Friday, July 26, 2013


Yesterday we made our first trip down to Springfield with Ezra for our followup appointment with the GI specialist who performed the scope on Ezra (back on 06/11/13). She is able to travel from Doernbecher's to a clinic at Riverbend a couple times a month - it made for a MUCH shorter day only having to drive about 45 minutes each way which was much less exhausting than the marathon trips up to Doernbecher's. The visit went pretty well overall. Thankfully Ezra pooped while we were there so she got to see it and thought it looked decent. Since we have been obsessively studying each and every bowel movement Ezra has had since the first sign of blood 10 weeks ago now, it was really important to me that the specialist actually got to see his stool since up until this point it's all been hearsay.

It's been almost two whole weeks since I've gotten to nurse my sweet boy...torture for him, torture for me (I'm telling you, interrogators should use a breast pump to get the answers they are looking for, their subjects would cave in no time!). I'm supposed to be pumping 8 times a day but I'm doing good to get in 6 rounds. It's incredibly time consuming and difficult to fit in the day while caring for a 3 month old and 3 year old. But, there is light at the end of the tunnel, hooray! The doctor says I get to try breastfeeding in about two one more weeks to see how he handles the milk after a month three weeks of gut healing on the pure amino acid to my ears!!! Then we go from there. Like me, she would really like Ezra to be getting the antibodies from my milk (what I've been thinking/saying all seems so obvious), but he's such a sensitive little guy we still don't know if he'll be able to handle it. She knows that I'm willing to eliminate more from my diet in addition to dairy, so I imagine I'll need to go off soy again and whatever else I need. She's a bit concerned about his vomiting so we may need an upper GI/barium test done, she days the procedure can be done at Riverbend if it continues.

Our pediatrician has already sent a referral up to Seattle Children's Hospital for Ezra. The GI specialist is definitely in favor of us going up there as well, and thinks the hematologist should also refer us to an immunologist. In her words, she thinks there's a bit of a gap in the type of care/attention Doernbecher's is able to offer someone like Ezra, and thinks it's time we go elsewhere. After three months with no diagnosis we couldn't agree more! We are thankful Doernbecher's is around and that we have been able to have the procedures Ezra has needed done within our own state so far...but he really needs more attention than they are able to provide him within their areas of expertise.

In the meantime, we are STILL waiting for the WAS results. We are rechecking blood counts every one to two weeks (Ezra's platelets have seemed to plateau in the 70,000 range for the past month, white blood cell count is still through the roof, and hemoglobin is still very low). We will now be checking Ezra's weight at the doctor's weekly, or every other, to make sure he is gaining enough on the formula (but I am definitely crossing my fingers that we'll be back to breastfeeding as planned in two one weeks...and he's never had trouble gaining weight on that).

Three months has been such a long time to go without a diagnosis but we are starting to realize it might be much longer before we have answers. Thank you for your continued love and support. We definitely continue to need all the prayers we can get...this waiting game is not easy!

And because no update is complete without a picture, look at this cute little side-by-side Josh put together of the boys (both at 3 months, wearing the same onesie - Judah on left, Ezra on right):

1 comment:

Kim said...

Please please let us know if there is anything we can do should you get sent up this way.Children's is truly an AMAZING hospital we are so lucky to have in our own back yard. I have helped with one of the radio station that dose a yearly fundraiser and feel so amazed by all the stories you hear, many of my friends have been there with their kids, you will be in great hands. I think they have places for families to stay while you ate having testing and things so check into that too ok... and they never ever turn anyone away