Monday, September 26, 2011
Thursday, September 15, 2011
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
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
Thursday, September 8, 2011
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
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