need to focus on his foot, but sometimes, even for a short period of time, I need to forget about it...just as he does.

Small steps

Matthew had physio yesterday. I think we are both going to learn to hate physio. I know she needs to get every joint as mobile as possible and to stretch all those muscles in order to get his foot to straighten, but man it is hard on him. And she could not believe how much tighter he is this week.

It hurts, a lot. He gets 15 min of heat, then at least 15 min of painful stretching. He doesn't cry, but he is pulls away, pushes her hands away, and can not be distracted with books or stories. Then, depending on time, he gets exercises that also stretch.

I hope that in time it will get easier as things loosen up.

I hope in time things will loosen up.

After physio we saw Ken.

Ken. Funny, I never thought I would get so attached to one of Matthew's caregivers. I joke that I am in love with him. Actually, I am in awe of him. He is one of those rare people who stepped into Matthew's life 4 yrs ago and formed a strong bond immediately with him. He is amazing with Matthew and it seems so effortless. We are so blessed to have found him and to be able to continue to have him work with Matthew.

Ken has made a stir up AFO for Matthew this time. It is very different from all the others that Matthew has had. Ken told me he doesn't normally make this kind for kids so he is unsure of how it will go. In fact, he wants Matthew to see his surgeon asap to check that it is doing what it should. (Yay, another appt)

So Matthew put it on and walked up and down the hall while Ken and I watched. His first few passes were not very good. Ken even asked me if he normally had 'insert some technical term for unusual gait here' when walking. I said no. My stomache dropped.

After a few more passes, and after finding Ken's toy stash, Matthew's gait improved. In a matter of minutes, he was walking straighter then I had seen since coming out of his cast.

I said that to Ken and he agreed with a big grin on his face. He was impressed to. Now THAT feels good. We have had a lot of negative comments lately. His foot is too tight, his foot is twisted, his foot is regressing, etc. What a breath of fresh air, finally.

Matthew tried running. Not good. He will need to relearn how to run with this new one. Ken figured it would just take some time, but to watch it and if there is no improvement, to come back in for modifications.

So, we are now in the watching mode. If Matthew gets any red marks, any pain, any sores, any blisters, we go back in for adjustments. I really don't like this part of a new AFO. So many appts. But, seeing him walk straight for the first time in months helps. More then I can say.

And, no, it does NOT fit in his soccer shoe. But it fits in his winter boot...

Even the small steps are still steps.

Gold Medal

Last week, Matthew's physio therapist wanted me to get him a wedge to stretch. She told me to go to Fitter's, they would be able to direct me to what I needed.

Apparently not.

I found out when we saw her that I had bought the wrong thing. She wrote out in detail what I needed and told me that they would gladly take back what I had purchased. I had a heavy sigh... another trip. Fitter is rather far from me. But seriously, when it comes to our kids, does it matter how far we need to drive?

We made the trek on Saturday. The boys hit the store and had a ball. This is one cool store. I waited patiently for the family in front of us to finish to get service. They were buying their son (about 6 or 7) a wobble board to help with balance so he could become an awesome skateboarder.

K, bad person moment.

I thought MAN!! I want to be them! I want to be there buying something for my kid to enhance his skills so he can rock his buddies at the skateboard park! Instead, I am here buying something to try to slow the regression on my kid's foot to hold off more surgery as long as possible.

I thought some bad words.
But only for a moment.

Then it was my turn. I chatted with the young kid (maybe 20...k, I'm old... that is young) and gave him the specs of what I was looking for. He asked me what I needed it for. I gave him the short version. He seemed unfazed, dug out the item and I called Matthew over. Took off his shoe and had him try it, see if he could use it. Seemed ok, I asked if I could return this too if it turned out to be the wrong thing. He said of course.

He took me to the till to return the first and get the second. Matthew and Ryan and another kid started to play on some of the equipment. The young kid who helped me (another young one was at the til) started to comment on Matthew. He was shocked at how turned Matthew's foot was and was asking me his prognosis. I told him about his surgery last Jan and that he needs more. The guy who was at the til was listening and interested. He looked at the three boys playing. He asked which kid we were talking about. The other guy told him. The til guy looked again and commented... really? The first one said 'yeah, his foot is really twisted'

K, that never feels good. To have some 20 yr old kid be able to see the mess that is Matthew's foot. But for some reason, today, I felt so proud. In fact, I was able for a moment to glimpse into the heart of a mom who's child had just one a gold medal, because that is how I felt. I know, silly. The kids were just jumping around on equipment, but what a win to have some 20 yr old kid not be able to tell that he had a huge problem hiding under his pant leg.

Years ago, a wise teacher told me to take all successes as a teacher and put them on your trophy shelf. Then when you are having a bad day, sit back and look at that shelf and see that you are in fact making a difference. It was powerful to me.

I will put Matthew impressing a 20 yr old kid on his trophy shelf. That one is surely worth a gold medal.

