Wednesday, April 30, 2008

Do you remember?!

Today has been a long, long day... I'm tired, I'm frustrated, I'm a little angry... did I mention I'm tired? (Or as my friend Jennifer says, I'm shopworn.) So... I'm going to stray from my usual positive self and I'm going to vent. If you don't want to hear it, I don't blame you. I'm going to whine and moan... so there's my disclaimer. Don't say I didn't warn you! HA!

SO remember the spine surgery Kennedy is supposed to have? The one we found out about over 2 months ago? The one that they said had to be done SOON because if we were to get into a car accident or she were to injure her neck any other way it would be a "catastrophic event"? The one that should have already been done but we seem to keep hitting road blocks and I keep having to jump through hoops to get everything done for Shriners? The one that the Army is so graciously bringing my husband home for and has been so super supportive over? Yeah. That surgery.

Remember when I had to fight with Vanderbilt so they could go through ALL of Kennedy's HUNDREDS of pages of medical records so they could mail certain specific parts of said records up to Shriners to appease anesthesia who didn't want to sedate her because of the defect in her neck even though she's been sedated over 30 times already with no problems? (Remember when I wrote the longest run-on sentence in history? I hope so, because you just read it.) Remember when I called and called to make sure those 240 pages of medical records actually MADE it to the right people? Remember when anesthesia READ those medical records? (Me neither, I was just asking.)

Remember just last week when anesthesia said that ALL they needed to set Kennedy's surgery date was a clearance from hemonc? Remember when they lied? No? Well... let me tell you about it.

So today I get an email from Shriners saying that not only do I need to get the hemonc clearance faxed, I also have to get clearance from cardiology and pulmonology. Hmmm Remember the last time she went to pulmonology? You don't? Maybe that's because she has never gone to one! Hmmm Remember when YOUR child had surgery and THEY had to see a pulminologist? No? Apparently EVERYONE has to before they can be sedated. Everyone. Remember the last time Kennedy went to cardiology? Me neither. It's been THAT long. Remember that "ALL Down's kids have heart issues"?!?! Seriously?! (Oh, sorry, that was a different post.) Apparently Kennedy is the only child with Down syndrome (and she is NOT a "Down's kid" for the record) EVER who is not followed by a cardiologist. Wow.

Remember how long it takes to get a new patient into a clinic at Vanderbilt? Especially if they are not sick and have no issues pertaining to the specialty? They can see her in... oh... about 9 months. Now remember those records? Those 240 pages of records that are sitting with anesthesia at Shriners? You remember! Well... somewhere in those 240 pages (that they said they read in about 30 minutes) sits a copy of Kennedy's latest EKG... it was done because of the chemo she was on... you think that would QUALIFY as a release from cardio?! Hmmm?! No.

Remember the day that I cried for 3 hours straight because I was SO tired of hunting down records and making appointments and jumping through hoops and trying to be everything to everyone just to get this stupid surgery done? Remember when I screamed because I've been asked for the 100th time in the last 2 months to fax something from my non-existent fax machine? Remember when I curled up into a little ball and cried every time I saw Shriners on my caller ID? Remember when they stopped answering or returning my phone calls? Remember that migraine I got the last day of April? Remember when I said we should just forget about this stupid surgery and just let Kennedy wear the neck brace for the rest of her life? You don't remember? You might... Very soon... you might.

Last chance!

Today is the last chance to sign up for my 200th post giveaway! The winner will be chosen tomorrow!!!

Wordless Wednesday - Spring has Sprung!!


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Tuesday, April 29, 2008

YAY!!!!



Still in Remission!!!


Kennedy is still having fevers and feeling yucky so we'll deal with that next, but at least we know it's not Leukemia! Onto scheduling her spine surgery. More details as I know them!

Bath time pictures!

Well, I wish I had something interesting to post... but I don't! STILL no word from Kennedy's doctor. I've emailed her, so maybe we'll hear this afternoon... right?! In the meantime, I leave you with pictures... a small consolation prize! These are from bath time a couple weeks ago. (For you RSS readers, there's a slide show here.)


Monday, April 28, 2008

Another Character Kid!

Remember this post when Kassidy was awarded "Character Kid" at school for Trustworthiness? Well, this month it was Kameron's turn! He got the Character Kid award for Fairness! I couldn't be more proud of my little guy!! He was SO proud of himself too! :) My kids rock!

Monday Moment for Down Syndrome - The Creed

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

The Creed of Babies with Down Syndrome

My face may be different
But my feelings the same
I laugh and I cry
And I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above
To Him I'm no different
His love knows no bounds
It's those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I've chosen
Will help me get started
For I'm one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I'll do it as you do
But at my own pace

Well...

For those of you checking for news on Kennedy... I have none. I will post as soon as I hear ANYTHING. Thank you for checking in and praying!

Sunday, April 27, 2008

Don't Forget!!!

Don't forget to enter my giveaway!!! You only have until May 1st! Please, if you have a second, spread the word!!! My goal is 100 entries... over half way there! Thanks!!! Enter Here!

Saturday, April 26, 2008

A special surprise!!

OHHHHH my gosh!!! So can I just tell you about my afternoon??? I was taking a small cat nap on the couch while Keeghan was napping, (because let's face it, I'm up WAY too late at night) when my doorbell rang. WHO is at my door?! I get up, groggy, ready to think of a good excuse of WHY the pesky neighbor kids cannot come into my house, when I see that it is just the mailman. Whew!

So, he hands me a large envelope and goes on his way. "What IS it?" Kassidy asks. "I don't know..." I look at the return address and it's from Michelle. Seriously?! Michelle sent ME something? I was excited as I opened it, but imagine my surprise when I found this:


This is a piece of Michelle's original artwork called "Let Go...Let God!" She is selling different pieces of her work with 50% of the proceeds going back to Childhood Cancer Research. It's such an amazing thing that she's doing for kids like Kennedy and all the other thousands of kids in this country with cancer. PLEASE go visit her site and support her cause... it's our cause too. Always.

So here's the thing, I didn't bid on this piece, (as much as I would have liked to!) so HOW did it end up in my hands?! Well that's the even "more better" part. It came with a card designed by Angel Julian and on the inside it says one of Julian's most favorite phrases... "...because I love you more better".

The card was from my friend Kelly from Northern California and she won the bid on this artwork and wanted Kennedy and I to have it! I am so, so touched. I LOVE this picture and am going to buy a frame for it and hang it in Kennedy's room. When Michelle becomes famous for her children's books, I know my kids will be so excited to have a "Michelle Original". As for me? I'm already excited!

Thank you Kelly!!!!! Thank you Michelle!!! Thank you Julian!!! You made my afternoon wonderful!

Awards and Tags!

So I'm catching up on awards and tags, so look for your name below... you may be "it"!

First, Rae over at Girl Box Maker awarded me the Arte Y Pico award. Sounds very Latin! :) Thanks so much Rae!!!

The rules for this award are:

1. You have to pick 5 blogs that you consider deserve this award for their creativity, design, interesting material, and also contributes to the blogging community, no matter what language.

