[tri-med] USA Alex update

What a fun day it's been. Not.

On the positive new front, the antibiotics are working. Alex's cough is no
longer yellow productive. His breathing is no longer labored. A cough
remains but that will clear with time. I no longer have to listen to him
sleeping.  :0)

Onto the "in one hand positive, the other negative" portion of our program.
We went to Sylvan for the Reading Assessment results that he took last week.
Now, we knew that he was behind (duh, or we wouldn't have taken him to
Sylvan) but seeing the black and white.....well I cried while talking with
the director. His scores were all basically 4.9 grade level. That means he
is 4 years behind.  :-(  They say they can help and hope to have a spot open
for him in the next 2 weeks. This particular Sylvan services 200 children.
The projection is that he needs from 265-277 hours of instruction to get to
grade level. At 2 times per week--1 hr per session, it would take approx. 2
years. Obviously that isn't good. During the summer we will be going 6 hrs
per week. As yet to be determined the school year schedule.

I told the director and Jim that I was kicking myself for our coasting along
for the past 1.5 yr since Alex's tutor of 5 yrs moved. She looked at me and
said, "Time's wasted on Coulda, Shoulda, Woulda. Energy is wasted. Take that
time and energy and use it do help Alex." I thought she was channeling my
husband!!!!! lol  She went on to tell me that she believes everything
happens WHEN it is supposed to and that now is the time Alex was to be at
Sylvan. She also claimed to be impressed with some of the test scores being
as high in some areas as they were and that was an indication of the work
that has been done with Alex. That made me feel a little better.  :0) Eased
some of the soreness from my self-butt kicking.

We've yet for figure out financing but are going to find a way. As Jim said,
"We decided to become parents. We parent our children and this is part of
that. It's what we will do". I still have that extra kidney for sale.  :0)

Later in the afternoon was our every 4 month visit to the pediatric
endocrinologist for the GHT (growth hormone therapy) follow up. Due to last
Dec's bone age showing bones starting to close and his nearly lack of growth
in the past 8 months the ped endo ended the treatment. There could be bone
damage side effects using the GHT if the ephysis in the bones is closed.
Alex was VERY disappointed. He was hoping to get a bit taller. We had hoped
for 5' since that seems to be a minimum height for accommodations for the
adults of the world (cars etc).

I feel like I've been kicked in the heart today. Things just hurt.

Looking at the rainbow.....we can help the reading. He may grow a few more
inches on his own and the ped endo said reg physical activity can help
boost/insure that. Medically we're doing great with Alex which makes me feel
a bit silly to be so worried about his future. However, it's not silly
because Alex's happiness may hinge on being able to do what he wants to the
best of his ability. I'd be a poor mom is I didn't want the best that Alex
can be to be available to him. He needs the ability to survive to the best
of his ability.

So off I go on the school. I'd like to know what they have to say since last
year when I was told his reading level was lower 5th grade and didn't agree
with that then. A birdie told me tonight that under IDEA spec ed students
may not be more than 2 years delayed or something or other.........need to
clarify that.  :-)  So is the school "boost" their scores???????

Long day and tired. Off to bed.

Michelle mom to Alex (14,partial trisomy 14 mosaic) and Molly (11)
MichiganUSA


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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