Monday, July 1, 2013

MEET EZRA: WAITING GAME


We just went an ENTIRE week without going to Doernbecher's! *Giant sigh of relief* I was battling a nasty cold all week, and it was a huge blessing that we didn't have to make that physically and emotionally draining trip up to Portland (it's really hard to remember the last time we went a whole week without having to make at least one trip up there). Our pre-authorization went through more quickly than expected and we were able to have blood drawn for the latest round of genetic testing (for Wiskott-Aldrich syndrome (WAS), see previous post) at our weekly CBC appointment. Ezra just had to endure one poke as they took their time and were able to get a good stick on the first try. So now, we wait. Results will take 4-6 weeks.

As far as the CBC goes, Ezra's white blood cell count was through the roof (40), hemoglobin only dropped from 9.9 to 9, and platelets were at 71 (up from 49 the week before). The hemoglobin and platelet count were a bit of a surprise as Ezra had woken up with increased blood in his stool that morning...I was certain we would be heading to the hospital for a transfusion later that day because typically the increased blood means his numbers are down...but THANKFULLY that was not the case. Still no where near where need to be, and still no explanation for the crazy high white blood cell count, but overall, some numbers we can live with...until the next CBC later this week that is.


As long as Ezra's numbers stay in a (relatively) safe range and he doesn't have any increased bleeding or bruising, we might actually have more of a break for the next couple weeks until we see the GI specialist again. I've been on the strict no-dairy diet for over 3 weeks now and I can't say that I've seen a huge improvement overall...it will be interesting to see what the next step will be if the specialist isn't pleased with the improvement either.

In the meantime, there's really nothing the doctors can do for us. It's pretty clear they are all stumped. It seems like WAS testing is a last-ditch effort for them to try to diagnose Ezra. If the tests come back negative, I think we'll have to start looking for somewhere else to help us...wherever that may be.


It's super frustrating just sitting here waiting for the results. We wish we could already be on to the next hospital or doctor who could help our sweet boy...but after all the running around during Ezra's first 10 weeks of life, I suppose having a little bit of downtime will be good for all of us.

We can't say enough how much we appreciate your continued love and support. We have such a backlog of thank-yous to write...please don't think we haven't GREATLY appreciated your generosity, we're just now coming up for some air and will try to catch up soon!! Please keep praying for a miracle for sweet little Ezra and patience for us as we wait for answers.


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