Snore, Snore!

Enough about bodily functions.

As much as I'd like a break from it-- I'll at least give you a break

from the "Poop Chronicles" (even though it wasn't quite as epic today).

Kean had two therapy sessions-- he was just okay and a doctor's appointment

with his ENT.  He had a lot of wax in one ear

and it took three of us to hold him down for the doc.

Trust me, he's much stronger than he looks.

Here's the good news:  even though he still has one tube in one of his ears

(it's not functional), the doc says we don't have to come in for SIX MONTHS!!

And if he is in good shape then-- we get to graduate from his office.

I can't tell you how nice it will be to have one less doctor on our long list.

When we got home... we had a surprise on our doorstep-- a package

from Lexington, Kentucky.

If you are a regular reader, you'll know that Kean is part of the 

I Run For group and has been matched with a runner who

runs and participates in races with Kean as her inspiration.

 Clair's 7 year-old daughter, Amanda made Kean his very own

Cars pillow.  Not only did he keep reverently saying Cars over and over again...

but he put his head down on the pillow and made a snoring sound.

We about died laughing!

 Thanks Clair for making a sick boy very happy.

He got Methotrexate today-- dang, just when he

seemed to be turning a corner!

As for my dad, he had his skin cancer surgery today.

The doctors told my mom all went well- they took

out pretty wide margins on his face and are pretty

confident they got it all.

Thank you for the prayers and support.

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.  

A Milestone

Kean and I celebrated tonight with a walk and a yummy dinner Elly Moomey brought over.

Byron and the girls are still on their camp-o-rama.

We had Chemo today...

a Chemo treatment that's quite significant in our world.

Kim Leach was our fun date at the hospital.



Today marks the final day of all the hard core Chemo phases.

We get two whole weeks off before starting the Maintenance phase..

the phase we've been pacing ourselves and praying that Kean would be

strong enough to make it to.

He will continue to get Chemo until September 13, 2015... but some of

the more wicked Chemotherapy drugs (the ones that make his hair fall out

and send him to the hospital etc.), are behind us. 

Dr. Camilo told us that a lot of parents fall into a depression

when they finally get to where we are.

My dear cousin who went through this same trial with her daughter

put it like this.. she said so many months are spent in survival mode,

just trying to operate under such extreme stress that when you finally

get to this goal of Maintenance-- you collapse from the sheer exhaustion

of the intense pressure of trying to keep your child alive, minimize his pain and

hold the rest of your family together.

I have so much support and I've had that support all along this journey,

that I think I'm in a pretty good place to handle this transition.

We still have a long, icky haul but I firmly believe the worst

is behind us.

By the way, Dr. Camilo told us today that Kean has done "much better

than he ever expected".  Dr. Camilo is a man of few words...

so coming from him, that was huge.

We have so much to be thankful for, don't we!

Chemo Cocktail

What a close call.

   Kean's counts were pretty low today.

Dr. Chang had to do some number crunching-- her verdict?

He could go ahead and get Chemo

but we stayed at the same amount he got ten days ago

instead of bumping up to a higher amount.

Here's a few highlights from our day.

Pam Brown was today's date.

 She swiped this uber cool tractor from the playroom to take with us

for the day.

Here it is with Keanut during vitals.

 Kean's posse used it to keep him occupied while Kelly took his blood samples.

 And he had a grand time motoring around in the examination room...

 while we waited for Dr. Chang.

 However, during his anti nausea meds and two doses of Chemo...

his ol' standby, the movie, Cars won out - big time.

Thanks to Pam and Stacey Hofman for tag teaming it

and watching Kean so I could go to a disability meeting all afternoon.

And to Liz Iverson who took Reese for a play date after school and then brought back

a bonus-- dinner tonight. 

After an exhausting day, that was so kind.

Delayed

Today started way too early.

But on the bright side, Kean didn't have any time to realize he was fasting.

We just got up, numbed him up, dressed him up and headed to the hospital.

