Monday, March 31, 2008

Shutting down my blog

Well, after much contemplation I have decided to shut down my blog. It's just taking up too much of my time and I really don't feel like it does any good anyway, so this will be my last post. I do hope to stay in touch with you all on your blogs. Before I go I thought I would leave you with one last picture. Thank you to everyone who has commented on my blog. I appreciate you all. Click Here for the picture.
Signing off,
Renee

Saturday, March 29, 2008

Why it hurts

Tonight I have been surfing the net and checking up on some of my friends from myspace. If you're one of those friends, please know that I finally took down my Christmas music! I'm worse than those people who leave their lights up until June! haha

Anyway, I was browsing through some pictures on a friend's page who is from our church in California (and is involved in leadership there). I saw a picture that literally knocked the wind out of me. I felt sick. Light-headed. And then I felt angry. And now I'm sad.

I thought about posting this picture here so you all could be livid with me, but really, I don't want to give any more credit to the person who created it. (I'm almost positive it was not made by the friend who has this on his page.) Let's just say, it's sick, cruel, disgusting, degrading, and it involves the word "Retard" and a picture of a child with Down syndrome. I can almost hear all of you parents in the Down syndrome community groaning.

A couple years ago, Downsyn, one of the message boards I post on, was hacked into. Pictures of many of the children from the board, including Kennedy's, were stolen. The hackers wrote horrible things on the pictures and reposted them for all to see. Our administrator, Tom, took immediate action to get them removed from the net. Still, our hearts were shattered and our group was shook to the core.

For those of you reading who are NOT part of the Down syndrome community, let's talk about this for a minute, please bear with me. The "R" word is something that some of you might use... you may use it to describe yourself when you do something dumb. "I'm so 'R'." You may use it when you think something that happened was dumb. "Man, that was 'R'." Chances are, if you use it, you've been saying it since childhood and you'll say that you don't mean anything by it. You'll say that you're just joking around. You'll say that it has nothing to do with our kids. "Everyone" says it, right?

So here's the thing. Kids with Down syndrome, in most cases, have mild to moderate mental retardation. It's a medical diagnosis that few avoid. When Kennedy was born, that word made me want to puke. I didn't want to think about it, I didn't want to speak about it and I definitely didn't want anyone else thinking it when they looked at my baby. Even when used in the correct context, I don't think it's ever easy to hear that word in relation to one of your children. Still, it's part of our reality. (Even though we happen to think that Kennedy is one of the 4 most brilliant kids on the planet. ;o)) Darn those IEPs!

SO when we (parents of kids with Down syndrome or other cognitive delays) hear the "R" word being thrown around, used flippantly as a joke, even knowing that the offender most likely doesn't MEAN to be cruel, it hurts us. It hurts badly. And many times we don't say anything because we don't want to risk offending the offender.

I have to say, I have gotten a little more gutsy over the years, but in many cases I'm still chicken. There's a nurse at Vanderbilt that I STILL wish I would have said something to... but there's also the pediatrician I fired because of it (and other issues). I've had conversations with several friends about it, and just a couple days ago my husband talked to his Soldiers in Afghanistan about it. It's THAT important.

The "R" word will NOT be used in our household as a way of degrading oneself or someone else. We are educating our children now, in hopes that they will educate their friends... so many kids today STILL use this word in the wrong way. Kids who will one day go to school with Kennedy are hearing it right now from their parents. They're passing down prejudice, whether they mean to or not. This friend in California is showing that it's ok to make fun of people with Down syndrome... whether he realizes it or not. And it's NOT ok. It's just not.

I hope that what I've said makes sense... it's after midnight and I'm tired and still a little frazzled. I hope that just maybe one person reading this will be touched by this post and realize that I write, not to accuse or condemn, but to educate. I hope that maybe one person who reads this will talk to their children today about this word... and tell them to talk to their friends. I hope that one day Kennedy will be proud of me for helping her, and all kids like her, to be more accepted in today's world.

There are quite a few blogs out in blogland that have addressed this issue in the past week. As hard as it is for us to hear, it's even harder to write about. But as advocates for our kids, we HAVE to stand up for them. We HAVE to be their voice. If we don't do it... who will?

A Bloggy Award


Karen, over at The Rocking Pony presented me with this award! Thanks Karen!!!

I now pass it on to Christina, Deb, Rhonda and Jennifer. Enjoy ladies!

Do you want to see my house?!


OK so it's not really MY house, but it's my most favorite house in the whole world (or at least in my city) and just to torture me, after living here for 4 years staring at this house, it's for sale. It's $2,195,000. Is that all? I just need to win that lottery... and it's MINE alllllll MINE! I can dream right?! haha

Click here for virtual tour

A contest...

So the Army Times is having a contest... I'm thinking about entering, but while I find it easy to say wonderful things about my kids, I don't find it so easy to say wonderful things about myself! haha So what do you all think? Waste of time, or should I go for it? If you were me, what would you say about me (in 500 words or less haha)? (Did that make sense?! LOL) The essay has to be in by Monday... nothing like short notice!

Here are the rules:

Could your favorite military mom use some recognition and $5,000 in
cash?

Operation Homefront and CincHouse.com have launched an essay contest,
open through March 31, for their inaugural Military Motherhood Award.
You can nominate your spouse, friend or yourself, describing why your nominee deserves the Military Motherhood Award.

Eligible are active-duty, National Guard and reserve moms; the spouses
of active or reserve component troops; mothers of service members, and
others. Nominees might have children, stepchildren, foster children, or
have other unique circumstances.

"This is a celebration of motherhood, and there aren't any hard and fast
rules about what constitutes an amazing mother," said Meredith Leyva,
founder of Operation Homefront and CinCHouse.com.

The winning mom will receive $5,000 cash and will be flown to Washington
for an awards ceremony May 8.

The essay section on the nomination form accepts up to 3,000 characters
- about 500 words.

Operation Homefront will select the top 20 nominations, and allow the
CinCHouse community of military wives and women in uniform to vote for
the top five. A panel of judges will select the overall winner.

Friday, March 28, 2008

How does she know?! (Another tooth tale)

OK there must be something in my water that's making my kids' teeth fall out! haha Kass lost a tooth today (picture to follow later)... that's 4 teeth in 8 days (in case anyone is keeping track). So anyway, Kassidy asked me how the tooth fairy knows that a tooth is under your pillow. I figure someone out there in the blogosphere must know! Anyone?!

Blast from the Past - A trip to the car

Every Friday I do a "Blast from the Past" post with a story or something that I've written B.B. (Before Blogging). It will help you all get to know us a little better and maybe even give you a laugh or two! :)

September 5, 2007
OK so I have four kids. Four kids is a lot by today's standards, but still, it's manageable. You would think that a mom with four kids, who can manage to get out of the house with all four clean, dressed, fed and mostly happy would be elated to only have 2 to get ready and out of the house for a change. It should be an easy task, right? And thus began my day.

