Isaac's World

Isaac is Deaf but hears with cochlear implants. He received his first cochlear implant on September 25th, 2006. He received his second cochlear implant on September 10, 2008. This is his journey with sound as told by mommy.

Friday, June 27, 2008

An interesting turn of events...

I just thought I would post an update on our crazy bi-lateral journey. Our surgeon from CHOP called a few days ago and told us that CHOP is again doing bi-laterals. He said that they straightened all the stuff out and Isaac could be one of the first ones he gets in for surgery. He originally told us he could get us in on August 4th. Today his office called and offered to have Isaac in on July 9th. This is sooner than our September 10th surgery date at GBMC. Ian and I thought about it and prayed and we feel like GBMC is the best choice. Besides, we already waited this long, what is a few more months. I never really had a "warm and fuzzy" feeling from anyone at CHOP. They all did their jobs, but never seemed really and genuinely interested in Isaac besides the details of the job. Another thing is that our surgeon from CHOP would not write me a letter of medical necessity for Isaac when we were fighting the insurance company. He and the rest of the "team" at CHOP feel like bi-laterals are beneficial, but not medically necessary. This is insanity to me. Of course, it isn't a matter of "life and death" if Isaac can't hear out of both ears. But then, it isn't a matter of "life and death" if he couldn't hear at all either. I told the surgeon this and he didn't really respond to me. He is a really nice guy, but he didn't help us when we had no hope of resolution even after repeated attempts from myself and the Let Them Hear Foundation. This was the biggest deciding factor for me. I do wonder if other parents of CHOP patients have had similar experiences in this. Fortunately for us, everything is working out well and we have another wonderful facility to transfer to. NOTHING in this bi-lateral journey has been easy, ordinary or without tears. I can only hope and pray that we are making the right choices for Isaac. After all, we are doing this for him because we love him and want the best for him. Is 2 1/2 months that much longer to wait for a group of caring professionals who helped us when no one else would? I don't think so. We will be taking our business there.

Wednesday, June 18, 2008

Surgery Date....Again

Well, I am finding myself in this situation again. We have a surgery date again. Although this time around I am more educated in many ways. It is farther away than I had originally hoped, but in the whole scheme of things, only 5 months will have passed since his original cancelled surgery. This is a huge chunk of time for a 3 year old, but Isaac is doing so well with only one implant that I am not very concerned. I have no doubts about his ability to "catch up" his newly implanted ear to his right ear. Isaac will have surgery at 8:30am on Wednesday, September 10th 2008. This date is almost 2 years after his first surgery. I'm going to cut this post short because this week is VBS at our church and I am helping to teach the Pre-K through 1st graders. It is tons of fun but also exhausting as I also coordinated the props. Have a great day everyone!

Friday, June 13, 2008

We love GBMC

We could not have asked for a more perfect day yesterday. Our trip to GBMC took only one hour and we didn't have to pay turnpike tolls either! Even Noah enjoyed the trip. We met with our audiologist and she was the nicest person. The CI program at GBMC is smaller than the one at CHOP, but this makes for much more personal attention. Our audiologist was genuinely interested in both Isaac and Noah. She got out a slew of toys and spread them on the carpet for Noah to play with while we talked about Isaac. The whole vibe at GBMC seemed friendlier to me than we are used to. Instead of only telling us what we need to improve on with Isaac's speech, we received lots of positive re-enforcement. We did a little bit of testing in the sound booth and we got wonderful responses from Isaac across the board. Isaac was so attentive that she was able to get responses from him at the 15-25 db range. I credit the audiologist for keeping Isaac's attention by playing games with him that encourage his full participation. She was so good with him. We selected the processors that we are interested in for his 2nd implant. We are choosing 2 beige for him because he already has 2 blue. She let us know that they could re-program his other blue processor so he could wear it on his newly implanted ear. After we left the audiologist, we were on to meet our surgeon. We had another smooth meeting (well as smooth as could possibly be for keeping a 3 year old and a 1 year old entertained in the waiting rooms). After looking at Isaac's CAT scan from 2 years ago, the Dr. said that Isaac's left ear would actually be the easier of the two to implant. He was excited about that. He was shocked as well with CHOP's recent suspension of the bi-lateral program. He is very excited to operate on Isaac and we are waiting for the surgical scheduler to call us with a surgery date. He said it would be one to two months from now. The only concern I have is that for 2 days, Isaac has to wear a bandage on his head and it could be difficult to put his existing processor on his head. Does anyone have any experience with this? It would be difficult if he couldn't hear anything for 2 days until he can take his bandage off. We are very excited about GBMC. It is a true answer to prayer.

