Friday, December 15, 2006

More on bilaterals

As soon as I had a chance, I posted to Ci Circle and told everyone what our surgeon had said. I admit that I'm somewhat of an addict when it comes to my various online lists. I was really interested in their feedback because there are some very intelligent and articulate people on that list who have been through this. The responses were as thoughtful as I had expected and of course it struck a cord with those whose children (of all ages) are bilateral implantees. There is a mom whose 11 month old is getting simultaneous bilateral implants. There is a mom whose 6 month old was recently implanted and will receive implant #2 in another 6 months. She also has a 5 year old with 2 implants. Ci Circle is an amazing source of information (on any Ci topic) and where else do you find people with their finger on the pulse of information, than these concerned and involved parents?

A few people said that our surgeon sounds reasonable and not as conservative as I painted him out to be. Another mother in Boston told me that their implant center does balance/vestibular testing before implanting either one or 2 implants and they are the only center in the country doing so. I know the mother of the first and youngest U.S. child to receive bilateral implants and she is the one who says get a second opinion. BUT, her children don't have CMV and a possible case of cerebral palsy. That sort of shades all of the decisions that we make from here on out.

As our surgeon made clear, there is no actual research on bilaterally implanted children. The first such surgery just took place in 2002, so this is very cutting edge and those are the kids who are being researched now. I wish he had the time to read the posts on Ci Circle because I think he would be very interested in all observations from parents who are raising bilateral children. Their experience is as valuable to me as a research paper. They report their children hearing normally in noisy situations and doing much better and needing less support in public school. However, I think most of these kids deal with deafness only and don't have other medical issues to throw in the mix. They're "vanilla deaf", and Ethan is "rainbow with sprinkles deaf".

Wednesday, December 13, 2006

Update - ville

Well, we're home from our visit in Cinci where we saw the ENT (Ci surgeon), the developmental pediatrician, and the implant audiologist. All were very pleased with Ethan's progress! It was a very informative trip and fairly emotionally exhausting for some reason. Well, I know the reason.

As my earlier post suggests, Rich and I had our hearts set on getting Ethan another implant. However, the visit with his surgeon was a reality check and an eye opener. Dr. Arjmand said there is little to no research/medical data on bilateral implants in very young children. He is concerned about that and the fact that there are issues with balance that are unknowns since there is so little research. He is concerned about the balance issue with Ethan in particular since he has motor issues and is already in PT. He basically made it seem like he'd do it, but he's cautious and urges us to proceed with caution. He and the audiologist said there is still a window of 1 to 3 years that the surgery could be done and provide maximum benefits, so what's best for Ethan might be to take it slowly and see how he develops.

Dr. Wiley was overall very impressed with his gross motor development and applauded the PT's working with him, as well as his parents hard work and effort :-) She put his fine motor skills at 12 months (and he's 15, almost 16 months old now) and his language skills at 18 months. If his fine motor skills don't develop up to par she might recommend we take him to an occupational therapist. I think he'll come along fine, he's just working so hard on his hearing right now, so one thing at a time! She also recommended we try melatonin for his sleep issues. I would be a whole new woman if he would start sleeping through the night, so I say let's give it a shot. Last of all, she and I discussed his eating habits and she felt that his speech therapist should work on oral motor skills with him so we can avoid problems with learning to speak. Did you know there is a big connection between eating and talking? Your mouth uses the same muscles, so since Ethan shows a preference for creamy texture, he's not fully developing the other muscles that are needed for speech.

The final visit of the day was with the implant audiologist who said "he's doing incredibly well with his implant"! He heard her voice as low as 15 db in the booth, which is a whisper! We were so thrilled with his progress and she sent us home with 4 new maps. She commented that Ethan's high tolerance to pain has really made it possible for the mapping to be aggressive, which, has made it possible for him to progress so quickly. Rich and I have always known he has a high pain threshold, but we never imagined it would serve him so well in learning to hear.

So in summary, yes I had the wind let out my sails yesterday. We wanted that second implant so badly. Today I feel differently though. I really respect everything our surgeon said and have to agree with him. We're just beside ourselves that Ethan is hearing so well with one implant! We've got a miracle boy whether he's got one implant or two.

