Saturday, July 31, 2010

Kassidy's HOME!!!

Kassidy had a great time at camp! She has come home with lots of stories including a little boy who rolled down a hill into a hornet's nest... OUCH!! She was dirty and tired but had a ton of fun and immediately asked if she could go back next year. I said yes until I unpacked her dirty, stinky, wet, messy, nasty clothes! LOL It's a good thing I have a year to forget about that! haha At least she didn't get too involved in this:

Or if she did, she's not admitting it... much. LOL

Here are some pictures from camp... These first two are from our youth pastor Michael and the rest are from Kassidy's camera. She didn't take many, she must have been having too much fun! ;)

Some Saturday Funnies! :)

(click on any of these to enlarge)
Real math genius there...

That's usually where it is...

And they expected to find... what exactly?!

Everyone needs to be reminded of this from time to time. ;)

Our government dollars hard at work.

Do you think they were shocked?!

Bet she'll never break a traffic law again!

I think I know that lawyer! LOL

Only if they want to live...

I think that's kind of the point. ;)

And how did he do that exactly?

How dare he!

And you'd think it would drop after age 20...

Until they buy just one pack of gum!

Umm... no comment.

Friday, July 30, 2010

A glimpse...

of life at camp. I didn't spot Kassidy in there, but I may have missed her... can any of YOU find her?!

Q&A #152

no 6 yr old needs an ipod touch! do i hear spoiled for your brats.
First off, thanks for having the guts to leave your name ;). Second, actually, the iPod Touch has proven to be very beneficial for children with Special Needs. There is a never-ending list of educational apps out there that has helped Kennedy learn to read, do math, and even write. She shares it with her 3 year old brother who has learned his colors, shapes, letters and numbers from it. It has apps that are helping Kellsey learn to speak and one day she will benefit from all the other apps that Kennedy and Keeghan use right now as well. For us, this was a much better fit than a different handheld game system, like a Nintendo Ds, which may be cheaper but it's less educational and once you start having to buy games it really adds up. Also, with the Touch, you don't have to worry about losing game cartridges and it saves us from covering our house with countless flashcards. It's small, portable, and works great when you're in waiting rooms and/or the car as much as we are. I know many children with Down syndrome and other disabilities much younger than age 6 who have their own iPod Touch, and I'm pretty sure that doesn't make them spoiled, or brats. Thanks for your concern though. :)

Since she has to get blood work anyway, you could always ask them to check her titers. We have them checked before we get any vaccinations. In our case, they haven't needed any since they were two. They already had high enough levels. So we have skipped how many vaccinations that we would have otherwise done? They just order the blood work before our well child check, then if they need any they can do it while we are we don't have to have two appointments.
I realize vaccines are a highly controversial topic... In order for us to stay at our pediatrician's office, we must vaccinate our children according to the government recommendations. We are not allowed to skip or delay any vaccines (though Kennedy's were delayed because of chemo, but that was different). The titer idea is a good one though, maybe someone else can use it where they are. :)

Q from me, scary thought where is Kellsey going to school? same as Kennedy was?
Kellsey is going to a private preschool outside the school system, same as Kennedy did. There are special education preschool classes in the district, some of which are very good. I intended for Kennedy to go there when she was in preschool, but ironically, we were told she tested too high. (You can read more about that right here.) So anyway, with the need for Kellsey to be in school full day, she is going to a private preschool... she is surrounded by typical peers who will hopefully spur her development. She is happy. She is included. At least for right now.

Wow. This brought tears to my eyes. I have a 25 year old with Ds and I expect she feels like this quite often. It is so true, there are many things she CAN do by herself, but makes me crazy nervous! That sentence "I don't have Down Syndrome all the time" will always stay with me. Thank you for posting this. I think it's going to change the way I continue to raise my daughter.
And now YOU brought tears to MY eyes! :) Thanks for a glimpse into the future! :)

Absolutely!! And we've got some great races going on right now in TN. Ya know, I knew 100% who I was going to vote for in the governors race until I watched their debate and now...two weeks later I am still clueless so I have not early voted yet! Ya think I could let the fact that Haslam reads your tweets swing my vote?? lol He must be ok if he follows the Special Ks...:)
haha! Sure thing!! :) I've been talking to lots of people on his campaign! He's been up here in Clarksville a lot, I wish I could meet him! Not meant to be though, so far! They did send me some really cool graphics though to play with and a t-shirt! I need to do something with the images! Good luck deciding on who to vote for! :)

She needs her own camera to document her time ;).
She has one. She got it for her birthday. :) I'm sure she'll come back with lots of fun pictures!