2. Each award has to have the name of the author and also a link to his/her blog to be visited by everyone.

3. Each award winner has to show the award and put the name and link to the blog that has given her/him the award itself.

4. The award winner and the one who has given the prize have to show the link of Arte y Pico blog, so everyone will know the origin of this award.

5. To show these rules.

I now tag:
Shari over at Life with my Precious Family
Debbie over at Finding Normal
OhMommy at Classy Chaos
Shanna at Living to Learn
Mimi at Take My Life... Already Yours




Stephanie over at A is for Aiden tagged me for this meme. I did a similar one awhile back, but I thought it would be fun to do it again! I am supposed to share 6 little known facts about myself:

1. I am addicted to "The Young and the Restless". This is my grandmother's fault. I have been watching off and on since I was about 4 years old... I have seen Victor married more times than I can count. Yes, it's my guilty pleasure haha.

2. One of my most favorite foods, if it's made right, is banana pudding.

3. My husband has taught me the art of eating Mexican food... with limes... lots and lots of limes! (Before we met I thought Taco Bell WAS Mexican food haha.)

4. I get REALLY stressed out if my laundry (and especially the kids laundry) is put away in the wrong spots or on the wrong hangers. Just ask my mom LOL.

5. Kassidy and Kameron are MUCH better artists than I am. Thankfully they inherited the artistic gene from their daddy and NOT me! haha

6. I love to get my hair done and I love my hair dresser, she's so nice and loves my kids... so how could I NOT like her?! :)

I now tag:
Laurie at For Heaven's Sake
Mindy at Isn't This Fun!?
Michelle at The Welch Family Journal
Sarah at Random Reflections
Cynthia at MeAnderings




Ashley over at Ashley's Attic gave me this award. I was so excited, I've always wanted this one! :) Thanks Ashley!! BTW, if you live in TN go check out her store! She has the coolest stuff! I really need to go raid her Groovy Girl collection before Kennedy's birthday! :)

This award comes with these instructions: By accepting this Excellent Blog Award, you agree to award it to 10 more people whose blogs you find Excellent Award worthy. Please award at least 10. Feel free to recognize blogs that have already received this award.

I now tag:
Heather at Audience of One
Kelli at Did I Shave My Legs For This?
Alyssa at Faith is more than Believing
Sharliss at Sharliss Jane
Jana at The Kelley's Journey
Amy at Larkin's Place
Heather at Little Wonders
Candie at The Bowen's
Military Mama at This Military Mama
Hayley at Kicking Cancer's Arse


Friday, April 25, 2008

Biopsy Update

April 29, 2008 8:23 AM - For those of you looking for an update, I haven't heard anything yet... I will post as soon as I do! 

We are home. The biopsy went well, no problems with anesthesia and she woke up just fine! My friend Nina went with me to help with Keeghan and I think we left there a little after 3:00.

We are not sure of anything yet, but so far there is no bad news to report, so we're going to try to relax and have a good weekend. Dr. Sisler will call us on Monday with the final results. On a GOOD note, her counts were MUCH better today, so that's encouraging. 

I have to say, I love all the hemonc people. I can always go there and know I won't have to hand out any signs or say the word "Seriously?!" a lot. They were even nice enough to remove her IV before she woke up! (I know that sounds silly, but for Kennedy that's a HUGE sign of love, she hates having them removed!) 

Anyway, that's it for now... results Monday... AND we find out who won the Military Mother of the Year on Monday... What is it they say? "Good things come to those who wait"? I think we've done our fair share of waiting, bring on the good news!!! 

Thank you to everyone who prayed today! 

I am thankful for Kim who does the biopsies, I know she always takes fabulous care of Kennedy. 

PS. I'm having a contest on my blog for anyone interested!

Pray for Kennedy!

Kennedy goes in for her bone marrow biopsy today at noon. Please keep her in your prayers! We probably won't get results until Monday. Thanks! :o)

Thursday, April 24, 2008

Finally getting somewhere

Today was a crazy day... it started out with Shriners saying they STILL didn't have the records from Vanderbilt, so I called Vandy and they said all 240 pages (and remember that's only a fraction of her records) was mailed last Thursday. Turns out they forgot to put the "Attention to" on there to get it to the right person. So I called Shriners back, they located the records and anesthesia went over ALL 240 pages in about half an hour. Really?! WOW they must be speed readers! What a waste of time. So anesthesia called me and said she was cleared for surgery from their standpoint and the only thing they need now is a note from hemonc saying she is cleared from their side too. Of course right now hemonc can't clear her... 

So then I get a call from hemonc who said that anesthesia doesn't want to sedate her for the bone marrow biopsy. So they wanted to wait a few weeks and see if the fevers stop or if her counts get better or worse and then approach the situation again... BUT that means we can't set a surgery date with Shriners. Also, she ran a 101.7 temp ALL night last night that even Motrin wouldn't help. SO then it was suggested that they do her bone marrow biopsy while Kennedy is awake. Uh... let me think about that. NO! So she asked if I could have Shriners fax the records from her MRI and CT done at CHOP to the anesthesiologists at Vandy. I think her records have changed hands so many times in the last couple months that she should break some kind of record somewhere! haha 

So Shriners faxed the records and a few hours later we got a call from Vandy and she's good to go for a sedated bone marrow biopsy tomorrow.The head of anesthesia will be in there with her the whole time, which is a good thing. We have to be there at noon and her biopsy is at 1:30. I'm assuming we won't know the results until Monday. 

THEN just for kicks I got another call from Vandy about getting Kameron evaluated at the food clinic. They told me the first available appointment is June 10th. I think she was expecting me to be upset about that but I was so worn out I just said, "OK whatever!" haha OH and we have an appointment on May 20th in Cincinnati for Kennedy with GI. Here's hoping they can help her with this diarrhea! 

So pray pray pray for everything to go well tomorrow and for good results from the biopsy! 

I am thankful for things falling into place... finally!

My first Give-away!!

In honor of my 200th post (which is this one!) I have decided to do my first Blogger GiveAway!!! I do hope you all will participate! :) All you have to do is leave me a comment and I will choose a winner using random.org on May 1st. The prize? You can choose any 1 item from my e-store and I will have it shipped to you or wherever you'd like! Join in on the fun and spread the word! :)

PS. I forgot to add, if you don't like any of my items I can personalize anything you'd like or make you something special! Just let me know, when you win! :)

Aren't they sweet?

I'm still playing picture catch up... so this is from February, (and Keeghan had a fever, you can tell by his cheeks...) but awww I love this picture! They were sitting on the couch watching cartoons without a care in the world. My oldest and my youngest... I hope they always have a close bond.

Wednesday, April 23, 2008

Sweet Boy!

Tonight as the kids were getting ready for bed, Kassidy, Kameron and I were messing around, tickling each other, laughing and being silly. After I finally got them settled down, gave them a goodnight hug and kiss and turned out their lights, I walked into the hallway and heard Kameron sigh and say, "She's the love of my life." I do believe I melted at that moment. I know I won't always be the love of my son's life, but for now I will cherish every single second. You're the love of my life too, Kameron... always and forever.

