The dog and cat

I love cats.

My kids think I don't.

It all started with redneck-type jokes about having roadkill for stir-fry.

Now, when I hear of a dead cat, I talk of stir-fry...jokingly, of course.

So, my children think I hate cats.

Here's our soft, lovely Izzy.

Anthony loves both Penny (dog) and Izzy (cat).

I had video of him throwing the ball for Penny.

It takes WAY too long to load though. Penny is so good around Anthony, and is super careful by him.

Daniel saved his money for AN ENTIRE YEAR for the Nintendo 3DS.

The 3DS was released yesterday, so Daniel bought one today.

Andy and I kept teasing him, saying that we better go home and nap instead of going to the store to get it.

Daniel was ecstatic to finally have it in his hands.

He had it out of the package within seconds of buying it, and was programming it with today's date and the time. :)

The many expressions of Anthony in a one-minute period of time...

We ran out of hand soap!

So, I finally got in to Bath and Body Works today and bought some more.

The 12 bottles I bought are probably a 4 month supply.

I love their yummy scents and the moisturizing quality of them.

With the amount of hand washing we have to do, it's good to have both those qualities.

Kelly loves to use BBW body mist scents. They smell so good! *no, there was no compensation for these comments by anyone or any company*

Freedom!

While Anthony was in the hospital, his immunity counts were so close to zero, he wasn't allowed to leave his room.

Once those counts came up, we went for a walk with the plastic raincover "bubble."

I loved getting fresh air, and so did he, but he loved his doritos even more.

Finally, after 7 1/2 days in the hospital, Anthony got discharged and we came home!

On the way, he loved watching Toy Story 3 with his personal DVD player. The children enjoy having him home. We have oxygen for Anthony for when he's sleeping. He'll use oxygen for at least a couple weeks. Chemo will resume when Anthony's counts recover to at least 1,000. The children had fun on Friday, doing their hair crazy.

Maggie was headbanging with hers.

Then she styled it.

Kelly did her nails. They look better in person, the camera was acting up that night.

Daniel had hair like Edward in Twilight, but he wouldn't let me take a picture (Sorry Aunt Yahnira!).

He's camouflaged under the blanket.

Kelly with her mirror-made school spirit.

Courtney and Lilly had fun chalking the walk.

Today, Josh, Lilly, and Maggie did some of Josh's Mega Science Lab.

First was the volcano.

Josh and Lilly made it, Maggie's holding it.

Anthony loves waking up and having Kelly hold him.

Check out his dark peach fuzz. :)

Volcano time.

Lilly added vinegar.

Josh added food coloring.

Maggie added baking soda.

Then, it was pinata time.

(Anthony was having fun trying to get the old tv to turn on, and talking to it)

This is pinata time when ice cream is mentioned.

Penny (dog) is jealous because she can't go past the baby gate.

3-21

Today is World Down Syndrome Day! 3-21 represents a third copy of the 21st chromosome {Trisomy 21} or more commonly known as Down syndrome.

Our little Anthony has this extra bit of goodness.

While other families may go into some complicated definitions and explanations of Down syndrome, statistics, and otherwise, I will celebrate the day by explaining what Down syndrome has meant for our family.

As I write this, I am sitting in a regional, specialized children's hospital with Anthony.

We've been here for 6 days so far, and have no idea when we'll get out.

Because he has Down syndrome, Anthony had a high chance of having a congenital heart defect at birth.

He underwent successful open-heart surgery at 3 months old to repair that defect.

Anthony also had a higher chance of developing leukemia because he has Down syndrome.

We thought nothing of that chance because we figured he'd already gone through more than his fair share of medical issues with his heart.

12 months after his heart surgery, Anthony was diagnosed with Acute Lymphoblastic Leukemia.

Half our family spent 14 months in Seattle while Anthony underwent intensive chemotherapy treatments. Six weeks ago, we finally became a whole family again, with Anthony being allowed to return home.

Time together as a family was so wonderful again.

Anthony was enjoying everyone else, they were enjoying him, and I was enjoying being domestic again (instead of just worrying about which chemo drug when, or what side effects to deal with.

Last week, Anthony's cold developed into pneumonia.

He was ambulanced 3 hours to the regional children's hospital.

He has RSV, paraflu, and pneumonia.

Another risk for children with Down syndrome is the fact that their airways are typically a lot smaller and "floppier" than children without Down syndrome.

Smaller airways mean Anthony cannot excrete his secretions (get rid of the crud in his lungs and elsewhere).

The second he falls asleep, Anthony NEEDS OXYGEN.

We will not be discharged until he no longer needs oxygen at night.

Anthony has severe to profound hearing loss in one of his ears.

That's better than the total deafness we thought he had at birth.

He had failed 2 newborn hearing tests.

Before leukemia, Anthony had moderate hearing loss in one ear, which was remedied with a hearing aid.

Chemotherapy is audiotoxic (hurts the ears). Thus, the profund hearing loss in that ear now.

Since birth, we have had Anthony in therapy~~

speech, occupational, physical.

All helped him to develop as well as he has.

Anthony crawled at a young age, especially for having Down syndrome.

This is because he loves to swim, and we took him to our local pool every day during his first summer.

During leukemia treatments, Anthony still attended therapy, which enabled him to maintain his abilities. That is a feat in and of itself, with the toxicity of chemotherapy.

This is how our lives are painted with Anthony's Down syndrome.

It's not just a medical nightmare though.

Anthony is a literal ray of sunshine sent from heaven.

He LOVES everyone he meets and charms them all.

