Exotic Camping

For years, we've had a Labor Day weekend tradition where we go camping

with our super close friends, Ron and Elly Moomey.

Kean's cancer put a crimp on that last year and this year.

So Elly had this grand idea to still get together (for dinner) and

have s'mores over a camp fire. 

 It was a perfect night.

They live out in the hills above Star

and between the smell of smoke from the fire, the taste of gooey

marshmallows, warm chocolate, crunchy crackers

and a few mosquitoes thrown in... 

 it was almost like camping

without all the prep work before or the laundry afterwards.

After s'mores, Ron chased Reese around on the scooters and

Kean and Bryon took turns zooming on a skateboard.

I'm certain Kean wore himself out with all the giggling and clapping.

He should sleep well tonight.

And he was almost dirty enough when we headed home

that you would've thought we actually did go camping!

Cha Ching

Poor Keanut.

I think he was traumatized at his Ear, Nose and Throat Doctor's appointment.

Three of us held him down so Dr. Schwarz could try and work on his ears.

Down syndrome kiddos have tiny ear canals which makes it nearly impossible to get in there

and try and examine and clean out any gunk.

Dr. Schwarz succeeded with one ear but gave up with the other.

Kean may be small but oh, is he strong.  Especially when he is screaming

and fighting us holding him still (or trying to do that).

We stopped in at the hospital to see the big bake sale.

We sold out on nearly everything and made about $650 on just the goodies alone.

Plus we got a lot of folks excited and informed about the big Baldapalooza concert

coming up in a few weeks.

 I had to laugh, it was like old home week for me at St. Luke's.

We saw three of Kean's doctors, tons of the nurses we have gotten to know

from our stays in Ante-Partum, NICU, PICU, Pediatrics, MISTI, and Pediatric Oncology.

That doesn't include all the folks from maintenance, food services and housekeeping

that we have met along the way.

It was crazy.

Add to that, my cousin, Ginger who just gave birth to a baby earlier this week.

She was in my old room in Ante-Partum and had my favorite nurse Liz taking care of her

(Liz was the nurse who helped deliver Keanut) and they both came by the bake sale!

 Oh, and before my 95 year old Grandma and my mom took Kean home

for a nap etc., we all went up to NICU to meet Ginger's new baby, Weston.

He weighs 4 pounds 11 ounces and seemed so very tiny.  I can't even begin

to remember Kean being even smaller than that.

I also ran into my cousin who just started a few months ago at the hospital as a Neurologist

and then went upstairs to visit my Aunt Marianne who is in the hospital for a few days

fighting cancer.

We are hoping she goes home tomorrow.  While the hospital is filled

with some of kindest people you'll find-- it is still not a very fun place to be.

Today was kind of an exception.  I got to see all the good people

but got to walk right out the door without waiting for a doctor's permission when the bake sale was over.

That was a nice change.  

High Fives

The Keanut man felt good enough today for a full riding lesson.

He's really into singing the bumble bee song... so we sang

while he rode.

Tonight we bagged up what seemed like a gazillion cookies, brownies

and other treats.  Tomorrow we are having a Baldapalooza ticket sale

disguised as a bake sale-- at St. Luke's hospital in their main lobby.

Kean and I are hoping to make a little visit after his doctor's appointment.

Second Chances

Day two of school and the great bus saga has come to an end.

We were at the bus stop at the new time and the driver was only a few minutes late.

When I mentioned yesterday's fiasco he just shrugged his shoulders--

so much for apologies for wasting an hour of my life!

 I'd like to say Kean has turned a corner-- and he has in some ways.

Yesterday's vomiting and runny diapers are just that-- yesterday's.

But he's been pretty low energy for much of the day.

This is one of those times where I wish he could talk and tell

me how his little body is feeling.

Guess that face speaks volumes.

Deserted!

The first day of school started off quite rocky (but ended up great thank goodness).

The girls and I headed down to the bus stop about 8 minutes early to snap some

first day pics.

 We snapped and snapped and waited and waited...

 and get this... the bus never came.

Nope.  Never.

 The girls even resorted to doing dance numbers in the street to kill some time.

With only a few minutes to go before school started, our neighbor

took her son and my girls.

