Saturday, December 27, 2008

Merry Christmas!!

Belated holiday wishes to everyone. My plan was to post so much during the holidays, and that obviously didn't happen as Christmas has come and gone! We had an absolutely unbelievable Christmas this year - one that will definitely go in the history books! There is so much to share about the events from the week, but I don't have too much time right now. The big kids went to the basketball games with Zac and Olivia is needing some attention. I left my camera at the in-laws on Christmas Eve, so pictures will come later along with the details of Christmas! Hope everyone had a blessed holiday!

Friday, December 19, 2008

What do people do?

What do people do that don't believe in electricity? We spent only 4.5 hours without power this morning and I thought I was going to lose my mind. The kids were completely squirrely. Zac was going nuts. It wasn't good. We were getting ready to head out to someplace that had electricity, when it finally came back on. Having a child on oxygen doesn't make things any easier. Luckily we had lots of portable tanks!
The trees are completely iced over and we are still losing branches here and there. It was a snow day for Jack which means everyone is officially on winter break. Except Zac. We decided he is never truly on vacation unless we are out of the state.
We are looking forward to a productive weekend. Zac goes to Iowa tomorrow with some of the kids from school. Jack and Brooklyn have practice in the morning for the church program. My mom is coming to help out with keeping Olivia in the house. I'm going to clean and get ready for our first family Christmas celebration on Sunday with the Chatterton side. The holiday season is in full swing around here!

Thursday, December 18, 2008

The newest addition...

We've added another problem to Olivia's list of medical issues. She now has allergies. Go figure. In the big scheme of things, obviously it's not a big deal. It's just annoying. I'm sure it's the Christmas tree since she's never had any issues before. It really just started over the past weekend. Her eyes have been really puffy and at her pediatrician appointment this week it was decided it must be allergies. So, two new medications - eye drops and Claritin.
We are also going to take her back to Peoria for another swallow study in January sometime. I don't think she is quite ready, but because of her rapid weight gain, it would be better to get her off her high calorie diet. She's up to a whopping 28 pounds. She's really been around 28 for a while now, but the last weight at the dr.'s office was 22 pounds in September, so it looks pretty drastic on the charts.
She might start seeing a pulmonologist, too. The pediatrician is going to look into this and get a feel about it from the cardiologist. She has had so many lung issues that she thought it would be a good idea. Her main problem is her pulmonary hypertension, but that is cardiac related, so the cardiologists deal with that. But, the fact that she is still on oxygen, has had so many respiratory illnesses, and has such scarred lungs, it's probably time to get a lung experts opinion. We'll see where that goes.
Otherwise, all is well. Brooklyn is officially on winter vacation. She's had her school program and did a wonderful job as an angel. Jack may be on vacation if this winter storm hits like they keep saying. We signed up for treats for Jack's class, which I felt like I needed to get done just in case there is school. Let's just say, if it does hit, we are going to be eating a whole lot of snowman cupcakes for Christmas! Olivia is feeling much better - just a nasty sounding cough and a little upper airway junky noise. She is only allowed to leave the house to take the kids to and from school. All other times, she is quarantined to the house!

Sunday, December 14, 2008

Another Amazing Olivia story

Now, keep in mind that one week ago today, Olivia woke up with a fever and very congested. She spent 3 nights and the majority of 3 days lying in a hospital bed. And what did I find today? Olivia on the third step heading upstairs! I went up to get dressed for the day and came out of the bedroom to find her just climbing away! What an amazing little girl. She is so strong and such a little fighter. She's going to be up and walking before we know it. I don't know if I'm quite ready for that! I'll try to get a picture, or better yet, a video, of her climbing skills next time she decides to go for a hike.

Thursday, December 11, 2008


Olivia had a really good night. I mean, her sleep schedule leaves a bit to be desired, but a good night altogether. Her numbers stayed in a reasonable range and she was much calmer with her breathing. I think it all boils down to her chronic lung disease and not having any extra reserve whatsoever. The slightest effort from her results in faster breathing, lower sats, etc... We just need to get the junk out of her lungs and then they can concentrate on breathing! Have a great day! Thanks for all the extra prayers over the last few days!

Wednesday, December 10, 2008

Home again.