That grin

Matthew had soccer tonight. I was worried about him running without his AFO. Thought he would trip and hurt himself on that indoor soccer surface.

Some days I need to give my head a shake. Did I really think that? Why?

He entered the gate of the field at a run, sprinted as fast as he could to the other side, put his water bottle up, got a ball and took off. During the game, he ran his heart out with a grin on his face the whole time. He kept up with them all and even took the ball away from the other team time and time again.

But his foot looked terrible. His foot was turned in and he was running on the side of it. And when he was walking, his ankle would roll every step.

But that was me seeing it. He didn't see it that way. Neither did his coach. Matthew took a ball to the face near the end. The whole crowd of parents gave a collective groan. The coach walked him off as I was making my way to him. He had a few tears, but was ok within minutes. His coach said 'he is just flying out there!' I mentioned, yes and even without his AFO. His coach had to do a double take and realized he was not wearing it.

It makes me feel good to realize that I do see more then most people. Maybe no other parent saw his odd gait, his terry fox hop. Maybe they never made it past that grin on the kid who was flying around the field.

Funny how things go

Funny how things go...

I guess there was a need for me to be strong starting today. Matthew started physio again today. She was very aggressive in joint mobility. She called it wiggling, but it was movement/stretching in all joints. She commented on how strong willed and brave Matthew was. He counted to 30 every wiggle of every joint with her and never cried until it was all over and he was getting his jacket on.

Broke my heart when he begged me to not have to go back again. I had to tell him sorry, but we have to and we have to do it twice a week. Poor kid.

That said, he is now home, had a halloween treat and is calm and looking forward to soccer tonight. Phew. Til the next time...

ROAR!!

Got a call yesterday at 8:10 in the morning. Ken's office wanted to see Matthew before noon. So, I changed all of my plans and had to pick him up early from school so he wouldn't see his buddies sliding on the hill. I was not popular so I bribed him with a trip to Burger King after for lunch. Yes. I bribe. No, I do not want to debate it. If it makes me a crappy mom, then so be it. Sometimes you need to do what you gotta do.

Got there and Ken had the start of his new AFO but was unsure of what to do next. He casted Matthew's foot so he has a mold of his leg/foot from the knee down, but he said he wasn;t trusting those measurements and wanted to see his foot to measure, to manipulate and to ask me some questions.

Have I ever told you how much I love Ken? My hubby knows too

So we got to see the new AFO as it is so far. It has batman all over it which Matthew loves. Not even sure if I can call it an AFO anymore. It has no joint in it this time. We decided collectively that the joint was not working, even his surgeon agreed. And it is called a stir-up. And it will have some sort of intricate strapping system.

I just hope it fits in at least his soccer shoes.

And his winter boots.

The rest I can replace. Again.

After we left Ken's, we went to Burger King where we met up with someone from the boys' school. The three of them played and I chatted with the mom. Her son has PUF funding as well and we had a fantastic conversation about what it is like to have a child with special concerns and numerous appts and no straight journey to a definite finish line. It was refreshing to hear someone speak the words I have felt but not said.

I decided then I need to start a group for us moms so we can vent and be real about it all. Will have to get that going soon. After Matthew's bday.

And about me. I am finally feeling like my old self. Maybe not exactly the same. Maybe that is too much to ask for. I still am in tears at the drop of a hat, but I feel strong again. Like I can take this on and do this. I need to... so that Matthew can be strong. I think we feed off of each other. When we are both strong, we take on the world, when we are down, the world takes us. And we are not going to let the world take us. NEVER.

Can you hear me roar?

A new AFO

Long day yesterday.

Took Matthew in to see his orthotist Ken. Have I ever mentioned I love Ken?

Ken was very quiet. Looked at the new prescription, looked at Matthew's foot, had him walk, looked at the prescription, looked at the broken AFO, then said he had to go think, and left. He came back awhile later and said he was consulting with 2 other techs in the back who followed him in. They all examined Matthew, his AFO, and conferred, called Matthew's surgeon, then conferred again. When all was said and done, we had been there 1 1/2 hours.

He has decided to do something different in order to try and stop his foot from regressing so quickly. No guarrentees but it sure is nice to see someone take the time to try and solve a problem.

And again, in the end, he had Matthew go online with him and special ordered a batman pattern for his new AFO. It won't be arriving for 2 weeks so that means 3 weeks without an AFO. Yikes. Not a good thing.

I got home and called the physiotherapist from Matthew's school to try and set stuff up. She now has him on the short list (because he is still less then a yr post-op) for Alberta funding for physio. He could get it by Jan. Hubby's plan allows for some funding so we will exhaust that for now. She will start seeing him next week.

She also recommended getting him a wedge. So after more phone calls back and forth to a store that has what I need and numerous calls back and forth to Ken's office, we went out and got his wedge.

