Catching up with the Keys

Cha-cha-cha-cha-changes

2012-02-14T12:10:00.001-06:00

Yesterday, for the first time in a month, we got to see Livi in a "regular room"--she is officially OUT of ICU! I caught her after her physical therapy and her breathing treatment, so she was awake for a bit, then pretty tired, but beautiful nonetheless.

Anyone is able to go visit her now without checking with us, so please understand this as a formal invitation. I can't be up there too much, so if you are in town and want to say "hi" we would love it and I'm sure she would too. They'll tell you where she is staying at the security desk. We gotta have SOME privacy- puhlease!

Also, on the most bitterly cold day of the year so far, friends assembled, once again, to work on the porch/ramp. Framing was the word of the day.

I really felt beside myself more than usual last Saturday when the boys came to work. I realized that even though they knew just how sick Olivia was, they continued to show up and build something she might never get to use. When Brian expressed our gratefulness for their perseverance our dear friend said "we're just working like we're praying". I guess thats all that needed to be said. We have the best friends in the world--I really believe that.

Also, thanks to everyone for praying/giving for the ramp project. I believe that we have raised enough to complete all the projects on the budget. Honestly, when the total amount of $10,000 was first expressed to me as the budget I doubted that it would ever happen. The Lord is continually breaking me of my pessimism. I hope I'm learning my lesson. But don't worry, we're not done hitting you up for money. The CCVI Trolley Run (Livi's preschool's annual and main fundraiser) is coming up, and you better believe we plan to make you all join us! Its just 4 miles. No biggie. Details coming.

Perspective

2012-02-11T10:53:00.001-06:00

One of Brian's least favorite things about me is my tendency at certain times to be a little dramatic. I know, right? You can't imagine that. Rest assured, this is not one of those times.

So, the last day or so, or really the last few weeks, I've been trying to figure out how I would explain the emotions our family has been going through. I allow myself plenty of tears and emotions, but mostly in the privacy of my own home and not for the entire Internet or hospital to see. I'm not sure I need to just dump our entire thought processes over the blog, but I did want to make sure you understand something: we were very close to losing our little girl to this illness. I know it sounds more sterile when all I relay is percentages of oxygen and vent settings and feeding regimens and x-ray images. I have wanted to explain this for a while, but somehow while Livi was so dangerously sick seemed like an inopportune time. No one said "she might die" but we all knew that was a possibility and that fact has been highlighted even more now that she seems to be getting well.

When the ICU doctors walk by, lean in your kids room and smile two or three times an hour after she is off the ventilator, then offer to take a picture of you holding her with your phone (even though you're not supposed to have your phone on), you know something must have been up. The doctors are, of course, very kind; however, ICU doctors are kind of a whole different breed--not emotionless, but very composed. They have to be. Their joy at seeing Olivia well seems that it comes with a strand of surprise.

Also, I was informed by wound care that the pressure sore that has been on her back ( I don't remember if I've told you about that) is probably something other than a pressure sore. Wound care nurses from outside of the hospital were consulted about the sore and it seems that it is probably actually something called Kennedy Terminal Ulcer. Stop. Don't do it. I know you're going to want to google it. Don't. Its super depressing. Suffice it to say that when the body gets so sick it starts shutting down "less important" organ systems. Like the skin (also Livi's stomach had slowed way down and stopped doing its job). The most immediate organ systems need the energy, so certain things in the body kind of stand back. The ulcer, they think, was the skin organ beginning to turn off. The terminal part actually means that-- most patients end up dying--not FROM the ulcer, but what the ulcer says about the body's sickness. Could they be wrong? Of course. But Kennedy, the nurse who it is named for, was also consulted and sent a picture of it and thinks that probably what was going on.

All this, plus so many other small things make it easier for me to tell you thanks. I know that so many of you were praying. Listen: your prayers mattered. They are still mattering. The food, babysitting, cards, the 6 men standing outside my house in sub-zero weather putting the first beam for Livi's new ramp down...it all matters, significantly to us. There were days when I was so beside myself with the possibility of what might happen to our family that I could not use words to pray, but it was ok, because I know so many of you were.

We thank you, and at the same time give acknowledgement that total control belongs to the Lord. Not just when good things happen and she gets well, but when things we don't want to happen come to fruition as well. Apparently Olivia's job here is not done, and we are so grateful for that. We get to spend more time with her.

We would, course, covet your continued prayers. We are finding out more everyday how being this sick has ravaged Livi's body. She is still not moving a ton and will have trouble building muscle back up and learning to use her body again. I am sure we still do not know the full extent of the damage. Will send you more pictures when we see her awake more. Thanks. Thanks. Thanks.

Guess what we did today?

2012-02-09T22:11:00.000-06:00

Thats right. My girl got off the ventilator. As you can see in the first picture, she still has some sedation on board, hence the google eyes and the silly grin--nevertheless, such a beautiful sight. She will be in ICU another day or a few, who knows. The doc says she will also be in the hospital for Valentines Day, but hopefully in a regular room on a regular floor. Thanks for all your prayers. I'm sure we will be posting plenty of pretty pictures and happy updates often.

4 weeks and counting

2012-02-06T11:00:00.000-06:00

Livi has been hospitalized for 4 weeks now. We are past being sad about it and working our way through the fatigue. Luckily, we have amazing friends and family who make our otherwise impossible life not only do-able, but really enjoyable. If I say thank you again, is that overdoing it?

The beginning of last week was a difficult time for me. After being extubated and reintubated on Saturday, I did not expect her to be doing worse on the ventilator by Monday. As previously explained, that was due to the collapsing of some of the smaller sacks of the lungs. Even still, Monday and Tuesday I was concerned that she was actually going to get well. She looked more tired and exhausted than before and was not fussing around as much (something I usually take as a sign of her personality shining through). Wednesday brought some relief in this area. When I went to see Livi she was fussing around and opened her eyes and turned her head to my voice. With all the sedation her eyes were still pretty googly, so I don't actually know if she could "see" me, but she knows I was there. Since Wednesday things have seemed mostly better. Of course, most days things go up and down and you end up about where you started, but it seems the last few days that she is making a run for it again.

Her daily x-rays show that her lungs are popping back open where they had collapsed...she is getting a little food again (last week her stomach wouldn't properly digest any food)...she is getting fewer sedation meds...they are turning down settings on her ventilator daily. She has had two fevers the last two days, but we're pretty sure its from a UTI (waiting for cultures to finish growing out). There was a question of her having a pretty concerning stomach disease that affects proper digestion, but they did a test yesterday morning that shows her stomach is working well-- thank you, God. This illness is SO out of the ordinary for us that I asked a nurse I had grown to trust how concerned the medical team was. She assured me that kids with chronic lung problems have this much trouble reasonably often--I just hope this doesn't turn into our normal.

All in all things seem to be looking up. Maybe we'll have some good new for you in a couple of days.

Updates all around

2012-02-01T16:27:00.000-06:00

So, since I don't actually post as much as I mean to, this post will cover all the high points since Sunday. Ready?

Olivia is doing about the same, maybe a smidge better. Its so hard to say because she's up and down depending on the hour. I talked with the doc this morning and he said that its not just her, that several kids with this human metapneumovirus that she has have been taking an extra long time to get rid of it. That is both comforting and not. The past few days for me have been pretty emotional and I am playing out scenarios in my head. This is both helpful and not helpful, but today has seemed better--for me and her. They are moving to turn things down again, very slowly, and hopefully this time it will stick. The reason for the "worsening" after Saturday, we think, is due to some collapsing of the smaller sacks of the lung. Its an issue she has often when she has upper respiratory infections, but being already sick and on the ventilator it has set her back a few days. We don't have any new pictures of her. Unfortunately she looks about the same as she did a few weeks ago--just sporting new barrettes now--orange flowers.

Gabs is insane. We absolutely love her and she is proving to be a wild woman already. She is 7 weeks old today. Can you believe it? So, I get this text Monday night. Brian had been letting her cry for a bit in her bed, but going upstairs to check on her. It usually just takes a few minutes of whining now, if that, for her to sleep, but tonight was different. He went up to check on her and found this...

...So this is one of those swaddler blankets, which apparently suck. Admittedly the nightgown is a little big, but really? See the red eyes? When they get their tear ducts working it makes the crying so sad!

Also, we had another work day on the ramp this Saturday. The stone pillars that were on the old porch were dissembled and concrete was poured on the corners of the new porch so they can be re-assembled as part of the new porch. Awesome, but my lazy rear would never go to that much trouble. Apparently, under our dirt lies a quarry, which, fortunately for the boys, meant they would have to rent a jackhammer make a hole big enough for the pillars. They were really torn up about it too.

3 weeks in the hospital, seriously?

2012-01-29T09:27:00.000-06:00

Yesterday was a tough day for our family. After finding out in the morning that they were planning to take Olivia's breathing tube out I made arrangements to be at the hospital the better part of the afternoon. Once before, when Olivia was in NICU, they had to intubate her after surgery. Finally, the day we hoped for--the day the wanted to take it out came. That day 2 hours after they took out the tube they had to replace it--she just wasn't going to do it on her own yet. (Actually, we got a call at 3am that next morning saying she took the tube out herself--something that happens relatively often in NICU and that she was doing great without it so they didn't replace it.) Unfortunately, it went about the same yesterday. Though I was prepared for Olivia to be re-intubated and emotionally ready to handle the situation I was sad to see it happen.

This is how it went: As soon as I got to the hospital they were talking about going ahead to pull the tube. They had been weaning her sedatives so she was going to be awake enough to do some work on her own. She had been breathing on a CPAP setting on the ventilator that shows them her lungs are ready to at least be on a CPAP mask if not her regular little cannula, or no oxygen at all. Right after they pulled the tube she looked great--breathing great without any help. Here is where the problem lies: not only the lungs have to be ready, but the throat. Her little throat was so sore from having the tube down it for so long that it restricted with inflammation after they took it out. Livi's lungs are ready to breath on their own, but her throat was too irritated to move the air down to the lungs well. Now she is on steroids so that when they are ready to try again, her throat should stay nice and open for her. It is protocol to wait at least 48 hours before trying again--its such a taxing thing for her. At the earliest they will try again tomorrow, though I imagine they might wait longer to make sure she is ready this time. She is doing well so far and her settings on the ventilator are still low.

