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Wednesday, August 27, 2008

Another Doctor Appointment for Amanda

If you read both our blogs, you will see both my littlest girls had appointments today, we were only home a few minutes in between, enough to to feed and diaper the girls. I am exhausted and cranky, so were the girls, no one complained about going to bed tonight.

This was Amanda's official well child check-up. She has seen three doctors, but never had a regular check-up. I took her to the nurse practitioner because I thought she was knowledgeable and thorough. Well, Amanda has so many issues that the NP told me she did not feel comfortable caring for Amanda and told me to take her back to the pediatrician. Ugh, no offense to him, he is a good doctor for typical kids, but he does not know what tests to order for the girls and did not have a Down syndrome growth chart until I told him where to find it on-line. I do not want to be the person having to remember everything, I want the doctor I pay to be the guardian of their health to KNOW as well. Is that too much to ask?

At any rate, Amanda was weighed for the first time without clothes on and she only weighed 17 1/2 pounds, down 2 pounds from August 1, a different scale and she had alll of her clothes on. I felt like cold water was thrown over my head when she said how much Amanda weighed. How could she have lost weight with all we have fed her?

We were so pleased that she was accepting vegetables and meats in her diet now, even though they are pureed, but at least are not overly sweet and full of sugar. We have huge issues with her diet because she won't eat hot food, refrigerator cold food, and will not drink anything. I emailed a few moms today about this and they all gave me good advice, but we tried most of those things with her already. We add butter to all her foods, cook with coconut oil, and we add enriched (organic) rice cereal to all her fruits and her yogurt. We add Elecare to her yogurt as well. I have not tried heavy whipping creme (thanks Meredith) that is definitely worth trying, I could whip it up and add it to yogurt, and I am sure she would love that. She loves creamy foods.
We will not try Pediasure because of all the artifical sugar in each serving, sugar is an inflammatory agent and we do not eat a lot of it. I did find this Organic version of Pediasure. It is called PediaSmart She does not like the Elecare, maybe this would be a good alternative? PediaCare is really expensive, ouch. I would have to add it to puddings, she won't drink it. I also think it is time to get her a honey bear to drink fluids with, it is how we taught Meghan to drink from a straw, Amanda simply does not know how to drink or to chew.

Still I believe there has to be an underlying condition with her, she eats enough calories to be gaining weight, she has more energy than she did and moves all around the house, and she truly never stops moving through rocking and fidgeting, so she may be burning more calories than she takes in. Her color is better, she seems happier, so I am just confused. So we will add more fat to her diet (good fat). I also believe her teeth are hurting her (why she won't eat hot-cold and very sweet things right now).

Please pray for her, she is such a sweet little miss, she sure does not deserve all these issues. Tomorrow is her hearing screen, 9 Am, lord help us, it is too early for us.


GoldenAngelsWorks said...

It could be she has a high metabolism and with it being summer she could be burning everything off too fast. My kids would always lose during the summer expecially during a growing spurt. Then come winter the would gain weight. Hope that is what is going on.

Good luck with the hearing screen. I will be thinking of you all today.

Anonymous said...

Hi there! I read your blog a lot and have enjoyed following your adoption story! :)

I would order a sleep study. Most children with Ds have obstructive sleep apnea, and that can contribute to lack of weight gain. It can also contribute to autistic type behaviors. My daughter has Ds and severe OSA and has a lot of autistic tendencies, but I'm on the fence as to whether she has the dual dx or her OSA is causing the stimming, withdrawal episodes, etc...

Arizona mom to eight said...

We still need to see the ENT, I will definitely ask him/her about this, thank you.

Rachel said...

I will be praying for Amanda.

Susan Luhrs said...

Her teeth issues definitely will make her not want to have hot or cold foods. I have had problems with my teeth and have had times when everything has had to be room temperature or I am in terrible pain.

This same thing happens with pets. Lots of people have cats and dogs who don't want to eat well, and then find out that they have a bad tooth or bunch and, when that is resolved, the animal turns into a little chow hound.

Hugs, Sue from Maine

Courtney said...

Our boys aren't DS, but we have had them home for 8 months and they haven't gained a pound--not ONE pound. Grr..and they eat super well. They were 4 and 5 when we brought them home, and my guess is that their bodies had so much repair to do internally from malnutrition that it is going to take awhile for them to start gaining weight. They're also very active, so I'm hoping once it cools off I can get some meat on their bones. I'm definitely sharing in your frustration!!

Lou said...

Okay--- how do you use the honey bear to teach her to drink?

My three little girls

My three little girls
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