Coconut Oil for Trisomy Kids - Increased Babbling and Concentration?! You bet!

Updated 8/18/13 to add info regarding coconut intolerance/allergies.

At four years old, the only thing Rebekah verbalized was the same "ahhhhhh, ahhhhhh" noise she has made since she was little. We have spent a lot of time trying to get her to make different sounds and move her mouth in different ways. We do lots of oral stimulation and she loves to watch our mouths when we talk and will even touch our lips. But I had lost hope that she would say anything more than "ahhhh" because years of effort have not produced any different sounds. And we do work with her in this area daily!

So on my Trisomy 18 Mommies Facebook Group (which is for all rare trisomy parents, not just T18), a T13 mom was discussing her daughter's care and mentioned that she gives her 3-4 half teaspoons of coconut oil per day and she said "mama" after several weeks of coconut oil. She went on to say that the verbalization became more frequent and meaningful after adding in cranial sacral therapy. We already do periodic cranial sacral therapy for Rebekah (which I LOVE and highly recommend!! It helped early on tremendously!), so I was very interested in the coconut oil.

I researched it online and found some very interesting links. Most are related to the use of coconut oil for Alzheimer's patients. No, Rebekah doesn't have Alzheimer's. But... the premise is that Alzheimer patients have brains that have problems getting "fuel" and the brain degenerates. Dr. Mary Newport looked into providing her husband, suffering from Alzheimer's disease, an MCT fuel that would bring about a mild state of ketosis and allow the brain to process the "fuel" and function better. If you read her work, you'll get into a whole bunch of scientific information about MCT fat (medium-chain triglycerides) and ketones which I won't get into. But... if you read enough of it and know enough kids in the trisomy community, many kids with severe epilepsy have benefited from a Ketogenic diet which has to do with ketosis, MCT fats, and changes in brain function as a result. So this is all enough "evidence" for me to give it a try! There isn't really anyway I can harm my daughter by trying coconut oil, other than maybe adding a few pounds. And coconut oil has been used for centuries because of its medicinal value. :-)

• Dr. Mary Newport's initial story about using coconut oil on her husband who has Alzheimer's disease.
• Update on the Newports 5 years after using coconut oil.
• Mary's website -  Scientific references, articles, testimonials, and more. Per the website, studies are beginning on people with mild cognitive impairment and also on the use of ketones as alternative fuel for other conditions such as cancer, ALS, wound healing, oxygen toxicity, and epilepsy. Exciting stuff!
• coconutoil.com - research and news on the health benefits of coconut oil. Includes references to the use of coconut oil and ketogenic diets for autism. (http://coconutoil.com/tag/autism/)
• Coconut Oil, Ketones, and Alzheimer's - Mary's blog

Now I cannot provide any links to using coconut oil for speech. There are several supplements out there that are supposed to be good for speech development including Fish Oil and a supplement called Speak. But we had issues trying fish oil with Rebekah. She gets a suggested daily amount, but doesn't seem to tolerate the larger quantity prescribed for "speech" and cognitive improvement. What I can offer is anecdotal/parent experiential info. About a month after taking 1 tsp of coconut oil per day, Rebekah started verbalizing more sounds. In the same week, she began saying "dadadadada", "gagagagaga", "bababababa", and "mamamama". She is also experimenting more with sound influctions and her concentration/trainable time has increased a lot. She is more alert, and more interactive. Other people have recognized the change over a short period of time. Coincidence? Maybe. But other trisomy parents are reporting similar experiences. While not scientific, parent experiential data goes a long way to creating the bases necessary to encourage research on a given topic. So far, I haven't heard of anyone complaining of side effects or negative reactions to adding coconut oil.

What We Use: 

We use organic virgin coconut oil. Some are labeled extra virgin. There really isn't a difference (like there is with olive oil). Virgin coconut oil can be cold (expeller) pressed, or wet-milled. Both use no heat and no chemicals. Do not buy the cheap coconut oil you find in grocery stores that is "refined". The refining process uses harsh chemical process to deoderize the oil so that it doesn't taste and smell like coconuts. This process also reduces antioxidants per serving. Wet-milled would probably be the best type to purchase, but it can pretty much only be found online. I purchase cold-pressed oil locally and I am currently using the Vitamin Shoppe's organic virgin olive oil. I have heard that you can purchase a good size container, reasonably priced, of Nutiva at Costco and Sam's Club. It is also an organic, virgin, cold-pressed coconut oil. I am not a brand-snob. I am sure there are many other good brands out there as long as it is organic, virgin, and unrefined.

