Wednesday, September 30, 2015

Beautifully Scarred

This is my son, Blake.

At first glance he looks like a normal, happy three year old.
From a glance you would never know the trials he has been through in his short life. As the clothes are removed we can count all the times he defied all odds....

1) horizontal long stomach scar. Necrotizing Enterocolitis- removed 8cm of his small intestine at 2 weeks old- weighing only 1lb 1oz.

2) small puncture scar above stomach. Eternalizing shunt after shunt malfunction.

3) three incision scars on neck. Each scar from shunt malfunctions.

4) long old skin tear scar on right arm- due to prematurity and fragility of skin.

5) another skin tear scar left arm

6) PDA heart surgery scar- done at 2 months old.

7) central line scar on chest.

8) old ostomy scar right side stomach.

9) shunt scar on the back of his head little graphic but this was the scar right after a malfunction in May 2014-

And now... You'd never even know it was there unless you shaved all his hair off

Blake has a variety of scars scattered across his body, each have a story, and each prove this child is made of steel! These scars, all different sizes, different shapes- all caused from different obstacles Blake had to overcome- these scars are beautiful reminders of all we've lived through. These scars are my constant reminders that MIRACLES are real and not just wishes.

"Some of the most beautiful people are beautifully broken"

Thursday, September 3, 2015

Post Botox

A day in the life.

Since day one back at home from Riley- Zach and I have dedicated ourselves to make the best of this botox. To make the best, we have chose for Blake's physical therapy to be upped to 2 times a week, while his Occupational, and Speech therapy come once a week. Now that school has started back up he also receives PT, OT, and speech there weekly too! (Talk about making up for the two month stretch without therapy!)

We try to stretch every morning, and we practice cross leg sitting, long leg sitting everyday. Blake doesn't mind too much- he gets to watch Mickey during all our stretches and exercises.... And we all know how much he LOVES Mickey! We try our best to get the best results for Blake despite it being somewhat repetitive. Here is a look at some of the stretches we do.

To give an idea of just how lose his legs have gotten post botox here is a picture showing the stretch and flexibility we have gained in his adductors. Where the top picture I had to apply pressure just to open his legs that wide- the bottom picture you can see he can open without any help at all. This makes holding him feel very odd because he always used to grip our sides very tightly with his legs.

The left hand is better- not as noticeable a difference as his legs but you can notice a slight opening during rest in the below picture.

Blake's left hand does not work the way his right does, he has some issues with grasping, pointing and dropping objects. And most of the time his left hand is truly just a stabilizer. Although he can function without using his left, it is important to try and gain these simple tasks...we have been working very hard at grabbing objects and dropping.
Here is a short video of Blake's left handed skills.

We have also been really working on walking, which is honestly one of the most trying things to work on. Because Blake can get everywhere with crawling he has no interest in doing something that is harder work for him! (I mean who would want to do the harder thing?!?) But we will power through it and practice practice practice! For I can not explain to you the dreams I have for one day this boy to come running to me!

Here is a short video of Blake's walking in his gait trainer.


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