Wednesday, August 31, 2011

Childhood Cancer Awareness Month!

September is Childhood Cancer Awareness Month! Kids with cancer have to give up so much of their lives while fighting cancer, many give up their lives. These children have to give up school, being at home, playing with their friends, riding bikes, swimming, and so much more.

In the United States, each weekday, on average, 46 families learn that their child has cancer. One out of five of those children, will die; that's over 3000 per year. Three out of five children diagnosed will suffer lifetime complications. Childhood cancer kills more children each year than heart disease, cystic fibrosis, diabetes and AIDS combined. In the past 25 years only one drug has been manufactured strictly for the children. Instead, adult meds are used and the dosages are adjusted, hoping not too much or not enough is given.

Childhood cancer can happen to any family, regardless of race, religion, economic background, etc. It strikes when you least expect it and can affect babies even as young as a few weeks old. These kids are forced to give up freedom of childhood, appetite, hair and so much more... and many lose their life. Are you willing to give up something you enjoy for one month?

I am challenging YOU, my friends and blog readers, to give up something for the ENTIRE month of September in honor of Childhood Cancer Awareness Month. I am giving up all sodas for the month of September... What will YOU give up?

I'll be posting more later this month with ways that you can help raise awareness and help kids going through chemo now and in the future.

Tuesday, August 30, 2011

The Choking Game...

This is GianLuc (Luca) Jordan. He was a typical 12 year old boy here in Colorado Springs. He was smart, athletic... a soccer and swimming star. He had lots of friends and was very outgoing. We didn't know Luca, though Kassidy and Keeghan are playing in the same soccer league that he did. We only heard of him through his death.

Luca died on August 17th after being in a coma for five days as the result of a dangerous game. I admit I've never heard of it before. It's apparently common among middle and high schoolers. This game is called "The Choking Game". These kids make themselves pass out which gives them this natural high - it's better than doing drugs, they say. But, it can go very, very wrong. Like in Luca's case, it can be deadly. On August 13th, Luca tied a belt around his neck, the goal is to feel this euphoria, and instead he lost consciousness and never woke up again.

As a parent of a middle schooler, this terrifies me. There are youtube videos and websites dedicated to teaching kids how to play "The Choking Game". When kids were asked, many said they've tried it or they know someone who had. Thankfully, neither Kassidy or Kameron had ever heard of it. But they have now. And hopefully Luca's story has scared them away from even thinking about ever trying this "game". We will talk about this often. Any time that we talk about drugs or alcohol or smoking, we'll throw this in there too. Luca's parents want to make sure that his death was not in vain. They want to bring awareness to the danger and the very real fact that thousands of kids across the country are playing this game and risking their lives every day.

PLEASE talk to your children about the dangers of this game. You can find more info here and read GianLuc's story here. You can also find his caringbridge page here. Please keep the Jordan family in your prayers as they begin their lives without their son and make sure that his life and death will help save other kids.

Monday, August 29, 2011

Just a quick update

Everything went well at the meeting at Kennedy's school today... we didn't have much time because Kennedy's teacher only had her planning period to be there, so we got through the eligibility portion and had to take a break. We're going to meet back up soon (not sure when yet, everyone's checking their calendars) ;) to write Kennedy's goals for her year.

I have a really bad headache (that is totally non-IEP related) but I just wanted to update and say that the meeting went well. Kennedy has a great team behind her who believes that she is a smart, capable little girl who can thrive in an inclusive setting. They are setting up the proper supports to make sure that she does... And Kennedy? She is right where she wants to be. Back at school with her brother and with friends and having a new adventure every day.

I'll update more after her official IEP... for now, I'm off to try to get rid of this headache!

Dr. Suess on IEPs

In honor of IEP day... if we come out alive, I'll be back tonight with an update! ;)

IEPs by Dr. Seuss
Author: Unknown

Do you like these IEPs?

I do not like these IEPs
I do not like them, Jeeze Louise
We test, we check
We plan, we meet
But nothing ever seems complete.

Would you, could you
Like the form?

I do not like the form I see
Not page 1, not 2, or 3
Another change
A brand new box
I think we all
Have lost our rocks.

Could you all meet here or there?

We could not all meet here or there.
We cannot all fit anywhere.
Not in a room
Not in the hall
There seems to be no space at all.

Would you, could you meet again?

I cannot meet again next week
No lunch, no prep
Please hear me speak.
No, not at dusk. No, not at dawn
at 5 pm I should be gone.

Could you hear while all speak out?
Would you write the words they spout?

I could not hear, I would not write
This does not need to be a fight.
Sign here, date there,
Mark this, check that
Beware the students ad-vo-cat(e).

You do not like them
So you say
Try again!
And you may.

If you will let me be,
I'll try again
You will see.


I almost like these IEPs
I think I'll write 6003.
And I will practice day and night
Until they say
"You've got it right!"

Sunday, August 28, 2011

The Pinata!

Today we went to Cadence's 8th Birthday party! Cadence is my friend Jenn's son and he is so cute! :) They had his party at a pretty park close by, so we headed over there after church. I totally forgot my camera (OOPS!) but they had a pinata so I took some video of that... Cadence went first, then Jaemen, then another little girl, then Kennedy, then Keeghan... there was still a long line of kids but uh... Keeghan broke the thing wide open! hahaha! He said he won! ;)

Some of the dads made a store run to get more candy and refilled it and taped it back up. I really wish I had my camera because it looked hilarious! Then the big kids went at it. I kept my distance then. They were scary! hahaha Anyway, here is the video of Kennedy and Keeghan hitting the pinata.