Maybe it is because we now have a plan, maybe it is because the boys are finally back at school, maybe it is because I was able to get out with good friends last night and laugh, but I am feeling stronger today. The first of many steps forward on a long journey.

Some days are harder then others

We went geocaching today. Normally a day that the boys love. The first cache was just shy of 1 Km hike in along a river, no elevation. Weather was picture perfect. Matthew, who normally runs ahead was behind dragging. By the time we got to the cache, he was grumbling. So unlike him.

When we turned around to walk back, he begged to be carried. Sobbed. His foot hurt.

We made him walk it. Maybe that seems extreme. Like really bad parents, cruel, hateful. But even 5 months post surgery, he was able to do 4 km. But, that was with an AFO. I never realized just how much his AFO supports him.

It was so hard to see him struggle with what should have been a fun and easy day.

We go on Wednesday to see Ken, his orthotist. It was the earlist possible appt for him. He will be casted so Ken can make a new AFO for him. His first ever that is 10 degrees off neutral. Makes me sick to my stomach. For the first time ever, we are giving him a support that is not meant to get him to neutral position. I fear it is a step in the wrong direction, but the only thing we can do. And we are only 9 1/2 m post surgery.

I can only pray for guidance.

In a funk

I'd be lying if I said I was doing better today. I'm not. I am in a real funk. I was hoping that over night I would have some insight and perspective but I don't.

Maybe it is because this massive surgery was less then a yr ago and to find out that it is not working and to hear surgery again makes me second guess everything. Maybe we should have held off on the surgery. Maybe we should have gotten a second opinion. Maybe we should have just botoxed again and waited. My gut feeling on what should be done is gone. I'm lost and feel like I have failed him in many ways.

I just want another adult here with me for a few days. Hubby doesn;t fit that bill. He wouldn;t take time off work, and when he is home, he has his own priorities. I guess he is used to me being able to handle it all. Guess I am going to have to give myself a big kick in the ass and pick myself up. Hubby is off hunting for the weekend, going to need to do it soon.

And what makes things worse is I know deep down that so many have it far worse and I should be happy for what I have. But I can't, which makes me feel so selfish and weak when I need to be strong for him and for our family.

Boy, this comes off as a feel sorry for me post. Not my intent. Just need to get my feelings out, hopefully that can start me on the right path so I can be who I need to be for my family.

Broken for good

Here is Matthew's AFO. There is no fixing this one.

Not a good day

Well, today was not the best day.

I picked Matthew up from school and he wanted to stay and play with his friends. I reminded him that we had to see Dr K at the hospital so we had to leave. He got really mad and took his AFO off and threw it on the floor. It cracked in half. No fixing it. It's garbage.

When he looked at me, he was on the verge of tears and so angry but he was holding it together because his friends were standing right there. I know how he was feeling, because I was feeling the same and just holding it together because all of his friend's moms were standing right there.

I got his boots on and we got into the van were both of us broke down crying. It was a rare moment. I usually hold it together with him, but today I couldn't. We sobbed all the way home and when we got home, we all cuddled and Matthew and I cried. He finally was able to tell me that he was so scared and angry because he is worried that he will need another operation. He wanted me to tell him that he would never have any more, but I couldn't because that is not a promise I can keep.

We finally got ourselves together and went to the hospital where we had a rather awful appt. Dr. K is really disappointed at the tightness in Matthew's foot as well as he has 10% equinus back. That means his foot is no longer neutral and can not be brought into neutral. We are fighting massive growth and losing. He debated casting him now but decided not to.

He said that he is hoping we can hold off the next surgery for a yr, but he is not sure it can wait that long. His foot is regressing way to quickly. The good news is the next surgery will not be as invasive as the last. He would only need a minimum of 1 night in the hospital (maybe 2) and he would go home in a walking cast.

Oh, and he needs a new AFO. Not just because he broke his, but because he can;t have it in neutral anymore.

So I am bummed out, Matthew is emotionally spent and I am sure he will be upset for a few more days. And, we have to start the whole AFO fitting process from scratch... again.

I think I need a few days to process this.

Waiting...again

Well, we are off to see Matthew's surgeon this afternoon. I have been waiting rather impatiently for this appt but now that it is almost here, I don;t want to go. I guess I am nervous that he is going to say that perhaps this surgery was not that successful.

I guess it is a good thing that this appt hits at the same time as the Care For Kids Radiothon. It is keeping me grounded by reminding me that regardless of what happens with his foot, he is still healthy, at home, and will live a long successful life. It is as much as I could ask for.

So, anyways, I am making my list of questions for the surgeon.

how successful was the surgery
where do we go now
do we need to start physio (foot turning in, walking on side of foot)
how is the fit of his AFO... ankle placement
foot rub marks/calluses is this a concern
should we be concerned about the bruising around top of AFO
his foot seems so tight is this a concern
can he do ski lessons

So that is it so far. Will have to think some more to see if there are any others.

Will update this afternoon some time.