Through Uncharted Waters

I received an email today from Greg Cole, a professor of Medicine & Neurology at UCLA. He works with Sally Frautschy on Curcumin and other things. He was emailing in regards to Longvida Curcumin and our use of it.

His email was a word of caution. A caution to realize that we are "experimenting" with Longvida Curcumin, as it is not clinically proven to help individuals with DS. There have been no clinical trials done on it's safety & use in people with DS. This is a great concern and word of caution and I totally understand where he is coming from and agree.

Whenever we use a supplement that is not clinically proven in people with DS, we are going through uncharted waters and "experimenting." We always need to be cautious and aware of what we are doing. Aware of any changes that are seen with a certain supplement, be it good or bad. And aware of the dosage we use, whether it is too high or too low, or just right.

We've been on the path of using various supplements and "experimenting" with Osiyyah since he was 8 months old (he's 4 1/2 years old now). The way we feel, is that we have to do everything we can for him. Even if something has not been proven in clinical trials. If the research looks promising, is something that looks like it'll benefit him, and as best we can tell is safe to give him, we give it a try. Of course we don't jump into giving him anything unless we have thoroughly researched and am convinced that it is safe & good to try.

It would be wonderful if clinical trials are done, but we can't wait for clinical trials to be done. My brother's life & understanding is on the line. He needs the help right now. This is why we, and many other families of children with DS, take the initiative to use certain supplements well before they have gone through clinical trials.

If we were to wait until something was proven to help children with DS, it would be YEARS and the most crucial time of Osiyyah's development would be gone. I want to do all I can to help my brother reach his fullest potential. That's what I determined from the time he was born and we knew he had DS. To do any less, would not be beneficial to him.

I am so incredibly thankful that we have taken many out of the norm, against the grain steps, because Osiyyah has progressed so well and benefited from them so much. I am convinced he would not be where he is at today had we not started this journey of research back when he was 8 months old. I know that because he visually, before our eyes changed and was a different child, when we started him on the first supplement back then. Granted, that first supplement is Nutrivene-D. But, still, there are MANY people who advocate not to use that supplement, because it is not "clinically proven." If we would've listened to many of the "professionals" in the DS world, we would not be giving Nutrivene-D. I'm so thankful we didn't listen to them.

There is so much that many families use with their kids with DS that are not clinically proven in DS. But, why are they used by so many families? Because someone took the initiative and stepped out of the box and decided to give that particular thing a try. Those who have taken the initiative into uncharted waters have benefited many families. To name a few, Dr. Turkel, Dixie Lawrence, Dr. Leichtman, Teresa Cody, and others.

Our family will always be thankful for the work of people like Dixie Lawrence & Dr. Leichtman in regards to Nutrivene-D. It changed Osiyyah's life. He is not the boy he was before Nutrivene-D.

Or mom's like Chris Hempel, whose twin daughters have Niemann-Pick Type C disease. That's how we found out about Longvida Curcumin. Longvida Curcumin has changed Osiyyah's life also. He can communicate & understand so much more than he was able to 5 months ago. It's amazing.

We will gladly continue to go through uncharted waters and step out of the box to be able to benefit my wonderful little brother and others with Down syndrome.

Qadoshyah

A Time To Dance

Osiyyah thoroughly enjoys dancing! We dance together quite often and he always has such a blast. One of my brother's was doing some remodeling to the bathrooms, so he took out the mirror. Osiyyah thought it was the coolest thing to dance and watch himself in the mirror :)!






Qadoshyah

Silent Auction At "From The Trenches of Adoption"

Valerie & her husband have biological triplets, adopted 2 boys with special needs from 2 different countries within the last couple years. They are now in the process of adopting 3 more children from Bulgaria.

Because the costs of adoption are so high, they are having a silent auction over at their blog From The Trenches of Adoption. There are a lot of nice items available at the silent auction.

As some of you may know, I have a small home business doing graphics & web designing, Country Girl Designs. I donated a Blog Makeover to the Silent Auction.

You can see all the items at this link (just keep scrolling down to see them all). You can see the Blog Makeover at this link.

Feel free to pass on & forward to anyone you know :)!

Qadoshyah

Our book & Longvida experience featured at Jaden's Journal

Noelle from Jaden's Journal & My Healthiest Life asked me to write about the changes we've seen in Osiyyah since starting Longvida Curcumin. While she was at it, she also mentioned our book (Down Syndrome: What You CAN Do) in her post.

You can check it out at this link ~ "Is Curcumin A Breakthrough Treatment for Down Syndrome?"

Qadoshyah

Longvida Curcumin News

International Nutrition has started carrying UCLA's Longvida Curcumin. Each bottle contains 60, 500mg capsules. The price is $39.95, but INI is having a special introductory price of $35.95.

You can view the product by clicking here.

Here is some more changes we have seen with Longvida Curcumin over the past month:

9/28/09 –

Osiyyah has said a few new words lately. He started saying “Hooee" (one of his sister's nicknames) He can say it really well, unless he starts getting excited and saying it in a fast tone and then it comes out as “hooweewe" or "weewee" ;).

He said “Oops” this morning during speech very well. But, he could only say it with the “p” sound in the middle if I slowed him down and made him say it real slow. Otherwise it was just the “s” sound at the end.

10/28/09 ------ Deeper Progress:

We have continued to see progress and I’d call it “deeper” progress now, as we are into it farther.