Well, we got home about 1:30 - not too bad. Olivia is really excited to be home. She is still really, really junky and working pretty hard when breathing. But she is happy and playing and that is a huge indication that she is doing okay. We are praying with all our might that she is able to beat this on her own at home and we don't have to go back. Her numbers aren't great and she is requiring quite a bit more oxygen, but as of right now, these are all things we can do here at home. She just needs to continue to improve. She has very little energy and crawling across the room takes a whole lot out of her. So, for tonight, we are going to try to keep things calm and hope for the best!
It sure is good to be home. Even being gone for just 2 days, I feel like we missed so much. It was fun to hear about the last few days of school and all the things around here that the kids did with Grandma. Hopefully we continue to stay here!

It's a go!

Now we'll just have to see how long it takes us to get out of here! Next post from home...

Ornery Little Cuss!

Olivia had a great night. She took a little nap in the evening and woke up a little spitfire. She threw absolutely everything out of her crib and giggled about each and every one. Her numbers stayed really good. Her heart rate is awesome. She was pretending she was an Indian, spitting, making kissy faces, the whole nine yards! She even had her stethoscope on! I can't see any reason why we wouldn't be able to go home today, but I'll post again after I hear for sure from the doctors. The bad thing down here in PIC is that the doctors don't make rounds until 10:30-ish. Upstairs, they were always around by 8:00. Keep you posted...

Tuesday, December 9, 2008


I had to post this picture of Olivia hanging out watching TV. She's definitely feeling better!

So, last night it was getting a little confusing with Olivia's care. She was admitted to OSF under the care of doctors and residents from the Children's Hospital. I requested a consult with the PICU doctors who are under the U of I doctors and they have their own residents when you are admitted for medical as opposed to cardiac. Needless to say, there were a lot of doctors in and out of here each having their own thoughts and opinions. This morning, our PICU doctor transferred Olivia to his care to make things easier! Thank goodness...I was getting so confused!
Anyway, Olivia is doing AWESOME! I got a couple of giggles out of her earlier, she is off of high flow (in record time, for her) and on 3 liters off the wall. She can eat! She just snarfed down 6 ounces and could have gone for some more. The doctor said that if she can get down to 2 liters and hold her own, we might be able to go home tomorrow! I love the fact that she is getting so much stronger and she is able to handle these things is a much better fashion than the "old Olivia." Keep you posted...

Five minutes

Here's Olivia this morning. She's feeling a little bit better. She sat up for a whole 5 minutes and played with her bug sorter. She's just so weak. It amazes me how fast it happens. I really think the hospital itself drains her. She is no worse off right now than she has been at times at home, and she never would act like this. She's probably just hungry and figures it easier to be lethargic and sleep than to think about food. If you remember from previous stays, she can't eat while on high flow oxygen. They made a big jump on weaning it down this morning, so we don't have as far to go. Maybe, if she behaves, she can start eating later today. The docs still haven't made rounds, I'm just bored and thought I would post the picture. Have a good morning!

Tuesday morning update...

Olivia seemed to have a good night. Zac stayed here with her so I could get some sleep. I tried to get some details about her night, but he was a little crabby (rightfully so) and didn't offer much info. (Watch out MHS staff - he's a little grouchy today;-)
Anyway, we are apparently in isolation for Non-RSV Bronchilitis. This seems to always be her diagnosis when there is no solid proof of any other virus (like RSV, pneumonia, etc...) Personally, I just consider it a cold - she just handles things differently than most of us. They drew some labs this morning, so we'll see if anything comes from that. Her breathing is 90% better - almost back to her baseline. They were able to wean down her O2 a little bit last night, but she still has quite a bit to go. We'll see what the day brings. I'll update more after the doctors make their rounds.

Monday, December 8, 2008

Negative is good.

Things are going well here. Olivia pretty much hasn't woken up since about 11:00 this morning.
I'm jealous.
So far, so good on the lab tests:
RSV - negative
Influenza - negative
MRSA - negative
fever - coming down
respiratory rate - slowing down a bit.

They are going to try and wean down her O2 to see how she handles that. She's doing pretty good so far. If she gets any worse whatsoever, we are most likely heading upstairs.
Right now we are being followed by the Children's Hospital doctors and all their residents, as well as having the PICU doctors and residents keeping a close eye on her. We aren't as familiar with the faces of the Intermediate unit, and haven't always had the best experience, but things are going really great. I'm loving our nurses today and they have changed a few things that make me feel soooo much more comfortable down here. Or maybe it's just because we spent a night on a general pediatric floor in a small hospital last night? Either way, we are hanging in there and the doctor thinks it's just a viral thing that needs to run its course. Quickly.

