Thursday, July 31, 2008

A Kameron conversation

(Last night about 20 minutes after I put the kids to bed, Kameron comes to the top of the stairs:)

K: Mommy? I accidentally bit two of my fingers.

M: You BIT them?

K: Yes... I just got hungry.

M: *groan* Go to bed, Kam!

And the award for best drama performance goes to...

Sincess Kennedy!
Last night the kids were downstairs playing and watching cartoons when I called them up (at 9:00) to get ready for bed. Kassidy turned off the TV and Kennedy immediately started crying. She's usually very "go with the flow" so at first I was worried that she was hurt.
She came up the stairs with a pout on her lips and tears in her eyes and said, "I wanna watch TV!"
"No Kennedy," I said, "It's bedtime now. You can watch TV tomorrow."
"Noooooo watch TV now!" *sob* *sob* *pout*
"Kennedy you need to lie down so I can change your diaper."
(As I'm changing her diaper) "I wanna go downstairs." *sob* *sob*
"Kennedy, it's BED time now, come give mommy a kiss."
She heads up the stairs (pouting) and says, "No. Going bed now."
So I follow her to her room and pick her up, "Can I PLEASE have a kiss?"
"No." And she puts her hand over my mouth and says, "Be quiet." *pout*
WHAT? My 4 year old just told me to be quiet! LOL *sigh*
"OK, Kennedy, good night. I love you."
She rolls over pulls her blanket up and grunts at me. As I walk out the door I hear:
"I wanna watch TV." *sob*
She was fast asleep in less than 5 minutes. I'm thinking she was REALLY tired! LOL

Wednesday, July 30, 2008

To backpack or not to backpack?


So here's the thing... Kassidy and Kameron have perfectly good backpacks from last year. They actually held up surprisingly well. Kameron has a Transformer backpack... and he's still into Transformers. Kassidy has a High School Musical backpack... and she's 8 so DUH she still likes High School Musical. But guess what? They want new ones.

So do I buy my kids new backpacks when Kameron will be getting yet ANOTHER Transformer backpack (of course this one will have Optimus Prime instead of Bumblebee) and Kassidy will either pick a DIFFERENT High School Musical one... or maybe Hannah Montana... or heaven forbid the Jonas Brothers... so in my mind they can just use the ones they have (which are still in VERY good shape) but they both want new ones...

SO you... my blogging buddies and blog readers get to decide if my kids get new backpacks or not! Leave your vote in the comment section:

YES buy your kids new backpacks! New Year, New Stuff!
or
NO they'll be just fine with the backpacks they have. They can get new ones next year.

Majority Rules!

Family update


Hi everyone,
Everything here is about the same. The kids (Kass and Kam anyway) are getting ready to go back to school the end of next week. They both have dentist appointments tomorrow and then I need to try to figure out what school supplies they need. I swear last year their lists were printed out at Wal-Mart!
Keeghan is feeling much better from his strep and ear infection. He's currently running back and forth through the living room. Whatever makes him happy I guess! :)
Kennedy is doing well. She's been going up and down the stairs all by herself and giving me a heart attack! haha The pins that were originally bad seem to slowly be getting better, but now she has another one that is really yucky, so we're battling with that one. We're still waiting to get her return appointment booked at Shriners. It's going to be sometime the middle of August.
If you have a minute and a few prayers to spare, please go visit our friend Coleman (cp:ColemanScott). He and his family really need them right now.
Anyway, I guess that's about it, I just wanted to let you know we're still here! There are some new pictures and other fun stuff on my blog.
I am thankful that my kids are excited about school!

Wordless Wednesday - My handsome little guy - Part 1


For more Wordless Wednesdays, Click Here.

Tuesday, July 29, 2008

How Much is Your Blog Worth?


My blog is worth $68,873.88.
How much is your blog worth?


(Just click on the "how much is your blog worth" link above to find out. :))

Award and MEME Time


I received this award from Jenn over at I Hate Whine! and from Debbie over at Finding Normal. Thanks ladies, it means a lot!
I now pass this to:
Christina over at Kwisteena's Kwaziness,
Renee over at 3 Little Lady Bugs,
Bethany over at Life with Bubba and Chicky and
Jessica over at This Mama's Hood



I've been tagged by Christina over at Kwisteena's Kwaziness and Renee over at 3 Little Lady Bugs for the 6 Words Meme. I am supposed to define my life in 6 words and then tag 5 people. Here it goes:

1. Crazy
2. Full
3. Blessed
4. Happy
5. Stressful (sometimes)
6. Exciting

I now tag:
Jenn at I Hate Whine,
Debbie at Finding Normal,
Amy at Hang on a Minute,
Cindy at Life Lessons of Raising 5 Children and
Brittney at Blonde Ambition

Have fun ladies! :)

Cleaning Fool...

