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!