'Tis the season

Last night at the Christmas party



Olivia's in the hospital. She woke up yesterday morning with a fever. I gave her some Tylenol and that took care of it. She seemed to be much better as the day progressed. So much better that we decided she could go to the Christmas party and Grandpa and Grandma's church. She took a turn for the worse and we took her in to the ER in Macomb about 9:00 last night
Not feeling so hot...

The actually admitted us to the hospital in Macomb. We've never done this before - always straight to Peoria. She made it there until about 4:30 this morning and they called in the doctor. She sent us to Peoria by ambulance and we were checked in here around 10:00. We are in the Intermediate unit right now and things are going well. Olivia's on high flow oxygen (7 liter at 100% for those who like to keep track). Everyone is thinking virus, but we'll see what the labs and xray show.

Today...feeling really icky.

We'll keep you posted... Thanks for any extra prayers and simple thoughts. We really appreciate them!

Thursday, December 4, 2008

St. Jude appt.

Guess who doesn't have to go back to any Peoria doctors until February? That's right! We had an appointment at St. Jude today. Her counts were great, great, great! We will go back in 3 months for a follow-up and then most likely repeat a bone marrow biopsy in September of 2009, and if all looks good (as anticipated) we will probably be discharged from St. Jude! It's so crazy to think that 7 months ago we rushed to fix her heart to prepare her for chemo treatments. Dr. Al. from St. Jude was talking today about how far she has come and how worried she had him at the beginning of this whole process. We both agreed that the right things happened at the right times and we got really, really lucky on this one. God is good!
We also see the cardiologist in February and will have an Echo done to check on the old ticker. Until then, we still have to go to Peoria for lab work every couple of weeks which kind of stinks. We have a machine at home that is supposed to calculate her Protime for us, but for some reason it doesn't work with her. It's a long, frustrating story, but if we could get that would be awesome.
Otherwise, all is well on the home front!

Wednesday, December 3, 2008

Tis the season

The holidays are in full swing here in the Chatterton house! Jack starts us off this Saturday with his concert at school and Breakfast with Santa. Then to Grandpa and Grandma C's church Christmas party on Sunday night.

Zac and Brooklyn went to get the Christmas tree last weekend. Brooklyn picked out the "perfect" tree. I would probably argue that, but I know I wouldn't win, so why bother. The rest of the house is decorated, we've had our first (and second) big snowfall, and we are in the midst of preparing our hearts and minds for Jesus' birthday!

Zac and the big kids still walked home from church (Livvy and I drove, as usual!)

Our first snow angels of the season!

Poor Livvy. On the inside looking out.

So, during this season full of joy, I thought it was necessary to share a couple of things that have brought joy (and some frustration) into my heart.
While setting up our Fisher Price Little People collection, I said we still needed the nativity set from downstairs and sent Brooklyn to get it. Here is what I received: A bus full of wise men, an angel, animals, baby Jesus, Mary, Joseph, you get the idea. But please note: the driver is the right guy! I'm not quite sure this is how the crew got to Bethlehem, but who knows?
The frustrating situation, that put a huge smile on my face, happened Monday morning. In our usual rush of getting the kids packed up in the car to take Jack to school, we couldn't find his hat and gloves anywhere. We searched and searched and finally decided they must have been left in Daddy's car. After my lecture on being more responsible and saying that I didn't know if he would be able to go out to recess, we headed out the door. Pulling out of the driveway, I look to my left and see the adorable snowman that the kids built on Sunday. The conversation that followed:

Me: Jack, who's gloves and hat are the snowman wearing?
Jack: Mine.
Me: Why?
Jack: He needed a hat and gloves.
Me: sure to tell your teacher that your snowman is wearing your hat and gloves and make sure you tell her that your mom and dad weren't aware of it.

Luckily there was no outside recess, so I didn't have to be the bad mom that sent my kid to school with no gloves. The girls and I still went to the store and got an extra set of gloves and a hat...just in case the next snowman gets cold!

A belated Thanksgiving post...

I meant to do a post dedicated to our angels and heroes at the Children's Hospital of Illinois(mainly our PICU family) on Thanksgiving, but time just got away from me. Imagine that.

