Thursday, January 11, 2018

Brandon Update

A few of you have asked how Brandon is doing with his medical issues.  This wont be too long today, but I did want to provide an update.  If you look at my post of Nov 6th you will see the medical regiment we started.  We started all medications in October and Brandon began transitioning off Keppra to Briviact.  The neurologist and I discussed the side effects of Keppra, including the inability to absorb vitamin D (not as bad as some other drugs), anxiety, and a few other side effects. The neurologist feared from some of Brandon's symptoms that he may be having mini seizures on Keppra.  I asked to move to Briviact.  Briviact is in the same family of drugs as Keppra, it is a newer version and it claims to have less side effects.  It is still a very powerful anti-seizure medicine and has it own side effects.  But based on my review of the drug, reading lots of sites, reviews from people taking the drug and getting more info from physicians I thought it was the best option for Brandon's type of seizures (partial complex).  Brandon has never transitioned from a seizure med without hospitalization.  So I was worried.  In addition, I knew there would be ups and downs as we were moving to the new drug.

At the same time Brandon's new integrative medicine doctor gave us a series of supplements to raise Brandon threshold for resistance to seizures.  I was hoping that with the supplements we would be able to avoid a hospitalization.  The good news, we were able to successfully transfer from Keppra to Briviact.  Brandon had a few highs and lows with some unexplained fever for a few weeks (spiking to 103.5 with no other symptoms) and a couple of meltdowns which are extremely rare for him.  But we made it through the transition and we are almost 1 month just on Briviact.

In addition, Brandon is regularly going to the Y and doing weight bearing exercises, started back with horseback riding (with lots of volunteers around him), taking mega doses of vitamin D and other supplements and has formally moved to a gluten free diet.  Brandon has started taking a new medication named Forteo to build back bone mass.  This drug is not without risks and must be injected each day. Brandon has been a trooper for completely letting everyone do the injections without any objections.  Forteo is only one of two drugs on the market that builds back bone mass and it is only to be taken for severe cases of osteoporosis. It also should not be taken longer than 18 months to max of 2 years.  I was a little worried Brandon's insurance companies would make us go through hoops to get it approved, but to my surprise the drug was immediately approved by all plans.  Also, I decided I could no longer deal with Brandon's old Part D plan and we moved to a new Part D plan Dec. 1st.  It has been much smoother.

I have been watching Brandon's progress through this whole transition and asking those who work with him what they have seen.  I think the consensus is that Brandon is now highly engaged, more energetic and those nervous habits Brandon has developed from the Keppra seems to have decreased.  I know it will take a while for the Briviact to totally replace Keppra, but so far the changes have been extremely positive.

This month we go back to check in with the neurologist with the goal to now get Brandon on the Texas list for persons eligible to purchase and use cannabis to help control seizures.  We will be working closely with his physicians and the dispensary to get a plan for dosage and monitoring.  This transition will be similar to moving from one seizure medicine to another because we will lower the dose of Briviact while starting doses of the cannabis.  The goal is to lower the Briviact to the lowest safest dose and use the cannabis oil to supplement and keep Brandon seizure free.  Of course I hope Brandon can completely move off Briviact, but I am going to take this one step at a time with Brandon and see what he is willing to tolerate.  Below is a link to a good story on the new cannabis law and dispensaries starting up around the state.

Brandon really gets the gold medal for putting up with all the supplements, the change in diet, the new medicines and all the changes in medicines.  He really has been very supportive and helpful.  He did tell us that he is scared with all the new medical issues and I think very dedicated to getting better.  Rock star!!!

Speaking of rock star, Brandon has continued to do more Beatles interviews and I have to say they really are pretty amazing.  But there is so much content that we wont be able to use all the content on KOOP Radio.  One of Brandon's dreams on his plan for the future is to have his own Beatles blog.  So we decided to start a Beatles Blog featuring the long version of all the interviews.  Brandon and Elizabeth (his aide) have been working hard to get it ready for viewing in the near future.  So he is pretty excited about all his interviews.  It is also great for him to think of questions to ask, work to find pictures, videos and other content and selection of music for each interview.  It really helps him engage.  AND he is asking everyone if they have met a Beatle and what is their favorite Beatles song.  Ha.  Every time I see him during the week he asks me who will he interview next.  I love that he is so engaged.  Of course that is because the Beatles make him happy.  As long as he is happy through all of this I am happy.  

More later.  

Monday, November 6, 2017

More information on Brandon's health update - Nutrition

Before I forget everything from today I think may be important, I decided to write it down and share with everyone.  So to catch everyone up –

Brandon was diagnosed with severe osteoporosis.  If you look at my last blog I give an overview of recommended treatment to get him back on track.  Below is a good example of what normal bone health versus poor bone health looks like.  This shows how fragile the bone is with osteoporosis.  

