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So many times this week as I drove back and forth home from the hospital I wanted to dial my parents number to have my Mother answer. . You see it did not matter what time of the day or night it was she would always be there to take any of her kids telephone calls. . We would talk many times during car trips to help keep the time passing especially late at night when I just wanted to be home in bed. This week I really missed her, today especially as Five years ago we All celebrated her last Birthday here Earth side before she flew with the Angels. 🌺 . Happy Birthday Mom...Love you More than ever and Miss you every minute. ♥️ . . . . #lovemycrazybigfamily #mom #happybirthday #heaven #missingyou #mominheaven #cancersucks #largefamilylife #momlife #daughters #angels #hummingbird #faith #grandma #blessed #love #mommyunplugged #momblogger #momblog #momof11 #medicalmom #grateful #blackandredlicorice #partyof16

I cried as the nurse wheeled him away for surgery this morning. Knowing he had been down the long surgical hallway many times before....this morning felt different. My heart hurt for him. Today's surgery felt like it had been on repeat more times than I wanted to remember. . Another recovery period to go through, another period of waiting to see if this surgery was a success, praying his little body does not breakdown even more. . Plus, I cannot forget how he looks at me for reassurance with his big beautiful chocolate color eyes. I am his MAMA, his advocate, his guide, his protector, his safety net but more importantly his comfort of arms. . I tend to hold steadfast in my emotions when trying to ensure everything is happening along with knowing that I advocate like nobody's business for my family but then there comes times like today when I feel like I got hit with a ton of bricks and the tears just roll out 😭😭 . . . . . #lovemycrazybigfamily #mamabear #medicallycomplex #vpshunt #luckyfinproject #limbdifference #thisismotherhood #cerebralpalsy #epilepsy #crps #momlife #encephalocele #disabilityawareness #largefamilylife #portacath #twins #specialneedmom #radychildrenshospital #momofmultiples #adoption #amnioticbanding #adoptionjourney #momblog #motherhood #momblogger #medicalmom #momof11 #mommyunplugged #blackandredlicorice #partyof16

The old wives tale of "a watched pot never boils" is SO TRUE! . . His team of doctors canceled his surgery this morning hopefully to find a better solution to his ongoing issue but as the day has passed watching and waiting; results are not what are to be expected. Of course his little head has yet to spring a leak....yet because we need him too now. . Interesting enough I feel his head...I just want to pop it with a pin like a balloon. That is how squishy it is with fluid. Then imagine a tea kettle just waiting for the whistle to blow....😢😢😢 His little head in a nut shell. . All in his time...for now no answers but his little body has much more than just a #csfleak going on. Minute by minute and breathe! . Thank you everyone for your thoughts, support and prayers for his team of doctors and our family. We are so grateful and blessed for each and every one of you! . . Much Love and Many Blessings ❣️ xoxo Julie . . . #lovemycrazybigfamily #picu #medicallycomplex #vpshunt #luckyfinproject #limbdifference #thisismotherhood #cerebralpalsy #epilepsy #crps #momlife #disabilityawareness #largefamilylife #portacath #twins #specialneedmom #radychildrenshospital #momofmultiples #adoption #amnioticbanding #adoptionjourney #momblog #motherhood #medicalmom #momof11 #mommyunplugged #blackandredlicorice #partyof16

This is how I Roll when doctor's are trying to figure out what is going on with my Head..🤯 . . . . #lovemycrazybigfamily #picu #medicallycomplex #vpshunt #csfleak #luckyfinproject #limbdifference #thisismotherhood #cerebralpalsy #epilepsy #crps #momlife #disabilityawareness #largefamilylife #portacath #twins #specialneedmom #radychildrenshospital #momofmultiples #adoption #amnioticbanding #adoptionjourney #momblog #motherhood #medicalmom #momof11 #mommyunplugged #blackandredlicorice #partyof16

We just received PICU Admission orders.... maybe one day soon he will catch a break and have some reprieve from here. #justmaybe 😢💙 . . . . . #lovemycrazybigfamily #picu #medicallycomplex #vpshunt #csfleak #luckyfinproject #limbdifference #thisismotherhood #cerebralpalsy #epilepsy #crps #momlife #disabilityawareness #largefamilylife #portacath #twins #specialneedmom #radychildrenshospital #momofmultiples #adoption #amnioticbanding #adoptionjourney #momblog #motherhood #medicalmom #momof11 #mommyunplugged #blackandredlicorice #partyof16

Real Life Moment as Not even sure what to Caption as I have written it one too many times before 😭. . Is it another CSF leak? Is it the flu? Is it something new? Right now his team of doctors are not sure as he has some new symptoms that have come up so waiting on several tests and blood work results . I just wish I could take it all away for him as he keeps coming here but through it all, he is such a fighter and so so Strong! . Please if you could take a moment to keep him as well as his team of doctors in your thoughts and prayers. As always I am truly grateful for your continued support, prayers and blessings for our Littles, our Family and following our daily Rollercoaster Ride. . . Much Love and Blessings ❣️ Julie . . . . . #lovemycrazybigfamily #medicallycomplex #vpshunt #csfleak #luckyfinproject #limbdifference #thisismotherhood #cerebralpalsy #epilepsy #crps #momlife #disabilityawareness #largefamilylife #twins #irishtwins #specialneedmom #radychildrenshospital #ablefables #momofmultiples #adoption #amnioticbanding #adoptionjourney #momblog #advocate #motherhood #medicalmom #momof11 #mommyunplugged #blackandredlicorice #partyof16

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