I can't believe almost a month has passed since my last entry. I would love to say that it is because I have been on top of preparing for Christmas and thus all of my shopping is complete. Unfortunately, this is not the case. I am in no way prepared for the holiday that is now less than two weeks away.
Things here have been moving along. We are all still adjusting to Samantha's diagnosis and new vitamin/med schedule. Some days I get so frustrated and angry about all of this. But, I know her situation could be so much worse. I have gotten to know lots of children with mitochondrial disease (through the internet and their parents' blogs), and many need very complex medical care. My mantra for us lately has been to just take it one day at a time and see where that gets us.
Sam has been a trooper for the most part and is now taking 6 out of the 7 vitamins Dr. C recommended. The last vitamin, alpha lipoic acid is going to be a bit tricky for her. As it is an actual acid, it can't be given in a liquid form because it would burn her throat on the way down. The compounding pharmacy made it into a little gummy for Sam. But, no matter how many times I try to get her to eat it, she hasn't. I tasted them and to be honest I think they also burn a little (maybe a lot). I am assuming if I ever do get her to actually chew it, she wouldn't finish it anyway. We may have to wait until she is able to swallow a small capsule for this one.
We've also been busy trying to keep Samantha in a bubble during the cold/flu season. We wipe/wash her hands (and ours) constantly. We wipe doorknobs/cellphones, groceries from the store etc. And, we've asked friends and family to let us know if anyone is sick ahead of time. It is tiring to be so vigilant all of the time, but we feel we have no choice but to continue for now. I am not naive enough to think that we can prevent Samantha from ever getting sick again. However, if we can avoid a few sicknesses along the way, I'll keep up the good fight.
A couple of days before Thanksgiving Sam had two vaccines (boosters she's already had several times before) that really threw her for a loop. She had a fever the next day, and was quite cranky for a few days. I'm still not sure if she is back to her old self yet. However, perhaps this is her "terrible twos" coming out? Really, she's not being horribly terrible. Sam is usually so, so sweet and agreeable though. For us it has been weird to hear her use the word "no" so often. And she actually gets upset now if you take something away from her that she wants. In addition to being a bit extra cranky, Sam has developed a fear of long-time toys that make noise/light up. And I mean toys that she's had (and loved) from when she was 8 months old. It isn't just that she doesn't want to play with them. She actually has a look of fear, shakes, and cries, "says, no, and mommy" and reaches out for me. I've been trying to "ease" her back in to them a couple at a time and it seems to be working. I have no idea where the fear came from but it definitely started within a couple of days of getting her vaccines. (I'm not saying the vaccine itself caused the fear, but perhaps her not feeling well, coupled by Thanksgiving at our house with lots of noisy cousins two days later did something? I really have no idea.). To be honest after her reaction to the vaccines I will forever be wary of them going forward. I will definitely bring up my concerns to her metabolic/genetic doctor during our appointment in January. Not that I think vaccines in general are bad--we've always given Sam her shots on time in the past. Given Samantha's delicate metabolic system, I wonder if it is a good thing to continue to give vaccines to her. So far her doctors have said, "Yes, she should get vaccinated". Of course, her actually getting most of the illnesses the vaccines protect her from would be worse than any reaction to the vaccine she could have--and I'm sure that influences her doctors' opinions. Until this last time, she's never really had any type of reaction to a vaccine, and she even did fine with her flu shot a month prior. Again, I'll definitely bring all of this up at her next "round" of appointments and see if her doctors have any insight.
Other than her new bit of spunk and fear of noisy toys, Sam is doing well. She is still slowly walking around the house. We don't get outside much due to the cold temps so we haven't gotten a chance to try out a new loaner walker her PT got for her to trial. She did use it once a few weeks ago (and seemed to like it) However, the next time I tried to get her out (post vaccines) and using it she refused and started to cry about it (there goes that spunk again). We'll keep trying. Her speech continues to slowly improve, which is a very good thing.
I'm sorry this entry has been a bit disjointed, but I suppose that is what happens when you wait almost a month to update.
Until next time,
Monica