Yes, this has been ME today... sort of... haha. I think I need Merry Maids or something. My poor house. My bathroom is clean (thanks to my mom) and my kitchen is clean... and the rest... well... I'm thinking the earthquake that hit CA today must have had some effect on my house! haha Anyway, I'm around... just not in a bloggy mood I guess!

Monday, July 28, 2008

7 Top Needs of a Wife

So, my Pastor blogged today about the 7 top needs of a wife... all I can say is, WOW! He pretty much covered it!! Go read it, and then have your husbands read it. Then check back tomorrow for the 7 Top Needs of a Husband.

Q&A #17

Do you have one of those little secret cards inside (my phone) that saves all your info?
I guess I did because they switched everything over for me! haha

So do you have to transfer your phone numbers manually?? Or is there a way to upload / download?
Last time I got a new phone I had to do it all manually... technology has advanced since then, I guess!

If the phone still works - the phone company should be able to transfer the numbers...right?
My old phone still works... but it was sad to say goodbye. I get way too attached! haha It's now a toy for Kenn and Keeghan!

looks like they (the kids) only rode the tame rides.. what, no daredevils in the bunch?
Haha Well all Franklin Square has is a carousel, but no there are no daredevils in the bunch... much to Frank's dismay! haha

BTW what kind of stroller is that Keeghan is in? I am in the market for a new stroller, smaller than the travel system kind.
You know, I can't remember what it's called. We got it at K-Mart though and it's much smaller than the travel system but bigger than an umbrella stroller. I'll look next time we take it out of the van.

I have to ask, doesn't that hurt her to bang one of the screws?
Didn't seem to phase her at all... she ran into Keeghan a little while ago too... he cried, she said "sorry" and walked away. I guess she's pretty secure in that thing!

How are Kennedy's pins doing? Any better?
Not really... we're going back to cleaning them every other day... at this point, they scab over and then when I clean them the scabs come back off and open the wounds again so they're NEVER going to heal. Hopefully every other day will be better. I know it will make Kennedy happier!

have they talked about using hibiclens/chlorohexidine on the pins?
No, no mention of that. I will ask about it!

She looks great! Just wondering how is the clothes situation working? I figured most of her clothes don't fit over the halo so are you having to make stuff or guy stuff in a bigger size?
Me? Make stuff?! hahahahahahaha We have friends that are working on some tops and dresses for her and then we also just figured out that halter tops work if we buy like a size 5 or 6.

no pic of the two of you? (me and Frank at the airport)
Nope... I can only be in so many pictures per year before my face melts off. I think I've met that quota. haha
Seriously, I was a mess, my hair was pulled up, no makeup, I was doing you all a favor! :)

I can't believe it's been a month already. It went by so fast, didn't it?
Yes! and No... It was the craziest month we've had in a long time, that's for sure!

That (The ABC interview) was fantastic! I thought it was MUCH better than the Fox interview. You guys did great. So, how's it feel to be famous? lol
haha! I wouldn't know! Though I have to say, we got recognized at the Philly airport. We got to our gate and this lady kept smiling at us and finally she said, "I saw you all on the news!!! Your family is so beautiful!!" Awww... She didn't ask for our autographs though! HA! :)

Any chance ya'll are near Knoxville?
Nope :(. We're 4 hours away from there. We're about an hour North of Nashville.

Man, when will he (Frank) be done over there?
He's set to come home in March 2009.


For more Q&As, Click Here.

Monday Moment for Down Syndrome - Don't Pity Me

Sorry for the lack of Monday Moments. I look forward to getting back to posting these each week.

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

Don't Pity Me
By: Joanne Green

Don't pity me
because my child was not born
"perfect", for in his imperfection I have
learned to see beauty that is deeper
than the flesh.

Don't pity me
because my child and I have faced challenges
that have served to forge
a bond much deeper than love.

Don't pity me,
because you could not have done this,
for I thought that too once,
before I learned that through love you can do
a great many things you once couldn't do.

Don't pity me,
my child is the greatest blessing to ever touch my life
I am rich to have him, and richer still for
the experience of knowing him.
And if you are truly my friend,
then you will understand.

And please,
Don't Pity Me.


For more Monday Moments, Click Here.

Sunday, July 27, 2008

Just a picture...

of my beautiful girl. :o)

Another Garcia in a halo

My friend Tiffany sent me this article the other day about a woman named Alicia Garcia who lives here in TN. Alicia was at work when her husband came and shot her several times before finally shooting himself. He died, but Alicia amazingly survived injuries that should have paralyzed her, or worse. She said that her inspiration is her 2 sons, ages 5 and 3.