We miss you guys terribly! Don't think that, for any reason, we want to be back there with Olivia as a patient, but we do think and pray for all of you on a daily basis.
I will always appreciate how each of the doctors took my "unprofessional mommy opinion" into consideration, even if it was far-fetched. I will especially remember all of the nurses and doctors reaction when we were told Olivia had Leukemia. We had to comfort you because you all love Olivia so much!

Anyway, this post is specifically dedicated to thanking each of you for everything you have done for us over that past 2 years. Without you, Olivia wouldn't be with us today...and she wouldn't be doing as AWESOME as she is! I know you will appreciate the next few pictures (be sure to show Nana Peg from respiratory - she'll love the breathing treatment picture!)

So, Olivia is crawling on all fours about 90% of the time! She is getting really fast! She plops down into her army crawl when she's in a hurry. Today during therapy, she stood up from a sitting position by just holding on with one hand! All of her therapists think she is getting so strong and can't believe the progress she has made even in just the last month! She has had two pretty nasty "colds" that had me worried that we would be up visiting in the last month, but she got over them all by herself (well, with an antibiotic, breathing treatments, and a little bump up on the O2!)
The things I thought you would get the biggest kick out of show just how much you all taught her! A few weeks ago when she was getting breathing treatments, she grabbed the treatment out of my hand so fast and took over all on her own! It was absolutely hilarious!

The other thing is her new found love for stethoscopes. She went through a phase that if she even saw one of those things, she flipped out! Now, she won't take it off. She has her play stethoscope on all the time. She naps with it on and we have to take it off before bedtime. She searches for the thing when I try to get it off of her. I see her working in the medical field in the future thanks to you guys!
Anyway, enjoy the pictures and enjoy the upcoming holidays! And please know how grateful we are for each of you! Thank you!

Saturday, November 29, 2008

My amazing family.

I have always felt like I was raised by an extremely generous family. Especially my grandma and my mom. They have always been the first to help out people in need in any way that they can, whether it be through volunteering, fundraising, donating, whatever. I've always admired this about them and pray that I can set as good of an example to my kids and if/when I have more time and resources, I can do the same.

Then I married Zac. The entire Chatterton clan goes way out of their way to bless people. I notice it especially with the Chatterton men. They never, ever judge people. They would give you the shirt off their back if you didn't have one. Very, very generous people.

Last night when we packing up and getting ready to leave Zac's parents house, Brooklyn handed me an envelope with a Christmas wish on the outside. During the hustle and bustle of packing up, I tossed it in Olivia's medicine bin and carried it on out to the car. After we were home for a while, Zac asked if I got an envelope from Brooklyn. That's right - what was that?

A Christmas card from Zac's uncle and family. This year, instead of gifts, they had all decided they wanted to help someone else. They took the money they would have spent on each other and gave it to our family. The card read "we hope this money will be as much of a blessing to you as it is to us." Precious family - you have no idea. Not even the money, but the pure act is such an unbelievable blessing to us and to our family. And the fact that we are able to tell the kids about this act of generosity, fills my heart with so much joy. You are all amazing people. Quite simply, thank you and we love you all!

Our blessed Thanksgiving weekend

We are so blessed.

Blessed to have family that is close. Blessed to have all sides of the family that get along with each other. Blessed to have so many kids running around and at ages that they all get along with each other! We've had a great Thanksgiving's a run-down of the weekend events:
The two big kids went to Grandpa and Grandma Chatterton's for Tuesday and Wednesday night so we could get the house ready for Thanksgiving. We ended up having 24 for Thanksgiving this year, wonderful food, great conversations, a even the usual friendly game of poker downstairs for some. (not me. I despise cards of any sort) The 5 big kids told what they were thankful for...everything from family, to eye doctors, to cereal, of course. Anyway, we had a great time. Such a good time, I completely forgot to take any pictures. I'll have to get some from one of the grandma's and post them later.
Then off to Dunlap. The kids and I always head on over to Dunlap on Thanksgiving night to stay at my parent's house. I get up early, early and hit the Black Friday sales. Zac stays back and cleans up the house - sounds like a pretty good deal for me. The big kids went to the Santa Claus parade while Olivia and I napped.
Friday night - to Zac's parents to meet up with family for dinner. Zac's cousin Ryan and family made their annual trip from Pennsylvania. This is the one time a year we get to spend time with them and we look forward to it every year. Olivia had a great time playing with McKenna - it was so cute to watch them together.

The kids all had a great time playing. I came up with the wonderful idea of getting a picture of the 6 cousins together which I know everyone appreciated. I thought of this right as everyone was getting ready to leave - the perfect time. Here are a few of the great pictures!

