Tuesday, March 6, 2012

Rylie's Trip to Riley

Rylie had an appointment yesterday at Riley Developmental Peds.  It was kind of awkward going to Riley Hospital and saying your daughter is named Rylie.  She kept trying to wander off while I was trying to talk with the intake person or fill out forms, and I felt kinda silly saying "Rylie, come here please! Rylie...  Rylie!"   They said she was a beautiful girl and her height is good so she will just be skinny, which is ok.  They said it was good to check, since she was close to the cut-off range where it would be "too skinny". If she was just a little smaller (4 percentile points) they would be concerned, but for now I just need to work on getting her more calories. This is the answer I was hoping for but didn't expect to be lucky enough to get. Her percentile for weight has fallen for several months now, and I was afraid we would need to test for her thyroid or other physical issues.  It was also a bit of a wake-up call to travel to Riley hospital. I've been so worried about the things my kids can't do, that I've forgotten all they can do.  That's not entirely true, as I know my kids are both beautiful and wonderful and awesome, but I do probably worry too much.  Going to Riley and seeing kids with CP and cancer made me grateful once again for my two beautiful children and all that they can do, and for the fact that God gave me 1. children who are curable and 2. the means to cure them (an education, the Internet, TACA, Dr. Hulseman, a dietitian, etc.)  If I lived in another country, these things might not be available to me. I am so grateful for the resources available to me, and the opportunity to share what I've learned with others.


The developmental pediatrician was great:  nice, not condescending, reassuring, willing to listen, willing to let Rylie roam the room while we talked.  She had me speak with a dietitian who had a lot of good ideas. She said to try things like putting milk-free butter on things, syrup, chocolate chips, peanut butter (try on her skin first and see if she reacts; there is a high likelihood she'll be allergic since I am, and she said the first two exposures are often fine, then the 2nd or 3rd exposure results in a reaction, so you have to be careful).  Try having her dip foods she likes (muffin, potato chips, fries) into different dips to get her to try things: like french dressing, ketchup, frosting, caramel (just making sure that they are milk-free and wheat-free) and then dip a new food in that same dip. The key is not more food but making the foods she does eat more calorie-rich. Try different kinds of potatoes which are high in calories, like fried potatoes, cut up with fake butter, sweet potato fries... since she likes the protein muffins, try banana muffins, applesauce muffins, etc. This is called food chaining. Think of the foods she likes and then find similar foods to try. My friend Maranda also told me about this idea.

Putting a little protein powder in her milk is a good idea too.  Also she said that we should try to eat as a family to let her see what different foods Hayden and I are eating, the process of chewing, let her and Hayden try one new food per meal (try one bite).  She said to only put three foods on Rylie's plate, two that she likes and one new one, and only a tablespoon of food per age. Many kids get overwhelmed if there is too much food on the plate.  This is why she throws all her food on the floor sometimes. Each meal I should try to give her a protein, a starch, and a fruit or veggie.  If I can get either kid to try avocado, like in a banana smoothie, it's a great food because it's high in fat. Bananas are good for both kids since they're both having diarrhea problems right now. Limit peaches. She needs an iron supplement for slight anemia.

They should eat in the highchair/ at the table but only for 20 minutes, then they can go regardless of how much they ate. For snacks give her two food choices, not just one. Avoid letting her eat constantly all day, have set meals and snack times.  They are going to sign her and Hayden up for a feeding evaluation with speech therapists.  We all sit at the table and they demonstrate how to use dipping sauces and different techniques to get both kids to try new foods.

Rylie has had diarrhea for two weeks now. Last Tuesday she ate her friend's graham cracker at lunch at daycare and has been messed up ever since. So wheat apparently does affect her and I will be more vigilant about keeping it away from her. I did the blood test IGG on her (finger prick test for food allergies) but it came back Saturday as insufficient sample, so I'll have to try again.

I cancelled her Ortho recheck for April because the doctor yesterday checked her and said it is the kind of in-toe that is common and will straighten out by age 8. I can continue with the brace and getting her to walk on her own will help, but she is on the right track.

She and her brother love to tickle, wrestle, and cuddle.  When Rylie naps Hayden notices she's missing and says, "where's Rylie?"  When Rylie goes to a doctor appointment without Hayden in the car, she looks at his empty car seat and says "Bahbah?" or "A-den?"



In the second video you can hear some "nonsense" talk from Hayden.  Sometimes he speaks a bunch of words that you can't understand. This used to be much more common and now only occurs if he is under stress or has some type of nutritional imbalance, like high yeast or phenols.


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