Thursday, October 28, 2010

Cleft palate consultation- a post about Zoya

We met with a cleft palate team today for Zoya and we have decided we are going to WAIT at least a year or two to before we attempt surgery.

First of all, we were surprised to find out that it appears a partial repair of the soft palate had already been done at some point. Perhaps when she had her lip repaired? The doctor explained that this was the most important part of the process anyway. He said that right now surgery would present more risks than benefits, simply because of how big the hole is and how malnourished she is. The hole in the roof of her mouth is a significant one, which means she would need to have a lot of existing tissue to extract from other places in her mouth. Sadly, she doesn't have enough existing mouth tissue to complete it now. The doctor feels that for the time being we can get her fitted with an obturator, or retainer, which would temporarily close up the hole so that she can begin to learn proper speech and eating habits while we fatten her up. Then after she gains 10 pounds or so, she will most likely be a candidate for surgery. He said that basically they only have one 'chance' to do it right and he wanted to set her up to be successful. Right now she is about 11 pounds she needs to gain to even plot on the growth chart! We have a long ways to go. We also met a speech therapist who prepared us for the reality of longterm speech issues.

Meanwhile, her eating continues to be a struggle. It seems the more comfortable she gets around us, the more she refuses to eat. She does like it when we feed her like a baby so for now we have resorted to making airplane motions with the spoon to get her to eat. Sigh. I have never EVER had a kid that doesn't want to eat, so this is a foreign concept to me. I haven't wanted to weigh her because frankly I'm afraid of what I will find out! However, we have noticed her ribs seem to be filling out a little bit, and a couple of the kids have mentioned her tummy seems to be 'a little fatter'. Should I weigh her? Maybe I should.

I was a little stressed thinking about winter coming up and not knowing how to dress Zoya. Her waist is about a size 3 MONTHS and her length is a 3T. My sweet friend Melanie volunteered her sweet mother who custom made several pairs of pants for her. She was THRILLED to have pants that we didn't have to pin in the back or that she didn't have to constantly pull up. I honestly don't think this girl has ever even owned clothes that fit her right. It is going to be a good winter! Thanks Mrs. F.!

16 comments:

Tina Koen said...

Charissa, the retainer idea is a great one. Matthew was a real picky eater growing up and was off the chart too, but I will never forget a doctor's comment in California. He said, "I do not know of any child that would starve themselves to death. If they are hungry, they'll eat." I know it's easier said than done, but I have to believe that she will. She may also just have a high metabolism:) She is in a great position to grow and learn in your household. You are doing a great job!

Anonymous said...

Well, I'm glad they are waiting on the surgery. I know she will put that weight on.

I agree with Tina. They won't starve themselves although you think they must be. I have a VERY picky eater. Lives off plain pasta and fruit loops. (with a banana thrown in when mom throws a fit) IT does drive me nuts though.

Jan

June Berger said...

How is she with Pediasure and such? Have you seen a dietician that can possibly help with increasing Zoya's calorie intake with healthy foods? I'm so glad she is getting some clothes that fit!!! Does anyone knit? They could possibly alter a few sweater patterns so that they would fit her better. If I could sew or knit I'd made her a wardrobe full, she's such a darling!
Praising God she is home with a family that loves her so dearly and will make all the best choices for her!!!

Cammie Heflin said...

I can't wait to see how she does once she gets her appliance! I think we'll have to make a Tulsa run for a visit so I can play speech therapist!!!

Stephanie said...

I have (had would be more correct-she is now 18, weighs 89 lbs, and eats like a grown man), a picky eater. She literally would only eat corn and milk until she was about 6 years old. I would try to "wait" her out and see if I could "force" her to eat. She didn't care. She literally just ate enough to stay alive and well (which is what we all should do). She still doesn't care about food like the rest of us do. She is a freshman in college and I am still reminding her to eat. When she sits down to eat, she eats very well. She is just so energetic and has so much to do, that she doesn't want to waste time to eat. Not like me in the very least. Anyway, she is healthy as a horse, plays softball in college, has a rocket arm (which noone expects for her size) and can throw you out from centerfield to home plate. So DON'T WORRY-she will eat and grow (maybe just not as fast as you want her to)!

Stephanie

Julie said...

I'm with you on the whole feeding issues. We still have them with Daisy, and she's been home over a year. It took her a year to gain 10 pounds. :( Hang in there. I have faith it will get better.

So happy someone is willing to do the repair right...and not a "quick fix" just to appease anyone. I think that is in Zoya's best interest. I'll continue to pray for you all. I know how hard the struggle is. Much love from us!

