Today was the last time Kennedy will swim this summer... she loves it so much, so it's kind of sad... but at least she had a good time... and she got to swim with one of her most favorite people - Daddy! :)
Kennedy had her pre-op appointment at Shriner's this morning and I think we're all set to go. They're a little concerned about her diarrhea, but since it's been going on for almost 9 months, and the fact that the Flagyl DID stop it when she was taking it, they're going to go ahead with surgery. Thank God! I do need to call her GI in Cincinnati though about getting her more Flagyl.
Because of her history of aspiration and slow gastric motility, Kennedy will be taking Reglan for the next 2 days and we will be thickening her liquids for awhile after surgery to ensure she does not aspirate. It wouldn't be good to get pneumonia right now!!
They did some blood work today, which she was a champ for, of course! They took an x-ray of her neck and tomorrow sometime they are going to do a CT of her head. They've done a few CTs of her neck but he wants to do one of her head to ensure that there are no blockages where they want to put the pins for the Halo.
I'm still not sure what time her surgery will be on Wednesday, but I'll let you know as I know!
I have gotten several emails from people asking for an address to send things to Kennedy. Here is the address for the hotel, then Frank or my mom can get the stuff to the hospital to her.
Renee Garcia C/O Holiday Inn Historic District 400 Arch Street Room 736 Philadelphia, PA 19106
OK we are off to take the kids to see Wall-E. Pictures coming soon, I promise!
Tonight, my mom stayed at the hotel with the kids while Frank and I went on our first (and only) date of 2008! We went to one of our favorite restaurants - The Melting Pot! Our friend Lisa and her mom gave us a wonderful gift card to use there so we have been looking forward to it for a long time! We ate good food, talked about the kids and laughed a lot. It was nice to spend time together that didn't involve typing in an instant message screen! Thanks Mom for taking care of the kids!
Hey ladies and gents! Pop on over to Of Books and Boys and check out her neat giveaway! It's for a childhood cancer awareness pin, which of course I think EVERYONE should have! Check out her blog while you're there! It's a good one! :)
One year ago tonight Kennedy was inpatient at Vanderbilt while she went through a round of chemo. Right next door was Kennedy's little friend Charlie. One year ago tonight Kennedy had finally mastered how to say Charlie's name. And she said it over and over and over... "Hi Charlie! Hi!" She was so proud!
One year ago tonight I went out to fill my water cup and waved goodnight to Charlie and his mom, Kim. Charlie had a nose bleed, which was not uncommon for him. The nurses were trying to stop it and Charlie was saying "No more tubies in my nose, Mommy!" I told them I would see them in the morning and went to my bed/couch. One year ago tonight I had a horrible dream. I dreamt that Charlie passed away. I woke up in a panic and chastised myself for having that dream. I contemplated getting up and checking on Charlie, but again I told myself I was being silly and after laying there for awhile I forced myself to go back to sleep.
One year ago tomorrow I awoke to another 6A mom telling me that Charlie was gone.
"No," I said. "That was just a dream." And I turned over to go back to sleep. But it wasn't a dream. Cancer had claimed the life of another innocent child... Charlie... who, even though he was on complete gut rest and couldn't eat, LOVED to talk about food. Minestrone soup and sandwiches. Charlie... who knew that a band-aid could fix just about everything. There were Charlie boo-boo bandaids covering 6A... and covering many of the people who lived and worked there. Charlie... who could sing, dance and strum a guitar like only a true rock star could. Charlie... who loved Buzz Lightyear more than just about anything... except maybe his baby sister... who he barely got to see due to being stuck in the hospital.
And just like that, Charlie was gone. And our hearts were broken. One year ago today was one of the hardest days of my life. I can't remember when I've cried harder, when I've mourned deeper, when I've questioned God so much. One year ago tomorrow, my daughter woke up and asked to ride her car in the hall. She immediately rode to Charlie's room and called out, "Where are you, Charlie??" She rode to the play room and burst in yelling, "Charlie!" Only to find it empty. She never could understand where her friend went, I know where he is... but I don't understand either. I don't think I ever will.
We miss you SO much Charlie. And we love you. Someday, someone will find a cure... and you'll be jumping for joy up in Heaven. I can't wait for that day. Cancer sucks.
The Garcia Family is together again! :) My mom, the kids and I arrived in Philly around 10:00 this morning. You can read about our oh so wonderful flight on my blog. Frank arrived around 3:30 so I went to pick him up, we got hopelessly lost in New Jersey (Yes, I know, different state... stop laughing!) but thanks to my friend Stephanie, we are back at the hotel safe and sound! The kids were SO excited to see Daddy, of course! Kennedy said, "DADDY????? DADDY!!!!!!!!!!!" It was so cute! Kass and Kam were hanging all over him and Keeghan wasn't too sure what to think at first, but now he is warming up. SO we are going to hang out this weekend. On Monday Kennedy has a pre-op appointment and then on Tuesday Kennedy and I have to check in to the hospital at 2PM. Surgery is Wednesday morning... not sure what time yet. That's the latest, pictures coming soon! Pray pray pray! I am thankful my husband is "home" safely!
Yes, it's true. Today we were THE family. You all know who I'm talking about... we were the family that walked onto the airplane and everyone took one look at us and groaned. They rolled their eyes. They sighed and tried to find a seat as FAR away from us as possible. You can hardly blame them... a baby, a toddler, 2 kids, a frazzled mommy and a grandma trying to keep everyone in one place. Yes. That family.
So we found our seats and struggled to get everyone seated, with their carry-ons, and tried hard not to whack the people in front of us in the head... we succeeded with that, mostly. Finally we were all seated, ready for take-off... when it started... the baby starts fussing... and all those who groaned before now groan a little louder. Slowly but surely the fussing gets worse and worse until the baby is having a full on meltdown... and some passengers glare, some cover their ears, some avoid eye contact at all expense. But still, you know they are ticked. Really ticked.
And the baby screamed. And screamed. And squirmed. And kicked the seat in front of him. And then he laughed for a bit. And then as we were getting ready to land and the cabin pressure changed, he screamed harder. And people got madder.
