Dillon's ear appointment today showed that his left ear is worse than the right. He is severe to profound in the left. This means that down the road he may be able to get the implants. I learned that they will only ever implant one ear anyways. This is due to the fact that they destroy the little tiny hairs in the ear when they place the parts inside it which totally removes any hearing that the person did have in that ear. Therefore they will only do this on one ear in case something happens and the implant doesn't work right or illness causes it to no longer work etc. At least then they would not leave the person without any hearing in both ears. This being said Josiah and I may have to decide if we want to get it in the left ear later on, it is our decision. It would be surgery on his head, which of course always has dangers, and the insurance may not pay for all of it because it is considered elective. My opinion, and this is without having seen my husband to talk it over with him, is that I would want to wait to make sure he could understand language before we put him under the knife to improve the hearing from what hearing aids can give him. But this is not something that needs to be worried about for a while.
I spoke with his neurologist today. He gave him permission for Dillon to undergo the Vital Stim therapy but he would prefer I wait to see if the problem is being caused by the medicine. Dillon has been so tired that he doesn't even lift his head anymore due to the full doses of two medicine as we are in the process of switching over. Therefore, he told me to go ahead and move things along faster. Instead of waiting another week and a half to start lowing the one medicine I can start lowering it tonight. This means Dillon would be off of it Oct 25. If he does not have seizures then everything is good, if he does he will have to go back on it. This medicine could be causing a lot of the issues that we see in Dillon - and it is my prayer that it is in fact the cause. I say this because if it is the cause we will soon be seeing improvements. The eye doctor, yesterday, told me there is no improvement and if anything Dillon is starting to get a wandering eye. His right eye is moving upwards when the left is not. This, too, could be from the medicine. To sum it up - the medicine could be causing all, none, or any combination of: unable to swallow, not sucking, blindness, not having good control of his head, not crying (I believe but don't quote me on this one), wandering eye, his extreme tiredness. The eye doctor also told me of a Mom, much like myself. She is young, loves her baby, usually smiling, etc. Her daughter was in six times (about 2.5-3 months in between each visit) and every time she came is she was saying "I know she is better, I just know it!" and the doctor and nurse said it broke their heart to tell her nothing had changed each time and she left crying. This week she came in and her daughter was a different baby! She was smiling and laughing reaching for toys and acting like a normal baby. Her vision suddenly came! I am trying to find out if they will give my contact info to this mom so I can find out what toys/stimulus she gave her daughter.
Please PRAY SPECIFICALLY for these:
1. Dillon would not have any seizures as we take him off this one medicine.
2. The medicine would be the cause of: his vision problems, his sucking problem, his swallowing, his energy, his head control, and even his ears (I don't know if this one is medically possible but with God it is!)
3. His ears would improve enough that we won't even need to decide about implants or not.
My parents church in Ohio was praying (and still is...THANK YOU!) when we were in the NICU and they said when we asked for them to pray specifically for Dillon issues they saw God answering their prayer request much more than when they were just praying in general for him. I think this is because we are looking at it different if we pray specifically, but I also think God wants us to go to Him and be very specific. God doesn't want us to say "God, please save everyone in the world, bless all our missionaries, and heal the sick." He wants the names of the people who are on our heart, the ones that we are trying to win. He wants to hear us ask for the needs that the missionaries have asked us to pray for, and he wants us to go to Him with our health needs and ask Him to work a miracle in the specific ways. God's answer may be no, but at least He gives us liberty to go to Him with boldness and ask.
Thank you for all your prayers. I have been told that people read my blog that don't usually comment...I would appreciate if you could just comment "hi!" and leave your name (even a first name and something that I would know who you are by it) so that I know who is reading. It amazes me how many people are praying for my son, my husband, and myself. However, to keep with what I have just been saying, I would like to thank God specifically for each person who reads this and prays for us.