Brandon Update

Well it has been one medical thang after another the past few months and the kind I really hate.  The wait and see kind.  I think I wrote earlier that Brandon had a nodule in his lungs.  For a month Brandon has had 3 nebulizer treatments a day followed by CPT (chest physiotherapy).  The specialist believed it was a mucus plug.  So I told Brandon we needed to get aggressive to "unplug" the nodule.  After another xray, we received confirmation that Brandon's chest had cleared.  He still does not sound great at night and we are still using the nebulizer for night treatments but he is great during the day. 

While in the middle of trying to clear Brandon's lung, Brandon flunked his quarterly EKG.  I tried to ignore it for a few weeks but it came back in full force with some urgency to see a heart specialist.  In the meantime, a heart specialist reviewed the EKG and stated that Brandon may have right ventricular hypertrophy.  I looked this up and it doesn't sound good and can be related to his lungs.  So we were still nebulizing while I called around about the heart thang which could be related to the lung thang.  I haven't mentioned this but Brandon had an impacted bowel this summer and he has not 100% recovered from the damage.  So we are also dealing with this and I wont go into details.  But I may need to have a plumber on retainer.  So while dealing with the heart thang, the lung thang and the bowel thang Brandon starts having seizures.  They have been going on for several months on and off, but I have not noticed it much in comparison to everything else until the last two weeks when he collapsed at school and then could not walk.  They have started to happen everyday.  At first I wasn't sure if Brandon was trying to get out of class but I cant deny the symptoms which are hard to make up and Brandon swears on his Beatle Bible that he is telling the truth. 

So the good news, Brandon's cardiologist reviewed the EKG against our last visit and believes we are fine.  Yea.  The lung nodule is gone - yea.  The bowel thang continues but is manageable.  But the seizures seem to be indicating that Brandon's current medication of tegretol is not fully working now that he is a teenager and I am discussing new medications with Brandon's neurologist for Brandon to add.  Scary.  We have been so blessed for almost 17 years with very few seizures.  They have been mostly controlled except when Brandon grows quickly or he is very sick and there is a breakthrough seizure.  When Brandon was 2 he was on phenobarbital.  It stopped working and we tried to ween him off that medicine onto tegretol.  It did not go well and we ended up in the hospital to make the change of medication.  I am hoping this will be smoother.  I really feel bad for Brandon having to go through these bad seizures while we try to find the right formula.  He is a real trooper.  So we are really hoping for all of this to get cleared up and no more new things to deal with each day.  Brandon of course is just looking forward to his birthday and Christmas and asking Santa for all things Beatles. 

In the meantime I am in full force learning SSI and power of attorney getting ready to apply and complete on Brandon 18th birthday in December.  More on this coming up. 
Leah

Brandon in the news

Brandon was interviewed at News 8 Austin about his films and the upcoming film festival.  http://www.news8austin.com/content/entertainment/movies_and_film/274642/film-festival-spotlights-disability-in-cinema

CTD Film Festival - Cinema Touching Disability

2007 Cinema Touching Disability Film Festival

I've been a little busy the last two weeks and have not updated everyone on Brandon's exciting week.  The Coalition of Texans with Disabilities is having their film festival this week.  This is their third festival.  It is really a great event and I hope everyone comes out to support.  Here is a link to their website.  http://www.ctdfilmfest.org/schedule.html.  This really of an example of "it takes a community".  In 2008, Brandon submitted a film he made during a summer camp he attended.  It was the year of just calling any camp that may interest Brandon and see if they would accommodate his special needs.  To my surprise the "Stunt Ranch" Camp said their would accept Brandon in their summer camp that teaches kids to make movies and to do stunts.  Well Brandon was not interested in the stunts, but he is great at computers, loves music, loves movies and was motivated.  The staff was really great and along with Brandon's aide Kristin Brandon made a great sensitive film about the Beatles.  He typed the words on this device, picked out the music and their even had him carry around the camera.  The group edited it and it was a big hit on the last day of camp.  You can see a link to it on this site. The video is titled "Beatlerama".  One of the camp's counselors suggested that we enter it in the Cinema Touching Disability Film Festival.  I had no idea how to do this, but followed the instructions, Brandon and I had the video copied and we submitted it.  It was not too much longer that Brandon was told he was one of the winners in the young adult competition.  We went to the film festival and he won second place, received an award, got up in front of the audience and accepted it.  It was really a great evening.  I was so proud of Brandon. 