Then the plane lands and the sweaty, frustrated mom with tears in her eyes, holds the sweaty, frustrated baby who's ears are killing him, and they sit there... while the plane empties... and one by one the passengers file past their seat with the accusing look... "YOU ruined our flight. How DARE you let your baby cry. WHY didn't you make him be quiet?" *sigh*
And finally they are able to exit the plane. And the flight attendants cheer. And out of sheer exhaustion the baby falls asleep in the stroller. And the mom and the grandma breathe a sigh of relief. And they head to baggage claim where they get more glares. More condescending looks. More irritation. We were THAT family. I'm so glad we don't have to do it again for 28 days!
PS. Frank is back on U.S. soil! He should arrive here soon!
Just a short Q&A since I have a feeling the next one will be long! (This is a scheduled post)
What a fun field trip day!! How did you create the picture album on here? The picture album was created by uploading pictures to Picture Trail and then I created a Photo Flick. Try it! it's lots of fun!
So poor Kennedy is just finally growing her hair back and now she has to have it shaved off? That stinks. Yep... "stinks" just about covers it. I'm trying not to think about it too much... and hey, at least it wasn't back to being REALLY long already, right?! *sigh*
Just out of curiosity, is someone helping you pay for all this? It must be awfully expensive to pull all of these appts and hospital stays off! Ohhh yes, and I'm going to do a huge post about all this in the next week or so. The Lord has brought some amazing people into our path who have been a HUGE help! Watch for that post!
see you soon! Do you still have my cell, or should I email you? Yes, PLEASE email me, I stink at saving stuff like that!
Isn't putting words in the subject (on Wordless Wednesdays) cheating? :o) NO! OK Maybe.. but it's my blog and I'll cry if I want to... no wait, I mean... It's my blog and... well heck let's face it... I can't not type something, it goes against my DNA! :o)
how do you keep the barrette in her hair? i need some tips! Well, I can pretty much talk Kennedy into anything with the words "pretty" or "princess"... "Oh Kennedy! Your clippie is SO pretty, it makes you look like a princess!" And she is sold and the clippies stay in! She then goes to Kassidy and Kameron and says "Look, I PRETTY!!!" (And heaven help them if they don't gush over her! haha)
Do you have any videos you can pop in for them? Is the Wii all packed up already? And how does a cable company run out of cable boxes? That is the craziest thing I've ever heard of. So if you have no cable box now will they still charge you for the use of a cable box? Well they survived with no TV... imagine that! haha The Wii is already in Philly safely. As far as the cable company having no cable boxes... I have NO idea. Seems crazy to me too. They did take the charge off my bill though, so we'll save a little money this month!
Now where are the pics of mom's new do. hahaha wellllll I promise to be in some pictures in Philly! :o)
I decided to make a button for Kennedy... If you want, you can grab the code below and put it on your blog or carepage or caringbridge page or whatever! If you don't want to, that's ok too! :o) Be sure to go to my blogroll and see all the buttons for the other kiddos out there!
Be sure to right click on the box below and then select all.
PS. Thanks to Rebecca for helping me with the text box! :o)
Edited to add: If you can't make Kenn's picture fit in your side bar, try this code...
So when Kennedy and I were getting our hair done, our hairdresser told me that last week two women left their kids in their cars while they went to tan at the tanning salon next door. There were 4 kids ages 3 weeks up to about 2 years! One of the ladies in the hair salon called the cops... who took over 10 minutes to respond.
When the policeman arrived he found one of the cars running with the doors unlocked! One of the toddlers was rolling all over the car and the cop found a knife under the front seat! What if the child had found that knife?! Makes me shudder to think about it.
So the cop pulled the two ladies out of the tanning salon and asked what the heck they were thinking... their response? They didn't have a choice because their husbands are in Iraq. (And Heaven forbid they don't have a TAN!) The cop then told them he hoped that tan was worth it because they were both under arrest. Only then did one of the mothers get upset.
I can't imagine their husbands getting THAT message from their commanding officer: "Soldier, your wife has been arrested for child endangerment for leaving your child alone in a hot car, which was running... unlocked... while she got a TAN." They must be so proud.
So remember my refried refrigerator? Well last night, my cable box all of the sudden stopped working. Keeghan was next to it so I thought maybe he hit the power button... he does that often. I tried to turn it back on and it didn't work, so I went over to the box and scooted it out only to find *gasp* LIQUID coming out of the box!! Turns out that Keeghan thought it would be a good idea to put his bottle in top of the box... and apple juice dripped in. :( Being the smart person that I am, I thought I better unplug the box. I can't reach the outlet so I pulled the chords from the back of the box... and shocked myself. My hand is all tingly and I feel a bit like Tim Taylor! haha I called the cable guys but there was nothing they could do, so they told me to go to the cable office and they would swap boxes for me.
I went to the cable office at 8:00 this morning only to find that they have no more boxes and likely won't for awhile! Which means no TV for us! Good thing we're leaving for a month huh?! They also informed me that my cable box costs like $400 which is my responsibility to pay for since Keeghan caused the frying. *sigh* Fortunately the woman had compassion on me and talked to her manager and they waved the fee. They told me to keep my son away from the box! WILL DO!!!
So we are now living in a tv-less house... will we make it for the next 18 hours with no Elmo... no Wow Wow Wubbzy... no Hannah Montana?! Did I mention yet that it's a good thing we're leaving tomorrow?!
Well Kennedy and I went to the beauty salon today to get our hair done. We had to get the back of hers shaved pretty short so the surgeons can put her halo on next week. Fortunately a new friend who's daughter had this same surgery several years ago sent me some pictures so I knew what to ask for. So, here's Kennedy's new haircut. It makes me sad that we had to cut it just as it was growing back, but she still looks cute! Sorry the pics of the back are so blurry, I couldn't get her to stand still!
