[tri-med] Re: (no subject)

Hi Anna and welcome to the list. Congratulations on the birth of Faith and I 
hope you will have many years to spend with her. My daughter Nejoud is a full 
T-18 and we were given the same discouraging news from the doctors when she was 
born. We were told that she will not live past 3-months. I started to make 
funereal arrangement, I kid you not. When Nejoud was 6-weeks old her GI doctor 
suggested the G-tube surgery and it was the best thing we ever done. She only 
feeds by a Mic Button G-tube and we use a pump to deliver the formula. She 
started gaining weight and constantly getting better. Respiratory problems is 
the major issue with Nejoud. We see a pulmonology doctor for all her 
respiratory issues. She is a thriving 3 years and 3 months now. 
Every kid with Trisomy diagnosis is different as you will find out. Their are 
no two kids alike. This list was very valuable to us over the last 3-years. We 
learn a lot from each other by sharing our stories. I hope you will find it 
helpful as I'm sure you will. Welcome and good luck...

Did you know before birth that you are going to have a T baby?

Mohammed (Father), Rana (Mon), Hamzeh (Big brother 4 1/2 Yrs) Nejoud (3 Yrs 
and 3 Months and T-18), And new arrival Saja (2-months)


________________________________
From: LANCE Turner <turnerlaal@xxxxxxxxxxxxx>
To: tri-med@xxxxxxxxxxxxx
Sent: Friday, June 26, 2009 12:54:33 AM
Subject: (no subject)

Hello everyone.
I just got  on the list and am so encouraged by all your stories. It is so nice 
to not feel alone.
We have a beautiful 2 month old trisomy 18 daughter, Faith. She was born on 
April 20, 2009. We never thought we would bring her home let alone have her 
this long.  Since most of the physicians gave us a poor prognosis, we were on 
pins and needles the first month. Just waiting for the day that she would no 
longer be with us. But with much hope and prayers we are enjoying her second 
month. 
We are now at the point of looking at our daughter and trying to find ways to 
improve her quality of life. Most of the doctors we have encountered are just 
waiting for  the day she dies. We are not we want to be more proactive so your 
stories have given us much hope.
Faith has a heart defect. An ASD and a large VSD. We are seeing a cardiologist. 
Her last echo showed that a muscle flap has developed in the right ventricle 
which is protecting her lungs for now(preventing her from going into pulmonary 
hypertension). We are not sure if they will consider her for heart surgery, but 
my understanding is that long term something will need to be done.
She is also still be fed through an oral gastric tube (initially they tried to 
put in a nasal gastric tube, but her oral passages were too small and the tube 
would not pass) We have never been asked about a peg tube or button, but have 
heard many of you mention it. Curious at what age your children got one.
Faith also has a rocker bottom foot (form of club foot), and one eye is fused.
We hope to learn from you and are looking forward to all the support.
Anna, mother to Faith 2month old T18, Leah 2 1/2 yrs, Austin 12
 
                  Building ___ooOOoo__ Rainbows
                      www.trisomyonline.org
                  Families Helping Families On-line
                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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