Note to self, "Don't let the kids play unattended with big sticks. Ever." :o)

Happy Birthday, Cadence!! We hope you had a great Mario Party!!

Q&A #209

Is Kass crazy jealous that she's the only one with school today?
She was at first, but when I told her the rest of us were going to go sit in the TriCare office, she got over it! haha

You always talk about the things that Keeghan says, but I can't picture it because I have never heard his voice. If it is not too much of an envision of privacy, I would love to see a video of Keeghan being...well....Keeghan. If for some reason you don't want to do that, I have no problem with it and you don't even need to explain yourself as to why! Keeghan's mom knows best! 
Actually, someone asked that on Facebook recently too, and I really SHOULD get some video of him. I'm really bad at doing video (if you haven't noticed! haha). I will do a little mini Q&A with him some afternoon this week. I take no responsibility for what may come out of his mouth though! hehehe Frank actually has one video of him and Kameron from maybe 6 months ago that he just showed me (spurred by your comment actually) but it's SO not politically correct! Any of my blog readers who voted for Obama would NOT like it! LOL ;o)

I tell my kids when you wake upin the morning go back to sleep:)now they all sleep late,yea !sometimes even until 11 or later, but I usually wake them up before that crazy right?
I tell mine that too, but they don't listen! LOL 

That is funny that you don't want to deal with dr's on base...I have been thinking I wish we lived near a base that had a hospital. We grew up going to hospital on base and had nothing but wonderful experiences. That been said I haven't dealt with one "as a parent" or in numerous years. I am sure it has changed. I haven't been to a hospital since I was 20 yrs old :) 
In their defense, I have heard that the Army hospital here at Ft. Carson is a good one. However, the one at Ft. Campbell was SO not, and well... once bitten, twice shy. I need ONE doctor (especially for the girls) who is aware of all their medical needs so I don't have to start from the beginning every time I go in just to get a referral. We WERE able to get a doctor off post for the kids NO problem! :) They didn't even bat an eye! I am currently on post at the Air Force Base, but I can switch any time I'd like. I just have to go fill out the paper work. Again. HA! Thankfully, I'm not sick very often!

I wanted to ask you, "How is your Mom doing?" I miss hearing about her and seeing the occasional photo. I'm betting all of you are missing her, too!
She's doing fine :). She just got back from a trip to Michigan visiting my grandmother and now she's getting ready to get her house on the market. She even has 2 prospective buyers already. The big problem now is that she has no idea where she's going to move once her house sells, so she has some decisions to make! Thanks for asking! :)

As a fellow cancer mom I agree. It's pretty much the only time I say the "sucks" word does! We saw a shirt this summer that said "f" (the whole f word) cancer. Ummmm yeah, but no. Know what I mean? 
LOL Yep, I've seen those shirts too, and I agree... we just stick with "sucks" haha. 

Enjoyed the post. We weren't allowed to say butt or the 'a' word. It was only fine to say tush, because the little boys next door were told to use that word, otherwise, we could only say bottom or derriere when we got a little older. One day recently, I used the word 'butt' in my mother's presence and I held my breath when I realized that she heard me. At 61, I still have issues! 
Too funny! I wasn't allowed to say butt either and so I let my kids say it. I think it's an act of rebellion. Sorry, mom! ;) (I also let them say "dang" which my mom also says now but I was never allowed to say! hahahaha)

Renee, have you heard of the gel things that you can use on the back of neck to keep cool? I think firemen use them. I'm sorry... I don't remember the official name. I got them at a fire & safety store. My girls used them in the very hot summer playing softball. Maybe that would help Kellsey stay cooler and you could keep them iced in a small cooler. 
Yeah, we actually have one, believe me, we have tried it all! Unfortunately, Kellsey (I just typed Kennedy... my brain's not awake yet!) Kellsey has a lot of sensory issues and can't handle it being on her neck. One of my friends also passed down a cooling vest that her daughter outgrew, but it's one that stays wet all the time and Kellsey flipped out when we put it on her. We're trying, slowly, to get her used to it with the help of her OT at school. Once we can get her officially diagnosed (hopefully with the help of her new ped) then we can get her approved for a new fancy cooling vest where nothing wet will ever touch her and hopefully she'll handle it better. As far as I know, she is STILL on the waiting list to see dermatology at Vandy. @@

The guy in black is a tie fighter pilot. If you were really dying to know. ;)
They're the guys who fly around getting shot by the good guys!

Hahaha Yes, Kameron (very harshly) informed me of this. They all look the same to me! LOL Maybe it would help if I had actually ever seen the movie! ;o)

you can buy those spray bottles with battery operated fans. they really help to keep cool on the beach so probably would help Kelsey keep cool as well.
We do take a spray bottle with us everywhere we go and spray her down. I promise we don't just let her bake. We have her constantly in any shade we can find and even cut out on the walk 1/2 way through so we could get her more water and get her under the tent.

I was wondering if Keegan has a form of Down Syndrome too? Or is he just really small for his age? I thought you mentioned that he was four yrs old? but he looks only about two ish!

