SUCCESS!

Monday October 22 was the day of truth for James. We turned on his cochlear implant. The first thing they did was run some impedence runs to make sure the implant and electrodes were working. Those all went really well.  They explained that the turn the implant on in levels called "units". Units of what I have no idea...but units they are. The impedence runs they did were at a level of 30 units and we saw no reaction (not uncommon at all) so we knew at 30 units he wasn't hearing anything. Most people when they are done with fine-tuning the programming are between 150-350 units. So they slowly increased it from 30 units to 35 and so on until we saw some response. He let us go up to 100 units and he wasn't too fond of that so we backed off to 90 units and left it there for the first day.
To say it was exciting would be and understatement. Watching that amazing little react to sound for the first time was incredible. You could see the look on his face-a little bit of confusion and him looking around. We even got a little bit of a smile after a bit. We're so excited for the world that this opens up for James. Even if he won't be able to talk to us, he'll now be able to hear us and the world around him. I can't even imagine not hearing my mother's voice or the sound of rain. How exciting for him!
The first day we left it at 90 units and kept the implant on as much as we could. He did really well with and didn't seem bothered by the sound. At one point he was taking it off constantly-but he thought it was funny and a fun game to play with mom.
The second day we put it back on again and headed to the doctor's office. While in the waiting room Elliot was playing and there was a little girl there too. She wanted to know his name and her dad told him to go ask him. She asked him and he proceeded to ignore her. A few minutes later she tried again and this time he actually answered. "My name's Tony" Now, if you know Elliot you'll know that he loves Ironman (about as much as Spiderman) and of course Ironman's name is Tony Stark-so that's where he got it from.
Back to James-once in the office we slowly increased the units. We watched him for negative reactions to see if we'd gone too far. They were hoping to get up to 120-130 units-he blew them away and allowed them to go up to 150 units! He got up to 170 units before he got really mad. So they left it at 150 and slowly each day we increase the volume in the morning and see if he's ok with it. If he is we leave it there and if not we go back to where we were before. We'll be back to Mayo the 7th of November and hopefully we'll be increasing some more. We're hopin to be up to 170 units by then.
Everyone is so excited for James to hear! His teachers, therapists, friends at school...we're so excited for him! I'm attaching a couple of pictures. one of them picture that shows the "microphone" piece that goes on his head (it attaches by a magnet-the piece inside his head has a magnet) and the cable connects it to his processor (which contains the programming, the volume and sensitivity). His pieces are pretty cool. Right now we're using green, but we can also switch it out to blue, white or beige. The great thing about it too is that it's waterproof! We have to use certain pieces, but that'll be fun for bathtime and swimming!

I'll try to get video up-there's one on Facebook right now.

I'm also putting up his school picture-super cute!

Back Home Again

James and I have been home since last Thursday. His Cochlear Implant surgery went very well. He did very well with the anesthesia and it seemed that he had more concerns about heart rate levels instead of breathing. His heart rate was kinda high for awhile, but not out of control. It was mainly due to pain and anxiety. They tried to hold off on giving him any narcotics because that would depress his breathing. He did very well. They kept him overnight in the hospital at St. Mary's just to keep an eye on his breathing and such. He was a trooper and by Thursday morning at 9 am they said we could go home!

Coming home he had some drainage out of his ear for a couple days which is pretty normal and also tells us that the tubes in his ears are working. He's been in a good mood, eating well and happy. He went back to school today so hopefully that goes well (I'm sure it will).

Now we just wait until October 22 when we go back to Mayo to turn on the implant!

It's Finally Here!

