28 October 2010

Taking a leap of faith. Again.

So...what's new?

Well, that cute little widget that doesn't fit entirely in the layout of my page over there on the right is. That missing slice of the widget bugs me but I can't figure out how to fix that without completely rearranging my layout so for right now it will have to be off. Sorry Megan! =)

Who wants to be the first guinea pig and test it out?!?

Liam's therapists are awesome. They are always so encouraging and trying to help us think of ways to raise money or tell us how others have raised the money needed.

Well, I'm not at the spaghetti dinner, golf benefit type stage (believe or not I am shy about asking for help), but I do want to be bold and just put it out there that we are trying to raise money. Again. Yup.

Liam is stuck. As a therapist told me last week, "He's what I call one of the trapped children." Can you imagine if it was your child? You'd do everything to help them. It's maddening to know he's in there and he's trapped. I want to do everything I can to help Liam. Only I can't. I am not rich. I don't have the money. And as always, insurance won't pay for anything.

Stem cells (not embryonic) are healing kids with CP. I have first hand knowledge of stem cells helping these kids move beyond their deficits and get better. Miraculously better. Life changing better.

I always pray for a miracle for Liam. But what if we are supposed to step out in faith and use science to help heal him?

I knew, with out a doubt, that Liam was to undergo HBOT. And I watched God make that a reality for us. Liam still needs more. We've had to wait on them for various reasons one of which being because all of the previous donations were spent on the 80 dives he's received so far. We would not have been able to take Liam at all if it hadn't been for the donations of people like you. The people who still read the blog and pray for Liam and anticipate a miracle happening in his life. And guess what? Those 80 dives have helped Liam emerge a bit. He's using his arms, his receptive language has taken off, and he's gotten so much stronger.

What if we were able to expand upon his HBOT by adding stem cells. It would be his own cells. They would be extracted from his fat (some scientific doohickey stuff is then done to it) and it's reintroduced in order to have them migrate to the damaged areas of his brain and heal them. And it's helping these kids.

I want to give Liam that chance. If God wants us to give Liam that chance. So, I thought I'd start out asking here. And see if it could happen. Liam's worth asking for.

post signature

27 October 2010

A vacation.

We went on a little mini family vacation this past weekend. It's the first one since Liam and Brady were born. And he's almost three!

I love the mountains here in NC and when I spent so much time out there for oxygen treatments for Liam, I absolutely fell in love with everything on the western side. When the kids would visit me at Miracle Mountain, we would go hiking along the Blue Ridge Parkway. Waterfalls, vistas, and nature galore.  After having spent 7 weeks at the northern part of the parkway, I wanted to see a bit of the southern portion.

We decided on the Asheville area and spent 3 days trekking through hiking trails along the BRP and in state parks.

We had such a good time. We should have stayed longer. The fall colors were already gorgeous and at their peak.

And Liam was such a trooper.

It takes us about 6 hours to drive over to the mountains and then we spent most of our time driving to one hiking place or another where either Shawn or I would carry him in his sling so he could enjoy the trails with us. He never fussed.

We spent one entire day hiking all the trails at Chimney Rock State Park. I've always wanted to go there since seeing it in The Last of the Mohicans. It is simply beautiful up there.

*Overlooking Lake Lure where Dirty Dancing was filmed from Chimney Rock Park.
*On Chimney Rock
*Chimney Rock

On our way home we went by Mount Mitchell, the highest point east of the Mississippi. It was the only place that we were able to take Liam in his stroller. Every other place was trails that required he be carried.
After spending so many days either in a car seat, carrier, or stroller, I had expected Liam to be irritated. He was quieter than usual, but he was still an easy going boy for the entire time.
When we got home, I took him out of his car seat and told him he was getting out. I never said we were home. It was late and already dark. When I walked into the house, but the time I hit our dining room he was starting to get excited and when I rounded the corner into the living room (his play area), he started to laugh and when I laid him down on the floor, he had the biggest smile, where he laughed and danced for 15 minutes straight. Even though he was a trooper, he was very excited to be back home. Things like that still come as a surprise for me because Liam doesn't see well and with no communication I don't know how much he understands. But I know now that he definitely knows home.
post signature

19 October 2010

It happened again.

