I can't believe the summer has passed by so quickly!! I haven't posted in two months. But then, I've barely had time to breathe so I guess that makes sense. In 1 1/2 weeks the children start school again, as do I. Then what has been a busy summer will morph into an insane school year. My CPT 2'ers don't have to see the doctor again until December so that is good. Here's hoping for no complications that put them in the hospital. We've been doing pretty well lately!
The little ones love to swim. We go to the pool as much as we can, which is usually two or three times a week. Since they're only with me 1/2 the week that's pretty good. :) I have them bring snacks with them as well as a drink so they don't get too worn out. Pulling them out every twenty minutes seems to do the trick. If they don't have the snacks, I am carrying them out to the car and the parking lot is VERY far away from the pool building! I'd rather avoid that...these two are getting heavy. They're each around 65 pounds.
I did make some homemade 'gatorade' for the kids a few weeks ago. It was pretty good! I used a basic recipe with herbal tea, Himalayan sea salt, potassium chloride ('no salt'), honey and lemon juice. It tastes just like the herbal tea so the kids drank it down no problem. All three of them liked it so that was a bonus. We did, however, learn an important lesson about the shelf stability of honey compared with high fructose corn syrup. Honey, when left in a liquid, sealed in a bottle and exposed to heat and light not only breaks down the plastic on the outside of the bottle, it also builds pressure inside the bottle causing it to expand. When the bottle is in this state and you attempt to open it to pour the obviously spent and fermented drink down the drain, please don't point it at anyone. And wear earplugs. Maybe some eye protection too. Nathan opened the first bottle and the cap flew off, breaking into a couple of pieces. Smoke rose from the bottle and the explosive sound make me scream and jump. When we realized what happened we both started laughing. Then I thought...we could use these for exploding targets for shooting practice. I'll have to try that out another time. :)
Nathan finally had his cardiology and neurology appointments. The good news: nothing is structurally wrong with his heart. The not so good news: they're not sure why he is having the symptoms he's having. The cardiologist gave him a patch monitor. It's like an ekg that sticks to your chest and you wear it up to two weeks. Pretty genius and better than a Holter monitor, which you cannot get wet. You can't immerse the patch monitor but you can shower with it. The poor kid would go nuts if he couldn't shower for a week or two. He kept the monitor on for a week 'til it drove him nuts. Then we sent it back. We are still waiting to hear about a cardiac stress test. That hasn't been scheduled yet and is the next step of the process. He may also have to do pulmonary function tests just to be sure his lungs are functioning properly. In the meantime he continues to have chest pain, shortness of breath, dizziness and palpitations. Now...for neurology. The neurologist took Nathan off the propranolol he was taking for his headaches. And after reading a report from psych, who had to evaluate him to rule out underlying mental health concerns before neuro would medically treat the headaches, the doctor was determined not to prescribe him the medications she had originally indicated as beneficial. Because he's depressed. I had hoped that getting his thyroid under control would help but it hasn't. Back to the drawing board. We will treat the depression, re-evaluate and see if the headaches are caused by the mood issues. If the headaches persist, then on to another medication. Nathan's getting pretty damned sick and tired of taking pills and I don't really blame him!! It's a lot for a 16 year old to deal with. And now that he's off the one med that was helping his headaches (even if just marginally), they're getting pretty bad again. I was hoping to have all this ironed out before he started school again but this is not the case. The neurologist did praise Nathan quite nicely about his efforts to reduce stress in his life and do what he can to alleviate his depression. It really made him feel good. So he left neuro somewhat more upbeat while I was just devastated. I am absolutely helpless here. I can fight for him, but I can't make him better. I'll try but it's up to him and the doctors. I've at least gotten his living situation changed so he is with me full time and that makes him much happier. He's got a job he enjoys and gets to spend time with his friends on his days off. And he does things around the house for me with little to no whining. (Most of the time)
One other development is the potential inclusion of Ariella and Michael in a clinical trial at OSHU in Portland, Oregon. The papers are almost filled out and ready to submit. Ariella's ready but I'm not sure how Michael feels about it. It involves two trips to Oregon for each child for four days, three nights, all expenses paid for all of us. It's a pretty neat opportunity. I see many clinical trials in their future with the rarity of their disease.
Onward and upward, we keep moving forward a little at a time.
