This week I am am not feeling like the mom of the year. This is because of Brandon's medical transition from age 20 to now at age 21. I knew there were going to be some hiccups, some loss of medical professionals who have seen Brandon almost since birth, some changes in his benefits. I didn't realize they would all hit at once. I was so relieved, excited and proud that Brandon has turned 21. In the last 21 years Brandon has had great medical care and have received help for our family and caregivers to assure we all know how to handle Brandon's medical conditions. Without all this great care Brandon would have had many more struggles. I want to make sure all my friends with loved ones headed to age 21 are aware and are prepared before their young adult turns 21.
Last month Brandon did not receive his normal order of Pediasure paid for by Medicaid. Brandon has been on some form of medical formula since birth. It is what maintains his weight. Since birth, my dream for Brandon was for him to eat food just like all the other kids, through the mouth. I wanted to take him off any type of formula. It was a struggle. After 4 years of speech therapy and very little progress with eating food through the mouth, I insisted that Brandon be admitted to a rehabilitation hospital to attempt intensive feeding therapy. We were in the hospital for 3 grueling weeks. Brandon has intensive feeding therapy with the best team in Austin and finally after three weeks, Brandon left able to eat a small amount of pudding each sitting. I know that doesn't sounds like much, but for Brandon it was a total miracle coming from eating nothing. For the next 5 years we worked non-stop with an intensive feeding program. Brandon still had Pediasure added each day to maintain his weight but Brandon was close to a diet that could maintain his weight. At age 9, Brandon had a major setback. He was at school and choked on a hot dog. The school called 911, rushed in the nurses, and called me. By the time I arrived, EMS had cleared his airway but I could tell Brandon had serious aspiration. I bought him home hoping his airway was okay, but we ended up in the hospital within a few hours. Brandon had several swallow studies the next few weeks and it was clear he was aspirating with every swallow and there was possible damage from the Heimlich. We had to start over. Before beginning with a new round of therapy, I consulted with his specialists. They all agreed that eating for Brandon was about quality of life and not about maintaining his weight. They also agreed that Brandon should eat whatever he wanted knowing that the Pediasure would cover the other nutrients. Brandon is always at risk for aspiration but we limit his food to soft safe solids and monitor him when he is eating. It took another year to recover back to eating food safely through the mouth, but Brandon worked hard and he cleared the the swallow studies.
So again this month the Pediasure did not arrive. I called the durable medical equipment company and they said it was pending approval from Medicaid. It had been pending for over a month. In the meantime Brandon was almost completely out of food. I called the Medicaid office and finally found someone who could tell me why it was not approved. Since Brandon had turned 21, they reviewed his records and were not approving Pediasure. But they would consider Ensure (adult formula). We had been talking about moving to Ensure anyway. But I needed a doctors order. I called Brandon's gastroenterologist, but he is out until Jan 5th. That meant that I needed to get an order from his primary care physician. BUT the primary care physician (adult) that I choose already sent us a notice he was leaving his practice. I had another one I was considering, but realized that I needed to get in for a checkup for him to approve. I called and the next appointment was in March.
So now Brandon has no PCP and no Pediasure or Ensure. He also must move his dental coverage to his waiver benefits and must move his speech therapy to waiver benefits. I also wanted Brandon to have a flu shot immediately because of his history with H1N1 and the new cases coming up in Austin. During the check on an appointment with the new doctor they said we would have to wait until after Christmas for the shot. UGHHHH. Instead I drove him to our CVS and they gave us both a shot before Christmas.
So I am not feeling like I will get mom of the year this week. We will try to hang until next week and see if we can find a PCP more available and get his benefits restarted.
But all in perspective, we had a great Christmas with my family and Brandon. Besides this snafu, life is good at the moment. We are having a little mommie and Brandon time over Christmas and have watched White Christmas several times. It doesn't get much better.
Happy Holidays everyone from Leah and Brandon.
Friday, December 27, 2013
Monday, November 18, 2013
The Value of Employment
Last legislative session, two bills were passed of great importance to Brandon. One bill includes a benefit in his Medicaid wavier program to help him learn how to work, find a job and maintain a job. The other bill says that Texas is now an employment first state. That means that the Medicaid waiver program and the schools must assume that Brandon can work first while developing his plan for the year. Why is this so important. For a young man with special needs, Brandon just wants to be like his peers. He wants to work, he wants friends and he wants to socialize. He doesn't want to sit at home all day with paid workers doing nothing. He wants to be valued for his role in life as a dependable, joyful, and easy going employee. But he also needs a job to further his socialization, find new adult friends, and find his place in his work life like all young men starting their career. For this to be accomplished, Brandon must learn work skills just like he has learned how to read, how to walk, how to swallow and many more things that don't come naturally for him. Brandon has been working on job skills for several years and has a resume of several jobs he has been learning. For me, success for his transition will be a job or several jobs in place with a regular schedule by the time Brandon has completed his school Adult Transition Program. Even better would be those jobs are paid jobs Brandon can sustain for years to come. Two years ago Brandon applied to DARS (Texas Department of Assistive and Rehabilitative Services) for services to assess him for his job skills and to help him find and keep a job. But Brandon was denied services because Brandon did not meet the DARS standard for "competitive employment". This really mad me mad because I didn't want Brandon to think he cant work. That would really be discouraging to a young man who has worked so hard all his life to be just like all his other peers and head off to his job for the future. So, I have worked very closely with the school to assure that Brandon is learning as much as possible for him to obtain a job and hope that Brandon will continue to receive employment assistance as he finds his way to a great job match for him.