Monday of this week James and I headed to Rochester, MN. That boy is getting really good at traveling! I get pretty worried when it's just the two of us because if he gets hungry or upset I have to stop somewhere. But, no worries. That boy loves his movies and if we stop once to eat he's usually pretty good. Tuesday we started the day with a Speech/Pathology consult. It wasn't really anything new. We talked about how James communicates right now, what he's working on in therapy at Sanford and at school and what steps we should take after implant. She definately thinks that Augmentative Communication is the route to go with James. That route definately scares me. There are so many options out there and it's so expensive. How do we know that what we choose will work? Because once we purchase one-we're stuck with it.
The second appointment of the day was James' MRI to verify that he has an auditory nerve and to check the anatomy of his head. He went to sleep really well. It took about 2 hours. He didn't wake up as good as he usually does. He had some "laryngospasms" and it caused some mischief and they were pretty concerned about doing surgery on Wednesday considering the laryngospasms and his previous airway problems. Once I got back there he seemed to be doing well, we gave him a nebulizer and got packed up to head to the next appointment. The next appointment was kinda fun. We got to pick the colors and accessories for the implant! We chose lime green for one and blue for the other. We get a back up processor so that James is never without hearing. Then came the appointment with the surgeon. I wasn't sure what to expect. I expected the MRI to be normal but after speaking with the anesthesiologists that did the MRI I was worried they would cancel surgery. He was ok with proceeding :) We did decide to put the implant on the left side instead of the right like we originally planned, because the right side has some fluid in it right now. We would expect a better outcome with the left that has no fluid. In a few weeks we'll need to have his ears looked at to make sure his tubes are working in that right ear.

So, today I'm sitting in the waiting room. James went into the OR around 8:00 this morning and surgery should take about 2 hours. Anesthesia had a pretty clear plan about how they wanted to handle him so that makes me feel better after what happened yesterday. We aren't sure yet if he'll get discharged today or if he'll have to stay the night. Only time will tell. In the meantime, I'm praying to God for strength for James and his lungs and for all that are caring for him today.

ABR-Advanced Bio Mechanical Rehabilitation

I'm not sure what's taken me so long to write this post. I'm really excited about ABR (Advanced Bio Mechanical Rehabilitation) and I can't wait to see our hours of work on James and how it will improve his quality of life.

So, in August James, my parents, my little sister and brother and myself headed for Montreal. Long car ride! James did surprisingly well considering he hates long car rides. We watched a lot of movies (or just a few movies a lot of times) and even got a new one on the way.

We spent 3 days in Montreal. We arrived the Sunday evening before ABR training began. Monday morning my mom, Abbey, James and I headed to ABR. The morning session was more of an introduction. They spoke to us/taught us different things about Cerebral Palsy in general in addition to teaching us about the basic principles of ABR. My mom really learned a lot about Cerebral Palsy in general she said. One of the big things is that James doesn't bear weight. If you think about it, we can all just sit and be bearing weight and we don't have to consciously think about it-our body just does it. Even in a young baby-if you sit the baby on a table and give it support to keep it's head up and torso-it sits on it butt and bears weight. In kids with CP, like James that doesn't happen. If you try to sit James down-he doesn't sit on his butt and he doesn't bear weight. He falls over and leans this way and that. He almost kinda sits on his tailbone. Another concept is compressional strength and weakness. James obviously has weakness. The easiest way for us to see this was they took a picture of a healthy child-pretty young (a 2 or 3 month old maybe) and hold the child by the chest. The child keeps it's "figure" but if you do that to James his whole body collapses. His ribs collapse in and his head is bent over and his shoulders slump. Hopefully one day I'll have some pictures to show-that's easier to explain it.
In the afternoon all we had was an assessment. It was pretty thorough and they took thousands of pictures. They'll use these pictures to help assign/prescribe exercises and also to gauge improvements.
The next day, just James and I went back and we began our training. We learned 5 different exercises-1 for his chest, 1 for his upper back, 1 for his neck and 2 for his abdomen. The staff were amazing and I have such hope for this to improve James' quality of living.

On our way home we took a day to spend at Niagara Falls! How beautiful. James doesn't normally like sightseeing or hot weather but he did like Niagara Falls. I think it helped that the water/mist from the falls kept his cool. He didn't particulary like the boat ride because of the poncho's but he did pretty good the rest of the time.