Alicia is now recovering and wearing a halo very similar to Kennedy's for the next 12 weeks. Please keep her in your prayers as she recovers and pray for her young sons as they try to process what has happened.

You can read the whole story here.

The first casualty

We have officially had our first casualty from the halo. Kennedy was trying to stand up in the living room and lost her balance a bit and went back down... her pin just happened to land right on my cell phone display, which was sitting next to me on the floor while I changed Keeghan's diaper. It is now cracked. *sigh* But Kennedy's ok... and I guess I get a new cell phone out of it. Anyone want to come help me transfer phone numbers?!

Saturday, July 26, 2008

Poor Keeghan!


There are new pictures up on my blog of Kass, Kam and Keeghan. More pictures coming soon!!
Keeghan still has a high fever and feels yucky, but otherwise we have enjoyed being home. My mom came over and helped me unpack today and otherwise we've just been lazy. Kennedy's doing well and has been walking all over and trying to climb the stairs... which scares the crud out of me! haha Anyway, short update, but I wanted to let you know about the pics!
I am thankful for days when we don't even have to get dressed!

Kass, Kam & Keeghan in Franklin Square

Here are some pictures from Frank's camera and mine from a couple different days. Franklin Square is so cool for kids! They have a nice park and the fountains. They also have a really cool sand castle which I'll post later. More pictures coming soon!

Having fun!









Silly kids!


Friday, July 25, 2008

We are home...

And I am happy to say that today we were NOT that family! Keeghan did great on the flight even though he felt horrible. I called our pediatrician this morning and made him an appointment for this afternoon. We got home in just enough time to unload and then I took Keeghan into the doctor. He has a double ear infection, AND strep throat :(. Poor baby!! His temp was over 104 when we got home, but he's now on antibiotics and he should be starting to feel better soon. Please pray that none of the rest of us catch it!

The kids are SO happy to be home! They are getting reacquainted with their long lost toys and settling in nicely. Remember my deep fried cable box? WELL Charter never called me to tell me they have a new one for us, so I called today and they said only our local office would know where I am on the waiting list... but they "CAN'T" give me a number to that office. Seriously?! UGH! SO I'm going to have to go there on Monday. GRR

Anyway, here are some pictures from the airport today. Frank is on a plane right now to Atlanta and then he leaves for Kuwait tomorrow and eventually he will get back to Afghanistan. Please pray for safe travels for him!

Beautiful Kassidy

Two handsome guys

Say Cheese!

And the little handsome guy!

Group shot!

Keeghan doesn't feel good :(.

Saying goodbye

Thursday, July 24, 2008

Our last day in Philly (and a Kennedy update)

I can't believe our time in Philly is almost over. It's been a crazy month full of great memories, lots of tears - both good and bad, and tons of prayer. God has been so good to us.

Kennedy is doing great overall. Her pins are still a huge mess. Her doctor said he wanted us to start using alcohol on her pins sites to help dry them up, but at this point they are gaping, open sores and the pharmacist we talked to said it was going to be SO painful to put alcohol on them. She recommended an antiseptic wash with Lidocaine in it, and Dr. Samdani approved it so we tried that last night... it was still awful. Anything touching them at all right now just sends her through the roof.

She is now on Keflex (an antibiotic) and will take it for the next 3 weeks until we come back up here for another appointment. At that point, if her skin is not better, they may have to consider taking her halo off. This will only be 6 weeks post-op, so this is definitely not the ideal situation. Dr. Samdani said that right now it's more important to have the halo on than it is to worry about her skin, so we'll do what we can to protect her skin while protecting her neck with the halo... by the 6 week post-op point, if everything is still healing as it should, that ratio changes a bit. He feels a little more confident that she could be out of the halo and it would be MORE important to take care of her skin at that point. (For those of you who saw the pictures from before, it's 10 times worse now... at least!)

SO if the halo comes off, she will be back into a neck brace, but it's going to be a delicate balance of keeping her safe, keeping her from doing anything that can undo the work they've done... keeping my eye on her every second. The most ideal situation, of course, would be that her skin heals and she can stay in the halo for the recommended time period. Even though it's a huge pain, it's keeping her safe, and it gives her the optimal chance for complete healing. For the next three weeks please be praying that the Lord's will is done here. Pray that He will protect her skin and the bones in her neck as they heal. We know that she is in great hands with Dr. Samdani, but pray for him too as he chooses the best plan for Kennedy's care.

I also wanted to take the chance to say thanks to everyone who has been praying for Kennedy and our family over the last month. The cards, the comments and the little things for the kids have all been SO much appreciated. I have tried to reply with an email to everyone who's sent something, but I still have more to send, so if I haven't gotten to you yet, I will.