Hi everyone!! Well we are getting ready for Philadelphia! Our plane leaves bright and early Friday morning! Crazy!!! Frank should be meeting us there on Friday if everything goes as planned on his end. Kennedy had clinic today and her counts were pretty good, her white count and neutrophils were a little low, but nothing to be worried about... so she's officially cleared for surgery. We will get to Philly at 9:30 Friday morning and then we have a few days to relax and enjoy some family time. Kenn has a pre-op appointment on Monday morning and then will be admitted on Tuesday afternoon. Her surgery will be very early on Wednesday morning. I'm not sure what time yet, but I guess it doesn't really matter since we'll already be there. I am assuming I'll have internet access (but you know what they say about assuming things!) so if I do I will update as we get updates. They say the surgery should be between 8-9 hours. Kennedy will be in the ICU afterwards for 24-48 hours and then she'll move to a regular room for about a week, all depending on how she's doing, of course. After she's released we will hang out in Philly until July 25th. That way we'll be there for her first post-op CT scans and stuff like that. On the 25th we will fly home and Frank will fly back to Afghanistan. Please pray for safe travels for my mom, the kids and me and for Frank. Pray that her pre-op appointment goes off with no surprises, and PLEASE start praying for this surgery! My emotions range from being nervous to being excited about seeing Frank to stressing out about packing... I'm a mess! haha We know the Lord is taking care of our sweet girl, as He always has, and I can't WAIT to be on the other side of this whole ordeal! Please continue to pray for Matthew Litchfield as he is having a hard time right now with mouth sores and pneumonia. Pray that he keeps fighting!! Also keep Katherine Arnold in your prayers, she is inpatient and really not feeling well at all. I know she wants to get out of there and go home already! Keep all our other Vandy friends in your prayers too, especially the families of Charlie Porter and Cody Myers (cp: CharliePorter and CodyMyers1). It's been a hard month for both families. I'll post again from Philly and then you'll be hearing from me lots again!! As always, there are lots of new pictures and stories and stuff on my blog. I am thankful to know so many people are praying for Kennedy and our whole family. It means more than anything!
So I'm officially a blog slacker! haha Sorry! We had friends from Georgia in town this weekend... pictures coming soon... then last night I got a bunch of boxes packed up to ship to Philly. We're planning on flying as light as possible!
Today, Kennedy has a hemonc appointment for one last check before surgery and then I'm meeting my friend Jamie for lunch so I can pick up Kennedy and Keeghan's pictures and then I'm zooming back here to meet for an early dinner with more friends!
Tomorrow I need to take Kam to get his hair cut and then Kennedy and I have appointments to get our hair done... she has to get the back of hers shaved :(. *sigh* I also have a bunch of last minute shopping to do...
Thursday we are meeting up with Laura and her crew and doing all our last minute packing.
Friday morning we have to leave the house around 4am and we'll get into Philly around 9:30. Crazy.
The kids are SO excited to see Daddy!!! SO all that to say, I'm way behind on my Google Reader and probably will be all week, and probably won't blog much... but don't forget about me... or these cute kids: We'll be back!
OK The questions have piled up the last few days so here are my answers :).
Does this doc (from Cincinnati Childrens) work with Sally Shott? Yes they are in the same place. Dr. Shott is an ENT and Dr. Yazigi is a GI.
Oh Kennedy! Is this girl always so cheerful and full of joy!? =) Yep, pretty much she is... when she's not whining... the whining drives me CRAZY! LOL
Is it me, or do your sons have the same smiles? haha yes they do! Keeghan is definitely Kameron's "Mini-me". LOL
They (the kids) all look so much alike. How do you get all of them to look at the camera? Well... if you noticed that was actually 4 different pics all together... trying to get all four of them in one pic makes my blood pressure rise! haha I did get one of those too, though... but it's not very good! And Kenn and Keeghan were both strapped in strollers for that picture! LOL
I come by occasionally but came today to see how you were coping with the flooding as Clarksville was on the national British news so I guess the situation is pretty bad. How close are you to the flooding? Is Clarksville flooding?! It hasn't rained a drop here! I bet it's not Clarksville, TN...
where did the list of kids go??? or maybe I missed why they are gone from the side bar!?!?!? They are still here! Under my logo you'll see tabs, click on the tabs "Kids with Cancer" and you'll find them all! :)
A lot of hotels usually have some sort of game room or something, does this one? I think the bigger question is how do you pack for four kids and yourself to stay in a hotel room for 28 days so you can actually carry all of your luggage and your kids through the airport by yourself. I am not sure if this hotel has a game room or not. I'll check into that. I do know there is a place where they can hang out at the hospital and play games. And my mom is flying with me :). I won't be alone. I'm also thinking about shipping some things ahead to to Philly so we won't have to lug it all.
Ummmm....How about takin' the Grandma with you?? She can keep the kids occupied for hours!! Uh yeah, that was the plan... but then who's going to occupy the grandma?!
When does dad get back from Iraq? He will be meeting us in Philadelphia on Friday... providing his travel goes as planned, of course!
So I am thinking I never saw any pictures of this blessed event (my wedding)! Can I put a request in for them? Ahhhhh maybe. Haha Our photographer was horrible not very good, and I don't think I even have pics online. Let me work on that and I'll get back to you! ;)
How 'bout if I make sure to pray for you each day you're there??(In Philly) That would be awesome!!! We'll take all we can get! :)
Dad will be there (in Philly) to entertain part of the time too, won't he? Oh yes, Frank will be there the whole time and my mom will be there part of the time at least.
Didn't you end up buying her (Kassidy) a huge castle at Disney Land too or was that her Christmas present that year or something? Yes, that castle is SO cool! That was for Christmas though. She and Kennedy still play with that thing. Best $70 we ever spent! haha
Thanks for sharing that story (about Kassidy potty training). I assume I am the blog you were visiting that reminded you of this? YES! I was just too lazy to go look for your link! haha sorry!
by the way, how did you get the photo flipbook on your blog? That came free from Picture Trail. Just upload your pictures and click on "Creat a Photo Flick". There are TONS of designs!
While we were in Cincinnati we got to meet up with our friends Tom and Lisa and their cuties Elijah and Mara. Tom is a fire chief and he graciously let us come hang out at the fire house with them. The kids had a GREAT time seeing the trucks and meeting the other firemen and even got to go on a ride around the block. Even Keeghan was awestruck by the big trucks! We ate some pizza from La Rosa's with them and let the kids run around. We all had a wonderful time!! Thanks Tom and Lisa for a fun morning!!
Here are some pictures from the day, you can click on any of the pages to pause it or go forward or backward. (For you RSS readers, there's a slideshow here!)
I haven't done a Blast from the Past in over a month! Sorry!!
