Sunday, January 31, 2010

Opportunities to give!

All over the country, stations have been set up by an organization called Soles4Souls where people can drop off new or gently worn shoes to be delivered to the people in Haiti. When our church got wind of this ministry, they were excited to help any way they could and offered to be the Clarksville drop off spot for the organization.

Nationwide, more than 30,000 pairs of shoes have already been distributed throughout Haiti and more are being donated every day. Thank you Grace Community Church for always helping our community reach out to others!

Please check out the Soles4Souls website to find your local drop off point and see how you can get involved!!

Also, if you can please take a minute, go to Leaf Chronicle Reader's Choice Awards and vote for Grace Community Church for the best place to worship in Clarksville!! We are SO proud of you GCC!!!!

I just learned about another great organization from my friend Beckie that is here in Middle Tennessee called Sweet Sleep which strives to provide a bed for every orphan in Haiti, Africa and other countries. Of course orphans are near and dear to my heart and there are THOUSANDS of them there right now who are homeless.

"Even before the earthquake, there were an estimated 800,000 orphans in Haiti, which is why Sweet Sleep expanded its global mission to include the impoverished nation late last year. Sources say prior to [the] 7.0 earthquake there were approximately 800,000 orphans in Haiti. Some reports estimate that number could have tripled. The organization's work with these children is not limited to the earthquake recovery effort but will continue for years to come."

There are several ways you can get involved with Sweet Sleep. Don't let this opportunity pass you by!


I admit it, I was a skeptic. The news people said all week that the snow was coming, and I didn't believe them. They predicted 8-12 inches, and I laughed. Literally. On Thursday afternoon they cancelled Friday's school, and we jumped for joy! But still, there was not a drop of snow in sight and I said, "We'll see...".

Because you see, last time they said we were going to have a HUGE storm, and well... they were wrong! HA!

When I woke up on Friday morning, I opened my blinds to SEE... nothing. The kids excitedly ran to the windows and were immediately let down. Awww. Still they assured us, "The snow IS coming!" We waited and we waited and we waited. Facebook was filled with jokes about seeing random snow flakes and stores being sold out of milk and bread... and then, finally the snowflakes started to fall.

They fell and they fell and they fell...

And then there was a 20 car pile up on the highway because people in Tennessee don't know how to drive in the snow. *sigh*

One day and 6 inches of snow later, we let the kids outside... it was too fluffy to really build a good snowman, but we managed a little one who Keeghan named "Snow Berry" LOL. They had a lot of fun... except Kellsey... she doesn't seem to like snow much. Oh well! haha She stuck by me and we wandered around. I think she wanted to get in the car and GO somewhere! :)

We enjoyed our first (and probably only) "real" snow of the year. Popular vote says school will most likely be out again tomorrow... we'll see. Thanks weather people, for getting it right this time! ;o)

Saturday, January 30, 2010

NOT Under construction....

Welcome to our new and improved blog layout!!!! Thank you to my wonderful blog guru for getting it going!!! And I know everyone is happy to FINALLY see Kellsey up in the header!!! Photos are courtesy of Jamie Wright Photography. I will get the kids' individual pics posted soon!

Here is our family picture!

This blog is currently under construction... if you're here in the middle of it, you may see a big ole mess, but I promise, the end result will be fabulous!. I'll post again when the transformation is complete! :)

Friday, January 29, 2010

The Lantern


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The Military community is such a special thing... we have a bond like no other. Living in a Military town, I have experienced this time and time again. Recently, I was asked to be a part of something very special in Clarksville and I jumped at the chance. A new ministry is starting here for Military wives, of all faiths, to come together and support one another, love one another and lean on each other.

The leadership team that has come together has worked tirelessly to bring their unique talents to organize The Lantern and get it ready for our big kick off on February 18th. Each of us are so excited about the different ways we can serve each other and our community! I cannot wait to meet many new wives to pray with, fellowship with and just make new friends!

Be sure to check out our blog (uhhh guess who was put in charge of THAT?! LOL) and find us on facebook and if you're a Military wife in Clarksville, PLEASE come hang out with us! We'd love to have you!

Here is a promotional video a few of the ladies put together last week! It's a great look into the life of a Military wife! I am so sad I missed out on it, but I was in Philly! Oh well! :) Most of all please be praying for this new ministry in Clarksville as we start out and grow! I know God is going to bless it!

Thank you!!

Thank you to everyone who commented on our post to raise money for the children in Haiti!! We had 150 comments which comes out to $37.50 BUT with matching funds by Johnson & Johnson it brings it up to $112.50. That may not seem like a lot in the grand scheme, but every penny helps! It was nice to see a lot of lurkers come out of the closet too! Thanks!! :)

Because of J&J's matching funds, we have to select an organization to donate to from their list, so we chose SOS Children's Villages International.

Here is a little about them:
SOS Children's Villages is assessing the most immediate needs of the thousands of victims of this disaster and will provide medical supplies, drinking water and basic food supplies. In the days and weeks to come, SOS Children's Villages Haiti will provide temporary care for children who are not accompanied by adults or even long-term care for children who have lost their parents in this terrible catastrophe.

Thanks again for commenting for the cause! I hope to do this again this year for different causes close to my heart! Be watching!

And now I leave you with more old pictures of Kennedy... I'm feeling nostalgic, can you tell?! LOL These were taken April 2006. She was almost 2!

Fun at the park

I do believe she is calling me a loser! LOL

Thursday, January 28, 2010

Old pictures...

I've been going through old pictures today... these were some of my favorites of Kennedy... I took these of her in our front yard Fall 2005. She was about 17 months old. SO cute!
What is this??

I think I like it!

I can hold it...

This is amazing!

I need to think about this...

Let me show you my tongue!

OK Ready???


I found another one!

Hey, it landed on me!!

Let's see what happens when I bang them together...

MMMM Yummy!

This has been an interesting experience!

Wednesday, January 27, 2010

A Plea for Haiti... and MY pact!

So, my friend Bethany posted on her blog a plea for Haiti. I haven't been following the news ALL that closely. I turn it on, I watch for a few minutes and then I get busy... or I catch a story or two online and think, "WOW!" I have several friends who are (or were) in the process of adopting from there and are now on an indefinite hold. And I have to say, I'm pretty blind to most of what's going on. I admit I am often trapped in my own little world.

There has been a blogger movement though which I think is awesome and would love to take part in... so first, read these facts...

The devastation from the earthquake in Haiti is extreme.

140,000 people were killed.

1,000,000 people are homeless.

There are several programs in place to help right now... people all over the world are doing their part. You can go to Bethany's blog to read more about that.

And for our family, we are going to step in and do our part too... through you. For every comment left on this post with a name between now and Friday, January 29, 2010 12:00 PM CST, we will donate 25 cents to the Haiti relief fund. AND we have it set up so Johnson & Johnson (my mom's company) will match the donation 2 to 1 so our total will be tripled! :o)

I know you. I know you're out there reading. I've seen you all come out in droves before. Come, comment. Leave your name! Spread the word. Keep in mind that over half this nation's population is under the age of 18. The kids in Haiti need our help!!! You can make a difference!

Tuesday, January 26, 2010

What Is Butt Dust??

What, you ask, is 'Butt dust'? Read on and you'll discover the joy in it! These kids are hilarious!!!

JACK (age 3)
was watching his Mom breast-feeding his new baby sister.... After a while he asked: 'Mom why have you got two? Is one for hot and one for cold milk?'

