Today Brandon and I went back to the Scottish Rite Hospital for a check on the second surgery Brandon had on his left foot. Brandon had some set-backs from this surgery because of the H1N1 illness at Dell Children's. Brandon's cast was removed and replaced several times. However, it didnt seem to have much of an impact. Today, Dr Birch and the Blue team gave Brandon the thumbs up on his left foot and have allowed Brandon to go brace free. They also said we will not have to go back to Scottish Rite for 6 months.
Brandon started clapping and hugged everyone in the room when he found out that he did not have to wear the brace anymore and I almost did the same when I heard we did not have to come back for 6 months. Way to go Brandon.
We will watch the right foot for now and hope it does not get worse. I dont think I could handle another hospital stay this year.
Also, on a total pamerping note, we stayed at the Warwick Hotel a few blocks from the hospital in Dallas. I love that place. We have stayed there several times over the last 2 1/2 years and everytime it has been fabulous. I can sometimes get a great rate on expedia. If you ever go to Dallas and want a little luxury, I totally recommend the Warwick or Hotel ZaZa. Brandon and I have stayed in almost ever hotel downtown and they are the best. Last night they took us to the new Hard Rock Cafe where they are having a John Lennon fundraiser (hunger) and Brandon was in heaven. I was just in heaven in the hotel. It was a nice way to spend the last two days full of doctor visits. It makes it that much more bearable.
The day before Brandon had a clinical trial visit at Dell Children's. The appointment was over two hours and I forgot my purse. So we had to drive back very south and then turnaround and head for Dallas. That landed us in rush hour traffic. But pulling up to the hotel made it all better. And finding out the next visit is in 6 months is even better.
Now back to Brandon's transition. More later.
Leah
Thursday, November 12, 2009
Monday, November 2, 2009
A New Focus
Every year for many many years I try to determine what Brandon really needs to be successful for that year. Because in the big picture a parent could spend every day and night trying all the therapies, educational methods, wellness and health recommendations and still there would not be enough hours in the day. In the beginning when Brandon was born, I tried to do everything. Feeding, talking, therapies (speech, occupational, physical, swimming, massage, etc.)sign, new health and wellness recommendations. We were all exhausted, especially Brandon. I finally decided that yes many things are important, but what was really important that year? I would concentrate on that topic for one year and move to another the following.
Over the years it has been home-schooling, trying to get Brandon to eat, trying to get Brandon to walk, trying to help Brandon communicate, the list goes on. Last two years were the years of trying to find Brandon's true diagnosis and trying to correct some of his health conditions especially his feet. I know they are sound overwhelming.
But for me this year will be the most overwhelming year of them all. In December Brandon will turn 17 and we will be one year away from becoming an adult. For a child with special needs that is very significant. He will be able to make his own decisions about his health, money, school etc. that I am not sure he can really comprehend. We will need to decide about guardianship. I will need to deal with his child support. We will need to decide if we will apply for SSI assistance for him to become more self sustained as an adult. We will need to decide if we will apply for Medicare. Brandon will have 3 more years after 18 in the school system and then his assistance will be limited. We will need to decide what he wants to do as an adult, where he will live, who will be a part of helping with these decisions and what will happen if something happens to me. These are all really hard decisions. They are complicated decisions and they require a great deal of research before Brandon reaches 18.
So this next year I will began to blog about Brandon's transition to adulthood and what we learn along the way. I am interested in setting up a Board to work through this with me and to begin support of these decisions in a group. So I will research the best way to set this up. I will go over Brandon's special needs trust and changes that will be made and I will learn and report on what is needed to apply for SSI, guardianship and Medicare. Also, I was prewarned that when Brandon turns 18 he will lose Medicaid and I will have to go through a process to restore his benefits. So I will report what I learn about this as well. Brandon is currently in the CLASS waiver program.
So I am about to start the walk through the journey of change with Brandon. Feel free to walk with me and Brandon and hopefully learn as we go through this journey.
Next week Brandon and I travel back to Dallas to hopefully have the doctor's check his current brace. It is working well, but I think he may be ready to walk without the brace or possibly a flexible brace. He is doing great since returning to school. I am so greatful for all the support from everyone during his scary hospital stay. More soon.
Leah
Over the years it has been home-schooling, trying to get Brandon to eat, trying to get Brandon to walk, trying to help Brandon communicate, the list goes on. Last two years were the years of trying to find Brandon's true diagnosis and trying to correct some of his health conditions especially his feet. I know they are sound overwhelming.
But for me this year will be the most overwhelming year of them all. In December Brandon will turn 17 and we will be one year away from becoming an adult. For a child with special needs that is very significant. He will be able to make his own decisions about his health, money, school etc. that I am not sure he can really comprehend. We will need to decide about guardianship. I will need to deal with his child support. We will need to decide if we will apply for SSI assistance for him to become more self sustained as an adult. We will need to decide if we will apply for Medicare. Brandon will have 3 more years after 18 in the school system and then his assistance will be limited. We will need to decide what he wants to do as an adult, where he will live, who will be a part of helping with these decisions and what will happen if something happens to me. These are all really hard decisions. They are complicated decisions and they require a great deal of research before Brandon reaches 18.
So this next year I will began to blog about Brandon's transition to adulthood and what we learn along the way. I am interested in setting up a Board to work through this with me and to begin support of these decisions in a group. So I will research the best way to set this up. I will go over Brandon's special needs trust and changes that will be made and I will learn and report on what is needed to apply for SSI, guardianship and Medicare. Also, I was prewarned that when Brandon turns 18 he will lose Medicaid and I will have to go through a process to restore his benefits. So I will report what I learn about this as well. Brandon is currently in the CLASS waiver program.
So I am about to start the walk through the journey of change with Brandon. Feel free to walk with me and Brandon and hopefully learn as we go through this journey.
Next week Brandon and I travel back to Dallas to hopefully have the doctor's check his current brace. It is working well, but I think he may be ready to walk without the brace or possibly a flexible brace. He is doing great since returning to school. I am so greatful for all the support from everyone during his scary hospital stay. More soon.
Leah
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