We know she will get off the ventilator sometime relatively soon, we know she will come home to us after a while, but fatigue is setting in. We miss her more every day. Please continue praying for our family. We have great support and could not make it through this without so many people who love our family, but we miss our girl horribly. We are praying for comfort and peace for Livi all the time-- something we cannot even give to her, but the kind the Lord provides. It becomes more apparent everyday how little we can help her or even put her at ease. We are trying to rely solely on God (not family or friends or each other or the doctors) to provide the things that Olivia needs or the things we desire for her--not only when she is in the hospital, but all the time. Lord, help us.

Remember the ramp?

2012-01-26T12:26:00.000-06:00

Well, its coming. In case you missed it, here is the link to that post: original ramp post. For those of you who want a short cut: our awesome friends who work in construction have offered to raise $10,000 for us to tear down our old porch and build a new one with a wheelchair ramp attached so that getting Olivia in and out of the house is do-able. Please, please, please go back up and read the older ramp post. It contains all the information about the budget, how this project came to be, and pictures of what our porch looked like and the plan for the new porch and ramp. All VERY important information. There are a few things to update you on concerning this project, so here we go:

1. First of all, not really a ramp update, but an Olivia update. Things are about the same-- moving forward very slowly. She is still on the ventilator in ICU, but they are getting rid of meds and turning her settings down everyday, so we don't know when she will be either out of PICU or at home, but we are praying things continue to progress.

2. The work on the ramp HAS STARTED!!! We couldn't believe it, but last Saturday, 15 of our friends showed up in the bitter cold (I think the high was 30 degrees) to finish the first phase of the ramp project--demolition. After our porch was no more, they poured the concrete footings for the new porch. From what I understand, there will be 3 or 4 more work days before the entire project will be finished.

3. We have enough money raised to finish a large part of the project, but we don't have all $10,000. With the incredible generosity of so many people, we have raised $8,000 of the budget. If you or someone you know is interested in helping us raise the last of the $2,000, please read this letter from those responsible for the project to understand how to donate: ramp letter.

Thanks to everyone who is helping to make this happen for our family. Brian and I are driven to tears to think that people would be moved to help us in such a huge and practical way. With that said, a special thanks to the people in these photos, who froze their rears off last Saturday.

It even looks cold in the pictures, doesn't it?

Moving in the right direction

2012-01-23T08:28:00.000-06:00

Sorry for the absence between posts on Olivia-- its hard to write something meaningful when there isn't any real change to update. But, now there is!!!

After trying the second time, Olivia was able to stay off the oscillating ventilator and be switched to the basic ventilator. They have been able to keep turning some of her settings on the ventilator down (slowly, but surely). What are these mysterious settings I keep talking about? For those of you who care, they are the amount of pressure she gets from the machine to breath and the amount of oxygen she gets from the machine. It also controls her respiratory rate amongst some other things. After being taken off the oscillator they were also able to take her completely off the blood pressure medication they were having to give her as well as the paralytic. She is requiring more sedation now that they aren't giving her the paralytic because she is moving some (though she is still asleep) and that can throw the pressures off on the machine if she moves too much.

All these things are a wonderful move forward, but after an honest conversation with the doctor last night, while Olivia is expected to fully recover, the pneumonia is still very apparent on her chest x-ray and her stay will still be pretty significant from here on out in order to clear out her lungs.

Next? A post on the ramp. SO excited to let you all know whats happening!

Really slow and reasonably steady

2012-01-19T10:43:00.000-06:00

Thats how things have been with Olivia the past two days. We have finally seen her stop getting worse and now they are weaning some of the settings on her oscillating ventilator. The hope is in the next day or two she will be well enough to move to the other ventilator. From there the progression is: getting off of the ventilator onto some kind of additional oxygen, then moved to a regular floor, then getting off the additional oxygen, then home. The timing is anyone's guess-- including the dr.'s. We not only have to allow time for her to be able to breath on her own again, but to eat again (she is getting fat and sugar through her IV), have regular bowel movements, and get her off all those sedatives. Thats what I mean by really slow. We will not be home with Livi for quite some time now, but are SO encouraged by her progress, small though it may be. Thanks so much for your prayers and support. We will be needy and ask you continue those prayers. We are still not even close to out of the woods.

Meanwhile, we are still trying to have some kind of semblance of a life at home. Last week during the 60 degree weather I took Gabby on her very first walk. It was especially important because my best friend, Maggie, just had her daughter Abby (yes I know, Gabby and Abby) two weeks after Gabs was born. Here they are together bundled up in their matching hats my incredible mother made for them. Thanks, mom!

Feeling hopeful this morning

2012-01-17T10:41:00.000-06:00

**I have attached pictures of Olivia at the bottom of this post. In those pictures she is on the ventilator and hooked up to a lot of tubes. If that is difficult for you to see or have small children looking over your shoulder you may want to take this into consideration.**

This morning Brian and I are feeling more hopeful about Olivia's recovery. The last few days she hasn't really seemed to get better at all, and in fact, often seems that she is getting worse. We know that because of the viruses we have to "ride the illness out" (which means they can't give her medicine to "fix it") but its hard to stay hopeful while waiting when your kid in having a machine breathe for her. Since she was put on the ventilator Olivia's settings on the machine have been higher than the doctors would like (which means she needs more assistance from the machine than generally they are happy with). This morning Brian just called and Olivia's settings are lower and now basically in what they consider the "optimal zone". Honestly, she will probably yo-yo up from there again and come back down several times, but knowing she can reach a lower setting is giving us a little hope this morning for a full recovery. Thank you for your kind words and especially your prayers. We are definitely not out of the woods yet and still covet those prayers, but at least we have something concrete to point to as progress--small though it may be.

Even though Olivia is not only purposely paralyzed by this medication, but also sleeping all the time, we think its important to continue to talk to her and have her listen to music. Brian and I are excited that the Child Life department of the hospital has offered to record us reading books to Olivia for the nurses to play while we cannot be at the hospital. That way we can try to be present with her even when we can't be. So thoughtful.

Below are some pictures Brian took of Olivia yesterday. The nurses are so sweet to make her look like a healthy little girl by painting her nails and putting her hair up with ribbons. I told Brian on the inside Olivia is singing "You make me feel like a natural woman"...not sure he knew what to do with that. Here are the pics

Also, Olivia CAN have visitors in ICU if anyone is interested in coming-- we love having company. However, because it is intensive care, either Brian or I have to be present to escort you back to the room. If you are interested in visiting just let one of us know and we can let you know when someone will be in her room so you could come back.

For the curious types--the tape around her mouth keeps the breathing tube from getting knocked around when they move her. They change it out everyday and clean around it. I know it looks weird if you've never seen it before. The patch on her forehead measures the oxygen in her tissues--she has one on her back as well. All those clear tubes from her mouth to the left side of the picture hook up to the ventilator and the small wire tubes around her head go from the medication pumps into a line in her neck (pretty much a long-lasting more stable IV). I may be partial, but even really sick, my girl looks great!

I got me some fiesty girls

2012-01-16T10:00:00.000-06:00

So, update on Livi first. She is still stable and doing relatively well, though still "critical". Saturday night on our way to the hospital the nurse called and explained she wasn't doing as well that evening as the previous day as far as getting oxygen through her lungs, so they were putting her on a different ventilator. They have since switched her over to a ventilator that works differently (for those of you with experience, the oscillating ventilator) and she seems to be stabilizing on this machine better. To put her on that machine mostly they give kids a paralytic on a drip because it kind of shakes their bodies gently back and forth--hence oscillating. She is alseep and unable to move now because of the medication, which is nice, because I really don't want her remembering any of this when she gets better. Because she is out of it all the time, Brian and I are cutting back (a little bit) our time at her bedside. She will need us there more when she is awake, so we are trying to rest and be gone more, but it seems like the most unnatural thing in the world to leave your kid on a machine at the end of the day and try to do "normal" things. So, to recap, she is not really doing better in the sense that she has improved, but she has finally hit a plateau and is not seeming to get "worse" anymore, so we are pleased. I promise we will post a pic of this soon, but she is looking SO cute while she is knocked out: the nurses have put pigtails in her hair with ribbons (that get changed out every day) and multicolored barrettes AND hot pink nails. Until we get that pick up, you can gaze on this beauty from before the ventilator last week. This is what we like to call "gowning up" or "keeping your other little one from being admitted to the hospital too"

And Gabs, we have not forgotten you. Happy one month birthday last Saturday! I didn't put you in any cute onesies or have your picture taken by a professional. You're really lucky to be diapered and dressed lately, but don't feel swept under the rug by your sister's drama, we absolutely ADORE you too! You are hilarious and very definitive about your feelings. Your expressions are finding a wider scope but we can't always show people because you refuse to smile when you see the camera. You're still "small" but long and lean and I am so proud of the one fat roll you have in your mid-thigh. You're a great sleeper and an even better eater. You're starting to like hanging out with your parents more, which will disappear soon, so we're hanging onto that hard. We love you, doll. You are such a delight to us! Here are some pictures this week of "not" smiling when the camera comes out

Finally, a decent night

2012-01-14T11:21:00.000-06:00

Olivia had a much better night last night. No late night phone calls. No room full of medical professionals frantically rushing around to make sure she is stable. For that we are abundantly thankful. In other news, it is fun to see other people get to know the fighter that my kid is. Any time someone moves her to fix tubing, diaper, or anything else close to her, she is apparently letting them know that she is tired of laying in this bed with this tube down her throat. As a result, they need more meds to sedate her because she turns into wild woman, grabbing a tubing, trying to get out of the bed, etc.

Her chest x-ray still looks a little wet, so they are going to give her lasix today to try to pull some more fluid off of her. They are also keeping her sedation up so they can avoid the whole "bull-in-the-china-shop" affect. She looks comfortable and for that I am thankful.

I finally got some sleep...a lot of sleep. I got a room here at the hospital and probably got around 10 hrs of sleep last night. Somewhere Kelly is cursing me. I feel much better as a result. Missed being at home in my bed, but I figured with the way the past couple of nights have gone, it was a safer bet to stay here last night and avoid any drives through midtown in the wee hours of the morning.

Overall, while things could be better, we really are thankful for a lot of things. The outpouring of support and prayers for us and our girl has been amazing. THANK YOU for that. We find comfort in the fact that we have a great God who is in control and who promises throughout Scripture that he is with us. In fact, it is beautiful to see him promise that to his people from the beginning. Kelly and I are trying to do the Discipleship Journal reading plan to finish the bible in a year this year. Yesterday, I read in Genesis 31 God promise to Jacob that he would be with him and thought, "How beautiful is it that the God of the universe has promised his people that he would be with them over and over again throughout Scripture?" I mean think about it: the Creator and sustainer of life, the one who holds our very breath in his hands is mindful of us (Psalm 8) and promises to be with us (Hebrews 13:5; Matt. 28:20) and to be a rock and a refuge for us (Psalm 18).

