Tuesday, March 31, 2009

And the virus moves on...

Kennedy has caught the bug. She came home from school yesterday and about an hour later she felt warm. She was over 101... she shot up to 103 by midnight and hovered there all night. Today, even with Motrin and Tylenol she is around 102. Stupid virus. I really thought we were in the clear.

We were planning to go to Chattanooga today to see some friends. Kass and Kam are on Spring Break. So far though, it's proved to be boring for them. We are hoping to be able to take them to the movies to see the new Monster vs. Aliens. Anyone seen it? In the meantime we've been having a Wii marathon and a movie marathon, and I've been playing lots of scrabble on Facebook. If anyone wants to play, let me know! It's addicting! :)

If you haven't seen the Lake House, it's AWESOME! Must rent it today! (It's not scary, I thought it was a scary one but I must have it confused with something else.) 27 Dresses was also really cute! We also watched Slumdog Millionaire. That was good, but kind of sad... I dunno... there were a few more too, but those are the ones that stick out.

Frank is at the store right now with Keeghan. Poor baby was going stir crazy! Frank's going to make carne asada for dinner tonight. YUM!!! Anyway, that's about it. If you haven't been over to Kellsey's blog today, we made over $1,600 on the auction!!! Thanks so much to everyone who helped out! The cruise giveaway ends tomorrow! Don't miss out!!!

Nuff babbling from me! :) Hope you all are having a good day!

Today is THE day

r-word.org

Why? I've explained it all before. Need something more? Watch this.


And this.


Seriously.

Monday, March 30, 2009

What kind of shoe are you?

I'm Flakey?! LOL




You Are Flip Flops



You are laid back and very friendly.

Cheery and sunny in disposition, you usually have something to smile about.



Style is important to you, as long as you can stay casual.

It takes a lot to get you to dress up!



You are a loyal and true person, though you can be a bit of a flake.

You tend to "play hooky" and blow off responsibilities a lot more than most people.



You should live: By the beach



You should work: At a casual up and coming company

Monday Moment for Down Syndrome - Brittany's Song

Brittany's Song
By: Jonathan White


It was a Labor Day to remember when she came into this world
it was the day we had waited for so long.
Then the Doctor came and said to us with worry on his brow,
we’ll have to take her down the hall with us for now.

The word came back the very next day, your girl will be just fine,
but she will have some special needs unlike yours and mine,
but she will give you lots of love the kind that’s seldom seen,
and now I know she’s the child of my dreams.

She’s down right beautiful, she’s my little girl,
she’s down right beautiful, and she fills my world,
with lots of love, lots of smiles, and she’s happy can’t you see.
Yeah she’s down right beautiful to me.

Now she’s growing up oh so fast I can scarce believe my eyes,
it seems like only yesterday when I’d hear her cry,
now I know the day will come when she’ll go away,
till then she’s down right beautiful to stay.

She’s down right beautiful, she’s my little girl,
she’s down right beautiful, and she fills my world,
with lots of love, lots of smiles, and she’s happy can’t you see.
Yeah she’s down right beautiful to me.

She fills my world with lots of smiles and she’s happy can’t you see.
Yeah she’s down right beautiful to me.

Saturday, March 28, 2009

All Clear!

I hate warnings! LOL We're out of our basement and the sun is shining!

A Tornado Warning

We are sitting in our basement and the news is saying a tornado is heading straight for us. Not good! Keep us in your prayers!

Mall Directory

We went to the mall today after our fingerprint appointment, and we were looking for a store on the directory board. I was letting Kameron figure out where we needed to go. He located the store on the map, figured out it was on the second level, and then...

Me: OK we need to figure out where we are now, so we know which way to go.
(I looked for the "you are here" sign, but couldn't find one)

Me: Well, look, (pointing to a spot on the board) here are the elevators so let's head there.

Kameron: No Mom, that's not the elevators, that's the Mall directory.

Me: *sigh*

Question of the Day #27

What do you think is the greatest invention of all time?

Comfort

Keeghan LOVES plastic kiddie forks. He goes into our kitchen at least twice a day and takes them ALL out of the drawer and carries them around. (Don't worry, they're not sharp, they're made for babies). Yesterday, he missed his nap, so I walked into the dining room about 6:00 to find him like this:
All his comfort items gathered safely in his arms.

Friday, March 27, 2009

Prayer requests

Hey all you prayer warriors out there, I have a few places to send you tonight to pray.

First, please go visit Savannah Swandal. She is one of our Vandy kids and has relapsed for the 3rd time with Alveolar Rhabdomyosarcoma. She has another long fight ahead of her and can definitely use your prayers!!! Pop over to her page and leave a word of encouragement! I know her parents, Robin and Bruce will appreciate it!






If you have been around for awhile and have followed Kennedy's carepage, you may remember me talking about the Newbold Family. Their daughter Chloe who had Down syndrome, passed away from Leukemia while Kennedy was on treatment. Since then Rick and Kristy have gone on to adopt 2 children, John Paul and Dasha, with Down syndrome from the Ukraine. When they got home they took the children to be checked out by a doctor and Dasha is showing some signs that she may have the same type of Leukemia that Chloe did. I know this has to be so hard on Rick and Kristy. Please go visit and let them know you're praying. It's a hard, scary road.


Please keep all the families adopting right now in your prayers. We are all in various stages... some are SO close to being home, some are getting ready to travel soon, some are just starting out, and some, like us, are trying to fundraise, and finish up paperwork and cut through red tape as quickly as possible. No matter WHERE we are on our journey, we are always so grateful for your support and prayers.

Thank you for praying for all these very special families.

Crazy girl

Kennedy was watching Spongebob on Kassidy's iPod and she was being so silly. I was going to tell her JUST that... it didn't work out though...

Me: Hey Kennedy...

Kenn: What?

Me: Guess What?

Kenn: Ummm... Jesus loves me?

Me: Uhhhh... yes, yes He does.

(How was I supposed to call her silly after THAT?!)

Whew!

Kennedy's meeting is over... Today was really just an eligibility meeting to make sure she's eligible for Special Ed services (which of course she is) and we talked about placement etc for Kindergarten.

She is going to be fully included in a typical kindergarten class :o). She will be pulled out twice a week for Speech therapy and once a week for Occupational therapy. We do have a few things to check into... I need to talk to her spine surgeon about P.E. class and what she can and cannot do. For example, I know she cannot do somersaults and stuff like that. If he wants her really restricted, she may go into PE with the Special Ed class, which is actually fine with me. I'm really worried about her injuring her neck. We'll see what her doctor says though and we can decide that in the Fall.

There's also the issue of her being able to carry her tray in the lunch room. I'm not too sure she can do that, she's so tiny. At home she will carry her empty plate and cup to the sink after dinner, but I wouldn't let her carry a full plate (heck, I just started letting Kassidy do that a year ago! haha) They had a great idea of us coming to eat lunch at school with Kass or Kam and just let Kennedy try it and see how it goes. She'll probably surprise me and do just fine! Wouldn't be the first time she has proved me wrong! ;)

The meeting went really well. I think she has a good team behind her to help her have a successful year. We'll meet in the Fall to write her goals for the year... and I really think that will be a fun meeting because they're not limiting her. I'm SO excited about Kindergarten!!! (Oh and I only teared up a couple times, but they were happy, proud tears, so I guess that's ok!) :o)

Thanks for all your words of encouragement, support and prayers!

IEP Meeting


Today is Kennedy's IEP meeting for Kindergarten. If you could say a little prayer that it goes well AND that I don't cry... much... I would appreciate it!! I'll update again when I get home!

Thursday, March 26, 2009

Q&A #68

I just need to throw this out there I was born and raised in Tennessee.. My husband was not.. He was raised in Kansas he calls a creek (water) like a "crick" like a crick in your neck it drives me crazy... so it isn't always southerner's that can't speak correctly. I say soda he says pop.. I could go on and on and on. On a positive note you do a great job on your girls hair.
LOL I have heard of people saying "crick" too! In Michigan, where my mom was born and raised it was pop as well... and I know some people in the South call everything "coke" like, "What kind of coke do you want?" It's so funny to hear the different ways everyone says things! I should do a poll! haha

Ah Motrin. What a good military spouse you are!
LOL Oh yes! Motrin and water... the cure for EVERYTHING! hahaha

Oh how sweet! What a darling little poppet she is! Just go on, move to London and be our next door neighbours! (ironically, their house is now for sale!).
We'll pack up and be right there! Do you think Frank can join the Military there?! ;o)

Hello, I may be too late to help the nursing student - I just saw your blog....I have two children with Down Syndrome, one biological, one adopted. I'd be happy to help.
I'm sure she would appreciate any input you have! Feel free to post it here or on the original post and I'll make sure she sees it! :)

so cool but remind me when you are up again that you can do this so you can do it to Megan's hair.
Absolutely! LOL

Poor guy! I'm tempted to make a really bad joke about "melting down" and "cheese melting" but I wouldn't do that, now would I...?
LOL I don't know, would you?