So tomorrow, my mom the kids and I fly back to Tennessee, and Frank heads back to Afghanistan. It's going to be an emotional goodbye, again, but we're so much closer to him coming home now! I still have SO many pictures to upload. Hundreds. Literally. I will get to those.

One more prayer request: Keeghan is running a fever today. He's over 103 and we can't seem to get it down. He has no other symptoms that we can tell but you can tell he feels lousy. Please pray his fever goes away and that he will be good on the flight home tomorrow. We don't want to be THAT family again.

ABC Interview!

So we totally missed seeing this one on TV... We were out eating Ritas! haha This one is much better and shows lots more of Kennedy and you can see her doctor too! :) Enjoy!

You can also see a video and read the story on ABC's Website and leave comments there and everything! :)

Thanks again Steph for getting this online for me and thanks to Stephanie at Shriner's for setting this all up!

Q&A #16

Kennedy Questions
My favorite part of this post is the phrase "when she HAD leukemia." Does it feel great to write that?
Oh yes!!! It is still surreal to think of all that she went through last year. I don't know if the fear of it coming back will ever subside, but it's a good feeling knowing we don't have to pump chemo into her body every month now!

Isn't there something else you could put on them to keep them from becoming infected besides peroxide though?
Her doctor wanted me to use alchol which I'll explain in a Kennedy update later... we did find something else though that we're hoping is going to work.

Hmm can you use Betadine?
He said if all else fails we can try betadine, but that's really hard on her skin as well. We had tried that with her Hickman line and she still had chunks of skin falling off.

We ended up using methylated spirits (do you have that in US?) mind you, You prob can't use it on pins. Try Manuka Honey, it's fantastic. Perhaps you can get that there??
I have never heard of either of those things! haha

Lets just hope she can keep the halo on long enough for her to heal properly. If she doesn't would she have to wear the neck brace forever instead?
Not forever, but if they have to take the halo off early she will be back in a brace. Not sure for how long. IF she doesn't heal right, there is a chance this surgery will have to be re-done.

How did Kennedy's appointment go yesterday?
Update coming soon...

Kameron's posts:
Wise words young man! Thank goodness it's raining here today, because I was going to see if you were right! Does he know if it's ok to drink the rain water??
Kameron said yes... because he likes doing that! haha

That is funny. I'm curious... what makes him think that?(about Canadians)
Apparently, Kenya told him that. Oh and for those of you wondering, Shuteye is back from Crazyland... oh how we've missed him! ;)

Ask Kameron what would happen if a Canadian touched the sun. If there is no Canada and there are no Canadians, then they can't burn their fingers, right?!!!
He said NO they would still burn their fingers and "stop confusing me!" hahahaha

Hi Kameron, I'm from Canada, FOR REAL! My profile even says so! But, if even that still makes me not exist, does that mean I get out of paying taxes?
He said "Texas? What does that have to do with Canada?" LOL (Oh to not know what TAXES are!)

Miscellaneous Questions
What is your secret to making all the children feel special with so much of your time needing to be given to Kennedy?
We try hard to give them one on one time whenever possible. Frank and Kameron got up early one morning and had "guy time". They went to see the Batman movie. Then one night my mom, Kassidy and I went out for girls night to the Melting Pot for cheese and chocolate. Keeghan... well he pretty much thinks it's all about him anyway and Kennedy has The Princess Syndrome so I think those two are covered! haha If it's not raining out today, my mom said she would keep Kenn and Keeghan so we can take Kass and Kam on the duck ride. We'll see!

I would like to see an unedited version (of the FOX interview) too. Did you talk to them at all??
Yep! I talked to them for quite awhile, and so did Deanna from Operation Homefront. Neither of us got any airtime though.

I wonder if they would be willing to send you an unedited version of the interview.
I should see if I can ask about that! It was at least 20 minutes long I would guess.

OK you are too famous for me! Now that is two times that I can think of that you've been on the news! Can I have your autograph?!
ROFL sure... that and $4.00 will buy you a Starbucks coffee! ;) I think it's Kennedy's autograph that you really need! :)

When are you all leaving again?
Tomorrow.

Is Frank flying home with you on Wednesday or does he have to go back?
We all fly out tomorrow, I think. Frank is having some issues with his ticket right now. Frank will eventually head to Atlanta and then ultimately to Afghanistan. My mom, the kids and I will be going back to Tennessee. He will not be going home with us at all.

For more Q&As, Click Here.

Wednesday, July 23, 2008

Our interview on FOX...