Brandon has had many jobs since we began job training in high school. He has worked at a library sorting and filing books; several food banks; the attorney general office assembling packets; a fitness center cleaning and sweeping, a pet store, a non-profit disability organization working on a disability project, delivering newspapers at school, a tanning saloon cleaning and sweeping, a business group sorting and shredding and a local hospital sorting medical records. He also goes to the KOOP radio on Tuesdays for the Beatles Radio Show and helps pick out music. With all the volunteer jobs he has had, the one that seems to best fit him is sorting and delivering mail. He has had all these jobs that has helped him lead up to a great volunteer job at the University of Texas. He was able to obtain this job as a result of the transition pilot program Brandon participated in last school year. He loves this job because the work he does is a good match for him. Sorting the mail and delivering the mail. It is also a great match because he has interaction with many people. This is helping him develop good socialization skills. He really loves being around people, especially if they like him. The job also is good for developing Brandon's communication skills. We are working with UT speech and his private speech therapist to develop responses to questions, for him to ask questions and provide input to other staff. He is really getting so much better interacting with other people. This will help him develop more friends in the future and better job opportunities. He really likes this job mainly because everyone at the job really supports and encourages him.
Brandon works at UT 2 times per week in the afternoon. As we look to life after school in a little over a year, I also have to look at where will Brandon live. I have been really thinking about what is best for Brandon and the family. I am leaning toward Brandon living in Dripping Springs where my brother and I can be back-ups to the crazy schedule I know Brandon will be have each day and to be a little closer in case of medical issues. In order for this to work well, we are looking for other job opportunities closer to the house in addition to the UT job. This has proven to be a challenge. Brandon is volunteering at a few other sites but has not been able to find a great match. I know that acquiring work for people with disabilities is very difficult and maintaining the work is even harder. I am determined to hang in there with Brandon until we find that right job match. I will continue to blog on this because this is a very crucial part of transition for Brandon and many of his friends finding their place in the job market. I leave you with a great video the UT transition program did of Brandon at UT. First is a video of Brandon in his job at UT and the second UT talking about having Brandon learn work skills through this program and how it changed their perceptions.
Enjoy.
Brandon working at UT
https://utexas.app.box.com/s/qq18dfzkwphb5wwv91ec
UT Dept of Kinesology interview
https://utexas.app.box.com/s/j0av46l0a5ql57xrc2nm
Brandon has had many jobs since we began job training in high school. He has worked at a library sorting and filing books; several food banks; the attorney general office assembling packets; a fitness center cleaning and sweeping, a pet store, a non-profit disability organization working on a disability project, delivering newspapers at school, a tanning saloon cleaning and sweeping, a business group sorting and shredding and a local hospital sorting medical records. He also goes to the KOOP radio on Tuesdays for the Beatles Radio Show and helps pick out music. With all the volunteer jobs he has had, the one that seems to best fit him is sorting and delivering mail. He has had all these jobs that has helped him lead up to a great volunteer job at the University of Texas. He was able to obtain this job as a result of the transition pilot program Brandon participated in last school year. He loves this job because the work he does is a good match for him. Sorting the mail and delivering the mail. It is also a great match because he has interaction with many people. This is helping him develop good socialization skills. He really loves being around people, especially if they like him. The job also is good for developing Brandon's communication skills. We are working with UT speech and his private speech therapist to develop responses to questions, for him to ask questions and provide input to other staff. He is really getting so much better interacting with other people. This will help him develop more friends in the future and better job opportunities. He really likes this job mainly because everyone at the job really supports and encourages him.
Brandon works at UT 2 times per week in the afternoon. As we look to life after school in a little over a year, I also have to look at where will Brandon live. I have been really thinking about what is best for Brandon and the family. I am leaning toward Brandon living in Dripping Springs where my brother and I can be back-ups to the crazy schedule I know Brandon will be have each day and to be a little closer in case of medical issues. In order for this to work well, we are looking for other job opportunities closer to the house in addition to the UT job. This has proven to be a challenge. Brandon is volunteering at a few other sites but has not been able to find a great match. I know that acquiring work for people with disabilities is very difficult and maintaining the work is even harder. I am determined to hang in there with Brandon until we find that right job match. I will continue to blog on this because this is a very crucial part of transition for Brandon and many of his friends finding their place in the job market. I leave you with a great video the UT transition program did of Brandon at UT. First is a video of Brandon in his job at UT and the second UT talking about having Brandon learn work skills through this program and how it changed their perceptions.
Enjoy.
Brandon working at UT
https://utexas.app.box.com/s/qq18dfzkwphb5wwv91ec
UT Dept of Kinesology interview
https://utexas.app.box.com/s/j0av46l0a5ql57xrc2nm
Tuesday, September 10, 2013
Today truly is a transition day for Brandon. I knew the day would come, but I was hoping to keep putting this day off until later. Always a wise choice. Brandon has been having some health issues this week and last week. I wasn't exactly sure what was going on with him except that he was exhausted, possibly having seizures, then a sore throat, chest congestion, fever - oh he might have a cold. Okay, normally I would wait this out, but I am leaving for a trip and don't want to leave Brandon headed to pneumonia. So, I called his primary care doctor and insisted we come in.