The Enterprise Boycott!

So, my friend Carlos over at Ragamuffin Soul had a little run in with Enterprise Rental Car. I'm thinking all the people over there need some of my signs. Turns out, so many people have linked to his thread that if you Google "Enterprise Rental" it's on the first page. We're trying to get it to the top so people will know NOT to rent a car from them. SO here you go Los! Revenge is sweet sometimes! haha

Dear Enterprise Rent-A-Car

Wordless Wednesday - My Soccer Players

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Tuesday, April 22, 2008

This N That

I want to start off by saying thank you to all of you who have been following Cody's page and praying for him and his family, especially right now. I am going to his service tomorrow and I know it will be just beautiful. Jennifer told me that Cody helped plan it, so it will be exactly what he wanted and a reflection of the amazing, wonderful kid he was, I'm sure. I wasn't sure I would be able to make it tomorrow, but this morning I just prayed that if I was meant to be there that God would open up the doors to work it all out... within the hour I had all 4 kids covered and the time opened to go. He is good.

Kennedy went into clinic today to get her counts checked. Over the last 3 weeks she has been spiking random fevers off and on. I have tried not to be overly concerned with them, but the random fevers were the beginning of her symptoms when she was diagnosed last year. Today her counts came back slightly... off. Not bad really, but just off for her. Her hemonc doctor has decided that to be safe they're going to do a bone marrow biopsy and make sure everything is ok and her Leukemia has not returned.

She made a good point that when Kennedy was first diagnosed she never presented like a typical Leukemia kid. They were all really surprised when her biopsy showed that she had it. (Kennedy doing something not medically normal... imagine THAT!) Therefore it's really better to err on the side of caution. Most likely, Kennedy is FINE... but that's what I was saying just over a year ago as well. As they said, this biopsy will just put all of our fears to rest and we can move forward with her spine surgery with certainty.

The biopsy will be done next week sometime. They don't have a date yet because they aren't sure anesthesia is going to be willing to sedate her without some other tests (is that like de ja vu or what?!). Kim, who does the biopsies, was leaving a message for them as we left so I'm sure we'll hear in the next couple days.

All that to say, don't freak out. I'm fairly confident that she will be fine, but I did want to post to ask you guys to pray and so if it DOES come back bad you won't say, "WHY didn't you tell us?!" haha I will keep you all posted as I know more.

Possible Relapse...

Hi everyone, 

I want to start off by saying thank you to all of you who have been following Cody's page and praying for him and his family, especially right now. I am going to his service tomorrow and I know it will be just beautiful. Jennifer told me that Cody helped plan it, so it will be exactly what he wanted and a reflection of the amazing, wonderful kid he was, I'm sure. I wasn't sure I would be able to make it tomorrow, but this morning I just prayed that if I was meant to be there that God would open up the doors to work it all out... within the hour I had all 4 kids covered and the time opened to go. He is good. 

Kennedy went into clinic today to get her counts checked. Over the last 3 weeks she has been spiking random fevers off and on. I have tried not to be overly concerned with them, but the random fevers were the beginning of her symptoms when she was diagnosed last year. Today her counts came back slightly... off. Not bad really, but just off for her. Her hemonc doctor has decided that to be safe they're going to do a bone marrow biopsy and make sure everything is ok and her Leukemia has not returned. 

She made a good point that when Kennedy was first diagnosed she never presented like a typical Leukemia kid. They were all really surprised when her biopsy showed that she had it. (Kennedy doing something not medically normal... imagine THAT!) Therefore it's really better to err on the side of caution. Most likely, Kennedy is FINE... but that's what I was saying just over a year ago as well. As they said, this biopsy will just put all of our fears to rest and we can move forward with her spine surgery with certainty. 

The biopsy will be done next week sometime. They don't have a date yet because they aren't sure anesthesia is going to be willing to sedate her without some other tests (is that like de ja vu or what?!). Kim, who does the biopsies, was leaving a message for them as we left so I'm sure we'll hear in the next couple days. 

All that to say, don't freak out. I'm fairly confident that she will be fine, but I did want to post to ask you guys to pray and so if it DOES come back bad you won't say, "WHY didn't you tell us?!" haha I will keep you all posted as I know more. 

Until next time, 
Renee 

I am thankful for our doctors in the hemonc clinic. I know they are taking the absolute BEST care of Kennedy.

Kennedy's coloring contest

Just before Easter, Kennedy entered a coloring contest at the place where she gets her PT and OT, and she won!! She got this great Easter basket full of goodies! I would post her art work, but Keeghan ate it. LOL

P.S. I'm playing catch up with pics... sorry for all the old ones!

Monday, April 21, 2008

"You should totally blog that!"

So we have this little dilemma... Keeghan is too smart for his own good. We have stairs going to our top floor that Keeghan LOVES to climb, and he mastered this skill many months ago. It's not the going up that bothers me, it's the falling back down! AND I shudder to think of the millions of dangerous things he can get into up there.

The way our stairs are set up, a baby gate is not an option so we got creative and put a rubbermaid bin in front of the stairs which Keeghan used as a drum but couldn't get around it to the stairs. Problem solved. Not.

Mr. Smarty Pants figured out how to push the bin to the side and go up anyway. When he gets to the first step, he'll turn and look at me like, "Are you going to stop me?!" Then I say, "Keeghan! NO! Naughty!" And his face contorts into this horrible scowl and he lets out a little cry... and then he climbs the stairs as fast as he can. SO I grab him, swat him very lightly on the leg, say "NO!" in my firmest voice, set him down away from the stairs where he cries like his world has just ended for 5 seconds and then goes directly back to the stairs. It's fun. Not.

ANYWAY, so the title of my post comes from Kameron... he was watching this exchange between Keeghan and I last night and said, "Mom, you should TOTALLY blog that!" haha I think he needs to start his own blog.

Cody Lee Robinson - Heaven's Newest Angel

Cody Lee Robinson
December 4, 1995 - April 20, 2008

I woke up out of a sound sleep around 2am with the overwhelming thought of "Cody is Home". I thanked God that he was no longer in pain and said a prayer for his family. Today, I woke up to read that Heaven has another angel. Cody passed away last night, peacefully, surrounded by family. This morning, those of us all over the world who love him, mourn. Cody was a blessing and an inspiration to so many. He knew how to turn a serious situation into one where everyone is laughing with him. He knew how to make people understand, beyond measure, that they were loved. We love you so much Cody, and we're so glad you will never know the pain of cancer again. We're so glad we got to say goodbye and give you one last hug and kiss. We'll see you again in Heaven. I can't wait!

Sunday, April 20, 2008

One year ago today... Part 2

One year ago today, Kennedy had her Hickman line placed and she began chemotherapy. She got very, very sick shortly after it started. She spiked a high fever and we couldn't get her to wake up. After the doctors discussed, they decided that she was having a severe reaction to one of the main chemos for AML. Once they turned the chemo off, she woke up and her fever started going down. It was VERY, VERY scary.

