When all you’ve known is SMA

I was washing dishes this morning and thinking about Khloë and then about the new baby. And I realized that this time around, if this baby is healthy and does not have SMA, then our life will be filled with all these milestones that we’ve never experienced before. How crazy is it that, as a second-time mom, I have never had the joy to watch my baby grab for a toy within her reach? I never saw my baby learn to roll over or sit by herself for the first time; she never crawled or pulled herself up to standing; she didn’t even take her first steps or learn to feed herself. All of these little things will be brand-new to us.


Mommy and her girl

Beauty

Instead, we watched our baby grow taller but also weaker. She had her first surgery at 8 months old–a feeding tube to allow her proper nutrition. Then we learned how to operate a Joey feeding pump, clean out feed bags, prepare formula, and care for her tube site. After that intervention, to help prolong her life, came the BiPap machine and another hospital stay. Any time Khloë took a nap or went to sleep for the night, Mommy or Daddy would put the Pixi mask on her face, check the leak, make sure she was comfortable, and then off she would go to dreamland. By the time she was 11 months old, she was requiring us to suction her mouth and throat much more often; this meant she was losing her ability to swallow. Twice a day, we would perform a cough treatment to make sure all the yucky stuff in her lungs got out because she couldn’t cough it out on her own.

All these things, they were Khloë’s special milestones.


After gastrostomy surgery

But I had the most amazing daughter. She liked music and loved it when Daddy helped her play xylophone or strum a guitar. She enjoyed watching “The Magic School Bus” and “Chuggington” on Netflix. She especially liked when one of us would dance around with her in our arms! She would lay contentedly on her ottoman, playing with her Do Not Enter sign and Sharkie, until she dropped one of them; then she would wait patiently for Mommy to pick the toy up and give it back to her. She rarely complained or cried. She was always so happy, no matter what we did during the day. Her giggle will always be the cutest thing I have ever heard. I think that’s what I remember the most.


Playing the xylophone

Things are going to be very different when the new baby comes. I think we are up for the challenge!

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