Breakfast with Santa

We had a fabulous week! Our big event was a breakfast put on by an awesome new magazine called Parenting Children with Special Needs. They are linked there. They put out a new edition every two months in the Kansas City area with great stories and resources for people who parent or care for kids with special needs. They have been a fantastic encouragement to us just through the magazine, but this past Saturday we got to meet a bunch of families and people who work for the magazine. It was fantastic! We met a Zona Rosa and got breakfast and Olivia got to sit on Santa's lap. You'll have to bear with me. These pictures are in opposite order from what I wanted, but I'm just too lazy to switch them.

This is Olivia (the second time on Santa's lap), Santa, and the elf is Stephanie, the wonderful woman responsible for starting up the magazine. If you get on the website the first edition is about her son.

Not that it needs any explanation, but this is Olivia the first time seeing Santa--asleep.

The three of us eating breakfast before the big man got there. Olivia, still asleep.

When we first got there. Really excited. Probably also hating the Santa hat.

The breakfast was a great experience for Brian and I. We met several people and just felt comfortable being with other families with children with special needs. In addition to people from the magazine, we also met a woman from a local charity that helps provide mobility devices to special needs families including adaptive bikes, wheelchairs and chairlifts for cars. Please check them out and support them however you can. Their name is Variety Charity of Kansas City.

We realize that as a family we have been incredibly blessed to receive all of our adaptive equipment without paying for it ourselves. There are those that really need it and cannot find the resources--please, please help them out in any way you can. This adaptive equipment, unfortunately, is all very expensive and is impossible for many families who are already in a huge financial strain because of medical bills.

We are now looking forward to a wonderful Christmas at home with Nana and Papa who should be arriving tomorrow to beat the snow. We will post plenty of pictures, including ones with the new apron Grandma just bought for Olivia. Too cute for words.

the jekyll and hyde of the holidays

I LOVE this season. I have always loved it. The "feeler" in me adores the smell of Christmas from trees and candles, drinking hot chocolate, bundling up outside and snuggling inside. Brian usually gets onto me for trying to extend the Christmas season too long by putting our tree up the day after Thanksgiving and not taking it down until New Years. But this year I find myself oscillating between excitement and sadness--like I think so many people do.

We love celebrating the things that have happened in the past year--the people that are with us and the things we have accomplished. This year we are so excited that it seems Olivia's Christmas will be much jollier than the last. She is so active and involved now which will make our celebrating all the more fun. There are so many accomplishments we could celebrate too, especially for Olivia, but also for the rest of our family. We have so much to be grateful for and oh so much to hope for next year.

The holidays are also a time where many people feel deep sorrow because of the loss of loved ones from their lives. It seems so evil sometimes that in the midst of what seems like the whole world celebrating that some people are not able to think of anything but loneliness. I will have to say that this has not been so poignantly the case for me until this year. Still, stuck to our fridge next to the reminder to get my thyroid checked again, curled up in a little scroll is the sonogram picture of the baby we miscarried last September. I have dated it September 2. September 3rd we went for another sonogram and learned the baby had not made it. Sometimes I can't decide whether it is a blessing or a curse to have this physical reminder. Usually I forget it is there, but this morning it is sitting next to me on the couch while I'm typing, not getting lost next to the shopping list. I think I kept it on the fridge because I am at such a loss with what to do with it. Put it in a photo album? Keep it in a drawer somewhere? I don't have the balls to frame it or the guts to throw it away--so it just stays there on the fridge in limbo. I guess I have been too-- in limbo.

While I have convinced myself I'm ready to try getting pregnant again I'm not really sure if I am. What do you do with the leftover feelings? Put them in a drawer somewhere too? Are you ever "ready to move on?" My biggest fear is forgetting--is not giving that baby the remembrance and the honor that it deserves. I never want that part of my life to become hazy where I don't remember if it was my life or if it was something I saw on tv, or a story someone told me once. I feel like sometimes my past is already like that to me, and I am afraid. Afraid that this will become one of those memories too. Afraid that if we get pregnant again it will be like the miscarriage didn't even happen.

I don't know-- I'm just a rookie at this, but I don't feel like you can ever really get over it. Not that you can't move on, or be excited for friends when they get pregnant or have babies, or even be excited for yourself when you get pregnant and have babies. You let this little teeny tiny life change your heart and change your life and you carry it with you in a helpful way that allows you celebrate the good things in life differently than you would have. Of course easier said than done. I am not there I don't think, but making my way slowly but surely.