The doctors at Vanderbilt consulted with each other and other doctors at different hospitals deciding what to do about Kennedy's chemo... they put her on a new protocol with no guarantees if it would work or not. After pressing for statistics, percentages, SOMETHING, they told me, "Really Renee, it boils down to either 0% or 100%. It's either going to work, or it won't." I stopped asking and started praying.

Here is Kennedy during her first round of chemo, as you can see, she didn't lose her appetite or her sense of mischief!

More later....

Looks like she lost a fight!

If she won, I'd like to see the other guy!

Kennedy's eye...

Well I talked to a nurse this morning about Kennedy's eye, and she thinks it is most likely a stye. She said it will probably get worse before it gets better because it hasn't come to a head yet. We have an appointment with her ped tomorrow to get it checked out. Please keep her in your prayers!

Oh dear...

So I was getting ready to go to bed about an hour ago, but when I walked upstairs I could smell that Kennedy had a dirty diaper on. So I went in to change her and she woke up and put her hand over her eye and started crying that it hurt.

Once I got her into the light, I could see this:

It's actually a lot more purple than the picture shows and she can't open it any more than it is here... I tried to open it to see if her pupil and the whites of her eye was ok, but she freaked out. This is as far as she can get it open.

I called the doctor and he thinks she was bit by a spider. He said though that if it were a bad spider she would not be able to stand the pain... and she's back to sleep now. So I gave her Benadryl and he's going to call in the morning and check on her.

Poor kid, it's always something!

OK REALLY off to bed now... I think I'll keep Kennedy with me tonight to make sure she's ok!

Saturday, April 19, 2008

YAY!!!! I made the top 5!

I just got a call from cinchouse and I made the top 5 in the Military Motherhood Award! THANK YOU to everyone who voted!! Now a reporter will be calling me to do a profile on our family and then we'll know by next Monday if I won or not! How exciting! :) Thanks again!!

Friday, April 18, 2008

Special K Update

Hi everyone,

I am going to get back to my reflections on last year soon, but I wanted to update on now first...

Kennedy and Kameron went to the developmental ped on Wednesday. They see him every few months. With Kennedy my biggest issue (still) is her constant diarrhea. The GI at Vandy is just not helping. She has yet to actually SEE Kennedy in her clinic in the last 7 months that she has had this diarrhea. She has yet to culture her stools. When I call she just switches her to a new medication blindly. This week when I called she told us to try Citrucel... which if she had even bothered to look at Kennedy's file she would have known we tried that 2 months ago. UGH!

SO the developmental ped wanted to send us to LeBohner Hospital in Memphis to see a GI there. That is where all the kids from St. Jude go so if this IS related to her chemo, they would be the best ones to help. However we found out today that LeBohner won't accept TriCare insurance. *sigh* So now they're looking at sending her to Cincinati. We'll hear more about that next week.

As far as Shriners goes, they should get her medical records sometime this week and hopefully the anesthesiologist will look at them right away and decide if he needs to do his own testing or not. I'm thinking he is going to say he does need to and we will have to fly up there for that. Maybe not though, we'll see.

So back to the developmental ped appointment. He is going to send Kameron to a food program at Vanderbilt. Kameron eats less than 10 foods... most of these foods are NOT good for him. He won't eat ONE veggie... he'll eat a couple fruits, but only if they look exactly right... for example a banana's peel has to be completely yellow with NO brown spots on it. Do you know how hard that is to find?! LOL He ends up eating peanut butter and jelly sandwiches OFTEN for dinner because he refuses to eat what the rest of us eat. I've tried saying, "You will eat what we eat or you won't eat at all" and he goes to bed hungry and then wakes up and immediately throws up. SO he HAS to eat dinner... I think part of it is that he knows he has the upper hand... part of it is sensory issues. The food program is going to help him overcome both of these things (we pray!). I'm not sure on a time frame for this yet, but hopefully soon!

Other than that, Kam is doing well. He had to get blood work done which he was SO upset about but he handled it well :). He's a brave boy! I let him stay home from school the rest of the day so we could hang out. :)

On Thursday Kassidy stayed home sick. She threw up right before school, just one time. No fever, no other symptoms. She just laid around all day and didn't do much. By last night she was feeling much better and went back to school today.

Today Keeghan started in with a cough which got worse and worse as the day wore on. By 4:00 he had a 102 fever. So I took him into evening clinic and he has strep! Poor kid! Their ped said that if Kassidy starts not feeling well again to bring her in to get tested as well. We'll see!

PLEASE keep praying for Cody Robinson, (cp: CodyLee). Kennedy and I are going to visit him tomorrow. We look forward to giving him a hug.

Keep all 4 of my Special Ks in your prayers! They mean more than you know! The contest ended today for the Military Motherhood Award. As soon as I hear results I will let you know. Thanks to everyone who voted! 

I am thankful for my kids and for my mom who helps me keep it all together while Frank is gone!

Poor Keeghan

Keeghan started coughing a little bit this morning and as the day wore on, his cough got worse. By 4:00 he had a temp of 102 so I took him to the night clinic thinking he maybe had croup or bronchitis... His ped looked into his throat and found it covered in white blisters... a quick test confirmed that he has strep :(. He's pretty miserable. Please pray he feels better soon and that none of the other kids catch it.

Thanks for voting!

Today is the last day of the contest so I'm guessing that we'll hear no later than Monday who made it into the top 5. Thank you all for voting!! I appreciate it! I'll keep you posted!

Thursday, April 17, 2008

Two year old forced to smoke pot

So you may remember this post about the parents who were fighting over what gang their child would be in. I thought at that time I had seen it all. The worst of the worst of parenting. I was wrong.

On Monday police got their hands on a video of a teenager forcing his two year old niece to smoke pot! There's a video, but don't watch it if you have a weak stomach or sensitive heart. I wish I hadn't seen it. It's really sad.

The police got ahold of the video because the idiot sold his camera to a pawn shop with the tape still inside... I'm sure the pawn money went to more pot. I hope he goes to jail for a LONG, LONG time.

Read the whole story here.

Wednesday, April 16, 2008

One year ago today... The mini-series

One year ago today, I was sitting here at my desk, on my computer, IMing with a friend, when my phone rang. I saw a Vanderbilt number and took a deep breath as I answered. My heart sank as I tried to comprehend what the doctor was saying... "Cancer... requires chemotherapy... immediate admission... no time to waste." The rest was pretty much a fog. I remember choking back the tears and trying to swallow the lump in my throat as I asked, "Is she going to lose her hair?" *sigh*

Thus began our whirlwind of notifying family and friends, getting Kassidy and Kameron situated over at my mom's house, trying to figure out what we would need to pack in order to survive 3-4 weeks in a hospital room... and prayer... lots and lots of prayer. Please God, just let my baby live. I need her more than You do.

We did make time for this first:




Kennedy's 3rd Birthday portraits... one month early... I prayed they would not be her last.

More reflection later.

Tuesday, April 15, 2008

Wordless Wednesday - Can you feel the love?!


