What's New

This picture has nothing to do with this post. It's just a funny picture of Wiz. He's wearing the batter's helmet backwards, because it looks like a knight's helmet.

As you may know, Wiz suffers from migraines. We finally made it to see the neurologist. The most likely diagnosis is classical migraines, so we are supposed to keep doing what we are doing. We'll probably add a couple of supplements (the neuro wants me to run them by the hem first though) and keep track of his migraines. If they are worse, we'll pull out some of the big guns.

The neurologist is a thorough guy, and doesn't appear to like to drive, so he is letting us get the MRI (why the diagnosis is still most likely and not set) down here if the hospital can do one with sedation. He's happy with phone consults, so he also decided to have a baseline EKG run, so if we need to have the big guns, he'll know which ones to avoid. This is where things have gotten interesting.

Yesterday, we got the results from the EKG back. There is some sort of abnormality (don't know what) so we now will be heading to the cardiologist for a consult and probably more testing. It's unlikely to be anything too bad, since this kid one of the more poked and prodded of the 8 year olds, but it does need to be checked out.

It's going to be an interesting fall.

Seattle III

Yes, we went to Seattle again. Full immuno work up (6 vials of blood, poor kid), but we did something fun this time.

A college friend of the Collar's and mine lives in Seattle, and we met him for dinner. We had sushi. The Wiz loves sushi, and this place is great. They have a list of gluten-free sushi and even keep bottles of the tamari sauce so I even got to have wasabi and sauce. It was lovely. Catching up with an old friend is good too. It had been 16 years since I'd seen him. We're going to try and get together next time, too.

After The Wiz's appointment (we arrived at the hospital at 8:00 and finished around 10:45) we went to the Seattle Aquarium. It is the first time we were able to do something fun in conjunction with a hospital day. I think he had fun.

Vacation from SCIG

We just finished the last infusion until October(ish).

I'm happy, The Wiz is sort of ambivalent. He says he's glad for no more needles for awhile, but that it does help. (Why can a 7 year old tell? This just breaks my heart.)

Poor Wiz.

Last night, I heard whimpering from the Wiz's room. I went in, and he's covered head to toe in big, red itchy hives. We've got pictures, but those are for the various doctors he now must see.

These were worse than last week's. I took him to see the ped, and he says allergy, but not to IG, because the reaction was over 48 hours, and that should have happened between 12 and 24. However, he "almost" has bronchitis, so he's back on antibiotics. (He will develop bronchitis--he always does. This is one of the reasons his GI really thought he had CF.) Game Boy was supposed to see the allergist on Thursday, but doesn't need to, so I have to call and ask them to see The Wiz instead of Game Boy, and cancel The Wiz's appointment the following week or so. We'll see what the allergist says.

Ugh.

He's now had bronchitis twice this fall/winter. It's only January. He's now missed 6 days of school, too.

Edited: His lymphs are low. Maybe next week we'll run a CBC since he has his well child check up then.

It couldn't last

The Wiz's stretch of good health, that is.

Since he started having SCIG infusions last fall, the Wiz has been remarkably healthy. He didn't have his usual bronchial infections or anything else.

The record stopped today. Last night, he started coughing, and coughing, and still hasn't quit. He has bronchitis AND croup (how do you get both?!) so no trick-or-treating for him tonight. He probably won't be able to go to our All Hallow's Eve service and party tomorrow, either.

The trick or treating tonight is a rant in itself. Some of the churches around here asked for Halloween to be moved from Wednesday because it's a church night. These same churches are having trunk or treat at their church parking lots TOMORROW night because a.) Halloween is evil!, b.) dressing up and walking to your neighbors house is evil!, c.) and begging for candy on Halloween is evil! However, apparently, dressing up, going to your church parking lot and getting candy without the exercise, is not evil! Whodathunk? And it is so very different from Halloween, too!

He is very cheerful, though. I bought him cupcakes, so he's not too unhappy about any of this. I'm not thrilled, but at least it's him and not Game Boy. That would be a disaster.

Hmm, he shrunk?

When I knit Game Boy a sweater, I worry that he'll out grow it before I finish.

When I knit The Collar a sweater, I worry that we'll both hate the color by the time we finish.

When I knit The Wiz a sweater, I worry that he'll shrink?
Um, he shrunk. How did he do that?
I'm knitting him this sweater, using the size 2-4 chest circumference and the size 6 length. I meant it to be a little bit long. However, I didn't mean for it to be big enough for him and a friend. All the pieces measure spot on. Maybe it'll be better once the hood has been knitted.

He shrunk. That's my story and I'm sticking to it! It's still a pretty nice looking sweater.

*********
Medical Stuff: The Wiz's BMB reports are back. His marrow has improved since last year in almost every way, so we're good for another year. Hooray! We all think it's due the the SCIG. I'm glad it did something, besides drive us crazy once a week.

And, we're back!

We had an eventful couple of days. We went to the Renaissance festival on Sunday (I'll write about that tomorrow). Today was the Wiz's annual BMB/BMA. A day he loves but that I do not.

It was a long, long day. We arrived at 9:30 am and left around 5:00 pm. There were a few glitches. He did very well, and only complained about being hungry about 50 million times. He ate his pizza and carrots, played with the Playstation, watched Teenage Mutant Ninja Turtles, and had blood drawn. He doesn't remember falling asleep, but does remember walking into the room.

We are starting SCIG again as soon as we (the hospital, home health care company, and me) get everything together. It looks like next year we'll be starting in September and going through April. Oh well. (The Wiz told me he wants to be back on IG--he feels better when he is on it.)
His blood was like it always is. Low in some places, high in others.

I finished a good chunk of The Wiz's sleeves. Maybe it will be done by the end of the week!

I'm not freaking out

The title says it all.

On Monday, The Wiz is having his annual bone marrow biopsy and apiration. This is his 4th one. In some ways, I am appalled that he has already had 4 of these, but in others, I am so very thankful that it has only been 4. (I am also amazed and appalled at how many times he's been under general anesthesia--9 times, so far. He's 6.)

Usually at this point I am a wreck. I always schedule these things for my Fall Break, so that I don't have to try and find a sub for class. I spend the week before it happens on edge. But I am not this year. I'm not too worried about it, even though his last blood counts were off.

He, on the other hand, likes BMB/BMA day. Why? Well, he gets to have popsicles for breakfast. He gets to play with the toys at Hem/Onc all day. The nurses all love him (they are great with all of the kids) and let him have lots of stickers. His description of the biopsy is this:

"I have a blood draw. THOSE hurt. Then they let me take a nice long nap. When I wake up, I have a big bandage on my back and they let me order whatever kind of food I want! I get suckers and stickers and it's fun."

Yes, my kid thinks that bone marrow biopsies are fun.

Anyway, the boys and I are heading up to No. KY this afternoon after Game Boy's game. Tomorrow we will spend at the Renaissance Festival in Oxford, OH. Monday, the Wiz and I will be spending at Children's, while Game Boy gets some spoiling. Game Boy thinks of the Wiz's medical appointments as a treat, since the Wiz tells him how much fun he has. The Wiz is a serious optimist. He really does forget a lot of the bad things that happen. I am grateful that he does so well.

I'll see you all later. Have a great weekend!