Well, they SERIOUSLY edited this interview, but maybe ABC will do more with Kennedy in it. I don't think the ABC one aired tonight, but there was horrible weather here so that's probably why.
Anyway, thanks Steph for getting this online for me!!! I appreciate it!

Wordless Wednesday - Meeting Zoey


For more Wordless Wednesdays, Click Here.

Interviews over...

The interviews are over now. They both went well! ABC met us this morning at Shriner's and spent quite a bit of time with us and played with Kennedy. She didn't want to talk much, but hopefully they got something out of her. They said it should air tonight sometime between 5:00 and 7:00. They said it should also be online soon so I'll look for the link to that later tonight.

FOX met us here at the hotel at 10:30. We got down to the lobby and they were ready to go! It was over before we even knew it. My mom was on a conference call and came down right at 10:30 and they were practically done. They took some shots of the kids running around so hopefully she got into some of those shots. That's going to air at 5:00 tonight and he said it SHOULD be online as well, but he wasn't sure.

Someone asked in the comments why they were doing this and it's just a human interest story and it's good publicity for Shriner's. They interview several Shriner's families off and on. I think too, FOX got involved because of Operation Homefront's involvement which I plan on posting more about later. We were very grateful for the opportunity to thank Shriner's and OHF for all they have done for us.

I'll be back to post links later! :)

Tuesday, July 22, 2008

Short update...


Hi everyone,
Not much has changed here... Kennedy is about the same. I cleaned her pins tonight and it was torture :(. She now has 5 of her 8 pins that bleed as soon as I touch them. Two on the back are the absolute worst, then there is one more on the back that is getting really bad and 2 in the front that are starting to get bad. It's not pretty. We go back to the doctor tomorrow to see what he tells us now.
Be sure to visit my blog. I have posted a lot of new stuff there... some funny Kameron stories, a story about bone marrow donation, and some exciting news about tomorrow! I'm still working on getting new pictures up, hopefully soon!
Keep Kennedy in your prayers, especially for easy pin cleaning time. I am already dreading it and we don't have to do it again until Thursday night! Ugh!
I am thankful for Kameron... he keeps us laughing constantly!

Coming soon to a television near you...


OK well, if you're in the Philly area, the above statement is true! Tomorrow morning when we go to Shriner's for Kennedy's appointment, ABC is going to be there to interview us! THEN we are coming back to the hotel and at 10:30 we are going to be interviewed by FOX! I'm not sure yet when either show is going to air, or if it will be available on the Internet, but I hope it is! When I get more details I will let you know... if you're in the Philly area and can record it for us, that would be FABULOUS! :)

Remember this post?

Remember back in May when I asked you all to consider signing up to be a bone marrow donor? I was so excited that so many of you responded and signed up... so many of you did so in honor of Kennedy and we were so touched!

A few days ago I received an email from one of our blog readers/care page followers and I wanted to share it with you all, with her permission. Please pray that the Lord's will is done and if she is meant to be a match for this man that it will all go smoothly. Keep this man in your prayers either way as he fights this stupid cancer.

Thank you again to EVERYONE who has signed up! It's such a needed thing and is SO appreciated by all the families who have been touched by cancer.

Hello there - I just wanted to let you know that I followed your link and signed up on the registry back in May. Last Friday I got a call and was told that I am a preliminary match for a 60 year old man with leukemia. They are running some tests on the swabs I sent in and will be in touch with me soon. If it all works out, I will know something definite in 4-12 weeks. I am praying that I will be given the opportunity to give another person a second chance at life. Thanks for posting this because you might have a hand as well in saving another person from the cancer beast.

Monday, July 21, 2008

To all my Canadian readers...

Kameron has informed us that Canada does not exist... apparently it's all make believe. We asked him what was above the United States and he replied, "Canada" but then said that it's all a myth. So, I'm sorry to tell you that you're all figments of my imagination. I thought you might like to know! haha

OK Seriously...

My Google reader has over 800 unread items. I am going to mark it all read and start fresh. If there is something out there that you REALLY want me to see, then I REALLY want to see it! :) Please leave me a link in the comments section! I have a feeling I will be marking everything read again before we get home!

Kennedy update - The good and the bad of it

OK so there's good news and bad news...
The good news is, the pins are not infected! YAY!
The bad news is, the peroxide seems to be eating away at her skin, even diluted to half strength.
The good news is, we no longer have to clean her pins every day... just every other day with 1/4 strength peroxide.
The bad news is this opens her up to a greater risk of infection and letting her skin grow up around the pins.

The good/bad news is that if this continues the halo may have to come off earlier than her surgeon would have liked...
This is good of course because she can get OUT of the stupid thing...
Bad because we don't want to run the risk of undoing all the work they did for her surgery.