MELANIE (age 5)
asked her Granny how old she was.. Granny replied she was so old she didn't remember any more. Melanie said, 'If you don't remember you must look in the back of your panties. Mine say five to six.'

STEVEN (age 3)
hugged and kissed his Mom good night. 'I love you so much that when you die I'm going to bury you outside my bedroom window.'

BRITTANY (age 4)
had an ear ache and wanted a pain killer. She tried in vain to take the lid off the bottle.. Seeing her frustration, her Mom explained it was a child-proof cap and she'd have to open it for her. Eyes wide with wonder, the little girl asked: 'How does it know it's me?'

SUSAN (age 4)
was drinking juice when she got the hiccups. 'Please don't give me this juice again,' she said, 'It makes my teeth cough..'

DJ (age 4)
stepped onto the bathroom scale and asked: 'How much do I cost?'

CLINTON (age 5) was in his bedroom looking worried When his Mom asked what was troubling him, he replied, 'I don't know what'll happen with this bed when I get married. How will my wife fit in it?'

MARC (age 4) was engrossed in a young couple that were hugging and kissing in a restaurant. Without taking his eyes off them, he asked his dad: 'Why is he whispering in her mouth?'

TAMMY(age 4) was with her mother when they met an elderly, rather wrinkled woman her Mom knew. Tammy looked at her for a while and then asked, 'Why doesn't your skin fit your face?'

JAMES (age 4)was listening to a Bible story. His dad read: 'The man named Lot was warned to take his wife and flee out of the city but his wife looked back and was turned to salt..' Concerned, James asked: 'What happened to the flea?'

The Sermon I think this Mom will never forget

This particular Sunday sermon.....'Dear Lord,' the minister began, with arms extended toward heaven and a rapturous look on his upturned face. 'Without you, we are but dust...' He would have continued but at that moment my very obedient daughter who was listening leaned over to me and asked quite audibly in her shrill little four year old girl voice, 'Mom, what is butt dust?'

Q&A #134

Renee, first I have to tell you I delved into your archives a bit before asking this, but I was wondering what exactly an AAI and AOI are? I looked to see if there was a post explaining, and there may well be one I couldn't find :)
Atlantoaxial instability (at-lan-toe-ax-ee-ul instability), often referred to as AAI, is a condition affecting the two bones at the top of the spinal cord. About 15% of people with Down syndrome will have AAI diagnosed on an x-ray. Because people with Down syndrome can have somewhat stretchier ligaments, the two bones at the top of the neck (called C1 and C2) may be prone to excessive movement. Often this condition causes no problems, but very rarely it can affect the underlying nerves leading to serious neurological problems.

There are two forms of atlantoaxial instability: asymptomatic AAI and symptomatic AAI. Asymptomatic AAI means that the condition is not causing any symptoms in the person that has it. Symptomatic AAI occurs when the excessive movement of the vertebrae cause neurological problems which can range from mild to severe. People with symptomatic AAI should see a neurologist immediately to assess their symptoms and come up with a plan to manage the disorder.

Most people with Down syndrome do not have AAI in either form. Approximately 10-20% of people with Down syndrome will have asymptomatic AAI and will not require any medical treatment. Only 1-2% of people with Down syndrome will have symptomatic AAI. The treatments for symptomatic AAI include a soft collar or neck brace, muscle relaxants and sometimes surgery.

You can read more here.

Atlanto Occipital Instability (AOI) is similar to AAI except that it's even MORE rare and more highly missed on x-rays because techs don't know to look for it a lot of times. Instead of a gap between the C1 and C2 vertebrae like AAI, AOI is a gap between the Occipital bone and the C1 vertebrae. A typical adult has 1mm of movement here, Kennedy had 13mm - which is crazy.

The DS Healthcare guidelines say this on neck xray - "Cervical spine x-rays: flexion, neutral and extension, between 3-5 years of age. Repeat as needed for Special Olympics participation. Neurological examination at each visit". Dr. Leshin says once between 3-5 years of age and if OK, then you don't need to do it anymore. We do the x-ray every 3 years, just to be on the safe side. Hope that helps.
Thanks Debbie!

I wanted to add that AAI can develop later. Hannah was cleared when she was 2.5, and when they retested her at age 10 (prior to T&A surgery) she was borderline. The doctors want to check her again when she's done growing. They are now advising AAI x-rays be repeated during late adolescence.
Thanks Beth!! Good to know!! :)

Did you slip on something or what? Did anyone from the airport see you fall? They should have written it up just for safety measures. No I am not saying you should sue them. I am not that way unless it is absolutely warranted, but if you happen to have a lot of problems you might need them to help with medical bills. If not then nothing is lost.
No, I was holding Kennedy's hand and she was running and tripped me and we both went down... so I grabbed onto her to keep her from hitting the floor and it resulted in my knee, shoulder, and elbow taking the brunt of the fall. Better me than her though! I am almost back to normal today! Just a twinge in my shoulder still!

BTW, this is gross but if you get a sample of poop and cannot get to doctor for a few hours (up to 24 I think) you can always put it in a container and keep it cold (like put in cooler with ice around it) but not to cold so it freezes. Although ask them before doing this but most people cannot poop on command. LOL!!
EWWWW! LOL Actually the stuff I have to mix it with has preservatives in it so it will last a couple days without being cold, thank goodness! She just needs to GO now!

Hey, when are you putting Kellsey's picture in the top of the blog?
Soon soon soon! We have our pictures back (well the digital ones anyway) and I've been DYING to post them on facebook but I'm waiting for our blog guru to remake my blog first! haha I think she's going to do it this weekend! :)

Uhmmm, don't hate me here...but we eat our cheese steaks with SAUCE and AMERICAN cheese up here in Northeast PA/Northwest NJ Many steak shops make their own special sauce (tomato based). Joe's Steak Shop is the best! YUM!

Renee, I think this new effort is great. I was wondering if you and the many other people who are raising their children who were adopted from those parts of the world have made any attempts to contact the newspapers in those countries about what a normal life is like for the kids once they get here. It seems that if there was some support of journalists that the doctors are wrong to push the kids away, and bring awareness to this effort it might be helpful to change minds and spread the word!
I haven't, but that's a great idea! :)

Hi Renee- I'm so glad you guys are getting orthotics for Kennedy. Lila's ankles were/are pronated and the ortho told us the same thing. It made sense after he explained it to us. He told us that her bones would grow incorrectly if we didn't correct the problem now, and it would become a "life" problem. Lila will probably be wearing orthotics for a few years. We have found that if we take the liners out of her shoes that they will fit in most shoes. Just our experience. : )
Thanks Linda! We are going to get her appointment made this week. Definitely don't want any long term problems!

Kelsie Karnes

We first met Kelsie Karnes while we were inpatient at Vanderbilt back in 2007. Kelsie and Kennedy were both going through chemo. Kelsie's mom Tammy and I talked about our girls and chemo, Kennedy showed Kelsie her newest Groovy Girl, and I mentioned to Kelsie how much I LOVED her name. :o)

We've been following Kelsie's journey through cancer since then. It's been a long, hard fight for her, but she is strong and has been fighting hard. Right now though, her body is weak and her tumors are spreading. She can't withstand anymore chemo right now, so they are trying to manage her pain and keep her comfortable. We are ALL praying that her body will get stronger once she has a rest from chemo and she can once again start treatment. It's been a long 4 years but we are praying for many, many more!!

Please go visit Kelsie and join her family and all her friends in praying for her and lifting them up. Just one more reminder... cancer sucks!

