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...

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!!!!


  1. Raquel, please know that what you experienced is something we all experience. We all visit a type of grief stage and it can reappear at any time in our journey and we don't always know what triggers it, it comes with thinking and figuring out things for our children. We have to think about so much with our kids. I have been there many a time with Sam. The trick is to not get stuck there. Do exactly what you did, concentrate on the blessings Noah brings into your life. Focus on forward progress. Our guys require us to parent at levels most will never experience but as a Mom who is further along on the journey...every moment is worth it. Challenging, life changing, sometimes even painful but so very worth it. Take care of you as you take care of Noah. I'm sending a hug your way!!!

  2. Thank you so much Sue for your kind words of wisdom! I am honored to have you as a friend and support along this journey of ours! The hug is greatly appreciated ;-)

  3. A great post Raquel. Please do keep writing. I'm reading and learning with you all the time. I also feel the same way sometimes, seems that is is a process that will always be there, as mentioned above. take care, oxox

  4. Hi Raquel,

    Hope all is going well with you. I'm curious as to how the new therapy is going. I would love to hear an update:)