Hi! I hope everyone is doing well. It has been a long, long time since I've sent out an email, so I figured it was time. Remember, if you are interested in receiving more frequent updates, I've been using the opening page of my website to pass on that information.
Well, I've hit a huge milestone in my CHARGE life... making it to my first birthday. I really enjoyed my day and LOVED my birthday cupcake. The icing was divine! I'm thinking of celebrating again with another cupcake on the day I was suppose to be born (October 1) since the doctors use that date to calculate everything under the sun. I just know this year is going to be much better than my last. I'm planning on cutting long term ICU stays out of my life from now on.
Now that I am bigger though, that means some long awaited surgeries for me. First, the great docs at Children's hospital will attempt to open my nasal passages again (coanal artresia) and will put those straw like nightmares (stents) in my nose for 6 weeks. When those are removed, hopefully I will be getting my cochlear implant (I've been medically cleared for this surgery, but private insurance has denied coverage so we are praying that some government aid comes through quickly and agrees to pick up the cost of the $80k procedure). If anyone is interested in hearing what the world sounds like through a CI (cochlear implant), check out the following link: http://www.utdallas.edu/~loizou/cimplants/cdemos.htm
Because I don't have a full cochlea, we are hoping to get an insertion depth of half (the 22 mm simulation). Keep in mind that these examples don't take into consideration how the brain interprets the information and once the implant is placed, a LOT of therapy has to be done to train the brain to listen. Our goal with the implant is to make me more aware of my environment and to help me develop to my fullest potential. Some kids with CHARGE end up being non-verbal and there really isn't any way to predict that.
Since we want to do the implant surgery at the same time the stents are removed to avoid an additional procedure/anesthesia, nothing can be scheduled until we have funding approved. If all goes as planned, after the implant has been placed and I've had a few months to recover, my airway reconstruction surgery will be attempted (granted my nose stays open this time. third times a charm, right?). This will be a two step process, but I'm hopeful my trach will be out next summer. I'm thinking positively :)
It was great talking to you! XOXOBen
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