Sunday, January 24, 2010

Just a quick note...

to say we are home safely! The girls did well on the flight home! We are all tired! Both girls are sleeping soundly! My mom still has the other 3 kids because we realized yesterday that my van is still in the shop to get the water pump fixed and once Frank leaves for work tomorrow, I'll have no way to get the kids to school in the morning! HA!

SO My mom is going to take Kass and Kam to school tomorrow and then drop Keeghan off with me. My next door neighbor is going to run my mom to the car shop so she can pick up my van and bring it back to me so I can... you know... drive places! LOL Kennedy has an oncology appointment tomorrow so she will be missing school again! We will head to Vandy around 9:30 tomorrow morning. I'm supposed to take a stool sample in for Kellsey to the Down syndrome clinic tomorrow as well, but I have nothing to take in, so I'm really hoping she poops tomorrow! Sorry, too much information, I know! haha

Anyway, we are off to bed... Kennedy and I slipped and fell in the airport on the way to the bathroom tonight and I hit my left shoulder and knee pretty hard so I'm going to go lie down with a heating pad and hope it feels better tomorrow! I have too much to do to be sore! LOL

I'll get pics from our trip posted soon! :)

Saturday, January 23, 2010

Q&A #133

So, does every Down Syndrome child HAVE to go to an orphanage? Or can the family keep them if they want to?
Technically, they can ALWAYS keep their child if they want to, but right now in Eastern Europe doctors put an unbelievable pressure on parents to put their children who are not "perfect" into an orphanage. Parents are told that these kids have NO chance at a normal life, that they will NOT progress, that they CANNOT learn and that they would be better off just forgetting about them and trying to have another baby. In many countries you are looked down upon socially if you choose to keep your child with a disability, so to save face, the parents abandon them at the hospital. They sign away their rights and the child is transferred to the orphanage as soon as he/she is healthy enough to do so. Kellsey was one month old when she went to hers.

Ok, so what's a Philly Cheesesteak?? And why are they SOO great?? =] Please enlighten me! I'm morbily curious! =]
Wellllll you can see a picture here. They are meaty, cheesy, gooey, greasy yumminess! MMMMM LOL If you get any on your clothes, you may as well throw them away! LOL They're about 10,000 calories! HA! And you have to know how to order! My friend Stephanie schooled me in ordering cheesesteaks. I like mine "Whiz-with". That's cheese whiz with onions. But if you say all that they roll their eyes at you and they know you're a foreigner! LOL You just say "Whiz with". Or you can get "whiz without" or you can get provolone cheese or other stuff, but I don't know how to order any of that... because that's not a REAL cheesesteak. I'm just sayin'. LOL (And my mom said the picture I posted looks like Arby's... and to that I say, "Bite your tongue!" LOL) :o)

I have to admit in my 1.5 years here I have not tried cheesesteaks from Geno's, Pat's, Sonny's, or whereever else people say is the best! I don't understand why they are so wonderful... yet?! I've tried one cheesesteak place at the Reading Terminal Market. It was good but not like wow, I've gotta have another one! ;-)
Ohhhh you HAVE to!!! They are all good I guess, but I'm a Geno's girl! :)

What kind of controversy did the cheesesteak cause?
Ohhh just a little drama over where to eat them and WHY... or why NOT LOL If you're one of my facebook friends you can go read! I stayed FAR removed from the conversation! :)

I take it your choice of topping wasn't what some people thought it should be?
Have you checked out Love Park??

It's all about Whiz With! LOL I've actually never heard of Love Park! Where is it??

Are you at CHOP Renee? We loved it there, Philly is great!
We were actually at Shriner's, but Kennedy had a CT and MRI done at CHOP the very first time we were up here and it was a wonderful hospital!

So if the AAI does require surgery will it also require the halo like Kennedy had?
Yes. The halo is used to stabilize the neck after surgery so it heals properly. IF Kellsey does require surgery, she would be in a halo.

I was going to say run to another hospital....ugh {cause you might find a doctor that isn't into that will help eh} I'm praying that Kellsey wont have surgery.
Dr. Samdani is definitely not rushing to surgery. We are in a "wait and see" stance right now. He won't even rush into the MRI for her at this point since it requires sedation. Kellsey is in THE best possible hands she can be in, I have NO doubt in my mind of that. The only way he would operate is if it were absolutely necessary for Kellsey's safety. He too is hoping surgery can be avoided. :)

Yey Kennedy! And I will say a prayer that Kellsey doesn't need surgery too. I have a ? for you though. James has his AAI x-ray at 3 and another at 5. His diagnosis at 3 was he *may* have AAI but it was so mild that just being cautious was enough. His diagnosis at 5 was, they didn't see any indication of it so he was cleared. I went to put him in soccer this season and took the clearance to his new doc and she said he needed another x-ray because AAI can develop???? I have never heard that! (and I don't trust this new doc very much) I was always led to believe you either have it or you don't. Since you are the most BTDT mom on AAI I know I thought I would ask you. Did the K's doc say it could develop later?
As far as I have ever heard, once your child has been cleared, that's it. You're good to go. BUT we've never been in the "cleared" status, so I'm not really sure about that! Maybe some other moms can chime in here though?!

Friday, January 22, 2010

Kennedy and Kellsey appointment update

We are done with Kennedy and Kellsey's appointments at Shriner's! The girls were both great there! It's always a long morning when we are there... They try their best to get us in and out, but there are lots of kids to be seen and they have to get x-rays done and this time we had lots of paperwork to fill out for Kellsey so it was hectic, but they did wonderful! :)

Here are the x-rays of Kennedy's neck... I snapped them with my phone off their computer screen. These always fascinate me! I wish you could see them as clearly as I can in the office. You can actually SEE the ridges on the screws. It's kind of cool and gross and crazy all at the same time!

Anyway, Dr. Samdani said that Kennedy's neck continues to heal beautifully! :) Just what we want to hear!! He wants to see her again in July on the 2 year anniversary of her surgery and then we go to once a year visits, so it will be every July that we'll be up here. Still no tumbling, trampolines or anything like that for her, but we can live with that! :)

NOW onto Miss Kellsey. I have to say, she's had us on easy street so far and we really figured this appointment would be a formality to clear her for her AAI screening which all kids with Down syndrome should get around age 3. Once they are cleared they are free to do things like gymnastics, horseback riding, trampolines and other fun stuff that all kids enjoy. However, today's x-rays showed that Kellsey does in fact have Atlantoaxial Instability as well. *sigh* I could tell as soon as they brought the films up on the computer, that there was a gap. *bleh*

Kellsey's Instability is different than Kennedy's in several areas...

Kennedy had severe Atlanto-occipital instability (AOI), which is a gap between the skull (occipital bone) and the C1 vertebrae. She also had moderate Atlantoaxial Instability (AAI), which is a gap between the C1 and C2 vertebrae. Due to the severity of Kennedy's instability, she was immediately put into a neck brace to stabilize her neck in the event that she should fall or sustain any injury. They said it could have paralyzed her... or worse.

Kellsey does not appear to have AOI, which is good. She does however have AAI. Right now they know it's not severe enough to warrant it as an emergent case. With Kennedy we couldn't even leave with hospital without a CT scan. Dr. Samdani feels comfortable enough watching Kellsey for now. He eventually wants to do an MRI which is the definitive look at the bones in the neck to see what her status is. However, since she'll have to be put to sleep for this, he wants to wait until she gets a little bigger. When we come back in July, Kellsey will have another appointment and more x-rays. Depending on those films, he will decide what to do next.

