Tuesday, November 5, 2013

MEET EZRA: "NORMAL"


Normal is such a loaded word. Things have been FAR from "normal" around these parts for the past 6.5 months, but we catch glimpses of it every once in awhile. Like last week when we got to dress up the kids for Halloween. We didn't get to do some of our usual stuff, like trick-or-treating with our friends and hundreds of other kids downtown (that would have been WAYYYY too much exposure for Ezra), but we did make it to a few houses in the neighborhood that evening. A couple months ago, we weren't quite sure what the holidays would look like for us this year...but they're starting to look a LOT better than a little baby hanging on for dear life after undergoing aggressive chemo and a bone marrow transplant, spending many months in a hospital room, and many more months away from home (and from each other) near the hospital in case of relapse...and words cannot express how much easier we can breathe knowing that we shouldn't be experiencing such circumstances any time soon!

The exciting news from last week is that Ezra got to go off his chemo meds, praise God! The oncologist was really happy with how well Ezra's counts and spleen have been responding to the chemo over the last couple months...so now we get to go off of it and see how things go. If his counts continue to look good, we should get an ENTIRE month without oncology appointments! (We'll be able to get bloodwork done at the lab down here in the meantime). Because the chemo was so effective, Ezra's white blood cell counts have gone from incredibly high down to the lower end of the scale, so the oncologist wants us to remain vigilant over the next few months as Ezra will be more susceptible to infection (especially since he won't be able to get a flu shot or other vaccinations until the chemo is completely out of his system and his counts have normalized). So, our life can't quite resume to normal yet...but we're getting closer.

In other news from last week, the doctors did ease up on their concern over Ezra's weight now that he has his Noonan Syndrome diagnosis and we can measure him on NS specific growth charts. It was so good to finally have them able to see Ezra's "dot" comfortably in the middle of the percentiles instead of trailing down, out of range (on a normal chart). We still have a LOT of improving to do in the growth department, but now that bone marrow transplant is postponed indefinitely, we should be able to work at a slower pace. To get a better idea of how tiny Ezra is, here is a side-by-side of Judah and Ezra in the Beaver costume I put together for Halloween when Judah was a baby...Judah is 3 months old in his photo and Ezra is 6 months. Of course it's not a perfectly fair comparison since Judah has always been in the 90th percentile or higher for height, but, you get the idea.


So pretty good news all around! Ezra is still on a lot of medication (mainly for his GI issues), we still have many appointments on the horizon, and many obstacles to face (and conquer!), but things are looking much better than they have at many times during this journey. We are continually humbled and thankful for the outpouring of love and generosity we have received (like the Papa's Pizza fundraiser yesterday). I say it on Facebook all the time, but in case you only follow along via the blog or CaringBridge, we SO appreciate your support...it has helped and continues to help us with co-pays, prescriptions, gas, meals, etc...and allows us to take our attention away from finances to focus on caring for Ezra and his ongoing medical issues...it is a tremendous blessing. Thank you for continuing to pray for Ezra and our family. We have such a long road ahead of us, but each day we start to gain a better grasp on our new normal, and we are so hopeful that things will continue to improve for little E.


2 comments:

Katie Andrade said...

So happy you're off Chemo!! Hope that he continues to stay stable/head in the right direction! Praying for health for you guys and resolution of any/all issues medically! Also for weight gain. We understand the struggle! If Lilly/Logan wore the same outfit we'd have an exact replica of this photo, Lilly and Logan are 6 months apart but Lilly was always in the 90th percentile as well! Hard not to compare! But big or small package they're both adorable!

Jonathan Hansen said...

Praise God! We will keep praying for our dear little cousin, day by day. May God continue to bless him and the whole Parker family.