So, I think I will keep the picture and the feelings close to my heart and just let the painful part go. That will allow me to celebrate my daughter and my family and this past year best. And we can celebrate the baby that we had for 9 weeks. We were blessed to have them that long. Thank you baby and thank you Lord for letting us look at life differently--celebrate differently--love differently.

Its beginning to look a lot like Christmas

Things are still winding down from our week trip over Thanksgiving, but I finally got the Christmas lights up, the mantle decorated and the tree up. Those pictures are at the bottom of this post. Today, my darling Olivia had a visit from her vision teacher who found the switch we are ordering for her at Coalition for Independence and brought it to us along with a power link, the thing that allows us to hook the switch up to control anything that plugs in. So today we tried it. First we let Olivia turn the mantle Christmas lights off and on. As soon as we showed her what it did she remembered and went to town beating the heck out of the switch. Then we plugged it up to a computer to allow her to play a game where when she hits the switch the balloons pop. She played for a full hour without much of a break and yelled at our vision teacher when she took the computer because she had to leave. The change in her is incredible. She is getting so much more response/input than before and is having a ball playing for the first time in a long time. We are so proud and grateful.

I don't know. You tell me. Does this look like an ornery face to you? She is hitting the switch to the computer.

When she hits the switch one of these balloons pops. There is also music playing.

Now she is turning the lights on the mantle on and off.

Our Christmas tree.

This is our mantle. Yes that is still the same color paint sample we put up a million years ago. No we have no painted, but I have decided on a color. Of course not that one. One of these days...

This is one of my favorites. Last night when we were waiting for daddy to come home.

Happy 1 Year Anniversary to my Blog

This might be the most difficult post to write so far. Olivia is doing great and our family is doing great. Really great. The difficult thing is reflecting on how terribly, in retrospect, we were doing one year ago. We would have never said it like that--those of you who asked know. We would mostly smile and say we are doing "good" or "fine". In our eyes I think we were. It is through the grace of God that we did not see the true rawness of our situation at that time. We believed we were shielded, not from the truth of the facts of what was going on, but from the sheer intensity of the emotions of the present and the possible future both for Olivia and for Brian and I.

There was several months last winter when all of us, including some doctors and caregivers, thought it would be a real possibility that we might either lose our daughter or that she would be confined to the physical, emotional, and intellectual status of a vegetable. For some families and communities this is a continuing fact. I can honestly say those must be the bravest people in the world. If Olivia was awake, she was staring at seemingly nothing, not showing any affect and hardly moving at all. Throughout the winter the Lord gave us strength when we faltered (like we did so many times a day) to trust in Him rather than in the progress of our daughter. Not everyone gets a happy ending. Not everyone even gets a happy middle or beginning. If we have learned one thing in the past year it is that the Lord's provision, love, and even blessings do not always come in the perfect package. We do thank the Lord that Olivia is better, of course. But we do not trust in Him because He has allowed her to get better. We trust in Him even if He doesn't, because Brian and I have gained the most insight into the heart of God and His desire for the church community at our very worst moments. His love is not dependent on giving us all the things we immediately desire.

I didn't really intend to say any of that when I started, but there it is. Really I just wanted to say thank you to you all. Not just for reading the blog, or for praying (which of course we greatly appreciate) but for showing your love in concrete ways to us too. In bringing us meals when we could not eat drive-thru food any more, in doing our laundry when we ran out of clothes, in comforting us while we cry, in laughing with us while we celebrate, in sending unexpected gifts when we were discouraged, in showing up at our house and forcing us to leave while you babysit and in a million other seemingly small ways that changed our lives. You have all changed us into people who are learning to care for each other. Thank you and celebrate the intense and unexpected life of my daughter over the past year with us.

The Thanksgiving Tour 'O the South

I haven't blogged in about 10 days--I know. But this time there is a good reason. We have been gone from KC since a week before Thanksgiving on our family tour of the south land. We dropped the dog off in Joplin with my parents for the week, got some sleep, and then made a 7hr journey to Hallsville, Tx--where Brian is from. We had a fabulous time! Livi did great, I wasn't a total moron and actually packed enough of everything, and Brian got back to his roots:

This is Brian and his dad cutting down a tree for fire wood for the winter.

