Wednesday, October 31, 2012

It's Time to Change...

I would like to share something I think is very important and thanks to my friend Leah posting on her blog I am very happy to share this. There is a need for doctors to be better informed about Down syndrome, giving the diagnosis to new parents and giving correct, accurate and up to date information. Sadly students in medical school get little education in the regards to Down syndrome - the most common occurring chromosomal disorder.

I would like to share the story of Asa's birth and subsequent events. 5 years later and having another child I look back on things and feel like we were cheated. We did not know Asa would be born with Down syndrome, he was not diagnosed pre-natally. The day he was born is still kind of a blur but bits and pieces come back to me as I think back. He was born by C-Section and I was then knocked out because pain meds wore off. I was in labor for 25 hours and finally had him at 3 AM. About 10 AM the attending pediatrician came into our room, knelt down beside my bed while I happily held my new bundle of joy and blurted out the words "Your baby has some markers for Down syndrome but I am not positive so I am going to get a second opinion from Dr. D". Dr. D was our primary pediatrician. Dr. D came in later in the afternoon and said that he wasn't positive and didn't want to say for sure without the proper blood work. We also never got the cute footprints with birth date on it like we did with Gracyn, this might be irrelevant but it makes me think "why didn't we ever get Asa's"?. I did make a comment when the nurse gave me Gracyn's and she said we should of got one with Asa :( To make a long story short, it took a week to get the results and Dr. D called me, yes on the phone and said "Asa does have a Trisomy" at this point in our journey I had NO IDEA what a Trisomy was but could figure out what he was getting at. And this is where better education for doctor's would of done a world of good, because Dr. D didn't specify further, he didn't say Trisomy 21. Our shock and ah turned into pure love and joy for our baby and we never looked back, but Dr. D it seemed kept trying to burst our bubble. He wasn't a bad doctor don't get me wrong, he just wasn't the doc for us. Asa was also diagnosed with a mild variation of Cystic Fibrosis, Dr. D was the one who coined the phrase "Strike by Lightning Twice". Another instance was at Asa's 2 year Wellness Check-up and I asked about a AAI neck scan (Atlantoaxial Instability (or AAI) which is an instability in the neck which is common in people born with Down syndrome). At this point Dr. D chimes in and says he thinks Asa is too young for it and it wasn't like he was going to play football... This was one of our last visits with Dr. D and we switched hospitals and doctors!

Please go and read Dr. Julie Kinder's petition you can sign it here as well!

Tuesday, October 30, 2012

The wind blew...

We are A OKAY up here in New Hampsha', we never even lost power. Some around us did but ours never even flickered. Which is GREAT! When I went to pick Gracyn up from daycare they had lost power around 4:00, I was there a little after 5:00 :( They said they didn't have to close because it was warm and they were just sitting by the windows. The wind blew and we had a tree come down in the woods but nothing in the yard. We are suppose to get less then a inch of rain today and everything will be blown through by Trick or Treat tomorrow! Asa is SO excited for Halloween. I'll post pictures of SUPER ASA and Dragon Gracyn.

Thursday, October 25, 2012

Dun, Dun, Dun, Dun, DONE!

I have completed the two month consumption of my dining room table! FINI!

Do you see the puppy in the kitchen?

This is where the stairs run into the wall in the bathroom, but hey your towel is right there!

Now I'm going to shrink to 4 inches and sit beside the fire with a good book and enjoy all my hard work!

Tuesday, October 23, 2012

The House That Jackie Built...

Sometimes I do wonder about myself and how nuts I really am. REALLY, I'm not normal and their are many people that can attest to this, my husband and family to name a few. I have spent HOURS on this dollhouse that I'm building for Asa's Kindergarten Classroom. It has been almost two months since the first glue dried, but it did sit untouched for a few weeks. I still need to stain the shingles that were individually glued on and do touch up paint on the top roof and tower. Also, glue the gingerbread moulding (after paint) to the top roof and lastly glue the dormer roofs on after the stain! I have two more nights to complete the finishing touches and the BIG REVEAL will be at Open House Thursday Night at School.

If you are interested in building your own dollhouse I'd like to share a few tips:
- You will need to make sure you are gluing the correct ends of the walls together...
- You will need to follow instructions carefully and remember that your LEFT hand makes an L when you extend your index finger and thumb (the floors are on backwards)....
- Paint all 1001 pieces of trim...
- You will have to glue all window frames together 4 pieces at a time for interior and exterior trim.
- Don't get too obsessed with your interior decorating...
- And lastly, be careful of the glue fumes they can cause one of your eyes to twitch...


Bedroom/Sitting Room, don't mind the mess on the floor the maid hasn't come yet!

Bathroom View 1

Bathroom View 2

Living Room View 1 - My Fav Room!

Living Room View 2

Living Room View 3

Kitchen View 1

Kitchen View 2

Kitchen View 3

Game Room View 1

Game Room View 2 - maid hasn't made it here either...

No those aren't bars on the windows, this is a good part of town!  It's tape holding the shutters on while the glue dries :) :)

Monday, October 15, 2012

Birthday Boy

Gracyn's 1st Birthday how can it be. I kept the tears at bay when I brought him his cake and everyone was singing Happy Birthday. I kept thinking he'll only be one once and this moment will only happen once. It was tough but I did it. I didn't let myself get too caught up cause if the flood gates opened I'm not sure if I could of stopped. So many changes in the past couple months, my boys are growing SO FAST and it scares me to death that all these moments are going by at warp speed and I feel like I'm missing out, like I'm not making the most of it. I try so hard to make sure I'm catching it all, but it's going so fast and I've got the pedal to the medal to keep up...