Dosage:

An adult dose referred to in the articles for Alzheimer's patients is 40 ml or 2.7 T. Rebekah weighed 26 pounds when we started. I used a conservative dose of 1 tsp per day. I am currently working up to 2 tsp per day, but we do not do this consistently as she has gained three pounds over the course of 3 months and the extra calories are probably the culprit. Ironically, coconut oil is supposed to help with weight loss (and memory!), so I may be trying to incorporate it into my own diet!

Our Process of Delivery for G-tube Button:

Rebekah has a mini-one button g-tube and we can use monoject 6ml syringes right into her button. I administer 1 t of coconut oil via Rebekah's gtube with a water bolus in the evening. I do it separate from medicines and feed. The second dose is given in the morning, also separate from feeds and meds. I plan on eventually blenderizing Rebekah's food and will probably incorporate some of the fat into her feeding at that time when I get the okay from a nutritionist.

Coconut oil is solid at room temperature! It becomes a liquid at about 75+ degrees. In order to get the oil into syringes, I scoop it into a small glass and place it inside a bowel of hot water (not getting the water into the glass with oil). After a few minutes, I stir and it is usually liquified. Use hotter water if it isn't melting. Do not microwave or use boiling water as coconut oil doesn't withstand high heat and you do not want to break the oil down and reduce the antioxidant benefits. I draw it up into syringes for the week in 5 ml (1 t) amounts. Each time I want to administer the oil to Rebekah, I simply set the syringe in a cup of hot water for a few minutes, put it into the g-tube, then flush with at least 30 cc (1 oz) of water. I flush with a plunger on the syringe to make sure there is enough pressure to wash the oil down.
It is very important to liquefy the oil and flush well or YOU WILL CLOG THE G-TUBE!! If things slow down, try giving an ounce or two of pepsi or coke to break down the clog. Properly preparing the oil and flushing immediately after delivery should prevent buildup in the gtube button mechanism.

Hopefully this information is useful to some families. If so, I would be grateful if you would please post a comment, share my blog, and "like" Rebekah's Facebook page.  If you pursue using coconut oil for your trisomy child, please join us on the T18 Mommies Facebook group and tell us your experiences! We have several medical professionals on our group and would love to eventually have a medical paper written on the use of coconut oil in our kids. Also, if we continue to see positive responses, Hope for Trisomy will eventually add all of this information into a H.O.P.E. (Helping Others through Personal Experiences) Database that will be designed to encourage medical research based on parent experiential data.

Please remember, this blog is not meant as medical advice. If you choose to make any dietary changes to your child's diet as a result of this information, PLEASE discuss all changes with a doctor/nutritionist first! Adding supplements (such as Speak) when supplements are already being given can result in vitamin toxicity. Adding fat calories and certain supplements can disrupt absorption of certain vitamins and minerals. Adding fat calories can disrupt the balance of a nutritiously balanced plan (1 tsp of fat = 40 calories and for a child on a small volume diet, an extra 40 calories of fat is significant). 

It is important to know and recognize the signs of a coconut allergy. Coconuts are considered a "nut", so anyone with a tree nut allergy should procede with caution. Less severe is a coconut intolerance. Click here for signs and symptoms of intolerance

Other useful links on brain-development for your intellectually disabled child:

• 20 Brain Boosters for Better Cognitive Health - Fish Oil (Omega 3's), Lecithin, ALC, ALA, Ginkgo Biloba, Magnesium L-Threonate, Vitamin E, etc.
• Single Dose of Coconut Oil Boosts Brain Function - Specifies an adult dose and summarizes a medical study of 20 patients.  
• What to Do About Your Brain-Injured Child
• Moderate to Profound Intellectual Disabilities – Resources List
• National Association for Child Development (Bob Doman)
• The Institutes for the Achievement of Human Potential (Glenn Doman)
• Kids Beyond Limits: The Anat Baniel Method for Awakening the Brain and Transforming the Life of Your Child With Special Needs

8/18/13 Update:

In addition to coconut oil, coconut milk can be added to the diet. This is more palatable for oral eaters. But it takes a lot more coconut milk to get enough of the coconut oil fats for the desired serving. I have no recommendation on quantity, check with your nutritionist.

