Posted 2014-07-16T04:19:21Z

July 15, 2014: A Busy Summer

It's been a long time since I've posted--sorry about that! We've had a really busy several weeks, with a lot of traveling, but now we're home, unpacked, and back to our new normal life. It's wonderful! Henry and Edward are doing a lot of playing with trains and blocks inside and rocks and dirt outside, Kameron is very busy with our Keys of Revelation seminars at Muskegon, and I'm getting the house back to normal and have a new artisan bread-baking hobby!

Edward is doing really well. He's sitting up a little straighter, crawling just a little faster, saying "Mama" and babbling more often, having fewer meltdowns, eating well, and just generally doing better. That said, he still can't walk or say more than one word, he falls a lot when he's crawling (his forehead always has several bruises on it), all his movements happen with a lot of shaking, and he still melts down into a screaming fit in certain situations.

With all the recent traveling, we've been around large crowds of people and have noticed that a lot of chaotic noise, especially in an enclosed space, will often send Edward into a screaming fit. We had several of those at different times when we were in a crowded cafeteria. Some of you reading this might have witnessed one of those miserable times, and we apologize for the ruckus it caused. When screaming fits (even occasional ones) become part of the new normal, it's hard for parents to figure out how to adjust.

Do we scoop him up and whisk him away? (Happens too often--when would any of us ever eat?)
Do we give in to what he wants? (Doesn't always work, plus it sets a bad precedent. After all, the disease makes him irritable, but it doesn't have to rob him of all self-control. He can learn.)
Do we tell everyone around us he has a disease that makes him act this way? (Sometimes we do that, although we admit it sounds like we made up a disease to explain away bad behavior).
Do we give apologetic, embarrassed looks to those around us and then just let him scream until he suddenly calms down, smiles, and starts eating? Yes, most of the time.

Edward has had two IVIg infusions since my last post. The most recent was yesterday, which also marked the 5-month anniversary of his first symptoms. He did very well, smiled and charmed everyone, and took a three-hour nap. It was a good infusion day. Every time he has IVIg, he also starts a 5-day pulse of Decadron (a steroid), which makes him cranky, though so far not as cranky as he was three weeks ago during Decadron Week, for which we are thankful.

One of the major signs that Edward is improving is his renewed interest in books. Before he got sick, he could look at a single picture book for 10-15 minutes at a time, turning pages and staring at them with interest. When he got sick, he lost his long attention span and with it his interest in books. It probably had something to do with his eyes rolling around uncontrollably, and how much energy it took for him to look at anything at all. In any case, in the past few weeks we've noticed Edward spending long minutes looking through books, again, and we are very excited about it.

Drs. Mitchell and Pillai are happy with Edward's progress and would like to wait a little longer to see if he continues to improve before we try more aggressive treatment. We are so grateful for our doctors. The more time I spend on OMS support group sites, the more I realize how good we have it. Many other OMS patients struggle to get a response from their providers, waiting days to hear an answer to a simple question. If we call the clinic, our questions are answered within minutes or hours. Edward's doctors know him very well and spend a lot of time talking to us about anything we're concerned about. Not only that, but they spend a lot of time researching the best way to treat him and discussing it with other doctors to make sure they're giving him the best chance they can. I missed a call today, and just listened to the voicemail as I was writing this. It was Dr. Pillai letting me know that Edward's lymphocyte count is good enough that he's no longer at risk for the very dangerous type of pneumonia, and can therefore stop taking Bactrim! God is so good to us!

Thank you all so much for your prayers and messages of encouragement. We are so grateful for the moral support. I know a lot of you don't hear from me personally as often or as quickly as you used to, and I'm sorry for that, but please know that your friendship and support mean so much. Sometimes we get caught up in the whirl of our life, but we always appreciate when you reach out to us. I still have a list of thank yous a page long, so some of you might get thanked 6 months or a year after the kindness you gave us, but we haven't forgotten you!

That's all for now. Here are some pictures of Edward having fun at his infusion yesterday, plus a few others from the last month...

Riding in style Riding in style #2 [June 12, 2014: A new way to ride--Edward takes it easy]

[June 13, 2014: Eating in the trailer at camp meeting]

Sabbath family pic
[June 14, 2014: 1st Sabbath at camp meeting]

Edward and friend
[June 16, 2014: Fun times with little friends]

Playing trains in the rain
[June 17, 2014: Playing with trains on a rainy day at camp meeting]

Airplane windows
[June 29,2014: Sharing a plane window]

Saucer swing
[June 30, 2014: Favorite swing, ever--no balancing needed!]

Henry swings Edward
[July 1, 2014: Henry helps push]

Happy boy swinging
[July 1, 2014: Henry's little hand and Edward's happy smile]

Edward pulls up Edward throws chips [July 1, 2014: Edward can pull up and stand holding on to something, but his favorite thing about a playground is to sit on the ground and throw wood chips in the air!]