Monday, September 28, 2009

Potty. Gingko. And an ABR or two.

Payton and Nika waiting for Nika's bus

Payton has been doing so good with her potty training. I'm still really nervous to put her in panties, but she does remain dry pretty much all day. And the best part is that she is finally telling us more and more that she has to go.

Nika has definitely been showing an interest in potty training ... I assume because she has been seeing Payton doing it. She often will sit down on the little potty chair ... fully clothed ... grunt a little, stand up, cheer and then "pour" the potty insert into the big toilet. Crack me up.

So this morning when she was still dry from last night, I sat her on the big potty. She tooted a few times, so I wonder if she associates the big potty with going #2. LOL ... TMI, I know. So I went to get the little potty, sat her on it and she went pee. OMG, she was so excited. She stood up really fast, clapped and said, "Yay!"


Disclaimer ... I am not bringing this up for people to come on here and bash me for using TNI. I know it is controversial and this is simply what is best for our family. So please refrain from bashing.

So if you have read my blog for long, you may know that we give the girls a targeted nutritional intervention called Nutrivene-D. Basically in so many words, it is a compound that is specifically formulated to help the body of a person with Down syndrome ... which means less DNA damage, less oxidation and a healthier lifestyle for my girls.

When Payton was younger, we used to give her DHA oil ... which is Omega-3. For some reason, we never were good about giving it to her and it has sat in our fridge. Fast forward to now, I have made a pact with myself to make sure that both girls are getting their DHA

And ... we have started giving each of them Gingko Biloba Extract in liquid form. I have read a lot lately about the use of Gingko helping kids with Down syndrome with improved speech and cognition overall. So we have been giving it to the girls for a few days now. I'm not sure if this statement is premature, but I have already noticed a difference in both of them.

*knock on wood*


After continuous failed behavioral hearing tests and flat lined tympanograms, we decided that it would be best to have an ABR ... a sedated hearing test ... done on both girls. Given their speech delays, I wanted to be proactive just in case there was hearing loss involved.
Nika's ABR was smooth sailing. The child is so chill ... almost too chill sometimes. They were able to place her IV without as much as a whimper. She woke up very quickly from her anesthesia and was very happy.

Nika's ABR results ---> No hearing loss ... good to go!
Payton on the other hand, not quite as easy. We warned them that placing her IV was going to be a fight, so they brought three nurses to try. In total, with the audiologist, there were five of us holding her down, while the sixth person tried to get a successful IV line. The poor nurse was so nervous, that the shake in her hand was making it a little hard.

It is sort of comical to me that people never believe me when I tell them how strong Payton is. She will fight, and she will fight hard. Even with the five of us trying to hold her down, she still gets loose. Crazy kid.

It took two nurses and two tries to get the IV line placed in her hand.

Fast forward an hour when they are finally ready to sedate her ...

They started giving Payton the anesthesia through her IV ... and nothing was happening. We knew from doing this with Nika that it should only take a couple seconds before she should have been out. Yeah, not so much. Payton is fighting like a horse and everyone is sort of panicking because the anesthesia is not working and Payton is just getting more and more pissed. We know the anesthesia is going in because it burns, hence the reason Payton is getting pissed ... we know she can feel it. I'm basically laying on her trying to hold her down ... I'm pretty sure my adrenaline has never pumped so fast in my life. It was ridiculous.

All of a sudden I hear one of the nurses say, "It infiltrated."

Are you fricking kidding me?!
By this point, I thought Kyle was going to lose it on them and I was so ready to tell them to forget it, that we were leaving. Ugh!

So they pull the IV out and give Payton a dose of Valium to try to calm her down. Then they tell us they want to try to get a line in her foot. Ugh. By then, the Valium had taken effect and they were able to get a line in her foot on the first try. Phew. They then successfully sedated her and started the test.

I seriously have never felt so exhausted in my life after all that. I had pain in my chest from all the stress I endured ... it was crazy! I told Kyle that after all that, they had better be giving me good news after the test! LOL.

Payton's ABR results ---> No hearing loss ... good to go!


  1. I'm very interested in the DHA Nutrivene and the Ginko. I'll be researching now! I am curious as to whether or not you consulted a doctor before giving these to the girls? I know that doctors vary with their opinions on things of this nature. With all of Carly's health issues, I may be apt to consult with her docs first. But it is sure something I plan on looking into.

  2. Please send me the dosage for the Ginkgo that you give Nika as Lila weighs the same. : ) Thanks!

  3. Hey Payton, nice shirt! I'm totally wearing my green buddy walk staff shirt. High five girl!

  4. so sorry for all you had to go through for payton's abr.... but i am SO HAPPY to hear that both girls have no hearing loss, awesome!!!

    where do you get the dha and ginko? where do you find a dosage chart... i am very interested in looking into this for whitney :) thanks for sharing your info with all of us!!!

  5. So, I want to know what improvements you're seeing!!! :) :)

  6. we did MSB for a month and I couldnt buy it again, but I owuld love to give him something like that again, Ive hear good things about ginko but dont know if its available here, the shipping costs are ridicously high.... sigh

    also i would love to know what are the changes you have seen.

  7. Wanting to know the changes here as well. Also I haven’t seen liquid ginkgo her, where do you get it, online health food stores..?
    We are potty training here as well though winter is making it hard to be consistent, but the child is ready.

    I knew you were going to say her IV wasn’t in right.
    Why, oh why do they do it this way? When my kids have had ops, under age 6yrs they always give them gas to drop off then hook them up.
    So glad the hearing tests were great news.

  8. Can I ask what differences you've already noticed w/the DHA and ginko? and how much ginko do you know how to give in the liquid form? Does it go by weight? I've read some on the ginko, but not enough I guess, been leery about trying it. I've given Kayla some chewable DHA but not consistently and need to get better about that!

    So glad they both received good results from the ABRs!

    and yay for the potty training!

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  10. I'm so curious too! I've been reading about vitamins and would love any information you would be willing to give if you have time.
    I love the newest pic of the girls! Adorable!!
    I don't have a blog, but do post on downsyn, my email is