Wednesday, June 12, 2013

No News is Good News

Hard to believe I've been MIA for a month now... We've just been busy!All is well, which is a good thing. Quick update, mostly for my records, and two quick stories. Will is overall doing good.

Physical: PT is going well. We're working on taking a step and then throwing a ball, same thing for kicking. That takes a lot of coordination, but he's getting every 2 out of 10 tries really well. He loves anything to do with sports and balls so he is at least enjoying himself.

Occupational therapy: This has been so rewarding for me to watch. He's darn near a master with the scissors. He cut a wavy line on a large thing piece of paper this week with NO help at all. He moved his hand so well up the paper to keep it steady and he cut on the line. His palm and finger strength is improving. Ms. Joann, our OT, has a wooden hot air balloon with holes around the top. He is able to "sew" a shoelace through the holes, going up and down all by himself too. This is not easy work for him, but he is so focused on getting it.

Speech: God bless our speech therapist, Ms. Cassie. She has the patience of a saint. There are moments when I have to space out during speech. Will has conquered "F" - fence, fair and his favorite, fart. I try to discourage that one. We've almost conquered "Ch" - chin, chair, children. "S" is proving to be the most difficult and we're going to add on "L" soon while continuing to work on "S" - we were talking about his ability to get certain letter sounds and that his real problem is fatigue. His mouth muscles are developing but it's not without a lot of work.

He has started a random stutter. He did this a few months ago, so I'm not nearly as worried. I don't think it's speech related, just some sort of weird growth "tick" he has. He also is driving us both nuts with putting his fingers in his mouth and picking his lip. I mean NUTS. I think I say "Fingers" every two minutes.

The subQ IVG continues to go well. He has stayed healthy which I am so thankful for. It's getting "tiresome" to do these infusions every week and sit still for almost two hours, but luckily he usually seems to be okay with it.

The Houston, Texas, heat and humidity is here. If anyone has suggestions for things to do inside places around Houston let me know. I can't stay inside the house the whole summer with him, but we're also not going to go to the Zoo! I also have germ problems with places such as the Children's Museum and indoor bounce places. I have a proven theory that when kids are home sick, but not sick enough to sleep that parents take them to the Children's Museum. I have actually had parents tell me they do that. So, not happening here. Not even subQ IVG will get me on that one.

One activity we did this past weekend was a fun trip to Academy. Who knew you could spend nearly two hours going up and down every aisle. We'll have to hit up Gander Mountain or Bass Pro Shops next. Of course, we had to wear "cowboy gear" - that consists of any pair of shorts with belt loops, a collard shirt and a belt with his shirt tucked in.

This one was for Neil, who is a Longhorn and has brainwashed Will into loving the horns too.


Sword fighting, ahem, I mean fishing

Relaxing. I couldn't get my camera out quick enough. He had laid down and put his arms up under his head.
Random story...
Apparently, Will hates stuffed animals. His PT, Ms. Lauri, gave him a stuffed koala bear for his birthday. He pulled the tissue paper out of the bag, looked inside and started to freak. We had to put the bag and animal out on the front porch in order to continue with therapy.
We went to the mall one weekend so I could find a dress for a wedding. Neil took Will to look at build-a-bear while I zoomed through a store. Will again, shrieked and freaked at the stuffed animals. One caught him by surprise and that put him off balance and he almost fell into many things and people, luckily Neil caught him.
So, when in doubt, NEVER bring stuff animals over to play with Will. He might kick you and the animal out.
I am going to the UMDF 2013 Conference this week. I'm looking forward to connecting with many online mito friends in person and learning about the latest and greatest in mito-land... a land that's always changing. I'll probably do a long post about whatever I learn when I get back - long boring ones :-)


  1. My comment didn't post, darn it. :) What I said was so glad to hear Will is healthy and I agree on Bass Pro Shop. In the heat of the summer or chill of the winter, we go there to let the kids sit on four wheelers and look at the fish, followed by a walk to Rainforest Cafe, not to eat, but look at the animatronic crocodile and elephant and we end it with a vanilla malt from Marble Slab and sometimes a train ride. :) XO

  2. Glad to hear Will is doing so well with his therapies, looks like fun at could give bowling a try...we recently took Abby for the first time and she did like it, they have bumpers so there are no gutter balls and little ramp things that they can roll the ball down to make it easier for them. I guess you would probably want to wipe the ball down with anti-bac but it could be fun? Hope you all have a good summer, maybe we'll see you in San Antonio again soon! :)

  3. Glad he's doing well! K has a verbal tic, too. She says, "Nuh-nuh." all the time and it gets worse when she is excited. She has been doing it for YEARS now.

  4. Oh my. Will has grown into a handsome young man. I am so glad he is doing so wrll. I really miss having him in my class. And can't wait to see more pictures and hear more awesome stories. I love you Will!

    --Mrs. Kristy