Afternoon reading...

Okay. So here's a pretty good story from last week.

On Friday, when the doctors started talking about sending Olivia home on Monday, the wheels started turning. The discharge nurse began diligently working on all the little things to get us out of there. We are still "between insurance companies," so a major concern was, who do you bill when we get prescriptions, oxygen, supplies, etc... In order to start Olivia on the All Kids program, she has to meet a "spend down." However, the hospital refuses to bill for a patient until after discharge. So, how do we meet our spend down when we have no medical bills until she's discharged? And she can't get discharged until she has her medical card to be able to buy the necessities for home. To make a really long story a little bit shorter, the discharge nurse explained the situation and said that the hospital had to fax at least a partial bill to Olivia's case worker or she will be in the hospital for eternity. Her response: "I can't fax the bill. It's 445 pages long!"

Here it is. The partial bill. It is important to note that this does not include surgery, anesthesia, anything done by St. Jude, radiology fees, lab fees, physician fees, etc... I went to pick it up from the billing office and it was located in a box on the receptionist's desk. A box! Oh, the memories this girl is making!

Keepin' the faith...

Wouldn't you know the day we get home from the hospital, our internet would be down! Oh well, it was probably a good thing, as it was a crazy night. I have so many stories from the past week or so I don't even know where to begin. Anyway, Olivia and I got home around 5:00 in the evening and got settled (at least a little settled). Zac and the kids rolled in around 6:30. The kids were really excited to see her, but quite frankly, more excited to see their long lost toys. I then went to reconnect with WalMart and picked up a few necessities, returning home to find Olivia's mediport bleeding. A lot. Ringgggggg....I call PICU, then Home Health. They came over to re-dress the area only to find out that the needle was completely out, poking Olivia and causing the bleeding. All this before 10:00 pm, but now all is quiet and calm - our first night home. Then, all of the sudden, Jack starts screaming. Can't sleep. His ear hurts. He's beside himself in pain. Maybe he should just try sleeping downstairs in the chair to keep his head up. Whatever. It's 11:30 - sleep wherever it doesn't hurt your ear. Then, I proceed to get up with Olivia for her meds at 12:30 and 3:30, only to have her get up at 4:30 to play. Ugh. Luckily, Zac gets up at 5:00, so I could sleep for another 1 1/2. So that's how are first night home went. Mind you, this is not all of Olivia's medications. There are still a few I haven't picked up from the pharmacy.

Just an idea as to how many supplies they sent home with us. Hey, at least I'm trying to be organized. They didn't send one of those handy supply carts with me. Next time, I'll be sure to request that.
Our first full day home, you ask? Home Health comes to put a new needle in the mediport, but it won't draw back blood. We absolutely have to have this lab drawn, so to the hospital we go for labs. Get home in time for lunch. Zac comes to watch the girls while Jack goes to the doctor for an ear infection. More medication. Our house seriously looks like a medical supply store, but you know what...I couldn't be happier!
I did take pictures of the kids, but I had the camera on a funny setting and they won't download. I'll have to work on that later.

Livvy is HOME!!

Julie and the kids are home and all is great. Well, except they do not have internet service. So, Aunt Nicole gets another chance to update. Julie will try to post soon. Thank you for all of your prayers....GOD IS GOOD!

Still a go!

Sounds like things are still a go for tomorrow. Olivia has had an awesome weekend. She seems to be eating and sleeping so well. We had a busy weekend. Zac was in a friend's wedding this weekend in Galesburg, so we did the rehearsal on Friday night, Zac ran the Bix on Saturday, I got the kids to Galesburg, attended the wedding, spent the night at the hotel, and now we are back in Dunlap/Peoria preparing for the homecoming of Olivia! Zac is taking an enormous load of stuff back to Macomb tonight (mostly toys). Jack wondered what we were going to do if Olivia didn't come home tomorrow. Just unpack it all again, I guess! Anyway, I skipped the trip back to Macomb to clean the house. I'm "in training" at the hospital to learn how to draw from Olivia's mediport, so I need to be around to practice. I'm going to make a huge trip to the store to get the necessities for the trip home. It's like bringing home a newborn! Hopefully the next post will be from Macomb! Until then....

