Brandon's Special Family

Hannah and Brian

This past weekend one of Brandon's favorite aides got married to her true love.  Hannah and Brian married in Buda in front of their many friends and family.  As we watched the celebration this past weekend it did make me think of all the great people that have helped Brandon in his life.  He really has been truly blessed with caring, gifted people in his life.  But I was also reminded this weekend that Brandon has had a big impact on those same caring people in their own lives and I have really enjoyed seeing them all grow into the fabulous adults they have become.  Hannah is a speech therapist working with kids like Brandon in Houston.  She really worked with Brandon as a student at UT on his communication device and his speech as she learned all about speech pathology at UT.  But she also was unafraid of Brandon, treated him like a little brother, shared with him many adventures that he loved and of course supported his love of the Beatles.  Hannah and Brandon made a Christmas video which one day I will post.  It will show you how they were so close and how much he loves her.  Brandon was a little jealous of Brian but you cant not love Brian because you can tell he really loves Hannah.  By the time we left their wedding, Brandon has very happy for both of them.  Hannah's whole family was there.  So was Ashley, Re'Lynn and Laura.  All of them at one point also cared for Brandon during their time as students at UT.  They became our family and sometimes I felt like their mom while they were away from their own families.  Re'Lynn is now a teacher and I always knew she would be a great teacher.  She is fun, sweet, caring, patient and loves kids.  She now has two kids of her own.  Ashley works in business and now has a baby named "Hannah".  She was a frequent visitor while Brandon was at Scottish Rite and her husband Jeff has been added to the the extended Brandon family.  Ashley also treated Brandon like part of the family and took him everywhere.  Laura who was going to be a nurse told me after the wedding that because of Brandon she decided to become a physical therapist.  Of course Brandon loved seeing all of them in his own way, but it was also really great to see all these great people who have been such a big influence on Brandon's life grow up into the great adults I knew they would be. 

When Brandon started having nurses and aides help care for him I had no idea what to expect.  Brandon was a little over 1.  After an evaluation with his case manager we began to have nurses come to the house to care for him.  I had no idea how ill Brandon really was until I realized that he was receiving 24 hour care several days a week.  At the most critical time in Brandon's life we had 12 nurses coming and going each week.  It was very hard to have no privacy, to receive all that great advice from each person coming in the house and to sleep knowing that someone is up all night watching your child in your house. But after a few years I finally adjusted to the routine.  The great thing about having the great care Brandon had, is that the nurses watching him early on were on top of his illnesses, told me when to call the doctor or when we needed to call 911 and probably he is alive today because they were there.  Before Brandon had nurses one night he had a 20 minutes seizure before I realized it was a seizure, Brandon apparently stopped breathing on a regular basis at night and I was not aware of all of his medical conditions until we had night nursing.  It really is amazing that he made it through the care I gave him prior to the care he received with the nurses. 

But the bad news about having such great care is that Brandon expected someone to tend to his every need all night long and it was very difficult transitioning from nursing hours to attendant hours.  When Brandon was 7 we moved from the MDCP program for kids who are medically fragile to the CLASS program.  The CLASS program works more on attendant hours rather than nursing hours.  At 7 Brandon had finally stopped relying on machines for most of his care and the nursing services were manageable.  I decided that it was time to try attendants.  It was very hard because I had to do the evening hours myself.  This meant I had very little sleep each night.  Brandon was so trained for 7 years that someone would care for all of his needs at night that it took several years to retrain his night habits and to not be scared without the care.  I slept on Brandon's floor in his room for almost 1 year trying to get him to sleep in his own room.  Still today Brandon will still sneak into my bed in the middle of the night, usually after he has a seizure or he has choked. 

Brandon and I loved all the nurses that cared for him and we see many of them when we have many medical appointments and hospital stays throughout the years.  But Brandon and I have also loved the many attendants that have been part of his life.  Our first attendant Clarissa worked endless hours with Brandon on saying each syllable and sound, pretended that Brandon was the weatherman when Brandon was interested in the weather and worked with him on his communication device.  She also worked with Brandon to help him learn to eat.  She now works as a speech therapist for a school district. Ashley G worked with Brandon on his school work and eating.  She is now a social worker and has a son.  She also became a part of the family.  Will listened endlessly with Brandon to music and never tired on Brandon's music obsession.  Brandon had many UT students work with him while he was home schooled and tirelessly worked on his communication device, math, reading, and science.  Kristin worked with Brandon on homework when he started back to school and started him in special Olympics.  She helped Brandon during both foot surgeries and recovery and came with us to Dallas during his hospital stay.  Brandon became part of her family on many occasions.  Ross has been Brandon's aide for the last few years and they share his love of music.  Ross has been working with Brandon while Brandon worked at jobs in the summers and all those guy things I cant do with Brandon.  Brandon loves Ross speaking Spanish to him and Ross loves practicing Spanish on Brandon for one of his classes.  Jeff also works with Brandon and has also been his aide at school.  He knows Brandon well and challenges him to show everyone how smart Brandon really is.  I could go on and on but I cant cover everyone and everything here. 

