The Rest of May

After being closed for 2 months, Nathan was finally about to go back to work a few weeks ago.  The Governor had shut down dental offices for 'non-emergent' work the week after Tyler was born, so most days, Nathan would go into his office for a few hours and see 1 or 2 patients-  certainly not enough to cover overhead though.  He and Dr. Rich also got a lot of maintenance done on the building that has either just been put off, or needed to be done when the office wasn't open. 

Unlike with the schools being closed, there had been no update (or extension) on when dental offices could reopen, so unless we heard otherwise, Tuesday May 19 was the day to resume business.  But then, on Friday the 15th at 4pm, the Governors office announced that dental offices could open (early) on Monday the 18th at noon, instead of the next morning at 8am.  How magnanimous... micromanage much?  Because I'm sure that at 11:59am, the risk of Covid would be too high?  And as if any dental offices even had staff working at 4pm on that Friday to try to schedule patients for the following Monday at noon.  Ugh.  Whatever.  Regardless, we were just so glad Nathan got to go back to work!

Jace scraped his leg up pretty bad on his bike one day...

My first aid box was a little worse for the wear, but he fixed it up himself!

"May the Fourth" be with you...

on May 4th (Star Wars Day) Aunt Sandy made up a bunch of Star Wars pancakes for us- the kids though they were awesome.

Natalie happened to be at Nathan's office one day that we were there so she got in on a little cousin snuggle time:

We took a super quick trip down to Tri-Cities to see Scott and Dayna- the boys did a little motorcycle riding in their back yard...

Just thought this was a funny perch:

Tyler still getting lots of exercise and stimulation!

Mimi and Papa had us over for dinner one night:

We regularly find Jace here when we're at Mimi's:

Just because he's too cute not to post:

He's really getting smiley 💗

I think I've mentioned before how rarely we've gone anywhere because of Covid, and if I did go out, until Nathan went back to work a few weeks ago, I could leave Tyler home with Daddy.  I'm really getting worried with how much Tyler hates his car seat- I've never had a baby who dislikes being in his car seat so much as this boy!  Anytime we go anywhere, he pretty much cries the whole time until we get him out of his seat 😕.  When we drove to Tri-Cities, we strategically timed our drive so that Tyler would be napping.

He thought that me sitting in the back seat with him one day was about the best thing ever though!

 

Our TWENTY year anniversary!

We found one of the only restaurants that offered indoor seating (in defiance of the Governor's mandate!) and tried to enjoy dinner out to celebrate...

In one of his rare fits of temper, Tyler was not having it!  He was so fussy!  We just laughed about it, just how everyone imagines spending their 20th anniversary, right??

Hailee randomly had this rash on her chest and behind her ears one day... we never figured out what it was from!

Ear check up with a silly boy:

She loves her costumes!

For Memorial day, we defied the Governors order to not celebrate with those outside of our household - we're so over the quarantine- it was originally supposed to be 2 weeks- but we're going on 2 ½ months now 😑  So we got together at Kim's house and enjoyed dinner together, I've missed family gatherings!  Karlie and Natalie were so excited to love on Tyler!

Two cuties!

Sixteen Candles

This handsome boy is 16!  

Nathan and I made the switch to iPhones.  Ugh.  The only reason being, that I've always heard how great the parental controls are on iPhones, and if my kids have them, I need to know how they work... so I made the sacrifice for my kids to switch...  We didn't even tell the kids we had new phones- we wanted to see how long it would take them to notice- it took like maybe 2 minutes.  Eli noticed first, and then all the kids swarmed.  I digress.  For his 16th birthday, and because he'd proven that we could trust him and that he was mature enough, we got him a new phone.  But as if I could just wrap it and give it to him!  I had to apply some disguise and intrigue!  So I wrapped it in gold wrapping paper and then wrapped a Hershey's wrapper around it... a little bigger than a chocolate bar, but close...

and then I wrapped that in a box with another real candy bar and wrapped that box in a box, and repeated x's about 5.

So the excitement grew and grew until he got to the candy bars... the 'Hershey's bar' stumped him for  precisely .02 seconds before he realized that it wasn't a chocolate bar at all...

He was pretty surprised...  and honestly, a little disappointed because he really likes Androids!  It'll totally be an adjustment, but I'm sure we'll all figure it.

Jace was so excited to be able to light the candles...

Can I just say how great of a big brother Bryson is?  He loves his siblings and is such a good example for them!

With all the free time we've got going on, he decided to try a new way to tie his tie (for home church):

all dressed up and nowhere to go 😔  But, hopefully by the time Church starts back up, he'll be able to tie it without having to follow the directions (and in less than 45 minutes!)