Ummm no. He is almost 4 1/2 and is on the typical charts for a 4 year old. He's wearing 4T clothing... same size as his 7 year old sister. He's also a good head taller than Kellsey who is almost 5. He's the same size as all the other kids in his class. 

are you able to tell when she's had too much? what do the doctors say about treatments for the not sweating?
Yep, we know her signs of when she's "done". As I said above, she's still on a waiting list at Vandy, she has been for over a year and a half now. Not much we can do about that. We are hoping she can get in much faster here. 

Saturday, August 27, 2011

Buddy Walk - 2011

Today was our annual Buddy Walk, we look forward to this day every year. Of course this year is a little different because instead of being in Nashville for the Middle Tennessee Buddy Walk, we're in Colorado Springs this year. We were very excited to meet new friends, see friends we already know, and see lots of people with Down syndrome, everywhere!

We actually didn't think we were going to be able to go this morning. Kennedy woke up around 6:30 and wasn't feeling well at all. I was really worried about her! I made her a little bed on the floor in the living room and gave her a bowl because she said she thought she was going to throw up, and we called our friends to let them know we weren't going to be attending the Buddy Walk, after all. Then, a few minutes later, she perked up and announced she was "much better!" OOOOK! So we got ready quickly and kept a close eye on her... and she really was ok! Crazy kid!

There were a ton of people at the walk, they are estimating over 3,000! We got there around 9:00, the kids ate breakfast, we said hello to friends and then it was time to start the walk...

The kids with some Star Wars guys. 
I won't say who because I got yelled at for thinking the guy in black was Darth Vader. Apparently, he's not. haha

My Kennedy :) 

Kellsey chowing down on a bagel

Kennedy and Jaemen... he was whistling! LOL 

Keeghan getting ready to walk (and Kellsey in the background, trying to stay cool!)

Carmen and Jaemen

Kennedy's no fool, she had a chance to ride and she took it! ;)

Keeghan, our friend Tammy and their daughter Mia

Tammy's son Matthew

Jaemen and Carmen by Jaemen's sign! Next year I'll get on the ball and get one done for my girls, too!

Kellsey being silly!

Goofy girl!

They handed out chocolate chip cookies about 1/4 of the way through lol.

The Betancourt Family. They were friends with us in TN and moved here the same time we did! :) 

Kennedy ditched the stroller for a wagon ;)

Kameron on this big tank looking thing...

Keeghan got up there but was terrified he was going to fall! haha

Me with my Buddy Walkers! :o)

It's too bright out here!

Keeghan got to sit in a real fire truck!

He was so excited!!

Kassidy at the end, she took off with her friend Haylie, so we barely saw her.

Kellsey was WAY overheated when we got home. She decided to lay here and we were NOT getting her up! haha I put a cool washcloth on her head to get her body temp down and she's sleeping soundly there right now. She had fun though!

It was a great day!! We are sad we'll miss seeing our friends in TN this year, but I know theirs will be a hit too!! Until next year... :)

Friday, August 26, 2011

Happy Friday!

I've never been so happy to have it be FRIDAY! It's been a very long week for some reason. I think I'm just still not used to this back to school routine. It's kicking my butt. Yes, I said butt. Don't tell Kassidy's PE teacher, apparently it's a crime in that class. Kassidy is standing behind me right now and singing her ABCs over and over... at 6:45 in the morning... I think her plan is to drive me insane before I turn 33. She's doing a good job!

Keeghan is awake right now for some crazy reason... he has no school today, he could sleep in! He doesn't know what he's missing! Instead he's eating banana cheerios and yogurt raisins. I'd rather sleep. Totally. Frank has no work today, which is great after the insane schedule he's had lately. We're going to go to the Air Force Base later today and finally get enrolled into Tricare here and fight the battle to have the kids seen off post. Hopefully it won't be too hard. I've had some people tell me I'm going to have to kick and scream and throw a fit and I've had others tell me it shouldn't be too hard. All I know is, I will prevail. They will have an off post doctor. I will not mess with Army hospitals ever again. Who wants to start placing bets? Don't bet against me! ;)

And now Kameron's awake. Seriously?! He doesn't have school today either. At what age to kids learn the value of sleeping in? I remember sleeping until noon, waking up, eating lunch, and going back to sleep. And that was last week! Kidding! Seriously though, I slept in any chance I could when I was a teenager. Just ask my mom, she'll tell you how she had to drag me out of bed for school every morning. I think Kellsey may just be my night owl and my sleeper-inner. I don't think that's a real word, but I just made it one and spell check didn't stop me, so I guess it's fine. ;)

There's a new little girl from my hometown who has Down syndrome and was just diagnosed with Leukemia. She's two like Kennedy was when she was diagnosed. Her parents are, understandably, overwhelmed and in shock right now. They're at Vanderbilt right now and she just started chemo. They're sitting in a hospital room, probably on 6A, and have just been handed and huge book about "Your child and cancer". The thought of actually reading that book probably makes them want to throw up. I wish I could be there for them, to give them a hug, to cry with them, to pray with them, to tell them that Dalts on White Bridge delivers to the hospital and has the best baked potato soup, to promise them that they will meet the most amazing nurses in the entire world who will get them through this. And to assure them that it's ok to say "cancer sucks" every day for the rest of their lives. Because it does.

Kass just left for school. She and our next door neighbor walk the half mile there and back every day. It's good for them, I think. They get exercise, fresh air, and one day they'll be able to tell their children and grandchildren that they had to walk to school in the snow, uphill, both ways, backwards, and barefoot... or something like that.