For more Wordless Wednesdays, Click Here

How I almost broke my baby

So I sat on hold with ENT for an hour and a half yesterday... (yes, you read that right. I'm a chump and REALLY believed I was the next person in line!) I never did get a live person. Imagine that. GRR I finally gave up and called back to the pediatrician's office, who I had called earlier in the day, but they said since Keeghan had tubes, I had to call ENT. Once I explained that the ENT people left me waiting so long, they helped me. THEN ENT called me at 8:30 this morning. "How can we help you with Keeghan?" They asked. Hmmm "Well," I replied, "Yesterday, when I was on hold for ninety minutes, I needed you urgently. Since you decided to leave me hanging, I found my answers elsewhere." I thought maybe they would feel bad, or be apologetic, SOMETHING to compensate my wasted time and wasted cell phone minutes. Instead, she said, "Oh I'm glad you got an answer." *click* I stared at the phone like, "SERIOUSLY?! I can't believe they hung up on me!" I'll be making that lady a sign.

So, what did I do, you ask?! WELL... I am using ear drops on Keeghan right now because his ears are full of junk. The tubes are doing their job and draining, but we just have to get them cleared up now. Sunday night after his bath I asked Kassidy to bring me his ear drops. She brought me the bottle, I put a few drops in each ear and got his jammies on. About 30 minutes later I noticed the bottle still sitting on the floor and picked it up to put it away... then I looked at the bottle closer and said, "OH no!" Kassidy accidentally picked up the wrong bottle... and I didn't even THINK to check it. SO Keeghan got Visine drops in his ears. Ohhh I felt horrible! Kassidy felt horrible too even though I assured her over and over that it WASN'T her fault! I called a pharmacist and he said it should be fine so I tried not to worry, but Keeghan had a horrible night and then the next day he kept slapping his head right over his ears and was really fussy. SO the ped's office told me to check with ENT and well, you know the rest.

Fortunately he slept great last night and was fine today. I just can't believe I did that! The nurse in the ped's office called poison control and they too said it was no big deal. Live and learn I guess! It's a mistake I won't make again!

Big Update

Hey everyone!!! 

First I have to say Happy Birthday to two very special people: 
My husband, Frank, and my Grandma! HAPPY BIRTHDAY!!!!! We hope you both had a wonderful day! We love you lots!!! 

Everything is about the same here... still no word from Shriners of course. They don't have the records from Vandy yet... hopefully soon. 

Kennedy is doing ok, she is still battling horrible diarrhea... it's been 7 straight months now... and GI is being... well... difficult. Her ped also thinks she might be aspirating again. If you remember from before, she was on thickened liquids for about a year due to aspiration causing pneumonia. It seemed to have resolved itself and we took her off the thickened liquids back in October but the other night we had spaghetti and she ended up sneezing out the noodles the next day... which means they were in her nasal passages all night...(gross, I know!) which is what happened before when she was aspirating! SO we're keeping an eye on that right now. 

The other 3 kids are doing well. Kennedy and Kameron have an appointment tomorrow with their developmental pediatrician, so we'll see how they are doing. 

Thank you to everyone who has voted for me in the contest!! If you haven't voted yet, and would like to, the link is in the last post. You can vote once per email address. 

I guess that's about it. I'll be posting again tomorrow as I have some things to say, so be ready to visit again! ;) 

Thanks for reading and praying and loving us!  

I am thankful for my husband and my grandmother and their birthdays! :)

Monday, April 14, 2008

HAPPY BIRTHDAY BABE!!


Happy birthday to the most wonderful husband and father EVER! Thank you for working so hard for our family! We're so proud of you and thankful for everything you do! Enjoy your day off and try to find something over there that resembles birthday cake! :o) We love you!!!

The contest... questions answered

Several people have asked about the contest and if you can vote more than once. You cannot vote for me more than once with the same email address, but you can register with different email addresses, so have your spouses and children vote too if they have addresses! :o) Thank you to EVERYONE who has voted and posted it on your own blogs!!

"You are the next person in line"

I called Keeghan's ENT at 1:00 this afternoon because I did something dumb and broke my baby had some concerns about his ears and wanted to make sure that he isn't going to hate me forever he is going to be ok, so I wanted to leave a message with the advice nurse. I sat on hold for what seemed like 100 hours about 35 minutes listening to a dumb recording saying, "You are the next person in line!" GRR FINALLY I got through, explained the situation and after they called CPS on me they told me a nurse would call me back. When I didn't receive a call by 5:00, I called again.

Do you know what I'm doing right now... at 5:54 PM? I'm STILL sitting on hold... and do you know what they keep telling me? "You are the next person in line!" Man, the mom in front of me must have REALLY done something dumb! At least I'm getting a chance to catch up on blogs!

Sunday, April 13, 2008

Oh my goodness, VOTE VOTE VOTE!

OK so remember this contest that I posted about awhile back? Well, I decided to check the website tonight and it turns out that our most favorite Vanderbilt Chaplain, Khette, nominated me! I didn't even know it!!! Thank you, Khette!!! AND I made it into the top 20! SOOO if you have a second, PLEASE vote!. Please get your friends to vote! You have to register, but it's free! I'd really, really appreciate it!!! Voting ends April 18th! THANK YOU!!!

PS. My mom also sent in a nomination for me, and since it's not posted there, I will find it and post it here for you all to read later.

What gang will your child belong to?!

Seriously?! This just leaves me absolutely speechless... which doesn't happen often. haha

A couple got into a fight over which GANG their 4 year old son would join... Oh the decisions we face as parents! I guess this is why you should never date outside your own gang... it causes you to be unequally yoked!

See the whole article here.

COMMERCE CITY, Colo. -- A couple fighting about which gang their 4-year-old toddler should join caused a public disturbance that resulted in the father's arrest, Commerce City police said Thursday.

On Saturday, Joseph Manzanares stormed into the Hollywood Video store where his girlfriend worked, threatened to kill her and knocked over several video displays and even a computer, Commerce City police Sgt. Joe Sandoval said.

After he ran out of the store, police were called and the 19-year-old was arrested at his home.

His girlfriend told police that they had been arguing about the upbringing of their son and which gang he should belong to. The teen mother, who is black, is a member of the Crips. Manzanares is Hispanic and belongs to the Westside Ballers gang, the woman said.

"They have different ideas on how the baby should be raised. Basically, she said they cannot agree on which gang the baby would 'claim,'" Sandoval said.

Manzanares was charged with disorderly conduct, harassment, and domestic violence. He was transported to the Adams County Detention Facility.

On Tuesday, he pleaded guilty to disorderly conduct and was sentenced to a year of probation. The misdemeanor harassment charge was dropped.

Saturday, April 12, 2008

Set your DVRs!

Tonight at 9:00pm (8:00pm central) on Lifetime the movie "The Memory Keeper's Daughter" is premiering! If you haven't read the book, go buy it!!! It's awesome! I hope the movie lives up to my expectations. Here is a brief synopsis:

The birth of a child should be the happiest moment in a couple's life. But when a doctor's wife has twins, one of whom has Down syndrome, this physician makes the difficult decision to send one of his babies away. An attending nurse discovers his plan and intervenes, putting into motion events that will haunt the doc, his wife and his son for the next 20 years. This all-star movie features Dermot Mulroney ("The Wedding Date"), Gretchen Mol ("3:10 to Yuma") and two-time Oscar nominee Emily Watson ("Angela's Ashes").

