February 10, 2005
Hello all – this page is long overdue for an update! At
the time of my one and only writing, Robert was almost 18 months old, and
cruising furniture. He was receiving PT and OT. Now, he’s approaching 4
years old (in 4 months), and is a walking, running, talking little man!
He’d had 5 surgeries to date at that writing. He’s had one
more since, in April of 2003, and that was to further open up the web
space between his right index finger and thumb. He has 3 fingers and a
thumb on each hand. He also had ear tubes placed. At about this time, we
also started speech therapy, but I must say, I wasn’t overly impressed. He
didn’t seem to make much progress. I think he just wasn’t ready to be
Just days before he turned 18 months, he took his first
steps. It was wonderful! He didn’t really do a “four-point” crawl until
after he walked. He was more of a butt-scooter.
Well, since then, we’ve moved, and are now in the Virginia
suburbs outside D.C. The school system is first rate here, and they have
wonderful programs. At 2 years and 5 months, Robert had about 10 words,
and about a dozen signs that he was using. We took him to be evaluated for
speech services. They, of course were granted, and after several more
months of meetings and paperwork, he started speech therapy at around 2
years and 9 months old. That was a year ago. It was just after that
initial meeting with the school that his speech started to explode.
Because he was eligible for speech services, he was also
eligible for a preschool program. I was hesitant at first, but then
decided it would be a great, immersive environment for him to work on
speech, as every kid in the class of 10 has their own speech goals. There
are several other classmates whose only needs are speech also. (At the
time of his evaluation, he was only deemed eligible for speech; his fine
and gross motor skills were age-appropriate.) He started last spring at 2x
a week, and this year he goes 3x.
Now, at his recent marking period evaluation, he’s not
eligible for speech services anymore, and his speech is considered
age-appropriate. Yahoo, Robert! He speaks in full sentences, and has a
He loves school, and his teachers and classmates love him!
His teacher and her assistant are wonderful, gifted women and we are
blessed to have them. They report to us that Robert is a leader in the
class, one of the more talkative (we sometimes find ourselves longing for
the days before he was talking!), and even has better fine motor skills
than some. I drive him in the am, and he rides a bus home—one of the
highlights of his day. For next year he retains his spot on the grounds of
adaptive skills like snapping, zipping pants, buckling (although he was
BARELY eligble at the time of eval. in Dec., and now can undo his belt and
pants for the bathroom all by himself) and gross motor work (mostly
balance issues like hopping and jumping and such). I’d also like to
include writing skills in his IEP when we do it this month.
Something else to report is a wonderful program at the
school that Robert’s teacher (Ms. Lyn) worked on with the school guidance
counselor. Ms. Lyn is on a character-building team within the school and
she and I put together a “Robert flyer”, on the kids’ level, explaining
why he’s different as well as why he’s the same. The counselor took it and
read it to every class in the school, as a form of “reverse
mainstreaming”. As soon as the day after she began her rounds, Robert had
kindergarteners approaching him on the playground to say “hi” and
introduce themselves! A far cry from a wondering stare. Robert picked up
on it right away, reporting that “I have friends out there!” Because we’re
at our districted school, Robert also gets recognized at our neighborhood
playground, and around town. He and Brian were approached at Home Depot at
one point by a little girl who explained to her dad that she went to
school with Robert. We’re so pleased that the school has done this. They
plan to do it with other kids, too.
On other developmental fronts, he’s moved from his toddler
bed to a big bed, and also conquered the ever-dreaded potty training over
the summer. YAHOOOOOO! We thought he’d never be interested, but then the
light bulb went on and we began making progress. Just like other parents
told us he would.
He can spell his name out loud and is starting to write a
few letters. He loves the alphabet song, “head shoulders knees & toes”,
and the itsy bitsy spider. He is into Thomas, and also likes Dora the
Explorer (came home the other day and answered my “thank you” with “de
nada”! Floored me!), and a new show called Lazy Town; he is always
pretending to be Sporticus.
He LOVES the computer, which he really discovered in May
on a trip to Grammie Pat’s house in Florida. We use laptops, so the mouse
tablet is not really great for him, but he learned to mouse with their
desktop computer and has been discovering new things every day since (we
attached a mouse to my computer as soon as we got home!). His favorite web
sites are Playhouse Disney, Nick Jr., and Noggin. He’s our little wiz kid.
Next year, Brian wants to teach him how to use Quicken! ;-)
While his speech is great, he still suffers from standing
fluid in his ears. His tubes fell out about a year ago, and so it looks
like he’ll probably need another set soon…he’s been getting ear infections
fairly regularly. We’re toying with the idea of trying to coordinate a
hand surgery to open up his index-thumb web space on his left hand as long
as he’ll be anesthetized.
Well, I think that’s about it at the moment. We’re so
proud of our little guy, and so blessed to have him!
|Robert (at the time of this writing is almost 18 months)
was born via C-section after 39 weeks of a completely joyful and
uneventful pregnancy. He was 9lbs., 5 oz. and 22 inches long. He is our
first child, and he is "happy" personified! We did not know a thing
about his medical condition until he was born, but, along with the rest
of the families here, consider ourselves experts on the subject! Robert
has amazed us with how adaptive he is...uses his feet like a second set
of hands. And we thank God for how resilient he is after surgeries.
Robert's first surgery was at 4 months old. Dr. Anagnos of UNC Hospital
separated out his thumb and between his middle and ring fingers on his
left hand, excised his pinkie and thumb nails on the right (they were
yucky and cutting into his hand), and separated between his second and
third toes on his feet. Robert was born with Type III (the worst) hands.
His feet were also quite curved, with a cleft on the bottom. The Dr.
felt that by doing this early separation on his feet, that he'd have an
easier time putting weight on them when he started standing and
walking...he was right! They've flattened out a lot since Robert's been
His second surgery was his cranial surgery at six months. This was a
biggie...very scary...so many unknowns! But, we all made it through just
great. Robert came home on the 3rd day after surgery...and we were told
to expect five days in. Whatta guy! He looked like Charlie Brown - a big
swollen head. But, this went down of course. One of the most memorable
parts of that experience was having to SCRUB his stitches (to get them
dissolving and also to avoid scabbing)!! Yikes!
Surgery three was on his right hand - separating thumb and
middle/ring - and was at about 8 and a half months.
Surgery four was back to his left hand - separating index and middle
- and was just past a year old.
Surgery five was on his right hand - separating index and middle -
and was just recently at 15 and a half months.
Robert has particularly great use of his left hand...since this one's
been "ahead" of the right from the start. He can hold lots of things.
He's also been pulling up and "cruising for several months now...since
right around 13 months...since he got his bandages off after surgery #4.
He's very close to walking we think...he'll take a couple of steps
between furniture. We hope by Christmas, if not before! He's 30lbs., so
we're looking forward to not having to carry him everywhere!
Our family was written up in our local newspaper in March '02.
Read the story here.