Keeghan just asked me why it rains every day. I told him I don't know. He said, "Because the rain is crazy!" It is crazy. Last night we were in the middle of a downpour when I took Kennedy to dance. Thankfully, Frank was already home to stay with the other four. When we got to her studio, I grabbed Kenn and her dance bag from the backseat and we made a mad dash through the rain to the studio. On the way, I pushed the button on my key remote to close her automatic door. By the time we got to her studio, we were drenched. Fun times! About 25 minutes later, an announcement went out over the loudspeaker: "There is a black van with a sticker in the back window with 5 kids whose back door is standing wide open and your seats are soaked." Ugh. Seriously?! I know I hit that button! So I ran back out in the pouring rain and sure enough, everything was sopping wet. I threw the door closed and ran back in. Once the rain stopped, I went out to survey the damage. Kennedy's seat and the floor and our DVD player were all dripping wet. Awesome. Out of curiosity, I hit the button on my remote to close my door again and it popped right back open. Something was blocking it. At least I wasn't crazy. Much. I left the door open all night in my garage, so we'll see how it looks today. *sigh*

Well, Keeghan just said he's full, which in Keeghan speak means he's left half his bowl of cereal there. The boy eats like a bird. I've been sitting here for 30 minutes typing, and you've all been listening to my random thoughts. If you made it this far, you're all saints! I guess I should go shower and start my day. Wish me luck in my fight with Tri-Care. Hope you all have a great Friday!

Thursday, August 25, 2011

Q&A #208

Well, they are both 11-year-old Kassidys in 6th grade with argyle backpacks, the same purse, and a love for iPods and their younger siblings. I bet they'd be friends even with different middle names and birthdays. :) 
I bet they would, too! :)

Yay for easy IEP meetings :). Is this a shorter day for her than what she did last year? Is there any extra allotted time there with dropping everyone off for snowy days? 
Yes! Kellsey's days are MUCH shorter this year than last year. This year she will only be going 3 hours a day, 4 days a week. Last year she was in a private preschool which was open 6am to 6pm Monday through Friday (of course she was never there that long). I usually dropped her off between 8 and 8:30 last year and picked her up after I picked up Kass and Kam around 3:45. BUT she also got a 2 hour nap there which she won't get at this new school. They focus on learning and therapies (and of course playtime!) and they go go go the whole 3 hours. I imagine she will be ready for lunch and a nap when I pick her up! :) I doubt there will extra time allotted for snow days... school starts when it starts... but I did let Kellsey's teachers know she may be a few minutes late sometimes and they said that was fine. 

Wow, you just about have enough time to make beds and maybe go to the bathroom! lol If you ever wanted an "outside the home" job it looks like you'd have to wait till they are thru college! lol You are one busy Mom but its so worth it in the end! :-)
Yes I think so, too! haha Busy is good, I'm not sure what I would do if I weren't busy!! :) 

I have to say, I'm a little bit jealous of you not having to make and pack lunches every day. That is the part of the school year that I absolutely HATE the most!!
Actually I DO have to pack a lunch for Keeghan, I kind of forgot about that, but he's the only one :), thank goodness! Definitely not my favorite thing to do, either! 

Just curious as to what happens to your schedule when the snow starts flying? You might find you're in more of a time crunch between Kam and Kennedy's drop off and Kellsey's. Especially since you're not used to it. Winter weather alwasy messes me up, but it also solidifies my bus phobia so I deal with it! LOL. 
I think I'm still in denial about snow. LOL I guess we'll have to recalculate and re-plan... and like I said above, thankfully Kellsey's teacher is ok with her being a few minutes late. Too bad there's not two of me! haha

On a side note I have a question about the term "push in." This is a new term in my district and I am wondering how parents feel about it. When a new teacher asked if we were working for a full "push in" model it threw me. Having the off sense of humor that I do I of course had to briefly giggle at the term but then, later, I was thinking about it and wondered if others feel that it is almost a derogatory term as in, "Oh, look we have to push this child in..." I'm really just curious about parents perceptions of this term. 
I think this is a fairly new term everywhere, but personally I have only heard it related to therapies. Instead of pulling a child out of the classroom for therapy, the therapist pushes into the classroom. I have never really thought about it as pushing the child into the classroom, because really the child is already there. It's the therapist who is pushing in. :) I actually asked Kennedy's speech therapist about this (not the terminology but the actual practice) and she said she would probably do a little of both with Kennedy because, like Natalie said in the comment section, there are benefits to both sides. As a parent, I would like Kennedy with her class as much as possible, but I totally get that speech therapy is really important. If they pulled her out during Spanish class though, it wouldn't break my heart! haha Anyway, I went off on a tangent there! As far as the actual phrase "push in", I haven't really thought about it one way or the other, but maybe some other parents can weigh in here! :) 

I think I am going to steal your no tv policy on weekdays, school doesnt start here until the 29th but I can see the fights over the xbox and tv already. (btw I already stole your no sweets policy my kids are so not happy) 
LOL Well just don't tell them it came from me! I will start getting kid hate mail! hahaha

If Karson were my guinea pig I would cut his hair and save it to spin, because it looks like it would make a great spinning fiber. Wouldn't that be funny?
"Where'd you get that hat?"
"Oh, it's my guinea pig." 

