Thursday, December 29, 2011

"Kids Go!" as performed by Adam & Levi

Tonight is the first time any of us heard this song. We played it twice for the boys and got quite a performance!

It is a song by "They Might Be Giants," a favorite of Wes'. His sister got it for him, but, as you can see, we are all enjoying it!
video

Wednesday, December 28, 2011

Vitamin Therapy for People with Down syndrome: What’s All the Controversy About?

Since Levi was born, I have been researching what actions I can take to maximize his potential. There is a lot of controversy over using vitamin therapy for people with Down syndrome. It is a polarizing topic. Parents are either strongly in favor or strongly against it. Some parents have made extravagant claims about supplements even taking away the facial characteristics associated with Down syndrome. Others say that vitamin therapy for children with Down syndrome is a waste.

Just like with other topics, when I search for information, I like to learn all I can, synthesize my findings, and use the beneficial information that works for me. I try to sift out the crazy and keep the good when it comes to controversial topics such as this one because it is hard to find any information that is balanced. At the bottom of this post, I have put a few links to websites that I have found especially interesting. There is a LOT of information out there.

I am currently reading “Down syndrome and Vitamin Therapy” by Kent MacLeod. My path to this book started with a recommendation from a visitor at our church. Her son is 16 years old, has Down syndrome, autism, and such serious eye problems that he has a service dog. The mother recommended a supplement that she gives to her son. She said he very rarely gets sick and has seen a big difference in him since he has been taking it. I checked it out online and ordered the same for Levi. (The dosage changes with a person’s age in case you’re wondering why I ‘d give him the same supplement as a 16 year old.) Kent MacLeod is the one who formulated the supplement.

In his book, he states that the extra chromosome in Down syndrome is similar to a factory worker who works twice as fast on the assembly line than the other workers. The result is too much of some materials and too little of others. The entire process is affected. Research shows that there are enzymes in the 21st chromosome that are overly active in people with Down syndrome. Children with Down syndrome also have inadequate levels of zinc, selenium, vitamin A, and vitamin D. Supplements can supply people with the nutrients they are missing or cannot get from food. They can also give people nutrients the body should make on its own but cannot because “essential cofactors are missing.” Children with Down syndrome have altered levels of nutrients and excessive illnesses, and I, as a parent, want to do what I can to improve my child’s health. I have read about people constantly doing blood tests on their children and intricately giving supplements to keep vitamin and nutrient levels in check. I personally wouldn’t want to put myself or my child through such a rigorous process., and have no idea what that would cost. But I do believe in the nutritional benefits of supplements. Just as I took prenatal vitamins to give my body what it needed during pregnancy, I think Levi can benefit from getting certain vitamins and minerals that he needs. The pediatrician just recommended probiotics to help with Levi’s extreme gas pains, and, of course, I will be getting some for him once I decide which ones are best.

Kent MacLeod says, “Treat the problem, not the Down syndrome.” That’s important advice. Chronic bowel problems can be helped with digestive enzymes. It doesn’t matter if the bowel problems are the result of Down syndrome or not. Digestive enzymes can help either way, so why would we keep these benefits away from our children just because they have Down syndrome and digestive problems are expected? The same goes for memory problems, excessive ear infections, and the propensity to get leukemia and Alzheimer’s.

The supplement Levi is on is called MSB Plus. It isn’t cheap (about $100 for a year’s worth for his dosage), but neither is the gas it takes to get him to the doctor’s office all the time for repeated infections. (By the way, “Down syndrome and Vitamin Therapy” has a whole chapter devoted to antibiotics and infections. The information is well worth reading if you are like me and have had your child on antibiotics over and over again for infections.) And I would pay about any price to make sure Levi has clear, understandable speech. This, in part, comes from good hearing, which he will not have if he experiences excessive ear infections.

MSB Plus is just a powder that gets mixed into any drink. It comes in different flavors, and Levi doesn’t mind taking it at all. One tiny little scoop a day is all it takes. He used to be constipated all the time and would have a hard, uncomfortable-to-pass bowel movement only every 3-7 days. He has a soft bowel movement every day now. He has been taking MSB Plus for about two months and the bowel movements changed within a week. His energy has improved, and I have had several people (who didn't know we have started something new) comment on Levi looking healthier and being less lethargic.