Anonymous said...

My child, adopted from Poland, came home with a severe h. pylori infection that wasn't discovered until he had been home 4 years. The cleft complicates things, but I would recommend seeing a Gastroenterolgist and having an endoscopy done. My son never was hungry, and he was well on his way to starving to death. He wasn't picky - he'd eat a tsp of anything, but never anymore than that. Antibiotics have him back on a positive weight gain, so it's an easy cure for a really dangerous problem. H. Pylori bacterial infections are common in E. Europe, so worth looking into.

Anonymous said...

Aw, sweet girl! She will get where she needs to be and you can have a big party the day she plots on the growth chart! in the meantime, I second the rec about checking for h. Pylori or other microbes. Worth ruling it out.

The McEacherns said...

Make s em thankful for Isabel's waist, which usually seems so small! She's about an 18 month waist with a 3T length. At least I can find leggings that work! Thank the Lord for your person who can sew!

Ohiomom2121 said...

Have you seen a nutritionist? I was surprised to learn I was doing a lot of "don'ts." They told me, don't let him graze, space out meals so he gets hungry (but do include 3 meals & 2-3 snacks), sneak in lots of fats (butter on crackers, whole milk, doubling fats in recipes if you can, etc.) and try not to make a battle of it. All fairly hard to do, for me. The nutritionist said parents push food all the time, so the child gets a little very often, but this actually creates thinness, as they never get hungry and then fill up. The filling up actually stretches the stomach to make more room next meal! If you can find any food they will stuff themselves on, even if not nutritionally the best, that can help a "starving" grazer, and you make up for that junk food w/more nutritious foods another time. It's counter-intuitive to say No to food for a grazer, but it actually fattens them up to space out meals. I will admit, tho, that neither of my skinny-minnies ever looked normal weight (well the adult is finally there!), but they both grew normally and were athletic even if we do have some bony sports pictures. I know how embarrassing it is to think others might think you don't feed your child enough, but at least I could point to my other children to claim I was a good mom! Good luck, and do consider checking out a nutritionist, which insurance might cover if referred by your doctor. Even if, like us, you only go from under the chart to 3%, you'll know you did your best.
Sherry

Jo's Corner said...

I'm excited to hear about the retainer! And, I'm glad they are waiting on the surgery. Zoya needs to be home and more bonded to her parents before she goes through a painful surgery.
I'll be Praying that she eats the amount that her body needs to grow and stays healthy!
Love to the Urban Family! Jo

Karien Prinlsoo said...

Feeding her, while making all the funny noises can also work to your (and her) advantage. My son (ds) is also a picky eater, and I have found that if we take his focus off new food, while making all the funny noises. We would say daddy i coming with the aerospace, open up open up, ext. Also doing all the "farm" sounds is great and while it is time consuming, it is an easy way for speech therapy. Later, you van let her copy the noises. We also take advantage of his brothers. Whenever, He tries a new food, or will finish what he eats, we make a huge fuss about it, and everyone around the table, cheers, and sometimes give high fives! I'm looking forward to see how a 'fattened up" Zoya looks

Charissa said...

Thanks you all for the good advice! Definitely gives me a lot to think about!

Melissa said...

So glad you don't have to worry about winter clothes now!

Anonymous said...

Sorry I am late to comment on this but I am a Mom to a small baby and I find it hard to sit down and type ;) Anyway, I have a grad degree in food chem with a speciality in sensory analysis (i.e. how food tastes) and I wanted to briefly and simply explain something that may help with Zoya. When we taste food its actually only salty, sour, sweet, bitter and the unami we perceive on our tongue the other attributes of food (i.e strawberry flavor) are aromatics that we detect in our nose. I do not understand fully Zoya's anatomy but I can guess if there is an opening in her soft palate that most likely she does not perceive food flavors like you or I. If food does not "taste" as good to her maybe she doesn't want to eat it. Think of how you think of food when you have a cold. There is a similiar problem in elderly patients who lose weight because with aging they lose their ability to perceive food flavor. Occasionally with flavor enhanced food they may eat more. Additionally, because she is less "distracted" by the aromatics in food her perception of sugar, salt etc may be heightened. Therefore, I would pay special attention to how sweet you may be making her food especially because she may be used to less sweet food in the Ukraine. A great resource (maybe they can answer specific questions for you) is the Monell Institure. I hope this helps.

will said...

I think every kid needs to be able to smile...
href=http://extratv.warnerbros.com/2010/09/christie_brinkley_onboard_the_smile_train.php smile train