I love Brandon's primary care doctor. She has been with us through H1N1, foot surgeries and referrals to Scottish rite, seizure activity for three years, coordinating with all his specialists, calling his specialist when things don't look quite right, calling us during hospital stays, calling me on weekends, nights, talking me through treatments, the list goes on. Brandon's primary care physician is Dr. Rebecca Mouser. But she is a pediatrician. Brandon is now 20 and in a few months will be 21. We have been discussing transitioning Brandon to an adult doctor, but I was hoping if I didn't bring it up, I could put it off one more visit. We went in today for our last visit with Dr Mouser. She came up with a plan of care like she always does for Brandon and an emergency plan of care while I am gone. AND we decided on a new adult doctor. I am very, very lucky that I have commercial insurance for Brandon on top of Medicaid. Medicaid always pays last and it makes it much easier to find doctors. But traditionally Austin Regional Clinic does not take any Medicaid patients. However, Brandon is primary with my employer United Healthcare and they love United. So she asked that I interview our next doctor's in the same clinic after I get back and I agreed. We decided on two possible names and tomorrow I will make appointments. I cant tell you how much the adult medical world versus the pediatric medical work is very different. With kids, pediatricians really go the extra mile trying to find the causes, making sure they have checked all possible conditions and coming up with creative treatments when sometimes it is a guess. But if you have a great pediatrician it is usually right on.
Brandon's life with physicians started at birth when the pediatrician I selected for Brandon came into my hospital room about 12 hours after Brandon's birth and said "We weren't sure your son has a brain. But we checked and he does. We just don't know how much of the brain he has". This is after Brandon was evaluated at birth with an APGAR of 8.8 (which is really good). I didn't hear any thing she said after that conversation. She continued to talk but I couldn't get past those few sentences. We were not with her very long. I moved Brandon immediately to another physician. I decided on a young and new physician with a small practice. I thought that would be a great move. But it was also disastrous. By the time Brandon was 2 he was in the hospital with pneumonia. This physician came to the hospital room and told me there was nothing else they could do for him. He almost died. I got on the phone and called every specialist Brandon has every seen and they all showed up, changed his medication and somehow Brandon made it out of the hospital. That was when I realized that I needed a great pediatrician. I choose DR Carol Faget. She was also with Austin Regional Clinic and was fabulous. We went to Texas Children's and she worked with the specialists there and completely changed Brandon's medication regiment. After that change, Brandon was rarely in the hospital. Before the change, we were in the hospital for weeks at a time. So having a great primary care physician is crucial.
She is not the only one we are losing. Brandon pulmonologist is also referring Brandon to an adult specialist and his orthopedic doctor has already dropped him. He will stay with his neurologist and gastroenterologist for now. It is also a problem when Brandon does have an emergency. EMS is very reluctant to take Brandon any longer to the Children's Hospital even though his two specialists practice there. As we left today, Brandon said he was sad that he would not see Dr. Mouser again. I told him we will see her, but that she wont be his primary doctor any longer. I am sure for him he feels very safe with her since she has helped him when he has been very ill. Last year when I went in, she showed me the volumes of files that she has on Brandon. I know that he is a great deal of work for a physician and I really have appreciated all the help she has given us the last 12 years. We will both miss her.
On to some pleasant news. One of Brandon's therapists was in England this summer headed to Ireland and stopped in the Cavern Club in Liverpool. She bought back Brandon a great Cavern Club hat which he loves.
Also, one of Brandon's previous employer's went to England and sent this:
I also received this from Lara from Italy. Brandon loved this. He has an impact around the world. I love that.
More later
Leah
I love Brandon's primary care doctor. She has been with us through H1N1, foot surgeries and referrals to Scottish rite, seizure activity for three years, coordinating with all his specialists, calling his specialist when things don't look quite right, calling us during hospital stays, calling me on weekends, nights, talking me through treatments, the list goes on. Brandon's primary care physician is Dr. Rebecca Mouser. But she is a pediatrician. Brandon is now 20 and in a few months will be 21. We have been discussing transitioning Brandon to an adult doctor, but I was hoping if I didn't bring it up, I could put it off one more visit. We went in today for our last visit with Dr Mouser. She came up with a plan of care like she always does for Brandon and an emergency plan of care while I am gone. AND we decided on a new adult doctor. I am very, very lucky that I have commercial insurance for Brandon on top of Medicaid. Medicaid always pays last and it makes it much easier to find doctors. But traditionally Austin Regional Clinic does not take any Medicaid patients. However, Brandon is primary with my employer United Healthcare and they love United. So she asked that I interview our next doctor's in the same clinic after I get back and I agreed. We decided on two possible names and tomorrow I will make appointments. I cant tell you how much the adult medical world versus the pediatric medical work is very different. With kids, pediatricians really go the extra mile trying to find the causes, making sure they have checked all possible conditions and coming up with creative treatments when sometimes it is a guess. But if you have a great pediatrician it is usually right on.
Brandon's life with physicians started at birth when the pediatrician I selected for Brandon came into my hospital room about 12 hours after Brandon's birth and said "We weren't sure your son has a brain. But we checked and he does. We just don't know how much of the brain he has". This is after Brandon was evaluated at birth with an APGAR of 8.8 (which is really good). I didn't hear any thing she said after that conversation. She continued to talk but I couldn't get past those few sentences. We were not with her very long. I moved Brandon immediately to another physician. I decided on a young and new physician with a small practice. I thought that would be a great move. But it was also disastrous. By the time Brandon was 2 he was in the hospital with pneumonia. This physician came to the hospital room and told me there was nothing else they could do for him. He almost died. I got on the phone and called every specialist Brandon has every seen and they all showed up, changed his medication and somehow Brandon made it out of the hospital. That was when I realized that I needed a great pediatrician. I choose DR Carol Faget. She was also with Austin Regional Clinic and was fabulous. We went to Texas Children's and she worked with the specialists there and completely changed Brandon's medication regiment. After that change, Brandon was rarely in the hospital. Before the change, we were in the hospital for weeks at a time. So having a great primary care physician is crucial.