Livi had an awesome time catching up with Nana and Papa and actually convinced them to come brave the KC winter for Christmastime:

Sorry, Nana. I know you didn't have time to get ready this morning. Too much cuddling going on.

The Wednesday before Thanksgiving we left TX and drove 5 more hours to Fort Smith, AR where my sister and her husband and my parents (and my sisters adorable house just screaming for Christmas decorations) were waiting on us. We stuffed ourselves again on Thursday with a lovely feast and had the best time laughing and carrying on:

No I am not posing as Mrs. Clause, mother. Just simultaneously decorating and waiting for stuff to come out of the oven. Geez.

Uh, I have no cutesy introduction to this photo. It just is what it is:

Sorry, Mal. Hate to do that to you. Well, don't HATE it...

After that there was actually another stop in Joplin on Friday to pick up the dog and have Thanksgiving with the grandparents, my brother and sister-in-law and uncle, but by then we were so stuffed and tired that we forgot to take pictures. Sorry.

We got home on Saturday, watched the Pigs beat LSU (GO HOGS!), tried to rest yesterday, and then showed up for PT and OT this morning at the hospital at 8:30. It started out well. Yes, this is the "well" part. There are no picutres of the "not well" part also known as sleeping through OT. Andrea (our awesome PT) is working on walking with Olivia. She, of course, is making Livi do all the work, which is why she is so upset. Livi did take a few steps on her own today with a walker. YAY:

Doing well.

And beginning "not well".

I do have some more things to say, but am exhausted as I'm sure you are from reading this and will post later. Hope everyone had a wonderful Thanksgiving!

Look, ma...one hand!

Sorry we've been so negligent. We are in the throws of the holiday season early at our house, unpacking from the lake and repacking to see Nana and Papa for the first time at their house this weekend. We will also be seeing Uncle Thomas and Aunt Amy for the first time in almost a year and a half! We can't wait! So, driving 9hrs away warrants more planning and laundry. Thats what we've been doing.

We have also been busy being awesome this week--well, Olivia has anyway. Last week at OT she took 5 bites of applesauce from a spoon! She did great the first two bites and was kind of half out of it for the next few, but we are so proud and I will be taking the camera this week to PT and OT. She did NOT go in the pool as planned for PT last week because she was already sleepy (from lots of appointments earlier that day) and the water temp in the pool is enough to make anyone drowsy, so we'll try again this week.

Yesterday Olivia had whats called an Assistive Technology Evaluation. There are lots of tools and thingamagigs to help kids like Olivia make decisions on her own and act more independently. She has used whats called a "switch" before. I think I have told you about it, but it can hook up (with the proper technology) to anything that is either battery powered or plugs in and with a click from her hand she can make music go on toys, turn the Christmas lights on and off, turn the TV on and off, choose options that say things for her like "I want a song" "I want to read a book" and whatever we record them to say. Its really complicated and awesome, so I'll just leave it there.

There are lots of different kids of switches. A lot of them look like a little mouse for a computer and she touches it to make things go, then picks her hand up and has to touch it again to make it go again. Yesterday during the eval they got out a switch I had never seen before. It look like a joystick with a vice grip on the end to attach to different things at different angles. Yesterday we attached it to the tray on her kid kart. To make it go she can either hold the joystick switch, bump it (because it automatically spring back), or lay her hand on it if we turn it sideways. The following pictures are amazing because Olivia is working on a computer program that allows her to make race cars roll across the screen when she touches the switch, which she did on her own yesterday--a lot.

That red thing is the switch. They wrapped it in red mylar so its easier for her to see and interesting for her to feel with her hand. She is not looking at the camera because she is watching the cars.

No, its not Christmas at our house. Christmas and therapy usually look the same. :) Here she is looking at me, I'm pretty sure telling me how cool this is and how awesome she is!

You can see one of the race cars here (which also have cute little numbers on them) and how we can position the switch so it is super easy for her to access. She just gives it a little nudge. That is Kathy in the background too. Our awesome vision teacher who we just adore.

