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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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What Can I Do to Help?

What Can I Do to Help?

This is the number one question we hear from family members and friends. It doesn’t always come out explicitly and sometimes it’s not even clear. I can see it in their eyes. They want to help and they have no idea how. They feel powerless and it doesn’t feel good. It’s uncomfortable, confusing, and frustrating.

It makes it even more difficult that we don’t always have an answer. Feeding our son isn’t as straightforward as it is for most kids. If someone does watch our son for us we need to be back before it’s time for him to eat. Some aren’t comfortable watching him at all because they don’t understand what it means to have a feeding tube or how to handle an emergency.

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Feeding Tubes and Swimming

Feeding Tubes and Swimming

It’s a common question. “My child has a surgically placed feeding tube. Can they go in the water?” To answer there’s some context required so it’s best to consult with your physician. This is especially true if the tube site is less than 6 months old. Assuming the tube site has completely healed from the surgery and the stoma is well established, the rest of the post applies to you.

If your child gets in the water and the water goes through his stoma it lands in his stomach which is the exact same place it would end up with any other child. There are plenty of places where swimming is simply a bad idea. Lakes can grow many different types of bacteria which can make you sick. If you’ve been swimming in a lake your whole life you’ve probably already been exposed to whatever is in it and it’s unlikely you’ll get sick. A child who has never swum there before might get very sick from that same bacteria.

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Back on the Curve

Our son had fallen off of his growth curve about six months ago. Since he was getting close to two years old, he was tested for milk allergy. When his results came back they indicated he was likely no longer allergic to milk. In light of this new information, his GI (gastroenterologist) recommended we switch him to Pediasure Peptide 1.5.

At our last follow up our son regained his place on his growth curve. Now that he’s back to doing well we’re starting the tube weaning process. Due to Noonan’s Syndrome, we don’t expect it to be fast or easy. Truly we’ve been working on tube weaning all along. Our efforts have just been focused more on preventing bad things, like oral aversion, over forcing progress. We now believe all medical issues have been resolved to the point we can begin forcing progress without causing harm.

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Car Rides with Vomiters

Car Rides with Vomiters

There are a lot of kids who vomit in the car and it’s mostly an annoyance. For our son with Noonan’s Syndrome every bit of food counts. He has difficulty gaining weight under normal circumstances and getting car sick makes it that much worse. If you find yourself thinking, “It’s not that big of a deal,” please remember it is a big deal for our son.

One of the first things we were told to do with our son to soothe him was to toss him in a car seat and drive him around. Our first pediatrician even recommended sleeping in a car seat as a way to lessen the discomfort of his reflux. We did try these things before writing them off but they weren’t helpful for us. The angle of the car seat seemed to guarantee our son would puke all over himself, in the car or out of it.

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Noonan Syndrome Awareness Month

Noonan Syndrome Awareness Month

February is Noonan Syndrome awareness month, so I would like to share some information about the condition I’ve learned through my journey with our son. It’s a genetic diagnosis. Our son was diagnosed in late 2015 through whole exome sequencing. There are characteristic facial features for Noonan Syndrome and a large head size is common.

Many children with Noonan Syndrome need feeding tubes. Even if a feeding tube isn’t necessary they’re likely to need some kind of high-calorie drink or formula to supplement their diet so they can gain weight. Those with feeding tubes do have a reasonably high chance of outgrowing the need for one if they do not have an oral aversion.

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The Nearly Impossible Task of Finding a Sitter

The Nearly Impossible Task of Finding a Sitter

Finding someone to babysit for a few hours is both the easiest and the most difficult thing I’ve ever done. Whenever I mention to a friend or co-worker I need a babysitter they  know a million and a half people who would LOVE the job. The excitement is palpable. They’ve clearly convinced themselves they know a 13-year-old whose minimally responsible enough to make sure a younger child in their care makes it through being babysat without a trip to the emergency room.

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Planning for Thanksgiving

No matter what your situation, the hustle and bustle can be a challenge. Our son’s vomiting and feeding tube add an additional level of complexity. Family drama on top of it all guarantees this season will be an especially challenging one. I’m certain I’m not the only one dealing with this, so I decided to share some of the things I’m planning in order to make the holidays as joyful as possible. I hope they help, for both of our sakes.

We’re hosting Thanksgiving this year. It’s the only way to avoiding missing out on the food trying to manage the toddler’s tube feedings and vomiting. Dinner is the high point of Thanksgiving, and without me managing the kitchen it would be impossible to keep dairy and eggs out of as many items as possible. This can be as simple as pulling our son’s food out before the butter goes in, but that’s difficult to do without being underfoot in someone else’s kitchen (mostly because wherever I go the toddler is not far behind).

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Taking a Step Back

Having a child on a feeding tube is an emotionally difficult thing at times. No matter how hard I try, I’m frequently plagued by mom guilt about my child being unable to eat enough to keep himself alive. All of the feelings tangled up around our son’s feeding difficulties came out into the open today. There was no gentleness about it, the scab was ripped clear off the wound without mercy. There was a ton of notice it was coming, leaving the discomfort to steadily build alongside the anticipation.

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The Hour that Changed Everything

The Hour that Changed Everything

We found a doctor researching our son’s gene mutation and were able to get in and see her. It took the whole day between preparing to travel, traveling, and the appointment itself and was well worth the effort. We needed to talk to someone with a good understanding of our son’s genetic condition in order to move forward with the best treatment possible.

It turns out we’ve been taking excellent care of our son. Even without knowing his underlying disorder, we’ve still effectively treated all of its symptoms which can be treated. I’m sure this sounds underwhelming considering the title. Our son’s treatment plan was an important reason, but not the only reason to have this appointment. It was also important to help my husband and other family members progress through their grief and understand our son’s needs.

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