Friday, July 31, 2009

Lung Biopsy Results are In!

I know some of you are itching to know what Little Guy's lung biopsy results were. I'm pleased to say they were positive and definitive. That's the best thing ever! No more guessing or wondering. There are more happy details right here!

Wednesday, July 29, 2009

Just Thank You.

I've been wanting to blog this for a couple of days now, and keep thinking I'd get a picture to go with it. That would require me to get TWO kids to sit still, smile at the camera, and actually leave each other alone for a good ten seconds. Around here, that's a lot to ask. So, the picture will have to come later. It'll be a good one, too. I promise. Besides, the picture won't be nearly as fun as the story anyway.

The other day, I had finally gotten all the kids out of my hair. Number One was at a friend's house, Pretty and the Beast were playing with Miss P. down the street, and the babies were napping. The kids had all been fairly horrific that day, and I think I may have been sitting there feeling a little bit sorry for myself. I don't even really remember what they'd done that was so naughty, but I know they did it. Honestly, I could probably just make something up and it'd be true.

Anyway, Marlene called me and said she was coming by "just because". Something smelled a little fishy about that, but I said okay. Angela had been by earlier that morning and seen the total chaos and withnessed my head exploding when I saw that the Beast had cut up about ten really good books (that part I DO remember). I figured Angela had just told Marlene that she'd have to come by if the children were going to survive the day. About five minutes after her call, in she strolled with a grin like the Cheshire cat. She didn't speak a word for the first little while, but just kept unloading her trunk with bags and bags of stuff.

Upon further inspection, I found that these bags were filled with each and every item off Number One and the Beast's school shopping list. Every single thing they'd need this year was there. And there was more. Each boy had a brand new backpack and lunchbox (the Beast has been sleeping with his ever since and carries a spoon in the lunch box "just in case someone wants to feed me something").

I was stunned. I'd even go so far as to say I was speechless. (I know. Shocking for me, right?) I asked time and time again and in many different ways who had done this for us, and she refused to tell me. All she'd say was "someone who loves you and your family thought this would help".

Help? Help? It is so much more than helping. It was what I needed that particular day. It was just the little reminder I needed to know that I am loved by a Father in Heaven who uses other people just like me to do His bidding. Someone knew that my boys needed those supplies. We had already gotten a good start on getting them, but still had so far to go, especially the back packs and lunch boxes. Whoever that person was also must know how hard it is for me to get out with all the kids and do the shopping. With an oxygen tank in tow, it's just not as simple as all that anymore. Plus, the money we don't have to spend on supplies can now go to getting the Beast the couple of pairs of pants and the desperately needed sneakers he'll require for school to start. To call it a blessing would be an understatement.

We wrote a thank you note right then and there. The Beast signed his own name and put a question mark on the front since we couldn't address it to anyone in particular. I'm sure Marlene will get it to where it needs to go. That said, if you're the one who did this and you happen to read this blog, please know what a special gift you gave to us and those boys. They were both so delighted to know that someone thought of THEM this time. It wasn't just Little Guy or Pretty or Snort. It was the big boys. And they were delighted. And I was touched. And I don't know what to say.

Just. Thank you.

Sunday, July 26, 2009

Happy Birthday, Pretty!

I can't believe she's already three! But look what fun we had at her pretty pink impromptu party!
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Trying to be like Mommy

When things get quiet around here, I take a deep cleansing breath and just enjoy it. Then I come to remember what that usually means. Trouble. Big trouble. On this day (like many others), Pretty decided that she needed to look more like me. What that translates into is that she got into my make-up. Again. Is this REALLY what she thinks I look like? Perhaps I should invest in a make-up consultant and soon.

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The Beast and Pretty Got My Camera

This happens about once a week. For some reason, I'm always surprised to learn that I'm out of camera memory. This is just about 1% of what they took with my camera. I'll spare you the agony of the videos.

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The Great Scentsy Debaccle of 2009

The Beast plus Scentsy alone in a room. I don't think much more needs to be said about this. Do you? Really?
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Busy, Busy, Busy

Who knew being the mother of five practically perfect in every way children could keep a person so busy? I know. Shocking. And, oh so shameful that I haven't had a chance to update my beloved blog in so long. Never fear, my faithful readers, (okay, so I know it's pretty much just me, but humor me). I am still here and am making a promise here and now never to neglect my blog again. Today's post won't include photos, but rest assured that they're coming.

Pretty Turned THREE
I don't even know how it's possible that she's gotten so big. But, according to the calendar, it's true. She's three now. We weren't going to tell her it was her birthday since her party isn't until next month, (she's sharing it with one of her favorite friends. Yes, we're cheap. No, we don't care how cheap we are.) but she found out. And she was so adorably excited to learn that it was her birthday. She ran around singing "Happly Buhday to meeeeeee" and explained that she wanted a pink cake and pink drinks and pink plates. Not a horrible order, right?

