Friday, February 25, 2011

We're home!

Livi came home this afternoon. She is doing great so far and I have help from my parents with Livi's care until Brian comes home from his conference tomorrow night. Thanks for all the prayers and we will let you know how things are going later this weekend.

Thursday, February 24, 2011

Down, but not out

I realize after a few phone calls yesterday that my cynicism is worse than I thought. Apparently it seriously skews my expectations and therefore skews your understanding of the situation.

Hear this: Olivia is doing much better today.

Like actually doing better (as far as what we can medically and scientifically measure) and she looks more like herself. She was a little puffy looking yesterday and her tummy was a little harder than it should have been, so after a slight prod from me the medical teams gave her some meds for both of those and she looks great. (I could totally skip medical school--I know!)

She is still on a little bit of oxygen, but as low as their regulator will measure. She is breathing great and just coughing stuff up every once in a while. Her heartrate is still higher than it should be, but she is still having a few fevers a day, so that is pretty normal. She was awake for a few hours yesterday afternoon and cuddle with--who else, but Brian. And did some playing and holding hands.

In other news, this morning before Brian and I returned to the hospital (after going home last night and sleeping about 9hrs) we went on a tour of CCVI where Olivia will go to preschool in the fall. I have drafted Brian to blog about our experience there some time this week, but suffice it to say even though we have currently raised over $800 for the walk we are newly motivated to hit you all up for more donations. It was amazing!

(I NEVER do this, but I just edited that last paragraph and realized how often I use commas in inappropriate ways, just, because, I, feel, like, it. Seems, like, a, nautral, way, to, show, my, expression., Sorry for doing that ALL the time. I know I do, but I like commas and you can't technically stop me from using them. So there.)

As you can probably tell I am in a much better mood today despite the cold temps and blowing snow. Yes. Freaking snow again. Anyway, I am in a "better mood" because I am seriously seeking to understand my cynicism in a spiritual way that allows me to believe and trust in God more. It seems silly. He has obviously done so much for us and cared for us so wonderfully. Why would I continue to distrust Him?
Part of the answer comes from an amazing book I am reading: A Praying Life by Paul Miller. This is what he says about cynicism:

The opposite of a childlike spirit is a cynical spirit. Cynicism is, increasingly, the dominant spirit of our age. Personally, it is my greatest struggle in prayer. If I get an answer to prayer, sometimes I'll think, It would have happened anyway. Other times I'll try to pray but wonder if it makes any difference. Many Christians stand at the edge of cynicsm, struggling with a defeated weariness. Their spirits have begun to deaden, but unlke the cynic, they've not lost hope. My friend Bryan summarized it this way: 'I think we have built up scar tissue from our frustrations, and we don't want to expose ourselves anymore. Fear constrains us." Cynicism and defeated weariness have this in common: They both question the active goodness of God on our behalf. Left unchallenged, their low-level doubt leaves room for bigger doubt. They've lost their childlike spirit and thus are unable to move toward their heavenly Father.

Thats my problem too. I keep waiting for the other shoe to drop about almost everything. It is not a joyful way to live and I am insistant on allowing God to change that in me. As a side note, I noticed Mr. Miller up there uses a lot of commas too. Maybe I got that from him. :)

Thanks for the prayers. I will keep updating as much as there is to update and look for a post from Brian telling you about CCVI yet again. Also, my spell check has checked out. I am the world's worst speller. Sorry.

Wednesday, February 23, 2011

Home sweet hospital?

Yes, thats right. All my boasting in our four months without being inpatient has finally come to an end. Olivia and I ventured to the Children's Mercy ER last night around 9pm with some coughing, lots of crying, and a 104 degree fever. The fever goes and comes but her heart rate is still staying higher than it should, which smacks of last time we were in back in October and she ended up in ICU with heart failure. Now, that took several days and I'm not saying she is that bad yet. Just remembering and being cynical. I'm trying to work on that. Not going very well is it?

Keep you up to date.

Monday, February 21, 2011

To post or not to post...

So, I know its been a week and half since we posted last. A lot has been going on and I have been contemplating how much to share of whats been going on. So this morning I woke up and decided I'd just share it all. What the heck, its just on the internet, right? First of all I LOVE this picture of Brian and Livi. This is from last week when we went to the cardiologist for just a regular check up. Quite the view, huh?

HELLO Kansas City! You are looking beautiful!

