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Feeding Team, Rare Disease Day, And More March 1, 2014

Filed under: Uncategorized — ryangrace11q @ 3:32 am

In the almost two and a half years that we’ve been visiting Children’s hospital, I have seen some very sad things in those halls… but nothing like what I saw today.

Ryan had her Feeding Team appointment today.  Katie was about 10 minutes ahead of me with Ryan because I took Charlie to school in a separate car.  She was already up in the room when I got to the hospital.  I parked and entered in the area near the ER.  As I walked by the ER, I saw a father, in complete and utter anguish, with whom I assumed were his parents, and another couple…. maybe the father’s brother, maybe just a friend.  They were all crying.  Completely heartbroken.  The father had his hands on his head, just rubbing back in forth, tears streaming down his face.  The other man put his arms around the father and just held him.  Then they all walked out of the hospital through the front doors… without a child.  I have no idea what actually happened but in my heart, I knew.  He lost his child.

I tried to conceal my tears as I hurried down the hall to Ryan.  I had to get my arms around her.  And when I did, we squeezed each other so tight.  That family hasn’t left my mind all day.  Even in the feeding team appointment, I found myself fighting back tears.  All day at school that scene crept back into my mind.  Finally, at the end of the day, I lost it.  I just couldn’t hold it in any longer.

That morning, the actual appointment went OK.  We saw the usual: nurse, speech, OT, dietitian, nurse practitioner, and social worker.  They were pleased with how she’s eating, but she’s not gaining well.  In fact, she’s dropped off her growth curve.  We left with lots of ideas on how to get more calories into her more efficiently and a prescription for periactin – an antihistamine that’s side effect is an increase in appetite.  They also want us back for an 8 week stretch of feeding therapy.  For me, that was kind of disappointing to hear.  Although they told us how pleased they were with Ryan’s progress, I couldn’t help but feel like we haven’t been doing enough.  *sigh*

It’s kind of been one of those weepy weeks for me.  On Monday, we had to say goodbye to Debi, our Help Me Grow Developmental Specialist.  She has decided to take another job in Washington state, and although we are so excited for her to be going on this new adventure, we will miss her so much.  She has been working with our family since Ryan was about 3 months old.  Although Ryan was her primary focus, Debi took care of all of us.  She loved both Ryan and Charlie and we all loved her.  It was really hard to say goodbye.  We already miss you, Debi!  At least we’ll be able to catch up via Facebook, right? 😉



At school, some students who are involved with the Autism and Disabilities Dinner helped me bring attention to Rare Disease Day today.  They read facts about rare diseases on the morning announcements all week,  sold denim ribbons (jeans = genes) to their peers in the cafeteria, and made a display of Rare Disease Day supporters by recreating the logo with hands.  I was so touched to see so many staff members and students wearing ribbons and getting involved.  We raised almost $160 for the dinner!  After school, I went down to take pictures of the display and was just so touched by all the support, that’s when the floodgates really opened.  I am so lucky to work where I do.  It’s not perfect, but where is?  And after seeing what I saw today, it put things in perspective for me once again.








One Response to “Feeding Team, Rare Disease Day, And More”

  1. Mary Effler Says:

    Liz & Katie~ you two are such an inspiration to all parents. You shower those girls with all of the love and attention they need. Even through all the tough times and disappointments, you still seem to find the positive and good in your lives. I love that…and we love you guys! Hang in there.

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