August Highlights

It's been SO hot, our lush grass is looking kinda dry 😕

It's still more fun to play on than before though!

Always eager to help if dessert is involved:

Pretty much everyone complains that Eli hogs Tyler- it's pretty cute how much Eli adores his baby brother though!

Still working on eating solids:

Hailee and Jace got these huge helium filled balloons and released them from our back deck:

Hailee's 4th grade teacher had a garage sale and Hailee wanted to go- the kids got all sorts of junk treasures, Hailee mostly got costumes- Jace particularly loves this:

We've been having lots of fun playing games together recently, we just miss Bryson most evenings- it's not the same without him when he's at work!

Look who's almost sitting up by himself!

Obviously the strict exercise regimen his brothers have had him on is paying off 😉

So Fierce

Hailee loves her costumes.  A few weeks ago, she asked Nathan to cut a piece of wood so she could use it as a sword, oh, sorry, she wanted a claymore. So Nathan, loving a project, worked with her and they made a pretty cool looking sword- a little paint and tape for the grip and it was complete- she loves it.

Hailee then made a cardboard sheath for it.  She loves to show me how fierce she is with in her different poses-

And here is her "Bad-Posture Dargen" character:

There's also Comfy Dargen, Swimming Dargen, Stupid Dargen, Fat Dargen and Scary Dargen, just to name a few... Dargen's alter-ego's are endless.

She's been going to counseling to try to help her process emotions and such.  She loves it- her counselor is super fun and really relates to Hailee.  In one of her appointments, she made this picture to show how strong and fierce she is:

So naturally Hailee had to reenact the pose:

And then she wanted to make another one at home!

(this was her attempt at not looking so 'mean')

Jace the Knight

I love the imagination and creativity of little kids.  Jace was aghast to discover perfectly good cardboard and cereal boxes in the recycling bin and went to work!

He had to make sure I took a picture with his serious face:

And the helmet:

When he was finished with that, he, Dallin and Eli all worked to make a pretty cool little car track:

If only the creativity extended to cleaning up the mess *sigh*

I mustache you a question:

Hailee had a counseling appointment in town, so she had to hang out at Nathan's office with me afterwards because I had a telehealth appointment for Tyler... she wandered in at some point like this:

Oh this girl!  I had no idea where she'd found the mustache, but I was NOT expecting it!  But besides that, she came into town wearing a {too small} winter jacket (in the middle of summer!) and a cape 😅

And then, a few days later, I saw this scrolling on the screen in Nathan's waiting room:

So apparently, she gets it from Nathan!

Camping

Bryson took some time off work (he works SO much, but still loves his job!) and we went camping up at Fort Spokane- it was super HOT, but so much fun with my parents and the Whalens.

Bryson and Dallin commandeered Hailee and Jace's swords claymore's: 

Playing with cousin Natalie:

Boating, kayaking, fishing; we had lots of fun!

Napping on the beach...

I tried my best to create shade and keep him covered, but poor Tyler ended up a little bit sunburned in the end 😕

5 Months Old

I mean, how am I supposed to just choose one??  He's such a happy little guy!

My sister Kim gave me a video monitor for Tyler- I honestly didn't even know at first if I wanted it, but I have to say, I love it!  It's so convenient to check and see if he's sleeping without the possibility of waking him up.  Plus, he's so sweet to just watch.

He loves being outside (though you can't tell it from this picture!)

I'm sure it was Eli who did this:

Jace one day was a big helper and put his diaper on him without me even asking!  When I checked it after a little bit, it was low riding just slightly...

Good thing he didn't poop!

At five months, he weighed 13lbs, 10 oz, a gain of 1lb, 5oz from last month!

1 Wrong Base Pair

We got Tyler's genetics back!  So interesting.  By way of review, X-ALD is caused by errors on the ABCD1 gene on the x chromosome, these errors can be deletions, additions, translocations or substitutions of any length.  Of the more than twenty thousand base pairs in the ABCD1 gene, Tyler has exactly one base pair that is coded wrong- just one.  At one specific point on the DNA "ladder," instead of a 'A,' he has a 'G.'  And because of that, he lacks a protein that basically enables very long chain fatty acids to be broken down.  He is also the first documented case with this specific mutation.  Obviously with 20,000+++ places on the gene where there can be an error, that's not to difficult to do, as they've really only recently started to study this disease genetically.

So now that we know exactly where his DNA is incorrect, it makes testing Eli, Hailee and I much easier as they know what specific point on our DNA to look at to see if it is coded correctly.  We've basically been waiting for these results so that we can be tested, my parents included.

Sheesh, it really makes me realize how amazing it is that, for the most part, everything does go right during human development... well, at least as far as we know!! 😑

The more and more I've learned about X-ALD in the past few months, the less afraid I am of it.  While it's not always the case, so often knowledge is power.  For sure though, since there were no treatments available when Eli was born, ignorance was bliss back then!

Paradise

It just doesn't get better than this...

A quiet evening on our hammock watching the sunset... Nathan actually commented, "I can't believe we get to live here, it's so beautiful!"

Even Jace was impressed by the sunset and had to take a picture:

Overheard

With the Covid-19 pandemic and having church at home, Bryson usually ends up using only 1/4 of a slice of bread for the 7 of us to partake of the Sacrament.  Dallin thought he had a better idea on Fast Sunday though...

Dallin: Bryson... it's Fast Sunday, break the bread into bigger pieces!  Use the whole slice!