She is not the only one we are losing. Brandon pulmonologist is also referring Brandon to an adult specialist and his orthopedic doctor has already dropped him. He will stay with his neurologist and gastroenterologist for now. It is also a problem when Brandon does have an emergency. EMS is very reluctant to take Brandon any longer to the Children's Hospital even though his two specialists practice there. As we left today, Brandon said he was sad that he would not see Dr. Mouser again. I told him we will see her, but that she wont be his primary doctor any longer. I am sure for him he feels very safe with her since she has helped him when he has been very ill. Last year when I went in, she showed me the volumes of files that she has on Brandon. I know that he is a great deal of work for a physician and I really have appreciated all the help she has given us the last 12 years. We will both miss her.
On to some pleasant news. One of Brandon's therapists was in England this summer headed to Ireland and stopped in the Cavern Club in Liverpool. She bought back Brandon a great Cavern Club hat which he loves.
Also, one of Brandon's previous employer's went to England and sent this:
From Janet - We got to go to abbey road on
our tour today. There is a tradition to write your name on the wall out front
of the studios (the famous cross walk is in front of it)
We wrote Brandon's name instead. Hope the picture is clear enough for you to
see it and show him!
That was so sweet and Brandon is so excited he is named in London and on top of it, on Abbey Road. I also received this from Lara from Italy. Brandon loved this. He has an impact around the world. I love that.
More later
Leah
Tuesday, August 6, 2013
A Brandon and Leah Health Update
I think I blogged many months ago about Brandon taking the complete genome tests and receiving results based on Brandon's complete profile. I had to debate with myself about whether Brandon should have these tests and would it help in regards to Brandon's current medical condition. This debate with myself started after Brandon's last hospitalization. The neurologist at the hospital did complete testing concerning Brandon's seizure activity including any genetic tests indicating a diagnosis for a progressive seizure disorder. As a result, Brandon had some tests that came back as positive. But those tests are so rare that there is no know condition associated with the gene. Therefor, the neurologist referred us back to the geneticist to perform more tests and determine impact on the ones where we had results. The complete genome tests became available within the last two years and as every day passes physicians learn more and more what each conditions (or no conditions) genes indicate. If you are into this kind of medicine it is fascinating and can provide endless hours of research. Here is a good site http://www.genome.gov/10001691
If you are a parent, the results can be overwhelming. As Brandon's geneticist indicated there have been some shocking results that have come in from these tests and then there have been many results not coming back with much of an answer. I am writing about this because many of my friends are now considering whether to have their child take these tests in their quest for better diagnosis. If Brandon's condition had not deteriorated before we had taken this test I might have reconsidered. Brandon's condition is now stable and my desire to find the right diagnosis is not as high as it was 1 year ago. But we now have all the conditions identified from the tests. For those parents wanting more information on some rare conditions, here are some good websites. Brandon is already registered for a rare gene anomaly 7Q.36.3. Every time we have this test the gene is identified. With this site you can search for other people with the same genetic marker and try to identify if there are any identifying features that are common. www.rarechromo.org. This is a great family site. For 7Q.36.3 duplication it is now fairly easy to find other people in the world with the same condition. Kind of amazing. Another great site is http://www.rarediseases.org/
The tests first identify those genes likely to explain symptoms of the patient. They will be listed as the name of the condition or gene and whether the two data bases consider the condition tolerated, benign or damaging. There is more information provided about the type of gene (novel variant, etc), the gene number, etc. According to Brandon's geneticist everyone has many results in these tests because we all are carriers of certain genes that are unique to us. Brandon is no exception. The first set of results indicated several possible diagnosis such as cerebellar ataxia, congenital disorder of the glycosylation, osteogenesis imperfect type 1-4. We ruled out osteogenesis imperfect and a few other conditions. The cerebellar ataxia does explain some of Brandon's conditions but not all. But once again, Brandon has a positive test for congenital disorder of the glycosylation (CDG). This test indicates Brandon is a carrier for Type 1 and type 1M. Here is a great site on CDG. http://www.cdgs.com/_about.html Brandon has had other tests indicating CDG or borderline CDG. When we have tested further the results have come back negative. Once again we pursued the CDG test knowing Brandon is a carrier and the test came back negative. Kind of frustrating since I know this is a repetitive pattern. But I moved past that and basically the first results of tests do not have any conclusive diagnosis. In two years we will revisit the results to determine if any new diagnosis have been determined from the results.
You also have the option for free to get the complete report which also identifies conditions Brandon could have in the future. This week we received the results of these tests. These were also numerous. Brandon could have in he future Birt-Hogg-Dube Syndrome, charge syndrome, colon cancer, glomerulocystic, Long QT, Short sleep cycle, the list goes on and on. We identified some conditions we wanted to check further and had blood, urine and radiology tests this week. The other possible conditions will get checked as Brandon gets his regular check-ups with his specialists. Dr Immken's staff did a great job categorizing these conditions and what symptoms are associated with these conditions. But overall it was pretty overwhelming
On the last page there are other mutations in genes with no current association with diseases. One of the genes identified functions in a protective capacity by promoting the clearance of bacteria in the oral cavity ad to aid in speech and swallowing. This mutation does not have a disease name at this point but this closely aligns to Brandon's disability. I know - this is all overwhelming. You should have been there. I am taking this like I have taken most of Brandon's possible diagnoses. Don't waste time on "what ifs" until the diagnosis is confirmed. It just isn't worth it. The results do tell me that we need to watch for kidney issues, colon issues, eye issues in the future and Brandon results will be kept in a database as researchers learn more about these genes.
I hope this helps someone in the future understand the genome testing.
On a personal note. I also wrote months go that I needed to concentrate on my own health issues and take better care of myself to be here for Brandon in the future. I am happy to report that I have lost 32 pounds. My goal will be to reach 8 more within 6 weeks. My tests for high cholesterol are now in normal limits and I am off medicine. My diabetes in under control with my medications reduced by 2/3s. With the loss of 8 more pounds the goal is to be only on 1 medicine. I am feeling much better, more energetic and in much better shape. Life will not stop after the last 8 pounds. I will strive for more, but I am being realistic and trying to focus on healthy eating, exercise, water and rest.