In the meantime, she is on many of the same restrictions as Kennedy... no trampolines, no bounce houses, no gymnastics or tumbling, no horseback riding, no contact sports. We can put her in ballet though :). The big question of course is, "Will she have to have surgery like Kennedy?" and until we get the MRI, we don't know the answer to that. We are praying hard that she won't! I hate saying, "I don't know" but... that's that. I don't know. Dr. Samdani doesn't know. Only God knows. And we are trusting Him. As always.

Anyway, enough medical crud. The girls are napping now thanks to the wonderful black out curtains in the hotel and in a couple hours we are off to dinner at Sabrina's Cafe with our friend Jen! Can't WAIT!!!! :)

Thursday, January 21, 2010

In Philly...

We are here in Philly! Today was easy! I was thinking we started off badly when I realized 15 minutes into our drive to the airport that I forgot my winter coat (OOPS!) but of all the things that could have gone wrong, that was just sooooo not important... even if it IS 20 degrees here! LOL

We got to the airport and checked in and through security with no problem. We had time to grab some coffee (hot chocolate for me lol) from Starbucks and a snack for the girls and then our plane was only half full so we got to spread out there! The girls were GREAT on the plane! Kellsey sat next to Frank and looked at books and played with her baby, and Kennedy sat by me and used my phone (while she was allowed to) and played her games on there. Before we knew it, it was time to land! We got our luggage, got to our rental car, and they upgraded us to a minivan for FREE which was nice of them!

THEN we headed off in search of a winter coat for me! Actually with the sun out, the weather wasn't too bad here, but I knew it wouldn't stay so warm! We hit up Burlington Coat Factory and I found a nice jacket at a good price... I REALLY needed one too... so that made it easier for me to buy it! LOL I won't have to wear Frank's Army fleece anymore! :)

We ran by Boston Market and grabbed a snack, then we checked into our hotel and the girls ate and then we all rested a bit. We met up with my friend Joy and her daughter Katie for dinner at Sonny's for cheesesteaks...

I posted that picture on my facebook page and it caused a bit of a controversy! LOL Go figure! My tummy is full and happy! :)

The girls are bathed and ready for bed now! Their appointments are at 9:45 tomorrow morning and we expect nothing but good reports for both of them! It's been a good day in Philly... we really feel like this is our home away from home!!! :) I love it here!

And we're off...

Frank, Kennedy, Kellsey and I are off to the airport so we can go to Philly!! My mom took the other 3 kids last night. Keeghan was so excited to sleep at Grandma's house. He packed his own bag with his rocket ship, his Theodore and his Hopkins (from Signing Time). Good thing he has a Mommy to worry about the non-important things like clothes! HA!

We're supposed to have pretty bad weather here this morning so please be praying for safe travels for us! I will update when we get settled in Philly... maybe after a Philly cheesesteak or two! ;)

Until then! :)

Wednesday, January 20, 2010

Q&A #132

Renee.... may I copy this post and email it to my family? They would LOVE that...We should get together at Pancho's again!
Absolutely! And yes, we DO need to get together at Pancho's again! It's been FAR too long!!!

When does Frank leave again? And for how long?
He will be leaving sometime in March, for a year.

Will he be on the front line where all the fighting happens or somewhere else that is not so dangerous. Again forgive me for sounding ignorant but I read another blog where the wife said her husband was not on the front line so therefore he was not in such a dangerous area. I understand that no place is completely safe.
Frank is an apache electrician. Like you said, no place is completely safe, but compared to the guys on the front lines, I feel like he is safer... if there is such a thing. Once he gets to where he's going he usually stays there for the majority of the time, which is good.

Please say a prayer for the family and friends of my friend Matt, who drowned this weekend while hunting with his dad. He was 25 and a young minister (like me). He had a lot of friends who are all having a very hard time making sense of this!
Will do! Many prayers for his friends and family! How sad :(.

did you get the A&C dolls at McDonalds....we went all over to get a complete set for both girls
Yep! We have the whole set... it took us forever to find Theodore though and of course that was the one Keeghan REALLY wanted! LOL

Mabry has suddenly gotten into, "Gabba Gabba." I watched the show and honestly, what is the appeal?!
I REALLY don't get it either, but Keeghan just adores them! Obviously! LOL Whatever makes him happy... I guess! LOL

your thinking about the dentist wrong, no ones screaming, fighting, needs you. you just get to sit and relax (kind of)
Hmmm not really my idea of relaxing... LOL Though he did get a good chuckle over everyone on my facebook saying they hated the dentist! hehe

my nephew is allergic to any juices with apple, citrus or pineapple in it. He gets a similar rash to what Kellsey seems to have. He is ok with all other juices though.
Hmmm interesting!!! So... what's left?? Grape?? Seems like fruit punch would have citrus... I guess it's a good thing she doesn't like juice much!

She does okay with fruits though, right? That doesn't make her break out?
WELL she hasn't actually eaten a whole lot of fruits! I was giving her applesauce back when she was breaking out really bad, but we ran out and I haven't thought to buy anymore... which is another piece to this puzzle maybe. She DOES eat grapes and bananas ok though! We haven't tried things with her like pineapple or even regular apples yet. Hmmm... But the applesauce could very well have been contributing to the breakouts since I'm 99% sure it was the apple juice that made her break out this time.

Have you ever tried the dry skin/rash/eczema cream that is the same brand as triple paste? I just got some the other day and have heard great things about it. Good luck getting her face to clear-always a challenge! Aquaphor seems to work well too to protect and heal broken down skin.
No, but I will look for it. We have tried aquaphor and it makes her skin worse. Go figure!

Tuesday, January 19, 2010

State of Chaos

Frank shifted from working nights to working mornings today. This shift always throws me. I personally love it when he works nights. He's here in the mornings to stay with Keeghan and Kellsey when I take the 3 big kids to school and we can spend a lot of quality time together during the day before he goes off to work. True, I'm on my own in the afternoons and evenings for dinner and homework and bath time and bedtime, but that just seems less hectic to me than mornings for some reason. I guess because I'm AWAKE then. I don't function well in the mornings. LOL

So, this morning was... chaos! I thought I had everything under control actually. Last night I thought ahead... I put Kellsey and Keeghan in footed jammies that they could just wear in the car, so I would save time by not having to dress them. I had Kassidy, Kameron and Kennedy's clothes laid out. I never check backpacks until morning. I actually thought about doing THAT last night, but well... I realized around 11:00 that they were in the car, so there went that idea! The 3 big kids were bathed, they were all in bed... I was ready for morning. NOT!

It started with me waking up late UGH! My alarm clock just fit into the dream I was having... does that ever happen to you? But I didn't panic, I wasn't TOO late and I still had plenty of time. Kassidy was already awake so I handed her clothes to her and told her to get dressed and brush her hair. Keeghan woke up not long after. I changed his diaper, kept him in his jammies, and he went off to play.