We have seen 4 new physicians to develop a great treatment plan for Brandon.  A new neurologist, a new orthopedist, a new endocrinologist and a new kind of physician – integrative medicine.   From all of these visits with the new team we have put together a great plan to move seizure medications (Keppra to Briviact), add supplements to boost the seizure threshold level, a new drug to rebuild bone (forteo), new supplements to boost vitamin D and bone health, and future use of CBD oil (cannabis)  to possibly lower seizure medication levels.  In addition, we found out that we can no longer put off treatment for Brandon’s scoliosis requiring surgery on Brandon’s back as soon as possible.  

But we were missing nutrition.  Nutrition plays a large role in Brandon’s recovery.  Today we met with the new nutritionist.  She came highly recommended from several families.  She was refreshing.  Brandon has been drinking smoothies each morning.  Up until this year we had been giving him boost.  This year we have moved him to smoothies in the morning.  After researching what base to use for the smoothies we decided to use “Vega One All in One Shake”. It is plant based and has an excellent mix of nutrients.  We have been mixing it with soy because Brandon seems to react negatively to any milk based product.  However, the nutritionist recommended moving to Flax Milk to help with absorption.  In addition, she recommends we add addition ingredients for an overall boost to his nutrition.  The good news – as long as it has chocolate, Brandon usually drinks it.  I will post below the complete mix.  I am not saying this is the smoothie for everyone, but it has been blessed as a general great mix by several physicians for Brandon. 

As I suspected, she also is strongly suggesting that Brandon move to a Gluten free diet.  This is for several reasons.  First, it is excellent for seizure control and may help reduce the level of seizure medication.  But second, Brandon has quite a few indications he may have Celiac’s Disease.  The treatment for this is a gluten free diet.  I don’t think there is any downside to moving to it, so this week we will start transitioning to a gluten free diet.  The good news he can still have cheese.  She also recommended adding a probiotic and daily vitamin D.  We will be testing for several other deficiencies and may add Replesta which is recommended to treat vitamin D deficiency.  I will let you all know after we do a few more tests.  All good.
So how is the plan going?.  We are 5 weeks in. 

FORTEO - The Forteo injections are tougher on those giving the daily injections than probably on Brandon.  He doesn’t seem to have any side effects at this point.  He did have some muscle pain in the first week.  Unitedhealthcare approved the drug, but the Brandon’s Medicare part D plan has not and we are almost out.  So today I worked on trying to get the drug filled and moving forward approvals.  This drug must come from a specialty pharmacy.  I hope this goes smoothly and I don’t have to write another crazy blog on how frustrated I am getting approval for this drug.  But I do understand that this drug is really the only drug that rebuilds bone.  Hopefully the Part D plan will understand it as well.  Let me say, I don’t love that Brandon has to take this serious medication, but I don’t want a major break that can’t be  repaired and therefore leaving Brandon with long term pain. 

SUPPLEMENTS - Brandon has been taking the supplements to raise the threshold for seizures and the weekly dose of 50,000 IU of vitamin D3.  I have found the best way to give them to him is to mash them up and combine in some very yummy yogurt with a little honey.  I decided not to add any more supplements until Brandon is fully moved to his new seizure medicine, Otherwise, I wont know which medicine or supplement is a problem.  I will add the rest of the supplements in December.  The picture is my Sunday night routine with a glass of wine, what seems like 100 capsules and preparing packets for the week. 

BRIVIACT – That leads me to seizures.  I was anticipating that the move to Keppra was going to be hard both for insurance approval and possible seizure activity. But the medicine was approved quickly and so far, the transition is going smoothly.  Brandon was a little sleepy the first week, but he is getting more active as we move more to Briviact.  I believe that between the supplements and the new medicine Brandon is much more alert, engaged and interactive.  We will watch for the next month to see where he lands on the new medicine and any improvements in those awful side effects. 

CBD Oil (Cannabis oil) – I have purchased the recommended CBD oil (Charlottes Web) for Brandon.  But I decided not to start this until he is stable under the new seizure medicine (Briviact).  I don’t want too many changes.  Once we start the CBD oil we will modify the Briviact and lower the dose.  He could also become unstable with this change.  I didn’t want to do this until he has a good level using his new medicine.  Lots of change sometimes is not good. 

I think so far the whole plan is going very well.  We won’t test Brandon again for vitamin D levels until next year.  The doctors believe it will take at least 6 months to get his vitamin D level back to normal.  It will take at least 2 years to build back bone health.  I have no idea what we will be able to do to help Brandon with seizures, but I am willing to take a risk and I think Brandon is as well.  So far so good. Just a little crazy trying to keep all the medications and supplements organized for now.  More later.

Otherwise, gluten free diet.  Foods Brandon can eat:
Brandon’s favorite foods - Evol mac and cheese; Amys gluten free enchiladas, VIA 313 Gluten free pizza, Austin Pizza (gluten free), trader joes has lots of gluten free pasta, corn tortillas instead of flour.  Alvocados are fine.

