Five days….
Five days is what we had this time….five days that we were able to enjoy the hope and the possibilities of a new treatment for Drake…an all natural treatment that would finally allow his body to heal…..five days before we were scrambling again trying to retrace our steps and understand how things have turned so drastically from advancing forward to plummeting downward….
We started Drake on a cinnamon regiment last week. We have been piggy backing on some Alzheimer’s/diabetic research that studies cinnamon and the healing effects it has on the body and brain. We had tried the cinnamon once before but we had to stop because there were interactions with Drake’s main medicine. For a child with NKH there is only one treatment to lower the glycine…and to the general public it is a side effect… For Drake this “side effect” is our life line… a treatment that doesn't come without cost….Sodium benzoate is a food preservative that we have to give to him daily, in high, high doses….sodium benzoate acts like peroxide to a germ cell….once the body metabolized the SB it forces so much oxygen into the cells it literally can explode human cells…..Drake’s cells….and we give it to him everyday….because there is no other treatment….
The reason we keep trying cinnamon is because once ingested our liver converts it to cinnamaldehyde and then into a natural form of sodium benzoate….a stronger, longer lasting sodium benzoate that is ALL NATURAL…. being that this has never been tried …we have no research…..no way to know the effectiveness or the right “way” to do it…..
Drake was off of his artificial benzoate for five days…..he has to take grams of it daily to keep from going into a coma…and now that we are on higher doses he throws up and seizes shortly after giving it….every single dose now he responds that way….Once we stopped the artificial SB during the cinnamon trial he stopped having the horrible, gagging seizures…he stopped holding his breath for what seemed like an eternity while his little lips turned blue….and I stopped dying inside each time I forced this medicine into his little body knowing what it is doing to him…..we had hope for a new treatment.
Five days we watched him move his torso and arms in ways we haven't seen before….we would stare at him and each other just imagining what a month from now would look like….five days is all it took to send him into 3 days of uncontrollable seizures that we are still trying to get under control. This disease is so rare there is no research, and because there is so little funding the research is so limited….so if we find things that seem promising we have to try it on Drake because there is no one to call to make it happen….the three scientist world wide that are studying this disease are very nice when I call with all my “ideas” but their budgets are so tight and they have only a certain amount of mice “that are already allocated to certain studies”……
This is hard….not just hard because Drake struggles every day or hard because we are partially living because we are always on code orange keeping ourselves prepared for a code red if Drake shifts…living under this state of stress you get used to and by the grace of God, it becomes your new “normal”…..
……but what is hard is the constant battle with the devil for our hope….. Some days, it almost feels like I am screaming it to remind him that regardless what happens in this life….this battle is already won and my GOD IS VICTORIOUS!!!…..
After a week like we have had and yet another failed attempt that leaves Drake struggling…all we know to do is rest under His wing….after I have cried and morned all the things I wish were different…..He reminds me that “His ways are higher than my ways and His thoughts are higher than my thoughts”…. and that in His perfect timing all things will be made right and just and fair……. all He wants is my trust that He is who He says He is……my Father, the beginning and the end….the great I AM….
Please pray for Drake as he heals ….please pray he is able to regain his abilities and movements and there is little regression… Please pray for healing mentally and physically…all we know is to keep trying….until there is better treatment… we have to keep trying…
We love you all, Eric and Tarah, and babies
Isaiah 55:9
For as the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.