No, note to self...never let Keeghan SEE you taking the cheese off his sandwich. So how do you know he's lactose intolerant? I'm wondering about James and dairy....
Stopping by to let you know I'm praying!

LOL Exactly! He started getting these horrible stomachaches. He would be just fine and then out of nowhere he'd double over in pain crying. I finally took him into his ped and she said she was sure it was dairy doing it and to take him off dairy and that would tell us. Sure enough, after 3 or 4 days with no dairy, the stomachaches stopped! She said we could try weaning him back on after a few months, but we're not to that point yet.

And of course you had your camera ready to capture the moment!
But of course! LOL I keep it handy at all times!

So what finally calmed him down?
I offered him a jello cup, which might possibly be his most favorite food EVER! He ate that and then happily ate his sandwich. Guess he forgot about the cheese! LOL

Hey, I didn't know Keeghan was lactose intolerant! Brandon is too (and so am I!). We use a LOT of Lactaid pills (except I buy the generic from Walmart). I crush them up and give and put them in Brandon's milk and he can then drink it fine. If he is eating cheese or ice cream, I've been known to crush them up in apple juice too. They are tasteless and then he can eat whatever dairy foods he has. So, no more melting down. It works well for us!
YAY! I am SO going to try that!

I am as well, I use the lactaid stuff, it come in a green and white box at walmart and I just take one every day and I never have to worry about it again! it makes life so much easier. I think i seen some for kids, you should look into it!
That is SO good to know! I have heard of lactaid but thought it was just a lactose free milk. Keeghan would be SO excited to be able to eat cheese again!

i love his shirt! :0)
Thanks, it has a picture of a 12 inch ruler on it. Get it? I rule. Ahhh I love the corniness! haha

Adorable picture! Does Keeghan not just have the most AMAZING eyes?!! I could get lost in those eyes! Oh they could bring trouble if he learns how to use them! lol
Oh trust me, he's already figured it out! LOL

More on AAI from a dad who's been there. If you have a child with Ds, please read!
Rhiannon, my prayers are with you little angel as you walk with God our Father in Heaven. My prayers also to your family. LORD I ASK YOU TO SHOW YOUR GRACE AT THIS TIME AS YOU PROMISED US AS WE KEEP OUR FAITH IN YOU AS YOU COMFORT THIS FAMILY THANK YOU JESUS.
I also have a child with DS, he was 3 years old when he had his x-rays. They told us his x-rays were normal and that he did not have AAI. 3 years later he was dying from AAI. His x-rays from 3 years earlier were not normal but abnormal; it showed he had spinal cord compression. Now 3 years later his C1 is broken into multiple pieces and he has a spinal cord injury. Over 60% of his spinal cord was compromised. He has had 3 surgeries in 4 years because it was so bad. His gap was about 14 mm also but he is doing well and can walk but with some struggles. He has 3 rods, 6 screws, and 2 hooks in his neck. He has had a halo twice with 8 pins screwed into his skull for 5 months. Not pretty. So I ask when the time comes, try get an MRI OR A CT SCAN, because if you sit just right at the time of x-ray your child's spine might be in its normal position and after the x-ray it can slip out of its normal position and the x-ray will miss it. You will never know until it's too late, but MRI or CT SCAN WILL ALWAYS SHOW IT. I wish you all well and God Bless all of you.

This N That

Well, Kass and Kam both have fevers again... not too high, but I have a feeling they're on the way up. We'll see. Kennedy and Keeghan are still hanging in there.

I've spent the last hour or so updating our blogroll. There are a TON of new blogs on there. As always, if I missed you, it was probably just an oversight, so let me know. If you're adopting, you should be on Kellsey's blogroll. Again, let me know if I made a mistake. It's bound to happen sometime! ;o)

I really took this picture because of the scratch on Keeghan's face... no clue WHERE he got it, he just came out of his room and there it was... never shed a tear or anything. Poor kid has had his share of bumps and bruises in the last few days. A couple nights ago he was wrestling with Kassidy and bumped his mouth on her shoulder and bit his tongue which bled and bled... then he got this scratch yesterday, he has one on his arm too... then last night he was up in his crib not going to sleep, when we heard a loud scream. I rushed up there to find blood pouring from his mouth again! Not really sure what he did, but he had a cut in his lip, probably from his tooth. Such is the life of a boy, I guess! Anyway, beyond the scratch, isn't that a cute picture? Kennedy is such a good big sister to him! When they're not fighting over baby dolls, that is.

Oh, and for all you facebook people out there, you can now follow my blog on facebook. There's a widget on the left side of my blog where you can sign up, or just click on that link... I think. I haven't figure it all out yet. All I know is that it will only let me invite 20 people per day. It's going to take me forever! LOL

OK my mindless babble for the day is done. Hope you enjoyed it! LOL

Huge hair!

You know what happens when you undo this hairdo?


You get this:



I tried to get her to let me tame it down and put a headband in, but she wouldn't let me! haha

Home again, Home again...

Jiggity Jig. We are all home again laying around. I couldn't get Kam's temp below 101 last night even with rotating Tylenol and Motrin. When I went to check on him before I went to bed though, he was drenched in sweat! YAY! This morning he is a cool 97.8 degrees! Kassidy ran a low grade fever last night. It wasn't bad, but too high to go to school this morning. SO we all slept in and are laying low today praying that the little ones don't catch this bug!

Tomorrow it will be back to school for Kass, Kam and Kenn! Right? Right!

Wednesday, March 25, 2009

Cheese

Tonight I ran some Motrin over to my friend Angela and on the way home I stopped by Jersey Mike's for sub sandwiches. I ordered a ham sandwich for Keeghan, and I told them no cheese because he's lactose intolerant. When I got home, I discovered they put cheese on his sandwich, so I took it off and ate it. Apparently that was the wrong thing to do. He then melted down like this:

Note to self? Never steal Keeghan's cheese.

GRR Virus!

Kameron's temp was over 105 when we got to the doctor. She was sure he had the flu... he had ALL the symptoms, including the eyes hurting! I never knew that was a flu symptom! She said he just looked fluish. (Is that a word?) Anyway, the did a flu test on him and it was negative. She ordered a strep test too, just in case, and that was negative too. SO she diagnosed him with a flu-like virus. I've been rotating the Tylenol and Motrin every 3 hours, but when they took his temp he was still 45 minutes away from his next dose and it was still over 105. He has a history of febrile seizures... he hasn't had one in YEARS but he hasn't had a temp this high in years either so she said to just keep an eye on him and make sure to stay on top of the meds and to do a luke warm bath if necessary. Poor kid is freezing, but I told him if his temp doesn't go down soon we'd have to do it. Doctor said to bring him back on Saturday is he's still running a fever or before hand if he gets worse.

They tested Kassidy for strep as well which came back negative, and with the lack of fever, they are thinking it may be allergies causing her symptoms. She said we could use Claritan and see if that helps her. She can go back to school tomorrow.

So right now everyone's quiet. Kam is laying on the futon in the dining room (which I really need to rename since we don't dine in there) and Kass is laying on the floor in there with her pillow and blankets. They are watching cartoons. Kennedy is on the couch here in the living room having "rest time" and Keeghan's asleep in his crib. Maybe I should take a nap too?! hahaha

Please pray that Kameron feels better soon! Poor kid!

Is it Spring yet?

I am SO ready for Winter... and all the illnesses it brings with it... to GO AWAY! Kameron complained of a headache after school yesterday. We took Kennedy to therapy and by the time we left he looked really pale. When we got home I took his temp and it was over 101. SO I gave him Motrin and it went back to normal. He said his headache went away so I thought maybe it was a fluke.

He woke up at 3am crying saying that his head hurt again. He came over to my bed and he was burning up! He was over 103. I made him a bed on my floor, gave him more Motrin and he slept until 9 or so this morning. He's my early riser so this was REALLY sleeping in for him.

