Tuesday, June 7, 2011

Update on Lori

(from Jay)

For those new to our blog, we are blessed to have legally been the proud parents of Lori Faith for a little over three months now. And for a good portion of those three months, we have been working with doctors, nurses, audiologists, speech pathologists, radiologists, ENTs, and First Steps providers to determine the severity of Lori’s deafness, and to see if there is anything we can do about it.

Well, from a non-SLP perspective, we have learned that Lori is profoundly deaf, and that hearing aids do not help. We, then, started walking down the path of seeing if cochlear implants were an option that could help her. To determine eligibility, we have had to see about three doctors, several audiologists, a couple speech pathologists, get an EKG, get numerous hearing tests…but our most recent trip to St. Louis involved Lori getting an MRI of her head.

First and most important, let me say that when your child is about to be sedated and they tell you that you are not to let them eat ‘anything’…that they really mean it. And if you tell them that your child had one bite of bread because they were fussy and hungry, they will only make you sit there and wait an additional six hours until they feel comfortable proceeding. This past Wednesday, we experienced this exact event. Around 10:30, Lori was fussy, and Camille gave her a bite of a pastry we had from stopping in Perryville…at Hoeckle’s I might add…bad call on my part probably….but we thought nothing of a small bite of a pastry.

Turned out to be a big hairy deal, and they pushed our MRI from 12:30 back to 4:30 (6 hours from the 10:30 bread incident). So…we walked around a lot, and finally made a brief stop over at the Art Museum in Forest Park (which is across Kingshighway from Children’s Hospital). It was there that we learned that older, female, museum volunteers get very upset when an 8 year old starts touching very old, very expensive paintings. Apparently in the brief moment I wasn't watching Chloe, she decided to get a closer look at one of the paintings.  I thought they were gonna throw us out...

But we survived, and made it back to Children’s for the big MRI. Lori first had to get an IV inserted into her hand. She took it like a champ. I am often blown away by her lack of response to pain. I suppose that at an orphanage, there is no one right there to pick you up and make a big deal with you get hurt…combined with the fact that she doesn’t hear her own cries…she is amazingly tough, and doesn’t cry much when she gets hurt.

They wheeled her away, and we waited for them to page us on a restaurant style pager. She did great they said, but when we got to her she was out! She finally woke up, and we made our way home.

What we found out this past Friday, after all the smoke cleared, is that Lori IS a candidate for a cochlear implant, and they are hopeful that it would give her some level of hearing. (Stop and Clap or Shout or Praise God!)

There is one obstacle that remains…how to pay for it. Cochlear implants are very expensive, and for now, we are waiting to hear what our insurance will determine. If we get shot down, we won’t be done…we can then appeal to the insurance company and/or begin some fundraising efforts to pay for the implants.

For now, we ask that everyone join us in praying that insurance will approve the surgery. This will be life-changing for our little Lori.

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