I was reading on another blog about potty training and it brought back memories of potty training Kassidy.
Kassidy was SO stubborn... she was 3 years old and absolutely refused to potty train. We tried EVERYTHING: rewarding, punishing, bribing, begging, EVERYTHING to get that kid to just PEE on the potty. She didn't want to wear panties and there is absolutely nothing we could do. We would tell her that BIG girls go pee on the potty and she would say, "No... no they don't. Big girls like diapers." *sigh*
FINALLY We were getting ready for a trip to Southern California and I told Kassidy if she wanted to buy toys at Disneyland then we had to stop buying her diapers and she'd have to start going on the potty. Guess what? It worked! Just like that she was potty trained day and night and never looked back. Punk.
Fast forward a few weeks to Disneyland, I gave Kassidy a $10 bill and told her to pick something out in the store. She picked out a book that played music and went to pay for it. She handed the cashier her book and her money and said, "This is my diaper money. My mommy can't afford to buy them anymore." Yeah. That's what I get. But whatever, she was in panties! *sigh*
Please continue to pray for Gary Linfoot and the Linfoot family. Gary is now at the Spinal Cord Rehabilitation Center at the James A. Haley Verteran's Hospital in Tampa, Florida. He is paralyzed from the naval down. The spinal cord is still in shock so please pray for him to get feeling back when the cord comes out of shock. You may visit his caringbridge page for daily updates on his progress or to leave a message.
Allyssa (their daughter) has a 3 week break from school so she is traveling home from California today to take care of Kylie and Hayden. All 3 kids will travel to Tampa next Monday through Friday for a visit. Please pray for travel mercies and strength during this difficult time.
I can't believe we are leaving for Philadelphia in ONE WEEK! Have I packed? Nope! haha But I've been doing laundry all day and trying to get myself organized. Stop Laughing.
So here's the thing... we're going to be living in a hotel. For 28 days. With 4 kids. Are you running scared yet?! haha So all you moms out there, tell me what to take... the kids are 8, 6, 4 (although Kennedy will be in the hospital for most of the time), and 1. We're taking the Wii and of course there's always the pool on the roof, but what should we have to keep the kids occupied IN the hotel room? I bought Kass and Kam a bunch of books from the AR list to read, but Kameron gets bored easily haha.
So if your kids were going to be in a hotel for a month, what would you not be able to live without?
And PS. For everyone who commented on my last post, you all ROCK! :)
So I have done a post like this once before, but I think my reader list has grown considerably since then, SOOOOO today is Blog Lurker come out of the Closet day!
If you read my blog and comment every day, leave me a comment here... If you read my blog and only comment once in awhile, leave me a comment here... If you read my blog and have NEVER commented, leave me a comment here... If this is your first time to my blog, but you think you might come back, leave me a comment here... If this is your first time to my blog and you are NEVER coming back, first tell me why and then leave me a comment here... If you fall into none of the above categories, but you're somehow reading this post, leave me a comment here...
I have been tagged a few times in the last few weeks and I thought I better get on this already! haha
This first one came from Lisa at What Have I Done. I have done a variation of this meme here and my answers were different this time! hahaha The Rules
Each player answers the questions about themselves. At the end of the post, the player then tags 5 people and their names then goes to their blogs and leaves them a comment, letting them know they have been tagged and asking them to read your blog. Let the person who tagged you know when you have posted your answers
What were you doing ten years ago? Ten Years ago Frank and I had just gotten engaged. I had just ended my Freshman year at California Baptist University and we were busy planning our wedding! We spent the summer in Wisconsin where my mom lived at the time and worked the summer away. I also had my wisdom teeth pulled. Fun times! haha
What are five (Non-work) things on my to-do list for today? 1. Get my email box cleared out a little 2. Get my piles of clean towels put away 3. Catch up on laundry from our Cincinnati trip 4. Maybe take a nap?! haha 5. Start packing for Philadelphia
Five snacks I enjoy! 1. Cherries 2. Chips and salsa or dip 3. Buffalo Wings 4. Ice cream 5. Banana pudding
Things I would do if I were a billionaire 1. Buy a nice home and car 2. Buy my own gas station 3. Donate a bunch to Down syndrome and Childhood cancer research 4. Donate a bunch to my church 5. Help families of kids with medically fragile kids
Places I have lived Diamond Bar, CA San Bernardino/Rialto, CA Riverside, CA Napa Valley, CA Clarksville, TN
5 Jobs I have had 1. Babysitter 2. Office clerk and CBU evening college 3. Receptionist in WI 4. Receptionist in CA 5. More Babysitting
Monica tagged me for the 6 things you want to know about me MEME. I did this one here and here so let's see if I can come up with 6 more.
1. I love Boston Market. I am so excited they have them in both Cincinnati and Philadelphia since there's not ONE in TN! 2. I can't stand the cartoon "Max and Ruby". Ruby's a bossy little bunny who needs to realize her brother is smarter than she is. 3. I always stay up way too late and then I'm mad at myself in the morning. 4. I love my yahoo messenger but I'm HORRIBLE about sending people messages unless they contact me first. (Right Christina?!) 5. Kennedy's new whining phase is driving me BONKERS! 6. I really need to clean my kitchen right now, but I don't want to.
Here are the latest questions from my comment sections... Enjoy!
Your blog freezes up on me too sometimes when I try to post a comment. I wonder why that is? Man, how about now that I've switched to my new domain? Is it still freezing for anyone?
I hope we can meet up when you come to Philly, Do you still have my phone # I sent you a whle back? That would be so fun! Send me your number again, just in case. I'm bad about saving things!
Is your facebook name Renee Garcia? Yep, sure is!
I never thought about having to alter shirts to fit a halo! Do you have a friend or a reasonable priced seamstress nearby who can help with that? I do have a friend who has been working on some stuff and then someone else is going to send me a pattern in the mail to make more... it definitely won't be made by me though! haha
What a relief that your mom is around to take the kids for you. Think she might want to come help me out with my kids, hehehehehe? Hmm I could ask, but I keep her pretty busy! ;)
What were you doing updating the page when you were in such pain?!(With my migraine) Now is there anyway to PREVENT them in the first place?! Well actually a lot of those posts were created way ahead of time and just posted later ;). As far as preventing them, they are usually brought on by ingesting something with nutrasweet. I am not sure what I got a hold of this time!