Keeghan had his 4 month check up today. I had to take Kennedy to my mom's house beforehand so I had both kids ready just in time to make it to my mom's and then get to the pediatrician's office. I walk out the door holding Keeghan in one arm and holding Kennedy's hand with my other. The diaper bag and my purse are draped over each shoulder. We slowly walk down the front steps with Kennedy clutching my hand saying "One step... 'nother step... 'nother step". We're at the bottom and now we just have the walkway to walk down to get to the van. My little Miss Independent decides she doesn't want to hold my hand, she can do it herself! Still a little wobbly she falls, but catches herself. I try to grab her hand and say "Kennedy, hold Mommy's hand please." "NO, Mommy!" Keeghan is grunting as he squirms in my other arm and the diaper bag slips to the ground threatening to spill over. I get that picked up and Kennedy falls again, says "WOAH!" and stands back up. I plead with her, "Kennedy PLEASE hold my hand." "NO!!!" By this time Keeghan is really slipping and we still have 3 little steps to go. Kennedy walks into the grass, over the tree stumps, anywhere except the walkway with Keeghan and me. I try again to grab for Kennedy's hand when Keeghan decides he's had enough and pukes... everywhere!

Finally we get to the end of the walkway and I open Keeghan's door to get him in his seat and get the two of us cleaned up when Kennedy decides SHE wants to get in that side too... which is pretty much impossible. So I am trying to wipe the puke off and buckle Keeghan in as Kennedy tries to climb through my legs saying "I STUCK!!!!" I tell her she can't get in on this side, she has to go to her side. Have I mentioned she's three? She wants to get in on Keeghan's side and it doesn't matter if she doesn't fit. So Keeghan's screaming by this point because he's hot and irritated that the car is not moving yet and he's STILL not buckled and all of the sudden Kennedy disappears. OK mission one: Buckle Keeghan. Mission two: Find Kennedy. Mission three: Clean puke off shoulder. I get Keeghan (who is royally ticked off now) buckled in and turn around to find Kennedy only to see her *gasp* climbing the steps back up to our front door! AHHHHHHHH

I look at my clock shocked to see it's taken me 15 minutes to walk 20 feet to my car, run back to the door and grab Kennedy who is now yelling "NOOOOOO!!!! DOWN!!!! WALK!!!! NOOOOOOO MOMMY!!!!!!" Sure that a policeman is lurking ready to arrest me either for kidnapping or child abuse, I finally get her in the car and buckled next to her brother who is so mad he's hyperventilating. I jump in the driver seat and speed to my mom's (still looking out for that cop) all while using baby wipes to clean the puke off my shoulder, and hand a defeated Kennedy over to Grandma so I can race to Keeghan's appointment and all for what?....SHOTS!

For more Blasts from the Past, Click here!

Thursday, March 27, 2008

No Surgery Date Yet...

Hey everyone, 

I was hoping to be able to update with a surgery date, but I haven't heard from Shriners yet... it's a good thing I'm a patient person huh?! (Stop laughing.) 

Kennedy's counts at clinic were just great! Her platelets and hemoglobin were actually a little high... but I'll take high over low ANY day! 

The kids are having a good Spring Break. Kassidy had a great time at the Porter's. They took her out to dinner where I hear she ate her meal and then everyone else's. Kaylond was her little shadow and Kim made her slave away and wash her car (and clean out the fire place, right Kim?! hehe)... and she figured out that Kass doesn't know what Windex is... my secret is out! LOL 

While she was there, I took Kameron bowling. We had a really good time... I have to say though, I am a TERRIBLE bowler. I won't embarrass myself by posting my scores, but let's just say that next time, I'm asking for the bumpers! ;o) Then my mom met Kam and Keeghan and I for lunch (Kennedy was at school) and Kam conned me into buying him a new toy. (Because he doesn't have NEARLY enough already!) 

Last night my mom stayed with Kam, Kenn and Keeghan while I went to pick Kassidy up and then we (Kass, Kim and I) went to the Melting Pot. It was Kassidy's first time there... she wasn't too overly impressed with the cheese so I was kind of worried, but once the meat came out she was ALL over it! Then of course there was the chocolate... yum! I think we all gained about 5 pounds! When I win the lottery I'm going there at LEAST once a month! haha 

Today we have just laid around watching it rain and being lazy. We've been doing that a lot lately. I love it. 

Anyway, hopefully next time I update I will have a surgery date for you! There's some new stuff on my blog if you haven't been there in awhile. 

I am thankful for another month of good counts... praying for many many many more months to come!

Wednesday, March 26, 2008

Tuesday, March 25, 2008

The same thing?

So tonight Kameron and I were reading the story of the Garden of Eden when the snake talked Eve into eating the forbidden fruit. In the middle of the story Kam stopped reading and said, "Mommy! This is just like the time in your soap opera when Jack tricked Victor into signing the company over to him." Haha So glad he has something "real life" to compare it to! LOL

Sunday, March 23, 2008

Easter Pictures!


Happy Easter from the Special Ks!
Hello!

We pray you all had a wonderful Easter! Ours was nice, we woke up and the kids explored their Easter baskets and then we went to church, went to lunch and came home and they hunted for eggs. Then the 3 big kids watched a movie while Keeghan and I napped. Nice and relaxing!

I still haven't heard anything from Shriners as far as a surgery date, but maybe tomorrow... I'll let you know as soon as I know! Keeghan's staph spot has cleared up nicely! It's all healed over already, thank God!

Kennedy has a hem/onc appointment in the morning just to get her counts checked. Please pray all goes well there! I don't see why it wouldn't, she's been feeling great! She slept in until 10:30 today so I let her stay home from school and be lazy with the rest of us. I think she'll be ready to get out and go by morning.

The kids are on Spring Break this week so Kassidy is going to go with me tomorrow and then she will spend the night with Chad, Kim and Kaylond Porter (Angel Charlie's family). She is SO excited! On Wednesday afternoon I will pick her up and we will go to the Melting Pot for some mommy/daughter time. I have to think of something fun to do with Kameron on Wednesday since Kennedy will be in school and it will just be me, him and Keeghan. 

These pics are from Kennedy's Easter Egg hunt at school on Friday, then the rest are from this morning. (For you RSS readers, there's a slideshow here)

Saturday, March 22, 2008

Happy Easter



He is Risen! He is Risen, Indeed!
Wishing you and yours all the blessings the Father has for you this Easter.
May you know in your hearts His greatest Gift, His Son, Jesus.
Thank You, Lord, for Your never ending love and grace.
Thank You for the promise of Heaven and for everlasting life.

WEEP! A Kennedy conversation

For some unknown reason all my kids, as babies and toddlers, liked to play with diaper wipes (clean ones, of course). Kassidy and Kameron have outgrown it, thank goodness, but Kennedy and Keeghan just LOVE them! (And I buy them expensive toys WHY?!)

Keeghan can be throwing a royal FIT nooooo not MY baby and I give him a wipe and he instantly calms down and will play with it for a long time. Kennedy likes to clean with them. I have streaks from the wipes on my TV, the glass door in my entertainment center, and up and down my glass door.

