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".
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!!!