Monday, September 29, 2008

Wild Weekend.

We had a super, crazy, busy weekend. It started Friday night with my grandma's b'day. The girls and I headed on over to Dunlap to celebrate, while the boys stayed back for Jack's soccer game on Saturday.

Saturday morning - to Bishop Hill to partake in their fall festival. We try to go every year because the kids think it's so much fun. We eat in the park and then do all the fun activities like making Corn Husk dolls, making your own brick, making your own popcorn, and many others. Then, of course, a trip to the candy store to stock up on Swedish Fish and German Raspberries!
Brooklyn with her Corn Husk doll.
Making popcorn...

Next on the agenda...a trip to Washington to my cousin's for an Oktoberfest celebration. It was a great time for the few minutes we were able to enjoy it. Olivia wasn't cooperating at all and we left rather early - it had been a big day for her.

TOUCH activities

I wish these two weren't so small. I got them from an email. The one above is actually not a bad shot of all the cousins - a rare find. Tyler, Olivia, Jack, Alais, Brooklyn, and Emmy!Emmy and Brooklyn with their balloon creations.
Sunday - to the T.O.U.C.H. picnic. We look forward to this every year. It's a celebration put on by The Organization for Understanding Children's Hearts. We get to see old roommates, doctors, nurses, etc... and the kids have a blast. There are tons of activities for them to do, a nice lunch, and train rides! It's great to see all the heart kids and see how well everyone is doing when you know they were so sick at one point.
I just thought Olivia was looking super cute today.

Finally - home! At least until our next big weekend...




Kiddo update.

I seriously feel as though I need to dedicate the entire day to blogging. I'm a little behind. I had to go through my pictures from the week to even remember what's been going on. I'll try to hit the highlights...
Jack's biggest news...Do you hear wedding bells? I got a call from a friend asking if I wanted to hear the latest first grade gossip. Now, understand that she doesn't even have a first grader, so this must be good. Apparently, Jack is getting married! Ugh. She just wanted to assure me that the bride-to-be comes from a really great family and that we should get along great. Gee, thanks. Good to know. Anyway, after talking with Jack about the big day, he denied it, of course. I stressed that there would be no vows being exchanged at school unless I received an invitation. I've been watching the mail. Nothing yet. Whew!
Brooklyn - no wedding plans, yet. She's loving school and has made three really good friends. She always looks beautiful and will make sure everyone agrees. It is absolutely hilarious, yet mind-boggling. I don't understand who and where she came from and it definitely makes me fear for the future.
Olivia - doing awesome! Her "cold" is officially gone. She is still getting really good at doing "two-year-old things." She's even been getting into trouble lately. I very sternly said "No, no!" to her the other day. She turned around, looked at me with a huge smile, and then started clapping. Not quite the reaction I had hoped for. Brooklyn immediately said, "Olivia, you are in trouble, but we still love you anyway, right, mommy?"
Olivia is going in for a repeat swallow study in Peoria on Wednesday afternoon. Apparently her symptoms from the pneumonia a couple of weeks ago were textbook for aspiration pneumonia, so we are going to try to rule that out.
I guess that's about it for an update on the kids! We had a huge, busy weekend that needs a post all of it's own, so stay tuned for that.

Monday, September 22, 2008

Pokey appointment...literally.

Livvy went to see the cardiac surgeon for an appointment today. We were to see him at 10:00 with labs before hand, so we arrived at 9:15. Labs were drawn, breakfast was eaten and we were in the office waiting room by 10:00!
Wait, wait, wait.
We waited for the lab results to come back, so we could discuss weaning some medications. Finally at about 11:15, the results were in! She had a great check-up. She was excited to see everyone. The doc was looking for one last lab result, which was no where to be found.
They didn't draw it.
Ugh.
Back to the lab.
During the lab draw, Olivia decided to stop bleeding. Should we poke again? Should we see if the lab will run the test without the full amount of blood? She's already been stuck twice, so we'll wait.
Wait, wait, wait.
Another hour passes and we get the approval that the lab was able to run the test and we were free to go.
All in all a great appointment, just a little pokey.

Thursday, September 18, 2008

My life in a nutshell.

