Saturday, October 18, 2008

CALIFORNIA UPDATE PLEASE READ!!

Hello to everyone and a special hello to our ONE FOLLOWER OF THE Blog!!
WE ARE BACK FROM THE LET THEM HEAR FOUNDATION'S Microtia Conference 2008

We got better news than we ever KNEW was physically possible. Here goes! I will try to NOT make it confusing if that is possible. The Ears:
Left side Grade 1 or the more normal looking ear..
Right side Grade 3 the little peanut:

There is a grading system used to determine whether one is a good candidate for the ear canal reconstructive surgery. (Atresia Surgery) It goes like this:1-10 10 being best (but nobody ever gets scored a 10)
<6 class="blsp-spelling-error" id="SPELLING_ERROR_1">candidate
The Grade 1 side was scored a 9!
The Grade 3 side was scored an 8!
The only thing better than that would be a 9 and a 9. They can't even remember when they had a 9 and a 9. HE IS one of the best candidate they have seen in years!

In addition: on the left/Grade 1 side....he HAS AN EAR CANAL!! He also has the opening in his skull.....no bone to drill through on that side and the makings of the ear canal, possibly an eardrum past the blockage which is either tissue or bony fragments but in any event they won't know what it is until they get in there. There will be little skin grafting needed on that side. The grafting needed should be to make the eardrum if it is not there.

What this all means: After the 2 Atresia surgeries and they open the one ear canal and make the other, he is expected to hear within normal range (0-30db) WITHOUT ANY HEARING AIDS.

Please!! Are you KIDDING ME!!!!! All I can say is, thank you God, thy will be done. Thy will be done.

So! Here's the anticipated schedule.
August 10, 2009 Left side Atresia Surgery
November 23, 2009 Right side Atresia Surgery
February 22, 2010 Right side Microtia-Medpor Reconstruction
JAKEY COMES HOME WITH 2 EARS!!!

August 16, 2010 Right side Medpor stage 2 AND left side otoplasty.
The plan is to make the earlobe on the right side, using some tissue and cartilage from the left ear, and at the same time, giving that left ear a little snip-snip tuck-tuck to make it stand up nice to hold glasses without bending down.

So! We are still in disbelief. Any time I talk about it, my cheeks tingle. What does that mean? Am I gonna have a breakdown or something?!?!? After ALL OF THIS that we have been through, the GOOD news is gonna BREAK ME?! Have no fear. I've got my super-cape on!

Oh, and to the parents and the children there in California at the conference with us, unbelievable. We are all in it together and for the first time ever, I didn't feel so alone. Talking with you all gave me such strength and hope.

What else we came home with: The most awesome of peace and calm I have felt in over two years. It's gonna be ok. Paul was right. AGAIN. It's gonna be ok.

To the "Fam" and the "Pals" thank you all for your prayers, good thoughts, crossed fingers, and toes, and some of ya, even eyes!
We love each and every one of you.
It's a tad busy, but life IS good.

5 comments:

demlad919 said...

CONGRATS!! From the Demeter Family! I got teary eyed when I read that and the birthday blog! So....when are you going to write a book??? I'll help you with the title...I'm also seeing a Lifetime Movie in the works! LOL!

Lynn Marie Whitenight said...

Love to the Dems, the extended family. I am gonna blog more frequently, really, I am... In my spare time. No book for me, I have no writing talent, for sure. Just what pops into the old jelly-mass between the ears. You know me, I write exactly as I speak. Scary but true.

big giants fan said...

HiLynn, We read your story from cali. we are so happy everything went great. love Bill,Tanya and Brianna Demeter

The Wallace House and Old Dutch Parsonage Association said...

This is a time of great joy and hope for your whole family. May your way ahead be smooth and sure.
All our good wishes and prayers for Jake.
Friends in Somerville.

Anonymous said...

Lynn
My name is Dave Brown i am a front end manager for stop&shop in Hillsbourough nj it touched my heart to read your story and to hear jake got good news. Im writing to let you know or ask you if i could start raising money for little jake
Last year me and my store raised over $1,500.00 for Ryan Diaz a 6 year old cancer survivor we once again would love to raise money for a township child in need
We raise the money buy having hot dog and bake sales,in store raffles,face painting,and all sorts of fun
If you could please give me a call at STOP&SHOP 908-359-7274 so we could discuss more it would be appreciated look foward to hopefully helping you and jake and your family
Thank you
DAVE BROWN