July 2018 Recap

We've had lots of fun in the sun all over Washington state this month. Job considers himself one of the big kids and doesn't slow down much. We've learned lots of tricks to make him take breaks but he's pretty stubborn these days.

The hardest thing right now is finding an appropriate balance of when to hold him accountable to what we ask of him (stop running towards the street, don't throw blueberries on the ground, no car keys, etc) because so often his response to a "no" turns into pretty scary breath-holding, purple-faced screaming fit. We can't actually let him cry even for a few minutes without medical repercussions... But we can't let him have or do whatever he wants either.

Our older boys were such early communicators that we didn't experience the "terrible twos" (age three was much harder than two!), so this stage of parenting such a strong willed toddler who struggles to communicate is definitely challenging. How do you parent special needs appropriately? So far lots of tears and uncertainty and prayer.

We got our schedule for Job's remaining evaluations. This week we see GI and then next week we see Heart Failure and Transplant twice, then pharmacy, infectious disease, dentistry, social work, psychiatry on Monday... and then two days later see nutrition, cardiothoracic surgery, anesthesia and then radiology for chest x-rays and two sets of 3 hour ultrasounds (one upper body and one lower), plus several labs. These will be very long days but it will be so nice to see so many specialists in a close period of time so as to be able to ask follow up questions to each discipline.

All of the data they've been collecting on his eligibility will then be presented to the selection committee at one of their Wednesday afternoon conferences (probably on August 1st).