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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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4 Ways to Encourage Independence

Children with medical needs or other special needs are heavily reliant on their caregiver in many cases. In the majority of situations, this is out of necessity and not preference. Most parents would love their children to be able to play on their own for a little while so they can take care of household chores, make phone calls, and take care of other tasks. I’ll share a few ways myself and other Moms I know have increased their child’s independence. I hope they work for you as well!

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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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Undiagnosed

Undiagnosed

I have a love hate relationship with our son being undiagnosed. On one hand it allows me to be confident whatever he’s struggling with is not on the list of common issues with a poor prognosis. On the other, there’s no specific medical term to tell people when they ask why he has a feeding tube, low muscle tone, and random spells of fever for no obvious reason. I have met other mothers who have children with similar problems in online support groups, but most people have never heard of the combination of symptoms we’re dealing with.

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Why My Child Doesn’t “Look” Like They have Special Needs

I love this! It’s so well explained. I’m frequently in this situation with my son since he mostly struggles with eating and gaining weight. It’s not obvious to strangers he has a feeding tube, and his therapy has significantly lessened the harmful effects of his hypotonia.

Special Needs parents often get many comments about why their children “look” fine. Here is my answer to why that is for my children and many others.

Source: Why My Child Doesn’t “Look” Like They have Special Needs

The Difficulties of Being a Parent to a Child with Hypotonia

At six months our son was just starting to lift his head. At sixteen months his arms were still too week to support crawling, despite being in occupational therapy (OT) for over a year and physical therapy (PT) for three months. We did tummy time. We tried every trick in the book recommended to us. With the help of OT and PT he’s not falling further behind, but he’s certainly not catching up either.

He struggles with what’s called Hypotonia, or low muscle tone. He’s much more flexible than you would expect a child to be. He can put his feet up by his ears without even straining and he’s well over a year old. This flexibility causes him to need additional strength to keep his muscles in place, and he can’t make progress on physical milestones by himself because he lacks the strength to lift the weight of his body and head without significant assistance. Thankfully, with help he does get stronger. However, if you left him to his own devices he doesn’t work on his physical milestones like you would expect. In fact, he doesn’t work on them at all.

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RQ, What Health Problems is Your Son Struggling With?

I was recently asked by a reader what our son is struggling with. I had avoided discussing it because I didn’t want to burden anyone with the details. I wasn’t sure if the specifics would be unnecessary, and I didn’t want to make anyone uncomfortable. I realize now that it would help people understand where I’m coming from if I shared more about his situation.

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