This is my personal journey I am sharing in hopes of answering some questions for others and to give some insight to family and friends about part of our journey.
Some Articles Showing Both Sides of The Controversy (all of which are pretty extreme to one side or the other):

Down Syndrome: The Nutritional Treatment of Dr. Henry Turkel, M.D.

Multi-Nutrient Formulas and Other Substances as Therapies for Down Syndrome: An Overview (The authors are against vitamin therapy)

Nutritional Supplements for Down Syndrome: A Highly Questionable Approach
A rebuttal to the above article

An Interview with Dixie Lawrence

Saturday, December 24, 2011

We Had Ourselves a Merry Little Christmas


This Christmas was the most exciting yet. Adam was old enough to really “get it” for the first time. It was fun for us because it was fun for him.

Although I had hoped to go through the boys’ toys a couple weeks ago, it worked out well to wait until Christmas Eve. Adam gathered up some neglected, yet like-new toys to give to Santa, and I added a few from Levi’s room. Here’s the letter I transcribed for Adam while he told me what he wanted to say.

"Dear Santa,

Do you know what this box of toys is for? Taking to other children. I don't play with them anymore.

What does Mrs. Santa Claus do? I want to know if she comes to our house or not.

Santa Claus, I want to know when you come to our house. I like Caroline so much, and Mommy and Daddy. And I like our house.

I'd like a star to go on the top of the Christmas tree because that's better.

Be careful.

Love, Adam"

(The toys will be going to Levi’s occupational therapist, who will be passing the toys along to some families in need that she works with.)

A special friend made the boys this adorable plate for Santa’s cookies. It even has the boys’ names on it (which are covered up with chocolate chip cookies in the photo). Adam decided that Santa needed chocolate milk so we made a special trip to the store on Christmas Eve.


I loved watching his sleepy eyes take in the magic on Christmas morning.

Levi was mostly interested in the tissue paper from his gift bags, so I was glad we didn’t get a lot for him this year. We hardly gave Adam anything in years past, and he has survived quite well ;)

While watching Adam, I was reminded of some of my favorite holiday traditions as a child. My dad worked on Christmas Day every year I can remember. Unfailingly, we would run out of something, and one of our parents would have to run to the grocery store on Christmas Eve. My brother & I always tagged along, anticipating the magic that was about to take place. While we were gone to the store on Christmas Eve each year, Santa never failed to visit our house! When we got home, our gifts from Santa sat unwrapped, in front of the tree.

Just before I left for Texas, we got one of the best presents ever! Levi’s Medicaid approval letter!!!!!!! I now have to write out a weekly schedule for Levi in 15-minute increments for his waiver to go through, but after this last step (which our case manager has never had to do before), the budgets are usually finalized within a week. This has been a LOT of work, but it will all pay off. We already got a refund from the pharmacy since the Medicaid card backdates to when we were approved for the waiver. I am really wishing we had this last year to help with all of Levi’s expensive hospitalizations and trips to the ER, but the bright side is that he is breathing much easier this year. I guess it is a good thing to have Medicaid yet not need it as much as we did before we got it!

I am anxious to get the tree put away, get the new toys in their places, and get back to a daily routine. Yesterday, I finally got iCloud set up on my Apple devices. It is amazing that now my address book and calendar information (that I only had on my Mac) are now also on my MacBook Pro (laptop) AND the iPod Touch!

Hope your Christmas was merry and bright. I am working on my Tuesday Tidbit but it may not post until late tomorrow night (or early Wed. morning). Hope you’ll stop back by soon!

Merry Christmas from Levi & Adam!






Friday, December 23, 2011

Poem: Special Needs Moms




I am considering making a youtube video of this poem with music and photos. If you want to be a part of it, send me photos of you & your child to vernyvern7@yahoo.com. I would especially like pictures of kids doing therapy & reaching milestones. Thanks!

