Thursday, January 26, 2012

Vestibular update...

On Monday we saw the new occupational therapist, Aimee, from Pillar Child Development. We talked about the crazy week prior with all the behavior changes, etc. since N saw her for the first time the week prior. She wanted us to come back this week for a second visit, so we went this am. Noah had to skip school in order to go to Pillar for therapy, but it is well worth it!

Today N was really into crawling around; in tubes, over pillows, around pillars, anything that was giving him that cross pattern movement he was all about!

When it came to the vestibular movement of the swings, he really wasn't very interested. A week ago Monday, at his first appointment with Aimee, there was a lot of swinging, on a board, on a tube, in a hammock, etc. All of that swinging movement awoke a sensation in his little body that I don't think he understood how to handle. This past week he has been quite defiant!
Where typically our little man is very compliant, easy going and wanting to please, the past ten days have been shocking us with the expression of defiance, strong will and when frustrated, throwing and even the attempts of hitting his therapists twice.

WHAT is GOING ON!?!?!? Being the expert that I am :) I have my own opinions... one thing that has changed is that we have increased the Ginko Biloba that we are giving Noah. Therefore, if it is working as we are expecting it too, N has "woken up" and is now stating his opinion and/or preferences to certain activities. Also, piggy-backing on that expert theory :0... we have disrupted and awakened something in N from the intensive occupational therapy movements with Aimee Pillar. Soooo... it is expected that he is acting out until he feels comfortable again within his own skin, where he feels balanced and in control.

Today was a better day, both in speech and with our tutor/nanny, Amy. He was much more compliant, eager to work and stayed focused a little longer than the past week+.

We have an appointment with a developmental/behavioral pediatrician on Monday afternoon. His name is Dr. Daniel Kessler. He has a wonderful reputation and will hopefully have a great energy and relationship with Noah.

Updates to come soon... have a fabulous Friday!

Monday, January 23, 2012

2012 - The Year of Discovery...

Toward the end of last year, there were a few things that I knew I needed to do for Noah and his "best of life" program.

I realized that I needed to find a Developmental Pediatrician to add to our team of experts. Also, I noticed the advancement of visual stemming behavior with Noah, so a sensory occupational therapist was a must as well.

Lately I have been slightly tweaking his current vitamin/supplement regimen, as well as looking into adding some additional nutrients and/or medication to his daily routine.

So, last week was our first appointment with his new occupational therapist, Aimee Pillar. She is the founder of Pillar Child Development and is who we had our evaluation with in mid December. Aimee specializes in sensory integration therapy.
www.pillarchilddevelopment.com
Last Monday, January 16, was Noah's first appointment with her. While he was there, they did a lot of swinging in different swings, a lot of climbing and some fine motor. The swinging really opened up his vestibular system and made for quite the crazy week.

First of all, on Monday evening during dinner, Noah said "potty" as clear as could be! It was quite amazing and I do attribute that to the O/T from earlier that day.
Later on in the week, on Thursday night, Noah was a complete terror when it came to bedtime. He didn't want to go to sleep (although he was exhausted) and he tore his nightlight out of the socket, breaking it. He also threw his table lamp on his night stand, breaking that as well.
Friday at school, he was pretty much not focusing on his work and then at speech therapy, he refused to cooperate, throwing all of his work and not listening to his therapist.

So, today at his O/T appointment, we cut back on the swinging and increased his crawling around and motor movement. Noah is also going to see Aimee on Thursday am this week too, so we will see how his behavior and sensory is responding.

Another thing that we started today for the first time through Aimee, is a method of sensory awakening called Wilbarger Protocol. Basically this is a brushing on the skin with a soft surgical brush followed up with joint compressions. The benefit of this input is to help the body to organize and decrease any tactile sensitivity.

I really like Aimee and appreciate her communication and willing to do whatever it takes to help our little man be his very best.

