finally a diagnoses

[aydenava]

Well we finally have a definate diagnoses severe SED congenita.Severe meaning hes going to be extremly small,maybe 3 foot.Im not so much upset about his hieght just the fact that hell always be to small for everything,reaching faucet handels,toilet,cabinets,driving a car,riding a bike(even the smallest is way to big)holding his baby sister(shes the same size,i actually just put aydens jammies on her).The worst part is his brain stem is sitting lower that ours & his c-spine is weaker,i dont have much info about this yet for we still need to see nero.Cinci did the MRI of his brain & our hospital never did one,so we dont know if it has always been this way,or if it is changing.The problem is not with his bones,SED affects the cartiladge,so Dr.Cotton is reachercing to see if someone with a cartiladge disorder has ever had the LTP,so i hope to God he is still a canidate. On a happier note, Ayden is behind me right now jumping off the bottom step of his stool & he just asked if he can jump off the top step & i told him no,he said Evan does(his cousin)& i said well he taller so its safer,but the bottom is still fun,2 min. later he said," momma look im tall "he was standing on his tippy toes,its starting already,hes to darn cute!So i let him jump from the top into my arms.

[Alethia]

Hi Angie,

I'm going to PM you, but I'm SOOOOO glad that you've finally got a diagnosis!!!

Love,

Kate
XXXX

[Ainsley's Mom]

I'm glad you got a diagnosis. I'd always rather know the truth. I hope he'll still be a candidate for an LTP. That story is so cute! Good for you for letting him jump off the top step! Although he sounds a little sneaky, I think you'd better keep an eye out or he'll be up on that top step when you're not looking! ;)

[LKN]

I'm glad you've got a diagnosis, and I'm glad to hear he's keeping you on your toes!:)

[lexismom]

I have an 11 year-old daughter who is a patient of Dr. Rutter's in Cincinnati. My daughter has Campomelic Dysplasia which affects her cartilage. She has had 2 LTP's since July of 07. The last one was in November of 2007. The first one failed due to an infection and the second one is still hanging in there but barely. They have never told us that her cartilage is the culprit but that's what my husband and I are wondering. Mention Lexi and Dr. Rutter to Dr. Cotton and if he wants our permission on anything have Dr. Rutter or Amy his nurse practioner contact us. I would be happy to help if I can in any way.

Angie (Mom to Lexi 11 1/2 with Campomelic Dysplasia; a rare type of dwarfism)

[alizesmom]

Having a diagnosis feels good. I'm glad you got one and good for Dr Cotton making a point of researching before jumping in with the LTP. I hope that he can still go ahead. I enjoyed hearing about Ayden's adventurous side. Karen

[jenell3@insightbb.com]

Good luck, Dr. Cotton and his team are wonderful, they always look at EVERYTHING before jumping right in, we are a true confession of them and their team, Chance was 100% occluded one of the worst stenosis they said they had seen 2 ltp's and 6 months with a ttube later they are still not throwing in the towel! GOOD LUCK, your guy sounds like mine not afraid to try anything someone else is doing they dont see themselves as having "issues" my guy now 6 1/2 thinks he can do anything they can be the ones that change the minds of everyone out there so let him jump just be sure to buy him some knee pads and maybe a helmet ha, ha, GOOD LUCK!

[JWorthington]

I'm glad you got a diagnosis, even though it won't change the way you treat Ayden. Sounds like he's keeping you on your toes!

Juliex:)

[faywrayy]

Ayden sounds like he's perfectly adorable and that will never change. I think it's probably best to have the diagnosis and then move forward.

Love that story!

[My little figther]

I am glad you finally have a diagnosis I am like you I rather know the truth so I can have an idea of what to expect. He seems to be a handful an a lot of fun
Michelle