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Summer is Coming!

We’re in the middle of a rainy Spring here and it’s such a relief Winter is behind us. Our son missed a lot of school due to snow and ice in addition to the days he missed for doctors’ appointments. I’m so over the cold. With the weather improving, it’s time to bring up some of the topics that see frequent discussion every year once the weather warms!

Do you have any special plans coming up? I would love to hear about them! We have a difficult time traveling with our son and he doesn’t tolerate the heat well. I would enjoy some sources of inspiration on how we might be able to take a tubie-friendly adventure this Summer.

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Our Little Trooper is Now Diagnosed

Our Little Trooper is Now Diagnosed

We now have an answer for why our son has been struggling so much medically. It turns out he has a genetic mutation in a gene SHOC2 which causes a condition called Noonan Syndrome-Like Disorder with Loose Anagen Hair. This is all new to us, we only found out about it yesterday. It’s been even more difficult to get our minds around it because Dad is still recovering from his surgery. From what I can tell so far the diagnosis is overall good news. Speaking to other parents whose children also have this condition, it’s quite possible our son will grow out of his feeding difficulties. It’s also not a degenerative disease, so whatever he accomplishes won’t be lost to the condition as he ages.

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The Agony of Waiting

We’re waiting on exome sequencing results to come back for our son. They’re scheduled to come back early October. We’ve been waiting 12 weeks just for this test. We were waiting a little over a year for them to agree to run the exome sequencing because every other diagnosis had to be ruled out first. Depending on the test results, each specialist will make their recommendations. They’ve given no hint as to what they will recommend. They can’t, because we have no idea whether or not we’ll get a diagnosis much less what the diagnosis would even be.

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Your Child Looks too Healthy to Have a Tube

First, thank you. Unfortunately, it’s not that simple. If only getting to a low side of¬†normal weight automatically made my son want to eat and drink enough to sustain himself. That would make everything so much easier. There’s something I need to share with you while we’re on the topic.

My child is healthy because of the tube. If not for the tube, he would still be off the bottom end of the growth chart. For the first year of his life he gagged on anything put into his mouth besides formula (and sometimes that too), so he wouldn’t have been able to take any medication. We suspect its because of his medication he eats what he does. He has all the behavior symptoms of GERD (gastroesophageal reflux disease) when left untreated.

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Eating Problems Requiring a G or JTube are More than Picky Eating

Sometimes people say insensitive things. It’s generally not intentional, and I prefer to assume everyone has good intentions at heart. In the spirit of those good intentions, I would like to differentiate between what constitutes needing a g or jtube versus being a, “picky eater.”

Picky eaters are a struggle. Their parents spend a lot of time encouraging and coaxing them to eat, and they frequently refuse to try new things. At the end of the day though, the child does eat. Their food stays in their stomach. They receive enough calories and nutrition to grow. While frustrating, they can generally be expected to at least pick at their food if their belly is empty, provided you can find something that appeals to them. Since they do eat, there are usually a few fallback foods they’ll consume. There’s no expectation that they would truly starve to death if you didn’t produce the perfect series of meals (though it may feel like it sometimes).

The difference between that and needing a g or jtube is that tube-fed children really would either starve to death or be so nutrition deprived they wouldn’t be able to grow if not for tube feedings. At the table they have the appearance of a picky eater, from start to finish. They refuse to eat foods provided. Additional foods are also rejected. When pressed, they may take a bite or two. The experience displays everything you would expect from a particularly challenging meal time with a picky eater. For tube fed children, it’s like this every meal. There is no food you can offer that they’ll gobble up (or if there is, it’s nutritional value is extremely limited and it isn’t viable to be a primary source of nutrition).

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Eating Out with a Tubie

Waiter/Waitress: “Would you like a meal for him/her?”
Parent(s): “No thanks, he already ate before we left home. He’ll share with us if he wants something.”

This is an all too familiar experience¬†for parents with children that either can’t or don’t want to eat. Continue reading

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