Tuesday, May 12, 2015

Blake's in school!

Blake started preschool on April 13th and started going Monday & Wednesday only for a few weeks then started full time Monday-Thursday 12-3! So far so good.. There are a little hiccups here and there and mommy and daddy sure miss him when he is gone....but we think being around kids his age will help him out tremendously in the end! Only one more week until summer break though!

Blake's first day at school he was so excited and it didn't phase him at all....

Mommy on the other hand- thank god daddy drove!

From my daily pics you can see I don't think he minds school days!

But mommy is counting down the days until zoo days and parks are in our future! ☺️ summer break can't get here soon enough!

Belated birthday post

So it's a bit belated....by a whole month....but here is some birthday facts about my BIG three year old!

Blake was born weighing only 1lb 6oz and 12 1/4 inches long:today Blake is 27 lbs and 37 inches long

Blake started sucking his thumb when on a breathing machine at only a few weeks old: that's a habit we haven't broken-he still does!

Blake was always making funny faces in the NICU: now-a-days he smiles and cheeses most of the time!

Blake loves Mickey Mouse, playing outside, and playing animal sounds on the iPad.

His favorite foods are donuts, pizza, bananas, strawberries, and chicken nuggets with barbecue sauce!


Wednesday, April 8, 2015

Three years approaching

I cannot believe its almost been three years....
Three years ago today I was in the hospital on bedrest. Watching my babies heart beats on the monitor, and IV's running. Zach bringing me whatever new craving I had at that moment. In a few short days marks the my babes 3rd birthday. Its so overwhelming that its been almost three years that I gave birth to my sweet one pound babies. 

Thursday, April 2, 2015

Memories of

Sometimes loss is so encompassing. It's overwhelming. All consuming. It strikes out of no where with out warning. This deep intense pain that aches so much it feels as though your heart is literally ripping into two. I find myself revert back to the same thing year after year, expecting it to be easier, and shocked when it's not.

I work around death. In the ICU it's too often an occurrence. My heart breaks for people, I truly feel pain as I comfort the family, I shed true, honest, heart felt tears with you. I see it all the time, but as soon as I come home I shut it off. I tune out the sadness because to continue to think of it is just too hard. It brings up suppressed memories, the memory of my own loss. I couldn't breathe, I couldn't see, true heart break took control of my body as I sit holding my child as he slowly slipped away from this earth. I had such a hard time falling asleep that day, how could I sleep, how could I close my eyes and say goodbye to the last day I held him. After much fight, exhaustion took over my body, I fell to a deep slumber. And then I woke up. And then as my body awakes, and I slowly re-enter reality....in a quick instant, just a split moment, you forget. And then, BOOM, like a flood of memories, it's back. I can almost close my eyes, relive that moment, every time. It's almost three years later, and I still wake up, and every time I think it gets easier...as soon as I feel my heart being sown back together...the ripping just starts all over again. You have to keep on being a parent even though you don't have that child anymore. I know Blake has a sibling but when I'm asked if Blake is an only child, my only response can be 'yes'. Because in reality, Blake is the only child in our household. Not everyone wants a question they expect to be one worded answer, to end up taking up 30 minutes of their time. They just need yes or no.

So I stick with the fact- yes Blake is an only child. But it feels unjust to say that. It feels so wrong to just eliminate or leave out that you were and still are his sibling. Not just his sibling- his other half- his twin. It feels....heartbreaking, painful, and betraying. I once held you, and I swore I wouldn't forget you. Yet, here I say yes as if you didn't exist.

As your birthday draws near, the weeks become more difficult. Each day becomes more suffocating- the loss creeps back in, the sadness pulls closer. The memories and reminder of loss loom. I'll get through it...like I do every year. But the ache is there and frankly......

It sucks.

Wednesday, March 25, 2015

Cerebral Palsy

My son has cerebral palsy. But, what exactly is cp or cerebral palsy?

CP is such a broad diagnosis meaning a disorder of movement, muscle tone and posture.....
RIGHT?!?! That can be so many things! It's such a broad diagnosis encompassing so many things it's hard to compare one CP case to another. One thing I know for sure is once you have cerebral palsy there is no cure, no remedy, no medications to make that diagnosis go away. It's a forever sentence.

