[tri-med] Re: Aimee

Tierney had some apnea after birth (the jiggle me kind, not the 
intubate me kind), she was also unable to latch on, and small for her 
gestational age (42 weeks). (Tierney weighed 6# at birth, but my second 
son was 10# 4oz, so the docs were surprised at her size.) Chromosomes 
were done as a part of a monster work up to determine the cause of the 
apnea and inability to latch. She was in ICU for 6 days and every test 
was pretty much normal (echo, hearing test, ophtho exam, EEG, blood 
tests etc.). She did have an enlarged cisterna magna on her MRI--there 
is an area in the back of your brain where there is an accumulation of 
fluid, hers was bigger than normal, there was some speculation as to 
whether it was even significant...you know doctors and ambiguity. She 
does have some funny looking feet, and hypoplastic toenails, a short 
sternum and perhaps a little bit of a smallish mouth, but these 
physical findings were so subtle, the geneticist at the (huge) hospital 
where I delivered did not think of T18. We got the chromosome results 
back when she was 2 weeks old. They were rechecked by another 
geneticist at Childrens's here in Chicago...there was speculation that 
it may have been another child's blood. The second geneticist did point 
out some of Tierney's more subtle physical characteristics that were 
consistent with T18.

Thanks for the compliments, we completely agree that she is perfect. 
The cells of her soul turned out just right.

Mimi (wife to Doug, Mommy to Reilly 8, Keegan 6 and Tierney T18 8 
months)
Chicago
On Jan 25, 2004, at 1:40 PM, Meierlaw wrote:

> Hi, Mimi:
>
> Ian is "enormous" - that's the word we always use to describe him, as 
> well.
> He's almost six months and he weighs about 18 pounds!!  He seems 
> perfectly
> fine and he is a very good baby.
>
> No, no coup getting Jillian from China.  Special Needs children 
> actually get
> priority in the adoption process.  It took nine months from start to 
> finish.
>
> Dr. David Neal Franz is our neurologist.  He is affiliated with 
> Cincinnati
> Children's Hospital Medical Center (CHMC) here in Cincinnati.  Everyone
> loves him and he is wonderful.  He wasn't accepting new patients, but 
> out
> pedi called him for us and got us in with him.  We find that most 
> doors open
> to us when they find out we have an 18.  Most doctors don't ever get he
> chance to see and 18 alive, much less have one as a patient.
>
> I went to the Tierney website and she is just beautiful.  She looks so
> perfect.  How is it that you discovered she is an 18?
>
> Aimee
>
>
> ----- Original Message -----
> From: "Mimi Noonan" <miminoonan@xxxxxxxxxxx>
> To: <tri-med@xxxxxxxxxxxxx>
> Sent: Saturday, January 24, 2004 2:44 PM
> Subject: [tri-med] Aimee
>
>
>>>
>>> Aimee,
>>>
>>> Both your daughters are so beautiful, and your son too. He looks
>>> enormous, I hope his health is good.
>>>
>>> It must have been some coup getting a special needs child out of
>>> China. A friend of mine tried to do it, and could not. My brother has
>>> an almost 2 year old from China, gorgeous child.
>>>
>>> Who is your neurologist? Is he/she at Children's in Cinti? We spent
>>> some time there with our oldest son who was an atypical pediatric
>>> epileptic. It took some searching, but eventually we found a
>>> neurologist we loved.
>>>
>>> I am glad you found this list. I took 5 months for me to join. 
>>> Tierney
>>> does not have many health issues (normal heart, feeds by bottle, no 
>>> O2
>>> or apnea), so I thought I would not feel comfortable here. I was dead
>>> wrong. I so value the friendships I have made here. The list
>>> represents all the flavors of trisomy, some partial, mosaic, some
>>> doing well and some who are struggling or have lost the battle. It is
>>> mostly Moms who write in, and all moms have things in common,
>>> particularly those with special needs. There are many, many kids like
>>> Rachel, who have exceeded all expectations and we all rejoice 
>>> together
>>> in the victories. We also console each other through loss or just the
>>> daily grief of life with a disabled child.  Some of the "full 
>>> trisomy"
>>> kids stand, take some steps, use sign language...I am so glad their
>>> families remain on the list to give me ideas to help make Tierney's
>>> life better. Also, many of the partial and mosaic trisomy kids have
>>> issues incredibly similar to ours, and their families have worked
>>> through them. There are some AMAZING  people on this list, and wisdom
>>> that you will not find anywhere else.
>>>
>>> We lived on the opposite side of Cinti, I worked in Milford. I found
>>> it a very easy town to live in, it was like a half price sale 
>>> compared
>>> to New York City where we started out our marriage. I found it to be
>>> more than a little bit too conservative for my tastes, but the 
>>> friends
>>> we made there were bleeding hearts like us.
>>>
>>> Thank you so much for sharing your wonderful family with us.
>>>
>>> Mimi (wife to Doug, Mommy to Reilly 8, Keegan 6, and Tierney T18 8
>>> months)
>>> Chicago
>>>
>>> To check out Tierney, click on the link below.
>>>
>>> http://homepage.mac.com/doug.grant/PhotoAlbum27.html
>>>
>>
>>
>>                   Building ___ooOOoo__ Rainbows
>>                        www.trisomyonline.org
>>                   Families Helping Families On-line
>>
>>
>
>                   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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