Ever since Kennedy could talk she has called wipes "weeps". I'm not sure why exactly since she will say the I in "I love you" and "bite" correctly, but "weeps" it has always been. I thought maybe tonight I would correct this. Here's how our conversation went:

Kenn: I wanna weep?

Me: You want a wIpe?

Kenn: YEAH!!! A weep!

Me: Kennedy, can you say wIpe?

Kenn: Weep!!!

Me: Kennedy say I...

Kenn: Love you too!

Me: No Kenn, say I

Kenn: I

Me: wIIIIIIIIIIIIIpe!

Kenn: wEEEEEEEEEEp!

Me: *sigh*

Kenn: (holding out her hands) Gimme!

Me: Say wIpe

Kenn: Weep!

Me: (resigned) Here you go.

Kenn: YAY WEEP!!!!

And now she's using it as a blanket for her Groovy Girls. Another day, another battle lost.

Another day, another dollar...

Or three! Kameron lost ANOTHER tooth this morning! I knew it was loose, but when he woke up it was practically out. Since he had a soccer game today I had visions running through my head of soccer balls flying at his face, knocking his tooth out and him choking on it. (Dramatic, I know!) So... out it came. I'm thinking the tooth fairy is going to go broke. She brings 3 gold dollars per tooth... gas prices aren't the only thing that's inflated in the last 20 years!

Friday, March 21, 2008

HAPPY BIRTHDAY BRENT!!!


Brent, his girlfriend Ruth, and my kids in January


Today my little brother turns 22. Hard to believe... seems like just yesterday I was trying to mail him back to where he came from and telling everyone in my neighborhood that he was switched at birth and I really had a little sister out there somewhere. (Hmmm... maybe that WAS yesterday!! haha) Anyway, I hope you have a great birthday, Brent!
Love, your favorite sister and brother-in-law and your favorite nieces and nephews

Happy World Down Syndrome Day!!!

Photobucket


Today, March 21st, is World Down Syndrome Day. Today was chosen because when someone has Down syndrome they have an extra copy of the 21st Chromosome... so they have 3 instead of 2. Therefore, 3/21 was chosen for this very special day!! I wish everyone knew the joy, the wonder and the beauty of having someone in their lives with Down syndrome. I am so thankful we were chosen.

I was hoping I could update today with a surgery date, but I haven't heard from anyone at Shriners yet. We'll probably hear on Monday. Kennedy is doing well with her neck brace. She is such a trooper! I have attempted to get her to wear her glasses the last couple days... since she's supposed to have worn them every day for almost a year now haha... but she's not too fond of them. Maybe with time. I'll keep trying! 

I was also hoping so share lots of pictures with you tonight, but I haven't made myself sit down and edit them yet! SO that will have to wait! Here is one of Kennedy after her MRI at CHOP right after they fit her for the neck brace. She was still sleeping soundly, which made things easier for the neck brace guy, I'm sure!


I had to take Keeghan into the doctor yesterday... he has a staph infection of all things! I'm assuming he got it at Vandy when he was getting his tubes in, but who knows? His doctor lanced and drained it and we're putting antibiotic cream on it and it seems better today. Kennedy had a HORRIBLE time with staph a couple years ago so it always makes me nervous. 

Anyway, I promise to update again soon with pictures. I have SO many! Thank you for keeping Kennedy in your prayers!! Please continue to pray for our Vandy friends Erica, Riley and Cody. They all really need them right now!!

Also, King Julian's mom, Mimi, is putting out a call for prayer for our little friend Coleman (cp: ColemanScott). Coleman has Medulloblastoma and is 4 days post transplant and is feeling pretty yucky. Mimi is asking that at Noon tomorrow (Central time I think) that we stop what we're doing and say a little prayer for Coleman. Let's storm Heaven for him and pray that he will feel better soon and that this transplant will be the answer for his earthly cure! Please keep his mom and dad and his twin brother Caden in your prayers as well! Thanks so much!!

Happy World Down Syndrome Day and Happy Spring!!!

I am thankful for a warm sunny day and a fun dinner with the Porters!

Thursday, March 20, 2008

My snaggle tooth boy!

Kam lost his first top tooth tonight (he's already lost 2 bottom ones). OK, actually I pulled it out... but he came home and it was all crooked and I couldn't STAND it! LOL This is their first night of Spring Break so he and Kass are spending the night at my mom's house tonight so she gets the honor of being tooth fairy this time. Look how cute my guy is!



PS. I swear this is not the only shirt he owns... he just always seems to be wearing it when I take pictures! haha

Tuesday, March 18, 2008

HOME!!! And Kennedy update

HOME!!! YAY!!!

Well, our flight, like the rest of the time in PA, required a LOT of waiting! haha But we are home safely. Kennedy is still awake watching cartoons and trying to figure out how to balance herself with her neck brace on. She's getting it, slowly but surely.

My mom brought the kids into the airport so we saw them right after we passed through security. Keeghan got a HUGE smile on his face when he saw me, like "HEY! I remember you!" :) Kass and Kam said "What did you bring us?!" haha I actually did get them something from the airport, but by the time we got home they went right to bed and I forgot to give it to them! Oh well, tomorrow!

SO today at Shriners was another LONG day! We met the 2 surgeons who will be doing Kennedy's surgery (1 ortho and 1 neuro) and of course we got to meet Dr. Betz who will be in there as well. They were all REALLY great and answered all the questions I could remember to ask and told me to email them whenever I have more... which I'm sure I will!

SO as we already knew, her AOI is REALLY bad. The MRI yesterday proved there IS impingement on her spine and she also has some swelling around her spine, so it is only a matter of time before Kennedy would start displaying some symptoms of the instability such as tripping a lot and losing her balance when she walks. Fortunately this was caught early enough that no permanent damage has been done.

She most definitely needs surgery, so the 3 surgeons are trying to find a date where they can all be in there at once. We should get a surgery date in the next few days. They will be taking bone from her hip and then using either titanium plates, wires or pins to fuse her skull to her C1 and her C1 to her C2. This will fix her AOI and AAI. (The AAI is not too bad, but since they're in there they may as well fix it!) The surgery will be 6-8 hours and she will be in the ICU afterwards. Not sure how long they expect her to be in there. She will be in the hospital for about a week depending on how she does, but then we have to stay in the area for 2-3 weeks after we get out of the hospital. Frank will most likely be flying straight in and out of Philly now instead of coming home first. We are working on getting the other kids up there too so they can spend time with Daddy since this is the only time he'll get to come home this deployment.

The hardest part to take in of all of it is the fact that they're going to have to shave over half her head... just when her hair was coming back in!!! It's going to look silly to have a half shaved head so I'll probably take her in and have it all shaved off before we go up for the surgery. *sigh* I miss her hair!

Anyway, she'll be in the halo for 6 months and we'll be flying back and forth lots for post-op appointments. They are hoping some of the post-op stuff like CTs can be done at Vanderbilt so we won't have to fly up just for that. One of Kennedy's surgeons went to med school with Dr. Pearson at Vandy, so he's going to give him a call.

