Monday, October 31, 2011

I've Got Time...

My Aunt is on a medical mission trip to Nepal, so I've got approximately eight days left before I have to catch up on all the Halloween pictures and post the ones that she wants to see.

Since I have some time...I'm calling it a night.
We had a great Halloween and I hope you all did too!

I'll leave you with this photo from tonight....either I'm shrinking or he's getting taller.

HAPPY HALLOWEEN!

In order not to violate copyright laws and also in order to give credit where credit is due - you get a screen shot.

We were honored to receive an invitation to a very special Halloween Party, hosted by the same family that invited us to their amazing Easter Party.

Once again, we were so excited to be a part of such a special event and so very honored to share in this day with so many wonderful people.

More coming soon.

...and a HUGE THANKS to PT's Dad for sending the party pictures out!...


...and Aunt Sue...your pictures are coming soon!...

Saturday, October 29, 2011

There is a reason

why I buy only washable markers.



Oh, yes...she was very proud of herself!
At least she remembered to try to put the top back on when she was all done making a mess!

...and I wonder why I'm always so behind on everything.

Why, Why, Why?

We made a quick trip to another pumpkin patch this afternoon.

While Julien was able to go on all the inflatables, Addie had a lot of standing and watching Julien have his turn.

We were at the end of the inflatable maze when a little girl looked at Addie, then looked at me and said,

"She has a small face."

I simply said, "Yes. She does.".

When the little girl walked away, Chris and I both commented about that being the first time (that we can remember) someone saying that Addie had a small face...not a small head.

Well...the little girl just wasn't done.

We moved on to another inflatable and Addie and Julien were both inside when the little girl went inside too.

She was giving Addie a good once over, looking at her very intently.
Julien had stopped jumping and was just sitting and waiting - to see what the little girl would do.

The little girl asked me, "Why does she have a small face?"
and I replied,
"Because that's how God made her. I think she's cute. Do you think she's cute?".
She said, "Yes.".  (...because she is a very smart little girl...)

I could feel Julien staring at me, trying to judge my reaction, when thank goodness it was time for the little girl to leave.

It didn't bother us, it's just interesting to know what goes through the minds of some people when they look at my child.

...we had a great time at the pumpkin patch...and the weather is awesome right now!!!!...pictures coming soon.

Birthday Party at Bruster's

I had no idea that Bruster's had a party room or allowed gobs of children to not only meander through their ice cream making facility and freezer, but also to actually make ice cream to take home.

Well, apparently they do and we got to do all of that thanks to one of Addie's classmates turning five!

Everybody got to feel how cold the ice cream storage containers are,

while Addie clung to me,
then everybody got to taste some of the blue goo ice cream,
followed by watching a live demonstration on the art of making a waffle cone,
then we got to add M&M's (Mmmmm...my favorite), Oreo's or Gummy Worms (gag) to the already pink ice cream that was oozing out of the machine into the bucket.
There was a lot of hand holding in order to prevent five gallons of ice cream being dumped onto the floor.

Then it was time for a worm covered dirt cake,
followed by face painting.
Of course, there was no need to let go of the gummy worm, so it just went where we did.
This makes the list of my favorite pictures.
Addie couldn't help but take a bite out of the worm, while the lady was trying to show Addie the cupcake on her face.





Everybody was packed and leaving and Addie was still sitting quietly, eating her cake. 
Thanks D for inviting Addie!
We had such a great time!!!

Friday, October 28, 2011

Halloween Preview

A sideways Halloween preview...

(you can pause the music over to the right)


Wednesday, October 26, 2011

Four-Year Check-Up

I never denied being remarkably behind.
I'm catching up on all kinds of things, including routine visits that are only ten months past due. 
It's been a whirlwind kind of year.
After rescheduling Addie's appt a gazillion times, today was the day that we finally managed to make it to pay our favorite pediatrician a visit.

I am so incredibly proud of my little Chunky Monkey for her behavior today!
She was absolutely perfect!

While waiting in the waiting room, Addie was sitting on my lap and shaking like crazy out of fear, but she never said a word.
She was content to hold E.R. Baby and watch the rowdy boys run around the waiting room until our turn arrived.

Addie did a great job while having her vitals taken and an even better job during her exam.
She is such a sweet girl and did everything that was asked of her...well, everything except to actually talk to Dr. Dudgeon.
I couldn't get her to say "hi" or "bye" or her name or anything to show off the progress that we work so hard to accomplish.