So, now that you've seen it (Kung Fu Panda), do you think it's weird that it's getting really good reviews from the "experts?" Yes, actually. Though I have several friends who loved it too... I dunno, just not my style I guess!
Emery has the poops right now..praying it is only teething but I thought of you and hoped you would have some advice! Haha I'm so honored to be thought of when kids poop! You're not the first one to say this either! LOL So funny! Try the BRAT diet... Bananas, Rice, Apples, Toast. I hope she's better by now!!!
Was his (the OMG boy at the movies) mother there or did she dump him off while she went somewhere else? He was there with his father... didn't seem to phase him one bit. @@
A 4 hour nap? Did he (Keeghan) go to bed last night? He usually doesn't take that long of a nap, but it sure was nice that day! He actually did go to bed at a reasonable hour, too!
It looks like Frank has an upsidedown colander on his head (in our sticker family picture) - or are those antennas? haha it's supposed to be an Army hat! Frank informed me it's the wrong rank!
did u forget braska bear? (on my blog roll) Yep, I did! I knew I would forget a couple people! I fixed it though! (Sorry, Braska!)
how did you do that across the top? (of my blog) I have NOOOO idea! Rebecca did it... maybe she can answer in the comment section?? I've also heard you can do a search for "Blogger Navagation Bar"
And do you always dress the girls alike? Nope! LOL I just usually take pictures when I DO! Wait till you see the kids at the zoo! haha Kassidy actually still likes to match Kennedy, so I'm taking advantage while I can!
So how many of them (Cicada bugs) did you kill?! Actually none... One flew into our car though and Kam took his shoe off and killed it. I told him he would make his wife very happy someday! haha
What are you doing the last week of August? As far as I know, nothing! Keep me posted on your plans!
So, your trip to Phila is.....? We fly out on June 27th... Surgery is July 2nd and we'll be in Philly until July 25th.
So glad your trip went well and that you like the new doc. So how was the pool? And where was the pool? Thanks! The pool is on the roof... but in Philadelphia... and we were in Cincinnati! LOL Our goal is to make it to every major Children's Hospital in the country apparently! LOL
So where are the pictures?!?! :) I know, I know! I'll try to work on those tonight!
Is he nakey in that picture? LOL Nope! Just can't see his diaper for some reason. Although he DOES like to take his diaper off!
I would love to hear more about your life with your husband in the military. When will he be home? how long has he been gone? Ahhh life in the Military! I could write about 100 posts on this alone! The summary though is that Frank joined the Army in 2003, he went to boot camp, AIT (tech school) and then straight to Iraq. In February 2004 we moved from California to Tennessee where he is a member of the 101st Airborne at Fort Campbell. He went to Iraq again in 2006 and then left for Afghanistan on December 28, 2007. He is set to come home in March 2009. He will be home for Kennedy's surgery next month though!
Keeghan has been kind of at a stand still developmentally for the last month or so and we've just been waiting for him to take off... Today was the day!!!
This morning, Keeghan finally decided that just MAYBE a sippy cup is not so evil... and guess what? Liquid comes out of that too!!
This afternoon, Keeghan did something we have been working with him on forever - he took his first steps!!! He's only taking a few at a time and will only walk back and forth between either Kassidy and me or my mom and me, but he'll be off and about soon and I will be wondering why I EVER wanted him to walk!! :) I was so afraid I was going to miss his first steps while I was in the hospital with Kennedy, so I am SO excited he's doing it now!
This evening, during dinner, Keeghan started clapping his hands! He's been clapping on his thighs for awhile now, but he finally brings his hands mid-line and claps! A PT would be proud! (Right Leslie?!)
Then tonight before bed he picked up my phone, and instead of eating it, he put it to his ear and started babbling! YAY no more drool in my phone!
Now if I were a good blogging mommy I would have pictures of all these things, but I thought about it too late... sooooo pictures to come later!
A couple weeks ago my mom was going to come over here to watch the kids while I went and got my nails done. I asked Kassidy if she would like to go with me for a little "girl's night out" and get her nails painted too. I thought this would be some fun one on one time with my oldest daughter where we could hang out, talk, and do something she had never done before...
So my darling daughter rolled her eyes and said, "Honestly, Mom, I think that's kind of stupid."
Fine then. I remember when I used to be too cool for my mom too. Haha
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!
OK all you parents out there... surely you can add to this one! Leave a comment and I'll add it to the list!
You know you have a child with Special Needs when... (Started by Carol AnCel and added to by the members of the Downs-Heart Listserv)
You compare ER's instead of grocery stores. You compare your child's oxygen saturation's. You view toys as "therapy.' You don't take a new day for granted. You teach your child HOW to pull things out of the cupboard, off the bookcases, and that feeding the dog from the table is fun. The clothes your infant wore last fall still fit her this fall. Everything is an educational opportunity instead of just having plain old fun. You cheer instead of scold when they blow bubbles in their juice While sitting at the dinner table (that's speech therapy), smear ketchup all over their high chair (that's OT), or throw their toys (that's PT). You also don't mind if your child goes through the house tooting a tin whistle. You fired at least 3 pediatricians and can teach your family doctor a thing or two. You can name at least 3 genes on chromosome 21. (You really know your toast if you can spell the full names correctly) You have been told you are "in denial" by at least 3 medical or therapy professionals. This makes you laugh! You have that incredible sinking feeling that you've forgotten SOMETHING on those few days that you don't have some sort of appointment somewhere! You get irritated when friends with healthy kids complain about ONE sleepless night when they're child is ill! Your vocabulary consists of all the letters OT, PT, SP, ASD, VSD, IFSP, IEP, etc. You keep your appointment at the specialist even though a tropical storm is raging because you just want to get this one over with.....you waited 8 months to get it.....and besides, no one else will be there! Fighting and wrestling with siblings is PT. Speech therapy occurs in the tub with a sibling. When potty training is complete, you take out a full-page public notice in the Washington Post. When the Doctors/Specialist/Hospitals etc. all know you by your name without referring to your chart. You keep a daily growth chart. You calculate monthly statistics for the number of times your child vomits, and did this for more then one year. You phone all your friends when your child sits up for the first time, at age two. With a big smile on your face you tell a stranger that your four year old just started walking last week. His medical file is two inches and growing. You have a new belief...that angels live with us on earth.
