31 for 21: Day 3 {Big Mama}

I have always known Payton was a little on the husky side, but after having to weigh her the other day and realizing she ... my 3 year old ... had hit 40 pounds ... uhh, I've grown a little concerned. That is 90th percentile for weight on a typical growth chart and she is off the charts on the Down syndrome growth chart. Sigh.

The child is solid as a rock. She isn't fat ... per se ... just solid. People often times go to pick her up and they just about put their backs out, because they don't expect her to weigh as much as she does. I guess I shouldn't be surprised, given how big her brother is ... and I guess I should be happy since kids with Down syndrome tend to be on the smaller side. Like her sister. But I'm a little concerned that she will move into obesity as she gets older ... and I don't feel like I'm being unrealistic by saying that, especially since she is destined to have a crappy metabolism, courtesy of that extra chromosome.

Today I took Payton to Target to get her more clothes for school, because nothing we have seems to be fitting her. Even some of her 4T stuff that we just bought ... it is ready to be handed down to Nika, so she can wear it in like 2011. Ha.

So there I am, standing in the middle of the big girls section, trying size small on her ... that is like a size 6! Seriously. I was really trying hard to fit her in the x-small, but I'm afraid that once it is washed, it will no longer fit. It was quite depressing, actually ... and I sat there and had my pity party. Until my friend McKenna called me and told me to get over myself, that having a husky child is much better than having a tiny child. Then I reminded her I have one of each ... one on each end of the spectrum.

No matter what, these stubby little fingers are still my favorite!

31 for 21: Day 2 {The Creed}

After Payton was born, I found The Creed for Babies with Down Syndrome somewhere online. It has always been a favorite of mine ... and I like to read it every now and again. More importantly, I like to share it every now and again. I love the message it sends and I only hope that others take it to heart and share that message with their children.

Now that my girls are getting older, their differences stand out a lot more to others ... especially kids and their peers. And that, for me, is the hardest part. I have to deal with kids asking me, "Why doesn't she talk?" I have to deal with kids staring at my girls because they look different or act different. You get the picture.

While I am a pretty strong person and I can handle these things pretty well, I have to admit that sometimes it breaks my heart. It breaks my heart that my girls are seen as being different. It breaks my heart that they might not ever be fully accepted by their typical peers. And it especially breaks my heart knowing that right now, my girls don't know the difference. They don't know that they are already being judged by other kids ... and society as a whole, really.

That ... my friends ... that breaks my heart.

So please, read this creed and if you feel led, sit your kids down and explain differences to them. Put yourself in my shoes and please help me spread awareness and acceptance. I'd do it for you!

The Creed of Babies with Down Syndrome
My face may be different
But my feelings the same
I laugh and I cry
And I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above
To Him I'm no different
His love knows no bounds
It's those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I've chosen
Will help me get started
For I'm one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I'll do it as you do
But at my own pace

31 for 21: Day 1 {Welcome to Holland}

October is National Down Syndrome Awareness Month. Each year, Tricia over at Unringing the Bell hosts the Get It Down: 31 for 21 challenge. I am not usually very successful at sticking to this, but alas ... I will try again this year.

The rules: It's simple. Commit to post on your blog at least once a day for the 31 days of October ... which is DS awareness month. You can write about DS, or not ... you can have a family member or friend with DS, or not. Just choose to do it and do it. Raise awareness of Down syndrome by taking part. It's that simple.

Ahem.

Almost four years ago, I was thrown into a new world. A new world where I didn't know anyone and didn't know anything.

That new world was the world of Down syndrome. It took me a minute, but I came to realize that there is absolutely no other world I'd rather live in.

Welcome to Holland by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

More on Gingko, DHA, Nutrivene

After my last post, I received comments and lots of emails with questions. I'll try to tackle some of them here, but I encourage everyone to do their own research too. I am a research nerd when it comes to my girls and quite honestly, I think we all need to be.

