Saturday, February 27, 2010

Real life starts now

Now that our life is calming down and resembling something normalish to the world, I guess I feel that I don't have anything to write because my life is not that different from yours. I suppose that "normal people's" lives are still interesting because there are a lot of blogs out there. For a while I was just reporting news and funny stories. The truth is, when the hubbub stops, there is more time to think. Perhaps these are some of the things I should be sharing with you.

Though often Olivia is very alert and awake, responding to things, (like for the first time the other day she smiled when she heard Brian's voice over the phone) there are a lot of things that concern Brian and I. Often there are times when we're not sure if her brain is "on". Lots of staring off into space (which could also be a mild seizure) or being completely still...not responding to either of us by turning her head too. She is not putting toys back up to her mouth, but is bearing more weight in the crawling position and doing very well keeping her knees underneath her. The question is not how is she doing now. The real question in our minds is how is she doing a year from now? Obviously we cannot know, but since there is no diagnosis, we have no frame of reference for what to expect in her future. Perhaps this is a blessing, because right now we expect her at some point to be a fully functional and beautiful individual. On occasion, during a "bad day" the thought does cross our minds--what will she be like?

Now that I have "more time" I'm thinking of reading parenting books specifically for families with children with special needs. Somehow that seems limiting to Olivia to call her that, but I think it will be helpful to find more people who have the same daily routine and the same concerns as we do with their children. If you know of any specifically, let me know, otherwise amazon will be the specialist there.
At the same time, it seems silly to want to parent Olivia differently. The people that we spend life with all have regularly developing children. Is that a disservice to her? Will it be?

On a more positive note, we will be sending out official invitations, but you are all cordially invited via blog to attend Olivia's first birthday party ON her birthday on April 3. Details are coming, but we are VERY excited.

Lastly, a very special shout out to our friend Jude Murray who came home for the first time yesterday from Mercy's NICU after being about 3 mo. early in visiting his parents. We know you'll do great, Jude-boy! We're so proud of you!

Monday, February 22, 2010

Hey everyone. Just wanted to say we're still alive. It has been a week since I posted something. We've had a lot of visitors this week and were kept really busy. Olivia is doing well--pretty much done with the cold she had. I am feeling better too. Finally went to the dr and got some antibiotics.

The weather here the last week has been just stupid. There was a day last week when it was 40 degrees and the sun was out. It felt like 70. Then, this weekend we got an inch of ice and a couple inches of snow. School is out today so Brian doesn't have to work. YAY!

I guess the biggest news this week came at Olivia's expense when I was trying to be supermom and do everything at once. We made a non-emergency trip to the ER yesterday on the way to church in the evening. Olivia was eating (her tube was in and hooked up with the pump) and I was carrying her, the pump, and several other things out to the car at once like I usually do. I don't know when or how this happened, but when Brian was buckling her in he started yelling, "her button is out!"
For those of you that don't know, Olivia's feeding tube works like this: there is a "button" attached to her stomach at all times, not too thick, and this button stays in her stomach by an inflated balloon inside of her. Here is a picture. The balloon in on the inside of her and the flat end hooks up to the feeding pump. Well, I think I had stepped on the tube (which is long) that is attached to the pump while she was feeding and tried to put her in the carseat at the same time, thus pulling out that balloon through the hole in her stomach while it was still inflated. Ouch, right? My kid didn't make a noise! So, about ten seconds after it happened Brian saw her button sitting in her lap, so remembering our training from ten months ago I got the spare button and put it in the hole in her stomach, filled it with water, and went to the ER to make sure it was right. It was. We were all in one piece again, and besides being sore around her button site, no one was worse for the wear.
It was a good reminder to me, though. Taking care of my kid is not a sprint. We will hardly ever be places on time and look put together when we get there. Taking care of Olivia, like all kids, is a marathon. Being late is fine if you're taking your time to do things right. For the next little while at least I will be reminded to take my time and do things the right way.

We're all still talking, don't worry. :) And I am not the first to replace a button on a child. Most people go through a couple before the first few months. We feel that we've done pretty good so far. Mom messed things up. We need to have a sign in our house: days without a button accident: 1.

Oh, also, our absolutely wonderful friends are photographers and took some pictures of Livi and our family last week. Hopefully we will see them soon and share some with you all. We can't wait!!!

Monday, February 15, 2010

Feeling better

Smiles from my girl today.

Sunday, February 14, 2010

Love is the best medicine

Apparently thats what Tugger thinks...

