For those of you who have been following our journey from the beginning, you are probably aware that we have been battling weight issues since Sonzee turned 5/6 months old. This issue, like many that present themselves with CDKL5, became apparent gradually. It was only after she had multiple trips to different doctors for various reasons that it dawned on me that her weight was dropping from the previous visit or remaining stagnant. Unfortunately, when your child is seen my various medical professionals, it becomes more challenging to keep track of these "smaller" ticket items. During Sonzee's 10 month checkup, I mentioned to her pediatrician that the previous week her weight was only 13lb 9oz at the neurologist, and I could have sworn it was higher at the appointment she had just a couple of weeks before that one. The neurologist’s office chalked it up to being weighed inaccurately, but I was uneasy because I knew she had been weighed each time with her clothing off. It was then that her pediatrician was on board with there actually being a concern.
As many of you also know, Sonzee is a breastfed baby. I have breastfed all four of my children for various lengths. I introduced solids to each of them at different times during their "babyhood" as well. For Sonzee, Sam and I decided early on that we would not like to play the seizure/food lottery (as we are typically only winners of the less desirable lotteries), and so we found a nutritionist willing to work with us, and we began to incorporate foods that were low in carbs/sugar in addition to her breastmilk intake. For all of my children, we use the first year to be primarily breastmilk and the solids to be more of food introduction and to gain oral motor skills (the speech therapist in me cannot help herself).
We decided with our neurologist as soon as their staffed nutritionist was able to take on Sonzee as a new patient we would transition into the ketogenic diet. For us, this would be surest way to not aggravate the seizures. We have been feeding Sonzee avocado, hummus, olive dip, and asparagus for a good while now. We have had some successful weigh-ins since October, with her weight remaining at least stagnant and not dropping, and her most positive being just 3 weeks ago with Sonzee weighing 14lbs 10oz. In my mind, we had a gtube consult back in December to just discuss the possibility of the gtube, but not to actually ever have to need it.
During our visit, the surgeon, who was recommended by a dear friend here in Phoenix re: personal experience, was very helpful in answering our questions. We decided we would not be interested in the ngtube, as those can be very irritating to the throat, and if we wanted to preserve her desire to be fed by mouth; this route was not recommended for long-term use. We instead figured when/if the time came, we would prefer to start with a gtube, as this would be better for the long haul. I think I can include Sam in my current statement, that when we left his office, we were still undecided about whether Sonzee would actually need the gtube. The doctor stated that she was on the cusp of failure to thrive, but to us, she still had time to show everyone she could gain weight on her own. I figured by the time of our ketogenic diet consultation, we would have a good idea of whether the gtube would be beneficial for her.
I was even more determined following that appointment to get her filled with foods. I even mentioned multiple times that if at her next weigh-in, if she had not gained weight at least I would know I had given it my all. Any chance we had, we would force food down her throat. I woke up every time she shifted in the middle of the night to encourage her to eat. I really, truthfully did the best I could in that department. I know she ate whenever she was awake and willing. I tried nearly every suggestion that was shared with me to increase her calories, but it was also the seizure factor. When she has a seizure she will sleep for hours following it, and there is no amount of encouragement I could offer to change that.
Last Wednesday we had our meeting with consultation team for the ketogenic diet. We are to be starting it any day now. Her lab work has been completed. She has a couple more tests/scans she needs to undergo, and we are just waiting on the email from the nutritionist. Her medication has been changed to pills, so they can be cut, crushed, and added into her diet without added sugars from liquids. They weighed her at this appointment, and sadly, she is only 14lbs 8oz. We decided that the gtube is what is best for Sonzee.
She had her video fluoroscopy this morning and the results show she is a great candidate. Her stomach empties appropriately, and her anatomy of both the esophagus and stomach are great. We are now just waiting to hear from the surgeon as to the surgery date.
We know we did the best we could to help her without the gtube. We understand and know the risks of having a surgery; we know and understand there will now be an increased risk of infections. We are aware that with any procedure there are always negatives as possibilities. We are doing what is best for the bear. We have HER front and center with all of her care decisions. This is what is BEST for Sonzee.
Maybe if I say that last line enough times, I will be "okay" with this outcome.
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