I know this post is longer than my usual. If you read so far please bear with me for another second. Yesterday I was amazed to tears to see my daughter take steps towards independence. For most kids that begins with mobilizing themselves, and we're on the road to that, but Olivia has not been allowed by her own body to choose things for herself hardly ever. (Excuse me, tearing up again). Teaching her how to make decisions on her own and watching her learn to carry them out is my dream for her and this is one of the first steps. I am so proud of my beautiful daughter. She works very hard day in and day out for very little result, but she keeps trying and she is becoming stronger and more independent as the days go by. I cannot say enough good things about the professionals in our lives who help me help her. Thank you, thank you, thank you Kathy and Tammy and Sherri and Andrea and Janelle. Who knows where we would be without you. You inspire me to inspire Olivia.

Weekend at the Lake

A huge thank you to some long-time, wonderful friends of the family who offered up their amazing new lake house for our family to use for the weekend. We had a wonderful time bonding with nature and eachother. It was a much needed weekend vacation for Brian and I, especially, coming off of a two-week stay at the hospital for Olivia. We were really blessed to have some time together away from the city and everyday pressures and were allowed to focus on our family. I don't want to brag, but I did catch quite a few fish, though the biggest fish goes to my mother on our last night there. What a stud! Here are some pictures from our fabulous time. Enjoy!

Family shot

My man!

Me and my sister, preparing for battle.

The dock--and quite a view!

Halloween pics

Olivia's Birthday Gift to Brian...

...coming home. Yes, in fact I am writing this post from our home office with Olivia sleeping (maybe) in her own bed and Tugger sleeping on the floor outside her room. It has only been about half an hour, but we are so happy to have everyone home, except, of course, the birthday boy who is at work.

Olivia did come home with some new medication, one that costs $1300/mo. God bless medical insurance. Guess thats all I have to say about that. She is doing fabulously and is completely herself. I can't wait to dress her up in her new Halloween outfit (courtesy of my sister's in-laws) outside in our leaves with her pumpkin smiling at Brian. Of course, the probably of all of these things happening at once and getting it on film is pretty slim, but we'll do our best.

To the other news of the day: my absolutely fabulous husband is turning 28 today! Happy Birthday, baby! We were laying in bed last night talking about what we thought our lives would be like ten years ago. It was funny because of course we hadn't even met each other yet. Brian would be a sports agent or finance guru living in Dallas driving a fabulous car and living in a fabulous house married with at least one child. Sorry that didn't all come true, sweetie, but everyone thinks your ten year old Nissan truck is pretty fabulous!

So, maybe we didn't get everything we wanted back then, but we feel pretty friggin lucky anyway. People may look at us and think we don't have much, but we do have a wonderful marriage (most days), a beautiful daughter who is such a hoot, a dog who thinks he is a child, a nice house in a city we love, wonderful family, amazing friends and jobs that we absolutely adore. So what if this isn't where we saw ourselves ten years ago. I'd say we made out even better than expected.

The only thing I can say to follow that is that the sovereignty of God is an amazing thing. Its a good thing we don't get everything we think we want. The unexpected usually proves to be a better and more interesting path anyway.

Livi update and fall pics

Here are some pics from a few weeks back at the--you guessed it--Louisburg Cider Mill. Brian and I had a good time and Olivia, well, she slept. Of course she was awake for the rest of the afternoon as soon as we got back in the car. And of course I have no pictures of that. We have a ton more pictures, but in a hurry to get back to the hospital.

Last night when Brian and I called she was going back to sleep so we stayed home. So I will be trudging up there this morning and will be giving you an update soon. I figure she will be going home sometime very soon-the next few days. We are SO excited to have our monkey back home.

Also, this fall has seemed particularly beautiful and lengthy. I promise I will post some more beautiful fall pictures for those of you who don't live in such a lucky geographic region, but here is the "fire tree" outside of our house. Honestly, when the sun hits it in the evening and its this color it looks like it is actually on fire. I know, we're so creative.

We saw a smile!

So, I thought they would turn Livi's settings down pretty slow (because thats what they told me) but she must have pitched such a fit that they did it early because last night when I got to the PICU they had just taken her off of bipap! Her face was even cuter than I remember. I didn't get to hold her last night because she was so tired I didn't want to bother her, but I definitely plan to today.
She was on 1L of oxygen on her cannula, but she was doing fabulously, so I don't know if they have turned her down overnight or not. I figure we will move to a regular room today some time.

Thanks for the prayers. The Lord is good to hear them.

