Blurry but, Riley being silly on Christmas Day just hours before her first seizure
Waiting in the ER
Starting this journey. Intubated/comatose and barely hanging on.
In the last 6 months Riley:
Spent 36 days in the PICU @ CHOC
Celebrated New Year's at CHOC
Had 2 MRI's
Multiple CT's scans and more chest xrays then I can keep track of
Had a blood transfusion
Opened her eyes on New Year's Day giving us hope that she may make it
Received a trach and a g-tube
Spent 64 days @ Healthbridge
Celebrated Valentine's Day, Her 1st Birthday, St. Patrick's Day and Easter @ Healthbridge
Has been home for 83 days!
Celebrated Mother's Day @ Home
Celebrated Father's Day @ Home
During the last 180 + days Riley has also:
Started to respond to sounds and toys
Started to roll with little to no assistance from side to side
Started to pull up/hold her head almost completely on her own
Attended tons of doctor and therapy appointments
Got new glasses!
Was fitted for her new hearing aids
Stopped taking BACLOFEN!
Has gained weight with some feed adjustments and weighs in at 20 lbs 11 ounces. She is 29 1/2 inches long.
Riley has also smiled, slept in her own home now for longer then her stints at CHOC and Healthbridge individually. She hangs out daily with her family and brothers. Gets daily snuggle kisses from Mason and frequent chats, kisses and hugs from Logan. Has daily snuggle time with mommy & daddy. Has frequent visits from grandparents, aunts/uncles, cousins and friends. Most importantly Riley knows she is home.
In the last 6 months Riley has come a long way from the intubated, PICC line toting, comatose baby that she was when she was first diagnosed. Little by little Riley is making progress. Little by little she is showing us all what she can do.
Last night Riley and I had a little chat. Through tears I reminded her of what I always told her at the beginning. Be strong, be brave and remember you're courageous. There were days those first few weeks that I would forget to whisper to her before heading home and I'd call Dave to have him put me on speaker phone so I could tell her. Daily I reminded her. We chatted about her journey last night and how far she has come and how insanely proud I am of her. I also told Riley that she is my hero.
6 months ago our lives changed forever. I am not the same person I was on December 25, 2012. Dave is not the same person he was on December 25, 2012. Riley is not the same baby she was on December 25, 2012. Logan and Mason are not the same children they were on December 25, 2012. In some ways our lives have changed for the better. I am in no way referencing Riley getting sick but rather, how Riley's illness has profoundly changed not only us as parents but, us as people. Riley's illness has changed many of those around her. How could it not?
I appreciate each day and don't take anything for granted. I remember to say I love you and make sure those that I love know it. I am more active and present with my children. I pause to take in moments that will forever be kept in my thoughts. I take an insane number of pictures (which my FIL will tell you I already did before). Those moments, those memories. I need them documented! I'm pickier when it comes to relationships. I'm more organized day to day. I long for the days that life wasn't this chaotic. (And trust me on bad days I revert right back to how I would react to any other bad day. I am human.) But, the Megan I was 6 months ago is not the Megan I am as I type this. And, in all honesty I like this Megan.
Having to have faith, hope and patience is hard and tiring. This extends from not only Riley's illness but, other important life events going on around us. Yet, I have remained determined that I had to keep the faith, had to continue to have hope and had to be patient.
This week two personal things happened that reminded me that faith, hope and patience do work. Things take time.
As I reminisce about Christmas Day and the time we spent with our healthy, happy, smiling children I realize how fast that can all be taken. And yes folks that means you only have 6 more months until Christmas. Did I know that before? Of course? Did I really know that? I often ponder this when I am alone. I always felt for people who experienced illnesses or tragedies. I've cried many a tear over family, friends and perfect strangers when their lives were changed in an instant. But, did I really truly, deeply ever really get it? Sometimes I wish I didn't but, I sure do now. At the same time, I now care in a different way when these situations arise. I've seen personally through the love and support we've received how taking a few minutes to do something for someone struggling whether it be a card or a quick text message or email how important it can be. I've learned to care more genuinely and express my care more openly.
My positivity the past 6 months has come from my deep rooted love for my children and my desire to do anything I could to make them better little people and in Riley's case to do anything I could to help her get better. The support we've had from not only our families and friends but, a larger community that is intertwined in our lives through work, friends and personal connections has helped my little family Fight On. Remaining positive and waking up each day knowing that I need to get through the day for my family motivates me. Reminding myself that I am not alone in this pushes me on.
Giving me the stink eye at today's doctors appt.
Waiting for the GI doctor yesterday
Working on sitting up in therapy on Monday
And just because her itty bitty feet are so cute in these!
With lots of love and gratitude to all of you that have helped us make it to this day,
Dave, Megan, Logan, Mason & Courageous Riley