Last Sunday (just a few days before Valentines Day) Brian and I miscarried for the second time. I was really early--just not quite 5 wks. We're still not sure why but my hcg levels were low already by the time I went to see my dr. that Monday. I went back to the lab today to have my levels tested again and are waiting to see what they say/suggest at the dr. The difficult part was that emotionally this miscarriage was so different than the last one. There are a lot of variables that could explain it, but it has been difficult for me because I still have yet to cry about it. Was I disappointed about it? Obviously. Were we sad? Of course. But the sting of losing a child was not the same. Last time I was almost 10 wks, much further along, and had seen the heartbeat and had a sonogram picture. This time all we had were light lines on a pregnancy test. I hope that the difference in emotion was not my being pessimistic and assuming I would miscarry again, but honestly there were a few days when I did feel like that. We would, of course, appreciate prayers moving forward. We're just not sure if we need to be changing our plans for our family (as in number of members) or just to keep trying and being optimistic.

Now, probably for the part some of you have been waiting for. We did have Livi's visit to the neurologist in St. Louis last week. It was helpful and optimistic in some unexpected ways as far as treatment, but about like we expected. We are not currently making any changes to her treatment until the dr. can get the rest of Livi's tests and records from Mercy. She did have some ideas about different medication, which was more optimistic than we had heard. We did talk about the ketogenic diet being a possibility and she was very determined to both treat the seizures and look for a source to Livi's neurological issues. It was an extremely helpful visit and we had a very good time. At the risk of being frustrated about driving 4hrs to see a dr. in the future, we decided to make little family vacations out of the visits. This time on Tuesday night we had dinner with some wonderful friends. After the appointment on Wednesday we spent the afternoon at the zoo just down the street. That was the day it was 70 degrees. Jealous? Brian has some great pictures but they are all on his phone and we have been too lazy to get them on the computer yet. Soon.

So, we will be posting more regularly again. Just needed a little time to work some stuff out. Thanks for being patient. See you soon.

Friday, February 11, 2011

Thursday, February 10, 2011

...and a little of this...

Yesterday started out with a lot of this. (It was a one nap day)

Then, when the mail came we got some of this. Thank you University Baptist Church Fayetteville. We love you too. All of our favorite things!

When we took Livi to therapy it looked a lot like this. (Practicing rolling...we went slowly. I wanted to try it. They said "no")

And then she got the hang of it and it looked like this.

What a great day!

Tuesday, February 8, 2011

Thawing out

Yes, in case you can't tell thats Brian last week the second time we shoveled our front walk. SECOND. Normally by now much of the snow would have melted, except for the subzero temperatures here in Kansas City. Today, the high was 8. As in degrees. My poor furnace has been running all day trying to keep up in this old house.

Mostly we've just been hunkering down and snuggling in since the weather last week. Olivia spent quite a bit of last week sleeping. I don't blame her. I don't know she is ready for spring or she is just trying to show off her new attitude, but she's been a different kid lately. As in a 2 year old kid. As in loud, unwilling to sleep in her own bed all of a sudden (a battle Brian and I either are or will eventually win. She is does NOT sleep with us), yell-talking constantly, and giving me this face a lot...

...not cute. I know. This is right before I tried feeding her some today. She loves barbecue sauce (strange, I know) but even today Olivia has her limits. This episode ended in crying. Her--not me. At least not this time. I am grateful that she is already asleep just an hour after I put her to bed tonight. The past few nights its been 3 hrs of yelling (not crying) only to be quieted when held or eventually when she gets her meds at 10:30pm (the only time I was happy to give her anticonvulsants).
Big things on tap for us the next few weeks: next week we are going to St. Louis to see a neurologist about a second opinion. If they think its a good idea we will be pursuing the ketogenic diet treatment for her seizures pretty soon after we get back. I could put a link to the diet, but there are so many and I'm lazy. Google it.
In two short months our little bear will be turning 2. (stunned silence)
And, just a few short weeks after that we will be participating in the CCVI Trolley Run here in KC. 4 miles, worth the sweat as long as we raise some more money for the Children's Center for the Visually Impaired. Recent post on the run here!
That link has all the information on how to sign up to run with us (because we'd love it) and how to donate money (because we need it)
Foot of snow aside it has been a good week. Much to look forward to this weekend--like 50 degree weather. Look forward to pics of us running around in bathing suits.