All together we waited close to an hour for that dang bus before giving up and going in to call the school

transportation department.  After several calls and conversations, they told me the bus driver

did stop and was only a few minutes late.

Whaaat?

I stopped myself from saying they had a liar on their hands but told them it didn't add up

and they needed to figure this out.

Hours later, I get a call from the top supervisor saying this driver had told them

as it was, he would not be able to get the kids to school on time-- so he moved up the times to pick up

and was at our stop ten minutes earlier than we had been told to be there (just yesterday afternoon at the school).

Big failure to communicate with the parents, eh?

I wonder how full his bus was if he was at all the stops that early.

What a cluster.  And I'm kind of worried to meet this bus driver tomorrow-- he sounds like an idiot.

An idiot driving my kids to school each day.

So not excited.

The girls did not ride the bus home.

Reese had her big check up with the doctor now that she's 7.

Are you ready for this?  She is in the 3rd percentile for weight and height.

We tell her she's "small but mighty".

She weighs a whopping 39 pounds.

Kean, came in yesterday at the hospital at 29 pounds.

What's up with my shrimpy kids?

By the way, Kean is weathering his Chemo blast as expected.

He vomited three times today-- once right on top of his ipad, which we

now refer to as his ipuke (since he's tossed on top of it now several times)!

Byron has this crazy theory that Kean is getting motion sickness from watching

Cars and that is what is making him throw up.

Nice try.  Wish it was that simple.

A Date With Chemo

We made our trip down to the hospital for Chemo today.

Kean always gets a little riled up at home before we go.  He knows

exactly what's ahead of him... the minute I get out the numbing cream, plastic

wrap and tape to cover it up.

But once he gets there, he's fine.  And why not... he's surrounded by nurses

and Child Life Specialists like Jen who play with him and make him feel like a rock star!

 We had a special "Chemo Date" go with us today:  Jan Ramirez.

She was Holland's first grade teacher, then her sixth grade teacher last year

and our entire family adores her.

I tweaked my back last Friday (lifting my little lug named Keanut-- gotta get him walking).

So Jan was wonderful to lift him and carry him as much as possible.

We met with his primary Oncologist, Dr. Camilo today.  And most everything

looks good.  There's a bit of concern about why his testicles have ascended again--

I guess testicular cancer is one of the lovely side effects of all this stuff he's on-- so

poor boy, they sure examine his junk quite thoroughly with nearly every visit.

Nothing big to worry about yet.  They're just watching that closely.

Today's Chemo dose sure took a long time to get from pharmacy.

We got through most of Cars.

 We finished just in time to race home, get everyone fed, take Kean to my folks

and then head over to the school for registration and meet the teachers.

Talk about chaos.

But we survived.

Poor Reese didn't get the teacher she wanted and sobbed but quickly

pulled it together when she met her new teacher who seems quite wonderful.

Holland was thrilled she got her locker open on the first try.

Oh, the stuff that stresses them out.

The first day of school will come early tomorrow.



Coo Coo Pachoo

Greer happily provided me with pictures from their great camping adventure over the weekend.

In our home, we call bed head hair-- "Coo Coo Pachoo" hair.

And clearly, if a brush was packed for the trip, no one bothered to use it (especially Byron).

 This picture I get...

well maybe, I'd personally take the wrappers off first.

 But this one defies explanation.

 Just as long as they had fun.

And it sure sounds like they did from all accounts.

Yes, our house is back to full decibels.

Kean was giggly all night.

Good thing.  He has a trip to the hospital tomorrow for Chemo.

And the girls have their day at school where they drop off supplies, meet their teachers etc.

Should be one heckova looonnnng day.

Eerie...

There's something going on in our house that we don't see very often.

And that's quiet, silence, peace... well, you get the idea.

Byron took the girls for a camping weekend

while Kean and I stayed home.

I've had to work a little extra to keep him entertained.

And it is so nice.  He is feeling good and acting happy.

That is, probably until Monday when he gets nailed again with Chemo at the hospital.

I sometimes feel like we are hamsters in one of those spinning wheels. 

It's just a non-ending cycle of getting him feeling good just in time to start the process over again.

