Wednesday, June 19, 2013

MEET EZRA: MORE TESTS, MORE WAITING

Josh and his mini me :)
First, to follow up on the GI scope, the biopsies didn't reveal any additional info about Ezra's issues. So, based on the visible ulcer-like spots in the intestines and inflammation in the stomach, we are still assuming Ezra has a milk protein allergy and I am on a strict no dairy diet indefinitely. As much as I miss eating from my favorite food group, breastfeeding is SO important to us, and we believe, the best thing we can be doing for Ezra. The annoying thing is reading labels for the not-so-obvious dairy containing ingredients and being SO scared to eat anything I have not prepared myself...paranoia is no fun! But, I'm sure I'll adapt in time and dairy-free will become my new normal. We will follow up with the GI specialist in a month.

Now, yesterday's appointment. Since most of Ezra's test results have been normal and all the experts seem to be scratching their heads about our little guy, our next specialist visit was to a geneticist (we are up to four specialists now). After a bunch of family medical history questions, reviewing Ezra's medical history, and another examination, we had yet another specialist scratching his head. Ezra just doesn't look like anything is wrong with him. However, "after some digging," the doctor came up with one possible diagnosis...probably the scariest one yet. The disease is called Wiskott-Aldrich syndrome (WAS) which is an immunodeficiency disease that occurs almost exclusively in males. "It affects the function of the white blood cells, making these patients susceptible to serious infections. There is also a significant reduction in the size and number of platelets...Affected patients show a wide variation in the severity of the disease. Severely affected patients typically have excessive bleeding, are at risk of serious infections, have eczema, and are at a high risk of developing autoimmune disorders and certain types of cancer." Yikes. You'll  have to click the link to read more about it.

Although we have NO idea what is wrong with Ezra, we are NOT jumping to the conclusion that  WAS is what Ezra has. The hematologist has never noted that the size of Ezra's platelets are small, Ezra seems to be producing a normal number of platelets (according to his bone marrow biopsy), he does not have eczema, he has not had excessive bleeding...and there are other characteristics of the disease that just don't seem to apply to Ezra. Does he maybe have a more mild form of the disease? Possibly. But like I said, we are not going to jump to this conclusion. And even if we wanted to jump to this conclusion (why would we!?), we can't. It will take up to three weeks to receive authorization from our insurance to get the test ordered and once the test is sent out, it will take another 4-6 weeks for results. And as luck would have it, Josh's insurance is changing the beginning of next month, which means that we probably won't be able to get the ball rolling on this until July 1st. So, we're talking about 2+ months of waiting to see whether or not this diagnosis is a possibility. I'd say Josh and I are pretty patient people, especially considering everything we've been through so far... but it's safe to say this is certainly going to test our patience in a big way.

Since starting this post, we've gotten a call from the hematologist about Ezra's CBC yesterday. Unfortunately the huge increase of platelets last week (it jumped up to 120/93) seems to have been a fluke. Ezra's count is back down to 49. His white blood cell count is still super high. And now his hemoglobin level is quite low (for the past few weeks Ezra's number has been around 13, but it is now down to 9.9 - if it goes under 6, he will need a transfusion). Sigh.

As hard as it is to remain positive through all of this, like I mentioned on Facebook last night, we are counting our blessings that Ezra is as healthy as he is. We have seen so many children up at Doernbecher's in much worse shape. We continue to remain hopeful that one of these days, Ezra will be as healthy on the inside as he looks on the outside, and we can put all of this behind us! In the meantime we are praying fervently for an extra measure of patience, peace, strength, courage, and so many things that we need to get us all through this incredibly trying time! Lots of love to all of you for continuing to pray for Ezra and for us...you are a blessing.

Big brother Judah has been such a trooper coping with all of Daddy & Mama's time away with baby brother.

1 comment:

Janine the Bean said...

I will continue to lift you up in my prayers. That little baby is such a blessing. I can't imagine the trial that all of this is to your family. But I ask that the Lord bless you and keep you; the Lord cause His face to shine upon you; the Lord be gracious to you and give you peace...forever.