Friday, April 13, 2012

The Old Brandon is Gone

Last weekend Brandon and I drove to Port Aransas for a 4 day weekend.  We met several people at the coast, stayed right on the beach and had a great restful weekend.  Driving down to Port Aransas, Brandon immediately started listening to the Beatles.  I immediately started thinking about 4 hours of Beatles driving down to the coast.  Don't get me wrong.  I love the Beatles.  But I have listened to the Beatles non-stop for years.  So, I said to the Brandon - "Brandon I want to carve-out an hour for Mommy to listen to the music she loves on the way to the coast".  Brandon started shaking his head "NO".  This went on for a few minutes and I said - "what ever happened to that sweet Brandon who would do anything his Mommy asked him to do"?  Brandon said - "THE OLD BRANDON IS GONE"!!!  Welcome to being a full blown teenager.  But also - welcome to the new, interactive, lively, Brandon.  After 17 years on the seizure medication "tegretol" Brandon is finally off the medicine.  AND everyone has noticed that Brandon is awake, interactive, funny, talkative and healthy.  It has taken 1 month to wean Brandon off the drug and increase other seizure medications to replace tegretol. 

Brandon has really had uncontrolled seizures since being released from the hospital after recovering from H1N1 two1/2  years ago.  The dosage of the tegretol medication was very high for the last year and when Brandon was admitted to the hospital last month the level was toxic.  Tegretol is also an old medication and has many side effects.  Many parents I talk to about this drug all describe their kid on tegretol as in a fog.  But what I guess I didn't understand was how much in the fog Brandon was on this drug and how much it has impacted his health the last 2 1/2 years.  Even Brandon's lungs are much better.  He is not sleeping more than most teenagers and his seizure activity is 90% better. 

So when Brandon said the the old Brandon is gone, I had to start laughing because he really is a new Brandon.  And I like the new Brandon.  Just FYI - he recanted a few minutes later and said he is still the sweet Brandon.  But the old Brandon would have slept at least two hours of the ride and the new Brandon told stories (about the Beatles) the entire time. 

A little more Brandon news.  Brandon and his network of friends (including me) are in the process of looking for the perfect person to co-parent with Brandon next school year.  As we move to the next phase of transition, I have realized that our current living situation is the perfect opportunity to prepare Brandon for living independently.  Brandon and his network have developed a plan for Brandon's future and part of that plan is for Brandon to live independently with a roommate.  So after Brandon completes this school year, we will move back to Dripping Springs temporarily.  Then in August, Brandon will  move back into the condo with a co-parent/roommate for the next school year.  Brandon will come to Dripping Springs each weekend, holidays, etc.... but otherwise he will be in school or here at the condo working on being as independent as possible.  The network is looking for that right person to be a good co-parent and move in at the condo.  Let us know if you know of anyone you could recommend us to consider. 

A little about me - I have lost 17 pounds, gained back about 5 and on the road to losing  20 more.  It has been hard, but all I have is time and motivation.  I am going to spend the rest of April focused on the next 10.  I am not traveling the rest of the month and trying to be as active as possible.  Thanks for those of you who have sent your encouragement. 

On to the new Brandon and 10 more less pounds. 
More later
Leah

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