Until surgery Kennedy has to wear her neck brace at ALL times except when she's in the bath or eating. She didn't sleep very well last night with it on, so I'm hoping she'll get used to it soon.

Anyway, I have lots more to say and lots of pics to share, but I'm beat and Kenn just folded in half on the floor so that must mean it's bed time!

Until next time,
Renee

I am thankful for my mom who took great care of Kass and Kam and Keeghan and was there for me to call and vent.
I am thankful for Stephanie who was my hotel, my chauffeur, my handholder and my friend!
I am thankful for the 3 surgeons I met today and all they are doing for Kennedy.
I am thankful for the angel who sat next to me on the plane home. More on that tomorrow.

Monday, March 17, 2008

Our Day at CHOP

WOW what a day! 

Kennedy, my friend Stephanie and I left for the hospital at 8:00 this morning. We got to CHOP at 9 and they checked Kennedy in for her MRI and got us to the back rather quickly. Her MRI was scheduled for 11:00 so we were pretty pleased they were ahead of schedule. They started getting her ready and all the people came in to review her medical history with us and then they noticed she has ear tubes in, they asked me what kind they are. Uh I have NO idea! This, of course, was a problem! They said if there was any metal in the tubes they could not do the MRI. I told them there must not be because she just had an MRI about 2 weeks ago and she was fine. They said that THEY had to verify it, they couldn't just go on my word alone. (Because really, what do I know? haha) 

SO they called her ENT at Vandy who was on vacation (of course) but one of the nurses over there faxed over her records pertaining to the tubes and CHOP had never heard of those tubes before... so they had to call the manufacturer. They had NO idea so the docs at CHOP sat around trying to figure out what to do. 

In the meantime Kennedy was PERFECT! She watched some "Blah-Blah" (Spongebob) on my iPod, listened to her "song" (tape player), and played with her babies. She never asked for food but she did ask for water a few times. Poor kid! 

Several hours later they decided they would have to do an x-ray of her head to make sure there was no metal in there from her tubes (which I knew there wouldn't be!). Finally those results came back and they said they could do the MRI. YES! They took her back around 3:30 for that. 

The MRI went well, but once the radiologist read the results they insisted on a CT scan because of the severity of instability in her neck. Thank God she was still sedated so it was no big deal. So they did that and then she slept and slept... 

The doctor came in around 5:00 and said that if Kennedy were having the surgery done at CHOP we would not be going home, but since we're going to see Dr. Betz at Shriners tomorrow he would let us go... BUT she has to wear her neck brace 24/7. Someone from the brace shop came up and fitted her for a new brace, and this one is much better than the last one she had! 

So it turns out, according to the CHOP docs that Kennedy's AAI (between C1 and C2) is not so bad. The big instability lies between her skull and C1 (AOI). We knew the AOI was worse but he said the AAI alone would not warrant surgery. AAI in kids with Ds is common... AOI, not so much. But that's just keeping up with true Kennedy fashion! 

SO we finally had to wake Kenn up around 7:00 this evening so we could go home! She ate some crackers and drank some juice (her first food or liquid by mouth in 25 hours) and then we got to leave the hospital around 8:00. Talk about a LONG day! Stephanie hung in there with me all day and kept us company and helped with Kennedy! I'm so thankful for her! She didn't even laugh at me when I got teary eyed because the people at McDonalds didn't put mustard on my burger (twice)! Now THAT'S a good friend! LOL 

So tomorrow we will go to Shriners to meet with Dr. Betz and pray he will let us go home before surgery! It should be a fairly quick visit tomorrow and then we can do a little sight seeing and buy some presents for Kass, Kam and Keeghan. 

The kids are doing well with my mom, though I think Keeghan is driving her a little crazy! haha I can't wait to see them all tomorrow! Our flight leaves around 6:30PM. 

Please keep Frank in your prayers, he fell off a helicopter yesterday and hit his head really hard. He got checked out and he doesn't have a concussion but he has a horrible headache and a huge bump! It scared me a little! He assures me he's fine though, just in pain! They gave him tylenol, I hope it was extra strength at least! haha 

Anyway, Kennedy is sound asleep so I think I'm going to join her. Please pray all goes well tomorrow! 

Sunday, March 16, 2008

Deployment 2008 - Day 80

I can't believe Frank has been gone for 80 days already... that seems like so long! I wish we were still counting down the days until our Make-A-Wish trip, but we are still looking forward to him being home for a bit... even if it IS for Kennedy's surgery. The kids miss him so much!! I miss him too of course, but we get to talk a lot online so I feel like he's still here... he just can't get me ice cream at 10pm anymore! haha

Anyway, he's still doing well there, ready to come home for a bit, but he loves what he does, and I love him for that!! Keep him and all of the men and women over there with him in your prayers! I'll try to post some more pics on the next update!!

Here in Philly!

Hi everyone, 
We are safely in PA! My friend Stephanie picked us up from the airport and we have just been hanging out tonight while Kennedy and her girls played. She has a little one with Down syndrome too, and it's so cute to see them together! I have pictures (of course) that I will post eventually... 

Tomorrow is Kennedy's MRI. We have to be at CHOP at 9:30 and her MRI is at 11:00, then after that's over and she wakes up we will see if we can still get in at Shriners. If not, we will do that appointment on Tuesday. 

Kennedy really enjoyed the plane trip. It wasn't her first, but her last one was when she was just over a year old so I'm sure she doesn't remember it. She did NOT like it when the plane flew into a cloud... she'd say, "Oh no! Whahappen?!" (What happened?!) and then once she could see the blue sky again she'd say, "OK that's betta!" (better). Besides that though she had a blast. She let her Groovy Girls look out the window and then she watched Spongebob on my iPod for awhile. She wasn't too fond of the whole landing process, but then again, neither was I! haha I'm glad she enjoyed it overall since we're going to be flying up here a lot in the next year! 

OK I will update tomorrow as soon as I can, thank you all so much for praying! Please pray for our friend Austin (cp: AustinBickford) as he goes in for scans tomorrow to make sure he is still cancer free! 

I am thankful for a good trip and great friends!

We are off!!

OK! Today is the day... Kennedy and I are all packed for PA. I talked to her yesterday about going on an airplane and she's VERY excited! She went upstairs and told Kassidy and Kameron "I flyin!" I think she's going to enjoy it! I bought her a new Groovy Girl for the occasion too... since she doesn't have nearly enough already ;). I managed to fit all of our stuff into carry ons so hopefully that will make things easier... or harder depending on how you look at it! haha I hate waiting for luggage!

Kass, Kam and Keeghan are all packed to go to my mom's house. This will be the first time I'll be away from Keeghan overnight. It makes me sad! Last night he and I stayed up late and cuddled. He was in such a good mood, too! Then he woke up at 4am and wanted to play... haha have fun Grandma! I know they'll all have a lot of fun at my mom's house!

I am taking my laptop with me... of course! So I'll be able to update from there, I'm sure. Until then, take Sunday off and don't fill up my google reader! haha Just kidding! I'll catch up with you all eventually!

