Monday, November 4, 2013


We are HOME!!!  YAY!!!!

We left Boston Children's Hospital on Friday.  My sister (Thank GOD) joined us for the ride home.  Lyla did great.  We stopped half way home at about 7pm and checked in to a hotel.  Lyla needed her breathing treatments so it worked out great.  Then we left at 9 am Saturday morning to head home!!  Oh it was so good to be home!  Lyla was doing fabulous until lunch time.  She choked a little bit on a piece of chicken.  UGH!!  Then she started to choke on lots of phlegm.  The Doctor warned me that this could happen since everything in her lungs was now so loose.  Well we couldn't get her to stop coughing and we couldn't get her breathing slowed down.  So Dave took her to the ER.  They gave her a steroid via an IV and she was better in minutes.  CRAZY!!!  I know!!!!  So she came home AGAIN 3 hours later.  This girl is something I tell you!!!!!  That saying that has something to do with "keeping you on your toes"!!!  Yep, I totally get that!!!!  I am scared to death one minute with her and the next I think she is the healthiest child I have ever seen.  HA!!!  It really is that up and down.  She is so so so tough!!!  I don't know anyone as tough as her.  She could care less that she is sick.  That is not going to stop her from doing whatever she wants!!  She rips her O2 off about a MILLION times a day.  She can be purple as a plum and still have more fight in her then ANYONE!!!  Oh My!!!

Lyla will have some testing in Buffalo in the next few weeks.  Dr. Marx (Boston) believes she is having acid reflux at night and aspirating.  He believes this could explain her very high lung pressures.  So if this is true and this can be fixed, recovery from heart surgery will be so much easier.  So that is our next step.

Then we will return to Boston in January in hopes to try it all again.  The FOURTH time has to be the RIGHT time!!!  Don't you think?  We were scheduled to go back in December.  But Dr. Marx came to talk to me in the hospital one morning.  He started with "I want to be very honest".  He expressed that he doesn't want our family to associate Christmas with what could be a very critical time for Lyla.  Not easy to hear of course but I am so grateful that Dr. Marx is so very considerate!! WOW!!! So January it is and we could not agree more!!! 

Leaving Boston Children's Hospital I cried for at least 30 minutes.  A heavy cry that was obviously just waiting to come out.  I cried for all the families that leave that hospital or any hospital with out the child they brought in.  I cried grateful tears that once again I was BLESSED to bring Lyla home.  I realize that we may not always be this fortunate.  So I promise with all my being that we will make the best of every moment we have together.  

Thank you so much for Praying for Lyla!!!  I know with every bit of my soul that those PRAYERS get her through every obstacle with flying colors!!!!! 


  1. Oh my, the post is very worrisome! It actually made me cry! I donated anonymously to you to bring Lyla back from the Ukraine and I love seeing her so happy! It is like a miracle! I have to hope that she will be ok after the surgery, she has so many people - people she does not even know like me - praying for her to make it. She just has to!!! The transformation in her is dramatic - I have to think she will be ok and be able to be happy with her new loving family!

  2. I see she has learned to be quite a little "ham" in front of the camera!!