Elizabeth Joy Update

Elizabeth is now 22 months old.  It’s been a rough start to 2018– with two surgeries under her belt already and a 3rd on the horizon.  In late January, Lizzie got bilateral tubes put in her ears– and thankfully, she hasn’t had an ear infection since!  Then on March 1, she had a fundoplication and bilateral hernia repair done.  The fundo has completely stopped her vomiting.  For about two weeks I questioned if it was the right thing to do!  Now that she’s healed, I feel that it was!  She couldn’t continue to vomit multiple times a day! The risk to her lungs was too high.  For the first couple weeks post op, we had to keep Elizabeth on continuous feeds for 14 hours a day… but now we are 10 days into bolus feeding!  This is very exciting as it means she doesn’t have to wear the backpack all day long! I am now blending three meals a day which I prepare in batches of 8 days at a time.  I will share more on what we are feeding Elizabeth in a separate post.

Our tiny but mighty girl continues to thrive on REAL FOOD. I can only ponder how many health issues we’ve avoided by feeding her a healthy, well balanced, whole food diet vs. enteral formula with several times the daily recommendation of sugar (plus unhealthy oils, milk protein, and vitamin).

Elizabeth received a diagnosis of Left Hemiplegic Cerebral Palsy with Oral Phase Dysphagia last week at the neurologist.  This wasn’t surprising given her start to life– extreme prematurity and two rounds of bacterial meningitis.  That’s a lot for a tiny brain to deal with!  However, she is a strong and determined girl and we know that CP is just a hurdle she will leap over as she reaches her full potential.  This gives us a little more insight into WHY Elizabeth doesn’t swallow– as many as 90% of individuals with CP have some dysphagia– for Elizabeth it appears to be a more severe presentation but we hope in time she will be able to eat at least some orally.

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