Monday, November 14, 2011

Rule #128: You're never too young to be a cowboy

Last week my dear friend took my family to the Children's Museum for my boy's birthdays. The kids had a great time playing. I had a great time with one of my best friends. Alex...I'm sure he had fun, but mostly he was sweet and wrangled the kids so that I could chat with Eth with minimal interruptions. Love that man!

The boys favorite part of the museum was the ball station. Hands down. Eth has two boys as well, similar ages to my kids, and while Evan and Will didn't play too much together, Graham and Aiden played near each other, albeit with minimal interaction. (but that's more their ages and less that they didn't want to per se).
video
We didn't take any pictures at the water station, but that was a close second for favorite. I was surprised at how cold the water was, for some reason I had expected the constant movement in a warm room to heat it up a little. *shrug. The boys loved it anyway.

We moved over to the farm area. Graham had a great time moving the food from one bucket to the next. He probably did that for 20 minutes straight.

Evan kept talking about climbing the rock wall, but when it came down to it, he flat out refused. Silly kid. So when he started climbing up the stairs, talking about getting on the horse, I figured he'd back out of that too. It took some convincing, and an example by me..but he did it! He actually wanted to get on it "all by hisself" (Evan speak) but I wouldn't let him, he was not grasping the concept of gravity.

Then of course he directed Graham to be a cowboy too. Graham looks a little scared here, but he actually was having a good time. Promise.After a while we went upstairs. I think the upper level will be a lot of fun once my kids are a little older. There were a lot of building stations. Paper, blocks, magnets etc. My boys mostly tear things down, not a lot of building goes on in their lives just yet.

There was a wind tunnel that Evan was entranced with. Again, no pictures. Shame. You could fold paper into airplanes and they had paper cups to put inside the wind tunnel. It was like a mini, really mild tornado. :) I played with it for a while myself.

Thanks Eth for a wonderful time! I love how close we are despite hardly ever seeing each other anymore. True friendship is like that, and I'm very grateful for it!

Rule #127: Change is in the eye of the beholder.

Graham had his neurosurgery follow up on Monday. We started out with another CT scan. He did...pretty well holding still. I can envision it getting more and more difficult as he gets older, yet not old enough to explain to. We had the most success with the toy that I hate most, a wand that flashes lights and plays the most annoying music I've heard. But, it gets the job done. I can't complain too much.

Right after his CT we went to meet with his Dr. Naturally we waited a while. What to do, what to do?

Oh, I think we'll play with the x-ray board.
Still no Dr? Hmmm, we'd better play dress up.

Bono anyone?
Eventually the resident came in. (Don't worry coworkers, I met with Dr Kestle too). When I asked the resident how Graham's CT looked, compared to the first one, he said it looked good, but there wasn't much visual change. That's what I had expected. I asked to see it anyway.

Not much visual change my foot! I guess it's in the eye of the beholder, but if I can *see* the difference, without having to measure or do anything crazy, I think that's visual change. Silly resident.

We took pictures off the computer after the Dr left.

The brain on the right is from his CT in June. The brain on the left is from Monday. Keep in mind that this is the view of a single 'slice' of his head, the most dramatic slice. If you move up or down the space gets smaller.

See, you can see a difference. Now, granted, there is still a lot of fluid and the problem has not completely resolved, but it has improved. Dr Kestle has finally committed to saying Graham will need the shunt forever. His exact words were "I'd be surprised if he ever gets it out." Where was that surety six months ago?

How am I doing with the forever shunt plan you ask? Just fine. I knew, honestly, I did. I may have wanted a different plan, but I'm not surprised. Truthfully I'm better without the unknown hanging over my head. I don't do well with "maybe" or "wait and see" situations. I just don't.

The current plan is to have another CT scan in June, a year after surgery and see how things look. After that, I have no idea what the plan is. As far as how often they want to see Graham. Since he will have the shunt for the rest of his life, I can't imagine they will need/want to see him frequently. Not even every year. As long as he's acting okay maybe they'll want to see him every few years. I have no idea. I'm an ICU nurse after all, not a clinic nurse. I'm out of my element trying to predict future visits. :)

The main things to focus on are these:

~The shunt is intact and working well

~There is visible improvement in five months!

~We have a definite plan for his shunt, keeping it forever.

~Graham is healthy, happy and developing on track! ***The most important one, really.

Friday, November 11, 2011

Rule #126: Meycomb is Evan for "thing"

Big news, Big news!

Graham took his first independent steps yesterday! It was really only two-three shuffles...but I'll take it! We've been expecting this moment for a few weeks now. He's been cruising around the furniture, the walls, standing unassisted, and visibly *thinking* about how to get from A to B for a while. I was so proud of his tentative steps!

There were no real bold attempts at walking today, but it'll happen. My little baby is hardly a baby these days!

I also want to document things about my children that I don't want to forget.

***
Evan's vocabulary is quite extensive. He learns more and more every day. And yet...sometimes he comes across something he doesn't know the name of. (Or 30% of the time, he does know the name but can't remember, or is trying to be funny. I'm not sure which) He has come up with his own word for such situations.

"Meycomb."

I don't know where it came from, or what he thinks he is saying. But anything can be a 'meycomb.' A missle, a dinosaur, a book. Who knows. It's a word of all trades.

"This is a meycomb."

"I actually think it's a dart gun."

"Oh, this is a dart gun."

It cracks me up. But the best part? When he is talking to Graham, he dumbs it down for the baby. :) Instead of telling Graham something is a meycomb, he tells him it's a 'mana.' Apparently that's baby talk for meycomb? Funny kid.

***
If Graham sees us eating something, and if it looks like something special and tasty, he will come toward the food while smacking his lips, eyes focused intently on the food. Then he will stand at your legs, smacking his lips until he gets food. Or yelling at you because you clearly did NOT understand what lip smacking meant. Or at least you didn't understand fast enough. :) We now have two beggars in our house. Graham and the dog.

***
Evan wants to play with Graham all. day. long. He gets very upset when Graham has to take a nap. He always wants to close Graham's door at night before he goes to sleep. It's really sweet. I just wish he would stop pushing him, trying to pull him down the stairs and throwing things at his face in between all the sweet moments. sigh. Even with all the abuse, Graham thrives on attention from Evan. Lately they have been spending a lot of time in their train tent. (you remember, the one from Evan's birthday party) They have such fun. I love to see their friendship grow.
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***
I love my one and one time with Evan when Graham is sleeping. We play games like "go away monster" that he thinks is the funniest game. ever. He'll even play it by himself if I'm busy. He just cackles, all alone. He's such a happy boy. Truthfully, it doesn't really matter what we do together. He loves to be with just one person. It's his element, where he feels the most comfortable. I'm grateful that we are able to give him that time, where he feels loved, and important and listened to.

***
Graham has started fake laughing. Puts a smile on my face every time. He's also started using his fake laugh when he's accomplished something. I'm not sure why he thinks it's "funny" but he laughs. It sounds more like a scoff at times. Hearing my children discover their voice thrills me. What an amazing time in their life, so much development, so much learning, so much to be proud of!