Dear Moms of Hemihypertrophy kids,

Saturday, November 16, 2013

I am reading my rather pathetic blog.... I'll start and stop because something comes up. I've started looking at other Mom's of Hemihypertrophy kids who have older children and realize mine is also getting older.

I started facebook groups that divide into our child development blocks. When I first started looking at hemihypertrophy I was overwhelmed and the doctors didn't know what I was talking about. It wasn't until I really started searching and praying that I found the answers. The answers were found in other Mom's and children or adults with this condition. There aren't any books about hemihypertrophy but there are some about wilm's tumor.

My son was different from most in that I noticed the slight difference in my son's sizes but the pediatrician didn't until his 2 year appointment. By then I was thinking I was going crazier than normal. The MRI was scheduled but by then I was into the support groups full swing and they weren't running it the way the other Mom's talked about. I had to search for a hospital that didn't search for my sons veins but gassed him first.

Realizing that my son has moments where he is exhausting to bring to these "simple" screenings. They aren't easy, so kudos to me and Mom's of other kids who have hemihypertrophy. Continue with these screenings that seem so pointless as we continue the journey praying that the wilm's tumor doesn't occur. The why and where for and what the heck that isn't what I heard, why is this doctor changing the protocol...I am frustrated once again. It's been one month and 10 days since his last screening. As I learn about wilms tumors from friends whose children DO NOT HAVE HEMIHYPERTROPHY. I am baffled by all they go through, and don't want to be in their shoes, so I continue to have my sons blood drawn and his kidney's looked at..... um WHY DID THEY CHANGE IT TO SIX MONTHS?? I still don't know but my son is healthy. He might not need surgery on his leg he might just live with a lift in one shoe for his entire life.