Monday, December 11, 2006

GREAT News!

We just opened the letter of approval from BCMH (Bureau of Children with Medical Handicaps)! They pay for cochlear implant surgery! We can get Ethan another implant! He will hear from both ears! Yes, we're freaking out here and will continue to do so for quite some time. Our dream for him has always been to go bilateral with the implants and hear as closely to normal as possible. Kids with 2 implants are wildly successful and do so much better in noisy situations, like cafeterias, gymnasiums, even classrooms. This could do wonders for his daily hearing.

This news came at a great time as I'm taking Ethan to see the surgeon this week on Wednesday. Rich cannot make it, but Aunt Penny is going and she is great at making mental notes. I plan to tell him about our approval and discuss getting the ball rolling ASAP. Wow!

As for Ethan's progress, his deaf teacher was here today and said that he has surpassed all expectations that she had for him at this point. We are always pointing to our ear and saying "I hear that, do you hear that?", so now he points to his ear (well his head) when he hears things. Lately he has pointed to say "I hear that" when the phone rings. Now he even points to the phone itself, which means he's not only detecting sound, he's locating it. That's HUGE!

I have to go hug someone, I'm too thrilled to sit here and type. What a VERY MERRY CHRISTMAS!!!

-Heather

Thursday, December 07, 2006

New Pediatrician = Happy Heather



I finally did it this week, I fired Ethan's local pediatrician. He doesn't know this, but that's not the point. We're never going back to that dog and pony show again! He has no personality and has never shown an interest in Ethan. We saw him two weeks ago and he had not yet seen E's new implant, so naturally I expected to have a conversation about it and how surgery went. He didn't mention it at all. Red Flag! Then this week I called the office to see if they could look at Ethan for a possible case of chicken pox (mom over-reacted, it was dry skin) and they told us to stay in the car and he would just come out to look at Ethan in the car. Say What???

So...the new doc is a woman who immediately showed a great interest in Ethan. She showed competence and compassion and really put my mind at ease about his weight and diet. She was very excited about the implant and asked several questions. As Aunt Penny reminded me later (she accompanied us on the trip) she also asked me 3 different times if there was anything else I wanted to talk about. Loved Her!

Oh, and this place has a doctor on call all the time. What a concept. Talk about peace of mind. I feel like a huge weight has been lifted!

Friday, December 01, 2006

So many doctors, so little time...

Ethan's got a few things in the works that I thought I'd mention. So far I have only used the blog to discuss his implant, but he has several doctors and many issues that I guess some of you may not be aware of.

December - We see the ENT surgeon who did his implant surgery, presumably for a check-up, but Rich and I want to discuss getting Ethan's other ear implanted. We also see the developmental pediatrician, she's outstanding and we always look forward to those appointments. She is the one who said he might have mild cerebral palsy, so I'm interested to see what she thinks about him now that he's improved his gross motor skills.

January - We'll see the pediatric opthamologist to discuss his eye issues. He has a "lazy eye" that turns out frequently. In August she said to come back when I'm seeing it happen at least 50% of the time and that time has come. Recently I've even noticed his other eye turning out and that really freaks me out. She mentioned the possibility of surgery to correct it. We also see the pediatric G.I. specialist whom I'm very interested to speak with. He ordered tests that were done in August and we haven't seen him since, even though we know the results of the tests. Ethan has severe acid reflux and it has caused him to stop breathing and turn blue at least a dozen times. Fortunately we haven't seen an episode since May (they put him on a more aggressive medication), so now I'm just wondering when we need to increase the dose because I don't ever want to witness another apnea event as long as I live.

Before I close, let me just say that his physical therapist (who we see every week) has placed an order for a product called Benik's. They are neoprene supports that basically look like a wet suit. He'll wear them under his clothing (all the time) and they'll provide compression, support, and stability for his low muscle tone as well as provide proprioceptive input for his sensory processing disorder. She took 15 measurements of Ethan for this new "get-up" and it will arrive in 2 weeks. Ought to be fun changing diapers with that on!!

Thanks for reading,
Heather