P.S. In that second to last picture, Kassidy looks SO small!! Is she the youngest one there?
Hmm I don't think she was, though she may have been close! They let kids going into 4th grade and up attend, so there possibly could have been kids one year younger than her going. She's just short... like her parents! ;)

Thursday, July 29, 2010

Prayer request for my grandfather...

My cousin Debbie, my Aunt Marilyn, Bompie, Nonnie, and my cousin Becky's daughter Kylie (taken just about a month ago)

My grandfather, or Bompie as everyone knows him, is in the hospital and very sick. He had a stroke 2 days ago, but the first 24 hours showed him to be doing very well. He had regained some of his speech and movement on the right side of his body where he had lost it. We knew he had a long road ahead of him, but we were feeling optimistic. He wouldn't even let my grandma (Nonnie) feed him dinner that night! He wanted to do it himself! LOL If nothing else, my Bompie is determined!

This morning though, he took a nap and they haven't been able to wake him up since. A CT scan showed he had another stroke. They say he is responding to pain but he is not opening his eyes or speaking. Now we're not so optimistic. I'm pretty scared. I'm not ready to say goodbye :(. My grandparents live in California and so we haven't seen them since Kennedy was a baby. They haven't even met Keeghan or Kellsey. Please be praying for my Bompie, that if it's God's will that he will be healed and go on to live for many more years! You just can't ask for a better grandfather than him!!

Update! Not long after I posted this I got a text message from my cousin Becky and then a phone call from my friend Kelly who is a nurse at the hospital he's in and my Bompie is awake!! Kelly said, "Your grandpa said to tell you he loves you!" :) They said he is confused and disoriented, but he can move everything and he's talking and responding to everyone. Praise the Lord! Please keep praying!!!

Wednesday, July 28, 2010

Off to Camp!

This morning, Kassidy left for camp with a bunch of other kids from our church for the next 4 days! By now they are already settled in their cabins in Kentucky and probably having a BLAST!!! Kassidy's been talking about camp for WEEKS! We've been talking and preparing and shopping and now... she's gone! *sniff* And I didn't even try to follow the church vans out of the parking lot, I swear!. I can't wait until Kassidy comes home on Saturday full of stories, pictures, and yes, lots of dirty laundry!

Here are a few pictures from this morning!
Kassidy with her counselor, Carmen

Waiting to go...

The vans getting ready to pull away... *sniff*.

We miss you already Kassidy... even Kameron misses you! ;)

Tuesday, July 27, 2010

Kennedy's Birthday Party

On May 14th, Kennedy celebrated her birthday with her friends at school. She decided months ago that she wanted a Hello Kitty birthday party. I offered her lots of different choices over the months before her birthday, but she stayed loyal to Hello Kitty :). Kroger did a great job on her cake!!!

I don't want to post any pictures of her classmates without permission, but they all sang happy birthday to her, her teacher gave her a present, and then she got to blow out the candle!

Then it was cupcake time! Yum!!

They were also supposed to have a field trip that day, hence the cute t-shirt, but it was raining - HARD - so they did an indoor picnic instead. That was fun, too! :)

That night we went to Kennedy's birthday dinner. We went to Red Robin because they have macaroni and cheese and it's close to our friends the Porters! There Kennedy got to open most of her presents. She was so excited!

On May 16th, Kennedy's actual birthday, she opened her big gift from Frank and me, her iPod Touch. She had been stealing Kass and Kam's forever, so she was VERY excited to get her own! I have several REALLY cute pictures of her opening this, but for some reason she doesn't have a shirt on! LOL I know she opened it right after she woke up, but she must have taken her jammies off. Anyway, you'll just have to trust me on most of those pics! Here are a couple that are safe though! :) Can you tell she loves it?!

And you are now caught up on Kennedy's birthday! :) More later!!

Monday, July 26, 2010

I voted today!

