Monday, October 28, 2013


Scatterbrained and sleepy eyes = a bulleted list of updates :)
  • If we're friends on Facebook, you probably saw our biggest news of last week: Ezra gained some he's up almost a WHOLE pound since his growth stopped back in July! For those interested in numbers, he weighed in at a whopping 12 lbs 15 oz. 
  • This weight was taken at Ezra's six month check-up. The scale there tends to weigh a bit on the heavy side, but this was a big gain for the little man, so we're hopeful he'll still show a sizable gain when we head up to Doernbecher's tomorrow. 
  • The six month check-up went well. Ezra is right on track developmentally (hooray!!!!) and we were finally able to start talking about Ezra's health in the context of a confirmed diagnosis, which is so much more productive for all involved.
working on sitting up!
  • We also had a follow-up appointment with our G-tube surgeon last week. Again, if you were on FB, you probably saw that I "got to" use silver nitrate around the hole in Ezra's belly at that appointment and change out his tube. There was no warming me up to do this, it was just, "Okay mom, you're going to do this, I'm going to tell you what to do..." YIKES!!!!! Nothing like being thrown into the deep end head first. If you know me, it was actually much better this way. There was no time for me to get all worked up and worried about it...and I do fabulously well under pressure (how else could I have coordinated all those weddings!? ;)
  • I guess I haven't said so in a while, but even though Ezra is on a continuous drip feed throughout the night, we are STILL breastfeeding, hooray! I have never fought so hard in my life to keep doing something as I have to continue breastfeeding Ezra. (It is just now occurring to me that I won't be able to have any Halloween candy this year because of Ezra's dairy allergy, what!? Lol). It will probably continue to be a battle as far as doctors are concerned because of Ezra's "failure to thrive," but now that we can start measuring Ezra on the NS growth charts, they should start evaluating him a little differently.  And no matter what, we will continue to fight for what we believe is best for the little man.
  • While we are so thankful to finally have a solid diagnosis, our day to day lives haven't changed much. Ezra is still on chemo medication at home (and we have to administer four other doses of medication via tube each day), he's still puking...A LOT, we still have a strict limited exposure rule in place, we still have a TON of doctor appointments. The reality is, things are probably going to get worse before they get better (we're sure we will be adding more specialists to our already long list which means even more appointments, there will be more tests to run, more surgeries to go through, etc, etc)...but we're confident it will eventually get better...even if that just means us getting used to all of this being our new "normal."
play time with big bro, Judah
So sorry this update is all over the place! Josh and I haven't been getting much sleep since the feeding tube was placed, so it's getting harder and harder for me to gather my thoughts. We have a very long day of appointments ahead of us at Doernbecher's tomorrow. We should have a lot more info after those appointments about what our plan will be going forward as far as JMML and NS are concerned. Ezra will have gone three whole weeks without blood work (I think that's a record!) so we are getting anxious to know what those numbers are and are hopeful we can talk about discontinuing the chemo medication (as long as his counts look good and his spleen is still under control).

We are continually humbled and thankful for your prayers, love, and support. Thank you for blessing our family throughout this journey!


Laura Perez said...

We will be praying that you can continue breast feeding. What a blessing! And praying that things will get easier soon, and that Ezra can ease up on the chemo!

j & e's gamma said...

as always, i'm so very thankful you take the time to update this blog because i always learn something (as busy & exhausted as you are, where exactly you find this time, i'll never know!) i continue to be amazed by your ability to step up and do whatever has to be done for your little guy. nurse, pharmacist, dietitian, and so much more... to say you are a great mom, is such a huge understatement! hang in there, there is always light at the end of every tunnel! i KNOW he will get better. i BELIEVE he will thrive. i am ABSOLUTELY SURE you and josh are the reason. LOVE you all more than words can express.