25 Apr When Mama’s away…
Daddy and Keegan will break all the rules and have LOTS of fun doing it, evidently!
This past week, I was privileged to spend three and a half days at a conference and intensive training seminar held by the Institute for Family-Centered Care as a family advisor for Children’s Medical Center. Luckily, it was held here in Dallas, so I didn’t have to travel or spend one full day without seeing my Bug! I was asked to go to the seminar as part of a team from the Heart Center. I can’t tell you how encouraging it was to see some of the positive change that is happening across the country (and world, for that matter) that truly makes patients and their families true partners with healthcare personnel in their care. We are off to a great start at Children’s, but we have SO much to do! The highlight of the week definitely came Monday morning, when I was asked to participate in a panel discussion before the entire conference of two family members (myself and Avery’s mom, Angie) and two patients. I was able to share Keegan’s journey with them – the good and the bad – and inspire even more change. It was a long week for me, for sure, but equally transformative.
Gray and Keegan had quite the week too! Very important things, like…
Putting practice with Big Daddy…
Learning how to rake the sand trap after your swing…
Or using the whole body approach instead of a rake…
Throwing balls on the chipping green…
And more golf cart driving practice…
Visiting Oma at Southwest Airlines headquarters (the red armband and ankle bracelet are from labs & his breathing treatment at the hospital that morning)…
Watching planes take off at Love Field…
Sitting in the bluebonnets while visiting Great-Granny…
Getting lots and lots of lovin’ from family….
And being so thankful for three and half days of fun times with Daddy!!
(Oh, and in case you were itching for a medical update on Keegan, his weight was stable this week, so he earned at least a few more weeks off daytime tube feeds! It has been such a change for me not having to deal with the tube or anything during the day but so very nice! I’m looking forward to Keegan continuing to progress in eating orally and staying off the daytime tube feeds for good. His labs also looked good this week, and I think his hematologist is right – the more his intestines heal, the more real food he eats, the better he absorbs what he eats, the better his bone marrow will perform! I guess nutirition really is everything! His immunosuppressant levels were off yet again this week, so he will have another set of labs next week. Nothing we can’t handle though. The only bad thing right now is that his allergies have kicked back up (who’s haven’t though?). He’s runny and congested, and it’s hard to keep him inside with the pretty weather we’ve been having. We are praying this bout is short-lived and that he is back to his energetic, happy self soon.)
Lastly, we have our last sonogram at the high-risk OB tomorrow to get a good luck at baby Audrey and make sure she’s doing well. We’re sure things will be great, but we’d appreciate your prayers for our little girl nonetheless. Thanks so much.