Some people have coconut allergies and intolerances, especially if there is a known tree nut allergy. If digestive issues get worse, stools contain white areas or become colorless (due to going through the digestive tract too fast and lack of bile/absorption issues), etc., then stop using the coconut oil/milk immediately. Spreading out the oil or milk across multiple servings might help if it increases motility a little too much. Also, it looks like some celiacs are allergic to coconuts too. Here is a great summary on coconut intolerance. http://www.hemocode.com/wiki/Coconut-intolerance

An Unexpected Casting Visit

We made an unexpected trip to Shriner's hospital today. Yesterday we noticed Rebekah's casts were so loose in the thighs that we could fit our entire hand into into and down to her knee! Her left foot had actually shifted quite a bit and the right foot was in danger of the same thing. 

The doctor decided to remove the old casts and recast her in the long leg casts for the last 2 1/2 weeks until she is scheduled for the pin removal. Rebekah managed like a champ and wasn't in any pain or discomfort. Her new casts should stay secure the last few weeks. Best thing - her feet looked really good! Although we have 2 1/2 more weeks in long casts then a few weeks in short casts, Rebekah should be able to wear shoes and have then stay on her feet! Can't wait until the casts are completely off and we can bathe her poor dry, scalely legs and wear some cute shoes!

Pre-surgery feet. I don't have a very good photo of her rocker bottom heels, but you can see them to some extent here. Shoes always would fall off her feet and the right one turns off to the right also. 

Getting the casts cut off.

You can see how far back Rebekah's toes are. The cast was beginning to slide off. 

Here are the 2 pins still in Rebekah's right foot. You can see the much better alignment of the heel.

Another view from the outside of the right foot.

Left foot looks great!

New casts for 2 1/2 weeks, then we take them off again to remove the pins. 

 

 

Team Budd Zoo

Please consider supporting Team Budd Zoo in our efforts to raise money for SOFT (Support Organization for Trisomy 18, 13 and Related Disorders) through their Stroll for Hope event. 

We will be "strolling" in the 3rd Annual Stroll for Hope on Thu, July 18th at this year's SOFT conference in Providence, RI.  Funds raised go towards helping SOFT provide its resources and services to many families.  You can view some of those resources on their website: http://www.trisomy.org. SOFT is a 501(c)(3) that has been supporting the trisomy community since 1980! No donation is too small!

==> DONATE HERE <==  

Donating through the firstgiving.com website is simple, fast and totally secure. It is also the most efficient way to support my fundraising efforts.

Many thanks for your support -- and don't forget to forward this to anyone who you think might want to donate too!

THANK YOU from Team Budd Zoo!

Team Budd Zoo - 2011 Stroll for Hope - Chicago, IL

Team Budd Zoo - 2012 Stroll for Hope - St. Louis, IL

Some of the 2012 trisomy stroll participants

Foot Surgery - Finally!

Some of you may recall that we have been trying to pursue foot surgery for Rebekah for some time. In fact, we were all set to travel back and forth to St. Louis last fall to have her feet casted and corrected for rocker bottom feet/vertical talus. However. Rebekah got a bowel obstruction last September and spent 2 weeks in the hospital. Although it resolved itself, we have been leery to travel so far for orthopedic services since she is likely to have another repeat bowel obstruction at some point.

Rebekah's right foot bends outwards to the right. The toe bones all bend to the right. Her toes on both feet look small because they are all webbed from the first joint. Her feet are more than "flat", they are actually convex from an anomaly related to Trisomy 18 called Rocker Bottom feet. 

Another look at her feet from the bottom. you can see the outward curve of the right foot and the bony protrusion on the inside of that right foot. This is due to her talus bone in the foot appearing vertical and diagonal.

Given Rebekah's genetic diagnosis, we have met many obstacles (doctors and support from others) in seeking to fix Rebekah's feet. In fact, there are many people who believe we would just be subjecting our child to unnecessary and senseless surgery and "pain and suffering" because we cannot "fix" trisomy and "everyone knows" she cannot (and will not ever) walk.

You can see the prominence of the heel bone being pulled up. This is the sign of "rocker bottom feet" and results in her heel sticking way out. Shoes do not fit this girl! You can also see the convex action of the foot where it should be concave into an arch. This foot defect causes her weight to be distributed on the inside front right of her foot during weight bearing - a balancing act at best to maintain a standing position, let alone walk.

A shot of Rebekah's bones from the top of her foot. you can see how her right toe bones all curve outwards to the right. This anomaly will NOT be corrected with her surgery as this is bone work. If and when we address this, Rebekah will be much older.