A few minutes later I woke up a VERY grumpy Kameron who came down to lay on the couch. We were still on schedule. No problem. I told Kameron to get dressed and sent Kass out to the car to get backpacks. I went to grab Kennedy out of bed and carry her lifeless body up to the bathroom to go potty. She mumbled something about it still being "night time!" LOL

After she went potty and got her jammies off, I came downstairs to find Kameron not dressed! OK a little panic started to set in. "Kameron! DRESSED NOW!" I reprimanded. So he slowwwwwly moved off the couch and got dressed while I handed Kennedy her panties and pants to put on while I pulled her shirt over her head. In the meantime Kassidy yells, "MOM! Keeghan's KICKING me!!!" UGH! "Keeghan! NO Kicking!" I say. Keeghan yells back, "NOOOOOOO!" *sigh*

I send the big kids up to brush teeth and find socks (which they can NEVER find... you'd think I hide them or something!) and then tell them to bring me folders to sign. I get to Kennedy's folder and... my heart sinks. I forgot. I remembered yesterday and then I forgot. Crap. Today is Kennedy's snack day. UGH! I look at Keeghan who's in his jammies, think about Kellsey who's still sleeping, look at my own jammies, look at the clock, and think, "OK focus!" And I say quietly, "There's no way... you're going to be late." Wrong thing to say!

SO Kameron then starts bawling, "I can't be late! It will ruin my perfect attendance and then I won't get my perfect principal's award!" and Kassidy says, "But you haven't straightened my hair yet!" And Kennedy says, "Keeghan's KICKING me!!" AHHHHHHHHH FOCUS!

SO I run downstairs, grab clothes for Keeghan, throw them to Kassidy who thankfully dresses him for me. Then I run to get Kellsey up... and she's awake but SOAKED. LOVELY! So I grab her clothes, wipe her down, change her diaper, tell Kameron to chill out! and then realize that I'm still not dressed! SO Kassidy gets shoes on Kellsey and Keeghan while I throw on clothes and throw my hair in a pony tail, do Kennedy's and Kellsey's hair really fast, and we jump in the car, get everyone buckled, I hand them all breakfast bars, and we make it to school in time. Barely. And Kassidy has wavy hair. Sorry Kass.

THEN Kellsey, Keeghan and I run to Wal-Mart to get Kennedy's snack. Keeghan decides he wants to walk so we go pick out her snack and then he takes me on a tour of Wal-Mart. We spend about 30 minutes wandering around looking at things I didn't even know Wal-Mart had. We talk about the different items and what color they are and I find out that he likes olive loaf. Or so he says. Hmm. LOL I didn't buy him any to find out for sure. Then he showed everyone he could find his super cool Wal-Mart sticker. It's been my most interesting trip to Wal-Mart ever! LOL But at least we got time to breathe!

We ran back to the school, dropped off snack, now Keeghan and Kellsey are playing for a few minutes and now we're off again... they're going to grandma's house and I get to go... to the dentist. Pretty sure that just tops my morning! HA! Tomorrow I'll be back in routine... and it will be better. I hope. LOL

Monday, January 18, 2010

The Chipmunks

Ever since right before Christmas, the newest household favorite around here has been Alvin and the Chipmunks. We saw the second Chipmunks movie at the theater and all 5 kids absolutely loved it! Kennedy seemed to be the biggest fan, and so when I found an Alvin doll I bought it for her for Christmas. Little did we know that Keeghan would then have SERIOUS chipmunk envy! LOL He now has his very own Theodore who he loves almost as much as his Yo Gabba Gabbas!

Anyway, today at the mall we walked into the movie theater, and guess what we saw...

It was like CHRISTMAS all over again! LOL You would have thought they were REAL! haha

Kellsey was in the middle of some random 3 year old temper tantrum or something... we haven't quite figured it out yet. Anyway, no pics of her during this time. You wouldn't have wanted to witness the meltdown. Trust me! LOL Fortunately she got over it quickly and we all enjoyed the movie! :) And then the whole way home we listened to the chipmunks... like we do every day. Poor Kellsey probably thinks that's how everyone sings in this country! HA! I wonder how long Chipmunkmania will last? Hmmmmm.....

Busy busy!!!

I feel like I'm slacking a bit over here in blogland! I know, I haven't posted updated pics in forever! I really haven't taken any! I need to work on that! And a new blog layout is coming soon... I think!

We have had a busy, but fun, weekend!! Saturday we spent much of the day doing some early Spring cleaning... not that there's much sign of Spring yet, but really, it needed doing badly and we got a lot thrown out and cleaned up. Kass and Kam were a HUGE help. After we were done we actually did see a robin outside so maybe Spring is on the horizon?! Who knows?!

Saturday night, our friends Michael and Chelsea and their girls Kozbi and Kelyn came over for dinner and we all hung out... Frank cooked, the kids played, we talked and laughed. It was fun :). No pictures... and I'm really not sure how that happened! I wasn't thinking I guess! I'll fix that next time! :)

Sunday we had church and then our small group... and I managed to sneak in a nap in between! There's some exciting things happening in our family involving our church right now, but you're just going to have to wait a bit to find out what! ;)

Today the kids are off school and Frank is off work... It's Martin Luther King Jr. Day... Frank asked Kassidy and Kameron last night what they know about him. Kameron said that he was the man that made it possible for people of all colors to go to school together and without him that Frank and I wouldn't be allowed to be married and that he (Kameron) and Kassidy wouldn't have been born. Hmm Very true! Kassidy said, "What he said!" LOL So we talked a little about Martin Luther King and his "I have a Dream" speech.

I just got back from lunch with all the girls from our community group. Love hanging out with them... and having girl time!! We went to Relish which is a fairly new restaurant in Clarksville. If you are local, be sure to go check it out! It's yummy!! (And if you friend them on Facebook and let them know, you get a free cookie!) Frank took all 5 kids out to DQ for lunch and then took Kameron to get a haircut. :) I'm waiting for them to get back and then we are going to head to the mall and go to the movies. We plan on making the most of our day off!!

The only other thing we've been doing is playing a lot of Apples to Apples with the kids... I played for the first time a couple weeks ago at a mom's night out and loved it, so I bought the kid's version and we have been having a blast! I'm pretty sure Kameron cheats though... I'm just trying to figure out how he's doing it. Hmmm... LOL

Anyway, there's my catch up post and mindless babble... next time pictures, I promise! Still no word from Vandy on any test results for Kellsey... hopefully soon! Frank just pulled in the driveway! Off to spend time with my family!!!

Sunday, January 17, 2010

Here's What Stress Is

I could probably define stress in a lot of ways... in the Army Times they published this article in reference to what happened at Fort Hood in November. As we face another deployment soon, this brought tears to my eyes. My heart goes out to all the Military spouses who have ever received that phone call... or even worse, that knock on the door. I don't even think "stress" begins to cover it...


Stress? President Obama suggests Maj. Nidal Hasan cracked under stress. That's a slap in the face to the men and women who have deployed countless times and have yet to pick up a gun and start shooting their own. I don't buy the stress defense.

Want to know what stress is? I will take it from the point of view of an Army wife:

Stress is:

*Knowing your husband leaves in a few weeks and making sure you have all legal documents in order in case he doesn't come back, he's taken POW or you need his signature to proceed with any number of legal, bank or personal dealings while he is deployed.

*Sitting in a gymnasium for a few hours knowing those are the final moments you will spend with him for 12 to 15 months.

*Keeping your chin up and telling him, "Goodbye" and "stay safe" and holding your tears back because he whispered, "Don't cry, babe" in your ear.

*Watching the man you love march out with his unit and wave back at you one last time.

*Not hearing from your husband for a week or two until his unit is finally settled in whatever God-forsaken location they are assigned to.

*Coming home and continuing with your everyday life, work, school, children, family, home, pets, vehicles and any other daily activity by yourself and not having the luxury of being able to talk to your spouse about it.

*Watching the news every day and seeing the politicians back home tie soldiers' hands by bringing political correctness into the battlefield.

*Getting a phone call mid-tour telling you your husband is OK but being medevac'd to Germany.

