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.


Friday, August 21, 2015


Blake's procedure is over here at Riley, sedating him turned out much more difficult than expected. After three tries the nurses were unable to get an IV to use for sedation. The ICU doctor opted to give him a shot into his muscle of a paralytic to keep him from moving during the botox injections. The medicine they needed to use takes longer to wake up from than the IV sedation that was planned so he's being monitored a little longer than expected.

After the medicine took effect- Dr. Sobus used ultrasound to inject botox into Blake's left arm bicep, and pronator. And both legs in his hamstrings and adductor muscles. They said the botox should start working within 24-48 hours then peak at 2 weeks lasting as long as 3-6 we shall have to wait and see how the results are for our Blakers.

Blake's waking up now very slowly but surely. Everything went well- the first movement we saw from him was him waving "bye bye" to the RN- id say someone wants to go home ☺️

Zach Hargis and I want to thank everyone for all the positive wishes and prayers!

Tuesday, August 11, 2015

It's a go.

So as time get closer I suppose I should give updates so that we can start requesting prayer request and positive thoughts now! Next Thursday Zach myself and Blake will be making the drive to Indy and Friday morning Blake will be put under sedation for a procedure for his cerebral palsy. Botox everyone has heard of- you get it so you can look like this.....

However, after many years, many alternative therapies have been found with the use of Botox. One of which is used in cerebral palsy patients to help with muscle stiffness. Anyone who has met our sweet Blakers knows his left arm is quite an issue. His thumb stays tucked in...

He is able to use the spasticity to his advantage when crawling, and moving but when asked to use his left hand to grab something he has a difficult time to extend and open- to grasp and use it in any way for fine motor skills. You will notice in pictures he tends to keep it in a stiff position when standing.

He uses only his right to eat, wave, play, etc. this is not a right dominate normal development- we work very hard with therapy and daily stretches to get use of his left arm.

Blake also has issues with his legs. Although not as noticeable or as severe as the issue with his left arm- you know he doesn't walk, he is able to pull to stand, and walk around furniture but as he grows and gets older we have noticed his knees turning inward in standing- which is a trait seen in some cerebral palsy, but we are seeing in Blake due to tightness in his hamstrings, and his use of his spastic (tight muscles) in his left leg. Blake tends to use his spasticity to his advantage- but in turn has cause weakened muscles now in his right leg- due to him placing all his weight in his "tight" leg. (Clear as mud right?!) Blake's walking in his gait trainer has also suffered this summer- be it because of his muscle issues or out if pure three year old tantrums I'm not sure but he completely hates it now. I think it's more because he knows he can get around crawling way faster and much easier that he then in then gets frustrated when we force him to walk. We are hoping though that after the procedure he will progress in his walking training.

So because of all these issues next Friday Blake will be getting a total of 6 injections of Botox. Two shots in his left arm- in two muscles. And two shots in two different muscles in both legs.

There are of course adverse side effects that may result in the Botox- one of which being the muscles becoming too flaccid. If this were to happen in his left arm, it wouldn't truly effect too much. It would actually allow us to stretch the shortened muscles and I believe he would still be able to get around and do daily activities as normal. HOWEVER, then there is he worry of him becoming too flaccid in his legs...something I'm terrified of. This is, of course, WORST CASE SCENARIO. We worry if it's too much he may lose some of his mobility- good news for that is botox is temporary and effects usually last only 3-6 months.

Now, best case scenario. It has been shown in cases similar to Blake that botox with paired therapy and stretching can actually help to progress development! We are keeping our fingers crossed that this is a positive procedure for Blake and helps with mobility and development and we could use all the support we can get! Any procedure, test, or basically anything medical with Blake is always worrisome for this Mommas heart - and really anything with sedation always makes my heart drop to the pit of my stomach- so any prayers and positive vibes sent our way will be much appreciated!

Keeping positive thoughts for our miracle Blakers! And let the count down begin! Only 9 days to go!

Thursday, July 23, 2015

Summertime fun

Summer time shenanigans are in motion at the Hargis household! Forts, and swimming and playing I things we prolly shouldn't be! I can honestly say that Blake is the biggest blessing we have ever had in our lives, he makes our lives so interesting, full of love and..... SO MESSY!!!

Blake and I took it upon ourselves to build a fort one rainy boring day!

I think it ended up pretty great!

Blake and I also like to enjoy the sun [ps- Blake is not laying out- I promise! He was getting sunscreened and was cracking up!]

I turned my head for two seconds! And Donuts....DONUTS EVERYWHERE!

Blake loves playing in his water table, and the mud. Lots of mud!

Sunday, July 12, 2015

Disney Trip

Hello strangers! The Hargis clan has been MIA for a while, and so now its time to do some major catching up! I will try to be doing so over the next few weeks, I should be able to update our friends and family from far away the news from Blake's first Cerebral Palsy Clinic visit up at Riley, our 3 year check ups, and milestones we have reached since my last blog post! However before I hit you will all the serious health discussions and information......lets talk VACATION! So for a year now we had it planned but it is official Blake has met.....MICKEY MOUSE! Zach, myself and Blake along with my mother, sister and step-father made the long drive to Orlando and tackled a very long, VERY hot, and very exhausting trip to Disney World! But seeing Blakes face and reactions to the parades, fireworks, and disney characters made the trip so worth it! Here are some of my favorite pics to share of our time at each park....

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