Well, Rebekah didn't read those textbooks and we claim victory over the effects of trisomy in her life. We believe she WILL walk one day, but her feet need to be fixed in order to help her reach this goal. And, while surgery of this nature would be "elective" in that it is not necessary for her health, her foot anomalies create feet that cannot be properly balanced on for walking. Anyone WITHOUT TRISOMY would not be able to walk independently on them. So we choose HOPE and FAITH and will give her every chance to overcome the effects of Trisomy on her body.

Rebekah bright and early at Shriner's waiting for check in.

On Tuesday, May 14, at 6am, Rebekah checked into the Shriner's Children's Hospital in Greenville, SC for surgery on both of her feet. Rebekah was born with "rocker bottom" feet and has some bone anomalies caused by tight tendons and mis-angled bone. This is how the procedure was described: The surgery consists of releasing the heel cord tendon to drop the back of the foot bone down, allowing the foot to be more flat. He right foot will also have the outside tendon released so that it will not pull the foot outwards. A pin will be placed through soft tissue to try to hold some of the mis-angled bones into better alignment. Both feet will be casted up to her thigh for 6 weeks. Then the casts will be removed, the pin taken out, and her foot molded for AFOs (ankle-foot orthodics). Then lower leg casts will be put on for another 3-4 weeks while the AFOs are being made. This is all soft tissue work and no bone work will be done (directly).

Once the surgery began, the doctor discovered that Rebekah's calf muscles on both legs actually extended all the way down to her feet as well, and they were released in addition to the Achilles tendon. On her right foot, two tendons on the outside had to be released (instead of just one) and two pins were placed into her foot (versus one) - one from the back and one from the front - through soft tissue to help hold the foot in proper position.  Her bones in the front of her foot all curve to the right and, unfortunately, none of this soft tissue surgery will correct that. But hopefully the more neutral position of her foot will correct the growth pattern.
 
The surgery was successful. Rebekah spent the night in the hospital and it took a few days to get her back to eating. I have to admit, watching her those few days I was really concerned that maybe we had made the wrong decision. She vomited and would not tolerate anything until we gave up on narcotic pain meds and went with just motrin or tylenol. As soon as we dropped the narcotics, she perked up and started acting like her old self!

Rebekah's pain response causes her whole body to go into a flushing mode. Look at how red her cheeks and arm is.  It was also on her chest and upper legs. 

A closer look at her vasodilation reaction to pain.

Her white casts were overwrapped post-surgery in the color of our choosing. I went with the bright tie-dye/camo colors to match the bright colors that were in all the stores for girl's clothes. :-)  Sitting on Rebekah's lap is a new Build-a-Bear (well, dog). Shriner's has a room with all kinds of build-a-bears and each child after a surgery is allowed to pick out a bear and outfit/accessories. Ours has a princess crown and wand and silver shoes. She has a princess t-shirt on. There weren't any really cute princess dressed that didn't clash with the pink on the poodle.

The casts add a LOT of weight and we are supposed to maintain her feet in an elevated position where the heels do not touch anything in order to minimize pressure sores. Well, let's just say after about a week in the casts, Rebekah got tired of lying in the same position and unable to move. So three weeks into the 6 week full leg cast, she is easily lifting those heavy casts and flinging them all around. She has figured out how to finagle her body back and forth and move across the floor. She is delighting in brutal leg whacks against her family's extremities, and all of us have at least one black and blue mark to show for it!  This girl has to have abs of steel by now!

Please continue to pray with us that her surgery will make a difference on her balance and potential for walking, for the overall success of the surgery once the casts all come off, and for what the future holds for our baby girl.

Rebekah rockin' her multi-colored tie dye/camo casts as she leans into Daddy for some snuggling time.

Keep on MARCHing into Trisomy Awareness...

Lots of awareness brought to you through days 6& 7!

DAY 6 SHARE:

Trisomy Awareness - Day 6 
Trisomy isn't the only condition discriminated against. Today people are united worldwide to help raise awareness about the negative impact of labels. While we may deal "incompatible with life", many people labeled with the "r" word are facing a similar discrimination in their community, in the workplace, at school, etc. So commit today to not only raise awareness about TRISOMY, but commit to SPREAD THE WORD TO END THE WORD.
Language affects attitudes. Attitudes impact actions.Special Olympics and Best Buddies International encourage people all over the world to pledge now to use respectful language at www.R-word.org and build communities of respect and inclusion for all people.
Language affects attitudes. Attitudes impact actions. Special Olympics and Best Buddies International encourage people all over the world to pledge now to use respectful language at www.R-word.org and build communities of respect and inclusion for all people.

