Thursday, April 30, 2009

Medical Updates

Last week Payton saw her geneticist. She weighed in at 36 pounds and is 37 inches tall. She falls within great percentiles on the typical growth chart, so her geneticist is thrilled with that.


We discussed her speech and the doc would like us to start using pictures boards here at home. Sigh. As if we need something else to occupy our time. I'd rather go more hardcore on signing, because she finally is doing great with imitating sign and using it without being cued.

*trying to remain positive*

Payton's speech is just so ready to come out of her mouth, I can tell. It is like we are standing at the top of a mountain, but we just can't pull ourselves over the peak. She has been doing really well these past couple weeks as far as imitating sounds and even imitating intonation when she isn't necessarily imitating sounds. Her favorite new word is shoes ... it is so cute. I need to make a list, but other words ... or approximations ... she has been saying is pizza, Mason, bubbles, pop, all done, dog ...

She talks all day long. We don't always know what she is saying, but I'm pretty sure she knows exactly. Last night she sat on the couch and read a book to her doll. It was so cute. She held it outward like her teacher does at school, flipped the pages and read the entire thing ... in her own way. I just sat there and smiled at her ... that chick makes my heart swell out of my body.


We also discussed Payton's horrible eating habits with the geneticist. At times, I have been at the point of wanting to get her into a feeding clinic. She eats chicken nuggets at least once per day, if not twice. That and pizza are pretty much the only main foods she will eat. Although she is getting better and better with pasta ... finally! She does eat yogurt and of course, anything salty like chips or crackers. The only fruit I can get her to eat is mandarian oranges ... and sometimes that comes with a gag. And veggies? Forget it. That is why I give her Juice Plus ... in gummy form, which she will also finally eat.

Her eating issues have definitely given me a run for my money. Her geneticist is not completely concerned, as Payton's growth has been excellent and it is clear that she is getting the nutrition she needs. We also give her Nutrivene, so she is getting some of what she needs there too.

*Disclaimer: I did not mention Nutrivene for anyone to come here and be negative about it. So please, refrain. And for those of you who do not know what I'm talking about, just know that the use of Nutrivene is very controversial. Nuff said. :o)


Let's see ... we also got scripts for bloodwork and we will have another set of AAI xrays done. I can't wait to see what her iron level looks like, because her Restless Leg Syndrome is out of control ... and low iron contributes to that.

Other than that, Payton is doing fabulous. She is such a strong little girl ... the doctors are amazed at just how strong she is. She fights them tooth and nail ... LOL. She is feisty, like her mama.


I took both of the girls back to the ENT yesterday to discuss hearing, speech and tubes. Payton's right tube fell out awhile ago and the left tube is blocked. So I guess we are getting no benefit from tubes right now and the plan is to replace them. Nika's ears continue to look great. She has a little wax build up, but nothing that is alarming.

So we discussed speech and whether or not the girl's are hearing to full capacity. We never get much of a reading on the tympanogram from either one of them, but their small ear canals could be batting against us. We have decided to get a sedated ABR for both girls just to be sure and to know what we are working with. I am less than thrilled about having to sedate them, but I think having these results will help us to know what we are dealing with, if anything. I like to be proactive. Both girls will be having AAI xrays beforehand, just to make sure there are no issues with their necks in case they would have to be intubated. God forbid.


And now ... little Ms. Payton is sick. I'm not sure if it is all the changes in weather we have had or what. She has a croup cough, is wheezing and now has a fever. Could summer come and stay please?


  1. Maybe they could at least do Payton's ABR and tubes at the same time.

    Great news on Payton's growth and Nika's ears!

  2. Unfortunately I'm told they can't do the tubes and ABR at the same time. Different doctors, different facilities. :( I tried that. LOL

  3. So how old is Payton? Sounds like you guys are on the same page as Bryce - he's 4.5
    We are starting the PECS board system too although the signing is just clicking with him. I requested that they put the sign either on the picture card or on the back of it so that we can get 2 things done at once (just an idea).

    You would do AWESOME at making some of her picture cards with your photography gift you have!!!

    Now tell me this - why is it that our bio. kids that have has full access to medical care are in greater need of intervention than our adopted kidos??? I can't figure it out! LOL

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  8. OOPS!! Sorry - I got a little impatient that it wasn't publishing my comment and kept pressing the thing! LOL That's why there are all those "deleted comments"!!

  9. speech is there!!! she's using her own language, you just need to translate her language to your language.

    hope she feels better soon.

  10. That sucks about the tubes and ABR....they did Koby's at the same time and it was great! Either way I hope things work out well for you! Glad to hear your girls are doing well and healthy for the most part...poor Payton!

  11. I had sent Shay these recipes for Jaxson but maybe they'll be good for Payton too.
    The first is a little bland and could use some seasoning, maybe some dry ranch dressing or just salt and pepper. You could also try using some crushed cereal instead of breadcrumbs-might add a little sweetness?

