Of MRIs and blessings.

-
It's been a busy few days of phone calls, paper work, vomiting and life. Case is still struggling through the night and into the morning. Dan has been working out of town and commuting 2 hours round trip making the days a little longer. Don't get me wrong, I'm not complaining and feel more blessed then usual. It's just been hectic here and tonight I prepare for a long day at CHP tomorrow. Big guy will have his first MRI (he'll be under anistisia for the whole thing) then we'll sign papers and give blood for the Whole Exome Sequencing test with genetics. It will take up to 4-6 months to get results. Tomorrow is a day of firsts and familiars. We've been at this for awhile and yet we're starting a new "adventure". We have no clue what kind of things they'll find with the MRI or the Whole Exome. This. Is. Out. Of. My. Control and a bit out of my comfort zone but it's part of the journey. I'm along for the ride. As I rock him to sleep (right now) I feel him breath and I feel his special. He's different. He's strong, a miracle and instead of fighting our very special journey Dan and I have chosen to embrace it and in turn we are greatly blessed. So, tomorrow as you push though your busy day think of this special guy and whisper a prayer if you'd like as he takes a new turn in his journey.

Comments

Post a Comment

Popular posts from this blog

About Case.

-
Image
Let me tell you all about the boy that is the inspiration behind A Very Special Family. Before Case was born we knew he was sick. During the routine "gender scan" ultrasound they found a "spot on his kidney and a spot on his heart." They referred us to a high risk OB about an hour away from our home. In order to not drive myself crazy, I decided to tell myself it was nothing in the days counting up to the appointment. It was something. It was a lot of things. I'll never forget that day, the day I heard the laundry list of birth defects, health problems and complications my sweet baby had. I remember my world starting to blur. That day, in the OB office right after I was told our baby was sick I don’t remember much but I remember hearing the word “Grace”. It was clear and unmistakable. At the time, I thought the baby was a girl and that was to be her middle name. Once we got home from that appointment, I looked up the word Grace. Blessing and
Read more

About Case.

-
Image
Case is our fourth child. He has 3 sisters. At 22 weeks pregnant I had a routine ultrasound. The tech seemed calm, ordinary. She said we were having another girl. We named her Parker. "She" was healthy. Typical. Fine. A week or two after that "normal" ultrasound we got a call. There was a spot on our "baby girl's" heart and one on "her" kidney. Not a big deal. At about 25 weeks of Pregnancy, We had a second level sonogram about an hour away from our home.  I was told our baby would be different. Very different. It's limbs were way behind in growth. It had heart problems, kidney problems, and was small. Very small. The doctor strongly suspected Down syndrome or Trisomy. He did an amnio. I cried. He told me this was not my fault. I was doing everything I could. The baby was just made different. Two and a half weeks later, I got a call. I was there, in that hotel. On a mini "getaway" with the family. The doctor called an
Read more

I'm a Terrible Soccer Mom

-
Image
It’s true. I am a terrible soccer mom. I don’t like the bugs and the porta potties. I dread spending a good part of the evening or Saturday morning sitting in a muddy field listening to my kids whine that they are hungry and bored when all I really want to do is put my sweatpants on and drink wine on my couch. I’ve successfully avoided volunteering for the mandatory confession stand job for an embarrassing amount of time. And worst of all....I’ve MISSED games do to work and (usually) don’t feel guilty about it. Okay...before you start thinking I’m a terrible mom (too late?) let me explain...I love my kids. I love them so much my heart could EXPLODE. They are smart and funny. They are kind, considerate and helpful. And mostly, I really enjoy spending time with them and even though I’m a terrible soccer mom, I love watching them improve each season. I love watching their faces when they try to pretend they aren’t over the moon excited about the goal they just scored or the assist they ju
Read more