Almost all of the aides tell me that Brandon and him/her have a special bond.  I always see that but I think the special bond is really Brandon letting them into his world.  Because Brandon really won't give you any attention until he knows that you deserve that attention in his book.  Once you meet his tests, then that special bond happens.  Not everyone meets the test, but if you are lucky enough to meet that test, then I do believe Brandon will have a lifetime impact on those who have.   Everyone who has worked with him learns the very special gift that many people never learn in their lifetime about what is really important in life.   It is in his favorite Beatles song.  "All you need is love" and love and family is what Brandon is all about, with some Beatles along the way.  So thanks to all you special people who have helped Brandon over the years.  You know who you are. 

 Hannah and Brandon

 Ashley, Jeff and Brandon

 Laura and Brandon

Re'Lynn and Brandon

 Ross, Brandon and Uncle Jim

Brandon and Kristin at Scottish Rite

Love it- From other other wonderful parents with inspirational reminders.

Respite Weekends

This summer I participated in the Texas Parent to Parent conference in San Marcos.  I decided to spend the two days in the "Transition Summit" oprtion of the conference which included many topics on transition facilitated by Rosemary Alexander (former AISD).  Rosemary and I have known each other since Brandon was 1.  She worked at the parent organization associated with the ARC of the Capitol Area which then formed into the Texas Parent to Parent.  As many of you know, I was on the Board of Texas Parent to Parent for several years.  After serving on many boards over the years I decided to only give my time to those I really believe have a direct impact on the population they serve.  I really believe Texas Parent to Parent serves their population, including this parent. 

I presented a couple of topics at the "Transition Summit" on networks and SSI.  But I also did a great deal of listening and thinking of ideas on how to move forward with Brandon's transition and to try my best for Brandon to have a good life.  In Brandon's plan for the future, he said that he would like to live independently with a room mate or his wife (scary).  This is his goal in five years from when we developed the plan.  After talking to Rosemary and the group, I realized that I needed to start letting go.  I needed to allow Brandon to have some independence away from me.  I have worked into Brandon's plan of care 1 weekend a month of respite.  Brandon stays at the condo one weekend a month with a choice of two aides who have worked extensively with Brandon.  I will be away from the condo for the weekend. 

Last weekend was our first respite weekend.  I have to admit that I do travel for work on occasions for short periods of time and occasionally I take a vacation trip about every other year.  These are all where I am away and Brandon is in school of has other activities.  Very rarely do I have anyone care for him on the weekends.  Worse than that, this is the first time in 18 years I have taken a whole weekend where I am staying at home.  However, this is what Brandon wants for the future and having baby steps to land there seems like the best way to begin the transition. 

For this last weekend I stayed at the condo and Brandon stayed in Dripping Springs with Ross, one of his aide's.  They went to the movies, had pizza, stayed up late and watched videos.  I didn't know what to do with myself.  I kept thinking that Brandon was here in the condo and for Friday night and Saturday I didn't leave the condo.  Finally, I flung myself out the door convinced that it was okay to at least get some groceries.  Luckily, Saturday night some friends had a dinner party and then I went out to listen to some music with another friend.  It all seemed so foreign to me not having to rush home to relieve someone.  I realized this transition even on the weekends may take me a while to make the adjustment, maybe more than for Brandon. 

The weekend was cut a little short because I have friends from Bastrop moving into the Dripping Springs house after they lost everything in the fire.  They have 6 dogs and a cat and were staying in a hotel.  Two of the animals have burns and they just wanted everyone back together while the figure out what they want to do next.  So my friend Kate, Ross, Brandon and I madly tried to clean up the house enough for the entire family (including dogs and cat) to move in on Monday.  Believe me, I was ready for the weekend to end on Sunday. 

I am already planning the next respite weekend and I am tyring to come up with something where I am already out doing something I cant when I am with Brandon.  Baby steps for us both. 

I also signed Brandon up for "We are the Chorus".  I have been watching "We are the Chorus" for some time and love the spirit of the group. http://wearethechorus.org/  Brandon went to their first rehersal and loved it. I really wanted Brandon to start doing some social activites to hopefully develop friends.  "We are the Chorus" is right down the road from us so it seemed like a natural fit. 

