Well once again we being this update with an apology for not updating sooner. It has been extraordinarily busy this week and when you are the one that has to initiate follow-up it adds to the growing list. We do still have more photos from Thanksgiving to share and maybe over the weekend we can accomplish getting those up. Our ENT appointment was a little disappointing. It was so because we really did not come out of there with any new knowledge or a plan. It was more of a meet and greet so to speak. He did take the opportunity to discuss his thoughts. Basically, he needs another more complete ABR before any real decisions can be made. There were some positive signs from the MRI that was done back in September, which was a shock to us because we were told something quite different. However, before we get too excited over those results the merely tell us that certain options are now open to us surgically if the ABR results and a pending CT scan show certain tendencies. His words were, “ there are about 12 different scenarios we could go with, but I do not have enough information to make a confident decision, yet.” He promised to be an advocate for Elias and did recognize that there is a time crunch of sorts to try and achieve certain goals. Unfortunately, Elias airway will be the main dictator for success on his end. That is certainly frustrating. We did press the hearing aid issue and he agreed with us, but he had a very solid argument against moving forward. An argument that we can buy into and understand. The main thing now is to get this ABR completed with the next surgery, which we will hopefully get a timeline for in the next 2 weeks, but it looks like January sometime. Once we get all the information from that he can narrow the choices down. One thing Katharine picked up on reading between the lines, while he would not come out and say it he strongly suggested that hearing aids will be something we try, but it seems as though he does not think they will be effective enough if at all based on what he knows so far. He wasn’t going to commit to anything yet, but as we said it was the hidden message Katharine picked up on. That doesn’t mean that Elias can not have some element of hearing still. There would just be other methods to achieve this. It is all very confusing and frustrating we know. He is a very knowledgeable doctor and we appreciated his candor and opinions. We also feel that he will do everything he can to get Elias the abilities he needs through some method, be it surgical or other.
The nursing situation has not changed since our last update. Honestly though if there is anything in the works we do not know. We have left messages and have not had them returned. I almost get the feeling they are avoiding me. Well they have to call today because the FA team ordered another IVIG for him on Monday or Tuesday. So I will just bring up my concerns then. Other than that, not too much going on. Elias is still having a blast at home and becoming more and more curious with each day. It is so great to watch him flourish. We are waiting for a date on a new IFSP meeting for his home therapies and hope to get that rolling very soon. Well back to the task list that is waiting, but we wanted to take a moment to update everyone. Have a great weekend.