Thursday, February 18, 2010


 I have so much gratitude today.....the sun is shining, gleaming off of the snow, like a sparkly show just for us!  My girl is here, setting up her home office at the end of the couch.....the girl has some serious catching up to do of very important work.  Notice the pink sticky note there? 

I am grateful for home monitors, that I can check Lily’s oxygen levels in the middle of the night.....and know they are okay.....I am grateful for insurance, doctors, compassionate good nurses, respiratory therapists who really know their stuff, 24 hour pharmacies, decaf coffee, dark Snicker bars, (I could hug the person that came up with that two fav things....dark chocolate AND Snickers???)
I am grateful for my family....oh, my family.  My husband, who makes princess shoes out of index cards, at his girl’s hospital bedside.....because he knew it would brighten her day.  I know he would walk through fire and glass for his girls, both of us are lucky to call him our own.....for my big boys, who are the most amazing teenagers, ever, ever, ever.  I couldn’t do what I do without them.  You won’t find any more selfless and giving teen age boys anywhere.  AND...for my younger boys....who have hung in there through the chaos, folding clothes, cleaning up, drawing pretty pictures for their little sister, making sure they take their asthma meds through their own pneumonia this week...not whining, (at least not too much) in the midst of the storm.  For my poor mom, who hasn’t seen any of us for almost a year, and comes up to visit, only to be called into action to smooth out the craziness.  Thanks, Mom...I know next time Lily will be her perky self!!

AND....I have so much gratitude for YOU.....for my friends reading this, for prayers, and support.  I felt your prayers as I shook with anxiety at Lily’s bedside, wondering what the next several hours would mean, thank you.  

We have quite a road ahead of us, with her jaw reconstruction coming up soon, and all that it entails.  But for today, I am staying right the sunshine....hugging my girl. 

Tuesday, February 16, 2010

Lily is Home!

Here she is.....back on her own couch, after getting the “mandatory as soon as you get home from the hospital bath”.  Lily is rather pre-occupied with a nail or something, that is okay....better than messing with her IV’s at the hospital!  I realize she has Christmas jammies on, but she was so chilled out of the tub, I grabbed the first thing I saw, with purple socks.  We can handle it all when we aren’t trying to color co-ordinate with oxygen and IV’s.

Lily is breathing okay, still a little fast if she moves around......everything wears her out....but her oxygen levels stayed steady for several hours today in the hospital without the extra O2, even through a long nap.  I think she is going to be recovering for a while still, but we are so thankful she is making progress!

I am so, so grateful for your prayers, you all are the best!  There is nothing like a sick baby in the hospital to put a lot of things into perspective.

Monday, February 15, 2010

Lily’s Update

Hi Everyone,

Lily continues on in the hospital, on oxygen and IV’s.  They tried to wean down her oxygen late Saturday, but by yesterday afternoon, she was back to breathing harder and having a difficult time keeping her oxygen levels up.  So, they bumped her back up.....and that is where she is now.  The good news is, she smiled today after getting a bath in the bed and getting her hair combed out, (that was the biggest rat’s nest I have ever seen!!), and signed, “Happy!”  Ohhh, isn’t that the best???  She is much more awake, although we haven’t heard one peep out of her voice wise, she is just signing.  I am sure with all of the coughing she did, her poor little vocal cords are very swollen and sore. It takes a lot of respiratory effort for her talk anyway with her trach, so it might be another few days for her to be able to vocalize.

The doctor thinks it still might be a few days before she comes guess is Wednesday at the very earliest, probably Thursday or Friday.  She still isn’t tolerating her g-tube feeds very well, and we are only at half of what she normally gets for the day.

I really appreciate the prayers!  They sustain us.
God Bless!

Saturday, February 13, 2010

Lily’s ongoing situation

Hi Friends,

I thought I would update Lily’s hospital stay from here......she has pneumonia, is very sick...but responding well to treatment.  They have her on IV fluids and IV antibiotics.  She has coughed so much for so many days, that she is utterly exhausted and has slept for over 12 hours.  Lily is keeping her oxygen levels up with a modest amount of oxygen, her cough has lessened significantly, and she is resting well.  The doctor thinks she is completely spent....and will take a few days to get off the oxygen and regain her pulmonary strength.
I am so, so thankful for your prayers......she is a special little girl.....and I am so grateful that she is getting the care she needs and the prayers from so many.

I’ll update tomorrow if I get a chance!

Thursday, February 11, 2010


Lily is still very, very sick.  High temp....breathing harder...and now she has GI issues after taking the motrin for her temp.....she has old blood coming up out of her g-tube, and keeps retching with every feed of Pedialyte.  We are going back in for the second day in a row.....just to check in and see how her lungs sound and see about some GI meds for her poor belly.  Keep the prayers up, I really do appreciate it!

Wednesday, February 10, 2010

Prayers, Please.

My poor little one, Lily, is very sick with a respiratory of her big brothers has had pneumonia this week....I fear this is where she is heading as well.  To be that sick is bad enough, to have a trach and g-tube makes it all a bit more scary.  She is coughing so bad, she can’t hardly take anything through her tube...please pray for her!!!!

Monday, February 8, 2010

Oh Well......

If you are going to lose to someone.....I guess it makes it easier to lose to a class act like Drew Brees.  My boys were heartbroken for a while, but the older two rallied with “Oh well, it is just a football game, it pales in comparison to things like the Pro-Life issue.”  I suspect they still might be a little sluggish in getting moving with their day!


Thursday, February 4, 2010

Cool DIY it!!

Check out this new is called the DIY Dish,  which is a series of videos on line these two ladies, Kim and Kris, are producing to show all of us different DIY projects.  To be included are embroidery, sewing, quilting, scrapbooking, projects with kids, too many to name!  I believe it is starting this Spring.
Here is a little preview....and yes...they are identical twins!!!

Go to the site,  and see how you can win a new sewing machine!!!  Janome is giving away two machines, one for sewing/quilting, and the other is for embroidery.  Leave a comment on their blog, and you could win!!  If you sign up for their newsletter, you can get the webcasts sent to you, and that puts your name in the hat again for the machines!!  There are several ways to increase your chances to win......those marketing girls are good!! :)

I love anything that actually SHOWS how to do things, like sewing.  I am a very visual and hands on kind of girl, I don’t do as well just reading something from a book.  We’ll have to see what kind of fun things Kim and Kris come out with in the months to come!  I like things like this, especially when several of the troops are down with colds and the Winter suddenly seems so, so long.....

Craft Fearlessly!!