What's the deal with Lacy???

We have a doctor's appointment this morning. Hopefully we will be able to get back some lab work to better understand what is going on with Lacy!

Our suspicion is that she most likely has a viral infection that is slowly turning to bacterial.

This is all actually pretty normal stuff for kids. If you have a kiddo without the genetic problems, you would have a snot covered whiny kid with a mild fever. You would increase the fluids and wait for it to pass.

We are not offered that option. We need oxygen and even more ventilatory support for our kid.

You know when you have a nasty chest cold and you have to work a little harder to breathe because there is so much junk in your chest? You would say something like "I feel like and elephant is sitting on my chest." Well, since your brain is wired correctly you'll automatically begin to work a little harder to keep everything where it should be.

Lacy does none of this. She doesn't increase her need to breathe. In fact, she just lets it overcome her without a single complaint. In our case her oxygen saturation was suddenly 77!! For those of you NOT in the medical field, this is BAD. Lack of oxygen to the brain = brain damage.

If your O2 saturation was 77 you would definitely know something was wrong. Your lips and fingertips would be blue/grey. Your heart would be POUNDING. Your lungs would be working DOUBLE or even TRIPLE time to get enough oxygen to your brain.

Once again, Lacy just sits there and sings a song and watches TV. Her brain doesn't even register to her that there is a problem.

That, in a nutshell, is CCHS.

More O's.

Lacy needs oxygen right now. We have a delivery of FIFTEEN tanks scheduled for tomorrow. Right now we have one and a half. The million dollar question right now is... can we maintain Lacy on the tiny bit of oxygen that we have? This delivery is CRUCIAL. Without O2 we will be forced to pick everything up and move to the local neighborhood ER simply to use their oxygen. Ya know... to keep our four year old alive and free of any major brain damage!

Let's all pray that the oxygen delivery is EARLY if not prompt!

Oh! Chicken Feathers!

"Oh! Chicken Feathers!" is Lacy's version of an expletive around this house. Never fails to crack me up when she says it. Unfortunately, that's how we are feeling right now.

Lacy is sick. Three little words that can bring our world to a screeching halt.

The unfortunate thing about having a little diagnosis like Congenital Central Hypoventilation Syndrome is that when she gets sick it's HUGE.

Early this morning around 1am I was alerted to a problem with her heart rate. What is normally 80 during rest was suddenly double that, and her alarms were sounding! In addition, she is not able to keep her oxygen levels consistent. When I put my hand on her she was literally on fire from head to toe. Poor thing. We've done this before.

With Randy at work tonight and no nursing, it's just little 'ol me left to deal with the situation.

Tylenol has been administered. Breathing treatments have been given. Oxygen is now in use. I am attempting to sleep on her bedroom floor while listening to whimpers about how she "feels like crap". Yes, she was asked to find a better word than crap... but I was snickering as I recalled the following lines from Christmas Vacation:

Ruby Sue: Rocky bit my thumb. Him's nervous because Christmas is almost here.
Clark: Nervous or excited?
Ruby Sue: Shittin' bricks.
Clark: You shouldn't use that word.
Ruby Sue: Sorry. Shittin' rocks

I guess Lacy is our little Ruby Sue! :)

Well, for now her heart rate is a little better, and with the oxygen being added into her vent she is holding her saturation. I suspect tomorrow will be a brutal day for us. I doubt she will be coming off her vent. As always, our goal is to keep her out of the hospital.

I will keep you all up to date. Prayers are appreciated.

A Non-Lacy Post

This guy cracks me up. If you've ever gone to church more than just Easter and Christmas, I'm sure you will agree with me. Heck, even if you haven't you might still. His blog is Stuff Christians Like and it cracks me up! Enjoy!

Lacy Won!

Grampy Hat Day 2

Still wearin' the Grampy hat! She called my mom this evening and asked her if Grampy could come over and play with her! Too funny!

Grampy Hats and Jacked Up Hair

This evening Lacy and I went out to my parent's house for dinner. Lacy had been asking for her Grammy and Grampy the past few days and let's be honest here, Lacy really needed some home cooked food!

Lacy played with her grandparents and managed to get herself a very fashionable Grampy Hat! I suspect it will be on her head for a month.

On the way home I stopped at Starbucks so I could take my sweet husband a little coffee while he worked tonight. Of course Lacy wanted some too. Upon delivery of her vanilla steamer, she said to me, "This is both delectable and delicious. Do you know what those words mean mom?"

"Um... yeah, Lacy". I was appalled! First, she was checking my vocabulary skills, and secondly, was she insinuating that I was not at her level intellectually! What the hell???