I was just thrilled that she was so sweet and didn't get upset.
I'm sure some of that had to do with having a fabulous physician caring for her.

Addie received one vaccine today and even did a fabulous job with that.
She doesn't get upset over having to receive a shot, but she did get a little upset when she saw the nurse put on her gloves.
What a weirdo - my child isn't bothered by shots, but is bothered by gloves.
Addie sat so still on my lap while receiving the shot, was more than thrilled to get a brand new boo boo band-aid on her arm and then was such a sweet girl while picking out her sticker and telling everyone (except the doctor) "bye".

Addie gained one pound over the last year and is now weighing in at 30.5 pounds.
She is in the third percentile for weight and the third percentile for height.

I think she's perfect.

I really was OK this visit.
There are so many "routine" visits that have been emotionally difficult, but today was good.
I think it helped that Addie was so calm and comfortable, which put me more at ease.

..and, Addie's ear started draining yesterday...so, the routine visit wasn't perfectly routine thanks to Addie's "dysmorphic" features and the perpetual ear infections.

Showing off her boo-boo band-aid that lasted through her shower.

Tuesday, October 25, 2011

Football?

Yep.
It's over.
It was a great season.
Lets just say that in addition to other medical expenses that we incur for my second born child, my first born was more than thrilled to wear out the magnetic strip on my debit card.
We started the season with a dislocated kneecap and ended it with a cervical sprain.
I now know that people can get PT appts as early as 6:00 a.m.and that the time waiting in the waiting room to see the sports medicine physician of choice for my child rivals that of the time spent waiting to see an OB.  ARRRRRGGGHHHHH!!!!

My first born is doing well.
In fact, he's so good that he has already completed his second day of wrestling practice.

So.
Chris and I were walking through a local department store today when he stopped to look at a sweater.
He held it up and said, "Jenn, this would look awesome on you.  It would match the gray in your hair.".

Inhale.

...and they both wonder why my hair is turning gray so fast.

Chasing Rabbits and Pinatas

Last night Chris and I attended another PADS meeting because we love the time with our friends, love showing support to our friends and because we enjoy learning all we can, even when it doesn't technically apply to us. 
The guest speakers vary, last night it was a local pediatrician, full of valuable information.
The meetings are light-hearted and comfortable...organized and run by my dear friend Patti, so really, it's absolutely perfect. 
In December, my favorite Pediatric Dentist will be the guest speaker, so if anyone is interested in attending, please let me know - The meetings are intended for new(er) family's (friends) of children with Down Syndrome.
Chasing rabbits...but, I had the meeting on my mind because we had talked about the loving nature of our children and it reminded me of Easter ~~~

Just like at Easter, Addie had no desire to jump in to get anything for herself.
This time, she had no desire to grab the candy from the pinata.
Maybe she just didn't know what to do, she was just enjoying watching her friends have such a great time, although she did get a turn to break open the pinata too!
That was a lot of fun for her!
Chris didn't take any pictures because he wanted to watch.
After much, much effort and the realization that the pinata was made of indestructible alien space parts, intervention was needed to release the candy.
I walked over with Addie and had to pick up a couple pieces to hand to her.
She was thrilled to have just one piece, but I gave her one piece for each hand and grabbed a third just for good measure.
She was thrilled!



We had to leave the first party early because we had to make our way to party number two of the day...

My name is Peggy

Come on!

I swear.
It wouldn't be a day in the life of us if we didn't get stopped by not one train,
but two - just trying to get out of our little town.
It's not that we were on the way to put out a blazing fire or anything, but we were on the way to a pretty important destination.
and
it took all of about two minutes after our arrival for Addie to join right in on the fun!
She was more than happy to be right in the midst of all the boys.
She's such a brave little girl, I'm sure that comes from living with a big brother who is determined not to have a whiny little sister who acts like a "girl".

Sunday, October 23, 2011

Sweet Girl!

We didn't make it to any fall related festivities this weekend, so these pumpkin pictures from last week will just have to do.

I love that little things like a shirt with a pumpkin on it makes Addie happy.
She was all ready to show her friends at school!



I have no idea why I feel compelled to tell you that the trash bag in the background has recyclable products in it - not trash.
OK...I feel better now that I have cleared that up.