When he woke up his temp was still over 101 so more Motrin and now it's not coming down. I gave him a dose of Tylenol too but right at the moment he's over 104 and he still has over an hour before he can have more medication. The only thing he's complaining about is a headache and his eyes hurting.

Kassidy is home today too with a sore throat... no fever, but I suspect Kam may have strep... he never has a sore throat with strep... so I figured I may as well get Kassidy tested too. We go see the doctor at 1:20. So far Kenn and Keeghan are feeling ok and running circles around their siblings.

Spring can come ANY time, I'm waiting!

Tuesday, March 24, 2009

Prayer is as natural an expression of faith as breathing is of life

Kennedy was having a tea party with one of her baby dolls the other day, when I heard her talking. I looked over to see this sweet picture and hear the words "Tank tu for our food AMEN!"

The Lord protects those of childlike faith; I was facing death, and he saved me.

Q&A #67

AHHHHEM! THERE IS NOTHING WRONG WITH A NICE SWEET SOUTHERN ACCENT! hahha
But not tooo county then you just sound uneducated! I PROUDLY have a sweet kind gentle innocent southern accent?
{did that sound believable?}
ps: yes I say picture taken not made...but I do say ya'll...and pecan is Pee-can...and pin and pen sound JUST alike..hahhah!

LOL you're right! Nothing wrong with your accent at all! I love it actually! I'm VERY glad you say "picture taken" though! LOL

Renee, this is not the first time you've brought me close to tears with your beautiful writing. Have you ever considered writing a book about your family's experiences? Or a book about anything for that matter? You truly are talented.
I have... I might someday. Or maybe I'll just print out my blog and publish that! haha Seriously, before my computer crashed I had a fiction book in the works... dealing with Ds of course... maybe one day I'll try again.

I want to share something with you that happened in my family recently but is kinda along the same lines, my cousin who's 8 and has cerebral palsy recently sat up unaided for the first time, and his sister was excitedly telling her teacher about this. Her teacher clearly didn't really understand, but my cousin just said,
"This doesn't seem like a big deal to you, because you take sitting up for granted, but for MY brother, this is like climbing mount everest bare foot!" She's right too, don't you think?

Absolutely!!! I love it when siblings take pride in their siblings accomplishments! Thank you for sharing that!

Hey your note about them saying having their picture made reminded me. Do they say things like on tomorrow instead of just tomorrow? Thats something they do here that drives me nuts. Oh and and instead of asking where someone lives, they say where do you stay at. AHHHH I could go on and on.
I've never heard anyone say "on tomorrow". That would drive me nuts too. I have heard someone say "where do you stay at" but not often. We're in a pretty diverse town with the Military surrounding us. There are people from everywhere here!

What kind of surgery is Frank having? I hope it goes okay and he recovers quickly.
Well, since he posted it all over his facebook (LOL), he had a Vasectomy. He's doing well though... he's drugged, but doing well. :)

Speaking of going for a surgery (and I hope you don't!) but whatever became of the knot in your neck? Did you ever go to the dr for that?
Well, it was a lump in my throat, and it disappeared after a couple weeks. It hasn't been back, thank goodness!

How in the world did you find time to do all of this? Is there an award for a tired grams who just doesn't have time to blog...partly because she's so busy signing everyone else's guestbooks?
LOL I've been working on that post for a few weeks now. It took forever! I should totally make a grandma award... but my mom would have to get it first. :)

My migraines though were later linked to allergies.....have you ever had allergy testing done?
I haven't. I do know that nutrasweet brings on migraines so I stay away from the stuff like the plague. I actually have no idea what brought on this last one. It's been totally different that my previous migraines though. It's really strange.

I've been having problems with migraines myself and was thinking it might be time to see my dr. What has yours recommended?
Nothing yet, I need to make an appointment. I ended up in urgent care because I really didn't think it was a migraine I was having and the doctor there told me I need to be seen and get on something. SO as soon as I can figure out which doctor I'm supposed to see, I will go in. I just thought it would be good to go in with some recommendations first.


Questions about Kassidy's hair
Alright. I don't get it. You do all this elaborate stuff with her hair but you can't do a french braid? What's up with that? Come on up here to St. Louis and I'll teach you my tricks and you can teach me yours! ;P lol
I KNOW! What's wrong with me?! I get so frustrated every time I try. It just won't work! LOL

Wow, how do you do that? My kids run away from me screaming if I approach them with a comb!
I put on a good movie and Kass is pretty patient with me. I have to bribe Kennedy with cartoons and goldfish! LOL (The crackers... not the animal)

Who know's, maybe if the trip that Misti and I have been brainstorming about for this summer actually happens and we can stop by to see you, then I would love to teach you! If nothing else, I'd love to do one, or two side by side on Kassidy!
That would be AWESOME! We are SO excited to see you guys and praying hard it works out! You know our door is always open!

Love it...you have such talent...how long did it take?
Umm maybe 30 minutes? Maybe less. It really wasn't hard at all.

Have you ever tried to fishbone? It is super simple and gives the braid a nice twist :)
I haven't... I was just looking at a tutorial on it a few days ago though, I will have to try it sometime.

And man she's got some thick hair! Kaia's hair is so thin. ONE of Kassie's braids is thicker than ALL of Kaia's hair put into one braid
I know! Her hair is WAY thicker than Kennedy's ever was or will be. I love it because mine is/was always SO thin!


i dont know much about DS. can she (Kennedy) not be a mom?
WELL... girls with Down syndrome, in most cases, are able to get pregnant. However, boys with Down syndrome, in most cases, are not able to reproduce. I believe there are 2 proven cases of a man with Down syndrome fathering a child. Usually when couples with Down syndrome get married, they make the choice NOT to have children because it's such a big responsibility. And of course, there is the fact that most men with Ds can't reproduce anyway. Kennedy also has the fact that she's been through chemo working against her. Many times it eliminates the ability to have children. I think it's one of the hardest things for a parent with a child with Down syndrome to come to grips with... that their child will never get to be a mom or dad. I'm glad that Kennedy has lots of siblings who hopefully WILL want families of their own so she can spoil her nieces and nephews!

Which makes me wonder...would you take away Kam's PDD-NOS? I wish I could leave some of Laurie's quirkiness with the PDD-NOS, but take away those annoying tantrums, obsessiveness, and rigidity!!
Ahhhh Like you, I love Kameron's quirkiness. I love the way his mind works sometimes and hearing his stories and I know that without PDD-NOS, Kameron wouldn't be Kameron. HOWEVER, some of his issues are exhausting... like getting the kid to EAT, for example, and I hate it that people think he's "bad" or a brat, when I know if they would just take the time to get to know him, maybe they would understand him a little better. For ME, Down syndrome is easier to handle than Autism, I find myself frustrated with Kam a lot. Like you, if there were a way I could pick and choose things to take away from Kam's autism, I'd jump all over it, but only if it wouldn't change the things I love SO much about him. I still have hope that one day he'll eat an entire "normal" meal.

This last comment is for all of you out there! :)
Hooray to all of you Super Moms out there! (I really do mean this and I DO NOT mean it condescendingly because you are SUPER MOMS!) Have any of you thought about giving your names to hospitals, doctors, or NICU so that they could call you “if” a new parent wanted to talk? You guys have walked this road, have a super head on your shoulders, have some wonderful thoughts, ideas, and stories to share, and have some beautiful children to share with these terrified new parents. It is just a thought because a support system and a firm foundation is the best thing anyone could give these parents, as all of you well know. All of you are up to date on the latest research and you have the cutest examples of what these children CAN DO and BECOME! I may be wrong, but wouldn’t you have rather had someone told or shown you than read about it in a pamphlet? Wouldn’t you have rather heard about it from someone who had already walked a mile or more in the shoes you had just stepped into; especially with the enthusiasm that I read in the postings on Renee’s blog from all of you? All of you show an amazing range of strength, love, and courage and it would be great if you could share it with others who are afraid of the unknown as you once were so that one day they could share it with someone else so that the chain of strength, love, and courage grows stronger with each link that is added. You have all had some great ideas, thoughts, and encouraging words this week. Thank you for sharing your hearts, minds, and souls.

More fun with hair!!

I've been playing with Kassidy's hair again. I STILL can't figure out how to do a french braid. I've tried and tried and I just can't make it look right. But I'm not bitter. Much. Still, I thought this turned out cute! See the hearts on top?

Front

Back

Top

Side

Monday, March 23, 2009

Sweet Girl

She is going to be the most amazing aunt someday!