LOL We were actually talking about that the other night! We said, "He has enough fur we could make a hat from all the extra!" Kameron didn't like that idea so much! hehehe

Kupcake is really cute!!! When you introduce them, make sure there is one more house than there is guinea pigs in the cage. This way there is no fighting over houses if they don't want to sleep together, and everyone gets a 'choice' so there is no discontent over it. :) 
Good tip! Thanks!!! Koko is definitely our house thief! For being the smallest of the bunch, he's a bully! haha The cage we have is expandable, so I want to buy an addition to it so they have LOTS of room to run and play. All in good time! :) 

Welcome to the family Kupcake... who chose his name?? 
Well, Kass and Kam googled "Guinea pig names" and went to the C & K sections. Yes, there are websites for guinea pig names! haha Then the four kids poured over the names but Kennedy and Keeghan made the final choice. They had to agree, that was the only rule. I personally wanted Konnor or Karamel! LOL I didn't get a vote though! HA! 

She looks so cute! Where did you get that cute outfit?
WELL, my friend Maria ordered it for Kennedy from Cruz' Designs for her birthday, but it was too small... turned out it fit Kellsey perfectly though! She does GREAT work so go check them out!!! I have another new outfit for Kellsey to wear to school another day that I bought her, but I thought this one was cuter. Keeghan says she looks like a scarecrow! haha

Has Kellsey found her new "spot" at home yet? 
Yes... two actually! She has one in our living room, right in between our recliner and coffee table. Anytime she is up here, that's where she prefers to sit. Always in the SAME spot. Then in her bedroom she always sits right next to her bucket of toys in the same spot to play. She'll get up to get a toy from another part of the room, but she always goes back to her spot to play with it. She's definitely a creature of habit. The only time I find her NOT there is when she spreads out her blanket in the middle of her room and lines all her toys up on it... but when she's done she goes right back to her spot again. She also puts her chair in the same spot in the kitchen to eat. My routine girl! ;)

Was Keeghan sad today that he is the only one not in school yet, or happy that he got all of his mom's attention for a few hours? I'm sure that was a special treat! :) 
He did fine because we stayed busy :). I hadn't bought Kellsey's school supplies yet so we went to Target and he helped me find everything on the list (except for tempura paint... we looked and looked and I still have no idea what the heck that is! LOL) and then we went to lunch. He may or may not have also talked me into buying him a pack of monkey stickers, too. *ahem* ;o)

Could you please send me an email address where I can contact you?

So has Kennedy asked for you to do her hair to match Charlie's yet?
OH yes! She actually asked the girl who did Charlie's hair to do hers too! haha The girl was like ummm! LOL I told Kennedy I could do it for her. ;) I haven't yet, but I will... hopefully Charlie's will hold up for awhile. 

Kellsey looks so happy in all the pictures over the past few months. Is it me or is she coming out of her shell a bit? She's precious (as is all the other K's!).
I think she is... I think this move has been very good for her... I'm excited to see what the future holds!

Thank you for your post. My son Dylan is now 3 and had open heart surgery at 4 mo. They did the xray at the pre-op and said everything looked well. I am currently waiting for our appt. at the Boston Children's Ds Clinic, but thought I would ask you as well - since Dylan had the xray already, do you know if he needs another one at this point in time? 
Great question! Dylan should absolutely have those x-rays repeated now that he is 3. Kennedy also had c-spine x-rays done at age 6 months before her first surgery, and she was cleared of AAI and AOI at that time. Because the bones are so tiny and still forming, it's easy to miss in young babies, there's also a theory that AAI/AOI can develop later as children grow and that the c-spine x-rays should be repeated every few years. One of my friends has a son who was cleared at age 3, but now as a teenager he is having severe issues with AAI. It's scary. The previous recommendation was age 3 because by that time the bones were done forming and it is easier to see the space between the bones. In my ideal world, every child with Ds would be checked every 3 years or so. And as one commenter posted in the comment section, an x-ray is not always 100% definitive either... it's only a screening. The ultimate deciding test would be an MRI... of course giving EVERY child with Ds an MRI to check for AAI might be slightly over the top... and expensive. ;o)

My daughter is four months and has a head tilt and tends to favor one side? Is this too early to be worring about this?
I'm not really sure... if she has a good pediatrician, I would definitely ask, if her ped is not aware of AAI, then call Dr. Samdani's office. He will be happy to answer any questions. Better safe than sorry! 

Wednesday, August 24, 2011

Keeghan's First Day of School!

Keeghan had a great first day of school today! He was so excited to get in and just GO already!! He teared up a little bit after he gave me a hug and kiss goodbye, but I think he got over it quickly. ;) When Kellsey and I picked him up at 1:00, his teacher told me he was quite the comedian. That about sums up Keeghan! haha

Once we got into the car, Keeghan talked non-stop about his day. He sang songs, looked at books, did puzzles, (a firetruck puzzle even!), played on the playground, ate lunch, did a paper about The Kissing Hand, and colored a little book... his was all green, imagine that! ;) He's excited to go back tomorrow and do more fun stuff.

Here are some pictures from this morning:

During my one hour and fifty minutes of alone time, I checked some email, took a nice long shower, did some dishes and then it was time to go get Kellsey. It was nice while it lasted! ;) Tomorrow and Friday, Kameron, Kennedy and Kellsey have no school because of elementary testing days. I have to take Kameron in at 1:30 tomorrow to be tested for reading. Kennedy's is already done. Keeghan doesn't have school on Fridays ever, so poor Kassidy is stuck going to school the next two days while everyone else gets to be lazy! HA! ;o) 

OK off to pick Kam and Kenn up from school! 

