Life On The Ranch: A Boy & His Bunny

O has a little bunny who is named "Leo." It was supposed to be a "she" and was named "Lily", but that changed, so HE is now named "Leo." Leo was also supposed to be a French Lop, but he turned out to be a French Lop cross (I think crossed with a breed called the Rhinelander). He's only 4 months old and already a big guy! 

O and him are so cute together.

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John Marrs Update

I got an email from Jenny the other day with an update on John Marrs and his website. His website link had changed over the years and she just found out that it had to be updated.

http://myplace.frontier.com/~ezlopin/johnmarrs/index.html

I had updated about John Marrs last year here. Below is Jenny's newest update:

John is a senior now. He just took part in the National Honor Society inducting the juniors. He will get to wear his honors sash one last time when he graduates in May.  He took Geometry this year. I was worried a little about that, but he has done himself proud. I talked with his teacher recently because they were going to do a unit on trigonometry. His teacher said that he hadn't had to modify anything for him all year, and he was wracking his brain trying to figure out how to get through trig, which he thought would be hard. John came home one day with a few problems done. I asked him how he did them, and he actually taught me how. He sailed through the unit.... 

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Tim's Place in Albuquerque - Man with Down Syndrome Owns His Own Restaurant

If you haven't watched this video about an Albuquerque, New Mexico restaurant called Tim's Place, you've got to watch it.

Tim is the owner of the restaurant and he just happens to have Down syndrome. He dances into work every morning, and gives everyone a hug when they come to his restaurant. He said he had always dreamed of owning a restaurant when he was a kid, and once he became an adult, his parents helped him fulfill that dream.

Their slogan is "Breakfast, Lunch & Hugs." Tim says the best part about it is giving people hugs, because "food is just food."

Everyone could learn a lesson from this. Pretty cool.




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Recipe: Gluten-Free Donuts!

My sister tried a recipe for donuts the other day, added some tweaks to it to make it gluten-free and they were a huge hit. They've been made at our house multiple times in the last week :). You wouldn't even know they are gluten-free. Easy to make and delicious.

Quick & Easy Old Fashioned Donuts

4 cups rice flour

1 cup sugar

1 cup milk

4 tsp. baking powder

1/2 tsp. salt

2 eggs

2 tbsp. oil

1 tsp. vanilla

Mix all the ingredients together in a large bowl.

 

Roll on a floured surface and cut with a donut cutter. If you do not have a donut cutter, use a canning jar lid or the like and then just poke a hole in the center.

 

Deep fry until brown. You can eat them plain, or coat with powder sugar, cinnamon sugar or whatever suits your fancy. 

We've done cinnamon sugar....

Chocolate frosted....

And of course plain, but I don't have any pictures of those :).


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Why I Don't Support the World Down Syndrome Day Conference 2013 at the United Nations

As most people in the Down syndrome community know, World Down Syndrome Day is March 21st every year (3/21). The United Nations has a conference every year.

As it is written on worlddownsyndromeday.org,

Down Syndrome International is delighted to announce that the World Down Syndrome Day Conference will once again take place on 21 March 2013 at the United Nations Headquarters, New York, USA.

This year's World Down Syndrome Day Conference is entitled: "Right To Work".

When I saw it again this year, I felt like I should say something. As much as I support Down syndrome awareness, I do not support the WDSD conference at the United Nations. You may wonder why, so I will explain below.

The United Nations has brought forth multiple treaties which are horrible and extremely detrimental to our freedoms in America. We'll just focus on the treaties involving families. One treaty is called the UN Convention on the Rights of the Child (CRC). You can watch a documentary on the CRC and the dangers of it here. There is also the treaty called the UN Convention on the Rights of Persons with Disabilities (CRPD). This treaty is a big reason I do not support the WDSD conference at the UN.

One might wonder what the CRPD is, as you may not have heard about it, or may not know the details of it. You can view the full treaty in PDF here. You can also view more about the UN Committee, who is responsible for and behind this treaty here.

Article 1 of the CRPD states the following,

The purpose of the present Convention is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities...

That sounds so wonderful, right? I mean, we want people with disabilities to be able to have the same rights as people without disabilities. So much of the treaty says things along these lines. No discrimination in education. No discrimination in healthcare. No discrimination in work. No discrimination in the community. Over and over again. And it goes on and on (37 pages to be exact). But....there's more to it.

