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Noonan’s Syndrome and Heart Problems

Noonan’s Syndrome and Heart Problems

Sometimes children with Noonan’s Syndrome are born with heart problems or develop them early in life. Because of this and other unrelated concerns, we’ve monitored our son’s heart since before he was born. This past week I was thankful we did. It’s not otherwise apparent that one of his ventricles is growing at an unhealthy rate. We’re expecting a call from a surgeon any day now to place a catheter up through his leg to measure the pressures inside of his heart.

I’m told this sounds significantly scarier than it is. My husband knows at least one person who’s undergone this procedure multiple times. That’s not overly comforting when your two-year-old is the one going in. I’m terrified honestly. We’ve recently discovered he has Von Hildebrandt’s Type 1. If they need access to his vein, that’s clearly going to involve some bleeding. The medicine challenge they performed a few months ago didn’t last as long as it should have. While they’re not ruling it out – they want to try again after he turns three – that does mean he’ll need two different drugs to help him clot after the procedure is over.

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Christmas? Not Ready!

I’m not ready for Christmas. All the gifts haven’t even arrived yet. One box is scheduled to show up Christmas Eve. I’m going to be wrapping presents on Christmas Eve. It’s going to be glorious. I already have all the food for “Christmas dinner” on Christmas Eve thankfully. My husband asked me last night to pick up something from the grocery store “when I go” and then asked if I was going today. Today? The 23rd of December? Go to a place where they sell gifts? Hah! He’s a funny man. No more stores for me until after Christmas and even then, only stores where the returns and checkout counters are seperate.

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Caregiving

Caregiving

This last week has been difficult. If you follow my Twitter feed you’ve probably seen me mention, the toddler and I both came down with a nasty cold. Dad’s surgery has left him unable to lift more than 10-15 lbs, which means almost everything but the toddler.

So, the two of us have been having our own little mini-party while Dad does his best to help me without being able to lift the poor fella and tries to avoid getting sick at the same time. So far he’s been successful.

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Our Family, Gov’t Style (Silly)

Our Family, Gov’t Style (Silly)

We have three people in our home, Mom (Me), Dad, and the Toddler. I’ve realized lately how much our family function resembles the structure of the U.S. Gov’t. Weird I know, but allow me to explain. The Toddler is most definitely President of our family. I’m Congress, both branches (I do what I want, or so I tell myself). Dad is the Supreme Court.

Mr. Toddler has the astounding ability to veto each and every rule I attempt to issue. He didn’t use this power quite so frequently, but as we reach the terrible twos it’s an almost constant battle. Thankfully, I can override vetos since I’m the ENTIRETY of Congress all wrapped into one (take that, partisan brinksmanship). I do have to be a little careful because the Toddler is not very fond of having his vetos overridden, and doing it too frequently results in even more vetos (meltdown, yikes). Don’t even get me started on executive orders.

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Why I’m Thankful My Toddler Screams

Why I’m Thankful My Toddler Screams

My favorite toddler in the whole wide world has decided for the last several days that screaming at me is the key to his happiness. He screams at me when he’s happy, sad, upset, angry, etc. It’s like he’s just discovered that he can speak in whatever volume he wants and the dial got stuck at MAX. Come to think of it, that’s probably exactly what happened. There isn’t enough caffeine or headache medicine in the house to help my headache right now.

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Toddlers and Glasses, 7 Common Questions

  1. How on earth do they test toddlers for glasses? They can’t tell you whether or not an image is blurry.
    They can shine a light into their eyes and when the light is in focus, that means their vision is in focus. There’s more to it, but essentially they remove the communication requirement.
  2. How do you keep them on?
    Very carefully. No, seriously. The strap on the back is so he won’t lose them. It actually has little if anything to do with keeping them on his face. He takes them off when he’s angry, tired, or wants attention. Essentially they’re on his face because he’s forgotten they’re there. Please don’t remind him.
  3. They make glasses for kids that young?
    Yes, but they’re not easy to find. If you don’t know where to look you can easily spend a long time and way too much money trying to find a place that makes a pair your child can stand.
    Pro tip: If you have vision insurance, call and ask. They’ll know which places in your area sell glasses for toddlers.
  4. That’s an interesting color! I thought they only made pink and blue!
    They make them in just about every color under the sun, but choosing pink or blue is an easy way to broadcast to the world your child is a boy or girl.
  5. He doesn’t break them?
    Nope, they’re solid flexible plastic and the strap is elastic. They’re virtually indestructible. I won’t say completely indestructible, because if I did tomorrow my son would choose to prove me wrong and that would be expensive.
  6. How do you keep them clean?
    We don’t really. He throws up on them, spits up on them, puts fingerprints on them, and spills food on them every chance he gets. They get cleaned at least five to ten times every day.
  7. He’s so cute!
    Yes, he is. He’s a complete chick magnet. Every woman even slightly interested in children can spot him from a mile off. Some try to resist and end up coming to say hi anyway. Thankfully he loves the attention.

Special Needs and Toddler Sleep

It’s extremely common for children to have sleep difficulties. There are so many things that make the little ones too uncomfortable to sleep. Teething, growth spurts, and even learning new skills can tip the balance between a restful night’s sleep and a restless one. Unfortunately, sometimes for special needs kids there’s more complication than normal getting your child to rest. Further muddying the water, your child may not be able to communicate what’s wrong. What do you do? The best you can, and that’s really all there is to do.

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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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Missing Out on the Human Experience

Watching my son, who is an extremely social child, interact with other people has made me realize just how little attention the general population pays to their surroundings. What do I mean by that? It’s completely normal for us to walk into a coffee shop and see everyone but the employees staring down at an electronic device. My son waves, and he says hi. He smiles wide. His whole world lights up when someone makes eye contact. We’ll have our coffee and be gone before anyone makes eye contact with him a single time. If they do, they’ll immediately look away back to their phone, laptop, tablet, what have you.

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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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