Below is some video from today's session - I plan to update this frequently with video to monitor his progress.

video

On Saturday I attended a seminar down in Tucson, AZ that was hosted by the Changing Minds Foundation.
This was very fascinating. The protocol consists of many of the nutrients that I am already giving to Noah, and as recently as November, I added in the Body Bio Oil as well as the PC Oil. I also increased the amount of Ginko Biloba that we are giving to Noah as well as giving this to him three times a day. Basically we are doing the complete protocol with Noah minus the drugs.
However, after attending the seminar a couple of days ago and listening to the biological facts, my mind is open to trying some medications to help my little man.

I learned quite a bit of information on Saturday. I learned the Why to the reason of our kiddos having a higher chance of developing Alzheimer as they get older. The gene that is the one founded at the onset of Alzheimer is located on the 21st chromosome. Therefore, since our little one's have this gene triplicated, it's no wonder they have the higher chance of developing this as they grow older!
Also, I learned the Why to the benefit of Ginko Biloba. Our little ones have too much GABA, which has a relaxing effect on the brain. I take GABA sublingually when I feel really stressed, and it does calm me down. Well, our guys have so much of this that it actually has them feel this over relaxed state all of the time! The Ginko has the ability to decrease the effect of the GABA, in essence, turning on the light in our little one's brain! Fascinating!!! For more information, visit their website at www.changingmindsfoundation.org

I have noticed since increasing the amount and distribution of Ginko to Noah he is now jabbering ALL THE TIME! Yes, it is driving me crazy, but I am hoping that this is the precursor to "talking" all the time :)

Today I made an appointment with a developmental and behavioral pediatrician in town named Dr Daniel Kessler. He used to be a part of a large developmental team at one of our local hospitals and is now in private practice. We were blessed to get in on a cancellation appointment this Thursday am... I will be sure to share our experience.

So, that is my update for today... I am going to continue to add information often as I need to track Noah's reactions to the changes that we are implementing. It might not be for a very fun read, but it will definitely be informative to me and our family :)

Blessings to ALL...

Raquel and Noah.

Saturday, January 14, 2012

"Tut-tut, it looks like rain."

How sweet to be a Cloud
Floating in the Blue!
Every little cloud
Always sings aloud.
"How sweet to be a Cloud
Floating in the Blue!"
It makes him very proud
To be a little cloud.


A couple of days after Christmas, one of our neighbors/friends stopped by the house and spoke with my husband Jacques.
She came by to share the fact that a friend of hers recently had a baby boy who was born with Down syndrome. She and Jacques spoke for quite a while and he told our friend to please share our information, that we would be more than happy to talk with the new parents and share our experience thus far.
Fast forward three weeks, to this evening... Today, this beautiful, Saturday afternoon, was one of complete laziness in the Barbey household! We all slept in, chores were moving along in a very s...l...o...w.... motion. I was the only one to shower today, and yet the hair dooo did the ah-natural drying thing... anyway, you get the picture, a lazy day at the Barbey household! So, come to the end of the afternoon, while I'm thinking of dinner and OH NO! There is not enough creamer for our coffee tomorrow!!!! MAYDAY! So difficult to start your day without creamer in your coffee, whats more, smiling and making small talk with our friends at church... Definitely need creamer!
More information than is needed nor cared about, the story continues on... when I return from the grocery store, Noah is wanting to help me bring the groceries in and then he see's his bike. Lets ride my bike "Moommm". Keep in mind, little guy is still in pajamas from last night, but heck, it's almost 6 pm, the neighbors will think I'm so on it that I've already given my little man a bath and he is dressed for bed for tonight!
So, off we go for the 20 minute stroll around our neighborhood block. 3/4 of the way around the block a black suv pulls up beside us. Turns out she is the mom of our neighbor friend who recently had the baby boy with Down syndrome. So she gets out to meet Noah and we begin to talk. First thing she does when she sees my little man is that she begins to cry. Uh-oh, I knew I should have given him a bath! :) No, I completely understood where she was coming from. Now since my little guy is so damn cute, I still haven't figured out if she was crying because he was so adorable or because he wasn't what she expected of her little man in the future... we'll leave that to the universe.
However, she and I had a wonderful conversation... Jacques came out to meet her as well... and Noah said "bye bye"to her.