So great success for the Rummel family. Brandon is still seizure free over 1 year and I am feeling better than I have in years. Its all good right now.
More transition news next post.
Leah
If you are a parent, the results can be overwhelming. As Brandon's geneticist indicated there have been some shocking results that have come in from these tests and then there have been many results not coming back with much of an answer. I am writing about this because many of my friends are now considering whether to have their child take these tests in their quest for better diagnosis. If Brandon's condition had not deteriorated before we had taken this test I might have reconsidered. Brandon's condition is now stable and my desire to find the right diagnosis is not as high as it was 1 year ago. But we now have all the conditions identified from the tests. For those parents wanting more information on some rare conditions, here are some good websites. Brandon is already registered for a rare gene anomaly 7Q.36.3. Every time we have this test the gene is identified. With this site you can search for other people with the same genetic marker and try to identify if there are any identifying features that are common. www.rarechromo.org. This is a great family site. For 7Q.36.3 duplication it is now fairly easy to find other people in the world with the same condition. Kind of amazing. Another great site is http://www.rarediseases.org/
The tests first identify those genes likely to explain symptoms of the patient. They will be listed as the name of the condition or gene and whether the two data bases consider the condition tolerated, benign or damaging. There is more information provided about the type of gene (novel variant, etc), the gene number, etc. According to Brandon's geneticist everyone has many results in these tests because we all are carriers of certain genes that are unique to us. Brandon is no exception. The first set of results indicated several possible diagnosis such as cerebellar ataxia, congenital disorder of the glycosylation, osteogenesis imperfect type 1-4. We ruled out osteogenesis imperfect and a few other conditions. The cerebellar ataxia does explain some of Brandon's conditions but not all. But once again, Brandon has a positive test for congenital disorder of the glycosylation (CDG). This test indicates Brandon is a carrier for Type 1 and type 1M. Here is a great site on CDG. http://www.cdgs.com/_about.html Brandon has had other tests indicating CDG or borderline CDG. When we have tested further the results have come back negative. Once again we pursued the CDG test knowing Brandon is a carrier and the test came back negative. Kind of frustrating since I know this is a repetitive pattern. But I moved past that and basically the first results of tests do not have any conclusive diagnosis. In two years we will revisit the results to determine if any new diagnosis have been determined from the results.
You also have the option for free to get the complete report which also identifies conditions Brandon could have in the future. This week we received the results of these tests. These were also numerous. Brandon could have in he future Birt-Hogg-Dube Syndrome, charge syndrome, colon cancer, glomerulocystic, Long QT, Short sleep cycle, the list goes on and on. We identified some conditions we wanted to check further and had blood, urine and radiology tests this week. The other possible conditions will get checked as Brandon gets his regular check-ups with his specialists. Dr Immken's staff did a great job categorizing these conditions and what symptoms are associated with these conditions. But overall it was pretty overwhelming
On the last page there are other mutations in genes with no current association with diseases. One of the genes identified functions in a protective capacity by promoting the clearance of bacteria in the oral cavity ad to aid in speech and swallowing. This mutation does not have a disease name at this point but this closely aligns to Brandon's disability. I know - this is all overwhelming. You should have been there. I am taking this like I have taken most of Brandon's possible diagnoses. Don't waste time on "what ifs" until the diagnosis is confirmed. It just isn't worth it. The results do tell me that we need to watch for kidney issues, colon issues, eye issues in the future and Brandon results will be kept in a database as researchers learn more about these genes.
I hope this helps someone in the future understand the genome testing.
On a personal note. I also wrote months go that I needed to concentrate on my own health issues and take better care of myself to be here for Brandon in the future. I am happy to report that I have lost 32 pounds. My goal will be to reach 8 more within 6 weeks. My tests for high cholesterol are now in normal limits and I am off medicine. My diabetes in under control with my medications reduced by 2/3s. With the loss of 8 more pounds the goal is to be only on 1 medicine. I am feeling much better, more energetic and in much better shape. Life will not stop after the last 8 pounds. I will strive for more, but I am being realistic and trying to focus on healthy eating, exercise, water and rest.
So great success for the Rummel family. Brandon is still seizure free over 1 year and I am feeling better than I have in years. Its all good right now.
More transition news next post.
Leah
Tuesday, June 11, 2013
Transition Update
I haven't posted since my mom's passing. We have been really swamped. But we also have some information to share about Brandon's transition. Overall, Brandon is doing great. Brandon completed his participation in the Transition Program through the UT Special Education Department. Through this program, Brandon participated in the Best Buddies program through UT. It started out slow and Brandon was so shy, but he found a buddy and really started to enjoy the program. Here is a link to the information. http://www.utbestbuddies.com/. One of the goals for this year is for Brandon to develop friends and increase socialization. Participation in Best Buddies was one of the successes for Brandon's goal.
In addition, Brandon participated in UT's Speech and Hearing Department's speech therapy. Brandon has been to the clinic previously when he was very young, but this time Brandon focused on initiating conversation, trying to speak as clearly as possible, and development of phases to help Brandon converse with people. This also has bee a big success. I will never forget when Brandon told me to "hold on" while he gathered his thoughts to answer a question. He is now a non-stop talker at home. We are still working on talking to the public.
Brandon also had UT special education department help determine goals and objectives for Brandon to start a successful transition. They provided a student to work with Brandon one on one for 10 hours a week. Between all of the staff from UT, Brandon's school and Brandon's network we developed goals for independence and work, Brandon can make a few dishes for meals, shave, wash and fold his own clothes, tend to his own hygiene, plan and shop for food, and work at his job more independently. As part of this we also programmed Brandon's IPAD with tasks through Austimate so everyone was on the same page.