Today I exercised my right to vote - early vote even, for our upcoming elections!! While we were in Philly my campaign signs were stolen out of my yard, but I guess that doesn't matter because today is what counted! I got to vote! :)

One of the candidates running for one of the offices was outside the polling place and asked if I voted for him as I walked out... fortunately, I had... otherwise that would have been REALLY awkward!
Him: "So did you vote for me?!"
Me: "Um... actually, no..."
Him: "Oh. Well, thanks A LOT... jerk!" hahaha

Actually when I told him that I did vote for him and wished him luck he said, "I knew you were a good voter from the moment you walked in the door!" haha Good answer! Love a politician with a sense of humor! :o) Now let's hope all the people I voted for make it past the primaries!

How about you? Do you exercise your right to vote?!

Lose the Training Wheels Camp

A couple weeks ago, The Down Syndrome Association of Middle Tennessee hosted it's annual Lose the Training Wheels Camp. Campers go every day for one week and work on learning to ride a bike independently. This is a task which may seem easy to some but can be more difficult for kids with disabilities. Here is a short clip of the week! I'm so glad these opportunities are around for our kids! :)

If the video above doesn't show up, you can see it at this link.

Sunday, July 25, 2010

Cancer sucks.

I know. I've said that over and over and over on my blog. But it does. Most of the posts I've done about cancer on this blog have been about childhood cancer. Obviously, living through Kennedy's battle with Leukemia, childhood cancer will always be a cause near to my heart. It will always touch home with me and my heart will always break when I hear of a new child diagnosed or another child who has lost their battle and gone home to heaven. I hate cancer. Really, truly, hate it.

Tonight though, I'm not talking about childhood cancer. I was reminded yesterday that cancer can strike anyone. It holds no prejudice. My beautiful friend McKenna is the mother of three young children, including two daughters with Down syndrome. On Friday she was diagnosed with Chronic Myelocytic Leukemia (CML). She has already started on oral chemotherapy which she will continue for the rest of her life. The emotions she is dealing with, as a mother, I cannot even imagine. You can read her post here and continue to follow her story on her blog. I know that she will fight this battle with strength like no one's ever seen. If anyone can beat this cancer, it's her.

Please keep McKenna, her husband DJ, and their three beautiful children Darah, Connor and Reese in your prayers. I know they'll all appreciate it. We love you, Powell family!!

I don't have Down syndrome all the time...

By: Dave Hingsburger

Dave Hingsburger is an advocate for those with disabilities and gives presentations on this topic fairly often:

We'd just sat down for lunch when we both heard that pronunciation of the word, 'Mother' that communicates so much. 'Muhhhhh-therrrrrr'. I glanced up and saw a frustrated and harried woman, carrying packages from the Bay and her son, a young man with Down Syndrome who was in his pre-teens.

Of course, I listened.

It seems that the mother wanted to go with him to get his food and then have him go with her to get her food, then they would eat together. Son, thought this was silly. Why doesn't she get hers, he get his, then they meet for lunch. She did an admirable job of keeping herself calm. I did an admirable job of just listening, not judging. Who knew what kind of experiences she'd had that led to this arrangement? They had been standing arguing and just before she moved again towards the court he said something that had a profound impact on me as a listener and she as a mother.

'Trouble is you think I have Down Syndrome all the time and I don't,' he said with real frustration.

She stopped again, 'What?'

'I only have Down Syndrome sometimes, when I'm learning something new or if the words are real hard. I don't have Down Syndrome the rest of the time when I'm doing what I know how to do.'

'And you don't have Down Syndrome now?' she asked.

'No, I know how to get my lunch, I buy my lunch at school all the time. I don't have someone with me all the time you know.' he was frustrated, he didn't even realize he'd said something of real importance, to me and to his mother.

'So,' she continued looking at him hard, 'you don't feel like you have Down Syndrome all the time.'

'No, most times I don't even think about it,' he said.

She said, her tiredness seemed to be gone, 'Go ahead, we'll find a table after we've got our food.'

They disappeared from view.

Joe and I looked at each other. I said to him, 'That kid should teach classes to parents of kids with Down Syndrome.'

Saturday, July 24, 2010

Q&A #151

LOL....did the masses finally pressure you into posting at least something! so glad we are friends on FB. Hope y'all are having a good and somewhat relaxing summer!
LOL Well, I was really just attempting to clean out my email box and all these comments were sitting in there staring at me! HA!

