Friday, August 14, 2009

research, research, research

After coming home from the CHARGE conference, I have been very busy researching and exploring new therapies, educational approaches, organizations, and evaluations.

Here are a few of the highlights in progress:

I am working with our county's health department to organize a care conference for all our local providers...therapists, medical personnel, advocacy organizations (WSDS, HSDC - deaf/blind advocates) and the education team. There are approximately 15 people and it is important (imperative actually) that we get more coordinated and understanding of each group's goals for Maxwell. Additionally, I want to share information from the conference and the research on behavior issues and educational strategies.

I have lined up Maxwell with just about every specialist he has at Children's. It seems about every six months we are living at Children's for a it's that time of year again. So in addition to his regular "check in" appointments, we also are meeting to discuss some new issues including higher than normal carbon dioxide levels, growth hormone treatment, brain structure, and vision change.

After his sleep study, it was determined he does need his tonsils and adenoids removed to help with his sleep apnea. If that doesn't make a significant difference, we may need to try the CPAP machine at night. This surgery will probably happen this fall, but we are still coordinating different specialists.

(Max is watching Signing Times as I write this post. He just spotted a quarter on the floor, picked it up and put it on top of the TV. What a good helper!)

Max will have various procedures done at the same time of the T&A surgery to minimize anesthesia exposure.
  • ENT will evaluate the status of his choanal atresia (his nasal passages).
  • Another ENT will reconstruct part of his right ear. This first stage of the reconstruction is to help form a more "hearing aid friendly" ear.
  • We are working to get some MRIs/brain scans done to evaluate his brain structure, semi-circular ear canals and the existence of the olfactory bulbs. (more on those issues later)

After learning more at the conference and talking with some families, I am considering an evaluation for Maxwell at Perkins School for the Blind in Massachusetts. They are the experts on CHARGE Syndrome and have helped many families truly understand their CHARGE child and give extremely valuable input on educational approaches and behavior strategies. Their team of experts will meet with Maxwell for several days and prepare a comprehensive report for us to share with our local educational and therapy providers.

I am also exploring Handle, an alternative and non-drug approach for neurodevelopmental disorders and includes research and techniques from various disciplines. The expert comes to us, performs an initial evaluation and comes up a plan to assist with learning and behavior. This approach has been very successful with a few CHARGE families. The expert follows the individual's progress, is available for consult, and returns several more times for follow up work.


Kurby Family said...

Wow, you have been very busy...and sounds like that won't be ending anytime soon. You are an awesome mom, very on top of your game (and Max's). I will be interested to hear how everything works out, and I hope the surgeries go really well.

Tommy's mommy said...

Impressed by both you and Max. I want to know what calendaring system you use. Seriously, it's been my hang up lately. Between, my work appts, Tommy's appts, taxiing teens here and there.... I'm lost between three different calendars. Suggestions?

I'm very interested to know about the CARE conference and the Perkins eval.

You are one amazing momma with a really handsome son. Now.... when is the next mom's night out, we both need it :)

Carolyn said...

Incredible Amy, you are always on top of everything for Max. All your research is paying off and we can see it through Max. Mighty Max and Incredible Mommy are a TEAM.
Love you both,
Carolyn in WV

Eva Nichole said...

WOW that is great, so does that mean you will go to Perkins for the eval? I guess I just have a hard time figuring out how all that works and how to get there.
Good luck with all,
Crystal and Eva

Schnaderbeck Family said...

If you come to Perkins, let us know! We'll make sure you have some fun in the City. Ok, we're lame, we'd probably just invite you out to the suburbs. :)
Not to rain on your parade (it's all about being informed), Alexis had her tonsils out as our hopeful attempt to get her off her CPAP. Nope, she still needs it. She sleeps every night with her CPAP and wakes up so well rested. Her pressures were just increased (boo boo). Keep us posted on all of your activities, I'm exhausted reading about them. :)

Jen said...

Whatever you choose Max will thrive! Look at him!

Amélie said...

Max looks great love the trike bike pics and a very busy schedule Amy and all methodologically thought out, our tonsils adenoids didnt improve the apnoea and her sleep study desats were so profound (BIPAP and CPAP Amélie wouldnt tolerate), and so we ended up trached...a long debate but no regrets, hope the tonsils do the trick its obviously the least invasive so good luck x

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