It's becoming almost too normal

"Mom, It hurts..all over"...the grey look in face, the glassy eyes..Is this ever going to go away??? We spent yet another night in the Emergency room last night with Kaydee, my 11 year old. Third time this month and still no closer to the mystery that has taken over her body.

Now's a good time to explain alittle about the "caregiver" part of me. I have two wonderful daughters 8 and 11. The two of them and myself received an inheritance a while back. Unfortunately its the not the type of inheritance that your long lost aunt gives you (well I guess in my case she did..but whatever) in hefty check. Our inheritance is of the gene variety. We have a disease called Ehlers Danlos Syndrome and at this point I would really like to give it back.

Ehlers Danlos (EDS) is a connective tissue disorder. It has wreaked havoc on my daughters joints, their GI trac, their lungs, their veins, ..you name the part of the body and somewhere along the line my daughters have seen the syndrome or its related issues attack it. EDS is a collegen deficiency...the glue in our bodies don't work properly. When the doctor first used this description, my youngest Maylynn announced that she could fix us..she had the answer. She reached in her backpack and pulled out Elmers. (too bad it couldn't be that easy).

I'm sure you will hear me harp about EDS on many occasion because in a way its just as much a part of this family as my kids are.

Anyway back to Kaydee. Kaydee has gone through one of the worst years medically I can remember. She missed oodles of school, was homebound due to 3 broken bones (yes three..yet another story later), and spends a good deal of her life in pain. Last night was no exception...well with one exception. They can't figure out what is triggering this!!!

A month ago, she came down with streptopneumococal..aka strep pneumonia. Amoxcyclin will fix it says the pediatrician. Then she starts with abdominal pain..must be due to the strep..says the ped. The pain gets worse..go to the ER..Urinary trac infection says the doc. New Antibiotic says the doc. Pain still worse...aww resistant strain of strep..another new antibiotic says the ped. Exhausted from the Pain..go to Childrens Hospital of Philadelphia ER (3 hours away)..nothing on the tests..go home says CHOP doc. Oh wait we forgot to tell you..her bowel is impacted..new medicine..thats whats causing the pain ..says CHOP. Pain is now even worse and now has taken over he whole body ..ears, throat, stomach..go to the ER says the Ped. Awww must be mono says the ER doc, must be something says the ER doc..labs say NOTHING!!!

So..whats the bottom line? My daughter is in pain..shes sick and no one can fix it. I can deal with a lot of things..Throw me anything..I'm your gal. Watching my child cry in pain for hours however brings me down.