We find rest in him and pray that you do as well.

Another Rough Night

2012-01-13T03:05:00.000-06:00

So, it's almost 3am here. Kelly's dad had the first watch. He called about an hour ago, so I am at CMH now too.

Livi was having quite a bit of difficulty maintaining her sats, so they have now intubated her (which, Grandpa Don says she fought all the way. Typical for my kid. She is a fighter.). They are also placing a central line to monitor and to have better access in case they need to give her some meds (at times, peripheral IVs are about as stable as a house of cards in the wind).

I don't know much else to say. We'll keep you posted as we know more.

Rough Night

2012-01-12T09:25:00.001-06:00

So, many of you know this already, but we had a rough night last night.

I got home from work around 8:30pm and called Livi's nurse...she had a fever of 104.1. The weather was getting bad, so I stayed in and prayed.

I called again about 10:30pm...she had a fever of 103.3 and her breathing was increasingly labored. We asked them to call us if things got worse in any way.

About an hour later, her nurse calls...Livi has increased oxygen needs, could possibly need to have a tube placed to help with that if she gets worse. Her chest X-Ray looks bad. They are moving her to PICU. Then they say: "It would probably be good if someone comes to sit with her."

(In our heads: What does that mean sit with her? Be there for comfort "sit with her" or be there for the last time "sit with her?")

I got out in the snow and arrived at CMH around midnight. Doctor says she doesn't look bad. She looks like she will rest well and they won't need to place a breathing tube...and then I exhale. A couple of brothers that I love a ton arrived to pray for Livi and our family and just sit with us.

Rabbit trail: If you don't already know this, we are a part of the most beautiful expression of community that we could imagine. People are our friends here, but they function as our family. What Paul says in 1 Corinthians 12:26 ("If one member suffers, all suffer together...) really happens here. The brothers that came last night did all the support work that you could imagine last night...prayed for me, prayed for my daughter, prayed for Kelly and Gabby who were at home worrying and still awake. Then they went beyond that and called many of the people closest to us to have them check in on Kelly while I was away. It almost brings me to tears to think that if I had asked them to, they probably would have stayed here all night...end of rabbit trail.

It is 9:15am here. Livi slept well last night as did I in this amazing, plastic recliner that doesn't really recline. She stirred long enough to hold hands and know I am here. At least she knows that. I hope it brings her as much comfort as it does me.

We are thankful for all of you and covet your prayers. We will keep you updated as much as we can. Many have texted, called, etc. If we haven't responded to you, I apologize. We have limited emotional bandwidth today, so keep up on here, facebook, or twitter.

Here is what we are clinging to and praying since last night. I pray that you find hope and rest in this God as we have...

Psalm 121

[1] I lift up my eyes to the hills.

From where does my help come?

[2] My help comes from the LORD,

who made heaven and earth.

[3] He will not let your foot be moved;

he who keeps you will not slumber.

[4] Behold, he who keeps Israel

will neither slumber nor sleep.

[5] The LORD is your keeper;

the LORD is your shade on your right hand.

[6] The sun shall not strike you by day,

nor the moon by night.

[7] The LORD will keep you from all evil;

he will keep your life.

[8] The LORD will keep

your going out and your coming in

from this time forth and forevermore.

A few days behind

2012-01-11T20:16:00.000-06:00

Warning: no cute pictures in this post.

Livi is back in the hospital. We had to take her Sunday afternoon. She ended up having three different respiratory viruses and pneumonia. She is still having fevers as of this afternoon, so she is still contagious. I have been trying to make it up there at least once a day in between feeding Gabby and then coming home to shower and change clothes to make sure she doesn't get anything. I have been leaning on some fabulous friends to babysit and they have been so generous. Brian is as awesome as ever and trying to wear a billion hats this week-- he is working, taking care of Gabs and I, and trying to be at the hospital for Olivia as often as possible. This whole two kids and one in the hospital thing is horrible. We miss Olivia so much. She isn't as "scary" sick as what we thought Sunday evening, but its a very uncomfortable sickness and will take some time to get over. Don't ask me how long--we never know. Everyone knows Livi makes her own rules. We would appreciate the prayers and thanks to everyone who is signed up to bring us food this month for the birth of our second girl: your generosity is turning out to be even more appreciated than we thought, unfortunately.

I made it!

2012-01-06T10:32:00.000-06:00

I did. I made it through the first week of having both girls at home by myself. To be fair, Brian can be flexible most times with work when I need him to be. Like this week, when we played musical babies just so I could get Livi and her incredible mound of crap she needs into preschool. We're working on a better system, but I am grateful for my husband and musical babies.

Interestingly enough, I didn't go crazy, I got some (SOME) housework done, had a great week, AND it went SO INCREDIBLY QUICKLY! Wasn't it just Monday?

After sitting up to hold Gabby to sleep pretty much every night since she's been home, Monday we decided enough was enough. Let the crying commence in her own bed. Am I a bad mom? Maybe. But I've got to say, after one night of crying off and on we ALL get great sleep at night and she is in a much better mood during the day from sleeping so soundly. I realize that this is not the norm, and that she will backslide several times into wanting to be held all the time, but for now we are loving it. All four of us.

This picture must have been from the beginning of the week :)

In case you thought I forgot, I didn't: we WILL be posting a update on the ramp project VERY soon.

See, what had happened was...

2011-12-29T19:23:00.000-06:00

So, we were all, surprisingly enough, home for Christmas. Olivia came home from the hospital the afternoon of Christmas Eve and I have to say, I was not very optomistic about how the next few days would go.
I'll explain: when the dr.s had to take Olivia off of all of her food, they also had to take her off any medications that went directly into her stomach, which is all of them. A few they could actually give through her IV, but NONE of the seizure medications she is currently on could be transferred over. Thats why the hospital stay was so bad. Olivia basically underwent withdrawals cold turkey from several habit-forming medications. They could give her an antivonvulsant through her IV that she had been on previously, which is what they decided to do. We spent two months last spring weening her off of this drug because the side effects are terrible. It makes her brain really foggy and makes her motor skills really unorganized. We had no choice, coming home, than to be on this medication and then spend another few months weening off of it again. Thats what we are doing. BUT, I will have to say that Olivia is much more herself than I ever expected. She is a little floppier tone-wise, but is still the independent, opinionated girl we know and love.

And now we have two of them. Getting to know Gabby over the past couple of weeks has been really fun. She is definitely her own person, but both girls are divas.

Gabs will only spit up on clean clothes (either yours or hers--whichever) and honestly, will only poop in a clean diaper. We are going through them like mad crazy. I've never seen anything like it. She literally waits until we put a clean one on her and then two minutes later christens it with poop. Unbelievable. Good thing shes cute.

She's still teeny tiny, but gaining about an ounce a day. She is also the most orally motivated child I've ever seen. She'll eat until she falls asleep and then spits up all the extra. If she is going to be awake for a while then she wants her pacifier too.

Brian has off of work (thankfully) until Monday. I don't know what I would do without him. I have been pretty nervous about taking care of both girls next week, but am feeling better about things as the days wear on. He is even doing hair!

Having two people really does make the outings go A LOT smoother, but I guess I'll have to get used to lugging them both around together by myself.

So, things are busy, but going well on the whole. We are so blessed with a wonderful family and I can't wait to spend more time with these girls!

Our Christmas Miracle

2011-12-26T10:03:00.000-06:00

Details about how everyone is doing coming soon.

Our Bittersweet Week

2011-12-20T11:39:00.001-06:00

WARNING: This is a long post, but I don't feel bad. It has been a long week.
________________

There is no better word to describe the last week than bittersweet.

bittersweet (adj.) - both pleasant and painful or regretful;

pleasure alloyed with pain

This week has been one that has us living in the tension of excitement and sadness. Excitement because we welcomed a new person into our home...Gabrielle Suzanne. She was born at 2:28pm last Wednesday (12/14). She is 20 inches long and weighs a whopping 5 lbs 9 oz. Check her out...

That awkward first photo that she will one day feel embarrassed about

My beautiful wife was a champ

My first time to hold her

Tugger is still not sure what to do with her

I love to just watch her sleep

Resting on my chest after a meal

For those who are interested, the labor went smoothly. Kelly and I were both a little apprehensive due in part to how difficult Olivia'a labor was and all that has followed. Every time Kelly contracted and we lost a good bead on Gabby's heart rate, all we could think was, "Not again, Lord. Not again." In the end, after being induced at around 6 a.m., Kelly actually pushed for a grand total of 1 set of three practice pushes and 2 sets of three pushes and Gabby entered the world....and man does she have a set of pipes! We went home on Friday and began our life as parents of a newborn baby girl the way that most parents do...an experience that is new to us.

What has been fascinating about this whole thing is that while being Olivia's parents has caused us to experience a ton, we had no idea what it would be like to take home a new baby who breastfeeds (which Livi never did), who spits up (which Livi never did...is it too much? I don't know) and who cries when she needs a change or is hungry (which...well you get the picture). I know that all parents worry about their child's breathing when they sleep, but imagine when you have worried many days for the past two years about it possibly being the last time you get to put your girl down. With all that said, we keep telling ourselves, Gabby is not Livi. We are learning to enjoy Gabby differently that we got to with Livi, which keeps us on our toes and with our cameras poised to capture the next moment when she grins in her sleep, has her beautiful eyes open, or roots on me as if I have the right equipment to feed her.

Now to the other news regarding my Little Bear...the bitter part of bittersweet, if you will.

At last update, Livi was still in the hospital and I am writing this now from her room at CMH. Since the last update, they have taken away Livi's food and meds to rest her belly because a CT scan revealed that she had a little air in her intestinal wall which can apparently cause perforation in the intestines. With rest over the past week, it looks like it is resolving itself and that she will be able to resume feeds and meds tomorrow. This week has been hard on multiple fronts, but the hardest part of the past week has been watching Livi come down off of her meds. They didn't have her medicine cocktail available in IV drip so they substituted one med. This has resulted in twitching, irritability, sweats, etc. For the first time in her life, I wasn't able to console her for a few days, which was heartbreaking. She is better today, but I am excited for them to resume feedings, because that means she can have her meds again. Hopefully, we will get things back to normal before too long. We are still not sure if she will be home for Christmas or when she will be able to meet her new sister, but it will hopefully be soon.