This evening had me thinking though, a lot. After Noah went to bed, I decided that he should write a note to his new friend, Peter...

Dear Peter,

Hi! My name is Noah. Your mom and my mom met today for the first time. I found out that you and I have something special in common.

We were both born on very special days... You were born on the Holiest of all days, the Birth of our Lord Jesus Christ! I was born on the Celebration of the Arch Angel day; that makes both of us pretty darn special. Oh yeah, and something else that makes us extra special, we were both born with Down syndrome.

I wanted to share with you what things were like when I was born. I thought by sharing what my parents and sister went through would help you to navigate your family as well through the challenges of the future.. :)

I think that when special gifts from God, like us, come into the typical world, it takes a while for everyone to recognize this gift. That's where you and I come in to show the world that it's awesome to be ourselves, to be special, and to teach the world to accept EVERYONE, even a little cloud!

My mom says that you have five older brother's and sister's... that's awesome! What a gift! You will learn so much just from being with your family every day! I am so blessed to have an older sister too, but she only lives here part time now; she is away at college. I love it when she comes home to visit... she is the best "sissy" ever! I can't wait until I get to go to college too!

There were a couple of things that my parents did to help me to succeed a little easier in growing up and I wanted to share these with you... the first thing was that they had me begin to take special vitamins and enzymes when I was only five weeks old. (I still take them today, as well as others). I only drank breast milk for the first 12.5 months, but my mom would put her milk in a bottle for me mixed with these special vitamins three times a day. Boy, have they ever helped me! I am very healthy, and my body has grown at a typical rate, which makes me and my parents believe that my brain cells are developing and learning really well too!

The other thing that really helped me was that my parents motivated my body learn to move in that perfect "cross pattern" crawl. See Peter, one thing that happens with Down syndrome, and having that extra chromosome, is it makes our muscle tone a little softer than everyone else's. Because of this, sometimes it is more difficult for us to learn to do things, like sit up, crawl and walk, in the typical manner that your brother's and sister's learned. But, your family can help you with this, because learning how to move our body properly is such a fabulous foundation; not only for our muscles, but for our brain connections as well.

I remember my parents, every day, moving my arms and legs in a cross pattern movement. Even though I was only six months old, by doing this movement, every day, it helped to program my brain so that when I was strong enough to begin to crawl, I did the perfect cross pattern crawl! That was the first time I saw my parents cry and scream with joy! They knew that they could help me to learn to be the very best I could be!!!

Some other things that really have helped me learn to grow and develop well is that I am on a special diet. I drink goat milk and eat goat yogurt and goat cheeses. I also don't eat anything with gluten in it. It's really not bad Peter, I mean, this is the only way I've ever known to eat. I don't eat sugar, so I don't know that I'm missing anything.
The thing is, having an extra chromosome in every cell of our body makes everything a little bit more challenging. So, the research that my parents have done has shown that having a diet of simple, natural foods, makes it easier for my system to digest, therefore giving more opportunity for my brain to develop!
What are my favorite foods? Ha! I love anything with a strong flavor... I love kale, spinach, broccoli; the darker the green the better :) I love all fruits and I eat chicken, tofu, and ham. Mom makes rice pasta with vegetables, and I like that too, but I prefer to just eat the vegetables by themselves. My favorite crackers are vegi-booty and snap peas! Yum!!!

Regarding typical developmental milestones, not that we care much about them but our parents sure do... I was able to properly get myself into and out of a sitting position at 13 months. I crawled the perfect cross pattern crawl at 16 months. I was walking by 29 months. I was also reading words by 29 months! I was potty trained at 33 months.

I am currently 5 years old. I attended my first two years of school at a private Montessori pre-school in Phoenix and this year I moved to a school called Montessori Academy in Paradise Valley. This is a private/charter school that goes from Pre-K to 8th grade and next year they will begin to offer grades 9th - 10th as well. (they will be the first Montessori High School in the State of Arizona).

