“You start with a tube…”

It’s been a while since I posted again, but I wanted to pass along a website that I really like.  “You Start With a Tube” is the website of Eric Aadhaar, who passed away this past summer.  He ate through his g-tube due to some complex health issues, and this website is an amalgamation of his learning through personal experience, other people’s stories and research.

What I really like about it is the wide range of topics he discusses… from types of tubes, to making a homemade blended meal… to unclogging tubes.  His learning journey seems very similar to my own, except that he is experiencing things first hand, while I am learning through Henry.

This is always what really attracts me to his writing… his personal observations.  For all my hands-on involvement, I have no idea what it is really like to eat with a g-tube.  I really have no idea what Henry experiences when the food is going into his tummy, or when the pump starts and stops, or when we change his tube.  He is now telling up more about it, and as his language skills develop I expect we’ll hear more and more about what it feels like… but it’s not the same.  So hearing another adult describe the feelings – both physical and emotional – it brings me one step closer to what my little guys experiences.  For this alone, the website is priceless.

Beyond this, it also presents some great information about tube feeding in general, and making homemade blended foods in particular.  For a person new to this area, it would be a great resource to start with.

Cheers, Shelley

http://youstartwithatube.blogspot.ca/search/label/tubes

The Homemade Blended Formula Handbook

Finally… I found it! The help I was looking for!

This actually happened about 3 months go – In February 2011.

We were at SunnyHill Health Centre for Children, in Vancouver, BC, where we had been transferred after Henry’s g-tube surgery. At this point I had already been doing some research about making Henry’s formula myself, in anticipation of when he would get his new tube. But I was always coming up empty. At this time, I didn’t know enough to know what I didn’t know (did that make any sense!?!). Because I didn’t know enough, I wasn’t searching online using the proper search terms, so I kept coming up with unrelated information… and getting more and more frustrated.

Then it happened… Cathy, one of the dietician at SunnyHill photocopied me the front cover of the Homemade Blended Formula Handbook, by Marsha Dunn Klein, MEd, OTR/L and Suzanne Evans Morris, PhD, CCC-SLP (www.mealtimenotions.com). While she said she personally didn’t have alot of experience with it, this was the book to have. It literally changed my life overnight. I went online and ordered it that week.

It is the bible of homemade formulas!

Suddenly what seemed like a foggy goal was now attainable… real… and within my grasp! It is practical, well laid out, and contains so much valuable information and tips. A definite must-have.

And it is also fair. ANY added foods is homemade… it totally takes into considerations different families, different circumstances, and different priorities. Making formula at home isn’t for everyone – not for every child, adult or family.

I read it from cover to cover within a couple of days, and then started from the front again. The templates for each calorie “need” are great. For example, Henry needs about 800-900 calories/day (based on his weight, low tone, activity level), so I started with the 1000 calorie/day template (the closest one to his needs).

I literally cannot say enough about how much this book has helped! And will continue to reference it ALOT.

Cheers, Shelley