We covet your prayers during this time. So many of you have reached out in amazing ways already and for that we thank you. I could update you more on what the Lord has been teaching us during this week, but I will save it for another post. Sorry for the length. I guess a long week demands a long post. :) I will try to help Kelly keep up with it a little more often. To keep up with my Instagram feed, click here. I probably post pictures there daily.

...And the fun continues...

2011-12-13T10:34:00.000-06:00

So, remember a few days ago when my biggest worry was that Livi and I would be in separate hospitals at the same time? Well, that will happen, but that is no longer my biggest concern for this week.

Sunday night Brian and I started to feel not quite right. We were at the hospital and had decided to head home kind of early. Without being too graphic--the episode began for me by vomiting in the parking lot at Children's Mercy (I checked this morning. The rain had washed it away:) We both ran back inside to the bathroom at the hospital, then somehow made it home and proceeded to not keep anything down for 12 straight hours. Needless to say we didn't come up to the hospital to visit Livi yesterday, which was a first for us and totally heartbreaking. But the last thing she or anyone else up here needed was more germs. I started eating real food this morning and am feeling TONS better. So is Brian. I am up at the hospital visiting Livi today, but trying to conserve all my energy for pushing out a baby tomorrow.

Which brings us to my new biggest concern: having the energy and fortitude to give birth 24 hours after having a terrible stomach bug. So, there you go. New prayer request.

Livi is doing about the same as yesterday. They keep trying to feed her and then she just whines in pain and her stomach gets huge and tight again. She is resting now after totally offending us with smell and dirty sheets, but she feels better, so its well worth it.

Again, we have so many people looking out for us that I'm not concerned about either Livi or myself having enough care. Yesterday, when Brian and I couldn't come up to the hospital, we had two extravagantly generous friends come several times to stay with her a bit. We got pictures in text messages and reassurance that she was resting well. There are no words for that kind of comfort for us. Also, my parents will be up tonight to watch over Livi and myself in the next few days. What more could a girl want? As far as I'm concerned, this whole hospital thing is just Livi's last ditch attempt at stealing the spotlight. Its working.

However, we are TOTALLY psyched to meet Gabrielle. Can't wait to update you with those pictures soon. Until then, here are some pictures from the CCVI Holiday Program last Thursday we told you about. If a picture is worth a thousand words, then there is no need for subtitles...

Literally catching up with us

2011-12-11T11:47:00.000-06:00

Every day I think, 'man, I need to blog this' and then another day goes by and more stuff happens and I keep waiting for things to calm down so I don't have a running list of things to tell you. The list has not stopped, but I guess I have to start somewhere.

I'm technically due with Gabby Saturday, but she doesn't seem to be in a hurry to come meet us (it must be something my kids got together and decided on) so, at the risk of me doing past my due date again, instead my dr. decided to go ahead and induce me this Wed, the 14th. We are SO very excited, but then something happened yesterday that threw a wrench in things...

We had to bring Livi back to the hospital. We're still a little unsure as to what the whole deal is, but she had an obstruction in her intestines-- basically she had tons of gas stuck in her gut and it was really hurting her. They've got her on IV fluids, though are now ready to start her on her regular food here in an hour or so because she's passed so much gas and stool and her stomach has now deflated to a normal-ish size. Food is good. She is also on a little bit of oxygen and we don't know if its because she has an upper respiratory infection too or because her inflated gut was taking up so much of her chest cavity that she didn't have tons of room to breath. We'll find out soon enough--the radiologist just did a chest x-ray less than an hour ago, so we'll know soon. She is finally not in pain and resting comfortably.

So, one of our biggest "concerns" looks like it has the possibility to happen: me and Livi being inpatient in two separate hospitals at the same time. Is it the worst thing in the world? No. But definitely not convenient. My hope is that she will be home by Tuesday, but I'm learning that those are the kinds of things I have absolutely no control over and should not spend time worrying about it, just planning for it. Luckily, my parents are totally awesome and are coming into town Tuesday evening 'til at least when Gabs and I get home from the hospital. So, if Livi's in the hospital Wed. then she is and my parents are here to take care of her, and if she's home, then they'll be there to take care of her. Either way, we will both be very well taken care of for sure.

We would really covet your thoughts and prayers the next few days as things wind down--prayers for healing for Livi and health for Gabby, but also just for peace and understanding no matter what circumstances change between now and then--and I'm sure there will be plenty of that.

On a high note, Livi had her first holiday program at school last week and it was adorable! She did great! We have some pictures, but seeing as I'll have plenty of time on my hands the next day or so I'll post those then.

Embracing "the village"

2011-12-05T12:12:00.000-06:00

If you read any special needs family blogs or magazines, they all talk about how it takes "a village" to raise special needs kids. And, lets be honest, it takes a village to raise any child. I knew this early on in our journey with Olivia-- that I couldn't do everything on my own. I didn't have a medical degree, didn't know anything about anticonvulsants, didn't know how to stretch her properly, nothing about assistive technology and the options for communication devices, how to encourage her to look at things that didn't light up, and an endless amount of issues. I knew we would need the village, but honestly, I didn't want it. I, for purely selfish reasons, wanted to be the sole reason Olivia became who she was. It felt natural for her mother to care for all of these needs she had. I think I was jealous. I was afraid of being phased out. I was immature and I think it hindered Olivia's growth. She got all the therapy and treatment early on, but I was insistent on being a nurse and therapist at home, and focused less on being just her mother. Wow, that was harder to even type than I thought it would be--and incredibly shameful. I was too busy try to make her "better" and less focused on just loving her.

Can I just say, though, that the past few months have been the happiest our family has experienced since Olivia's arrival. Yes, in part because she is improving and showing us her funny personality in all kinds of ways. But mostly, because being VERY pregnant with Gabby has shown me that especially when she gets here, I can't be the therapist and the nurse and the mother to two children with the intensity I first wanted to. It would be impossible. And now, instead of being disappointing, that news and realization is freeing for me. I am free to be Olivia's mother.

I'm going to cry again, but we have the most incredible team of dedicated people who love and serve Olivia with such passion--not just for special needs children--but for her. We have friends who have continually surprised us with love and concern, therapists who go, truly, above and beyond to help both Olivia and Brian and I, and preschool teachers who are so intent on teaching her and watching her grow, even though some days are difficult, and family who nurture her and are dedicated to learning about her needs. Will we still "practice" things at home and work on therapy and stretching and switches? Yes, of course. These things make such a difference in Olivia's quality of life and education. But is that my primary job as Olivia's mother? No. And I have to say, I used to think so. Those are options to play and nurture, but that is not all we will do in our house. We will have new experiences, go new places, look at new things, make funny faces at each other, sing songs and laugh. Unfortunately, I'm getting a little late to that game-- Olivia is almost 3. But, health permitting, we will make up for lost time.

So, this weekend we caught up on much needed sleep, snuggled, made faces, and made pancakes amongst therapy and practice walking. And it was delightful.

Also, don't judge the hair. All these pictures were taken in the morning for some reason.

Guest Post...Well Not Really

2011-11-29T16:52:00.001-06:00

It's just me...Brian. I'm not as eloquent or witty as my wife (or good-looking for that matter), but she's letting me take a crack at updating you on what's going here with us.

I have the privilege of letting you know that Olivia is home from the hospital. She is feeling a lot better and we are thankful to resume some sense of normalcy in our daily rhythms. She is also apparently fed up with having to lay in a hospital bed for most of last week. So fed up that upon being placed on the floor (her usual hangout spot in the living room), she decided that it was time to try this rolling over thing again. With a little help from mommy, she was up in a crawling stance in no time and trying with all of her uncoordinated might to move forward. Need proof...

That, friends, is the face of determination. The fact is, my little girl is tough. She has had a ton of setbacks, but she keeps bouncing back. Her little body doesn't always cooperate. In fact, most of the time it doesn't, but that doesn't keep her from trying. Truth be told...if she weren't so determined, there are days when we would just give up. But she just won't give up. She knows what she wants to do and even though she can't do it yet, she keeps trying.

As Kelly and I talked about it last night a few other things came up...

The first thing...This time two years ago we were not sure that we would make it this far with her. Christmas '09 was a sad time for us. What should have been a joyful "first Christmas with a baby" season was actually a really somber time for us. Livi was about 8 months old and that was when things really got difficult for us...we actually thought that losing her was imminent. There was the difficulty breathing, the need for heart operations, and seizures. If you follow our family at all, you know that for us, that is life for us now...a full, joy-filled life that isn't always easy, but it is ours and we love it. The fact that she is still here is, at least in our minds, a miracle. For that we are wildly thankful...and anxiously awaiting our THIRD Christmas with Livi!

The second thing...It was the seizures that were the worst. They were debilitating. They took our baby away from us. She didn't move or have much (if any) facial expressions. She would just lay there, looking at nothing in particular. We were planning on being wild, camera-wielding parents who constantly had then lens of our recently-acquired camera focused on our kid, capturing her every smile, stream of saliva and jerky 8-month-old movement. That didn't happen. Our kid didn't smile or move around. She just laid there. Our response...put the camera away. The shots that we took made us sad. They weren't as exciting as those of our friends, so we deemed those moments not worth sharing. We wanted people to love our girl like we did and were afraid of producing any pity-inducing shots. We didn't print pictures as Christmas gifts or send out Christmas cards. We just put the camera away.

We realize now that this was really selfish of us, so forgive us. We think she is beautiful and want you to as well. We thought that if we hid the dark parts of our life, you would think our life and Livi was more beautiful. The truth is, it is dark at times, but it is beautiful as well. Through our beautiful little girl we have begun to be able to see the beauty of life in the middle of brokenness.

With that said, here is a little glimpse into the beauty of the past couple of weeks...

Pure wonder at a candlelit dinner with Nana and Papa

Story time before bed while at CMH

Sweet time before heading back to work on Sunday

Pretty eyes gazing out the window, plotting our escape

Feliz Thanksgiving-o

2011-11-25T10:55:00.000-06:00

Yes, that was actually said at my house yesterday. Thanks for the comic relief, dad. Every once in a while he likes to display his stellar Spanish skills.

On a more serious note, I'll let you guess where we are based on the Thanksgiving dinner we had yesterday:

Actually, for cafeteria food for Thanksgiving it was really decent, so don't feel bad. We also had an entire pecan pie delivered by some friends later that day, so we really came out on the best end of things. It was delicious. Thanks, Boyds!!!

So, Livi is still in the hospital, which, I have to say, is longer than I thought it would be. She is doing pretty decent, but changes during the day how much oxygen she needs, how much she is coughing, how awake she is, so its really difficult to give each day much different than a general judgement. She is, though, better than at the beginning of the week. Its really just a nasty cold that got a hold of her a little stronger than the last few. Also, being sick increases her seizures (really any stress to her system increases them) and yesterday that was the most frustrating part of the day.

