Monday, July 8, 2013

All you need is love

I woke up this morning and looked at Dave like he was crazy getting out of bed so early on a Sunday.... I suppose I was hoping the long weekend would never end!  The last 4 days were a nice break from the constant go, go, go and we really enjoyed being together as a family.  Now we're trying to figure out the logistics of going out of town for the weekend with everyone.  It's probably going to take more planning then I am prepared for!

4th of July was hot but, tons of fun.  One of our air conditioners went out on Wednesday and the a/c company couldn't get a new one until Friday so we were very creative with cooling techniques in the house.  Thankfully, we still had one operational a/c unit and Dave brought home the industrial sized fan from the office to blow air down the stairs.  We then took another fan and pointed it at Riley's room to at least get some cool air in there.  Riley is very sensitive to heat and always has been.  But, we survived and Riley did well despite the temperatures in the house.  Just another one of those bumps in the road that really make me go why us?!?!

We also bbq'd and had family and friends over for the 4th.  The kids all went swimming and before it got too dark we let the older kids play with the sparklers and the adults lit some of the various fireworks that we had.   Once it got dark we walked up on the golf course and were able to catch fireworks from many different shows going on around us.  Not the best views but, it was nice not to fight crowds and be able to see some fireworks right in our backyard.

All ready for the 4th!

Ready to ride big brother's scooter!
Loves from Mia
Post swim sippy
Smiles with Mia
Hanging out by the ice chest (Just like their daddy's do)
One last sparkler before bed!

The rest of the weekend we relaxed, ran errands and spent time together.  Yesterday Logan was invited to his buddies 5th Birthday party.  He happens to live about 10 houses up the street from us so we were in countdown mode all weekend long for the moment Logan could run up the street to the party.  To say he was excited is an understatement.  Logan's buddy will be continuing with him to Sonrise Kindergarten next year so we are thrilled that the boys have clicked and see many play dates in our future!
Ready for the TMNT party!
Water slide fun

Riley had a great weekend and is still amazing us with her resilience and small improvements here and there.  It's safe to say she even cracked a few smiles this weekend.  Thursday during our bbq her cousin Drew spent a ton of time sitting with Riley and holding her hand.  I'm tearing up just thinking about it.  She stared him down and I know loved every minute of the company.  Drew was one of the lucky ones that Riley adored pre illness.  She was and still is our persnickety baby!  Riley is here and fighting because of our amazing family and friends and we know she feels the love all around her.  Perhaps that is what encourages her to fight on each and every single day.  The Beatles said/sang it best, "All you need is love".

This week Riley will have PT/ST and communication therapy through the school district.  She'll also get botox tomorrow as long as everything falls in to place.  I'm excited for her communication therapy to start and anxious to see what we'll all be learning.  I've pulled out the Baby Signs book I got when I took a class with Logan when he was a little under a year.  I'm hoping to start teaching the boys signs and who knows it might even help Mason right now as he's learning to talk!  I have a feeling we will all be signing in no time and that Riley will be able to communicate with us more once she finds "her" way. 

At one of Riley's PT appointments this week a rep from a medical supply company will be coming out to fit Riley for a bath seat and stander.  The infant tub that is currently being used is getting a bit small for Riley.  One of Riley's nurses improvised a stander last week with the twins activity center.  Riley tolerated it but, was not thrilled to have to have her feet touching the bottom of it.  It's important though for her to put weight on her legs and to feel what it is like to stand up.

We hope you had a wonderful long weekend complete with family, friends, fireworks and fun!

Fight On!

Dave, Megan, Logan, Mason and Courageous Riley!

1 comment:

  1. I just loved this post! It is a challenge to discover a "new normal" but I see the happy smiles and I think you guys are amazing!!!!