Feeling better

Just really quickly...

Livi is still on the bipap but they are turning down her settings and turning down the amount of "sleepy medicine" they are giving her. She is definitely working on being more roused. She was awake for a few hours this afternoon when I was there. We hope she will be off bipap some time tomorrow. Also, her echocardiogram looked better today than last week. Her heart was almost down to a normal size which means it is working much more efficiently. The cardiology team is considering some preventative measures like perhaps medicine and maybe oxygen again just to make sure the sicknesses this winter don't land her in the same place.

In a hurry, will blog again soon!

Quick PICU update

Things have settled down for Livi since being in the PICU. Of course it took several hours and tons of personnel before they got a more durable IV line on her, but thats just kind of her style. They see her name here now and remember her from the last IV marathon--not really the way we want to be remembered, but I guess we'll take it.

She is on the bipap now and her heart rate is hanging out much lower than it was, which is great. She just needed a little extra support, but she is definitely not a fan of the mask she has to wear. It obstructs her hands to eyes for rubbing when she is tired. Brian and I were just in there and she was screaming at everyone for making her so uncomfortable. She is getting a breathing treatment soon and will calm down for the night, hopefully.

It appears that she might be getting a secondary bacterial infection from the blood work they took, so they are giving her antibiotics as well, now.

Most people are scared of ICU, but Brian and I are almost relieved to be here. They remember us, love her, and take wonderful care of her. It that doesn't work then we'll bribe them with some sweet treats that you all have been literally leaving on our doorstep. Seriously, we do bribe them. It can't hurt, right? So we will sleep even better tonight knowing that her nurse isn't scurrying around taking care of five other people. Just her and maybe one other kid. Don't think we'll be in ICU longer than a couple of days, but we're all, once again, on Olivia's schedule. And who knows what she has in mind.

PICU here we come---again

Just wanted to let everyone know that Olivia and still in the hospital and actually this morning she was transfered down to ICU. Lets all visit our third-grade selves and relive a science lesson: Olivia is technically breathing in oxygen good enough, but not exhaling enough carbon dioxide. This is part of the reason why she has been so sleepy (the constant containment of the carbon dioxide in the lungs). Also, the more co2 she keeps in her lungs when she exhales the less oxygen she is getting. So, they are putting her back on her bipap machine today. If she was already on it we could have just used it on the main floor, but since they are going to initiate use again, we have to go to ICU for that.

Her heart rate is still pretty high, but its how her system is dealing with the virus so since her blood pressure is still good they won't give her anything to slow the heart rate down. She is constipated and her tummy is firm and distended, but she has pooped a little bit, so hopefully that will get better too. This is a nasty, nasty virus and we, as always, appreciate your prayers.

As always in ICU we will not be able to use our phones on the floor. There is a computer in the waiting room to update, so we can do that, but it might be difficult to get a hold of us. I don't think she will be in ICU long, just enough to stabilize the bipap, but we will see.

A Brief Daddy Interlude

So, here is the update...Olivia is still dealing with respiratory issues due to her virus so not much has changed since the last update -- still lots of breathing treatments and suctioning. What is new is a small amount of swelling due to fluid, so they are giving her some lasix to get rid of some of that. Also, her heart rate is still high compared to what her base line is, which is a cause for concern. She had an echo done this afternoon which revealed that her right ventricle is enlarged and not "squeezing" as well as it should, while her left ventricle is a bit compressed, but working pretty well. We are pretty sure that her heart is working so hard because it is trying to compensate for the lack of effort from the right side. They are hoping that the underlying cause for the heart issues is the virus, so they are aggressively treating her lungs to help her get over that. The picture is still muddy right now but when we get to the end of the virus we hope to have a clearer picture of what is going on.

At this very moment the nurses are suctioning her again, but for the first time in days she is protesting. She just slammed her fist on the bed and I am pretty sure she wants to punch our sweet nurse. I never thought frustrated baby could sound so amazing!

