Thursday, July 24, 2008

Emily's 3 yr party :: July 2008

We had a great party again this year. We had 90 somethin people in attendance from 5 different states -- all for Emily! :) God has really blessed us with friends that care for us and Emily - these parties are our way of hosting some of the folks that have been a help over the last few years and more. I wish we could always include EVERYONE that has been an encouragement to us and loving fans of Emily. So, without further ado - the pictures!

Tuesday, July 15, 2008

Yippee, Emily is 3!!

Our beautiful baby girl is three years old today!!! It has been an amazing journey, and we have learned so much about life. What's important, what is not. Who we are, who we aren't. What we can do, what we can't. What we can dream, what we can accomplish. What we love, what we need to love. Who God is, who He's not. What is don't hurt me, don't hurt me... no more.... uh - sorry. We have learned about love, though, what it is and what's it's not.

Emily's life, with God's perfect purpose, teaches us more than we can ever imagine. She is the center of our lives, which keeps us from centering our lives on trivial things. She teaches Annabelle to love, when a smile is all she can give in return. She defines Diana's purpose, and clings to mommy's love. She shows her A-yee (aunt Cindy) that she loves and trusts her every move, completely. She teaches me that NOTHING in this world matters more than what God has given us - and nothing is more important than providing for the lives He has given to me.

I made a video for Emily's special day... bear with me, it is long. Get some popcorn or something b/c it's 9 minutes. I know, just watch it. ;) I have to admit, I choked myself up with this montage - Emily's life has so much more meaning that I could ever attempt to portray through the internet... (if you can't view the video below here is an alternate link)

Emily's life events (I'll add more as I remember them):
  • July 15, 2005 :: Emily Hope Lee is born in Baltimore, MD - happy and strong - blood was drawn to test for Spinal Muscular Atrophy (SMA).
  • 4 weeks :: Johns Hopkins Hospital tells us that "Emily is fine - no SMA." We learn they did the wrong test.
  • 5 weeks :: Emily is diagnosed with SMA, Type I. The same disease that took the life of our second daughter, Linnea.
  • 7 weeks :: Our first visit to Primary Children's Hospital, Salt Lake City, to take part in Dr. Swoboda's clinical study for Sodium Phenyl Buterate. Visits continue for 1 year.
  • 4 months :: Laproscopic surgery for G-tube (feeding tube) and Nissan fundoplication at CHOP.
  • 9 months Emily begins g-tube feeds only :: swallow is lost.
  • 16 months :: First major sickness caused right lung to collapse - intubated at Johns Hopkins University Hospital. Major arguments with doctors and nurses about Emily's care, but we all survive. Emily lost a lot of weight and strength though.
  • 24 months :: 2nd B'day party. BIG bash - 100+ people!
  • 29 months :: next major hospitalization :: RSV :: almost lose Emily twice. More major arguments with Hopkins staff - after failed extubation we planned for air transport to Madison, WI. Reasonable doctors came on shift and we agreed on an extubation plan. It worked!! I hope the doctors were taking notes, and that they all learned some things from us that month.

Sunday, July 13, 2008

Planks and Screws

I wasn't going to work on the deck today, but I couldn't help it. All I have left it laying the planks and screwing a million deck screws. But, the satisfaction of seeing the deck surface grow is tremendous, so I had to keep going. 11 rows today.... 20 or more to go.

Peace <><

Saturday, July 12, 2008

Hit the deck!

I would never say that home repair is a hobby of mine, but looking at the last two years it sure seems like it. Finished basement, laminate flooring, kitchen redesign, wash and stain deck (which I will NEVER do again... if I can help it), some landscaping, etc..... :: most of which I could NOT have done without the help and guidance of incredible friends. Thanks to all who have helped me not completely screw up these significant projects!!

So to keep from getting lazy (and maybe a wee bit of ADD), I continue thinking of new projects. The latest is building a lower level deck beneath our existing second story deck. Seemed simple enough, and thanks to Chrystopher it won't be another unrealized dream. (I do realize that my eyes and heart can be bigger than most of my abilities in the area of home repair, but God always provides a good friend to help make my ideas work out. :))

Now, the great thing about this deck is that it will give us the ability to sit out back, out of the sun, as a family. We'll hang a bench swing and I'll probably put up a bolt for Emily's swing. With power access on the deck we can bring her equipment down too, if need be.

- Emily's doing pretty good, but fighting a cold or something right now. She's generally pretty happy, but requires some extra work, on top of routine care, to keep her O2 sats up where they need to be. She'll be 3 in just a few days!!! Incredible. :*)

Peace <><