Special Needs

annoyed

i missed our first gtg with our local limb difference group today.  i was really looking forward to meeting people before baby2.0 comes.  DH doesn't seem to care about missing it even though i brought it up numerous times and RSVP'd to it...and that disappoints me.  :(

Re: annoyed

  • I'm sorry. It's difficult at best to see our DH's not reach the same level of acceptance. :(

    My 28 month old DD has limb difference and I have never heard of these GTGs. Can I ask how you found out about them? And being extra nosy, what is the cause of your son's limb difference? My DD has hemihypertrophy (left side is slightly smaller).

  • imageautumngirl:

    I'm sorry. It's difficult at best to see our DH's not reach the same level of acceptance. :(

    My 28 month old DD has limb difference and I have never heard of these GTGs. Can I ask how you found out about them? And being extra nosy, what is the cause of your son's limb difference? My DD has hemihypertrophy (left side is slightly smaller).

    they called it a left limb reduction, he has an elbow and normal upper arm, but his forearm is 1/3 of the normal length and there is no hand or fingers.  they aren't sure but they think the cause was a spontaneous blood clot early on in development.  he'll have blood tests after he's born. 

    i think we found our group through googling; it really seems to depend on your local area.

    https://www.aboutonehandtyping.com/childrenlimbsupportgroups.html

    https://www.superhands.us/pages/links.html

     https://www.child-amputee.net/linksofinterest.htm

    the biggest PITA has been with the varied terminology for that kind of defect, so it makes it hard to find groups.  try searching for "amputee" in addition to "limb difference" because a lot of the groups are very inclusive with regard to age and how/when the defect occured.

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