Friday, December 30, 2011

Diagnosis #4 and counting...

Ugh! I remember the days when Noah was first born and our main concern was the diagnosis of Down syndrome. However, not long after birth, we found ourselves spending six days at Phoenix Children's Hospital only to receive a second diagnosis, Transient Mylo-prolifitive Disorder. Hmmm. Down syndrome really isn't such a big deal!
By the Grace of God, we overcame that particular obstacle and could focus on our original diagnosis of Ds.
Fast forward four years, and now we receive the diagnosis of Verbal Apraxia. Ahhh, this is why our little man isn't able to speak to us yet, he has motor planning issues, making it difficult to verbalize as well as other children, even those with the same diagnosis of Down syndrome. Ok... move on to plan M (since by this time, we had already exhausted plans A-L).
So, we find the apraxia specialist in Arizona and proceed with many appointments at a very expensive cost, because of course, anything worth while is not going to be covered by the State!
Age 5 comes and goes... hmmm, still struggling with this verbal communication thing, and hey, did you notice, our attention span seems to be depleting. Oh, hurry, add more Ginko Biloba, that will do the trick. Add a little B12, some more fish oil. Wow, the poor little guy never gets to drink a simple glass of milk because every cup is filled with a vitamin or enzyme of some sort!!!
Well, now in doing research, I learn that apraxia is not just an issue with speech, but could be global; meaning this could be affecting his entire progression, including gross and fine motor skills. (is this why he doesn't like to draw or finger paint? what about climbing up on the jungle gym, or even just the simple task of jumping)?!
Soooo, I find the occupational/sensory specialist that is in the State of Arizona, and I get on the waiting list for the all dreaded... EVALUATION. Oh, how I hate these things!
So, my little, beautiful, perfect in my eyes, kind hearted man was evaluated on December 15. I just received the evaluation, all four pages of it. In a nutshell, it states that my little man...
"Presents difficulties with motor planning, even more so than the typical developing child with Down syndrome. In summary, Noah presents with decreased postural control (standing up properly) decreased core and upper extremity strength (weak tummy and shoulders) decreased fine motor skills (dressing, eating, writing, etc) difficulties processing sensory input (UGH!) and difficulties with motor planning affecting his ability to perform daily tasks in the areas of self-care, play and academics as required of children his age".
LORD HOW I DETEST THESE EVALUATIONS!!!
Ok, calm down. I recognize that this is just information, all good information to get Noah the help that he needs. I just wonder where the innocence of a simple diagnosis of Down syndrome went?
When I look at this image of my little man, only nine months old, spending the summer in Coronado... who would have thought that four+ years later we would be reading such cold hard facts about this little beauty!



However, my rock is not big enough for me to hide under any longer - but even better, I don't want to hide. I want to stand tall, be proud and help Noah Bryce be the best that he can be; no matter how many diagnosis labels "they" wish to attach to him.

I love you Noah, and Happy New Year to you!!!

Wishing everyone a peaceful, safe and blessed 2012~

Tuesday, December 13, 2011

Trend: A general direction in which something is developing or changing...

I seem to be developing a trend to my blogging style... one that requires an entry once every five months! Hopefully, 2012 will bring a challenge to that trend :)

So, to catch up since my last post in July...

Noah has started school at Montessori Academy, a private/charter school located in Paradise Valley, AZ. MA has classes from P-K to 8th grade, and they are working on creating the first Montessori High School in the State of Arizona. Noah is currently in P-K and attends class with 4, 5 and 6 yr olds. He is the only child with Down syndrome in the school, and it has been a very positive experience. We hired a full time tutor to attend school with Noah, and she is the most amazing angel! She works with Noah as well as the other kids in class. Noah has many friends and they all want to "work" with him during study time. He truly is quite the celebrity! I am so very proud of him!!! Here is a little photo montage of his first day at school...

Montessori Academy...


Uniform... Check!


Backpack... Check!


Lunchbox... Check!


"Let's Gooo!!"


The morning begins with Circle Time...


Time for "work"...


Good concentration!!!



School is Exhausting!!!


We adjusted very well to school, our new schedule, and adding in our therapies as well. In the fall we were attending school, then going to speech therapy four times a week, and swimming twice a week. (plus I'm supposed to fit in my program daily with NACD... oh yeah...Balance... isn't that the key... Balance)!

Before we knew it, Noah's 5th birthday was here!!!

On September 29, 2011, our little man turned five years old!!! We celebrated with a music party with 30 of our closest friends and family! It truly was a wonderful celebration, and the best part of the day was when Noah looked at me, and without uttering a single syllable, he thanked me! I could see the pure joy and happiness exuding from his soul... and he knew... This was a Party for HIM!!! Thank you Dear Lord for the greatest blessing of all... Pure gratitude from my little man!!!!!!

