Brooklyn McGough's story

[RI Mom]

Hi there,

I also missed your post in November....probably because I wasn't even on this forum yet. Like you, I devoured information about my son's CHD for a while until it became almost an obsession. I believe that I am teetering right now too...LOL!! My child was 4 when he had both his mitral valve and pulmonary valves replaced. I was never given any information that led me to believe that mitral replacement was more risky in a small child. My son did well and now has a 23 mm. St. Jude's mitral which is a small adult size. He was 4 years old and about 37 lbs. at the time of implantation. His pulmonary was replaced by a homograft (from a human cadaver) and it has not done well. Kids sometimes have extreme immune responses to these (it doesn't happen often but the younger a child...the more possibilities it will). He will be having that replaced this summer...YIKES!!

It is sure not easy being a "heart parent" but it helps to have the support of friends and a really good medical team.

I wish you well

 

[swim mom]

She doesn't need a 504 if she has an IEP. I asked my brother (a special ed teacher) what his advice was and he said it was a hard call. You don't want her overly frustrated but yet many kids who have problems in kindergarten are normal by our standards a few years ago but now that so much more is expected of kindergarten they have problems.

 

[MissMelis]

Hi Alison

Just wanted to say welcome and to voice my support and encouragement. There is a LOT of great advice given on this forum, I am glad you've found us.
I am thinking nothing but positive thoughts for you, your husband and your beautiful little girl.

I can't speak to your experiences, but what Janet said makes a lot of sense to me...wanting to wait for the worst to happen is pretty scary. Sure can't hurt to get another opinion, and it might help!

I wish you the best!

Melissa

 

[redwingsfan]

I justwanted to say welcome. I can't even begin to imagine what youa and your husband are going through but be assured of the thoughts and prayers of me and my family.

I will check often to see how things are going. Take care.