Hello, I am the parent coordinator for Florida. I was put in contact with a family here in Florida who has a new baby that is SED. The mother and father are...
I would be glad to discuss general SED issues, etc, (when she is ready), but I have no trach experience. Feel free to pass along my email (eeladnil@...) ...
... and ... is ... Please contact me @ mariasavon2004@.... My son had a trach from birth till about 10 years old. he still has his stoms open but is ...
There is a letter for new parents in the Files section that I wrote awhile back~ my daughter is now 18 and has Kniest, as you know, SED is similar to Kniest. ...
I am a mother to one year old Tanner (achon). We have taken him to Shriner's in Portland a couple of times now and have been happy with his care. We are...
Hi Deanna, My little boy is 2 years old (he has Ellis-van Creveld syndrome)and has had a trach, ventilator and oxygen since he was 4 months. We've still...
My daughter, Clarissah, is going to be 12 this month. She knows what she has and it is not nearly as serious as many of you have all stated your children are...
Hi Vita, I have e-mailed the RTS support group and I guess this type of thing is common in our kids. They told me most of them can be out-grown or the catheter...
Hi all - it is Amy from PA and just a reminder - I am still collecting pictures for Dr Scott's retirement slide show - It is shaping up nicely and the song ...
Could someone tell me how to get this on POLP1? is that an option? Sorry - I am clueless sometimes :) ... __________________________________________________ Do...
Hi all, Just wanted to let you all know that Kiki goes into surgery today. She's having osteotomies done on both her lower legs because they've grown in an...
Tricia, What type of dwarfism does your daughter have? My little girl, Emma has achondroplasia. She is almost 5 years old. If you respond to this email, please...
Does anyone know if there are awareness bracelets for achondroplasia or short stature or dwarfism? Some family members were asking and I wasn't sure? thanks ...
Amy, I don't believe there are any awareness bracelets for dwarfism. I know that there are for downs & other things but not dwarfism. Maybe we should do...
i was looking a while ago for this sort of thing but had no luck so actually printed off some 'business cards' n laminated them these i then handed to the...
I'm assuming you mean a medical alert bracelet and not something like the pink breast cancer bracelet. IF (and only if) an LP (with any type of dwarfism) has...
hello all, i havent been in here in a long while. well the doctors think that our eden has Metaphyseal Chondrodysplasia he says it will take years to make...
Hello everyone. I am going crazy trying to figure out what to do for Emma's 5th birthday party. She will be in school by then & wants to invite her school...
Hi Nick, A pinata that is broken open with pull strings (instead of hit with a bat) works well. It's easy to make sure each child gets a turn. Also a version...
Hi Emma, You could do beanbag toss into hula hoops, hula hoop contest, water balloon toss, wheelbarrel races. We have done all of these successfully with...
Hello everyone. My Daughter will be giving birth to to my first Grandchild,a boy. My Daughter was a high risk pregnancy. She had problems from the onset and...
We did the typical princess birthday when my daughter turned 5. I baked a cake in a bowl and stuck a barbie body in the middle for a princess cake. The kids...
I am saddened and stunned. There are few words to describe how I feel. Angel was a friend and it is hard to believe we were laughing and talking just a few...
That would be a great idea, and a pretty easy fundrasier for chapters. We get catalogs that are targeted to educators and they often have bracelets that can be...
Having problems with message search?
Fill out this form to ensure your group is one of the first to be migrated to the new message search system.