Word on the street...

So I heard rumors today that Olivia might actually get out of the hospital on Monday. Now we know that this means absolutely nothing until we sign on the dotted line on those discharge papers, but it is an entertaining thought!
She is eating an acceptable amount for her age (more than she ever did at home, actually) and having absolutely no difficulties with that at all. All of her medications are oral. The line in her mediport is capped off (just there in case they want to draw any labs). Her oxygen is at 1 liter which is less than what we were admitted on. So, what are we still doing there? You got me on that one. The lucky thing is, I have awesome patience and big plans for the weekend, so we really aren't quite ready for her yet. This has come up on us rather quickly. Zac's in a wedding this weekend and then I'm hoping to head to Macomb and get the house in order for our big return. I need to disinfect the entire house and make it feel like home again. I need to find Olivia's crib, too. Last I checked, it looked like someone was using it as a closet. Zac hasn't had the air on yet this summer, so it might be a good idea to make sure that's going to work, as well.
Olivia, I know I said we're ready when you are, and we are. We'll make it work, but if you do have to wait until Monday...at least you can come home to a clean house!

This girl is crazy!!!

Sorry about the lack of posting today. It's been a big one.

This little girl is so unbelievably strong. Our nurse the other day posted this sign because Olivia was considering trying to pull herself up. She almost made it up to her knees today! She didn't even think about doing that at home. She had no clue those legs were good for anything!

So, Olivia had her swallow study today. They wheeled her crib down the hall and she sat up as big as you please just checking out the scenery. She did great with the study - did fine with milk at honey consistency (which we were on at home) and aspirated with the milk at nectar consistency (guess we won't try that for a while!). What does all that mean? She gets to eat now!!! And we'll just stick to her "regular" diet when we get home.

The docs came by and asked how she did, gave the go-ahead for eating, and switched her last IV medication to oral. It really sounds like as soon as she gets up to eating an acceptable amount, we might just be ready to go. It actually makes me kind of nervous thinking about it. We are going to need to add an addition to the kitchen counter to house all of her medication, I'm going to have to remember how to cook, I'm going to have to be a mom to 3 kids all at the same time for 24 hours a day, laundry, dishes, housework, etc....What will I do???? I may need to take some of the medical, housekeeping, and kitchen staff home with me for a while.

Anyway, to celebrate Olivia's great day, I got my hair chopped off. I should never admit this to the rest of the world, but I hadn't had my hair cut in well over a year. I think it had actually only been cut once since Olivia was born. How pathetic is that? So, I called up my sis-in-law and she fit me in with sheer excitement that I finally found time for her (isn't that supposed to be the other way around?) and she hooked me up with a cute new 'do!

We're ready when you are, Livs!

More pictures and a quick update

Thought I would post the few pictures of the big kids from the weekend. Like I said, I didn't take very many - just a couple at the City Museum and that's it! What a failure?!? Anyway...



This picture of Brooklyn isn't really that great, but it kind of gives a little bit of an idea of what the museum is like. There is tons and tons of metal bridges, tunnels, caves, etc... It's like a giant metal maze.

These were two really deep cement craters that the kids (and Zac) were trying to get up.
Talk about a ballpit!
They even had this tightrope that the kids could maneuver across without falling in the water.

Anyway, we really do recommend the museum. The kids loved it.

Olivia had a really good night last night. She recovered with absolutely no problems from her surgery yesterday. It was so cute today - Olivia's nurse tracked down a mat to put on the floor so Olivia could move around a bit more. She didn't know quite what to do with herself at first.

