May 11, 2014: Happy Mother's Day!

[Thurs, May 8: Early On staff evaluate Edward in the comfort of the living room]

It's been over two weeks since our last update, and so many things have happened. Kameron's parents came when his sister left and they've been working hard helping us get our "new" 1976 camper ready for camp meeting. We've gotten a lot done, but in the process I've pushed off this update over and over. I tried to sit down and write it Friday evening and accidentally fell asleep three times before I finally gave up!

I'm thrilled to report that Edward has made major improvements since I last wrote! Most of these wonderful things have happened very quickly within the last week. He can now sit up rather well, though still leans his body and head forward more than normal and bobbles around. He has gone from reluctantly army crawling only when absolutely necessary (and crying all the way) to happily taking several crawling steps with only a few hops (both legs forward at once) and an occasional army crawl. He can pull himself up by holding onto the couch or ottoman. He'll allow us to put him down on the floor to play. He takes interest in toys and household objects. He interacts in a happier way with everyone around him, rather than barely making eye contact and cowering against whoever is holding him, which is what he was doing a few weeks ago. He's happy to sit in his highchair--a huge change from when every attempt to put him there turned into a horrible screaming fit the likes of which I described last time I wrote. He's eating more and with greater dexterity. He is starting to sign, again! Today he signed "more" when he heard me say the word before I had even signed it. He's also vocalizing, again. We haven't heard his little voice very much lately, except for hums and grunts and cries, and it's such a treasure to hear even the smallest amount of babbling.

If you haven't seen Edward, these victories seem so small, but they are truly monumental when compared with how far he had regressed. To give you a bit of perspective, some friends of ours with an 8-month-old came by a few days ago, and we marveled at how the 8-month-old has such better motor skills, vocalization, and muscle tone than Edward, who is 19 months old.

On Thursday (5/8/14) we had our initial visit from Early On. An occupational therapist, speech therapist, and school psychologist evaluated Edward in a relaxed, comfortable way sitting on our living room floor with him and asking us questions as they watched him. He took to them very quickly, smiling and cooperating with their play-like tests. Kameron and I were encouraged to see that he could do more than we thought he could, and we've noticed even more improvements since then. Although they didn't have time to finish their evaluation, it is already clear that Edward qualifies for their services. They'll be calling us to set up regular weekly home visits of one hour each from the speech therapist and occupational therapist. Edward will qualify for this program until he turns three, at which point we would need to explore other avenues for therapy, though of course we hope and pray he'll be completely back to normal before then.

Edward's 4th and final rituximab infusion was on Thursday, May 1. At that time both Dr. Mitchell and Dr. Pillai stopped by to see him, although Edward didn't have an official appointment with them. Dr. Pillai hadn't seen him in a while and was shocked at how much worse he had gotten. Dr. Mitchell had seen Edward more recently and knew that this apparently worse state was actually an improvement. Though I don't often look forward to going to the hospital, I'm excited to show the doctors how much better Edward is getting.

His next appointment is a week from tomorrow (5/19/14). He will have an IVIg infusion and a visit with both doctors. It will be a regular check up, and will serve as his pre-MIBG/CT scan office visit. Two days later, Wednesday (5/20), we will go back to the hospital to have the radioactive stuff infused through his port, then we'll go in Thursday morning for his fused MIBG/CT scan to make sure the cancer is under control.

Because rituximab can take a while to work, Dr. Mitchell says we will wait for 2-3 months to see how Edward does before trying any further OMS treatments. Of course, because rituximab impairs his immune system, he will continue to receive IVIg infusions every three weeks, which will give him passive immunity. Each IVIg infusion will be accompanied by a five-day pulse of the steroid decadron (dexamethasone).

Other than that, it looks like we'll have a relatively normal summer. Praise the Lord! Thank you so much for your continued prayers. We so appreciate your notes of encouragement and the food and care packages you've been sending. You are wonderfully generous and supportive. Thank you!

[Sabbath, May 10: Laughing on the way to church]