Chapel Update

posted in: Faith, Family | 0

Yesterday we finally were able to attend the long awaited cochlear implant appointment. Danny wasn’t able to ride up for the appointment  as planned, but my awesome Deddy rode along with me for the appointments which I am so grateful for.

He also provides a lot of comic relief! Seriously, I had the best time visiting with my Dad all day!

 

We are still scheduled for Chapel to have the surgery on her hand in mid-June. She will be in a full arm cast for two weeks. That might be a little bit tough so I’m already praying for my sweet little bit to have a lot of strength and resiliency during and after surgery. That’s only one month away! Whoa.

At the appointment with the ENT the doctor looked over her CAT scan and we discussed the possibility of cochlear implants. Her facial and auditory nerves are not located in the normal position, which makes things a bit more complicated. Chapel is missing one of the three balance nerves on each side as well- but usually the brain compensates for this loss and she does not seem to struggle with balance at all. On the side that Chapel has the facial paralysis, they are not sure yet if a cochlear implant will be an option. The best I could understand, the tubes that contain the facial and auditory nerves on that side are much smaller than normal. It appears that Chapel does have some muscle control on that side of her face though, so that gives us hope that the auditory nerve may be in place and would be workable for an implant.

On the other side it appears that a cochlear implant may be an option. The tubes containing the nerves on that side are still smaller than normal, however. The biggest concern the ENT had was that she wanted to ensure that she can safely complete the surgery (in which a good bit of drilling is involved) without damaging the facial nerve. The facial nerve is already within millimeters of the auditory nerve in a person with normal nerve placement.

Also, there is a small mass of “soft tissue” on the side that appears to be most compatible with a cochlear implant. Apparently it happens on occasion that a child is born with a cyst or mass in the inner ear (there is a name for this that I cannot remember). This indefinitely has to be removed before anything else can happen. In cases where children are born with this, the cells will continue to multiply and can cause damage to the facial and auditory nerves so this cannot be left untended to.

So first the ENT wants to do an MRI that will give us a very close up picture of the small mass of cells, and the auditory and facial nerves on both sides. Thankfully, there is an expert on facial and ear anomalies who will be reviewing this MRI and discussing it in depth with our ENT. We will know within days of this sedated MRI if cochlear implant(s) will be an option.

The ENT said that if we see that cochlear implants are not an option, we can go on to plan B. I asked what that meant. After all, I thought cochlear implants were the last resort apart from a divine healing, which I certainly believe is on the table always! She told me that there is now an option for a brain stem implant. It bypasses the cochlea altogether and is implanted directly into the brain stem. Only a few places in the country perform this surgery now, but it has the same results as a cochlear implant. Isn’t that amazing? People who are missing or have damaged auditory nerves can have the option of hearing as well! Pretty cool.

So that’s where we are at. We will receive a call about the MRI date any day now, and we are also being referred to a pediatric optometrist  who will do an examination of Chapel’s eye on the side that has the paralysis just to ensure that the eyelid is shutting, to protect the eye adequately.

We are not discouraged by the visits we had, we are only a little discouraged by further delays. But the God who loves Chapel more than we can imagine knows just what she needs and we will continue to step forward as He leads. Thank you so much for praying for our family and for our Chapel!