Some of my long term readers may remember this post back in 2008. I was at a baseball game when a woman assumed Liam had Down's Syndrome. It irked me to no end and I blogged about how I felt. It brought about a few comments and got a discussion going about what I thought was an obvious difference between CP and Down's Syndrome and that people shouldn't make assumption and should apologize if they get it wrong.

While in Wal-mart today, the very lovely cashier was talking to me and commenting on how cute Liam was. She loved his shoes and was asking me where I got them. As I moved through the line and had now planted myself in front of the machine to pay, I watched her watching him. I knew something was coming, but I was prepared to answer any questions she might have. I welcome them. What I did not expect was another assumption that my son had a chromosomal disorder.

Cashier:  "He is so cute. My friend has a son that looks just like your son."

Me: Smiling.

Cashier: "He has Down's Syndrome, right?"

Me: Thinking (ARGHHH NO, Are you kidding me?!) But only saying a very flat, "No". Pause. "He has cerebral palsy."

Cashier: "Oh, he is so sweet."

I didn't bother to explain anything further and she didn't ask. I honestly wonder about these people. It's happened twice now and neither time has the person apologized for assuming a syndrome on my child. Honestly, although irritated at the labeling happening again, I am not angry over it. I am just absolutely flabbergasted.

If anything, I hope she doesn't automatically assume anymore that any child coming through with some sort of special needs, like Liam's, has Down's Syndrome.

I would have been so embarrassed had I been in her shoes.

post signature

15 October 2010

Liam playing piano

Liam started smiling when Rylie played the piano so I thought I'd let him try. I've tried before but I had to move his hands to do so.

Now he doesn't need any help. =)

post signature

13 October 2010

Super Switch

I was talking to a friend about how Liam is now using switches to turn on toys and mentioned that I really wanted to get him a Super Switch but couldn't afford to buy one right now. A Super Switch is a wireless switch that attaches to your computer. It allows the button to be used as a mouse click. But it also becomes an interface and allows you to connect to more switches so it can be used as a stepping or selecting process.  The possibilities are endless and once a child gets cause and effect the learning can take off.

My friend sent me an email later that day and said that they wanted to buy Liam a switch (I love you guys)!!

We got Liam's switch and here is a video of him using it.

*This is a powerpoint that we set up with pictures of Liam's favorite book and our voices attached to each page.

How awesome is that?!  This little boy can't hold up his head at all, doesn't have any trunk strength, and is very uncoordinated, but he is finally getting the hang of using his arms. You can see how hard he works at it too.

Liam does gets cause and effect. He doesn't attempt to keep hitting buttons once a toy is on. And toys that need continual hitting (piano, etc) he will continue to hit. He's made a lot of progress in the last 6 months (since our last round of HBOT).

Now that he turns the pages of books on a computer, it will open up a whole new world for Liam.

post signature

12 October 2010

Spinal taps

I recently started taking Liam to the chiropractor. This Dr had been recommended to us numerous times over the past two years but I've never felt the need to take him. But, now that Liam has medicaid, our out of pocket expense is more affordable so I thought we'd give it a try.

The first couple of times Liam did great, but he eventually started crying when Dr. Spine was working on him. He said he was going to be a little sore and that was to be expected.He does these little taps in a few places with some device that he uses over his hand so it doesn't directly touch Liam.

Liam goes twice a week and we are only there for 15 minutes at a time.

Yesterday, we sat in the lobby for a bit and when we got called back to the room, I sat down in our usual chair with Liam.

No joke: Liam looked all around and burst into tears.

It was one of the saddest, most beautiful things ever.

post signature

06 October 2010

My Christmas List


I've hijacked mom's blog. I wanted to give her a list of everything I want for Christmas and thought there wouldn't be a better place than the blog. She can't miss it now. And there's no excuses for her not having enough time to get these for me!

