Sunday, November 17, 2013


This kid has to be gaining some weight, right!?

If there was ever a good time in history to have a child with incredibly complex medical issues, now is that time. Thanks to Facebook, I have not only "met" amazing people like Kasey (who I first wrote about in this post), but I have more recently come to know some other mamas of little ones who are pretty much going through the SAME exact things we are facing with Ezra. One of those people is mama to a little guy who is just a couple months older than Ezra. He has JMML, he has Noonan Syndrome, and a number of other health challenges that parallel Ezra's. The other day she wrote about it being "feast or famine" with her little guy. The same goes for Ezra. And I am happy to report that the last couple weeks have been a time of feasting for Ezra...both figuratively and literally!

For starters, Ezra has been off his chemo meds for 2.5 weeks now...and when we got his labs done this week, his numbers were great! They're not totally normal, but for him, they're great. Such a relief. Ezra's counts have been known to fluctuate drastically from week to week, but we are cautiously optimistic that the worst of the JMML is behind us. Please pray that it is!

In addition to that, Ezra hasn't puked for well over a week. Words cannot express how thankful I am that he has had a break from the horrible vomiting he suffered for so many months. It could rear it's ugly head again at any time, but I am so thankful we've all had a break from it.

As for the literal feasting, Ezra is able to nurse longer (and take in more volume) than he has since he was a newborn. Now that he is off chemo and his spleen is back to a normal size there is more room for his stomach again, hooray! He also got to try his first solids this week. Since he has such a long history of an overactive gag reflex and frequent vomiting, we were very nervous that he was going to have a hard time even getting a spoon in his mouth, but he did so, so good. And because of his severe dairy allergy, we were also scared about new potential food allergies...but initially, he had no reactions to the rice cereal. Unfortunately a few days later he had some blood in his stool...but even as careful as I am, we think it's possible some dairy snuck into something I ate, and hopefully he's not allergic to the rice...that would not be good at all. Yikes. Please pray that he's not allergic to rice.

Ezra's first solids!

And because we love a good brotherly comparison, this was Judah's reaction to his first solids...

You might be wondering how Ezra's feeding tube plays into all of this. Let's just say that we don't want to get into trouble with any of our doctors or nurses, so we don't really want to talk about it right now (but feel free to ask us privately if you're interested) :)

Overall, such good news to report! We are hopeful that our times of "famine" are more a thing of the past...or at least that our times of feasting come along more frequently, and stay around for much longer! Thank you so much for the continued prayers. We feel like so many of them are being answered.


Morgan said...

:-) Good news, I will be praying for you guys!!

judah and ezras gamma said...

really, really, REALLY love this blog post!!! good job little man! I just know in my heart that amazing things are to come in your life. so thankful you have such good parents that keep such a careful watch over you. love you buddy!

Anonymous said...

Fabulous news, Parkers! Ezra looks wonderful, and like everyone else I am hoping and praying that the worst is behind you. Elizabeth, you have so much strength, compassion and love in your heart - you are an amazing woman! Your 3 men are extremely fortunate to have you in their lives! Happy Thanksgiving to all of you. Love, Penny

Penny Brassfield said...

OOPS! Anonymous is really me - Penny! This computer stuff is oftentimes beyond my abilities. Give me a good book any day!