Wednesday, June 30, 2010

What a Few Weeks!!

We have had a lot going on, but it has been mostly “busy” stuff instead of scary stuff.  I’ll take busy any day.

Lily is getting her spunk back!
 Lily is able to play and have mostly good days now, even with all of that hardware in her face.  The doctor was right, once we stopped advancing bone, her pain went down significantly.  It is still a big showdown and tearful, crying occasion every day when I clean the pin sites, but I think even that will improve as they heal.  The times she accidentally gets her pins bumped or stuck on something are also not very good moments.  It looks like Lily will be getting her pins out sometime mid to late August.   She tells me every day, very seriously, “I haa ees in”......”  “I hate these pins”......but then she moves on to the next adventure of the day.   

The BEST news we have had is.......Lily saw her ENT last week and Dr. L said she was putting Lily on the schedule for Sept. 22 for a bronchscopy, and subsequent admission into the ICU to take her TRACH OUT!!!!!  Did I just type that??? Did I just type the words I have been waiting for, forever it seems?  I realize there are all sorts of caveats here....if she gets sick, it will be bumped back, etc....but at least it is on the schedule.  We capped her trach in the ENT’s office, and for the first time ever, Lily was pink and breathing fine, not turning gray and struggling to breath.  I was dancing around, and the ENT hugged me as she beamed and said “This is the best part of my job!”  

So, now we are practicing capping her trach at home, which in typical two year old fashion, Lily is in charge of when we put the cap know, it is HER trach!!!  But, when we do cap, she is doing fine. 
Yes, we sit in the kitchen floor taking pictures!

We celebrated a very special birthday!  Every birthday is special for a boy who almost didn’t make it at birth.....that story is for another day, but suffice it to say, we all send up special prayers of thanksgiving for every birthday of our sweet guy.  He has had his trach out for four years now, lots of hope when I look at this face, and know that we are very close with Lily!!

So, life is getting back to our usual intensely medical family kind of days, but I am eternally grateful for each day that is a “No ER” day, days that I am concerned about laundry and cooking, and not about when I can give the next dose of oxycodone. While those especially hard days are good for us, I am not a saint...yet...and I don’t go running towards suffering.  I usually come out of “those times”, though, with a much greater appreciation for the blessings God has given us, especially the grace to get through seemingly impossible things.  He is truly Good...all of the time!

With many thanks for your numerous prayers,


  1. You all look so beautiful!! Glad to see some smiles and read about the busy days, not the medically intense ones!! August is just a few weekends away. :)

    Hugs all around to your sweet family,


  2. Wonderful to see those happy smiles! I pray for many peaceful non-ER days in your future. Having things "on the schedule" is big even if it doesn't happen right on schedule. But I will definitely it stays September 22 for Lily!

  3. Hello it's Ruth from "the Mom". I'm in love with your little lily, so cute. I had to laugh when you called our life a "sorority". I often refer to it as the club that no one wants to join. You have to get "jumped" in. It's weird the connection you feel with the other members. It's intsant. I know our daughters have different "extras", but the experience is the same. I am glad we found each other, I will be following your Happy family.

  4. Deo Gratias!!

    Big hugs and continued prayers from here!