Article 7, Section 2 of the CRPD states the following,

In all actions concerning children with disabilities, the best interests of the child shall be a primary consideration.

This is the main and biggest problem I have with it. I do not want a committee of 12-18 "experts" (as the CRPD calls them) to decide what they believe are the "best interests of the child." This completely takes away the rights of the parents, so that parents may easily be held liable for something they do or don't do. If this committee of 12 gets a report (as they are supposed to get from each country that ratifies this treaty) and there are things in it that don't fit with what they think is "the best interest of the child," then they change their recommendations and say what needs to be done.

People might try to argue and say this won't happen. But, read Article 23, Section 4:

4. States Parties shall ensure that a child shall not be separated from his or her parents against their will, except when competent authorities subject to judicial review determine, in accordance with applicable law and procedures, that such separation is necessary for the best interests of the child. In no case shall a child be separated from parents on the basis of a disability of either the child or one or both of the parents. (bold added)

 

The quote right above shows that the power is in the hands of "competent authorities" to "determine....that such separation is necessary for the best interests of the child." That is very bad news.

So, what if you have a family whose child has an allergy to a whole slew of foods? Or, a child who is homeschooled? Or, a child who has allergies to certain medications? Or, what if a family does not vaccinate? The list really could go on. The parents in these situations knows what is best for their child, therefore they take the appropriate measures. They make sure they eat foods which are good for them and they aren't allergic to. They make sure they don't take medications that they may have an allergy to. They teach them at home to make sure they receive the best education, because they might need a little extra help or have problems in school. They don't vaccinate their children, because they are concerned about the problems with vaccines. But, this committee of 12, or the "competent authorities" in the Country, who are the ultimate deciding factor on all of this could come a long and say these good things the parents are doing, which are for the "best interests of the child," are wrong and not "in the best interests of the child." They become the authority to constituate what are "the best interests of the child." They take away the rights of the parents, family & caregivers who actually do know what is best for the child.

It's sickening to me to see this. It sounds so good on it's face, but it's horrible. I love my brother with Down syndrome and I do not want a far away, international body of 12 so called "experts" to have the say as to what is best for my brother. Because, they.don't.know.

There are plenty more problems with the UNCRPD, but this should be enough to stop someone in their tracks and take a second look at this.

There is plenty of support and awareness for people with disabilities in the United States. Many of these "protections" this treaty calls for are already covered in the Americans with Disabilites Act. We are doing a fine job without the United Nations. And I hope, by God's grace, it stays that way.



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Life on the Ranch: Lily, O's Bunny

Little O had named one of my bunnies that I had kept as a baby a year ago or so, "Lily." It was kind of "his" bunny, but then he said I could sell her. So, after sometime, I sold her. He then was disappointed I sold her and said he wanted to name another bunny, "Lily."

I had an idea come into my head that we would get a French Lop doe (I've kind of always wanted one anyways), name her "Lily" and she'd be O's bunny.

He kept asking me when we'd get "Lily", but it took some time since we had to find the right one first. Well, about a month and a half ago, we found her. She ended up being a French Lop cross, but he likes her a lot, so doesn't really care. O is so cute to watch with her, as he is so gentle, caring and so concerned that she's always okay.

Lily's gonna be a big girl, but thankfully she is super mellow, so O has no problem carrying her around (she's already about 6 lbs at 11 weeks old!).

Hopefully we'll be able to train her to walk on a leash soon too. O's walked her on a leash once already, but she needed to grow into the harness a little bit more before we try again.


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8 Blessed Years

8 years ago this month, my life changed forever. O & his twin sister, Yo, were born. 

I was 16 years old at the time and had been running the house with my then 14 year old sister, Ez, because the twin pregnancy was tough on my mom. Finally, one Wednesday night, my mom went into labor, so down to the hospital we all went. After a long night, the twins were born. 

Ez & I had stayed with my mom in the hospital all night, so we were exhausted as we stood in the hall outside of the operating room waiting for the news of the twins arrival. Eventually the nurses wheeled them by us in a little bed. I remember their tiny little faces both staring up at us as they whisked them by. They were so small. So cute. And we were so excited for their arrival. 

