Category Archives: Our Family’s Journey

Update – A Rough Fall

July 18, 2016 By in Noonan Syndrome-Like Disorder, Our Family's Journey Tags: , , Leave a comment

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

July 13, 2016 By in Noonan Syndrome-Like Disorder, Our Family's Journey Tags: , , , , , , Leave a comment
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

May 13, 2016 By in Our Family's Journey Tags: , , , 3 Comments

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

May 10, 2016 By in Noonan Syndrome-Like Disorder, Our Family's Journey, Uncategorized Tags: , , Leave a comment

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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Big Changes this Spring

March 7, 2016 By in Noonan Syndrome-Like Disorder, Our Family's Journey Leave a comment
Big Changes this Spring

Our son is two years old now and with that came the opportunity to check if his milk and egg allergies had faded with no exposure. A mistake by the lab prevented us from finding out the status of the egg allergy. The milk allergy, however, seems to be completely gone! That alone is good news but there’s even better news. We can finally try another formula. Formula options are extremely limited when your child is Failure to Thrive and allergic to milk.

Formulas can be mixed to different concentrations and it wasn’t appropriate to mix our current formula beyond 30 calories per ounce. The formula we’re transitioning to now is 45 calories per ounce. This gives us a lot of flexibility. Primarily, it’s allowing us to go from five feedings a day down to four. The last feeding of the evening was always while our son was asleep and it significantly worsened his reflux. We’re excited to see it go.

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Quitting My Job and Starting New

February 15, 2016 By in Our Family's Journey Tags: , , , , , , , 8 Comments
Quitting My Job and Starting New

I took a huge leap last week and put in my two weeks notice. My supervisor and I had both been putting off the decision hoping my son’s health would improve and I would be able to return to work. The kid has made tremendous progress but still falls short of where he would need to be to be placed in a childcare center with other kids his age.

I have mixed feelings about the whole thing. Keeping my job would have been my primary goal prior to having our son. Having a child didn’t change that significantly but there’s more to it than that. Now I have a child that REALLY needs me. It’s not a change of heart as much as it’s a change of circumstance. I didn’t know my son would have low muscle tone, a feeding tube, and feeding difficulties when we decided to have him. Now that I know, it simply doesn’t make sense to leave him unless there are no other alternatives.

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Unpredictable Digestive Hiccups

December 18, 2015 By in Noonan Syndrome-Like Disorder, Our Family's Journey Tags: , , , , , Leave a comment

It’s always so unpredictable what’s going to set our son’s digestive system off. You would think since he eats the same thing every day for most of his calories that he would be relatively consistent. You would be wrong, unfortunately. No matter how consistent we keep the external factors he has his own ways of surprising us.

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Big Plans for 2016

December 14, 2015 By in Our Family's Journey Tags: , , , , , , , Leave a comment
Big Plans for 2016

I recently dropped health, vision, and dental insurance at my job because they’re talking about switching me to a part time position. I asked them to wait until the end of the year and they were kind enough to do so, so I dropped insurance and my husband picked up insurance through his work during this year’s open season. In and of itself this wasn’t a big deal, but it’s put some things in motion that I wouldn’t have considered beforehand.

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From Chaos to Calm

November 14, 2015 By in Our Family's Journey Tags: , , , , , , Leave a comment
From Chaos to Calm

It’s difficult to struggle through the chaos jumping from one thing to the next with no break between. Emergency after emergency barrels you over and there’s no way to tell for sure you’ll make it up for breath before the next wave comes crashing down, pushing you deeper underwater. You manage to survive the onslaught and suddenly everything goes quiet. You cringe waiting for the next wave to hit you and it doesn’t come. Instead, there’s nothing. The silence is deafening as you wash up on a perfectly calm beach which would theoretically be a wonderful place to be except the transition is so abrupt it’s jarring.

This is what happened after our son was diagnosed. Suddenly all the chaos went silent. In an effort to cope I’ve been cleaning the house non-stop and working continuously on our son’s occupational and physical therapy. I picked out decorations for the house and placed them appropriately. I’ve done some research into my next writing project. I’ve put in time at work. Today it finally hit home. There are no more emergencies. We may never rush off to the hospital emergency room again juggling calls from specialists and the pediatrician to determine if they want our son immediately admitted. From here on out our interactions with medical professionals are going to be routine. Straight forward. Normal.

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Beginning a New Chapter

November 3, 2015 By in Our Family's Journey Tags: , , , 2 Comments

Yesterday we went to see, what we expect to be, our son’s last new specialist. It was an emotional day for me because this felt like our last chance for new ideas. We left empty handed. All we have left to do is implement his care plan, which is straight forward albeit time-consuming.

Have you ever had the feeling you’ve hit the end of a chapter? Today feels significantly different from yesterday. Yesterday our son’s care plan still had the potential to change. Today we know exactly what we need to do for at least the next six months. While his care takes up the majority of my day, it’s a relief to know the load isn’t going to get heavier even if it doesn’t get lighter.

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