Five Months Already- Jaden!

Wow! This little dude is growing up on me.

He's got a couple of cool super-human tricks:

Toe sucking

and

Fist in Mouth!

He started on solids this month.

He can hold his own spoon and practically stand up out of the Bumbo chair.

I'm not kidding when I say he is a strong kid- he has strength like you wouldn't believe for his age.

You've got to keep your eye on him.

He also learned how to sit up this month.

Go Jaden!

He will sit and play with a toy on the floor for awhile now. I think he's liking his new view.

He's always alert and looking around at everything and everyone. He has a TON of energy and NEVER holds still. He's always either stiff as a board of as wiggly as a little worm. He's constantly looking, flipping, rolling, kicking, jumping, sucking, grabbing.....you get the point.

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In his 5th month, he went swimming for the first time & loved it.

Loves the water!

And also went to his first drive-in movie.

He wiggled through the first movie, slept through the second.

He also celebrated his first 4th of July.

He spends his time going to soccer games, Dr. appointments, errands or wherever else we shuttle him along to. He usually takes 2 good naps and maybe another cat nap in there as well. He still doesn't sleep through the night and he still spits up a TON! Just call him Pukus.

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I will not lie, he has been a challenging baby. Call it colic, call it fussy, call it stubborn or demanding- whatever it is, it's been difficult. We've exhausted all resources in trying to figure out his tummy issues. These are all (+ one: Enfamil GentleEase) the different formulas we've tried him with so far in his short 5 months of life:

Milk or lactose based stuff definitely gives him really bad tummy aches. I finally threw in the towel with nursing him because he'd get belly aches and just cry in pain for a long time, soy formula still makes him spit up, but is easier on his stomach, we tried Alimentum and he did okay for awhile and then he didn't like it anymore. That stuff stinks too. We've been given a prescription for prevacid as well as two other stuff- none of which seemed to help. I took him to a naturepath and he said that he had an underdeveloped liver and gallbladder. He also suggested that his pancreas wasn't releasing enough enzymes. Whatever that means. We got some homeopathic drops and the verdict is still out on that.

Bottom line is: we're still trying to figure it out. It could be a number of things. Right now he's doing pretty good with Soy Good Start. Meanwhile, making sure we've always got extra clothes and plenty of burp rags with us.

{P.S. if anyone is interested in opened, but hardly used cans of any of these formulas- let me know.}

But, despite it all.....

He's loved... and that's all that matters!

The Mom Salon

In the land of make believe......

I am the client.
Mike (a.k.a. Jace) is my hairdresser.
He's been doing hair for about 6 weeks.
Before that, he raced ramps.
The shirt he's wearing shows what he used to do, before hair of course.

Rylee is always the make up assistant.
And by assistant, I mean the one who tries on all the lip stuff, occasionally a little eye liner on the lips as well.

This day, I got my hair picked.
Blow-dryed.
And round brushed.

Pretty sure they're accepting new clients.
Free, if you're patient enough to let them do it.

{I remember doing similar stuff when I was a kid. Except it involved barrettes, my dad, a cup full of water, rollers and a little black comb. My dad was a good sport.}

Celebrating July 4th

Rexburg Parade

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Free hot dogs & water after parade at Rudd & Co.

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BBQ at my parents

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Big blow up bounce house, slip and slide and other water fun with cousins

+

Made up kids parade at G&G Price's house

(Justin/Jace drove with a bunch of cheering girls in the back)

+

Fireworks!

(Avoided crowds & watched on the outskirts of I.F. and put on our own show later)

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Lots of Red, White and Blue

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One Great 4th of July

Girly Girl

Don't let the buzzed-do fool ya. Rylee is definitely a girly-girl. Give this girl jewelry, shoes, lip gloss, painted fingernails or an armful of purses and she's one happy lady. A total girl and little princess.

She LOVES being fancy.

"Woo, woo look at you, you're a fancy lady!"

She's Once....Twice.....

Three times a lady.

Church Bag

Rylee packed her own bag for church today.

When we got there, this is what we discovered:

A doll bottle, old cell phone, 2 of Jaden's brushes, a play coin, my necklace and 4 foot/heel scratchers.

Atleast she brought all the essentials.

Soccer Mom!