    I added my changes below
    1 lb ground turkey
    2 medium carrots
    1 large apple-I changed to 1 cup of washed, dried, torn fresh spinach
    1 garlic clove-I changed to 1/4 tsp garlic salt
    1/2 small onion-left out
    1/2 egg, beaten-I used one whole egg
    1/4 cup unprocessed natural bran-I used 1/4 cup of baby oatmeal (you could use rice cereal too)
    1/2 teaspoon dried thyme, crushed - i used 2 tbl parm cheese instead.
    salt & pepper (optional)

    Here's a veggie recipe too!
    Brocolli cheese balls
    I looked at two recipes and made my own. Bad thing is i don't really measure when i do that:(
    16 oz froz chopped broccoli
    -Cook in microwave, cool and then chop some more
    3 eggs, beaten
    1 cup of bread crumbs (I didn't think of it but i could've added some baby cereal to this and lowered the amt of breadcrumbs)
    1.5 cups shredded chedder cheese
    make into balls. cook at 375 on greased cooking sheet for 20-25 mintues turning halfway
    *if the balls seem to mushy add some more breadcrumbs or cereal

    Will she eat fruit in Jell-O? I know recipezaar had some recipes for making jigglers with fruit in them.
    Good luck with her eating habits!
    ~Julie (friend of Shay's)

  12. Glad the girls are doing so well. Just wanted to say that I so feel your frustration on the eating issues (except I have at tiny peanut, P sounds like she is a great size). It's pretty much yogurt and PB&J here. At least she eats oatmeal with frozen fruit for breakfast. But that on top of never, ever wanting to drink is making me crazy. So yeah, I feel your frustration all right!

  13. I'm right there with you on the not eating thing. Samantha won't even open her mouth to try it if it's not on her list of "approved--tried and tested" foods. LOL
    The fact that Payton's making sounds and approximations is wonderful! Will she be in ESY this year? It sounds like she's definitely on the verge of a breakthrough. Is she able to tell you what she wants in some way most of the time? If so, maybe she doesn't need the picture aids...? What does her teacher say?

  14. We just did the ABR test due to small ears and discovered a mild loss in her left ear. she did amazing through the sedation. I hate having to sign the papers saying up to and including death but everything went fine for us and I am sure it will for you too : ) Good luck

  15. forgot to mention that Elias loves salty like Payton, but what also he likes tomato sauce and ketchup

    the reason why he began eating nuggets, french fries and pizza was because of the tomato taste.
    He began doing some weird combinations with ketchup, but we let him do it, at least he was eating

    so soon I discover that he liked lasagna too because of the tomato! and then i started making different things where i couls use tomato sauce, with cheese,or with mushrooms etc... he began eating and now one year later he can eat most of the things even without ketchup

  16. Max pretty much lives on those little pizzas. He is very picky but I have read of more picky eaters.

    Speech is Max's biggest weakness. Sounds like Payton is getting there in her own time. Good luck with the ABR's.

  17. Sounds like the girls are doing great! I can't believe how big Payton is!!! She is taller than Kennedy! LOL I hope their ABRs go well and of course the AAI X-rays. And good luck with Nika's eating. Ugh. I could just pull my hair out with Kameron!

    Keep us posted! :)

  18. Great that you are using JuicePlus and NTV with the girls!

    Have you looked into TalkTools for an oral motor evaluation for Payton? It is very successful in strengthening the jaw, which is the foundation of feeding and speaking.

    The way you describe Payton's speech is very similar to Macey Saunders (adopted from Ukraine in August 2007 ). Macey is just now starting to use English--2-3 word phrases. Hang in there with the signing--the English will come!

  19. I always wonder when bad eating habits merit more intervention. Kayla eats like 5 things, and NO fruits or veggies aside from the occasional bite of banana or applesauce. Docs never seem to be concerned if the kids are still growing. And I suppose insurance won't pay for a feeding clinic if the kids are still growing.

  20. We have used bits and pieces from Talk Tools. Unfortunately, it is VERY expensive to have an eval done by the them, as well as the ongoing things it entails. Payton does not have low tone in her mouth much at all. She does not have open mouth posture and she has great control over making O's and such. Nonetheless, I know she could always use strengthening and we have exercises for that. So alas, we are back to square one.

  21. have you checked communication partners? really is not expensive! just by checking the website, and email dr jim you will get the full idea, if you want to get deep you can buy a book , and if you want and can $$$ you can have an appointment but really since we are in mexico is hard to get that type of attention, and i email dr jim periodically sending him videos, and he's just great healping. i was just watching a video of Elias before we began comm partners, and 6 months after, and now one year is a complete diff story

  22. Pictures have been suggested for Aden as well. Main so he can start to choose different thinks. At the moment he will sign food or biscuit or say “moo cow” for bread lol not that he eats much more than that sigh.
    I know the food issue well, Aden si like Payton, anything crunchy n salty fruit is out now, since our scare if it isn’t puree it’s not going near his mouth. Payton is doing wonderful with her imagination play. I remember watching an older video of her at Christmas just the way she interacted was sooo grown up. Now reading to her dolls that is just too cute.
    Aden’s just starting to chat away, he has said single word for a long time so this chatter is so welcome
    Lol I just realised I’m rambling on, sorry to hear the girls aren’t well, hope they are doing better soon.

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