Friday, October 6, 2017

A Brandon health update - it all about the bones.

This month has been filled with highs and low, a little depression and little hope, some shock and some information answering long unanswered questions, conflicting opinions and a little more clarity and finally the beginning of a plan to get Brandon's health back on track.  I normally would not post this technical of a post.  But I had several parents asking me questions about what I found out because their child or young adult had something similar.  Also this is a plan just for Brandon and all of his medical issues and complications.  I promised to let everyone know what was recommended.  Special thanks to Ivy, Linda, Rosemary, Patty, Betsy, Norine and many more of you for the information.  We would not be this far without you.  So here it is.

In Sept, I made an appointment with Brandon's new primary care physician (PCP) for a regular physical.  Right before the appointment, Brandon was limping on his foot.  When I checked it, it appeared swollen and bruised.  At the appointment, I asked the PCP to check Brandon's foot.  He did an x-ray and said he didn't see a break in Brandon's foot, but Brandon's bone health did not look good.  He suggested Brandon do a bone density exam and scheduled it that week.  We had the bone density test.  The results showed that Brandon's bone density is seriously low with a high probability in the future of a break in the spine and femoral neck. I pulled the prior bone density report from 2008 (referenced in the new report) and thought that the bone density had decreased 30%, but after talking to a few physicians, it is actually 30% better.  That is great news.  The bad news is that the bone density is still very bad.  I reached out to some other moms, professionals, Brandon's network and his aides.  I decided to get some information from several sources before making decisions on treatment.

We went to a new adult endocrinologist first.  She was recommended and referred to us from Brandon's new PCP.  We both liked her, but admitted she doesn’t have many patients similar to Brandon.  She reviewed the new and old bone density report and confirmed it had improved, but was still very bad with a diagnosis of osteoporosis.  She said this was unusual for a young man who is 24 yrs old.  She believed that the low bone density was caused by a series of seizure medications and occasional steroid treatments.  She agreed that the current seizure medication Keppra can cause low bone density, but was unlikely to be the sole reason why Brandon has poor bone health.  She ordered some blood tests and urine tests, but did not recommend any treatment except to increase vitamin D for the moment.

Last week Brandon also saw a new adult orthopedic and spine physician.  He was recommended by Brandon's pediatric orthopedist.  We went in just to discuss low bone density, but in the waiting room and over the last few weeks I remembered that Brandon has been complaining about his back hurting. This physician is not a surgeon.  This physician reviewed Brandon's previous scoliosis x-rays and the bone density scans and started discussing the possibility that Brandon will need scoliosis surgery.  Yea I know, we didn't go in for that.  But he explained that this is about Brandon's health in 10 years not his health now.  He said Brandon's scoliosis will decline about 1 ½ percent each year. After a certain degree of curvature it is more difficult to repair the spine.  Brandon will most likely be in pain and possibly need to use a wheelchair if he does not do the surgery.  He also said that it is not possible to do the surgery at this point because Brandon's bones are like Styrofoam, so rods and pins would not stay and could possibly break the bones. They need the bones to be like hard wood for the surgery to be successful.  I told him that the pediatric orthopedic physician did not recommend surgery but the adult orthopedic surgeon did in 2013.  They disagreed on the curve of the spine (46 vs 52%).  He said he wanted to do another x-ray and compare all the films.

The next appointment was with Brandon's new adult neurologist.  He was highly recommended from several of my "mom" friends.  We decided to go see him because Brandon may need to change seizure medications or determine alternatives to lower the dose to allow for absorption of vitamin D.  The neurologist went over options for medications and asked about Brandon's side effects from the medication.  One of the side effects he didn't care for and suggested we move to Onfi.  We also discussed CBD oil such as charlottes web as a possible way to lower the dosage.  The visit was good.  But I came home and reviewed the side effects of Onfi.  Side effects listed include – “may make swallowing more difficult, may cause drooling, may cause respiratory infections”.  All of those side effects are Brandon's weakest areas.  I don't believe we will move to Onfi.  Instead, I asked the neurologist if going to the new generation of Keppra (without as many side effects) would make sense for Brandon.  He agreed and we are about to start adding in Briviact, while reducing and eventually removing Keppra. The good news is the transition should be smoother because the drugs are similar.  Every previous transition has resulted in a hospital stay.  I am hoping this one is much better.

The last appointment was with a physician recommended by several people (with a little push).  This doctor practices integrative medicine.  Integrative medicine is
healing-oriented medicine that takes account of the whole person, including all aspects of lifestyle. It emphasizes the therapeutic relationship between practitioner and patient, is informed by evidence, and makes use of all appropriate therapies. I have been excited for Brandon to see this doctor because I was hoping she could put all of this information together into a full plan of care, and she did. 