Saturday, March 15, 2008

A Pair of Shoes

A Pair of Shoes
Author Unknown

I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable shoes.
I hate my shoes.
Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step.
Yet, I continue to wear them.
I get funny looks wearing these shoes.
I can tell in others eyes that they are glad they are my shoes and not theirs.
They never talk about my shoes.
To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.
I now realize that I am not the only one who wears these shoes.
There are many pairs in this world.
Some women ache daily as they try and walk in them.
Some have learned how to walk in them so they don’t hurt quite as much.
Some have worn the shoes so long that days will go by before they think about how much they hurt.
No woman deserves to wear these shoes.
Yet, because of these shoes I am a stronger woman.
These shoes have given me the strength to face anything.
They have made me who I am.
I will forever walk in the shoes of a woman who has a child with cancer.

Friday, March 14, 2008

Blast from the Past - Kennedy's 1st Birthday Pictures

Every Friday I do a "Blast from the Past" post with a story or something that I've written B.B. (Before Blogging). It will help you all get to know us a little better and maybe even give you a laugh or two! :)

These are Kennedy's 1st Birthday Pictures from 2005... doesn't she look like a little doll? All pictures copyright Beverly Parker Photography.



For more Blasts from the Past, Click Here!

Another Kennedy update

OK... my nerves are officially shot, so no one call me because every time my phone rings, I jump! haha Just kidding.

SO after spending HOURS on the phone today with Shriners, CHOP, our insurance, our pediatrician here in town, and Vanderbilt, we are all set. I think. Yes, it WILL work out!

Kennedy and I fly into Philly a little after 2PM on Sunday. She'll be NPO (nothing by mouth) after midnight, then Monday morning we have to be at CHOP at 9:30 for an MRI at 11:00. Tricare has already approved it and the authorization has been faxed! I really thought THAT was going to be our biggest hang up, but thanks to our wonderful ped she got it pushed through in less than 5 hours! Amazing! I guess now I won't win the lottery... bummer!

We may not be able to see Dr. Betz on Monday afternoon so I called the Nashville Shriners, who are paying for our flight, and they got our flight home changed to Tuesday evening so we now have the option of seeing Dr. Betz on Tuesday (and that gives us an extra day to eat Philly Cheesesteak Sandwiches! haha). The only bummer is I'm going to have to reschedule Kennedy's hem/onc appointment at Vandy on Tuesday, but I'm SURE her counts are fine, so no worries there!

I have to say, barring a few crazy phone calls today asking for practically impossible requests, it's been truly amazing how fast this has all pushed through for Kennedy's MRI and how willing people are to accomodate her! Both Shriners and CHOP have been totally flexible and willing to change schedules and squeeze her in just to get this DONE already! I'm so thankful.

Now here's my next (and hopefully last) dilema. Shriners needs Kennedy's birth certificate. I can find Kass and Kam's but not hers. I am about to go on a hunt. Pray for me. LOL

Until next time,
Renee

PS. A few of you have asked about Kennedy's neck brace and I keep forgetting to answer! We did get a brace... they measured her for it and everything... and it's HUGE! It not only makes her miserable but she can still move her head every which way and it's really not offering any stabilization at all. We just need to get to Philly in one piece and we'll be good to go!

(Blast from the Past will be posted later tonight!)

Thursday, March 13, 2008

Keeghan and Kennedy update

Well, we're home. They weren't able to get Kennedy in for the MRI. Dr. Pearson's nurse felt bad that we were just sitting there with a starving Kennedy so she called down and asked if they even thought it was possible and they said they were overbooked as it was for MRI so no chance. *sigh*

BUT!!! We have a plan B. One of my friends in Philly called the Down syndrome clinic at CHOP (Children's Hospital of Pennsylvania) to see if THEY could possibly do the MRI there on Monday morning. They said it was possible so we are scrambling to get them information...

BUT the only way this will work is if we can move Kennedy's appt with Dr. Betz to later in the day. It's set for 10:30 right now and there is no way we can get the MRI done and get from CHOP to Shriners by 10:30...

SO I'm waiting on a call back from Shriners to see if we can move the appointment and then Dr. Betz needs to fax the orders to CHOP and THENNNNNN (this will be the hardest part I think) our insurance needs to approve it (or I need to win the lottery by Monday! haha).

SO pray this all works out... changing the appointment time, getting the right info from Shriners to CHOP and getting insurance to behave. Can we do it?! With God we can!!

Keeghan is doing just great. His surgery went well, he threw up a few times and came home in hospital jammies but he's happy and playing right now!

Until next time,
Renee

I am thankful for Plan B.

Out of Surgery...

Hi everyone 

Keeghan is out of surgery. Everything went well. He threw up in recovery, but he seems fine now and is in good spirits. So now we sit and wait to see if Kennedy can get in for her MRI. They have no openings so someone will have to cancel or not show up... Pray for that! She is asking for French fries and ice cream LOL. Poor kid! I will update again when I can. Thanks so much for praying.  

I am thankful Keeghan has tubes!

Wednesday, March 12, 2008

Pray for Keeghan



Tomorrow morning we leave at 5am to take Keeghan to get his ear tubes put in. I had to take him into the ped's office today for yet another ear infection. They gave him a shot of rocephin today in hopes that he'll be fever free by morning! Pray that he is!! Pray that the surgery goes well and that he will have NO MORE ear infections!!!

Kennedy will also be going with me tomorrow to be on standby for her MRI. Pray they can get her in! If it gets done we will fly out Sunday night to Pennsylvania to meet with her surgeon and get a surgery date. Then we can work on getting Frank home for a few days.

I'm going to have 2 very hungry babies on my hands so pray for me too! LOL I have to be the big mean mama!

Finally an update!

Wow 2 updates in one afternoon! haha 
Sorry for filling up your inbox!! 

SO here's the latest. I decided to call Jan, the patient advocate at Vandy. Let me tell you, she has listened to me whine and complain since 2004... and she still answers my calls! That says a lot! haha She made a bunch of phone calls for me and came back with the news that anesthesia WILL do the MRI... BUT (there's always a but, isn't there?) they are booked out for 2-4 months. *sigh* SO I was stressed out thinking I have to call Shriners and cancel our flight and this thing can't WAIT 2-4 months... stress stress stress. 

So I just stopped and prayed. There was nothing else to do but hand this over to God and wait. So I prayed that everything would be done in His timing and that Kennedy would be kept safe until this MRI could be done. I got home and sat down to call Shriners and cancel her appointment and our flight... when my phone rang. 

Dr. Pearson's (neurosurgeon at Vandy) nurse Melissa called and said she talked to another radiologist who MAY be able to work her in tomorrow before 4:00 IF we can be on standby and ready to hop in the car when she calls tomorrow. I told her I can do one better than that since Keeghan is having surgery tomorrow I could have Kennedy there at 6am and we can hang out all day if need be. 

