Journal entry by Dalaina LaMance —
A much overdue update on our journey...it's been a trip!
Since Andrew came home in June, he has been working very hard at his recovery. A therapist told us that, "recovery is a full time job" and boy was she right! A typical week for Andrew includes; physical therapy, speech therapy, blood work to check his INR (because he's still on a blood thinner), doctor appointments sprinkled in through out the month (he has two neurologist, a rehab doctor, psychologist, hematologist, and primary care doctor!), plus monthly infusions. At home, Andrew works on building his strength, balance, and memory. He is OVER his starting weight (something he's very proud of) and looks great! I wouldn't say he's back to "normal" for a few reasons. 1. What's normal anymore, right? We will all be forever changed by this event. 2. His brain is still healing. He had some brain damage from all the seizures and meds. 3. He's still on A LOT of medication
During the week we have lots of help from family, friends, and neighbors. We are back into the full swing of school, sports, and teaching for me (I went back full time this year!). This has brought a much needed routine into our lives and a sense of normalcy. My niece, Andrew's parents, and my mom take turns staying with us during the week to help care for ALL of us! Unfortunately, we are still dealing with seizures so Andrew cannot be left home alone yet. Plus he has lots of appointments during the week he needs to get to! I'm so thankful for the help! I would not be able to work without it!
Andrew has had two hospitalizations since originally coming home end of June. He had a cluster of seizures the end of July and had to spend three nights at Valley. This is probably because they tried weaning him off of one of his seizure meds. They put him back on half the dose and then he had another break through seizure mid-September. This time he only had one and stayed in the hospital one night. They increased his meds back to full dose. He continues to be on the six seizure meds they sent him home on in June.
A couple of weeks ago, Andrew saw an autoimmune neurologist and I feel like we are now on a good track to treat his condition. Although we don't know what caused this to happen to Andrew, the doctors speculate that it's autoimmune. We use the word "speculate" because they have not found the specific antibody that has caused it. The doctor used the analogy of, "it's like treating someone who you know has cancer despite knowing what type of cancer." The hope is that if we treat the autoimmune, then the seizures will stop. To treat the autoimmune, Andrew will continue his monthly IVIG treatments at an increased dose than what he's already been getting, and start a new infusion that will suppress his immune system. A year from now, we anticipate Andrew on way less medication and feeling great! This doctor has treated several patients like Andrew so our hopes are high! Side note: We are lucky to live in the Seattle area with such top notch doctors! Go UW!! Patients come from all over to see our doctors here.
Please continue to keep our family in your prayers. We have our ups and downs and continue to take one day at a time.
Love, Dalaina
Since Andrew came home in June, he has been working very hard at his recovery. A therapist told us that, "recovery is a full time job" and boy was she right! A typical week for Andrew includes; physical therapy, speech therapy, blood work to check his INR (because he's still on a blood thinner), doctor appointments sprinkled in through out the month (he has two neurologist, a rehab doctor, psychologist, hematologist, and primary care doctor!), plus monthly infusions. At home, Andrew works on building his strength, balance, and memory. He is OVER his starting weight (something he's very proud of) and looks great! I wouldn't say he's back to "normal" for a few reasons. 1. What's normal anymore, right? We will all be forever changed by this event. 2. His brain is still healing. He had some brain damage from all the seizures and meds. 3. He's still on A LOT of medication
During the week we have lots of help from family, friends, and neighbors. We are back into the full swing of school, sports, and teaching for me (I went back full time this year!). This has brought a much needed routine into our lives and a sense of normalcy. My niece, Andrew's parents, and my mom take turns staying with us during the week to help care for ALL of us! Unfortunately, we are still dealing with seizures so Andrew cannot be left home alone yet. Plus he has lots of appointments during the week he needs to get to! I'm so thankful for the help! I would not be able to work without it!
Andrew has had two hospitalizations since originally coming home end of June. He had a cluster of seizures the end of July and had to spend three nights at Valley. This is probably because they tried weaning him off of one of his seizure meds. They put him back on half the dose and then he had another break through seizure mid-September. This time he only had one and stayed in the hospital one night. They increased his meds back to full dose. He continues to be on the six seizure meds they sent him home on in June.
A couple of weeks ago, Andrew saw an autoimmune neurologist and I feel like we are now on a good track to treat his condition. Although we don't know what caused this to happen to Andrew, the doctors speculate that it's autoimmune. We use the word "speculate" because they have not found the specific antibody that has caused it. The doctor used the analogy of, "it's like treating someone who you know has cancer despite knowing what type of cancer." The hope is that if we treat the autoimmune, then the seizures will stop. To treat the autoimmune, Andrew will continue his monthly IVIG treatments at an increased dose than what he's already been getting, and start a new infusion that will suppress his immune system. A year from now, we anticipate Andrew on way less medication and feeling great! This doctor has treated several patients like Andrew so our hopes are high! Side note: We are lucky to live in the Seattle area with such top notch doctors! Go UW!! Patients come from all over to see our doctors here.
Please continue to keep our family in your prayers. We have our ups and downs and continue to take one day at a time.
Love, Dalaina
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