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
Saturday, August 27, 2011
Tuesday, August 16, 2011
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
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
Thursday, August 11, 2011
"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
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
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