The 'F' Word

Ahhh, the dreaded 'F' word. Nothing brings anger or fear faster then that dreaded 'F' word.

Of course I am talking about FUNDING. Grrrrrrr.

Got a letter in the mail addressed to my six yr old son from a government office. Right away you know it will be bad news or something confusing. Luckily for us, it was just something confusing. Seems that they are changing the way AADL funding will be received. I *think* after reading it, calling the phone number and listening to the lengthy message (with two boys screeching in the background) that this is the exemption form because he is under 18 yrs of age. Either that or he is exempt because he makes less the $20 000 a year.

So, more forms to fill out with no change in funds. Rather silly but must be done. I mean the kid is on his third AFO since spring and they cost almost $2000 a pop. Hell, we have a closet full of them since he first started wearing them at 2 yrs old. So the forms are a necessary evil.

Speaking of funding, I just found out that I could be getting more funding for respite. I could be getting funds for a sitter so that I could take Matthew to physio without taking Ryan. How frustrating! How am I supposed to know about all of the funding that is available to us out there?

And on that note, I just found out that if I had applied for extra funding shortly after Matthew's surgery, he would have gotten it immediately. Post-op kids get put at the top of the list for funding for physio. Because I didn't know and we didn't apply until he was 10 months post-op, he was put at the bottom of the list. So until we receive that funding, we exhaust my husbands work benefits, crossing fingers that it lasts as long as we need it to.

How do parents walk through this maze? Are they all wandering around blindfolded, smashing into walls like I feel most days? Is there some secret book out there that has not been passed to me? Or have I failed to learn the secret handshake?

One way or another, I need to figure this all out. I need to stop being the one wandering through this journey blindly hoping I find the right path. I need to lead.

13

Mommy! Watch me! Love those words.

Today, Matthew can hop 13 times on his left foot. 13. Just this summer it was only 3. That has to be good news.

I will put that one on my trophy shelf.

Lost

This post is about me.

I am feeling lost. Ever since we got the news last month that Matthew will need more surgery so soon after the last one, I have been looking for support and for some reason it feels elusive to me. I have turned to my friends, and they are fantastic. They listen, they say wonderful things, they help me up... but I need something else. Some one to whine too about crappy AFO fitting appointments. About tips for physio. About how to deal with the questions he asks me.

I've tried the clubfoot groups but because Matthew's foot is atypical, the problems he faces are so vastly different that I don't fit there.

I turned to blogging publicly and have found some wonderful special needs kids sites that have great support, but those people are experiencing far more difficulties then I am so I feel like I can't go there. Feels like what we go through is so small and uneventful compared to those facing such monumental difficulties. I suppose Matthew isn't really a special needs kinda kid. Just a kid with a lot of specialist appointments... and extra care...

Not sure where I fit.

I've been meaning to post here for over a week now but with sick kids, Christmas parties and a sick Mommy, the week disappeared on me.

Matthew has been to physio twice since last I posted. It is still painful for him as I suspect it always will be. It is one of the things that is and will always be a part of his life, now with a physiotherapist, and perhaps as the years move on, by himself as he learns to take care of this on his own.

We are very lucky to have Lynnette as his p/t. She is very good at what she does and so good with him. She has told me a few times now that she is amazed at his tolerance to pain, that she is pushing him beyond his limits and he rarely does more then a flinch. Not sure how I feel about that. It isn't pride really, but not sadness either. So strange to hear someone tell you your child can take pain very well.

Lynnette is impressed with Matthew's latest AFO. Her words when she saw him walking and running in it were 'wow'. Gotta like that. :) He is now wearing it all day most days without one adjustment. Ken worked some magic this time. We go and see Matthew's surgeon on Dec 22 to see what he thinks of it, but Lynnette and I both suspect he will be happy. I sure hope so.

Without the AFO, Matthew's gait is still terrible. So much so that Lynnette asked me to not let him run in soccer without it. She is worried of pulled tendons, stress fractures and numerous other icky sounding things she told me and I have blanked out of my mind. So in soccer, I am now trying his indoor running shoes. They are not recommended for indoor soccer, but then again neither are the consequences of not wearing the AFO. The next time I see Ken, I may ask if we can adjust the length of the AFO to fit the soccer shoe, although I hate to mess with a good thing. The old saying 'if it ain't broke, don't fix it' keeps ringing in my ears. He did well with his indoor running shoes at soccer last week though, so maybe we can just keep up with that.