SO tomorrow at 5am Kennedy, Keeghan and I will head to Vandy. My mom will be here with Kass and Kam and get them over to my next door neighbor's house around 7:30 and then she will head into Vandy to be with me. I can't take Kennedy back to recovery with me, so she can hang out with Kenn while I'm back there. Melissa even offered to let Kennedy come play with her! Then if Keeghan wakes up ok we will all hang out and PRAY they call us for Kennedy, or if Keeghan wakes up and is not doing too well my mom will go home with him and I'll stay with Kenn... and pray they can get her in! 

SOOOO pray pray pray that this works out! I have such a feeling of relief now that this is all going to be ok! I will update from my Ipod tomorrow at some point if I can. PLEASE keep praying for Riley too! 


I am thankful this is finally happening!!

So many emotions!

OK a few things today... frustration, sadness and anxiousness. Fun day right?! 

Keeghan's ear tube surgery is tomorrow, so guess what he's doing today? Spiking a fever, of course!! I have a call in to his ped to see if maybe a shot of rocephin might just knock this out. I'm SURE he has an ear infection and I'm also sure they won't do the surgery tomorrow if he has a fever! UGH PLEASE pray his fever goes away and we can get this done. Poor baby needs relief! 

As for Kennedy, it looks like we are going to have to delay our trip to Shriners. I can't believe it's so hard to get this MRI scheduled! I'm really, really frustrated! Dr. Betz (from Shriners) talked to one of the radiologists yesterday and he (the radiologist) was supposed to call me today, but here we sit at 2:00 and nothing! They can't do the MRI at Shriners because they only do sedated MRIs on Wednesdays and are booked for months in advance... so we have to postpone Monday's appointment in PA which will make it longer before we find out a surgery date which is going to make Frank's COs SO not happy because they're trying to get him home for this surgery but they NEED a date (understandably). I'm ready to pull my hair out! AND I'm thinking that the Nashville Shriners are going to be none to happy about the plane tickets they bought for Kennedy and me that we're not going to be using right away. *sigh* Just pray this all falls into place. Ideally we can get Kennedy's MRI done on Friday so we can still fly out on Sunday for her appt in PA on Monday. 

Now for the sad news, our little friend Smiley Riley has relapsed with his Leukemia. Riley is one of Kennedy's Vanderbilt friends, but the Military moved them to Nebraska a few months ago. We miss them lots and know they must be scared being away from all Riley's doctors. Riley has been through 2 bone marrow transplants already so he will go through some chemo and then get a stem cell boost. PLEASE pray this will do the trick for his little body! 


Kennedy & Riley at Vandy

Thanks for praying for all these things!

I am thankful for prayer... how would we get through our day without it.

Wordless Wednesday - Caption please?

Tuesday, March 11, 2008

And not to be outdone by her brother...

My son!

Kameron is home from school today with strep. He's not FEELING sick... no fever, no pain, just a very positive strep test that means he has to stay home today. He's bored. He did his homework, played with Kennedy, tortured played with Keeghan... and now... he's bored bored bored. At least it makes him appreciate school, right?!

So what do we do when we're bored? Pull out the camera... of course!

My Character Kid


Every month my kids' school picks a "Character Kid" who they recognize for showing great character traits. This month's trait was Trustworthiness and it was awarded to Kassidy! She got in the car and said it was the "Best day ever!" She went on to say she only beat another boy by a couple points and she felt bad for him. She said she was sad and didn't want to tell him, "ha-ha!" LOL I told her it was GOOD she didn't want to say that to him because no one likes sore winners! LOL Anyway, here's my girl with her certificate! I'm so proud of her!

Monday, March 10, 2008

Not much of an update...

Hey everyone, 
Sorry there have been no updates in a few days, I haven't really had much to say... imagine that! 

We're STILL waiting on anesthesia to say they will do Kennedy's MRI. Hopefully SOON! Kameron is home with strep throat and an ear infection. He gets to go back to school on Wednesday... he was SO bored today! Keeghan's ear tube surgery is Thursday, please pray it goes well! On Sunday Kennedy and I fly out to Shriners for her consult with Dr. Betz. We will also schedule her surgery on this day. So, busy week! But what else is new?! haha 

Tonight I got to go to dinner with Mary Lee, Ryan Carrigan's mom and a group of other moms who have kids with special needs. This was a mom's night out at The Melting Pot. We had a really good time and it was nice to get out for a bit where I didn't have to wipe noses, feed someone dinner or tell anyone to stop fighting! haha My mom came to my house and stayed with the kids and they are all sound asleep... which is looking more and more like a good idea! Off to bed! 

I will update again as soon as we hear about Kennedy's MRI. Please remember Kayla's family in your prayers! 

I am thankful for Mom's Night Out... and chocolate!

Saturday, March 8, 2008

Don't Forget!!!!


Don't forget to set your clocks one hour forward before you go to bed tonight! If you don't, you'll be late for church (or would you be early? I can't remember! LOL)!! I am SO excited for it to be lighter later! Wooohoooo!!!

Owed to a Spell Chequer

Eye halve a spelling chequer
It came with my pea sea
It plane lee marques four my revue
Miss steaks aye ken knot sea

Eye ran this poem threw it
Yule bee reel glad two no
It's vary polished in it's weigh
My chequer tolled me sew

A checker is a bless sing,
It freeze yew lodes of thyme
It helps me right awl stiles two reed
And aides mi when aye rime

Each frays come posed up on my screen
Eye trussed to be a joule
The chequer poured o'er every word
To cheque sum spelling rule

To rite with care is quite a feet
Of witch won should be proud
And wee mussed dew the best wee can
Sew flaws are knot aloud

And now bee cause my spelling
Is checked with such grate flair
Their are know faults with in my cite
Of nun eye am a wear

Now spelling does knot phase me
It does knot bring a tier
My pay purrs awl due glad den
With wrapped word's fare as hear

That's why aye brake in two averse
My righting wants too pleas
Sow now ewe sea wye aye dew prays
Such soft wear for pea seas

Friday, March 7, 2008

Blast from the Past - I am 25

Every Friday I do a "Blast from the Past" post with a story or something that I've written B.B. (Before Blogging). It will help you all get to know us a little better and maybe even give you a laugh or two! :) I figured since I had my birthday this week, this essay is appropriate.

March 9, 2004

Last week I turned 25, a quarter of a century old. You would think that at a milestone such as this God would impart to me some great divine wisdom; that He would let me in on a little secret about life that I had not known when I was 24 years 364 days old. He didn't.

I woke up on my 25th Birthday and looked in the mirror expecting to be wiser, more mature, more respected, and you know what I saw? Crow's feet. I swear they weren't there the day before. Could this be my birthday present? Hmm. As I stood there staring at myself I thought about everything the last 25 years have brought, everything I've gone through in life, everything I've accomplished, everything who makes me who I am today.

Here's my conclusion:

I am a Child of God. This one was easy. It's a choice I made for my life a long time ago; a choice that has been hard at times, a choice that others have looked down on me for. Yet it has been my best choice, my most important choice. I know that without Him I would not be the person I am today… faults and all. He has been my Lord, my Savior, my Father, my Best Friend, and at times when I couldn't find anyone but myself to blame, my worst enemy. I disobey Him, ignore Him, brush Him off and yet He's still there when I mess up my life so badly that all I can do is beg for His mercy. He's never-failing, never-ending, always loving and always gracious and I am amazed every day that He puts up with me. Being His daughter is the biggest part of who I am.

