Waits for nothing
Shwachman Diamond Syndrome waits for nothing. It doesn't wait to cause it's ugly little problems when things are going well or less busy, no, the problems with this disease never take a rest, at least that's what it feels like.
This week I will be slammed with Doctor appointments and other medical tasks for the kids. Samuel has a couple of doctor appointments this week to check up on a couple of issues. Spencer needs to complete some tests at the hospital and Shelbie goes in for her check up and to see if we need to sign her up for another 4 weeks of chemo. Aside from that, we should hear back this week on our schedule for Seattle the first week or second of June.
It's hard to believe 6 months has already passed and it's time once again for bone marrow biopsies! Yuk! That will be done in Seattle in June along with visits to Oncology, Immunology and the most important ones, Mitochondrial and the Biochemical Geneticist. We know that the kids have abnormalities in all these areas of specialty but we don't know the extent so it will be good to know what else we are dealing with so we can correct the problems with more effective treatments if that is even possible.
A couple of months ago, the kids were diagnosed with a mutated genetic sequence in the Mitochondrial chain. To read more about that diagnosis, you can go here. Part of the question now is if the kids need to undergo a muscle biospy to see if there are more sequencing problems in their mitochondria and to see if it's time to start the Mito Cocktail. One of the only things that can help control the symptoms of mito disease though there is no cure and it is a progressive problem. The mitochondria is like the scaffolding in our cells. In people with mito disease, that scaffolding begins to crumble resulting in organ and cell failure. It's extremely serious and something I am anxious to get resolved.
Finally, this week, I have to complete a mountain of paperwork in order to get help in paying for Shelbie's horrendous medical bills. The help we have been getting runs out in two months then we will be on our own to cover the $12,000 to $18,000 in medical expenses each month. That only creates a little bit of stress for me...sigh. Finally, I will continue to do the needful things in assisting with the care of my friend. So, it will be a busy time but it's good to be busy or at least anxiously engaged as they say.
This week I will be slammed with Doctor appointments and other medical tasks for the kids. Samuel has a couple of doctor appointments this week to check up on a couple of issues. Spencer needs to complete some tests at the hospital and Shelbie goes in for her check up and to see if we need to sign her up for another 4 weeks of chemo. Aside from that, we should hear back this week on our schedule for Seattle the first week or second of June.
It's hard to believe 6 months has already passed and it's time once again for bone marrow biopsies! Yuk! That will be done in Seattle in June along with visits to Oncology, Immunology and the most important ones, Mitochondrial and the Biochemical Geneticist. We know that the kids have abnormalities in all these areas of specialty but we don't know the extent so it will be good to know what else we are dealing with so we can correct the problems with more effective treatments if that is even possible.
A couple of months ago, the kids were diagnosed with a mutated genetic sequence in the Mitochondrial chain. To read more about that diagnosis, you can go here. Part of the question now is if the kids need to undergo a muscle biospy to see if there are more sequencing problems in their mitochondria and to see if it's time to start the Mito Cocktail. One of the only things that can help control the symptoms of mito disease though there is no cure and it is a progressive problem. The mitochondria is like the scaffolding in our cells. In people with mito disease, that scaffolding begins to crumble resulting in organ and cell failure. It's extremely serious and something I am anxious to get resolved.
Finally, this week, I have to complete a mountain of paperwork in order to get help in paying for Shelbie's horrendous medical bills. The help we have been getting runs out in two months then we will be on our own to cover the $12,000 to $18,000 in medical expenses each month. That only creates a little bit of stress for me...sigh. Finally, I will continue to do the needful things in assisting with the care of my friend. So, it will be a busy time but it's good to be busy or at least anxiously engaged as they say.
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