Welcome Friends!
Alysia W.
Birthdate - November 26, 1999
Main Diagnosis - Crouzon syndrome,Vetriculomegaly,Chiari Malfortion, Mitral Valve prolapse
THEME:Angels
Biography
Hi, my name is Sandy, my daughter daughter is Alysia she has
crouzons. In 1999,we went to the doctors right away after I knew I was
pregnant, had a ultersound done to see how far along I was & the due date . We
found out it was a girl :-) I cried with happy tears after having 2 boys & a
girl, 1 more little girl would fit in just fine. I had a rough time with this
pregnance, High blood pressure, wasn't gaining the weight also put on complete
bed rest, taht was hardest part with a 3 year old at home.. That Nov. doctors
were having me going in for stress test twice a week, plus doctors Appt. & still
on bed rest. Nov. 26, day after Thanksgiving, I was suppose to go in for
another stress test, my blood pressure was to high. The doctors decided that it
was time to take the baby by a c- section. When Alysia was born the doctors
knew something was wrong with her but didn't say nothing to us, Iknew by the way
her eyes were bulgd out . Alysia was 2 weeks early & wei
ghed 5lbs 14ozs 18's long our smallest baby,she looked like a doll. Doctors
came in to talk to us, Alysia was having a hard time breathing & wanted to take
her to Grand Rapids,Spectrum Hospital to the NICU.. I had to stay here in
Cadillac, the nurses were so kind they had taken pictures of Alysia before she
left & gave them to me .. When that monday came 11-29-99, Alysia was being
released ,my heart melt ,I sat there held her & fed her for the first time.
She was my little sweet pea, so small, she looked like a doll .. Doctor came in
into talk to us ,that she had crouzon syndrom , & she will be a normal little
girl, that she is & loving & happy all the time :-) 3 days later we had to take
her back in to the ER she couldn't breath , the doctor on call told us to feed
her she was just hungary , we told him about her condition .. 2 days later, seen
her peds doctor he sent her to Grand Rapids right away , I was tore apart but
knew it was better for her. The next day they put stents in her nose to open
the air way up, she was in there for a full month. She spent her 1st x-mas in
the hospital , my husband & I spent it with her but our other 3 chilren stayed
with relitives. That was the worst x-mas we had ,everyone was apart .. She was
home by New Years Eve after they took the stents out . By Feb. 2000, Alysia was
back in the hospital with a minor cold just couldn't breath. By the end of
Feb. she was back in again , this ti
me she had RSV worse then a cold .. Her Peds doctor took her back down to Grand
Rapids that her contion was not improving , he had done everything he could ,
plus they almost lost her ,she guit breathing. She spent 2 weeks in PICU
with a tube in her nose to help breath & to clear up her RSV NOTHING help .By
now Alysia is 3 months old fighting to breath , finally the doctors decided to
put a Trach on her ,I felt scared of her having one , Ater the surgary we walked
in her room & saw her lying there all peacefull & sleeping ... My heart knew
she would be okay now :-) And that we could handle the Trach , a week later she
was going home after we were trained to care for her Trach. Alysia had
become a very happy baby :-) staying out of the hospitals & eating better. By
Nov.3, she was going down for her 1st part reconstrution head surgery ,that was
going to happen that next morning ,it took them 12 long hours but we all pulled
through . She looked good not to swoll
en & drinking a bottle . Alysia was home in 4 days :-) These little kids have
so much will power to keep them going ..
By 2007 she was diagnosed with a heart murmur and Mitral Valve prolapse of the
heart and then her road didn't and there on Feburary 17th of 2011 she was
diagnosed with having fluid on the brian called Ventriculomegaly and Chiari
Malforation. and so far her mid face operation is on hold, the doctors are
afraid they may lose her on the table if they open her up , she is at a high
risk for the operation to be done..
On May 18th of 2011 at U of M in Ann Arbor MI she went in so they could see how
much fluid pressure she had on her brian..
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"THANK YOU"
Alysia got her quilt today and she loves it