*Calling your husband's rear detachment and having them give you no further information about where your husband is or how badly he is hurt.

*Quitting the best job you ever had to pack up your stuff and move 18 hours back to the post he's assigned to so you can have a place before he gets there.

*Having to feed, bathe and care for your husband because he cannot use his arms.

*Listening to his guilt for not being able to come back with his unit.

*Knowing another deployment is just another year and a half away.

Repeating this cycle two or three or for more times.

I've yet to see an Army wife "crack" and go on an "act of violence that is inexplicable."

Dai H. Salerno
Fort Leonard Wood, Mo.

Kameron's Santa Hat

On Kameron's Christmas list this year, he had two things. The first was a jeep he could drive himself. He didn't get it... mostly because all the ones we could find he's too big for and there's really nowhere to ride something like that around here anyway. The second thing he asked for was a Santa hat. Seriously. I figured this would be an extremely easy thing to find so I waited until the last minute... and then?

No Santa hats... anywhere. Bad mommy! Fortunately I finally found one in a clearance bin on Christmas Eve and Kameron got his Christmas wish. As you can see, it's made him very happy. Chances are, by next year it will be in the bottom of his toy box... long forgotten. But for now he is Super Santa! Or Santa Man! Or whatever else he happens to think up at the time. I just love watching his mind work! :o)

Saturday, January 16, 2010

New Year's Eve

I just ran across this picture in a folder of pictures I haven't edited yet... this was taken just after midnight on New Year's Eve :). All 5 kids stayed awake until midnight and we celebrated by drinking sparkling cider... Kellsey was VERY tired! haha Then we sent the little 3 to bed and we played a game with Kass and Kam and we all went to bed around 1am. I LOVE New Year's Eve! Maybe I'll post some more random pictures later! :)

Q&A #131

FYI, the iPod touch is on it's third generation now, and actually comes in 8GB, 32GB, and 64GB, and the prices came down a little, they start at $199 and it's $299 for the 32GB, for $100 I'd say the extra space is well worth it!
OK SO... I see where you are seeing the 3rd generation iPods, BUT according to Apple, the 3rd generation is not out yet. When it DOES come out, it will have a camera on it. Frank says that the one out that people are calling the 3rd generation is REALLY an updated version of the 2nd generation. They say the announcement will be made on January 26th for when the REAL 3rd generation iPod Touch will be released. But if you know something I don't, please share! :) And I agree, for $100 the extra space is more than worth it!!

While we're on this subject, for those of you considering buying an iPod Touch or an iPhone, please invest in a case. These are usually around $20.00 and you can find really cool ones out there! It will protect your iPod/Phone if dropped. Also, be sure to get a screen protector for it to protect against scratches and stuff. You can get them pretty cheap and apply them yourself OR you can pay more and the people at Best Buy will apply it for you and they will guarantee your screen for a year against cracks and scrapes.

I had to laugh at the commenter from Ireland. I was reading at first not understanding what she was talking about because it was spelled correctly, just didn't make sense! LOL. Then I realized what she was doing (hey, it's still early). That's how Canadians spell things too (well, except for tire) but I too am used to seeing things in American spelling too, so normal for me too. And did you know the U.S. is only one of 3 countries not on the metric system?? U.S., Burma, and Liberia. I think you guys need to jump on the bandwagon, don't you?! LOL.
Ummm no! I'm very set in my ways with my pounds, ounces and miles, thank you very much! LOL

I got a donation from Pediped shoes to take with us to Ukraine! I emailed them and they sent me 60 pairs of shoes! They are a wonderful company. :)
WOW that is SO cool!!!! What a great organization!!! Thanks for sharing! :)

Downloaded toddler flash cards last night for my 5 1/2 yr old foster son who is severely speech delayed and really behind developmentally/academically. He LOVED it. I love how clearly they say each word! Great app! Also downlowned teach me kindergarten. It's ok. But he's just not ready for it yet.
I'm glad he enjoyed it!!! If he's anything like my kids he'll be playing it over and over! haha I bet he'll love the Teach Me Kindergarten in time too, like I said, that's our newest app and Kennedy is getting more and more into it. She LOVES getting the coins as rewards and going "shopping" with her money! LOL

Wasn't Pepto one of the numerous things they've had you try in the past, but didn't work? And do they know why the Flaygl has been working for this? Eventually she won't have to worry about this, or could it come back for her? I know at this point you are just super relieved, but can you imagine what would have happened if they had just done this 2 years ago? I'm sure 2 years of this hasn't helped her little colon.
Nope, we've tried Milk of Magnesia, but not Pepto. They still have no clue why the Flagyl worked. It sounds like this should cure it and it shouldn't come back... that's what we're praying for anyway. And yeah... her oncologist asked for this test to be done two years ago and her old GI wouldn't do it. But whatever. GRR.

Question - what it the "down syndrome clinic"? Never heard of it!! Also - will you go to Hershey when you go to PA?
I copied this right from the Vandy website lol. We are a referral clinic to provide comprehensive medical and professional services to children with Down syndrome by:

Aiding families in acquiring specialized and personal care
Providing current information on health related services
Referring families to resources in their community and their region
Educating communities about the strengths and abilities of children with Down Syndrome

You can read more here. I don't think we're going to have time to go to Hershey this time, unfortunately!

Overall it did not sound like a bad visit and I think you are in with an awesome group of Doctors. How often does the girls need to go to these Docs? Hopefully pretty often since they are really on top of things. LOL!!
They only go once a year for an overall check up... but they are available whenever we need them in between times for anything! It's such a wonderful resource and we are SO glad they are there for us!! :)

Could the alopecia have anything to do with the chemo she had?
They don't think so, but who knows.

Eager to hear what the ECHO shows--did you know she had a murmur?
Yes, we were told she had a "slight murmur" by the orphanage. The doctor that discharged her from Ukraine felt like it was more serious than that though. Still, we knew we wouldn't know for sure until she had an echo done.

Well if you get a chance to stay in the airport for awhile, make sure to say hi to Amnesia for me. She's the worst Chick-Fil-A worker of all time, but at least her name is entertaining.
Oh my... I might just have to go find her for the fun of it! LOL

Friday, January 15, 2010

Kennedy's clinic appointment...

OK sorry again it's taken me so long to update. We've had a kind of busy day. We had to drop my van off at the shop this morning. It's been making this weird ticking sound for about a week now. Then, since Frank had today off, he offered to take Keeghan and Kellsey out to breakfast so I could either a) blog, b) clean my bathroom or c) take a nap. Guess which one I chose???

In the middle of my nap ;), the car place called and my van needs a new water pump AND a new belt. I asked which belt and they told me there is only one. News to me! LOL Anyway, it's going to cost about $400! *sigh* SO we'll drop it off next week while we're in Philly so they can fix it while we're gone. Stupid cars.

Anyway, back to Kennedy's appointment... the developmental ped has been researching the Lymphocytic Colitis that Kennedy was diagnosed with... Partially because she's an awesome, thorough doctor and partially because she's never heard of it before! LOL She said the reason she's never heard of it is because really the only people who ever get it is women in their 50s! There really isn't any info out there for children who get it. But she looked at Kennedy's biopsies and agrees this is what she has. Of course Kennedy would be the trailblazer. LOL She's not convinced that the Children's pepto is going to work. She has a feeling that this treatment is one of those things that works because of the aspirin in it, but she's doing more research to see if she can find anything either supporting or denying that. She also agrees that because of Kennedy's random fevers, she should not be on anything containing aspirin. In the meantime, she said to go ahead and TRY the Children's Pepto... it can't hurt, and maybe it WILL help. Only time will tell. The other alternative is a steroid (not sure what exactly) and she said we really don't want to do that to her unless we have to. Agreed. Moving on.

