Cure NF for Kaitlyn!

Cure NF for Kaitlyn!
Help Kaitlyn fight Neurofibromatosis

Wednesday, March 4, 2015

Update on Kaitlyn's head.

I have a pray request for Kaitlyn ....The day after Krop for Kaitlyn last year we noticed a "mushy" area on the back of her head. We had her at the ER Labonhuer then doctor visits and mri etc. It is a cluster of tumors made of skin cells between her skull and her scalp. We were told to just watch for changes and go back in 3 months. Well, last week she started getting head aches and the tumors are getting firmer. I took Kaitlyn to Semmes Murphy yesterday. There is a good chan...ce they will have to remove the tumor in the back of her head. It is "huge" (quoting the doctor). They are setting us up to meet with a plastic surgeon; hopefully next week. The doctor said that "it is a major undertaking". If the plastic surgeon agrees with these 2 surgeons at Semmes Murphy, they will coordinate a team to take the tumor out. The reconstruction of the back of the skull and skin will be the big issue. I will let you know more as I learn more. Kaitlyn is nervous about her head and knows the tumor may have to come out, however she does not know what all is involved. Until we know for sure what they are going to do, I don't want to scare her with the details.
I sent Kaitlyn's genetic specialist an email about yesterday. This is what she sent back......
Keep me updated but I think they are right , remember the skull felt funny where the tumor is so we do not want that it erodes the bone more. The metal plate to replace the bone is common with babies who has craniosynostosis (sutures stuck together) so they used to do this procedure. I know this is not small deal but at least it I is not inside her brain.
We are just supposed to keep track of headaches and keep doing what we are doing until we talk to the plastic surgeon.
We are pretty scared but know we are in good hands. We are strong believers in prayer and know that the strength we get from them will guide us through this terrifying time.

 

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