Monday, April 30, 2012

Peekaboo, I see you

So, it turns out that this second admission to the hospital is from bacteria from having a trach-- something they told us would happen, I guess I just didn't expect it so soon. Honestly, she probably got this bacteria before she left the hospital a week ago, but who ever knows. So, Livi is doing wonderfully-- though she needs suctioned quite a bit now. She was coughing up nasty looking stuff over the weekend, but with the help of some heavy duty antibiotics is feeling pretty much herself. Know how I know?

 This is her pretty face. I like to think she isn't trying to actually "make" a face here.

 This is generally what we refer to as her "pirate face" because it usually come with one eye closed. Whatever it is, its sassy. Sorry Brian. You kind of look ridiculous in this one too--innocent bystander.

 We can't always be sure, but this is usually what her silly smile looks like. She gave all the cute smiles out before I got the camera out. She's not angry--I promise. Didn't anyone see that episode of Friends? She's just like Chandler--when she tries to smile it just comes out wrong.

This one is new. I actually don't know what this is exactly except maybe surprised?

Sorry, honey. I know I just slathered the internet with naked pictures of you looking ridiculous, and you're 3 now and probably too old for that. I just couldn't help it. So, Livi's facial affect is generally less than other kids. I don't know if its part of her brain that the seizures get a hold of or what, but mostly Brian and I see a lot more of her silliness than you probably will in public. So, here is a myriad of examples of the silliness from about a total of 10 minutes time. Needless to say, Brian and I had a FABULOUS visit.

Also, we expect her home either today or tomorrow. And we may be providing you with pictures of her coming in the house differently this time-- you know "rampish".

Friday, April 27, 2012

Lucy, I WAS home

Thats right. If I don't blog everyday at our house we'll miss something. Olivia, thankfully, came home from the hospital on Monday. BIG YAY!!! It was a huge milestone for us and after a three and half month stay in the hospital and many times when we weren't sure we would be able to, we brought her home--where she belongs.

(obviously, she had some issues with sensitivity to direct sunlight. so sad.)

Tuesday was spent saying goodbye to Nana and Papa from Texas and settling in. Wednesday Brian took off work and we had a family day which also included the first outpatient therapy session since January and a quick visit from Joplin Gpa.

( i mean, look at that determination. come on, people, my girls have spunk)

We also spent some time as a family outdoors. Sunshine plus snuggles equals a happy momma.

Wednesday night brought a low grade fever, but thats it. Hoping it was a withdrawal issue, we jumped into Thursday. As you could guess---it was not as we had hoped. Thursday brought a few more fevers and finally Thursday night we had to give in and bring Livi back to the ER with fevers, increased heart rate and decreased oxygen. She obviously has some kind of new infection.

So, here I sit, in Livi's hospital room because I'm staying with her tonight. We have no idea whether this will be a few days and some antibiotics and she's good, or if the last horrible stay was a shadow of whats to come. Right now she's stable and only had one really low grade fever today. Brian and I did have a meeting with some very close friends and some hospital personnel who are very close to our family. We discussed some possibilities for Olivia's care at home if we can get her there and with our family's options for not putting her through what happened last time over and over again. Luckily, the Lord has blessed Brian and I with incredible insight from very knowledgeable and God-fearing people and a unified heart on all "quality of life" discussions. Please continue to pray for Olivia, but also for Brian and I to make appropriate decisions that honor Olivia as a person if we get to a fork in the road.

I plan to keep you updated better than I have so far. Its so hard to think about blogging when I get to snuggle my girls at home, though.

Saturday, April 21, 2012

Does this blog make me look fat?

So, we're trying on a new blog. I had no idea and no time to figure out how to make it cool myself, which was why the old one was such a disaster. Thanks for putting up with it. Now, though, you don't have to. My wonderful friend Kelli decided to rescue me from ugly blog hell (yes, there is such a thing) and totally revamped Catching up with the Keys. Thanks, Kelli. Leave a comment for us and let us know what you think. Over to the right and down some...down some more...there is a button for Kelli's up and coming design company on the side. Go ahead, click on it. She's awesome and a very dear friend.

