Thursday, March 19, 2009

March 19th, 2009

So many updates.  Where to start?  Let's see...  Carver got his new DAFO's last week.  They definitely keep him from standing on his toes.  They also help him stand better.  No, he's not standing, yet.  However, when we hold him in a standing position, it's much easier, now.  I'm posting a couple of pictures for those of you that don't know what DAFO's look like.

Can you tell that Carver is less then trilled with his new DAFO's?  This was after a couple of days.  He doesn't seem to mind them, now.

They look like boot sandals.  They extend up almost to the knee.  He has to wear long socks that fold over the top.  This helps keep the leg from getting irritated.  We can trim the toe part off if we want, we just haven't done it, yet.  They would probably look a lot better if we trimmed them.

Here's another full picture of his DAFO's.  Can you believe these things cost about $1,000?  Crazy!  They're just plastic and Velcro.   They are custom made, but still...

Carver started a new medication to help with his spasticity.  His legs are still tight and so is his right arm.  We've tried increasing his baclofen dose a couple of times, but it hasn't made a difference.  So, we're now trying neurontin.  He's been on it about a week, and we're already seeing big differences.   I can now 'flop' his legs into an Indian position with ease, and we can easily open his hand and move his arm.  Hopefully this will make a difference in his ability to sit independently and stand.  In the past, he had a really hard time sitting because his legs are so stiff - he wanted to push back to get away from the pain.   This has changed significantly.    His stander still hasn't shown up.  A few of the pieces were delivered to my case manager.  I'm not sure why, it was supposed to be delivered to my home.   So, no stander, yet.

Carver is being scheduled for a VEP (Visual Evoked Potential) test.  This test will be done in the hospital with sedation.  It's much like an ABR for hearing - only this is a vision test.  They will test the brain/eyes response to light.  They look for wave forms.  If the P100 wave form is missing, this would mean that Carver is blind and will not have vision in this eye.  This means that the brain is not receiving any signals from the eye or optic nerve.  If there is a P100 wave form, and it is delayed, then he would just be processing the light slower then normal or delayed.  This will/can improve over time.  This test does not tell us anything about visual acuity, it will just help us understand whether the brain and eye are talking.  We won't be able to test his left eye because it has a cataract and the test would not be accurate.  Right now, I'm more concerned about what the right eye is doing.  This retina is completely attached, but Carver doesn't act like he sees anything with this eye.  So, hopefully the test will shed some light on what's going on here.

Our new eye doctor (Dr. William Park) ordered contacts for Kinnick.  We tried the contacts on Wednesday.  Boy, was that fun!  Not so much.  The second eye took 4 people.  Once they were in her eye, she did just fine.  He verified the prescription +23, I believe.  He is ordering the correct lenses and we should have them in the next week.  He's working on getting the iris put in them.  He has 2 companies that he works with.  We're hoping they'll be able to put the iris on the lens.  Her prescription is so strong and the lens is so thick, that it is possible that they won't be able to add the iris.  We're really praying for the iris.  This iris will help control the light coming into her eyes.  He hasn't been able to complete his visual acuity testing.  We're waiting on some reports from Dr. Trese's group in MI.

Last.. Kinnick and Carver are almost 2!!!  They turn 2 March 29th.  Party plans are in the works.


Anonymous said...

Wow! So much is constantly going on! You are pretty much like a nurse, case worker, mom all rolled into one! Shanon, I can never tell you how much I am inspired by you! You work so hard to give Kinnick and Carver everything that will possibly help them and balance the rest of your family too! We will pray that the iris can get put into the lens and that Carver's vision test goes well. Keep us posted
And can't wait to see the b-day pictures soon!

Anonymous said...

oh ho funny.
My post is about Tristans new DAFO's too!
His are really nice in colors!
I like those.

I'm telling you those babies of yours are so darn cute, and there going to be 2 soon? So is Tristan!

I can't wait to see some birthday pictures. Take Care!

Jennifer said...

I also found that if I use a syringe and slowly squirt the water in while I have the spout of the cup in his mouth it works the same and that way I don't have to take the cup away to put the valve in. I love Carver in his DAFO's. He reminds me so much of Liam, just a lot older! Can I say the head control is driving me crazy??? I am getting impatient. I love reading your blog- you always seem so positive. I have my good and bad days.