Lesli, Brandon's speech therapist has taught Brandon to make calls independently through FaceTime, develop Brandon's own schedule and using Brandon's communication device for speech when needed.
Through UT, Brandon has a job delivering mail, and doing odd office jobs needed in the department. We coordinated this job through the school and UT worked closely with Brandon to make sure he has the accommodations he needs. We are continuing this work and expanding it this summer. This meets several goals. Socialization and job development.
Sadly, the UT Transition Program has ended, but we will continue to go to the UT Speech and Hearing Center and hopefully participate in Best Buddies. Participation in the program really helped me to focused on what skills Brandon needs to work on to help him become more independent. So I am very grateful for the help.
We are now on to the summer. My goal with Brandon is to start moving Brandon to what life will be like after school. I want the transition to be smooth to have Brandon just continue on with all the activities and jobs we will set up as we transition away from the Adult Transition Program. This summer Brandon will still live in Austin with his companion Chris. He is working on Monday's in Dripping Springs with the Food Bank with other young adults working on their transition. Our first day was yesterday and Brandon really liked it. On Tuesday he is very busy with exercise at the Y, helping with the Beatles Show at the KOOP Radio, and working at UT in the afternoon. He will follow with speech therapy. Wednesdays are social days participating in two social groups. Thursday is just like Tuesday and Friday Brandon works at Top Notch and then to the Y. Our goal is to find the perfect job fit and we are continuing to trial several jobs. Thanks to all the employers willing to work with Brandon while he is developing these job skills.
Brandon continues to stay in Dripping Springs with me every weekend and will stay with me several weeks in August. So far this plan is working very well. Brandon has been very healthy this year and he stamina is much better. This has helped with Brandon's pursuit of the right job match.
Brandon and I did take a short vacation after school and the legislative session to the coast. It was great to have some time together and to relax. And of course we went to see Paul McCartney, Brandon could barely contain himself. I will leave the blog today with a few pictures.
In addition, Brandon participated in UT's Speech and Hearing Department's speech therapy. Brandon has been to the clinic previously when he was very young, but this time Brandon focused on initiating conversation, trying to speak as clearly as possible, and development of phases to help Brandon converse with people. This also has bee a big success. I will never forget when Brandon told me to "hold on" while he gathered his thoughts to answer a question. He is now a non-stop talker at home. We are still working on talking to the public.
Brandon also had UT special education department help determine goals and objectives for Brandon to start a successful transition. They provided a student to work with Brandon one on one for 10 hours a week. Between all of the staff from UT, Brandon's school and Brandon's network we developed goals for independence and work, Brandon can make a few dishes for meals, shave, wash and fold his own clothes, tend to his own hygiene, plan and shop for food, and work at his job more independently. As part of this we also programmed Brandon's IPAD with tasks through Austimate so everyone was on the same page.
Lesli, Brandon's speech therapist has taught Brandon to make calls independently through FaceTime, develop Brandon's own schedule and using Brandon's communication device for speech when needed.
Through UT, Brandon has a job delivering mail, and doing odd office jobs needed in the department. We coordinated this job through the school and UT worked closely with Brandon to make sure he has the accommodations he needs. We are continuing this work and expanding it this summer. This meets several goals. Socialization and job development.
Sadly, the UT Transition Program has ended, but we will continue to go to the UT Speech and Hearing Center and hopefully participate in Best Buddies. Participation in the program really helped me to focused on what skills Brandon needs to work on to help him become more independent. So I am very grateful for the help.
We are now on to the summer. My goal with Brandon is to start moving Brandon to what life will be like after school. I want the transition to be smooth to have Brandon just continue on with all the activities and jobs we will set up as we transition away from the Adult Transition Program. This summer Brandon will still live in Austin with his companion Chris. He is working on Monday's in Dripping Springs with the Food Bank with other young adults working on their transition. Our first day was yesterday and Brandon really liked it. On Tuesday he is very busy with exercise at the Y, helping with the Beatles Show at the KOOP Radio, and working at UT in the afternoon. He will follow with speech therapy. Wednesdays are social days participating in two social groups. Thursday is just like Tuesday and Friday Brandon works at Top Notch and then to the Y. Our goal is to find the perfect job fit and we are continuing to trial several jobs. Thanks to all the employers willing to work with Brandon while he is developing these job skills.
Brandon continues to stay in Dripping Springs with me every weekend and will stay with me several weeks in August. So far this plan is working very well. Brandon has been very healthy this year and he stamina is much better. This has helped with Brandon's pursuit of the right job match.
Brandon and I did take a short vacation after school and the legislative session to the coast. It was great to have some time together and to relax. And of course we went to see Paul McCartney, Brandon could barely contain himself. I will leave the blog today with a few pictures.
Bandon at the coast
Brandon in Rockport with Uncle Jimmy Art'
At Paul McCartney
Sunday, March 3, 2013
Goodbye Grandmommie
"I am sad and happy" was what Brandon said yesterday. Brandon went to special Olympics Bowling yesterday morning to participate in his individual competition. I was really proud of him. He supported his competition from another school. The other boy was in the wheelchair. They both did great in the competition. Brandon insisting on pushing his wheelchair from one event to another and then to the medal ceremony. At some point I heard Brandon say "he should win gold and I should win sliver" Indeed that is what happened. Brandon was very happy with the outcome and I was proud of him. Five years ago he would not have said the same. Great Sportsmanship.
