Brandon's video from Internship with the Coalition of Texans with Disabilities

The Coalition of Texans with Disabilities sent out a newsletter today stating "Anywhere, any day:
Rock out with CTD! To commemorate the 20th anniversary of the ADA, CTD's summer intern, Brandon Rummel, created this rock video! Set to Bob Seger's "Feel Like a Number" and the Beatles' "Birthday," the video pans through 20 years of CTD photos. Click here to check out Brandon's fine work!" 

During Brandon's internship at CTD Brandon worked on a video celebrating the 20th anniversary of the ADA for CTD.  The link will take you to Brandon's rockin' video.  Great job Brandon and CTD.  I love the video.  http://www.youtube.com/watch?v=3QkomtfW7lE
Leah

Texas Children's Hopsital Rocks Once Again

Over the years I have taken Brandon to Texas Children's Hospital for various treatments, mainly because the services have not been available in Austin or the expertise is so much more in Houston.  Brandon saw his first pulmonologist in Houston when there was no pulmonologist in Austin.  I truly believe the pulmonologist in Houston saved Brandon's life after a series of life threatening pneumonia's and long hospital stays when he was very young.  The Houston pulmonologist simply developed a plan for Brandon to begin to clear his scarred lungs and to begin to recover from several years of infections.  The treatment and medication was simple once implemented and Brandon has not been hospitalized from pneumonia (except the H1N1) since around 5.  I also took Brandon to Texas Children's to have them develop a plan to help Brandon eat foods through the mouth safely and to improve his swallow.  I video taped the sessions, brought them back for the school, the therapists and the doctors that treat him here.  At age 4-5 Brandon did not eat anything through his mouth and today Brandon takes 100% of food and medication though the mouth, except when he is ill.  I also discussed having a surgery to reduce the amount of saliva, but ultimately decided the risks were too great.  The surgeon in Houston does 100's a year and the surgeon in Austin did about 2 a year.  It really makes a difference. 

I have not been back with Brandon in a while to Texas Children's mainly because of all the visits to Scottish Rite.  Originally, I had planned on having Brandon's surgery for his foot at Texas Children's but the doctor we were scheduled to see ended up taking a temporary position out of the country for 6 months and we decided to go with Scottish Rite. 

Today I remembered why I love going there so much.  Brandon went to the Genetic Clinic within their specialty care center.  The physicians there are associated with the Baylor College of Medicine.  I wanted to specifically see Dr. Bacino (http://www.bcm.edu/genetics/index.cfm?pmid=10580).  Brandon had some tests done previously and they had all the tests from other clinics already at the office.  The visit was to go over all the previous tests, discuss Brandon's condition and determine if we missed anything, needed to repeat anything and if there is nothing else at this time.  Dr. Bacino agreed that Brandon's condition really does not appear to be cerebral palsy and that we have probably not found his diagnosis. 


We decided to go to the next round of tests.  He also videotapes each patient for physician discussions they have each day.  All the physicians will review the tests, Brandon on video to see if they have any other tests they believe should be performed.  He also told us to not give up on him (Dr Bacino) that this was the first series and he wants to run a few others.  Really nice guy and great team with him.  I really believe when we get done with all of the tests we will either find a diagnosis or I can at least feel like I tried my best. 


Only one bad moment for the day.  They wanted a urine sample and Brandon has never been able to give one at a facility.  What I feared was, we would be there all day waiting.  Sure enough we were.  I finally asked if we could get the orders for the urine tests and take them back to Austin.  They agreed.  The appointment was at 9:30 and we left at 3:00.  But I was so relieved that someone is really trying to help that I didn't care.  Brandon was soo relieved we were not going to stay there any longer. 


I really wanted to try to do this analysis before Brandon turns 18, because after 18 Brandon is considered an adult.  The adult physician world is not as great as the pediatric world.  I am not even sure who will be his primary physician and I will probably be traveling out of town more often because very few specialists in Austin take kids transitioning with special needs.  A few of Brandon's physicians have agreed to continue to treat Brandon, but most will not longer treat him after 18.  Even Dell Children's has an age limit of 16.  However, if you show up at the ER they will not turn you away.  Anyway, I just wanted to let everyone know how it went but to support physicians doing it the right way for kids.  Tests should be back in a few weeks and then we go back to review and determine if more are needed.  More later.