When the PT was in evaluating Kellsey, Kennedy was walking around in bare feet and the PT asked if she was in orthotics. She hasn't been since she was just learning how to walk. Anyway, she said that Kennedy is really flatfooted and her ankles are pronated (they roll inward) when she walks. Hmm. They said it could affect her all the way up to her hips if we let it go, so she now has a prescription for orthotics which will go into her shoes. We'll get her fitted for them after we get back from Philly. Wasn't expecting that one! Moving on.

Physically, Kennedy looks great! She's still tiny, but she'll probably always be tiny... something tells me even Kellsey will be outgrowing her at some point! LOL But they are pleased with her overall growth and development. The therapists didn't evaluate her yesterday since it wasn't her first visit and she's already in occupational and speech therapy. That didn't stop her from showing off for them though of course! haha They did her yearly echocardiogram and all was well there :). They ordered her lab work but said we could hold off on it until her oncology appointment on the 25th. That way she doesn't have to get stuck twice. So they'll check her thyroid and a couple other things then. Oh and they were able to find her prescription in the system for her glasses, so I'm going to try AGAIN to order them... from somewhere else... I just need to find a place that has cute pink frames for the Sincess! LOL Moving on.

The only other thing that creeped in that kind of threw me is that Kennedy was diagnosed with alopecia. I noticed a spot on the top of her head a few weeks ago where she had lost her hair, but I didn't think too much of it. The doctor assures me this is what it is though. There's no real way to know what's going to happen now. Some people with alopecia lose all their hair... eyebrows, eyelashes, everything. This would be worst case scenario. Obviously. Others just have patches that go bald, and they will sometimes grow back and then fall out again in the same spots. There's really no rhyme or reason to it. It could be that she'll have this one spot and no more. That's not likely... but you never know. If it does get bad, there are things we can try like steroid creams and other stuff... it may or may not work... but one step at a time. Right now it's one spot. I'm praying that it stays that way, or even better that it grows back in! I don't think I even need to say how much I'll miss her hair if it's all gone again. *sigh* Moving... on.

SO around 5:30 we left Vanderbilt. The girls were really good overall! They were both really tired (and so was mommy!) and they were happy to get back into the car an head for home! I grabbed them both Happy Meals on the way and then Kellsey snoozed some while Kennedy sang along to her chipmunks CD. We're still waiting on results from all Kellsey's tests, but I'm sure they'll start trickling in next week. I guess that's about it! I guess I better move on and finish cleaning the bathroom and get started on my kitchen! Back to reality!

Thursday, January 14, 2010

The Down Syndrome Clinic (repost)

In honor of Kellsey's first visit to the Down Syndrome Clinic, I thought I would repost what I wrote when Kennedy went her first time. She was 3 weeks old. She's come SO far since then... and so have I.

The Down Syndrome Clinic
Originally written: June 10, 2004

Today was our first appointment at the Down Syndrome Clinic at Vanderbilt Children's Hospital. We had to be there at 7:30 this morning and we were told to expect to be there for about 4 hours. We had some idea of what to expect, but much of it was unknown. We just knew we would finally be getting some answers about our new daughter.

When we got out of the car in the parking garage, I saw a little boy in a wheelchair with no legs. His mom was pushing him towards the medical center for an appointment; I can only imagine it's been one of many for him. I wondered what happened to him, was he born this way? Was he in an accident? Is he happy?

We went up the elevators and the doors opened to a child wonderland. The walls were covered in bright paintings of animals and cartoon characters. The front desk held an array of children's toys and other pretty things to look at. Nurses bustled around the fairly empty hallway getting ready to start their day. We found the Down Syndrome Clinic and discovered more of the same: A happy office with toys for waiting children to play with, a big fish tank to keep them entertained and more bright colors everywhere. It was a fun place, an upbeat place; definitely not a place to focus on the things that are wrong.

Only one other family was in the waiting room. The baby boy, who I figured to be about 6 months old, was sitting in his car seat. He obviously had Down Syndrome as well. I wondered about his mother… how is she doing now that she's had time to process everything? Is she accepting? Is she adjusted? Does she have peace? Or is she still confused and hurt and angry that her son is not "perfect"? Does she still cry every day, mourning for the child that her son will never be? How long does it take for the pain to go away?

Before long we were called back into another room. Kennedy was weighed and measured and doted on by the staff. They put her into their smallest yellow hospital gown which enveloped her tiny body and kind of made her look like a banana. We filled out some paperwork and were left alone in the exam room. A few minutes later we were taken down the hall to get her echocardiogram done. As the nurse chit chatted along the way, I looked around. Children filled the hallway now. Many of them looked completely normal, completely healthy, while others had outward characteristics telling the reason they were there. My heart wrenched for those who were so clearly worse off than my baby, yet I received the same looks of sympathy when other parents looked at Kennedy. The irony hit me like a brick. The words I had heard so many times since Kennedy was born echoed in my mind, "The Lord will never give you more than you can handle…"

The technician was pleasant and happy. After playing with Kennedy she started the echocardiogram which is basically an ultrasound of her heart. She explained much of what she was doing and even printed off a picture for us before sending us back to our room in the clinic. Now we just had to wait for the results.

Back in our room we did not have to wait long before we got a knock on our door. The first doctor entered and the onslaught of questions began. How is she eating? How is she sleeping? Does she look around? Do you think she can hear? How are her siblings adjusting? How are YOU? What are YOUR concerns? What can we do to help YOU? Then, after oohing and ahhing over our sweet girl, one doctor would leave and minutes later the next would arrive. They answered the questions we had and even answered questions we didn't think to have. They all left business cards and lots of information and encouraged us to call them any time we had a question or concern.

Before long we had seen a nutritionist, a psychologist, a speech therapist, a physical therapist, a genetic counselor and a pediatrician. The most important person we saw though was the cardiologist. He was the man who would tell us the condition of Kennedy's heart and her immediate future. Would she need surgery? If so, would it have to be right away? How serious is this? As he introduced himself my heart started beating in my throat and my hands clenched. Silent prayer flooded my mind. "Please God, just let my baby's heart be ok." After asking another series of questions and briefly checking her out for himself, he was ready to discuss the results of her test. He explained that Kennedy has a small hole in her heart, not unlike many newborns have at birth. This is what had caused her abnormal EKG just 1 week ago. However, he was confident that the hole would close on its own and no surgery would be required. "Kennedy is in the 40% of babies with Down syndrome with no serious heart problem." With those words, relief washed over me and I sank into my chair in exhaustion. "Thank you, God!" The stress of the last few days had me wound tighter than I had thought. No heart problems… no surgery… with those results we were told she will potentially live a long, full life. It would be a different life than her sister and brother, but a happy life all the same.

After 4 ½ hours we were told we could go home. We will see them all again when Kennedy is 6 months old. At that appointment they will be able to see what milestones she has hit and what kind of help she will need for her age. Until then, she is a baby who we get to feed and play with and love.

Kennedy has Down Syndrome. It's a condition that affects her life, but it does not control her life. It does not limit what she will be able to achieve in the future. It does not define who she is. Kennedy is a beautiful, happy little girl who will one day steal her sister's toys and drive her brother crazy when he has friends over. She will go to school and play sports and have lots of friends. She will laugh when she is happy and she will cry when she is sad. She will know she is loved and cherished by everyone around her.

