Today Harper was taken off Vapotherm and moved to 2 litters of oxygen. We are maintaining an oxygen level of 100%! However, Harper still remains at Medical City PICU for her Mardi Gras celebration.
Mardi Gras is French for Fat Tuesday, referring to the last hurrah before the start of the Catholic’s season of Lent, a 40 day period of self sacrifice, beginning on Ash Wednesday. One of the many things incorporated into almost every Mardi Gras celebration is beads. The traditional color scheme is purple, green and gold. For Mardi Gras Purple represents Justice, Green symbolizes Faith, while Gold is for Power. For those with CDKL5; Purple represents Epilepsy, Green represents the CDKL5 genetic condition itself, and Gold is simply a color these children who typically suffer from Cortical Vision Impairment can see. Harper loves her beads no matter the color! It is one of the items we typically play with and use in many of her therapy sessions.
Along with the tossing of beads, the Mardi Gras hurrah means gorging on fatty high carbohydrate foods such as King Cake. Unfortunately, Harper will not be indulging in such a treat. We have noticed over the past 22 months that her seizures seem to be impacted by diet. It is my belief that her CDKL5 genetic condition prevents her from processing carbohydrates correctly. Unfortunately, due to lack of published research I am unable to find a specialist willing to step outside their box of books to help this child and others who suffer with her.
But today a BIG step was taken proving that God can bring good into any situation. A month ago, thanks to the Nutrition and Neurology Clinics, I was given the opportunity to plead Harper’s Case to the Metaboics Team at Texas Children’s Hospital in Houston where I requested a fasting and non fasting comparison of all the enzymes our body uses in carbohydrate conversion. After four long days of review I was denied stating that they felt the results from the tests would not be useful in Harper’s Case. We returned home feeling defeated only to continue our downward spiral of struggles in the eating department since Harper’s diet change implemented by Texas Children’s in an effort to help alleviate her seizures.
Upon our return home I began doing more investigation into my concerns regarding Harper’s diet and found that there are 10 vitamins and minerals our body uses in processing carbohydrates (B6, B2, B1, B12, Biotin, Zinc, Folinic Acid, Magnesium, Iodine, and Niacin). I also found that there are some CDKL5 children taking vitamin supplements designed around their blood levels of these vitamins and minerals. So I decided this might be a better starting point for Harper. Since we are already in the hospital and they are already taking blood daily I made this request last week, which landed me a visit with the Metabolosist here are Medical City. After my typical struggle of a conversation, I was granted my reasonable request, under the condition that Harper will not become a patient of and be treated by this specialist. We now await the results from the lab on Harper’s levels of the above mentioned vitamins and minerals!