Blog #6: Batman, Batcaves, Batmobiles, Oh My!

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I saved this blog for today so I could highlight our latest adventure.  Last night, the whole family and a group of our friends had the opportunity to visit a real-life replica of the old-school batman and robin batcave, complete with Bruce Wayne’s office, all the aged electronics that you could possibly want to play with, and the highlight, a collection of real batmobiles.  Everyone even got to ride and/or drive the batmobile and the original batman motorcycle with side-cart.  From what I hear, our boys just kept yelling from the side-cart, “Go faster, Go faster!”

I can only imagine that you are asking yourself, “Is this for real?”  Well, so were we when we were offered the opportunity.  The whole story is that a wonderful man named Charles Keller owns a company called Gotham City Motors.  He is incredibly generous and likes to go to whom he says knows best when it comes to donating your money.  He invites children that have endured some complicated setbacks and their families to attend a tour of his batman fantasy world for a night to remember, and donates money in their honor to a charity that has been particularly helpful to them throughout their journey.  In Emilia’s honor, he donated $1250 to TGen’s center and $1250 to an organization called ‘Feeding Matters’ (formally known as P.O.P.S.I.C.L.E). 

Needless to say, fun was had by all.  I forgot to mention the other highlights.  They picked us up in a limo (yes, picture what the boys’ faces looked like when they saw this) and as a parting gift he gave Emilia her very own key to the batmobile that she may return and drive whenever she would like, and the entire video collection of the original batman series...such a crack up!  What a cool place.  Dave and I were so excited to be able to pick an organization to give the money to but it was difficult to choose just one! 

We ultimately selected ‘Feeding Matters’ because we both recalled their executive director taking a couple of very panicked calls from us when Emilia was just 4-5 months old.  At that point, she had an NG tube that had been in place since she was 2 months old, she was throwing up at least 5 times each day, and was growing very, very little despite being given more than 125% of age-appropriate calories via the NG tube.  She ate little to nothing by mouth.  GI doctors wanted us to give her more calories and insert a G-tube; we wanted her to learn to eat and grow, and boy were we all clueless.  When I called the executive director (Chris) we were contemplating going to an inpatient feeding clinic out of state.  Having a child that refuses to eat is a frightening, complicated experience.  We knew that Emilia would be best-served in a team environment that could monitor her vitals and such while still aggressively helping her learn how to eat…seems like a fundamental human right to know how to eat!

Chris from Feeding Matters is a parent that had already experienced these difficulties.  I recall clearly two important points from our discussion.  The first was that it is probably a good idea to look out of state at this point (which reassured us we were doing the right thing), and second was the pain in her voice when I expressed our desire not to go to a G-tube.  She very humbly just said, “I know it is hard to comprehend at this point, but I can promise you that you will be so grateful and relieved to have that tube once you get there.”  Wow, she was quite correct!

For those of you that do not know, this is how we ended up at the Cleveland Clinic in Cleveland, Ohio for three-months.  There are numerous Cleveland stories that I hope to get to at some point, but I will stick with what we consider the highlight achievement from this trip for now.  One of the perks of being at a feeding clinic at the Cleveland Clinic was being able to see a number of world-class specialists.  Our favorite was a GI doctor that spent hours with us, was able to get any procedure he felt necessary scheduled within 24 hours, and gave us the BEST piece of advice.  After 5 or so minutes of calculations during one of our appointments, he turned to us and said, “Your child is not able to produce fat, I know that for certain.  Never give this child more than age-appropriate calories.   Even with age-appropriate calories, I can tell you that she will only gain 75% of age appropriate weight…so don’t expect anymore.”  This was an aha! moment.  This comment became part of her medical records and we took it to the bank, so to speak.  We had to actually stop seeing GI doctors in Phoenix and stick with a nurse practitioner from the GI office who very wisely allowed us to keep her calories consistent with the Cleveland GI’s recommendations.

There were a number of times we questioned whether this was correct, her weight gain was so small some months and we are all susceptible to “more, must be better” thoughts.  However, we fought hard (including with ourselves) to not over-feed her.  The confirmation of success of this strategy has come in two manners; one, the fact that you can look at nearly any time period over the last few years when Emilia was healthy, and she averaged exactly 75% of age-appropriate growth. Two, a few months back we spoke with a doctor from the National Institute of Health about her upcoming visit.  She asked us very nervously, “why does she have a tube?”  I explained her love/hate relationship with food, her non-existent appetite, etc…but assured her that we have never used it to give her more than age –appropriate calories.  She let out a very relieved gasp and said, “Good, because the only other patient similar to her that I have seen with a tube is a five-year old with a very fatty liver, the result of being over-fed for much of her life.”  This could have very easily been us.

Well, we are supposedly set for a week-long stay at the National Institute of Health in Bethesda, Maryland beginning Oct 21st.  Recognizing that this is a service of the federal government, we are obviously a bit concerned that it might be postponed or even canceled, all of that is unknown.  Hum…here’s hoping they figure something out.