We use Nutrivene (daily supplement and nighttime formula only ... we can't use the enzyme due to reflux), Ginkgo and DHA/Omega 3 ... as well as Juice Plus, in gummy form. I am looking into adding Vitamin D into the mix, as that is also now being recommended as an additional supplement. I also read something the other day that talked about taking Vitamin D3 as an alternative to the flu shot, since there is so much drama going on concerning the flu and H1N1 shots. That in and of itself is a whole other post.

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So ... when I first started researching Nutrivene, I quickly learned that the use of it is something that is pretty controversial. I have seen, heard and been involved in many arguments about the use of it, but at the end of the day ... this is what my husband and I decided was right for our family and that is that.

The biggest argument I hear about Nutrivene is that "there are no double blind studies". First off, I'd be surprised if there would ever be a double blind study done. It is far too expensive to do such a thing when you are working with such a small population. Do we really need a study done on people anyway? Why can't we look at the numerous studies that have been done showing the different chemical imbalances and "out of whack" things that people with Down syndrome do have going on inside of their bodies? There is enough long term research that has been done to satisfy me ... all of it shows great results.

Nutrivene is comprised of vitamins that are specific to the body of a person with Down syndrome. For example, there is extra zinc because they tend to have low zinc levels; there is no iron because they tend to have high iron stores. It is my view that if the vitamins don't hurt my daughters, then why not? We do regular blood testing to monitor their blood levels ... but even so, never have I ever heard of anyone finding that their child had too high of levels while taking Nutrivene.

So you may be asking, "Have you seen a difference in your girls?" If I had a dollar for every time I've been asked this question, I'd be a millionaire. Payton has been on Nutrivene since she was three months old. I did notice that she was much more alert after we started her on it ... I liken it to waking her brain up. There have been times that she has been off the Nutrivene for a few weeks here or there, but I have never noticed a huge difference in her externally. Nika was also started on Nutrivene as soon as we brought her home. Since we didn't know her well at that time and she was experiencing a lot of adjustments in her life, I really have no before comparison for her.

Many, many people think that we use Nutrivene because we think it will help the girls talk, or help them walk sooner, or whatever. While it might help with some of those things ... I have no idea, really ... we really use Nutrivene for what it does on the inside ... getting external benefits would be a plus, for us. The extra chromosome that comes courtesy of a T21 diagnosis causes havoc inside their bodies. It causes oxidative damage to DNA, which in turn leads to many things, including earlier onset of Alzheimer's Disease.

A few random things to ponder regarding Nutrivene ...

* Nutrivene does not need to be FDA approved because it is a vitamin and the FDA won't approve it. But, did you know that Nutrivene is manufactured in an FDA approved/inspected pharmacy and that all of their guidelines are under FDA guidelines.

* Children with DS produce too much Superoxide Dismuatse (SOD) which then turns into hydrogen peroxide and starts killing cells. They have more SOD and their body cannot take care of it, like us, because the SOD enzyme is on the 21st chromosome. Iron aids in the SOD process. Thus, by giving added Iron, it produces more cell death. Cell death starts occuring after 4 months of age. So, one thing that you do not want to do is give added iron, unless of course the child is iron deficient. Here is a link to a very good article about Iron, SOD and that process.

* A lot of people with DS are also deficient in zinc. Zinc is, of course, a very big part of the immune system and if they are zinc deficient, then they will have a weaker immune system. It also has a lot to do with thyroid functioning properly. There are zinc ions that are connected to the thyroid and its functioning properly. There is still more research that is being done on zinc. Selenium also plays a big role with zinc.

* Amino acids and antioxidants are very good for people with DS also. They lack some of these and so the supplements give them this as well. Antoxidants play a big role in counteracting the SOD process and so do amino acids. There is an amino acid that people with DS are normally low in and that amino acid plays a big part in helping to deal with the SOD process. Thus, people with DS have a whole extra enzyme of the SOD (since it is on the 21st chromosome), but still have "normal" levels (levels that we have) of this amino acid, thus making it hard for their body to deal with this stuff.

* Alpha-Ketoglutaric-Acid is a big proponent in cartilage and helping with stability to the cartilage. By supplementing this, they have found that it helps with muscle tone.