Leah

Success on the Job

Brandon, Ross (Brandon's aide) and staff at The Coalition of Texans with Disabilities

Brandon's has completed his 5 weeks working through the Goodwill Training Program and his assignment to the Coalition of Texans with Disabilities.  If you read previous posts the first day was a little rough.  Brandon had to understand the concept of work and how important it will be in the future.  Brandon could not have a better assignment for his first job.  He had very supportive staff who understand his special needs, the difficulty of a first job and the needed encouragement to show Brandon he really can succeed.  Brandon's main project while he was working was to produce a video about the 20th anniversary of the ADA.  A great learning topic for Brandon.  Brandon had to learn to scan pictures, find music for the video (that was easy), type information into his communication device, type e-mails, present his progress at staff meetings, type interview questions for people he interviewed into his device, interview people and produce the video.  The great thing he learned is that people have a hard time understanding him when he talks and it is really important to use his device even though he doesn't like using it.  That will be very important for the future. 

Brandon worked 5 weeks.  For him that was a lifetime, but he really began to enjoy going to work.  He earned $7.25 per hour and a bonus for working on some career projects for Goodwill.  We received information two days before the program ended that Brandon could continue through September with Goodwill, but he already had plans for the rest of the summer and I decided 5 weeks was a good start of a working future for him.  I asked Brandon what was the reason for success in this job and he said work hard.  Brandon also learned a great deal of independence in this job that hopefully will continue in his next experiences.  We will definitely do the Goodwill training next year after he graduates from High School and moves into the 19+ program.  Just a little baby step to independence. 

More medical updates -
During the process of determining treatment for Brandon's cavernous foot at Scottish Rite, the physicians at the hospital believed that Brandon's medical diagnosis of cerebral palsy was not correct.  We had many, many tests for almost two years trying to determine a cause of the condition.  At the end of the tests performed at Scottish Rite they referred us for genetic testing at Baylor in Dallas.  We began testing in Dallas and continued testing in Austin with genetic testing and biochemical genetic testing.  Some of the tests came back positive or inconclusive.  A diagnosis of cerebral palsy indicates a "static condition" that does not get worse.  Once the onset of cerebral after the event causing cerebral palsy the condition does not get worse.  But the physician's at Scottish Rite believe the foot condition is related to a progressive condition and will get worse, including multiple surgeries on both feet to allow Brandon to walk.  I stopped pursuing a diagnosis after Brandon's second surgery and his bout with H1N1.  We just did not have the time to devote to the testing and the research involved in many of these conditions.  Most conditions that have been indicated are very rare and have resulted in many hours of research and e-mails and list serves.  It can be exhausting.  One of Brandon's abnormalities is a genetic deletion of a series of genes called 7q.36.3.  Believe me, I never knew there was so much information on such a rare defect.  There is actually a researcher in Canada that does nothing but research 7q genes.  Each unique condition usually has some kind of research in some area of the world.  If you are into this kind of thing it is pretty fascinating.  Anyway, I finally decided that before Brandon turns 18 I wanted to complete the testing on Brandon to determine if there is a known diagnosis at this point.  I am very aware that there may not be a diagnosis and his condition may remain unknown and still titled "cerebral palsy", but I have to say that I tried.  So next week we travel to Houston to the Genetic Clinic at Texas Children's to have them review all the records, run any additional tests and try to finalize everything that is known at this time.  The clinic is very advanced and is known for their latest research. 

More news -
Brandon has a new puppy "Dizzy Ms Lizzy".  She is a chocolate lab, very sweet, a people person and is 7 weeks old.  In fact he is lying right on top of my feet as I tyoe this post.  I will post a picture of them soon.  Brandon has some medical issues (nothing too serious) right now so he is laying low this weekend to recover before he begins his camp next week.  Lizzy slept on Brandon's lap on the way home from Waco where we picked him up from Peggy (Patrick's mom).  Thanks Peggy for making this happen. 

Also, on the last note of concern - Patrick, Brandon's brother just heard he will be deployed to Afghanistan early Sept.  Brandon is of course very concerned.  However, we are all very proud of Patrick and his service to this country.  He can look forward to many care packages from us in the future.  I found out how to send and already have some volunteers to help gather items.

More later.
Leah