Saturday, December 26, 2015

Merry Christmas!

We wanted to take the time to say Merry Christmas to all our friends and family and we hope you have a wonderful start to the new year! We know that this coming up year is going to be a doozy, lots of changes and Blake is turning 4! CAN YOU BELIEVE THAT?! 

Friday, November 6, 2015

Thankful & Blessed

It's been a long time since I've felt the need to write, when emotions are too high and words seem to be building up inside... today those words need to come out. I find myself as the year goes on realizing how much I find myself looking for something greater, that if I change this or move that maybe I could find that greener side of things I always search for. I rarely take the time to be thankful for the story I have been blessed with.

I work in a cardiac ICU, I see mothers, and fathers die, brother, sisters, husbands and wives. I watch as children have to tell their parents goodbye, I see parents have to tell their children goodbye- and had I not had to hold my Conor and kiss his forehead and tell him to be with God I wouldn't understand how to be the nurse they need during that time. I wouldn't know how to find that compassion, that understanding. I stand holding loved ones hands, I hug them and I cry with them- and then I come home to my perfect family. To the loves of my lives and still find myself searching....

I read daily on social media that a friend or even a complete stranger is dealing with death of a loved one, or is standing strong facing illness themselves. And here I am in my house healthy, with my son- who, yes, has cerebral palsy but is alive and actually pretty healthy comparatively... And I'm wanting more...
I am truly way more blessed than I accept on a daily basis. I live in a beautiful love story, and only in the past few days have I began to try and be as thankful as I can be for it! I once wrote in my blog for prayers, for God to grant us with the privilege of being parents to Blake, and begged for the honor of being his mom and watching him grow. I remember asking for him to bless me with acceptance and understanding if that however was not his choice for us. Then once I got my prayer answered, I forgot to be constantly truly grateful for all the wonderful things God has graced my life with. Don't get me wrong I am thankful everyday for Zach and Blakers and even my crazy dog Aussie- but I forget to actually take a breath, look around me and truly just soak in the wonderfulness that IS my life. I sometimes forget to get off my phone, or out of my head....and just embrace life.

I found the love of my life at the age of 15, he has stood by me through all the angst of growing up. From the overly enthusiastic teenage Katie, to the party goer college Katie, to the "id rather stay home, mom" Katie. As I think of our love story it is what movies are made of... Boy meets girl, girl meets boy- they date- they have trials and they overcome them to end up in marital bliss.... But ours continues after the movie ends... And our true love story only blossomed more when we brought children into our love story. That is what makes our story even stronger and more romantic than any title you can imagine in your head. Our story didn't have the typical happy new parents beginning, it had loss and fear tangled into it. But the romance in it is the way we held on to each other despite the stress, despite the loss, the anger and the depression.

I remember one day I was outside, I had wanted some fresh air, and Zach came outside to check on me....he held my hand on the bench outside the women's hospital. And as I sat there, zombie eyed, in disbelief, without words only a day after we had just lost our son, he knew we didn't need to talk, we just needed to sit there with the sun hitting our backs as we held each other's hands. It's these moments I find truly romantic.

The romance in our love story, isn't always story telling- it is filled with boring laying on the couch listening to a new music album while snuggling, it's laughing uncontrollably over some stupid 90's movie that I'm still not sure is "the best movie ever", and our romance even involves the days I lose control of my emotions and just cry into zach's shoulder as he holds me close.

The day my love story surpassed "Notebook" worthy romance was the day we brought Blakers home. The day we were blessed to have this child by our side was the day I should have stopped looking for the greener side and realized I'd reached it. I was standing in it.

I want to cherish all the times that blake will grab my face just to turn it to look straight into his eyes- just so he can show me what he is finding so funny. I want to remember the sound of his laugh when I come home from a long 12 hours shift. I want to remember the way he points to his daddy when Zach walks in the room and then just smiles ear to ear.

Yesterday was a prime example of just taking a deep breath and instead of getting frustrated just enjoying the moment. And it turned out to be one of my favorite days. Blake was a complete fuss butt yesterday, he cut his therapy session short because he would not stop throwing a tantrum- he was just not having it. And then when I took him to school at 12, it wasn't even 5 minutes after getting home that the school nurse called saying he was inconsolable. So I calmly made the decision to just go ahead and go back into to town and get him. I knew Blake wasn't sick, he wasn't hurting, and that had I just said you know I really think he should try to power through the day- he could have probably stayed and finished the school day out.... But this was what I prayed for. I prayed constantly in the NICU to be his mother, to be his rock, to be able to spend time with him...AND, so I picked him up. As soon as he saw me his tears were gone, he smiled ear to ear and we left. We came home, and Blake was not sick. And Blake was not hurting. And Blake and I had one of the best mommy and Blakers day we've had in a while. We danced, we played and we snuggled. And for that I am thankful, and my grass just keeps getting brighter green!

Sometimes you just need to take a moment and close your eyes... Cherish your love story, because you never know how green your grass is compared to someone else.

From my family to yours remember to fall in love with the everyday love stories!

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!

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