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Hitting a Rough Patch

Hitting a Rough Patch

I was keeping up with everything. The laundry was washed, blog posts were getting written, and the house was clean. Looking at my blog, you might think I vanished into thin air. Those who followed me regularly were left scratching their heads, “what happened in June 2017?” I never forgot about the blog, or all of my readers. In fact, I missed you dearly. It’s time to share what brought me to a place I couldn’t post for a year.

Our son was doing well. All of his medical appointments were three to six month follow ups and keeping up with the house just wasn’t a challenge any longer. We found a daycare about ten minutes away willing to take a child with a feeding tube for four hours three times a week. They reassured us they were comfortable running his tube feeds, they had done it before for other children, and that they were able to give him the attention he needed. We had a plan and it was as solid as such a plan could be. With that, I took a part time job close to home. The arrangement was I would be in the office while my son was in daycare and work from home for the rest. I couldn’t have asked for a more flexible work arrangement.

As often happens with children who haven’t been exposed to illness outside of their home, our son got sick. Each time he recovered we took him back to day care. I’ve never seen a kid catch so many colds. Some of the colds made him sniffle, others made him cough, and all of them gave him a fever. I started working from home a lot. It wasn’t ideal and it was significantly more stressful. I told myself to hang in there. This is normal, I thought, and once he worked his way through being exposed to so many other children he would settle in and enjoy day care.

Just like in early 2014 when this journey began, things did not work out as planned. Frankly, do they ever when kids with medical needs are involved? After six weeks of continuous illness, we took our son to the pediatrician for a variety of tests to make sure he hadn’t contracted something worse than five or six different rounds of the common cold. He hadn’t, and the pediatrician wasn’t certain why he didn’t feel well. A few months later we would receive a full explanation. I’ll spare you the waiting. This bout of illness kicked off an autoimmune reaction to our son’s blood platelets called Ideopathic Thrombocytic Purpora, or ITP for short. You know how people tell you that all those illnesses your children catch when they start school or daycare are just strengthening their immune system and won’t hurt them? The vast majority of the time this is absolutely true! This time we didn’t fall into the vast majority.

I held on for a few months through weekly hematology visits and lab draws. Other things came up also which I’ll cover in future posts. I resigned my job and went back to being a stay at home Mom. I’m glad I made the attempt. I hope to give it another go in the future if the opportunity presents itself. In the meantime, I’m making every effort to keep my feet under me this time around.

Keep an eye out for future posts to hear more about else what happened in the last year. I’m writing and publishing the story in pieces in case things come up along the way that prevent me from posting regularly.

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I’m Still Here

I apologize profusely for the silence. It’s not like me, and I’m disappointed in myself for letting it occur. I became overwhelmed approximately the end of November, and I’m only now getting my feet back under me. Again, I’m sorry.

A lot of things have happened in a month. I’ll stick to the highlights and keep this brief. Our son is beginning to do what most people would consider eating. He’s getting more confidence every day in his ability to keep food in his mouth and swallow it safely. A lot of us take it for granted – it’s never been a given for him.

We thought we would need to go in for a heart catheterization. The interventional cardiologist recommended against it because of the risk due to his bleeding concerns, and he wasn’t certain he would find any more relevant data than we already have. There is something concerning going on with our son’s heart, enlargement of one of the chambers, and there’s no apparent cause. So far he shows no visible signs of heart difficulty.

I haven’t forgotten you, and I hope to begin writing on a weekly basis again soon. Thanks for staying with me.

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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Feeding Problems and Speech Delay

Feeding Problems and Speech Delay

Our son has been trying to talk for a while now, and he tends to be reasonably understandable when he wants something. Every once in a while, he’ll even surprise you with a full comprehensible sentence — maybe once a month. It’s clear he understands complex thoughts and long sentences based on his response to instructions. So, what gives? Why is he not speaking clearly on a consistent basis?