Happy 5th Birthday Noah Bryce!!!











The next thing you knew, we were into October... Although the weather was still in the triple digits for many weeks into the harvest month, we were able to celebrate a little dressing of the goblins and dancing of the witches... Noah decided to truly make a statement this year...

"One small step for man, one giant leap for mankind"!!!


Now here we are... middle of December. Where has the time gone? Hopefully the memories are imbedded into a disk, a drive, a memory stick somewhere... Time is precious... days, hours, moments... they fly by, forever gone and never to be replayed. This lesson of life, of a very fast and forward moving life, hopefully will teach us all one important and vital lesson...
Enjoy Every Moment! For only God knows how many of those precious moments we have left to share, to laugh and to cherish...

Wishing all my friends, in blogging world, mobile world and tangible world, a very Merry Christmas and a Happy and Healthy New Year!!!

In Peace and Friendship in sharing my most precious treasures...





God Bless and see you in 2012!!!

Monday, July 18, 2011

A long mental vacation...

I know it has been many months since I've posted on my blog. Life had become a little too overwhelming, almost to the point that I struggled with verbalizing my feelings and how to write them down. Now I feel like I am pulling out of the long depression that I found myself floating in this Spring/Summer.

I never had an issue with Noah being born with Down syndrome. We were just so excited that he was here and my goal was to research and implement whatever we could find to help him to be the best he could possibly be...





We went through a lot during his first six weeks of life. He was in the hospital for six days when he was three weeks old as they tried to figure out what was going on with his little system. In the end, it was diagnosed that he had Transient Mylo Proliferative Disorder, also known as a pre-leukemia disorder. His outbreak manifested through pussy scabs all over his face and torso. It was very scary!!!
However, by the Grace of God and the help of many angels he overcame all! When he was five weeks old, we had Noah baptized and we also started him on vitamin supplements and enzymes. By the time our little man was six weeks old, his symptoms were gone! His white blood count was perfect and he has been one healthy guy ever since!



This is a photo of Noah on his Baptism day; You can see the scabs and scars on Noah's face from the disorder. Within a week, this was all cleared up!!! Nothing short of a miracle :-)



Here are the supplements that Noah takes daily, and we recently added Curcumin and Ginko Biloba Extract.



So, over the course of time, Noah has had many, many therapies and continued to succeed and accomplish many milestones...

Noah learned sign language...


We were successful in potty training...


Noah does Hippotherapy every Fall/Winter...


He has been doing listening therapy at home using The Listening Program...


He is a whiz kid when it comes to technology - oh how we love the i-pad...


He has been in the hospital five times... Once for the Transient Mylo, second for the croup, and three additional times to have tubes put in his ears to ensure proper hearing...


Noah also participates in aqua therapy and music therapy, not to mention the many hours a week spent with his speech therapist to overcome the most recent diagnosis of verbal apraxia.

So... here we are, many hours of therapy later, with more and more therapy posted on our calendar. Then to top off everything, the tutor that has been working with Noah for a while now, Miss Amy, announced in April that she had the opportunity to work with one of the best school districts in Scottsdale. While I was very happy for her, I was very worried about finding the perfect person (again) to work with my little man.
The interview process to find a replacement took up the majority of our Spring, and was extremely difficult, to say the least.
But in the end, we were once again blessed and guided by Noah's many angels. We found Ms. Tammy, who is a perfect fit for Noah and our family! She is the ultimate combination of a tutor, therapist, nanny and a loving grandmother. Noah loves her and responds very well to her!

So, throughout all of this, I found myself having a pity party... feeling sad about Noah's diagnosis and development. I don't know what triggered this feeling, but I think it's because he will be turning 5 this year. Five is such a significant age. A child moves from a little person to a mini adult. Basically being able to be independent. I had the epiphany that Noah wasn't there... and the question of, will he ever be there? That was the big question. I never mourned Noah's diagnosis of DS. I was always too busy doing research to ensure that he had every opportunity available to help him be the best little man he could. I guess I had always believed, deep down, that one of these therapies would be the Holy grail for Noah to be as typical as he could.

This summer I struggled with that thought process. I had to remember who my little man was... he is the light of my life, he is perfect, just the way he is, and I love him with all of my heart!


