Careful What You Wish For...

I know it's hard to see, but there are also yellow squares on the calendar that represent the days I work, and the blue are the days Randy works. What remains on the schedule as "open" days are four sad little days. Hmmmm this should be interesting. I'm going to need a friend.

Other than the days I work, I am normally home with Randy and Lacy. I am realizing that I will only see my husband 4 times next month. I hope he remembers what I look like.

Fashionable?

Walking into our living room this evening to find Lacy in the corner talking to herself is nothing unusual. What left me cracking up was watching her straighten her dress, smooth out the ruffles, and then lick her hand and smooth down her hair. (Seriously, where does she learn this???) And then she turned to me and asked, "Mom, am I fashionable? Am I ready for my tea party?"

P.S. There is no tea party. I'm not going to be the one to tell her!

Ugly Clips

The ugly clips are back... with a vengeance. She told me that now she looks like a "girlie girl". Ironically, my little "girlie girl" flipped me the bird today. Of course she didn't' know what she was doing (I think... Aunt Larci?!?). I asked her for a finger so I could check her blood oxygen levels, she turned around and gave me THE finger. Such a delicate little flower. Today she spent most of the day off her vent and part of the day off the vent and off extra oxygen. Looks like we are headed in the right direction. It's a great feeling to be moving past this time. Thanks for all of the prayers we received the last 16 days!

Happy Father's Day!!!!!!

This is my dad.

He is the best dad a girl could ever have!
“My father gave me the greatest gift anyone could give another person, he believed in me.”

-Jim Valvano

She must be getting better...

While still on her vent 24/7 and still needing oxygen, she is showing some signs of improvement. Today's conversation for example:

While standing in the bathroom, Lacy was yelling at one of her imaginary friends...

Lacy, "You idiot! What are you doing?"

Me: "Lacy, we don't use the term idiot in this house, please choose another word to use. I know that you are smart enough to find a better word!"

Lacy: "Mom, sometimes you just have to use the word idiot!"

I didn't know what to say to that. How pathetic is it that my 3 yr old can leave me without a comeback?!?

Day Eleven...

Back on the vent. We managed to get off yesterday, but today we are back on. Eleven days. Eleven long days. Seriously what next? Frogs? Boils? Locusts? Set my Lacy free!

Eight Days

And no change. Lacy is still on her vent 24/7. Still needs oxygen, still stuck in the livingroom, still has a fever. EIGHT DAYS!!!!!!!!!!!!!! ARRRRRGHHGHGHGHGH!!! That's how I feel today!

Quick Pic

I had to grab my cell phone and get a shot of this.... I managed to convince Lacy to hang out with Randy for a while "Boy, daddy really is the best snuggle bear out there... sure wish daddy was here with us". Lacy took the bait and insisted Randy be her new best friend. Evidently Tink (Randy's cat) was just as pleased; she climbed right into his arms. Poor Randy I love how he is surrounded by all of Lacy's pink stuff! Too cute! We even managed a smile out of Lacy today!

Holding Pattern

We are still very sick, and I am considering getting sterilized. This kid thing is hard. Okay I am not fully considering it, but we are totally overwhelmed. Lacy is insistent that I maintain in physical contact with her at all times. She is reverting to her old behaviors where she refuses to do much, and we are expected to tend to her at all times. If we refuse she starts to throw a fit. We are giving her a tremendous amount of grace because we just don't know if it's because she is sick or just a pain in the ass.

Imagine putting your kid on a three foot leash and tying it to the middle of your living room. That has been our life for five days now. She is just stuck to her vent, and can't go anywhere. I can only wonder what kind of psychological ramifications that is having on her.

Hopefully this too shall pass.

Sickness

We are in the middle (hopefully closer to the end) of an illness. Lacy is sick. Not your normal run-of-the-mill sickness, no, CCHS kids are different. A whole different breed really, and the ramifications of having a CCHS kiddo are really hitting me hard. (For the record, I wouldn't change it one bit!)

Last weekend we were having trouble maintaining Lacy's blood oxygen saturation. (We call it her "sats"). What should normally be 97-100, we were struggling to maintain in the high 80's to low 90's. For the record, this is not good. Since Lacy wasn't showing any physical signs of illness, we figured it was her vent (we changed her circuits three times) or maybe her pulse ox machine wasn't working right (the thing used to monitor her sats at night), possibly it was her trach... maybe it was too small, I mean she has grown soooo much and hasn't gotten a bigger trach. Randy and I were frustrated, and not sure how to fix the problem. By the second night, I remembered something I heard a doctor once tell me, "always try to keep a trached patient on room air if possible, because an increased need for oxygen is always a precursor to something going wrong. They are going to get real sick real soon."

