Welcome Friends!
Michael J..
Biography
Michael is 3 years old, he was born on May 5th 2007. He was 4 weeks
early and had to stay in the NICU for 21 days. He had to be fed with an NG tube,
because he didnt have the sucking reflex, and had a hard time gaining weight. We
noticed the droopy eye right away but the NICU doctor said it was probably just
swelling and not to worry about it. They told me he had a heart murmur that
needed to be checked when he came home, but didnt seem to worried about it. When
he came home we brought him to the pediatrician who told us something was wrong
because he had 'dysmorphic features', but she didnt know what so she sent us out
of town to see another pediatrician who sent us to a geneticist who suspected
Noonan Syndrome. At that point we just wanted an answer as to what was causing
all of his problems. He had been diagnosed with Congenital heart disease
(PDA,ASD,PS) bylateral astigmatisms, hydronephrosis, failure to thrive,
bylateral ptosis, low muscle tone and physical d
elays. It took about a month for the results to come in confirming Nonnan
Syndrome PTTN1. He was getting PT and ST until he turned 3, and then he started
preschool and gets all of his therapies there. At 1 year old he had a surgery to
bring down his testicles. He has had 2 dental surgeries because children with
N.S. have really thin enamel and that causes alot of problems, during the second
surgery they noticed he bled more than expected so that led to a test for Von
Willebrand Disease, a common bleeding disorder for children with N.S. it came
out positive. He also has short stature and gets growth hormone injections
daily. In September 2010, he was scheduled to have a procedure done where the
insert a catheter into his vein in order to fix the 2 holes and the narrowed
pulminary valve without having to do open heart surgery. After they put him out
they did an echocardiogram and found that the ASD is worse than they thought and
not in the exact spot they had thought, so they
cancled it and scheduled open heart surgery for November 18th 2010. He will
need to have DDAVP to up his von willebrand factors and help control the
bleeding. He will be in the ICU recovering for anywhere between 5 days and 2
weeks. He is such a strong and loving, happy child. He always has a smile on his
face.
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Once there click on the link "database" on the right to view the children and their patterns. Once you find a pattern that you want to stitch and have confirmed it is not already being stitched you may return to the sign up form, fill it in and submit it. If you have any questions about the yahoo group please email Cyberfogie@aol.com, Vicki, for further instructions (yahoo groups email only!) Thanks!
THANK YOU
The quilt is amazing! When Michael opened it and I helped it he said 'oooh nice!'. I read all the names of the ladys who helped make it and he asked me why they did, so I told him it was because he was such a brave boy for having his surgeries and everyone around the world loves him. He smiled and said 'Yeah'. Right away he got a pillow and lay on the floor with his 1 yr old sister and covered up with it, so far no one else is allowed covering up with it unless they are laying with him, so I think he likes it! A few days ago I had to wash it and as soon as I came upstairs from putting it in the washer, he told me it was done and to go check on it. Thank you so much for all of your work (and prayers!) he has never really been attached to anything except his matchbox cars, so this will be great for any future surgeries, he will have a comfort quilt. Again thanks so muchr!
