I am so glad to have met Marissa via Instagram. She has an instagram account called @artforhopelovecure where she shares about her son Gregory's life with a rare disease and raises awareness for his condition- CDKL5 Deficiency Disorder. In addition to raising awareness for CDKL5, she is also raising research money by selling Gregory's beautiful art work. Marissa feeds Gregory blended food via his J-tube and that this has been a success for them both. I think it's important to share tube feeding stories so that others can learn what options are out there. Although there is still a common belief that blended food can't be used for tube feeding via J-tubes, Marissa's story provides more proof that it is being done with success. Thank you so much, Marissa, for taking the time to contribute a guest post for my blog.
When my son, Gregory, started having seizures at four weeks old, we were, unknowingly, beginning a journey that would change the course of our lives. After doctors failed to get his seizures under control and it was clear that he wasn’t developing anywhere near how he should, genetic testing was ordered. Gregory was diagnosed with CDKL5 Deficiency Disorder when he was six months old. CDKL5 deficiency disorder is a rare disease that affects development by impacting proteins that are essential for normal brain and neuron function.
GI and feeding challenges are common in CDKL5 Disorder, so I anticipated fairly early on that Gregory might one day need a feeding tube. That day came at the age of three, when a nasty and prolonged respiratory illness took away his ability to drink from a bottle and his seizures were so out of control that he wasn’t even alert enough to eat.
Because I knew it was coming (and I have a tendency to over-prepare for everything!), I had been reading about feeding tubes for a while and had joined some tube feeding groups on Facebook. It was in these groups that I learned about a “blenderized diet” for tube feeding. I was excited about the idea because blending food for oral eating was something that brought me a lot of joy when Gregory was younger, and I was happy to learn that I could continue to feed him real food even when he transitioned to tube feeding.
Initially, Gregory had a g-tube placed and my plan of action was to basically continue preparing his meals as I did when he was orally eating purees, just taking more care when blending them. I purchased a Blendtec blender (on sale from Costco!) and I played with a combination of pump feeding and using a 60ml syringe to manually push the blend. Even though syringe feeding was more labor intensive, I liked it better because I could make thicker blends, and this was beneficial for his reflux.
As my son grew, he faced complications related to his CDKL5 Disorder and we struggled with what to do to manage. His care team suggested we try j-tube feeding and Gregory got his g/j button placed around the age of four.
I fought against getting a g/j tube for too long because I thought it meant that I couldn’t blend his food anymore. Luckily, I did research and, armed with information and using my voice, I was able to collaborate with our GI and dietitian to give him real food through the j-tube instead of the typically prescribed enteral formula. It took a bit of convincing, but together we were able to collaborate on a blended diet meal plan that I am happy with, and that Gregory thrives on!
His blend looks different now than when I blended for the g-tube because I use a combination of commercially prepared products and home blends, but it is all still real food. I really love the definition of blenderized diet in the book Homemade Blended Formula Handbook by Klein and Morris. They say “We define homemade blended formula as any formula that a parent makes that modifies a standard formula with “real” foods. It could be a commercial formula with a small amount of baby food fruit or vegetable added, or three meals a day of blended food with commercial formula at night, or a complete diet of homemade blended foods, or many options in between.”
Changing to j-tube feeding was, surprisingly, much easier than I anticipated. I love it! Because he doesn’t have food in his belly, Gregory’s reflux is much improved, and he can “eat” anywhere and in any position - even laying down! On g-tube feedings he had to be sat upright during the feeding itself and for a long while after. No more!
I will say that it is a little sad to me that he no longer has “mealtimes.” Gregory’s feeding pump runs 22 hours a day or so, but the benefits that we have found with the j-tube feeding have definitely outweighed any drawbacks.
I can proudly say that (as far as I know) my son is the first child in our hospital system to get a blended diet in the j-tube. I hope that we are an example for our hospital system that feeding a blended diet in the j-tube is a safe and viable option and that other families will receive the support and encouragement they need to feed their child real food - even in the j-tube.
You can read about how I make my son’s j-tube blend here on my blog.
June is CDKL5 Awareness Month and a key time for fundraising. If you would like to help Gregory and other kids with CDKL5, consider donating to CDKL5 research. You can buy one of Gregory's beautiful pieces of art and know that this raises money for CDKL5. Learn more here.