Vacation Day

I need a vacation day just to catch up from the last eight days.

My fabulous news of the weekend is that Mom is now back home!
Home health will be out tomorrow, Mom has tons of follow up appts and the two current antibiotics are hopefully working their magic.
Mom was sent home with a wheelchair, which is awfully hard for me to see her like that, but we are beyond thankful that she is home...and whole.
I really feel like this is just another bump in the road and she will be better soon. 
She is remarkably stubborn and determined and will overcome this setback...and Carli is one very happy puppy to have Mom back at home!
Thank you all so much for the prayers!

I think I am back on the road to recovery after having a minor accident involving my second born child trying to blind me.
Seriously.
...and just to tell you how warped and twisted my brain really is, in the midst of the enormous pain, I was wondering if there was such a thing as an epidural for the orbital cavity....because holy cow was I wishing for something just to knock me out and relieve the pain....
That might be a story for later.

...I'm slightly behind...on everything...as usual....but oh so thankful to have my Mom back at home and to have full function of both of my eyes.

Friday, October 21, 2011

mom update

good news from the mri, no blockages, good blood flow in the leg.
switched to two new iv antibiotics - hopefully these will work!
blood sugar all the way from 32 to 388.
looks like we are heading in the right direction considering where we were six days ago.

Thursday, October 20, 2011

:)

I am personally offended that someone would think that my Mother is not a fine example to follow.
I see no reason to have singled her out.

Wednesday, October 19, 2011

Not Much Mom News

Mom was too sick to go for MRI yesterday.
She had a vascular study late in the day, but no results so far.
Maybe today will bring more - and better - news.

Big Girl Helper

One of Addie's newest things is to help retrieve the Sunday paper.
She is awfully proud of herself!

After she brings it in the house, she helps me read through the paper by reorganizing it from one end of the living room to the other.
Once I sort through the reorganization, we find ads with animals or purses and work on cutting out the pictures.
That in itself is a chore, but with the help of adaptive scissors, we finally get the pictures cut out.
Lots of therapy taking place and Addie is very proud of the end result! 

Monday, October 17, 2011

Back at home...

with the pumpkins nowhere in sight, Chunk was more than happy to smile for the camera and
show off our art work!

Check out the grasp on the marker - such good work!

Not A Good Mom Report

Oooohhh...Mom's going to be mad at me for posting this!!!

I'm an optimist and I am also a very appreciative person.

I appreciate the fact that my Mother is being cared for by such an amazing team of professionals.
From the housekeepers to the Cardiologist, they are all wonderfully sweet.
They all have the best personalities and are doing all they can to help my Mother.

However, today was full of negative reports.

The MRI was a no-go.
The Angiogram was a no-go.
She is in acute kidney failure
with what appears to be one heck of an infection that is not wanting to come under control. 
She has decreased blood flow to her leg.
Her heart enzymes are still elevated.
Her blood sugar is unstable and through the roof.
She still has a high fever after 48 hours on two IV antibiotics.

So, I don't care if she gets mad at me for posting this.

She needs our prayers.

I will be more than happy to be subject to her scornful comments once she is back at home and well!

Please pray that the IV antibiotics eradicate the infection.
Please pray that her kidney function returns.
Please pray that her blood sugar becomes controllable (it has been into the 600's since she has been at the hospital).
Please pray for the ability to proceed with the Angiogram and for favorable results with restorable blood flow.
Please pray that the doctors and nurses will be able to make the best and right decisions for her.

I know we all have prayer lists a mile long, but I would so appreciate you adding one more to your list! 

Sunday, October 16, 2011

On a Brighter Note

We promised Julien that we would go and look at Halloween Costumes.
As we entered the store, Addie only wanted Julien.
We made it halfway down the first aisle when Julien spotted an arm.
He picked it up, handed it to Addie and kept on walking.
Addie carried the arm around the entire store with her.
At one point, she stepped right in front of a girl and her dad, trying to show the girl what she was carrying.  
Addie was apparently pretty excited about it.
I took Addie's arm, guided her away and apologized to the girls Dad.
He was super nice, told me that it was "fine" and right as he walked past, I heard him tell his daughter not to "stare".
Yes, that was "kiss a stranger" worthy.
Granted, it happened at the oddest time.
I mean I seriously could have understood someone staring considering a four-year-old almost mowed them over trying to get them to look at the latex severed arm she was carrying around.

