Update: 01/27/15
We started Monday AM at Cleveland Clinic Children's
with Bloodwork with our favorite VEIN WHISPERER - Big John... as usual he was on point.
Stick. Draw. Viles Filled. Boom. Always giving us his best... We will be seeing him once a week for the next couple months...
Our Drs. Appointments now are every other week....
Last week we saw Dr. Radahkrishnan (our LIVER dr.) Then we will have clinics (where the whole team comes in) once a month as well.
And that is it. 4 Labs and 2 Drs Appointments... As long as we stay on course. that. is. it.
Brodie’s labs the past couple weeks have come back great – everything is almost where it should be – potassium levels are high.
Dr. Krishnan explained - this is most likely stemming from a side effect of the medication (PROGRAF) ... So we need to watch it - a long term effect could potentially be damaging to his kidneys.
Sooooo we could start him on ANOTHER MED to keep sodium in and flush out potassium... You know my MAMA-BEAR-NO-MORE-MED-RADAR started whirring...
After conversation we decided to give it some time to see how things progress with little man before we treat it with anything.
As for our family on the homefront...
You all know Harper (Brodie's 4 year old sister) has been so important to me to be part of this and not an outsider looking in...here are some things that have evolved...
Every day at lunch I pretend to call her on the phone -
"Hi this is Brodie's Mama.. is this Harper the Pharmacist? I was wondering if you could help me with some medications...." (and I did have to explain at first WHAT a pharmacist does and WHY they are SO IMPORTANT)...
And then I pretend to drive over to her pharmacy (as she eats her lunch at the kitchen table) and she grinds up Brodie's aspirin so we can put it in his food. She loves this and asks every day to do help....
On a good day she also can tell you the names of all of his medicines - and she knows what the really really important one is...
Some things that I have put in place are really taking a life of their own...
She is now officially obsessed with "Magic Soap" aka Hand Sanitizer - Santa brought us TONS in our stocking (he knows all) and they are the scented Bath & Body Works kind and she applies it literally over 100 times a day... But she is CLEAN and it smells GOOD so I guess this is not bad... right?
She also is VERY conscious of when other kiddos are SICK... She has learned through the hard way of canceled play dates or us not being able to go somewhere because of an illness...
The other day we were face-timing with our cousins who were under the weather and she looks at me big sister game face on - she looked so scared - and she says "Can these GERMS come through the phone? Can we get these things over here from them?" HAHA!
We talk about other families that we have met and their "babies" that are going through similar life challenges...
Every night in her prayers she prays for Baby Luke (Luke's Legendary Liver League) and Baby Isaac and Baby Grace... And any other family that we come across who is going through their life challenge we add to our list... Most recently Brave Blake's Battle who just got a new kidney!!!
We are realizing that Brodie is slowing coming off of the CRAZY-LIVER-TRAIN and his body is now resolving to a SWEET LITTLE healthy 8 MONTH OLD baby ...
In his DRIVER SEAT is a PERFECT normal little BABY and in his PASSENGER SEAT are his little LIVER challenges that might occasionally want to take the wheel.
So now, today, we deal with “the hard work of growing” what all love nuggets deal with liiiiiike growing his teefers – 2 of his bottoms have busted through and I see one of the top ones about to come through as well.
He now (much to my chagrin) has been singing DA-DA DA-DA DA-DA at the top of his lungs with Russ beaming every time the words escape his lips.
He loves jumping and jumping and jumping in his jumper.
He stares, enamored at his little sister laughing at her every move.
He smiles at me with a Cheshire cat grin when I feebly attempt to singAdele's “Hello” it is his very favorite song right now.
He can do all of this while he sits, by himself (surrounded by pillows “just in case”) proudly saying silently “LOOK AT ME. Look how BIG and STRONG – I AM!
Yes my little warrior man. You are SO very strong. Stronger than you will ever know.
