Change In Plans

Well, we are still here in Chicago so that was an unexpected but really welcome change in plans! We have decided to stay in Chicago and only travel to Seattle for the week surrounding her appointments. The plans have been a bit nebulous for some time now due to a lot of logistical factors but we are comfortable, at this point, with staying together as a family in Chicago. This is mostly due to the fact that Ava is running around, playing, and looking very well these days! Another reason why we have chosen to stay is because Ava will be getting her GVHD workup done at Lurie's which will consist of a series of evaluations that will check for any signs of the disease. By the time all of her results come in and are evaluated by both her Seattle and Chicago team we will be so close to our September appointments anyway. 

In any case, thank you so very much for your unfailing prayers and love for our family especially as we navigate the different issues that come up with Ava's health. And even though our plans don't always work out the way we envision, we truly have been cherishing the unexpected twists and turns because we know that God orchestrates our steps and we only need to follow. It does take a big load of anxiety and regret off our shoulders! 

Every day has been so filled with joy as we hear the girls laughing together and running through the house terrorizing their brother and their dog. I recently got so mad at the mess that they made in EVERY SINGLE ROOM of the house that I ordered it to be all cleaned up. I mean, I draw the line when I find packing foam in my really nice teacups. 

"But that's the nest for the hen," she said. And sure enough, there was also a little white hen that I didn't see, stuffed deep in the cup. And my anger dissipated and turned into wishful thinking...if only they would forever play under the table and near the china cabinet, slipping pieces of foam and other treasures into places I will unexpectedly stumble upon during a cleaning frenzy. But these days will also slip away and I tell myself this as I put the packing foam back into the teacup and shut the cabinet door. There will be a day that I hold my breath and peer into that same teacup hoping to find a piece of my girls' childhood and instead will just see a boring cup filled with only the memories of this crazy hectic life.

I tell my girls this as often as I can, that truly, these are the best years of my life. These loud, sleepless, chaotic, busy years of raising them have been my small tiny piece of heaven on earth and it makes me raise my hands back up to heaven, thanking Him for the gift of being their Mama. I tremble at the responsibility that is entrusted to me, but I laugh with delight at all the blessings that have flowed from the beautiful, mundane, and holy moments of life with them.

Thank you for your continued prayers! This week we ask for specific prayers for upcoming procedures and evaluations for the girls.

Tuesday: Gwen will be seeing an endocrinologist at Lutheran General to discuss the two cysts near her pineal and pituatary glands. 

Wednesday: Ava will have a clinic visit, a CT scan, and an ophthalmology exam to assess for any signs of GVHD.

Thursday: Ava will have her Hickman line pulled!!! YAHOO! I can't believe the day is finally here. This is the line that has served as a way to get medicine straight into her bloodstream. It was also how she was able to have so many blood draws this year without having to be poked. This is such a monumental moment for her as it is one step closer to being one-year post transplant. Ava is scared for all the future blood draws that will require pokes but we celebrate the milestone that she has reached!

Thank you again and again!