Lynnette has also asked if I wanted Matthew to participate in a skate day at the Oval she does with her kids. I thought it would be great but asked about getting a skate on with the AFO. Putting footwear on without his AFO causes his toes to curl under and he can not straighten them. She suggested asking Ken if he can make a small, thin piece that doesn;t go very high to help slide into footwear. Thought that was a brilliant idea, will need to speak to Ken again.

Lynnette has also asked if Matthew has a hand held gaming system. He does not. I was hoping to stay away from those for a long time. I see her point though. She brought her son's to Matthew's last physio session. He played it will she stretched him. Because he was preoccupied, she was able to really push him farther then before. She showed me after that his foot was actually in neutral position, in a better position then the AFO. In fact she said if it keeps up, Ken may have to try and lift the AFO to that position.

Wow. If a handheld gaming system can allow that to happen, I am for it. See, that is what the next surgery is for, to loosen his heel cord and allow for neutral or above neutral position. If she can help out through stretching, maybe, just maybe we can hold off a year or, dare I say, longer on the next surgery. Wouldn't that be wonderful. To me, that is the most wonderful news ever. The best Christmas present I could ever have right now is to delay that surgery, to delay possible botoxing and serial casting as long as possible. A lot of my worry these days is how quickly his foot is regressing. The surgery he had last January was supposed to happen around age 8 and the surgery being discussed now was supposed to be held off til 10 or 12. Everything is speeding up and I worry about how many more surgeries will be done, how many more CAN be done. I would think there is a limit on these. If we max out before he hits puberty, what then?

I see Lynnette, and Ken and Dr K and all others who help out with his care, as angels. Some how, our paths crossed and she is opening doors I never though possible. Just when I feel I am down at the bottom, one of these wonderful people reach down and hand us hope.

I do believe in angels. We just need to look around and see them. Where will this little foot take him? Right to these angels that stand among us.

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.

Believe

Boy, it has been awhile since I updated. Wish I could say it was because things were moving so well and so fast that I didn't think to update. In fact, the opposite is true. Things are changing so slowly.

And my mind is blank.

He is still able to move his toes up. Maybe a bit more then before. Not much. The front of his foot is still terribly turned. I am beginning to suspect that it will be his norm. That his foot will never be completely straight. I am trying hard to come to terms with that. Of course, Matthew does not question it. He just moves forward.

And he is still growing. Another 1/2 inch since June. No change in wt though. I put him on the scale the other night, 37.6 lbs. Oiy. The growth means his foot can't possibly stretch as fast as he is growing. What does that mean? I am not sure. We see his surgeon in November.

But, as an outsider, most people won't see it. Kids will though. They see every difference. That is my fear. He needs to be strong, and be independent. He needs to be confident, so he can ignore what they will say. He needs to be strong willed. He needs to be a leader. Most importantly, he needs parents to instill that in him. It is a tall order. He has the basics of those characteristics, but they need molding.

I need to step up to the plate.

A good friend of mine gave a stone that has the word BELIEVE carved into it. I have it on my kitchen counter so that every morning, I walk down the stairs and it is the first word that I see. It is a powerful word and I embrace it. I need to believe in the doctors, in the science that I hold so near to my heart, to Matthew, and to myself. It was the most wonderful gift. It inspires me, as I need it. Daily.

I have some big shoes to fill.

Confirmation!

It has been confirmed...

We have 15 degrees of dorsiflexion!!

You guys have no idea how this feels! 2 weeks ago, at his last P/T appt there was nothing and now he is at 15 degrees! He was also able to sustain a hold.

(This means that I have no idea.

But it means that his foot is moving up 15 degrees past neutral, which is when your foot and leg are at a 90 degree angle.

To give you an idea of how amazing this truly is, last yr, when he was botoxed and casted for 8 weeks, we could barely stretch his foot into neutral after the casting. He can now lift his foot higher then that on his own. )

She says that they stretching I am doing as well as the P/T is working. I am so thrilled!

What does this mean? It means that for the first time in his life, Matthew has the possibility of near normal motion of his foot. It will never look and function completely normally, but this gives the hope that at some point, he will not need to wear his AFO 8-10 hours every day.

Btw, I had to fight back the tears when his P/T told me. This is the best news... ever.

