This may be long and boring and detailed for many of you but #1 as I have said many times before this is often my means of journaling and it is a great way for me to look back and see where we were and most importantly to be see how God has worked. #2 many of you have asked the details so here you go and lastly none of it is a secret and we need as many people praying as will do so.
We have known since Sallie was 4 mths old that she was hearing impaired. All testing indicated her loss was predominately Conductive Hearing Loss which indicates there is some type of problem with movement of the sound waves through the ear. We have never really known a reason for this and the lists of possible causes is long and could be multiple reasons in her case.
We first began with hearing aids which when worn (which was not a lot because of ear infections and a little later cholesteatoma or tumors in the ear) seemed to give her a decent hearing range. Over time we saw less results from the aids and because of the type loss she had moved to a BAHA (bone anchored hearing aid). This is the device she is currently wearing. It is intended to be implanted which was has been our intention for a while now but there was always something that did not allow that to happen. She wears the device on band.
Back in the fall she got some really nasty infection in both ears. We ended up back at our ENT who told us she was going to have be put to sleep to get all the debris, etc out of there. The day we were in his office we asked about moving forward with the implantation of the BAHA. He had his audiologist do a quick booth test to look at Sallie’s hearing that day. The tests indicated more of a nerve loss (Sensorineural) which as I stated before had not been the case before. We were all baffled by this. He ordered that an ABR (Auditory Brainstem Response) be done while she was sedated for the surgery.
The audiologist came out after doing the ABR and told us that she could not get any response from her. We were shocked. Yes, the levels on an ABR only go so high. However, she had never not responded at all on an ABR. We chose not to share this info until we knew more. We had no answers…
Our ENT discussed with us the possible options for Sallie if indeed we did have a clear picture of this change in her hearing. He then scheduled a MRI to look at the structure of the ear in order to see if there was anything that would explain why we were now seeing her hearing worsening and a different type hearing loss. He also scheduled some more extensive booth testing. He was very straight forward with us that each option brought many challenges and none were really “good.”
We went back this past Thursday to discuss all of these results with him. The MRI did indicate a problem. The cochlea is made up of 3 chambers which should be equally sized and with a division between them. 2 of those chambers hold sodium and 1 potassium. One of Sallie’s chambers (on both ears) is larger than the other 2 and the division is not as it should be. SO, the sodium and potassium are mixing which is creating a chemical reaction which is then eating away at the hairs on the cochlea. The fluids travel around these hairs which creates sound waves which are then sent to the nerve in the cochlea which then sends a message to the brain which is how we hear. Because her hairs are being destroyed this is causing the increasing hearing loss and yes will continue to worsen. Are our bodies which God created so intricately not just amazing?!? WHY do we ever doubt HIS power???
We are left with 2 options. We originally thought we would have a 3rd option but he took one of those off the table. She is now a candidate for a cochlear implant. Sounds great, right? WELL, with Sallie there is always a twist. One of this issues is that in fighting the cholesteatoma in the past all of her middle ear was removed which means there is nothing to attach the electrodes to. However, he feels that he could take some muscle from her head (or maybe other areas) and build something inside the ear to attach it to. He is consulting with more physicians on their thoughts on this. For us this really is not as big of an issue as the second problem. We have the confidence in him to do that if he says he can. The second problem is the cholesteatoma. For implantation they basically obliterate (his word) the back wall of the ear. If he left one skin cell in there it would be breeding ground for the cholesteatoma AND it would be very hard for us to know that it was there until it was causing major issues. Also, with the implant there we could not do a MRI to detect it. If it did come back and the ear has to be opened, the implant would then be destroyed. He does have a few ideas as far as doing the obliteration a little differently and ways that we might could monitor the cholesteatoma. Once again, he is consulting with other physicians. The cochlear would take her to a normal hearing range. He also talked a good bit to us about our expectations. He does not want us to go in (if we choose that route) with the expectations that she is going to begin to speak and speak normally. Thankfully, we are past that. If we go with the cochlear and she does learn to communicate verbally great but if not we are OK with that as well. She loves sign and has picked up on it really well and we are fine if that is her permanent means of communication. We really just want to give her the best hearing we can and expose her to as much sound as possible. The other option is for her to continue to wear the BAHA which the knowledge that her hearing is in a progressive state.
What are we going to do? We have no idea at this point. None! We have the facts. He gave us some information on a couple of different cochlears. We both feel it best to not look at that information right now. God created Sallie, HE has a plan for her, He knew all of this. We might have been surprised but He was/is not. We want to do what He wants us to do. We do not want any outside factors to play a part in our decision making. Each choice comes with many issues and we have to have peace that we are choosing HIS way and that He will take care of those issues in His way. I know some may think it is a little strange for us not to educate ourselves on the cochlear at this point. We know the facts from her testing and a very thankful for a clear picture there and we know the basics of the implant and we feel that is all we need to know at this point. We just have to wait on God…
We REALLY need prayers that we will know what He would have us to do in His timing.
I have to end with a praise! He also ordered a MRI of her brain. Not that this tells us everything BUT she has completely normal brain structure! PRAISE HIM!