So today - Zac went back to Peoria to run a race. Jack insisted on going, so he'll cheer them on from the sidelines with Great Grandma. The girls and I are planning on getting some Christmas decorations out and maybe head to Uncle Bob's for a pony ride with the cousins.
We are so unbelievably thankful for all the family and wonderful people in our lives and are treasuring every moment of the beginning of this great holiday season.

Thursday, November 20, 2008


Olivia has had an extremely productive couple of weeks. It's so amazing to see how quickly she can do things if she actually puts her mind to it... Gee, that sounds like any other kid!

Here's what she has accomplished. All of a sudden she has decided to pull up to her knees on absolutely everything. She has decided to start crawling - real crawling on all fours, instead of the army crawl. She has started making "kissy faces" and smacking her lips together. I've heard a few "b" and "f" sounds (of course, no "m" sounds, though).
Anyway, she has just been on a roll lately. She's working really hard on learning to pull herself up into a standing position from sitting, but she has a long way to go. We need to strengthen the muscles in her honey buns before she's going to get that one down!
We start her RSV shots tomorrow, had a pneumonia shot, and the flu shot - covering all our bases to have a holiday season at home this year!
We saw the pediatric dietitian yesterday to discuss hydration. With all of her feeds being so thick, hydration is/was a concern. She seems to be doing great - no signs of dehydration, so we are going to keep an eye on things for now. The dietitian did mention a G-tube to guarantee fluid intake, but in this particular case, I'd rather be reactive instead of proactive. She just needs a chance to show she can be okay all on her own! If she can't, we'll cross that bridge when we come to it.
So, all is well on the home front - just preparing for the Thanksgiving holiday (our favorite holiday!!!) Brooklyn keeps talking about the huge feast we are going to have and Jack keeps talking about all the turkeys we are going to make! We love to talk about all the things we are thankful for and it's so fun to hear what the kids have to say...I'll save those for next week!

Saturday, November 15, 2008

Beauty Parlor

Just a little Saturday night fun...

Tuesday, November 11, 2008

So true...

I got this in an email from Zac's cousin today. It put a smile on my face.

You know you have a child with special needs when...

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, ADS, BSD, IFSP, etc.
You keep your appointment with the specialist even though a tropical storm is raging because you just want to get this one over waited 8 months to get it.....and besides, no one else will be there!
Fighting and wrestling with siblings is considered 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 than 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/Her medical file is several inches thick and growing.
You have a new belief...... that angels live with us on earth.
I can so relate to some of these. I could probably even come up with a list of my own, but I'll save that for another post. Love you, Olivia!

Run, Livvy, Run! (Updated)

Check out Olivia's new kicks...

Aren't they cute? She was fitted for some ankle braces to give her some more ankle support (she rolls her ankles). We are hoping this will get her in the mood to start standing!

Anyway, the braces are meant to be worn with shoes and we only have one pair that barely fit over them, so it looks like we'll be going shoe shopping soon! It will be fun to see if these make a difference with her PT session tomorrow!


Check out what the new duds help her do!

She was sitting on my knees, and with just a little bit of assistance, she was able to stand up without anyone holding on to her! She actually stood there for about 5 minutes and then sat right back down! Go Olivia!

Sunday, November 9, 2008

Being a sports mom...

I can already tell that if our kids decide to participate in sports, I'm going to be a horrible "sports mom." Jack is playing Biddy Basketball at the high school for the 3rd year. I've made very few of the games since it's in colder weather and Olivia keeps me in the house, but I went today for the first game of the season. It consists of 4 or 5 games on Sunday afternoons for a half an hour. It is absolutely hilarious to watch. Jack's age group consists of kids from age 3-7. Obviously with Jack being 7, it puts him as one of the bigger kids on the team. The problem? There was a guy there that kept saying things. Now, in his defense, he wasn't obnoxious about it or anything. He just happened to be two people away from me so I could hear everything he was angry about. He was accusing some of the kids of fouling the other team (on which his granddaughter was playing) and saying that Jack and another teammate should let someone else shoot the ball. I do agree that we should encourage teamwork. We even talked to Jack about this after the game. The point is the kids are anywhere from 3 to 7. It's not important who shoots, scores, wins, etc... It's only a game. Can't it just be for fun? So, now that I'm done with my little rampage, I fully admit that this doesn't bode well for my future. I'm going to make a horrible "sports mom."