Then she decided to give it a go and try to crawl. Nurse P is in the background there laying down right on the floor with Olivia cheering her on! She is being taken care of by the absolute best people you can imagine! It didn't take long for her to remember how to do her army crawling! But, it didn't take her too long before she tuckered out, either. She might need to work on that whole energy thing. Good thing those pillows were there so she could take a little breather!

Picture post

I haven't been very good at posting pictures, so here are a few from over the weekend of Olivia and from today (pre-op). I didn't take too many pictures of the big kids in St. Louis, but I'll be sure to post those later - my camera is out in the car and I'm too lazy to go get it right now. These are all from mom's camera. Anyway, enjoy!

Medi-port

Olivia ended up going down to the OR around 5:15 tonight and they brought her back up around 7:00. She handled it all beautifully. They did put her on the ventilator and she came off just fine. No complications whatsoever. They did anticipate having to put her back on high flow oxygen afterwards, but she proved them wrong on that one! She was right back down to her 2 liters off the wall by 8:00 this evening! I'm totally intrigued by her newest device. I need to do some research to make sure I understand it, but here's what I have learned so far:
The Medi-port (I don't even know if that's the proper term, but it works for now) is completely under her skin on her left upper torso area. When it's not being used, it won't even be visible. To access it, a person will just numb the area with numbing cream and then insert a needle and get all the labs they need! It will save lab technicians the awful job of trying to get a vein in that little girl. Anyway, right now, they have a needle in it and 2 or 3 lines for access. If all goes well tonight, they will probably remove the central line from her groin tomorrow. Since they have the new Medi-port, they can just use that for everything! Pretty cool, huh?
It's actually very common among St. Jude kids to have these Medi-ports, but since they are normally down in Intermediate Care, the PICU doesn't see them very often. I think it will be fun for everyone to experiment with. Speaking of St. Jude...my mom talked with the doctor from St. Jude over the weekend. He is soooooo pleased with her blood counts and feels like it would be a great idea to send her home and monitor her very, very closely (using the new Medi-port, of course!) If and when the need arises, we can proceed with chemo! I think this is great news. She seems to be having less and less transfusions and all of her numbers have been so good.
So, as for the next goal: Olivia has a swallow study scheduled for Wednesday at 1:30. This will tell if all the food is going where it's supposed to. Once she's eating all on her own, there's just not much else that will be keeping us there!!! Shhh....don't tell Olivia!

Bad news, good news

Turns out it's a blasted sinus infection.
The bad news is - I still feel awful.
The good news is - It's not contagious, so I can go see Olivia!

The plan is to put that port in this afternoon between 2 and 3. I didn't realize that it's a surgical procedure that she has to go down to the OR for. Usually with little things, the doctors are able to do it in the room. It is possible that they are going to have to put her back on the ventilator for the surgery. I don't know much else about it, but just wanted to pass that along so you all can say a few extra prayers for her today!
The internet is still down at the hospital, so I most likely won't be able to update until tonight.

When the cat's away....

