September 7, 2014: Better and worse

[August 2014: Chalk drawing]

It's been a while! Since we last posted, we've finished a set of evangelistic meetings, spent vacation time with both sides of the family, and just lived a busy life full of things like getting cars fixed, collecting wood for the winter, and attending medical appointments.

Edward's condition is worse than when I last wrote. We've noticed a gradual decline over the last six or seven weeks. It's strange to read what I wrote, and realize that he was saying "Mama" so recently. I think he must've stopped saying it right about the time of that last post. In fact, his vocalizations in general have digressed into simple grunts, cries, and laughs. He has also learned to click his tongue, which is kind of fun and makes him laugh. He has developed a sort of loud, huffing grunt--like if you push all the air out of your lungs quickly while saying "HUH" in a husky voice--which he uses in times of special excitement, like when he sees a dog or a helicopter or a picture of a bear. Here's a video, so you can hear it--it's right at the beginning a couple times. If you watch the whole thing (it's kind of long--almost two minutes), you'll hear almost all the sounds Edward makes, minus the rage attack crying. VIDEO

The decline happened gradually. We measure it by little things, like the fact that his shaking has gotten so bad that we now have to hold his forehead while feeding him (to make him less of a moving target for the spoon). He can still pick up food with his fingers and put it in his mouth, but he's slower and messier and he no longer tries to grab the spoon and take over feeding. His opsoclonus (erratic eye movements) is increasing in frequency and severity. He's waking up more often at night, and taking more fitful and interrupted naps in the daytime. His extended, uncontrollable crying fits (known in OMS terms as rage attacks) have become more frequent and less predictable. Yesterday he had 6-8 rage attacks (it's sometimes hard to know whether to count something as a separate attack--for instance, if it happens three times in the space of an hour-long Sabbath School class, does that count as one or three?), many of them brought on by something as simple as the car turning a different direction causing sunlight to fall on his face. This morning I put him in his highchair and gave him a banana. He was smiling and picking up the banana until I turned to do something else in the kitchen and he went into full-blown screaming mode. It didn't matter that I reassured him and came right back to his chair. Kameron got him out of that one by popping in the pacifier and playing the piano, but often we just have to wait until he calms down on his own, because nothing else works. 

I don't want to give the wrong impression--in between attacks, he's the sweetest, most charming little guy you'll ever meet. He's not an unhappy person at all. We saw some deer in our back yard this morning and he was so excited and made his funny sound and crawled over to watch them at the window. He smiles at everyone all the time, even if it's a nurse who just poked his port with a big needle. It's not usually the things you would think that send him into a rage attack. It's weird.

Also, he's actually doing better in some ways. We've been practicing signing for months, and been pretty discouraged, because all he would ever sign was "more," which he already knew before he got sick and which meant anything and everything he wanted it to. Recently, however, he'll actually mimic me when I show him the sign for "please," and yesterday he used it correctly without prompting! We were overjoyed! And this was on the same day with more rage attacks than we've ever had on one day. So strange. 

He can also still walk a little bit holding on to our hands or the special push toy the OT brought. He'll only do it if we set him up and encourage him--it's not a mode of locomotion he chooses on his own. Here's a video from about a month ago to give you an idea. He's a bit shakier, now. VIDEO

We've done some swimming this summer and he really loves the water. He especially enjoys things that he can do on his own, like playing in water on a slip-n-slide when we were visiting my parents. Edward would crawl over to the giant extra plastic they put down at the foot of the slip-n-slide to make it longer. It collected big puddles and Edward would rear up on his knees, hands in the air, and then throw himself into the puddles. He loved it!

[August 2014: Slip-n-slide water fun]

This week is a big week for Edward, we have an IVIg infusion tomorrow, at which time they'll also do some tests to see whether another round of rituximab would be helpful or whether they need to try something else. Tuesday will be his first physical therapy appointment, which Henry is excited about, because he gets to go, too. Thursday is a music therapy session at a nearby elementary school for all the kids in the Early On program (through which Edward gets his speech and occupational therapy), and it happens to fall on Kameron's day off, so we'll go to that as a family. On Friday, we'll have our regular visit from Laurel, the occupational therapist. 

Thanks for all your prayers. I've been told by many of you that Edward is still on your daily prayer list, even when we go such long periods of time between updates. Thank you so much! I imagine the updates will get more frequent as we get back into more regular therapy appointments and look at possible changes in his treatment, but please know that we treasure your prayers at all times!

Here are a few more pictures. I noticed that Henry's not in many, but it's only because he's always off running somewhere and has to be caught and pinned to be photographed with the family (which also means most pictures of him are blurry)!

[Practicing balance with Laurel, OT]

[Riding the rolling gardening stool]

[Watching a horse with Henry. Don't worry--Kameron was ready to grab him as soon as I took the picture.]

[And now four Edward-and-Daddy pictures in a row--I couldn't help myself]