Waiting

10:09 AM, May. 28, 2008 .. 0 comments .. Link

I spoke with Matthew's P/T after dropping him off this morning. She has a session with him and will take a look to see if it is indeed moving upwards (active dorsiflextion). She will most likely be gone by the time I pick Matthew up, so I will have to wait until his IPP meeting tomorrow to find out.

Gosh, waiting is so hard!

Could it be?

I'm not sure.

Trying hard not to jump the gun here.

Trying to contain some excitement, because, well I am just not sure.

Last night, I was stretching Matthew's foot as always. Asked him to try to lift his toes. I do that periodically. I thought I saw his toes move up.

Just a bit. Just a tiny bit. But I was so excited I yelled for Craig to come up and bring the video camera. He watched and then taped it. He thought he saw it too.

So, after bed, I watched the video over and over and over and over again. To the point where I am not even sure I saw it anymore. Then Craig and I tried to figure out if he could have been moving his leg to make it look like his toes moved. I did hold his ankle so I think his foot was immobilized.

I think it moved... up.

What does this mean?

In the world of doctors and surgery, it means that the muscle/tendon that they moved from the inside of his foot has attached and may be starting to work. That the loss of muscle/nerve conduction was less then anticipated.

In the world of one 5 yr old boy, it means that maybe just maybe he will be able to have a foot that can function without the use of an AFO for the rest of his life.

I am going to try to attach the video. Please, be candid. Tell me what you think.

Tippy toes

I am really trying to stay positive with this. Really, I am. Some days it is so hard when I see his foot without the AFO. Honestly, it looks bad. I was hoping it would look more normal, but it doesn't. So, I try to focus on the positives.

Last night, I was reading the boys a story before bed. Matthew stood up, turned around in a circle a few times before finally saying "Mommy.... look.... "

I looked down and there he was on his tippy toes.

K, you need to wipe the image from your mind of a little boy way up on his tip toes. It wasn't that. In fact, if he hadn't pointed it out, I would never have seen it. But his heels were off the ground ever so slight. And his toes were pointed forward.

On his tippy toes as much as he can at this point.

It really is baby steps over here, and I need to celebrate them all.

Today, I celebrate that ever so tiny step that most people would dismiss because I have to, I need to, I want to.

I've said it before and will say it again, this boy's determination will take him far in this world.

Physio

Matthew saw a Physical Therapist.

She is quite happy with how he can function with his AFO.

Without it is another story.

She was surprised at how tight his foot is. Asked me what the surgeon said about that. I never asked. Felt rather foolish that I hadn;t asked, I mean, I have been concerned about it just didn;t know what to expect so I thought maybe that was normal. Apparently not.

So, now I get to add to my routine daily physio and daily stretching. He will see her in 2 weeks and we can assess how often he will see her.

Hubby and I talked and decided to add 5 min of silly walks right after dinner. Matthew needs to work on walking on his tip toes, his heels, and the insides of his feet. Immediately I thought of the Ministry of Silly Walks (Monty Python). Thought, hey, that would work for half of the physio. The other half we will just have to try to fit in.

Not looking forward to the stretching though. I know it shouldn't hurt, but it won't feel good. I hate to be the bad guy, but I have to keep in mind the ultimate goal. We want for him to be as normal functioning as possible. If this could help to be AFO free during regular day to day activity, gosh, it will be worth every second of this.

Determination

Matthew played soccer again last night. He absolutely LOVES it. Never seen a kid so excited when he gets to kick the ball during a game.

Well, last night, Matthew got a goal. Not one of those break away, run to the net, kick it high in the corner over the goalie's shoulder kinda goal, but one of those, busy traffic around the net, someone kicked it towards Matthew, he bumped it with his shin and it skipped quietly past a player into the net. But that doesn't matter. He got a goal. He knew it, I knew it, and all of the spectators knew it.

Not much makes me cry, but I had to wipe the tears away. My expectations for his soccer season were blown away. He is less then 4 months post surgery. I wasn't even sure if he could play soccer, let alone be one of two kids last night to score. I am so proud of him. I wanted to yell out to all of the parents. To take Matthew's shoes off and show them all the scars so they too could understand how amazing that small acheivement was.

It is funny how something so little, and so normal to most parents and kids can bring so hope for the future. All of a sudden, I didn't see Matthew sitting on the sidelines watch games in high school, I saw him trying out and making teams. Playing baseball, basketball, volleyball. What he decides he wants to do, he will make it happen. His determination will bring him so far in this world.