From Spread the Word to End the Word:

On Wednesday, March 6, people around the world will unite their communities to Spread the Word to End the Word®, as supporters participate in the 5th annual ‘Spread the Word to End the Word’ awareness day, aimed at ending the hurtful use of the R-word (“retard(ed)”) negatively impacting people with intellectual and developmental disabilities (IDD).

Trisomy 6: Meet William who has Partial Trisomy 6p. Follow the link for the story!

DAY 7 SHARE: 

On our 7th day of MARCHING into TRISOMY AWARENESS MONTH, we are going to share a little more about chromosomes. Our chromosomes carry our genes, the basic units of heredity. Our genes are made up of DNA. There are approximately 30,000 genes that influence our growth and development. Each gene occupies a specific location on a chromosome. With the exception of the X and Y chromosomes, there are two copies of each chromosome and therefore two copies of each gene. When a mistake or an alteration occurs in one or more of our genes our body does not develop properly, and this can lead to a genetic disease. Share because you Care. ♥

Trisomy 7:  Meet Rachel who is 27 years old with Partial Trisomy 7. Follow the link for the story!

Getting Down With Chromosomes

Day 4 Share: 

On our 4th day of MARCHING into TRISOMY AWARENESS MONTH, we are going to share an interesting FACT about chromosomes. We all have learned that Trisomy is a chromosome disorder, but does everyone know what a chromosome is? A chromosome is a threadlike strand of DNA in the cell nucleus that carries the genes in a linear order. Each chromosome carries genes that contain the hereditary material that controls the growth and characteristics of the body. There are 46 chromosomes in each human cell organized in 23 pairs, of which 22 pairs are similar in appearance but differ at the molecular level. Here is the interesting fact; the chromosomes are designated by a number beginning with chromosome 1 being the longest, followed by chromosome 2, etc. So as the numbers get higher, the chromosome gets smaller as you can see in the sample picture. Share because you Care. ♥

Day 5 Share: 

On our 5th day of MARCHING into TRISOMY AWARENESS MONTH, we are going to share a little more about chromosomes. Did you know that a chromosome has ARMS? Well...it does. All human chromosomes have 2 arms -- a short arm and a long arm -- that are separated from each other only by the centromere, the point at which the chromosome is attached to the spindle during cell division. The short arm is termed the "p arm" while the long arm of the chromosome is termed the "q arm." The symbol "p" was chosen to designate the short arm because "p" stands for "petit", "small" in French. The letter "q" was selected to signify the long arm merely because "q" is the next letter in the alphabet. Share because you Care. ♥

Trisomy Awareness - SHARE because you CARE!

The following tidbits of information for Trisomy Awareness month are brought to you by a passionate trisomy mom and friend, Alisha, who is part of the Hope for Trisomy organization. Visit our Facebook page to keep up with a month of facts, fun and inspiration!

This is Alisha with her full trisomy 18 son, Lane, who is 4 years old.

3/1/13: Today is the beginning of a very special month for us! Why you ask? It's the 3rd month of the year and so we celebrate MARCH as TRISOMY AWARENESS MONTH...with "tri" defined as, in intervals of 3. We will be bringing awareness to TRISOMY because awareness is the first step to education, and we will be educating by starting with the basics. When a child is born with a 3rd copy of a chromosome, then they have been born with a TRISOMY syndrome. When we are born, we all receive 23 chromosomes from each of our parents totaling 46 chromosomes. Your father's DNA decides what sex you will be on the 23rd chromosome he has given you. A TRISOMY syndrome can be made on any of the 23 chromosomes present in the body, which will then make the genetic makeup total 47 chromosomes. ♥  (I posted Day 1 on my last post, but I didn't want it to get lost. ;-)

3/2/13: On our 2nd day of MARCHING into TRISOMY AWARENESS MONTH, we are going to learn who is more likely to become pregnant with a child diagnosed with Trisomy. Can you guess? Well...the answer is, any female who can become pregnant! Trisomy DOES NOT discriminate! Trisomy doesn't care what age you are (although there is a higher risk in women older than 40), what ethnic group, what demographic location, or how much money you make! Trisomy can happen to you, a family member, or a friend! Please help us in bringing awareness to the WORLD. SHARE because you CARE. ♥

