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