Wednesday, December 21, 2011

So today is our 15th anniversary. The florist already called to make sure I'll be home for my annual bouquet delivery. I made yet another sappy slideshow (but with an upbeat song this time!). But the meaning of this day? The meaning of this day is huge. It is deep. It is touching. I love this man, and I know that he adores me...with all of my shortcomings, bad decisions, and faults. He loves to see me happy. I am blessed...every single day, I am blessed to share my life with this man. He brings me closer to God. He makes me laugh when I don't want to. He keeps me grounded. There is no other person I would ever want to raise a family with. I am grateful and look forward to many more years with my best friend by my side.
video

Monday, December 19, 2011

Inspired

I know it has been awhile since I have posted anything. There have been some ups and downs (and deadlines) with work. We are in the final stages of getting Levi's waiver and Medicaid card stuff complete. I have been doing a lot of reevaluating about a lot of things, and I have been doing quite a bit of traveling. Today is my first day home since last Monday!

I am back on the blogging scene and plan to be more devoted to posting again. I have been inspired to do more digital scrapbooking after finding out that Cathy Zielske has a blog!! She was the genius behind "Simple Scrapbooks," which has been out of print for some time. I was giddy when I realized she is now sharing her stylin' scrapbook pages and fun personality through her blog.

I have completed five digital scrapbook pages since I looked around on Cathy Zielski's blog yesterday and will post all of them here while I do some catching up with you!

Last Monday, I flew to Houston to attend a holiday luncheon for work. I know, it seems strange that I live over a thousand miles from my work, but it is true! And since Levi can still fly for free...

He got to join me for my trip!

The best part about going to the Houston area, is seeing my friend Amy. We spent the night at her house Monday. She (and her awesome family) watched Levi for me during the luncheon.

Here are her wonderful kiddos with Levi.

Amy & I are hoping to be in-laws someday when this one and Adam get married!


The luncheon was a blast.


A new tradition is that the "newbies" have to sing a song for the rest of us each year. Austin did a great rendition of "Never Gonna Give You Up" by Rick Astley.


I got to have dinner with a dear friend that mentored me during my first years of teaching. I didn't bring my camera with me because Levi had the biggest blowout of a diaper EVER just before I saw her. I was so thrown off that I left my camera in the rental car...and it takes a lot for this girl to forget her camera! That was one serious diaper change!!

I also was blessed with some time visiting a former student of mine while we were in the area. She was in my class when I taught seventh grade (which I haven't done in twelve years!). She now teaches special needs children and is crazy about Levi.



After my time in the Houston area, I drove down to Corpus Christi to see my family. My brother took me looking at Christmas lights in his dune buggy, which is now street-legal.




My sweet niece, KayLee cannot get enough of Levi. She is such a sweetheart.



The rest of my brother's family... I had a great time with all of them. I feel right at home with my sister-in-law, Rachel, and my niece and nephew are a joy to be around. Kamron loves playing games, and so do I.

My parents sure enjoyed this boy!



Levi & I flew back Friday and went straight to Wes's parents for an early Christmas at their house. I will share more pictures and scrapbook pages of our time together in another post. Here is the boys' favorite gift...


Friday, December 9, 2011

The Reason for the Season?

The tree is finally up. I LOVE decorating the tree and have a hard time turning the lights off, even in the middle of the day. It makes me happy.
Adam decided to help me wrap gifts today... I set the roll of paper on the floor, and went to get the gifts. I came back to an unrolled roll of paper. Since it couldn't really be used for gift wrapping, I let him draw on it, which he thought was pretty cool. Then I decided to wait until he went to bed to wrap gifts.

I think there are people that let the Bible change them and those that instead, try to change the Bible. The Christmas holiday is no different. This poem was read during the sermon this Sunday, and I had to share.

