So here it is, a couple of weeks after school let out. So far the children are managing well in the heat. The 'dog days' of summer can be pretty difficult for them so their father and I are always on high alert with any activity. For example, this past week has seen a lot of 90+ degree days here in VT. That's not unusual at all. The children's father kept them inside every day that it was super hot and humid. They want to go play outside but they often forget to hydrate enough when they get too involved in playing with their friends. Last summer, Michael ended up at the hospital overnight when he experienced leg pain after being outside running around for most of the day. He had over a quart of Gatorade but didn't eat much because he wasn't too interested in food. It was another learning experience. And now Gatorade has developed these gummy chews that are 100 calories and contain B vitamins and electrolytes. If the kids don't want to eat, they can eat least chew on those and that gives us some peace of mind.
I am going to start looking into making our own electrolyte solutions. The ones we buy are full of artificial colors, flavors and high fructose corn syrup. Perhaps they don't really bother the children at this point but with the amount they drink, eventually those additives are going to catch up with them. And with natural gelatin, perhaps I can make them some of their own 'gummy' chews as well. Definitely worth investigating...
In the meantime, the children (all three) are managing ok this summer. It is still my oldest, unaffected child Nathan who I remain the most worried about. His headaches continue and he has been having heart palpitations and shortness of breath when he exerts himself. He sees a cardiologist in August to determine if he has the rare Wolff-Parkinson-White syndrome that his grandmother has. It can be hereditary and with the amount of 'luck' my children have had at this point, it seems a likely possibility. I really hope that isn't the issue but at the same time it would explain why such a healthy, fit boy can have so many troubles. It's definitely not asthma or allergies causing his shortness of breath.
I have found through all of this, with all of the children how important it is to be an advocate. A mother bear. A bull. A major pain in the ass. Doctors have many patients. I have three children. It is my job to guide and protect them and make sure they receive the medical care they need despite what the doctors say.
This summer is full of doctor's appointments. July starts off with my own! I am finally getting my own DNA testing to see if I am not only a carrier but also have CPT 2 deficiency as two of my children do. It is also good to find out for Nathan as well as myself. If I have the disease, than Nathan is a carrier without a doubt. If I don't, then Nathan has a 50% chance of being a carrier. He really wants to know if this disease is going to affect HIS life and it will be good to get answers for him as well as for myself.
And other than that, our goal this summer is to have fun and keep the kiddos out of the hospital. Here's hoping! :)