Thursday, November 6, 2008

The past two weeks..

In photographs...Zac and the kids did a great job carving the pumpkin. Jack though it was awesome that he actually helped with the knife. I wasn't so thrilled, but it turned out okay in the end.Brooklyn was excited, too. Only problem? Mommy didn't get a picture of the end result! Maybe next year?

Mr. Albert Pujols... Pocahontas...And Miss Brooklyn was a beautiful hot pink witch. However, slacker mommy didn't get a picture. At her Halloween party, I was holding a sleeping Olivia the entire time and couldn't get a picture. Lucky for me, another mom sent a picture of all the girls from her class. (She's the third one over)
With all the excitement of Halloween, Brooklyn has been all about dressing up lately. This is the ensemble from yesterday. Then she calls me downstairs to check out Princess Olivia. Apparently she needed to dress up too...

Speaking of Olivia...

She's feeling 85% better. She's been extremely ornery lately. These are just a couple of the places I have found her lately...

In the clothes hamper....

Trying to enjoy the weather outside....

And my personal favorite...

cleaning out my purse!

Have a great weekend!

Monday, November 3, 2008

What a slacker.

I feel like such a slacker. No posts for a full week. What's wrong with me.
Here's a quick run down until I have a chance to post pictures and more info...
Wednesday - Halloween parties for Jack and Brooklyn - freezing weather.
Thursday - no school, Trick or Treating in Macomb.
Friday - no school, Happy Halloween, kids to Grandpa and Grandma's for the weekend. Zac and I to the Quad Cities.
Saturday - Zac and I to Galena.
Sunday - Zac and I to New Glarus, WI and then home
Monday - Olivia's sick, but toughing it out. Labs, chest x-ray - all good.
Yes, you did read that right. Zac and I actually went away for the weekend. Our punishment...coming home to a sick little girl.
More to come...

Monday, October 27, 2008

Marathon day

Another marathon day of doctor's appointments. Here's a quick run down:

St. Jude - blood counts are great. Hemoglobin 12.7, Platelets 154,000, and I don't remember her Hematocrit count...all I know is there was a "H" by it for High. We'll take that! All is well there except that her doctor went to Syria with his wife and two children last month and Homeland Security won't let him back in the U.S. So, a different doctor for awhile. Do they not realize this man is saving lives? Anyway, good report - I don't know when we have to return for a follow-up.

Dr. S (Cardiology) - wonderful report. She sounds great, looks great, and has gained a whoppin' 5 pounds since he saw her in August! We go back in 4 months for an Echo with hopes of being able to wean down some meds (and possibly her oxygen?!?)

Dr. F (Cardiac Surgeon) - good report. Possible hernia at one of her chest tube sites, but just something we'll keep an eye on. Labs next Monday and a quick stop by the office for a blood pressure and heart rate check! Otherwise, we'll keep contact via phone to reduce trips back and forth! Yippee!

On a side note...Olivia has mastered a couple of two-word phrases. She now can sign "more" and "all done," and has possibly been spotted signing "more please" along with patting her food and then signing "more." She's so polite. Just a little tidbit of information to brighten your evening.

Friday, October 24, 2008

For your listening pleasure...

So, I've decided to add music to the blog. I used to not enjoy it. I would go to a blog and all of a sudden it would start blaring at me. Lately, I've really liked it. Therefore, I thought I'd give it a go. I've had all these songs on a CD that I listen to whenever we are in the car and the kids are sleeping. I also listen to these on the morning and evening drives when Olivia is in the hospital. It's music that gets me through each day, especially the days that God decides to test me! And some random songs that I just happen to like. Enjoy!

Tuesday, October 21, 2008

The weekend in review...

We actually had a really fun, family-filled weekend. These seem to be few and far between for us lately, so it was a nice surprise!
We are in the process of getting a new vehicle. Zac has cut me off from the Mini. I distinctly remember our family Christmas letter from back in 2005. It read something like this: "I finally feel complete in my role as a mom. We purchased a minivan this year and I love it!"

The Mini is gone. You served us well and will be greatly missed, however, the new ride does have a DVD player and this is going to save my sanity on all of our trips to Peoria!!!
Oh, sorry. I do have a point to this story. The vehicle is located in Springfield, so we went down there to sign some papers. Then a stop at the Lincoln Library and Museum. We had never been before.