Brandon has been seizure free for two weeks, his lungs have cleared and he really likes school.  Right now - life is good.
More later.
Leah  

Release from Scottish Rite



Dr Birch and Brandon 2007



Today we went to Scottish Rite in Dallas for a re-check of Brandon's feet after surgery and a check on Brandon's back.  We stayed last night in our favorite hotel "The Warwick" and as usual they catered to our every need.  Great room, great service and great price thanks to Expedia. 

It has been a long road of going back and forth to Dallas as we tried to determine why Brandon's feet had become worse and to track the progression of Brandon's scoliosis.  I started this blog to keep track of our trips and Brandon's progress.  I originally thought we would go to Dallas, be told that Brandon would need surgery on his foot, have the surgery, return home and it would be over.  But that is not how going to Scottish Rite works.  I want to remind everyone that Scottish Rite is free to all those kids who qualify for services, and qualification is about the medical condition and the referral from another physician.  Really it is not like any other hospital I have been to or Brandon has been in.  The minute you walk in, it just feels different.  No one asks for your insurance info, money, co-pays and referral like you usually are asked at any visit.  It is all about the care of the kids without the pressure of the finance.  Having worked in health care I am always curious about how this actually works, but I can see there is a very strong community base that supports the hospital.  There is almost as many volunteers as there are paid staff. 

During first year the doctors knew Brandon needed surgery on his foot and told us that the surgery would be a major surgery that would rebuild the foot.  I really didn't understand what that meant but I knew it was going to be intense and complicated.  Unlike the other physicians I had consulted on Brandon's foot, the physicians at Scottish Rite wanted to know the cause of the condition (cavernous foot).  The condition often is associated with more serious medical issues.  They wanted to determine if Brandon had any of these conditions before they repaired the foot surgically.  We spent an entire year in search of a diagnosis.  This is also when we all agreed that Brandon probably does not have cerebral palsy but is perhaps undiagnosed.  We never were able to find a label for the foot condition but it was not for lack of trying.  Finally before surgery, Brandon had a test that measured the impact of the condition on the rest of the body.  This is all electronic and run through the computer.  It is very high tech probably similar to those type tests used on athletes.  The results showed that there was already impact on other parts of the body having to accommodate for Brandon's foot and it was decided to perform the surgery.  Brandon had two very complicated and painful surgeries with very long recovery time. 

But it was all worth it.  Without the surgery Brandon may not be walking today.  With the surgery, Brandon is walking better than he has in many years and for longer periods of time.  The blue team and Dr Birch just did a great job as he says every time we visit.  We all marvel at how bad the foot was and how great the foot is now as a result of this surgery. 

In addition, Brandon has gone from a 30% curvature in his spine (Scoliosis) to 44%.  But the 44% has remained consistent for 2 years.  That is good news.  Will Brandon need surgery on his back in the future?  No one really knows, but for now he is doing great.  So there was a celebration at the hospital today when Dr Birch said "Brandon you are released from Scottish Rite".  Brandon immediately said Dr Birch give me a hug and he ran over to him and gave him a big hug, then he went to our favorite nurse "Emily" and kissed her hand.  I have to say there was not a dry eye in the room.  That is how great they really are because they all do care. 

For me this is great news that we don't have to drive up to Dallas again for another visit, but also scary because Brandon has now aged out of Scottish Rite.  If he does have any problems in the future they will help find an adult specialist for him to see, but I don't think it will ever be as loving and caring as what we received there.  This is also Scottish Rite's 90th birthday.  I know why they have been around as long as they have and we will miss them.  So leaving was a little bittersweet. 
More later
Leah

I Had a Great Day Mom

Well, we have thought positive thoughts, had many prayers from many of you and tried not to stress over Brandon's latest lung problems.  I have to believe all of those helped.  This week Brandon had a lung scan and his lungs have cleared.  We started an aggressive medication regiment and CPT on Brandon's back and it made a big difference.  Brandon sounds great and he is very happy. 

Brandon started school this week at Westlake High School's Adult Transition Program.  It started out a little rough with several seizures.  I think the school, Brandon and me were not quite prepared on what to do if Brandon has seizures out in the community.  But by the end of the week the seizures ended.  Brandon will be working in the afternoon's, working on grooming first thing in the morning and working out at the YMCA in the mornings.  Brandon really loves this program so far and today he came bursting into the condo and said "I had a great day mom" very loudly, with a big thumbs up and a great big smile on his face.  I have to say I had a great day today as well.  After the bus picked up Brandon, I walked on the trails behind our condo in the Barton Creek Greenbelt, worked from the condo and was greeted in the afternoon with a very happy son.  You really can't have it much better than that.  I wish for many more great days in the future. 