 Oh and what's that saying?  While the cat is away, the mice will play?

Since Byron and the girls were gone, Kean and I had a little dinner party at the house last night.

It was my dear friend, Susan Rhoggani's birthday and since I couldn't go out with Kean,

we opted to have "the girls" come here.

 Susan is getting ready for a trip to France, so we decided to have a French themed feast:

quiche, Salad Nicoise, cheeses, crunchy bread, grapes and a very large blackberry tart (pie).

We had such a lovely time staying up too late and talking.

(Kean didn't last very long).

Our Baldapalooza board also had a meeting today with the manager of

several of the musicians who will be playing at our music festival.

He just happened to be in town.

Talking with him got us all excited about the caliber and quality of the artists.

This is gonna be one fabulously fun night.

Oh, the tv ads should start next week.

Wanna sneak peak?



Dark-Thirty

Never a dull moment around here, I tell ya.

We had a storm blow through here and our

power went out just as I was cooking dinner.

That's not such a big deal but the fact that it stayed

out until bedtime (nearly 5 hours)... it got a little tricky.

Byron is taking the girls camping tomorrow and oh

I had just about a gazillion things I needed to get done tonight.

Oh well.

Kean had his riding therapy this morning

and was on a new horse:  Romeo.

Then it was race home, drop him off and motor on over to our Baldapalooza meeting.

It is fast approaching (Sept. 14th - yikes- get your tickets now at

www.baldapalooza.org).

I had to beat it home from that because he threw up

and poor Holland was freaking out.

No, not the flu again.  Just his regular Chemo throwing up stuff.

This afternoon, Lindsay came over for a few hours to work with Kean.

One of the things we try to do each day is put his hearing aid in and keep

him from pulling it out by reading stories, playing games and singing songs.

He is fixated on that awful song...

I'm bringing home a baby bumble bee...

won't my mommy be so proud of me.

He likes to sing it over and over again.





Maybe I should clarify.

He likes to hear us sing it over and over again.

But he sure lets us know which song he wants!

Chit Chat



Milestone alert!

Maureen, Kean's Occupational Therapist was here this afternoon.

We were outside swinging Keanut and he was doing great telling us to "go"

and saying "ice" and "cold" as Greer made and fed him a snow cone.

And then he did it.

He strung two words together... and guess who just happened to capture it on video!!!

Yes, we get overly excited around these parts.

This evening, Greer decided to play a little dress up and since Kean was an easy mark--

well you can see that she had her way with him.

The problem is either she doesn't have the best aim or Keanut doesn't like to hold still.

Snarky

What a roller coaster our lives are.

Kean has finally been feeling better and then he goes and wakes up from his nap

today with a low grade fever. 

Instant stress!

Lindsay was here to work with him and she did get a few stories read...

before Snarkola started pulling her hair.

He sure acts out when he's feeling lousy.

Thankfully, she has plenty of patience.

And I clearly must continue to learn patience before stressing.

His fever is gone this evening.

I finally got this soon to be classic video of Grandpa Bodily to load.

Remember, once a year he steals the show by showing up in his "Where's Waldo"

vintage swimsuit.  We love this!



He lines all the kids up and acts like he's gonna jump in the pool with them.

of course half of them jump in and we just laugh and laugh.

He does eventually get in.

He's the coolest 81 year old I know!



Where's Waldo?

I so give up.

I'm heading to bed after trying for an hour to get videos to download off my phone so I could post them on this silly blog.

I'll try again tomorrow.

For now, here's a sneak peek.

That's Grandpa Bodily in the pool holding Kean.

Once a year (and tonight was the big night), he dresses up in his old fashioned,

"Where's Waldo" outfit and thrills the kids with his antics.

 It is THE BEST!!!

And the videos are heelarious!

For now, check out Reese who stole part of the costume.



Eureka!

Woot, Woot!

I got just what I was trying to get last night but failed.

So let me set this up.

We've been working with Kean on getting him to identify his body parts...

and he's got several of them d.o.w.n.

Several-- but not all.

He points to his cheeks when we ask him where his eyes are

and for his belly button?  Well, just you wait.