Bone Health - This doctor believes Brandon's o
steoporosis is caused from past medication use (both steroids for his lung issues over the years and seizure medications - not as much contributed to Keppra) and Brandon's slow progress to walk and actively use all muscles earlier in life. The doctor discussed Brandon's poor bone quality and the goal to improve bone quality. We also discussed that Brandon's scoliosis progression has been linked with bone quality and been shown to be a better marker of poor bone quality and fracture risk even more than bone density.  She explained that because of Brandon's young age it is extremely important he rebuilds his bones. Her treatment recommendation was use of Forteo to rebuild bone via stimulating the osteoblasts directly. She is hoping for use of Forteo for at least 1 year, possibly 18 to 24 months.  Brandon is not thrilled with this recommendation, but I had two very qualified physicians insist this is the only treatment to restore bone.  The medicine must be injected daily.  In addition, Brandon will need vitamin D.  Brandon will take 50,000 units of vitamin D a week to increase vitamin D levels approximately 10 points a month.  In 2018 he will recheck his vitamin D levels. She also recommended increasing potassiums citrate either with foods or by supplementation to help decrease calcium excretion in the urine. We will start by trying it with food as many foods like coconut water, tomato sauce, beans, squash and baked potatoes with skin are high in potassium. We also discussed using a vibratory platform for 10-15 minutes a day at 40 Hz.

Seizures - We discussed a more natural approach to seizures, with use of natural supplements to raise seizure threshold and CBD oil to see if we can lower the seizure medication and avoid some of the side effects.  The main ones recommended include:

  • N-acetylcysteine (NAC) which is used in individuals with various lung issues to decrease respiratory infections which would be a secondary benefit for Brandon and is used in children with cystic fibrosis from a very young age at 1200 mg twice a day. We will start with 600 mg twice a day but may increase to as high as 1200 if he is not having any stomach issues or other side effects.
  • Avmacol- The other supplement that comes in a chewable which has been studied with autism and also has been shown to raise the seizure threshold is sulforaphane. The brand that came out of Johns Hopkins and is most well studied is called avmacol. This also can help with neuro regeneration and Brandon does have a gene variant associated with nerve issues.
  • CDP-choline -The third supplement which is well studied in children as is used for strabismus but also helps with nerve repair and can help decrease seizures is Citicholine or CDP-choline.
  • CBD oil to help with side effects and possibly decrease seizures. 

Other supplements to consider for Brandon related to mitochondrial issues - Brandon has a genetic marker for these. 

  • Methylfolate - This helps with balance issues and muscle atrophy.
  • Acetyl L-carnitine - is a mitochondrial supplement; and
  • CoQ10, UBQH, Alpha lipoic acid
  • CPT2/CPT3 (carnitine palmitoyl transferase) to help with fevers and illness such as H1N1.
  • She also recommends Brandon eat carbohydrates round the clock if he gets a fever.

The doctor reviewed Brandon’s genome results and discussed updating the genome tests because he has a lot of genetic potentially pathogenic variants we can explore later for clues as to how best optimize Brandon's functioning.  

I know - WOW.  We will start with the bone health medications and gradually add the seizure supplements and if he is doing well add the others.

As I was sitting in her office, the ortho physician called.  He stated that Brandon's scoliosis is now at 52%.  He again explained that Brandon's scoliosis will continue to decline.  He said we must improve his bone health and he must have surgery to repair. Yea another OMG,

Lastly, we discussed with the different physicians and I think it was agreed that Brandon needs to re-look at his diet.  Through my mom network I found a great dietician that specializes in these more complex cases.  She has helped several of my friend’s young adults with dramatic results.  So I have called to get a nutritional appointment.

We stopped Brandon's horseback riding.  But I asked each physician about his ability to ride.  They all agreed the riding will improve his bone health as long as someone walks with him to make sure he doesn't fall he should be fine.  We will start back up.

So this weekend we will start vitamin D, Forteo and Briviact and take it from there.  I will let you know if we see any results along the way.  I am feeling a little sorry for Brandon having new medicines and changing his seizure medicines. But Brandon always amazes me because he seems to take new treatments, tests, doctor appointments much better than I ever would.  I have a rock star son.  Love him.

Saturday, December 31, 2016

2016 a Reflection on the Year and 2017 More to Come.

I realized today that it has been over 1 year since I have posted on the blog.  There have been so many changes and in some ways still the same.  So here is our 2016 year of Brandon and Leah and  an update on our quest for the "good life" for Brandon.  Sorry if I have been too darn busy this year to get with friends, work on more projects and get out for some entertainment.  I plan on 2017 being a better year, a more well rounded year for us all at the Rummel compound. 

