Why is Toilet Paper So Much Fun

to unroll (and eat)?

{this is why we keep the bathroom door closed - usually}

Max update:

So we're just finishing up the antibiotics (just in case he had walking pneumonia - although he never acted the least bit sick). He still has a runny nose (pretty sure it's allergies), but the cough is gone. Both rashes are still there. I think the up and down oxygen stats from last week were a fluke. His stats have been fine ever since - or maybe the antibiotics kicked in REALLY fast :)

We created a make-shift oxygen tent by draping a sheet over his crib and duct taping one end so he wouldn't pull it in on himself in his sleep. With 2 liters of oxygen pumped into the tent, the oximeter hasn't beeped once during the night (it beeps when he goes below 88). The tent I can live with. Cannula, not so much. So at least this seems to be a good temporary fix until we can get into a new ENT (appt in July) and get tonsils and adenoids out :)

And we have 3 different speech therapist evaluations coming up this week! Sandy PCMC Rehab, Monica Ferguson (from the UofU), and (don't fall off your chair) DDI/early intervention (yes, after a year and a half of making requests)! Someday soon this kiddo may be making more than a 'd' sound ;)

Butterfly Project Gone Amiss

Piper had such a great time with the Butterfly Garden we got her for her birthday, but we couldn't release them outside because it was too cold. So she has been begging to get another set now that it's warmer. We finally agreed and they came in the mail a couple of weeks ago.

The caterpillars quickly grew big and fat and hung from the lids to form their chrysallis'.

We put them in the 'garden' cage and they began hatching about a week later.

We fed them flowers and oranges.

Piper especially loved showing them off to her friends.

We agreed that after a few days we would start releasing them outside one at a time.

So yesterday we agreed that we would release the first one. We scoped out the best flower spots in the backyard in hopes the butterfly would stick around for awhile.

We decided on the snowball bush. Piper was a little nervous to hold one, so I got one out of the 'garden' and placed it on a flower.

Within a minute or two the butterfly flew up to a higher branch, and then flew away.

MELTDOWN!

She must have cried for at least 30 minutes. She told me I was the worst mom in the world. She said it was all my fault that she would never see that butterfly again. She wished I would go be the mom of another family. She kicked, screamed, wailed.

I thought she understood that the butterfly was going to live outside and we would not be putting it back in the cage.

Apparently not.

There is NO way she's releasing the other nine. They will sadly die in the garden {except for the ones I plan to secretly let go this week :)}
***
'Course today I was back to being the best mom ever as we had rootbeer floats after dinner. But then I quickly returned to the worst mom ever when I made her get in the car when it was time to leave her cousin's house. Steve was actually the one who said it was time to leave, so I'm not sure why I got all the blame. Hmm.

Oh wait - there's more!

So we went to see Dr. Durham this morning - partly because Dr. Pfeffer said his airway sounded funny - not a wheeze or a crackle, but more like his airway was collapsing and then opening. He does have a runny nose right now and a little cough, but doesn't act the least bit sick, so ?  Max has also had a rash on on the back of his neck for about two weeks. At first I thought maybe it was from the 3 weeks of antibiotics from the pneumonia last month. I've changed all of his bedding several times, thinking maybe it was something there. Two days ago a rash appeared on his arm in the elbow bend - looked like eczema. And to top things off, before putting the oxygen on him before bed last night, I put the oximeter on to see where he was at. I had checked him a couple days ago with his cold symptoms and he was fine at 94-95. Last night, he was all over the place - from 100 down to 78! He would go right back up after dropping, but was averaging in the 80's - not so great. Same readings this morning after taking the oxygen off.

So, in to see Dr. Durham this morning.

The rashes - arm, eczema - neck, ?? something from his environment - maybe an allergy from his pillow, the laundry detergent, who knows. Got some more eczema cream - even though we still have Piper's prescription for the same stuff. Check.

Got a referral for Smith, Grimmer, or Muntz (ENT's) to consult for tonsils, adenoids and tubes. {I think he was a little hurt that we didn't want Dr. Bradley doing the surgery - sorry.} Check.

Lungs - the xray showed: "1. Bilateral perihilar bronchovascular prominence - could represent prominent increased vascularity, reactive airway disease (asthma type stuff) or viral illness? (yes, the xray doc put a question mark on the diagnosis)

2. Interval clearing of the right middle lobe and lingular infiltrates."

So, Dr. Durham prescribed azithromycin in case he has walking pneumonia. And we'll be keeping the oxygen handy.

Seriously - forget spring - we need summer!!!!!

* so tonight, his oxygen levels are right on at 94-98 - go figure
* and we have an appt with Dr. Smith in July (Pfeffer recommended him above the others)

Garbly Goop Interpreted {aka sleep study follow up}

We saw Dr. Pfeffer (pulmonologist) this morning (yes, we paid out of pocket, since she doesn't take our insurance - joy) to go over the results of the sleep study Max had in April. Her conclusion: CLASSIC sleep apnea.

My head is spinning with all the information she gave us. I wish I would have tape recorded our conversation. Basically, as you can see from the graph below, Max has good sleep rythms, but does desat. And opposite of what I thought about the sleep study being inaccurate because of waking so much due to wires and cannula, Max would probably test much worse if he was in REM sleep longer, because that is when he desatted most.

 I'm probably not explaining that clearly, but at any rate, the kid sleeps hypoxic. Not as bad as the majority of Ds kiddos with sleep apnea, but enough that we need to fix things if we don't want his brain and other organs damaged as he sleeps. So back on oxygen at night. Ugh. I didn't want to hear that.

