Assalamualaikum w.b.t.
Been sooooo long since my last posting in this blog. I had
really nothing to share with you guys on Adam’s feet condition because we just
leave everything naturally and no treatment at all for almost 2 years. Yeah,
you heard me right. No treatment at all.
If you were following this blog since then, you might know
the whole stories on challenges i faced especially the difficulties to get Adam
wear FAB since early stage. To recap, he had tenotomy on both feet when he was
9 months old. We can see his feet corrected after the tenotomy but then he had
relapsed due to non-compliance of wearing FAB. He never successful to wear FAB
while sleeping! The last time we went to HUKM to cast his feet was 2 years back
and the casting can only last for 7 hours before he fussed, cried and screamed
out loud until we finally got the casts removed and i was pretty sure he felt
itchy actually.
Our stories are very much different with Zarina’s. I know
things were very hard on her as well but she’s luckier because Dania did not
make fuss when wearing FAB, she can comply with FAB wearing schedule and it was
very different from my Adam which was so reluctant. While Zarina is 100%
pro-Ponseti method in treating clubfoot and even flew to Bangkok most of the
times, i was quite flexible in any method as long as it can ease Adam. And compared to her, i think i gave up easily
and i lost due to many factors.
One of the factors is my location. Finding a good doctor
practising Ponseti is very hard especially when you live in JB or outside KL.
Adam’s treatment at Hospital Penawar was until he’s 4 months old before we
decided to continue treatment at HUKM under Zarina’s suggestion. Hospital
Penawar uses traditional method by “squeezing” (forcing) baby’s feet until you
can’t stand to see your baby face turned blue by crying out loud and they are
using fibre casting. I cried every time they casted Adam’s feet, that’s why i
feel it’s to move on..
Since we continued
the treatment at HUKM, we travelled to KL on weekly basis and i nearly got
fired by my employer because i’m taking 1 day leave every week for almost 3
months. Too bad we don’t even have 1 Ponseti certified doctor (am i right,
Zarina?).. and i can’t afford to do treatment abroad to Bangkok like Zarina or
nearest to my place Singapore (the currency exchange is crazy, man..), and that
was the other factor. I saw someone sharing her experience in facebook clubfoot
Malaysia group that she went to Iowa for treatment. I must say she’s very
lucky!
Financial is another factor. Even though we had bad
financial times for few months but of course as parents we can’t bear to see
our child left untreated and we will try to sacrifice everything for them. That
was why we opted for HUKM. The cost for treatment at HUKM is actually almost
same with earlier treatment at Hospital Penawar considering toll fees and
petrols. Luckily we have an aunt stayed in Kinrara so accommodation is not a
problem.
Non-compliance of using FAB is the main culprit causing
relapse. After tenotomy, we bought Markell shoes with Dennis Brown bar for
Adam. On the first day Adam’s wearing FAB, he seemed OK with it (because he’s
still infant that time), we saw him crawled, no fussing only mild cry but it
stopped after some times. We were happy thinking maybe we can continue the FAB during
night time. We put the FAB before he sleeps but it did not last long before he
continuously bang his feet on the floor while lying and the shoes will slowly
slipped from his feet. We will then have to tie the FAB again but it never last
long as i told before. So we waited until he felt asleep but failed because he
will bang, bang, bang, bang and bang the FAB, rolling here and there and crying
out loud until finally we left with no choice but to remove the FAB. Once
removed, he will automatically silence and continue sleeping. We tried every
night but failed. Since then we never put FAB on him at night while he sleeps
anymore. But we managed to get him on FAB day time under my care at home.
Unfortunately we don’t get support from others. You know you
can’t expect someone else (except yourself and/or your husband) to adhere to
your wish? The wish is only put on FAB all the day time except during bath time
or diapers changing (which you have to remove for few minutes and put on back).
Maybe people feels hard because it is time consuming to put on the FAB every
time it slipped through the feet. Another thing the bar made from hard metal,
so every time your child crawl, you can hear the metal banged on the floor and
you have to keep yourself away so that the bar won’t hit you.. (tips: i wrapped
the bar with some clothes so that it can minimize damages/injuries). You can’t
also expect childcare centre to adhere to your wish because they take care of
many kids and they can’t possibly monitor your kid only so that the bar won’t
accidently hit any other kids! Unless you are lucky enough to get support from
others, e.g.: maybe the childcare is kind enough to prepare one small space for
your kid with FAB, etc.. but in my case, a big NO-NO. You can easily imagine i
failed to make Adam wear FAB because he didn’t wear it during day time when he
is not under my care and night time when he is under my care, we can’t get him
to wear because of his reluctant. I can only manage to get him to wear FAB
during our weekend outing for 2-3 hours which i’m really glad i did that! But
of course, it does not help maintain his feet and slowly he had relapsed.
I did find any other way so that i can put Adam on FAB at
night. After some research i found Dobbs bar which is compatible with Markell
shoe. You can read my previous entry on Dobbs Bar here. With Dobbs bar, he can moves his legs a bit but we still
failed to make him wear it at night.. too bad.. and there was a time we even
switch to Dennis Brown bar again.
After the relapse, we did seek treatment from HUKM again but
as FAB is the main tools to maintain the feet, we failed again.. it’s not that
we were not strict enough to ensure FAB remains on Adam’s feet every time but
we lost to Adam’s reluctant which will cry non-stop at night and failed by people
surrounds us at day time. the treatment was put on hold for about a year
(because i already gave up at that time)until Adam turned 2 and we went to HUKM
again for casting and hoping to be able to get the feet corrected and comply
with FAB since Adam is growing up. But as i wrote in my 2nd
paragraph, the cast only lasts on his feet less than 7 hours. L so we did not make any
treatment till now..
Adam’s now is 4 years old. This year we will continue the
treatment since he’ll be going to school (kindergarten) by next year. And he’s
started to understand his feet condition which is unusual compared to everybody
around him and show interest to get his feet corrected. He’s aware that some
friends made fun of his feet and he likes when i said that we will get his feet
corrected again so that his feet will be normal like his friends. i hope this
will give him some motivation.. pls pray for us!
I am thinking whether to continue treatment at HUKM (but i
feel very paiseh ler.. because i did not follow appointment schedule) or opt
for Dr Kelvin, KKH Singapore this time? Dr Amnuay in Bangkok is not in my list
due to financial & time factor. Any suggestion?