A little reflection on the last year made me realize that Brandon's plan for a "Good Life" is always a work in progress with changes every week.  I wasn't certain what life would be like after Brandon left school.  I can honestly say life is about Brandon's choices now - his guitar lessons, singing in "We are the Chorus", participating in Exceptional Saturdays, hanging with Rush on "Off the Beatle Path" Radio show each Monday, RedArena, hanging with his friends, staying home with his roommate and calling his mom whenever he wants on FaceTime.  It is an exciting time and fun for me to see Brandon grow so much. But there are also 5 people helping Brandon, a roommate with a full time job, sicknesses, medications and DME supplies, reporting to SSI, meeting with case managers, scheduling, changes in the weekly events, bank accounts, keeping up with all things Brandon.  This part really requires me to be on my toes at all times.  As long as I am 100%, in the same city, and paying attention to all things Brandon it works fine.  So this next year (2017), trying to make this smoother  is something Brandon's personal network "The Cavern Club" will be working on. 

Brandon's arrangement to live in the house next door with a roommate is really working very well.  Brandon likes this arrangement much more than having a caretaker.  We will continue with this arrangement for the future.  Brandon's jobs are going great. He still works at UT and a DME company each afternoon except Fridays.   Here are the more significant events of 2016. 
Brandon and his roommate Nathan

The Fire - On Nov.30th, 2015, Brandon had been sick.  I was very pre-occupied with working and trying to care for him.  I knew he had become worse and we needed to see the doctor.  I finished up my last conference call, made an appointment for the urgent care center, grabbed Brandon and headed over to urgent care clinic.  Normally in the early evening (6:00), I would check on the chickens and the goats and lock them in the barn for the night.  But I didn't have time this evening.  I was almost to the urgent care clinic about 30 minutes from the house when Tony called me.  He sounded panicked.  He had just pulled up to the house.  As he was getting out of the car he saw an orange glow.  He turned towards it and realized the barn was on fire.  He ran to check on the animals and heard them down the hill. He called 911 and then he called me.  Of course he wanted me to come home.  So a little secret here - all you special need moms will understand.  I thought - the fire trucks are on their way, Tony is there, it will take me 30 minutes to get home and there is nothing I can do about the fire at this point.  But I knew Brandon was very ill.  I went ahead to the clinic.  Luckily, our physician got us in and out with a diagnosis of pneumonia.  I drove pretty fast back to the house.  The street was blocked off and there were a ton of fire trucks, a pool for water and more firemen than I have ever seen.  It turns out that there was a volunteer fire department training around the corner with 40 volunteer fire fighters who just came to our house instead.  The electricity was out and there had been some movement of the fire in the trees very close to the house.  The barn was the size of a small house.  In the barn was a workshop, storage, a large chicken coop, an area I built for the goats, a green house and the starting of a little guest space.  Everything was gone.  The smell from the fire was almost unbearable and toxic.  I am telling you this because this has been taking a great deal of my free time for the last year. Receipts from tools, upgrade to the structure, filing claims for replacement; and clean up and replacement all has been long and slow and we are not really done yet. Insurance covered about 1/3 of the costs of the structure. All of the animals survived.  I even found a chicken buried under the wet dirt.  AND the fire fighters saved the house.  If they had been 10 minutes longer it would have been much worse. But the area now is clear and replaced.  Still more work for be done, but this property always has more work that needs to be done and really is why I like it so much. 

Medication and Recovery- At the beginning of 2016, Brandon started having seizure related health issues.  This started after the pharmacy informed us that Brandon's generic medication for his seizures was on "back order". We started using a different manufacturer and within a few days Brandon started having symptoms ranging from his eyelid "flopping", to an aura, then a full blown seizure.  We changed to a new generic after some study on his generic options.  There were over 25 different manufacturers for this drug.  Really there is no way to determine how closely one drug is compared to the name brand.  On the third generic drug, Brandon started having more subtle reactions such as not wanting to leave the house, objecting to going with aides out in the community, having what I would call panic attacks, telling others he doesn't feel good and doesn't want to work.  If you look up the side effects for this drug these can be some of the more complex side effects.  It took a while to put the symptoms with the drug.  Brandon is also still recovering from his trauma he incurred in 2015, so we worked closely with a psychologist, a nurse, a pharmacist and his neurologist.  After another try on a 4th generic and having conversations with the original generic company who said the drug would no longer be manufactured, we all decided that Brandon needed to be on the name brand medication for now. This would rule out that his issues are seizure related or not seizure related. Brandon takes a liquid form of the medication and the doses and ingredients differ from the pill form.   Within 1 week of changing back to the name brand, Brandon was back to his funny, goofy, music loving self.  I think he will always have some ups and downs on this drug, especially if he doesn't get enough sleep or is sick, but this drug (Keppra) allows Brandon to be almost seizure free and maintain his own personality without the severe sleepy side effects.  I have posted for many, many, months on my fight for coverage of this drug with the insurance companies/Medicare Part D/Medicaid.  It is finally resolved after hour and hours of work at least for one year. 

