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!

Cochlear Implants

We finally heard from our Audiologist's office this past week. They've been in contact with Mayo Clinic in Rochester and sent them all James' information and are currently reviewing the file. They'll hopefully be calling the next couple of days to set up evaluation appointments. They were able to tell us that it'll be a couple day's worth of appointments. Yikes! Andy doesn't get too much PTO at his job so I hate to have him take 2 days off for evaluation appointments when we know in the future that there will be surgery in Rochester. So hopefully (if timing works out) my fabulous friend Heather will accompany me and my boistrous boys to Rochester.
I'm not really sure what the appointments all entail or what they're going to do with James for 2 days. I thought we'd pretty much done all the testing that had to be done here in Fargo, but I guess not :S

James had a pretty busy day this past Wednesday. He went to school in the morning and right after school we headed over to Sanford for his outpatient feeding and language therapy. After therapy we headed down to Healthcare Accessories to get James wheelchair looked it. We were concerned because we can't keep his hips back in the chair. Then he ends up sitting in the pelvic tilt (he doesn't mind at all) but it's not good for his posture and developing trunk strength. They were able to added a piece of foam under his thighs and hopefully that helps. They also did a little growth adjustment. While we were at Healthcare Accessories we had James AFOs adjusted. They were leaving nasty red marks on the tendon behind his knee. He also got his new hand/wrist splints. James tends to put his hand in a closed fist with his thumb between his pointer finger and middle finger. Not a good thing. So these will help keep his hand open and his thumb out.

In other family updates:

Andy is still playing ball a couple nights a week. My cousin's daughter has been watching the boys for us! It's been fabulous and I'm sure a big learning experience for Tracy.
Andy and I were able to slip away for a day and leave the kids with my parent's for a weekend. We ran the Warrior Dash with a couple of my friends in Hastings, MN. Wow was that hard! it was an extreme 5K with obstacles. The obstacles were pretty fun but there were tons of hills to run up.
I'm still busy busy busy at work and taking kids to appointments and scheduling our lives!

Elliot....what can I say. He's two. He's a boy. Wow! He's super busy and definately destructive. He gets into everything. EVERYTHING! We think we have everything out of reach and locked up and he somehow finds more stuff or finds a way around it. Most recently he somehow got the container of Nesquick strawberry powder (we add it to milk for Elliot so he doesn't drink all James' Pediasure) and dumped the WHOLE thing onto the carpet......

I've added a few pictures :)

Andy and I after running the Warrior Dash

James watching fireworks!

got a new movie....with talking animals

wearing mommy or daddy's Warrior Dash helmet!

another Elliot mess

He was so excited to cilmb on there!

Fun day at the park

Now that James has new AFOs we got him back up in his stander!

Back to Where We Started

This past Wednesday James had a routine ABR done. An ABR is an Auditory Brain Response test done for hearing. They're able to record the brain's response to sound. James had one or two of these done when he was initially diagnosed with hearing loss. The new audiologist here in Fargo thought it would be a good idea to have one done now because we're in a new place and it's been awhile since we've done one. I wasn't expecting much from it, just for them to say he has a mild-moderate hearing loss-what we've thought all along. Boy was I wrong. I guess you could actually say I was devastated by the results. Here we've using James' hearing aids religiously and thinking that he hears us when we talk to him, but he doesn't. Or he might. We just don't know. The testing of his ear was pretty normal. His ear works the way it should, but the brain resonded to nothing. Nothing. That is far from what I thought. They think he might actually have Auditory Neuropathy which is a term we heard when we first started working through James' hearing problems in November 2008. I talked about it a little bit on James Caringbridge site and since they diagnosed him with a hearing loss and then fitted him with hearing aids I haven't thought much of it. So Auditory Neuropathy...essentially James' ears work fine but the sounds doesn't make it to his brain or it gets jumbled and doesn't know what to do with it. There are definately times when we're positive James has heard us...but that would fit with this diagnosis as well...his brain at times may actually make the connections it needs to and he hears fine. They're strongly reccommending James get cochlear implants. I'm waiting for a call from the audiologist. They wanted to go over James' previous hearing tests and chat about it. Our options for cochlear implants are University of Minnesota and Mayo in Rochester. We'll wait to hear what they reccommend and go from there (and see if insurance makes us go to Sioux Falls).

I feel like we've lost the past 3 years in terms of James' hearing. Could he talk by now if we picked this up sooner? Would he still be nonverbal because of his Cerebral Palsy? Is he nonverbal because of his Cerebral Palsy or because he can't hear? I guess all we can do from here on out is start fresh and focus hard on getting his implants and his speech therapy after.