So in the middle of the night, Kameron came into my room and said, "I think I'm going to throw up." There's nothing like a wake up call that includes puke! So after Kameron threw up he insisted he felt much better and went back to bed with a bucket. This morning I heard him in the bathroom and it seems the virus had hit the other end. I went in and asked if he was ok and he said, "Yes, my butt is sick though!" LOL He must get it from his father!
This sweet little boy is Rhett. Rhett has Down syndrome and has had many, many surgeries, including one where he was overdosed with medication and nearly died. Today he is having another surgery and, understandably, his mom and dad are worried! Please stop by Rhett's page and let them know you are praying! I know they will appreciate it!
This little guy is Isaiah and is one of our Vanderbilt buddies. Isaiah has Aperts Syndrome and has been through his own share of surgeries. The most recent surgery, in April, was a facial reconstruction which left him with pins in his head. One of these pins has become infected and he now has bacterial meningitis and is a very, very sick little boy. Please stop by Isaiah's page as well and let them know you're praying!
Both of these sweet boys have been through so much in their short lives and we are praying they will both overcome these latest hurdles and be able to go home healthy and happy!
I just wanted to say HAPPY FATHER'S DAY to my dad, my grandfather and my husband! I'm sorry we couldn't be there with you (especially because that means we'd have to be in 3 places at once and I'm pretty sure Afghanistan wouldn't let us in. haha) We love you all so much!
For the last 3 years, Kassidy and Kameron have had close friends by the name of Kenya and Shuteye. Yes, you read that right. Kenya and Shuteye are brothers, and man, are they a handful! They are always breaking things and causing trouble everywhere they go. They are especially loud during car rides and I often hear Kass and Kam fighting with them. They are also not very bright. I think in their 3 years of friendship they have never won one game against Kassidy and Kameron. I think those poor boys need a tutor.
However, there is a lot of good to Kenya and Shuteye too. They have provided hours and hours of companionship and endless entertainment to my two kids. They are willing to play anything, and eventually they always help clean up their messes. I have never grown tired of hearing all about their antics and have even been asked to babysit them on occasion. They are almost like a part of our family.
So, imagine my surprise last night when Kameron started telling me about Sammy who is Kenya and Shuteye's cousin. He was telling me about Kenya and Sammy but never mentioned Shuteye so I asked about him and he told me that Shuteye is gone. I asked if he was coming back and he said he wasn't sure. He didn't seem sad about his friend being gone at all, but I have to say, his departure was so sudden I felt like I deserved some answers. So I asked Kameron where Shuteye went and he said, "Back to the crazy place in my head!" And then of course hilarity ensued on his part! haha
If you haven't figured it out yet, Kenya and Shuteye are imaginary friends, and now it appears, Shuteye is gone. I have totally mixed feelings about this! haha I guess we shall see if Sammy sticks around or if Shuteye returns, but I certainly hope Sammy is more well behaved!
We are home safely. We had a good time in Cincinnati but I'm glad to be home and am looking forward to sleeping in my own bed tonight!
Onto Kennedy's appointment: She saw Dr. Yazigi (which I now know how to pronounce! haha) and I LOVE her!!! She explained that after chemo it can take a year or two for an immune system to REALLY be back up to par. She also said that since Kennedy had C-diff at the end of her chemo treatments, this was most likely the culprit. The hemonc clinic and Kennedy's pediatrician have both tested her for C-Diff but it came back negative. Dr. Yazigi said that once you have it, it can still linger and not show up on tests. SO she put her on the anti-biotic, Flagyl, which is what cleared her C-Diff before. She said that it may take several courses of Flagyl to clear this up, but we're praying hard that it works!
She also gave me a lot of helpful information for Kennedy's upcoming surgery. Because Kennedy has a history of aspirating thin liquids she said that we should thicken her liquids after surgery for a few weeks, just until we're sure she's eating and drinking ok. She said it would be so horrible for her to get pneumonia while recovering from a surgery like that. I would definitely have to agree!
She also mentioned not to be upset if Kennedy required a feeding tube for awhile after surgery because often kids stop eating... but they warned me about that while she was going through chemo too and she always did GREAT, so I'm not too worried about that!!
She also wants Kennedy to have an upper GI done at Vandy before surgery. haha I told her good luck! She was going to talk to her GI there and I told her she'd be better off with hemonc, so I think she's going to call her oncologist. The purpose of the Upper GI is to make sure there are no structural abnormalities that would cause any problems during or after surgery. For those of you who have been following Kennedy for a long time, you may remember she has several vascular anomalies that no one can really explain.
She also ran blood work and said they would call and let me know the results in about a week. She was specifically checking her immunoglobins and if they are lacking she will recieve an antibody called IVIG which she has had before, and is really no big deal. It will just give her immune system a boost which may not be a bad idea before surgery!
Anyway, that's about it! I was SO relieved to FINALLY get some answers and feel like we're getting somewhere. Dr. Yazigi was SO much help and we are going back to see her at the end of August, but in the meantime we'll be in contact over the phone.
After her appointment, my mom and I took the kids to the zoo and had a GREAT time! Keeghan really loved looking at all the animals, especially the monkeys. It started pouring before we got all the way through the zoo, but we still had a good time. Today before we left, we met up with our friends Tom and Lisa and their beautiful kids. Tom is a fire fighter so we met him at the station and got a grand tour and even a ride on a fire truck! The kids absolutely loved it! Then we hung out and ate pizza before the long drive home. So much fun!
So as we drove into Cincinnati we saw big flying bugs... EVERYWHERE! At first we thought they were bees, which scared the heck out of me! haha But once we arrived at the hotel we opened our door to the deafening sound of the Cicada bugs. They were EVERYWHERE! I had heard about them coming out by the thousands, but in TN we have a few here and there and that's it... let me tell you... as we tried to unload the van we had them on our clothes, in our hair, just swarming us! GROSSSSSSSS What do you think? Would you like one of these things on you?!
