Thursday, December 13, 2007

Dysautonomia Health Updates



Health update:

Since moving to Atlanta I have had the opportunity to see several doctors and have had many tests run.  God has blessed me with some wonderful, caring, and intelligent doctors who have all been willing to help me in any way they can.  I am thrilled with my primary care physician, my POTS doctor (an internal med physician), and my sleep specialist.  I couldn’t have asked for a better team of local doctors.  I have also had the opportunity to see an electrophysiologist and a rheumatologist. 

In my time here we have had numerous tests run including an MRI, an echocardiogram (ultrasound of my heart), a sleep study, and more blood work than I can remember.  Because my health has become dramatically worse in the past 4 years, we have been checking to see if I might have something other than dysautonomia.  So far nothing else has been found. 

We are at the end of the road as far as tests and treatment go here in Atlanta.  My doctors have been telling me for quite some time now that I need to see the specialists.  It is time to go see “the best of the best.”  In December I will be going to Toledo, Ohio to see Dr. Grubb.  He is one of the leading researchers in autonomic dysfunction.  All he does is research and treat people like me!  Dr. Grubb comes highly recommended by physicians as well as patients.  This will be a long trip (2 day drive both ways, plus 2 days in Toledo), but we are hopeful that it will be worth our time and money.  My parents are going to take care of William so that we can make the week long trek to and from Dr. Grubb.  When I get back I will give a report about what Dr. Grubb said and what we learned.

There haven’t been any overall improvements in my health since going to doctors here in Atlanta.  However, we have been able to stabilize my condition somewhat with a good med combo.  It is a fight to get my insurance to cover all of these medicines, but we’ve had a little bit of success.  My insurance still won’t cover Provigil, though, so I’m drinking coffee instead.  Woohoo!  I love an excuse to drink coffee!
  
Regular Life Update:

As William is growing up, it is becoming easier for me to take care of him.  He is even learning to be helpful now!  He has one chore: throwing away his dirty diaper.  After I change him, it is his responsibility to carry his diaper to the kitchen trash can.  This saves me some steps, and teaches William some responsibility!

William likes anything with animals, and can distinctly make about 40 different animal noises.  He has cards with random animal pictures (everything from a ladybug to a caracal).  One of his favorite things to do with me is lay all of his cards out on the floor for a quiz.  I then ask him to point to a particular animal - he gets it right every time!  He has an amazing memory. 

William’s most recent trick is a summersault.  He has discovered that he can do these all by himself now and is quite proud of that fact.  He cheers for himself every time he completes a summersault.

Will is working at a Publix deli down the road while we wait for a permanent ministry opportunity.  He is enjoying his job at Publix, especially the people he works with. 

Lately I have been busy trying to get my website up and running.  When I get caught up with my website I hope to work on William’s scrapbook again.  So far I am only to Christmas of 2005.  I’m almost two years behind! 

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