Thursday, June 05, 2008


We don't have it in writing yet, but I just spoke to our representative from the Let Them Hear Foundation, and Amerihealth Mercy has approved Isaac's bi-lateral implantation! Now we have been approved by our primary insurance and medical assistance! This has been an incredible week! Praise Jesus!

Wednesday, June 04, 2008

Thank You Jesus!

So much has happened in our bi-lateral journey. I can finally say that we are reaching a happy place. Bye Bye CHOP....Hello GBMC (Greater Baltimore Medical Center)! God has His timing with everything and I am learning that slowly and painfully, but also joyfully! In church on Sunday, the Message was on putting God first and loving Him before anything. It seems like a pretty common sense thing, but it actually hit a nerve in my soul. I finally came to the place where I said, "regardless of the outcome of this, I will love You Jesus and not worry." This led me to make phone calls that have changed so much for us. I want everyone to understand that this is not anything I or anyone else has done, it is God. He is the one who gives us strength and can change things. Even though I made the calls and Let Them Hear is working on our behalf, God did this.

I will try to make a long story short. Our primary insurance never denied Isaac's 2nd cochlear implant. CHOP "dropped the ball" and told us they denied the coverage. Our insurance does not need a pre-certification for outpatient surgery (CI surgery is outpatient). CHOP called to get pre-certification and was probably ignored since this is not required. The only thing I can understand is that CHOP interpreted this lack of action as a denial. Since CHOP heard nothing, they were relying on medical assistance. This is where our battle came in. We were trying to fight medical assistance. Now, we don't need to!

Every last detail seems to be falling into place with GBMC. First of all, they are only an hour's drive from our house as opposed to a two and a half hour drive to CHOP. Secondly, GBMC participates with our insurance plan. Thirdly, I made a phone call in the morning and got a return phone call from GBMC within a half an hour. The call came from an audiologist. Not a secretary or someone who would just gather information, but someone who genuinely cared about our situation and listened to me for over an hour on the phone. By the end of the day, I had an appointment scheduled for Isaac's initial consultation and a packet of information on the way to our house. Fourthly, the people at GBMC told me they would contact another bi-lateral family from York, PA and have them get in contact with us to tell about their experiences with GBMC. By the end of the day, I had spoken with this amazing woman about her son and her experiences in this crazy journey. Lastly, this morning I made an appointment with the CI surgeon and it happened that their first available appointment was fifteen minutes after our consultation with the CI Team at GBMC! This means we only have to make one trip! THANK YOU JESUS!

My faith has been tested so much during this journey and I am sure it will continue to be tested. Now I know that God's timing is the right timing. He is the most important thing in my life. He should come first. Before anything and everything. When this happens, everything falls into place. Praise Jesus!

P.S. Isaac's appointments are next Thursday, June 12th. Talk about quickly!

Sunday, June 01, 2008

Mommy's Little Rocker

Isaac loves to play Guitar Hero for the Wii. He always asks to ,"Fight the mean man." He says this because the characters look a little mean and he loves it when they get booed off stage and put their hands on their foreheads. This happens quite frequently because he doesn't have the coordination to actually play the game. I can't take credit for taking the picture. Aunt Lydia always gets the most amazing shots of the kids. Thanks Aunt Lydia!