The good news is we got out of the appointment in less than 45 minutes... there's something to be said for being the early bird :)...
the bad news is we had to wake up at 6am after 3 weeks of sleeping till 9 or later... I'm beat! hahaha

Please continue to pray for Kennedy and that this new plan works to heal the back of her little head. We go back to see Dr. Samdani on Wednesday for one last check up before we fly home. Kennedy and I have to come back up in about 3 weeks for her to be seen again.

Pictures coming soon, promise!

Sunday, July 20, 2008

Kennedy update - Sunday Night

Sorry for the lack of updates... I really didn't have too much to tell. Her surgeon called Saturday and just told me to bring her in first thing Monday (tomorrow) morning, so that's our plan. In the meantime, she now has 3 (out of 4) pins in the back that look bad and one in the front that's heading that way. I feel so bad for her... pin cleaning is like torture. We just finished and I just have this sick feeling about it. I hate hearing her scream "help me!" :( Fortunately she recovers quickly and doesn't hold a grudge. She is happily watching Spongebob now... I wish I could recover just as fast! *sigh* Anyway, keep her in your prayers... these pins suck. Pictures coming soon!

A helpful tip from Kameron

"You should never EVER touch the sun... you'll burn your finger." -Kameron Garcia, July 19, 2008

Saturday, July 19, 2008

Q&A #15 & Kennedy update

OK so I got an email from Kennedy's surgeon telling me he will call me today... and so I wait. He's seen the pictures so hopefully he'll have some words of wisdom or tell me to stop worrying already! Kennedy is still sleeping this morning so I'm hoping it's not looking worse today. Please just continue to pray this is not infection setting in. So far no fever, so that calms my fears a bit. Also, I've heard that if the halo becomes loose it may have to be reset... obviously this is the absolute WORST case scenario, but I just think we should pray against that starting now... I can't imagine!

Here is the latest Q&A, since most of the questions have to do with Kennedy's pin I figured I would just combine them all into one post. I'll update again after her doc calls.




does Kass have her OWN iPOD?....Shes soo young!!!:)
Haha, yes she does. She and Kam both got their own iPods for Christmas... daddy is a bit of an Apple fanatic and talked Grandma into buying it for them. Kassidy has a Nano and Kam has a Shuffle... which has been misplaced. It's around though! They also both got iDogs which are REALLY annoying... but that's another story for another day. Kennedy now has iPod as part of her vocabulary and steals mine and Kassidy's whenever possible.

Oh, I just LOVE Sesame Place! Did your older kids still enjoy it?
Yes! They had a blast!!! They loved going on the water slides with Frank and since Kenn and Keeghan are so into Sesame Street, the older kids enjoyed meeting the characters too. I wish we lived closer!

What is the orange wristband (at Sesame Place) for on Kennedy?
That was a bracelet for Special Needs or Disabled or something like that. They told us to get her one since she was in a neck brace. The 2 or 3 rides that she did go on they let us on first, but she was more excited to meet the characters anyway so we didn't use it much.


Pin Questions
Oh no! Hope they get it figured out. Is it bothering her?
She screams like crazy when I have to clean it... but I would too.

That's really a bummer. Why just one pin?
I'm not sure... but as of last night it was really starting with the pin right next to it as well.

Did you get any answers/solutions to the deep hole? Could the two issues be related?
No, not yet. I was going to ask about that at her next appointment. The hole is on the other side of her head though, so it's not related.

What is a Hickman line?
A Hickman Line (also sometimes called a Broviac) is like a permanent IV. It went into a central vein in her chest and was used to receive chemo, medications, fluids, or whatever she needed when she had Leukemia. They could also draw blood from it. The goal of this is so they don't have to stick her a bunch of times to draw blood and they don't have to change IVs every few days. It also had 2 points of access so they could run fluids and chemo or fluids and meds at the same time. However, Kennedy's line turned out to be constant trouble as we figured out all of her tape allergies and then her skin started breaking down around the line until it simply fell out (once during chemo!). It was a HUGE source of stress for us and she has a ton of scars all over her chest to show for it. I pray she NEVER needs one again! At the same time we were thankful for it because it DID provide an alternative to constant IVs. Here is a picture of a Hickman line. Kennedy's looked almost exactly like this except hers only had 2 lines on the end instead of 3.

Is it OK to give her some Benadryl or anything?
We gave her some Tylenol with Codeine last night to make her comfortable. This is the first dose of pain medication she has needed since leaving the hospital. I definitely think it helped though!

Is she running a temp? Are you putting anything on her skin?
She's not running a fever. I am still cleaning her pins twice a day with the peroxide as instructed by her surgeon. My gut reaction is to put an antibiotic cream on the wound to see if it would help heal it, but I wouldn't do that without her surgeon's permission. It may cause more harm than good... When he calls I'm going to ask about it.