3/3/13: On our 3rd day of MARCHING into TRISOMY AWARENESS MONTH, we are going to share the 3 different types of TRISOMY. The 3 different types being FULL, MOSAIC, and PARTIAL. The most common type is FULL Trisomy, and this means the extra chromosome occurs in every cell of the body. This type of Trisomy is not hereditary. MOSAIC Trisomy occurs when the extra chromosome is present in some (but not all) of the cells of the body. Like Full Trisomy, Mosaic Trisomy is not inherited and is a random occurrence that takes place during cell division. PARTIAL Trisomy occurs when only "part" of an extra chromosome is present. Some Partial Trisomy syndromes may be caused by hereditary factors. It is important to note...while there are different types of Trisomy, this does not mean one is better for a child than another. With each type, there is a wide spectrum of severity. It is hard to say how the extra chromosome will impact an individual child from the genetic diagnosis alone. Share because you Care. ♥

Check out these Inspirational Trisomy Kids Stories brought to you by Hope for Trisomy.

Trisomy Awareness Shares

Let's make this month a successful one for raising Trisomy Awareness! Here are some photos to share and some information to pass along about trisomy.  Sharing a tidbit of information about trisomy from Hope for Trisomy's facebook page. Visit daily this month for more information about trisomy!

Today is the beginning of a very special month for us! Why you ask? It's the 3rd month of the year and so we celebrate MARCH as TRISOMY AWARENESS MONTH...with "tri" defined as, in intervals of 3. We will be bringing awareness to TRISOMY because awareness is the first step to education, and we will be educating by starting with the basics. When a child is born with a 3rd copy of a chromosome, then they have been born with a TRISOMY syndrome. When we are born, we all receive 23 chromosomes from each of our parents totaling 46 chromosomes. Your father's DNA decides what sex you will be on the 23rd chromosome he has given you. A TRISOMY syndrome can be made on any of the 23 chromosomes present in the body, which will then make the genetic makeup total 47 chromosomes. ♥

This is a facebook-sized banner made by a friend of mine who lost her T18 daughter. The footprints are her much-loved and much-missed Ellie Cushman. If you cannot resize this for facebook, pull the photo off of Rebekah's facebook banner: http://www.facebook.com/rebekah.budd

Boy version of the banner.

Facebook Trisomy Awareness profile pic for girls

Facebook Trisomy Awareness profile pic for boys

Please feel free to share Rebekah's photo, story, and information below in support of Trisomy Awareness month!
March is Trisomy Awareness Month. Trisomy is a genetic condition in which there is an extra chromosome in every cell. Down syndrome is trisomy 21. Many rare trisomies are deemed "incompatible" such as Rebekah's Trisomy 18. However, she is showing that she is, indeed, compatible with life. Many trisomy children are aborted or denied life-saving medical interventions. Even with Down Syndrome the abortion rate is >90%. We want people to know that these children are loved and deserve a chance, because every life has value!

Rebekah's Blog: http://buddzoo.blogspot.com/
Rebekah's Facebook Page: http://www.facebook.com/rebekah.budd
Hope for Trisomy: http://www.hopefortrisomy.org/
HFT on Facebook: https://www.facebook.com/HopeForTrisomy13and18

Do you have a trisomy story to share? Post it to Hope for Trisomy and we will add it to our facebook Tri-kids and blog!
Rebekah's Blog: http://buddzoo.blogspot.com/Rebekah's Facebook Page: http://www.facebook.com/rebekah.buddHope for Trisomy: http://www.hopefortrisomy.org/HFT on Facebook: https://www.facebook.com/HopeForTrisomy13and18
Do you have a trisomy story to share? Post it to Hope for Trisomy and we will add it to our facebook Tri-kids and blog!

Feel free to replace you facebook photo with this one in honor of Trisomy Awareness Month!

Let the world know that what the medical community calls "incompatible" and "futile" is met with a different definition by those who love and care for their trisomy miracles.  Please feel free to share!  A larger version is available at Hope for Trisomy's facebook page photos, along with word art for Conventional Thinking and Balanced Approach.

The following 4 posters were designed and offered freely by Eva's Gifts. You can visit her page to order them already made or to download a higher res copy. There is one for Joy, Life, Love and Hope - all featuring different trisomy children and one word their family chose to describe each one. Truly a beautiful project! If you visit her page, there is also a link to a picbadge awareness ribbon and some other banners.

