Maddison Ohs, Special-Needs Parenting

My Tiny Little Baby

Why won’t my baby grow?

When I held Maddison for the first time after her graceful entrance into our lives, I really didn’t know what our journey was going to be like. I also didn’t know that after 15 months since her birth I wouldn’t be chasing after a toddler – I would still be caring for her as if she was a tiny little baby.
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Maddison Ohs, Special-Needs Parenting, Tube Feeding

Transitioning to J-Tube Feeding

I never thought I’d be happy about Maddison being hooked up to her pump 24/7

If you would have asked me a couple months ago my thoughts on switching Maddison from bolus g-tube feeding to continuous j-tube feeding my answer would have been, “no way Jose!”

Maddison hooked up to her feed pump all day long was something we certainly didn’t want. But her reflux was so bad. So was the pump really worse than catching spit up in my hands all day long…?

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Maddison Ohs, Tube Feeding

Hospital Stay 2017

Photo credit: Rachael A Photography |

Failure to thrive

Maddison’s feeding continued to deteriorate after her spica cast came off. I had tried everything I could to help her, but Maddison continued to spit up anywhere from 75-100 times per day. I kept hoping things would start to improve, but they weren’t. She was starving, and we were beginning to get desperate! Read the Spica Story Part 1 and Spica Story Part 2.
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Maddison Ohs

IMAGINE – a Research Study

“Genetic Testing in Children with Atypical Cerebral Palsy”

Maddison is not currently diagnosed with having Atypical Cerebral Palsy, but it is the diagnosis that we are prepared to settle for. She has suffered damage to her brain which affects her muscle movement, coordination and control, which is the definition of Cerebral Palsy. Continue reading “IMAGINE – a Research Study”

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