Does she act like it is really bothering her or can she not even get to it?
She can't really reach it but it definitely bothers her when I clean it or if she sits back against it too hard, especially in her wheel chair. I feel so bad for her!

did you email pictures to the Doc?
Yep, the pics went to all 3 of the surgeons who have been following her. They're probably tired of seeing them by now! haha

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Friday, July 18, 2008

Kennedy update again...

Well... I didn't hear back from a doctor today so I guess we're going to have to wait until Monday at this point. I think the surgeon who was in today ended up in the OR with a patient unexpectedly so I don't know if he'll even look at the pictures tonight. I hate to wait until Monday... there is a doctor on call throughout the weekend so we may have to call him. She seems pretty uncomfortable tonight so we'll see how her night goes. Thanks for praying!!

Kennedy update

Well, I'm going to spare you pictures, but Kennedy's pin is not doing well at all. For those of you who followed Kenn during chemo, you may remember when her skin ate away around her Hickman line... well it's doing the same thing around one of her pins now. I emailed pictures to Shriner's and we're waiting for a call back now. If curiosity gets the best of you and you want to see the pictures, feel free to email me. It's pretty gross though. Anyway, please pray there's an easy solution for this... her Hickman line ended up falling out... 4 times. That REALLY can't happen with this pin! I'll keep you posted as I know more!

Thursday, July 17, 2008

Sesame Place

Here are some pictures from our day at Sesame Place. This was obviously pre-surgery! haha I have a few more that I will post another day. Enjoy! :)

Wednesday, July 16, 2008

Q&A #14

I thought the bruises were from poking her while starting the IV etc. What are her counts like? Are they concerned about the leukemia/bruising situation? Her counts are totally recovered right?
Well they took counts on Monday and I STILL don't know what they are... but I'm guessing they're fine or they would have called. Her counts were totally recovered at last check, but any unexplained bruise makes me nervous... probably always will!

Why did you take her (Kennedy) down to the lobby to wash her hair? Just for a change of scenery or was it just easier to do in the lobby bathroom?
Yeah we need a lot of counter space so we could lay her flat and lay her head over the sink... We'll be doing it again soon so I will take pics. Trust me the change of scenery from here to the lobby bathroom is NOT exciting! haha

Oh no he (Keeghan) didn't stick his finger in his mouth after that (picked the horse's nose) did he?
I hope not! ;)

How's Kennedy handling everything? I assume she's probably in a wheel chair.
Yes she's in a wheel chair when we go out because the stroller is too narrow for her halo. She's doing fine though. She does get mad that we won't let her walk around the hotel room, but there are just too many tight corners and edges for her to bump into. We take her out into the hallway though and let her walk out there for a bit.

We seem to have the hardest time taking simple little day trips anywhere with my 3yr old grandson cause we always seem to arrive at naptime, or hes a bear cause he missed naptime, or we cant leave till after naptime and then its too late to bother.........how do you it with all your little ones? Everyone always looks HAPPY! :-)
Well, I don't usually take pictures when they're NOT happy, but I have to say, both Kennedy and Keeghan nap GREAT in the stroller (or wheelchair) which makes it easy to go places. The only thing that's hard at naptime is if they fall asleep in the car and we have to get them out. We try to avoid that.

Okay, Joe wants to know which place (for Cheese steaks) is the best?
We really like Geno's... weren't too impressed with Pat's and we really like Sonny's. We now have to try Jim's and Steaks on South. Yum!

Um, does the woman seated next to the young man (in the Shriner's picture) have her sunglasses on her fez?
Yes. Yes she does. I guess she had to express her individuality somehow! :)

Renee, please will you promise to give Kennedy a big kiss for me?
Sure will!!! She LOVES kisses! :)

I love your favorite one of Keeghan too. Where was that taken? (Picture of Keeghan in front of the bridge)
That was taken in front of the Ben Franklin bridge. I hate that bridge. haha

Is that the infamous blue bridge, lol?
Yes. Stupid bridge.

Is kass wearing a tube top in that last photo...It`s sooo cute!
It's actually a tank top from the Children's Place... came with matching capris. It is REALLY cute! I have better pics of her in it which I'll post later. :)

And I second the exclamation on the long wait to see the doctor. How on earth did you keep Kennedy occupied for all that time?
Fortunately she fell asleep for about 2 hours of the wait time. The rest of the time we read A LOT of books.

That carseat doesn't look very comfortable, don't they have a luxury version?
Haha! I don't think so! We were happy just to have one though! The other option was to have her rear facing. She would NOT have been happy about that.