Okay - maybe not the most appropriate title, but it was the first thing that popped into my head. So, Zac and I took the big kids to St. Louis for the weekend. We had a great time! We planned way to much for such a small trip and I've caught a bit of a bug so I was pretty much out of commission. I tried really, really hard to be fun, but it just didn't work out so well. Anyway, we started off at the City Museum - awesome, awesome, awesome. The kids and Zac had a blast. I would have too, but wasn't much into crawling through tight, metal spaces. Next time, I'm in! We had no idea what to expect of this museum, but have definitely learned that the kids need to wear tennis shoes next time. Flip-flops didn't work out so well. Zac also thought to put the kids' names and our cell number on their wristbands. He's so smart! We didn't lose them, but it would have been really easy to do so. They would crawl in one hole and end up on another floor on the other side of the museum! We highly recommend this stop (A little pricey, but worth it if you have the time to spend there).
Next stop, to the Cardinals game. It was free poster day and a pretty good game with great seats. Beyond that, the kids both took turns napping. It was hot, hot, hot and they were very tired and cranky. We had planned to hit America's Incredible Pizza Company for dinner and some entertainment, but thought it would be best to just go for a swim and order pizza.
This morning we had the hotel breakfast buffet (the highlight for Zac and I). It was soooooo yummy! They actually had a crepe station. You could get a crepe any possible way you could imagine - mine, you ask? I had the chef surprise me with an apple butter filled crepe topped with bananas foster and toasted almonds. Completely sinful, yet delicious.
After breakfast, I started feeling especially icky, so Zac took the kids up in the arch, which they LOVED. They could have stayed for hours looking at pools on top of hotels, the mighty, muddy, Mississippi, and all the little itty bitty people walking around St. Louis. Then, a brisk walk to Union Station for a little trampoline jumping for Jack, fudge for Brooklyn, and a few souvenirs.
Next-free Ankiel lunch boxes at the game today (highlight for the kids!) Another hot, but great game. The kids went the the Build-A-Bear where Jack made Fredbird (aka Albert Pujols) and Brooklyn made a pink Cardinal's bear (aka Lisa) with appropriate fan attire! Then back to Peoria and back to check on Olivia, which brings us back to the title.
Here's what Olivia did while we were away:
1. Got rid of her arterial line in her arm
2. Got rid of high flow and returned to 2 liters off the wall
3. Got held a lot by grandma's and grandpa's
4. And I think all of her medications are now oral
She made big headway this weekend. I haven't seen her since I'm not feeling well. I'm going to go in tomorrow morning and just wear a mask. There are plans to put in a port tomorrow to make her blood draws easier and possible do a swallow study and start feeding. I'm sure there is probably more, but I'll have to go over it all tomorrow! Hope you all had as good of a weekend!!!

FYI

Just a note for all those of you who sit at your computers just waiting for an update on Olivia: Zac and I are taking the big kiddos to St. Louis for the weekend. We haven't told Olivia in hopes that she will be good while we are gone. We are hitting a couple of Cardinals games and doing the City Museum and the Magic House if we can fit it all in. Anywho, there probably won't be any updates until Sunday night unless something really, really exciting happens. Then I'll figure something out. My go-to person for updating the blog is going to be out of town too, so I'd have to try to tell Mom how to do it. Just didn't want anyone to worry about things while we are gone! Have a wonderful weekend!

Watch out! I'm feelin' good!

If it's even possible, Olivia is doing 50 times better today than she was even yesterday. She was able to get rid of all of her drips, her catheter is out, she's trying to get rid of that high flow oxygen, and she's feeling awesome! She still needs an IV for her intermittent medications, but there has been talk of getting rid of her arterial line and central line and putting in a PICC line (long term IV access). Then she would be able to have use of both arms instead of just her left one. She had physical therapy today and literally flipped over on to her belly and started crawling off the bed! Luckily, Mr. Physical Therapist was there to grab her! Once she realized that, she was grabbing the top of her crib railing and considering pulling herself up. She didn't even do that at home. It's amazing how she has gotten so strong while just laying in a bed for almost 11 weeks. Maybe she will realize she has legs for a reason and actually try to walk someday! Anyway, she's is doing awesome and looks awesome and feels awesome and all that good stuff. Hopefully she cooperates with all these little changes they have made today!

Toys!!!

Well, Olivia seems to be in full recovery mode from her little spell on Monday. She's been up and playing a lot of the day. Grandma called and said to bring in more toys! We are seriously going to need to get a bigger room or at least some sort of shelving unit in her hospital room. We keep taking in/bringing home toys in shifts so she gets a variety. No real big changes today. They are trying to start her on her oral blood pressure medicine for about the 3rd or 4th time. It seems as though it gets stopped quite often when she is having her blood pressure issues. Maybe this time she'll behave and we can get that milrinone off and get her arterial line out! It would be even nicer to get rid of that high flow oxygen and let the poor girl eat!

Much better.