Two days ago, though she was doing wonderfully and was VERY awake and playful. I wish I had some decent video of what we'll call the yogurt incident, but of course as soon as we got the camera out she went "deer in headlights" on us. Kids. *sigh* I was sitting in the recliner holding her and my dad kindly went to get me some peach yogurt for a snack. Since both hands were busy holding her my adorable mother spoon fed me the yogurt. I cannot explain how intentional Olivia's staring became except to say that she was VERY clearly communicating that she wanted the yogurt. She would watch the spoon to my mouth, stare at me, then turn her gaze to stare at the yogurt cup and then bore a hole with her eyes in my mother until she got some tastes of yogurt. The staring and smacking (yes, she smacked) went on for about 5min until I decided she had enough "tastes" of yogurt. She continued with the staring to inform me that she was unhappy about being cut off. It was just the latest episode where we see so much of who Olivia is in her own brain, but cannot always show us. We are so grateful for these glimpses, even if they are in the hospital for now.

On a Gabby update: she was 5lbs 7oz on Tuesday when my dr. measured her, and I will be full term (37 weeks) tomorrow. I am VERY pleased with her size considering and am using this time in the hospital to lay down and rest, per instructions from my dr. I realize I have not posted a "belly picture" and will spare you all the bare belly pics (you would have to shoot me or drug me to get me to take those pictures), but will send you the picture I took earlier this week to send to my sister, who is also pregnant (26 weeks). We were comparing belly sizes. I think I won--as long as winning is being fatter.

By the way, how do you like my dirty mirror?

Hello, again, dear 'ol friend

2011-11-21T11:46:00.000-06:00

Here I am, sitting with my feet up in a recliner with the computer on my lap staring out the window on this cold and rainy Monday. The laptop is mine. The recliner and the window belong to Children's Mercy.

We had a fantastic weekend with Nana and Papa from Texas, which, unfortunately, ended in a little bout of sickness that is worthy of staying in the hospital for a bit. Livi is doing well--being herself and tired as can be right now, but unwilling to take a nap-- of course. Somehow this makes me feel better. She is doing well enough to be ornery. She just needs a little more oxygen and a special kind of suctioning-- neither of which we can do at home. Otherwise (besides a small fever a few hours ago) she is just fine. Hopefully we will be out for Thanksgiving and a visit from Grandma and Grandpa on Wed, but only Olivia knows.

Its probably good that I'm sitting here and not at home. There isn't anything to clean or laundry to do so I can't get into too much trouble. I've been having more contractions and finally some that are painful-- usually around the end of the day. I'm trying to ward off Gabby (if, in fact she feels like coming early). I didn't have any contractions with Olivia until labor time, so this is new for me, but I see the perinatologist tomorrow and my OB Wed, so I'm well taken care of. Brian is getting more and more protective of me walking fast, carrying just about anything and in general moving. Its cute, and a little difficult for me, so I find it annoying, but I appreciate that he loves me that much. I just get so bored watching him do everything!

I would post a picture, but since she had the fever Livi is just laying naked in her bed staring at her mobile trying to go to sleep. Maybe we'll post one where she looks presentable later.

New "problems"

2011-11-16T10:52:00.000-06:00

I've been thinking and talking with Brian about how things are different around our house than a year ago, and much different than 2 years ago. Whenever I get "down" or have a moment being sad about what Olivia is not doing I am reminded of two Christmases ago, when the seizures first started, and she was "awake" for about an hour of her first Christmas. It was heart-breaking for sure. Our expectations of that day had been much different.
Last year she participated a little bit more, but was still sleeping tons and seizing quite a bit.

Now?

Lets just say this picture was taken before the sun came up last week. I couldn't keep her in bed any longer, so being the great mother I am, I set her in front of the TV to watch Mickey Mouse Clubhouse. (Please excuse the fro. Her hair had not been "did" at 6:30)

So, now, instead of worrying about her sleeping all day and trying to wake her up for things I have to worry about her actually taking a good enough nap. I'll take it! Instead of picking one or two things to try to work with her on as far as therapy, or which toys to play with I find myself running out of ideas.

As every mother knows, with less sleeping comes more tantrums--and my child is no exception (sorry grandparents). For example, yesterday Olivia woke up about 7am and didn't want to take a nap until 11am, despite my many attempts. Thats all fine and good, except her preschool starts at noon. You can imagine how that morning went. 7 hours of sleep the night before and a thirty minute nap yielded a HUGE tantrum thirty minutes before preschool was over. I actually had to take her home early because she was crying so hysterically. As usual, once we got in the car and had one of our "talks" about how big girls behave I got one of these "who me?" looks and then silence--just looking out the window like she hadn't just thrown the biggest fit ever.

Ah--life with a 2 year old. But, we have so much to be thankful for, and are not complaining about our current set of "problems". When mommies run out of energy by the middle of the afternoon life is good. I actually have to go now and convince my daughter, who has spent the last hour awake in her bed, that its time to take a nap. If that doesn't get done, I'd love to show you the pictures from the huge tantrum at physical therapy that will ensue.

Ramp follow-up and weekend pics

2011-11-12T14:39:00.000-06:00

We just wanted to say thanks so much for all of the verbal and financial support for the ramp project so far. We wanted to make it easy for you to access the initial information or to pass it along to someone else (which we would also appreciate). So, over to the right of the posts on the blog under a heading that says "what you need to know" there will be a link to that first post about the ramp project-- that way even when it doesn't show up on the recent posts you can still access it easily. Or, again, if you have any questions please contact me. I'd be happy to help you out in any way.

We haven't done a super job of taking pictures of our family lately--blame it on the illnesses or pregnancy or whatever, we just haven't. Since Brian has part of Friday and Saturday off, those are our weekend days. Here is a short picture documentation of our weekend so far.

Thursday night we practiced standing (which turned into leaning) with daddy. Then, some snuggle time before bed. There was really not enough room for everyone on this loveseat. Gabby let us know.

Speaking of Gabby, we saw eyes opening and closing and her tongue sticking out of her mouth during this sonogram. Thats her face on the top (for those of you who are confused) and she is looking directly at you. Take a look at that cheek! She might have a skinny belly, but definitely getting some chubby cheeks!

Ahh, Olivia. A trip to Target (which always warrants a stop by the dollar bins) yielded this beaut. No, we did not buy it. We are those people who put things on their heads and then stick them back on the rack. Sorry. Promise she doesn't have lice or anything. Its a Christmas tree headband, in case you couldn't tell. It was actually less creepy than the alternative--a headband with a bunch of possessed gingerbread men dancing on her head. Yikes!

Blog help, light reading, and Toys "R" Us

2011-11-09T14:36:00.000-06:00

So, if you've visited the blog before you might notice it looks different, and a little wonky. Can I just say, this technological stuff is not my strong suit. That being said, if it is yours and you feel like giving me a tutorial, there are some changes I would like to make to the blog and I could use your help. Pretty please?

This morning I had to take Livi to her pediatricians. We don't go there very often because mostly she sees specialists, but we had to follow up about some issues last week. At preschool last week Livi did not pass her hearing screening. Boo. There seemed to be a kind of blockage in her ears. After talking with the pediatrician today, they looked better. The culprit? Probably remnants of the cold lurking in her ears. We plan to get retested soon to make sure. But, while we were waiting to see the dr. I managed to find a large and pretty book for us to read. We practiced "hands up" command and she got it after the first time I helped her. She repeated hands up when I asked and I helped her hold the top of the book. The right hand seems much more adept at holding than the left, so its a one-handed job, but Livi held the book for herself 4 or 5 times when prompted by "hands up" for an average of 15 seconds per hold. Pretty good if I do say so myself!

So she had some spittle and I caught her with her eyes closed. Still cool.

Lastly, I caught wind of this toy guide for differently abled children put out by Toys "R" Us. I looked through it and Livi is differently abled than their idea of differently abled, but I thought the idea was cool and it would be helpful for lots of people, so here is the link to the toy guide.

Our big news

2011-11-07T12:42:00.003-06:00

No, Gabby isn't here yet. Thank God. But we have some other very important things happening in our life that we are ready to let you in on. As a side note, this will be a longer post with no pictures of Olivia, but it definitely concerns her. Try and stay awake grandparents.

So, to start, when Brian and I moved to Kansas City 5 years ago we knew we were coming by ourselves. We didn't know anyone and our parents didn't live here. When we had Olivia 2 1/2 years ago I bet some people wondered how we would make it without the support of parents around. Today, you will see how we made it. Besides wonderful parents who come as often as they can and are totally supportive of us, we have acquired some amazing friendships. Friendships that might be as close to family as you can get without being blood related. We are so blessed with lots of friends who look out for us even in ways we aren't looking out for ourselves. A couple of months ago these friends came to our house with an idea. Today, you will see what happened with that idea.

For a while now Maggie, my dear friend and a physical therapist, has been asking me reasonable questions about making our house more accessible for Olivia. I didn't know the first thing about our options as far those things go, and knew for sure we wouldn't have the money to do any kind of huge renovations to the house. So, I just kept pushing it to the back of my mind and putting it off in conversations with her. I just didn't know what to do. Her husband, Wes, is a very talented carpenter and works all kinds of construction and renovation projects, both as a full time job and on the side. A few months ago Wes, Neil, and Steve (all building professionals in some capacity and friends from church) came to our house to discuss our options as far as accessibility. It was obvious (especially given my pregnant state) that it was difficult for me to carry Olivia and her Kid Kart or Kid Walk to the car as they were both beginning to get heavy. Olivia will not be getting any lighter and with another baby on the way they saw that we would need some help. Here is what they proposed. This is a letter from these three wonderful men to you. Please take the time to read it.

Ramp letter

Along with the information in the letter, they wanted us to pass along two things: the official budget for the ramp/porch project and a picture of what the proposed changes will look like. (Sorry about the size. Click on it for a bigger picture. We had to change the format of some of these documents.)

Here is what our porch looks like now

Here is what the proposed project will look like finished

We are so humbled and very excited for these changes to our house. If you would like to give towards the projects there are two ways to do so outlined in the letter above. If you have ANY questions, please email me (kelly.s.yocum@gmail.com). If they are "official construction" questions or something I can't answer I will forward them along to Wes. If you would like the PDF of any of these documents printed out or emailed to you we would be happy to do so. Just let me know.