I know I already said it, but Bryson is such a great example to his siblings. He genuinely wants to be good. He is so respectful and agreeable, and hardly ever pushes the boundaries. I credit him with much of the excitement for learning that is prevalent in our house- from the earliest of ages, when he learned something new, he was eager to share it with all of us. His passion for knowledge is infectious! While he likes to 'know everything', he's working on being more teachable, being ok with not being 'instantly good' at things and just being ok with being wrong sometimes... (he gets that from me) 😕. Bryson loves all things Marvel- I'm pretty sure he thinks they couldn't even make a bad Marvel movie 😅. He and Nathan have been watching all the Marvel movies together recently, they love it. So thankful for this amazing kid, I love him to pieces!

Bryson at 16-
Favorite color: Silver
Favorite restaurant: Waddell's (a great burger place)
Favorite food: Hawaiian Pizza
Favorite drink: 7Up/Sprite
Favorite thing to do: "Mess around, or, I like to daydream"
Best friend: "Ugh, like 4 or 5 people..." {choose one} "Ok, Eli Mounts"
Favorite movie: Avengers Endgame
Favorite TV show: The Mandalorian
Favorite toy: My 3D Printer
Favorite animal: Myself
Favorite book: The Rangers Apprentice Series
What he wants to be when he grows up: An Aerospace Engineer

Eagle Project

Dallin had planned on making 'survival kits' for families who get admitted to the pediatric heme/onc unit where he gets his blood transfusions, but after doing a bunch of leg work in trying to get donations, he didn't get a lot of response.  It was pretty discouraging.  BUT!  Part of learning to be a leader (which is the whole point of doing an Eagle project), is adapting and adjusting!

As I mentioned before, we helped a Scout in Dallin's Troop with his Eagle project a few weeks ago, and it got us thinking about the 'opportunities' that the pandemic has created for service.  So Dallin changed his project to organize a 'mask drive'- collecting cloth masks benefitting both the Spokane County Sheriffs Department and the Pediatric Hematology/Oncology Unit at Sacred Heart.  His goal was to donate 100 masks to each organization, 200 total.

He emailed friends and family and church members to help out and got commitments from enough people that he was well on his way to meeting his goal!  But it wouldn't be right for him to ask everyone else to make masks and then he miss out on the experience of mask making, right?!?  And if he's learning to sew, why not all the kids?

Dallin says he has discovered his passion for sewing 😂

In the end, he doubled his goal, donating over 200 masks each to the Sheriff's Dept and the Heme/Onc Unit.  Mimi alone sewed almost 100 masks- she's so amazing 💗. 

Yay!  Next stop, Board of Review!

Outside Projects

At least we've had great weather during Nathan's Covid-induced paternity leave *wink* so we can get projects done outside.  After 5 ½ years in this house (really?!?), we're so close to finally getting grass!  Sprinklers were put in last fall, but Nathan hadn't installed the pump to the reservoir tank until a few weeks ago, so they'd never been tested... to his relief, they worked:

Nevermind that it was only 59°!

Rocks, rocks, rocks.  And more rocks.  We assign the little kids turns watching Tyler so I can be outside driving the tractor while Nathan and the big boys shovel the rock.  So much rock.

When it's not his turn to watch Tyler, Jace like to help me drive the tractor:

So so so much rock.  But, for the record, I am SO thankful we have the tractor.  I'll just go ahead and say it, Nathan was right 😑

But it looks so great!  The 2" basalt that we're putting in is nearly impossible to shovel.  There's just no way we could spread this much without the tractor.  I've lost count of how many dump trucks full of rock we've gotten, but I know it's been more than 4.

And now that the rock is done, we have a ton (actually many tons) of dirt to spread in the backyard...

We have spent an unbelievable amount of money on dirt and rocks *sigh*

Our playhouse definitely needed a new coat of stain and the kids were excited to help (at least at first...)

It's Me

On our way down to Tri-Cities, I got the phone call from Dr. Wagner about X-ALD lab results for the rest of the kids.  Eli has it too.  Which means that Tyler isn't a spontaneous mutation (like I'd hoped) and that I'm a carrier.  It means that both my parents need to be tested (to see if I'M the spontaneous mutation, as well as Hailee, because the blood test the kids had drawn (very long chain fatty acids), isn't as reliable of an indicator for girls.  It's very reliable for boys because they only have one X chromosome- if their X chromosome is affected, they can't break down very long chain fatty acids.  Because girls have 2 X chromosomes, sometimes their unaffected X chromosome functions so well, that they don't have elevated very long chain fatty acids- it's not always the case, but it means we can't rule out her having X-ALD without doing genetics.

