Update on Aidan and Devlin

April 12, 2002

Hi all,

Well we went to our follow up clinic and I got Devlin into the cardiologist

the same day and time as Aidan (whew!), so that's taken care of.

The docs told us that the boys are not developing normally......duh?, and

that they will never catch up....this cannot be attributed to being a preemie

nor can it be blamed on the TTTS (twein to twin transfusion syndrome). They

have to work very hard to do things that come easily to other children and

they do not think that this will ever change. I guess I knew that

already....but it was very difficult to hear....we always had the hope that

they would......

They have very limited understanding...that of a 9 month old.....or less! No

expressive as they don't have the understanding. They said that they will

continue to learn and will not stop learning...but that everything will come

hard for them.....He said that we need to have them in speech more often, but

we can only get appointments every 2 months and they have been making the

boys share an hour long appointment! I don't know how to help anymore! I

feel so sad and disappointed and guilty for being disappointed. ..... *sigh*

Does this mean that they are retarded? I am just feeling so very defeated.

Will they ever talk? we just don't know!!!! I am havinga very hard time

accepting all of this.....I don't know why....I have known all that they said

for a very long time! But it is hard. I just wanted to vent a little....and

tell you all that the heart problem is now being watched!

Thanks for listening,

,

Mom to Aidan & Devlin, 30 weekers, now 2 years, IUGR, TTTS, Apnea

(resolved), Bradycardia (resolved), ROP (resolved), pulmonary Stenosis,

intrahepatic portal shunt (liver now resolved), delayed in every area (

global delays), speech delays...now looking into apraxia......

But HAPPY, BEAUTIFUL baby boys.....a constant inspiration and source of joy

to their parents.

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