AFTER 100 DAYS- WILLEM IS HOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

We are happy to let you all know Willem came home today at 3:00 pm. He is with Mom, Lili, and Wyatt and will sleep in his own bed tonight! What a joyous day this is for our little HERO. The last few days have been frustrating as we have been working to get discharged. First there has been a lot of work with the insurance companies and this finally all got resolved this morning.

On Tuesday we had bought a cake and a card for the 9th Floor staff and were going out to present these to them at their work station when Willem's stomach tube port was pulled out by accident by me! If you have ever done something and felt like crawling away into a cave that was me then.

Fortunately the nurse was in the room and she got the tube itself reinserted into his stomach but the port itself had to be reinserted by procedure and the tube positioned back into his intestine. This was done later that day. All was ok until Weds. morning when we all noticed the discharge from his stomach was too light colored suggesting the tube had worked it's way out of his intestine and was in his stomach. Another procedure was scheduled for Thursday under complete sedation. This proved to be successful. Jeff and Jeff the "Pros from Dover" in XRay Fluroscopy are to be commended. They had to get the tube past the stricture in Willem's intestine which proved a challenge, one they surmounted with great expertise.

Needless to say I was not Willem's favorite grandfather or for that matter, person when it first happened. Kids are so resilient and forgiving (we have learned a lot about such behavior from Willem during this time) that we were back on track that evening when I went back and just hung out with him until he fell asleep. He is an awesome kid for sure.

The staff made a big sign and they signed it with personal notes and this will be hanging at home.

Tonight the HomeCare nurse comes over to the house to review a bunch of stuff including medicine delivery, the equipment, etc. with Erin and me. It is all a bit daunting but doable.

We hope to get Willem to school for a short time each day starting Monday, but we have to see how all it goes over the weekend. School is ready if we do this. They have been great to work with.

BIG DAY FOR SURE. He is not healed of the ravages of this HLH disease and they are some obstacles that have to be overcome. We need your thoughts and prayers as he enters this next phase of his recovery.

Erin will need some help with all of this. We're not sure how it is all going to shake out so stay tuned. We will let you know what is needed in a later blog.

We are truly GRATEFUL for so much, and the thing we are most grateful for is the recovery to this point of our HERO Willem, the world's greatest 10 year old on the face of the planet, the moon, the stars, the planets, you get the picture!

Think of you have done the past 100 days. This might put into perspective how long he has been in the hospital. Take care friends.