the Vrouw: pink


Beyond perfect!

11/24/2015
So things the last month and a half have been kind of crazy around our house. As our Thanksgiving letter said, it was really the first we publicly said Parker has Agenesis of Corpus Callosum (ACC). I had gone back and forth over the last month and a half over whether or not to share our story. It became an internal struggle that I didn't know the answer to, insecurities of my own I didn't know how to handle, so eventually when it came time to write our Thanksgiving letter, something I was dreading, I told Clay to write it.
After the family letter was written, I couldn't help but agree more with Clay in the decision to share with friends and family. The overwhelming amount of love, support, fasting and prayers in our family's behalf, I selfishly now can't imagine being without.
As a parent I find it a fine balance between allowing your children to grow and develop at their own pace, versus encouraging your children, and sometimes pushing their comfort zone beyond what they would choose on their own. I was finding myself in this place with Parker. 6,7,8,9 months old she wasn't sitting up. I knew some children take longer to develop these large motor skills so I couldn't bring myself to push her more. I try to enjoy the moment my children are babies, I fear it goes too fast in the first place. So not trying to force the next stage, in the back of my mind, insecurities and worry about Parker's wellbeing began to creep into occasional thought.
10 1/2 months old, I found myself with Parker in front of a nutritionist telling me we needed to change Parkers diet. Later that evening when telling Clay of the events of the day with the nutritionist, I couldn't bring myself to agree and say her diet needed to be changed. I could feel something was going on, but diet wasn't it.
11 months old we were with my pediatrician for a wellness visit. Not meeting milestones like sitting up, rolling over, crawling, and ability to swallow progressive baby foods were all things on my mind. Growth for Parker in height was good, I had seen it in the change in her clothes, but weight, I hadn't realized, she had not gained a full pound in three months. Talking about lack of weight gain was that overwhelming moment people talk about, the feeling that I needed to pursue the concerns I had for Parker. Immediately. I needed to get aggressive to seek out further help for Parker. My pediatrician suggested we run the gamut on blood testing, urine sample, and meet with a GI specialist. A stomach renching Failure to Thrive was what I saw on the doctor notes... A long week later, the blood tests came back normal and the appointment for GI was set. September 24, 2015 we had our first and introductory visit to Children's Hospital Of Philadelphia (CHOP) as we met with the GI specialist. He recommended a referral to the CHOP neurology department just to make sure nothing was wrong, introduce Pedisure, and consider a swallow study with their feeding team thinking there might be a protein or something that her body is unable to absorb.
From September 24th to October 5th was the scheduled time between our initial appointment with neurology. I had the prompting one day to call and see if there had been any neuro appointment cancellations before the 5th. A great blessing and great surprise, there had literally been a cancellation made the phone call before me! We were now booked to meet with neurology October 1st. This time of waiting and the unknown, I found to be the hardest. It was eating Clay and I alive.
Clay unable to get away from school, It was once again me and the kids heading to the appointment. Our dear neurologist confirmed my concerns with lack of milestone accomplishment, lack of weight gain, swallowing difficulty, and added hypertonia/hypotonia. I was expecting it would be a referral back with some kind of GI issue and that we would be sent out the door with a clear bill of health from the neurologist. Instead of a clear bill of health, we were sent out the door with a clearly needed brain MRI.
Upon leaving our neurologist told us scheduling for an MRI was usually at least one to two weeks out. I made the phone call to the radiology department while we were making the now routine 35 minute drive home. Sure enough, the call just before me had called to cancel, so of course they could get me in the next morning at 8:00am. #Blessings!
Thankfully Clay was able to take off from school for the morning of the MRI. We had Vander to his friend Mali's house before 7am so he could spend the day with friends instead at the hospital. By the time we found the hospital building and were able to find the under ground parking my nerves were shot and my anxiety was through the roof..and the party hadn't even started yet! Parker did have to under go sedation for the procedure. We were told the actual MRI imagining took about 45-50 minutes, but including checking in, and sedation we would be in for a 5 hour experience. It was something I don't to ever do again. After the MRI was completed and they let us back into the room, laying there Parker was the most beautiful little sleeping beauty I ever saw. There was a peacefulness about Parker, about the whole room. I felt our spirits talking, Parker told me she was just fine while I couldn't be with her when she was away for the MRI. I stressed that. It helped me breathe, and come to a little perspective in life. This life is the Plan of Happiness. No matter our earthly circumstance, old, young, we chose for it, no matter what was going on with Parker, She chose for it, and as her parents we chose to do all we could to best help her make her best experience.
That day was a hard day. As we were pulling into the drive way at home, the phone rang. We were just getting home from the 5 hour day at the hospital. It was our Neurologist calling with the results of Parker's MRI. We turned off the car and sat in the driveway as we listened to the doctor tell us what she saw of Parker's brain. I don't really want to revisit the drowning rush of emotions I had. Clay handled it better than I did. Looking back, we were in such shell shock when she asked if we had any questions we were speechless. After we hung up the phone, Clay took Vander inside and I got Parker out of her carseat, cuddled her there in the car, and cried.
Our family is forever different, forever blessed. It changes the things in life we value, celebrate and define as important. It changes us as parents, and Vander as a sibling. Compassion comes to mind. I feel like since learning of ACC, it just helps me better learn and understand who Parker Ann really is. It gives me a glimpse of how Heaven must feel about the sweet baby I kiss good night every night.
So there we were, MRI results in hand, and it was October 2. We weren't even suppose to have our first neurology appointment until October 5th, little alone some kind direction and diagnosis. We recognized so many blessings through out that 3ish weeks.
We continue to see so many blessings in our lives as we begin this new journey. We have wonderful doctors, resources, and opportunities here in Philadelphia. Parker has PT, and OT 3-4 times a week. Appointments with medical specialists have slowed to only one here or there, not 3-4 a week. In that first month since diagnosis me and the kids attended over 22 appointments in 30 days. When I realized that, it was a moment for the first time that let me say, "...okay, here is your free get out of jail card for today...its alright that today is hard. Its okay to be real to myself that I am not handling it as well as I think I should. Or I understand and its okay that my 2 year old just had a major melt down in the store, we can cry it out together. He has been drug through the ringer and maybe doesn't entirely understand the changes, and what is going on with his sister or his parents..."
I realize days and things can be hard,but there are those moments and days that are sweet, and well worth fighting for. When its difficult and feel like I am losing to inadequacies and insecurities, The Lord wants me to remember, "I AM enough. Together my family is enough. Parker is enough". The Savior makes it so I can be enough. I have been called as a wife and mother, and I am enough to endure and happily bare up and fill that sacred mantle.
The best thing we can do for Parker at this point is work to build neuro plasticity and create new brain paths for the body's motor function. This is done through lots of various physical and occupational therapies.We are looking forward to Thanksgiving and Christmas breaks. Parker will be attending a 3 week, Monday through Friday, 3 hours a day physical therapy "boot camp" in Michigan. We are optimistic about little miss Parker's future. She is a fighter, and she works so hard to meet her therapy goals. We love her and are so grateful and blessed to have her part of our family!