PS. I'll post about Kennedy's appointment later... maybe tomorrow, I'm exhausted and the kids all need baths!
So, how many of you have noticed that my blogroll has slowly been disappearing today? How many of you noticed that I now have tabs on my blog right under the "Life With My Special Ks" logo? How many of you CARE?! hahaha
So you can now find all the blogs I read on the blogroll page, all categorized. I am SURE I've missed someone, so PLEASE let me know and I'll fix it.
I also will be moving a lot of the other links off my sidebar in the next few days and completing the other pages up there. I think it makes my blog look less crowded.
And this BIGGEST news!!! I bought my own domain! YAY!!!! You can now find this blog at www.myspecialks.com, so change your bookmarks and all that fun stuff!
OK I'm off to pack! Kennedy has her appointment in Cincinnati on Friday so we are leaving bright and early tomorrow.
A HUGE thank you to Rebecca for helping me with my blog today!
Please continue to pray for Gary Linfoot. His is still recovering at Walter Reed Army Medical Center. Gary will be transferred to a spinal cord rehab facility in Tampa, FL within the next few days. He is still paralyzed from the belly button down. His spinal cord is still in shock so the Dr. believes it is possible for Gary to recover some movement and feeling. Please pray for his recovery as we know God is in control. Thank you for your prayers, love, support and acts of kindness.
OK so this has been bothering me for a long time and I need to know if I'm alone in this. When we go through a drive thru to get food which is OFTEN, the person at the window ALWAYS attempts to hand me my drinks one by one. I always have at LEAST 3 drinks, sometimes 4. WHERE does the person at the window think I'm going to put all these drinks?! Seriously! So inevitably I have to ask for a drink holder and every single time, they roll their eyes at me and sigh. I'm so SORRY to inconvenience them, but REALLY?! What am I supposed to do?! Hold 4 drinks AND drive home?! That's safe! GRR Am I the only one this happens to?
We had such a nice quiet afternoon when we got home from the movies. Keeghan went right down for a nap and slept... and slept... and slept... while Kameron and Kennedy hung out on Kassidy's bed doing this:
And where was Kassidy?? She's under that blanket on the couch... and she stayed there for hours... listening to her Ipod (and maybe hiding from her siblings).
I didn't take any pictures of Keeghan sleeping, because I'm not that stupid because he's a very light sleeper and he would have woken up, but man, a 4 hour nap is just NOT good for one's hair: Check out that bedhead!
After Keeghan woke up we went to dinner with my mom and then went back to her house for an evening swim. I love summer!!
Today, my friend Nina and I took the kids to see Kung Fu Panda. I had already been warned that there was violence (hence the name, Kung Fu) but I was pretty sure the older two could handle it. Kennedy happens to think karate is like the greatest thing EVER, thanks to Spongebob, and goes around our house saying "hi-ya!" and chopping my furniture in two... or she at least tries to! And thus I became an enabler because what else are mothers for?!.
My friend Nina however, laughed at me a lot every time I jumped. But sheesh there were bad animals sneaking out of nowhere! What was I supposed to do?! You would have jumped too! Stop Laughing.
I have to tell you though, I am NOT one to go smacking kids around, but there was this boy behind us that talked through the whole movie. And he wasn't a little boy, because really, I understand that. We were there with 4 kids and 1 wiggly baby and it was a kid's movie so excess noise doesn't really phase me much, but this kid! UGH! Everything that happened he said "Oh my God." 19 times he said this. Yes, I'm a dork and I counted. 19 times in 90 minutes... and that wasn't counting all the times he said it during the previews! I didn't count those because I was just at the beginning of my irritation and thought SURELY he would stop once the movie started. Wrong. Approximately every 4.7 minutes we heard it. Seriously, I was ready to turn around and slap him... or throw popcorn at him. Or thump him with my Bible. GRRR
So the movie? It was ok. Kameron loved it, Kennedy got bored with it during the end, and Kassidy just talked about all the movies coming out that she wants to see because she's too cool for "kid's" movies now. It probably won't be one we'll buy, but it killed a couple hours of a summer day, so it was worth it. If you go, be sure you don't sit in front of the OMG boy. He'll totally ruin it for you.
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!
"A Beautiful Life" By: Lisa Peele (A Poem for Bridget by Mom)
Look at me Loving Life Laughing Watching Becoming
See what I can do and All I am
Look closely… Through the soft focus of my life frame by frame You’ll see the essence of things
I see the world in its most perfect state I see the good in things and in people
I see a world of Joy, Hope and Infinite Possibility
Well our poor fridge is fixed FINALLY! Two different oily parts were burning and one actually was completely fried hence the lovely smell that is still invading my home and my freezer no longer working. We haven't lost too much food, thank goodness, and they said the horrific smell should be gone in 2 days. Two days. Bleh. But at least it's fixed and my children can return to their home without gagging. Maybe.
So at 6:00 this morning I got up to get Keeghan a bottle and walked into a horrible smell in my kitchen. I couldn't decide if it was a burning smell or what, so of course I couldn't go back to sleep! So I did what every grownup does and I called my mommy. She came over and said it was a chemical smell. We narrowed it down to coming from the refrigerator, so we put a call in to the rental company (it's times like this that I'm happy to RENT my house!) and they are supposed to be sending someone out.
In the meantime this smell is getting worse and worse! I got Kennedy off to school and fortunately Keeghan is napping upstairs where it doesn't seem to be so bad and Kassidy and Kameron are playing nicely in Kassidy's room... but who knows how long THAT will last?!
I decided while I was waiting, to get another "nose" opinion, so I had my next door neighbor come over and she agreed it's definitely the fridge... then she opened my freezer and it wasn't COLD! UGH!!! SO all the food in the back of my freezer is now in the trash... fortunately I have a deep freezer and was able to salvage some stuff... which reminds me, I left the bag of ice out.
All that to say, they better come soon because this smell is making me SICK!! Anyone out there in blogland want to diagnose my fridge for me?!