Anyhow, Happy Birthday to my baby, the one who is attached to my hip every chance he gets. I hope this never changes even though my dear sister keeps telling him to cut the apron strings now! :)

The little boy with the million dollar smile!

He loves his Mamie.

Um, kids. Do you realize it's Gracyn's B-day? Look at him totally enveloped by his new teddy :)

Yeah Cake!

Can't forget this one. He did very good considering he hasn't had to share a Birthday for 5 years... BTW it's a toy gun, he goes out on the deck and sits by the back door and waits for a deer! I ask him what he's doing and he says "SHHHHH Deera!" pointing to the woods...

Thursday, October 11, 2012

What Goofers

Gracyn will be One on Sunday and it is great to see his friendship with his big brother blossom everyday. He is big enough now that they can really play! Undoubtedly his favorite person is Asa, they make each other laugh, sometimes cry, but most of the time it is just like this...
Daddy got a new Crossbow and the box it came in was really big and FUN!

Drool Monkey!

Wednesday, October 10, 2012

Today was the day

We finally decided it was time to put Fraser down. We really thought he wasn't going to make it through last winter, and he did. We really thought he wasn't going to make it through the summer, and he did. The poor old man just kept on ticking. He would of been 13 years old in January. He had really faltered but still had some pep. I want to share the story of Fraser.

Fraser did not come to be ours until he was 5 years old. Our old house sits beside a walking trail and one morning I was out on our porch with Russ and a woman walking on the trail yelled to me. She asked me if we wanted another bulldog. I looked up and said "really?" and then proceeded to wonder what was wrong with the dog if someone was willing to give it away... Fraser's owner was a lawyer and he worked 10 hours a day. He adored Fraser. We set up a meet and greet at our house for the following week. Russ and Fraser got along great and Fraser made himself right at home. His owner who lived a couple hours away said he'd make it permanent the following weekend. As the next week progressed we didn't hear from the guy, he called the Saturday morning when he was suppose to bring Fraser and said that he couldn't do it. He just couldn't part with him. We totally understood and were cool with it (even though we had prepared ourselves for a new family member). Later that summer we decided to go ahead and get a puppy and Frankie joined our family. Frankie and Russ were best buds, we were a happy 2 male bulldog family.

The following year we got a call from the sister in law who stopped on the trail that morning the year before. She said that her brother in law was moving to NYC with his fiancee and the fiancee didn't want Fraser to come :( He wanted to know if we still wanted Fraser, we were the home he really wanted him to have. I told her we did get another dog and weren't sure if we wanted 3! Well, the rest is really history and Fraser came to live with us the beginning of August 2005.

This is his 1st night with us. Wouldn't you know that would be his spot on the couch for the next 7 years!
He was the Bestman at our wedding!

He really was the best dog, he was a devoted companion to the entire family and his dog brothers. He had a little purr whine when he wanted something, it was cute but annoying and something that I hated but will be my most favorite memory.

He was just "Joe Cool!"

"I thought of you with love today but that is nothing new
I thought about you yesterday and days before that too.
I think of you in silence I often speak your name.
All I have are memories and your picture in a frame.
Your memory is my keepsake with which I’ll never part.
God has you in His keeping I have you in my heart"

Fraser - a trusted friend and companion who blessed us with the best years of his life...
January 5, 2000 to October 10, 2012

We put him under the apple tree in our yard. Rest in peace buddy, we'll miss you....

Tuesday, October 9, 2012

Hello Falloween...

Well Hello There Falloween :)
Asa has lost 6 pounds in the last 3 weeks. Between pneumonia and having EXTREME abdominal pain last week he has missed 2 full weeks of school.
Let's start with Tuesday last week. Asa had a follow up Audiology appointment followed by a ENT appointment to see about his Conductive Hearing Loss in his right ear. This all started a year ago at his 4 year wellness check and the standard hearing test, then tubes in February and now his 3rd hearing test - SAME RESULTS. We are getting fitted for a hearing aid on the 26th. We are going to try it for a month and see if he has any significant improvement. If it's going to be a complete battle I'm not sure if it will be worth it, but if it helps of course we'll fight it.
So we missed school Tuesday because of his appointments. Then Wednesday he woke up with a belly ache (me too and a fever) so we lay in bed all day watching TV. Thursday he was no better and crying out in pain, not good, went to docs. They chalked it up to the antibiotics really wreaking havoc on his belly. Friday not better and still crying out in pain, back to docs for abdominal xrays. Yup, things were all backed up! Even though he'd been pooping regularly - poor guy. After some Miralax and all those foods that help finally Saturday we had some relieve.... Hopefully in the future he won't be on two antibiotics at the same time!

More Falloween :)

Monday, October 8, 2012

Decorating on a budget

I love Restoration Hardware - only if I could afford anything out of their catalog! Well, I finally got my chance to decorate with Restoration Hardware and I didn't have to win Powerball to do it!

I have been building a dollhouse for Asa's Kindergarten Class. During Orientation Asa's teacher had mentioned that he was embarrassed to bring out their dollhouse this year because it is in such shambles but the kids love to play with it. If it were a real house the city would slap a big old "CONDEMNED" sticker on the front door. He is such a wonderful teacher and does such great things not only for Asa but each individual child that has passed through his classroom in the past 25 years!

Thanks to my Mom, she bought the kit. I got the fun job of putting it together! You can take that both ways cause it's had it's moments...

This has a window on left that needs to be cut out...
Once I have it complete I'll do a big reveal! That will be after I glue on each individual shingle and stain them! Glue together all the window frames and fit them, that is after I finish painting all the pieces and gingerbread trim that goes all the way around the roof base... It has been fun, thank God it's for 5 year olds that won't notice all the goofs! I'm certainly not a very good finish carpenter - LOL But it looks good from 10 feet away :) :) and the kids will love it!

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.