Posted 2015-10-03T05:59:11Z

October 2, 2015: Happy Birthday, Edward!

Today Edward turned three years old.

It's been eight months since I've written, and a lot has happened. We've been to Canada, camp meeting, Maryland, General Conference Session in Texas, done a total of six weeks of nightly evangelistic meetings, had a baby girl, and moved from Muskegon to Kalamazoo. Not that that excuses going eight months without updating this site! Of course, Edward has had a lot going on, too. He's had ten infusions of IVIg and two regularly scheduled scans to check for the cancer, plus more physical/occupational/speech therapy sessions than I felt like adding up.

Here are the great things:
- He's walking and even running without his walker! He was able to pass it on to his cousin James, who loves it and uses it every day.
- He's trying to talk more.
- He really loves his brother and sister.
- A recent assessment showed no cognitive deficits.
- His cancer is still gone.

Here are the not-so-great things:
- His language skills were at their pinnacle in early July, but have since deteriorated. He talks a lot more than he used to, but his articulation has gotten poorer, so we have a hard time understanding him, and we usually can't.
- We, along with Edward's doctors, started stretching out the time between IVIg infusions. His infusion was every three weeks, so we moved it to every four weeks, and he was doing so well that we felt invincible, talked about taking out his port soon, and moved his IVIg interval to six weeks. Sadly, he started exhibiting OMS symptoms--falling down, tremors, weepiness/rage, sleep disturbance, drooling, and loss of language skills. He's back down to a three-week IVIg interval, and we will keep hoping and praying that he'll get back the skills he lost and that we will one day be able to wean him off the IVIg.

Something helpful our speech therapist introduced us to that can help when Edward is in regression is the LAMP (Language Acquisition through Motor Planning) app on an iPad. It allows him to push a button with a specific picture and hear the iPad tell us the word he's trying to convey. While we only got to play with it for about a month before we moved, Edward took to it better than the PODD and used it to say things enough times that we know he understands the concept. We're hoping to continue that when we get him set up with therapists in Kalamazoo. It will not be his primary form of communication, but would be so helpful for when he regresses, as is his pattern.

It's late, so I can't make this as long as I'd like to after an eight-month hiatus, but I wanted you to know that I started writing several times, and that one of the reasons I never finished was that Edward kept getting better and then getting worse over and over. I was tired of the ups and downs and I was tired of dragging you on them with me. We have seen God's leading so clearly this year, even in the down times, and we know He has a special plan for Edward's life. We're grateful for your continued prayers for Edward, even when we didn't update the site. They mean a lot to us. I'll sign off by posting just a few pictures, and wishing you a very meaningful and family-filled Sabbath. Jesus is coming soon!