I have not forgoten about all our amazing supporters who are waiting on news regarding Harper’s progress and the outcome from our recent travels. Unfortunately our news is not good and we are busy doing everything we can to just keep Harper going each day. Due to her increased seizures and the severity of them she had dislocated her jaw. She was left to suffer through the pain of this during the 5 day hospital stay at Texas Children’s in Houston since the dentist literally refused to come assess her situation. We have had her jaw realigned by her chiropractor but now we have regressed to the point of feeding Harper with a syringe. We are not sure if it is due to pain from her jaw or strain in her throat muscle from the intense seizures. We have a swallow study at Plano Presbyterian tomorrow morning thanks to the excellent care she has been receiving from day one by her pediatrician and neurologist right here at home. Too bad they are at a loss on how to help her with the diet situation.
When we changed her diet at Christmas the seizures became extremely intense and more frequent. When I attempted to change her diet back her seizures went crazy and then she was refusing to eat which made for more seizures do to inadequate nutrition and that lead to a dislocated jaw which made it even more difficult to get her to consume the food necessary to help bring some seizure control back in place. We took this last trip to Houston for an opportunity to meet with a Metabolic team of specialist as I have been trying to get her looked at for the past 10 months from a metabolic perspective. The trip was an opportunity lost as the doctors refuse to step outside of this vicious circle we are in and perform a simple blood test that might or might not help Harper live a better quality of life. The explanation given was “due to lack of research we feel the information obtained would not be interpretable nor useful to Harper.” My response: THAT”S CRAP! Well at least that is what was in my head at the time other more professional words were spoken.
We have a wave of emotions we are struggling with at the moment. If we had never switched her nutritionally inadequate diet we would be having 2 sometimes 3 seizures per day that would last at most 3 minutes. She would be sleeping through the night and progressing in therapy drinking from a straw and just about ready to sit unassisted. Now she is no longer able to hold her head up at all and can barely consume food (liquid or solid) from a syringe. A good feed will take us 30 minutes but most of the time we are looking at 45 minutes to 1 hour and 15 minutes for her to consume one meal that used to take 10 to 15 minutes. We seem to be leveling out at 7 seizures per day lasting 8 to 12 minutes each time which is an improvement from the 10 plus per day we were having after the diet switch. It is obvious these seizure come with great pain for her as she now cries out and screams during them.
It is now more than ever, imperative to Harper’s survival and others with her condition that our research project with Dr Jensen be able to be completely funded. The project has started and is in the planning phase with the experimental phase set to begin early spring. As we approach that portion of the project I will keep you posted but keep in mind we will not get to the end result if we cannot finish paying for it’s completion. We still need $92,290 to make this happen.
It is very frustrating and heart breaking to know that we worked so hard and she was in a decent place progressing nicely until this change in attempt to make things better backfired. She is almost two and now physically as a newborn but still with an understanding of a 12 to 15 month old. That has to be frustrating for Harper. I just feel so lost at the moment. Everything is so off balance and I don’t have a clue what to do other than continue to move through the motions of each day and hope for a clear direction. It is obvious to many in our small group of those affected with CDKL5 that their is a relationship between food and seizures to some extent yet there has been no studies done and how do you connivence an unwilling group of specialist that contain the knowledge and expertise necessary to help that their help would be beneficial.
Having a realization that Harper is dealing with something painful I cannot fix brought an overwhelming feeling of hopelessness this week and then this song came on I Refuse as I was flipping stations and I remembered I am not trying to “fix” Harper! She is perfect! I am trying to help her to lead a better quality of life serving God! I still wake up daily making the choice to be positive but this week it has been much much harder to make that choice and keep my eyes and heart focused on the blessings we have rather than the set backs we are facing.
SIDE NOTE: Happy 4th Birthday to Big Sister Lily!