Monday Moment for Down Syndrome - Mother of a Special Child

Over the last 4 years I have collected MANY poems and stories about Down syndrome and special needs in general. Since a lot of my readers have kids with special needs, I thought I would post one poem or story every Monday. Chances are you'll find one you've never heard along the way!

Mother of A "Special" Child
Author Unknown


When I was young, I'd often say, I'd like to be a mom someday

While playing with my baby doll, I thought that jobs not hard at all

I'd have a baby, maybe two, a girl in pink...a boy in blue

Well I grew up and sure enough,

The baby that was sent to me, was born with disabilities

At first I'm frightened through and through, there's much to learn to care for you

This wasn't in my plans at all, when I was young and played with dolls

Your mind and body were so weak, you might not ever walk or speak

So much special care required, I'm often scared and often tired

As months and years go slowly by, I smile a lot but sometimes cry

To watch you grow and not complain, though you endure your share of pain

Oh, how I'd hold you and I'd pray, that you'd be healed and whole someday

But I knew that was not to be, not physically or mentally

And so I taught you best I could, your progress wasn't very good

But then one day I realized, a I gazed into your loving eyes

That I had learned so much from you, determination...courage too

A love so unconditional, it floods my soul and always will

I'm proud to say I gave you birth, for you're an angel here on earth.

Sunday, March 22, 2009

Kennedy, Keeghan and American Idol

We are catching up on American Idol. Kennedy and Keeghan decided to dance along. Silly kids. The occasional green streak across the screen would be Kameron running past! LOL He couldn't stand not being in the shot! I'll have to do a video focused ALL on him later!

Migraine Blockers

Are any of you out there on Migraine blockers? I've been told it's time to get on one. I tried Imitrex a few years ago and it was awful! I need something that's not going to make my body freak out. If you've had experience with this, what have you tried? What has worked? Not worked? Any with horrible side effects? Any input is much appreciated! Thanks!

Saturday, March 21, 2009

Awards and Memes again!

It's that time again! Awards and Memes!!!

I was presented with these 2 awards by Maureen and Melissa.
         

Thanks girls!

The rules say I'm supposed to pass these onto 10 other people, so I choose for the Sisterhood award:
1. Life is Like a Box of Chocolates
2. Able's Antics
3. Blessed and Lucky are We
4. Blessed by God's Grace
5. Dream Big
6. Embracing Life as a Household 6
7. Among the Lions
8. Jacinda's Blog
9. My Army Life Too
10. My Princes and Princess

and for the best friends award:
1. Three Little Lady Bugs
2. Kwisteena's Kwaziness
3. Bringing Home Boys
4. The Shupp Family
5. Down South Musings
6. Expecting Evangeline
7. Faulkner Family
8. Llama Queens Don't Do Homework
9. Megan's Got 47
10. The Poppies Blog




I rec'd this award from Courtney, Shylo and Casey. Thanks girls!

The rules for this are below:
"These blogs are exceedingly charming. These kind bloggers aim to find friends and be friends. They are not interested in self-aggrandizement. Our hope is that when the ribbons of these prizes are cut, even more friendships will be propagated. Please give more attention to these writers. Deliver this award to eight bloggers who must choose eight more and include this cleverly- written text into the body of their award."

1. Adelynn's Journey
2. Ella Grace with the Pretty Face
3. Mixed Blessings
4. Barnes Bunch
5. Neapolitan Ice Cream
6. Reed Rugrats
7. Reflections
8. The Albrecht Squad




I was also tagged by Casey for the purse meme. Here are the rules:

1. Post a picture of the bag/purse/handbag/pocketbook {whatever you call it!} that you are carrying! Now, don't you even think about going back there to your closet and getting that cute little clutch that you carried before you had children or the last time you went out ;-) I want to see the purse that you carried today!

2. Tell us how much it cost! Oh my, I know what you are thinking - a Southern Belle neva discusses matters of money, darlin'. Well, yes, but today we are gonna break that rule and tell! Yes, tell how much it cost. We won't judge! This is for entertainment purposes only! And if there is a story that goes along with this purse, tell it!!

3. Tag some other girls. It will be fun to see what everybody else posts :-)


So here's the thing, I don't carry a purse! LOL (I know, what's wrong with me?!) I have this small black case which holds my iPod touch, an extra battery for my phone, and my debit cards and military ID and driver's license. That's it. Exciting huh?! LOL

I now tag:
1. Christal's World
2. Final Score: Boys 3 and Girls 2
3. Out-numbered By Kids
4. Ralph and Crew
5. This Mama's Hood




Christal tagged me for the picture Meme! Thanks Christal!

Here are the rules:
1. Go to where you store your digital photos and open the 4th folder.
2. Post the 4th picture in that folder.
3. Explain the picture.
4. Tag 4 people.


My handsome big guy! He's awesome!
No real explanation necessary, right? LOL


I now tag:
1. The Ever-Changing Life of the Military Wife
2. Loving You Plus Two
3. Pardon My Chaos
4. The Horton's - One Day at a Time




Brandi presented me with the Life is Grand award!

Thanks Brandi!!

The rules are to give 5 reasons why I think life is grand and then tag 5 more people.

Life is grand because:
1. Spring is here!
2. My hubby is home!
3. My kids rock!
4. My mom is awesome!
5. Kellsey WILL be home soon!

I tag:
1. Opposite Kids
2. I Remember When There Were No Questions
3. Journey to a Promise
4. Quinn's Crusaders
5. The A-Team Adventures




I received the Proximity award from Jacki. Thanks Jacki!



The rules are:
Proximidade is described as:'This blog invests and believes in PROXIMITY - nearness in space, time and relationships. These blogs are exceedingly charming. These kind bloggers aim to find and be friends. They are not interested in prizes for self-aggrandizement! Our hope is that when the ribbons of these prizes are cut, even more friendships are propagated. Please give more attention to these writers!'This blog award should be sent to your favorite eight bloggers and they, in turn should forward to eight of their favorites.

I tag:
1. Ten Squares, Three Squiggles
2. Charlie's Up To
3. Crystal said what???
4. The Ham Fam
5. Life as a Busy Mom of 3
6. Life With Bubba Chicky and Nika
7. Proud Mommy of Four
8. She is our Angel






Monica, Brigitte, Ecki, Melissa and Jessica presented me with this Premio Dardos Blog award. Thanks ladies!


“Premio Dardos means ‘prize darts’ in Italian." This award acknowledges the values that every blogger shows in his or her effort to transmit cultural, ethical, literary, and personal values every day.

Here are the rules for this award:
Step 1: Respond and rework -- answer the questions on your own blog, replace one question that you dislike with a question of your own invention, add one more question of your own.

Step 2: Tag - eight other bloggers to do the same.

1) What are you wearing right now? T-shirt and capris

2) What is your biggest fear? Relapse.

3) Do you nap a lot? When I can

4) Who is the last person you hugged? Kassidy

5) What websites do you visit when you go online? Too many to count

6) What was the last item you bought? Pizza for dinner

7) If you could go anywhere in the world, where would you go? To Kellsey's country to bring her home.

8) If you could go to the Oscars, who would you want to sit next to? Reese Witherspoon

9) Has a celebrity's hair cut ever influenced your own hairstyle? Not really.

10) If your house was on fire, what one item would you grab? My CD case full of pictures.

11) What was the last movie you watched? Been so long I can't remember!

12) What is the luckiest thing that ever happened to you? Kassidy, Kameron, Kennedy & Keeghan

13) If you had a whole day to yourself with no work, commitments or interruptions what would you do? Sleep. Blog. Read.

14) Is there a major goal you have that you haven't yet achieved? YES! Bringing my daughter home!

15) Where did you meet your spouse? College

17) What States and Countries have you visited as an adult? Oh gosh, too many to count for states. For countries, just Mexico.

18) What do you do to relieve stress? Cry. Sleep. Eat. Blog.


I now tag:
1. Karli's Kingdom
2. The Fowler Family
3. Garden of Eagan
4. Izzy N Emmy
5. Life as Snooks
6. Mama on the Edge
7. Mama Monkmee
8. ReJenerations




Lisa and Maureen presented me with the Lemons to Lemonade Award!! Thanks Ladies!



Here are the rules for the award:
1) Put the logo on your blog or post.
2) Nominate at least 10 blogs that show great attitude or gratitude.
3) Link to your nominees within your post.
4) Let the nominees know that they have received this award by commenting on their blog.
5) Share the love and link to the person from who you received your award.

