Friday, May 20, 2016

Boston Trip Scheduled



Koal had another cardiology appointment here at Children's Mercy on Monday and everything went well, with nothing unexpected surfacing. This appointment was another follow up with an EKG and echo as requested by our team in Boston, in order to confirm all previous findings and make sure nothing had changed drastically. Koal was a trooper as always, sitting quietly (and still!) for the procedures. As we talked with Dr. Shah he assured us he would be in contact with the docs in Boston both before we go and as we're there. We talked about recovery and follow up and the timing of our travels, etc.  We spoke also of how and when they'll place Koalton on heart-lung bypass and what the duration of that might look like. It's definitely all starting to feel so REAL now...and so close.




After a number of date changes, we are officially booked to fly to Boston on June 20th, with Koal's surgery set for June 29th. He'll have about a week of pre-op appointments, labs and tests, as well as time to meet with our surgeon, Dr. del Nido, to talk through the procedure, recovery and everything in between. 

As I mentioned in my last post, there's comfort in the familiarity of having been though this before, with many things about Boston, the doctors and hospital, and even the surgical procedure not being completely new this time around. We've booked flights and are nearly done working through the details of accommodations. We will definitely stay at the Yawkey House (like we did in 2011) for the majority of our time in Boston and are waiting to hear if our other needed dates become available. (Prayer request: For room to become available at Yawkey that first week we're in Boston, June 20-28th!) Our flights are booked and things are falling into place here with my amazing parents coming to stay with Kade, Adry and Aily at our house while we're done.  We have rides to camp, Fourth of July fun and even lawn mowing all lined out for our time away! (Thank you Kelly and Brett,  Grandpa Paul and Grandma Mari and Rodney!) I'm so thankful that things are coming together and our prayers now are for the remaining details. For the God who knows the number of hairs on my head, this is a breeze. Help us to remember that always and rest in His presence as the "little stuff" (which so often feels like BIG stuff) is sorted out. 

Thursday morning we had an extensive evaluation at the Neurodevelopment and Behavioral Sciences clinic at Children's Mercy with Koal. We have no real concerns about his development or learning abilities, but they have a great program specifically for cardiac kiddos at CMH, and with a major surgery approaching and Kindergarten at Academie Lafayette starting soon, it seemed like an excellent time to have the testing done to establish a baseline for his cognitive skills, as well as make sure no extra support is needed now in any areas.  Everything went very well and the doctor had no concerns about anything at all! She said he scored very high in nearly all the areas tested, and the one thing she thinks he could work on is rhyming...SO, more Dr. Seuss books it is! Ha! 

Thank you, as always, for all your prayers and support for our sweet Koal, and our entire family.  We continue to be blessed by so many extraordinary friends and family who are coming around us during this time. The reality of Koal's surgery and our time away is starting to set in.  Thinking about surgery, reconstruction on his tiny heart, the stress of recovery and tubes and pain and so much more weight heavy on this momma's heart.  We trust a mighty God to continue to walk with us through this and help out little guy heal and recover. It won't be long before we head east, and my to do list grows daily preparing for the trip. Please continue to pray that the details will fall into place perfectly, with God's hands on every single one. 

ONE last thing...Koal had a little pre-school graduation ceremony this morning! He "crossed the bridge" to Kindergarten and we had a cute little gathering and lunch.  



Koal the Kindergartener!