When we told Eli that he also has X-ALD, he said he thinks it's why he and Tyler have such a special bond 💗.  He was pretty bummed that it also ruled him out as being a stem cell donor for Tyler.  But I recently read a study where they are now harvesting a persons own stem cells, infecting the stem cells with a virus that fixes the error(s) in the gene, and then transplanting these fixed stem cells back to the patient.  While it doesn't fix all of the DNA in the person's body, it is achieving the same results of halting disease progression without the negative side effects of graft vs. host disease.  So amazing!

Again, the tender mercies of the Lord abound.  Remember that when Eli was born, there was no testing for X-ALD on the state newborn screen like there is today?  So when Eli was 4 years old, and had his horrible seizures, we also didn't know then, and for that, I am thankful.  Because early symptoms of the cerebral form are often so subtle, they go unnoticed, especially in young children.  Often times, the first obvious symptom is seizures, which are soon followed by death.  If I had known back when Eli had his seizures that he also had X-ALD, I would have thought that for sure this was it, that I was losing my little boy.  It was a traumatic enough of an experience, I'm thankful I did not have to deal with that also.

His diagnosis means that he needs to have a MRI of his brain every year.  I left it up to him if he thought he needed to be sedated or not, and he was very confident that he could do it awake- he informed me that he sleeps inside his sleeping bag when he goes camping all the time, confined spaces don't bother him.  So one week after diagnosis, he had his first MRI:

Isn't he cute 😍

He did SO great!  My dad just had an MRI that ended up having to be rescheduled because when they put him in the tube, he couldn't handle the confined space, so I was very proud of Eli for doing it!

Dr. Eastman, our neurologist, reviewed the results with us the very next day.  Overall she was unconcerned with the findings.  The reading radiologist (who was given nothing but the indication for study: X-ALD- which he probably had to google) noted a few spots that seemed suspicious, but Dr. Eastman felt like he was over diagnosing a variation of normal- a good number of people have exactly the same benign findings, but since the radiologist was looking for anything that could be X-ALD, he pointed to those spots.  For sure we'll monitor those spots with his follow up MRI's, but it just didn't look like the start of demyelinization to our neurologist.  Then I remembered his MRI from when he was four years old after he'd had his seizures- she had to do a little searching, but she found the images and the 'spots' looked exactly the same when he was four as they do now.  While his seizures were a horrible experience to go through, in a way, I'm thankful for the early baseline MRI they gave us all this time later.  Tender mercy.

I've talked to Eli about what his diagnosis means and what it doesn't mean.  It means we have to monitor some things to make sure he stays healthy.  It also means that he will pass it down to all of his daughters.  It doesn't mean that people should feel sorry for him or that anything has gone wrong.  I asked him on the way up to his MRI what he thought about having X-ALD, he shrugged his shoulders and said, "Not much, I mean, I've had it my whole life and it's never been a problem, so..."  I love that outlook and am very thankful he's not scared about it.

So where do we go from here?  Since boys with X-ALD generally develop adrenal insufficiency at some point, we have to monitor their adrenal function on a regular basis.  So in addition to them having brain MRI's and seeing a neurologist, they also have to see an endocrinologist, which we've done already.  We have our appointment with bio-chemical genetics next week, but I'm not exactly sure what that appointment will entail, so... 

The things they say...

Scene: We're driving around collecting masks for Dallin's Eagle project, and he has thank you cards (in envelopes) that he's giving to those who made masks for his project...

Dallin: {frustrated}These envelopes don't even stick!

Me: Well, did you peel off the piece to expose the sticky part?

Dallin: Oh... no, I didn't.

Me: Did you know that they were peel and stick envelopes?

Dallin: No.

Me: Did you try to lick it?

Dallin: Um... yes.

😂

2 Months Old!

Time flies when you have a newborn!  Even when you're in quarantine😆  And I'm not the only one!  The kids also can't believe how big he's gotten and that he's already 2 months old.  My family for sure agrees that he looks a little bit like me!

Eli is trying to teach him parlor tricks... like he'll be able to jerk his head and catch his paci in his mouth??

A little brother bonding over screens?

Getting so strong!

Lot's of love💗

Jace had fun with the filters on my phone one day when we were at Daddy's office:

So big!

At his 2 month appointment, he weighed 9lbs, 11oz, a little over another pound in a month!  He sure is becoming more and more aware of the world around him as he has longer awake periods during the day.  He's pretty consistently sleeping 7-8 hours at night, which is wonderful.  He is held or played with almost constantly by his siblings, I've often thought that it's a good thing that I'm nursing him, or I'd never get him at all!