We still aren't sure what the next little bit will bring, but we are trusting that the Lord to be everything for Livi that none of us can be for her. Difficult times like these bring us to the end of ourselves and face to face with what should be obvious: We are not God. In accepting this we have the patience to wait on the Lord to reveal himself to us in our trials. Relinquishing control is liberating and allows us to take our rightful place as dependent children in the hands of a sovereign, loving, and powerful Father who is working all things out for his glory and our good. On that note, I will close with a quote shared with me by one of our dear friends here in KC:

"Whatever your circumstances, however difficult they may be, the truth is that they are ordained by God for you as a part of his overall plan for your life. God does nothing, or allows nothing without a purpose. And his purposes, however mysterious and inscrutable they may be to us, are always for his glory and our ultimate good." - Jerry Bridges, Respectable Sins

Thanks for your prayers. We'll post more soon.

...and we're back

...in the hospital that is. After the first trip to the ER we came home hoping that we could evade the usually eventual second trip and stay, but turns out that 24hrs later we could not. Livi has another upper respiratory infection. I guess I figured this wouldn't be such an issue now that she didn't have oxygen needs, but we were wrong. She is on oxygen now at the hospital and had a few fever spikes, though less scary and high as they were this spring. This is a short note because I have had about 4hrs of sleep the past 48hrs (both trips to the ER at about 4am and no sleep before then). Brian is out of town, but my mom had already planned to be here. Boy am I glad she came. Livi will be fine, but its a virus and we are planning for the usual 5ish days or so. Hopefully the worst is over--this morning was pretty rough.

We expect her to recover fully and not need any oxygen again when she comes home. I guess no one knows for sure, but thats everyone's best guess. Thanks for the prayers!

Stander and therapy pics

Look, I know they are a long time coming. I will explain why in the next post, but for now just enjoy this beautiful face. Uhh, I mean...in this picture they have Livi walking with a little lawn mower. She likes to try walking, but keeping her hands on that thing really pisses her off. Guess you can see that.

Standing up with a little bit of support and playing with a toy at the same time!

The stander. It looks like she is going rollerblading or something. She is wearing the DAFOs in this picture, but I realize you can't really see them, so I will get a close up next time. This stander also has a tray that hooks on so she can play, but she decided that day to watch TV instead.

Rerouting

First of all, if this post seems scattered it will be because Livi and I are typing it together on an office chair that rolls. All kinds of mess can happen...

So, now that the big goals are out of the way (some of them) for Livi's health care, Brian and I are faced with some decisions to make. Over the past week we have been trying to streamline her therapy since we're kicking that up a notch in frequency and thinking about her long term care. Please pray for us as are given the ability to really make decision that affect her health care for the first time. She will be going to both physical therapy and occupational therapy once a week, we are still getting vision teaching once a week, and will be working on some speech during that time as well. In doing the best we can to get her moving more, First Steps has bought both her new ankle prosthetics (dafos) and a new stander that costs the same as a down payment on a new car. It is amazing and better than we deserve. Thank you, First Steps...and, its pink. What more could a girl ask for?

Please continue to pray for both Brian and I in effectively processing the miscarriage. We had a wake up call yesterday when I went in for an endoscopy. After I signed all the paperwork and had my IV put in they informed me we could not have the procedure done because my urine test showed that I was pregnant still. It is everyone's best (and almost only) guess that this is not a new pregnancy, but hormones still hanging around from the miscarriage three weeks ago. I will have another test in two weeks to confirm, but the news was difficult to hear---that it was still affecting my body, and helped Brian to see that he had not fully processed the miscarriage--which, I will say, I think is pretty normal since the man does not actually carry the baby. Now it is a funny story. Yesterday it was seriously disturbing.

We will be traveling to Lake of the Ozarks this weekend for a conference, so we should have some great pics next week. Tried to get some from this week up, but failed. Will do it soon.

Pics from our fun fall weekend!

It turned out be the most gorgeous weekend ever and we took advantage of it. Friday afternoon we drug Livi out to the zoo, and though she slept part of the time, Brian and I had a fantastic time walking and hanging out. The animals were ok too :) Especially the new polar bear exhibit, which I will have to say is actually pretty cool.

(FYI: this is the polar bear swimming laps)

Saturday morning we went to the City Market and though it was pretty cool outside, it was sunny and wonderful. Fall is so idyllic and we did lots of the quintessential fall things...including watching the expected but still heartbreaking loss of Arkansas to Alabama Saturday afternoon. A thanks and shout out goes to Tabetha for making and sending this stink'n adorable bow Livi is wearing on game day. Thanks, girl!

Enjoy the pics.