If you watch it, come back and let me know what you think!

Prayer Requests

 Hello again!

If you haven't read my update on Kennedy from yesterday, you can click on older to see it.

I am writing today to ask for prayers for a few of our Vandy friends... 

First Cody Robinson (cp: CodyLee) has developed some bed sores and he is just feeling really lousy. If you remember, he is home on hospice but they found a new study with an antibody that they are trying on him. We are praying this treatment will be his earthly cure! He is really worried, and so is his mom, of course! Please pray he's not in any pain and is able to keep fighting.

Second, Matthew Litchfield had one of his tests come back abnormal which may show that his GVH (graft vs. host) is too well under control... A little bit of GVH is necessary to help keep his leukemia away. We are praying it was a false number. He'll get retested on Tuesday. They are leaving for Matthew Wish trip to Hawaii soon, so please pray this test comes back normal on Tuesday and that they can still go on their trip! 

Third, our little friend Isaac Diehl (cp: IsaacDiehlsPage) has a rare form of AML and had his cord blood transplant yesterday. He is getting really bad hives and battling diarrhea. Please pray the hives will stop and that this transplant will be his new start to life! 

Fourth, you may remember me posting about our friend Riley Daniels. Their family is in Nebraska now, but he'll always be part of our Vanderbilt family. Riley is just finishing up chemo after his 2nd relapse and will get a boost of his donor cells on Monday. For his last test his bone marrow was 100% free of leukemia cells, but they did find active leukemia cells in his testes. He will start radiation next week to try to eliminate that! Please pray that this boost and the radiation will FINALLY get rid of Riley's cancer forever! 

And last but not least, please continue to keep Erica Kilburn's family in your prayers as they start this new chapter of their lives without her there. I know they are happy that she is now cancer free and in Heaven, but we all miss her so much here! 

Thank you for keeping these kids and ALL our Vanderbilt families in your prayers! Even though Kennedy is doing so well with her cancer, the friends we've made along the way are never far from our hearts. 

I am thankful for all our Vanderbilt friends and the blessings they bring to my life!

Friday, April 11, 2008

Still no release...

So here it is... Friday... I last updated on Monday... so logically, by now I should have that medical release from Vanderbilt that they told me would be mailed out on Monday afternoon. Do I have that release? Hmmm... Nope! I called them today and the lady had NO idea who I was, had NO record of me calling SO the release never even got mailed. *sigh* Supposedly they faxed it to Fort Campbell today and I will pick it up tomorrow while I'm there and fill it out and they'll fax it back to Vandy for me. Let's see how that works out. 

So I'm guessing that by the time Vandy gets the fax on Monday, then goes through ALL of Kennedy's records to find the studies that Shriners wants, and then mails it up to PA (which I'm sure they'll do snail mail), they MAY get it by next Friday. This means the anesthesiologist won't see it until a week from Monday... and I'm guessing he'll decide he doesn't want to go through all 200 pages they'll have to send him, so either he'll fake it... or who knows, maybe he really WILL read it all, and either way we're looking at the beginning of May before they even TALK about a surgery date. In the meantime, Kennedy is being a trooper in her neck brace! 

It has occured to me several times over the past week that maybe God is delaying this surgery for a reason. The obstacles that keep arising are so... strange, and in my mind, unnecessary. So I'm praying that His will is done and if there IS a reason for putting this surgery off, that He will reveal that to me so I don't continue to sit here and wonder what the heck is going on in people's heads! 

Anyway, all is mostly well here. Kennedy's been very whiney this week, and running random fevers. We're guessing it's just a virus, I just wish she would show SOME other kind of symptom, it would make mom feel better! The other kids are doing great. They are happy it's Friday and are looking forward to soccer tomorrow and church on Sunday. I am having just a wonderful week with my allergies. My eyes are running, my head is pounding, and I feel like I could sleep for a week! HA! 

I have SO many new pictures to get off my camera... some of them are absolutely adorable, as I'm sure you can imagine! :). I'll try to get to that this weekend! 

Thank you for continuing to check in on us and continuing to pray. Right now, just pray that all these little details work themselves out... one way or another. 

I am thankful for perspective and that Kennedy does so well in her neck brace.

Blast from the Past - It's just what women DO!

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! :)

Kassidy in July 2004

July 2004
When Kassidy was 4 years old we were sitting in my bedroom and I was brushing her hair. She was telling me that when she gets married she wants to have two children, a boy and a girl, named Zack and Zoey (my name sickness is being passed to future generations haha). So as we talked more about this (like what if your husband doesn't LIKE those names!) Frank walked in and was listening to our conversation. He asked Kassidy, "Well Kass, what if you don't get married?" Kassidy said, "Well of course I have to get married!" Frank asked her why and Kassidy rolled her eyes, sighed, and said, "Because Daddy! That's JUST what women DO!"

For more Blasts from the Past, Click Here

Thursday, April 10, 2008

Busy Day!

So, I have over 200 items on my Google Reader but they are going to have to wait! Kennedy has a doctor appointment in an hour, and then she has Speech therapy, then a quick lunch followed by Occupational therapy at 1:00, then we need to go pick the kids up from school. After that we need to run home and get Kam ready for soccer practice and then after practice I need to get the kids settled and eating and my mom will come over while I go to a meeting at our pediatrician's office for a committee they asked me to be on. The meeting should be over at 8:00... just in time for me to come home and get the kids to bed; and THEN while I SHOULD be folding my mountain of laundry or picking up the endless amounts of toys in my living room, I will read my blogs haha... at least my priorities are straight! LOL Have a great Thursday!

Wednesday, April 9, 2008

Downsyn After Dark

OK so many of you won't have any interest in this post, but for those of you in the Down syndrome community, especially those of you who post at Downsyn, we have a new community to post at when Downsyn is not working. We are still active Downsyn members, but when Downsyn is broken and you need your fix, come join us at Downsyn After Dark. You'll have to register for a Yuku account and then jump in and post! We look forward to seeing you there! New members who don't post at Downsyn are always welcome too!

Tuesday, April 8, 2008

Spring is HERE!




I have decided that I have a love/hate relationship with Spring.

I LOVE that the weather is getting warmer. I love that I don't have to bundle my kids up just to go to school. I love that it stays lighter later. I love that I wake up to sunlight instead of gray skies. I love that the green is coming back to my grass and my trees, and the trees in front of the kids school are full of the beautiful white/pink blossoms that I look forward to every year. I love the small specks of color with each flower I see brightening our world.

I HATE that my eyes won't stop itching, my nose won't stop running and everyone that sees me thinks I am tired, sick or just got done crying. I hate that I sneeze a million times a day. I hate that my nose is raw from all the Kleenex. I hate that allergy medications knock me out so bad that I can't function. I hate that I feel too miserable to enjoy all the wonderful things that I love about Spring! Can I please go to bed and sleep until summer?! Achoooo!

