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'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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