Tuesday, August 23, 2011

Down Syndrome and AAI/AOI and the AAP

So, if you're part of the Down syndrome community and/or if you've been reading my blog for awhile, you've undoubtedly heard about Atlantoaxial Instability (AAI) and Atlanto-Occipital Instability (AOI). I've talked about it a lot! However, I will do  brief overview for those of you who may be new here (or have a new baby with Down syndrome). I'm going to try not to get too long winded.

Around age 3, it has been recommended that children with Down syndrome get a c-spine x-ray to check for AAI and AOI. Some children with Down syndrome have this done younger than age 3 because they're going to have surgery and it's a standard precaution. So what is AAI and AOI? In laymen's terms, it's a separation between the vertebrae of the spine. AAI occurs between the C1 and C2 vertebrae. A normal separation would be under 5mm. AOI occurs between the occipital lobe and C1 vertebrae. A normal separation there would be 1mm.

AAI occurs in about 10% of kids with Ds. Most times it does not require surgery, but the child may be put on precautions such as no somersaults, no trampolines, no bounce houses or horseback riding... nothing that can further jar the neck. Sometimes though the gap is so large that it causes impingement on the spine. If not surgically corrected, this can eventually lead to paralysis or death. Many children with AAI have no symptoms of spine issues and therefore that pre-surgical x-ray or the routine x-ray done around age three is crucial.

AOI works very much the same, though it is more rare than AAI. When we had Kennedy's x-rays done at almost age 4 (she was busy with chemo at age 3), we were already at the hospital for a check up with her oncologist and I asked for orders for her x-ray on a whim. I had no reason to worry, no reason to think anything was wrong with Kennedy's neck, I just wanted to get it out of the way. Turns out that instead of the typical 1mm gap that most people have, Kennedy had a 12mm gap. She had severe AOI. Through a friend we were quickly put in touch with doctors at Shriner's Hospital for Children in Philadelphia who confirmed her AOI and recommended spine fusion surgery. In the meantime she was put immediately into a neck brace to stay safe. Any car accident, any bad fall, any wrong move would have been a "catastrophic event" for Kennedy. It could have killed her immediately. She had 16 surgeries before this time where she was intubated... any one of those intubations could have snapped her spine and she'd be gone. Just like that.

On July 2, 2008, Kennedy had spine fusion surgery at Shriner's Hospital for Children in Philadelphia and was put into a halo.
They fused her from her occipital lobe down to her C3. She had slight AAI as well and decided to just fix it all while they were in there. She was supposed to be in a halo for 6 months, but we had problems with the halo pins and it came off in 6 weeks instead and she went back to a neck brace. 

And this is what her spine looks like today... from the inside. She has lots of wires, titanium plates and cadaver bone in there. (That's a lovely thought, right?)

Today she is doing great! She goes back to Philly once a year and still has a few restrictions on what she can do, but she's here, she's alive and she's no longer in danger of a "catastrophic event". She was lucky, because her AOI was discovered and fixed before anything bad could happen. If you would like to read more about Kennedy's surgery, you can find the whole ordeal (in backwards chronological order) right here

Other kids have not been so lucky... 
Rhiannon Nisley
Take Rhiannon for example. In March, 2009, this sweet girl was just days away from her second birthday when she became suddenly ill. A few days later she passed away. Her parents were of course, devastated. An autopsy showed that Rhiannon died of spine impingement from Atlantoaxial Instability. She was over a year away from even being routinely checked for this condition. Her death rocked the Down syndrome community to the core. It woke people up and made them pay attention. 

Marcus Dickinson
However, many parents and pediatricians are either uneducated about AAI or brush it off as one of the "ghosts of Down syndrome". Yes, it's rare. And if you have a child with Down syndrome, chances are your child will be cleared with that one simple c-spine x-ray and you won't ever have to worry about it again. However, the new AAP Guidelines for Down syndrome were released a few weeks ago, and guess what they changed? They are calling this routine x-ray "unnecessary" unless the child is showing symptoms. Kennedy had no symptoms. Rhiannon had no symptoms. Axel, a 10 year old boy with Down syndrome who was recently adopted from Serbia, had no symptoms. However, his x-ray showed impingement on his spine. If he had not been home with his family, he probably wouldn't be alive much longer. His halo was just removed a few weeks ago following his spine fusion surgery in Philly and he's doing great now! He loves to point to his head and tell his mama, "Halo OFF!" with a huge smile. :) His future is now wide open. Marcus, another sweet boy adopted from Ukraine had no symptoms. He too had severe AAI and underwent spine fusion surgery with Kennedy's surgeon in Philly. He's doing fabulously now, thanks to an early catch with a c-spine x-ray. 
Axel Spring
For the AAP to say they want to wait until there are "symptoms" is ridiculous. They are signing death certificates for some of these kids. There will be children with Down syndrome jumping on trampolines, doing somersaults in gymnastics, and going to birthday parties at bounce house places and one day those non-symptoms could turn into a "catastrophic event". 

If you have a child with Down syndrome, you may be asking yourself, "What is she trying to do, scare us?" Yes. I'm trying to terrify you! For the sake of your children. It ticks me off that the AAP has so carelessly made this recommendation and that SO many pediatricians refuse to take AAI and AOI seriously. I have heard parents time and time again say that their pediatrician refuses to even write the order for the x-ray because it's not necessary. Really?! It's an x-ray. It takes five minutes. You need to demand that your child have this x-ray done around age 3... you need to emphasize that they write on the order to do "flexion and extension views" because many x-ray labs do these x-rays incorrectly. 