My sweet friend Colleen Riggs (my girls adore her), came over to make

sure the girls got their teeth brushed, hair combed, shoes on... you know, all

that stuff so they don't look homeless going to school.

Here they are rocking out to Radio Disney while waiting for the bus.

Kami Reeve was our date for the day.

I think she and Kean must've secretly talked last night to color coordinate their clothing.

Between the two of us, we kept him pretty entertained (or snuggled up) while we

waited for his blood results.

 Once again, he did not make counts.

Today he came in at 620 and needs to be at 750.

At least we are headed in the right direction.

And honestly, after Reese kept us up for a good two hours in the night after

having a nightmare (about vampires of all things), I was kind of relieved to get to go home with

only a short stint at the hospital.

Kami got to hold onto fuzzball while they de-accessed his port.

Here's some great news.  The next phase of Chemo is not toxic on the hair (just the liver and kidneys).

And then we let the boy eat!

And guess who we ran into?  Our friends Amy and Audrey from the Twin Falls area.

Sweet Audrey is doing well but will be getting a boat load of Chemo today.

She is constantly in our prayers, along with our little guy.

We go in again on Thursday to try, try again.

What a way to spend Valentines, eh?

A Stroll in the Snow

We are getting a little bit stir crazy over here.

So even though the temps have been high enough to really start melting the snow yesterday and today...

the boy and I went out for a ride with his sled.

Suffice it to say, I got a good little work out - slogging him through the slush.

One of Kean's Down syndrome buddies from the days when he was in Tumble Time...

an adorable little girl by the name of Mirabel is very, very close

to walking.  Her mom, a fitness guru, started a facebook site to get people up

and moving to inspire Miss Mirabel.
So far, over 900 people from all over the world have joined her site... as we have.

Today's walk was for her.



Here's a link to the site.

https://www.facebook.com/events/477046175670405/479145278793828/?notif_t=plan_mall_activity

Our other big highlight of the day was

visiting Grandpa Bodily next door.

Kean is still healthy, hanging in there

and not quite as much of a pill as he was yesterday.

However, he did decide dinner was optional this evening.

Guess it always has to be something.

Curse You Facebook!

So much for sneaking through this birthday with nobody noticing.

Actually, as depressing as it is to inch closer and closer to such an old age,

the gazillion messages all of you sent were wonderful.

And I feel much better about life.

We kept it pretty quiet... going over to my parents' house for our regular dinner.

I forgot my trusty camera... so all these photos are from my phone.

And please notice... this is of the kids before all of the sugar.

 My 15 year old niece, Katie surprised me with a pan full of butterfly cupcakes.

 She got this really cool book on cupcakes for Christmas and these were

her first attempt.  I told her, I'm hiring her to make cupcakes for

all my kids birthday parties.  She's quite the artist.

 Then my dear friend Pam, showed up with a German Chocolate Cheesecake

from the Cheesecake Factory.

Repeat after me... Heaven.

 As if our girls were not sugared up enough at this point, we ran them

over to Ron and Elly Moomey's house.

The Moomey's have their grandchildren in town visiting from the Bay area.

Tonight, also happened to be their grandson Jack's 7th birthday

and they had invited the girls over for... yep, more cake and ice cream.

Hopefully it will all wear off as they sleep and by morning

they will be back to their normal loud and hyper selves.

Again, thank you for making me feel so loved.

I guess birthdays aren't all that bad.



Wish Granted

Christmas came early for Kean.

As you know his fondest desire (all day, every day) is to go riding--

whether it be on a motorcycle or on a tractor... he just wants to ride.



 One of Byron's good friends bought a brand spanking new tractor

with a heated cab, stereo-- the works.

He's parking it in our barn and has offered to let Kean take it for a spin

and another spin and another spin.

Can we say Boy H.E.A.V.E.N.?

 Holland has been running with the school's track team and

today participated in her first official run-- the YMCA's annual

Christmas Fun Run.

She loved it and even though I couldn't go watch her

take part, I love the fact Kean and I are home--

to welcome her home!

So far, so good.