Other recommendations include putting tubes in his ears, having his throat scoped for reflux/aspirating issues, taking out his tonsils and adenoids, and changing ENT's (our current ENT said there was no way he had sleep apnea because he doesn't snore - he also doesn't have surgery privileges up at Primary's as he isn't a pediatric ENT). We talked about the possible silent reflux issue that the report mentioned and our pediatrician brought to our attention, which is why Dr. Pfeffer recommends the scope - to see if there is damage to the esophagus - if not, no need to go back on reflux meds.

She also listened to his lungs and said there was something sounding very strange. Not a wheeze or a crackle, but more like his airway collapsing and then re-opening. He's got a little cold, but??? So we have an appt with Dr. Durham tomorrow for a chest xray.

There was so much more, but I think that's the basics. I asked if we should do an at home oximeter recording, but she said it wouldn't tell us any more than we already know. She gave me some great suggestions for duct taping a sheet over the crib if Max fights the cannula and we want to try more of an oxygen tent with blow by O2. But I was surprised how well he did with the cannula when he had pneumonia last month, so hopefully he cooperates.

A smidge of the garbly goop:

We also have a sedated echo scheduled for August with his cardiologist, so we'll be able to see if he has any related pulmonary hypertension.

I think it's time to appeal his getting kicked off medicaid last year!

U2

Over a year after buying the tickets, we finally got to see U2 last night.

Cool stage. Good show. Bono's new spine seems to be working well. At his age, I'd be ditching the leather pants, though, but whatever.

{cell phone pics}

{These two images stolen from sltrib.com - my cell phone has no zoom.}

The Blue Car

An old neighbor gave us this blue car when they had outgrown it. Piper has loved it, and now Max does, too.

Our neighbor, Thomas, seems to like it, too.

He also still loves balls.

The Tables Have Turned

Max got to be the visitor!

Daddy is still a little sore, but the hernia repair was successful and he is back at work today.

Probably in part, due to Grandma Sharron's gift basket he got in the mail :)

Our Graduate

Piper graduated from preschool today!

She was very proud, and very serious. I think she was nervous her cap would fall off.

{Piper comes in at the 14 second mark}

Graduation was suppose to be outside, but it was raining, so they switched it to our church building so they could have both the am and pm classes at the same time.

After the graduation ceremony, the kids put on a cowboy themed program... but Piper didn't want to find her cowgirl hat this morning, so she didn't dress the part.

A few highlights:

Zippity Do Dah...

Home on the Range...

On Top of Spaghetti...

The Old Red Wagon...

We gave her a bouquet of bright colored daisies, which she loved, but somehow I didn't get a picture of her with them. She even took them across the street to show the neighbors. We let her pick where she wanted to eat dinner tonight. So we ended up at Shivers - not my favorite. And Steve has a hernia repair surgery in the morning, and that's probably not the best thing to eat the night before surgery either - oh well. Max loved it - since Piper only ate one or two bites of her corndog, he got to doublefist - one in each hand. He was in heaven. {Although when we first got our food I wouldn't let him hold his own cause I thought he might throw it on the ground. Oh my - I think if he could use words he'd have been swearing at me. Seriously, I have never seen him so mad. He screamed right in my face very angrily and threw his french fries across the table - twice. And then he threw his sippy cup and hit Steve in the forehead. Temper, temper! When he finally calmed down, I let him hold his corndog and all was well.}

Tonight she wanted to watch The Bee Movie, since they graduate in that movie, too - with the exact same color cap and gowns! And she needed a special couch fort, since it was her special day and all.

Preschool Puppet Show - for the Grandma's

Piper's preschool class put on a puppet show for the mom's last week.

This is the story of "Goldilocks & the Three Bears", with Piper as Goldilocks.

PlayGroup

Not sure if Max was jealous of Piper ignoring him to play with Gage, or what, but he was a big crybaby today at playgroup :)

But really, Piper was having a blast with Gage, a year older than Max. Look how cute he is - can you blame her?

Our newest friend, Sophia - she just moved here from Virginia.

Grumpy Max :)

Leah and Ellie (twins)

Kaelyn

Justin

 Kaelyn & Ryker

Debbie & Ryker

Thanks for hosting, Kenzee!

Who's a Tornado?

I walked into this this morning...

Apparently Max likes a clean table surface, or he didn't like the way I had sorted the mail - not sure which.

Piper taught Max to climb up on the chairs last week. Which then led to climbing on the table. So, over and over, I keep reminding everyone to push in their chairs. Too bad it was me who forgot. I have no one to blame. I guess I should be proud of his gross motor skills?

Buckets & Bins

He just loves a good bucket or bin to sit in.

Cowboy Day

It was cowboy & carnival day at preschool Thursday. Piper had been waiting for this all year. {Last year we had to miss it as we were in Texas finalizing Max's adoption.} That's a butterfly face painting on her cheek.

Max got to ride, too.

Immediately after taking this picture, Max fell off the horse -oops. Sorry buddy - just wanted a picture and your sister wouldn't let you sit in front so she could hold on to you ;)

The bounce house - always a hit.

Dinner with Sarah & Friends

We met Sarah & some of our other friends for Cafe Rio the other night.

Here are the girls just hanging out.

Here are a couple of the big kids hanging out.

Polly (Kristen's mom), Phil (Jonathon's dad - Deedah movie), & Joyce (Sarah's mom)

Love this one of Sarah & Morgan!

Piper loves making new friends :)