Brain Fog

Yesterday and today I felt a sort of fog come over me. I never know what brings it on. Stress or hormones or both. The only real option for me seems to be to try to crawl inside my dark turtle shell and hope no one asks me to think, say or do anything about anything. But really - how realistic is that? So in true form, I turned on the light and ventured out into the real world with a brave face and a patient heart.

March break is drawing to a close and hockey season has ended. Overall a good week but somewhat quiet, with only one day trip to speak of. We had a good time at the RBG with cousins and aunts. We saw lots of creepy and crawly things and learned a lot about bugs from all over the world.

The new week is quickly approaching and we are heading back to work and school. The final school term is upon us and there is work to be done to get us to the longed summer break. I expect that things will begin to slow down at work some as school entry meetings will soon be over and we can begin to stop and smell the flowers.

Justin is doing alright, but although optimistic, it seems Justin seizures although small, are not yet extinguished. Good thing is they are short and limited in intensity. I am hoping to hear about Justin's blood results soon. The sample for ANDLFE was sent to the States about 3 weeks ago and the other testing for fragile x is still pending and should be returned soon. I am not as worried about that one - precautionary actually. The latest test that was unexpected was a urine test for Multiple Carboxylase Deficiency. His latest labs taken in January indicate some elevations in his blood which could suggest this organic acid disorder. What a ride. I had no idea what that was, but if it is that it could answer some of the questions we have. There is treatment, although lifelong, and I am anxious to get it confirmed either way. After all you have to rule things out before you can rule things in. If it is that it means a new kind of doctor - a metabolic specialist and lots of questions to help us navigate and better understand this inherited disorder (if it is that). I told Justin that every trip to the doctors with him makes me smarter!!! He just laughed and smiled in his cute, supportive way. He was even happier that we found EMLA, the patch we put on before gets blood taken. It takes all the pain away! Amazing - so trips to the lab will be stress free from now on for both mother and son.

So I look forward to the spring to renew my spirit and bring us closer to the answers to help us choose our future directions. It can't come soon enough for me!