He has spunk.
He is ever cheerful.

Anthony is one of the best "things" to ever happen to our family and our community.

Anthony brings others together with one main purpose.

Anthony truly is our special little boy.

We're so happy that he was sent to be in our family.

We love you Anthony!

Visit from Santa (in March!)

Anthony has been so tired of being stuck in a crib and connected to tubes and wires.

His favorite thing today is trying to pull his port access (needle covered with plastic butterfly) out!

He has also been trying to yank the oximeter cord enough to make the monitor go flying across the room.

Thankfully, he hasn't succeeded yet with that...

Finally though, Anthony got to be disconnected from wires and tubes for a couple hours.

FREEDOM!!!

He crawled around the whole room, tried to climb into cupboards, then tried to stick a finger in the ultra-powerful outlets.

*sigh*

Here he is under the portable bathtub.

Isn't the clear blue tub so pretty?!

We needed new bedding for Anthony, so I asked the nurse.

She brought in a fresh sheet and 2 baby blankets that someone made and donated.

The blanket below, plus a similar one but with fishies on it. Anthony loves this kind, with the fringe. :)

Bathtime.

See all the stuff we have to cover the port with.

We have to be so careful not to get his port wet.

Water can help bacteria grow and breed, and that is too dangerous by the central line.

Santa came and brought a couple goodies for Anthony.

The two bears.
The smaller bear represents us and the large bear represents God.
This is to remind us that God is always with us.

Anthony also loves the little piano!

Anthony is still having a hard time getting enough oxygen when sleeping.

His ANC (immunity count) is down again, to 32 (healthy people have it in the thousands).

So, we're still at Seattle and will probably need to stay until at least Monday.

RSV and paraflu

Anthony has both.
He can get both many times.
Both cause respiratory distress.
Anthony still needs oxygen at night.
We'll need to be in Seattle for a few more days, at least.

Ronald McDonald House is full.
The hospital case worker will come explain our housing options later today.

So sick

What is the true cost of the simple, common cold? Is it just the price of a box of Kleenex, some cough drops, and vitamin C? Does it include a day or two of work missed?

The cost of the common cold for my immuno-compromised child is much higher than this.

Anthony and I contracted a cough/cold over 2 weeks ago. Day 2 involved going to the ER for fever to have blood cultures drawn. When a patient has a port that leads nearly directly to the heart, any sign of infection must be investigated immediately.

During the rest of that week, numerous therapy appointments were cancelled because he was feeling so crummy. Finallly, Anthony started feeling better for a day or two. Then, Anthony’s symptoms grew and became worse.

Another trip to the ER, blood cultures drawn, lab work done, and an x-ray later, Anthony is diagnosed with PNEUMONIA. He had to be sent by ambulance to Seattle for care at the region’s specialized children’s hospital.

So, here’s the breakdown of the cost of the common, simple cold for our family.
*Anthony develops a life-threatening illness
*therapists (at least 3) lose a session of their schedule (canceled appt. means no payment to them)
*Probable visit(s) to the ER
*possible ambulance transport for nearly 3 hours
*admission to specialized hospital (about $8,000/day for the insurance)
*cafeteria food and vending machine costs (could easily be $30 per day)
*gas for Andy to come visit (at least $60-100 round trip)
*calling card costs ($10-20 per hospital admission)
*cell phone re-charge ($20, we pre-pay by the minute)
*convenience foods for family at home
*travel food ($15 per trip)
*our children lose a parent (sometimes both) for a time
*My time is spent coordinating schedules
*Isolation in the hospital room (can’t leave our room because we can’t spread the virus or infection)
*family strain
*Again, Anthony develops an illness that is life-threatening
*our friend now has RSV (like a cold for most, but extremely dangerous for those who are immuno-compromised), and her LIFE-SAVING bone marrow transplant must be postponed until the complicated treatments get rid of the illness. Her transplant has been postponed for over a month now, which means she will likely need more intensive chemo again before, which she would not have otherwise needed.
*Anthony’s chemo has to be stopped until his body can recover its illness-fighting immunity---does that put him at more risk for relapse?!

My baby needs oxygen tonight because he has a cold that developed into pneumonia. His already worn-out body is struggling to survive.

Please think twice or even five times before you touch my baby, before you come near us* if you have even a small tickle in your throat. If you have any symptom at all, even a tiny cough left over from a cough you had weeks ago, please wait to show your love in person. I know Anthony is a seriously special boy. He loves everyone, and everyone loves him.

I just don’t want him loved to death.

*no offense intended, I’d rather just reschedule visiting with you than risk his life.

Another update

Here's a not very good picture of right before we left for Seattle last night.

Anthony really wasn't upset.

He loved his EMT ladies. ;)

Oh, and he loved watching Toy Story 3 for the 3rd time of the day in the ambulance on the way.

Anthony is getting into even more mischief.

He tries to yank his IV tube out and to reprogram the pump machines (measure fluids and medicines going in).

Anthony doesn't need the oxygen when he's awake now.

His oxygen saturation goes down when asleep though, so he needs blow-by oxygen then.

Last week, the children had eye checks.

Their eyes needed to be dilated and they came home with creepy eyes.

They walked in the door singing "three blind mice!"

Daniel's dilated eye the next day.
(His and Maggie's appointment's were on a different day.

Anthony has been climbing up, in, around, and getting into so many things at home.

Josh, Lilly, and Maggie like to get all the cushions set out like this, and let him play.

Josh finally got a haircut the other day.

It was long overdue.

I forgot to get an after picture though...