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.

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.

Enjoy...

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.

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?

See my pretty face?

The surgery went well and the trach is in place. Livi was trying to fight through the sedation today to say "hello" but they are keeping her VERY sleepy until tomorrow--then they will start to turn down her sedation.

Isn't she beautiful?

Surgery tomorrow

I haven't actually talked with Ear Nose and Throat in a week, but Livi's surgery is still supposed to be tomorrow to get her trach. At this point we are almost excited about it just so we can move on. Livi is actually not sick any more and has just been hanging out on the ventilator all week waiting for surgery, which stinks, but are options are pretty limited if we want her to be ready for surgery. She has been on a lot of sedation (because she has developed a tolerance for those medications, she needs more than before for the same effect) which means the withdrawal will be more difficult, but we can start weaning sedation as soon as she has her trach in. It will be so strange to see my little girl with this new thing on her neck. It'll take some getting used to, but the prayer is she might not have to have it for forever, just depends on how she develops neurologically. She will have it for a minimum of a year, though. So, in light of that, here is a beautiful picture of my girl (vented, but beautiful) without her trach.

Her tongue is out because I had just put some chapstick on her lips and sedated though she might be, she is still her ornery self-- licking all the chapstick off the minute I get it on there.

Gabs has decided she is a grown-up now, sitting in her bumbo and playing with toys. This monkey sings and dances and she LOVES it--babysitters take note.

Sorry the posting has been few and far between. Partly because we have a computer on the fritz and partly because Livi's been the same--sedated and waiting for surgery all week. We would LOVE your prayers tomorrow and we'll let you know whats up as soon as we know.

Come and hear...

So I (Brian) have been putting this off for a number of days. Not because I didn't want to write, mind you. It was simply because I have been burning it at both ends for a couple of weeks. I am rested and up early this morning, so here we go. I can't actually write to you about all that the Lord has been teaching us in this season in one post. That would be far too long. The plan is to post several times to break it down into smaller chunks.

It occurred to me about a month ago that many of you were asking how we were doing in large part because of your concern for us, but also because you are trying to make sense of everything just like we are. Hopefully this one and the coming posts help you just as the scripture, thoughts, and prayers that give rise to them have helped us.

So I invite you to walk with us for the next few days with the words of the Psalmist...

Come and hear, all you who fear God,

and I will tell you what he has done for my soul.

Psalm 66:16