One Year Ago Today...

It's hard to believe that it has been an entire year since this chapter of our lives began.  I sometimes (albeit rarely) wonder where the time has gone.  Mostly, this has been one of the longest and hardest years of my life. 

Reilly has held up remarkably well.  Those that know and love her are amazed by her strength and stamina.  I thank God every day that she is young enough to have her memories glossed over by time once she is old enough to really understand the issues with her body.  We are fortunate that she is not scared and she is not, for the most part, in pain.  She is becoming a professional at taking (her own) vital signs!  Maybe she will be a step ahead in a career in the medical field.  What other 4 yr olds really know where their spleen and liver are? 

It is a very hard thing as parent to accept that there are things going on in/with your child that you have absolutely no control over.  I continue to think that every single day Reilly is happy, alert and otherwise healthy (in relative comparison) is a gift.   She drives us a little crazy sometimes, with her sassy attitude and unbending will and determination.  If you think about it though, without those attributes, she may not have made it this far, this well, for this long.  SO, even if I want to sometimes duct tape her mouth shut and tie her to a chair, I am extremely thankful for that fiery personality and mindset. 

Today is also 2 weeks before we leave for Chicago.  I think we have everything we need, or at least I hope so!  If we haven't got it yet, I guess we don't need it.  All of the arrangements and confirmations are in order, except for Kohl's house, which hopefully will be taken care of next week.  After that, the only thing remaining is to pack our stuff, which may be easier said (or written) than done.  We will make it though.

Cole is going to have his birthday celebration early so that we can all participate since Reilly and I will be in Chicago on his actual birthday.  He's a champ and is doing a great job at being helpful and thoughtful, as if he could be anything but.  I think he is becoming a little nervous, just like the rest of us; but all in all, as long as he is kept in the loop about the arrangements and the basic plan of attack, he is a smooth operator! 

 Please continue to keep our family in your thoughts and prayers.  As I have said before, we have a long road ahead of us, but with the grace of God, we will continue to see blessings and showers of love upon us.  We are surrounded with love and support from our family and friends.  People from all over have lifted our family up in prayer.  We are forever grateful.  I will keep you posted with our progress through this adventure!

ALL THINGS IN PLACE FOR SURGERY!

Some already know, many do not...all things are in place for Reilly's surgery!  She is scheduled for March 19, with pre-op on March 15 & 16.  We leave for Chicago on March 13.  All paperwork is in place and ready to go!

Presently, Reilly is holding up well.  We are going to have Cole's birthday party early because our family will not be together on his actual birthday (he is very excited about his party, however).  She goes to Dr. Noel on the 24th of this month and will have bloodwork at that time.  Barring certain issues (like very low numbers or an active bleed), she will not have another scope prior to her surgery!  We will see her pediatrician shortly before we leave for Chicago to have her cleared for the surgery and we will be all set. 

We are very thankful for all of the prayers and support that have helped us this far.  Please continue to pray for health and healing as Reilly makes her way through surgery and recovery.  I will post soon!