Hello everyone! I am looking for advice and support. I am a single mom raising one son and I have a daughter who is about to be born with a form of skeletal...
Dear Cathy, My thoughts and prayers are with you and your daughter. I've never been in your situation, so can offer little by way of advice, but I'm always...
Dear Cathy, I've not been in your exact situation, but I have been in situations where I had to make difficult decisions concerning my children's medical care....
I have recently had my baby diagnosed with short stature. It was not recognised at birth as facially he looks "normal". Does anybody know whether the...
hi cathy, my name is jesi. i have a 5 1/2 month old daughter, helena, who has achondroplasia. but before helena, i was pregnant with another daughter,...
Cathy, My heart goes out to you during this difficult and stressful time. I think Jesi made a great suggestion to try and find someone to go with you. The...
Cathy, My son was supposed to have water on the brain and they told me that he wouldn't live more than minutes after birth. I made a decision to keep the...
Cathy, Where do you live? Maybe someone on this list could offer more personal support. My sn kiddos came here after birth as they are all adopted but I can...
I just have to say that I am amazed about what I am reading. Boy, alot of us have been through the wringer, eh ? So many have had a doom and gloom prognosis -...
Cathy, What I went through with my daughter sounds exactly like what you're going through. I would love to talk to you about this. Please e- mail me at home....
Cori, That sounds just like us. We did not set anything up at home or bring a carseat, baby things, or even a camera to the hospital for fear we would jinx ...
hi everyone, after reading what everyone has gone through i am so glad that cathy has so much support. it is a dark time when you feel all alone. i hope you...
Hi, Both are very similar. DNA is Also Based on the same gene mutation although the genetist will be able to tell by the Shape of his head ( large forehead is...
Sixteen years ago, they did an ultrasound that said I was having a healthy baby boy. This was done at 7 months along. Imagine our surprise when Amy was born~...
Cori, the experiences you highlight, and those other parents highlight, of the negative and grossly insensitive manner the so called "Medical Profession" has...
During our fight to get Austin diagnosed...grant it other than the juvenile arthritis and small stature there was nothing else horribly wrong...we went to 3...
Great message, Fred! All families with LP children could use a few "Freds" in their lives to learn about the possibilities of life as an LP. In my opinion,...
Sorry, folks, about the spam message that you saw this a.m. Because this is an open group, anyone can join and, because of Yahoo's "lag time", the moderators...
You know Vita, on the undiagnosed issue, you are so right when you say find an LP who is similar to your child (easier said than done!). When we went to the...
Okay, Vita is going to hate me for this one : ) The dwarfism experts are relatively little help for undianosable children. I have been across this country and...
Hello Cathy, I want to let you know my heart goes out to you and my prayers are with you. My name is Laura and I live in NJ. My husband and I have a 7 year...
Traci, I agree with almost everything you say here, especially about the "guesstimate" part. Henry is, of course, very different -- I swear, some day we're...
Vita, Unfortunately, there are ALOT of undiagnosed kids out there. Some more involved than others. Both Drs. Scott and Gorlin told me about 1/3 of their ...
Hi Cathy Our daughter was diagnosed at 24 wks with a skeletal dysplasia as well as a complex heart defect. We were told that her prognosis was very poor and...
I mentioned hip replacements because while Henry's hips are undeveloped, a new ball (femoral head) and socket might do the trick for him if his pelvis does...
My son, Eli, is undiagnosed. I often feel like I don't belong at LPA. I long to be able to talk to someone who has to make the same decisions about their...
I'd like to clarify a little about the genetic basis of achondroplasia and hypochondroplasia. The gene affected for some cases of hypochondroplasia is the same...
My son Danny is four (five in July) and I am looking for boys here in the Bay Area to play with. We live in Piedmont, but would be willing to drive and/or...
Great answer, Patrick does have a second mutation that is still unidentified but noted in his medical records. I did mean to say same gene, different mutation...
I recently started a new job (quite a promotion...I must say) and It is at a company called Linak. They make the linear modulators that make equiptment move...
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