TRY-SO-MY LIFE... HAS MEANING

Trisomy 18 is a scary thing. Statistics sadly state that 90+% of the babies die before birth. That doesn't even include all of the babies that are aborted, which is probably already >90% of those that know about the trisomy 18 before birth.

There is a Hebrew word, Chai (חי). The numerological value to Hebrew letters, the letters Het (ח) and Yud (י) add up to the number 18. The Hebrew word and symbol Chai (חי) mean "life". So 18 = LIFE.

Trisomy 18...

TRI-SO-MY 18...

TRY SO MY LIFE... 

♥ TRY SO MY LIFE... HAS MEANING ♥

God bless all the parents who have given their trisomy 18 child's life meaning. It doesn't need to be counted in minutes, hours, days, or years. Each one is uniquely designed by God for a specific purpose.

Thank you to my new trisomy 18 friend, Tanya Meyer-Herrera, for sharing such a beautiful thought with me today. ♥ Please pray for her unborn trisomy 18 baby girl.

MiraLAX Users - Caveat Emptor!

Users of MiraLAX and other generic polyethylene glycol products need to be aware of potential harmful side effects from using this constipation medication!  Generics for MiraLAX include brands such as Clearlax, GlycoLax, Healthylax, Purelax, Dulcolax, and many other products containing polyethylene glycol 3350 (PEG) as an active ingredient.

Many people, especially special needs children, suffer with chronic constipation, reflux, and slow motility issues. Most doctor-prescribed "remedies" are prescription or over-the-counter drugs designed to mask the symptoms and address the problem with a man-made chemical solution.  In our own household, we are guilty of using these remedies time and time again. In fact, for Rebekah, we use a daily regiment of reflux and constipation medications. One popular drug, Nexium, has received a lot of heat for bone depletion issues and I mention this topic in this blog post about the dangers of Nexium and other PPI-type medications.

I was recently made aware of the following link which explains why MiraLAX (and any laxative using Polyethylene Glycol 3350 (PEG for short) as their active ingredient) is not good for you.
http://www.gutsense.org/gutsense/the-role-of-miralax-laxative-in-autism-dementia-alzheimer.html
It is comforting to know that the main ingredient of these laxatives is a chain of ethylene glycol molecules - commonly used in brake fluid and antifreeze. There is evidence showing extremely concerning potential side effects. I try not to be an alarmist, I know there are many websites out there that tell similar stories about many products we use (like corn syrups, artificial sweetners, etc). But it becomes increasingly alarming to think that all of our advancements in chemistry have just led us to create unnatural products that are harming us more than helping.

According to this particular miralax claim, there is supportive evidence that shows that polyethylene glycol (PEG) is associated with neurotoxicity, nephrotoxicity, urticaria, and esophageal perforations. As an osmotic laxative, it blocks absorption of nutrients in the small intestine and leads to dysbiosis (lack of intestinal bacteria). The FDA's Adverse Event Reporting System (AERS) has included reports of serious kidney, rinary, bowel, blood, skin, and neuropsychiatric symptoms.  What I appreciate most (despite this not being a "medical" paper) is the appropriate links to actual medical journal papers that support the claims.

I did my own quick search and here are just a few of the things I found that support the article:

• WebMD says that common side effects of use are nausea, cramping, and gas (many of the symptoms we are trying to fix in the first place!), and that caution should be used if you have certain stomach & intestinal problems / obstructions (isn't constipation a form of obstruction and chronic constipation a stomach/intestinal issue?) or irritable bowel syndrome.
• The New York Times posted an article last year that states that there is no warning about use of MiraLAX with children despite lack of studies. Even more troublesome is that pediatricians are prescribing MiraLAX for long-term use despite the warning labels not to use it more than 7 days (my generic brand says 14 days).
• Even ehow.com states that long term use of MiraLAX can lead to diarrhea, dehydration, and mineral imbalance. (Given how many of our kids are on this as a long term regiment, how many of them are even having their blood checked for mineral imbalances?)

I don't know what to think anymore when you come across these websites that scare me into not using things. But it works! I have been thinking for a long time now how I can better help Rebekah and get her off of all of these unnatural medications for motility and bowel issues. We will be exploring blenderized diets and natural supplements, but I would be kidding myself if I said we are switching to all natural products and food. I can't put that kind of pressure on myself - I don't have the time or resources to do it all the "right" way. But I do know that educating myself helps me make better decisions and better choices for all of our family members, not just Rebekah.

