Clare had her evaluation by the feeding team yesterday. It has been almost a year (minus one day) since the swallow specialist and nutritionist came to our house. Last year, they offered a 6-month follow-up, but we ended up canceling it because Clare had done so well with her eating. We started the process of having Clare re-evaluated in the midst of her eating strike. Since she has started eating again (and loves it!), I wasn't too sure if there was going to be a point to the consultation, but I figured we were better off making sure there was not something that we were missing. Clare's fabulous OT came to the evaluation as well (thank you, Jess, for helping to keep Jamie entertained as well!).
After going over Clare's extensive medical history, it was time to talk about her diet. I had not realized this until the nutritionist pointed it out, but Clare only eats in whites, beiges, and yellows. Pretty funny! But not the most nutritious diet. (And I don't think her colored M&M's or dum dums count.) Her favorite foods are pasta, toast, bananas, dry cereal, cheese, pirate booty, crackers, you get the picture. The nutritionist was going to work up the numbers on how many calories Clare consumes in a day, but her bottom line advice was to get Clare to eat "more colors." Simple things such as instead of the white cream cheese we usually put on her bagel, trying strawberry cream cheese. These are certainly easy things we can try - we just needed a boost in the right direction with ideas. She also switched Clare's vitamin to a more complete one (as in Flintstones Complete... duh...) that has more vitamins and minerals, since Clare's diet is limited, especially in the fruit and veggie department. Clare's fat stores are still at 50%, which is good, in her opinion. (This is where the nutritionist and Clare's GI disagree.) The nutritionist feels Clare is proportional in her height to weight ratio. Since her fat stores are adequate, her low weight is due to having very low muscle tone. Her low weight is not putting her at a nutritional or developmental disadvantage, so it should not be a big concern. Obviously gaining weight is great, but do not stress over it. (We have our GI follow-up in March, so it's always fun to hear his opinion as well!)
Then the truly exciting part came. Clare got to eat lunch for the team. The feeding team is superb, and I don't mean to poke fun, but I have never seen people get so excited about watching someone eat. It was actually very sweet! Clare ate like she normally would (even with three additional adults observing her every move while trying to act like they weren't) - mushed her bananas in her mouth, picked at her eggs, chewed some ham and cheese but always ended up spitting it out, downing her milk, totally refused the carrots, and gobbled her dinosaur crackers. The swallow specialist said what was very exciting (hee hee) about Clare's eating skills were that Clare imposed her own limits on herself. She definitely had swallowing difficulties, but she realized that. So instead of swallowing the ham and cheese, she would spit it out. But Clare obviously likes the taste because, after she spit it out, she would try to eat it again (sounds gross, and it really is, especially for preggo mommy who cannot even look at deli meat right now never mind masticated deli meat that is being re-eaten). But again she would always spit it out. The specialist explained that many kids would try to swallow it, and end up choking, gagging, and even vomiting. Clare, however, does not do these things, simply because she understands that she cannot swallow certain foods. Clare only has 1.5 molars (the second one is cutting through right now), so her chewing skills are not developed. I was very glad Jessica, Clare's OT, was involved as well because the swallow specialist gave her some exercises to incorporate into Clare's OT sessions. Things such as showing Clare how to chew on foods such as jicana and dried mango strips. I am interested to see how this all turns out! Since Clare is already demonstrating protective measures in swallowing, the specialist stated that there was really nothing to do right now swallow-wise. The plan is to work on her diet and chewing skills (which will hopefully help her swallowing) and follow-up with the feeding team in six months. And, this time, I am keeping our follow-up appointment. You never know what tricks Clare may pull in the meantime!