Whew! Olivia is doing much better today. She's not back to as well as she was doing over the weekend, but at least she's on the right track. Still no guesses as to what may have caused this, but everyone is pleased that she has bounced back so well. They haven't been able to wean down her oxygen very well. She's still on 10 liters at 80%. Maybe by tomorrow she'll be ready to make some good headway. Otherwise, everything is status quo.

Evening update

Olivia is doing much better this evening. She sat up and played for a while and looks a lot better. Everybody seems to have a few theories as to what may be causing her to have these issues, but no sure fire explanation. We'll see what she decides to do tomorrow!

Hangin' in there

Olivia is doing better this afternoon. She is very, very sleepy and just looks like she doesn't feel well. The doctors are stumped as to why she has decided to do this...again. It wasn't a reaction to the blood transfusion. She has had a couple of "episodes" so far today. She'll be doing fine and then all of a sudden drop her pressures into the 40's and 50's. So, they pump her up with some albumin and a little calcium and she's fine again for a few hours. They did do an echo to check on her heart function and a chest x-ray, which wasn't really bad at all. I'm kind of hoping they call today with an infection in a line or at least something to explain what's going on. We were doing so stinkin' well!!! Ugh.

Setbacks

A rough night for Olivia - I got a call around 1:00 this morning that her pressures had dropped and she had a temperature around 104. They had given her a blood transfusion and thought it could be a reaction, so they ran tests to determine that. They also ran cultures from all of her lines. Both of those things aren't back yet. She also had to go back on high flow 10liters, 100% and have a catheter put back in. She's not been peeing well at all. Yesterday they finally decided to switch her diuretics up a little bit to see if that would help - apparently it didn't. Low pressures can also cause her not to pee, though. Who knows? Hopefully we can get something figured out today and get her back on track. We have learned to expect these setbacks when Olivia is in the hospital, but it sure doesn't make it any easier. Especially with how happy and playful she has been lately. Thanks for continuing to keep Olivia in your thoughts and prayers!

Up and at 'em!

Olivia got to get out of bed today and hang out in a highchair for a while. She seemed to enjoy it. She played with her toys, stacked her blocks, and watched her room get cleaned while she was in there. There are big plans for tomorrow! Hopefully she tolerates getting off of her milrinone and angiomax drips by morning and then she can get rid of that silly arterial line. Now that she is feeling better, they started her up with physical therapy and speech therapy. PT seemed to go well - she liked all her exercises. Speech came in and actually fed her with a bottle to see how she would do. She completely went nuts over the bottle and snarfed down 2 ounces before they stopped her. Then it proceeded to come back up. So, just to rule out any problems, she is going to have a swallow study done tomorrow afternoon. I'm actually surprised she's never had one before, but she's not necessarily had any eating problems. Just the gagging and vomiting when she feels like it. Anyway, all in all she's still doing great!

Another awesome day!

No changes for Olivia - just another great day. Happy as a clam and giving those smiles out right and left. Jack still feels pretty lousy, but had a great time camping with Max. Oh, and Brooklyn's arm is much better today - no broken bones - just a little banged up.

Off the wall

Believe it or not, Olivia is actually on only 2 liters of oxygen off the wall! The high flow system is completely out of the room and she is doing awesome! Not too many other changes. She has had a slew of visits from the nurses today since she chooses not to nap. Just when you think she's ready to conk out, she's up and at 'em again! Anyway, the way things are going, it looks like we may be able to get back to Macomb before the end of summer!
The boys are camping this weekend. It's their annual camping trip with Zac's cousin and his son. They seem to be having a good time. Jack spiked a bit of a temperature on Friday, but it seems to have just been a slight ear infection. Zac is just keeping him heavily medicated.
Brooklyn and I are back in Macomb for a sleepover. She was invited to a birthday party for a friend from school, so we came back for that. She had a blast seeing all of her friends. She did manage to fall off of the top of the monkey bars and get a little scraped up. We just got home from that, so I'm still trying to make sure nothing is broken. It was quite a fall.
Anyway, if you look at the whole story here, it actually looks like Olivia is in the best shape of all the kids!! Who thought that could ever happen?

