Thursday, July 29, 2010

My Letter to Oprah

Dear Oprah Producers,

My name is Jackie and I am the Mother of a wonderful little boy named Asa. Asa is chromosomally enhanced, I think of him as bionic. He's got extra good stuff, much like Spiderman or Captain Courageous.

There is a very special group of people who are bonding together to yell from the mountaintops, "CELEBRATE DOWN SYNDROME"! October is National Down syndrome awareness month and what a great show it would make to do a little celebrating in honor of it! I am one of those people whose life has been changed by 3 copies of that magical chromosome 21!

It would be fantastic if Oprah could help us "Yell it from the Mountaintops" how amazing it is to be a parent of a child with Down syndrome, it is very hard to describe in 2000 characters or less.

There is a whole community that shares in these pleasures with me, most have blogs including myself (www.henryfamily-lifeiswhatumakeit.blogspot.com) that can help me explain. Enjoying the Small Things (www.kellehampton.com), Life with Chicky, Bubba and Nika (www.thebalsisfamily.blogspot.com) and one great web board www.downsyn.com - it was started by a couple after the birth of their son in 1997 as a place where parents can go ask questions, share their stories and be a part of a Down syndrome family from around the world!

It may be 3 copies of the 21st chromosome that causes Down syndrome, but it's purely magic what it creates.

Thank you for your time.

Sincerely,
Jackie H.

Monday, July 26, 2010

Random Rambling

I always feel like my posts need to be accompanied by pictures - I don't have any new pictures right now... As usually we've been busy, Brian's softball team, work, therapy, work, therapy, shopping for new (used) cars without any dings, dents or scratches. This is Brian's scenario currently. The poor guy has had a 1994 Toyota pick-up for 6 years. This is a guy who's previous vehicles would be a brand new Jetta every couple of years - that received a lot of washing, waxing and "wet" tire look. When we got married it was not phys able to have 2 "nice" car payments. Well, the old truck still looks good, but her brakes not so much. I prefer a truck that has them! So, it's off to find a "good" used truck with high miles but looks better then it's miles. It's going to be a challenge!

Mr Asa is doing great! He's saying more and more words everyday and repeating a lot more too! I think his new therapy with the school district is going beautifully. It's always hard to figure out "why" when he has a growth spurt. Is it really therapy, or is it us? Everything is always a "learning" experience. There is not a day that goes by that I'm not trying to work in a therapy thing or a learning thing in ALL that we do. And sometimes I feel like I fail him because I'm not sure if I'm doing enough... I think part of the increase in speech is due to daycare - it will be a month that he's been full time and if he doesn't speak up he may miss out. At home we know what he wants through his signs and body language, but daycare he hears the other kids and I think is picking up a lot faster.

We've also been to our follow up appointment for Asa's AAI neck scan. The AAI neck scan is a recommended x-ray of the neck for any child with Down syndrome. It was originally established for kids who wanted to participate in Special Olympics, due to the fact that some kids with DS have an instability in their neck because of the spacing between the C1 and C2 vertebrae, if there is too much spacing their is a small chance that the spinal cord could get pinched between the two. Asa's instability was borderline and the very caring and easy to understand Orthopedist specifically pointed out measured and re-measured and is not concerned about Asa's neck. All he said was that Asa would only need another x-ray before he starts to play sports - and this my friends was said with no hesitation (ah, um - ex-pediatrician listen up!) More on the health front - we go tomorrow to the Cardiologist. No worries, just a routine check-up (another ah, um) Asa's EX-pediatrician never followed the DS Healthcare guidelines from the get go - I think he is too set in his expensive fancy car inheritance "I know better then some silly guideline" to care about following routine! I digress, Asa should of had an EKG when was born - he did not. There weren't any obvious factors to his ex-pediatrician to be concerned - fine. I want to make sure there is NOT. Lastly, we go see the GI doc after our well overdue vacation next week. Celiac on his annual blood work came back high - please pray for my sanity, cooking, meal planning and Asa's belly that we DO NOT have go gluten free!

On vacation next week - I hope to have lots of pictures then!

Wednesday, July 7, 2010

"Holiday, hmm, hmm, Celebrate"

"We took a Holiday.... Now it's time to Celebrate.... HOLIDAY, IT WILL BE SO NICE!"

If I had the time to attach music to my posts this one would be playing Madonna's "Holiday" Ace and I went to Maine for the 4th of July, we left Daddy at home because he had to work.

It WAS sooo NICE!


video

There was this crazy kid that kept flopping himself down in the puddle and totally loving it!

He also loved rolling and making sand angels. He had sand EVERYWHERE! Every nook and cranny I think we both still have sand in our ears...

We went down to the Beach to watch the Fireworks, AND SO DID EVERYONE ELSE!

It was a beautiful evening though...

Asa and his favorite person in the world - GRAMMY!

We also went to York's Wild Kingdom Amusement Park - *disclosure* majority of these rides were here when I was Asa's age....
He's in there behind Ashleigh...
This thing my mother informed me IS as old as I am. If you add it together I'm only 7 but the 3's in front not the 4! LOL

video

It was a wonderful 3.5 day weekend, thanks Grammy and Grampy!

About Me

My photo
My name is Jackie and I am a mother, wife, friend, sister, daughter, cousin to many, and a dreamer of sorts. I dream of many things and one is a life full of acceptance, achievement and success for my Super Hero son Asa. He's got extra good stuff that comes with a little thing called Down syndrome. We live in the beautiful state of New Hampshire with our 2 Bulldogs; Rosie, Frankie and 36 chickens.