I didn't understand the concluding part of your article, could you please explain it more?
Ummm I'm not quite sure what part you don't understand. Let me know what you don't understand and I will try to explain it. :)

All of your children are just so cute, but that Keeghan! I could just eat him up. I love little boys who have a sweet smile, but also look like they could be full of mischief.
LOL He is definitely full of mischief!! haha The twinkle in his eye says it all! :o)

It struck me as I was watching this that he's singing about going outside, but yet everybody's inside watching it. Ironic, no?? HAHA!
LOL! Very true! :o)

She looks adorable! Is she potty trained yet or does it not matter for this school?
She is not potty trained... and nowhere near ready. Thankfully, they are ok with that in this 3 year old class! I need to get Keeghan fully potty trained and recover from that before I even begin THINKING about starting with Kellsey... otherwise you'd all be going to my funeral! LOL

awww she's so darn cute ;). Do you totally wonder what goes on in that pretty little head of hers?
ALL the time! LOL

What a transformation from less than a year ago! Do you have contact with the orphanage? I think they would enjoy seeing a picture of her looking so well & healthy.
I don't personally, but one of my friends just went back there to adopt her second child and took pictures to our facilitator. If another Reece's Rainbow family goes to that orphanage, I plan on sending pics with them, too! I would love for them to see her.

Would you happen to be going to the downsed conference in Atlanta Setp 9-11?
I'm not sure... A few people have asked. I am considering it.

Lori in PEI
Did you see the Regis and Kelly show while they were here? It really IS that beautiful in the summer. Winters not so much!

I didn't see it... I would still LOVE to get there some day!

So the Down Syndrome growth chart has them smaller than the other growth chart or is it just a wider range of what's seen in children with Down Syndrome?
Yes, I believe the Ds growth chart has them growing slower since most kids with Ds are small... but don't quote me on that!

So what was wrong with the cake? It looked a little plain, but not too bad. Did you get your money back?
Ugh, they didn't follow any of my directions and you could barely read his name. Even the colors were not what I asked for. I didn't get my money back, but we'll never go there again. It was the second time in a row they screwed up on a cake. Kennedy's cake came from Kroger and they did a MUCH better job.

I Have A Voice...

Powerful video promoting Down Syndrome Awareness. Make sure you take the time to watch it!

Friday, July 23, 2010

Kennedy's 6 Year Well Child Check Up

Kennedy had her 6 year well child check today! She is doing GREAT! She weighs 32 pounds and is 39 3/4 inches. She's pretty much stayed the same in weight, but she's grown A LOT in height in the last year... almost 2 inches! She's not even ON the typical growth chart, of course, but she's in the 25th percentile on the Down syndrome growth chart for height and just under that for weight.

When her pediatrician came into the room, Kennedy read her a little bit of Green Eggs and Ham, which made her smile. Who doesn't love Dr. Suess, especially in Kennedy's cute voice?! Of course Kennedy was mostly disturbed that someone had colored on the book! LOL

When her ped was checking her over, Kennedy said, "don't forget my eyes... don't forget my ears... don't forget my mouth." Her doctor said, "I think I've got it covered, Kennedy!" haha Maybe she'll grow up to be a nurse! One of Kennedy's ear tubes is falling out, but other than that she is a healthy girl!! That was so nice to hear and even BETTER to be able to say/type!

She does need two vaccines... a chicken pox booster and Hep A, I think, and she needs to get her thyroid checked; but she wasn't feeling well this morning so we're going to wait until next week for those. She seems to be feeling just fine this afternoon, but better safe than sorry!

Anyway, that was about it... quick and painless (until next week's shots anyway!). :)

Keeghan's Birthday Party

On May 1, 2010 (Keeghan's actual birthday), we had his 3rd birthday party! We celebrated at my mom's house with a few close friends. He wanted a Yo Gabba Gabba party, of course! He had a great time opening presents and running around with the other kids! Kellsey's not in any of these pictures because she slept through the whole party! LOL
The party table...

Keeghan's cake, which WalMart did a HORRIBLE job on!

Waiting patiently...

Silly Kennedy...

And crazy Kassidy!

Singing "Happy Birthday"

Blowing out the candle... Look at Kennedy's face! LOL

Present time! YAY!!!

Cool! Yo Gabba Gabba blocks!

And a memory game!

Mr. Bump!!!

This is just what I asked for, mom!

Look Kennedy, we can play this!

A spiderman costume!

He even took time to read the cards... or maybe it was playing music! ;)

All our friends at the party!

It was a fun day... even if it was raining really hard... it was the first day of the Great Clarksville Flood. So glad everyone braved the weather to come!