Osiyyah asks questions all the time – like “Why?” and “Who?” He has never been one to ask “Who does this belong to?” or “Why are we doing this?” etc. So, it has been neat to have him asking those types of questions. He also asks “What?” when he wants to be sure he’s heard something right or something along those lines. Today (10/28) he started asking “Do?” for “What are you doing?” or “What can I do?”. Wow, that is simply amazing!! I was shocked to hear him say that, as I had never heard him say that before!

Qadoshyah

Straw #3

Sorry for the long break between posting!

At our last speech therapy appointment, the ST suggested that we move Osiyyah up to straw # 3. He had been at #2 for awhile and it was time to move on. So, we decided to move up to #3 and I'm glad we did. I have noticed more improvement in drinking with that straw since we started it.

In case someone is not familiar with what I am referring to when I say "Straw #3" I am referring to the Straw Hierarchy from TalkTools/Sara Rosenfeld Johnson's Oral Motor (Placement) Therapy Program.


The straw hierarchy works on lip close, tongue retraction & lip rounding. In the above picture, Straw #1 is on the left & it goes to Straw #8 on the right (they are in order from L to R). With Straw #1, it takes a little bit longer to "master" that straw than some of the others. Straw #1 has a long tip before the tongue block. As the child is able to drink out of the straw better & better, 1/4" is cut off of the straw, until there is only 1/4" of straw left above the lip block. This will encourage the child to suck out of the straw using his lips, rather than his tongue. By using his tongue, that encourages tongue protrusion and not tongue retraction. Using his lips, it encourages tongue retraction, lip closure & lip rounding.

As to where to get Talk Tools Straw Hierarchy, click here.

Straw #3 is quite a tall straw! It looks kind of funny in the cups Osiyyah uses:




Qadoshyah

Josh & Bernadette's Wedding

Josh & Bernadette, both have Down syndrome. They were the first couple with Down syndrome to be married in Tennessee.

There are a couple videos of their wedding & reception at the link below. What a cute couple and beautiful videos!

http://andycamphotovideo.com/scarritt-bennett/josh-bernadettes-wedding-at-vanderbilts-scarritt-bennett-chapel-in-nashville/

Qadoshyah

Buddy Walk: O's Ranch Hands

Wow, last week flew by! I just had time to sit down and answer a few emails, but not to get a blog post up! We picked my grandma up at the airport last week. She flew in from California and is visiting for a couple weeks.

The day we picked her up, our local DS association (DSAT) had their annual "Kick it off Party" for the Buddy Walk. The party was at Pump It Up. We got there kind of late, but still had a BLAST!

The Buddy Walk was yesterday (Sunday). DSAT has a great turn-out and every year their walk grows! The walk draws 2500+ and this was just the 7th annual walk. DSAT does a great job of putting on a wonderful walk and raising awareness about Down syndrome. This was the first year we actually did the full thing (last year we were only there for the last 30-40 minutes), and it was great. We even got to do some dancing while we were hanging out :). Here's a couple pictures from the day:




Hopefully I can post more later . . .

Goodnight,
Qadoshyah

Coming . . .

I know I've majorly slacked in getting another blog post up. I haven't had much time to sit down and do any blogging. But, I have two blog posts that I want to put up, so hopefully I can get to them between tomorrow and the next couple days :).

Goodnight!
Qadoshyah

Helping

My brother was born into a large family and never put off to the side. We've always treated him just like anyone else in the family, expected & encouraged him to help and do what the other kids do. Of course there are certain things he can't do as well, or it takes him longer to do, or he just isn't able to do yet, but those are few and far between. . . especially as he has gotten older.

If we didn't include him in everything and encouraged him to do things, I don't think he would be as far along as he is. We've never put any limits on him and he's always done well.

If he wants to do something, we let him try. If he thinks he can't do it, he is encourage to try some more. If he absolutely can't do it, then we will help him. But, he always gets so excited to be able to help and do things like the other kids.

He helps the kids empty the trash cans that are around the house. Of course he lags behind a little in keeping up with them running around the house, but he gets a kick out of helping. He empties the dishwasher all by himself and knows where just about everything goes. The dishes aren't necessarily put away perfect. The silverware may just be thrown in the drawer and not sorted, but at least he put it where it belongs. Someone will come straighten it up.

The other day I had Osiyyah & his twin sister, Yophiyyah, out in my bunny barn helping me fill water bottles, feed the kittens, feed the bunnies, hold the new day old baby bunnies, etc. Yophiyyah will typically fill the water bottles while I am feeding if she is out there. This time, Osiyyah wanted to fill bottles. So, I told him to find the bottles that needed filling and fill 'em up.

He took the bottles off that needed filled, had me open them and then he tried to fill them all by himself. Now, it's kind of a hard job, so he was not able to do it without someone's help. Yophiyyah offered to help, so he and her pushed the water jug spout in while the bottle filled up. It was so cute to watch them both work at it together and succeed in filling up the bottle!

Today I explained to him what the bottles looked like that needed to be filled and what the bottles looked like that were full. He'll get the hang of it soon, Lord willing.

And, since we're on the topic, here is a picture of him & his sister filling the bottles:


I think living on a farm has been even more beneficial to Osiyyah. He enjoys helping with all the chores and animals, so it makes him be more interactive and work more.

He waters the garden when everyone else is weeding it or picking stuff. He doesn't only water it though, he also waters himself (i.e. turns the hose towards himself), LOL! But, he has a blast doing it!

All this to say, don't put limits on your kids. Encourage them to do all they can and they may just surprise ya and succeed!

Qadoshyah