Is it inevitable?

Today was James CTC clinic (Coordinated Treatment Center) where he sees most the providers at once. One of the good things/bad things about it is that we don't always see the same doctors. I think seeing the same one is nice because they know his history. The nice part about seeing different doctors is that we get a different point of view. They are usually pretty good about reading up on his history at CTC clinics because they know these kids have lots of things going on.

Back in December we were discharged from PT because we weren't seeing any progress. So today we actually got assessed by a PT. It sounds like we'll be going to back to PT and this we'll be going 1-2 times per week. Hopefully we'll go twice. I've been noticing how tight James' hamstrings have gotten and I'm quite concerned that he'll pop a tendon or that he's in pain. I can barely stretch him and it's always unpleasant for both of us. So hopefully a more aggressive approach to PT will help with those hamstrings.

We got to skip seeing Speech and OT since we see them weekly.

We saw a new physiatrist (physical medicine/rehab) doctor today. I liked him a lot. He was pretty happy with James and his new AFOs (we got them last Friday). We are going to head down to Healthcare Accessories and get his wheelchair assessed and see if we can adjust it for some growth and hopefully at the same time we find a way to keep his hips in the chair where they need to be. He tends to push his hips out resulting in his whole body slumping down in his chair = not good. We're also going to try and do some botox in James' hamstrings and see if that helps his extreme tightness there.

We chatted with the social worker a bit and saw the Pediatrician. We saw a new one today and liked her lots. She was pretty happy with James and helped facilitate some communication with the audiology department to get things moving on the cochlear implant front.

Dietician.....my least favorite. Wouldn't you know little James lost a few pounds again :( Losing weight isn't really an option for James and of course they discussed a G-Tube again. They are giving us another goal-by his 5th birthday (April 2013) the goal is 30 pounds-and stay there. We'll see how that goes but I feel like we've had this conversation over and over for the past 2 1/2 years. We are constantly worrying about James' weight. I get pretty anxious when it comes to weighing James and most the time I don't really want to know. I had thought we'd been doing pretty good and here we'd lost 2-3 pounds.

Overall I guess not a bad day. We've had worse. Although if you were to ask little Elliot he probably would've told you that he was bored and couldn't wait to get out there. He sure is a trooper going with to appts all the time. For the most part he behaves and plays pretty good. But as you would expect from a 2 year old boy, he gets pretty bored being cooped up in waiting rooms.

Just a reminder that you can order Pizza Corner Pizzas and Butter Braids through July 20 and they should be here August 2nd. We'd like the money right away if possible. Thanks again everyone for your support!

Looking for Something More

In the past few months I've been researching a new therapy called Advanced Bio Mechanical Rehabilitation (ABR). I found ABR through another Special mom's blog and have been enamored with it. I've only found good things about it. Unfortunately, it's still in the research stages and insurance won't cover the cost. The other unfortunate thing is that we have to travel to Montreal to be trained.

The following is from http://www.blyum.com/

• ABR stands for Advanced BioMechanical Rehabilitation.
• ABR is a unique biomechanically based rehabilitation approach for children and young adults with brain injury that brings predictable recovery of musculoskeletal structure and motor functions.

ABR is the method of structural correction of musculoskeletal deformities. It is a hands-on method performed by the parents who learn the ABR technique and receive individual prescription of applications from the ABR professional staff.

• ABR is a method that re-builds even the most severely distorted musculoskeletal structure
• ABR redefines "rehabilitation" – ABR improves musculoskeletal structure so significantly that normal motor functions recover spontaneously, making special training and management for "motor disabled" unnecessary.

We use no pharmaceuticals, no electrical instruments and no surgeries - ABR is a hands-on method of manual applications to the child's body, based purely on biomechanical principles.

ABR biomechanical reconstruction of the musculoskeletal system follows the path of normal motor development - starting from the neck and trunk and later descending to the periphery (arms and legs).

ABR provides planned progress of the musculoskeletal structure and function through predictable stages. Results are predicted in numbers of hours of exercises done and changes in the alignment, mobility, size, tone and strength of the child's body – specifically in the chest, abdomen and the pelvis.

ABR is more than just a new rehabilitation method; ABR is a comprehensive philosophy of the child's recovery. The cornerstones of the ABR philosophy are fundamental biomechanical principles of the human body's growth and development. Respectively ABR takes bio-electrical and bio-chemical factors into account only through their biomechanical manifestations.

This biomechanical approach allows us to have exact guidance for every single movement. Every single ABR application to a child's body is precisely calculated and adjusted for each individual patient.

ABR opens a new dimension in the treatment of the mildest to the most severe motor dysfunctions in the sense that it gradually brings changes to the mechanical and electrical structure of the muscles, thus allowing spontaneous developments of motor function.



We've gotten our pre-assessment back from ABR in Canada and we are ready to go learn but first we have to come up with the $. The cost for the first year (4 visits to Montreal) is $7700. We are currently selling Butter Braids and Pizza Corner Pizzas to help pay for this therapy and the cost of travel to either Minneapolis or Rochester for James to get cochlear implants. If you'd like to buy a butter braid or Pizza Corner please Facebook me, email me at ajbuettner@hotmail.com or simply give me a call! Every little bit helps!

For more information on ABR you can visit http://www.blyum.com/ or http://www.abrcanada.com/

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.