Wednesday, August 20, 2008

The Feeding Saga Continues


So, as you can see from the picture, Amina likes lemons. She adds this to her list of preferred foods: KFC mashed potatoes, Boston Market creamed spinach, mandarin oranges, mum-mums, Golden Oreos, and of course Pediasure. Aside from those, every now and then we find a food she likes kind of by accident, but generally she eats mandarin oranges and mashed potatoes. EVERYDAY.

Amina's new Early Intervention OT recommended that we add a dietician to her EI team to make sure she's gettin enough nutrients etc. It's kind of funny because there's not much to talk about when she comes...just mashed potatoes and oranges.

Kids with Williams are more likely to have underdeveloped teeth with defective tooth enamel. Amina has four of the CUTEST teeth I have ever seen, and since I am terrified of bottle rot, we've been working on eliminating milk at bedtime. The Dietician told me that it was great that I was being diligent about trying to eliminate the nighttime bottle, but because Amina has those teeth now, I need to get rid of the bottle completely because the bottle is going to start to effect the movement/position of her teeth.

I think its important to point out that this is is opposite of what my favorite folks at the feeding team told me. They suggested that I NOT try to eliminate the bottle because that is where she gets her primary nutrition and calories and we definately did not want her to loose those nutrients, if she refuses to take the milk from a cup (which she does of course). In their defense, it was a few months ago that I saw them, so their position could change but its still frustrating to have all the professionals giving you contradictory advice. Just about every parent of a kid with Williams will tell you that feeding is an issue AND sleep is an issue, so you can imagine how much fun its been when the two issues are merged.

Amina's pediatrician also informed me that its time to take her to the dentist. And she actually said it with a straight face. I said, "You mean MY daughter Amina? The Amina who refuses to eat and can't sit still? The Amina who won't even let me brush her hair or wash her face? You really think she's going to cooperate at the DENTIST?" After a person spends their time and money going to dental school, I think they deserve better than having to deal with Amina's little funky attitudes.

Amina and I have discussed the dental issues and I have explained that oral hygiene is very important. She has agreed to brush (suck toothpaste off her toothbrush) twice a day.

7 comments:

Amy said...

Avery used to eat Gerber green beans for every meal when she was still on purees up until 2-2/5 yrs of age, and now I can fix pasta (her favorite) a million ways. My two cents, ahving been through similar issues with feeding and weight gain, keep the bottle. Most therapists give you advice based on what they read in books, not what is partical for families. Amina will get to where she needs to be at her own pace, not by what a book or dietician recommends. Just don't give Amina a milk bottle to go to sleep with, give her a bottle before bed and perhaps one filled with water in the crib when she goes down. That is what I did to avoid bottle rot. Anyway, trust your gut! Amina is doing GREAT, by the way. And so are you.
xoxo
Amy

Every minute counts.... said...

I was told by the WS experts that if she would take anything out of the bottle keep it going as long as you can stand it because feeding will still be an issue when it is gone. I can tell you-feeding is still an issue. If I could get away with my 5 yr old taking a bottle and actually gaining weight for a change I would do it! Abi had one until she was 3 and I only got rid of it because of her teeth and she hasn't gained much weight since! If she will drink it from a cup then get rid of the bottle if not keep the bottle. Amy's right, Amina will do it at her own pace.

Noel

gradmommy said...

"She has agreed to brush (suck toothpaste off her toothbrush) twice a day."

LOL - my son and I had a similar discussion with similar results :) And I don't know how any parent of a child under the age of 5 takes them to the dentist. I'm waiting as long as possible.

camille said...

We have done the dentist and it's not pleasant. We are scheduled to go back in Sept and I'm dreading it with every bone in my body. They want to do a cleaning. YEAH RIGHT. That spinny tool that makes that noise will get no where near his mouth, they'll be lucky if they can brush his teeth. I would hold off on the dentist and just keep her sucking the toothpaste for awhile longer.

About the mashed potatoes, would there be anyway to mix in any baby food veggies in there or would she totally pick up on that? I don't know if you ever make your own mashed potatoes for her, but I did a lot of my own baby food making for Connor so I could control what went in there, and if you did make the potatoes yourself, you could make them with cream or whole milk to make them as caloric as possible.

About the bottle, we ended it at 19months. The pediatrician suggested 18 months and I was worried because he wouldn't take formula from a sippy cup (he still won't drink milk) but he did start drinking stoneyfield smoothies which have about 230 calories in them. And the eating solid food thing took forever and was really frustrating at times because he spit out everything but it did eventually improve. It's still not great but it's manageable now.

Julie said...

Oh I read your last few posts and it is like you are talking about Noah. Feeding is still an issue here. We have just discovered that he isn't even chewing the foods that I thought he was. He is just sucking on them. The only meat he eats is hot dogs. He love pb&j, pasta, potatoes, rice, cheese, yogurt, ice cream and oh yeah the wonderful pediasure. That is all he usually has for breakfast, his pediasure. I have tried everything. It sounds like she is doing well. We have already been to the dentist and had our first filling. Add the severe reflux to the enamel issue and it is a recipe for disaster.

Ginneh Akbar said...

THANKS FOR ALL THE HELP/ADVICE!

Amy - That's what we've been doing, giving her the bottle earlier and the water to fall asleep with. Its working pretty well. I worry about her teeth so much!

Camille - sometimes we sneak soft vegetables, cheese, ground turkey or small pieces of chicken or salmon in the mashed potatoes. This week Amina is eating noodles and she even ate some chicken salad. I make food for her all the time! She may eat it some days and not on others. Sometimes she likes my mashed potatoes, sometimes not, but KFC she ALWAYS eats.

Julie - I forgot to even mention that...Amina doesn't chew either! She sucks the food too! A lot of foods she will take and suck all the flavor/juice out, then spit it out. Even if the foods get soft, she will just spit the small, soft pieces out. Others she just thrusts it out right away.

Nancy said...

I think my son and your daughter have a lot in common, Ginneh. My son only eats corn and drinks his Elecare. AND he will only drink it from a bottle. The difference is that he is over 2! The doctors have also told me not to fight him on the bottle issue because the bottle is better than a feeding tube. He also sucks toothpaste off of a toothbrush and refuses to let me help him brush.