Friday, February 12, 2010

Bright futures

Today we visited Dr. Taylor in Plumonology clinic. We LOVE her! First, she said since Livi is sick she can kind of hear something in the bottom of the left lung and we went for x-rays on the way out of the hospital. She is going to call later today with the results. It doesn't sound like much, but Dr. Taylor wants to keep Livi out of the hospital if she can help it. She said, actually, for being sick, she sounds pretty good. Also, when Livi is over her cold we can turn her oxygen down a bit and see how she does. Dr. Taylor forsees her being able to go an hour or two without any oxygen at all after she is done with being sick. We will take it really slowly, but are super excited about the prospect.

We also discussed with Dr. Taylor about how Livi is progessing, but VERY VERY slowly, and more slowly than I imagined. She said that is totally normal. Actually, her own son had a reaction to some medication she had to take before she had him. He didn't start sitting up until 14mo., crawling at 2yrs., and then walking alone without braces by 3yrs. She said it was slow going at first, but then they take off and he is caught all the way up now. She is very optomistc for Livi's prognosis in the long run. We are hopeful as well.

Thursday, February 11, 2010

The ladies of the house are sick

We finally got whatever has been going around. Livi's in in her head still and mine is in the chest. Its been a miserable day or two except that she actually slept great last night, which means we slept great last night.

Just one quick outing this morning and two tomorrow mornings (helmet appt and pulmonology appt) and we will spend the rest of the time at home getting better!

Monday, February 8, 2010

Liar, liar pants on fire...

So, I'm the big, fat liar. All that emotion about doing better and now its been a week. Go figure.

Not really any appts, though it has been a busy week. Olivia is doing very well. Today we got her in the crawling position (which only took one person and not two people this time) and when I shifted her weight for her she moved her own arms and legs. She is definitely learning. She still LOVES to stand up and can for a long time now. She also apparently loves to be tossed in the air...mommy's arms are so tired!

Last week we met with CCVI (children's center for the visually impaired) and they are probably going to start sending out a teacher once a week, even though Olivia slept through the second evaluation. I think the teacher mostly just works on ways to get her to focus on toys and teaches me ways to present things to her where she can understand what she is looking at.

Our OT who comes to the house is also starting to come now every week instead of every other week.

Its promising how much she is learning and how much stuff people are wanting to teach her. We are so excited about the possibility of her crawling and even walking some day.

Also, Livi is officially 10 mo old now. Can you believe it?!?!? I'm already thinking about her first birthday party. I am going to be those moms that people hate and make a big, fat deal about her first birthday. It'll be a HUGE party and we'll celebrate the heck out of her. I think she deserves it. It would also be a good time to thank everyone for their help. Brian and I have certainly not done it alone.

Monday, February 1, 2010

Smacked down to size

What a morning. I usually don't write this time of day, but it seems to be really busy already this morning. There are some things I want to say. I realize reading other people's blogs that they let people in to the most sensitive areas of their life--I have failed to do that. I'm not sure why, but my apologies anyway. I will be working on that.

Most mornings (because the word every would be a lie) Brian and I sit down to breakfast and read some scripture and a book called "Gospel Primer". The gist of the book is to give you a devotional length view of the gospel to live out on that day- reminding us all- in a bite sized way what the gospel is and what it has to do with us. So, this is what we read today. Thank you, Lord, for putting me in my place...

More than anything else I could ever do, the gospel enables me to embrace my
tribulations and thereby position myself to gain full benefit from them. For the
gospel is the one great permanent circumstance in which I live and move; and
every hardship in my life is allowed by God only because it serves His gospel
purposes in me. When I view my circumstances in this light, I realize that the
gospel is not just one piece of good news that fits into my life somewhere among
all the bad. I realize instead that the gospel makes genuinely good news out of
every other aspect of my life, including my severest trials. The good news about
my trials is that God is forcing them to bow to His gospel purposes and do good
unto me by improving my character and making me more conformed to the image of
Christ. Preaching the gospel to myself each day provides a lens through which I
can view my trials in this way and see the true cause for rejoicing that exists
in them. I can then embrace trials as friends and allow them to do God's good
work in me.

--Milton Vincent, A Gospel Primer for Christians, p. 31,32

We also read this morning the article written by the AP about Matt Chandler. He is a pretty well-known young pastor and has recently been diagnosed with brain cancer. He is an example of suffering well. The secular world is sitting up and taking notice of a young Christian man living his life for the Lord. Here is the article... Suffering well: Faith tested by pastor's cancer