|LOVE this blurry phone pic :)|
Right now our lives are in limbo. Most mornings we wake up in utter disbelief. The fact that our child has been given either a 50% chance to live or a bit better odds, but accompanied by lifetime of health problems, is a harsh reality to face each day. Not knowing whether or not Ezra has Noonan Syndrome, or if we will be heading to the hospital at a moments notice for a transplant, is definitely our toughest test in patience thus far. For the time being, our insurance company has decided not to cover the Noonan Syndrome testing. Dear insurance company, would you like to pay for A) some genetic testing or B) an immediate bone marrow transplant and approximate 3 month hospital stay? The answer seems pretty clear to us! Hopefully they can be educated on the importance of these test results and come through for us...in the meantime, the test is still being processed as it should be, so we are thankful for that.
A couple weeks ago we learned that Ezra's numbers were looking GREAT. I mean, we weren't even sure the doctors were looking at the right child's bloodwork the numbers were so good. AND, the size of his spleen had reduced dramatically. So, the at-home chemo has been working, hooray! Unfortunately it's also working to make Ezra puke more than usual. When I say puke, I'm not just talking about spit up. I'm talking about volcanic eruptions of vomit out the nose and mouth. Imagine your child, scratch that, your tiny baby, having the stomach flu every.single.day. Sometimes with a split second of warning, sometimes with no warning at all. It is a nightmare to witness, I've never seen anything like it, and it makes us so sad to see him go through this...it's not fun to clean up either. Thankfully over the course of five months (he's been puking like this since his first week home from the hospital, long before chemo), we've wised up and started carrying around a puke bucket (thanks for the suggestion, mom ;)
With all this puking, the hope was that the feeding tube would help Ezra pack on some extra weight. So far he is up just a couple ounces and we're left feeling like we're running a small hospital out of our home for no reason some days! We're SO thankful for our nurse/dietician friends who we can bounce questions off of so we don't get scolded by our doctors for messing things up too much. We're definitely looking forward to the day things start running a little more smoothly and Ezra starts to grow again.
I think that's all for now...I could continue to write for days because this little guy has more health issues than most of us will have to face our entire lives, but we'll call it good for tonight. However, no post would be complete without a heap of thanks. A HUGE thank you to Josh's co-workers for not only starting the weekly bake sale I mentioned in the last post, but this past week put on a golf tournament with the proceeds going to our family. We are completely blown away by their generosity. We have also continued to receive other meals/gifts/donations/encouragement...many from friends and family, and many from people we hardly know (or don't know at all). Wow. Just wow. Again, we are blown away by your generosity...and we are VERY much behind on thank-you notes...hopefully we will catch up someday! In the meantime, you heard it here, THANK YOU from the Parker family!!! It is amazing the way a meal/gift/donation/word of encouragement can bring some light to the gloomiest of days. Our hope is that someday this will all be behind us and we can pay forward your generosity, love, and support.