When the vocab test was over and after we delivered daddy his venti peppermint mocha, we headed home. With her Grampy hat still on, Lacy quietly fell asleep. As we pulled into our neighborhood she started to wake up and from the back seat I heard...

"AWWWW, MAAAAN! My hair is all jacked up!"

I about choked on my Starbucks! It took every ounce of strength I had to not utter a single sound. I could NOT let her hear me cracking up. Unfortunately, my silence was too much for her and she started yelling at me...

"DID YOU HEAR ME?!? I SAID MY. HAIR. IS. ALL. JACKED. UP!!!"

"Yes, Lacy. I hear you. I am sorry your hair is all jacked up, but that happens sometimes when you fall asleep with your hat on."

"Well, this sucks!"

I decided it was simply too late in the night to point out that little girls should neither use the term "jacked up" nor "sucks". I'll deal with that mess in the morning.

And by the way... the hat is still on! Probably to cover that jacked up hair!

What A Cliche

Tonight I took Lacy to Panda Express to get her some Chinese food for dinner.

I convinced her to try something other than her usual Beef and Broccoli.

After a quick taste and approval of the new item, she announced...

"Well you know what they say mom... variety IS the spice of life!"

Go Go Lacy.

For those of you who like to plant and grow your own kids, this blog isn't gonna be very impressive to you. However, if you've ever had anything to do with institutionalized kids, I hope you will be as thrilled as we are with the following pictures...

Over in a corner of Disneyland (Tomorrowland to be exact) is one of the places we like to eat dinner. In the outside dining area you will find these blue support beams. While we were eating, Lacy strolled over to check it all out. Slowly she started to climb on the beam. Now as a parent I find it intolerable when kids are allowed to climb all over things in public places, but in this instance there wasn't really anyone else around us and we were absolutely thrilled to watch Lacy attempt to climb up something.

She managed to pull herself up the small step and climb up onto the ledge to peek through the hole. We were really happy to see her accomplish this on her own. Remember, this is a kid that couldn't go up and down stairs a year ago!

Much to our amusement, Lacy continued to climb even higher! She managed to find her way to the second hole. Randy and I were absolutely amazed. Lacy finally seems to be catching up with her age group!

But she didn't stop there! Up up up she went...

'Till Daddy had to come rescue her.

Money Maker?

While helping Lacy with her seat belt today I unknowingly brushed the belt against the side of her face. Her response?

"Hey! Mom! Watch out for the money maker, huh?"

The Sign

Today Lacy and I went shopping for a new calendar. While we looked around, I also found a few cute signs that I considered buying. One of them said...

"My Prince Charming Already Came... His Name Is Daddy!"

I thought it was perfect for Lacy. While I considered purchasing it vs. making it myself, Lacy asked me to tell her what is said. After I read it to her, she quickly picked up another one and said, "I'm getting this one for daddy!" I asked her to read to me what it said (it said "All Star") and she said, "My Princess Already Came... Her Name Is Lacy!"

Mail From Heaven

Like many people in this country, we have newspapers that are delivered to our driveway in the morning. Not long ago Lacy happened to notice this phenomenon and announced that mail had fallen from the sky. So now every time she gets in or out of the car, she checks for mail from heaven.

This morning we decided to walk down and get the mail from our mailbox. As we returned back towards the house Lacy proudly announced, "Uh Oh, looks like more mail from the sky." and then proceeded to look up to the sky and yell, "THANKS GOD FOR THE MAIL! AND GOD... WE HAVE A MAILBOX THAT IS RIGHT DOWN THERE... JUST SO YOU KNOW."

Lacy and Grampy

I swiped a few pictures of Lacy from my sister... thanks Becks.

Here is Lacy at my parent's house. She is crazy about all of her Grandparents.

One of her biggest fans is my dad, Grampy. She simply adores him... and all of the chocolate he has in his pockets!

The Archiver

Fourteen years ago my life crossed paths with this guy. I'm lucky enough to still hear from him from time to tome. His talent is undeniable, always has been. It's only a matter of time... Thought I'd pass along his first video!


The Archiver - Lost It All (Official Video)

More TVs?

me: "Lacy it's time for your nap, turn off the TV and head upstairs."

L: "AWWWW... mom, I'm watching somethin' "

me: "you are done. GO. UP. STAIRS. PLEASE."

L: on her way up the stairs "You know what I really need mom? I need a TV in my room so I can watch TV!"

me: "yeah, that's a nice thought you have there, Lace" ...um, not on your life!

L: getting pretty excited at the possibility "And also, I'm going to need one in my bathroom too. So I can watch TV when I'm in there!"

Maybe we could just attach one to her head?