Zac and the kids with Lincoln and his fam (pretty life-like, huh?)

Jack - aka Honest Abe

Mary Todd Lincoln - couldn't you tell?

The kids loved it! I felt like such a great parent, giving the kids a great history lesson. Jack has always been fascinated with Abe and George Washington, so this was great for him. Olivia - not so much. She and Daddy spent a lot of time together wandering the exhibits. Still definitely worth the trip.

Then to cousin Emmy's 6th birthday party.

Pumpkin themed. Very festive with a menu of pumpkin soup, pumpkin chocolate chip muffins, pumpkin seeds, pumpkin pie, and a pumpkin shaped cake! The kids had a blast playing with their cousins and Awesome Uncle Bri!

Finally, home by 10:00 - all kids stayed asleep. Definite bonus.

Sunday - to church, yard work, cleaning of the house, boys to Frisbee Golf...fairly relaxing day.

Now, it seems like the rest of October is crazy busy. We wouldn't have it any other way!

Thursday, October 16, 2008


***Warning*** If you are really into politics, you may want to skip this post, although it is kinda cute!

We were picking up Jack from school yesterday and started discussing what we would do when we got home. Jack pipes up from the back - let's take a vote just like we will be doing soon for a new president. I was impressed. I barely knew there was an election going on (see, I told you it might not be good to read this). Anyway, I thought I would continue on with the topic at hand...what else does he know about all this?

So, I ask the kids if they know who they would vote for.

Jack: I know. I know. But, I can't remember his name.
Mommy: Barack Obama or John McCain.
Jack: Barack Obama
Brooklyn: "Jim" McCain (apparently they are pretty tight - she has a nickname for him and everything)
Mommy: Do you know why you would vote for them to be our new president.
Jack: I would vote for Barack Obama because his first name starts with a "B" like Brooklyn and his other name starts with an "O" like Olivia.
Mommy: Well, that makes sense.
Brooklyn: I would vote for that other guy because I like candy.
Mommy: ???
Brooklyn: Those things at Christmas that are twisty are kinda like candy and I like candy.
Mommy: ???

After a few moments of silence, I finally get it. A candy "cane" - John Mc"Cain".

Mommy: That sounds like a good reason too, pumpkin.

How will I ever decide who to vote for? Hopefully this little debate helps if you were wavering between the two...

I've been thinking...

I know. That alone is a scary thought.

But, seriously. I've been thinking a lot lately. I've been in quite a funk the last few weeks. I've been trying to figure out what the problem is. Why can't I seem to keep things under control like "normal" people? Then, all of a sudden, it hit me. Our life is so unbelievably far from "normal." Way back when, right after Olivia was born, I distinctly remember our pastor coming over to talk to us about Olivia's baptism. One of his final questions to us was, "How is it going being the parents of a special needs child?" Our response at the time - What do you mean? She doesn't really have any "special" needs. She's just like the other kids. Just a typical old run of the mill baby.
Oh, how times have changed.
I've always liked the analogy of Emily Perl Kingsley's description of being the parent of a special needs child in "Welcome to Holland."

byEmily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
I, personally, can't relate to the part about always longing for Italy and the pain never going away. Quite frankly, I could really care less if all of our vacations were to Holland. Maybe that's partially because we'd already been to Italy twice. We've gained so much by getting to go to Holland. We haven't lost a thing by missing out on Italy. Regardless, those of you who have only been to Italy have no idea what your missing over here in Holland.
It's wonderful. Busy, but wonderful. And we wouldn't have wanted to go anywhere else.
I think the last few weeks have just been too crazy. Pneumonia. Aspiration. Leaky mediport. Completely severed mediport. Then, on Monday, the doctor calls and says the hospital here is not able to draw her weekly labs in the correct manner, so we have to have them drawn in Peoria. Medicine at 6, 9, 12, 3, 6, 9, 12. Is this milk thick enough? Is she still aspirating? Why did she just cough? Why does she still sound "wet" sometimes after she eats? Olivia's therapists call to set up appointments and they have to remind me that Brooklyn has preschool, so that time won't work out. Geez. I can't even remember that Brooklyn has school!
I needed to take a step back an put my focus back where it belongs. Then, last Sunday at church, Pastor referred to a familiar verse from the Bible. I grabbed my checkbook (first thing I found to write on) and wrote it down on the back.
"I can do everything through Him who gives me strength." Philippians 4:13
Brooklyn asked what I was doing. I said I just needed to write this verse down, because sometimes Mommy forgets. So, I'm back on track. We just happen to be going through a season of life where Olivia's special needs are fairly significant. So, yes, people. I don't always have things under control. I do lose it every once in a while. This time it's just been for an extended period of time without much of a break.
I love you loads punkin'...but could you just slow things down a bit?!?