Cautiously optimistic

My mom took the morning shift today so I could take Jack to an appointment. Needless to say, I am rather surprised with the plans for the next few days. I am trying really hard to keep positive thoughts, but this is Olivia we are dealing with. She likes to take things really slow. We may just need a few extra prayers over the next few days. Anyway, here are the plans: Her pacer wires (or jumper cables, as Zac refers to them as) came out this morning, her calcium drip is switching over to intermittent doses, her milrinone (blood pressure/heart med) will be off in 72 hours, and best of all, to try to get her off of high flow and back to a regular nasal cannula by tomorrow morning. If this last one works out, that means she may be able to eat (if she remembers how!) Now, do you see why those extras prayers might come in handy?!?
Otherwise, she is already down to 50% oxygen and 6 liters and she has been up and playing all morning.
Another crazy thing is that all of her blood counts are uncharacteristically high. Her platelets normally hang out around 30,000 and they are well over 100,000. Even the doctors were double checking to make sure they were looking at the right chart. Who knows? Maybe she's decided she would rather be at home as a family for some of the summer. I know we would.

My apologies...

Sorry about the lack of blogging today. The computer at the hospital is broken, so I haven't had any internet access until now.
Big day for the entire family today! I got to get a little squeeze in today. Dr. D. came in to assess Olivia and asked if I had held her. So, I got to hold her for quite a while. It's still pretty uncomfortable since she has her lines in, but she found a comfy spot and took a little nap. Then, this evening, when Zac brought the kids in for an exchange, we got permission for them to see her from the window. The kids were really excited and thought that she has gotten really big. Jack was a little apprehensive with the wires, but after we talked about it a little bit, he was fine with it. She was wide awake, sitting up, and gave them a couple of smiles. It was definitely awesome to see. The fact that they hadn't seen her in almost 10 weeks had to be getting to them. So, a memorable day for the family - that's for sure!
Anyway, she's doing great. They've been able to wean her oxygen down to 60% (still at 10 liters) and all of her cultures have come back negative for infection so far. They did have to re-start her blood thinner drip, but hopefully not for too long. She's definitely staying on the right track!

Drip, drip, drip...

Olivia continues to do awesome. She is off all of her sedation drips and is just getting sedation medication through her feeding tube now! They have also gotten her to a good place on her blood thinner, so they were able to take that drip away, too. As of now, she only has to get rid of her milrinone (heart/blood pressure med) and her calcium drips, and she will be drip-free! I imagine they will keep her two lines in for a while this time "just in case." She was feeling a little left out, so the nurses found her a pediatric hospital gown in yellow, so she could match our isolation gowns. (Yes, she has finally put some clothes on, K~just a shirt, but it's a start;)
Anyway, the high flow is being weaned a little bit, as tolerated. When I left this afternoon, she was still at her 10 liters, but at 90% instead of 100%. Woohoo! It's getting really hard not to just pick her up and give her some big squeezes, but until she gets that arterial line out, I'm afraid we are out of luck! Good thing God granted us with outstanding patience!

The $2,000,000 baby...

Take a good, long look... Here she is....
The $2,000,000 baby!
(And that's just what the insurance company paid!)

We got the call 2 weeks ago today that Olivia had met her lifetime maximum. I stressed out about it for about 2 days and then realized, there is absolutely nothing we can do about it. We knew it was coming and it was really out of our control (like pretty much everything in our lives these days ;)
Anyway, I didn't mention it because I was afraid of what all you crazy people may try to do. And then, lo and behold, I had actually kind of forgotten about it! But, just to ease everyone's mind, I thought I would pass along that it is all taken care of. There are a few angels in Olivia's life that have spent many, many hours trying to get things worked out and they were able to do it! Starting on August 1, she will be covered by AllKids and until then, the Department of Specialized Care for Children will pick up the rest! Even though healthcare costs in the U.S. seem to be outrageous, it's nice to live in a country that is able to help when families get into situations like this.