Shortly after they were taken into the NICU, my dad came out of the NICU saying, "there is some bad news..." I know I've posted this before, but it's so clearly etched in my memory of their birth. I remember exactly where we were standing and I have a picture of that moment frozen into my head. After my dad said those words, in the second before he finished his sentence, my sister & I's hearts sunk, not knowing what he was going to say. My dad finished his sentence by saying, "it looks like the little boy might have Down syndrome." Our hearts were relieved and I felt like I could breath again. We both said, "that's not bad." 

And his diagnosis is not bad. I was completely clueless at the time as to the details of what Down syndrome was. In my 16 years of life, I had never once thought about having a sibling with a "syndrome" or special needs. But, was the excitement of having two new siblings going to change because one had a "syndrome"? No. It's just another step along this journey of life. And I determined to jump on the bandwagon with him and do whatever he needed and whatever we would need to do. 

I quickly learned a lot about Down syndrome. That first year there was a lot of learning that had to be done. And it had to be done quickly, because a little guys life and well being depended on it. 

Throughout the years, we've had our challenges. But, it's just part of this journey. I couldn't be more thankful that God put O in our life. I'm so thankful he was put into a large family, because it has been a tremendous help for him. Having so many "cheerleaders" around him all the time, has encouraged him to get to those milestones.

It's hard to believe O & Yo are 8 years old now. I remember not being able to picture what it would be like when he would be 5 years old, let alone 8. I remember when I first joined certain listservs and I would be getting advice from parents with "big kids" who had Down syndrome - their kids were 5, 8, 10 years old - and that seemed so far off.

It has been a blessed 8 years. O struggles with some things still, but is thriving. He is doing so well, it's truly a blessing. His biggest delay has always been his speech clarity, but most of us (who are around him all the time) understand him. He says full sentences, just needs help in clarity.

Seriously, I think a lot of people would be way better off if they had the blessing of someone with Down syndrome in their life.



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Life On The Ranch: Babies Everywhere

Well, there is new life on the ranch everywhere. Lambs. Baby goats. Baby bunnies and more. Here are just a few fun pictures of the babies getting to run around outside on one of the sunny days we had this week.

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Individuals with Special Needs Getting Married

On one of the Down syndrome listservs I'm on, someone share this sweet story of a man with Down syndrome and a woman with Hydrocephalus getting married: "When Bill met Shelley: No disability could keep them apart".

This story reminded me of the documentary we watched a few weeks ago called Monica & David. It's a documentary of a couple with Down syndrome who end up getting married. It was a sweet, really neat documentary to watch. We enjoyed the whole thing! I'll just share the trailer here.



The website for the film, Monica & David, can be seen here: MonicaandDavid.com. There are pictures on the site and also where you can get the full documentary. We watched the documentary on Netflix


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SimplyThick - Warning With It's Use in Infants - Causes Death

My friend forwarded this news article to me. While some of it may be old news, I thought this was important and I would share it. I know SimplyThick has been recommended and used with babies who have Down syndrome to help with reflux and feeding issues.

Warning Too Late for Some Babies
By CATHERINE SAINT LOUIS

Six weeks after Jack Mahoney was born prematurely on Feb. 3, 2011, the neonatal staff at WakeMed Hospital in Raleigh, N.C., noticed that his heart rate slowed slightly when he ate. They figured he was having difficulty feeding, and they added a thickener to help.

When Jack was discharged, his parents were given the thickener, SimplyThick, to mix into his formula. Two weeks later, Jack was back in the hospital, with a swollen belly and in inconsolable pain. By then, most of his small intestine had stopped working. He died soon after, at 66 days old.

A month later, the Food and Drug Administration issued a caution that SimplyThick should not be fed to premature infants because it may cause necrotizing enterocolitis, or NEC, a life-threatening condition that damages intestinal tissue.

Experts do not know how the product may be linked to the condition, but Jack is not the only child to die after receiving SimplyThick. An F.D.A. investigation of 84 cases, published in The Journal of Pediatrics in 2012, found a "distinct illness pattern" in 22 instances that suggested a possible link between SimplyThick and NEC. Seven deaths were cited; 14 infants required surgery.

