we are home!

[Guest guest]

Thanks to everyone who wrote to us! came home on Friday and is doing

great. I knew he would, but I was so stressed out! He was out of his shoes for

2 days because they had to put the IV and other equipment in his foot, so I was

really nervous about that and kept checking his feet. They look just fine, but

he hated when I put his shoes on yesterday, so I was nervous they had relapsed

enough to make a difference, but he slept fine. I think he just hated having

them on again! The surgery went great. It was to repair his hypospadias and

chordee, which basically means his penis (if they let me say that) was curved

downward and the urethra was not fully formed so the opening was in the wrong

place. This was suppose to be corrected in 2 surgeries but the dr. was able to

do it in one with only a 15% chance of another needed.

He was born with several different problems besides the clubfeet. He had an

imperforated anus which was fairly easily corrected with one surgery when he was

16 hours old. After that, he had breathing problems and was found the have

tracheal mallacia and tracheal stenosis. The mallacia will go away eventually,

although that is what was bothering him after this surgery. It just causes him

to sound like a dinosaur or pigeon! The tracheal stenosis was fixed through

a surgery where they dilated his airway when he was 4 days old.

also wears glasses and has since he was 4 months. They thought his optic

nerves were small, but are unsure now because being extremely farsighted can

make them appear small, so we are not really sure on this yet, but the glasses

are really helping him focus.

He had an MRI last Weds. on his brain and spine because of his anomalies as well

has hyperspaticity in his muscles mainly in the neck, back, and hamstrings. They

found that his pons located near the brainstem where slightly atrophic. This

part receives and sends messages to the rest of the brain, but 's gets a

little messed up when they come through; therefore his movement and coordination

are slightly off. This shouldn't cause a problem in the long run, but will

cause him to have a slow start and difficult until he learns a new skill. He is

finally rolling from his tummy to back and with his shoes on from back to belly.

He can sit for a limited amount of time. He is getting frustrated though

because as an almost 8 month old he wants to do more.

They also found a syrinx cavity in his spine. This is basically fluid where it

shouldn't be, and causes weakness in his arms as well as other things. We now

know why he has trouble propping on his belly and when sitting. We are meeting

with a neurosurgeon to discuss treatment such as shunting or others. We are

trying to avoid a shunt because of their failure rate, so if anyone knows a

great site to find doctors with certain qualification that would be great. One

I found is in Iowa City, so we may be going there anyway (We were going to go

for his feet, but found another dr closer). is currently receiving PT

and OT once a week each for one hour at home through First Steps.

Sorry this is so long, but Kori you asked about 's story! At least you

got a medical lesson that covers about every body part!

Thanks again for all your thoughts and prayers. This site has helped me so much

to get through everything. I know we have been through a lot with , but

we are so lucky because everything he has is fixable so he will have a happy and

productive life!

11/19/04 " No more surgery! "