Is she still on pain medication or is it just OTC stuff?
We've just been using Tylenol, but we have a prescription for Codiene if she needs it.

When does Frank leave?
Friday, July 25th. Same day that the rest of us leave.

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Wordless Wednesday - Precious moments




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Tuesday, July 15, 2008

Kennedy update

We had a pretty lazy day today... Kennedy wasn't feeling great this morning. She was very whiney and running a slight fever. I'm thinking maybe she was in pain. One of her pin sites in the back is also not looking too great. I'm going to check again in the morning and if it still looks bad I'll take her in and have her surgeon check it out. If the pins get infected she needs to be on antibiotics to fight it. Some of the scabs are just falling off though so that may be all it is.

I also discovered last night that she has a small sore on the back of her head... the scab fell of and there is a deep hole under it. The only thing I can think of is that they started to put the halo on there and changed their minds(??). It looks pretty bad and it's so deep! I need to ask about that as well.

All that to say, we laid around most of the morning and ordered lunch in. This afternoon Kennedy perked up some so we walked to a nearby park. They had a swing there that was angled right... almost like a car seat... so we let Kennedy swing for a bit. She loved it. Keeghan also loves the swing, but throws a HUGE fit when we get him out. It's so hard being one! haha

Tonight after the kids went to bed, Frank and I went to a late dinner with some friends and hung out for a bit. It was really nice :). Now we're back in the room and I'm heading to bed! If you think about it, say a prayer that Kennedy's pin site is not infected. I've heard it can be painful!

Watch for new pics tomorrow!

Pictures of Kass, Kam and Keeghan on the 4th

Here are some pictures from Frank's camera.

Taking a dip in the pool

All swam out... or is it swum?

Kassidy... is she falling asleep or what?!

I love this picture!

75% of my Special Ks

What's THAT?!?!

Kass and Kam cracking up

My sweet little Keeghan Bear


More later!

Monday, July 14, 2008

This N That

Hi everyone! Sorry for no update! We have had a busy couple days! Yesterday, Frank had the opportunity to go with some new friends to a Philly's game. They had great seats and a lot of fun! We're going to hang out with them again tomorrow. While he was at the game, my mom, the kids and I went to the mall with my friend Jen and her kids and had lunch and then came back to the hotel so the kids could swim (not Kennedy, of course). After swimming we all walked and got ice cream at my new addiction: Rita's. (I was excited to learn they are opening one soon in Mt. Juliet in TN. I swear that city has ALL the best food... and some of the best people, too! ;))

Today Kennedy had a clinic appointment with her surgeon at 9:30. We got there at 9:15 and waited... and waited... and waited... until 1:00 when we were FINALLY seen! We got out of there at 3:00. They did x-rays, adjusted her vest and drew some blood. Can you believe I forgot to ask what her counts were before we left?! haha I'm sure they'll call if there's anything to worry about. We go back again next Wednesday. Tonight we went to Dave & Buster's for dinner with my friend Stephanie and now we're exhausted! haha We had fun though!

Here is the long awaited picture of her carseat: (She would NOT look at the camera, sorry!)
So see those metal clips on the belt right where the bolts of the halo are? Those completely unthread at the bottom. So we have to unthread them, put her in the seat, put the top half of the belt over her shoulders, through the bars of the halo, and thread them into the bottom half. Then we just buckle the very bottom in like a regular carseat belt. Clear as mud?! You can probably tell the seat is very shallow from front to back... it's made for kids with Spica casts, but it works well for this too!

On that note, I am off to bed. I have TONS of pictures to post so I will work on that tomorrow!

Sunday, July 13, 2008

A Historic Day Part 3

Next we went to see the Liberty Bell

Keeghan was sleeping...


See?


Just the girls


When in Philly...


And here's Keeghan picking a horse's nose. Where is that diaper wipe when you need it?!

That was our fun day in Downtown Philly! We still didn't make it to Independence Hall, but we're going to go back. The line was WAY too long! I also have a bunch of fun pics that Frank took of the kids too while Kennedy was in the hospital so I'll work on those as well!

Thanks for sharing our day with us! :)

A Historic Day Part 2

Next we went to the Constitution Center where we saw a presentation about the Constitution (imagine that haha)




And here's Keeghan chewing on a diaper wipe. Leave me alone, it makes him happy.

They had a room with all the "signers" standing around... so as Kameron said, "We hung out with the old dudes."



That is one cool old dude!


Mr. Franklin himself. I guess.


I think Kameron needs longer hair to fit in.


He looks so important, doesn't he?!


The Consititution.



The kids got to sign it!

Watch for Part 3 later today!!