The other day when I was experimenting on the blog, I decided to throw some "ads" on it. Apparently you are able to sign up to advertise and the blog will automatically take subjects from your postings and generate ads that have to do with things going on in your life. I've only noticed a couple of them at the very bottom of the blog. The first one - an ad about bone marrow transplants and the second, ads about pneumonia and asthma. Sure makes me feel like we have a really upbeat blog.
Anyway, Olivia is doing awesome. I have literally never seen her so happy. She's been giggling and is actually doing some very "two-year old things." I think she's going to have a bit of an ornery streak. The countdown is on - only 24 more hours of IV antibiotics and lack of sleep (I hope!) We seem to be doing alright. I thought I may lose my mind last night, but I was able to keep my sanity. We were home not even an hour and a half and all of a sudden Brooklyn thinks she is going to throw up. You've got to be kidding me. Olivia wants to be held, Jack won't do his homework, Zac is at school trying to catch up, Home Health is supposed to be coming any minute to teach me how to do the IV meds, and Brooklyn starts puking. I (gently) throw Olivia down and we sprint to the bathroom and she refuses to puke in the toilet. The sink looked much more appealing.
Gross.
What's so wrong with the toilet? It's not where we brush our teeth every morning. It's easily flushable. It's not like she couldn't make it that far. Anyway, she looks at me and says she's all done and must have drank her chocolate milk too fast. She was off and running and there haven't been any episodes since. I'll take the chocolate milk theory. I call Zac to vent and see why life has to be so complicated, and his only concern...who's sink did she puke in? Don't worry, it wasn't yours sweetheart...
Gee. It sure will be interesting to see what ads this post generates.
Reflux? The Nesquik bunny? Bathroom remodeling? Insane asylums?
Have a happy Friday!

Wednesday, September 17, 2008

No worse for the wear...

Well, we got home about 30 minutes ago and Olivia shows no visible signs whatsoever of any trauma. It looks like we may have escaped the confines of PICU before anyone was able to spark any bad memories!

She's crawling around, playing with all of her toys, jabbering up a storm, and looking around like she's never seen this place before.

Or maybe she's just wondering when I'm going to fix her hair.

We have a couple of IV antibiotics to give her intermittently over the next 48 hours and then we should be good to go, as long as nothing comes back from her blood cultures. (Cross your fingers!)

Slumber party.

If she really wanted to just have a slumber party, we could have invited all the docs and nurses to our house. Looks like we actually get to head back to Macomb today. I could probably delete the last two posts and no one would even know we had to come to the hospital. We'll continue some IV antibiotics at home through her mediport (I guess it is coming in handy for something). The way it's looking, we should be home my mid-afternoon!

Good Morning update

Olivia's doing well this morning. She had a great night. We were literally here about an hour and she snapped back to her old self. Her fever broke all on it's own (no tylenol or anything). She's actually a bit on the cool side today. She is on 3 antibiotics just to cover everything since she is known for getting sick so fast. I'm not sure how long the antibiotics have to run for her to get a full round of them. Two are IV meds, the other is oral. She does have MRSA, so we are in isolation for that (back in those nasty yellow gowns) and she is especially sleepy (probably just catching up from the night and lack of sleep yesterday). Other than that, all is well, I suppose. We'll wait to see what the docs want to do with her today.

Tuesday, September 16, 2008

Just visiting...

Well, we are back up in PICU. That didn't take long. Olivia didn't seem to snap out of her little pneumonia fit from this afternoon and started spiking a temp. We are hoping, however, that we are in for a short stay. Right now, she's fast asleep and actually looks great. She tends to go in spurts. One second she looks totally icky and the next second she's ready to play. Who knows. I'm thinking she caught wind of the fact that I was actually going to leave the house tonight to have some adult conversation at a home party with some friends in G-burg. Next time I get invited somewhere, I'm definitely not letting her in on it.
Anyway, Zac and I are here at the hospital and Grandma C. is with the big kids. If Olivia continues to progress like she has been since we got here, we really shouldn't be here for too long at all. She's on 2 liters of regular oxygen, they are giving her some IV fluids and IV antibiotics, and her x-ray doesn't look horrible. That all sounds promising.

Pneumonia

Possibly pneumonia or congestive heart failure. I'm going with pneumonia since we know her heart is functioning well. For now - breathing treatments and an antibiotic and re-visit the pediatrician in the morning. She is, however, starting to spike a temp, so we'll see what the night brings.
For those wondering where the sneak peek from the photo shoot went...I got nervous that it was copyright infringement, so if you missed it, sorry. You'll just have to buy a calendar!

Rainy weekend review.


Despite the tremendous amount of rain we had over the weekend, we really had a great, unusually relaxing weekend. Here are a few highlights:


1. Friday night, the big kids went to see the High School Musical 2 play in East Peoria with Grandpa and Grandma T. and their cousins. They all loved it - especially the two little ones. Then to the Morton Pumpkin Festival Parade on Saturday morning before coming back home.


2. The Bombers upset Orion on Saturday after being suspended due to lightning on Friday night. (Too rainy - the kids and I didn't attend. One of these days we hope to make a game!) Go Bombers!

3. The big kids spent most of the day Saturday playing in the rain. Jack built a dam in the street and had a blast doing so.

4. We attended Zac's cousins engagement party. They had rented a huge bouncer/slide and all the kids had an unbelievable time playing in it in the rain - couldn't have asked for a better night for it! Wish I'd had my camera and an extra change of clothes - I may have joined them!

5. Sunday - to church and home for a day of playing. I was even able to sneak in a nap in the afternoon! Olivia has a nasty cold and hasn't been sleeping well, which then leads to me not sleeping well. So, the nap was a much needed one.


And then came Monday. Jack woke up barking. Croup? He stayed home for the day, but within about an hour he was fine. I told him he should really go to school, but he was too afraid he may give a germ to a classmate. How considerate of him. I guess we'll consider it a personal day. I don't think he'll be spending much more time at home, though. By the end of the day he was so mad that he couldn't have the neighbor kids over. He didn't quite understand that. He wasn't sick anymore, after all. A direct quote, "Man. I can't do anything at all when I'm sick!" Stomp. Stomp. Stomp.

Olivia's cold seems to be getting worse instead of better. Her respiration's were up quite a bit last night and she was pretty crabby. I cranked up her oxygen a bit, which seemed to help and she's happy as a clam today. I'm taking her to the pediatrician this afternoon to make sure her lungs are still clear for my own peace of mind.

I'll keep you all posted on Olivia's little cold, but I'm fairly confident she'll get through this one on her own.




Saturday, September 13, 2008

Buddy Walk

I feel like all we do lately is ask for support and money from all of our friends and family, so I have to begin this by saying - please, please, please do not feel obligated to donate.

The Heart of Illinois Down Syndrome Association is having it's first annual Buddy Walk on October 4. Most of the family is walking on "Team Olivia Grace."

In order to register online, we were required to make a fundraising page. Please don't think that I don't feel that this is a worthy cause. We really, really do. It's just that we feel like everyone has been so generous to us lately that we hate to ask for anything more. Feel free to check out Olivia's page! If we have a successful year, we'll be trying for an even bigger team next year!!

Click here to be linked to Team Olivia Grace: www.firstgiving.com/juliechatterton

Friday, September 12, 2008

Why try to fix it if it ain't broke?

I decided I wanted to try to get my blog more up to date and try some new things. It backfired. So back to Plain Jane until I figure things out. Bear with me...

Wednesday, September 10, 2008

Completely Bittersweet.

Shout for joy to the Lord, all the earth.
Worship the Lord with gladness;
come before Him with joyful songs.
Know that the Lord is God.
It is He who made us, and we are His;
the sheep of His pasture.
Enter His gates with thanksgiving
and His courts with praise;
give thanks to Him and praise His name.
For the Lord is good and His love endures forever;
His faithfulness continues through all generations.
Psalm 100
I can't believe I am actually writing this post. Dr. Al just called from St. Jude. Olivia's bone marrow results are in. Her cancerous cells have significantly reduced to a point that takes them out of the classification of AML. The cancerous cells are virtually non-existent. She does not have leukemia. Her bone marrow is producing lots and lots of beautiful, healthy, wonderful, new cells. The bone marrow was so stressed and just reacting to how sick her little body was prior to surgery. St. Jude will still keep close tabs on Olivia and repeat a bone marrow biopsy in 6-8 months. It's so hard to believe that we have one of God's great miracles in our lives. We are so truly blessed. The power of prayer is absolutey amazing. Thanks be to God!

Monday, September 8, 2008

Way to go, pumpkin!

Olivia did awesome this morning. Zac said he went in to today expecting the worst and hoping for the best. The best definitely won out! As strange as it sounds, it was awesome to be back up in the PICU this morning. It was fun for everyone to see Olivia "healthy." She is always so sick when she is up there, and today she was happy and playing and even reached out for one of the doctors to pick her up! The biopsy went very smoothly. They knocked her out with some drug that is completely out of your system within an hour. Right about at the hour point, she woke up clapping her hands and grabbing at her feet! Her pressures did drop a little bit while she was out, but nothing major. She was just really asleep. We also saw the cardiac surgeon and he was ecstatic with how well she is doing. I told him I really think he may have fixed her this time. We made a few medication changes and came on home. What an exciting day - the kind of excitement that we like!

Sunday, September 7, 2008

The week in review...

Brooklyn started her second year of preschool on Wednesday. She's loving it. She's made a few new friends, and is hoping to learn their names sometime soon.
Jack started soccer yesterday. It's getting much better to watch. The kids actually pay attention to the game this year!It's kind of hard to tell in this picture, but Brooklyn is full of mud. Why you ask?
She, Jack and the neighbor kids picked all of Zac's new fall flowers and planted them in their own little wheelbarrow planter. What a mess! Today - it was mud fights. Yuck!

And, here's Olivia enjoying the weather in her new ice cream truck that she got for her birthday!

Okay, I promise I'm done posting for the night. I'll post tomorrow when we get home from the hospital. It probably won't be until later in the evening, unless something exciting comes from the bone marrow biopsy in the morning (we don't want anything exciting to come from it. so hope for a post later tomorrow). Have a good day - and again sorry for all the pictures, but it's about time I get these up!

Promised Party Pics...

Tons of pictures - sorry and Enjoy!Happy 2nd Birthday Olivia Grace!The Giant Cupcake Cake!Future problems??Blow out the candles!All this for me? Woohoo!I love puzzles!!!New friends!Emmy, the daredevil!
Love that look, Alaina, but slow down!
Danger Zone.
Anyone for a game of baseball?How about volleyball? Girl power...trying to keep away from the boys!
And now...
for a cupcake!
Yummy!
Olivia didn't share a single smile during her entire party. This is a picture taken about 5 minutes after everyone left. Go figure.

Itsy Bitsy Spider!!!!

I am so excited!!! I had worked for hours trying to get this video up. For some reason, our computer wouldn't oblige. Grandpa and Grandma's would though! Enjoy!

video

Friday, September 5, 2008

Back in the saddle.

Whew. The new computer adaptor came. Yippee! I was really starting to worry about myself. Anyway, I'll try to post the greatly anticipated b'day pics tonight if I can keep the kiddos occupied for long enough.
They have scheduled Olivia's next bone marrow biopsy for Monday morning at 7:00 am. We'll go over the night before and stay at my parent's house since we have to be there at 6:00. They are planning on it going very smoothly! We have two appointments afterwards that we are planning on making it to. I think they said a total of 1 to 2 hours including recovery depending on the type of sedation they decide to use. She is having it done up in PICU as long as there is a bed available, so that right there will make her feel at home - hopefully not too much at home, though! Gotta run - school's out!

Wednesday, September 3, 2008

Ugh.

The computer is still out of commission. We should hopefully be getting the thing we need to fix it in the mail in the next few days. If not, it may not be good. I really need a computer. Soon. I may go out and get a job that requires me to work on a computer just to be close to one. Just kidding. That would be plain silly. A job. I'm retired?!?
Anyway, I didn't want anyone to be worrying about us. Everyone's doing awesome! I'm still waiting to post those b'day pictures!

Monday, September 1, 2008

The Birthday Bash!

I have a ton (thanks, nic!) of pictures to post from the big birthday party on Saturday. Thanks so much to everyone that came over - from near and far! There is really only one way to describe the entire day - it was completely overwhelming. In a good way, of course.
Olivia was overwhelmed with all the people. She didn't give a single smile until everyone was gone.
I was overwhelmed with the how much everyone loves Olivia. I don't mean in the "what a cutie she is" kind of way. Don't get me wrong, she is pretty cute and all, but I mean they truly care for and about her and our entire family.
I extended an invitation to the birthday to all of the blog readers, not knowing what/who to expect. Obviously, many of our blog stalkers are from all corners of the country. Some are right next door. Olivia received cards from people we never would have expected. She received a gift in the mail from one of her nurses in the PICU. My cousin in Florida made a trip back to Illinois to be able to come to the party. Our pastor and his family came over for the party. Zac's secretary brought her family over for the party and brought gifts to the two big kids, too. A friend of my mom's (a parent of a student she's had in the past) sent a gift for Olivia, a wonderful note, and an extremely generous gift card to Zac and I.
The most overwhelming of all, though, is that one of Olivia's nurses from PICU and her little girl came for the party. When she emailed and said she was coming, I was so excited! We got to be so close to everyone up there and it's hard not to see them everyday. So, when she came bearing gifts from the entire staff, it was incredible. As much as the gifts are appreciated, it's the card that says it all. There is literally not an inch of empty space on that card. Everyone wrote the sweetest things to Olivia. Everyone. Her PICU doctors, every nurse, her cardiologist, surgeon, respiratory therapists...everyone. I can't stop reading every word over and over. It's not even possible to put into words how you've all touched our hearts. (Literally for Dr. F. -hehe-sorry -had to throw that in there!) Needless to say, it was an amazing day for an amazing little girl, thanks to a whole lot of amazing people.
So, where are the pictures, you ask? Our computer isn't working and I'm using a loaner. I can't figure out how to get the pictures on here and I wanted to at least post that the party was a huge success. Stay tuned...