Although the test results keep slowly trickling back, the answers are not. Time after time, we receive a result of normal. While this is good news, it leaves us unsure of what the true diagnosis will be. We continue to draw and give more of Cannon's blood, we continue to run more tests and we continue to wait.
Since Cannon's health has been less than optimal, we have decided to postpone the muscle biopsy indefinitely and begin the mitochondrial cocktail to see if his body will respond. We will do the cocktail treatment for three months and re-evaluate the situation at the point to make a choice about a biopsy. The cocktail of medication, even though it seems to be simple oils and vitamins, it needed to be compounded at a pharmacy in the big city of Yakima. I just have to say that when I walked into the pharmacy, I was a little overwhelmed when I saw the Pharmacists in the back putting together concoctions while wearing thick gloves that look like Oven Mitts. It must be some special stuff they are working on- and I am thankful for it.
We began the treatments on Monday. He has not started holding up his head, sitting up or crawling yet but his cold has improved and his irritability has subsided. Yes, he could've just been at the end of his sickness but whatever it is I am thankful he is feeling better, smiling again and sleeping through the night.
3 comments:
I was so happy to read and see this blog! Seriously, to have him improve this much makes us so happy! It is so hard to always be sick for a little baby--and so hard on the family, too. Your mother is an angel! She really knows how to handle little Cannon.
Glad to hear he is getting better, and that you are getting some sleep. He is such a handsome little man! I loved the "snort, snort, puff"... Cute, but sad he was feeling terrible.
did you get the messages I left you? The test for SMA is only a blood test, but you have to request it most of the time. Your family is in our prayers. We have always loved you!
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