Noah will begin a new school in August. He will be attending Montessori Academy in Paradise Valley. This school goes from Pre-K to 8th grade. We are very grateful and excited for this opportunity!
A couple of weeks ago I saw an ad that was connected with Noah's school, it was called Brainology. Basically it is a speech and listening program therapy that is held on campus at Noah's new school. After meeting with the director, I realized that we had to start this additional therapy right away!!! Beginning today, Noah is embarking on a year long educational adventure to help his brain to re-program itself to process information in a more tangible way. Here is the link to the program we are implementing into his daily routine...Integrated Listening Systems...http://www.integratedlistening.com/

I want to log his progress each day as we go through this year long journey...He will be seeing the therapist 5 days a week.

Today, Day 1, Noah did really well. Being his first day he had to get used to wearing the headphones with the bone conductor stimulation and the fanny pack. He also had to tolerate the headphones for the hour long program. During this time they worked on some coordination skills, playing ball, doing exercises, cross patterning, etc. Then the last 20-30 minutes, they were doing more calming things, such as playing with play-dough at the desk... playing with wind up toys, etc.
Noah seemed to begin to shut down during the last 10-15 minutes of the program. He was just looking away in a daze, but not necessarily stimming. After the program, he went with me to my office and was very compliant and patient. He was perfect the rest of the day, resisting going to bed a little bit, but went to bed at 7:00 and never opened his door. He was exhausted!

I will continue to document his progress and reactions to this new program. Is this the program that will be life changing for my little man? I do believe it could be... I think that this makes since, to recreate and stimulate brain cells and neurons that could truly make a difference in the thought process and reactions of my little man. By the Grace of God, this will help Noah!

Who could stop trying to help this little man be the best he can be... he is perfectly adorable!!!!

Thursday, February 24, 2011

Happy Birthday Grandpa...



Happy Birthday Grandpa... You would be 85 today!

You were 42 when I was born... 45 when I turned to you as my "dad" and lifelong father figure.

You were 52 when I would patiently await your return at the end of the day so we could ride our bikes down to the beach.

You were 62 when I was making your life a complete challenge with being the quintessential spoiled college student. :-)

You were 65 when the humor of your jokes were the hats that Devin would wear on a weekly basis.

You were 72 when you met my love and husband to be, Jacques.

You were 73 when you and Grandma flew down for our wedding in AZ. (the photo enclosed).

You were 77 when you joined Grandma in heaven.

You would have been 80 when Noah was born, and even though you didn't get to meet here on earth, I have the feeling that you two have met many times before ;-)

I miss you so much, and I cherish our special times together. I know that you are here, around, watching over Devin and Noah and keeping all of us on the right path.
I only hope that I can be as great a parent to my children as you and Grandma were to me!

Thank you for your love, your belief and acceptance in me as the individual I am.

Happy Birthday to you!!! With all my love...

Sunday, February 20, 2011

Speech, Speech and more Speech...The Apraxia Journey

I have one goal for Noah, one IEP goal, one have to, must have achievement... SPEECH - VERBAL LANGUAGE - COMMUNICATION!!!

In November, 2010 after attending a wonderful seminar about Apraxia, I was able to get Noah in to see the Apraxia specialist, Lynn Carahaly, owner and director of Foundations Development House in Chandler, AZ. I was very excited as I felt that this was going to be the right move for us, even if it is 60 miles round trip 3x a week. My boy will talk!

So, we have seen Lynn now for 14 sessions. One hour session 3x a week. He is making progress!! :-) My boy is actually talking to me! Last week I was leaving the house for an appointment and I said bye Noah, and he replied with "bayee mumm"! (he said bye mom!) ahhh, love it! Then yesterday, I was in the kitchen cooking dinner and he came in wanting me to rewind his favorite song on the video he was watching for the, oh, sixth time, and he continued to say "mooe" while signing more. I told him no, that he had watched that song enough. He then signed and said together, "oowa mooe imme" one more time... I screamed with joy and told him he can watch it as many times as he wants if he asks me with his words like that!!!

This was a silent little man not long ago, and now he can voice his wants and needs. Something else that is new, I can now ask him yes and no questions and he can answer. Ex: we are scrolling through the many recorded Jack's Big Music Show videos and I can ask him "do you want to watch Monster, Marching Band, Coo Coo Bird" and he will answer "yeah, or Nooo" I love it!!!