In Rummel tradition, after the competition in San Marcos we headed over to the Outlet Mall. I bought Brandon some new shoes and new sheets. But the phone rang as we were checking out. It was my brother asking me to come over to check on my mom. She has been in a nursing facility since her surgery in late October. We were about to move her to a new facility in central Austin and I had been meeting with the nursing home, hospice services and making transition arrangements for several weeks. My mom was checked last week for dementia and had great results. She had lost 20 pounds, but in good spirits and could carry on a conversation with you. At 91 she was doing remarkable well given all her medical issues. Brandon and I drove over to the nursing home and I called hospice on my way over. Brandon and I got to her room and it was clear that she was about to leave us. She was in and out of consciousness. Brandon was sad and excited not knowing exactly what was happening. The hospice nurse took us out in the hall and explained that my mom (Brandon's grandmother) was dying. Brandon listened to this and related to George Harrison and John Lennon. He said that she was headed to heaven. Brandon's brother Patrick called in the middle of this on FaceTime from Iraq and talked to Brandon. Brandon said he was sad and happy. Happy that he had won in Special Olympics but sad that his Grandmother was headed to heaven. Brandon was very sweet and started patting my mother. In some ways he was handing it better than everyone else. Brandon went home with Ross for the rest of the day. This morning I came back to the nursing home and at 3:00 after my brothers left the nursing home and then my mother silently stopped breathing. She had a good life and she said she was ready to move to that next phase. We were all sad but also did not want her to suffer any longer. My brother Jack and I sang My Old Kentucky Home for her with a You Tube video.
My mom was Brandon's rock. From the time he was born she was 100% supportive of all things Brandon. She helped with his care, supported him financially when I could not, she helped with school decisions, care giver decisions, therapies, doctors visits, stayed at the hospital with him for the numerous hospital stays early in his life. She helped try to teach Brandon many things because of her school teacher background. She was a rock star grandmother. My mom lived a great life and a long life to age 91. We are all going to miss her in our lives. I think especially Brandon because they really had that special bond. So today's blog is a tribute to "Mary Rummel" who is now up in heaven in her Old Kentucky Home she so loved.
In Rummel tradition, after the competition in San Marcos we headed over to the Outlet Mall. I bought Brandon some new shoes and new sheets. But the phone rang as we were checking out. It was my brother asking me to come over to check on my mom. She has been in a nursing facility since her surgery in late October. We were about to move her to a new facility in central Austin and I had been meeting with the nursing home, hospice services and making transition arrangements for several weeks. My mom was checked last week for dementia and had great results. She had lost 20 pounds, but in good spirits and could carry on a conversation with you. At 91 she was doing remarkable well given all her medical issues. Brandon and I drove over to the nursing home and I called hospice on my way over. Brandon and I got to her room and it was clear that she was about to leave us. She was in and out of consciousness. Brandon was sad and excited not knowing exactly what was happening. The hospice nurse took us out in the hall and explained that my mom (Brandon's grandmother) was dying. Brandon listened to this and related to George Harrison and John Lennon. He said that she was headed to heaven. Brandon's brother Patrick called in the middle of this on FaceTime from Iraq and talked to Brandon. Brandon said he was sad and happy. Happy that he had won in Special Olympics but sad that his Grandmother was headed to heaven. Brandon was very sweet and started patting my mother. In some ways he was handing it better than everyone else. Brandon went home with Ross for the rest of the day. This morning I came back to the nursing home and at 3:00 after my brothers left the nursing home and then my mother silently stopped breathing. She had a good life and she said she was ready to move to that next phase. We were all sad but also did not want her to suffer any longer. My brother Jack and I sang My Old Kentucky Home for her with a You Tube video.
My mom was Brandon's rock. From the time he was born she was 100% supportive of all things Brandon. She helped with his care, supported him financially when I could not, she helped with school decisions, care giver decisions, therapies, doctors visits, stayed at the hospital with him for the numerous hospital stays early in his life. She helped try to teach Brandon many things because of her school teacher background. She was a rock star grandmother. My mom lived a great life and a long life to age 91. We are all going to miss her in our lives. I think especially Brandon because they really had that special bond. So today's blog is a tribute to "Mary Rummel" who is now up in heaven in her Old Kentucky Home she so loved.
Sunday, January 27, 2013
Transition Update
It has been a while since I have blogged about Brandon's progress on his transition. A few of you have asked. This is to give everyone the latest update.
We are now 6 months into Brandon's independent living arrangement. It is really going very well. I don't want anyone to think this has all been very easy. We have definitely had our ups and downs. But looking back over the last six months, it is really going very well. Brandon's companion Chris is the perfect match for Brandon. He loves music, he has extensive knowledge of young adults transitioning from living at home to a more independent setting, he lets Brandon has his own space and is subtle when working in independence in the process, he is very laid back and easily rolls with the occasional ups and downs with Brandon, and Brandon and Chris both have the same personality. All of that has worked well for the transition. I can say after 6 months Brandon and Chris have bonded. It has also helped that Brandon's aide Ross, has been with Brandon for the last three years. Brandon and Ross bonded years ago and Brandon really trusts Ross. So the three of them are a great team for success.
