Thursday, December 12, 2013

Duck and Cover

I am so overwhelmed by SB right now that the last thing I feel like doing after the children go to bed is writing about it or thinking about it in any capacity. I feel stuck in a constant state of loathing for SB and all of the baggage that comes with it. But for the sake of documenting this little chaotic phase of my life, here is what we're dealing with. 

The Ugly: Yeah, that stuff. We're onto the next phase. I kind of thought, 'hey, we'll start this next procedure and it will work (or not) and that will be it.' Nope. It takes a lot of trial and error and tweaking and adding, subtracting, adjusting. Ugh. I'm so over it. More than anything, I wish I wasn't flying solo on this. I wish there was some professional here who knew about these things and could support and advise us. The first couple of weeks I felt quite desperate and flailing, like walking around blindfolded. Fortunately, my SB peeps have pulled through and I've tapped into the underground world of Moms Like Me who are willing to talk about the unmentionable stuff. Thank God

Speech: King is in speech therapy again. He flips his she/he, her/him all the time. At first it was awkwardly funny when he'd call a man 'she' or a woman 'he', but now it's downright frustrating. We're also working on F and the elusive K sounds. 

Food: I just finished an OT feeding group where I spent two hours a week trying to figure out how to get Kingsley to eat. I swear, my life revolves around getting things in one end and out the other. He hasn't gained weight in the last year, has barely grown. I need him to eat more and eat something other than cheese. It would be nice if he would voluntarily eat it as well. You know that saying 'kids won't starve themselves'? It's not true. For real, that's part of what I learnt. Kingsley falls into the small percentage of children who just doesn't want to eat a lot of the time. There's a long history about why, but I'm so tired of thinking about it. Long story short, he is making some gains here. I think I've managed to boost his caloric intake and he is getting more brave about trying new foods, and food in general. Yay!

Fine Motor: Kinger is also doing his own OT group, this one for fine motor school-related things like colouring and cutting. It's aptly named 'Cut and Colour'. He's doing great with it. For some reason, he is incredibly interested in doing both when in a small group. Not remotely interested at home. Ah well. Maybe that means he'll do it at school next year. 

Sports: This hasn't happened yet, but I've enrolled him in an amazing program called Making Waves. Starting in January he will have 1:1 swimming lesson, which is awesome. We've also borrowed the same sledge we had two years ago and I'm pumped to get him out on the ice... when our days are a little less booked. 

Surgery Recovery: He is doing great, now that his casts are off. His incisions have all healed ridiculously quickly and his legs are still good. I am super paranoid about them tightening up again though. Twice a day, I give him a leg massage and go through a bunch of deep stretches, then two more times a day I just do the stretches. It's time consuming and sometimes, the last thing I feel like doing. He also wears his leg splints to bed, which he's not complaining about. He's also had a bazillion appointments related to his legs. OK, maybe not that many, it just feels like it. He has new AFO's now, which required new boots and check ups. 

Other Stuff: Then there's all of the monsters lurking under the bed, the things I notice and wish I wasn't noticing. I feel like his back is wrong. I'm not sure how to explain it or what is going on exactly, but he's not straight. I don't know how to fix/prevent it. I'm not sure I want to think about it very much, but obviously I can't bury my head forever. He's also been coughing/choking a lot lately, which is where my brain goes crazy and tells me that he'll need a decompression RIGHT AWAY. That is the stuff of nightmares. Of course, it could be the dry air giving him a tickle or a cold or something simple like that. Oh, I just want it all to go away. 

And between all of this SB overload, we have Christmas. I adore Christmas and love extending the Holiday Joy as much as possible. I am trying very hard to not let SB trump that joy. 

Laura did our photos again ;)


  1. "I feel stuck in a constant state of loathing for SB..." My thoughts on a daily basis. Thankful to know I'm not alone!

  2. Oh Jill, I hear you! What a lot of craziness all at once. I think it would be wonderful if JUST ONCE our SB kids could be dealing with just one issue at a time instead of 15. Mason has his own going on and it stinks. I haven't even blogged about some of the things because then I start feeling whiny - and who wants to hear about trying to get a child to poop when he's got this big open incision half an inch from where it all comes out and enemas are really messy. And food! I hope it is just his age, but Mason has gone from eating a lot of things happily to cutting out entire food groups and large portions of the ones that are left. He's not gained weight in over a year and now he may actually be losing...ugh. It goes on and on. Hang in there Momma and keep us updated when you can. Praying it all smooths out and by January it's a new year and easier one!

  3. Sometimes SB gets kinda quiet and know it's there but you relax a bit because it's not stirring up trouble (or not much trouble at least). And then BOOM! SB jumps out from under the bed screaming like a howler monkey and just throws poop all over you! Am I right! I'm sorry SB has your plate so full. I love the pictures, they are adorable. Cute kids, for real.

  4. Hang in there...If he is like my little 3 yr old grandson with S.B. his sweetness and love far outweighs his problems!!! He will be fine.

  5. Great photos as always! :) In the first photo Kingsley looks so big and grown up like! I hope the stress of things settles down for you soon. I find I have times where it seems worse than others. Might I suggest that if you're wondering about his back, ask at one of his leg appointments? The ortho should be able to tell you her thoughts. There have been times that E's weight has settled out for a while too...then eventually he does increase. Try to take it easy and enjoy the season (the rest will of course still be there, but it helps if we get a time out too)!


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