More later
Leah

Geez Enough Already

Well it isn't very often that I say enough already, I feel sorry for me and Brandon or geez how much more.  But I am really just about there today.  Of course it does not help that the cat does not like the condo, the dog is barking and whining, Brandon keeps asking when we are going "home"and that Brandon continues to have seizures. But this is a little more than I want to deal with. 

Friday I asked Brandon's PCP to do a chest x-ray on Brandon in anticipation of Brandon's visit with his pulmonologist, Dr Fullmer.  Perhaps it was mom's intuition or mom's trying to plan ahead or listening to Brandon sounding congested for months, but we met with Dr Fullmer today and it turns out Brandon's left lower lobe of his lung has collapsed.  The weird thing is that Brandon is not sick and has not been sick for months, just a little congested.  This may indicate that Brandon is aspirating. Dr Fullmer is normally not very negative when it comes to Brandon, but today he went on and on about more tests, more medicine and more possible diagnosis.  I just have to say it.  IT IS JUST DEPRESSING.  ENOUGH ALREADY. 

Okay I said it.  I'm better.  We will get through it and it may be a margarita night. 
More later. 
Leah

"And Then?...."

It has been a busy summer for Brandon and me.  Brandon has worked at the Dripping Springs Library, started a personal shredding business, attended camp at the Texas School for the Blind and Visually Impaired, participated in the VSA Arts transition program, went to the beach for 1 week and has endured the entire summer with me trying to get our new condo liveable. 

This is our last week in Drippping Springs where Brandon has lived most of his life.  My brother (the one who lives in Italy) is moving into our house in Dripping Springs and next week we move into the condo one week before school starts.  It has been a long summer or gutting the condo and repairing it.  Last week we stayed at the condo one night.  Brandon loves loves loves baths.  There is only one bathtub at the condo.  Knowing that Brandon loves baths, I brought all his favorite bath items to the condo.  Brandon jumped into the bathtub. I started the water, put all his bubble bath stuff on him and in the water and he was very happy.  I went into the bedroom and in about 3 minutes I heard the water turn off.  I went to check on him and there was no water coming out.  I asked him why he turned off the water and then realized that he did not turn off the water, the water just stopped.  The bathrooms are really barely usable because of all the construction.  So I am hoping by the weekend almost everything will be working. 

After we left the condo this week, I told Brandon that we were not coming back to Dripping Springs to live after this week and we would be living at the condo.  Brandon's as usual insightful response was "and then?".  I had to laugh because for the first time in a long time I could not answer what will happen after we move into the condo or the "and then?" of the future.  I just know that for right now this is the best place for Brandon.  It may drive me a little crazy because I love working in my garden and being outside my house, but I will adjust with walks to Zilker. 

The whole point of this move is for Brandon to learn how to live as independently as possible, learn how to find his place in his community and to find a meaningful job where Brandon can be proud of his accomplishments and build relationships.  It is really tyring to build a good life for Brandon to be the best he can be just like all of us want a great life. So I am not really sure yet how to answer the "and then?" but hope Brandon enjoys trying to develop his own "and then?" for now and in the future. 

On another note, Brandon has been having more seizures and I have been able to see them directly, learning more about them (from the five books I am reading), and trying to determine how these will have an impact on this life, especially this next phase of his life.  I have determined that most of Brandon's seizures happen at night while he is asleep and in the morning after he is awake (around 9:00 to 9:30).  The interesting thing is that they also happened at school around the same time.  I think Brandon's seizures are worse in intensity than before.  Because of this I am trying to get Brandon into the Blue Bird Clinic at Texas Children's for a second opinion.  Brandon needs to get the seizures under control.  The more he has, the worse they can get. 

I am writing this because I want everyone to understand the issues surrounding transition, even medical transition for kids who have become adults.  I am not sure if the Blue Bird clinic will accept him because he is now 18.  He was already turned down by Scottish Rite's neurology clinic because he was not an established patient for that clinic and he is not 18.  There is really not a great plan for kids like Brandon as they transition into adulthood for medical care, especially in Austin.  He is actually very lucky because his pediatrician will continue to see him until he is out of school (22) and his gastroenterologist will see him indefinitely.  But that is because there really is no one to treat him otherwise.  So I will update everyone as will try to find some great second opinion options. 

So on to our move.  Brandon does have some exciting work opportuinites coming up so I will update as those progress.  I will also give an update on Brandon's network. 
More later
Leah