I nominate:
1. Monkey Musings
2. Living a Van Nice Life
3. A Hapa Girl and her Hapa Family
4. A Joyful Life
5. Butterflies and Rainbows
6. Elliot's Expeditions
7. Finnian's Journey
8. Jaxon's Fight
9. Riley's Journey
10. Praying for Parker




Jacki sent the TLC award my way! Thanks Jacki!



I now pass this to:
1. The Fabulous Fields
2. Horton Happenings
3. Larkin's Place
4. Masto Mama
5. One more, more than one




Brandi tagged me to tell you all 6 weird things about myself and then tag 6 people. SO here are some:

1. I hate raisins, but LOVE grapes.
2. I don't like blueberries unless they're in pancakes.
3. I hate cheesecake but love cream cheese on bagels.
4. I pretty much hate all dried fruit, except dried cranberries.
5. When I start talking about food, I can't stop.
6. I'm suddenly craving fruit and a bagel with cream cheese. LOL

I tag:
1. Penny, the baby girl
2. Having Fun at Home with Master Dillon
3. Counting My Abundant Blessings
4. ASusong.com
5. Graced Again
6. Trying to Live Micah 6:8

World Down Syndrome Day!


Happy World Down Syndrome Day!
Today is March 21st. 3/21. Down syndrome is a 3rd copy of the 21st chromosome. Kinda cool, huh? Happy World Down Syndrome Day to all of you!!! :)

Things are going GREAT with Kellsey's Auction!!! We actually are getting more new items in! I may extend it for a few days!!!
You can find the new auction items here and here. Go check them out!

And now, a word about Special Olympics from Sarah Palin:

Friday, March 20, 2009

One more about Down syndrome

Erika left this is my comment section a few days ago and I thought, who better to answer this than all of you! Thanks Erika for your question, and for caring about the parents who are about to be dealt a blow. Those of us who've been there really appreciate it!

I am a NICU and delivery room nurse (for the baby). What do you think the best way for a nurse to approach a parent and let them know that we think something might be wrong (like DS or something else)? I never know how to say something like this or how to approach a parent who has just given birth. I feel like EVERY baby is such a miracle and a blessing (I have my Emily and expecting again in Sept)I want to be sensitive and caring and give them good information. We usually take babies to the NICU for "more testing" (ie the ped to look them over more etc). Do you think this is ok? Thanks for your help :)

Show and Tell

This morning I was on my way out to take Frank for his surgery when I remembered that Kennedy had show and tell at school today.

Me: Oh, I forgot, Kennedy needs a toy for show and tell...

Kameron: Kennedy has show and tell on Fridays like ME?!

Me: Yep.

Kameron: COOL! It's like we're related or something!!!

Me: Uh. Yeah... or something.

Question of the Day #26

Using one word, how would you describe your family?

Spring has Sprung!!!!


It's the first day of Spring and it's COLD. Dangit. Spring can... spring any day now! I'm SO over cold weather! Is it warm where you are? Let me live vicariously through you! :)

Keep Frank in your prayers this morning. He's going in for a minor surgery. Pray he's not in too much pain and that everything goes well!

Thursday, March 19, 2009

Would you take it away?

I feel like I have talked about Down syndrome A LOT in the last week, but the topics are out there right now... in my comment section, in blogland, on message boards, and so, I am addressing them. Why? Because this is my blog and I CAN! haha Actually because these are great topics with great points of view on both sides of the coin. As always, for those of you reading this, whether you have a child with special needs or not, feel free to chime in here. I would love to hear your thoughts.

Yesterday, Lisa talked about her son with Down syndrome and how she doesn't understand how parents would say that they wouldn't take Down syndrome away from their child if they had the opportunity. Her son, Finnian, is 8 months old. She's just starting out on this journey.

I remember, not long after Kennedy was born, I found a website that listed the physical characteristics of people with Down syndrome. Unlike the previous medically based sites though, this site was obviously written by a parent... one who had been on this Down syndrome journey much longer than I. The thing that stuck out to me was, in the list of characteristics it said, "beautiful almond shaped eyes". This made me cry. Hard. As a new mom with a child with Down syndrome, as a new mom who was terrified by this diagnosis, I couldn't understand how anyone would think ANY characteristic related to this syndrome was beautiful. I didn't get it.

Wendy replied to Lisa's post and said that she wouldn't change Kira. She also pointed out that she wished people would stop telling her she will eventually look at her daughter and not SEE Down syndrome. That she won't THINK Down syndrome every time she sees Kira. Right now she does. But she's ok with that. Chrystal made the point of how much easier her daughter's life would be without Down syndrome and all the challenges it entails. She said she tries not to think about the future for her little one... things like "School. Bad touches. Stranger Danger. Real friendships. Moving around as a military family..."

I think, when a child is born with Special Needs, any special need, most parents instantly fear for the future. Will they be able to take care of themselves? Drive? Live on their own? Become parents? Be teased in school? Will they be able to keep up with their peers? Will they be liked? Accepted? But really, these are things I think about with ALL my children. I know plenty of "adults" who can't take care of themselves. I have friends who have chosen NOT to get married, or become parents (and that's TOTALLY OK!). I know plenty of kids, typical kids, who are/were teased in school, I know plenty of kids who struggle to keep up with their peers... socially, physically, and academically. I worry about all my kids with issues like stranger danger, bad touches, real friendships, and yes even moving around as a Military family. Matthew 6:34 tells us not to worry about anything for tomorrow will worry about itself. Easier said than done, I know! I've been there. I AM there. Our human nature worries.

So now, I'm going to talk about Kennedy. We've been on this journey called Down syndrome a little longer than the families I mentioned above. This does not mean anything really, except that I've been living in the world of therapy, doctors, developmental delays, and worry a little longer than they have. I have had more time for Down syndrome to soak into every fiber of my being. So here's my take on Down syndrome, and more importantly, on my daughter.

Kennedy is amazing. She is strong willed. She is a fighter. She has endured more with a smile than I ever could. She is not afraid to tell you exactly what she thinks about things (even if we can't always understand her). She works HARD for every milestone she achieves. Yesterday, for the first time, she walked up the steps on our porch. She didn't hold my hand and she didn't put her hands to the ground to steady herself. There was no railing to hang on to. There are only 3 steps, and she took it slowly. When she got to the top she turned around, got a HUGE smile on her face and said, "MOMMY! I DID IT!" With tears in my eyes, I replied, "Yes, baby. You did it." She's almost 5. And while most parents would say "big deal", I know that it IS a BIG deal. It's HUGE, because she worked so hard for so long to be able to walk up those steps without assistance. Is it FAIR that she had to work so hard to do something that comes so easily to other kids at a much younger age? Nope. Not fair. But every milestone with Kennedy, no matter how delayed, has been a cause for celebration. Not one has been taken for granted. Every day with her is a gift.

Kennedy is 4 1/2. She walks and she talks and she goes to a typical pre-k where the other kids tower over her in height, but they love her. When she shows up to class they run to give her hugs and when she leaves, it's more hugs goodbye. And they rejoice in her accomplishments too. When I picked Kennedy up yesterday, one little girl came up to me and excitedly told me, "Kennedy kicked the ball with me on the playground and she did REALLY good!" They focus on what Kennedy CAN do, instead of what she can't. And slowly, I'm learning to do the same. Kennedy has a whole family full of her biggest fans; cheerleaders who keep her going, keep encouraging her, and the times when we get worn out, she turns around and encourages us. Kennedy has taught me how to love deeper than I had ever imagined. She's opened my eyes to worlds that I never realized existed. The world of Down syndrome, the world of childhood cancer, the world outside the United States where kids with special needs are treated horribly and basically thrown away at age 5...

SO if some scientist came up with a magic pill and said, "If you give this pill to your child, it would take away Down syndrome! It would take away the developmental delays! It would take away all your child's struggles and hardships!" Would you give it to your child? Would you?

Would I take Down syndrome away, if I could? At this point in my journey, I can honestly say no. Because Kennedy is Kennedy... Down syndrome and all. God wanted her to have that extra chromosome. I may never know why this side of Heaven, but it may have been just to teach our family some of His lessons. Will things in life be harder for her than for other kids her age? Yes. But we will be there, step by step to love her, guide her, help her (when she lets us) and cheer her on. That extra chromosome doesn't define her, but it's part of who she is; and to me, she is perfect. And I will spend the rest of my life making sure she believes that. I mean, really, just look at those beautiful almond shaped eyes.

Q&A #66

There is a new auction item on Kellsey's blog! Go check it out!