Sunday, October 12, 2008

CHOI plug

So we had the big calendar unveiling on Friday night. It was really, really nice. They started out with one of the pediatric surgeons speaking, a nice prayer from one of the chaplains (one who happens to be very fond of Olivia). He has been with us through at least two of her heart surgeries and he was our "go to" guy for Monday's surgery as well.
All the families were there and they showed each of the kids pictures up on the big screen. Each child was introduced and was able to go up and get a complimentary wall and pocket calendar! A very special "thanks" to Dr. T. and Tara! It meant tons to all of us that you were able to pop up!It's always great to see you outside of the 4th floor. All of the pictures are absolutely amazing. Anyway, here is a sneak peek of Olivia's cover shot. She is also on the inside cover and next page. If anyone would like a calendar, I'll post the contact information below. I don't know that they'll ship them, so if you would like, I can pick them up. I hear they are hard to come by, so if you do want me to order you one, why don't you post a comment or send me an email by Wednesday or so and I'll call over and see if I can get some more.

To order a calendar:

call 309-655-5753

Wall calendars are $15

Pocket calendars are $5

Saturday, October 11, 2008

Happy 7th Birthday, Jack!

Wow, I can't believe we have a 7 year old. Jack had a great birthday today. He had some friends from school over for a baseball themed party and then the family came over and we celebrated with them. It was a huge day, but everyone seemed to have a great time! He got tons of Legos which are one of my favorite things to do with him. As Jack said..."Mom, we are going to have some fun tonight." We only got one thing put together, which leaves a lot more fun for later!
Happy Birthday, Buddy! We love you!

Friday, October 10, 2008

We're home...

Well, we're at Grandpa and Grandma's house.
Olivia's doing great. Recovery went well. She's happy to be eating again and is back to her smiley self! She'll probably be pretty sleepy for the next 24 hours while the anesthesia wears off. Thanks for thinking of us and saying those extra little prayers today!
She was quite popular down in surgery. The Child Life Specialist that organizes the CHOI calendar also works in ambulatory surgery. She had told everyone that Olivia was the cover girl and had to be looking her best for her performance this evening. Everyone was excited to have a celebrity in their presence! So, we plan on relaxing this afternoon and getting ready for the big night! Stay tuned...

Oh, the suspense...

It's out. Woohoo!! The doctor took his little catheter machine thing and threaded it through her vein right on up to grab the line out. We'll just hope she never needs another one of those. It seemed to be back luck for us. The anesthesiologist is now going to extubate (get her off the ventilator) and let her wake up a bit. None of this should interfere with us going home today. She may be in a bit more pain than she would have, so we have a prescription for a pain med just in case we need it. She always has to add some sort of excitement to everything, doesn't she?

"Can anything just be easy"

A direct quote from Dr. F. - the surgeon. No problems getting her on the ventilator. He was able to get in and went to remove the mediport only to realize that the tubing had severed from the actual mediport.
Okay. No problem. We'll just reach in and get it.
Too far down.
He called the people from Angio/Radiology and had their team come down and take a look. All the veins look open enough, so they are going in through her groin and trying to get it out that way. It could be 15 minutes. It could be 2 hours. He is very confident this will work and we can still be on our way later this afternoon.
Worse case scenario...doing an open procedure to remove it.
We'll keep you posted....:)

Surgery is underway!

She went in a little after 8:00. She was smiling and ready to go in with the nurse. They do have to intubate (put a breathing tube in) since they are working so close to her face. They would hate to suffocate her while they were working! I agreed. She did great coming off the ventilator when they put the mediport in, so we don't anticipate any problems. Should be a quick in and out deal. Then one of us gets to go into "Phase One" recovery with her (for about 45 minutes). Who do you think that will be! Once we get to "Phase Two," (for about 1 hour) we both get to be there and she can finally eat. She was starting to get a little cranky every time she saw her hospital bag - knowing that's where the goods are!

Once we are in recovery - "Phase Two" I'll let everyone know. I'd have Zac update during "Phase One," but he would have no clue where to even begin. Then we should be out the door!