Later that night (3 am to be exact) Lacy was vomiting and had a temp of 103, and her heart rate had gone very high, then dropped low (REALLY bad sign). She was officially sick. After we cleaned her up, we added oxygen to her vent, gave her some Tylenol, and moved the whole operation to the living room so I could stay with her and watch her vital signs. The set-up we have is no joke. I have seen cancer patients on hospice with one-fourth of the equipment Lacy needs.

The next morning (yesterday) I called and got an appointment with a doctor to check her out. I really wanted to do this on my own (Randy still at work). Okay, I really didn't want to, but I felt like a jerk asking people to drive two hours round-trip just to help me load and unload stuff. (Although my sister and Sabrina both insisted they could be there at the drop of a hat!) I knew it would be difficult, but I figured I could manage. Soooo around 9 am I packed up Lacy's vent, pulse ox machine, suction, both of her 10 lb folders full of her medical information, an oxygen tank, little stand for said oxygen tank, drinks, snacks, DVD player, headphones, her backpack full of supplies and Lacy! I managed to get it all in the car in under twenty minutes. I was sweaty, but accomplishing my goal! By 9:30 we were on our way to the doctor's office. At 9:35 Lacy started barfing all over herself and the equipment. Damn. (Now, mind you, she didn't stop singing or chatting. She just barfed and went back to her usual old self...CCHS kids). We pulled up to the offices and I started the million-dollar operation of extracting all of the equipment and getting it onto Lacy's stroller. As I climbed out of the car, I knocked my purse onto the ground and everything fell out and started to roll away. I took a deep breath and continued working. I managed to pull out the stroller, and pack it full. Only dropping things here and there. As I helped Lacy out of the car, she knocked over a cup of orange juice I had given her and the top fell off, spilling OJ on me, her, the stroller. I started to cry a little, but reminded myself to "suck it up". Really, the OJ wasn't an issue, because Lacy started barfing again. Everywhere. But by now I am a hardened mother of a three-year-old. I just dabbed a paper towel on it and kept moving. I started pushing the stroller through the parking lot, only to notice that the weight of everything was causing the frame to bow and the tires to move in a funny direction. Damn! I had to take some of the weight off, so I started packing the equipment onto myself. I was attempting to push a stroller, carry five heavy bags on my body and pull an oxygen tank. That's when I officially started to cry. By the time I arrived at the office door I had managed to pull myself together again. Unfortunately, the door did not have handicap access, and I couldn't quite get it to stay open long enough to get my entire caravan through the door. I looked over at a nurse (taking her break) sitting nearby. She ignored me. "Stupid bitch" I muttered. "Stupid Bitch" Lacy repeated. A sense of failure overcame me. I squeezed through the doorway while telling Lacy that, "mommy was terribly inappropriate back there, and we are never to use that word again". Upon arrival (ten minutes late) for our appointment, there was not a single place to sit down. I wanted to make a scene. Start screaming at people because my kid was "effing handicapped". But I didn't. Guess I am growing up a little. After a few minutes a seat opened up and I found a place to sit. And Lacy needed to go potty... it just continued on like this for three and a half hours (that was our total stay). Of course the doctor we had was fresh out of school and knew nothing about Lacy or her condition, and treated her like any other kid, then sent us home. I was pissed, but didn't know what else to do at the time. Besides, I just wanted to get home.

Lacy has only gotten worse.

Today I finally called in the "big dog" at Loma Linda and he, as always, was awesome. I told him what was going on, and he gave us instructions on what to do. I feel a little bit better. But it is still scary.

The thing is, kids with CCHS don't show any signs that they are ill. Lacy wants to play and run and sing, and if we let her off of the oxygen, her sats drop dangerously low. From just looking at her, you would never know that she had ANY problems, at least not until she just dropped dead. I can not express how emotionally exhausting this is. I am so thankful that both Randy and I are trained respiratory therapists, because this would be impossible to manage alone. Tonight I had Lacy sitting on my lap and I said to Randy, "she stinks. She smells like an ICU patient." I decided that we would take her off of her oxygen long enough to get a bath. Of course her sats dropped dangerously low and her heart dropped too (Lacy was having a blast in the tub splashing and singing and telling us stories). We called off the bath and put her back on her vent. I knew that CCHS kids present a false sense of health, and they can go bad very quickly, but I had yet to experience it. We are living it.

