He spent most of his day in a complete full body spasm (this is the only way I can describe it). He is in the ATR (fighting reflex) position, arms and legs straight out, weird mouth shapes and this high pitched wine and his toes curled. He was so drugged today and yet nothing had any affect on him at all. It is sooo painful to see.
Ironicially my mito. dr called to check in on us (which is not a common practice), she also knew that I went to the conference and want to see if I got any info on the boys. I was pleasantly surprised that she was interested. I told her about how awful Avery has been and we are going to try a few meds that were mentioned at the conference. Although new meds for Avery is always a big deal b/c it could be great or horrible for him. I also told her that the drs. were certain they did not have PDH and she said that she has alot of other bloodwork from all of Avery's previous stay and alot of result were in. We will sit down next week and go over all the labs that came back from clinics in Atlanta and Cleveland and Baylor. She did not think anything came back abnormal but we can see what else needs to be looked at. So the great news is I will not have to send any of the boys records anywhere b/c she is actively trying to find a dx and mutation. That was really comforting. She really cares about my boys.
I call my drs. office today on my bloodwork and the nurse was supposed to call back but did not. I will have to harrass them tomorrow. I got up this morning and felt good, went to the gym and could not even complete my workout again. That is on a full night of sleep and a high protein breakfast. This is not normal for me. I made it through work fine but was so exhausted by the time I was heading home. I could not even find the energy to pick up my bottle of wine. WOW, now you know something is wrong. I guess it is a good way to get me from drinking wine. LOL.
3 comments:
I am thinking of you so much. And I am worried about you too. I am glad you are so on top of things and into your doctor instead of putting it off. You know Steve is taking every Friday off so we can camp but I have an idea for us to get together:) Hugs to Isaiah and Avery and Janessa. So good to hear you had great individual dates with each!! love, sonya
If you get a good nights sleep and are still tired like that and later on get a new burst of energy, it could be your adrenals (stress glands). Take that DSF vitamin supplement I gave you if you still have it. Praying for Avery!
ES
Hey, I'm sorry Avery was in so much pain. How awful for you all. I hope he has some better days, and the new meds are more effective.
Re: the fatigue, sis you ever get that thing when you were younger, where you'd be away at college (assuming you lived away from home when you were in college) and then you'd go home for a vacation, and get sick the day after you got home. It used to happed to me all the time, and I think it was the necessity and adrenaline that produces, when you're away, that leaves you exhausted, and then when you stop for a moment, it catches up with you, and you feel the exhaustion you've been fighting for the last however long. I'm just wondering if getting the Wish stuff, and having the boys home with less hospital visits for a while etc, may have given you enough of a break, that everything just hit you at once. I'm not saying that you're not sick, but I have a good friend who's had chronic fatigue for years (she's a lot older than us) and I think it is partly to do with never taking a break. It's not the kind of thing that you should expect one night of good sleep to resolve, but you might want to take the pressure off yourself in the ways that you can maybe let yourself not try to work out for a while, and not stress about it - do they have a sauna or steam room at the gym? maybe restrict yourself to that and massages for a couple of weeks! I know, it'll take discipline! It's so hard stop when your life involves going at full speed almost all of the time. But it's a perfect time of year to do it, weather wise at least, and I'm sure you really need it. They'll figure out if there's something going on. It'll probably be OK if it's not straight away, if you can let the need to know right now go a little. I think I'm running the risk of sounding annoying! So if this isn't helpful, just ignore it! It's just a thought. I know I have trouble stopping sometimes. Mostly,actually!
Maybe thing i terms of pampering yourself for a couple of weeks maybe, rather than for an evening here and there (I know, there will still be tonnes to do, but maybe a half hour, or an hour every night for a couple of week. Rick can donate some of his lie-ins, now that he's all trim and muscle bound!
Looking forward to seeing you guys sometime.
Alison.
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