Monday, March 21, 2011

Supermoon, Housekeeping & Gut Instinct

Photo by

What an amazing sight!!  I wish I could take credit for the photo above, but I am not in possession of a camera capable to capturing it so well, so I am happy to rely on others for preserving the memory.

It WAS a beautiful moon to see and we enjoyed talking about it.  Did you know there are lunar time zones?

We enjoyed it even more because we were with friends for the evening.  Yes, Madison and I ventured out of these four walls for a little while Saturday night.  It was one of the few times in the past week with Miss M, she is just feeling THAT bad right now. More on that in a bit though.

We were invited to come and help celebrate a friends new US citizenship (he’s a Canadian), and jumped at the chance to spend some more time with this couple, as well as several other co-worker’s my dearest husband has that we LOVE.  Good food, a little wine (for me), and lots of entertaining conversation is so very invigorating.  The kids were the only young people there, and as always, thoroughly entertained all the grown ups….even if they did share stories and songs I thought were for our ears only…LOL.  Oh what people must think sometimes after a few hours with this crew!!  LOL  It was a lovely evening and Madison did “okay” with the exertion.  Emotionally, she and I both needed to get out, so in that way, it was the perfect evening.  Sitting on the back porch, enjoying the weather….laughing as the dog jumped in the pool or had the ball thrown over, and over, and over….laughing and loving on our friends….AND a supermoon!!??  Awesomeness.

Just a couple of things before I move on…..

PLEASE join us or donate to our teams for the Race for Wishes and St. Baldrick’s at the links at the top right over there.  We only have 5 more days and need some help!!

Note at the upper left that Blogger now has an option where you can enter your email and receive notifications as well as the latest blog post in your email box!!  Go ahead, go for it, I know you want to<grin>.

{Gut Instinct}
I really have a love-hate relationship with my gut instinct.

When it comes to Madison, it’s just far too right most of the time, and it’s never what I want it to be.  I successfully ignore it far too frequently…..or wish just once it would be all wrong.

At the moment, my gut is screaming at me.  Continuing to ignore it doesn’t seem possible, and I suspect I will be calling our pediatrician tomorrow morning to see about getting Madison checked over.  We are one month out since the mono diagnosis and she is just getting worse!!  She hasn’t felt up to aquatic therapy two weeks in a row, has not felt up to going out and spending a couple of days at my mom’s, and really just has not moved much at all.  I insisted we get some school work done last week and while she had been struggling to get more than an hour in before, after about 20 minutes last week she was in an autonomic crises…flushing, overheated, nauseated with increased blood pressure, heart rate and respirations!!  And it hit fast and hard and took her at least 15 minutes to settle back down again.  Not good.  And as telling as anything else, she is being cuddly, wanting to snuggle regularly….while I LOVE me some snuggle time with my girl, this is SO NOT Madi anymore and I know it’s because she is just feeling so cruddy.  She actually managed the outing Saturday night better than I expected, no doubt in part because Brandy was letting her snuggle with her, but as we started working towards getting out the door she hit her wall and needed to leave right then.

My suspicion is that she might be anemic……far too much bleeding the last week or so between an insanely heavy cycle, 2 GI bleeds, and she’s bruising at her injection site again.  This might actually be the easy, best answer, but we won’t know till we get some labs done and see. 

It’s times like these that I worry the most about her heart having something to do with what’s going on.  It’s just so incredibly complicated to have a child with cardiomyopathy AND mito……the overlap in symptoms is just too insane to even begin to know what to look for.  The thing is, there is just no way to know….and I hate that….and it scares me.

I am just going to keep thinking anemia and try to get some help figuring it out.  She is worrying me though….and I hate my gut instinct at times like this.  And am, at the same time, grateful it’s so good when it comes to Madison.  UGH!!!

Grateful for a good one with Madison, in large part because it sucks so badly when it comes to Abigail.  I just cannot get a bead on that girl, and am regularly surprised when I learn she has been dealing with something for a while that she has failed to mention and that I have failed to pick up on.  It all eventually comes to a head though and I learn more than I ever wanted to know.

This last week, it came to a head.  Abby’s tummy is just barely working and it turns out she has been having headaches regularly, something she conveniently failed to mention to me.  She is an ignorer that girl…..and it’s enough to make this mom a little crazy.  I always understand her so much better when the real story finally comes out, but boy does she hate to give the medical stuff even a moment of her attention.  I am SO with her, but know it has to happen.  I just wish I could read her better.

We have a busy week this week….at least compared to the last couple.  All three see their motility GI tomorrow, Chance has an appointment with the pain clinic Wednesday, and I suspect I’ll be getting Madison in to see the pediatrician sometime this week too.  Please pray she can tolerate what we have on the agenda, and that we come away from these appointments with useful information.  Thanks as always!!!!


  1. Oh i hope you are right about the anemia thing! so sorry that addison is struggling. I hope the upcoming appointments are productive for you guys.

  2. I love our pediatrician, but boy do I hate it when KayTar has to go in! We always come away with a new illness later that week. I hope your appointments shed some light on what is going on!

    KayTar sometimes neglects to tell me important info, because it is "normal" to her and she doesn't think it is a couple of months ago, she casually mentioned that the words in the book she was reading were flashing red and green at her, like it was totally normal. She said it had been happening for a long time on and off. It would have freaked me out if it happened to me, but to her it was just the same old, same old.


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