Below is a video that is combining his 2nd session with Lynn to his 14th session of last week. (2nd is gray shirt, 14th is green shirt)
He is now combining consonant and vowel blends as well as vowel/vowel blends which is a diphthong. So the word "my" is actually a consonant - diphthong. He has to make the consonant sound "mmmm" and combine with the vowel blend of "ahhh-eeee" to create the sound of "eye". Also in the beginning of the word "bounce"... it is a consonant "bbb" combined with a vowel blend of "aaa-oooh" to make that "bou" sound. It's amazing how complicated the human language truly is when you break it down is segments. It just shows you how tenacious one has to be to learn the English language when it doesn't come innately like the rest of the population.
This is just showing the amazing progress that he is making and it is reinforcing the fact that my little man WILL TALK!!!


video

Thursday, January 20, 2011

Exhausted!!!


Ever feel like life is flowing along at an even pace and then suddenly... bam! the rug is pulled out from under you!?!

Well, welcome to my world this past month. Granted, with all due respect, our trials and tribulations are nothing compared to some, and I recognize that, I empathize with others and what they are experiencing, and yet when my world gets rocked, ever so slightly, I feel like the sky is falling!

As you know we have been struggling with speech and verbal articulation for... well, forever it seems; but at least for the past couple of years. I feel like we are on the right path now with our current therapist, Lynn Carahally the founder of the Speech E-Z program, and the owner and director of Foundations Developmental House. She is a specialist of verbal apraxia, as well as oral apraxia (the latest diagnosis)!!! So yes, I do feel like Lynn is the pathway to our continuous search for that Holy Grail of speech.

Then there is our every day academics... Noah has been attending the same Montessori school for the past year and a half. There is always the question in the back of my mind... am I doing the right thing by my boy? Is he in the right environment to encourage his unlimited potential? However, every time I question this, I am quickly reassured when I see the alternative choices...
Last week I heard of a supplemental option for Noah a couple of days a week. This other program promoted the opportunity of one on one speech encouragement, which was six hours a week of a speech induced preschool. So, in my search for that infamous Holy Grail, I took him for a day of observation.

Well, it was quite a day of enlightenment... the class had a student/teacher ratio of 1-3, a wonderful ratio. However, spending about half the day there, I quickly realized what a fabulous environment he is currently in at his Montessori school. The supplemental school was very chaotic... lots of outbursts from the other kids, one child crying inconsolably, and a whole lot of crazy energy that neither Noah nor myself were used to! It didn't have that easy flow of his Montessori class. It made Noah very uncomfortable as I saw him shutting down, emotionally and socially. I'm so grateful that I took the time to observe the class vs dropping him off and expecting the best, as this was not the right environment for my little man.

We continue with our 3x weekly therapy and intense home encouragement with the hopes of successful conversation.

Noah isn't maximizing his potential while at his Montessori classroom. This is a primary class of approximately 30 kids ages 3-6. Noah isn't completing tasks nor moving on to more intense studies.
The suggestion was to have an "aide" to attend school with Noah to work with him one on one and help him to advance to the next level of his expected skills and cognition.
I think that this will be the best option as I want to keep him in the Montessori system as I truly believe this is the best for him, yet with someone working with him one on one and encouraging him to select and complete his tasks, this will help him gain both confidence and mastery of his skills.

By the Grace of God, all has worked out and we have found the perfect solution! Noah will have Amy attending school with him, M-TH and Friday he will go independently. (Amy currently works with Noah at home a couple of days a week and we she is working on her masters in special education. We love Amy!!!). My hopes is that by having Amy there daily for the majority of the week, he will know what it is he needs to accomplish throughout the day. On Friday, he will hopefully have the confidence from success earlier in the week that he will try to complete his work vs using his adorable good looks to charm the teachers to get what he wants!

Breathe... school seems to be on track, for today at least ;-)

Somewhere in the midst of all this chaos we have dealt with the holidays which includes lack of enthusiasm from my husband; daughter home from college (which I cherish) yet accompanied by her adopted cat, many transient friends and lots of 20 yr old girl drama (not cherishing so much); my mom and her husband John visiting (which I also truly enjoy, but having recently downsized to a much smaller home, it took a little... ok, a LOT of adjustment to accommodate so many people in one tiny abode). Oh, did I mention that my mom brought her dog, which liked to chase my daughters cat, which just worked up my two dogs... oh Lord, where is Calgon when you need it!!!

Post holiday's, after surviving the ever loving, soon to be missed chaos, came the infamous sicky bug. It began with Jacques being sick and in bed for a few days. Then it was Noah's turn. His ended up being an ear infection (first infection even though this is our third set of tubes, which have all been preventative for hearing issues) and he was on two different antibiotics and home from school for over a week.

So Happy New Year, a bit delayed but filled with the genuine intention.
Yes we are exhausted, however on the road to peaceful recovery and looking forward to a year filled with love, confidence and our continuous journey on the path to finding the Holy Grail of verbal language for our amazing little man!