Friday, February 13, 2009

It's Official...

My little Carter does in deed have Hirschsprung's Disease. It's an EXTREMELY rare disease to have. But the fact that we now have 2 children with it is almost unheard of. Not much research has been done with this disease. I'm hoping that we can take part in any research to find out what causes it. It can be a genetic problem but there isn't any family history of HD. So what's next? He'll have to have a colostomy for about 6 months. The Dr.s have to give his colon a chance to shrink back down to the proper size and they have to give his muscles in his colon a chance to become strong again. So his colostomy will be placed next Friday. We'll spend some time in the hospital (3-5 days) and then start our new way of life for the next few months.

I am really happy that he'll finally start feeling better! But I am in shock too!

I just wanted to thank all of those who have already showed their love and support. I love you so much and it means so much to me. I truly believe that in times like these you find out who truly loves and cares about you. I hope I can return the love and support one day! I love you.

8 comments:

Shafferprincess said...

Wow, Tami! I just read online about a colostomy - I've never heard of that before. That's crazy that both of your boys have HD. I know we don't live close, but if there is anything I can do to help, please let me know. I'd be happy to. Good luck!

Heidi said...

you already return the love and support a 100 fold times ten.. You are adorable.. And I am glad there will be a light at the end of the tunnel for Carter.. YOu are amazing I adore you & look up to you so much.. Take Care

Lauralee said...

Will ne be at Primary Childrens? My niece is a nurse, I will tell her to watch for you, she is GREAT. You'll love her, if you are going there. I am so glad that things are looking better. We miss seeing you. Good Luck with this coming week.

jwill said...

I have a friend whose son has HD. I talked to her often about his treatment and progression. I hope this long road will lead to comfort and health for your little guy.

Shafferprincess said...

Just wanted to check in and see how things are going, Tami, and to let you know that we're still thinking about you guys and praying for you, too. Good luck!

Jen said...

Our thoughts and prayers will be with you and your family. You are a trooper and so is Carter.

Kel said...

Hello Tami! Nice to "meet" you, and I'm glad you found our family blog. You are always welcome to read it.

My family will soon be participating in a Hirschsprung study by Johns Hopkins University. If you're intersted, there is information here: http://www.hopkinsmedicine.org/geneticmedicine/CR/Hirschsprung/HomeHirschsprung.html

I found out about the study from my new friend in Israel whose infant son had a total colon HD baby like ours. He is the only other infant on earth that I have found is long-segment like our little one. I haven't found any other long-segment baby girls.

The most interesting part on that site, I think, is the section on inheritence, especially the percent risk to relatives. Like you, we were told initially that the chance for us having a second child with HD was minimal to zero. However, since we have a girl with LSHD, our chances increase substantially. I hope to have more kids someday, so hopefully we'll be more prepared if it does happen.

I'm sorry you're dealing with this again. Hope we can support each other through it all.

Kel said...

Hmmm... that link didn't come out very well. I'll email it to you.

Post a Comment