You know, I really thought there would be an end to this blog as
soon as Gabriel turned one. When I found
out Gabriel would be born with cleft, everyone kept saying, ‘don’t worry, he’ll
be all fixed by his first birthday and no one will ever know.’ If I could go back in time and tell the
person ‘I was then’ what the person ‘I am now’ knows, I would tell her to
prepare for years and years, and don’t get your hopes up that it will all be
‘fixed’ in one year’s time.
As you know, if you’ve been following this blog, there is
still a hole in Gabriel’s palate – even after the four surgeries he had last
year. I had been very nervously waiting
for January 7th to roll around when we were scheduled to see his
plastic surgeon again and would find out if there is another surgery in our
immediate future.
Well…there isn’t!!!
Not in the immediate future, anyhow.
Gabriel went through so much in his first year, and because of the size
and location of the hole, the surgeon feels that putting him through surgery
again would be no good for him and the hole won’t stay closed anyhow. Additionally, the surgeon feels that his
palate is too short and needs to be lengthened, so he really needs to grow more
in preparation for that. So, we are left
with a hole. And what do we do about that,
you ask?
We plug it.
Gabriel’s orthodontist, Dr. W., has made a new appliance for
Gabriel’s mouth called an obturator.
This looks much like a retainer with no wires and has a bumped-up part
on it that fits into the hole. We get
the obturator to stay in his mouth by securing it to his new palate with
Poligrip – yep, the glue-like substance used for keeping dentures in place.
Now, this new appliance has its good points and bad
points.
For the good –
Gabriel can finally eat and drink without any food or milk
coming out of his nose! This has been
pretty fantastic! Certainly cuts down on
the number of Kleenex used to clean up the world’s most disgusting sneezes!
Also, the obturator gives him an actual full palate, which
should greatly improve his ability to learn to speak.
Now the bad –
The obturator won’t grow – this means that he will have to
have a new one made every 3-6 months to keep pace with his growth. Dr. W. thinks we will likely go through 4-6
of these appliances before he has his next surgery. Every time one has to be made, a couple sets
of impressions have to be taken, which makes Gabriel scream like the poor child
has been put in an iron maiden or some other form of medieval torture device.
The obturator requires cleaning. I have to take the appliance out of his mouth
every 7-10 days to give it a good cleaning as too much yuck under there could
destroy the tissue of the new palate.
Gabriel is not fond of this, as you can imagine. Part of the problem is that when the
appliance is in his mouth, the tissue around the hole will automatically start
attaching itself to the appliance, so when I have to take it out, I cause
tissue to tear and bleed. I have found
that dealing with this is actually worse than turning the screw in the Latham
Device. Never thought I’d miss the ‘good
ole days.’
The obturator doesn’t always like to stay in. On three occasions now, for whatever reason,
the appliance has mysteriously removed itself from Gabriel’s mouth – causing
mass panic as we search our home and grandma’s house hoping no animals have
eaten it or no one picked it up and threw it away, not knowing what it was.
Lastly, we are now making more frequent trips to Michigan
again to visit Dr. W. and his staff. Not
that we don’t love them – we do – but now Gabriel screams at the mere sight of
any of them. It’s great…
In other news, at the repeated request of Gabriel’s doctors,
we contacted First Steps (an organization in Indiana who deals with physical
and speech therapy for children under the age of 3) in the beginning of
January. After being evaluated, it was
determined that Gabriel needs both physical therapy to deal with some delays in
his gross motor skills and speech therapy, as he is still not speaking and not
really even babbling as he should be.
He started physical therapy a couple of weeks ago and it is
just amazing how quickly he is progressing!
He used to army crawl using only his left arm and right leg, but is now
crawling (very slowly) on all fours. Our
focus for the next week is getting him to pull himself up from sitting to
standing and taking some steps on his own.
His therapist thinks she will be done with him in just a couple of months
and then we can move on to speech. In
the meantime, his ear doctor wants us to start teaching him as much sign
language as possible.
I have learned that it is nearly impossible to learn sign
language from a book and have decided that I just need to breakdown and buy a
video. What I have managed to learned and
then taught him, he has picked up on very quickly. He signs milk, eat, more, all done,
night-night, and bye-bye. He also has
become really great at shaking his head no!!
We are working on nodding yes.
I can certainly tell you that life has not been dull in the
Hillegass house, and hopefully reading this will help you understand why I have
been so pokey about updating our blog.
It’s funny. I was so excited to
not have to have another surgery for a couple of years, and yet, now we appear
to be busier than we were when going through all those surgeries last year. Some people are just never happy...:)
So…to the ‘me then’, from the ‘me now’ – Hold on to the seat
of your pants, Sister. This is going to
be a long, bumpy ride. You will, from
time-to-time want to get off, but believe me, it will still be the greatest
ride of your life!
And, a couple pics to make you smile...Ignore my hair in the first one - I have no idea what was going on.