Whatever.
We'll take what we can get.

Not Exactly How I Saw It Going

It's October and 85 degrees outside.
Ugh...talk about putting a damper on fall festivities!


We didn't make it to any pumpkin patches on this beautiful weekend, we didn't make it to the Buddy Walk, we didn't even make it to the grocery store.


Although I never need reminding, sometimes I need a refresher on daily life with my sweet Baby Girl.


This weekend has been a roller coaster of emotions.
Addie has had several moments of pure frustration caused by her inability to understand what we are telling her.
We are so used to daily life with her, but when our routine changes any at all, it provides new challenges to help her understand.
We had a stressful morning with Addie, all because she didn't understand some of the things that we were telling her. 
She was becoming upset, which just becomes more frustrating and upsetting and it hurts our hearts to see her try to understand, when she clearly does not.


As I was standing in a public restroom scrubbing washing my hands today and rehashing the events in my mind, I had a moment of clarity.


Addie is only four, but by this point, a "typical" four-year-old can hold a full conversation. 
They can tell you what they are thinking (heaven help us), what they need, how they are feeling and pretty much everything else under the sun.
Addie can't do any of that.
How frustrating would it be for any of us to go through daily life not being able to tend to self-help skills independently, not being able to tell anyone what we needed or how we were feeling?

When I stop and remind myself of that, it makes it easier to understand her frustration.

...and just when I thought the entire day was going to be subject to frustration...

Addie surprised me with a spontaneous word tonight!
I had left her in her room with Alley Brat and walked down the hall to put some clothes in my room.
I heard her walk in and called for her, telling her that I was in the closet.
She walked into the closet, holding her blanket.
She put her head over onto her blanket and said, "Sleepy".


It was so simply amazing!!!


It makes all the frustrating times worth it because I know that she is ever so slowly making connections.


We are taking it one minute at a time and can't wait for the next time our sweet Baby Girl surprises us with another new word or action or another milestone met.


We are so thankful for Addie and truly know how blessed we are.


_______


Sigh...we went over to my Mom's yesterday. 
Addie got to spend a lot of time with Carli, helped me wash her and even cuddled her after her bath..and then of course cried like crazy when she had to leave her behind.


Not long after we left, Mom ended up in the ER
and
is now back in the hospital.


She is incredibly sick.
Possible MRI tomorrow.
Please send prayers and well-wishes her way.
She hates when I post things about her.  I wouldn't do it except that we take all the prayers we can get!

Saturday, October 15, 2011

I Wasn't Asking For Much

Just one good picture with the pumpkins.

Last week we attended a birthday party at the pumpkin patch that is well over an hour north of our house.

Addie was thrilled to have the time away from school to play with her friends!
However, she was not thrilled to be subject to the obnoxious picture taker that was trying to get her to take just one pretty picture with the pumpkins.

She stopped, put her hands on her hips and gave me one of her forced smiles.
I can only imagine what she was thinking!


So I got a picture of her with pumpkins in the background....apparently while she was debating the need for a manicure.
She's looking past me at her friends whose parents are not forcing them to stand still for a picture.
I bet she thought that if she finally looked at the camera that I would leave her alone.
Nope.

This is how migraines start...



Thursday, October 13, 2011

Car Wash Torture

After leaving the farm, our car was in desperate need of a bath.
There is one car wash close to our little town where we typically take the car if Chris hasn't had time to clean it.
Addie has learned to love the car wash and even takes notice of it when we drive past.
This car wash was not close to our little town

and Addie was not impressed.
As soon as the tri-color foam hit the window, Addie started to unravel.


She needed lots of reassurance that everything was fine.


The Hay Ride...and that's a wrap.

It's not a typical day in the life of us if Addie isn't falling down.
Thank the heavens above that she has learned to try to catch herself - that skill took forever to learn.
Between her ability to try to catch herself and our watchful eyes, we are blessed to escape major injuries.
We all had a great time on the hay ride around the farm.
Addie was happy just to sit with Julien and snuggle in close.
This is exactly what happens when I ask my twelve-year-old to take a picture of us.
Yes...I do detect a hint of jealousy from all of you.
I mean really...we are fabulously photogenic and perfectly posed!
I took 156 photos at the farm and still couldn't manage to get the three of  them to look at the camera at the same time.

Bennett Farms 2011...that's a wrap!