Hahahaha, and he (Keeghan) kept it on? Which one of his sisters did it?
That would be Kennedy! LOL He DID keep it on. In fact he got mad at me when I took it off so we could leave the house! LOL

Did he put that on himself? Or did the girls? Pierce LOVES to play dress-up with Kaia's princess dress-up trunk, even when Kaia isn't around! He LOVES LOVES LOVES the princess clothes and especially loves the princess shoes.
Kennedy did it to him that time... but I won't tell you that Keeghan has a Groovy Girl in his crib and I won't tell you that I found him curled up with said Groovy Girl in his sleep the other night. I won't tell you that he feeds Kennedy's baby dolls with bottles OR that he LOVES her Minnie Mouse shoes. I won't tell you that, because it's nothing to worry about... because he's one, right? Now if he's still doing this at 15, I'll tell you... and a therapist. LOL

You learn something new everyday... I always thought hand foot and mouth disease was something found in cattle....?!?
I think you're thinking of hoof & mouth disease.

So can you give him tylenol for the pain at least? That's very contagious isn't it? I hope no one else ends up with it. Yuck! And what's up with that ENT doctor. Sounds like the nurse or whoever took the message needs the doctor to check out her ears nose and throat to make sure there's nothing wrong with her hearing ;). So once you set her straight what did she say?
Yep he's been getting Tylenol regularly since Saturday, in an attempt to keep his fever down. It is contagious. I'm hoping none of the other kids get it too. LOL Well the nurse that called back almost laughed when she told me and I said, "WHAT?!" She said, "Well, I didn't figure anyone would call an ENT about a spinal fluid leak, but I just had to make sure!" (I decided not to mention that it took them over 2 hours to call me back! LOL)

Did you try giving him (Keeghan) some tylenol just in case he was in pain?
Yep, he's been on it pretty much every 4 hours since Saturday. Poor baby.

Also is it possible that he is associated his crib/bed/sleeping with the hospital and the cribs there? He may be a bit young to make the association but anything is possible.
Could be... he was only in the crib right before they took him back and then right after he woke up. The rest of the time he was in my lap. Never know though!

I am wearing tan. It is a shade of green, right?
Umm.... sure... if you say so! :)

Did you call the police? Even though there's no license plate you could describe the car, right? If you were in CA there's uninsured motorist which works great! In fact it works better than when the other person has insurance....at least that's what our experiences were....
Am so glad you're okay!!!!!!! And you know the Lord knows who did it. She's in His hands!

No, but I should have. I have "uninsured motorist" on my insurance policy but that doesn't apply to hit and runs unfortunately.

While I am sorry this happened to you. To give you some perspective on how lucky you were, go read about another accident on www.wxyz.com that occurred last night.
That is so sad :(. We are definitely thankful we are ok... our prayers go out to the families of the 4 teens.

Hope you're both recovering?
Oh yes, we're both fine! Just made me mad she took off, more than anything!

Oh NO!! Did she have a temporary plate?
She didn't. But I know where she bought her car! I could probably track her down if I really tried...

Mostly? Is that like mostly dead? (Hope you know the movie that came from!)
I have NO idea what movie that came from! LOL

Do your kids have accents since they have grown up where you are?
Not really. There are a few words they say that I can hear an accent with but not many. Now when Kass was in pre-k, her teacher had a really strong accent and I heard it more in Kassidy then. The only thing they DO do that is SOOOO southern is on picture day, they say they are going to have their picture "made". Californians say they are going to have their picture "taken". It sort of drives me nuts! LOL

Wednesday, March 18, 2009

Pretty in... Pink?

Keeghan spent the day like this yesterday... at least while we were home. Ahhh the joys of big sisters!

Hand, Foot & Mouth

Well, we have an answer for why Keeghan was up screaming all night. His doctor found ulcers in his mouth and said hand, foot & mouth disease was going around town right now... the bad news is there is nothing we can do for it. The good news is he's on the tale end of it so he should be feeling better in a couple days. At least it's nothing surgery related! :)

Speaking of surgery, I called the ENT clinic this morning just to let his doctor know what was going on and that I was taking him to the pediatrician. I told the nurse that he was up screaming all night and has a low grade fever still. Another nurse called back and said that she got a message saying that I called and told them he has a spinal fluid leak. WHAT?! LOL I'm not exactly sure HOW "screaming all night" was switched to "spinal fluid leak" but I'm thinking if he DID have a spinal fluid leak, I wouldn't call an ENT! LOL

Sleep.

Keeghan is still not feeling well. He's been a little whiny, a little feverish, nothing severe... he didn't seem to be in a lot of pain or anything, he was just blah. Until last night. He went to bed around 8:30 and immediately fell asleep. He was tired and slept hard... until 11:30 when he woke up and cried. And cried. And cried. Until 4:45 this morning.

He didn't want me to get him out of his bed, and when I finally did, so he wouldn't wake Kameron up, his crying escalated into a screaming bloody murder variety. It was really nice at 2am. So I put him back into his bed and he went back to just regular crying and moaning and groaning again. All night long. At 4:45 he finally fell asleep and slept until 7:15. YES! Then he woke up screaming again. *sigh*

My mom came over to hold him so I could get the kids ready for school, and of course he perked up not long after she got here. He seems to be ok right now unless I lay him down, then he freaks.

SO he has an appointment at 10:40 with the pediatrician and we shall see what they say. He's not pulling on his ears, but he's been gnawing on his hands like crazy. I don't think he's teething because the dentist said his 2 year molars were FAR from making an appearance. Who knows?

OK I'm off to shower so the doctor doesn't think I just rolled out of bed. Please just pray they can figure out what's causing him pain... or making him upset... or whatever. And pray we both get a nap this afternoon. I can't wait until he can tell me what's going on!

Tuesday, March 17, 2009

Thoughts of me...

I AM HEARING...
Kennedy and Keeghan playing with baby dolls

I AM THINKING...
I'm hungry.

I AM THANKFUL FOR...
My 4 beautiful children!

FROM THE KITCHEN...
Brownies are calling my name.

I AM WEARING...
My Team Charlie t-shirt

I AM CREATING...
This blog post.

I AM Wondering...
If Keeghan will take a nap in the car.

I AM HOPING...
That he will!

ONE OF MY FAVORITE THINGS...
are hugs from my kids.

A FEW PLANS FOR THE REST OF THE DAY...
Go pick up the kids, take Kennedy to therapy, and then go to a corned beef & cabbage dinner at my mom's.

A mom and a dad

Blogland has been a little depressing today... lots of new angels out there. I have to say though, that two of them really stuck out for me...

Sarah Kay Aberle passed away from melanoma on March 15th. She leaves behind a husband and five young children. Her youngest child is a mere 6 months old. She will only know her mother through pictures and stories.

Brian O'Neill passed away this morning from a brain tumor. He leaves behind a wife and two young boys.

While spending some time reading both of these stories, one thing jumped out at me. These families LOVE God. They are sad and they are grieving and they are numb, but they KNOW without a doubt that Sarah and Brian are in Heaven with their Lord. They are cancer free and pain free and though I have NO doubt they wanted to badly to stay here with their spouses and children, I can imagine them smiling down right now letting everyone know they are ok.

My heart aches for Sarah's husband Joshua and their children, Eliana, Samuel, Aaron, William and Madisen and for Brian's wife Angie and their boys Gavin and Grant. Please pray for these families as they grieve, as they learn how to carry on, and as they live their lives with the memory of Sarah and Brian and the wonderful, God-fearing people that they were. Cancer sucks.

Mom knows all?

Last night, Kameron was doing his homework and came down to ask for help. He was working on contractions and couldn't figure out what the contraction for "will not" was. Our conversation went a little like this:

Kam: I can't figure out what "will not" would be shortened to. It's not on my list of choices.

Me: It's "won't".

Kam: Won't??? How is it won't?

Me: Well I know it's a weird way to shorten it, but if you use it in a sentence, it's the same. For example you can say, "I will not eat my dinner" or "I won't eat my dinner", it means the same thing.

Kam: (after thinking for a minute) That doesn't make any sense. I'll just ask my teacher tomorrow.

*sigh* Gone are the days when mom knows everything.

Happy St. Patrick's Day!


So... are you wearing green today?! If not, come on over so I can pinch you! :)

Monday, March 16, 2009

Hit and run

Dear lady who hit my van,

I would just like to inform you that, despite saying you did NO damage to my van when you backed into me today, upon returning home I found that you did indeed scrape up the front. If you had bothered to stick around at the scene of the accident, I would have found it then and we could have worked something out. Instead you hopped back in your car and took off before I could say anything.

