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.