Told you. Long post. But worth it, I think. This project will make life for us and Olivia more than manageable. I can't believe that people care about so much that they would offer their services and their time to organize every bit of this project just so we can get Olivia in and out of the house easier. Amazing. Thank God for them.

2 things to celebrate!!!

2011-11-01T09:15:00.000-05:00

First, I gotta say-- just ONE comment about the fro? Really? Jamie is it? So disappointed in you people. So disappointed.

Secondly, we need to get to the celebrating. Its been quiet around our house the last week. Livi got a cold early last week and we have been doing a lot of snuggling and reading and sleeping AT HOME-- which means (drumroll) that we managed to get through 95% of a legitimate illness without going to the hospital. This is a first, people. Get excited. I say 95% because she is still coughing some and has a little bit enough of a runny nose to warrant not going to preschool today-- which makes me sad, both for her and me. But, I'm sure that another day of rest will get us ready for our usual schedule. This is what my Tuesday night through Sunday has looked like

By the way, she is watching cartoons in this picture. Thats the life, right? Also, sorry about the poor quality of the picture. I was trying to figure out why that was when I realized I probably had to squat down for this picture. Being 33 weeks pregnant (I know!!) my balance is not what it used to be. Pretty sure I'm falling over during this picture.

And on to the second celebration-- Livi's new chair came! This is great because we've been squishing her in this blue rocking chair for like ever. Its a great chair, but my kid is freakishly tall now and no longer fits in it. So, a beautiful and generous early Santa Claus gift came yesterday and we could not be happier with it!

It comes in two boxes in two parts that hook together with Velcro so even an idiot like me can put it together. See, isn't this picture quality better? Because I'm not falling over. We made our first venture into normal schedule yesterday right after the chair came when Livi's vision teacher came for therapy. Of course we had to try out the new chair!

That pink light up thing is called a light stick. She loves it. She was raising and lowering her arms on command to reach the light stick. Every time I look at her now I realize she looks more like a girl and less like a baby. She just looks so old! AAAHHH! Also, how do you like my laundry in the background. Don't judge--its clean and folded and has since made it into the drawers (the hardest part of laundry for me.)

Hopefully we'll soon have pictures of the whole fam out and about in this beautiful fall weather.

Happy Birthday, baby!

2011-10-26T16:43:00.000-05:00

Brian,
Today you are 29 and I could not more proud of the man you have turned out to be. I have loved you for the past 5 1/2 years, and am more impressed with you now than I ever even hoped to be. You are sensitive and caring, a diligent worker, compassionate, honest, and soulful. You are talented, humble and selfless-- especially when it comes to your family. We have been through a lot as friends and spouses and finally as parents and we will go through a lot more. But now, more than ever, I am sure that with you by my side I will be taken care of, protected and lead in an honorable way. Livi and I love you so very much! We wish you the happiest birthday ever!

And since the blog is mostly about her, lets take a minute for a Brian and Kelly photo montage...

No more Target toys

2011-10-18T11:33:00.000-05:00

I think we are reaching the end of an era with Olivia. It will not be long before we won't be able to buy her appropriate toys or devices at the store and cart them home with us in the car. We will soon be relegated to only online shopping. Some people can online shop just as well as in the store. Not me. I like to actually see what I'm buying in person before I spend all the money on it. But, thats how it goes. The toys in the store that are intriguing to her she cannot operate because they require more fine motor skills than she has. Yet, the toys she can operate on her own are for much smaller children and the reward (lights or music or whatever) is not appropriate for her age. We are morphing into the "special needs" section of entertainment which most of the time just means "we're going to charge you triple for it, just because we can".

If you have seen any pictures of Olivia in her little (stressing little) blue rocker you know she is obviously way too tall for it. Her poor little head tilts to the side because her body is so dad-gum long! We use that chair mostly for chilling at home. We've been looking for something to grow with her, but it needed to be size appropriate and have straps to keep her in since she can't sit in a regular chair by herself. You cannot go to the store and buy these things. Instead, you have to get them online and pay, yes, triple the price or better. So, in the next week or so Livi should be getting one of these in the mail...

And, since its poop brown you KNOW we had to get the purple straps. This is a VERY generous Christmas present from a very dear loved one. Thank you. It should fit her for a couple of years and will sit in this base thing in the living room or will actually also strap into the dining room chair so we can all eat together.

Later this week I will post pictures of Olivia in her new nighttime sleeping device--a hip brace. If we are diligent (you better believe we will be) this brace SHOULD keep Olivia from needing hip surgery later on. Will she like it? probably not. It doesn't have purple anything. Its just white. But, she will tolerate it and then get used to it and we won't have to worry about having a hip cast on some time down the line.

The best toy she will be getting soon? Her very own iPad. Yes. Before you judge, hear me out. It IS for playing, but mostly for therapy. Apparently the iPad is replacing all of the previous very expensive speech tools with of all of its amazing therapeutic and educational apps. It will also hook up to her switch with an adapter, so instead of trying to make her fine motor stills improve to use the touch screen, she will be able to use her switch. I am SO excited to get this for her. Merry Christmas, sweetie! Don't worry, we'll be sure to get you a purple cover for it.

So, am I done shopping at Target? Heck no! I got another girl that will be here in a matter of weeks (9ish). You better believe I will still be visiting my local Target plenty!

By the way, I'm a terrible blogger. We're home. Got home Friday. Olivia was just SUPER sore all weekend from the spinal tap on Wed. but back to her old self now and getting ready for preschool as we speak.

Room for one more?

2011-10-13T11:31:00.000-05:00

We've been busy busy lately, but in a good way. Brian went to Philly last weekend for a conference and the girls had the weekend to themselves. We survived and had lots of fun! Then Tuesday afternoon we left for Livi's neurology appointment in St. Louis. Wednesday at 7am we got to the hospital and they did a spinal tap to use some of her spinal fluid for some more tests as to the cause of her epilepsy. Later that afternoon we met with her neurologist in clinic and came up with more steps to our plan for Livi's treatment. We are so lucky to have providers that care so much!

We got home from St. Louis last night at 8pm. At 11:30pm we were in Childrens Mercy's ER because Livi had another fever. We wanted to check everything out considering she had needles stuck into her spine earlier that day and were concerned about infection. Turns out she has some sort of a spot on her chest x-ray that is either pneumonia or a slightly collapsed lung. I might know more when I speak with the dr.'s today, but suffice it to say we are all very tired, but doing well considering. She is just on her regular home regimen of things now with the addition of antibiotics. We'll see where we go from here. Brian and I might be worse off than Livi--getting home from the hospital at 4am after two days of travel and getting up at 5am the day before.

I had another (one of the weekly) perinatologist appointments for the baby (who we are now positive we will be calling Gabrielle). She looks great again this week! But the craziness of the last few days got me thinking---do we really have room for one more? Of course we'll love her like crazy, but so much of what we do even down to the hour is about taking care of Olivia I just don't know how we'll make it work. I know, I know....everyone does. We will too. Just seems insane to think about. We'll want Gabby to feel she gets as much attention and love as Livi. What will we do with a midnight ER trip? Only have one of us take Livi? Take all of us? Go nuts?

Oh sheesh--it'll work out somehow. I do need your help, though. First name is definitely Gabrielle. Last name is still definitely Key (don't worry, honey). Middle name is under further review--suggestions?

No pants afternoons

2011-10-03T13:21:00.000-05:00

This weekend was the first time in a year and a half that Brian and I have found time to get away for a few days without Olivia. It was fantastic, but of course we missed her. Because of the generosity of some very kind friends, we spent the weekend in northwest Arkansas at a lake house alone. We fished. We slept. We did watch about an hour of football while we ate lunch. And then we fished some more. The whole time we enjoyed the best weekend ever and this view...

Meanwhile, in Joplin, my mother enjoyed this view...

Thats my grandma and my dad reading Livi's pop-up book to her on my parents new and wonderful back porch. I'm trying to convince my mom to call it the 'mom cave'. I'll let you know how it goes over... I think the picture was meant to convey to me that everyone was perfectly fine and having a good time. The first thing I noticed was that my mother was making sure Olivia felt right at home at their house--by keeping with our tradition of 'no pants afternoons'. Generally, if we aren't going out of the house, Olivia is doing stuff in a diaper and a shirt. Its really just laziness on my part. Also, Livi gets Miralax regularly and its just easier to keep from washing another pair of pants, thus she just doesn't wear any. Apparently no pants afternoons doesn't keep EVERYONE from washing extra laundry---sorry grandma!

Side note: I am 29 weeks pregnant. How is this going so fast? I need to get my act together. The 'nursery' is still 100% Brian's office. Whoops!

Get it together, woman

2011-09-23T08:49:00.000-05:00

...And I did. Sort of. As much as I ever have had "it" together. Livi came home Wednesday night and I was very worried of dealing with the same sort of issues. She still does cough some, but so far no throwing up and she seems to be in a really decent mood and the best part--we are all sleeping at night! Thank you, Lord. We made a few changes to her regimen, but it seems to be helping. Also, if you see us out and about the next three weeks or so she will be wearing her oxygen again. Its just a precaution in case she gets sick again for her pulmonary hypertension. Technically she is breathing just fine now, so don't worry.

Sometimes I have to stop and remember what our life used to be like with Livi--the early years. It was really difficult and we didn't hardly go out in public, but we were happy to have her alive. I have gotten spoiled and this seemingly "backwards" moving lately has really irritated me, not just for her, but honestly because it cramps my style too. How selfish. Perspective is everything and the Lord has been gracious to slap me in the face with that. Quality of life does not solely depend on how easy things are for me: trips to load the car, time it takes to set up her computer and switch, the fact that its been May since I've had a haircut. Those are not the things that make life joyful. I cannot even legitimately find my joy in how Olivia is doing---trust me, I've tried. My joy comes from God who sent his Son to die for me, that I might be given a new heart in this life and an eternal home in heaven in the next. That is the only thing that never, ever changes. So, pull myself by my bootstraps? Nope. Tried a bunch. That does not work. I know I have to look to God to fulfill me and help me cast my anxieties on Him. THEN, and only then do I enjoy the life I have been given.

We are also finding joy in the Lord in the anticipation of our new addition. We went back to the perinatologist yesterday and baby girl is growing everywhere, but her belly is still little. The bloodflow and amniotic fluid and movements all look good. Maybe I just have skinny babies. Don't judge. They are just as cute and cuddly as the fat ones. Come to think of it, it didn't take Livi long to acclamate to her tire-rolled arms. Just now babes #2 got super fiesty and is kicking the crap out of me. Probably 'copping a 'tude: "yea, don't judge."

