Confirmed

We found out that for sure Tyler has X-ALD.  And I'm ok.  Sure, I'd rather he not have it, it certainly adds complications to his (and my) life, but life isn't easy, and it's not very often that you get to know one of your child's trials before it {potentially} appears.  I just feel so thankful to know now.

So what next?  We add yet another specialist to our list.  I've never even heard of a biochemical geneticist, but it's a thing, different from clinical genetics.  The closest one is at Seattle Children's Hospital.  And, {bless Covid} because of the pandemic {and the disturbing civil unrest happening in Seattle right now!}, they're allowing us to be seen virtually so we don't have to drive the 5 hours each way, and stay in a hotel with a 6 week old baby.  Yay!

The thing about X-ALD is that it's genetic.  "X-linked" means it's on the X chromosome, the ABCD1 gene to be precise.  While Tyler could be a spontaneous mutation (like Dallin is with his spherocytosis), he also could have inherited it from me.  But only me.  I really wanted to blame this one on Nathan *wink*, but since the ABCD1 gene is on the X chromosome, and a father gives {only} his Y chromosomes to his sons, IF Tyler inherited this, it's from me.  So since Tyler's X chromosomes are all coded wrong, he'll pass it to ALL of his daughters, but NONE of his sons.  My kids would say, "that's physics!" *wink*

And because he may have inherited it from me, my other kids could have it also. They didn't test for this when my other kids were born, so we don't know. Which meant we had to get their blood drawn also:

Social distancing! 😐

The good news is that the overwhelming majority of cases of the really scary cerebral form of X-ALD occur between the ages of 3 and 10, and most of my boys are out of that range.  But regardless, I'd rather know so we can be proactive.

And if he inherited it from me, am I a spontaneous mutation?  Or did I inherit it from one of my parents?  Where did it start?  Really, I think it's likely that it starts with Tyler- there's just never been anyone who has had symptoms of X-ALD in my family, and it's a pretty big family!  It sure would make things a lot more simple if no one else is affected...

Random April (starring Tyler)

We just can't get enough of Baby Tyler-

He's just so stinking snuggly!

Jace brought him to 'class' for show-and-tell:

So often he sleeps with his hands above his head:

I know I posted about his love for Mam paci's already, but boy, I love them too!  Maybe because they're bulbous at the end they stay in his mouth easier and thus he sleeps better.  I don't know if it's that, or the snug little basinet that is by my bed that he feels so secure in, but regardless, he's such a good little sleeper!

I got this little outfit solely with Bryson in mind 💗

I think I'll save it for his babies some day (since it's really not that far off 😲)

Tyler gets held almost all the time.  I really try make sure that he has a few naps in his bed every day, hopefully he'll transition to not being held all the time when the kids go back to school 😏

More than one argument has arisen because one kid thinks that another kid is 'hogging' Tyler (generally Eli is the culprit), Bryson wanted to hold Tyler the other night, but Eli wouldn't give him up, so Bryson took matters into his own hands and held them both:

And everyone loves napping with him:

Ya, I know, we shouldn't be sleeping with him...

Look at those little cheeks:

The kids love the next few shirts:

(Eli subtitled that one, it's to be read in a husky, deep voice)

He still gets lots of tummy time and other exercises:

Have you ever seen a better frowny face??

Sadly, because of the quarantine, Mimi and Papa have kinda kept their distance- none of us were sure whose preference it was... so then, we were like, Whatever!  Come visit!  We're all pretty much over Covid...  

I love this picture:

I actually think, that there's a little bit of me in him!  While he for sure looks like a Cotton baby, there's also a little bit of a different look that resembles my baby pictures... maybe?!?  

Random April

I started adding pictures to this post and it got impossibly long when I included Tyler, so he's going to get his own 'Random April' post 😂

Lots of new and interesting things have been 'trending' with quarantine... one of them being sourdough baking.  Nathan's sister Sarah got a sourdough starter from a friend and told me how amazing the bread she's been making with it is... So I figured I may as well try it...

The loaf I made looked delicious:

I'm just not much of a sourdough fan.  Plus, I don't need one more thing to have to feed and try to keep alive right now (ie: the sourdough starter...)

We have ALL been enjoying a lot of wonderfully warm and sunny days this April- that is certainly not always the case for Spokane in the Spring... I'm so thankful for the nice weather this year because with all of us home, it's nice to be able banish the kids outside to burn off some energy!

They got the trampoline set up a few weeks ago:

It's so convenient that they're big enough to be able to get stuff like that done without my help and/or supervision!  We're *hoping* to get the rocks done and grass put in this year *fingers*crossed*

I looked outside one day and saw Jace riding a scooter, Eli riding Jace's bike and Dallin riding an office chair...

He was seriously scooting around on the chair playing some kind of game with them 😅

Hailee, Jace and Eli wanted me to play Scrabble with them... we got off to an ominous start...

In the end (after we started over), we decided that we'd make it legal to use online Scrabble dictionary's.  The game was actually playable after that!

One morning while feeding Tyler, a procession of turkeys happened by outside his window:

(there's a ledge cut into the hillside about 12 feet up)

I think Jace may only volunteer to help make desserts so he can lick the spoon after...

Hailee and I decided to straighten out her hair one morning, why not?  We've got plenty of time on our hands!

