One Helluva Week…

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Olivia has been experiencing full body spasms and severe reflux episodes this week. My tears have dried, but my heart is still carrying heaviness. Watching your child battle chronic pain is the absolute most unimaginable helplessness a parent could ever experience.

This week, I have held my nine year old child in my arms, gently rocking her, as she sobbed. As her eyes searched mine in a desperate plea to alleviate her pain, I broke and sobbed because the medication I gave could not numb the pain, the midnight stretching and massaging of her tightened muscles would not sooth, nor did the tender Momma cuddles bring reprieve. I cried harder as her little body wretched with each agonizing burst, and there was nothing I could do to soothe her pain.

My beautiful sunshine girl with a smile that could take your breath away, lives with chronic pain every single day as a result of Cerebral Palsy. Most days we can help her concur it, but days like this last week, these days the pain overcomes our brave fighter until she passes out. These are the days I hold her wrapped in my arms, her forehead wet and cheeks flushed from fighting through the pain. Her eyes close for a moment, as she folds in towards my chest and I wipe her dampened bangs from her eyes. There is little I can do during these episodes, but I know when they end, in my arms is where she wants to be.

Exhausted, emotionally defeated, and utterly shattered. These are the days I question why my little girl must endure so much. From the moment she breathed her first breath, Olivia has lived a life with chronic pain. Many who know her, see a child with a bright, charismatic personality and a smile that can take your breath away; and all of this is true, however, she also endures more than any of us could ever understand.

As I type this, I still sit at her bedside watching her sleep. Finally, her body is calm and hopefully will rest. She is drained. I’m drained. I know I should go to bed, but my heart needs to be near her longer. As she sleeps peacefully (for now), I cherish each calm moment she can dream. I pray that tomorrow will grant her grace.

It’s Gonna Be A Long Night

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It’s going to be a long night. How can I tell? Well, Olivia has only been asleep for about an hour and has already woke up with reflux pain.

For children with a Gross Motor Classification of 5 with Cerebral Palsy, or severe CP, in laymen’s terms; severe acid reflux is common. 

Because Cerebral Palsy affects muscle function and control, the soft muscle that lines the digestive tract and basically the entire gastrointestinal system, acts abnormally causing everything from digestive pain, vomiting and constipation.

Olivia has been on medication for GERD  (gastroesophageal reflux disease) since she was about a year old. The medication does little to control her vomiting,  but it is suppose to limit the amount of acid that can harm her esophagus.

This past February Olivia underwent a surgical procedure to have a G-tube inserted through her stomach wall. The hope was to get further nutrition into her, so she could gain weight. At the time of the surgery, she had been diagnosed as “failure to thrive”, meaning she was severely underweight for her height and age. Her difficulty in gaining weight has forever been associated with the severity of her reflux. Before the G-tube, it was a constant struggle to play “catch up” with her calories after an event of excessive vomiting. Once the G-tube was in and we began tubal feedings, we began to see great improvements in her weight gains. Within the first month post surgery, Olivia had gained four pounds! Previously that would have taken almost an entire year to see those results. You can imagine our elation to see our little girl thriving.

This past month Olivia underwent another surgery to have her heel chords released.  The last three weeks we noticed a significant spike in her reflux episodes resulting in excessive vomiting. After contacting her pediatrician, we decided to increase her dose of reflux meds. Within a few days the vomiting subsided and Olivia began sleeping through the night again. This was a huge relief on so many levels, however my husband and I suspected a possible weight loss in her and requested she be weighed. In those three weeks, Olivia lost one pound.

One pound doesn’t seem like much to most, but for Olivia; one pound could take us months to get it back on her.

To witness her in so much pain and not be able to stop it, is the worst situation a parent can go through. Together, she and I have spent many sleepless nights trying to ride out the reflux storm. Nights spent cleaning vomit off of her and her bed clothes, walking with her in my arms; rubbing her back and nights where the reflux is so painful, her little body becomes so tight and rigid that the spasticity of her muscles causes her entire body to go into a complete spasm, bringing with it more pain.

And yet through it all, this is what I wake up to each and everyday….

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I am marveled by my daughter’s incredible strength and perseverance. For a child who endures so much, she loves life and brings with her so much happiness and joy!

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She’s my inspiration….