Socialization - Last year while working with Brandon's network we decided to try setting up Friday get togethers with other young adults with special needs, some aides and volunteers with the goal of socialization within the community.  I started a group called the Dripping Springs Friendship Club and set up a Facebook page for people to join.  We now have 75 members and are very active with outings including bowling, yoga, art, movies, music, swimming, a farm, the zoo, RedArena, a recording studio, evening parties, making arts and crafts for a sale.  The group is all volunteer and our events are voted on by the group.  I help post the logistics of each Friday along with Brandon's job coach Mary.  For Brandon who really needed more socialization, he no longer objects to going and has started interacting with the group.  For the group, I have seen such growth and confidence.  I am so proud of each of them for getting out in the community and developing friends and confidence in their own value.  For me, when I am lucky enough to hang out with the group, it is so refreshing to be part of such an honest, innocent, sincere group of young adults.  I leave with a whole new recharge on life.  Anyone who would like to volunteer or join please feel free to contact me.   

Brandon and the Beatles - This was another big year for Brandon and his love of the Beatles.  Brandon has been going to the KOOP Radio show Off the Beatles Path for at least the last 4 years, side by side with Rush Evans (the most amazing guy with a heart of gold) and Mary (Brandon's job coach and music lover).  This year Rush has been talking to Brandon about using his IPAD communication device to speak on the show.  At first we were working with Brandon and his speech therapist for a few Beatles facts he could present on the show.  Then Rush and Brandon expanded it to a few more Beatles facts, then Rush encouraged Brandon to guest host the whole show.  For Brandon, guest hosting the whole show was a little overwhelming.  Rush wanted Brandon to explain his love of the Beatles and what the Beatles music means to him.  Working with his speech therapist for around 6 months he finally had enough programmed on his device to guest host. We worked with Brandon doing the show live, but when pressing the keys it is really too easy to miss a key or accidentally repeat a key.  We decided to lesson the stress and downloaded Brandon's verbal portion of the show.  Thanks to Mike Morgan at "The Zone" for helping us download off Brandon's device.  Rush found the right versions of the songs Brandon wanted to present and added them to Brandon's information.  On the day of the show, Rush and Brandon picked out music live during Brandon's speaking part.  I think the segment came out great and I was lucky enough to sit in the studio while the show was broadcasting.  Here is a link to KOOPs article KOOP Radio Article on Brandon .  Here is the link on the article from the company that developed the software. Article from Tobyiidynavox on Brandon .  Brandon is now working on a new guest host show to be played in the future.  He would like to interview several key people about what the Beatles music has meant in their lives.  It should be a fun show as well.  Coming in 2017.

Brandon the Advocate -  Over the years I have encouraged Brandon to speak his voice on issues that he cares about.  His first hearing was when he was on the Medically Dependent Children's Program here in Texas.  The state was planning to make changes impacting Brandon.  He went with me to testify. He testified at changes with the Medicaid consumer directed program, at the Capitol on education issues, participated in a Capitol briefing from the Children's Policy Council, educated United Healthcare on how to talk to a person with intellectual disabilities using a communication device, develop a short film on the ADA, and went with the Coalition on Texans with Disabilities during their legislative meetings. Brandon has no option not to advocate because I am so involved in disability issues from many sides.  This year United Healthcare asked Brandon and me to present at a National NACDD conference in Washington. They wanted to hear about quality indicators for persons with intellectual disabilities.  Brandon was asked to present on his person centered plan and his personal network.  I have to say Brandon did better than me because I was a little pre-occupied with him - ha. We programmed his device and he spoke about his person centered plan. He was a little sleepy at the beginning of the panel and told me he was going to sleep until they got to him AND HE DID.  But he pulled it off and did a great job. Here is a link to his presentation. 


Part of being an advocate is selecting and voting for those who represent you.  This year was Brandon's second national election.  He has really looked forward to exercising his right to vote, because some of friends have not been able to exercise their rights due to their disabilities.  I have explained to Brandon he is representing more than himself when he advocates.  So this year Brandon watched every debate both democratic and republican. He watched the general election debates.  He watched how the candidates treated people with disabilities and promoted policies concerning people with disabilities.  He probably knew more facts on each candidate than me. Before the election we sat down and went over the list of choices for all offices.  I asked him to think about what is important to him in a candidate, who supported policies for people with disabilities, who treated people with disabilities with respect and understanding. I am proud of him.  He made his choices.  The night of the election we had a few people over to his house to watch the election results.  Brandon was very excited with anticipation.  Around 9:00pm, I could tell which direction the election was headed and knew this was going to be a long night.  I told Brandon he really should go to bed and we would have the results in the morning.  We all left Brandon and his roommate.  At 2:00 am my FaceTime rang.  I immediately answered because it was Brandon.  He said "Momma I have some bad news".  I said Brandon did your candidate lose.  He said yes.  I said I would be over in the morning to talk to him about it.  The next morning I went to his house.  He said to me - "Momma everything we be alright".  I said to him.  Brandon we are just going to have to work harder to advocate for people with disabilities.  He said yes we will.  Wow is all I can say. Really proud of him.

