30 July 2010

Fiscal responsibility

When you have a child, other than gifts at the shower or birthdays, you don't expect someone else to help you buy the things you need or help you financially with some of your expenses in caring for and raising that child. You take on the task of being a parent knowing that this child's well being falls under your direct emotional, physical and financial support.

But change your kids needs to moderate and the equipment, toys and supplies become ridiculously overpriced. Now, change your kids needs again to significant and you've reached a place where even the basic things like a chair are several hundreds of dollars.

In a world where adaptive equipment and toys are the norm for us now, it still doesn't feel like this is our normal.

It is a frustrating feeling to know your child needs something and not have the money to pay for it. And it isn't like we are needing something extravagant! Just basics. Just a chair for Liam to sit in that would allow him to sit at the table with us or play at floor height with us is $400. And this is for a chair made of mostly high density foam and plastic! When items can't be manufactured, reproduced and sold in bulk at low cost retailers like Wal-mart, the costs go up significantly.

I know most people think that insurance and medicaid pays for these things that special needs kids need, but they don't. Our insurance and medicaid will pay for only 1 large piece of equipment that provides seating/mobility every 3-4 years. One. That leaves anything else we would like to have or need in order to make Liam's and our lives easier up to us.

Insurance and medicaid think that leaving a child in the same wheelchair/stroller all day long is sufficient.

We are in the process of trying to get Liam an adaptive stroller. Insurance needs more information as of right now in order to proceed, but I am hoping Liam will have it by Oct or Nov. That will make a big difference for him for when we are out running errands.

But we still have the problem of seating for in the house. His new stroller is a Kimba. It's German made, very nice, and big. Too big for our home.

For now he sits in his too small tumbleform seat until we can figure something out.

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26 July 2010

Books for special people

By being considered legally blind, even though Liam has some aspects of vision, means he qualifies for a program called the Seedlings Braille Books Book Angel Program.

Every year, qualified kids like Liam, can apply to receive two books completely free of charge. These books have been outfitted with braille type in order for blind children to have access to books that they can read.

They have a large list of books to choose from and I usually check with Amazon to see if any of the books listed would be visually appealing to Liam. Because Liam is 'blind' he loves to look at bright books, books with out busy backgrounds or pale colors and books that have a sensory aspect to them (noise or touch).

This is Liam's second year to receive the braille books.

We received Good Morning, Good Night which has textured pages and big pictures of animals which Liam loves to look at. And What Do You Say which is right up Liam's alley because he knows all the animals sounds.

You can see the braille type on the photo if you look closely.

Liam loves to feel the braille. I have to hold his arm in place so he can explore with his fingers but he loves to take his fingers and touch it. Whether he needs to read braille someday or not, with this book program it gives his senses something else to explore.

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21 July 2010

Taking over

After a rare 3:45 wake up call by Liam, who woke up and wanted to play, I put him in bed with me so he would fall back asleep. Nothing like mommy holding him tight so he can't flit around. After smacking me around for a while he finally fell asleep about 2 hours later. When I finally woke up, I found him sprawled across my bed, in the center, sound asleep.

And I took this picture after trying to wake him up.

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18 July 2010



I can't get motivated lately.

A million thoughts and yet I can't seem to type anything out.

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13 July 2010

Great report

We got a great report from Liam's most recent eye exam. We saw the specialist at Duke today who pronounced Liam's eyes beautiful and functionally perfect. He is still near-sighted (always will be from his premature birth) but other than that his eyes are awesome. If anyone knows the measurements and is interested, he's a -12 in both eyes. Which is really, really near sighted.

They always check his tracking when we go and although he improved at the last visit he was the same at this one. Liam doesn't track in the traditional sense. Normally you will follow an item with your eyes and turn your head as you follow it. Liam lets the object get out of his sight and then jerks his head over to find it. He doesn't track or follow objects well. Unless it's his books. He does seem to track those regularly but still not as smooth as he should.

So, great news all around though and we don't have to go back for another year! Liam says:


Now, I just need to get him some new glasses because his existing pair is getting too small and he will not keep them on. Ever. It cracks me up that he doesn't use his arms well but can rip off the glasses every time they are on!

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08 July 2010

Our favorite new pastime.

For the most part Liam does pretty good sitting in his bike seat now. Last year it was a disaster. He was just too small and didn't have enough body awareness.

He doesn't like getting strapped in but once we take off he is so good the entire time.

He can sit in it with or without this insert. But if I put it in it helps soften the sides and makes the seat a lot more comfortable. We used to be able to use this insert in the Wal-mart carts so he could shop in the basket like all the other kids but our store got new carts and they are too narrow to use it now. So, at least we can still get some more use out of it.

You can kind of get a good idea of how big he's getting by seeing him in this seat. Although he's still our little man, he's evidently not so little anymore!

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07 July 2010

I want a removable label, please.

Liam finally had his two year check. Yes, he's been two for 7 months. But unofficially he's only been two for 3 months. And no, he's not too old to still be using an adjusted age!

Anyway, he's doing fine. I guess. I mean, it's not like I can answer the stupid papers that you fill out for the two year check up! When I signed in at the front the nurse handed them to me and I told her I didn't need to fill them out. She looked at me like I was an idiot. I started to explain that my son has CP and doesn't do one darn thing on that list. I was just trying to avoid having to look at the list of what typical 2 year olds do and save myself the frustration. But I took them anyway to save myself from more explaining.

I could have just avoided the papers; folded them up and put them in the diaper bag. But noooooo, I had to take a peek at them. It was deeply depressing.

God bless my Dr. though. She didn't even ask for the papers when we went in.

Liam is still holding his weight at just shy of 25 lbs. His length is pretty good. Head circumference...eh. Not so hot. His head hasn't grown much in the last 6 months and it's small for his age.

We've had the microcephaly diagnosis tossed around before. If your head isn't what the charts say it should be then you are given that label. Liam's head is small, but it's appropriate for him and appropriate for the micropreemie toaster head that he still has. She didn't want to say he does have microcephaly but she said that the small size meant that a child would typically get that label.

That's all my kid needs. Another label.

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05 July 2010

The 4th

I hope you all had a wonderful fourth of July! This was to be Liam's first year going to 'see' the fireworks show. We took the kids here:

There were relatively few people considering the view it afforded us. We found a spot to claim for ourselves and spent the latter part of the evening all alone on the edge of the pier and watched the sunset. As twilight fell, Liam started to fuss and before I knew it he was sound asleep tucked inside my jacket and the fireworks hadn't even begun yet. He slept through the entire show. =( Maybe next year.

As we were leaving, it was extraordinarily dark. I was carrying Liam along these piers going as slow as I could to keep my balance all while helping my mom navigate her way as well. When we got to the section which had one of the ladders to climb down some people saw me carrying Liam. They shouted out that we were there, and everyone stopped what they were doing, shined a light on the entire area and made sure we all made it safely down. The kids talked about that moment several times after we got home. It was definitely a neat feeling to see everyone make sure that someone had our backs out there.

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