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more questions than answers

Friday, March 7, 2008

Sorry it's taken me so long to post an update. It's been a little crazy around here lately.

I picked the wrong time to go back to work. We're in the middle of our biggest project of the year and since our old supervisor is gone, it is up to my co-worker and myself to pick up the pieces.
It's not going too well.
So by the time I get home all I want to do is crawl into bed.
Exhaustion doesn't make for a very good blogger...
or a very good Mommy.
Back to Maddie's appointment.
We met with Dr. Culler, who was very nice, seemed very knowledgable, but unfortunately is not my favorite person now.
He told us that just because Maddie has bilateral microtia, does not mean she is automatically a candidate for reconstruction.
Evidentally there is a facial nerve that runs through the area where the ears are. If the nerve is in the wrong place, she would end up with permanent facial paralysis if they did the reconstruction and opened up the ear canal.
So in other words...she may never be able to have her ears fixed and will have to rely on a hearing aid for the rest of her life.
Sigh.
Honestly, it's not the end of the world, but it is a huge disappointment.
We had hoped Maddie would be able to have at least part of her hearing restored...after all, everything inside is working perfectly...the sound just can't get inside.
We won't know for sure for another couple of weeks what the final outcome will be.
Maddie will have a CAT scan done on the 18th to take a look at where that nerve is.
If it's not in the way we're back to having the surgery in the next couple of years. If it's in the way, then we'll have to look at other options.
If that wasn't enough, we also discovered the hearing aid they are recommending for Maddie is four times more expensive than we thought it would be ($4400).
And insurance still isn't covering it.
At least not without a fight.
I have no idea where that money is going to come from.
So you can imagine the emotional roller coaster we've been on in the last few days. Going from hope to despair.
Yes, I know, it's not the end.
There's still a chance.
The results on the 18th might be good...but honestly we're not holding out a lot of hope right now. The doctor wasn't too optimistic. Evidentally since what there are of her ears are further forward than the normal, there's a pretty good chance the nerve is right there as well.
To cope I keep trying to look at the bright side.
Maddie is home.
She is perfect in our sight and in the sight of the Lord.
She has brightened our world just by being in it.
She is growing, learning, loving and living.
Even if she doesn't have the surgery, she is adding so much more to our lives than we could even ask for.
It's HER we want this for.
Think how much brighter HER world would be if she could just have the surgery.
Unfortunately, the light on that side is really dim.

13 salty messages:

Auntie G March 8, 2008 at 4:20 PM  

You have such a great attitude!! I am so glad Maddie is in your family. You are all blessed. I will be praying that there will be good news in the CT scan.
Gail

adoptedthree March 8, 2008 at 4:32 PM  

Tami
It took me six months to feel back in the real world. I feel for you with the project. Are there any programs that help in the purchase of a hearing aid, when it is a birth handicap? It seems ridiculous a hearing aid is not covered. Insurance is such a joke, when they cant even help a little girl!

Rachael March 8, 2008 at 4:50 PM  

Wow. I hope you get some good news.

What about a fundraiser of some sort to raise some of the hearing aid money? A raffle?

Nataliya March 8, 2008 at 7:16 PM  

Tami, thank you so much for "visiting". I missed you too! And it's crazy in our household as well :) Though lately it's getting much better!

I'm so sorry Maddie may not get a reconstruction surgery. Let's hope for the best - maybe the CAT scan will give you a hope... She's such an adorable and smart girl - what a blessing to you.

Dave March 8, 2008 at 7:29 PM  

Praying for Maddie to be able to have the surgery successfully and for God to provide the hearing aid. Wow, the roller coaster continues.
Gina

Julie March 8, 2008 at 10:49 PM  

Our son has had hearing aids since one year old. He is now 14, yes they are an added expense, but he does hear. You just need to surf the web for hearing impaired funding. In Canada they have many different groups that will help fund equipment for that kind of stuff. Shrines, Masons, Lion Clubs, or similar to the Variey Club related to Childrens Hospital in Canada. There has to be someone.

Christine March 9, 2008 at 11:12 AM  

I'm sorry Tami. I know how you want the best for Maddie. Just remember that you have already given her so much, and I know that she will be fine either way because she is in your family. :)

pearly1979 March 9, 2008 at 12:17 PM  
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pearly1979 March 9, 2008 at 12:20 PM  
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Mark and Courtney March 9, 2008 at 8:51 PM  

Tami, there's a yahoo group for deaf adoption as well. You might want to look into it and see if there are more resources on there for the hearing aid. Also, let me know if you want links to some sign dictionaries. Your friendly interpreter in St Louis is only too happy to help--although I know sign isn't the route you were planning on going, it might be useful in the meantime!

Kathy & Matt March 9, 2008 at 10:16 PM  

Thanks for the update after Maddie's appointment. I'm sorry the news wasn't better or more definitive, but at least we'll be praying for good news after the CAT scan.

God brought her into your lives - the perfect family for her, and He will help you find the best solutions for her hearing.

Please keep us updated. You continue to be in our prayers.

Waitingonmyua2 March 10, 2008 at 7:31 AM  

What about Shriner's hospital? You might call them. Even if they can't help, maybe they'll know resources for you for the hearing aid -- and a second opinion.

Lindy March 10, 2008 at 8:21 AM  

I am so sorry the news wasn't better at the doctor's office, but am hoping so hard the CT scan will show good news! I can't believe you still have to be on that wild roller coaster ride. But I do know this - you WILL get off that coaster one of these days and Maddie will continue to be a happy, well-adjusted little girl in a wonderful family. Keep hanging on - we're all with you! Things will get better.

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