Hello again, Jack

So, am I the only one that didn't know Jack Johnson did a children's CD? Well, if I'm not, here it is...

You can get it almost anywhere, apparently. And I definitely plan to get it. This way Olivia and I both get our way while we are making dinner. I am constantly listening to Jack Johnson and now Olivia can enjoy it more as well while she is playing. The songs are really cute and interesting. Not too "kiddie" not to be entertaining for parents too.

Woo Pig!

What a great week! Olivia had several wonderful days in a row with no or very few seizures and lots of smiles. Brian had a VERY hectic week, but since I am feeling much better I could keep myself entertained for the better part of the week.

On Monday Livi had therapy at the hospital and she did great! She loves to roll around, but since she already can do that, she was made to stand and try crawling upstairs. Even when I was the prize at the top of the four stairs, there were tears, snot, and slobber coming from all over that girls face, but she did great! I think since her progress is so much faster now, we will be moving therapy at the hospital to once a week. Next week she will also be getting a feeding evaluation in addition to physical therapy to see if we can start feeding her some yet.

On one of Brian's late working nights Livi and I read lots of book to calm down before bedtime. I knew it was a bad idea, but we read this book anyway...

I think my first encounter with this book must have been through that scholastic book club in elementary school. I remember it being kind of sad then. WAY, WAY, WAY sadder when you're a mom and you have some experience under your belt. This time I was the one with tears, and snot, and slobber. Olivia just kept looking at me like, "is that what the book says to do?"

At the risk of making most of you despise me, I become someone else on Saturdays in the fall--college football crazy lady. Especially yesterday, when my team played on TV--and won! We may be Kansas City residents, but we will always be Razorback fans in our hearts. If you don't want to be severely disappointed with my conduct around my child, I suggest you skip our house on Saturdays for a while. Also, thanks grandpa for supplying the new Hog shirts for Olivia. Yes, shirts. The jersey will have its debut next week when we are on TV again, this time tangling with the national champions at our house. Go Hogs!

As a side note, Olivia's nap time also happened to be kickoff time, so we put her to bed right after this picture. Note the excitement on her face.

Also, Saturdays, this one in particular at my parent's house, also happened to be "no makeup Saturday" for me. Enjoy...yeesh!

Reason for the absence

I've been thinking about this post for a while now. Thinking how much I would say. What I would say. I guess I'll tell the whole thing...

On Aug 5 (which happens to be our anniversary) Brian and I found out that we were pregnant with our second baby. We were excited, but apprehensive. Unlike our pregnancy with Olivia, we have recently known several families who have miscarried and so we were careful about telling people for a few weeks. I was very sick with fatigue and nausea (thats actually why I went to the doctor, not expecting that we were--expecting) and could hardly get off the couch or out of the bathroom to take care of Olivia. We took this as a good sign, that my hormones were crazy. About a week and half ago I went in for a check up and found out that we were over nine weeks pregnant and there was a heartbeat on the sonogram. My doctor said now our chance of miscarriage was 3%. We were ecstatic. The next day I went to the imaging center to get a specific due date and not only was there no heartbeat, but the chest cavity was filled with fluid. The baby had not made it.

Being the day before a long weekend made things difficult. My doctor called while we were at the center and gave us our options...wait to see if my body would miscarry on its own, initiate the miscarriage with drugs, or a dnc. The drugs were supposed to have a high rate of success so I chose the medicine, but would not take it until the week since my family had already planned to be in all weekend. After a great weekend with my family Tuesday came and all of the realities of the previous week with it. I was physically unable to take the pills Tuesday--it just didn't sit well with me. Finally Wednesday I took the medicine and started to miscarry a few hours later. I went in for a sonogram a few days later and they confirmed that I had passed all of the tissue.

Since Wednesday I have spent almost all day on the couch. It was physically more crippling than actually giving birth in the long run. I am still recovering physically.

Emotionally Brian and I are doing mostly well. Of course we were devastated, especially considering the first sonogram. We did not understand--still do not understand what happened or what God has in store for our family. But if anything, the past year and a half has taught us so much about His sovereignty and our need for patience. We have spent the last week and a half celebrating the family we have--eachother and our darling little girl. We have already been given so much and are relishing in the wonderful weather and the time we have together.

