I recently found out that my little guy has a condition called hemihypertrophy. There isn't a lot of information about this out there. I have found a good website though. Right now, he seems to be doing great and I am hopeful that everything will continue to be great. We are scheduled to get MRI's done still. There is a lot I don't know. Besides getting an ultrasound every three months to check for tumors on his kidneys, and getting his shoe modified to help him not be uneven, I don't really know what else to do or even what to ask? If you have any suggestions or know anything that would be helpful, let me know. For now, we are just laughing it up watching him. He is a crazy social little guy.
Hello world!
5 weeks ago
4 comments:
Rachel,
News like that is always hard to handle. I just looked at the link to the Hemihypertrophy website. There's good information there. If you knew your child was going to have a physical condition, and you got to choose, this one sounds like an okay pick. The website makes it sound like it will just be normal to him, but won't impede him from doing things he wants. He seems to have such an outgoing personality already. I doubt it will slow him down at all.
You can join the yahoo group in that website. we have very many discussions that are very helpful.
christine
My daughter has hemihypertrophy, too. We live near Austin and have great doctors at Dell Children's. She will be a year old on February 7 and we have an appointment that month for her to get fitted for a shoe lift. We have an amazing friend with the same condition (same leg and everything) and she led a very active childhood. Now she is going to Medical school in Houston. I just wanted to encourage you and let you know that there are other families going through what you are going through. We found out this summer and although Kate was very happy and carefree it was still difficult news for us to hear at the time.
Rachel,
Thanks for your comment on my blog in January. We go tomorrow to get Kate x-rayed/fitted for a shoe lift.
What company do you order his from?
We were worried this last month because her APF levels went up some, but after this last week's test they are much lower.
--Jennifer
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