Will it be hard sometimes? Oh yes. Will my heart break when she comes home and tells me she was teased at school? Definitely. Will I still have days when all I want to do is cry and wonder why this happened to her? Probably. But we're going to be ok. With lots of prayer and lots of love our family is going to be just fine.

Kennedy has Down Syndrome. Down Syndrome does not have Kennedy.

Wednesday, January 13, 2010

Kennedy update and stuff...

OK so after my last update about Kennedy's GI issues and their solution of her taking Pepto Bismol, I got a ton just a few ;) emails and comments from people about her being so young and taking Pepto because it has aspirin in it and the fact that it could cause Reye's Syndrome.

SO I talked to her GI doctor about this and she said it wouldn't be a concern unless Kennedy were to get a fever. Well, Kennedy gets random fevers all the time! So to be safe, she said it would probably be better to go with the Children's Pepto Chewable Tablets which does not contain aspirin. She will be taking 1/2 a tablet 3 times a day for 8 weeks. That makes me feel much more comfortable! I knew that regular Pepto was for people 12 and over, I just never knew why. So, thanks!!! :) I always learn so much from you all!

Anyway, that's my medical update for the... day... LOL.

Our vote...

For the next American Idol... for OH so many reasons! Watch!!!

You can visit her mom's blog here and join her facebook fan page here! Go Maddy!!!

Tuesday, January 12, 2010

Our flights are booked! :)

It's almost that time again... time for us to make the trek back to Philadelphia to Shiner's Hospital for Children for Kennedy to get her check up with her surgeon from her spine fusion surgery. I have to admit, I always get a little excited. I LOVE Philadelphia. I love the friends we've made there, and the city, and the food. We have a new place that we are going to try this time recommended by our pastor, who also loves all things Philly. We are going to Max Brenner's Restaurant where they have menu items that might just literally make my taste buds melt. Seriously.

Then we'll try to hit up Sabrina's Cafe of course! That became a favorite of ours when we were there in July... and of course, we'll be getting a Cheesesteak (or two) from the only TRUE Philly Cheesesteak place... Do I even need to say it? YUM!!!!

But I digress, back to the appointments! Kennedy has her appointment on Friday morning, January 22nd. They will do x-rays and NO CT scan this time which is great, because Kennedy HATES those! Kennedy's surgeon also agreed to see Kellsey which is awesome because he will make sure that her neck is fine and we'll have no worries there! Frank is going to go with me to help with the girls, but I think they will be fine! This flight will be a piece of cake for Kellsey compared to flying home from Ukraine. HA! Kennedy always does fine on airplanes, so it should be a fun trip... especially with no CT scan. (Have I mentioned that yet?! LOL)

It will probably be too cold to do much wandering around outdoors, but I know we'll have fun and leave a few pounds heavier. :) I can smell the chocolate from here!

Monday, January 11, 2010

Around the Blogosphere...

There are a few things I am going to link you to... so you have to leave my blog. But I really hope you'll come back! LOL There's lots happening out there in the blog world though that you need to know about! Here are some...

First, many of you will remember Charlie Porter. He was in treatment at Vandy with Kennedy for the same stupid cancer: Acute Myelogenous Leukemia. Sadly, Charlie lost his fight in June 2007. We miss him every day! Last June, Charlie's uncle launched The Charlie Porter Research Grant in his memory. Since then the grant has slowly taken off, but in an effort to really get it off the ground, they have started their first fundraiser!

I am a little late in the game getting this posted, so you're going to have to do some fast shopping, but they are holding a Thirty-One Fundraiser. If you've never seen Thirty-One products, you are missing out! They are super cute bags, purses, totes and lunch bags that you can have monogrammed if you choose. The person selling them is giving 100% of her profits to The Charlie Porter Research Grant! The more that sells, the higher the profit will be!!

To place an order, go to this page, and on the top page click place an order, then on the left hand side click place an order again, then go to Kim Pople.

Fundraiser ends January 13th! So Hurry!!! Happy Shopping!!!

OK next! You may remember seeing some of Lynda's stuff from our silent auction that we had to Bring Kellsey Home last year! Lynda owns a wonderful ETSY store called Sox That Rock. When Kellsey got home, she sent a great little care package for Kellsey and Kennedy with THE most adorable socks in them AND a ballerina clippie for Kennedy that she just LOVES, of course!!

Be sure to go check her out! If you have a girly girl in your life, this is really the place for you! With Valentine's Day coming up, you can't go wrong!

Also, her daughter is crafty too! (Must run in the family!) And she makes cute little hair clips, doll hats, baby blocks, cell phone holders and more! Be sure to check out Hannah's Handy Crafts as well! She has some great stuff! AND 10% of all her sales go back to charities in Guatemala because she wants to give back to the country that gave her brother to her! *sniff* So sweet!

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I know you've heard me talk about my friend Lyndi a lot. She is working hard to bring Freddie home! They just brought Patrick home last year and hope to be going back this Spring for Freddie. Right now they have a Tastefully Simple Fundraiser going on and they are also wanting to do a silent auction on their blog. They were recently donated some toys so they have a good start, but they are looking for more items. If you have anything you would like to donate... if you are crafty, and you make anything you would like to donate or if you sell things like Mary Kay, Avon, Scentsy, etc and would like to donate some items, or even put together a gift basket of items or whatever, PLEASE email Lyndi and let her know! The more items she has, the better! I will let you know when her auction is up and running so you can go shopping there! :)

And last (I promise!) LOL Have you ever heard of Pediped shoes? Me neither. But that's not surprising for me! LOL They SAY they're the next best thing to bare feet, and they are incredibly cute!!! From now until February 5th you can save up to 40% on many styles of Pediped shoes AND 50% of the purchase price will benefit the Make-A-Wish Foundation to grant the wishes of children with life threatening medical conditions. As you know, the Make-A-Wish Foundation holds a special place in our hearts. It was just about a year ago that we were there on Kennedy's trip. Seems like a lifetime! So... what are you waiting for? GO! SHOP! You get to support a good cause, AND buy ridiculously cute shoes! WHY are you still here?! :)

An answer!!!

Kennedy's GI doctor just called and after 2 years of diarrhea they FINALLY have an answer for it! We were praying for something to show up with her endoscopy last week... something with an easy fix. Something to get her off the Flagyl that she's been on forever! AND it looks like our prayers were answered!

Kennedy's upper GI came back totally normal. She definitely does not have Celiac disease, which is GREAT, or any damage to her intestines, and the repair they did on her duodenal web back in 2005 is still holding strong. :) On the lower scope though, they found that she had an over abundance of lymphocytes in the biopsies that they took. She has something pretty rare called Lymphocytic Colitis.

They don't really know what causes this, BUT they said the first thing they're going to try to cure it is Pepto Bismol! How's that for easy?! She needs to take 1 teaspoon 3x a day for 8 weeks. For the first week she will stay on her Flagyl as well and then we will take her off of that. Her doctor is hopeful that this treatment will work. If not, she said there were other things they could try. I didn't ask what they were. I'm just going to pray hard that THIS works! I'm so excited that Kennedy may finally have some relief!!!

They also said she can't have any caffeine and no artificial sweeteners as this can cause the colitis to get worse... so no sweet tea for her for awhile, but she should be ok with that.

We go back to GI in 8 weeks but she said to call in the meantime if this treatment doesn't work. YAY for results! :) Thanks to everyone who has been praying for her!!