(I promise, it is worth the wait)

We've all been laughing so hard over this that we haven't had the heart to correct him.

But now that it is captured forever on video... I guess it is time to get to work.

Otherwise, I'll die of embarrassment if he's sixteen and still pointing to his

netherlands.

Foiled!

Dang.

I have been patiently waiting for Kean to be in a good enough mood

to "perform" for me on video.

And tonight I got him doing just the hilarious trick I wanted to show you.

But for some reason when I transfer the video from my phone to the computer

it cuts off the last second-- which is the big pay-off.

So I'll have to try again later (since he's now in bed asleep).

Meanwhile, please sit back, relax and enjoy these pictures Pam

sent me from yesterday's adventures at Roaring Springs.

Reesey looks like one happy girl.

I particularly love this picture--- Dipping Dots ice cream for lunch!

 And love these pictures of the Leavitt cousins kicking back on the couch!

Stay tuned for the promised video.

It will soooooo be worth it.



Jam Packed

I don't know if you remember but on Tuesday, Holland and Greer got to go

to Roaring Springs water park with my dear friend Pam Brown.

Reese-- we kept home since she hadn't been feeling well.

Today was her turn and Pam surprised her by inviting one of Reese's best friends, Elly.

 From all accounts, they had a grand time racing each other down the slides,...

 floating down the Lazy River

and having ice cream for lunch with "Aunt Pam".

 They went straight from the park... to my parents house

where we threw the official birthday party for Boy Wonder.

He and we were all too sick last week to do it up right.

So tonight was the night.

Pam had this ice cream cake made specially for our little guy.

 And yes, look at that face.  She sure hit a home run.

 We kept it pretty simple.. we had dinner and opened presents

with my brother, Doug and his family, Elly and Ron Moomey, Pam and Rod Brown

and Chelsea Borup and her dad Mark.

Kean's Grandma Kay sent him the cutest little toy cars...

 and Ron and Elly gave him the movie Cars 2.

He was so funny.  He opened that up, climbed down and just

stared and stared at the movie and mouthed "Cars".

Never have I seen a child so obsessed with a movie-- make that a franchise.

Too bad we didn't buy more stock in Disney/Pixar.

I think he had a good day.  He seemed happier today than he's been in weeks.



Look Ma, No Hands!

Time again for Kean's horse therapy lessons.

The boy is getting more and more confident on the horse

and doesn't like me or the person walking on the other side of him

to touch him.

 They are so great at Little Feather Ranch.

One Saturday out of each month (August 31st this time), they

open up their arena and give free rides to special needs kids.

They also, usually let one of my girls hop on the horse

at the end of Kean's lesson for a few times around the arena.

Today, Greer thought she was in heaven.

Our other interesting news today... Kean had his 4 year check up

with his Pediatrician, Dr. Sandstrom.

We adore her... even though she has been dethroned as his doctor

and can't give him any shots or really do anything without the

approval of the powers that be at the cancer clinic.

Anyway, Kean is in the whopping 4th percentile on the growth charts.

But on the Down syndrome charts he is 50 percent for weight

and in the 70's for height.

Who knew!!!

The bad news today:  he has a red throat.

The good news:  a Strep test was negative.

He seems okay tonight.

Don't need another roller coaster of a week.

Kissable Lips

The teeniest, tiniest part of me is a little freaked out that Kean

is now four and is still not walking or talking.

I know, I know, no one will hold it against him for being so

behind in his milestones.

Plus,  he has had a boat load of other

things to focus on-- like living perhaps!

Anyway, I'm having to remind myself that slow and steady wins the race.

He had two rounds of therapy today

and another this past Monday.

Keanut wasn't too interested in working too hard for any of them.

So we've spent a lot of time swinging.

His favorite new trick is to pretend he's bowling his sisters over.

And they are more than glad to give their Oscar worthy performances

of flying through the air and then rolling on the ground.

The boy just giggles.

Andrea, his Physical Therapist (who is due in 2 1/2 weeks), about had to

force him to use his feet and legs.

Lucky we had Greer to help us bribe him with a slushy.

We tried the playhouse ladder but this was about as good as it got.

We did, however, get a lovely shade of slushy lip color

on the boy before it was over.