So, Livi is out of ICU and I finally started taking Gabs up to the hospital some (though that happens to be particularly stressful when its just me with the two of them.) Brian got to go with us one day last week and we asked the nurse to take a picture. Now, realize that we will probably not have one of those perfect-looking family pictures for some time now. Livi won't ever look at the camera, Gabs will be doing something she shouldn't (like trying to escape, even though she can't crawl or walk yet), and I will be laughing, as I am in this picture, because its all so ridiculous.


Tuesday, April 10, 2012

Milestones of 3s

I have a 3 year old. Thats right. Livi is 3 now. We had a FABULOUS party at the hospital for her in ICU. The Child Life department there let us parade 15 people into a conference room to have cake and go in a few at a time and see Livi. They decorated her room with balloons and banners, brought in wrapped presents, decorated the conference room and brought in a delicious cake-- just for my girl. It was so fun! Congratulations, Olivia! You are 3 and your dad and I could not be more proud of you. You may be one of the few 3 year olds that didn't run around or eat cake on their birthday, but you are here and you are a fighter. You are learning and growing (quite literally) every day. We see more of the truth of God in your life than in any other and for that we have to be eternally grateful.

The other 3 milestone? 3 months in the hospital. Boo. But, Livi is doing great. She is off the ventilator and is, as of today, on the smallest amount of oxygen they can put her on during the day and on some CPAP at night, though they are planning to try her on just oxygen tonight instead of the pressure of the CPAP. She is more like herself, though still having some trouble with withdrawal symptoms from the sedatives. We do not have a timetable for coming home yet, but it is not too far out, as long as we can keep her from getting sick again.

Here is an Easter picture with her in her Easter dress. A girl has got to show off her holiday threads, even in the hospital...

Please excuse the goofy look on her face. I have no idea what she was doing, but this was the best one of the three of us anyway.

Monday, April 2, 2012

We want your sweat and your money!

Thats right, people-- its Trolley Run time again! If you weren't around last year, the Trolley Run is an annual 4 mile run (or walk) where the proceeds go to benefit Children's Center for the Visually Impaired, where Olivia goes to preschool. 

Olivia does not have glasses, but has a diagnosis of CVI (cortical vision impairment). CVI is a result of her seizure disorder where the information from the part of the brain that works for the eyes sends signals to the eyes but those signals sometimes get lost or confused. CCVI has been working with Olivia for 2 years now. The first year we had a vision teacher come to the house weekly. Olivia would not look at much of anything except light from a window or a light-up toy. She was behind in learning because she could not take in information from most of her surroundings. Our wonderful teacher showed us how to evaluate Olivia's sight and how to challenge her brain by giving her different things to look at in different parts of her vision. Olivia still struggles with how her brain relays information to her eyes, but Brian and I have so much support and education to work with her at home and Olivia is blossoming from all of the help at preschool. This fall Olivia was old enough to start CCVI's preschool program and we have been totally amazed  at how the socialization from the classroom has caused her to grow and mature. There are both children with special needs as well as peer learners (kids who don't have special needs) in Olivia's class. The mix of education, interaction with other kids and one to one therapy has made CCVI is a huge part of Livi's success this year and we want to say "thank you" by enlisting your help.

The Trolley Run is CCVI's largest fundraiser. If you don't live in Kansas City, its a really big deal. Often people in the area have heard of the Trolley Run, but don't know what it benefits. CCVI uses the proceeds of the Trolley Run to help with tuition for families who don't have aid from the state or the school system. They also use the proceeds to buy supplies for the school year, update their facilities, take the kids on field trips, and tons of other essential stuff.

Here's the fun part. You can just give money...OR you could sign up with run/walk with us on April 29 by joining Livi's Keys to Success (our team) and hang with us that Sunday morning. Obviously, we realize not everyone can be here. Here is the link to our team page: Livi's Keys to Success
On the right there are places to both donate and register as a team member. This year our goal is to raise $2,000 as a team, but we'll need your help. Please help us say "thank you" to CCVI and all of the absolutely wonderful people there who love Olivia and so many other kids.

See? Doesn't it look like fun?