Momma's health - I don't post about this too much.  But as you heard above, things go well as long as I am 100%.  In October I caught an awful bug, which turned into pneumonia.  Two things that worried me is that Brandon might catch my bug and his version of the bug could have been very serious.  And if I even had the energy to take care of him on the weekends.  I kept thinking this bug was going to go away in a couple of weeks, but it ended up 2 1/2 months of a pretty significant illness.  Thanks to all of Brandon's aides, Tony and my brother for helping me during the 2 1/2 months.  It has really opened my eyes to paying attention to my health - a goal for 2017.  Perhaps I should start with a check up for the first time in 10 years.   

So on to 2017.  What is clear Brandon and I will be working harder this year advocating for people with disabilities. I am proud of Brandon and it is so great to see his growth.  I really can say he is living a Good Life and as Brandon will say - there is still more. 

So I heard this from a friend today struggling with cancer and we would like to share with you.
  • Realize your every BLESSING
  • Go a little slower
  • Kiss a little longer
  • Hug a little tighter,
  • PRAISE a little harder,
  • BE safe, be careful and know that GOD LOVES YOU and SO DO Brandon and I. 
On to 2017

Thursday, November 5, 2015

A Parent's Dream

Last year as I was listening to a very long legislative hearing for work. I heard a parent of a young man with disabilities testify to the legislature that he worked hard for his son to have a good life, living in a house with other young men and he cried as he said that he was never so happy when his son told him he was ready to go home on a weekend visit.  For parents of adults with disabilities our dream is for our children to live in a place they can call their home and that place is not their parents home.  His fear was that what he had worked with his son for so long to live in a place where he calls home may change. That parent wanted to make sure the place where his son calls home would remain the same after changes in Medicaid.  I was thinking as he was testifying, that his dream for his son is like my dream for Brandon.  I want Brandon to have a home he can live in for the rest of his life and feel like his house is his home. For the last few years I have referred to my house as "the house in Dripping Springs" and his condo as "his home", so he can start thinking about his own home and what he wants from his own home.  But Brandon still wanted to come "home" to Dripping Springs even with my not so subtle hints.

About 2 months ago Brandon started living with his new roommate.  His name is Nathan.  Nathan attended A&M and has learned to work with people with disabilities.  His dream is to one day run a group home.  His personality is as sweet as Brandon, he is so eager to help and in 2 months he really has become part of the family.  The first day Brandon was going to stay with Nathan all night, he called me about every 30 minutes using Facetime asking me to come get him.  I came and had dinner with the guys and Nathan in his sweet manner starting talking to Brandon and asking him about the Beatles.  The next day only a few calls and the third day no calls.  This week (2 months later) I went over for dinner.  I needed to go to the grocery store.  We made a list of items needed at the guys house, and I asked Brandon if he wanted to come.  He said no.  I asked him if he wanted me to check on him on the video camera when he was about to go to sleep and he said no.  This was while Brandon and Nathan were sitting around their dinner table eating Pizza they had fixed.  They both looked very happy and comfortable with one another.  I still have my dream, like the father who testified above.  But, for now a little rejection feels pretty good.

Nathan and Brandon
I also have been thinking about what all young adults want when they move out from their parents, start jobs, begin to build their own lives.  What really makes a full life is having friends.  But this can be a major challenge for adults with disabilities.  Sometimes they become isolated and frustrated as a result.  So I decided to start the Dripping Springs Friendship Club.  I started a Facebook Page and invited anyone in the community to join.  The group is just starting to catch on.  We have had some great events, the highlight was Art day.  The group gets together each Friday for some activity, lunch and friendship.  So far it has been great.  Many more ideas to build on, but for now we are just getting the group out to the community, setting events each week and communicating to those participating. I have been so lucky to have people volunteer time, their services and space.  I am not sure where this will go from here but having friends is worth the effort.  More to come.
 Dripping Springs Friendship Club out for lunch
Art Day
All for now and all is good.  

Sunday, September 6, 2015

Beatles Beatles Beatles LIVERPOOL

After a few days in London we headed to Liverpool.  Brandon had recovered from jetlag and the medication adjustment and feeling really good.  Tony Maddalone did a great job getting us from the hotel to the train, then from the train to the hotel in Liverpool.  We stayed at the Hard Nights Hotel. Nice hotel right around the corner from the Cavern Club.  The hotel has Beatles music playing all the time which Brandon loved and each room has Beatles themes.  The drinks were even named after Beatles songs.  Brandon loved the hotel.  I forgot to mention that Brandon has developed a liking to "bangers" each morning in both hotels.  Once again I want to say that London and Liverpool train stations really made the trip so much easier.  They both have accessible stations and will help people get on the train.
Brandon, Mary and me being shuttled to the train with out bags.

