Gearing up
Well, the break was nice but reality is setting back in. I am preparing for a big week! Remember the Mitochondrial test results we have been waiting for? Hopefully I will hear about those results tomorrow. I guess I don't really care if they have it or not, well, of course I care, I don't want them to have it! Either way, I want it to be definitive, that's what I mean. I don't want to hear, "Well, it's not clear if mito is what they have. We would like them to come for a muscle biopsy so that we can confirm it that way." If that is what I hear, then it will be an entire year before we ever find out for sure. I just don't want to drag this on. I am glad for the rest I had this past week, it has put me in a better place for hearing this news. Being tired and worn out doesn't provide a very calming place to hear bad news.
The next big thing this week will involve Spencer. They have confirmed his 40 allergies through the skin test a few weeks ago. This Thursday, they will have to actually inject him with those 40 allergens so that they can get a specific reading and formulate the weekly drug he will need to be injected with. I don't imagine that is going to be very fun. The first round left him really sick that night. I can only imagine how he will feel after this. More missed school...sigh. I hate school more than anything! Trying to get him caught up is worse than anything I can think of...seriously!
Shelbie will head in first thing tomorrow to the hospital for a blood test to see where her platelets are. It's so weird not having any idea where they will be. She has a couple of spots of petichae but it's hard to say.
I can say this, I hope that whatever happens this week, we will be able to take it in stride and that these infusions will begin to feel like our 'new normal', a routine that is no big deal. That would be a really nice feeling!
The next big thing this week will involve Spencer. They have confirmed his 40 allergies through the skin test a few weeks ago. This Thursday, they will have to actually inject him with those 40 allergens so that they can get a specific reading and formulate the weekly drug he will need to be injected with. I don't imagine that is going to be very fun. The first round left him really sick that night. I can only imagine how he will feel after this. More missed school...sigh. I hate school more than anything! Trying to get him caught up is worse than anything I can think of...seriously!
Shelbie will head in first thing tomorrow to the hospital for a blood test to see where her platelets are. It's so weird not having any idea where they will be. She has a couple of spots of petichae but it's hard to say.
I can say this, I hope that whatever happens this week, we will be able to take it in stride and that these infusions will begin to feel like our 'new normal', a routine that is no big deal. That would be a really nice feeling!
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