Summer

Summer is here, which means all the kids are home, which means one busy mama.  We're having fun, and staying busy.  I have a resolution this summer to take more pictures...and to get the ones I do have off of the camera!  I really know I need to be better about this.  Next post, pictures I promise!

I've been taking a break of sorts from blogging, from the computer in general really.  I go through phases where I absolutely cannot read one more word about mito, I just can't think about it anymore.  I know that sounds odd, considering this is a huge part of our everyday lives, but I feel sometimes like I'm on information overload.  I think that with this disease, you are on a constant search to find out why new symptoms are happening...figuring out the best way to handle the old ones...it is such a frustrating disease.  So maybe it's my coping mechanism, I don't know, but sometimes it's easier just to pretend like everything is completely normal for us!  Pretty soon though, something happens that jerks me back into our reality...and it's ok...we're ok with our reality.

That moment for me was today.  I went to our DME to pick out a medical stroller/wheelchair for Hudson.  He's outgrowing his regular stroller, and although he is mobile, he tires very quickly and can't walk for any real amount of distance, he starts to fall everywhere.  The heat here is brutal for him and saps his energy completely.  He needs something bigger that he can grow into, and something that can recline and also can hold his oxygen and various feeding attachments.  With the heart surgery possibly approaching (and no, still haven't heard from cardio), we wanted to get the approval process started so maybe it will be here in time for him to use after the surgery to be more comfortable.  I'm pretty sure we are going to go with the Kimba Spring model, it seems to have everything he needs while at the same time not looking too "medical."  Standing in the DME flipping through those catalogs brought an end to my game of pretend ignorance pretty fast.  I know that once it's here I will probably love it, because it will make going out with Hudson a lot easier...but that doesn't mean I have to like it today.

Hudson is doing pretty well, considering how fast the heat drains him.  We are spending a lot of time indoors, or in the water.  One interesting quirk is that since his last hospital admission, when he was dehydrated from a virus, his motility has picked up!  He hasn't needed his milk of magnesia since that admission, which is great, one less med!  Of course, we now have the opposite of constipation...it's so odd how his motility can change so fast.  He is having horrible retching lately though, which makes me wonder if maybe things aren't moving quite like they should.

We are all enjoying the laid back summer days, hope you are too!