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Robbie Eats: Week I

 

The Run-Down

A typical day includes 3 meals (breakfast, lunch and dinner). In between each meal there is playtime where the kids can go to supervised playroom and get a lot of one-on-one attention. During playtime the children will have different therapy sessions. Robbie meets with a speech therapist (swallowing, gagging etc) as well as a occupational therapist (chewing, jaw strength, using utensils). And then there is a bit of down time where he and I wander the halls of John’s Hopkins while he sings the Spiderman theme song and pretends to run sideways along the wall.

Commrades

Robbie is amongst 12 peers. He is one of the only “typically developing” children in the program. This presents an interesting scenario because he is surrounded with peers who do not react in ways that he is used to. For example, if he decides to take a toy from a peer, they might decide to throw a chair at him. Cause. Effect. These are valuable lessons for a young child.

The Facts

Before I drone on and on about how he’s charmed the staff and been adorably clever, I’ll just cut to it right now and tell you that only a very small amount of purees were consumed at the beginning of the week and the rest of the “meals” have been met with everything from wracking sobs, to a polite, “no thanks.” This is to be expected and the team is not concerned. They say it is typically a slow start.

Highlights

-On the first day Robbie walked into triage and announced, “I’m Robbie Annnerson, I come from Houston!” When he saw that his introduction was so well-received he added, “want me to show you on a map?!” The nurses were like butter in his very small hands.

-During a “toy preference assessment” they lined up a series of 8 toys to determine which toys he liked best and in what order. His first selection was the airplane. They allowed him to play for a moment and then took it away and told him to choose his next toy. He declined saying, “no, that’s okay, I’ll just take the airplane.” After a few rounds of them insisting and him declining, he finally gave in. He proceeded to pick up each toy, feign interest for a moment, and then set it down. He continued to do this with each toy until by the end he was hardly putting a finger on the toy before asking to have it removed. Reaching the last toy he put his hands in his pockets, let out an exasperated sigh and said, “now, can I have the airplane?”

-When the kids are moved from one playroom to the next, they all ride in a large “buggy” that sits 3 people across and 3 people deep. I happened to be walking past as they were preparing to load up. And who do I see but Robbie in the front waving a hand to the rest of the excitable group of kids shouting, “C’mon friends! To the buggy!” Like a fearless leader charging into battle, he rallies the troops until they all get in trouble for trying to rush the door.

As For Me?

I teared up no more than 4 times this week and only cried once. And that’s when I walked into the Dome and looked up at the giant Christus they have in the foyer. It was a long week and I was so moved I couldn’t keep the tears back. Of course God is present in this place. So many prayers, so many desperate pleas to our Maker to save and heal. So much sadness and so much hope. Confirming for me, once again, why being in the medical profession (particularly pediatrics) is one of the closest ways that mortals can come to being Christlike.

Let Me Sum Up

Did anything of great significance happen this week? No. Am I discouraged? Are you kidding? No. The kid has NEVER eaten anything so I’m not expecting a miracle (just yet). The program is impressive to say the least in its organization and attention to detail. We’re here and we’re ready to work. So onward and upward it is.

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8 thoughts on “Robbie Eats: Week I”

  1. I teared up (of course) reading this. So grateful to our Maker for miracles, kindness, and opportunities. Wahooooo!!! and Hurrah!!!! from Utah!

  2. I as well teared up reading this… I looked at that statue and thought how I can’t understand all of the feelings and emotions you are experiencing, but there is someone who does. You and Rob are exactly what this little guy needs – I see a lot of your personality in him. Lucky guy! 😉 Keeping you in my prayers!

  3. Love the little buggy leader. No wonder everyone’s loves him.
    Thanks for the updates. Can’t wait to hear about this next week.

  4. Yes, you are amazing! Thank you for the update… This made me smile so big picturing Robbie great everyone on his first day and the airplane story 🙂 🙂 🙂 please give little man a big hug and kiss from Ms. Jayme and Mylo 😘😘😘

  5. Kasey! I am so glad that I ran into your blog! My friend, Brooke Hancock referred me to you. I am so glad I listened! Your sweet boy reminds me of my little Porter dude. He was 1 lb. 11 oz. when he was born and also had “failure to thrive.” I’ve taken him to many therapy sessions with little improvement. I really hope for the same outcome for my little guy! It sounds like the program that you’ve been going to in Maryland has been intense but so worth it! How does one sign up for the program? Is it pricey? I’ve heard it mentioned from my therapist here, but never got specifics. My son is 2 1/2 and can drink water (milk), eat a little bit of yogurt and pudding. He attempts to eat a piece of bread or a cheerio, but usually sucks on it and eventually spits it out or throws it up (bad gag reflux). I wonder if he’d be qualified for the program? How long is the program? Is it about a month? I have no connections to anyone in Maryland. Where did you stay? Sorry for all of the questions. It is just so refreshing to come across a fellow g-tube mama that has been through the same things. Thought I’d pick your brain a bit. I hope your day is fantastic! Congrats on all of Robbie’s progress! I am so happy for you guys!!

    1. Hey Kim! I’m sorry to hear about your little guy. Feeding issues are so difficult and it’s so hard to find the right therapist who knows how to treat such an extreme case. We came across the Kennedy Krieger Institute while I was researching different intensive feeding therapy programs. The reason we chose this one was because my parents live in Baltimore and we are able to stay with them. However, there are other programs in different parts of the country. Your therapist should be able to direct you to different programs (I know there is one in Dallas but I can’t remember the rest). Most programs are about 8 weeks long with the option to be either inpatient or outpatient (8-5 M-F) depending on your child’s diagnosis. Most hospitals also have a Ronald McDonald house that offer a room for you to stay in with your child.

      Your primary care has to provide a referral and once you’ve set up an intake appointment you will have an initial interview and assessment where they will determine if your child is a good fit (and from your description it sounds like he is). There is typically a long waiting list so I would get started in the process early if you think it’s something you are able to do at this time.

      Feel free to email me at sothereisthat@gmail.com and I can try to help you get more resources and details! Good luck with the little man!

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