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Friday, May 8, 2009

Poor Little G-tube Site

Our future little blogger!
This was actually taken at the Ronald McDonald House last fall -- I just love it tho!

Sooooo......we had to cancel Amelia's ear tube and strabismus surgery which was supposed to take place yesterday because our ENT felt uncomfortable at the the surgery clinic where they were going to do the procedures. It seems that last year they shut down their pediatric facility there and are no longer equipped for a pediatric emergency there. We are totally okay with this...but it's still gotta get done, so we're waiting to see what happens.

In the meantime, we took Amelia to the surgeon's office, Dr. Ginsburg out of NYU on Tuesday because we've been having such a headache with her g-tube site. I've been cauterizing it every other night and using steroid cream on it (shrinks the skin on the site) all for naught.

Dr. Ginsburg looked at her sore little belly and said:

"Yeah, you've done everything you could do. It's not your fault and we don't know why this happens, but we're gonna have to close up her existing site and make a new one".

Silence.

Horrified looks on our faces -- as if we just got kicked in the gut.

ME: "Isn't there ANYTHING else we can do?"

DR. G: "Nope"

ME: "But I was just bringing her in so you could fix it. Here. Not surgery!"

DR. G: "Sorry. You can go home and discuss it and get back to me."

ME: "Could we do the tubes and strabismus at the same time?"

And that my friends is our new little headache. And we are actually trying to see if there is anyway on God's green earth that we can do all the stuff at the same time. I'd hate to have to put her under twice in such a short span of time. Problem is her other 2 docs don't work out of NYU so we're trying to figure that out.

On a happy note, earlier that same day we attended a lovely luncheon that is given annually by UCP, NYC. The "Women Who Cares" luncheon is held every year at Cipriani's on 42nd Street. What an event. So many wonderful people there who have done so much for the community as well as so many who have personally touched our lives and helped us through some of our darkest hours in learning how to cope with Amelia's needs. Nestor was honored to present their new website www.mychildwithoutlimits.org which is a resource for parents and families dealing with the day to day needs and services of their special needs child. I always sit at the event and just cry with each person honored and video shown of our kids. Always the most striking is when they show the "then" and "now" pictures -- which shows the stark contrast between how our kids used to be treated -- filthy institutions with NO stimulation, food, clothing, or any human rights to speak of and today, with wonderful programs and people who take our children and their rights very seriously.

And we are winding down our week in Baltimore at my parent's house. It's my little cousin's Bat Mitzvah tomorrow, so we came down here yesterday to attend the weekend of events. How fun! I'm very excited that I will be wearing the very awesome Nicole Miller dress from Nestor's and my rehearsal dinner from when we got married. Never thought I'd fit into that again! Fits like a glove. YAY! So I'm preparing for a little dancing, drinking and merriment.

On a last note, I was very sad to attend the funeral for my cousin Alan's Father-in-law, Leonard Ponfield today. He had been very sick. It broke my heart to see Alan, his wife, Jodi and their two children, Jamie and Brian and all their Aunts/Sisters/Mothers/Fathers/Uncles/Cousins so bereaved. I just hope they felt all the love that everyone at the funeral was sending them to help them through this devastating time.

2 comments:

Ellen said...

Hi. I am so sorry to hear about the g-tube, that sounds awful.
And sorry to hear about the funeral, too.

We are about to take off for a week's vacation, but I'd like to talk with you a bit more about the CP group--email me and I'll respond when I'm home? We're at LoveThatMax@gmail.com

Take care!

Ellen

Jodi Cutler Del Dottore said...

Oh Debbbbbbbbbiiiiiiieeeee,
I'd like an update please.
Jodi