Thursday, April 24, 2014

a STEP in the right direction.

Everyday we talk, we tell people what we need, what we want. Everyday we walk, if we want something from across the room we simply get up, move our legs one foot after the other, and we go get what we are after. These things that seem so simple, things that everyone learns at such a young age....these are the things that we take for granted. What if you were unable to tell someone you were thirsty, unable to voice that our stomach was upset. What if when you spotted your, let's say phone across the room and you wanted it- but yet you were unable to get up and get it- or even ask someone to get if for you? What would you do?

Zach and I see it everywhere. Our friends, our family, even complete strangers with their children....the kids are running, playing, wobbling here and there. They want a toy, they go get it. They want a drink, they yell and point "momma drink!". Yet here is Blake, the poor boy can't just get up and go get the ball in the corner of the living room, he can't ask for his sippy so he can take a drink. These simple tasks that are easily learned are things Blake struggles with everyday. And as his mother, his father it's something that breaks our hearts. It's so hard to see the frustration of being unable to communicate. The frustration of not being able to just simply get what he is after. These frustrations usually lead to tantrums of the umpteenth degree...throwing foods clear across the room because that's not what he wanted, or literally chucking his drink clearly at our heads because that too was not what he was requesting. It's frustrating!

We all picture this life after your first child. The life of wonder, and excitement, and play! We never picture a life of therapy, and doctors appointments, and drawing up medications three times a day. We wouldn't change our lives, for it has lead us to be thankful for things that we so normally took for granted. We take pride and get so SO excited over the little victories! It doesn't, however, change the fact that we wish things were just a little- okay ALOT easier for Blake. We wish it didn't take up so much energy to do life's most simple tasks.

We are getting much closer to independence these days though. Today was a BIG day- it didn't go quite as I had made it up in my head but it's still a "step" in the right direction! PUN completely intended.....

Today Blake was introduced to a gait trainer. It is a device to help teach Blake to walk. We have waited patiently, we have worked very hard on getting Blake to a point of independence...being able to crawl, pull up on small things, sitting, and working getting up on his hands and knees. These were all the things Blake had to master before getting to a point of even discussing teaching him to walk. These are the things we do everyday! We stretch, we stretch some more, we work therapy into play everyday! And today we finally get the big pay off!......unfortunately, we didn't take into account that Blake always....ALWAYS.....hates all things new in therapy! So we will count today as an introducing day and really if you minus the constant crying, and terrified look in his face Blake did amazing! He took steps on his own, he moved forward and he held his weight relatively well! We will take it as a win- just maybe hoping for no tears or tantrums the next go around!

Monday, April 21, 2014

Time for your Check-up

Blake's 2 year check-up time! Blake came in weighing a small 21lbs 9 ounces...we are getting there we've been stuck in the lower 20's for quite a long time now. Still not making it on the growth charts....his height however he is in the 10th percentile for his actual age at 33inches!

Blake will be meeting yet another new doctor at the end of this month, a Pulmonoglist from Riley. Blake has had an area under his right chest that concaves in for what seems like forever. So for our peace of mind we are having it looked at, hoping it is nothing! Prayers would be appreciated!!

You can see the area slightly below his armpit.

We have also over the past few month been taking Valuim for his cerebral palsy for muscle tone. It has been a GREAT help. Zach and I were very hesitate at first to start the medication worried it would hinder his progress by Over relaxing his muscles. However, after many discussions weighing pros and cons we decided it best to try it....and if we didn't like the effects we could stop the medication! However, since starting it, Blake uses his left hand much more, he is able to pull up on his toys, not perfectly mind you, but pretty darn good! And hopefully now that we have mastered hands and knees we are hoping to start gait training with a Walker this week!!

2nd Birthday

A few weekends ago we celebrated Blake's 2nd Farm Birthday! It was a complete success with beautiful weather and despite missing a special little boy we felt an overwhelming sense of love all day!!! Happy birthday sweet boys!

Tuesday, April 8, 2014

Forever changed.

1 year 11 months and 26 days, 727 days ago.
That's how many days I've lived without you.
That's how many days it has been since I held you in my arms.
That's how many days it's been since I felt the absolute worst pain in my life. It was a deep, sharp pulling tearing, in my heart.
You would be turning two on Friday.
I am usually strong. Forgive me, but today I can not be. It came to me out of no where. It crept up without warning. Without prompting. That ache....that pain. It's back. That excruciating tear, this deep hole literally dead center of my chest. It's like you see in movies, when peoples lives flash before their eyes. All I see when I close my eyes is you. You in my arms as I pleaded to God to not take you. Your Daddy holding us both. I bargained. I begged anything...I would have done anything to not have to let you go. I close my eyes and see that monitor. Your heart rate slowing. I remember that numbness that followed. That deep sense of losing myself. I was no longer me. I would never be the same. That bright eyed, super talkative, maybe a little too hyper self that was always smiling. I was sure I would never be that girl anymore. She was gone. Forever changed.
But....surprisingly. With time....
I laugh. I smile. I still say super silly jokes. I'm still really talkative, and maybe a little too hyper. Most importantly I genuinely feel happy. I am however, forever changed. Forever a different person. I will forever ache for you. I will forever wish I could celebrate every birthday with you. I will forever have this pain in my chest. It's been there for 1 year 11 months and 26 days. It's been there every one of those 727 days. That pain is a part of me. A constant reminder, that I loved someone so much, that my heart aches for him everyday. Permanently a part of me. You are mine. My very own, and I miss you so much! Happy early birthday my dear. Your mommy loves you.

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