We started our evening after arriving in Liverpool walking around the Cavern Club area with our tour guide Jackie Spencer.  

On to the Philharmonic Pub where the Beatles often hung out by the Art school.
Art in front of the Art school you will see Beatles names on some of the pieces. 
Houdlings Pub another frequent of the Beatles and Art students.  
The Dissenters etched in the bar mirror in the pub listing John Lennon and Stu Sutcliffe as one of the 4.  Lots of Beatles history here and where we met with Freda Kelly. 
 Brandon and Freda (Beatles Fan Club).  If you havent seen her documentary you should it is really great.  Good Ol Freda
Freda Kelly with the gang (Brandon, me, Kurt, Mary and Karen).Great evening talking to her about her experiences with the Beatles.  A highlight of the trip.  

The Jacaranda Club was owned by Allan Williams, who became the Beatles' first manager. The Beatles often played, rehearsed and hung out at the Jac, where Stu Sutcliffe's murals can still be seen on the basement walls. The Blue Angel was another club run by Allan Williams and was the scene of the Beatles' 1960 audition for impresario Larry Parnes which landed them their first tour outside of Liverpool, backing singer Johnny Gentle on a tour of Scotland. 
Back to the Cavern Club where we met the "Fab Forever" and they took a picture with Brandon.  
Back out with Jackie the next morning and started where John Lennon was born. 

Then where Paul (and Jackie) were born. 

Off to the Casbah Club where the Beatles had their start and played with the owner's son Pete Best.  

 These are in the garden area.

Our guide Roag Best (Pete's brother). Brandon was soooo excited in this part of the tour. A tour highlight.  Owned by Mona Best in 1959 in the cellar of the family home. The Casbah, as it became widely known, was planned as a members-only club for Best's sons Pete, his younger brother, Rory, and their friends. Mona came up with the idea of the club after watching a TV report about The 2i's Coffee Bar in London's Soho where several singers had been discovered. She decided to open the club, which was located in her cellar, on 29 August 1959, for her sons, their friends and young people to meet and listen to the popular music of the day.
The QuarrymenJohn Lennon, Paul McCartney, George Harrison, and Ken Brown—went to the club to arrange their first booking, to which Mona agreed, but said she needed to finish painting the club first. All four took up brushes and helped Mona to finish painting the walls with spiders, dragons, rainbows and stars. The group often played at The Casbah.
Another highlight of our time in Liverpool.
Penny Lane 
At the Hall where the Beatles first met - we were able to meet some locals, buy some books and pictures and saw the Brian Epstein dedication.  
On to Strawberry Fields
Brandon was particularly moved by Strawberry Fields where there once was a children's orphanage.  The new plans are for this location is to be a place where young adults with learning challenges have work opportunities.  Something Brandon is very interested in.  So it was really great to visit and learn.  Brandon wants to write Ringo and Paul and ask for support. 

"The Salvation Army have announced plans for a new training centre and cafe at Strawberry Field, the former children’s home run by The Salvation Army since 1936 and which closed in 2005, and the focus of the now legendary Beatles song, ‘Strawberry Fields Forever’.  The Church and Charity seeks to develop a training centre for work skills at the site, including opportunities for young people with learning disabilities to develop valuable skills which can enable them to gain entry to the workforce.
Alongside the training programme, Strawberry Field will also for the first time play host to visitors – with areas of the grounds and a café open to the public. Alongside the café will be a heritage exhibit which will explore the history of both The Salvation Army’s provision of child services and Strawberry Field.

There were many other sites we saw on this day such as homes where John, Paul, George and Ringo lived.  That evening we started the Beatles Festival (Beatles week) listening to Donovan.  
We started the next day with a tour of the Beatles Story.  These next pictures are from this exhibit. 

On to Alma de Cuba Beatles Festival (lunch and music).
Where we met
Yea they look real but they are not.
But Mark Hudson is at the Beatles Fest
May Pang
Peter Asher
Around the cavern club 
We also went to the homes of John Lennon and Paul McCartney now in the National Trust then back to the festival for the Quarrymen and a tribute to John Lennon.  
On the ride back to the train station we met another relative from the Sliver Beatles.  They are everywhere
Brandon feeling good after a great time in Liverpool.  
We can't thank Tony Maddalone enough for such a great trip.  You can reach him at the Beatles Pilgrimage  Tour  Brandon loved loved loved Tony.  He was so sweet with him and talked the Beatles talk.  
Loaded up and ready to go back to Austin.  What a fabulous 12 days.  Thanks to everyone who supported Brandon in his dream.