Posted 2014-11-08T07:03:41Z

November 7, 2014: Praise the Lord for rituximab!

Edward on a walk [Happy Edward in the Fall]

I'm sorry for the long delay in posting, but I'm glad to be able to give you a good report.

Edward received infusions of rituximab on September 15, 24, 30, and October 6. Rituximab, you'll remember, is a drug that destroys B cells, which are where the antibodies attacking Edward's brain are believed to be made. A month after his last rituximab infusion, Edward is doing so much better! This response to the drug was much more dramatic than the first round that he had in the Spring.

In the five weeks since I last wrote, Edward has learned to drink from a sippy cup, as well as through a straw! He's even happier and more independent; last post's exciting story about him sitting on the floor and playing by himself has now become just a normal everyday occurrence. His motor skills are improving, his shakiness is decreasing, he's cruising around furniture with greater ease and fewer falls, and he's walking a lot better holding our hands or with his gait trainer. He has now mastered three signs (please, more, and all done), which he sometimes uses without prompting. He started saying "mamamamama" about two weeks ago, and then just within the last few days, he has transitioned to saying "Mama" on purpose and directed at me, which we haven't heard him do since July! He doesn't have any other words, but he's starting to make different babbling sounds and will often talk to himself while he's playing. Just today during his infusion, we had another breakthrough. I was giving him lunch, and asked whether he wanted more dried mangoes, and he looked straight at me and slowly and deliberately shook his head, "no"!!! I have been longing for him to have a clear way of indicating yes and no, and all of a sudden it has appeared! I tested him a few more times to make sure it wasn't a fluke, and he complied each time. I even experimented with a few "yes" questions, and he very carefully, exaggeratedly, and s-l-o-w-l-y stuck his head out and nodded it up toward the ceiling and back down to his chest before looking back up at me and grinning. I almost cried!

Edward with gait trainer [Edward walking with the gait trainer he's borrowing from Early On]

Edward's speech therapist introduced us to some augmentative communication tools, which we've started using. The most successful is the PODD book, which is book of pictures that he can point to to tell us what he wants. We haven't made huge progress with that yet, but he seems to like it and we try to use it when we're talking to him so that he starts to understand its purpose. He's a little impatient and usually doesn't want to go through the bother of using the book, but he has shown that he can if he's highly motivated. I'm hoping to take a class to learn better ways of teaching him to use the PODD book. Of course, we're hoping and expecting that he will someday be able to speak, but these kinds of tools are incredibly helpful in the meantime.

Using the PODD book with Laurel [You can see the PODD book in the lower part of the picture. Laurel, OT was using it while she worked with Edward on motor skills.]

On October 19, we took a day trip to a children's museum in Ann Arbor, MI (about 2.5 hours away) where we met up with three other families of children with OMS. It was so wonderful to see how well those children are doing, especially the two who are older than Edward (the little guy who is a bit younger than Edward is at a similar stage of development and progress)! The 8-year-old girl and the 3.5-year-old boy were running around playing and talking and showed no signs of shakiness, tremors, or opsoclonus (chaotic eye movement). Kameron and I were very encouraged by seeing these children and getting to know their parents.

OMS families at children's museum [Moms with their OMS kids. The little one with the star over his face is soon to be adopted, but his parents can't allow his picture to be posted publicly until everything is final.]

Then, at Edward's last IVIg infusion Dr. Mitchell introduced me to a sweet 6-year-old girl with OMS who was getting her IVIg at the same time as Edward. She spoke very well and was poised and smart, answering questions quickly and easily. Her progress was wonderful to see! I know that not every story is as happy as these, but the Lord certainly brought us into contact with the right people to show us what we can hope for in Edward's future.

You may remember way, way back in early March, when I mentioned that Horner's syndrome was a possibility after Edward's first surgery. We were very happy that he never showed any signs of Horner's after the surgery, but I'm glad we knew what to look for because several weeks ago we began noticing some strange symptoms that look very much like Horner's. Sometimes, if he's in the bath long enough and the water is warm enough, half of his face will turn red while the other half stays white. It is the weirdest-looking thing! During those times, and at other apparently random times, we have noticed that his right eye will dilate much wider than his left. We haven't noticed much eye-lid drooping, but Edward's eyes are pretty squinty, anyway, so it would be hard to tell. Horner's can be acquired through neck injury, such as the surgery Edward had eight months ago (which would have exhibited immediately), or it can be caused by neuroblastoma. Because Edward had a clean scan so recently, Dr. Mitchell is not overly worried about the transient Horner's symptoms, but she does want us to monitor them closely.

Red and white face [The bathroom lighting doesn't lend itself to great pictures, but hopefully you can see the red and white halves of Edward's face and chest.]

Pupils of different dilations
[Here's a close-up showing the skin color differences, but especially Edward's pupils dilated differently.]

That's all for now. There are no upcoming changes in treatment. We'll just keep having IVIg infusions, steroid pulses, and all the therapies and see how much improvement we can get out of this most recent round of rituximab.

Thank you so much for all your prayers and messages of support. They mean so much to us!

Here are a few recent pictures:

Bubble wall - Edward [The boys love the bubble wall at Helen DeVos Children's Hospital--it changes colors constantly, and bubbles float up from the bottom in unexpected bursts. I think they would watch it as long as I would let them!]

Bubble wall - Henry and Edward [Look at it, now!]

Henry at Edward's PT [Henry likes to come to PT with Edward, and he's usually very quiet and helpful. You can see him sitting still in the background as Edward practices climbing onto something.]

[Edward really enjoyed walking up the ramp and dropping things into the bucket.]

We're hugging! ["Mama, take a picture of us; we're hugging," said Henry.]

Kameron and boys [In a waiting room together]

Augmentative communication team [Henry loves to be part of Edward's therapies. This was a day when we had our regular speech therapist, Chris, as well as a team of augmentative communication experts evaluating which methods might work best for Edward.]

Sitting alone for children's story [Two weeks ago, Edward sat by himself for the entire children's story! It was the first time he'd done that since he got sick.]