Doing great!!!

Olivia continues to do awesome. She had a really good night. All of her numbers are looking great and she is still happy and super excited to be off the ventilator! For good, we hope! The plan is to get the ventilator out of the room today so that way she won't get any crazy ideas or anything!
The docs made a few minor adjustments on medications today - nothing too major. They are going to try to get her up to full feeds through her feeding tube so they can get rid of her IV nutrition. There aren't any plans to wean down her oxygen today. I guess her x-ray was a little more "fluffy" today, so I imagine they want to keep her lungs as open as possible with as much flow as they can.
Otherwise, she is already sitting up all by herself again (a little unsteady at times, but still doing amazingly well) and playing with all her toys. She is in desperate need of some new things to play with, so it looks like I need to make a toy run one of these days! Her smile is priceless and when she reaches out to touch my face, it completely warms my heart! We are truly blessed. Thanks be to God!

Who needs tomorrow...

When you have today!

I always love when plans are made for a few days down the line, and about 5 minutes later, they say - What the hay? Let's just do it now.

Olivia is doing awesome! They extubated her at about 2:00 this afternoon. She is on 10 Liters at 100%, which is better than last time! She is satting 95-100% and her blood gases have been wonderful (better than when on the ventilator!) She is so excited to be free! She even got her hair washed really well and got to sit up and play for a while. I love, love, love to see that smile!

What a weekend!

We had a great weekend - all of us. We started on Saturday and took Jack, Brooklyn, Emmy and Tyler to Matthissen State Park. It's right next to Starved Rock, but a lot smaller and more kid friendly. We accidentally ended up hiking a little over 3 miles and the kids did great! Here are a few pictures:

Jack, Emmy, Tyler, and Brooklyn at the beginning of the hike (still smiling)...

Jack and Emmy decided to wade in the water in search of a turtle they heard was in there.

It didn't go as well as planned - Emmy fell in up to her neck!

The two little ones handled thing beautifully...

Except when things got a little tricky - we had to call in Daddy/Uncle Zac.

Midway done and still smiling!

I didn't get a picture at the end, but needless to say, they were ready for the hotel! Brooklyn was literally crawling up the stairs at the head of the trail!

Then we skipped on over to the Grand Bear Lodge in Utica. The kids had a blast with swimming, miniature golfing, playing in the arcade, and eating! With the 4 kids being ages 6, 5, and two 4-year olds, it went surprisingly well. Everyone seemed to have a great time. Zac and I enjoyed the hiking the best and could have skipped the waterpark, but I don't think the kids would have gone for that. I didn't take many pictures, just because there was no time.

This was the snack table. We laid out everything and the kids went to town - Jack claims this was his favorite part. How sad is that?

The kids wanted to go back to the waterpark Saturday night, but Zac and I were too tired. So...fire up the whirlpool tub and we can have just as much fun!

I also added pictures of Jack's last ballgame to a previous post, so be sure to check those out. He's quite the all-star!

Olivia behaved all weekend. She is looking so awesome. Her blood pressures have been incredibly stable, her heart rate is down, her oxygen saturations have been great, and her vent settings are way down. They are even talking about extubating her tomorrow. She was able to get rid of her catheter and the central line in her neck on Saturday. She has definitely made herself at home and is resting comfortably in her bed!

She is sound asleep in the picture just hanging out of her bed. The doctors came in and made rounds and thought it was great that she had made herself so comfy! Can't wait to get that tube out so she can roll around a bit more!