Cerebral Palsy has so many different types, functions, disabilities....that the diagnosis alone gives a 'planner' like me anxiety to the max! I want to know will my child walk, what will his cognitive level be, will he do this, will he understand that.....but Cerebral Palsy is not the same from one person to the other. What's physical and cognitive for one is just physical for the other. What one child does the other child may not...and so on and so on. Blake will have days where his muscles are loose as a goose (I've never really understood that saying- are geese loose?) anyway, back to my point and then with a swift change in the hour Blake's muscles may tense up and become as tight as can be. Where one day Blake may stand tall, and straight the next day his right knee may bend inward. From day to day it changes, and from year to year we see his disability show.

Although cerebral palsy has no cure, with treatment, therapy and plenty of exercising and stretching on a daily basis we can improve Blake's capabilities. We began therapy Occupational, physical and speech with Blake starting as early as 6 months old right after getting home from the NICU in hopes to see him thrive and have the best chance at a 'normal' life.

Blake's disabilities stem from a brain bleed he had as a preemie and primarily affect the left side of his body. His left arm and leg are very tight and rigid at times but he has learned to use his tone to his advantage by helping with stability and grounding himself. His hips and hamstrings have some weakness that others my not have. It's because of this change in tone that we see that as an almost three year old he is still unable to walk unassisted, sit balanced by himself without being in that dreadful "w" or frog like sitting, and he does not speak as much as a normal child.

You may see Blake at times "scissor" his gait, or drag his left leg behind but for a child that was thought to probably NEVER walk or talk or eat unassisted id say we are doing pretty good!

Blake is able to pull up to furniture and walk the length of our couch. He is a monkey through and through climbing on top of a toy box only to climb onto our sofa. He can yell out momma and dada and oooooohhhh- he communicates what he needs and surely let's us know what he doesn't want!

Blake can play on iPads, with toys, choo choos and cars, and puzzles, looks at books and is all and all a normal crazy, loud, playful happy two year old about to turn three. However, he has cerebral palsy- we don't know what this means for his future or what or if there will be any cognitive disabilities. We don't know if he will eventually learn to walk alone without a walker or cane, or if we will eventually need a wheelchair. What we know is that cerebral palsy does not define him....it's just something he has. Anyone who knows Blake doesn't recognize him for his disability but instead as a strong, playful, and an AMAZING child!

Thursday, March 12, 2015

March for Babies 2015

Today my husband and I are writing to inform you not of Blake's progress or his daily doings but rather are writing to ask for you help and bring light to a foundation very close to our hearts. The March of Dimes is a charity/foundation that help with research to help improve the health of babies. One of the biggest contributions they have done that directly effected the path that Blake went down in the NICU was their research done on surfactant therapy. Surfactant is a chemical found in all newborns that allow the babies aveoli to stay open and promotes gas exchange. However, babies born prematurely do not produce enough surfactant on their own that the lungs stiffen, and aveoli are unable to stay open causing lungs to collapse, gas exchange to stop, and eventually leading to death. After over 12 million dollars provided by the March of Dimes Surfactant therapy was approved and is now used on all premature babies to help provide the chemical that their lungs are just too small to produce. Blake received several doses in the first week of his life and is a big part of why he was able to make it through the first few crucial weeks. The March of Dimes has also helped to fund many of the therapies used today on mothers during their pregnancy to help get them to full term, as well as other well known medical procedures, medicines that help lengthen a babies life.

This foundation is such a big help in fighting for the small babies that just don't have the strength to do it themselves. Our team "Team Hargis" will be raising money in memory of our son Conor and in honor of our little fighter Blake.
Its not about which team your on, or which team raises the most money. What it is about it helping!
We have several friends,who themselves, are raising money for their families. Please take the time today and donate every dollar counts. For every dollar raised 76 cents is given directly to programs and research that help a babies brain, spine, lungs, heart and eyes. Please visit our site for Team Hargis as well as our friends fighting for the same cause and DONATE!!


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