Re: new here/Bonnie

[Guest guest]

Bonnie ~ about the laryngomalacia ~ none of us have even been

diagnosed with it...and to my knowledge none of us have stridor.

Interesting though about your note because a cousin lost a baby due

to " SIDS " at 5 mos.

Nice to know the memory loss is something with EDS ~ its a struggle

for the kids and I at times too.

I found it interesting your umbilical hernia was repaird in 02! ouch!

Can I ask why? Austin has a " decent " sized one. Had groin hernias

that of course were fixed, but no one's ever even suggested it being

repaired. The ped. thought it would keep getting smaller the more

his muscles developed. Its smaller than when he was born, but I

think its still about the size of the end of my pinky finger.

Austin also has orthodics in his shoes due to flat feet, but also

because his ankles " fall in " and they are helping his alignment.

I think the last question I have for now is one the skin tearing

easily, not healing well, etc... any ideas on this? what you all do

to get things to heal up? Austin's cranio scars run zig zag from ear

to ear... he has a website but post-op pics are really gross and

hate to scare anyone off, lol. Anyhow, his last surgery to expand

his skull was Mar 03. It took FOREVER to heal. The nsg. thought

because it was an issue in expanding it so large that the skin was

really stretched to prevent another expansion, however, it took over

2-3mos. for one area of the incision to close and heal. We were on

topical and oral antibiotics, etc. No one could figure it out.

(imagine that). Still to this day, a yr. later ~ it very easily

looks like a " sore " about the size of the end of a pencil eraser...

then will EVENTUALLY dry up and a scab fall off. But happens over

and over. And ideas on how to keep things healed or ways to heal the

healing during surgery times?

Whoops one more question (for now) ~ whats the link on EDS to

hearing (you mentioned speech and hearing on your survey relating to

EDS)? I've always had lots of hearing issues and the last few months

I'm really struggling to hear and find myself asking people to repeat

alot. In fact, this is something I was going to talk with my doc

about this summer at my yearly checkup and see if I could get a

hearing test.

Thanks for the CEDA link to the website. I finally feel like

I'm " home " and there are others who understand.

hugs~

Kaci

>June 2002 I had an umbilical hernia repaired (ouch ouch ouch), flat

feet for which I now have orthotics, soft skin that tears/bruises

easily, and a lot others I can't remember now unless I look at a

list

>