Before your child gets on a trampoline, before they get on a horse, before they climb into a bounce house, before they join that gymnastics or tumbling team, before they have ANY surgery requiring intubation, please get that x-ray done. This is SO important, and as parents of kids with Down syndrome, we need to stand up against the AAP and their "guidelines" because they're putting our children's lives in their hands. By the time our kids show symptoms, it's too late. If your pediatrician disagrees, then it might be time to find a new one. 

If you have any concerns that your child may have AAI or AOI or if your child's x-ray comes back positive for one of these, you can always get a second opinion and talk to the country's leaders in spine fusion surgery at Shriner's Hospital in Philadelphia. They are on the cutting edge of AAI/AOI research and technology and will soon be opening a clinic dedicated solely to this condition. Shiner's Hospital provides medical care to all children free of charge and travel arrangements can be covered as well. Please take this seriously. Please don't let your child's ped brush you off. This "ghost of Down syndrome" is alive and very real and it can affect your child. I'd love to see this message spread throughout the Down syndrome community, and I'd love to see my friends who are pediatricians pass it along as well. If you're a ped reading this, please please please kindly ignore those AAP guidelines and order that x-ray! It's 5 minutes that can save a life. 

*You can contact Dr. Amer Samdani at Shriner's Hospital for Children in Philadelphia at 3551 North Broad Street, Philadelphia, PA 19140 (215) 430-4000. 

Monday, August 22, 2011

The American Girl Store

When we knew we were moving to Colorado Springs, one of the exciting things that I knew was here was the American Girl Store. With Charlie being a very present part of our family almost all the time, I knew we'd eventually have to make a visit.

Yesterday when we were headed to pick up Kupcake, we decided to stop off there. We had no idea what we'd find, but... WOW! It was like every girl's dream (and every little boy's nightmare! haha). Kennedy about jumped out of her skin when she saw the building. (She didn't know we were going there.) She said, "That's MY store?!" Sure baby. Haha Kassidy and she explored every corner of that store. Kennedy and Charlie got a t-shirt and hat and Charlie got her hair styled...

Kennedy with Kanani, the doll of the year. She only asked for her about 15 times! ;)

Charlie getting her hair done... 

So pretty! Kennedy picked the hair style and the colors. 
The stylist talked to Kennedy the whole time. It was so neat! 

Kennedy and Charlie

After that we went to a restaurant next door called the White Chocolate Grille. It was "doll friendly" which meant that Charlie got her own seat... 
Kennedy and Charlie eating lunch... Charlie needed her own cup, too! ;)

Kellsey coloring away

Keeghan eating bananas

Chowing down on ribs... 

Their favorite food!!

After that we had to get going to go get Kupcake, but we want to go back to that shopping center. Kameron spotted a Lego store that he and Keeghan are really excited about and across the street? Ikea! AHHH! LOL 

Sunday, August 21, 2011

A New Special K!

No one freak out! It's not what you think! ;) As you know we have Karson and Koko, our sweet little guinea pigs, but lately there has been discord among the masses... errrr... the children. You see, there are five children and 2 guinea pigs. Now, we still have to be right next to Kellsey when she holds them as she likes to love them... to pieces! haha So that leaves 4 kids playing freely with 2 guinea pigs... Karson belongs to Kameron and Koko belongs to Kassidy and that left a very upset Kennedy and Keeghan. It was getting old quickly!

SO as Frank was browsing Craig's List the other day (which shows up as fraud's list when you type it into an iPhone text message, just FYI lol), he saw an add for a family giving away a free guinea pig. They are moving out of town and needed to find a good home for the little guy. SO on a whim, I sent them an email, and today we went to pick up Kupcake! (His previous name was Fluffy, but they assured us he never liked his name anyway! LOL)

Kupcake is now Kennedy and Keeghan's guinea pig (and Kellsey's when we can be right next to her). He's a sweet little guy, but he's two years old and isn't used to being around other guinea pigs... we tried it out for awhile...


Karson, Kupcake and Koko having a little bedtime snack

Karson, he needs a haircut! ;o)


And then we decided that it wasn't going to work out for tonight. They were all too restless and we had three guinea pigs and two houses in the cage. Yeah, you do the math! haha So, Kupcake is back in his cage for the night and we'll slowly integrate them together, I hope! The kids all love him though! He's a sweet little guy!! Oh and for the record, Kupcake's previous owner was a little girl named Keegan! I think it was meant to be! :) Keegan, if you're reading here, we're taking good care of Kupcake (Fluffy) for you! 

More about our day tomorrow! 

Saturday, August 20, 2011

SC Johnson's All-In-One Cleaning System (Product Review)

So recently, thanks to my friend Laura, I signed up for They were calling for people living in Colorado Springs to do a product review for a new cleaning system. I thought, "Well, I clean. I should try this!" I filled out all the forms, and today this came in my mail box:

This is the SC Johnson All-In-One Cleaning System. How many of you have multiple bottles of cleaner stashed in every area of your house? ***raises hand*** I do. I have kitchen cleaners under my kitchen sink, bathroom cleaners under my bathroom sink, more cleaners in my laundry room and utility room, and Clorox wipes stashed... well, everywhere! (But that's a whole other issue! LOL) I was excited to try this cleaning system out today to see how well it worked. 