I am in Pre-K, and I have a full time tutor that attends class with me. I am the only child in the school with Down syndrome. I am doing very well :)
I know all of my letters, upper case and lower case and I know all of the phonic sounds associated with them. I also know my numbers/quantitative consistently up to 13 and I am working on 14-20. I love working with numbers and I love to succeed. I have a little bit of a perfectionist streak in me...so often I will watch and observe something until I feel confident enough to try it myself. That may also be partially due to the fact that I am a very visual learner, as most people with Down syndrome are.
I have so many friends at school, I just love going there every day!

Right now I am attending Pre-K part time, 8:30 - 11:30 - next year I will probably repeat Pre-K and go full time to ensure I am truly ready for Kindergarten when I am 6.

Every day after school I have something special that I get to do. I go to speech therapy four times a week, but that is because I also have Verbal Apraxia. Don't worry Peter, this has nothing to do with having Down syndrome, I just got a lucky dual diagnosis... It is a motor processing disorder, meaning that I understand everything that is being said to me, I just have difficulty expressing myself verbally. But I am blessed that there is an Apraxia specialist in the State of Arizona out in Chandler, and my mom takes me to her almost every day.
I also get to ride horses once a week; that helps me with my balance, my core strength and my speech. I get to do a tumbling class once a week; that helps me with my coordination. I also swim twice a week in the spring through fall, which helps me with my physical strength as well as my processing skills.

My favorite passion Peter is music!!! Oh my goodness, I remember my first Music Together class when I was only six months old... music makes my heart sing! I love to play the guitar, play the drums, and soon I will be taking piano lessons. I love to dance and listen to all kinds of music. Mom and Dad play classical music all the time and I love listening to the different instruments! I also love books and playing with my iPad!

However, one of my greatest passions is my family! I love to hug and kiss them, make sure they are happy and smiling, and to help out whenever I can!

I am so happy to have another friend like you Peter! Even though we are five years apart, we are like twins in the eye in dinosaur time! I can't wait to meet you and have our mom's become good friends!

And always remember... How sweet to be a cloud, floating in the Blue, a cloud that defines a Friendship, a special bond between Me and You!

In peace and friendship to you,



Noah Bryce Barbey xoxo

Monday, January 2, 2012

Happy New Year, 2012!!!

My hopes for this year is to post on a regular basis our daily activities. Being that this is only the second day of the new year, I am doing pretty well... :)!!!
On Sunday, January 1, we spent the morning at church. We attend Scottsdale Bible Church in Scottsdale, Arizona. Now, this is a fairly new adventure for us. Last Fall, Noah and I began attending the church because they had a wonderful children's ministry. I also really liked it as I was drawn to the contemporary service and message that was delivered each week.
Now, Noah was baptized as a Catholic, and my husband, Jacques is a practicing Catholic. We attended our local Catholic Church for the first year+ of Noah's life, until he was disruptive during the service. The Catholic religion does not have a children's ministry. I really felt the draw and need to attend church, but it was difficult without a Sunday school environment for Noah to attend. I feel that having the connection at his academic school environment as well as at a God based environment is the best of both worlds. I began searching last summer for the perfect environment and was drawn to attend Scottsdale Bible Church. It was here that Noah and I found a wonderful fit of the balance of teaching and guidance in a God based environment. I love that we are connected on every level in town.
This was quite the struggle for Jacques in the beginning; given that we weren't attending a typical Catholic church each week. He wasn't opposed to our attending Scottsdale Bible, but he also was not interested in attending with us.
However, yesterday was a new beginning. Jacques, Noah and I attended service to celebrate the New Year! It was a fabulous service and Jacques seemed to be very impressed with the sermon :) Also, Jacques saw how happy Noah is attending Sunday school and also how connected he is with his peers at church. Does this mean the Jaco will attend church with us each week? I have no idea. I know that it is in God's hands and we shall see what happens next week.
Meanwhile, Devin, our darling daughter from Heaven is very opinionated when it comes to organized religion. Which honestly, I can't blame her, as we were very indecisive regarding religion while she was growing up. I do believe, that in all due time, she will decide which path, which religion, will be the correct path for her to follow. I only wish and pray for God's guidance for her along the way.
Thank you for this wonderful opportunity for hope during the year of 2012~