Our Journey
with rehabilitation:
So now we
know Tala’s condition.. it sunk in.. now we need to swallow all the pain and
all the sense of how unfair the situation is and get up and take action..
Except that
“where should we start?” this area is very shady and dark and basically a
taboo..
We started
by calling Dr Nasser Gamal, Tala’s paediatrician who advised us to contact a
genetics doctor..
At this
point I didn’t know what to ask, Tala’s case has no name so I didn’t even know
what to look for on the internet. I tried reading about chromosome 9 but I all
I can find is a condition called trisomy, which means that chromosome 9 has
three arms instead of 2 which was not Tala’s case. Tala had two arms but one of
them had genes deleted completely and genes duplicated..
Let me
explain this as simple as possible.. each person has 46 chromosomes in every
single cell of your body. Each chromosome is made of two arms.. every arm
carries very specific genes.. Genes are like a computer code, they have to be
very very accurate and specific for each person. These genes control every
single detail about you.. from how you chew your food to the color of your
eyes, to how you control your movements.. every single thing that makes you who
you are.. and just like any computer code, one single change in this code will
mess things up.. so having extra genes or gene deletion affects your whole
system.. depending on which genes are duplicated or deleted, certain areas in
development are affected..
With Tala
she had both, genes duplicated and genes deleted..
We went to
Dr Ahmed Darwish (genetics doctor) who advised us to take one step at a time a don’t jump to conclusions and
never ever compare Tala to other kids.. compare her progress to where she was
and where she is now..
This sounds
easy but it’s not.. It took a lot of practice to stop comparing her to others..
this was four years ago and I’m practicing..
Then he
told us that different genetic disorders have similar symptoms but to different
extents so he advised we read about other cases and observe Tala very closely..
We started
our rehabilitation centers hunt..
Searched
the internet, asked doctors where to go and there were very limited options..
Now here is
my advice to you from my experience with all the therapies we’ve been through..
1) Keep a journal about your child and
write in it every single detail about your child.. everything you observe no
matter how trivial it is..
2) Keep track of the dates, when did
you start therapy, when did you run labs and staple the results..
3) Download from the internet the
milestone developments checklist and follow your child’s development
4) Attend therapies and ask doctors how
you can help your child at home.. you can even videotape yourself at home
working with your child and show it to your therapists and see if you’re
working correctly or not..
5) Read a lot about your child’s case,
find blogs of mothers with similar cases and see what they did.. learning from
mothers is the best way to learn..
6) Try to buy books about games and
activities that you can do at home..
7) Take your child out and play
together.. arrange play dates with your friends children.. people who know your
child’s case will learn with you how to deal with your child..
8) Take short breaks from all the
therapies and be a mother.. just a loving, caring mother who loves her child
the way she is.. feeling loved and accepted by you is the most important thing
that will push your child forward.
9) Take pictures and videos with dates
of your child doing new things so you can go back to these videos and see how
he’s become different..
10)
Ask
for help when you need it.
