Happy New Year! An update on William’s progress is overdue. Our last post was when he was 6 months old back in August, and now we are getting ready to celebrate his first birthday! These last 11 months have been the most challenging experience we’ve had, yet even more beautiful and rewarding.

Since August, William had his gastrostomy tube surgery, which went very well. We came home from the hospital with a plan to give him a bolus of formula every 3 hours. A bolus is basically the act of pouring a bottle of formula into his stomach over a few minutes. Much like a baby drinking a bottle. We quickly learned that William could not tolerate such a large volume of fluid at one time and he began vomiting multiple times a day. Most likely this is due to the way his stomach now sits after the surgery, his enlarged kidneys taking up much needed real estate in his abdomen and his reflux. We could not keep William hydrated enough at home and ended up back at Children’s Hospital to give him fluids, monitor his kidney function and investigate his constant vomiting.

Once back home we continued to tweak his feedings based on his vomiting. After lots of trial and error and weeks of what felt like continuous vomiting, we made the decision to place him on continuous feeds. This means he gets a slow drip of formula all day and night and must be hooked to a feeding pump. Continuous feeds is something we did not want to have to do, but it’s what William needs. That made the decision easier. It is definitely a lifestyle we are still getting used to. His vomiting has not all the way disappeared but is finally manageable.

About two weeks ago William decided to (mostly) start sleeping through the night. I can’t tell you how much this has changed our life. Almost 11 months of getting up with him sometimes 6 or 7 times a night had us all in a constant state of extreme fatigue and emotional exhaustion. Praise God for sleep!

Since September William has been going to “school” at The Bell Center twice a week. I think he is running for class President. He LOVES the social aspect of being there and would rather not do his therapy. Thanks to his therapists and all his hard work, he started crawling a few weeks ago and is on the verge of walking. His feeding therapy has not been as successful. There are a lot of different variables that go into his lack of eating, but we will continue to work on it. He has almost no appetite, and that in itself creates a huge hurdle. We will love him just the same if he never eats.

I know everyone is wondering about his latest kidney update. Leading up to this most recent appointment with his nephrologist I was nervous and tried to prepare myself for the news we would get. I know that eventually we will get bad news, that’s our reality. Not knowing when that will be is somewhat scary. God has already worked it out, we have to trust that. Thankfully, his last appointment brought good news and praise to God! His kidney function has remained stable since his last visit. He will be checked again in 3 months.

2017 has so much in store for us and we can’t wait to see how the Lord continues to use William. I wish every one of you could meet him and see how he radiates joy everywhere we go.

Prayer requests:
-William to continue to sleep through the night
-William’s kidney function to remain stable
-Therapy at The Bell Center, especially feeding therapy
-Strength for Matchett & me

Thank you all for praying and loving us!