How do you say know to someone so cute with a request as simple as that one? You don't. Our friend, Samantha, made her a lovely barbie cake with a pink dress lovingly decorated with help from her mom and another friend (thanks, Reece!). I got some cheap pink plates, pink napkins, pink gift bags, pink princess presents, and pulled out the presents we'd been saving for her. We called one or two neighbor friends and Voila! Instant pink party. Not too shabby.

I Got a Handicapped Parking Pass
I have to thank everyone for the prayers and outpouring of love as we worked with Little Guy and his health issues. It was a scary time for us, but the love we felt made it completely bearable. He's home now with oxygen at all times. At home it's fairly easy. Well, mostly. The cat likes to chase his tubing. Figures. Going out, though, is another story. Dragging the oxygen, Little Guy, the other kids, the diaper bag, and the kitchen sink (okay, so I leave that at home, but it feels like I drag it, too) is a lot of work. The tank is usually the big one that I have to take depending on how long we're gone. And, when he starts walking, going too far will leave him fairly winded. So, I got a handicapped licence plate. I only use the privileges when Little Guy is actually with me, but I will say it's helped quite a bit.

A Funny From the Beast
So, the Beast is apparently actually learning something at church. And here I thought he just went to drive his teachers nuts. Nope. He's gaining knowledge. He loves to put things inside of bags, and I don't tend to pay attention to what junk he's putting in there. Well, that's not totally true. If a butcher knife, matches, or a little brother turns up missing, I'll check the Beast's bag. He took his bag to daycare with him one day and I'm told held an entire Sunday school lesson using the Book of Mormon he'd taken with him. From what I'm told, he made everyone come sit in a circle and listen to him. Silly kid. Think Ms. Buffy will convert? Ummm, doubtful, but good effort, Beast.

Yesterday, we had the following funny happen with him after I saw Marlene coming up the walk:
Me: Pretty, go see who's at the door!
Pretty: Okay, who is it?
Beast: (fully expecting me to answer in the affirmative) Is it Jesus?!?!?
When he saw that it was Marlene, he hung his head in disappointment and left the room. Weirdo. But I do love him, and I have to say that's pretty great faith to think that Jesus might show up at your front door at any second.

That's All She Wrote
I'm sure there's more fun and excitement that I'm not writing about today. The kids are awfully quiet in the other room, though. That either means they're dead or they're plotting to take over the world. Either way, I should probably check on them. Stay tuned until next time, my friends. There is always more to come...

Friday, July 10, 2009

Home Sweet Home

Little Guy and I got home from the hospital on Wednesday. I'm so happy to be home with my little family again. I miss Number One terribly. He's in Utah with the King's parents. I'm anxious to get him home so we can resume some sense of normalcy again...whatever that means anymore.

It's a little bit surreal being home. Honestly, I'm not even sure what to think about it. I spend a whole lot of time monitoring Little Guy's oxygen and planning what needs to be done, but never really doing any of it. Wonderful friends put my house together for me, so I don't have a ton to do, but it's so overwhelming to look at the whole picture and realize just what we've been through and will continue to work through.

The Beast, Pretty, and Snort are in an AMAZING daycare (Thank you, Ms. Buffy!) and they're so happy there. I hate having them away from me, but it's just going to be three days a week. I think it'll be a good thing for them. And it's loving and stable and secure. They need that right now.

The King seems a little more on top of his game having me home. I'm a lot more on top of my game being home, so I guess we're even. I never want to be apart from him for that long ever again. There is no more lonesome feeling than knowing your mate is so close but still so far away and you can't just reach out and let him hold you.

I have a full heart when I look around and realize just how blessed our family is. Friends have brought meals, redone our damaged home, come here and been away from their own families to help us out, prayed for us, fasted for us, and cried with us. There are just no words to descirbe the way it feels to suddenly realize just how very loved we are. They say times of crisis show you who your real friends are. I had no idea how many we really had. I can honestly say I'm not often speechless. Seeing how blessed we are leaves me speechless, though. There are just no words to describe it all.

So, I'm home. My kids are home with me (accept Number One, who will be home soon). I love them. I love sitting at the table going nuts trying to get them to sit still to eat. I love hearing them giggle together. I love watching Snort gently place his head on Little Guy's lap and stroke his baby fine hair while saying his name over and over and over. I love looking at them peacefully sleeping in their tiny beds at night and trying to imagine what they're dreaming about. I love knowing that I made them. For all their quirks and faults and silly little unqiue behaviors, I made them. Me. And the King. They are direct results of a deep and eternal love. And they're mine. And I love knowing that my Heavenly Father is there to help me love and care for and nurture them. I love knowing that He loves them so much that He can't and won't let me fail.

