I am so, so sorry to the faithful readers of my blog. I feel like a terrible blogger for not
posting any updates in such a long time.
Truth is, it’s hard to find time to write when I am working so much and
trying to raise two boys at the same time.
But, here I am. Finally getting
an update out to you.
Gabriel will be five months old already tomorrow! He is now laughing (mostly for my mom only)
and has successfully rolled over from back to front twice – although I think
the second time might have been assisted by a certain 5-year old who says he
‘might’ have helped! At his four month
check-up, we found out that he weighs 16 pounds!! Technically, he was supposed to have doubled
his birth weight by four months, but since he started out over 10 pounds, I
don’t think three little pounds make much of a difference.
We were given the go ahead to start feeding him cereal at
his appointment. The pediatrician said
it is not really important that he starts eating now, so if he doesn’t, it’s
not a big deal until he is six months old.
Let me tell you – spoon feeding a baby with cleft is an interesting
challenge! I haven’t had much luck so
far with the whole feeding thing, but we are working on it. Because Frank still protrudes a little, I
have had to try to figure out how to get the spoon in his mouth without hitting
Frank every time. I have tried getting
the food off the spoon by lightly scraping it onto the backside of Frank – that
didn’t work. I have tried putting the
spoon in upside down to give him something to press his tongue against since he
doesn’t have a roof of his mouth – that didn’t work either. Truth is, I don’t know if the problem is the
clefts or just the simple fact that he doesn’t like the taste of the cereal and
the process of eating off a spoon. I
haven’t given up; I just don’t suppose I am working at it as hard as I would be
if he didn’t have the clefts. I try to
add as little stress to his life as possible.
I have been getting a lot of the same questions lately, so
since we are in kind of a lull right now as far as surgeries and drama are
concerned, I am going to take the opportunity to answer some of these
questions.
How do you deal with
everything?
Honestly? I just
do. I have a responsibility to provide
my child with his basic needs and to shower him with all the love I have to
give. If I focus on that, dealing is
easy.
How can you speak
about all of it without crying and keep a smile on your face?
I have learned that feeling sorry for him, and thus feeling
sorry for myself, does not help our situation.
It would be a lie if I said I don’t still have my moments where sadness
for his situation doesn’t weigh heavily on me.
I falter, and luckily, I have my husband to pick me up. But the truth of it is, I talk about
everything so much that it just gets easier and easier all the time. I can’t focus on the clefts for fear that I
won’t enjoy all the wonderful moments this child gives me. It’s not fair to him and it’s not fair to me.
How much have his
surgeries cost?
Good question.
Gabriel’s surgeries, so far, have totaled $75,000. This does not include any doctor’s
appointments and if you have followed closely, we have four doctors we see on a
regular basis. The first surgery cost
$25,000 - $6,000 of which was oral medications alone (Infant’s Ibuprofen and
Children’s Tylenol)!!! The second
surgery cost $50,000 – as far as I can tell, $32,000 of that was just removing
the Latham Device. I would like to take
a moment here to say – thank God for insurance!!!! I honestly don’t know what people without
insurance would (or wouldn’t) do. We met
our deductible for Gabriel with the first surgery, so as much as I don’t want
him to go into surgery again anytime soon, I will be pushing to make sure his
third surgery happens this year.
Funny thing about the cost of surgery though. I get postcards in the mail all the time from
cleft organizations looking for donations.
They say that by donating $250, you can pay for a child’s entire cleft
lip and palate surgery. $250!!!! Our surgeries have cost $75,000 and Gabriel’s
palate hasn’t been touched yet. We still
have the palate repair, the full lip repair, a possible additional gum line
repair, possible jaw realignment, and a possible nose job – and that’s if all
future surgeries are a success the first time.
They can do it for $250 – amazing.
What comes next?
What comes next?
We have a couple of upcoming important appointments. We meet with the plastic surgeon on Monday to
see how the progress with the one-sided gum repair is going as well as planning
for the timing of the next surgery. He
will also have an appointment in June with the ENT doc to do a sleep study to
evaluate just how well he can hear. We
don’t really think he has a hearing problem, but because hearing problems are
so common in cleft children, it is better to know now. And then, around 11 or 12 months of age, he
will have his third surgery.
Dr. S has not completely ruled out the possibility of
closing the other side of his gums at the same time he closes the palate and
completes the lip repair. Typically, Dr.
S would do this surgery at 7 or 8 months of age, but because he wants to get as
much growth as possible out of Gabriel’s gum line, that is his reason for pushing
the surgery off until 11 or 12 months.
Additionally, Frank still protrudes ever so slightly from where we
thought he would after the last surgery.
When we asked Dr. S about this, he said ‘Frank is going to do what Frank
is going to do.’ The other objective of
waiting to get as much growth as possible before the next surgery is to hope
the upper gum line comes out to Frank, as opposed to trying to get Frank to go
back to the gum line. The full lip
repair will help put Frank in his right place, but without the gum line
growing, Frank may never be exactly where he belongs. The only thing that really concerns me about
this is just not knowing where Gabriel’s front teeth are going to come in.
How is he
otherwise?
Gabriel is wonderful!!!!
He is so happy all the time!!! He
eats well, he smiles constantly, and just recently he started sleeping in his
crib!!! I had him sleeping in his swing
after the Latham Device was implanted because when he spit up, the formula
would rarely make it out past the device.
Sleeping in a more upright position was the best solution for him at the
time. Now, I have run out of excuses to
not have him in a crib. We started crib
training this past Friday. The first
night he slept for 4.5 hours straight – a long way off from the 9-11 hours he
would sleep in the swing!! Apparently I
was extremely tired when I went up to feed him after 4.5 hours because the next
morning I realized he was back in the swing and I honestly don’t really
remember putting him there!! Saturday
night he slept 6.5 hours straight. I fed
him and put him back in the crib where he slept for another 4 hours. Last night he slept 10 hours straight!!! I am keeping my fingers crossed that the
success continues! Now, if I could just
get my 5-year old to sleep in his bed…
Anyhow, I think that’s enough for now. As the questions keep coming, I’ll keep
providing answers! I will also post some new pics next time. Until then…
