Updates, anyone?
Health Update: Wow. Where do the updates start? Over the past month, Travis has had a spinal tap, in addition to two other trips for blood tests. His symptoms are pretty much the same as last month. The worst of it includes: chronic lack of sleep, intense brain fog, facial grimaces, full body twitching, stuttering/difficulty communicating. So, let's get to the news.
We found out that Travis doesn't have Huntington's Disease. (YAYAYAYAYAYAY!!!!!)
We found out that Travis doesn't have a post-infectious autoimmune disease. (happy dance)
We found out that Travis doesn't have Wilson's Disease. (awesome, awesome, awesome)
Through out the past few weeks, we've had moments of relief to know what it was not, but we also had moments of frustration, because we still don't know what is wrong and Travis has had more bad days than good days.
Dr. Renner met with us last Thursday. He told us that in multiple tests, it shows that Travis has untraceable evidence of Copper in his body, which in medical terms means he is "acupremic." Dr. Renner emphasized that this is not just rare, but very rare. He also said that it is most likely genetic. Unfortunately, there are no specialists in the area, or lab equipment that can do the tests that we need. We are being referred to Mayo-Rochester Clinic (Minnesota) to work with a team of doctors, namely a hematologist and neurogeneticist. They should be able to help find the cause of no copper and how to treat it.
At this point, we don't know when we will go to the Mayo Clinic or how much it costs. More information will come after they review Travis's medical records.
Why Travis is my hero today: Travis and I are opposites in a few things. I don't read much. I rarely find a book that I want to read. I am a SLOW reader and have a difficult time focusing on the words instead of a million other thoughts in my brain. I much rather did puzzles and played games. When I was a kid, I would write book reports based on the first and last chapters; I never actually read a book in high school.
Needless to say, Travis is the opposite. Travis LOVES reading. His Kindle is more well-used than the light switch. No joke. He told me that when he was a kid, he would read books late into the night by flashlight. Not a shock. He reads thousands and thousands of pages and has a wish list of many other books he wants to read.
I must say that when he found out that I never read Harry Potter, he was SPEECHLESS. He said he would make sure I read the books some time in my life, even though I didn't care.
This past week, Travis started reading a chapter of Harry Potter to me each day (British accent included). Today, from the moment I woke up, I have been so excited for the next chapter. I love the story and the fun voices he uses for each character.
He is my hero, because even though we are beaten down day after day, he finds a way to keep me going, keep me alive. There are so many reasons for us to be depressed, sad, overwhelmed, anxious, and exhausted. Yet, he always finds a way to brighten my day and get me out of mundaneness of life. I love that he thought of reading together. I love him reading Harry Potter to me and it gives me something to look forward each day. I am so lucky to have Travis in my life. He is definitely my hero today.
We found out that Travis doesn't have Huntington's Disease. (YAYAYAYAYAYAY!!!!!)
We found out that Travis doesn't have a post-infectious autoimmune disease. (happy dance)
We found out that Travis doesn't have Wilson's Disease. (awesome, awesome, awesome)
Through out the past few weeks, we've had moments of relief to know what it was not, but we also had moments of frustration, because we still don't know what is wrong and Travis has had more bad days than good days.
Dr. Renner met with us last Thursday. He told us that in multiple tests, it shows that Travis has untraceable evidence of Copper in his body, which in medical terms means he is "acupremic." Dr. Renner emphasized that this is not just rare, but very rare. He also said that it is most likely genetic. Unfortunately, there are no specialists in the area, or lab equipment that can do the tests that we need. We are being referred to Mayo-Rochester Clinic (Minnesota) to work with a team of doctors, namely a hematologist and neurogeneticist. They should be able to help find the cause of no copper and how to treat it.
At this point, we don't know when we will go to the Mayo Clinic or how much it costs. More information will come after they review Travis's medical records.
Why Travis is my hero today: Travis and I are opposites in a few things. I don't read much. I rarely find a book that I want to read. I am a SLOW reader and have a difficult time focusing on the words instead of a million other thoughts in my brain. I much rather did puzzles and played games. When I was a kid, I would write book reports based on the first and last chapters; I never actually read a book in high school.
Needless to say, Travis is the opposite. Travis LOVES reading. His Kindle is more well-used than the light switch. No joke. He told me that when he was a kid, he would read books late into the night by flashlight. Not a shock. He reads thousands and thousands of pages and has a wish list of many other books he wants to read.
I must say that when he found out that I never read Harry Potter, he was SPEECHLESS. He said he would make sure I read the books some time in my life, even though I didn't care.
This past week, Travis started reading a chapter of Harry Potter to me each day (British accent included). Today, from the moment I woke up, I have been so excited for the next chapter. I love the story and the fun voices he uses for each character.
He is my hero, because even though we are beaten down day after day, he finds a way to keep me going, keep me alive. There are so many reasons for us to be depressed, sad, overwhelmed, anxious, and exhausted. Yet, he always finds a way to brighten my day and get me out of mundaneness of life. I love that he thought of reading together. I love him reading Harry Potter to me and it gives me something to look forward each day. I am so lucky to have Travis in my life. He is definitely my hero today.
I love reading the updates on how you two are doing. Does Travis have some sort of go-fund-me page?
ReplyDeleteWe don't have a Go Fund Me page. We have been able to handle the expenses so far. Thanks for asking!
ReplyDeleteWell, how is Harry Potter?! Not to mention I can hardly bare the thought of you as my student, never reading a book?!!?! Wth!
ReplyDelete