I'm so excited because now that I am using my arms better to play with toys, I keep seeing all these cool toys that would be so fun for me to play with! I can't wait until Christmas. I know mom says it isn't about presents but I'm pretty sure she'll put some of these under the tree.

Oh, and if you know of any that you think might be good for me, please let my mom know. She doesn't get to go shopping much so she could use the hints!

Here they are, in no particular order. Any one of these would be great!

VTech Infant Learning Jungle Fun Music Box

Yes. I know what you are thinking. It's pink. But, I don't care. I love how when I press the buttons the giraffe in the middle spins around. I love to play with it when  mom shows it to me in Walmart!

V Tech Musical Bubbles Octopus

Ok. This toy is just the coolest thing! It blows bubbles! It teaches animals names and sounds, as well as instrument names and sounds when I press the buttons. It will suction cup to the side of the tub so I can actually have a fun toy to play with while I'm splashing in the water!

Spin & Discover Globe

This is so cool too! It's a globe for me! I can spin the globe myself and press the buttons to hear the animals from around the world. It's never too early to start learning a little geography, right? Are ya with me?

Vtech - Paint and Learn Art Easel

This toys is pretty awesome. I love to watch my Baby Einstein movies and when they pain in the movies I think it's pretty funny. I don't know why, but it cracks me up. I like this easel because I can do so many things on it all by myself!! Look what I can do with it:

  • Double-sided learning card teaches letters and numbers
  • Light-up buttons and chunky piano keys teach colors and music
  • Light-up paintbrush interacts with light-up buttons and strengthens fine motor skills
  • Includes two modes of play a Learning Mode and  a Music Mode

LeapFrog Learn and Groove Color Play Drum

LeapFrog Learn & Groove Alphabet Drum

Either on of these drums would do. I love banging on the drum in my speech therapy and these seem like they would be so much fun!

Fisher-Price Laugh and Learn: Learn and Move Music Station

I think I'd do pretty good with this toy! I like how the keys will change what's on the tv and I can learn and play along with both! How cool is that? I'm doing pretty good with my switches on my computer so I think this one would be a lot of fun for me too. I can thank my mom's friend Ashley for showing us this one!

These are just a few of the ones I really, really want. I can't wait to see what mom thinks of my list. And remember, if you know of any that you think I'd like or would be good for me, please let my mom know.

Ahh... I can't wait until Christmas!

post signature

02 October 2010

CVI Assessment and *blindness

What does Liam's blindness mean?

Well, Marcia (Liam's VI teacher) and I did a reevaluation of Liam's cortical visual impairment this past week in order to have an updated report for the school system.

CVI is rated on a 10 point scale with 1-2 being the worst and 9-10 being the best. Each of these numbers then have phases of I-III.

When Liam was under one year of age he scored very low on the CVI scale. We didn't do any assessments on the scale for him then because it was just so bad. He would have been at the most, a stage 3, phase I. It wasn't until Liam was 1 1/2 to 2 years of age that we really started to see growth in his vision. When we finally assessed Liam a year ago, he was at stage 5-6, phase II. He was still lacking in facial recognition, distance, colors and details, etc.

I knew Liam's vision had continued to get even better as he grew through his twos and when we evaluated him this week we were excited to see that Liam had moved up the scale to stages 7-8, phase II-III. He's almost to a stage 9 in certain areas of his vision!

Liam's continuing struggles are with distances of over 4 feet, novelty (new people don't garner eye contact, but he's starting to do so), field loss (he doesn't look up), complexity of the environment and what you'd call your natural eye reflexes (he doesn't blink when you bring your hands near his eyes).

With the new assessment we have new goals to work on and I truly expect his vision to still continue to get better. With the oxygen treatments we've done and continuing use of supplements for brain and eye health, we've seen some wonderful changes already over the last year.

With the struggles Liam faces with his CP, it's awesome to have his vision not be a major contributor to his difficulties.

*It's important to remember that being blind does not mean that you have zero vision. Liam is still considered blind because of his visual perception issues. While he has pretty good functional vision, it isn't whole vision. And yet, even though he is considered blind, for the  most part, we don't consider him as such.

post signature