I am a daughter. Having a daughter of my own has given me a new appreciation of my own mother. I think I owe her a huge apology... or 10 or 20. If you were to ask my mother about my childhood she would probably regretfully say she worked the entire time. My memories of my mother are made up of the times that she took off work. She went with me to every field trip. She never missed a school play or speech meet or spelling bee. She stayed home with me when I was sick. I would sleep on the couch and she would be typing away on the computer next to me, trying to keep up with her work. The soft clicking of the keyboard echoed through my dreams. My mother was there when it counted, she taught me to be selfless and put others first. She taught me to be nurturing and loving. She taught me to be a mom.

I am a wife. Sometimes this is still hard for me to imagine. I can't be married! I swear I just graduated high school like yesterday. I've been married for 5 years now and I'm still trying to figure out what being a wife means. The general role of a wife is cooking, cleaning and staying home to raise the kids. Of course if those women lib people heard me they'd probably run me over with their car for saying that. But I digress. I DO cook… sometimes. Do I like to cook? Sometimes. Thank God for a husband who enjoys cooking, because I'd much rather eat his creations than my own. I DO clean… sometimes. Before I got married a friend had to show me what all the different cleaners were used for. Duh. I'm getting better though. I DO stay home to raise my kids. This is my favorite part, even when they drive me crazy. Being a wife is more than this though. It's about loving your husband so much you are willing to wash his stinky socks without gagging; willing to kiss him first thing in the morning before he's brushed his teeth; willing to trust him to take care of his family, even when times get tough. Being a wife means having someone there to take care of you when you're sick, having someone to laugh at your jokes, having someone to cry with you when life gets hard. Being a wife means choosing to love your husband even when you don't FEEL like loving him; choosing to love him even when you want to throw him out the window; choosing to love him even when you wonder in your head if he really loves you back (but knowing in your heart that he always will). I love being a wife… most of the time.

I am a mom. I have 2 small children who wake me up in the middle of the night for a drink of water, or to chase monsters out from their closet or whatever else their little brains can conjure up as an excuse for interrupting my dream. Kids are awesome. They make me laugh all the time… almost as much as I find myself saying "Stop fighting!" They are messy, and expensive, but they're so darn cute and so much fun to play with. They find miracles in the smallest things, like the squirrels who live in our tree. They make me look at life through their eyes, and I love it. For just a few minutes every day I get to be a child again and re-experience things for the first time. They make me appreciate my Lord, my husband, myself and… bedtime. Shhh.

I am a home. Until May my belly is a home for our youngest child. She reminds me of this constantly. Apparently my ribs make her uncomfortable as she is trying to push them out of my body completely. I keep telling her this isn't possible. She is by far my most active child already. She moves from the moment I wake up to the moment I go to sleep, and probably beyond that. I love it. I love that she has been invading my body for the last 30 weeks growing and becoming strong so she can come out and defend herself against her big brother. Good thing she also has a big sister to help. I already miss being pregnant and I still have 10 weeks to go. I know, I'm nuts.

So in 25 years this is what I've become. A Child of God, a daughter, a wife, a mother and a home. Not bad. I could go on and on I'm sure but these are the important things, the things that shape my life; and these are the things I love. As far as divine wisdom and respect goes, a good friend told me just the other day that you earn that when you turn 30. Since she will get there LONG before me, I'll just let her tell me about it!

For more Blasts from the Past, Click Here

Another Angel gone too soon


Kayla Kristine Cantrell
January 2, 1989 - March 7, 2008

One of our Vanderbilt friends, Kayla Cantrell, won her fight with Ewing's Sarcoma today and went safely into the arms of Jesus. Kayla turned 19 years old in January and decided last month to stop the treatment that was making her so sick and spend her days with her family at home. While knowing that she is finally cancer free and out of pain offers some comfort, my heart just breaks for this amazing family. Please keep Kayla's parents Jimmy & Lyn and her sisters, Amanda, Kierston, and Schyler in your prayers as they face their lives without Kayla in it. You can click on her name to go to her page and offer support to her family. I know it would mean the world to them.

Please continue to pray for the rest of our Vanderbilt friends as well... you can find a list on the left side of this blog near the bottom.

Children's Miracle Network... take 2...

OK so I didn't go after all! I walked out of my house and we were having an ice shower that turned into snow... lots and lots of snow. As a California girl I'm scared to drive in ANY amount of snow... and I know all the seasoned Tennessee snow drivers appreciated me staying OFF the roads today! haha The kids' school closed early today as well so I am glad I stayed here... of course now it's not snowing at all! HA! But it's supposed to start again soon. Anyway, I'm sure CMN and Vandy raised LOTS of money today, I hope I get an opportunity to help at the next one!

Children's Miracle Network


If you're in the Middle Tennessee area, I am going to be on TV at some point today. Children's Miracle Network is holding a telethon for Vanderbilt Children's hospital. I will be answering phones and at some point doing an interveiw. Not too sure what channel it's on, but if you find it, look for me! It's also on the radio... 107.5 or you can listen online at 1075theriver.com. If you feel led, please donate! No amount is too small and it benefits wonderful kids who spend much of their lives in the hospital, like Kennedy!

Wednesday, March 5, 2008

This N That...

Thank you for all the birthday wishes! We had a very low key day today which is always nice. This weekend my mom and the kids and I will go to dinner in Nashville. 

Still no word on the MRI... turns out the anesthesia team doesn't want to sedate her because it's too dangerous... thing is, it's IV sedation and the risk would be with intubation... of course if something went wrong they would have to intubate so that's probably what they're thinking, but Dr. Betz needs this MRI done! SO... here I wait for them to work it out. He did fax us a prescription for the neck brace so I took her to get fitted for that yesterday and we should have it by tomorrow or Friday. 

I guess that's about it on this end. Keeghan's 9 month pics are posted on my blog. (I know he's 10 months old... we had trouble getting them scheduled! haha) He didn't really want to cooperate... smile... look at the camera... or do ANYTHING we wanted him to... LOL but she still got some cute shots. 

I'll update again when we know more. 

I am thankful for another birthday... even if it does mean I'm one year older! ;o)

Wordless Wednesday - Keeghan Joel 9 months old


Copyright Jamie Wright Photography

Tuesday, March 4, 2008

To tell the truth...

Tomorrow I turn 27, 28, 29. No, really. I'm not one of those people who say I'm 29 when I'm really 38... at least not this year! I have a funny feeling that whenever I say that I'm 29 this year people won't believe me... but I guess they shouldn't have asked me my age in the first place huh?!

My birthday has always been one of my favorite days of the year. When I was a child I would start counting down 100 days in advance. I used to write it on EVERY paper in school, "99 days until my birthday!" I don't think one teacher ever forgot! haha I would always go to Red Lobster for my birthday dinner and order crab legs. The last few years I've changed over to Outback for rack of lamb. This year, I'm going to McDonald's! I'm trying to think of something different, being that it's my last year in my 20s and all.

