Posted 2014-06-08T12:39:36Z

June 8, 2014: Slow but steady wins the race

It's hard to believe all this has been going on for less than four months. It feels like much longer!

It's been a good couple of weeks for Edward. He turned 20 months old. He had a wonderful IVIg infusion on Monday (6/2), where he smiled and laughed at all the staff, ate well, and then slept through most of his treatment. He had a good visit with his speech and occupational therapists from Early On on Tuesday (6/3). And some of you sent him not one, but two of his favorite chairs! Thank you so much! We'll use them both and we are so grateful.

Edward is sitting up straighter and seems to have more dexterity. His eyes are so much better that the opsoclonus is rarely detectable. He's happier, too, which makes our quality of life so much better. Because of camp meeting, we rearranged his IVIg schedule in such a way that he had it two weeks apart instead of three. Drs. Mitchell and Pillai didn't think he needed a decadron pulse this time, since he'd had one only two weeks earlier, and it's been wonderful! He was much happier and sweeter during the week after his infusion. Also (and this may be unrelated to the decadron, but it's big news), the day after his infusion during his visit with Early On, he crawled over to the stool, pulled himself up, and took several steps with it for the first time since March 23 (ten days after his first IVIg infusion)! Then he fell down and hit the back of his head and had a good cry, but the point is it's a huge improvement for him.

At his visit with Early On, which was really just the completion of their initial evaluation of him, we found out that he is testing within the normal range for his age for cognitive development. Praise the Lord! Other tests showed that his fine motor skills are actually pretty good, although of very shaky quality--he can pick up small items with his thumb and pointer finger, etc, as long as he has enough time to work at it. His gross motor skills are about the level of 7-to-9-month-olds, but we knew that. Edward enjoyed his therapists, and it feels good to have the results of their evaluation and some specific goals to work toward.

We're about to leave for camp meeting, so I'll sign off. Thank you for your continued prayers. Here are a few pictures:

[June 2: Edward with Dr. Pillai]

[June 2: Edward with Dr. Mitchell]

Laura-nurse
[June 2: Edward with nurse Laura. I know this one's blurry, but it just shows what a little charmer he was all day Monday. A pleasant infusion day changes our whole week!]