Yesterday we entered the Children’s hospital yet again. A few months ago we came for our GI consult, and we were granted an evaluation for the feeding clinic at the Arnold Palmer Hospital for Children in Orlando. It is a fantastic place, and we are blessed to live in Central Florida close enough to have access to this medical facility within a half hour drive.
A half hour drive down the traffic of I-4 isn’t easy mind you. Central Florida has traffic woes for sure. All of you who visit the theme parks…wonderful. Some of us live here though…it makes for a road full of many local people and mucho touristas tambien! (many tourists also). I left our house at 12:30 p.m. yesterday (later launch than planned). We arrived on time at the precise 1 p.m. that they requested (a half hour ahead of our appointment). I checked in with my security tag, went through registration much faster since we were in the system, and then we waiting a couple of minutes in the hall (locked door and staff at lunch). We waited a bit more in their waiting room while I filled out paperwork that I feel I’d done before…doesn’t it feel like you write the same stuff again and again at doc offices?!
Eventually a sweet gal took Bryan’s lunch box to a kitchen area to prep the foods we brought. AND, she added some! Eek. Bryan and I freaked a little bit. BUT, the cafeteria tray was brought to a cute therapy room complete with Eric Carle’s “The Hungry Caterpillar” stick ups on the wall. The Occupational Therapist (OT) gave her evaluation: some paper based and oral motor tests then the feeding component. I got to sit at the tiny table with them, and the Registered Dietician (RD) typed away and asked me a lot of questions. It was pretty informal, but it felt formal because of the all of us sitting and talking about Bryan in FRONT of Bryan. He handled the eval like a champ. He did not cry (phew). He did refuse to eat any new foods at first, but then when I suggested he lick a few (he had told me earlier “mom, I’m only going to lick new foods today.”)…he did that and more.
The OT guided him to try ALL of the new foods when she wrapped each tiny piece in a square of organza. The organza (my husband thought that was a mis-spelling on the recommendations) is a thin mesh fabric kind of like what bride’s wrap their bird seed in! Whoa…what an easy and good idea. It reminded me of the teether sacks we gave to him ages ago. May have to get those again.
Later into the evaluation, a new Gastro doc appeared. He was very laid back and thorough. He reviewed the paper chart and asked a lot of questions. Then, I asked questions as well. He brought to light some concerns that would be inside Bryan that we could still be missing: esophagitis (allergy of the esophagus), slow stomach (with some medical hard name), ulcer, and reflux. Bryan had reflux as a baby, but there was a chance he is still having it. It is hard for kids to communicate their symptoms. However, Bryan impressed the doctor with his summary of his poop and gas!
After about 90 minutes of evaluation by the GI, OT, and RD…they left the room and the OT said “go ahead and eat whatever you want now Bryan.” She also left all of the Talk Tools, whistles, etc. Bryan of course chose to demo every whistle for me. I tried to get him to eat the remaining granola bar piece that he had on the tray. He said “I’m not hungry.” “I’m read to go. This is taking SOOO long.” Of course, he’s six. We played, and I tried to get him to lick or taste some of the foods on the tray. The best I could get him to do was take a few more baby spoon licks of peanut butter (something he likes at home). However, since it was “mixed” with raisins and celery for ants on a log it was not his fave.
When I spied a camera in the roof of the room looking right at us, I felt the need to “perform” just in case they were watching us?! I put a few bites of food to his cheek playfully as he played with his whistles. I texted my husband that we were awaiting the results (are we in for feeding clinic or not?!) After about 20 minutes the GI doc returned first. He explained additional tests he wanted to run under sedation: endoscopy, blood work, EGD, and insertion of a pH probe. Okay I was slightly freaking out in my head a little bit, but I nodded, listened, and asked questions after he spoke and while he spoke. I’m an interrupter. (not my best trait) He was good though, and then told us to sit tight and wait for the OT and RD. Great…more waiting. They came back to say “yes…he is a candidate for the feeding clinic.” YES!!!!!
First, they explained the medical components of the GI doc have to be completed and treated as he sees fit. After those then we will meet back in late August to discuss the next steps. Another consult of sorts. NOT what I wanted to hear, but I understand they have to rule out medical issues and create a medical necessity for insurance to qualify him for the feeding clinic. Looks like we may do that in late fall or winter of this year after these GI tests. Until then we are to continue with their page of recommendations and re-start outpatient feeding therapy.
Our outpatient feeding clinic evaluation was completed without tears by Bryan or myself. Hallelujah! Praise God from whom all blessings flow. I’m thankful for the teams of medical professionals that help treat children. As I watched kids, parents, and professionals, walking in, out, and around Arnold Palmer Hospital yesterday I smiled. There is a place where many stories unfold. There are places like this all across our BIG world. After we loaded in back into our car and exited the parking garage…we opted for a trip to Walmart. Bryan wanted a NERF glow in the dark basketball hoop from the APH gift shop. At $17 I convinced him to wait for Walmart where it would be cheaper. It was $15 at Walmart so by the time we threw in a new Hot Wheels car it was a wash. But, in bribery, and kid type pay checks I’m good with that.
Thank you to those that are following Bryan’s story…our story. Thank you for your prayers. Thank you for your empathy and sympathy. We know there are many kid “issues” that occur over time, and we each have unique personalities, medical concerns, and life events. Your story matters too.
Until next time…let’s pray:
You are growing us day by day.
Forgive me when I fail to see or recognize that you have designed OUR child for US.
What a truly blessed gift. Our two boys are vastly different, and they each have strengths and weaknesses.
Thank you for showing me the love and light that is in them, in me, in my husband, and in the people we meet in the community. Thank you for children’s hospitals. Thank you for the time you give us to love and learn.
Be with us today as we eat, play, work, and give us pause to pray in thanks, for help, and in adoration of You.