Since having kids, while I still look forward to my birthday, I look forward to their birthdays even more and those silly kids don't even know when my birthday is! No more presents for them! Kameron said that he wants to buy me the craft light cutter for my birthday... but I have to give him money first because the tooth fairy doesn't pay him enough. At three bucks a tooth, they should have seen what I got as a child! So I told him he better start pulling more teeth out! ;o) Kassidy wants to buy me the new Miley Cyrus CD... I'm thinking SHE would get more use out of that than me! I figure as long as I get 4 great big hugs and kisses and maybe get sung to I will have all I need and more from them.

Now my husband... a few days ago he confessed he forgot to send me a card... but I told him it's OK because he can make it up to me when I turn 29 again next year. I really AM 29... I think.

She has her father's sense of humor

Q: What can be frozen without putting it in the freezer?

A: Your brain

-Kassidy Garcia
March 4, 2008

Monday, March 3, 2008

Planning for Philly...

Hey everyone, 

So the process of this surgery is officially started. On March 16th Kennedy and I will fly out of Nashville to Pennsylvania. We will meet with Dr. Betz on the 17th and fly home that night. Shriner's is covering our plane tickets, but they said we'd have to cover hotel... fortunately my friend Stephanie opened her home to us so we don't have to worry about that either! (She also promised to take us to get a Philly Cheesesteak Sandwich! haha) Thanks Steph!! 

We're still waiting to find out when her next MRI is. I know that Dr. Betz wanted it done this week, but I called Vandy about the MRI and neck brace today and they had no idea what I was talking about! LOL SO they're going to talk to Dr. Pearson and get back to me. 

Kennedy's doing well and feeling great. She had a good day at school today and has been playing with Kass and Kam all evening. Right now she and Keeghan are standing RIGHT in front of the TV (I know mom, they're too close) watching Blues Clues and cracking up. I'm not really sure what is so funny, but something silly must be going on. 

This morning I showed the kids what Kennedy's halo would look like. I didn't think it affected them much but I got a phone call from Kassidy's teacher tonight asking if everything was ok because Kassidy cried several times during school today. When her teacher asked her what was wrong she said she was just tired. Maybe the halo got to her more than I thought... I know it gets to me when I think about it too much. I tried to talk to Kass about it tonight but she insisted she was just tired... Anyway, if you think about it say a quick prayer for her and Kameron. It has to be so scary for them seeing their little sister go through so much and sometimes it's hard to get them to talk. 

Anyway, I guess that's it, I just wanted to let you know about the appointment in Philly. I'm a little nervous about flying... I've done it several times, but it's been awhile and Kennedy definitely doesn't remember her last plane trip so I'm hoping she won't be scared! I'll take pics... of course! 

I am thankful everything is falling into place, even though the reality of what's about to happen is NOT fun.

Easter

This is really interesting! Sorry my blog hasn't been so active, I'm just way behind on everything these days!

Easter this year is: Sunday March 23, 2008

As you may know, Easter is always the first Sunday after the first full moon after the Spring Equinox (which is March 20).

This dating of Easter is based on the lunar calendar that Hebrew people used to identify Passover, which is why it moves around on our Roman calendar.

Based on the above, Easter can actually be one day earlier (March 22) but that is pretty rare. This year is the earliest Easter any of us will ever see the rest of our lives! And only the most elderly of our population have ever seen it this early (95 years old or above!). And none of us have ever, or will ever, see it a day earlier! Here's the facts:

1. The next time Easter will be this early (March 23) will be the year 2228 (220 years from now). The last time it was this early was 1913 (so if you're 95 or older, you are the only ones that were around for that!).

2. The next time it will be a day earlier, March 22, will be in the year 2285 (277 years from now). The last time it was on March 22 was 1818. So, no one alive today has or will ever see it any earlier than this year!

Saturday, March 1, 2008

More Kennedy surgery stuff

Hey everyone,

Sorry for the lack of updates, I didn't have too much to say and then we went out of town on Friday and just got home tonight. We (my mom and the kids and I) went to a retreat for some of the Vanderbilt families who have kids with cancer... it's actually still going on, but we skipped out a little early... Kameron doesn't do too well sleeping in new places sometimes so last night was hard for him. We had a great time there though, the kids made new friends and got nice a dirty! (Those of you who know me well know that I'm cringing about that part! haha)

First, let's talk about Keeghan. He FINALLY had his ENT appointment on Friday. They did a hearing test which he failed. I'm not too surprised about that though since he still had a ton of fluid in his ears. He will be getting tubes on March 13th at Vandy. SO can't wait for that!! They tried to tell me all about the ear tubes until I mentioned my other 3 kids have them already and then they tried to tell me how to get to the surgery floor haha. Yep, got that covered! LOL Anyway, I am looking forward to some relief for my little guy. Speaking of which, he is 10 months old today! Doesn't seem possible!

So onto Kennedy... I have been talking more with the doctor from Shriner's in PA this weekend and we have decided to do her surgery up there. They have the latest and greatest equipment and techniques for spine surgery that Vanderbilt doesn't have yet and well, he's one of the top spine surgeons in the country! SO I just feel like if the BEST is willing and available... we should take it! Kennedy will still be followed some by Dr. Pearson at Vanderbilt. The two doctors have talked and agree this is the best course for her. I am confident she is in fabulous hands on both ends!

So what's next? The first step is going to be another MRI... Dr. Betz (in PA) wants to get a different view than the last MRI showed so he has no question in what he's dealing with. I will be calling Vandy on Monday to set this up. He also wants Kennedy in a neck brace until surgery, at least when she is in the car or out on the play ground or in any situation where she could possibly be injured. We don't need any "catastrophic events"!

I will be calling Shriner's next week to start the application process. Dr. Betz said we should have no out of pocket expense for the flights to PA or the surgery or hospital stay... so we'll probably just need to pay for food and stuff. We will then fly to PA to meet with him so he can see Kennedy and then about a month later she will have surgery. Dr. Betz thinks that Frank REALLY needs to be here for the surgery so when a date is decided we will work on that as well.

After surgery she will be in the hospital for about a week and then we can fly home. She WILL most likely be in a halo and it will be for 6 months (this just makes me so sad!)... we will then go back to PA at the 3 month, 6 month and 1 year mark for check ups. In between those check ups Dr. Pearson will be available for us.

Another sad thing is that we have to delay Kennedy's Make-A-Wish trip for a whole YEAR! SOOO we are now shooting for NEXT May... it will be right around Keeghan's 2nd and Kennedy's 5th birthdays. *sigh* BUT better safe than sorry... Dr. Betz just wants to make sure that Kennedy will enjoy her trip to the fullest, and we do too! We can't WAIT to get there!!!

Anyway, I guess that is it for now. I will post when I know when her MRI is and of course post pics of her in her neck brace... hopefully she won't hate it too much!

Until next time,
Renee

I am thankful for doctors who look out for the best interest of the patients, even if it means flying them to another state!