Hey guys, So it's been awhile again! My apologies! There hasn't been a whole lot to say... I did forget to mention in my last update that Kennedy had clinic last Tuesday to get her counts checked. How odd that this has become an "oh, by the way" appointment. Seems surreal. Anyway, her counts were great! We need to go back and get them checked again on the 24th just to be sure they are still good before we leave for Philadelphia. We leave this Thursday for Cincinnati. Kennedy's appointment with GI there is on Friday morning. I'm not sure how much good they can do in one appointment but I'm praying they can give us a suggestion or game plan or SOMETHING! Kameron has his appointment on Tuesday with the food clinic at Vandy... again, I'm not sure how much good one appointment is going to do, but hopefully it will be worth it! If you haven't been keeping up onmy blog, there is lots of new stuff on there. Be sure to read this post, especially:Leukemia - The "Good" Cancer. Anyway, I guess that's about it. I'll update before we go to Cincinnati, I'm sure. I've been down with a migraine so I'm off to lay down. I am thankful for my mom who took the kids over so I could sleep!
Well I had been battling a migraine for the last few days and it finally got the best of me yesterday, so my wonderful mom drove me to the hospital where I got a shot of demerol. She took over the kids and I've been sleeping and sleeping and sleeping... and now I'm a little groggy, but my headache is GONE! For those of you out there who don't suffer from migraines, feel VERY, VERY grateful!
Also, I have an address for Gary Linfoot if anyone would like to send cards or anything. Email me and I will give it to you. I don't know much more about his status right now.
AND How could I forget to mention my friend Lynn when I was mentioning large families?! She's the amazing mom of 6 and grandma to more and Caringbridge mom to HUNDREDS! Watch for her at a caringbridge page near you. :)
I'm glad I'm keeping up with these better now... so I don't have a super long post like this one. Here are the answers to the latest questions posted in the comment section. If you've missed some, you can find them all here.
Do you have a picture to go with your facebook acount? Umm yes... I mean, I have a profile pic... is that what you mean? It's our family picture.
Which of your children has got Leukaemia? I actually answered this in email, but just in case there were any other newcomers out there, Kennedy is my 4 year old and she is currently in remission with Acute Myelogenous Leukemia. You can read about her here and here. And you can find all of her medical stuff here.
So where are they putting you up? (In Philadelphia) We'll be staying at the Holiday Inn in Downtown Philly. The manager there has been so gracious and we look forward to our stay... though we wish it were for different reasons!
Also, can you remind us how long she will have to wear the halo? Kennedy will be in the halo for 6 months... longer if she hasn't healed to the surgeon's satisfaction by then... so we're looking at her wearing it until January.
why is it your blog always freezing up when I try to post a comment a second time on a different post.lol Happens to me all the time on ONLY your blog. I have NO idea! Does this happen to anyone else?!
I didn't realize she needed spine surgeries! Why does she need them? Kids with Down syndrome sometimes have a condition in their neck called Atlantoaxial Instability (AAI). This means they have too large of a gap between their C1 and C2 vertebrae in their neck. Usually this just means that they are put on restrictions from contact sports, gymnastics, etc. Kennedy has AAI, but she also happens to have the even more rare Atlanto-occipital Instability (AOI). This is a gap between her skull and her C1. A typical person has a 1mm gap there... Kennedy's is 13mm. Her surgeon said that if we were to get into a car accident, if she were to fall wrong, injure her neck in any way, it would be a "catastrophic event". She is currently in a neck brace (which I usually take off for pictures) to keep her safe until surgery. You can read a little more about it here and always here on her carepage.
Also a couple people mentioned CHOP, Kennedy's surgery will actually be done at Shriner's Hospital for Children in Philly.
Any hope that Mari will set up a caringbridge site (for Gary Linfoot)? I did talk to her the other day and mentioned CB and she said she would look into it. As you can imagine, she is very overwhelmed right now. I'll let you know if she does. She said to thank you all for the prayers for Gary and their family.
Do you consider your family, a large family? Nope I actually don't... my friend Amy has 7, my friend Laura has 9. My friend Ibby has 11 and Christine is about to have 11. I would say we have a slightly larger than average family. haha
Oh and are you handy with a sewing machine? You will need to alter some shirts for Kennedy. I can send you the tshirts we altered when Brant was in the halo if you'd like. They are pretty gender neutral :) hahahahahahahaha NO! LOL I can maybe sew on a button... maybe... but I usually ask my mom to do that for me! LOL You'll be hearing from me! OK that's it for now! More later!
1. I will always, always, always love my children. 2. I will always be annoyed by whining! 3. I will always love California. 4. I will always love summer over winter. 5. I will always be faithful to my husband. 6. I will always be grateful to the Military for all their help through Kennedy's illnesses. 7. I will always love the Lord with all my heart, soul and mind. 8. I will always think gas is too expensive. 9. I will always take quality over quantity. 10. I will always appreciate my mom for everything she does for us. 11. I will always think that teaching a 3, 4 or even 5 year old to use scissors is NOT a good idea. 12. I will always use correct grammar. 13. I will always freak out when I see a bee, hornet, wasp or any other flying, stinging insect. 14. I will always, always, always think cancer sucks. 15. I will always cherish a full night of sleep. 16. I will always love sour candy. 17. I will always love to eat out. 18. I will always be an advocate for people with Down syndrome. 19. I will always be in awe of large families. 20. I will always love Noggin for being available 24 hours a day!
My friend Leigh Ann posted this on her blog and I thought it looked fun so here is mine... if you do one too, let me know!
20 Things I will never do (in no particular order):
1. I will never stop loving my kids. 2. I will never smoke a cigarette. 3. I will never do drugs. 4. I will never like having my picture taken. 5. I will never enjoy cooking. 6. I will never become an alcoholic. 7. I will never skydive. 8. I will never bungee jump. 9. I will never like mayonnaise. 10. I will never say there is a "good" cancer. 11. I will never think it's ok for a spider to be in my house. 12. I will never understand how people think it's ok to kill their baby just because he/she has Down syndrome. 13. I will never understand how anyone can look at Kennedy and see anything but perfection. 14. I will never forget all the Soldiers who fought and died for our country. 15. I will never drive a semi-truck. 16. I will never compare a migraine to an every day headache. 17. I will never forget all the little kids we have lost to cancer. 18. I will never think a snake is cute. 19. I will never think that Kennedy has too many Groovy Girls. (We're SO way past that! haha) 20. I will never stop loving Jesus.
Watch for my next post of 20 things I will always do.