Update 01/06/2016: I have been struggling to conceptualize all of the emotions that I have been overcome with the past couple of weeks so I apologize for laying low, I think I needed some time for me.
Holidays are tricky right? I feel like everyone has something that either makes their heart soar or crumble around this time every year.
I think of our 2014 Christmas and how thrilling it was for my family – My brother & SIL had just welcomed their 2nd child in December, my other brother & SIL were expecting in April 2015 – just five weeks ahead of us - and WE were going to be welcoming Baby #2 in May 2015. That would take the grandkid count for our parents from 2 to 5 in a years time and we would have 3 cousins just 5 months apart.
The air in our house that holiday was filled with electricity of love, hope and excitement. We all laughed and dreamed of what the Year 2015 would be filled with - “this time next Christmas…” We all pondered about the cries, chaos and happiness that only toddlers and infants can create.
That time was so hopeful and promising of new life and new adventure. Reflecting on this and going through this Christmas and being part of the screams, fun and cries – just like we anticipated but with only half of the Tigue tribe. The other half was at home staying away from “cold and flu germs” to protect our sweet guy. This time was so bittersweet to me.
So of course it gave me time to reflect on where I was a year ago – I had anticipated the New Year of 2015 to be filled with craziness and chaos, coupled with love and laugher as we adapted another human in our household and our adventures in parenting continued…
I never envisioned that it would also hold terror and and agony for us. As we went through the throws of DIAGNOSIS of BILIARY ATRESIA and then… CURE through LIVER TRANSPLANT – a successful, BEAUTIFUL, LIVING DONOR liver transplant – to us CELEBRATING a MIRACLE made through modern science, technology and medicine at the Cleveland Clinic.
2015 also allowed me to witness a TRIBAL COMMUNITY RALLYING around us to help us FLY through the lowest point in our lives. Feeling LOVE like we have never felt before. Feeling SUPPORT in ways we could never dream of asking for.
That gets us to the end of 2015 to embark on 2016 with the same FEELING of HOPE and PROMISE of NEW LIFE – just in a very different way. And that my BGVTribe is overwhelming.
The Liver Team gave us off for Christmas and NYE we did not have to go in for 12 days. Yup 12. It was heaven J you don’t realize how taxing the journeys are – more mentally than anything. The drive. The tests. The “results”. The fear or relief that you are overcome with each time. So regardless to say it was peaceful for me and the family.
Brodie had his clinic yesterday and he is just doing beautifully. We saw our big guy first thing in the AM – John – he as usual is amazing. Brodie can now just sit in my lap and get drawn. It took John about 45 seconds to fill up all the tubes.
We then had a nice long break and had an opportunity to briefly meet with another family that I have befriended through this life adventure whose little guy also has Biliary Atresia. He is just a couple weeks age difference from Brodie and these strong warriors are going through their own life adventure similar to ours.
Then we made our way down to go get an Ultrasound from some of our favorite ladies. Seriously Brodie is in love with all of the techs – he stayed awake the whole time – smiling, dancing, playing with the cord, trying to eat the cord, dancing with the cord… Lots of fun. As usual our Tech was patient, playful and spot on with her work.
We then made our way up to Clinics to get our results. Our 7 month old chunky monkey warrior weighed in at a whopping 22# 8.75 oz., Brodie has been OFF of his steroids for a month now – so all the chub you see and those cheeks you want to gobble are 100% HIS. (now if we could just get him a little longer – HA!)
Ultrasound looks great, Labs look great, He looks great.
Labs noted that his potassium level is high which most likely is a side effect from the Prograf that he is on and this can cause other side effects down the road - so we need to monitor to see if this needs to be treated (this would be treated by another medication – which of course I want nothing to do with). We are currently on 4 Meds (Prograf - Tacromolis, Acyclovir, Bactrim & Aspirin) and 2 Vitamins (D & Iron) which in the grand scheme of things is really really good. But of course as a Mom you don’t want any more medicine if your child can get by with out it!
So all in all Brodie is just LIVING and being an everyday 7 month old – adapting to the life of growing teeth (it is SO HARD) (we just got our TWO BOTTOM TEETH) and learning to EAT FOOD (he has decided he wants REAL table food).
So our little WARRIOR – our little Brodie is doing just FAB.
Which brings me back to the feeling of HOPE and PROMISE that I think we all have for the beginning of the New Year. I know as the anticipation of what the year 2016 will hold for us – using these emotions to help us CONQUER this life challenge is the only option and it should be for you too. So through OPTIMISM and HOPE and BELIEVING we embrace this NEW YEAR – BRING ON 2016.
LOVE AND WARRIOR GOOD VIBES