Doesn't she look so different?  So funny how it totally changes her face.  She's a beautiful girl, inside and out, either way 💗

Playing with the kinetic sand one morning before home church:

They play together so well, I love it- it does this Mama's heart good to see it😍

Originally, everything (including schools) was supposed to be shut down for 2 weeks to 'flatten the curve' of Covid-19, except for dental offices which got shut down for 2 months right off the bat😒.  At the end of March however, they extended the lockdown for pretty much everything, including schools, until the end of April.  But now, here we are at the end of April, and in-person school is cancelled for the rest of the school year.  Unbelievable.  The amount of learning that my kids are missing out on is incredible.  Bryson says that in both math and Spanish, they've made almost no progress as it's just a constant review.  All of the work they've done since quarantine started can in no way negatively impact their grades, only improve them- and the kids know it!  So lots of kids just aren't turning anything in at all, which makes it really hard for the teachers to move forward with material.  Crazy times we're living in!

Sorry Eli, I'm going to post about your toe

(He'll forgive me eventually, right?)

So Eli has had this toenail issue for years.  I affectionately refer to the middle toe on his right foot as his 'dragon toe':

It's been getting progressively worse since he was about 3 years old.  Yuck.

We've seen the doctor several times about it, had medication and whatnot, but it's just never improved.  He hates it and is somewhat self-conscious about it (he doesn't like to wear flip-flops in the summer).  And trimming it?  Ugh, it's the worst!  I'll just say that he's sensitive and I'm not very patient about it.  The last time I trimmed it, it actually started bleeding!  Ok, I for sure felt bad about it and realized that it probably was more painful than I'd thought:

I had Nathan ask one of his good friends who is a podiatrist about treatment options.  He recommended having the nail removed and then treating with medication so a healthy nail could regrow.  Eli was pretty apprehensive, but was definitely all in!

He had to keep it wrapped for several days, which meant he couldn't really wear shoes very easily...

**OUCH**

Hopefully it comes back healthy!

 

Church at Home

Did I mention that everything has been cancelled?  Even church!?!

How prophetic President Nelson's statement at conference two years ago, "In coming days, it will not be possible to survive spiritually without the guiding, directing, comforting and constant influence of the Holy Ghost."  That, combined with the change to the "home-centered, church-supported" curriculum Come, Follow Me, is such a testimony to me that Christ is leading our Church.  

Changing to church at home was pretty much seamless!  We knew what to teach, what to do and how to do it.  We rotate which of the kids each week is the 'youth speaker', chorister, etc., and they've really learned a lot in the process:

The first week that Dallin was the 'youth speaker', he started with, "Hello, my name is Dallin Cotton, and I have been asked to speak..."  we all just died laughing... that kid 😂

It is such a special experience to have the sacrament in our home each week, and so wonderful that we have a Dad/Elder to preside, a Teacher to prepare it, a Priest to bless it, and a Deacon to pass it 💗

You can see on the far right of the picture Eli accompanying the hymn... I'm trying to get him to learn a hymn every week or two for piano, with varying degrees of success.  The kids piano teacher is 85+ years old, so she has obviously cancelled piano lessons for the foreseeable future but I'm trying to keep the kids practicing and learning.  Regardless, I think Eli's piano days are limited- his heart is just not in it. 😒

Last week, the moment the "amen" was said on the closing prayer, Eli and Hailee raced to get upstairs and I kid you not, Eli was half undressed before he was even out of the family room 😅

THAT doesn't happen with regular church for sure!

It's my birthday

The kids made me an amazing breakfast in bed this morning:

But my favorite gift of all, is that Tyler slept a 7 ½ hour stretch and then a 5 hour stretch- HAPPY BIRTHDAY TO ME!!  He might just be my favorite *wink* It was glorious.

Overheard

Dad: Oh, wow Eli!  Do you need to put on some deodorant?

Eli: No?  I put some on yesterday, {shrugs} it says it's 72-hour protection!

Easter

The kids all wanted to have a night-time flashlight Easter egg hunt:

The 'lego room' was filled with landmines- enter at your own risk! 😅

Decorating eggs:

Easter breakfast:

Dallin helped make the deviled eggs:

There were some really 'special' ones!

Eli wanted to make a carrot cake for Easter:

and darn it, I didn't get a picture of the finished product!  It was beautiful and super delicious too!

We missed having a big Easter dinner with our family this year... we're all getting rather tired of quarantine.  Regardless, we had a lovely dinner at home, even if the ham I ordered with grocery pickup was teensy tiny 😒

A quick pic with all the kids on Easter Sunday:

Tyler was about ready to lose it...

One of my siblings posted on our family text thread that "Churches are empty this Easter Sunday, and so it the tomb!"  I love that!  I am so thankful for Jesus Christ, the Master Healer.  For His example, His love and His Atoning Sacrifice.  So thankful also for the Peace that His Gospel brings.  I wouldn't want to live life without it!

One Month Old (already?!?)

I mean, just look at this morsel 😍

His 1 monthiversary (👈I just made that up...) happens to also fall on Easter:

So strong!

Lookin' dapper!

At his one month visit, he weighed 8lbs, 10 oz- he's gained 2 ½ pounds in a month!  I'm really not surprised because he is a great eater (and sleeper!).  Most nights, he's going a solid 3-4 hours between feeds... I change his diaper, he eats, burps and goes right back to sleep all within 15-20 minutes. 💗  I mean, I still feel like a zombie, but a sane zombie, not a crazy one 😆