Tuesday, August 28, 2012

Surgery is Set!

A few weeks ago James and I went to Mayo Clinic in Rochester to have him evaluated for cochlear implants. The first day we met with 2 Audiologists from the cochlear implant team. We did a lot of talking and discussing. We talked about James medical and hearing history, how he does now with hearing, what cochlear implants do, what we could expect from a cochlear implant and on and on. They also did some testing with James. The testing was somewhat similar to what he's always had done but a little different. Instead of putting him in a soundbooth along and watching for his reaction they had one person in the control room and one person in the soundbooth with him. That way they could watch his eyes and movements more closely to get a more accurate read on what levels and frequencies he can hear.
After doing the testing and reviewing the Auditory Brain Response testing we did in Fargo, they agree with the diagnosis of Auditory Neuropathy Spectrum Disorder. They took a look as his ABR that was done in Marshfield the first 2 times before he got hearing aides and it appears he's had Auditory Neuropathy all along. This upset me quite a bit. As they explained to me how to read and audiogram and ABR it was quite clear to me that he's always had Auditory Neuropathy. I felt like we've lost all these years doing something that hasn't helped him at all. I realize that had we known this years ago it doesn't mean James would be speaking, but I do think he'd have much better listening skills and his communication could be in a better place than it is right now.

But I can't dwell on that and I have to move on. And so we are. We had a second appointment with the cochlear implant team Audiologists and they gave us some insight into what we could realistically expect from James with a cochlear implant and what kind of follow-up and therapy he'll have to do. They also reviewed the different types of devices. There are 3 devices, all pretty similar. We chose one that can be worn off the ear and is also waterproof and can be worn swimming and in the bathtub.

Lastly we saw the surgeon. That was a pretty quick and painless visit. James will have an MRI the day before surgery and if he has an auditory nerve, the cochlear implant is a go the next day.

October 2nd at 11am will be the MRI and October 3rd will be surgery! We can't wait!

Family Vacation

For Christmas 2012 my parents were generous enough to get us all Twins tickets! So off to Minneapolis we went. The first day we left Fargo midday and did a little shopping in Albertville with my family. While we were there I finally bought James some tennis shoes to fit over his new AFOs. James hasn't had shoes in a couple of years because his AFOs have had grippers on the bottom-he didn't really need shoes. As winter time came this past year I realized that we were outside more getting on and off the bus and the poor kid had just socks and AFOs on! For the winter we used a blanket to cover his little toes but this coming year he'll have shoes!! Shopping for shoes to fit over his AFOs was interesting. I found the easiest way to do it was to try shoes that tied instead of velcro-I just found it easier to make the shoe as wide as a could. We had the lady at the shoe store measure his AFO and then we tried Wide shoes with shoelaces. First I loosened the shoe up and fit the AFO in. Once I knew I could fit the AFO in I tried to the shoe on while James was wearing the AFO. Definately a learning experience. On the easier end of shoe shopping, Elliot got himself some Spiderman shoes. Man does that kid like Spiderman! He was pretty excited.



That night we just hung out by the pool and ate supper as one big family in our parent's hotel room. The pool was pretty awesome for kids. The kiddie pool was a walk in pool that was heated with a pretty neat slide. The kids all loved it! James and Elliot even went swimming in the big pool with mom and dad and had a blast. James loves swimming! I've been meaning to get him into lessons-we just haven't had much free time! Elliot thought swimming was great and kept saying "kick kick kick paddle paddle paddle" He even started repeating that as we watched swimming in the Olympics this past week!

The second day we headed to the Mall of America. We did a lot of walking and a little shopping. The kids' favorite part was the Disney store. Elliot is all about the Marvel comic guys right now and we couldn't get pas the first part of the store without stopping to look at Spiderman, Iron Man, Hulk and Captain America. Of course later in the store we got to see Mickey Mouse stuff which made James' day. The kids got so tired they took nap in their strollers.

After the Mall of America we headed to Target Field to see the Twins play. James loved it! Elliot liked it when he sat still long enough to watch. To no surprise the Twins lost, but it was a pretty good game. They tried to make a come back at the end, to no avail.

Wednesday we took the kids to the Como Zoo. It was pretty good and free! The kids love looking/seeing animals, Especially James. It's fun to watch Elliot see them all too since he's learning the names and sounds that go with each animal.

All in all it was a good trip. Short and not far from home, but still good.

Sunday, August 5, 2012

Short Notice

I got a bit of a short notice on some appointments. Mayo Clinic called Thursday afternoon to let us know they could get us appointments on Monday, Tuesday, and Wednesday. Wow....Of course I was so excited. I couldn't believe we finally had appointments but with only a couple days notice I wasn't sure it was really going to happen. First order of business was to get off of work....Sue and Marie at work performed a miracle for me and I got off work! Thanks a million to the people who are working night shifts for me! After getting off work I figured it would all be easy from there. We got a hotel room booked, we got the appointments confirmed, I made phone calls to our insurance to inform them of appointment dates. Lastly I arranged for Elliot to go visit Grandma and Grandpa Kitchens for the week. Auntie Abbey will watch him during the day. This was a huge load off my shoulders. It can be pretty hard to focus on James and the doctors when I have Elliot at appointments. He's not usually a bad kid, he's just busy and explores everything he can in the doctor's office. It can be a bit distracting. I'm a little sad that I won't see him for so long. He's never been away from us more than a couple of days (and that was pretty recent). He'll head to Grandma's tomorrow and we'll get him back on Saturday when we all head to Minot to my cousin's wedding.
So I guess James and I are heading to Rochester, MN to the Mayo Clinic on Monday. We'll have only one appointment each day but I think they'll each last a couple of hours. I'm not exactly sure what each of the appointments really are or what we're doing. I'm not sure if it's just talking about James or if it's testing of some sort that we haven't done here in Fargo. Wednesday we'll head back home so I can get back to work.

We recently took a trip to Minneapolis to see the Twins play. James loved the game! I'll post more details and pictures soon (hopefully while we are in Rochester since I may actually have some free time!). I'll also give everyone an update on our fundraising!