So, here's the update. It was a frustrating week. Coordinating all of Ezra's medical care is something we have been doing for nearly 5 months now, but it never seems to get any easier. Especially with new doctors and specialists added to the mix. This week was all about trying to get Ezra's feeding tube surgery scheduled. Josh fielded most of the phone calls...it's a wonder he's still sporting a ponytail because I know he wanted to pull his hair out after about the hundredth call. Long story short, Doernbecher's surgery department has recently undergone some restructuring and hasn't quite put all the pieces back together...so we have been referred down to Sacred Heart. We have a consultation down there tomorrow and Ezra will have surgery there on Wednesday. Please send extra prayers that day. Ezra hasn't been doing so well with his at home chemo as of late. He wants NOTHING to do with one of the medications and his puking has really picked up. As much as we have wanted to avoid the feeding tube, the time has come.
In other bummer news, we never received the test results we thought we would receive last week. You would think by now we would have learned that any kind of genetic testing is NEVER done when they say it's going to be done...but wishful thinking often gets the best of us. We also learned that depending on the results of said tests, we may have to start additional genetic testing that will take at least another six weeks. We'll just cross that bridge when we get there, though, because the thought of sitting here another six plus weeks waiting for test results does not sound like fun at all.
In the meantime, this is what our life looks like these days:
"Thanks for stopping by," but sorry we cannot have visitors right now
sign at the front door. (By the way, thanks to all who have signed up to
bring meals...they have been a tremendous blessing).
Reminders on the front and back doors to immediately remove shoes, wash hands, and use hospital grade sanitizer.
meds, medical gloves, syringes, etc on the top of the fridge where they
are far out of our three-year-old's reach but easily accessible for
Amidst all the frustrations and inconveniences of being housebound are many rays of sunshine...Ezra's adorable smiles and new found love of his toes...Judah's hilarious sayings and the sweet things he tells baby brother when he's crying...all of you who are praying for us and offering your generosity and encouragement. And, something that I haven't shared yet that has been such a tremendous blessing, is the way God put a sweet woman in our lives named Kasey. Weeks ago, a friend from Oregon now living in Tennessee shared Ezra's story and prayer request with her small group. When the 'JMML diagnosis' came up, another woman in that small group knew that she had to help get us in touch with her friend Kasey. So who is Kasey? Well, she's another 31-year-old woman like myself, clear on the other side of the country...and she is the mama of a boy named Ethan who is a FIVE YEAR SURVIVOR of JMML! Like Ezra, Ethan was diagnosed when he was just a tiny baby, he underwent a transplant shortly after, and now, in the words of Kasey, "is not only surviving, but thriving." Kasey doesn't just offer her own family's story of hope for our family, but she is a sounding board for our questions, our worries...just someone who can empathize with our situation in a way very few people are capable of doing. Thank you Kasey for being a ray of sunshine to us (and thank you Lindsay Lizotte, for voicing that prayer request weeks ago...words cannot express how truly grateful we are for the divine intervention that brought Kasey into our lives...through you!).