AND (what, there's more?) just to wet your appetite: Brian and I have a VERY EXCITING thing doing on in our lives right now that we will be happy to tell you all about---next week.

Not gonna lie...

2011-09-21T11:36:00.000-05:00

Don't hate me, but we've been back in the hospital with Olivia for two days now. She is doing great and will probably go home really soon. Its hard to explain what exactly the problem is, so I just avoided it all together. Its a real talent of mine.

For about the last week and the half her allergies have been gigantically infuriating. She has been coughing and vomiting up mucus and some food and sometimes medicine. The real problem is she gets choked so easily (thus the eating through the feeding tube) so Brian and I have been getting little to no sleep due to having to begin close to life-saving techniques on her. We are tired. Monday she needed extra oxygen and we brought her into the ER. They suctioned her good (with a special suction we don't have at home) and she has been doing better. Just an hour ago getting off oxygen all together. This afternoon they will be checking to see why she is vomiting. When she had her feeding tube put in they also did a technique where they tightened the bottom of her esophagus to keep acid and food from reaching her mouth. Today they will put some stuff through her tube and then watch her on an x-ray to see if the food is coming up past the surgery place. I hope not, though I just want to not have to worry about driving in the right lane all the time in case I have to pull over and keep her from choking to death on her vomit. This has happened a few times in the last couple of weeks. Scary and not fun.

So, instead of being Suzy Sunshine and telling you all the wonderful things about our life--of which there are many--I'm going to be negative and honest and tell you how we're really feeling. Finally rested and ready to get our girl back to normal.

Fall Fabulousness

2011-09-13T10:04:00.000-05:00

So, I unashamedly LOVE fall. I don't know what it is. Well, I kind of do. I am a sensory oriented person. I love to smell things baking or yummy candles, snuggling blankets even when I'm not cold, holding tea even when I don't necessarily want to drink it. I guess its all a comfort thing. At the risk of all the women who read this hating me, I also LOVE football. Like, love it. Brian always says that part of the reason he married me was so we could wake up on Saturday mornings in the fall and watch 2 hours of College Game Day together without feeling bad. And we do.

So, I have been waiting, and not very patiently, for fall to arrive. I am also the woman who wants to decorate for Christmas on Thanksgiving--something Brian does not LOVE about me :)
So, waiting and waiting to celebrate fall in my own freakish way. But, fall has begun in my mind. I have been on this year-long hunt for the perfect smelly candles. I am REALLY picky for some reason about this. I have looked at cheap and expensive and everywhere in between and have not found candles that I loved, until last week. Oh, Febreeze, I did not expect to find my perfect candles on your shelf! But, $5 a piece? Yes. I think I will. Something pumpkin and something apple and that did it. They smell great, even if you don't light them! So, thanks to my fall candles, fall has begun. Which gave rise to this beautiful Target purchase yesterday (when I was supposed to be picking up just eggs)

Delish! So, here's my dirty little secret-- I don't really like to cook or bake in the months between March and August. Maybe its too hot or something. But, come September 1 and my husband can't keep me out of the grocery store. This little baking beauty is LEGIT. For real. I looked at all the recipes and there is not one in there that I wouldn't eat. And, just to make you feel better, there are zucchini muffins. Can't wait to break this thing in.

For those of you who just like to read about Olivia, I have something for you too. Just cause I kinda like her as well. She has gotten into this habit of making a pouting face pretty often. I'm not really sure why or where she learned it (I swear it wasn't from me!) but she wouldn't wipe this angry, pouty look off her face yesterday. I gave her her piano and she banging the keys REALLY hard and looking at me with this pout. So, I have to video it. She stopped pounding so hard but was still pouting. Here it is...

Quick note

2011-09-11T09:07:00.000-05:00

We brought Livi back home from the hospital yesterday, Saturday. I think sometimes she just wants to see her friends at Children's Mercy. Sometimes there is no other reason we go. So, she is doing well, Brian and I are rested and we are all at home, which makes Tugger one happy dude. Thanks for your prayers.

One guess where we are

2011-09-09T11:48:00.000-05:00

Wednesday morning after a time of terrible constipation and a 105 degree fever I brought Livi to the ER. Her white cell count was seriously up, so they figured it was a UTI with constipation which happens pretty regularly, I guess. After A LOT of miralax she seemed to feel a lot better and the doctors, now knowing her well, figured they'd keep her a few days to keep an eye on her. So, yesterday morning I got to the hospital and she is still on oxygen from the night before. They did a chest x-ray and she has a little "schmutz" on her left lower lobe of her lung. Might not turn out to be too much since she's just on a bit of oxygen. This morning while I was holding her she had this really deep wet cough. *sigh* Olivia. Its my daughter, so nobody much knows how any of this will play out, so we're just waiting and watching. Livi seems to be feeling pretty good...sleeping a bit more than usual, but sitting up with Brian and I and reading books and watching movies a few hours a day.

Also yesterday morning Brian and I went to the perinatologist again. The baby is growing great except for her belly.? I know, right? Why the belly? The Dr. said not the worry about it (yea right) but her weight is right on track so far so we have a lot to be grateful for. We go back in 2 weeks for them to check her again. Maybe I just have skinny babies. Lord knows Olivia plumped up just fine. Anyone remember her tire arms? I do.

A step in the right direction

2011-09-06T16:57:00.000-05:00

I mean, I know I don't need to say it, but awesome weather, right? We had a fabulous holiday weekend with my family. Brian preached two of the three services on Sunday and then Monday was beautiful so we headed out (along with half of Kansas City) to the zoo. Livi and I played in the shade while Brian got us some lunch...

The post title is really more about me than Livi-- sorry grandmas! Livi actually hasn't had a great couple of days. More seizures than usual and some other bodily function problems that we are currently working on eliminating. (two guesses) Preschool today was less than stellar because of all of these issues and yet, I found myself thinking 'what a wonderful day despite how Olivia is doing'. I know that sounds strange, but for the past 2 1/2 years my life has completely revolved around the kind of day Olivia was having. Horrible, I know. But its honest. But today---today even though I knew Livi wasn't doing really well at preschool I left there from dropping her off and happened to have an impromptu walk with Brian from work to lunch at McCoys on the deck on the most beautiful day of the year. The whole day has been such a blessing and I am finally learning to be my own person. (Thanks mom, also for reminding me that will only be the case for the next three months. Thanks a lot!)

Yay for the McCoy's patio.

And definitely yay for this man! I love him so much!

We LOVE preschool!!!

2011-08-30T16:01:00.000-05:00

So, we've all "collected our thoughts" since the last blog post. Especially Olivia. Thursday and today went GREAT at school! All of the teachers and therapists are so encouraging! I actually wasn't even planning on taking her to school today. She had another flare up of allergies on Sunday and hasn't really gotten over it. At 11 she woke up from her nap yelling at me, wide awake, and not coughing or sneezing, so I was the skeezy mother who took her kid to preschool late without taking a shower. Nice, huh? And, it all worked out because she had a GREAT day! So, here are the pics to go with my thoughts...

In case you can't tell, this is Olivia and my big 24 week belly. Livi was saying hi to her sister, and her sister was emphatically saying hi back. Well, either hi or get off me. Hard to tell.

After preschool on Thursday watching the Royals with daddy. Good times.

And this is mommy being lazy. My phone was acting crazy about rotating this so this is the picture, a little crookedy. Is that a word? Anyway, this is a big deal because this is Olivia's very first picture EVER! YAY!

Well, Olivia is yelling at me about something and she is making Tugger sigh and lay on the floor, so I better straighten things out. Can't wait to see Grandma, Grandpa, Aunt Mal, Uncle Allen, and Aunt Amy and Uncle Phil this weekend. PARTAY!

First Day of Preschool

2011-08-23T20:40:00.000-05:00

So, it didn't go quite like I had hoped. I actually almost didn't even take her this afternoon because her allergies were so bad the night before that she barely got any sleep. I did take her and she slept through at least some of it, but if I got 4 hours of sleep the night before I think I would sleep through preschool too. We just started her on some allergy medicine today, so I'm hoping that makes Thursday's preschool adventure a little better. Nevertheless, we took her and took a few pictures...don't get excited...she's sleeping in all of them.

Maybe my expectations were too high for today. I think I just wanted a "regular-ish" preschool experience. Just a regularish something for Olivia. Well, maybe it was for me too. Today, when I knew she wasn't feeling well and was really tired I left dropping her off at preschool heartbroken. Even here, where there are other kids like her, she was "different". I know it was just one day. I know there will be plenty of days when she has a fabulous time totally awake at preschool, but it was a very difficult afternoon for me. I think I was hoping we would just fit in today. Probably just hoping that for myself. God is teaching me a lot of things, but I am a reluctant student, especially lately. I just want what I want what I want. You know?

We'll get there, both Olivia and I. She will have a great time at preschool most of the time, and eventually I will continue to love the life that God has given to us.

Hello, world!

2011-08-11T17:21:00.000-05:00

Hey everybody! I'm ornery just like my sister and the dr. had to piss me off and push on me to get me to switch positions. So then I punched my mom a lot. Everything looks perfect on me so far. Just like my big sister! Maybe thats because we're both GIRLS!!!

Thats right. Another lady in the house will be making her appearance in a few short months. I will be continuing to go to the perinatologist in addition to my OBGYN monthly until the babes #2 is born just to keep checking on her....HER....ha!

My kid? In Preschool?

2011-08-10T10:47:00.000-05:00

Lord help us. It looks like the last of the meetings are out of the way and this preschool thing might actually happen, which is great since they start in less than 2 weeks!

Can I just say that my expectations, however high or low they were, of the people, facilities, and opportunities that would be available to Olivia and kids like her have been blown out of the water. In a good way. I know that living in a metro area has a lot to do with that. But the care, concern, and energy it takes for people, besides our family, to give her these opportunities is a complete miracle to me. People care for Olivia, and lots of kids like her, they care for us and they are willing to go so far out of their way to show it. We are in awe--constantly of this fact. And that leads us to preschool.

I know we've gushed about it before. How perfect CCVI preschool is for Olivia, her needs-- emotionally, medically, and therapeutically... Well, I won't continue that conversation. Today is about how I feel about sending her to preschool.

Scared. Excited. Nervous. Anxious. Some in good ways and some in bad. Not that has anything to do with the people or facility, but I'm used to being the only one caring for Olivia. Like ever. Now I am leaving her with someone (a lot of very qualified someones) and missing out on things she is doing, parts of her day-- both the good and the bad. Will she fall asleep because she had too many seizures? Will she make friends? Will she choke tasting food? Will she cry? Will she accomplish a new milestone that I miss? I realize mostly all regular fears for moms sending their kids to preschool-- but its new for me and I'm compensating with chocolate. In cookie and liquid form.