Brandon has developed some great wins in his independent living skills. Number one - he is really happy. He occasionally misses his mom, but we have Facetime and he sees me every weekend. He still says he wants to live with me, but it is not as insistent as he has been earlier in the process. He has learned much more about boundaries and privacy. He is more independent in the bathroom. He is learning to shave by himself, brush his teeth, comb his hair and get dressed independently. And most important - for the first time in 20 years Brandon is no longer dependent on a diaper when sleeping. Brandon is much more engaging and will carry on a conversation with you. He will engage with other people, even if on a limited basis, and you can understand what he is saying easier because he is trying hard to say words so someone can understand him. Over Christmas he spontaneously told strangers "Merry Christmas" and then "Happy New Year". Last weekend he told a few people when we were out and about "Happy Martin Luther King Day". The first time it happened I was shocked he engaged, but really proud of him for engaging. He is taking time when having conversations by saying things like give me a minute or I will be right back. The challenge is when he really starts talking, trying to understand everything he is saying. Usually it is about music and it can get very obscure in details about a band or a song and I may not know it in context. But it is great success for him. Brandon is learning at the house daily living skills that we have programmed on Autismate, an app for his IPAD. Lesli, Brandon's speech therapist has helped everyone learn how to program on the app. We have programmed how to wash clothes, shave, warm up pizza and Chris is thinking about how to make mac and cheese. So for being only 6 months in, I am really amazed at how far Brandon has come.
But that is not all. We are also working with the University of Texas Transition program and Speech Therapy program and they have helped Brandon with developing those key phases and how to talk to strangers. They also are working with the team on developing tasks for the areas we have identified as our current focus like shaving and shopping for groceries. This has really helped us put the whole program together. In addition, the team has worked with Brandon and UT resulting in Brandon starting a new job at UT. This job meets all of Brandon's needs for work. We wanted a job that has social engagement, we wanted Brandon to work on developing skills for delivering mail and office type skills and we wanted an environment that would accept the need for Brandon to develop those skills. The job is a great match. UT also has an intern working with Brandon developing those items we have identified as a need. We have made great progress.
At school, Brandon is working on the job at UT, still maintaining his work at Seton and still working with the KOOP radio on the Beatles show each Tuesday. He is now eating again at school since his health is better. So we have added shopping for food and supplies and making his own meals. He also exercises 3 times a week at the Y. Fridays the whole group has social activities. Brandon has a job coach that works with him at his jobs.
The whole process is really coming together. Brandon's network has developed areas of focus for this year. I took a picture shot of the areas of focus.
We are now 6 months into Brandon's independent living arrangement. It is really going very well. I don't want anyone to think this has all been very easy. We have definitely had our ups and downs. But looking back over the last six months, it is really going very well. Brandon's companion Chris is the perfect match for Brandon. He loves music, he has extensive knowledge of young adults transitioning from living at home to a more independent setting, he lets Brandon has his own space and is subtle when working in independence in the process, he is very laid back and easily rolls with the occasional ups and downs with Brandon, and Brandon and Chris both have the same personality. All of that has worked well for the transition. I can say after 6 months Brandon and Chris have bonded. It has also helped that Brandon's aide Ross, has been with Brandon for the last three years. Brandon and Ross bonded years ago and Brandon really trusts Ross. So the three of them are a great team for success.
Brandon has developed some great wins in his independent living skills. Number one - he is really happy. He occasionally misses his mom, but we have Facetime and he sees me every weekend. He still says he wants to live with me, but it is not as insistent as he has been earlier in the process. He has learned much more about boundaries and privacy. He is more independent in the bathroom. He is learning to shave by himself, brush his teeth, comb his hair and get dressed independently. And most important - for the first time in 20 years Brandon is no longer dependent on a diaper when sleeping. Brandon is much more engaging and will carry on a conversation with you. He will engage with other people, even if on a limited basis, and you can understand what he is saying easier because he is trying hard to say words so someone can understand him. Over Christmas he spontaneously told strangers "Merry Christmas" and then "Happy New Year". Last weekend he told a few people when we were out and about "Happy Martin Luther King Day". The first time it happened I was shocked he engaged, but really proud of him for engaging. He is taking time when having conversations by saying things like give me a minute or I will be right back. The challenge is when he really starts talking, trying to understand everything he is saying. Usually it is about music and it can get very obscure in details about a band or a song and I may not know it in context. But it is great success for him. Brandon is learning at the house daily living skills that we have programmed on Autismate, an app for his IPAD. Lesli, Brandon's speech therapist has helped everyone learn how to program on the app. We have programmed how to wash clothes, shave, warm up pizza and Chris is thinking about how to make mac and cheese. So for being only 6 months in, I am really amazed at how far Brandon has come.
But that is not all. We are also working with the University of Texas Transition program and Speech Therapy program and they have helped Brandon with developing those key phases and how to talk to strangers. They also are working with the team on developing tasks for the areas we have identified as our current focus like shaving and shopping for groceries. This has really helped us put the whole program together. In addition, the team has worked with Brandon and UT resulting in Brandon starting a new job at UT. This job meets all of Brandon's needs for work. We wanted a job that has social engagement, we wanted Brandon to work on developing skills for delivering mail and office type skills and we wanted an environment that would accept the need for Brandon to develop those skills. The job is a great match. UT also has an intern working with Brandon developing those items we have identified as a need. We have made great progress.
At school, Brandon is working on the job at UT, still maintaining his work at Seton and still working with the KOOP radio on the Beatles show each Tuesday. He is now eating again at school since his health is better. So we have added shopping for food and supplies and making his own meals. He also exercises 3 times a week at the Y. Fridays the whole group has social activities. Brandon has a job coach that works with him at his jobs.
The whole process is really coming together. Brandon's network has developed areas of focus for this year. I took a picture shot of the areas of focus.
This is a picture shot to show an example of the "Living Skills Areas" of focus. Each area above has it's own list.
I hope this helps someone in the future with their own transition. We are all learning along the way, but having a plan for the year has helped everyone focus on where we are headed.
Brandon has had a few weeks where he has been very upset, but they have been when I have traveled for a longer period of time, or when I have changed the schedule. Everyone has worked to keep an update to date calendar for Brandon so he knows what is coming next. That has really seemed to help.
I cant ask for a better team at home, at school, at UT, his therapists and his network. Looking forward to the next 6 months. BIG WIN.
More later
Leah
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