Update: 10/14/2016 As the days tick by closer and closer to our big one year anniversary I just cannot believe it. I mean the first two years of life of a little child are amazing… let alone when they get a second chance at life!
How is Brodie? As stubborn as a donkey, a bull in a china shop, funnier than most 17 month olds, a major flirt and only when he feels like it a total lover. He is awesome. Except if you are Harper, his new favorite things are traumatizing his older sister, pulling her hair, hitting her (cackling laughing thinking it is hilarious), interested in everything that she is doing. Basically on a mission to become or ruin his older sister’s life.
How is Harper? She is as spunky as ever, I feel like she is 14 when I talk to her sometimes and then quickly with the innocence of a child thought or question we fly back to 4 year old mode. She loves going to school and is quickly becoming her own little person. She loves her brother and is begging for a “new baby” they are just so cute and cuddly Mama – Brodie isn’t cuddly anymore. HA! I am having a difficult time convincing her that ALL babies grow out of the cuddly mode.
Brodie’s health is doing well, very well – his liver functionality is 100% spot on. Exactly where it should be AST & ALT levels are within range, blood counts are normal, H&H is on point and then… there is our arch nemesis – the portal vein with the blood clot…
We have been doing regular Ultrasound appointments to check on Brodie’s flow into his portal vein (this is where he had his blood clot and received his stents) everything is measured, evaluated and assessed – sizes, flow, fluidity, etc. Every time things have looked good – this last time there was some concern about the Portal vein area where Brodie’s stents are.
As you all know Brodie is off of his blood thinners (the shots of Lovenox) and is growing so things are changing and as of our most recent ultrasound our team was not 100% happy with some of the measurements of flow into the portal vein.
The only way to get a better assessment of this is by a CT Scan to take better pictures that will show everything much more clearly and accurately. CT Scans are no big deal to us big people, who understand how to lay and stay still and not move, but to littles who hate to be pinned down, told not to move, restrained and fight every single moment there is no way they can work with you.
So alas, sigh they must be put under in order to get the imaging necessary. You all are probably thinking – well in the grand scheme of things – this is no big deal. And there is one side of me says yes, you are right, this is no big deal…
but then there is the other side of me that has to watch my baby once again fight scream and cry for an IV to be put in, rock him as he cries and screams and is put to sleep, once again be wheeled off to undergo another procedure..
And as our baby is in a room alone with the best medical professionals atCleveland Clinic Children's, once again we will live in the parent purgatory of uncertainty while we await the results that may in fact determine that we need to start some other form of treatment that this little warrior just does not stinking deserve or it could tell us that everything is good.
Just another game of cat and mouse.
So until 10/26 when we have our CT Scan I am putting on my rose colored glasses.
I am rocking out with the American Liver Foundation- Heartland Division as their LIVEr CHAMPION this Monday at their amazing event – Flavors NEO 2016 10/17!!!!!!!!!
We are celebrating the heck out of Brodie’s New Liver Birthday 10/19/2016 which is coming so SOON EEK!!!
The best little group is planning the most fun BARN BASH 10/22 – to HELP OTHERS and so we can celebrate life as a tribe and relentlessly pray for our little guy and all of the other little warriors that are fighting their fight every day.
I have told you all about my little obsession with Time Hop and a quotes bounced at me this week that I had saved for myself last year…
“What we do for ourselves dies with us. What we do for others and the world remains and is immortal.”
I am optimistic and excited for our future, in our life we know that there are never guarantees and always will be uncertainty.
There is a quote that I feel like describes my every day battle with mindset: “Ego says, Once everything falls into place, I’ll feel peace. Spirit says, Find your peace, and then everything will fall into place.” – Marianne Williamson
Now I just have to convince my overplanner, A-driver personality to let spirit lead and ego follow, I let go of a little liver, I should be able to let go of the control stick!
Hope to see you all at the BARN BASH if not send some GOOD VIBES to Brodie on his one year celebration. Gratitude and Liver Love to you all!