Tuesday, April 12, 2016

our little weekend (from a month ago now)

(I wrote most of this about a month ago but never finished it.  Time to post it!)

This weekend, we decided to go run a few errands together as a family, and I decided to stalk them with my camera while we did so.  We haven't gone out a whole lot during flu season, due to obvious reasons!  Emma needs a more functional immune system.  Flu levels are lowering and seem to be close to post-flu-season levels, so we ventured out.  We're hoping to get to do that more often this summer.  

We decided to fuel our children with some In and Out hamburgers and fries, which they loved:

Then we headed to Home Depot to look at some of their stone options for some landscaping/garden stuff we're hoping to do.  See the look of concentration on Tyler's face?  And the ring of children around him?  And notice where his wife is hiding?  (I blame it on the need to take photos, but I'm really legit hiding.  Okay, not really...)

This was the part where Ella was informing me that those red brick things were actually headstones for a graveyard.  You can tell by the look on her face that she knew this was a serious topic.  (Just cause I like to say silly things sometimes, I'm totally serious about this that she was saying that.  I think Rhys said it first and Ella walked up confirming it.)

I guess he got tired?  I don't really know.  I was too far away and national-geographically-stalking them to know what was going on. In my British male narrator voice, "And the boy randomly sits down with an amused expression on his face while his sister stands behind with hands on her hips." We don't typically sit on the floor when we go shopping, so that didn't last very long...

Emma wears her mask any time we are in public enclosed areas.  This is also the look she looks at people with when they get too close for comfort for her.  I look forward to the day that she doesn't have to care at all.  But I do hope she continues looking at people that way.

The kids wandered around and looked at all the different plants and flowers.  

They really liked it.  And who knew the lighting would be so great in here for photos?

Then we went and flew a kit at a local nature park.  It was way too windy so it didn't last long, and I didn't get any good pics of it.

Some pretty flowers:

The kids played "soccer" for a while:

And enjoyed the lovely day...

Minus the tornadoes, I love this time of year.  It's just so pleasant and beautiful.  There's green all around us and it's fun to get out and play more.  <3



Tuesday, February 9, 2016

IVIG

For those that don't already know, I'm doing a photo-a-day of things I'm grateful for and am posting them on Instagram for any that want to follow over there (I share to my personal FB too, if you're a friend on there):

https://www.instagram.com/ourlittletasteofheaven/

January was a pretty good month.  Minus being victims of identify theft, having a tire blow/shred while going 70 mph down the highway with all kids in the van (it was rather uneventful, thankfully!), and then our health insurance changed.  That was the most stressful.  Everything went from being fully covered to 50% covered.  We tried looking into a children's hospital we could transfer to for full coverage (or anything pediatric), but they didn't have ANYTHING.  Long story short, everything - except current home health company - is now fully covered.

We love our nurse, so while we wait to see if we can continue with her, we had to go to the hospital for Emma's IVIG infusion, which we did yesterday.

As you can see, she's very, very excited:


There are some benefits in having to go to the hospital for it, they have OtterPops:


This is what it looks like when they have everything hooked up to her port.  IT'S PURPLE!  Much more colorful than what she's been getting at home:


She's been having diarrhea for the past three weeks, which isn't good.  They ordered a GI panel to have things tested.  Part of that was to collect her poo for testing, which I did...only to discover there was no more diarrhea.  I collected it anyway, just in case they still wanted it.  Then found out they didn't need it if it looked normal.  So, I pretty much used a sterile tongue depressor to collect poo from a clean toilet hat to put into a tiny container...for no reason at all.

Could have done without that little adventure.

And, hopefully it really is cleared up and won't come back.  :)

Saturday, January 2, 2016

yay...it's 2016!

Goodbye 2015.  

You were mostly a good year.  Not necessarily spectacular, but you were good. 

That's assuming we overlook that Emma lost all her hair again, broke out in body rashes (GVHD or crazy eczema?), still has two viruses that have 'woken up' floating around her system annoying us, and that her immune system still is on vacation...other than that it was good.  We had a lot of fun times together as a family that we'll treasure.

2015 was much better than 2014, when it comes to the emotions.  But it was still hard.  Hard to do normal, easy things.  But, that finally seems to be passing (I hope...as there seems to be different degrees of it and it keeps lessening), and it's perfect timing for a whole new year to start. To feel like we can start fresh and new and hopefully have a healthy Emma by the end of it.  But, if not, that's okay too.  We're just super happy she's here.

So, HAPPY NEW YEAR!  

This was a super spontaneous photo taken this evening.  Our last family pic of 2015!  I hollered at the kids to come in as-is, and we took several shots.  Too bad Rhysie is not very visible!

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01-366
One of my resolutions this year is to actually make some resolutions.  I'm pretty sure I almost never do that.  But, one of the ones I wanted to do was a "gratitude 365", er...366, which is to take a photo a day of something I'm grateful for.  

I thought I'd start with this fellow here:
He put up shelves up in the kids' room today.  And, while he was doing it, I was thinking how lucky I am to get to have my best friend as my husband and how proud & thankful of him I am for all he does for our family.  Without him, I wouldn't have the family I have.  <3