I don't understand why, after sitting at a red light for a few minutes, you would suddenly decided to throw your car in reverse and back up. I don't understand why you wouldn't look in your mirror before backing up to make sure no one was behind you. I don't understand why you wouldn't STOP when you heard a horn blaring and make sure that horn wasn't directed at you. I don't understand why you would ask if you hit me that hard and then claim you did no damage and then take off without making sure I was ok.

Conveniently, for you, you have no license plate and therefore I have no way to track you down. I tried to chase you, but I lost you. And so you'll get away with it. You may not be so lucky next time... so pay attention and watch where you're going.

Sincerely,
The woman you hit who is thankful that neither she nor her son were hurt

Monday Moment for Down Syndrome - World's Youngest Marathon Runner

OK So I hate it that this plays whether you want it to or not, so if you haven't seen the video of Paisley White qualifying for the marathon yet, go to this link and scroll down on the right side and you'll find the video. You won't want to miss it!

Sunday, March 15, 2009

Down syndrome - When did you find out?

Lillian asked me this question and I decided I would answer it now instead of waiting for my next Q&A. Thanks for the question, Lillian! :)

If you could turn back the hands of time, or if you were pregnant again, would you want to be aware of your child having DS in advance or finding out after delivery?

I have two answers for this: yes and no. And maybe. I guess that's 3 answers! haha
IF I could turn back the hands of time with Kennedy, I would have absolutely wanted to know she had Down syndrome before she was born. Make no mistake, Kennedy would still be here. However, I knew NOTHING about Down syndrome. I was completely and utterly devastated. At first I thought it meant she was going to die. Then I worried about what I had just done to our family, what I had burdened Kassidy and Kameron with. I freaked out about the future and I thought for SURE that if she DID live, she would be a vegetable. I just didn't KNOW.

If I would have known ahead of time I would have been able to research. I would have been able to read books and find websites like Downsyn.com. I would have found organizations like the Down Syndrome Association of Middle Tennessee. I would have seen that Down syndrome isn't a horrible thing. I would have seen that our lives wouldn't be as drastically altered as my mind first told me it would. I would have had a support system in place full of parents who had been there/done that. Instead, I was given information from the late 1970s which said that most "mongoloid children" were put into institutions.

Instead I was told by a nurse that I could still give her up for adoption... if I wanted to. Instead the first few weeks, and especially the first few days of Kennedy's life were filled with devastation and tears and fear and uncertainty and wondering why God did this to my baby. Instead, when I called friends and family to tell them of Kennedy's birth, I heard more "I'm sorry" than I did "congratulations". And now I get to carry that guilt and that bittersweet memory that comes back to me on her birthday every year. SO for the sake of educating myself, of preparing my friends and family, and getting connected with the right people ahead of time, yes, I wish with everything in me that I would have known.

I did have a subsequent pregnancy with Keeghan, and the question of whether or not we were going to check for Down syndrome came up several times. One family member even gasped and asked me, "What will you DO if THIS baby has Down syndrome TOO?!" Hmm. Kennedy was a little over 2 1/2 years old when I got pregnant with Keeghan. Getting pregnant was a thought out, conscious choice. Frank and I discussed at length whether we would be ok with having another child with Down syndrome. And the answer was yes, because really, Down syndrome alone is no big deal, and Kennedy is awesome! We would have been totally fine if our baby was born with Down syndrome. That was when we were sure we were ready to add to our family.

While we didn't care whether or not he had Down syndrome, we DID want to know about heart defects, which are common with Ds. We wanted to know because if he DID have a heart defect we wanted my prenatal care to be transferred to Vanderbilt instead of the Army hospital. Because of that, we decided to have a level 2 ultrasound. We refused any invasive testing (like an amnio) and we refused the AFP test, since it's wrong more often than it's right anyway. If Keeghan would have been born with Down syndrome, it probably wouldn't have phased us in the least.

NOW that all being said, I have heard the other side of the coin from parents who DID find out prenatally and wished they wouldn't have. Maybe it's a case of personality and what we, as parents, think we would be able to handle better; or maybe it's just a case of the grass being greener on the other side.

So all you parents out there with kids with Down syndrome, feel free to comment! Did you find out prenatally or at birth? Were you glad that's how you found out or would you have preferred it the opposite? Did you/will you do testing for subsequent pregnancies? I look forward to hearing your thoughts.

Question of the Day #25

What special talent do you wish you possessed?

Atlantoaxial Instability

For those of you who have been reading here throughout the last year, you probably know more about atlantoaxial (AAI) and atlanto-occipital (AOI) instability than you ever thought you would. Just in case you haven't been around, let me tell you a little about it.

About 10% of kids with Down syndrome are diagnosed with AAI. This is a separation between the C1 and C2 vertebrae in the neck. Around age 3 every child with Down syndrome in the U.S. undergoes C-spine x-rays to check for AAI.

Kennedy went for her x-rays at just over 3 1/2 years old. She was found to have AAI and the even more rare and more severe AOI. AOI is a separation between the skull and the C1 vertebrae. Where a typical person has a 1mm gap there, Kennedy's was 13mm. We were told that a car accident or even falling just the right way and injuring her neck could cause her to be paralyzed... or worse.

In July, Kennedy underwent spine fusion surgery to repair her AOI and AAI. I have to admit that even though they told me what could happen if it went untreated, I wondered. I saw it as a threat, but after battling cancer I just didn't see it as THAT big a threat. Of course we wanted it fixed, but I really questioned whether or not it was all being blown out of proportion. I had never heard of anyone dying from AAI. Cancer on the other hand, kills more and more kids every day. But dying from AAI?

On March 5th, just 17 days shy of her second birthday, Rhiannon Elizabeth Nisly, who had Down syndrome, passed away from what appeared to be a sudden illness. Yesterday, I read that the autopsy showed that it was not an illness after all, Rhiannon had AAI and she died from a spinal cord injury pertaining to that. Her parents had no clue. She was over a year away from the point where they would even have her checked for AAI. And it killed her. Just like that.
Rhiannon Elizabeth Nisly
March 22, 2007 - March 5, 2009


Since reading about her, my mind and heart have been consumed with sadness for Rhiannon's family and with "what ifs" for Kennedy. Every surgery that Kennedy had put her life at a huge risk. One wrong slip while intubating her and they could have snapped her spinal cord. One fall. One car accident. One wrong jerk of the neck. Wow. It's that serious. I get it.

For all of you out there that have little ones with Down syndrome, please please please please make sure your pediatrician orders c-spine x-rays for your child. They say the results are not accurate before age 3, but don't let too much time pass. AAI, like Leukemia, is one of the "ghosts of Down syndrome" - parents worry about it when it's hardly ever there... but sometimes those ghosts are real, and they need to be caught before it's too late.

It amazes me more and more every day how far Kennedy has come, and I just can't help but wonder what God has in store for her life... what her purpose is. I know she is going to do something so great, so wonderful. The Lord definitely has a reason for her to be here. And I'm so, so thankful.

Please keep the Nisly family in your prayers. I can't imagine what a devastating shock this has all been for them.

Saturday, March 14, 2009

How virtuous are you?

I always knew I was a little bit devilish! hahahahaha




You Are Mostly Virtuous



You are a good person, or at least as good as you can be.
You try to do the right thing, and you have ended up with many virtues.
While you are virtuous, you aren't a saint.
There's definitely a bit of devilishness deep in your heart!

Where You Are Virtuous
You have the virtue of Moderation. You don't do anything at excess, and you avoid extremes
You have the virtue of Resolution. You are determined to do what you should, no matter how difficult it is.
You have the virtue of Justice. You treat other people fairly, even when you don't feel like it.

Where You Are Not Virtuous
You lack the virtue of Cleanliness. You are quite messy... and maybe even a little dirty.
You lack the virtue of Order. Many aspects of your life are chaotic and a total mess.
You lack the virtue of Frugality. You tend to spend and waste money freely.

Virus

Well, the ped said he thinks Keeghan just has a virus... from the post-op standpoint he is ok... his throat looks good and his ears look good. He did a flu test since it's running rampant here right now but it came back negative so he said to just give him Tylenol (no Motrin for 2 weeks post-op) and hopefully he'll feel better soon. He's laying on the couch right now with his blankie and his paci and his bear. I think he'll be asleep soon. Hopefully this is a very short lived virus!