Well move to 2010 and Brandon worked for CTD this summer in his internship program through goodwill and he made another video about the 20th anniversary of the ADA.  He had a great time working at the office and making the video. 

So here comes "the Community".  CTD asked to play Brandon's Beatlerama video on their opening night at Goodwill and also play the 20th Anniversary of the ADA video.  Brandon is thrilled and will be there as one proud film maker.  Tomorrow he will interview with Channel 8 news and may possibly be in the news. 

So this is a big week for Brandon.  He is sooo excited and I am sooo proud.  It really does take a community ........

Leah

Patrick off to Afghanistan

On Wednesday, Brandon's brother Patrick is leaving for his first tour in Afghanistan.  A little scary for Brandon, for me and his mom.  We are so proud of Patrick for all that he does.  He is a great dad, a great son, a great brother, a great friend and a proud soldier who loves his job and protecting his country. 

Patrick was 12 when Brandon was born and was sooo excited to have a younger brother.  He could not wait until the news of Brandon's birth.  He rushed to the hospital about 30 minutes after I delivered and wanted to see for himself.  At the time we were not aware there were any issues with Brandon's health.  He was very concerned as we all waited for over a month as Brandon stayed in the ICU.  When Brandon came home Patrick was not concerned with all the machines, medicines, and how fragile he was.  He was just so glad to have his brother home.  For the next year Patrick lived with us and was a key reason Brandon survived his first year.  He was there for every major event, holding Brandon, playing with Brandon and taking care of him. 

After my divorce from Patrick's dad, Patrick still wanted to be very involved with Brandon.  Patrick's mom and I worked together to make sure that Patrick and Brandon were able to spend quality time together.  Patrick would come at summers, holidays, occasional weekends until he was done with High School.  Shortly after High School and some college, Patrick decided he wanted to join the Air Force.  This was before 9/11.  The Air Force and Patrick were a great match and he has continued ever since.  We still continue to see and talk to Patrick on a regular basis.

Patrick and Brandon have a very special bond.  Really he is one of the few people who really "get" Brandon and Brandon knows it.  He can make Brandon laugh.  He can carry a conversation with him and Brandon still wants to cuddle with Patrick even at 17.  Brandon loves his brother.  When Brandon was 4 years old he had not started walking.  Patrick was coming to spend some of the summer with me and Brandon and I was dreading telling Patrick that I had ordered a wheelchair for Brandon.  When I did, Patrick cried and said that by the time he left for the summer he was going to make sure Brandon walked.  He did not want Brandon to permanently need the wheelchair.  I told him to go for it, not knowing how that would end, but totally supporting his efforts.  At the time we had a long hall in the house with carpet all the way down the hall.  Patrick walked with Brandon all day and into the night every day for the entire summer.  About halfway through the summer Brandon began taking steps.  That was a real motivator and Patrick continued.  By the end of the summer Patrick had Brandon in the front yard walking about 50 steps at a time.  SUCCESS.  Everyone was so proud of Patrick and to this day we have barely used that wheelchair.  It now has a new owner. 

Brandon was there at the hospital when Brandon had his two surgeries and at Dell when Brandon had H1N1.  He just wanted to see for himself that Brandon would be alright.  I could go on and on about other stories of Patrick and Brandon because there are some many other times Patrick has made a difference in Brandon's life.  But I will spare everyone. 

Patrick now has a son of his own and a nephew for Brandon.  His name is Landon.  Patrick is as dedicated to Landon as he is (and more) to Brandon.  We all love Patrick and Landon at this house. 

So Patrick you will be very missed by Brandon and me.  You are key member of our family.  Please take care of yourself, come home to all those who love you and know we are proud of you. 

Love leah and Brandon
(picutres in blog)