Monday, April 7, 2008

Seriously... Long

Seriously?! This was my phrase today... ALL. Day. Long. I think, maybe because it's Monday, or maybe because it's the warmest day we've had this year, or maybe because the sun was too bright, but whatever the reason, I think people lost their brains today. Seriously.

The day started out with a call from Shriners. We're STILL waiting on Kennedy's surgery date so my heart skipped a beat as I answered my phone. Turns out the anesthesiologist is scared to sedate her. Seriously?! Haven't we been through this routine before?! SO he wanted us to come up there so he could examine her. Seriously?! Let's think about this... that requires a plane trip and moving my other 3 kids to my mom's house and changing everything around for NOTHING! The nurse I talked to (thankfully) agreed with me and said that the anesthesiologist would need copies of some of her records. He needs ALL her gastric studies, ALL her anesthesia reports and ALL her hemonc files. Seriously?! Do you REALIZE how much PAPER that is? We could kill 10 trees just with those portions of her files! I couldn't afford to pay the $1.00 per page to ask for them myself, so I called our most amazing pediatrician and left her a message... which shockingly they did NOT try to put through to the advice nurse first. Hallelujah!

After the big kids went to school, Keeghan and I headed to Vanderbilt to get his ears rechecked with ENT. They wanted to do a follow up hearing test since he failed the first one. Well, wouldn't you know it, he failed again. Seriously. *sigh* His ENT looked in his ears and said there is all kinds of goo and junk in there so I got some drops to try to clear them up. But he doesn't want to see him again for NINE months! Seriously?! My kid could be deaf by then. Thank God for our pediatrician. She'll stay on top of it. So on the way out I scheduled his follow up appointment... for January 2009. Seriously. WHY they even schedule out that far is just beyond me! They asked me if I would be available on January 10th. I said, "Hmmm, let me check my calendar..." oh wait, it's still 2008! How the heck would I know?! Seriously, I'm sure that date is fine.

On the way home I got a call from Kennedy's wonderful speech therapist telling me that our insurance denied her services. Seriously?! What the HECK is wrong with these people?! SO I called them... our conversation went a little bit like this:

Me: (trying to be calm, trying to be nice) I seriously need to know WHY my daughter's services were denied.

TriCare: The school system didn't fax over the information we requested.

Me: Yes, as a matter of fact they did.

TriCare: No, we don't have anything from them.

Me: Well, I'm sorry if you lost it, but it was faxed over a couple weeks ago.

TriCare: We don't have it so it was NOT sent over.

Me: *sigh* OK fine, what do I do now?

TriCare: Well you can file for an appeal... all the information on how to do that is in the letter we sent you last week.

Me: I never got a letter.

TriCare: We sent it so you must have it.

Me: But I don't have it, I never got it.

TriCare: Well, that's not our problem. We sent it.

Me: (Not so patient anymore) SERIOUSLY?! SO it's MY problem that you SAY you never got the paperwork from the school system even though I KNOW it was sent... AND it's MY problem that I never got the letter that you SAY you sent... How are BOTH of these things MY problem?! Could it BE just MAYBE that you misplaced the paperwork sent by the school system... or could it BE just MAYBE that you never sent me the letter?

TriCare: No. The paperwork was NEVER sent from the school system and we DID mail you the letter so if you didn't get it, you'll have to contact your post office because that means they didn't deliver it.

Me: SERIOUSLY?! SO NONE of this can be your fault?!

TriCare: No Ma'am.

Me: (REALLY not being nice now) SO HOW can I file for an appeal since you never sent me the paperwork?!

TriCare: We DID send you...

Me: OK just tell me what to do! Can I just have her ped submit another referral?

TriCare: No, the nurse who reviewed it denied the claim so you HAVE to appeal.

Me: A nurse?! I want to talk to that nurse.

TriCare: That's not possible.

Me: They don't have PHONES? They don't have EARS? They can't TALK?

TriCare: Not to you.

GRRRRRRRRR At this point I hung up. Seriously.


So then I get a call from the pediatrician's office and as much as they would LIKE to help me, they only have access to Kennedy's last few appointments in each speciality. They're apologetic and sympathetic and I'm back at square one. So I call Vandy and get the records department and they say that I just need to have Shriners fax them a note with Kennedy's name, birth date, social security number and the records they want and they will fax them her records! Seriously! GREAT! SO I call Shriners and they say (seriously) "ohhhh no we can't do that... YOU have to request the records!" I tell them I CAN'T or I have to pay... so we go round in circles, I finally call BACK to Vandy who is now mailing me a release to sign and they will mail the records to Shriners. In the meantime until they get those records and the anesthesiologist decides if he needs to see her or not... no surgery date. Seriously.

Next I get a call back from Kennedy's speech therapist who tells me that the nurse DID get the letter from the school system and they even TALKED to this nurse afterwards and she said everything was fine. SO I call TriCare back again... it went a little like this:

Me: I called earlier about my daughter's referral for Speech therapy that was denied. You said you didn't get the letter and I now know for SURE that the nurse by this name (insert nurse's name here) GOT that letter and told the speech therapist that it was all FINE. Seriously!

TriCare: Well that same nurse is saying she never got it... I guess I'll have to have her call you.

Me: Hmmm... Seriously? I thought they didn't have phones?! (UGH!!!!!!)

SO we went to dinner with my mom, went back to her house for a bit and my phone rings... it's the nurse from TriCare... "I'm so sorry for the confusion. Kennedy's speech therapy has been approved. I did get the letter." Seriously?! Imagine that. I STILL don't have the letter they said they mailed to me! (Not that I even WANT it now!)

SEE? Brains out the window. Why is it that people have to make things WAY more difficult than they need to be? Like seriously, anesthesia couldn't have met with us when we were in Philly FOUR WEEKS ago? Or they couldn't have called for these records like 3 1/2 weeks ago?! Seriously?! At this rate she won't be having surgery until August! And seriously, I understand mistakes happen and papers get misplaced... both of my kids' teachers can tell you I do it ALL the time, but my goodness, at least ADMIT that just MAYBE you could be to blame! Seriously. I'll have to go right ahead and call my post office and accuse them of holding my mail. haha I'm sure that would go over well.

OK I'm off to wind down... no one call me and ask me for paperwork for the next week or so. I don't have it. It was lost in the mail. Seriously.

Saturday, April 5, 2008

Deployment 2008 - Day 100!!

Wow... In some ways it is so hard to believe Frank has been gone for 100 days already. In others, if feels like he's been gone SO much longer than that! He is still doing well in Afghanistan. Those of you who check Kennedy's carepage know that he fell off a helicopter a few weeks ago... he's doing fine from that now... I joke that maybe it knocked some sense into him! haha But really, if I haven't done that after 10 years, I guess nothing will! ;) (I love you, baby!! haha)

The kids have been talking A LOT about missing Daddy this week. They're bummed that we aren't going on Kennedy's Wish trip like we had planned, but I'm really talking up Philadelphia and they fact that they'll still get to SEE Daddy, and that's what is important! Kassidy's class made cards for him this week. Kameron's class did that about a month ago, so that makes both the kids AND Frank happy!

