Alex and Maddy

Alex and Maddy

Friday, February 17, 2017

Where do the weeks go?

I am not sure how my weeks fly by so quickly except that we are SO busy!

This past week was a week of trying to get back to normal. Alex left the house on Saturday for the first time since getting sick for anything other then a doctor's appt. We are lucky to be part of a group called HopeKids that offers fun activities for families of chronically ill children. Each month they offer a movie and this month was Lego Batman. Alex had really been wanting to see that movie so we decided to give it a go. He loved the movie and it was good for all of us to get out and enjoy ourselves, but he was wiped out by the time we got home. He is still napping a good 4-5 hours every afternoon!
Sunday was a quiet day except for church.
Monday Alex continued to relax while Maddy and I went to Taste Buds for our cooking class and therapy. This week we made Strawberry biscuits and they were delicious!
Tuesday was supposed to be a quiet day at home, but we got a call early in the morning from someone very important to us, asking a favor. Sonny Burgess is one of the kindest, most genuine men you could ever meet. He also happens to be a talented musician. After years of volunteering at Cook Children's, he is now an employee. In December, when he learned that Alex wanted to play violin, he graciously offered to be his instructor. Since Christmas, Sonny and Alex have met weekly for Alex's violin lessons. Sonny called Tuesday morning to let us know that he had won an award and they wanted to video him working with a patient. He asked if there was any way we could come to the hospital for a lesson that morning. After all that Sonny has given to us it was a no-brainer for us to head to the hospital. If you haven't seen the video on my Facebook wall, make sure to check it out. You will see what an amazing man Sonny is and how lucky we are to call him a friend! When we got to the hospital we realized that the video was being filmed by the same videographer that works with Zoey's trainer and had done an interview with us last April. Talk about a small world!

Wednesday it was back to the hospital for an appointment for both kids with our Metabolic Geneticist. We see this doctor every six months and it is always a LONG appointment. Trying to update a doctor on everything that has gone on with both kiddos for 6 months is not easy. After our appointment we were back to the recording studio to re-film an interview on our experiences at Cook's and how important Family Centered Care is. While Alex worked his magic in the studio, Maddy enjoyed some time playing and painting.

Yesterday Alex enjoyed his first "normal" activity in over 2 weeks as he went to his golf lesson. Maddy and I had an appointment with our beloved pediatrician about some concerns from her therapists and then a therapy appointment.

Today Maddy and I were back to Homeschool Co-op, but Alex was too tired to make it. It was so good to see friends and catch up.

Medically, Alex is definitely doing better. He is still struggling with fatigue and we are still working  to get his feeds running at our normal strength and rate after the pancreatitis. We are currently about 3/4 of the way up on rate and are at 1/2 the strength. We are praying he continues to improve each day.

We are so grateful for our "village". The love of our friends, families, doctors, nurses, therapists and child life staff keep us going during the rough times and help us enjoy all the good times.


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