Last September, after more adverse events were reported, the F.D.A. warned that the thickener should not be given to any infants. But the fact that SimplyThick was widely used at all in neonatal intensive care units has spawned a spate of lawsuits and raised questions about regulatory oversight of food additives for infants.

SimplyThick is made from xanthan gum, a widely-used food additive on the F.D.A.'s list of substances "generally recognized as safe." SimplyThick is classified as a food and the F.D.A. did not assess it for safety.

John Holahan, president of SimplyThick, which is based in St. Louis, acknowledged that the company marketed the product to speech language pathologists who in turn recommended it to infants. The patent touted its effectiveness in breast milk.

However, Mr. Holahan said, "There was no need to conduct studies, as the use of thickeners overall was already well established. In addition, the safety of xanthan gum was already well established."

Since 2001, SimplyThick has been widely used by adults with swallowing difficulties. A liquid thickened to about the consistency of honey allows the drinker more time to close his airway and prevent aspiration.

Doctors in newborn intensive care units often ask non-physician colleagues like speech pathologists to determine whether an infant has a swallowing problem. And those auxiliary feeding specialists often recommended SimplyThick for neonates with swallowing troubles or acid reflux.

The thickener became popular because it was easy to mix, could be used with breast milk, and maintained its consistency, unlike alternatives like rice cereal.

"It was word of mouth, then neonatologists got used to using it. It became adopted," said Dr. Steven Abrams, a neonatologist at Texas Children's Hospital in Houston. "At any given time, several babies in our nursery - and in any neonatal unit - would be on it."

But in early 2011, Dr. Benson Silverman, the director of the F.D.A.'s infant formula section, was alerted to an online forum where doctors had reported 15 cases of NEC among infants given SimplyThick. The agency issued its first warning about its use in babies that May. "We can only do something with the information we are provided with," he said. "If information is not provided, how would we know?"

Most infants who took SimplyThick did not fall ill, and NEC is not uncommon in premature infants. But most who develop NEC do so while still in the hospital. Some premature infants given SimplyThick developed NEC later than usual, a few after they went home, a pattern the F.D.A. found unusually worrisome.

Even now it is not known how the thickener might have contributed to the infant deaths. One possibility is that xanthan gum itself is not suitable for the fragile digestive systems of newborns. The intestines of premature babies are "much more likely to have bacterial overgrowth" than adults', said Dr. Jeffrey Pietz, the chief of newborn medicine at Children's Hospital Central California in Madera.

"You try not to put anything in a baby's intestine that's not natural." If you do, he added, "you've got to have a good reason."

A second possibility is that batches of the thickener were contaminated with harmful bacteria. In late May 2011, the F.D.A. inspected the plants that make SimplyThick and found violations at one in Stone Mountain, Ga., including a failure to "thermally process" the product to destroy bacteria of a "public health significance."

The company, Thermo Pac, voluntarily withdrew certain batches. But it appears some children may have ingested potentially contaminated batches.

The parents of Jaden Santos, a preemie who died of NEC while on SimplyThick, still have unused packets of recalled lots, according to their lawyer, Joe Taraska.

The authors of the F.D.A. report theorized that the infants' intestinal membranes could have been damaged by bacteria breaking down the xanthan gum into too many toxic byproducts.

Dr. Qing Yang, a neonatologist at Wake Forest University, is a co-author of a case series in the Journal of Perinatology about three premature infants who took SimplyThick, developed NEC and were treated. The paper speculates that NEC was "most likely caused by the stimulation of the immature gut by xanthan gum."

Dr. Yang said she only belatedly realized "there's a lack of data" on xanthan gum's use in preemies. "The lesson I learned is not to be totally dependent on the speech pathologist."

Julie Mueller's daughter Addison was born full-term and given SimplyThick after a swallow test showed she was at risk of choking. It was recommended by a speech pathologist at the hospital.

Less than a month later, Addison was dead with multiple holes in her small intestine. "It was a nightmare," said Ms. Mueller, who has filed a lawsuit against SimplyThick. "I was astounded how a hospital and manufacturer was gearing this toward newborns when they never had to prove it would be safe for them. Basically we just did a research trial for the manufacturer."


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