Sunshine

I feel badly that I posted a mopey post and then did not come back and blog for over a month. No worries, things are a-okay. It ended up being a good reminder for me about what happens to my head when I don't look after myself: after a week of the flu, not eating well, not working out, I could feel those ugly thoughts creeping up. That's about the only time they happen now.

Anyway, a few days after that I was back to normal and we haven't looked back. Everything and nothing have happened since then. I had my birthday, Rachel had her birthday. We had the longest, coldest, snowiest winter in decades. King had an MRI today to check everything over and see if his scoliosis is related to a tethered cord and if something needs to be done there. We've been doing more school planning, which has been great. Basically, we are all just doing really well. 

Who can be grouchy in the springtime sunshine?? 

Stable Like a Table

A midst the craziness of the first day of school yesterday for Rachel and Cordelia (grade 2 and SK), Kingsley had his follow up appointment with his neurosurgeon. The MRI showed nothing of interest! Everything was stable - his ventricles, his (potentially tethered but asymptomatic) cord, his (also asymptomatic) Chiari Malformation, and his syrinx which is all the same size, no bigger, no smaller and not causing any drama.

[exhale]

Such. A. Relief.



The girls had great first days of school. They both love their teachers and were excited to see their friends. No tears!

except Kingsley. he cried. smiling for pictures is pure torture before 9am.

MRI Number...?

I think today was Kingsley's eighth MRI, but I could be wrong. I've honestly lost track. They're just checking things out, for once. We don't have any obvious concerns, but neuro wanted a follow-up after last years virus, and to check the syrinx, the possible retethered cord, space for the Chiari, etc.

This was the first time I've talked to him about it before hand. The Pre-Admit Clinic gave us a print out of pictures to talk to kids about and give them a visual description of what would be happening. Last night, we chatted about it and I showed him the pictures. He started crying. He said he didn't want the mask, didn't want to go to sleep, didn't want to go to the hospital. I was able to talk him down a bit and let him know that I'd be there and I'd be with him when he went to sleep.

This morning, I opened his door and his first words were: "Be-tuz I don't want to have a nap and I'm scared of the mask!!" Oh, buddy. :(

He did amazing though, truly. He was scared. He cried when the nurse put his bracelets on and kept asking for chocolate pudding. We spent most of the morning snuggling and reading books. When it was time to go in, I carried him and he told me how scared he was again. I laid him down on the gurney and the anesthesiologist was so wonderful, talking to him and trying to keep him calm. When they put the mask on, I reminded him that this was just sleeping medicine and it was going to be okay. He just nodded, held my hand, breathed slowly, and drifted off to sleep.

Crush my heart. Three year-olds should not have to be this brave.

He woke up in a great mood, making the nurses just fall in love with him. We watched Curious George and shared a popsicle until he was allowed to go. While we were there, one of the nurses showed me his hospital file. It was about three inches deep. This kid is going to need his own shelf by the time he turns ten.

We get the results in one week.

The Back Bone's Connected to the...

We got in to see ortho! I was sent an email this morning about a last minute opening this afternoon. Craziness, but we made it happen.

I really like our ortho. She's new, but seems to really know what she's doing. SB isn't the most popular diagnosis these days, so I sometimes get the impression that some of King's specialists or people are kind of dusting off cobwebs to remember SB details when we talk. I don't get that with her, she asks the right stuff and looks at the right things.

Anyway, she was not concerned with his back. She said a degree or two a year is to be expected and he looks alright to her. She and I talked over tethered cord, what I'm seeing, why she's not concerned about that. Lots of relief. She sent him for x-rays afterward (which he did not like) to see how much he's changed/if he's changed. She also recommended that his wheelchair get adjusted since the kid is growing and this is likely impacting his stability, which is totally true. We also talked a bit about long term scoliosis, what it involves, what it would look like if there were actual problems, what those problems would mean. Nothing I need to worry my little head with now.

She also checked out his feet while he was there and asked about his ballerina foot and whether it was getting worse. She thinks that he will likely need a lengthening in the back of his ankle at some point, to keep his foot at 90 in shoes. Right now, his AFO's are doing the job.

So, phew! She's going to call us if there's something on the x-ray we need to know about, but otherwise, let's get on with the move!! :)

When it Rains...

Isn't it funny how you can have months and months of nothing go by and then all of a sudden you find yourself faced with multiple things all at once? No! It's not funny! It's horribly stressful and it's making me grouchy.

First, exciting stressor: we are moving. In two weeks. Or maybe three. Not entirely an exciting stressor since it's hard to move really quickly when you don't know when you're moving. We need to act fast because my knee surgery is coming closer and closer and we need to be settled before that happens. However, I like things like this and it could be just fine if that's all that was going on.

But. Of course it's not the only thing.

Kinglsey has mild scoliosis, which is kind of normal for people with SB. He was assessed last year and it was only about 13 degrees. I don't actually know what that means, but it was no big deal.

He's always leaned to the left, mostly just when he was tired. He has one side stronger than the other, but a slight curving of his wheelchair seat and giving him something to hold in his hands is usually enough to get him upright.

Nope, this isn't the case anymore. Lately, he's leaning a lot. His elbow is always on the wheel getting filthy, he slouches when he's eating, and the lopsidedness in his back ribs is obvious to me more than it's ever been.

This could be his scoliosis getting worse. This could be Cordelia's super late bedtime tantrums making him really tired. This could be his cord retethered, since it has come on pretty quickly. I don't know. But the calls are starting, the appointments will follow. It's starting to pour.

A Bump in the Night

I don't live in a state of constant worry. I thought I would, especially when handed the list titled: Signs of Shunt Malfunction. Fortunately, Kingsley doesn't give me a whole lot to worry about. There was his first autumn that caused me a huge amount of anxiety, obviously. Then there was this past autumn where I lost sleep a few nights. Then there have been a smattering of why is he crying?? moments where the the big bad shunt monster crossed my mind. But otherwise, no worry.

Last night, I didn't sleep. It was one of those nights where I did worry.
Kingsley wasn't sleeping. Again.
He's been off, not himself, grouchy, whiny, tired, miserable. My happy little boy is anything but happy.
Last night, as I rocked him in his room, the evil thoughts started creeping in...

Shunt. Cord. Chiari.

Surgery.

Oh, the dread that can creep into your mind at two in the morning.

Kingsley eventually went to sleep, after a dose of Advil and a long hour of rocking. In the morning, he was grouchy again, but I was able to run through all of the tests I could think of to make sure he still had all of the same movement and functioning in his legs that he had a month ago.
I mentally went through the Chiari warnings while we went about our morning and didn't find any that raised red flags.
I went through the all-too-familiar shunt watch list in my head and didn't check enough to warrant concern.

Then I stuck my finger in his mouth and rubbed his gums while he practically purred.

Teething.

Exhale.

OK.

It's so much easier to think clearly when the sun is out, isn't it?