Post by Cbean on Aug 18, 2006 7:06:39 GMT -5
Just had to post this update as in one year we have come full circle!
Emily and I had the pleasure of visiting CHOP (Children's Hospital of Philadelphia) on Tueday for a follow up EEG and appointment with her neurologist. I have to remember to post a pic of her with her brain all hooked up!!! Oh how she complained! Amazing how a low-toned baby who still can't get up on all 4's can find incredible strength to get her arm out of a papoose!!!
So as I updated her doctor on her progress I started out thinking Emily really wasn't doing anything remarkable. Yet as I was listing what she was doing, I realized how long the list is growing and was delighted to see how impressed her doctor was with each thing I mentioned.
So as her neurologist is a fellow, she always brings in one of the doctors to follow up and conclude our appointments. Who does she bring in, but the doctor who admitted her into the hospital last year. It was so great to see the two of them witness Emily and her abilties, especially her social abilities! She was beaming at them and reaching out for them. So cute!!! So phenomenal.
If anyone ever hears about a family who is dealing with Infantile Spasms, please keep me in mind for support or info. I was so fortunate to have had two mom's that I was able to talk to and having someone to offer support and info to me during that time was priceless. There is such a small percentage of babies who come down with this and an even smaller percentage who have DS, so for me to have had two mom's as support was unheard of.
So we close the chapter on IS for good and now just deal with a baby with DS. However, that baby is on her way to being a toddler and is developing the attitude of one while she still seems like a 9 month old at heart. Give me strength!!! LOL! But it's all good.
Emily and I had the pleasure of visiting CHOP (Children's Hospital of Philadelphia) on Tueday for a follow up EEG and appointment with her neurologist. I have to remember to post a pic of her with her brain all hooked up!!! Oh how she complained! Amazing how a low-toned baby who still can't get up on all 4's can find incredible strength to get her arm out of a papoose!!!
So as I updated her doctor on her progress I started out thinking Emily really wasn't doing anything remarkable. Yet as I was listing what she was doing, I realized how long the list is growing and was delighted to see how impressed her doctor was with each thing I mentioned.
So as her neurologist is a fellow, she always brings in one of the doctors to follow up and conclude our appointments. Who does she bring in, but the doctor who admitted her into the hospital last year. It was so great to see the two of them witness Emily and her abilties, especially her social abilities! She was beaming at them and reaching out for them. So cute!!! So phenomenal.
If anyone ever hears about a family who is dealing with Infantile Spasms, please keep me in mind for support or info. I was so fortunate to have had two mom's that I was able to talk to and having someone to offer support and info to me during that time was priceless. There is such a small percentage of babies who come down with this and an even smaller percentage who have DS, so for me to have had two mom's as support was unheard of.
So we close the chapter on IS for good and now just deal with a baby with DS. However, that baby is on her way to being a toddler and is developing the attitude of one while she still seems like a 9 month old at heart. Give me strength!!! LOL! But it's all good.
&
Susan, Proud mom of Michael (32), Justin (25) Emily (22ds), and Jordan (20).
