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. 

 

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. 

 

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





A Brandon update

Since my last post, Brandon had his 20th birthday.  Brandon loves this time of year.  It starts with my birthday around Thanksgiving, then Thanksgiving, Brandon's birthday and Christmas.  Brandon does love getting presents, but he also loves all the traditions we have developed over the years and having friends and family around.  We invited Brandon's network, family and a few friends to celebrate Brandon's birthday this year.  It ended with a little impromptu music jam including a little Beatles music. 

Brandon's 20th birthday had special meaning for me.  When Brandon was 8 he had a swallowing accident at school.  EMS was called as was I. We both raced to the school as the teachers and nurses performed CPR.  By the time I got there Brandon was breathing, but had obviously aspirated on food.  This led to a long year where Brandon could no longer take in food or liquids through the mouth.  During the process of meeting with doctors and determining next steps, one of Brandon's doctors told me it was unlikely Brandon would live until age 20.  This was devastating to hear, especially for a mom trying everything for her son to be as healthy and happy as possible.  I took Brandon to several specialist to ask about this prognosis and those I consulted did not agree or disagree with this doctor's opinion.  I decided to ignore the prognosis and move on.  But it has been in the back of my mind for 12 years.  So, it was especially sweet to celebrate Brandon's 20th birthday this year and even more special because Brandon is healthy and happy right now. 
 
We then moved on to Christmas.  Brandon was very excited because we had planned to spend the two weeks he is off from school in Dripping Springs with me.  He was ready for Christmas break and a little mom time.  Plus, Brandon still believes in Santa and he was looking forward to a Beatles Christmas.  We had a great Christmas and Santa came through with those Beatles DVDs and books.  Both my mom and Aunt were able to come over and celebrate Christmas.  They are 91 and 92 and still happy to get out with the family.  My brother Jack came in from Italy and my brother Jim was here as well.  We drove around the Hill Country looking at Christmas lights, watched Christmas movies, listened to a ton of Christmas songs especially Bing Crosby and had a really nice Christmas. 

Our friend Kate and Brandon

 



Jim and Brandon at Christmas

But we were missing Brandon's brother Patrick who is now in Iraq for the next year.  We are hoping he is safe and careful.  And we are very proud of all the work he does with the Air Force.  Care packages will be in his near future. 

A little medical update - We received the results of the sleep study.  Brandon had a normal sleep night for him.  He slept as normal for him until he awoke around 5:00 am.  Brandon's neurologist read the sleep study results and was very surprised.  Brandon did not have one abnormal breathing/sleep/apnea episode the entire night.  Not one.  This is surprising since Brandon has low muscle tone in the trunk of his body, has had seizures the last couple of years and frequently can have congestion.  The neurologist said that it is normal to have up to five episodes in a night.  That is considered normal.  If he and I had a sleep study we would have at least one episode.  For Brandon to have "0" episodes is actually very unusual, but good.  However, Brandon did have an abnormal sleep pattern.  There are several stages of sleep, This is a good overview of the stages.  http://psychology.about.com/od/statesofconsciousness/a/SleepStages.htm.  Brandon went through stage 1 through 4 during the night with some awake episodes which is normal.  But Brandon never went into REM.  Again this was a normal night for Brandon.  I asked the doctor if maybe he just woke up or stopped himself from going into REM.  The doctor said that was impossible and that it is the brain that decides which stage a person is in sleep.  A person cannot alter those patterns.  It also means that Brandon does not dream and it might explain why Brandon had no apnea.  Apnea usually occurs during REM. It also means that Brandon does not organize his thoughts each night.  I am going to read more about sleep patterns, but the results were interesting to me.  Brandon has never had a full night's sleep since he was born and this helps explain why.   AND there is really no treatment. 

Brandon is also undergoing genome testing with the latest tests available in the quest for a diagnosis.  The latest test will look at all of Brandon's genes to determine possible diagnosis, future diagnosis and any carrier information.  I wasn't going to do any additional tests, but Brandon had more chromosome tests come back with abnormal information.  After meeting with Brandon's geneticist, I decided to move forward with the testing. We won't know the results for 4 months. 