Dancing fool

I so wish I knew how to get a video to post on here. Every time I try, it never works. Olivia is doing awesome. She usually just has one foot or both feet straight up in the air. Now she has her hips into it. She sticks both legs straight up and starts rolling back and forth on her hips. It's the cutest darn thing you've ever seen. She is officially off of the epinephrine drip and hopefully they can start her on some feeds in her tummy today. They have also been able to make some vent changes, as well. Her latest C-Diff culture came back negative, so we are hoping to be able to get out of isolation soon. They are just checking on the protocol for that.
We have a big weekend planned, but we aren't telling Olivia about it. We are heading up to the indoor waterpark in Utica for an overnight stay. We invited our niece and nephew so the kids will have more fun than if it were just plain old Mom and Dad! We are leaving this morning and going hiking first at Matthisson State Park. Then off to the hotel. Should be fun - I'll take lots of pictures. So, please pray for Olivia while we are gone - that she behaves herself. And for us - that we will be able to enjoy ourselves and not have to worry about Olivia. The Grandma's are taking turns with her, so she should have lots of attention! Have a great weekend!

Baseball season is over!

What a great game last night! The kids did great. Jack even hit a double and got someone out at first! I took pictures, so I'll have to post those later. Get this - after the game, the kids all got the following: a baseball card, a pack of Big League Chew, Sunflower seeds, and a Dilly Bar. Who wouldn't want to suffer through a season for all that stuff?

Check out this all-star!

The sleepover was a little overrated - I'm not used to sleeping with Zac AND the kids, so it was a little hard to get a good nights sleep, but it was nice to be home. We were able to go out to eat after the game with some friends, so it was great for the kids to be able to play and for Zac and I to have some adult time, too.
Olivia had her ups and downs while we were away. It's never good to get a phone call that says, "She's okay now, but..." I actually got a couple of those, but all's well that ends well, right?
Olivia was able to go down on some of her ventilator settings and up and down on some of the medications. Besides her blood pressures, all her other numbers have stayed pretty consistent.

She's back to smiling again.

Olivia is doing great this morning. Basically no changes whatsoever. I haven't heard of any plans for the day. I think she is ready for some changes since her numbers have been so great, but maybe she just needs an extra day?!?
Anyway, she has been smiling away like crazy and is ready to play! She looks great, too. They increased her diuretic yesterday, so she is a whole lot less puffy. She also hasn't been too stressed out in a while, so she is nice and pink and not so purple and blotchy! Otherwise, all is well here!
I'll be going home tonight for a sleepover and Jack's last ballgame. That will be it for going home for a while for the kids and I, but we have lots of fun events coming up to keep us going.

St. Jude Run

Zac is taking on the challenge of running the St. Jude Macomb to Peoria run this year on August 2. He had originally decided to run after hearing about it from people who ran last year. Who knew a few months later Olivia would be diagnosed with pre-leukemia. Anyway, we are sending out pledge letters and envelopes to most of our friends and family. We left out a lot of the Trent/Pardieck side since you all just donated to ACS through Emmy and Tyler. So, please, please don't feel obligated to donate again if you already did.
However, if you don't get a letter in the next few days and would like to donate, drop us an email or a comment on the blog and we'll be sure to send you a letter and envelope!
All donations are 100% tax deductible and go directly to the St. Jude Midwest Affiliate here at the hospital. This will directly benefit Olivia and all of the kids of St. Jude. Olivia should be receiving most, if not all, of her chemo treatments through the Midwest Affiliate.
Thanks so much for your support!

Laziness

Sorry about the short, non-informative, lazy post earlier today. I was in desperate need of a little nap, so it had to be short and sweet.
Anyway, Olivia had a great afternoon. They turned off her paralytic so she was able to move a lot. This was the most awake we've seen her since being re-vented on Saturday. She was happy and kicking those legs all over the place which was so nice to see. Besides her blood pressures, her numbers all stayed good and she was tolerating things like a champ!

Tweakin'

Up. Down. Up. Down.
Front. Back. Front. Back.
Side to side. Side to side.
More. Less. More. Less.

Not much to report. That's pretty much the gist of it. Just tweaking things for Olivia today.