All in all, we're all doing just fine. I know Frank is sad he'll be missing Erica's funeral tomorrow, but I'll be there for both of us. He cared about her so much! It's hard.

Anyway, there's my 100 day update and we can finally say "less than one year" before he comes home for good... March 2009... it's getting closer and closer!

Friday, April 4, 2008

Blast from the Past - A Wonderful World

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 can't remember the exact date of this video... but it was taken at Vanderbilt sometime in the Summer of '07. Isn't my little guy so cute? I can't believe how much he's grown in less than a year!



For more Blasts from the Past, Click Here!

Our Angel Erica


Erica Kilburn
February 7, 1989 - April 4, 2008

Once again I sit here numb... the bitter word "cancer" rests on my lips. I hate to think about it. I hate to speak it. I hate to admit that sometimes it has the upper hand as it wreaks havoc not only on the body of the person it's invading, but also in the lives of everyone who loves that person.

I have so many questions... questions that no one can answer except to say that it's not fair. Cancer sucks. This truly has become my motto in life. It's become embedded in my soul. Some days I can get through the whole day without thinking about it, and others, like today, it consumes me.


Erica and her mom, Cindy

Let me tell you about our friend Erica. Erica is 19 and in January 2007 she was diagnosed with Acute Myelogenous Leukemia. While she was fighting, she went on to graduate high school; and when she should have been planning her wedding to her amazing fiance Luke, she hung out in the hospital... getting chemo and radiation and fighting off this nasty beast called cancer.

But there's more. Erica is a true blessing to me. She is one of the strongest Christians I have EVER met. Actually, let me rephrase that. She is one of the strongest PEOPLE I have ever met. When Erica relapsed she posted on her caringbridge page that she only wanted positive people to visit her. She said that she planned on winning this battle and if you didn't believe that, then no offense, but stay away! :) She said often that her life is in the hands of Jesus and He is taking care of her, so she isn't going to worry! Her attitude toward life and cancer is just inspiring!


Erica and one of her nurses, Tiffany

If you were at Vandy this summer you would most likely find Erica sitting on the floor in the hallway coloring with one of the kids, or playing a game with them. She would organize scavenger hunts for the older ones and play dress up with Kennedy and Nevaeh or Buzz Lightyear with Charlie. At night you would find her cuddled up with Luke watching a movie or taking laps around the hallways trying to keep her strength up. And of course, she would stop by our room for some Groovy Girl time. Most importantly, when you saw Erica, she was always wearing a smile... always.

As it turns out, God has decided that He needs Erica with Him. Even after a bone marrow transplant with her amazing sister Becky as her donor, the cancer just kept coming back... and while our human minds will never understand... while we scream and cry at the unfairness of it all, I know that deep down inside Erica was saying "OK Lord, I'll go where you need me." And the rest of us here will miss her so greatly. And we'll hurt so badly. But we'll find comfort in the fact that she will never again know pain. She will never again cry tears of sadness. She is in Heaven once again playing Buzz Lightyear with Charlie.


Erica and her fiance, Luke

In the meantime, I'm here... brokenhearted once again by this terrible, horrible disease. In times like this, all I can do is pray. I am praying for her fiance Luke... and for her mom Cindy... and for her sisters... and the rest of her family and friends and I'm praying that the thousands of lives that Erica has touched will live their lives in her memory. I pray that we will never let her spirit, her fight, her love for the Lord fade away. She will live on in those of us who love her, until we get to see her again. Her life is truly one I am most thankful for.

Thursday, April 3, 2008

It's official!!


After several nights of horrible sleep and long days I was reading a caringbridge page tonight and I stared at the journel in complete confusion for several minutes while I thought, "How in the heck did she get this journal entry to say April when it's still March?!" Yep, I've officially lost my mind.

Wednesday, April 2, 2008

Wordless Wednesday - Nuff said

Kennedy update and stuff

Well guys, 

I am so sorry for the lack of updates on Kennedy. I was really, really hoping to be able to write and say we have a surgery date... but I haven't heard ANYTHING from Shriners since last Friday when I got an email saying they were still working on it. *sigh* 

Otherwise she is doing fine, she's handling her neck brace well and even told me "Thank you!" when I put it back on after her bath the other day. She's so amazing! She is still having horrible diarrhea... we're now on month 6 of... poop. It's so frustrating! GI has her on yet another medication, but so far it's not helping. Once I can prove that this isn't going to work I think I'm going to take them a diaper and beg them to run tests... they should have done that a LONG time ago... but what do I know, I'm just a mom! 

The rest of the kids are doing well. Friday is Keeghan's follow-up appointment with ENT, but I anticipate that will go well. It's been SO nice not to have any ear infections!! In fact, we haven't been to the pediatrician's office for 2 weeks as of today! That is the longest we've gone since October! YAY for us! :) 

Please pray that they'll call with a surgery date SOON. And please please pray for Cody and for another friend from Vanderbilt, Erica. I know I have asked before, but they both really need it right now! 

I am thankful for NO ear infections!!

Tuesday, April 1, 2008

So let's get back to real life

I hope you all had a wonderful April Fool's day and were not as sensitive as I guess I am! I'm glad most of you got my joke and it was nice to see some long time readers delurk! :)

Time to get back to the important stuff now. If you follow Kennedy's carepage you've already heard about our friend Cody Robinson. Cody is a patient at Vanderbilt with Kennedy. He has a type of cancer called Ewing's Sarcoma. After a long, hard fight Cody and his family were told yesterday there is nothing more that can be done for him. They went home and hospice was called.

Cody is the most amazing kid! He was diagnosed not long after Kennedy was and we spent a lot of time inpatient together. Cody was in a wheel chair and he would wheel himself into Kennedy's room and play Groovy Girls with her or take her on a ride in his wheel chair through the hallways. When Cody would come in, Kennedy would get SO excited and yell "DODY!!!!!" He truly lit up her days... and I think she did the same for him.

One day, Cody and I were talking and he told me that he only had a 20% chance of beating this cancer. What do you say to that?! He continued on to say that he planned on being part of that 20%. We prayed so that he would be. His goal in life? To grow up, get married and have lots and lots of kids... and he said he would love to have a daughter JUST like Kennedy... and he couldn't imagine why anyone wouldn't want such a wonderful little girl.

Cancer just sucks. I hate it. I hate that it claims the lives of the innocent, the young, the kids who would so obviously grow up to be amazing adults. My heart is just broken. I am praying for Cody's earthly miracle... in the meantime he is home, being happy and doing everything he's ever dreamed of. Kennedy and I are going to visit soon, just so we can see the smile on both their faces for a little while.

If you'd like to follow Cody's page and pray for him, I know they would be honored. You will be so blessed by hearing Cody's story and seeing the way he lives his life. You can find his page at carepages.com and his site name is CodyLee.


Kennedy & Cody at Vandy this summer