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

Success

Brandon went to camp for 5 days and 4 nights at the Texas School for the Blind and Visually Impaired and it was a great success.  The first day I bought him to the school and the school had the sign-in process very organized with a 10 step sign in process.  It went very smooth.  Then we went off to his dorm.  Waiting in his room was the Sgt Peppers Vinyl album opened with the picture of the 4 Beatles.  Brandon grinned with happiness.  Brandon then met one of the volunteers for the week and he was a local musician who also loves loves loves the Beatles.  I knew it would probably be okay for the rest of the 5 days.  The TSBVI has really changed since I lived close by.  It has it's own swimming facility, own therapy center, own health center and tons of staff and volunteers. 

The first night and the next day were very rough for Brandon.  He called me several times screaming and crying wanting to go home.  I became very close to picking him up.  But by Tuesday I did not hear a peep.  I was worried when I picked him up that he would be a wreck.  But just the opposite.  He was singing, happy, talkative and glad to see me, but clearly happy he was there.  One of the staff asked him if he would come back next year and he said yes.  A big thumbs up.  Pretty brave of Brandon to stay with strangers without the benefit of understanding him speak for 5 days.  I am really proud of him. 

SO BIG SUCCESS.  Looking forward to next year already.  We have some transition and job news upcoming.  More later. 
Leah