* The nighttime formula is not necessarily to help them sleep, it is to promote growth while they are sleeping.

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With regard to Gingko ... I have heard that it is only recommended for kids age three and above. That said, I know people who have infants with Down syndrome on it. To each their own.

So ... the changes we have seen ... my girls have only been on Gingko for a little less than a week and yes, I'm seeing the difference ... mostly in Payton because she is more verbal than Nika.

Payton - the biggest thing is her speech. She has turned into Chatty Cathy, even if sometimes using approximations. She definitely is speaking more without me having to prompt her and she is giving me 2-3 word phrases that I can understand.

Examples: Saying "more please", whereas before she always just signed it. The other morning after Nika peed on the potty, Payton was right there with us and I said to Nika, "Good girl!" Just then, Payton said it too ... "Good girl!" WTF?! Where did that come from?! Just a lot of things like that.

Today was the first day that Payton had a private speech session since being on Gingko. Her ST about fell off her chair with how chatty Payton was ... and with how much longer Payton was sticking to certain tasks (i.e. reading a book). She mentioned that today was the longest that Payton has ever read/played with a certain book without moving on to something else. Concentration, I guess is the word I am looking for.

Nika - I do think I notice a cognitive aspect going on with Nika. For one ... and I totally think this is related ... she has not really been wanting or needing to suck on her fingers. You might think I've totally fallen off my rocker, but I really think having a clear mind is helping her with this. She is able to focus better on the task at hand, as well as finding other things to do. I know her well ... I can just tell.

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Did we consult a doctor prior to giving our girls these supplements?

Yes, we did. Did they all agree? Not necessarily. Were any of them dead set against it? No.

We take our girls to see Dr. Leichtman, who is an advocate for the use of TNI ... and pretty much a Down syndrome guru, for lack of a better characterization. We have consulted him in the use of all the supplements and he has done extensive research on them.

I also have discussed the supplements with our local geneticist, who is neither here nor there. She agrees that if they are only vitamins, then what can it hurt as long as we are monitoring blood levels. Interestingly enough, she is always asking me questions about things I've noticed. She ... and many other doctors ... would love to see the more in depth studies, but like I said ... I don't think it will happen anytime soon.

Where do you get the DHA and Gingko?

I linked to them up above. You can get them various places, or directly from Nutrivene's website. I get all my dosing information from Dr. Leichtman, because it isn't always what the label says for our kids. If you are interested in beginning this regime, I highly suggest that you join the DSTNI Yahoo Group ... there are plenty of knowledgeable people that post there, including Dr. Leichtman.

As a quick reference for Gingko ...

*1000mg of Ginkgo Extract equals 80mg of Gingko Biloba (we actually use the extract)
*Ginkgo Biloba dosages have increased to 5.5 mg per kg (2.2 pounds) of body weight

For DHA ... when Payton was younger, she received 1/4 tsp of the DHA liquid. Now, she gets 1/2 tsp, which is the dosing information on the bottle. I'm not exactly sure when they move up to 1/2 tsp or what the guidelines are on that ... need to check on that. Either way, both my girls are getting 1/2 tsp for now. I have heard info from some developmental pediatricians, however, that they are recommending an even higher dose. Not sure ...

What about MSB+?

I personally am not a fan of MSB+, but that is just me and the research that I have done. I know there are lots of people who use it because the dose is smaller and it tastes better, but ...

MSB+ has a few things in it that are either not good for people with DS or they already overproduce it. For example, it has iron it. It also has L-Cysteine in it and generally people with DS overproduce this amino acid, which means you are then dealing with a toxic product. From the research that has been done so far, they say not to supplement with it until it is proven to be safe.

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So ... all of this said, there is so much more to say. I am positive that there are people reading this and disagreeing with me, and that is okay too. If it remains respectful, I welcome dialogue here regarding this topic. There are lots of parents wanting information, so if you have it ... let's give it to them.

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!"

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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. Thank.you.very.much.

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 every.single.day.

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*

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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!