[tri-med] Brendan T-13


Hi all 
 I guess it went about this backwards Let me tell you all about Brendan first:
       Brendan Lawrence Rooney was born 08/02/01  at 3:15 am a very typical 
pregnancy and labor.  During the delivery when his head was delivered they 
found the cord wrapped around his neck 3X.  After getting him out they saw 
that he had extra digits on both hands and one foot, when they listened the 
his heart they heard a murmur.  The doctors took him to the NICU but they 
were not equipped to have him there for an extended period of time so they 
transferred him to Westchester Medical Center to the NICU there.  When he got 
there they diagnosed he with T-13.  He has never need oxygen or any assisted 
breathing.  His lungs are fine, he has bicuspid aortic valve, hypoplastic 
eyes (small eyes), cleft palette, he is deaf, has no suck and was 
incoorinadted in the suck, swallow, breathe with a liquid.  They had a G-tube 
put in so that they could send him home.  He was there for a month.  They 
gave him 3-6 months to live and sent him home.  
       His health has been great.  No problems since we got home.  Had he 
back to the hospital for a Swallow study to see if he was capable of feeding 
with a bottle, they gave us the okay to start with 10cc of formula thickened 
with rice cereal, just a little so it is not pouring down his throat.   he 
had a stomach virus that went through the whole family but came through okay. 
 He weighs 9 lbs 15 ozs and it 23 inches tall.  
       We have hospice care 5 days a week for 4 hours a day.  He receives 
Physical, occupational and speech Therapy once a week 45 min each through 
early intervention.  I have apply but was denied Medicaid and SSI and am now 
trying for Care At Home.  
       We live in New York, 25 min north of Manhattan, so we are near to the 
city if any one knows of any doctors for anything that may help us in this 
area.
       I think I covered it all.  Lol so much for one small baby.  He will be 
6 months on Saturday, think we are going to have a party for him.


Mikki (Michelle) wife of John (8 Years)
Mom of Michael (7), Caitlin (5), Siobhan (2) and
Brendan T-13 (5 months)


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

Other related posts: