America's Next Top Model?

Brooklyn or Olivia. Who will it be?

First, we'll talk about Brooklyn. Do you know how embarrassing it is as a parent to have your child ask someone to go find a camera to take pictures of them. Better yet, she tells them to come in the living room, she wants her pictures taken on the couch. Last weekend we were at some friends' house for a Fantasy Football draft. The moms/wives were watching all the kids while the dads/husbands/guys did their beloved draft. Brooklyn goes up to Sandy and asks her if she would find a camera to take some pictures of her. Seriously? Where does she get that? She proceeded to pose for a series of photos. It was...something. I'm just thankful she left her clothes on!

As for Olivia, we got a call on Tuesday asking if Olivia would be interested in being in the Children's Hospital of Illinois calendar. Of course she would be interested! We travelled to East Peoria today for a little photo shoot and she'll be featured on the cover of the 2009 calendar! The gal that took the pictures did an awesome job. They will be having an "unveiling" in October so we'll get to see the finished product.

Regardless, I think they are both pretty cute. I do think, however, it's probably better to have someone come to you to request photographs than to go around requesting others to take your picture?!?

Birthday update

Olivia has had an awesome day. She's got some presents in the mail and some cards from some really special people. So far, she's loving everything - except for this doll Brooklyn got her. It crawls and then falls down and screams in the most obnoxious voice you've ever heard. We've already put her away in a very safe place until it doesn't petrify her (or me) anymore.

Anyway, thought I would share some pictures from her little family party with the five of us! I suppose it would have been nice for me to clean her up for her birthday pictures, but I didn't so you'll have to excuse the green beans on her face, shirt, arms, legs, etc... That was her special birthday dinner - how pathetic!

Brooklyn and I made her a "poke cake" for her dessert tonight.

She really liked Daddy's singing?

Not too impressed with the cake. She threw most of it on the floor!

We got her a swingset in her size. She wasn't too fond of the slide. She screamed at the bottom.

She had her own swing, but her oxygen tubing didn't stretch far enough, so you could never use it! This is much better. And she loves it!
A few new books for the little bookworm.
Last but not least, her very own zoo train. She's loving the little animals! Brooklyn is loving Olivia's new presents, too. Good thing Olivia doesn't mind sharing. Jack could care less. He's such a boy. Ugh.

Happy 2nd Birthday, Olivia!

Happy Birthday, sweet girl!
You've had another big year. You started your second year off well, enjoying all the beautiful colors of fall. Once winter hit, you just didn't feel so well. Since then, you have spent many, many, many days in your home away from home - the PICU at St. Francis. Now that you have your heart fixed, you are doing amazingly well! In just the last few weeks you have started babbling so much more, trying to blow kisses, doing the "Itsy, Bitsy Spider" with your precious little fingers, and giggling out loud. This morning when Brooklyn was tickling you; I'd never heard you laugh so loud!
You are spending most of your days playing with your toys and eating. You also enjoy playing with all your therapists, who love you and are helping you so much. You love doing puzzles (thanks, Cheryl!) and stacking your cups and blocks. You are trying really hard to get used to the outside, but you are still a little unsure about that pokey green grass! Your mannerisms are definitely showing off the fact that you are now 2! You even sit in a way that makes you look so big.
Of course, your all-time favorite thing is still watching your brother and sister. They can always make you smile! They love you so much. Jack prays every night a prayer of thanksgiving that you are home from the hospital. Brooklyn prays that "your cold goes away" (even though you don't have a cold?!?) and that she loves you and is glad you are out of the hospital, too. You've touched many hearts in your short, yet amazing life.
We are praying for a strong, healthy, and happy year! Happy Birthday, Livvy! We love you!
Love,
Mommy

She's done it again!

Olivia had yet another awesome report from the doctors yesterday! We went to see Dr. Shah (cardiologist) for our post-hospitalization follow-up. He was soooooo pleased with how well she is doing. She had an echo done and it looked awesome. Her heart function is awesome and her pulmonary pressures are starting to come down. Her liver has shrunk considerably (a good thing) and we will go back at the end of October for another office visit!
We are still trying to get her blood thinner numbers in order, but she hasn't had to have any more Lovenox shots since Friday. Woohoo!
She is still deciding not to sleep. I don't know what the deal is. I don't think she has her days and nights mixed up, because she is up most of the day. Hopefully she gets thing straightened out soon.
Tomorrow is the big day - Olivia turns two! She's so excited for her party on Saturday. Don't forget - you're all invited! Drop me an email if you'd like to stop by!

Dear Olivia,

Please forgive me. I am so sorry that I am intentionally sticking needles into your sweet little belly. Please know that it is not because I want to. It's only going to make you better. It's really Dr. F.'s fault. I appreciate that you only cry for an instant. That's much better than what I do. You are so tough! I love you!
Love,
Mommy.
P.S. - It's way past our bedtime. As much as I love spending this quiet time with you and watching you destroy the living room, would you please go to sleep already?!?

Controlled Chaos!?!

Life as we know it....has just become crazy busy. Doctors appts., home health visits, occupational therapists, physical therapists, developmental therapists, speech therapists, pharmacies, teachers, schools, the list goes on.

Jack started school today. It was so time for him to go. He and Brooklyn have been beating each other all week. His attitude - bad, bad, bad. When I bring up school and how he can't act that way, his comment: "I would never act that way at school. Only at home." Gee, aren't we the lucky ones? Anyway, he got the teacher he wanted this year and has about 5 or 6 kids he already knows in his class. They get to sit at desks this year instead of tables, so he's excited about that.

Brooklyn doesn't go back to school until after Labor Day. She's going to be testing out the afternoon class this year. I think it will work well with our schedule and she knows a couple of the kids in that class, as well. (Sorry, no back to school picture for her, yet)

Olivia is doing awesome. We are starting all of her therapies back up beginning today. She will have physical, occupational, and speech once a week. We are pushing her motor skills really hard to try and get this girl moving more effectively! She had a visit to the eye doctor on Monday. All is well there - weak, but that's due to lying on her back for 12 weeks. We'll go back in 6 months.

Her St. Jude appt. - awesome. All of her numbers are still great. The results from the labs drawn last week were all within normal ranges, so they said we have to assume that her red blood cell problem from back in February, March, etc... was due to her heart. The mitral regurgitation was just blasting her blood through and it was breaking down the red blood cells. This is great news. It may continue, but because her heart is functioning so much better, it shouldn't cause as many issues. We will repeat all of those labs in a couple of months, since this was only 4 weeks since having a transfusion. We are going to repeat the bone marrow biopsy sometime between Sept. 8 and Sept. 18. (we don't return to St. Jude until Sept. 8 and Dr. Al is going on vacation Sept. 18, so he wants to do it sometime between the two). I think it's supposed to be outpatient, but it is Olivia, so we'll see what she decided to do. The plan is to do it in an PICU bed with the PICU docs doing the sedation (this makes me feel soooo much better!) So, we'll get to see all our friends for a little visit!

Here's where we are at regarding the leukemia:

1. If her numbers are worse, he will make plans to start chemo.

2. If her numbers are the same or better, we will repeat the biopsy in about 6 months.

She is still having trouble keeping numbers stable regarding her blood thinning medication, so she is on a course of Lovonox. She has to get 3 shots of it in her tummy - ouch! (she's got 2 down, just one more to go tonight) Hopefully, this will help figure out the problem and get her where she needs to be.

The biggest news of it all: My baby turns 2 next Wednesday. I'm getting pretty emotional about the whole thing. She's had a huge couple of years. It's amazing to look back and see how far she has come. Okay, enough of that. I was going to put an open invitation to the b'day party on the blog, but I didn't want people to feel obligated. We wanted it to be a huge celebration, so if anyone wants to come and have a cupcake with us, drop me an email! (chatt527@yahoo.com)

You're all more than welcome! After all, it's your prayers and kind thoughts (and the handiwork of the docs and nurses, of course) that have gotten Olivia where she is today!

Attitude

My mom sent this to me the other day. In our house we obviously have to always try to have a positive attitude about the daily events in our lives. Olivia has definitely taught us that! I just loved this - it's a great way to think of things - so I thought it was worth sharing.

Joy for the Journey

There once was a woman who woke up one morning, looked in the mirror, and noticed she had only three hairs on her head."Well," she said, "I think I'll braid my hair today." So she did and she had a wonderful day.

The next day, she woke up, looked in the mirror and saw that she had only two hairs on her head."H-M-M, " she said, "I think I'll part my hair down the middle today." So she did and she had a grand day.

The next day, she woke up, looked in the mirror and noticed that she had only one hair on her head."Well," she said, "Today I'm going to wear my hair in a pony tail." So she did and she had a fun day.

The next day she woke up, looked in the mirror and noticed that there wasn't a single hair on her head. "YEAH!" she exclaimed, "I don't have to fix my hair today!"

Attitude is everything.

Have a great day!

Record breaker

Olivia had her St. Jude appointment today. They were able to draw from her mediport and replace it with a new needle. The doctor decided to go ahead and try to get some labs that may indicate a little more about what had been going on with her. They take a little longer, so we won't know the results for a week or so.

But...we did get the results of the standard tests and (drum roll, please)...

Hemoglobin - 12.4

White count - 5.7

Platelets - 190,000

These are lifetime records for Olivia (without the help of blood products from someone else) She did this all on her own!! Awesome! It was a great visit and we will go back next Monday. If she stays consistent with her counts, they will hold off a few more weeks to do the bone marrow biopsy. Right now it's tentatively scheduled for the 25th, but if she continues like she has it will get pushed on back! I tried to get a cute picture of her for this post, but this is the look I got.

Better luck next time, huh?

Normalcy

I think we have finally gotten through the adjustment period of being home again. It's only taken 10 days, but who's counting. The first few days, Jack and Brooklyn were getting along so well. Playing with all of their toys - together and quietly. They are back to their old selves - fighting all day over everything and constantly wanting something...anything - at the most inopportune times, of course.

Olivia is sleeping really well (knock on wood). She's also eating much better. I can tell a huge difference in her mobility and strength. She has been venturing outside of the living room if Jack and Brooklyn are doing something she wants to see. She's also been interacting a lot more with all of her toys. It's definitely fun to see.

Anyway, it's nice to have a little bit of normalcy back into our lives (whatever "normal" is). I'll even take the fighting - as long as we are all together!

Long day...

We started out at 9:30 this morning and didn't get back to Macomb until 6:30. Ugh. But...It was all worthwhile. Olivia started out her day visiting Dr. Al at St. Jude. The nurses there remembered her so well, which suprised me since we had only been there 2 or 3 times and that was a long time ago. They were all so happy to see that she was out of the hospital. They were able to access her mediport and get blood return. We are going to try really hard not to lose it before our next visit there. Anyway, her blood counts were outstanding! Hemoglobin 11.2 - awesome. White count 6.2 - awesome. Platelets 174,000 - totally awesome (maybe even a record for Olivia!) We go back next Monday for labs and another check-up.
Then to radiology for a chest x-ray. Next, to see Dr. Fortuna (cardiac surgeon). He thinks Olivia is doing great! We made a few medication changes and will just keep contact via phone until next month! No daily lab draws until Friday. Yippee!
We made a brief stop up to PICU to snag a cup of hot water to warm a bottle and say hi to the nurses. We miss you guys!
All in all - a day full of great reports! Keep up the great work, Olivia!

Giving thanks.

Zac and Amy (Zac's sister) left yesterday at 4:00 in the morning to do the St. Jude Macomb to Peoria run. The Macomb group had 80 runners, 25 or so being first timers! The group was able to raise $110,000 to go directly to the kids of St. Jude! Way to go Macomb! Zac said it was a really good time and he was able to get in about 23 miles - what an experience. It was so awesome seeing all the runners come in from all the different cities. We all went to welcome them in. This was Olivia's first big outing since coming home from the hospital. She was a little overwhelmed by the end of the day, but still doing great.
We were able to get up this morning and make it to church - all 5 of us. It had been over 3 months since we had all been to church as a family. It was amazing. The service ended with the hymn "Give Thanks." What a way to wrap up the week that we have had!
Everyone is very impressed with how "healthy" Olivia looks. It seems really hard to believe that she is actually only about 8 or 9 pounds less than Brooklyn?!? She's back to eating great, but we still need to work on the sleeping thing. We'll head over to St. Jude for clinic tomorrow and see the cardiac surgeon, as well. I'm hoping they are able to access her mediport and get that all taken care of. Otherwise, we don't anticipate anything major coming from the appointments.
So, to finish off this great weekend, we are just hanging out doing family things all day. All 5 of us!

Friday already???

I can't believe it's already Friday. The week has gone by so fast. Olivia is doing awesome and is loving being home! Everyday you can tell she is getting just a little bit more accostomed to the chaos in the Chatterton house!

Medically, she is doing really well. I did go up just a titch on her O2 level. She was working just a bit hard the other night, and that took care of it all. And, gee, I'm sure glad they put that mediport it (notice the sarcasm in my voice). The darn thing doesn't seem to work. They tried to access it on Tuesday morning with no blood return. No blood return Wednesday. And, guess what? No blood return Thursday. So, I had to trek over to the hospital and she had to get stuck again! I finally asked them to just leave the needle out until Monday and have the docs at St. Francis fix it. One bonus is that she doesn't have to have labs drawn tomorrow or Sunday, so she's on a little lab vacation! I wish she could understand that. She would be so excited!


She did visit the pediatrician today and she was so suprised with her growth. She's up to 26.35 pounds! Her little growth chart made quite a jump!


The kids are still so excited that she is home, too. Jack is always wanting to hold her and loves playing ball with her.

Brooklyn keeps informing me that Olivia is her baby. "Did you hear that, mama? My baby."

I thought it would be kind of fun to see what she thought of a sippy cup the other day. She thought she was about the coolest little thing you've ever seen. It took her a good half an hour to get about an ounce down, but she sure thought it was fun! Couldn't keep her eyes off it!

You don't think her eyes will stay like that, do you?

Tomorrow morning, Zac and his sister, Amy, are taking off with the Macomb St. Jude runners to Peoria. They leave at 4:00 am and arrive in Peoria around 5:30 pm. Be sure to say an extra prayer for all the runners to stay safe and stay cool!