Keep us in your prayers. This is really scary.

If Lacy doesn't want it...

Tinkerbell will sit like a perfect lady and eat it right off of the plate. Love that fried chicken!

Sabron the Horse

As we continue our lives with Lacy, every new day brings another set of imaginary friends. Our most current housemate is Sabron. He is a horse that Lacy carries around in her pocket (but he can also be the size of a standard horse). While at Disneyland today, Lacy found the carousel and rode "Sabron"! Sometimes he is brown, sometimes black, sometimes he has black and brown spots. Today he was a beautiful white horse. What generally remains the same is that Sabron lives with, "a bunch of creeps". (per Lacy). Often, the tale involves Sabron running away from the creeps, or saving Lacy from the creeps. He does not, however, fly. "He is just too big and his wings can't get him off of the ground. That's why he has to run."

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Ladies and Gentlemen, I give you.... Sabron the Horse.

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Another imaginary family member is Hayla. She is either in the doorknob to Lacy's room or she is the doorknob. We aren't sure. But Hayla has been with us for a while, and she often gets pretty bows tied around her. "cause Hayla likes to be beautiful". Um, don't all doorknobs?

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Yesterday she was "building" a robot. "He looks at lungs, mom. He is a pull-muh-nall-a-gist." (I will give her a free pass on this one, most kids don't have a pulmonologist nor would they know what they actually do.)

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Lacy never leaves home without her owl. The owl doesn't have a name, just owl. Why you ask? "Because he is too young to talk, so he can't tell me his name yet" Of course! How could we be so naive!? The lesser acknowledged, and occasional characters in our house are an assortment of baby animals. We have baby giraffe, baby lion, baby kangaroo. But they don't really do much.

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Randy has taken advantage of this situation, and takes the imaginary friends away from Lacy when she misbehaves. He "picks" the animal up, opens the front door, and tosses them outside. If Lacy is willing to calm herself down and apologize, he will allow them back into the house. But we both know she is getting smarter and may not buy into our program much longer. Most likely she will create an imaginary door that they walk back through.

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I am just assuming that this is what all three-year-olds do? Yes?

Please tell me yes!

Just Maybe...

There is a slight possibility that we may have taken Lacy to Disneyland one too many times.

Yesterday, while we were out running errands, Lacy managed to score a balloon. (Nothing unusual there, random people are always trying to give Lacy stuff, we are used to it.) As we were walking through Target, Lacy decides she needs to use the restroom. We (me, Lacy and the balloon) all walk to the nearest bathroom. Before we can go through the bathroom door, Lacy forces us all to stop and "measure the balloon". According to Lacy, we needed to, "make sure he is tall enough to go on the ride".

Lacy grabs her balloon by the string, and pushed it up against the wall next to the restroom door. While holding the balloon on the wall, she placed her hand above the top of the balloon, thereby measuring the relative height of said balloon.

Lacy: "Nope, not tall enough. Maybe next time, balloon."

Sometimes.

Sometimes life just goes in a direction nobody intended. Last night Stephen Curtis Chapman's adopted daughter, Maria Sue, was accidentally ran over and killed by her older brother while backing out of the driveway. I can not imagine how I would deal with this, my heart goes out to them.

Fox News.com

The Mustache

This afternoon Lacy was playing with her aunt Larci. One of the things Lacy loves to do is make up songs about people. She currently has about three "Larci" songs in her repertoire. Today she brought back one of her oldies, but added a very funny twist.

For those of you who have never met the infamous aunt Larci, she has impeccable taste and sense of style. Her hair is always perfect, make up is always fresh, and she is dressed to the nines. So, of course, this made Lacy's song all the funnier...

"I love my aunt Larci,
she is my best friend,
she makes me happy
and she's beauuuuutiful...
and has a mustache!!!"

I laughed so hard I almost peed on myself... but that is an entirely separate blog entry.

(and no, she does not have a mustache... cause I am sure she went straight to the salon to get it waxed off!!! I kid, I kid.)