update

It has been a long week here at the Walker house. On Monday we went and saw Dr. Bauer (k's surgen). He is scheduled to get the implant in his right ear on December 13th. His implant will be turned on January 9th. I am so excited for this new chapter to unfold for him. He is such a bright boy who loves to learn, I just know that god is guiding us down the right path in choosing this option for our son. We got his speech report card this week, and I have never been prouder of him. He is now finally starting to make the m p and b sounds, he even completed three goals on his IEP. God has great plans for this child, and I am so thankful that I can say I am his mother. Preston has been sick all week with brochiolitis and an ear infection. So he has been cranky, but still doing a lot better with leaving his aids in. We went and saw the geneticist from Chicago on Thursday. He decided based on looking at the family history that he is going to start by testing for connexion 26. From what I understand this is one of the leading causes of congenital deafness. We should have the results back in approximately three weeks. It has been a good week, despite Wednesday night Kayden decided to break his hearing aid in half, I still have yet to receive an answer as to why he did it..lol  So for now he has a loaner until his is back from the company.

Are we making the right decision

Are we making the right decision in regards to Kayden? In my heart I know that we are, but my brain has been getting the best of me the past few days. I have been consumed with googling over and over cochlear implants, reading and rereading the same information over and over. I am scared that what if it does not work right and we destroy what little hearing he has left, or there is the side effect of bacterial meningitis. While I know that the risk of getting meningitis is low it still freaks me out. My baby has been through so much already in 4 years of living I would hate to have something so horrible happen. I know that we got the meningitis vaccine almost two weeks ago, so it provides some sort of piece of mind. I have to keep telling myself that god will not allow that to happen. God made these doctors to do his work in healing my sons. I guess the mom in me is starting to freak out because I know someone is going to be cutting into my son's skull. To add to my apprehension, Kayden has been sick with a cold all week. Almost everytime he gets a cold is ears drain from the tubes. If his ear is not clear on Monday when we go to see Dr. Bauer then she will postpone the surgery for a few months. So I have been O.C.D. on checking to make sure his ears are clear. He probably thinks I am nuts. Ha Ha! On a more positive note Preston has kept his ears in for three days straigh without trying to take them apart or chew on them. This is a record I hope he finally is realizing that these things do help me hear. I just wish he would catch up with language. He still only has about 20 words and he is 27 months. I know he will. He is already talking so much more than Kayden ever did at this age. I just hoped since he got hearing aids so much sooner that he would catch up alot faster. It will happen in God's time. I hope everyone enjoyed my rant I feel better so I will go for now.

Our journey from the beginning

Hi! We are the Walker family, and we have two boys Kayden who is 4 and Preston who is 2. Both of our boys have been diagnosed with bilateral sensioneural rapidly progressive hearing loss. Kayden was not diagnosed until he was 31/2 years old. Both boys passed newborn screening so we had no fear of them not hearing. It wasn't until Kayden was around the age of 18 mo. when the maternal instinct kicked in and I began every three months at the ENT telling them that the child could not hear. Every test they did on K came back questionable. This boy had no language at the age of 21/2. He was frustrated, he would hit me, bite me, and do the same to others. We had him evauluated for speech therapy 4 mo before he was three due to their still being no language. At this time the ENT was telling us that it wasn't his hearing, and even if it was it would not warrant hearing aids. He said K's lack of language was developmental. So I put it on the back burner for a little while and continued on with speech twice a week for my son. In November of 2010, we had the most awesome speech teacher at a nearby school. She did a preschool language assement on Kayden since he was working so well for her. The results devestated me. They showed that my son only understood language at the level of a 1 year old(he was 31/2). I immediately asked her could this be because he can not hear. She said yes and asked me why. She then refered us to the school district audiologist who tested K the next week. The results yielded a moderately severe hearing loss in both ears. I should have been devestated but instead I was so happy that someone finally had listened to me , the mom. I knew this was what was wrong and why he was not talking as good as he should have been. Then came the grieving process. I   was devestated. Could he be mainstreamed, will he ever talk, etc... My husband helped me through this time by telling me it could be worse and he is right. I know their is technology and language out their to help him. In Dec. 2010 K went to SIU at St. John's and saw his new audiologist. She was awesome, truly a gift from god. She helped us through everything, she found the funding and everything for his new magic ears. On January 10,2011, during a blizzard we drove up to get his magic ears, the look on his face was priceless. On the way home he was in the back of Dad's truck and could hear the exhaust pipes, and he was absolutely amazed. It was one of the greatest day's of my life. On January 22nd Preston was 18 mo old and he got tested for the first time. They found him to have a moderate hearing losss. He received his magic ears on March 7,2011.  Both boys hearing has continued to decline about every two in a half months. Kayden's hearing has worsened so much he is now what you would consider profoundly deaf and his hearing aids no longer work for him. He will be getting his first "fancy ear" cochlear implant on the right side in a few weeks. Preston is still in hearing aids for now, but the doctors see him with the cochlear in the near future also. On a more positive note since Kayden and Preston have received their magic ears, their language has improved. Kayden is talking in sentences, telling stories, he is hillarious. Preston can only say a few words, but he sure can sign what he wants.