Update: 03/14/16 – Brodie is the big 1-0 months today – hip hip hooray! Happy 10 months to the strongest, most cuddly, giggly, happy, resilient, amazing little love nugget warrior in the world! I cannot believe that he will be 1 in two months! EEEEEEKKKKKK!!!!!!!
He has 3 teeth (2 bottom and 1 top) and 3 more coming in (all on the top). He has figured out how to cruise by himself in his walker. He is not crawling. He is furniture surfing (with help) and trying to stand on his own. He is OBSESSED with his big sissy - she is his everything. He loves watching our pooch. He has recently started screeching like a pterodactyl when he does not get what he wants when he wants. His newest trick is smacking his lips together – A-PWUW A-PWUW A-PWUW… His Daddy is his favorite person right now – the way he looks at him would melt your heart. His personality is bigger than the state of Texas. He desperately wants to be on the go at all times. He wakes up smiling every morning – (he definitely did not get this from me). Being outside makes him become alive – he would sit out there all day. He hates baby food and only eats table food. He eats more than most two year olds – weighing in at 25 LBS. At 10 months he has lived a life that only story books and movies can tell and he has no idea. And he LOVES his new LIVER.
Today we spent celebrating this little mans 10 months at Cleveland Clinic Children's. Our morning started with the one and only Big John our favorite VEIN WHISPERER… he greeted us with a big smile and asked his favorite little man for a high five.
I updated him on the excitement we had last week and of course in a blink of an eye (and through some crying and screaming from your favorite little guy) we had a vial filled with the red stuff ready to go get processed. John found us a room so we could have some privacy – a quick diaper change, shot, medicine and we were ready to rock.
We cruised down to go see some of the best ladies in CC our favorite team down in Peds Ultrasounds (u/s). After checking in we took a seat and played for a little and as we waited I caught a glimpse of another warrior and her Mama - Maroon for Maisie – we exchanged hellos as they raced by to their appointment – (if you haven’t heard their fabulous news – SHE FOUND A MATCH and will be going through a Bone Marrow Transplant in the Fall – so amazing!!!!)
Our U/S tech came to greet us – a new face from the team Angie – took us back for the U/S adventure to begin… Brodie was in top spirits and brought his A-game but so did Angie – we played, cried, read, sang, drank (Brodie not us), danced and barreled our way through the hour long U/S…
Then we had a surprise visit Missy who is another tech on the team came to visit us – she had cared for Brodie when he was in the PICU taking most of his U/S - we have not seen her since before Christmas. After catching up and breaking down what has been happening we had to motor up to Vascular U/S.
This was a new area for us. We were checking to make sure there were no upper extremity clots. This includes neck, arms, shoulder areas – this was interesting as they typically do not get a ton of pediatric patients – Brodie’s patience had worn thin by this point.
He was screaming and crying – I was singing Adele and John Denver – and wasn’t sure if I should feel bad for the techs because they were listening to MY singing or Brodie’s crying! BUT – we made it through and the team was so kind and awesome.
As I was getting him dressed I shared our journey with them – how things have unfolded from September until now and as I unleashed the “Liver Tale of Brodie” - I found myself having such a profound appreciation for this 10 month mark that we have met.
Tichy our NP called us today to let us know that there were no new clots, all the labs came back good – no changes and our existing blood clot is same – no better and no worse. Hallelujah!!!!!!
Tonite reflecting on today’s events - I still find myself reeling in the miracle of the little life we created, sustained and celebrate and what a crazy ride it has been to get here. Right here, right now - I am so thankful for my little Warrior with his beautiful rainbow scar, his scary beautiful story to tell and cannot wait to see the light he spreads in the world…
XO - TT