We have a long road ahead of us for Little Guy. He won't have it easy. But, really, who does have it easy? We all have a story, don't we? For Number One, it's a story of learning that being the oldest has its perks as well as its downfalls. It's a story of learning patience and surviving being the "guinea pig" for parents who haven't had any practice before him.

For the Beast, it's a story of beating the odds. It's a story of looking opposition straight in the eye and defying it. And, it's a story of learning his place in the world. In a world where "outside the box" isn't always accepted, the Beast will have to find a place for himself. And he will. That's what he does best.

Pretty's story will be one of learning to be the only girl with four brothers, of learning to be a lady and still play with the men. I can't really predict the chapters of her story, but I know she'll grow to have stories to tell.
As for Snort, the story will be one of overcoming life's obstacles almost from day one. For one with such poor eyesight, he always manages to see the beauty in everyone with perfect vision. His will be a story of love.

And then there's Little Guy. Living his story will cause him to build muscle. He'll be the one who tells the story of walking five miles uphill both ways in snow and ice in the middle of July. And it may not even be that big of an exaggeration.

The greatest part of being home is that we're all here together again. We get to pick up and continue living our stories together as One. I'm grateful for that. I'm grateful for the messes on the floors, the handprints on the windows and walls and tables and...well, you get the idea. I'm grateful for the noisy voices running from one end of the house to the other and the science projects happening in my toilet and bathtub. I'm grateful for these children. Little Guy being so sick and forcing me to be away from my children has reminded me how grateful I am.

And, so with all the noise and messes and fingerprints, it is what it is. It's home sweet home. And I'm glad to be here.

Tuesday, July 7, 2009

There is an End in Sight!

The preliminary results of Little Guy's biopsy are coming in little by little. There are some tests that will actually take weeks to get, but what we do know so far is that we have ruled out the really bad stuff. We'll take that. Honestly, after the roller coaster of the mass on his brain and always turning blue with no reason and the fact that we do know for sure that whatever he has is VERY rare, just knowing that the "really bad stuff" is not what he has seems like a real gift. Who am I to look a gift horse in the mouth, right?

We also know this is going to be a long-term illness for him. He'll have to wear his oxygen for several years to come, if not permanently (the results of the biopsy will tell us more about long-term expectations). We still have some out-patient studies to do, and we know to plan on some hospitalizations during the winter. What it comes down to is that he'll more than likely have to be hospitalized every time he gets a cold or the flu because his lungs won't be able to handle any kind of extra work. At least we know what to expect, though, and I'm okay with that.

So, the next couple of days are going to be used to titrate his oxygen levels and make sure he's safe to go home. And then, if all goes well, we should be home by the weekend!!!! I think this calls for some sort of celebration or party or something, but maybe not at my house. Church friends have made it so clean and tidy that I just don't have the heart to invite dozens of people in to mess it up.

Anyway, there you go. Put on your party frocks and meet us someplace other than my house to have a very low-key party that won't work Little Guy up into having to work harder to breathe and jump (carefully) for joy with us that we get to bring our sweet boy home and once again resume some semblance of normalcy. (Was that a run-on sentence?)

Friday, July 3, 2009

We're Out of Surgery

Little Guy did great through the lung biopsy surgery. He hasn't had to go to ICU and is back on the pulmonology unit, but is in a lot of pain. He is being given lots of pain control medicine, but still just lays there moaning in his sleep. So sad. Poor Little Guy. He also isn't urinating, so the left side of his face is swelling. The doctors have ordered a catheter to drain the excess fluids from his bladder. He doesn't want to be touched, so I'm confident he'll be feeling the need to send a strongly worded letter to someone when he's being cathed. Hopefully, as the days go by, his pain level will subside and he'll be able to rest comfortably.

Thursday, July 2, 2009

Little Guy Wants Your Smiles

All of Little Guy's tests have come back negative so far. So, tomorrow morning he will have a lung biopsy. There are some risks to the procedure and we're a little nervous about it. But, we have an amazing team of doctors and Little Guy received a priesthood blessing tonight that was both comforting and reassuring.

This is our last-ditch effort. If this test doesn't tell us something, we're back to square one. We're opting not to even think about that right now and are instead thinking positively and just planning on getting all the answers we need from this biopsy.

One thing Little Guy just can't get enough of is faces looking back at him. Lots and lots of faces. We're trying to collect and print all the happy smiling faces we can get and put them all over his room and crib. A friend of our's kindly made Little Guy his very own blog. It's at . I hope you'll stop by it and e-mail your smiling face to the e-mail address listed on the right-hand side. He'll be so delighted to see all your faces smiling back at him and cheering him on. With the right attitude, we're just sure he'll be home in no time.