Thursday, April 14th
Here are some pictures from our last two days.  If interested in more details read the journal below.

The best child life specialist and Kylies new friend.

Gregory the Yawkey House 

Baker by night, banker by day.

6 hours later arriving at the Yawkey House.

Kylie after 4 hours of sleep the night before literally 

collapses onto the hospital floor.

Boston Children’s Hospital

(3^rd trip)

4/13/16

Mom K, Kylie, and I headed out to the hospital at 10am.  The dilemma is do we go with the GPS recommendation and use the George Washington Bridge.  Anyone who travels this route says absolutely not.  Add the extra hour onto your trip to avoid traffic and take the Tappan zee bridge.  Well mom and I looked at each other and said hey we don’t need to be there at any particular time lets go with the GPS.  The sun was shining, we had our amazing little traveler packed in, and in less than 6 hours we pulled into our home away from home, the Yawkey house. 

The Yawkey house is similar to a Ronald McDonald house and is run through the hospital.  They have two homes and the trip before we stayed at the other one for two nights.  All though our experience was wonderful this one of the two is a huge colonial house verses more of a hospital/institution style room and building.  With more family coming this time around and the longevity of the stay having the extra rooms and space to hang out in will be delightful.

We needed to keep Kylie up till Midnight and then wake her up at 4am for a EEG test where she needed to be sleep deprived.  Can I tell you this is a painful experience for child and parent.    However the evening went amazingly fast.  More nights than not dinner is made or brought into the Yawkey house by organizations.  This evening a college group made marinated chicken breasts, salad, seasoned potatoes, and chocolate chip cookies.  This is a wonderful time to get to know other guests, hear their stories, and enjoy a home cooked meal.  After dinner we did a lot of walking, shopping at Trader Joes, and a café stop at Panera bread where Kylie and Grandma got quite silly in their exhausted state.  Back to the room we went about 10:30 to let her play till mid night.  Mom’s friend sent a gift that Kylie was so excited to open, which contained pajamas, bracelet, teddy bear, and a puzzle.  It’s over whelming the love and prayers from people who have never met Kylie. It became quite a chore to keep Kylie and myself awake the last 45 mins. but mission accomplished. 

4/14/16

It was brutal waking up less than 4 hours later to start the day.  Once again Kylie amazed me with a smile almost immediately after waking her. We took our time getting ready and about 5am headed towards the hospital.  We killed time at Star Bucks till the hospital cafeteria opened. Our day of appointments started at 7:30 and went till 3:30, including chest x-rays, waiting, blood drawn, waiting, meet with cardiologist, waiting, child life specialist, waiting, EEG, and well you have the idea.  Kylie had tears at times but over all was a total trooper.  So many blessings today:  huge helium balloon and lots of laughs with the child life specialist, Kylie fell asleep during the EEG, beautiful day for our walk back from the hospital, new friends over dinner with a family from York, PA (their little girl is 5 and they have spent a year and a half in ICU total during her life, cried as they claimed God’s goodness), a wonderful gentleman has been volunteering since 2004 coming in on Thursday nights to bake with the kids (more tears as I watched this distinguished, soft spoken, kind mans interact with the kids)  Going to bed feeling God’s goodness and presence though out our day!