This is my daughter my heart, Ava Jewel (she is 16
months in this picture). 
Ava Jewel was
born on 1/11/06 at Pennsylvania Hospital where she spent
a month in the NICU due to the fact her weight kept
fluctuating. While she was in the NICU they diagnosed
her with a heart murmur, sacral dimple and she failed
her hearing test twice. She had a reputation with the
nurses as being the feistiest baby since she was always
pulling out her IVs and such. All of her specialist are
at Children's Hospital of Philadelphia and it was her
cardiac doctor who sent her for the fish test and found
out in June of 07 she has William's Syndrome.
Personally for myself finding out has taken some of the
guilt I have had off my shoulders, see, I thought for
the longest time Ava Jewel was so sensitive to touch and
noises and cried so much cause I wasn't able to hold her
the day she came into the world and then I couldn't see
her for a week cause I was in the intensive care unit.
When Ava Jewel was home I use to carry her in a baby
sling, I did skin to skin with her, baby massages (still
do and come to think of it I could sure use one)! It
got to the point I remember praying that she would just
be a happy baby. By September I was pretty sleep
deprived so Ava Jewel and I moved to North Wilwood with
my parents who have been a huge help. Ava Jewel is
doing much better now, on occasions she wakes up crying,
she is still pretty hard to soothe and sometimes if you
laugh to loud or sneeze it sets her off but like I said
it is getting less frequent. I love her gummie smile
that she gives us which you might now as the WS smile.
As far as her medical problems she sees the feeding team
due to her slow weight gain she's only 15.9 lbs. She
has had tubes put in both ears and sees ENT, GI and
Cardiac every 6 weeks. She is enrolled with early
intervention and has OT, Speech and will be getting PT.
Ava Jewel loves music, being the center of attention and
she likes shopping (thanks grandma)!
Ava Jewel was
born on 1/11/06 at Pennsylvania Hospital where she spent
a month in the NICU due to the fact her weight kept
fluctuating. While she was in the NICU they diagnosed
her with a heart murmur, sacral dimple and she failed
her hearing test twice. She had a reputation with the
nurses as being the feistiest baby since she was always
pulling out her IVs and such. All of her specialist are
at Children's Hospital of Philadelphia and it was her
cardiac doctor who sent her for the fish test and found
out in June of 07 she has William's Syndrome.
Personally for myself finding out has taken some of the
guilt I have had off my shoulders, see, I thought for
the longest time Ava Jewel was so sensitive to touch and
noises and cried so much cause I wasn't able to hold her
the day she came into the world and then I couldn't see
her for a week cause I was in the intensive care unit.
When Ava Jewel was home I use to carry her in a baby
sling, I did skin to skin with her, baby massages (still
do and come to think of it I could sure use one)! It
got to the point I remember praying that she would just
be a happy baby. By September I was pretty sleep
deprived so Ava Jewel and I moved to North Wilwood with
my parents who have been a huge help. Ava Jewel is
doing much better now, on occasions she wakes up crying,
she is still pretty hard to soothe and sometimes if you
laugh to loud or sneeze it sets her off but like I said
it is getting less frequent. I love her gummie smile
that she gives us which you might now as the WS smile.
As far as her medical problems she sees the feeding team
due to her slow weight gain she's only 15.9 lbs. She
has had tubes put in both ears and sees ENT, GI and
Cardiac every 6 weeks. She is enrolled with early
intervention and has OT, Speech and will be getting PT.
Ava Jewel loves music, being the center of attention and
she likes shopping (thanks grandma)!I am planning on going to the up-coming WS convention and would love to hear from anyone who has attended before that could tell me a bit what they are like or what to expect.
Anna single mother who thank God has great support from
her parents!
