Sunday, November 2, 2008

Long time no update.





My sincere apologies for that. In all honesty, we needed a bit of a break. A taste of normal, if you will. But, in what's been a typical cycle with Kelley's ear reconstruction, we're able to go for a little while, life as normal, and then things start to bubble up to the surface and we're back "on."

The break was nice, actually. But, the break is over.

Kelley "graduated" from Kindergarten in June, and started life as a big First Grader in September. Over the summer, we had her hearing tested once again per Dr. Roberson's recommendation, but we found another audiologist. Our previous doctor here in Portland kinda kicked us to the curb, indicating on our last visit that he didn't "need" to see Kelley anymore. We can take a hint. Personally, we feel it was because we chose a different doctor to perform the canalplasty. But - ours is not to speculate. We found another audiologist who is great - a real pro - and the Otolaryngologist he shares space with doesn't perform this type of surgery. No conflict.

So - the hearing test. Kelley got a so-so result, which means that her hearing has leveled off to where it will likely be from this point on. After sending the information to Dr. Roberson, his recommendation was that Kelley is NOT a good candidate for the titanium implement that would replace the middle ear bones, which I believe I have described before. The reason being is that her hearing loss is in a range of frequencies that the titanium implement isn't known to help.

Well, we don't want to put her under and give her another surgery, only to have the attempt fail.

The current recommendation is a hearing aid. And honestly, that's been a tough one for John. He was really hoping that the results would indicate she would benefit from the titanium implement. He's disappointed, and worried about Kelley needing a hearing aid. I, on the other hand, want to get things taken care of as quickly as possible, so Kelley can hear the world like her peers do. She's missing some things, and that makes me sad. One of the things that really brought this to the forefront again, however, is school. Her teacher has told us that she struggles to stay focussed, and she believes it's because she's not always hearing everything. We've gone as far as we can now without aiding her hearing and teaching her to compensate. It's time for action.

So, the difficult emotional side to this, is that for the first time since she was born, John and I were on different pages in regards to her care. I was forging ahead, and he was still working on accepting where we are, instead of where he was hoping we would go. We are working together again now, but it was a little painful for both of us.

In September we took Kelley in for a hearing aid fitting, and realized that she does, in fact, need another plastic surgery with Dr. Reinisch. He refers to it as "Stage 2." What this involves is reshaping her ear canal opening a little to make it more round. At the moment it is almost a triangular shape. She also needs to have a deeper sulchus, which is the pocket behind her pinna. These two refinements will allow her to be able to wear a hearing aid comfortably and without the fear of it falling off because it's ill-fitting.

Without these refinements, she is not able to keep a hearing aid in her ear without getting a squeaky feedback for the in-the-ear style aid. For the behind-the-ear style, the sulchus isn't deep enough to keep it in place.

Which leads us here: On November 29th, we will travel to Los Angeles to see Dr. Reinisch. Her Stage 2 Medpor surgery will take place on December 1st, and we will return home after a post-op appointment on December 4th. There is a minor skin graft involved, but certainly not like she had for her Stage 1 surgery. Dr. Reinisch will harvest the skin needed to deepen the sulchus from the same place on her abdomen, so there will be no new scars.

The last time we traveled, Ryan was a little tiny guy - 4 months old. Now, he's turning two in a week. We made the decision that giving all of our attention to Kelley is really important right now, and keeping a two year old happy in a hotel room would make that difficult. So, we're traveling without him. Grammy and Papa will come to the rescue here. I don't want to leave my little guy for that long, but I think it's best.

We will give updates on this blog throughout the process, and I promise I'll be a more frequent updater. :)

4 comments:

Jodi said...

Oooh - can you stop by on the way down? Are you driving? Can we meet at D'Land again?

Kim said...

I will keep Kelley and you all in my prayers. I hope that her surgery goes smoothly and that Ryan has fun with Grammy & Papa!

KIm

Fernanda said...

I will keep you all in my prayers as well. The results are amazing. What a beautiful ear. Take care :)

elizabeth said...

Great blog! I hope you'll consider adding it to the aggregator at Deaf Village (www.deafvillage.com) -- we'd love to have you as part of our community!

Also, hearing aids can be quite the fashion statement -- check out my blog (http://cochlearimplantonline.com/blog/?p=294) for some fun ideas to "jazz up your ears"! Research shows that even children with mild or unilateral hearing loss are at increased risk for behavioral problems or failing a grade, so amplification all waking hours is CRUCIAL no matter what a child's level of hearing loss. See: http://callierlibrary.wordpress.com/2008/08/20/outcomes-of-children-with-mild-bilateral-hearing-loss-and-unilateral-hearing-loss-2/

Best of luck as you continue to search for the best solution for your adorable daughter!