We will appreciate any prayers. It is still difficult for me to take care of Olivia while Brian is gone at work and I cannot ask him to stay home any longer. Olivia is doing wonderfully--starting to kick to crawl and can now hold herself up on all fours--balance being a bit of an issue, but we'll get there. Brian will be getting busier and busier for the fall in the next few weeks. His Bible study at UMKC starts next week and we would LOVE for that to go well. Promise, promise, promise I will post more pictures of the fam, especially Olivia soon and we will be posting more often now. Thanks for the brief break.

Rolling and rolling and rolling....

Thats whats been going on at our house. Olivia LOVES to roll over now and spends all of her time doing that...on the floor, when you're holding her, in her chair...(this makes mommy a little nervous)

The rolling and trying to creep takes so much energy she is taking some very good naps and sleeping 12 hrs at night (YAY!) We'll have more pictures after this weekend with my family who will be in town.

Spa Day?

Today Olivia and I were privileged enough to spend the day with our cousin Cassidy, who is nine and lives in town with us. After some Wii while Olivia napped and lunch at McDonald's the fun really began. Cassidy gave me a manicure (unprovoked I promise. Definitely not into child labor) and then gave Olivia one too. Mine was slightly more subtle, but Olivia got magenta nail polish for her first mani experience. Cassidy did quite the job for a squirming toddler.

Next we put Olivia in her swimming suit for the first time ever, and since it was cooler and raining, they decided to fill up her new frog pool they bought her in the kitchen just to make sure she could swim today. So sweet!!!

Thanks Aunt Beckie, Uncle Bill, and Cassidy for letting us come over to play. We had such a good time!

On a side note, just wanted to say that this is our 100th post. Thanks for still pretending to be interested!!!

video from grandma's camera

Olivia was really tired from church at lunch, but still managed to give us some entertainment. Thanks for sending me the video, mom!

Shame on me...

I have absolutely no good explanation for my absence, except that finding time to update the blog at the hospital is easier than trying to do it at home where there are many other things that need to be done.

We came home last Monday (yes, thats right, almost a week ago). The reason I have no time is because this kid at my house is new to us. Almost no seizures, sometimes one, at the most two a day, excessive wakefulness, increased attention, better control and use of especially hands and arms...I don't really feel like there is a way to explain how different Olivia is since the surgery. Medically, it doesn't make much sense. She was supposed to have more energy and get off the oxygen--which we have done as well, yet more energy doesn't begin to touch the changes in my child in the past two weeks. She is honestly herself finally come to life. I truly believe it solely the work of God.

We are so blessed and happy to have her at home and doing so well. We will post pictures soon, but my promises seem to be pretty empty lately.

Thanks for your prayers. We truly believe they made a huge difference.

...and we're back...

I know its late notice, but we had to come back to the hospital via the ER early yesterday morning--about 3am. The long and short of it is that Olivia has pneumonia, which really didn't surprise them any. They are giving her good doses of antibiotics and checking her chest x-ray every morning. She is doing well besides that--being funny and playing games and such. I don't know how long we'll be here, but probably at best another few days. Sorry for the late notice.

Four Years

What, two posts in one day? Thats right, people. Mostly they are dedicated to my beautiful daughter, and rightly so. But this post is to celebrate my incredible husband and our now four years of marriage today!

Brian: I love you more than I did on our wedding--more than even yesterday. You are the love of my life, my partner, my support and my inspiration. You are the person I want to be and you help me realize I am glad for who I am. We have a marvelous family together, but it started with you and me and today that is what we will celebrate.

Home Sweet Home

We got home yesterday around noon and Olivia is doing excellently. She seems to have more energy than before the surgery and is awake more. The pain doesn't seem to be bothering her too much-- she hasn't been on anything for pain more than ibuprofen for the last three days. She is still on just the littlest pinch of oxygen, which we may eventually get rid of, but we can't be sure. The right side of her heart is still enlarged which could be still recovering from the surgery. We will know for sure when we do a repeat echo in a few weeks. Either way, she can be off the oxygen for 45min-1hr and still do really well, so if we go outside to play or something like that we can take her off the oxygen. She is supposed to be working on taking her nap now, but is finding it difficult with all of her renewed energy. Here are some pics from the last week

This is when she was still vented the day after surgery--Thursday.

This is from Sunday-the day after extubation. Some kind of goofy grin...

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This is yesterday, waiting to go home and resting with daddy.