As many of you know, Brandon is seizure free since May 2012.  He is also off 2 of his three seizure medicines.  The seizure medicine Brandon is on is Keppra.  Although we like the medicine, it has no liver damage side effects and Brandon has been seizure free; there are a few side effects we are seeing.  Brandon has started to pace (moving regularly) and he is grinding his teeth.  In addition, Brandon is losing weight.  About 2 pounds a month.  Brandon had gained weight while having seizures and on the other medicines,  He is now at a good weight for his size.  But we will have to monitor to make sure he does not lose too much more.  These side effects are all so much better than having uncontrolled seizures.  I wanted to mention this in case someone is thinking of changing seizure medicines. 

We are also working on Brandon's transition plan and I will have more info on this in my next post.  Thats all for now. 

Leah

A Brandon and Patrick Update

Well it has been a while since my last post.  I have caught up on my sleep after coming back from Europe and in full work and Brandon mode.  I miss hanging out on the French Riviera.  What a life that would be.  Ahhh.  But back to Austin.  It has been crazy busy here.  I have been traveling some for work and starting the legislative process of reading all those darn bills.  
Brandon is now in month 4 of transition. In the weeks leading up to the trip to Europe, Brandon was very emotional about me leaving for 11 days with many days of crying and calling his mom.  It was really tough leaving.  But once I left and with a few text messages, Brandon did fairly well.  He was glad I was back and we were back to our routine.  The routine is for Brandon to stay at the condo during the week with Chris his companion while he is at school, and to come to Dripping Springs with me on the weekend.  This is going really well.  Brandon is happy, has not been emotional, and does not object to coming to either place as long as he knows in advance the schedule.  We all spend a great deal of time working on making sure we all have the same schedule.  Brandon has an IPAD and we have loaded Cozi on all of our devices to have a family calendar.  I am learning all his new apps.  I have also downloaded Autismate to see if we can use this app for modules helping Brandon with daily activity chores.  This will be my Christmas break project.  I wish I had a young computer geek hanging out here to help me.  Oh well.  
More good news!  With the help of Brandon’s transition team at UT, Brandon will start a new job at UT in January.  This is great because it meets many of Brandon's work requirements.  He will help sort and deliver mail as his main job and will get a great deal of socialization.  A Win Win for everyone.  We are working hard on Brandon interacting with other people, saying greetings, asking how the other person is doing, etc.  UT has a great environment for Brandon to develop job skills while working on socialization with peers his own age.  He will still continue one day at Seton and we will try to still work at the Beatles Show at Koop.  

Brandon and I went to Dallas over Thanksgiving to see Brandon’s brother Patrick.  I posted on the blog on 10/4/10 about Brandon’s brother Patrick.  Patrick is a really special kid.  Of course I still call him a kid even though he is 30.  Brandon really loves Patrick and so do I.  The day before I left for Europe, Patrick found out that he would be leaving to go to Iraq for military duty for a 1 year tour.  Of course Brandon, Patrick’s mom Peggy and I are all concerned, but we all support Patrick and his commitment to serving his country through the Air Force.  Peggy threw Patrick a great going away party in Dallas and we drove up to be with Patrick.  Brandon has his own way of communicating with Patrick.  I think they both just “get” each other and for Brandon he just wants Patrick near to him.

Patrick and Brandon chillin'

Brandon was glad to see Patrick and did not complain about the drive.  Patrick is also a major Dallas cowboy fan.  I wanted Patrick to have a great week with his mom and his girlfriend Kaitlin.  The company I work for (UnitedHealthcare) managed to get Patrick and Kaitlin great seats for the Thanksgiving Dallas game and I got Patrick, Kaitin and Peggy special passes for the pre-game (the day before) taping for the Red Kettle fundraiser and rehearsal of Kenney Chesney’s half-time show.  They all had a great time and I think it took Patrick’s mind off Iraq at least for a few days.  Here are some pictures.