It's true, I'm officially a soccer mom! Besides the fact that I drive a suburban and live in Rexburg, Jace started his first organized team sport last week. His team is the Burton Bulldogs! He loves getting all geared up (shin guards, socks, reversible soccer shirt). He's a little nervous to get in there and get the ball- he said it's too crowded because all of the kids are trying to kick the ball at the same time. Yep- sounds like soccer to me. I think he'll do great once he gets the hang of it. Never mind Justin's "constructive criticism" on the sidelines- I think he forgot it was Jace's first time playing soccer. I don't even want to imagine what it will be like when/if Jace plays H.S. basketball. I'm seeing a lot of "pep" talks in our future.

Just go have fun! Only advice a mother (who is terrible at sports) would say.

Conflicted

This isn't the best picture of Rylee, kind of a fake smile going on, but that's beside the point. As I was flipping through recent pictures, this one caught my eye. I was like, "Oh my gosh, Rylee had hair-like pony tail hair." It might sound weird, but at times I forget what it was even like. What she looked like with it, how it was to fix it, etc. This picture was taken only 4 months ago.

At the first of July, Rylee had treatment, along with her every 3 month spinal tap and the same type of thing hit me, "Rylee has cancer." Like her hair, sometimes I forget what we're dealing with. Funny how your new normal sets in and stuff hardly phases you anymore. Do they call that resilience?

I've talked before about our sometimes bizarre reality, but from time to time, I'm reminded of it again. Like when a nurse or someone is asking us the typical health history questions: has she had trouble with XXX, history of ear infection or whatever. The answer to most questions is no, yet she's got the mother of all diseases: Cancer. The last question is always something along the lines of "So..would you say that she is overall a healthy child?" Um...yeah, if you don't count the cancer?!?

None of the above:
Another instance, along the same lines is one I faced with her Dr. this month. Rylee has to take an anti-pneumonia medication and we've tried a couple of things. Her Dr. was asking me which one we wanted to do. Here were my choices.

1) Septra- Oral at-home med. Taken 2 times/day, twice each week about 4 mls. (Rylee started out on this, then it caused her to have terrible body rashes all over her arms, chest, down to her leg- it itched her to death and she was miserable, so we discontinued use. Why deal with a body rash when you're already dealing with cancer?).

2) An IV med that gets pumped through her line once a month. (Sounds simple enough. We went to this option for the past few months- the trouble is, besides the fact that it is very expensive, it takes about an hour for them to get the med ready, another hour to pump it through and Rylee hates to stay hooked up to stuff. It always ends up turning our already 5-6 hour treatment day even longer and let's remember that she's only 2. She wants to be out doing kid stuff just as much as the next kid. And.... as a parent, I have 2 other children and other responsibilities. The longer I spend at the Dr., the less time I have for them.)

3) Dapsone- Oral at-home med. This one you take only once/week but it's 15 mls. each dose (that a fat syringe and a half people!) Oh, and the side effect is that it could turn her blue- it has something to do with the way it effects the oxygen in your body. Great. Sign me up.

So, since we already know #1 is not an option, I didn't feel like staying another 2 hrs. at the Drs. office (we had started our morning at 6:30 a.m to the hospital for spinal tap, stayed there until 10 a.m., had office visit and chemo at 10:30 (but waited nearly an hour in the waiting room), after that got over it was already 1 p.m. and we needed to call it a day- the kid needs lunch and a nap).

I picked #3. I'll let you know if we end up with a little smurf.

I wish there was a #4 that was none of the above instead.

Speaking of which..... there is nothing worse than sending your 2 year old off alone with a complete stranger (nurse) back to a bright, cold operating room where everyone in the room is masked and wearing funny blue scrubs and caps. She must be terrified. Talk about out of your comfort zone.

She's crying and looking back for you to save her....and you can't.

I felt very conflicted this month at treatment. I cannot believe at times what we're giving consent to do. If you read through the list of possible side effects for the drugs they put inside of her, you'd understand the conflict. Yet.. .in the end, what other choice do we honestly have? Even if we wanted to decline treatment, we really wouldn't have a choice. We'd be taken to court and the court would order us to have this done. It's a conflicting feeling considering the magnitude of the decisions we make every.single.day.

How could I ever possibly forget this battle we're fighting?

Conflicted. Good news is that we are down to only 5 more spinal taps and 17 more hits of chemo.