Monday, December 12, 2011

Updates...

Every year I say I won't do this to myself. I will be more organized. I will save and I will budget. I'm a freaking FPU graduate thank you. (GoodSearch it if you don't know what that is) But I didn't. Here I am 2 weeks before Christmas still scrambling. But I can pat myself on my back for not touching one credit card. NOT ONE! Christmas is much thinner this year, but my debt is also. This is so not where I planned on going with this post. I saw on my google dashboard that my last post of Nov 23rd. That was a long time ago in my blog world. Darn. But I am proud of my last post so at least it didn't sit in limbo on some dumb post about irritable bowels or something.
So let's play catch up... we ordered a sleep safe bed for Lily and put our boxing gloves on ready to fight, but they said we'd prefer you go with the easy care bed (which is pretty darn close to the sleep safe) and they'd approve that. What? Insurance improved our request on first attempt? Awesome news. Especially since the other night on prompting from strange lights on the infrared camera in Lily's dark room I found her face down in a pillow having a bad seizure. I immediately rolled her back and she gasped a large breath of air. I don't even want to talk about it. I didn't like that experience, I never want to have it again and I think God might have pulled some strings to get us this far safer bed sooner rather than later.
Lily had Ortho clinic last week checking her scoliosis and the AZ Cardinals were there! It was awesome! We're big Card fans, always have been, always will be! I had all three kids with me due to not being able to get Andi to school and Lily to the appointment on time, so what an awesome surprise. At one moment we had 3 cardinals, 2cheerleaders and the cardinal mascot in our room. Oh and a photographer. It was awesome! They were so sweet to Lily and thought Oliver was the cutest. Andi and Oli couldn't believe the Cardinal kissed my hand and Andi said she was going to tell her dad. On the way home Andi said "Mom the bird expressed his feelings towards you when he kissed your hand" oh she is some kid. Dr was kind as always, seemed a bit jealous of his stature compared to the football players, but got right to business. Scoli still there, and bracing may not be too far in the future. Surgery as well. One thing that caught me off guard was he asked her age twice then asked if I knew what stage she was in her disease, if she's plateaued. I told him we aren't aware of stages in her disorder, she isn't typical rett. I told him she never regressed because she never progressed. She's pretty much always been in a plateau. I was concerned with why he asked and he never followed up on that. My thoughts were he sees her getting older and sees her scoli.. and I don't know. People complain about getting older but they shouldn't. Be thankful for your years you are given. The more the luckier you are. I think when you have kids with severe special needs children the concerns get more as the kids get older. It sucks. That's all I have to say about that.
Thursday the 15th I am taking Lily to keto clinic and we are going to put her on modified atkins in an attempt to help the seizures. I am praying this helps because I know according to Neuro last step will be completing the corpus callosotomy. Her seizures are just so uncontrollable right now, even on 4 meds.
Lily started back up in hippo therapy (horse) but last time we went she had a seizure 5 minutes into it and that was it. We are gonna try again tomorrow. Weather willing. It's raining here. And a lot. So odd. So ridiculous in my opinion. TOM's are not good rain shoes.
Wow. Intended to come on and post about Christmas and my thoughts and yadayada but I guess sometimes when I let my brain take control there is nothing my hands can do but go along with it.
I've been going back and forth about setting my old blog up the one about nothing. There are things I'd like to say on here, but I feel like my feelings on motherhood and especially Lily need to be here, but certain other things that I feel the need to get out shouldn't be done here. I'll let you all know if I do so. That would require more time from me so probably not gonna happen. But maybe.
Do blogs without pretty pictures and crafts even still exist???

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