Today, I embrace that determination.

Busted!

So on Tuesday, I went to get Matthew ready for soccer and found his AFO had a huge crack in it.
It is hard to see, but the crack goes from where it articulates, down past the ankle and down to the middle of the bottom of the foot.



Put it on him anyways and he played soccer. Did really well, was able to keep up with the other kids, kicked the ball a few times and even took it away from the other team a few times.

So on Wednesday, I called his orthotist. He got an appt at 10:15. Found out then that the AFO was not repairable. But, he was able to have a new one made in the next few hours, could I leave the old AFO there and come back at 2:30.

Matthew was seeing his surgeon at the ACH at 1:20 and I needed the old AFO so he could tell if it was fitting well. So I had to leave his old AFO at the orthotist, go back for 12:45 to pick it up, see his surgeon at the hospital at 1:20 and back to the orthotist for 2:30. Among the other things that had to happen.

Anyways, got to the hospital on time and got in right away. His surgeon looked and felt the fit was ok, but was disappointed at the front foot still pulling in and the lack of upward motion. Never good to hear the surgeon say that.

He did say though that it could take 2 yrs before we see what we want. 2 years. Sigh. Guess I was hoping for sooner.

He was rather amazed to hear that we all did a 4 km hike on the weekend and that Matthew did about 3.75 km easy. The last .25 was tears, sitting down, tears, bribes and more tears. He was sore, but walked the last bit and was rewarded with his choice of restaurant for dinner. He picked Mexican.

So back we went to his orthotist who had his new AFO made and ready. So we are now back to square one, with sore spots with a new AFO. Trying to get a good fit so he can wear it 8-10 hours a day. Hoping this one will adjust easier then the others in the past.

One a really positive note, not sure if it was the new AFO or not, but I was able to get a pair of running shoes (Ironman) and rubber boots at Wal*Mart today. We were getting desperate!

Feeling down

Been so bummed all day, I decided to take some photos so I could do a comparison. Thought it could make me feel better.

Pre surgery photo is first, post surgery second









So, his foot is looking better. He is standing flatter, his foot is straighter. Not perfect.

Kids can be cruel, any difference will garner name calling.

I guess I am secretly wishing for perfect.

Nothing stellar to report

We were at the hospital this morning. Matthew was sore today, not really sure why, so Dr K didn;t get to see him moving well, he was limping.

Nothing stellar to report today and I am bummed. Could be the head cold, PMS and cramps I have today, but I am feeling down about it all.

Dr K feels things are looking good, but that Matthew needs some modifications to the AFO. His front foot is still turned inwards so the AFO needs to be built up to push it over. I asked about him walking on the outside of his foot when the AFO is off. He said that is normal and the reason why he needs to be wearing it 8-10 hours a day. Sigh. We are doing about 6-7 right now so not enough and we are coming up on hot weather. AFO's are so hot to wear. Poor kid. Gonna be a tough summer.

So, back to the orthotist we go for the adjustment, then back and forth til we get another good fit. SOmetimes it fits well after 1-2 adjustments, other times it takes numerous ones. We go on Monday. I am going to ask that Ken put a rubber bottom on the AFO as well. We are having a tough time finding shoes this season. Seems that all the shoes are too narrow for an AFO. With a rubber bottom, he should be able to go without shoes in the house, and maybe in the yard this summer.

Then once it fits well, it is back to see Dr K to make sure he is happy with the fit.

Guess I am just tired of it all right now. Not a good time, we still have a long road ahead of us.

Waiting and worrying...

Well poop.

I was so geared up to head in to the hospital this afternoon for Matthew's first post-op cast free appt with his surgeon. I want to know if he sees Matthew's toes moving, what he thinks of his running, the foot turning in slightly, and if we should start P/T.

But the hospital called and have canceled the entire afternoon clinic. We are re-scheduled for next week.

I am bummed. I guess I just want a professional opinion on his progress. I am nervous because when he is out of his AFO, he walks on the side of his foot. And he is sore. So worried about regression after all he has been through. I want his pain and suffering to be a good outcome. I didn't realize how much I had been looking forward to this appt, until it was canceled.

I suppose another week shouldn't change things. I keep repeating the Mark Twain quote to myself...

I have been through some terrible things in my life, some of which actually happened.

Strength

Strength.

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.

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.

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.