It's Not In the Bible

As we travel through life, from day to day,
We hear a lot of things that the Bible doesn't say.
They tell us it happened on a cold December morn,
But the Bible doesn't say when the child was born.
The wise men came from the East- to make a call,
But the Bible doesn't say "There were THREE" after all.
It's true they brought gifts, and raced to see the sight,
But the Bible doesn't say they rode CAMELS that night.
It's a well known fact that the angels did sing,
But the Bible doesn't say that the ANGELS had wings.
The angels worshiped Him, and the shepherds did the same,
But the Bible doesn't say that REINDEER came.
The Bible doesn't say "When they made the Egypt flight;
that Mary rode a DONKEY and Joseph held a light."
It's fine to give gifts and to visit and to play,
But don't think of Christmas as a Bible holiday.
-Author Unknown

Don't get me wrong. We celebrate Christmas. There is a tree strung with lights in our home. There are stockings hung. We have an "Elf on the Shelf" that Adam searches for every morning. We listen to Christmas music all the time and sing along. What you will not find is a nativity scene in our house. They are not Biblically accurate. You will not hear us talk about Christmas as the celebration of Christ's birth. That is not Bibically accurate.

I understand that there are people out there that disagree, and I am not offended by that. I don't see it as disagreement with ME. It is the Bible I agree with, and I have had many conversations with people on other topics and what the Bible says. Some people just don't choose to read it, and others don't choose to agree with what they read.

Jesus is the reason for EVERY season. His birth is significant all throughout the year. I hope that everyone that celebrates Jesus will read the inspired Word of God and follow it completely. He is coming back, you know!

MERRY CHRISTMAS!!

Tuesday, December 6, 2011

Temper, Temper!


Adam is such a sweet, polite little guy. When he acts out, it is really noticeable and upsetting to me. I am working to find a balance between ignoring the negative behavior and helping him to work through his feelings. He doesn't throw long, drawn out tantrums or anything like that, but I want to help him through this stage and give him alternatives.

Becky Bailey is the author of some excellent books on child behavior. I really respect the loving approaches she recommends and the way that she helps her readers see the world through the eyes of a child. She builds compassion as she gives tips on what to do and points out how similar some of our behaviors as adults are to the negative behaviors in children. How many of you have ever thrown your own sort of tantrum or have pouted about something?

In the article, "How to Handle Temper Tantrums," she writes that the way parents respond is the key. I know not to give in to a child's demands because that encourages more tantrums and have had success ignoring some negative behaviors, but she says doing nothing can allow the tantrums to evolve as the child grows. That really made me stop and think. A child that yells and shouts as a toddler is likely to become an older child that yells hurtful words or an adult that yells cuss words and huffs and puffs all the time. I can't just ignore it. I need to teach him how to handle his frustrations.

She says "Discipline yourself first and your child second." Calm yourself. Become as calm as you want the child to be. Then explain what you see, state the emotions, and the desire. For example, here's what I should have said to Adam earlier today when he kicked the wall because he didn't want to take a nap. "Your hands are in fists and your face is all scrunched up like this (show the expression to them). You seem frustrated. You want to keep playing and it's time to lay down for a nap." Then you end by giving the child "two choices that are both acceptable to you." Like, "You may sleep on the floor or on your bed. Which would you prefer?"

Offering two positive choices works so well. Adam refused to clean up some blocks he dumped on the floor the other day. I couldn't really think of any choices, so I finally said, "Do you want to pick them up with your fingers or your toes?" His posture totally changed as he smiled and exclaimed, "Toes!" He promptly picked up his blocks...with his toes!

What I need to work on is calming myself and remembering to state his feelings for him & empathize with him. I'm so glad I read Becky Bailey's article to remind me of what I need to be doing. View the full article by clicking here.

Friday, December 2, 2011

Have a great weekend!

Each time we come into the house, I wish Adam had a place to hang his coat that he could reach all by himself. We have a hall closet just beside our entryway table, which is great...except we come in through the garage, not the front door. Plus, he couldn't reach high enough to hang his coat there anyway. So...I turned this blank area beside the back door (where Adam's art easel is)...

into this...

Thanks to Wes for using anchors to hang the shelf for me (it is heavy) & thanks to Michael and Jayme for finding it sitting out with someone's trash, and giving it to Tammi, who in turn, gave it to me! It has been sitting for a little while without a place to go. It ended up coming in very handy!

I know the wreath is fall-ish. Haven't gotten the Christmas boxes down yet! (Hoping to do so soon) But we are still anxiously awaiting Santa's arrival!


Want a copy of this fun countdown calendar? Click here!

Have a great weekend!