12, 2009, today we are celebrating Amanda’s 2nd
birthday. This year’s theme is Dora. It can’t
be Winnie the Pooh again this year Daddy! I’m
not a baby anymore; I’m a big girl now!
Mommy says next years party
will be Tinker Bell, that is if Amanda agrees to that!
How time flies! I remember Amanda’s
1st birthday so well. This year we had quite the gathering.
Amanda’s friends from her daycare came to celebrate.
Amanda wore one of her prettiest dresses and was eager
to have her friends celebrate this special day.
At times like these her mom
and I sometimes forget about her trisomy 18, that she’s
a special child, an incredible gift. She is just Amanda,
our baby girl, a beautiful and happy baby girl.
We are blessed with the fact
that Amanda has had such good health this past year.
No major complications except for one incident. A few
months ago she had thrown up some food and we took her
to emergency at the advice of an on-call nurse from
the Home Care services of the local children’s
hospital where we take Amanda.
They discovered, after several
scans that she was very badly constipated. It was decided
that all she needed was an enema so an emergency room
nurse gave her one and that’s when the problems
started. She started to bleed out. She was given a transfusion
and was admitted into the hospital. A tube down her
throat, IV’s etc…. The doctors were talking
about surgery to find out where she was bleeding from.
A day later she seemed to stabilize on her own. They
never did find the source of the bleeding, if there
actually was any. We realized later that it could have
been due to the force of the enema, an enema that would
be given to a child without this condition (T-18).
Well Amanda came through all
of this all on her own, she healed quickly and after
a week we went home. She was back to her old self. My
wife and I discussed this and realized that we really
need to make hospital staff more aware of how to treat
Amanda and that they need to be gentler with her due
to her special condition.
Just two weeks ago Amanda had
her follow up visit with her cardiologist and we were
told that everything is going well with her heart and
that her hypertension is under control, she still has
a very good balance in this area.
Every winter, on a monthly
basis Amanda gets her synagis http://www.synagis.com
vaccine. This year she also received her H1N1 vaccine.
has also been going to a weekly therapy session, 2 hours
every Friday where a Special needs Educator uses different
stimulation techniques on her. This has helped her so
much. Now she pays much more attention to things around
her. She enjoys playing with toys and pays more attention
to us and her surroundings. We call this her Spa day!
We deal with different situations on a day by day basis.
If there is a problem we deal with it. We do not look
far into the future, not really knowing what it will
bring, but we do know that whatever the future holds
for Amanda, we will love her totally, without any doubt
that she is our little girl and needs all our care and
love in order for her to thrive. We have faith that
she will be looked after for us here now and we know
that the day she moves on to that better place she will
be greeted with care and love as well.
despair, never regret, because your child, despite her
condition, has it for a special reason. Give her all
the love and care you can and love her unconditionally
like she loves you.
I believe that we will celebrate her 3rd birthday, and
more. I look forward to sharing many more happy and
not so happy stories with you. I hope you get positive
inspiration from this story and us, her parents as well
as our special little girl, Amanda.
We would like to share with you some videos we have
of Amanda, we update it every once in awhile. Please
visit and leave us your comments. Click
here to view the videos.
Eric Cugurs, father of Amanda
Esmirna Lopez, mother of Amanda
to Trisomy 18 Stories
-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.