Dominick Update from CarolG.: Surgery,Sensory and everything in between

February 7, 2006

Well it has been a little while since I updated everyone so here it

goes. We'll start with the good stuff and move on from there.

Dominick will be 17 months old on the 10th and he is still growing

quickly. This is a pain when it comes to clothes,lol, but has proven

to be a good thing with his headshape. After watching the growth

changes during his last growth spurt make his head look worse, I am

now starting to see this growth spurt filling in a few areas that

make it look better. I mean he is still a bumpy headed little guy,

but the overall roundness is improving. Maybe with more growth some

of the bumpy areas will look smoother too. I wish I could fast

forward a couples of months,lol. While at the eye doctors office,one

of the nurses called all the front office staff over to look at him,

because in her words " he was just perfect, so handsome " . Yes I was

beaming,lol, but also thinking if they only knew...HaHaHa!

We are working hard on the sensory processing disorder therapy. Still

teaching and using sign language with great results so far. We have

ordered a wonderful set of DVD's(reccomended by his OT) for him

called Signing Time for babies. They are designed to appeal to and

teach babies under 36 months old and have babies using sign language

on the DVD's so they want to watch and immitate. They also have a

full series for ages 1-8 if you have older kids who want to learn

too. We'll be getting these too, but they are a bit pricey so a

little at a time. I hope to get the entire series eventually. If

anyone wants info on them let me know and I will give you the link to

the website. I was getting a bit discouraged at first but Dominick

now signs to me when he is hungry and when he wants a bottle and when

he wants more. It has been great to know what he actually wants when

he is fussing sometimes. On top of that he is working really hard on

thank you, who could ask for more,lol. I have put together a bunch of

stuff to help with his tactile issues. Like when he falls down

outside he can't get up because he won't touch the ground, it's

sounds funny but it's really sad to watch him panick. I have three

bins and I have one full of dried rice, one full of dried beans and

one I am going to fill with sand. I have also bought a ton of

playdough. He will start to learn to put his hands in each thing to

try and desensitize him to the textures. We have special times during

the day to give him extra input to his senses. He needs and craves

this. Because he has proprioceptive(wires are not sending signals to

the brain from muscles, skin, & joints properly) we do

jumping,stomping, pushing, and pulling. Because he craves senosry

input and will do things like bang his head or hit himself just to

get it, we dance to loud music, we jump off the couch into pillows,

we spin in circles, and we have brisk rub downs with towels. We are

even getting one of the big trampolines with tax money. For the times

I know he needs to organize his senses I play different music, he is

very fond of the blues and loves Pachelbel's Canon in D major. His

sense of rhythm is amazing, he truly feels the music. We are still

waiting for the new PT evaluation for his left sided weakness. His

social issues are a bit more challenging but we mainly work on

getting him to feel comfortable when not at home. He has also started

having huge issues with having any straps on him, not good

considering the highchair and carseat. I think we are on the right

track here, but I know I have a long road ahead and that my little

man has an even longer one.

Now to the vision problems, we went to Virginia Eye Institute in

Richmond again this morning for Dom's recheck after patching his one

eye for 4 weeks. There has not been any good change in his vision or

his crossing and the fact is that if you cover his weaker eye the

other eye is still crossing too much still. We have scheduled his

surgery for March 1st on both eyes. I am a nervous wreck and will be

until it is done and over. The chances of anything happening to his

vision or to him are very slim, like 1 in 10,000, but still the

thought of him being put to sleep makes me nuts. The biggest risk of

the surgery is having to have another surgery down the road to

correct any overcompensations or undercompensations the body might

make. It is an outpatient surgery so at least we can bring him home

afterwards. I will let everyone know what's going on as we get

closer. Just one more worry for the time being, but I have great

confidence in this doctor and I know it must be done.

I still thank God everyday that he is here on earth.

CAROLG

February 7, 2006