So if you have something easy and affordable that works well, PLEASE share it with me! You may be able to help many other families besides mine.

Everyone Poops

When you have four boys, rarely does a day (or a dinner) conversation pass without someone bringing up "poop". It inevitably is a part of our everyday conversation along with the other fun boy words like fart, belch, butt-head, smelly poopy-head, and the list goes on...

If it isn't the boys bringing it up, it's Rebekah's poopy diapers and poop explosions that seem to occupy my time. We just need to face it, POOP is a part of our everyday lives! If you don't believe me, then you obviously haven't read the book Everyone Poops by Taro Gomi.

Well, Tuesday was no different. Somehow, I expected it to be a grand day. Rebekah was getting her spica cast off! So on the way to the orthopedist's office, what happens? One last poop explosion up and out the back of the cast. That made for a lovely mess while they tried to cut the cast off.

To make things even better, I had orders to soak her in the tub until she was a prune to help her leg soreness. She wouldn't stay still in her bath chair and kept sliding down, so that wasn't working. I couldn't put her in a bath seat for babies because she had been casted at a 45 degree angle for 6 weeks and wanted nothing to do with sitting up fully. So I finally relented, put on a bathing suit, and sat in the tub with her. She was getting really irritable and started coughing. Well, with the coughing inevitably came... poop in the tub! I managed to hand her off to the nurse and started to drain/clean the tub so I could take a shower and clean myself off.

But there it was, at the bottom of the tub, as if mocking me... or perhaps just reminding me that I cannot escape my life doomed to poop at every turn. But living a sitcom kind-of-life, I didn't let a little poop bring me down. It can at least be washed off! So I did the only thing that I could do in a situation like this. I laughed and grabbed my phone and took a picture.  As the water continued to drain, another blob of poop formed a sad face, as if saddened, because it did not get the best of me!

"But there it was, at the bottom of the tub, as if mocking me...
or perhaps just reminding me that I cannot escape my life
doomed to poop at every turn."

"As the water continued to drain,
another blob of poop formed a sad face, as if saddened,
because it did not get the best of me!"

I promise that I did not "arrange" the poop in some sort of perverted manner. I just think God sometimes has a sense of humor.

Birdie, birdie in the sky,

Why'd you turdie in my eye?

I don't worry, I don't cry,

I'm just glad that cows don't fly!

And if you want to read more about poop, here is a link to Interesting Facts About Poop. My favorites from the list -

• The average human poops 1/2 pound per day, while an elephant poops an average of 80 pounds of poop per day!
• Poop can be classified into SEVEN groups. 

1. Separate hard lumps
2. Sausage-shaped but lumpy
3. Sausage-shaped with cracks
4. Sausage-shaped but smooth
5. Blobs with clear cut edges
6. Fluffy pieces, very mushy
7. Watery

Disclaimer: No poop was harmed in the creation of this blog post.

My Little Warrior Princess

The Warrior Princess Foundation - The Warrior Princess Foundation was founded by Michael and Chrissy Whitten after their precious daughter, Lilian Grace, earned her wings Thursday, August 5, 2010. She was born with T18, Edward’s Syndrome, on Sunday, April 25, 2010, and fought a daily battle for 103 days. Her parents realized the need and desire to help other families going through this similar journey due to the large costs and grueling daily battles this syndrome creates on a daily basis.  They wanted to create a way to help families, and so they began an annual fundraiser to help in that effort.

The foundation held it's second annual Trail Run fundraiser this past April 2012. They choose trisomy 18/13 children to recognize during the race. Rebekah was one of the these children honored both the first year of the run (2011), and the second year (2012).  We feel very blessed to receive an official Warrior Princess Medal which arrived for Christmas time.  Many thanks to the Whittens for honoring our trisomy children and for helping families in need! 

This is the medal that Rebekah received. The message reads,
"A small token/gift for your grace  & fighting spirit
through your true Trisomy Race. This medal is from the
2nd  Annual Warrior Princess Trail Run 10.3 miles, 10.3K &
Fun Run/Walk 1.03 miles races on April 25, 2012.
Love from Michael, Chrissy, Piper & Lilian (Angel)

Rebekah is totally thrilled at the honor of receiving an official Warrior Princess medal!

Navigate the slides to see more of Rebekah's funny faces. :-)