November 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.
Amanda 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.
Never 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