Poor little guy

Keeghan's not doing so well today. He woke up shivering and has a fever of 101.8. They told me to be SURE to call if his temp gets over 101. SO I tried to call his ENT. I got the dreaded recording of you are the next person in line. I didn't wait for an hour like last time. Because I'm not that dumb. I knew right away they had the wrong machine on and there would be no way to get through to anyone. Again. SO I called the ER to see if they could page the ENT on call. The ER couldn't help me. No way to get a hold of the ENT. Nice. I called his ped and they said they would see him, so we're leaving in about 20 minutes. In the meantime, he's sleeping on daddy. Poor little guy... he feels miserable. Please pray he doesn't have an infection somewhere.

Don't forget to shop!!!

Remember this post? This weekend you can shop at Gap, Old Navy and Banana Republic and get 30% off with this coupon. AND 5% of all proceeds raised goes back to the Leukemia Lymphoma Society.

Take some time tomorrow and go shopping!!!! Tell your husband it's for a good cause. ;)

Friday, March 13, 2009

Q&A #65

First, any questions about the auction, I am answering in the comment section of this post. Also, there is a new item up for bid here.

He's (Keeghan) finally getting the tubes soon, right? And this time they'll stay in ;)? He'll have to be completely ear infection clear to have it done, won't he? Or will they still do it even if he has an infection?
Yes, he got his last tubes a year ago but they fell out and the infections came right back. SO yesterday he got his second set of tubes plus he had his adenoids removed. I just talked to another mom who said that her son had that done and it worked GREAT! It was the end of ear infections for him, so here's praying! He DID have an ear infection today so they cleaned all the fluid out and he's on antibiotics... which he would have been anyway.

Wasn't your trip in the works when Kenn finished chemo? Didn't you have to put it on hold because of her neck?
Yes, we were originally supposed to go May 2008 when Frank came home for R&R but then she was diagnosed with the AOI/AAI in February 2008 and it was put on hold. At that point our plans were to go Christmas 2009, but once we committed to adopt we decided to go sooner. We didn't want to overwhelm Kellsey by bringing her home and taking her to Disney... she'd probably go into shock from sensory overload! LOL

Taylor has had sealants put on her back teeth twice and is slowly getting them crowned...she had one done a few weeks ago and one set to be done next week. She has no enamel in some spots, they say it is due to the high fevers she had as a baby and all the antibiotics (she used to get ear infections every month).
Yes, they said the same thing about Kassidy... she used to get ear infections and high fevers too when she was really little... so did Kameron for that matter, but they haven't said anything about sealants for him yet. Do the crowns hurt? It's not like a root canal or anything, right? If it really is fever and/or antibiotics that cause this problem, all 4 of the kids are going to need them!

Is the weak enamel linked to any of those candy wrappers you found hidden not too long ago ;) JK
LOL!!! That MUST be IT!!!!

Funny, we're off to the dentist tomorrow morning. I just saw something on TV the other day about these awful dentist offices that tie and strap kids down and won't let parents go back with them, they all but torture the poor kids, it's awful. I could never send my kid back by his or herself!!!! Crazy!
Oh my gosh! I saw that too!!! FREAKED me out!!!! I really really trust our dentist! She is wonderful!!! I know they would never do that to them. I felt SO bad for those poor kids :(.

I am taking it that they want to put a crown on one of Kass permament teeth? Because if not, it is a waste of money to crown a tooth that will be falling out anyways. Glad your kids have healthy teeth. Wish I knew that feeling. I have horrible teeth. :(
Hmmm yes, I would guess so... they said they would try to get her into adulthood before they crowned them... these are her back molars... will she lose those? I never really thought about the fact that they could be baby teeth! LOL I have horrible teeth too. I really need to go to the dentist... ugh.

Can I just bow down to your for handling 4 kids at the dentist???? OMG you are a superwoman!
LOL NAH! I just have fairly easy going kids. Kass and Kam actually LIKE going to the dentist. They have video games in the waiting room, TVs on the ceiling and they get new tooth brushes and a balloon when they leave! LOL They really make it fun for the kids there.

is it bad i've never taken the kiddos to the dentist? i can't believe i'm admitting it. but seriously why don't the offer dental insurance to all people. for cheap. that's the key. so if my kids teeth fall out at age five. blame me. :0)
Fortunately we have pretty good insurance for dental, I think. Cleanings are free and the sealants have run about $70.00 each time. I've never had to find out how much fillings cost or crowns or anything extensive though so I'm not sure about that... I think I've heard the coverage for braces is NOT good... and they've told me every time we have been in that Kass and Kam will definitely need those. Fun! NOT!

A loose tooth?!?!?! Aaack!
I know, right?! It makes me kind of sad!

Do you have lots of stock in mac in cheese?
No, but I should! I swear she would eat it 3 times a day if I let her! LOL She'd probably turn yellow! haha

Here's a good spider story - I was emptying the trash can from the room where the kids play and realized there was one of those Halloween spider rings at the bottom of the can. Grumbling because I hate reaching into the can even to get a piece of plastic, I started to grab for the ring when IT MOVED! It was a HUGE, real black spindly spider! AHHHHHHHHH! I almost touched it! I hate spiders.
Ohhhhhhh K that gave me heebee geebee's just thinking about it!

I thought he (Keeghan) was just getting tubes?
No, they decided since he's had tubes before that they would go ahead and do his adenoids this time too. Hopefully it will keep the ear infections away for good!

Where do you find all these crazy things? LOL
LOL Other blogs... just when I'm out roaming the internet. I can't help it, they're addicting! LOL

Praying that everything will go well. I hope it makes all those ear infections history! We have talked about having Caleb's tonsils and adenoids removed b/c he snores really bad and has mild sleep apnea. Let me know how it goes and maybe I will give into Caleb's. I have heard some say the recovery is horrible and others say it is a breeze...now I want your opinion :)
Tonsils suck. I won't lie. I don't know first hand, because I still have mine, but it was a hard recovery with Kass, Kam, Kenn and Frank! One thing I learned is to stay on top of the pain meds. Even if they're sleeping, even if they don't seem to be in pain, for the first couple days give them their meds on time. I regretted not waking Kam up for his once. I will say, after all was said and done, no more strep for Kass and Kam and it cured Kennedy's sleep apnea... or at least it went from severe to mild. As for Frank... he still snores. He's going in for another sleep study in a few weeks.

Have you ever considered a chiropractor to help with ear infections?! I work for two chiropractors, and they have helped many kids with ear problems.
You know, I've heard of that before... but I don't really understand how it all works.

Keeghan is younger than your other ones were when they had it done (I think?) so he could bounce right back. Here's hoping and praying!
Ummm Yes, he is. I was trying to remember how old Kennedy was, but she was a little older. She was 2 years 3 months. She ended up in the hospital for a week afterward because she refused to drink anything. Poor kid. Kass and Kam just had theirs out in 2007 so they were 7 & 5.

Glad he's doing okay. How are you doing Mama?
I'm doing ok! Since he doesn't seem to be hurting, I do fine. Hopefully this will be his last surgery EVER! Thanks for asking! :)

I love the capri story! I'm guessing they aren't capri's on Kennedy. :)
LOL no they were definitely long pants on her! LOL

Also you got a new picture of Kellsey???
YES!! :o) There are more right here! We were SO thrilled to get them!

Does Kenn still call macaroni and cheese, just "cheese"? LOL
LOL Nope she's progressed to marconi n cheese or just marconi now. She cracks me up!

And I have to say, where's your accent??? I thought for sure you'd have an accent.
LOL Well I was born and raised in California. We've been here for 5 years now and Frank says he can hear an accent in me on certain words now, so I guess it's slowly coming out.

He (Keeghan) is just the cutest! Did you ever find the doggy that he was looking for? How's he feeling today?
He's feeling good today! He had a little bit of a rough night, but not too bad. I ended up giving him one dose of pain meds to make him comfortable so he could sleep, but that is all he's needed. I am not sure what doggy he was looking for in the video! LOL There was nothing over there except a computer. He had that piece of paper with the doggy on it which he had been carrying around all day, but apparently that wasn't good enough anymore! haha

He's so cute. Thats a cool crib they had him in.
Ahhh yes, now that I know the trick to getting the sides up and down, they're ok but during Kennedy's first few hospitalizations I used to yell at those stupid cribs. hahaha

I have been trying to post this video for days..I can't figure out how to do it. Could I just link to you?? I know how to do that, lol!
Sure thing! LOL