The bottles are small, but they're concentrated. You fill the back of the actual system with water, and then click any three of the bottles of cleaner onto the system. You choose which one you want to use first, turn it to the front, and start spraying. 

The kids and I were watching a movie today, and during the commercial I decided to try this thing out. I loaded it up, walked into the bathroom and turned it over to Scrubbing Bubbles. I cleaned off my sink and faucets, clicked it over to Windex and cleaned my mirror, walked out to the dining room and wiped the hundreds of fingerprints off my sliding glass door, and then turned it to Fantastik and wiped down my kitchen sink. I sat down in time for the movie to come back on. It was amazing! No grabbing multiple bottles, no running back and forth to figure out what I needed next and no lugging a big bucket of cleaning supplies around the house with me! 

The best part is, you can buy the cartridges one by one, so you only buy the cleaners you really need or want. I see me going through the Windex faster than anything else. You can also swap out the bottles whenever you'd like and store the open ones in a storage bag they provide for you. 

I wasn't required to do a blog post about this product, I was only required to write a review on the BzzAgent site, which I did, but I wanted to share with you all too since I know most of you are busy moms like me. I don't know if this product is available in your area yet, but keep your eye out for it! It will be available at Albertson's, King Soopers, K-Mart, Kroger, Meijer, Safeway, Walmart and more. 

On that note, I'm off to find something to clean! :)

Our Routine...

Now that we are back to school, that means we are back into a routine. Every year is always a little bit different because our dynamics of where the kids are in school seem to constantly be changing! SO I thought, for those of you interested, I would give you a little glimpse of our days for now. I'm not including Frank's schedule in here because right now he's in training and so his schedule changes daily. He's finally getting to come home at nights, but usually after the kids are in bed, which is sad. The little 3 haven't seen him hardly at all in the last two weeks. I can't wait for this training to be over!

My alarm clock goes off at 6am. I get up, shower, and by that time Kassidy is up. Her alarm goes off at 6:15. She gets dressed and fixes herself breakfast and then I do her hair. She gathers her stuff and is out the door by 7am. She and her friend from next door walk to school, which starts at 7:30.

If Kameron is not awake yet, I wake him up (I've only had to do that twice this week) at 7:00.. While he's getting ready I wake Kennedy and Keeghan up. The three of them eat breakfast and then get dressed. While they are eating and dressing, I wake Kellsey up and get her changed and dressed and get her breakfast. While she is eating I do Kennedy's hair, then comb Keeghan and Kellsey's hair, teeth are brushed and we are out the door at 8:00.

I drop Kameron and Kennedy off in the car circle, Kam walks Kennedy to class, and this past week Keeghan, Kellsey and I have headed home or off to do whatever we needed to get done. Next week I will head to Kellsey's school and then Keeghan's. Then the middle of the day just varies... housecleaning, grocery shopping, and cat napping if I can squeeze it in. ;)

Once Keeghan and Kellsey are in school, I will have school pick ups at 11:20, 1:00 and 3:30. (Neither Keeghan or Kellsey have school on Fridays.) Once all the kids are home, it's time for homework. I help Kennedy with hers and if Kass and Kam need help (which they usually don't), I help them with theirs too. We have a strict "no tv" policy on weeknights (at least until after the kids are in bed! haha). Then after homework, Kass, Kam and Kenn each pick out a snack for the next day for school and gets it into their backpack (or sets aside in the fridge if it's something like grapes) and backpacks are placed back on the hooks with homework safely inside!

Next we get ready to eat dinner, which is usually right around 6:00. After that is bath/shower time for those who need it and then Kennedy, Keeghan and Kellsey go to bed around 7:30 (or that's at least when we start the process) and Kass and Kam pick out their clothes for the next day and then go to bed around 8:30. Once the kids are in bed, I pick out clothes for the little three down to their shoes, hair pretties, underwear, everything, and set it on the bench in the hallway, so there's no searching for clothes or shoes in the morning, and then I sit down to fill out any paperwork or sign any forms that need to be signed... which has been every night this week so far!

The next day we do it all again! The only variance is Thursday nights when we go straight from Kameron and Kennedy's school to Kennedy's dance studio where she takes dance from 4-5:30. Kass and Kam do homework at the studio while Kenn is dancing. We've only done this one time of course and then I had Kass' Back to School Night immediately after, so it was chaotic. We'll get Thursdays running smoothly soon enough, I imagine.

Just to add more to the mix, Kass and Keeghan just signed up for Fall soccer which starts the middle of September, so hopefully their practices won't be on Thursday nights! I'm anxious for Kellsey to watch Keeghan play soccer this season... they also offer a special needs league complete with shadows (helpers) for the kids, so if she shows interest in what Keeghan is doing, I may sign her up for the Spring season. I just wanted her to get used to the new routine of school and stuff first before I overwhelmed her with more. And then there's Kameron who says he might be interested in Karate. Hmm... we'll have to see about checking that out for him. As long as he promises not to Karate chop Keeghan. HA!

So, that's our week at a glance. If nothing else, I'm learning quickly how to get around my side of Colorado Springs! I made it home from Kennedy's dance studio all by myself on Thursday night, I was so proud! However, I got hopelessly lost on the way to Sam's Club yesterday. I was yelling at my GPS because it kept taking me in circles and telling me I had arrived at my destination when clearly, I hadn't! I love technology until it fails on me, don't you?! :)