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Unexpected New Roommate

Unexpected New Roommate

My Mother moved in with us last week. There was an open invitation, but it had been open for a while. She’s been invited down for at least a year and had been putting off moving in. She was hoping the problems that forced her hand would resolve themselves. They didn’t, and as they grew worse the push to make the transition finally overcame the effort required.

The first week was a little rough. Our son likes having my full undivided attention, and the cat wants the rest. Both of them were a clingy mess over the past week as they jostled for who would get me next. I’m so relieved the competition is coming to an end. I’m pretty certain no one is getting any less love or affection than they got before. I can only assume the anxiety of the moment drove the whole mess, and everyone is now content to be back where they were before. I guess I do have to admit, it was a lot of work to get my Mom settled. They might’ve had to sacrifice a little of my attention for me to help her get comfortable.

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Update – More Testing Needed

We went to the hematologist yesterday. They need to run more testing. According to the tests ran two weeks ago, our son does clot moderately slower than expected. They’re not sure why and the additional tests will hopefully provide some insight. Depending on the cause it may be easy to manage. I didn’t ask questions about what we’d need to do if it wasn’t easy. I don’t want to know unless I need to know.

It’s been tough for me because I wanted to believe I was wrong. I wanted with all my heart to believe I was paranoid and I had been nagging nurses to hold the gauze a little longer and check before they put the bandaid on after removing an IV for no reason. I wasn’t wrong. I’ve known for a long time he had this issue and while I chided the nurses to be cautious, I still denied to myself that there was a real problem.

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Update – A Rough Fall

No word yet from the doctor about the lab results which, frankly, is probably a good thing. About a week from now we’ll go back for an office visit and get the official word. If they haven’t called yet for additional testing they probably won’t. It’s still possible I might get a call but most likely there are no bleeding issues and the appointment will be straight forward. It’s definitely a relief not to have heard back with bad news even if there’s a small chance the call might still come.

The wound is healing. The kaleidoscope of colors has faded for the most part. Now he has a golf ball sized lump. While it looks bad, it’s almost reduced to the point you might expect it to happen from a random bump on the head. I’m looking forward to it going away entirely. With every bump and scrape, you get a funny look now and again from strangers. This particular injury has resulted in way too many uncomfortable encounters for my tastes.

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Crazy Week – A Rough Fall

Crazy Week – A Rough Fall

Not sure how many people know this. I certainly had no idea before this past week. Noonan’s Syndrome carries a decently high probability of having a bleeding disorder of some kind or another. Having a bleeding disorder can mean a lot of different things. Sometimes the bleeding is slow to stop. Sometimes the wound re-opens easily for multiple different reasons. I didn’t know any of this until our son took a spill face first onto the hardwood floor from standing height. He falls a lot but this one was different. A blood vessel in his head burst on contact.

Instantly he had a golf ball sized lump on his head. I wasn’t sure how serious that was so I was dialing the pediatrician when it gradually doubled in size before my eyes. Suddenly, I didn’t feel so comfortable waiting on hold. I called our emergency number and waited for the medics to arrive. When they came in the lump was about 90% of the size it would eventually become. They advised I take him in as a precaution so we grabbed my purse, both of our shoes, and loaded him into the ambulance.

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Teaching Our Son’s Immune System

We spent almost two years keeping our son away from anyone who was contagious and many people who might be. It was for good reason. His weight was precarious and when he got sick he got REALLY sick. A normal illness would take twice as long for him to recover from as it should. Meanwhile, he would vomit more food just as he really needed the extra calories.

When we first heard we could get him out more and worry much less about illness we were really excited. He could go to play groups. He’d be able to play with other kids his age at church. It sounded like it opened so many doors! In reality, it’s been a bit of a nightmare. He still takes a long time to recover from many illnesses. If we catch something at the same time he’ll be struggling with it days after I’m better and it will eventually settle into his ears, nose, and throat.

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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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