 Patrick and Kaitlin

Patrick and Kaitlin with Charles Haley (I had to look him up)

We are all so proud of Patrick and hope he is safe during his tour.  I see lots of care packages in his future.  Patrick we love you and already miss you.  Take care of yourself. 

More later

Leah

Transition Week Nine

We are now headed into week 10 of Brandon's transition.  The last few weeks have been crazy.  On Oct the 12th I left Austin for Europe for an 11 day vacation to see my brother and to visit Europe.  I have been wanting to go to Europe to see Jack for several years, but leaving for that long seemed impossible.  I just decided this summer with the new transition plan in place, that I just needed to put it on the books.  October was a great month because it is prior to the legislature bill filing, Brandon would be many weeks into his new living arrangement and it is good timing for work.  But leaving for 11 days was not as easy as I had imagined.

About two weeks prior to leaving, Brandon started having crying episodes and begging me to please not go.  This lasted up until the night before I left.  It was very hard emotionally for both of us.  I explained to him that this was not much different than my business travel, but I was traveling a little further.  We even looked up Beatle information in France and Italy to show him how the Beatles traveled.  Nothing really worked.  I texted Brandon some from France and Italy and texted Chris and Ross.  Brandon really did very well while I was gone and much better now that I have returned.  So we passed this hurdle.  But these things sometimes come in threes or fours.

The night before I left for Paris, I received a call from the assistant living facility where my mom resides (3:30 in the morning).  They were concerned that my mom was not doing well and wanted us to come over and check on her.  It was 3:30 in the morning prior to me leaving for the airport at 8:00 am.  The "we" and "us" in this instance is me and my bother.  I called my brother and asked if he could go over to the facility.  He did.  He got my mom back into bed, but I knew by the end of the weekend she may be hospitalized and Jim would be handling this alone.  This is the bad thing about having a small family.  Sure enough she was hospitalized and had surgery for removal of a tumor in her intestines.  She is 91 so we were not sure she would survive.  She has done fairly week and yesterday we moved her to a skilled nursing facility.  So far so good,  Jim was a rock star brother and son last week. 

When I landed in Paris, my phone rang and it was my Aunt Sue.  She has no kids and Jim and I care for her as well.  I could not get a signal.  I let Jim know and it turned out not to be anything major.

On Thursday prior to leaving, Patrick (Brandon's brother) called me.  He had just received confirmed orders that he is leaving for Iraq for 1 year service.  He is in the Air Force.  I did not want to tell Brandon until I returned.  That would have been too much for him.  Brandon loves his brother and Patrick leaving for Iraq will be difficult for Brandon.  He understands the risks associated with Patrick's travels.  This has been hard for everyone, especially because 1 year is very long.  But we are also proud of Patrick for his service in the Air Force and his commitment to protecting the United States.  We will all miss seeing him but will stay in touch while he is there.

I left Austin with a horrible cold.  I thought I was at the end of it, but I supported the French and Italian pharmacies while I was there to help with the chest congestion and coughing.  I managed to not focus on being sick while I was there.  I went to Europe with friends Kate, Meredith and Karen.  We all had a great time.  Below are a few of the pictures of the trip.

I am back now to turning my attention to those items Brandon will need to focus on for the next year to help with his independence.  We are so lucky to have a great deal of help.  Chris has a list of items we have identified for Brandon at home, UT has a list of items and the school has a list of items.  They are all related and all great for Brandon's success.  When we get the list together I will post in hopes to help other parents think of some ideas for their children transitioning.

All is good for now.

Leah

PARIS FRANCE PICTURES

 NICE FRANCE AND SURROUNDING AREAS PICTURES

ITALY PICTURES

PERINALDO ITALY

 

TRUFFLE FESTIVAL ALBA ITALY

LA MORRA and OTHER ITALY