There are weeks that are full of new things and fun and miracles and light and beauty and the good things.
And I guess you could probably gather that every week, and every day for that matter, has the same positive elements somewhere if you look hard enough.
Let's just say that this week I'm having to look really, really, hard.
Translated, this means I've had a craptastic week.
On Monday Christian was officially through the first week of his diet. The mixing and measuring isn't that difficult, to tell you the truth. Every time I get the slightest bit irritated by my confusion over numbers and percentages I think about the parents who have to weigh actual food out and try to ratio carbohydrate to proteins to fats through actual food. And those who have to physically deny their able bodied children cookies, candy, and the sweetest things in life...oh, now that's painful. So for this particular diet, I have to say I'm thankful for Christian being fed through his g-tube. It's pretty easy. Guess I didn't have to look too hard for that one, eh.
The first week was emotionally very difficult. Christian did what was expected, sleep. But I felt like I saw more jerks. At first I thought it was because I'm supposed to be tracking exactly how many jerks he's having a day so we can measure progress. It's gotten to be so much I'm ready to write "A LOT" over the whole week and chuck the damn thing.
I wasn't aware at all that seizures could possibly increase. So thank God for the internet. I was able to jump on and find a couple Keto diet forums, message boards, and a list serve much like my near drown list serve.
Why is it that talking to other parents in the same situation feels like unlocking a secret society? I always feel this odd mixture of clarity, understanding, and anger that doctors and professionals don't share the information upfront. But mostly I just feel hope.
Anyway, those parents gave me some great ideas of which include lowering the ratio, reducing the seizure medication he is on and just holding out. Many parents shared that it took a lot of tweaking and a lot of patience to wait for the diet to finally work. And this can take months. They explained the body has to adjust to the new make up of energy and it could take some time. Mostly, I just need to have a little more patience.
Stupid patience. Why do you always have to be so necessary?!
What else could be making things a little difficult? Well, Christian is hurt.
This is the same hurt he got last year. It was the first crunch I heard in his leg, same leg, same area around the knee. But there was nothing on the x-ray for that area of the leg.
Fast forward to Europeds, same knee area on the right side gets tweaked. X-rays show nothing, Christian is better in a few days.
Fast forward to two weeks ago, Christian was in a kneeling position on the ball, face down, and unexpectedly rolled and twisted to his side during PT. This tweaked his right knee again and he cried and cried and was better in a few days.
Fast forward to last Saturday. I was sitting with Christian on the couch. I lift up his foot to look at it, not even applying any force, and he buckles his knee and I hear the infamous crunch. Oh, it's ugly. He cried crocodile tears. I was on my way out the door to urgent care when I put him in his chair and he stopped crying. So I decided to wait and get an appointment for that week with our ortho doctor.
His leg is still pretty sore but he can tolerate some stretching. I took him to the ortho doctor this morning and x-rays show something strange going on. Definitely not normal but not definite either. It's not a clean crack or break. The x-ray shows fluid around the knee area signaling trauma of some sort. There is a circular cloudiness above his knee. He said it's either some kind of break, infection, or a tumor. The tumor being highly unlikely. Infection not as likely either because Christian hasn't has any kind of fever or signs of an infection.
The plan of action is to go back in two weeks to see what develops and if we can find out more about what's going on through another set of x-rays. If we still can't really see what's up, we'll do an MRI. Fun stuff.
It's hard because I just can't help but think there is more I could be doing for him to avoid this. But what? I'm a little tired of guessing. So I need prayers that the answers will come.
And just to top this super positive blog entry off, I'm sick. I have my yearly cold. I get one once a year and it's made it's appearance today. It's been totally awesome. :-\
As I'm finishing up this entry I'm realizing that, actually, I didn't have to look too far to find the positive. Thank you, Blogger.
- Support forums and message board are awesome, life and sanity saving, even.
- I'm so glad Christian is g-tube fed after choosing to partake in the Keto diet. It makes life just a little easier.
- I love our Ortho doctor. He isn't pushy. He isn't knife happy. He communicates and I wish he was our doctor for everything.
- My husband made dinner so I could sleep off some of this nastiness.
- I finally wrote Christian's name in gold glitter on his stocking he has had for the last two Christmas's so everyone would know it was his. Boy, I'm glad there is a little boy around with a funky leg that belongs to that stocking.
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