Update – More Testing Needed

July 26, 2016 By Ashley Bergris in Noonan Syndrome-Like Disorder, Our Family's Journey, Uncategorized Tags: bleeding disorder, clotting factor, hematology, medical Leave a comment

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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Live Happier. Here’s HOW.

June 2, 2016 By Ashley Bergris in Caregiver Health and Wellness, Uncategorized Tags: Acceptance, emotional support, gratitude, Happiness, howto, self-awareness 3 Comments

I don’t reblog often but this post touched me. I hope it lifts you up as much as it lifted me.

thehappylife101

I want to share with you 4 key points that I have learned in order to live a happier life. Believe me when I say that I am still trying my very best to adapt these everyday, and sometimes I fail, but what’s important is I don’t stop trying =)

1. ACCEPTANCE

“I’m okay with what I ultimately can’t do, because there is so much that I can do.”-Sam Berns

It’s our automatic response to make excuses when we are afraid to fail at something that we really want to achieve in life. We can come up with all the reasons that hinders us from doing what needs to be done. But we need to be bigger than our limitations! We should focus on the things that we can control and change.

2. GRATITUDE

“We have a choice. Either to be angry for what we don’t have, or be thankful for what we do have.”-…

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Back on the Curve

May 10, 2016 By Ashley Bergris in Noonan Syndrome-Like Disorder, Our Family's Journey, Uncategorized Tags: Failure to thrive, feeding tube, tube weaning 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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