So, I'm ready for the criticism. Its August (though 70 degrees right now, which feels like 50). And 10:45 in the morning. But listen, not normally being a chocolate eater or drinker--I am out of orange juice, my drink of choice lately, and so I am left with water (which I am drinking while the hot chocolate cools down). I also don't normally eat cookies, especially with chocolate in them, but I gotta shout out to my girl, Jami, who made them with love and then conspicuously sent several home with my husband last night. They are delicious, but the more I eat, the fewer he will. That sounds legitimate, right? Thanks, Jami, for my extra 300 calories today. My baby thanks you too.

And, tomorrow we see an echo of the baby's heart, maybe some other stuff, and find out what we're having. Oh hell, watch out. I just might blog two days in a row!!!

Anniversaries and other stuff

2011-08-05T20:04:00.000-05:00

I've gone and done it again--waited too long to blog so now I have all this stuff to say...

First of all, a happy 5th anniversary to my wonderful husband. We are not the people we were 5 years ago. In a lot of ways we're better because of each other, and because of Olivia. My appreciation for Brian goes so much deeper than I could have ever thought the day we got married. I count myself extremely lucky and wonderfully blessed to have him in my life.

Secondly, I know you all are on the edge of your seats, but you only have to wait until next Thursday to find out if we're having a boy or a girl. We really don't have a guess and we really don't care which. Just to be safe, they will be doing an echo of the baby's heart in addition to some other measurements just to make sure everything is okay because of Olivia's history.

I probably mostly haven't been blogging for two reasons: 1. Its been so flipp'n hot we haven't been going anywhere or doing anything unnecessary for the last month or so. So, no cute pool or park or zoo pictures, but hopefully to come. 2. I LOVE helping Olivia walk and crawl, both of which she is improving on and wanting to do more often. This is awesome, but if we do that for about an hour before Brian gets home I can barely hold my head up for dinner time. Its one thing to crawl around on the floor with her, but to bear both her weight and my extra weight while maneuvering is tiring.

AND, since I can't help her do these things and video or photograph it all by myself, here are some pics from today hanging out with daddy after an afternoon of running errands...

Please excuse the lack of pants on Olivia. When we get home in the afternoon in the summer thats just how we roll...diaper only.

We're back...and tan

2011-07-25T11:51:00.000-05:00

So its been a while. We had Brian's parents visiting us the three weeks ago and then we left with my family to our wonderful vacation in the Outer Banks, NC for a week. We just got home Saturday night. We are exhausted but we are in one piece, more tan, and fatter. Well, maybe just me. 19 weeks and counting!

Will post more pics later this week. The 3 amigos in the far left picture are Brian, Philip (my brother), and Allen (my brother-in-law). They spent the week boogie boarding on the beach just steps from our house. We are so blessed to have such wonderful family!

Botox?

2011-07-01T15:33:00.000-05:00

My favorite part about this post is that a few days ago I was saying we NEEDED all these adjustments to the house, yada yada yada and how expensive it would all be and NOW I'm telling you about Botox. And guess who is getting it?

If you don't have a child with special needs or someone in your family with a muscular illness this probably won't make any sense to you. For at least a decade (at Children's Mercy anyway) they have been using Botox injections to help children with high tone in their bodies. What does that mean? Well, Olivia's muscles have the same amount of muscle in them, but has either almost no tone (where she lets herself flop around) or high tone (when she goes straight as a board). There is a particular place on the inside of her right leg that constantly crosses over the left one making it very difficult to walk or even stand correctly. Today we saw our rehab dr. who works with our physical therapist and we decided that this leg crossing isn't skeletal (she doesn't have hip dysplasia) but its in her muscle. So, next Friday she will be getting Botox injections in her leg in that one area that causes the leg to cross over. Without getting too "sciency" that will relax the muscles in that area of her leg for about 3 months and might allow that leg hang closer to straight down rather than sideways. If it works, we can continue the injections every few months. If it doesn't, no harm done, well, besides the pain the shots cause. Though I'm sure Olivia and her new two year-old attitude won't see it that way. She'll get over it.

On another note, geez! Does anyone else find themselves waiting for cooler temperatures?

Gonna have to make some changes

2011-06-28T12:01:00.000-05:00

We are so happy to be settling in again at home. Livi has taken a few days to come back to 100%, but she has done some standing and walking in the stander and yesterday took three bites of baby food. We have had a great time.

Attitude, anyone?

And now to the changes... see those doors she's standing in front of in the last picture? I'm pretty sure they're original to the house--yes, they are 90 years old. There is no knob on the outside and we have done so much weather stripping on these its unreal. We've been talking a bit about putting a ramp in on the side of the house from these doors, but just kept it on the back burner. Being 15 weeks pregnant has moved this more to the front. Is it impossible for me to carry her? No. But it is getting a bit uncomfortable and the hard part is, we have to be honest about how long it might take for her to learn to walk, even in her walker. She is getting better, but is not going to be taking off on her own in the next few months. We are going to start making plans to go ahead and put the ramp in hopefully early fall at the latest. The humbling part is, this is all very expensive and tacked onto her medication costs, preschool coming up, and home medical supply rentals we might be needing some help. Brian and I are praying and considering our options, but the bottom line is, the ramp is moving from a preference thing to a necessary thing. Yuck.

Please be thinking about us and praying for us as we consider the best and most responsible way to care for all of Olivia and the new baby's needs. But, its not doom and gloom. I am feeling mostly really good. Olivia is doing great and we are having a wonderful time as a family this summer. I'm definitely more of a fall girl and am ready for football and the cooler weather, but I'll take what I can get.

Happy Birthday to My Amazing Wife

2011-06-27T13:32:00.000-05:00

So...today is my wife's birthday.

She turns ___ today. I just wanted to say that I think that she is the most amazing wife and mother that this world has ever seen. I am a lucky man to get to spend my life with this incredible woman and I don't think Olivia (and new baby Key that is in the oven) could have a better mother.

So, honey, I hope that you enjoy your day. I hope that your friends and I can adequately express how grateful we are for your life and the love that you share with us. HAPPY BIRTHDAY!!!!

home sweet home

2011-06-22T11:59:00.000-05:00

Olivia was released from Mercy yesterday afternoon. She isn't really sick any more, but its hard for her to change venues, so it was a rough night last night in her bed. No one got much sleep. Hoping that gets better soon.

Guess what.

2011-06-20T20:31:00.000-05:00

We're still here. Sorry its been so long. Still in the hospital. Livi is doing much better. Is on the smallest measurable amount of oxygen, back on regular feeds, but still needs what they call "deep suction". Essentially they insert a very small catheter in her nose and down her throat to suck the gunk out. We don't do that kind of suction at home, so they will keep her here as long as she needs that extra procedure. Looking at at least Wednesday I guess now, but she is mostly in good spirits and much more her personality, which poses some problems laying in a hospital bed 24-7. Honestly, she's not laying the whole time. We are doing a lot of holding, but with the monitors she is on the farthest we can go is an extra foot and a half away from the bed to the recliner. Not very much of a field trip. She is being a good sport and spirits are high with our family now that she is mostly out of the woods. Thanks for the prayers and I will post a picture of her in those horrendous gown with her clean, but very nappy hair soon.

Still here

2011-06-16T15:39:00.000-05:00

We're still in the hospital. Today Olivia is not quite as good as she was yesterday, but considering she is still doing very well. It changes, you know, about every 10 mintues or so. She was on 3L of oxygen when I went to lunch and an hour later was on 1L (a big jump). She might be in a better mood because I brought her christmas lights up and put them around her bed.

Being in the hopsital a lot gives me a lot of time to waste, piddle, whatever. A friend of mine told me about this interview. There are actually 3 of them, but here is the first one. If you have 25 mintues and some tissues around this is a good way to spend that time. Trust me. Since I was having so much trouble getting the video straight onto the blog, here is a link...

interview

Also wanted to take this time to say 'thank you'. Many of the ways John Knight talks about awe he feels when people treat his son 'normally' we feel and see everyday with you all. Thank you. Thank you. Thank you.

just 10 more minutes

2011-06-15T15:45:00.000-05:00

10 minutes. thats how fast things change when Olivia is in charge. I kept thinking I'd wait to blog until she was clearly better for clearly worse. Better, worse, better, worse. Thats how things have been going. She was admitted Sunday night. Was NOT doing well on Monday. Monday night (midnight) admitted to PICU for precautionary sake. Noon on Tuesday back on a regular room. Great Tuesday morning. Less great Tuesday night. Even less great Wednesday morning and now, Wednesday afternoon: the best I've seen her look since Saturday (this is also while she was coming off of an almost 103 degree fever).

I know we all know by now Olivia does things her own way. That was reiterated to me this week. So, she is good now. But things change quickly here. It'll be another couple of days--Friday at the earliest. She is still just on IV fluids (no food) and still having fevers randomly (she hadn't had one before this afternoon in like 36-48 hours) and the labs came back and say just two really common cold viruses, in fact, the exact same 2 she had last October when she went into heart failure. What is it with this girl?!?!?

In the middle of all of that fun, Monday night on the way home from visiting her Brian explains to me he doesn't "feel well". Turns out that would include 36 hours of fevers including topping out at over 103 Tuesday night. He is better now and back to work, but banned from the hospital until tomorrow, so its been a little lonely here, but good.

Probably will blog again soon, when things either are more or less definitive. :)

Reporting live from the hospital

2011-06-13T10:59:00.000-05:00

So, my intention to blog the last two weeks has ended with an unfortunate event: Livi is in the hospital. We brought her in yesterday afternoon after the runny nose turned into more of a deep growling cough and she needed more oxygen. They are keeping her for pneumonia. She is ok, she is on a lot of oxygen for her (3 liters) and since it is just day 2 of this illness (day 3-5 sometimes get worse) we are buckling down for a couple to several days (sounds exact doesn't it?) Of course we never know how long it will be.

We, of course, will keep to up to date on that business, but some other things have been happening too. We had our new baby's 12 week appt last Friday and heard another good heartbeat, so Brian and I are really letting down our guard about this pregnancy and feeling great about it.

Also, Livi and I took an all girls trip to Joplin to visit some friends from home who were having a double baby shower. It was so much fun and we had such a great time. I'll leave you with some stunning photos of the Yocum and Key women in their swimming attire (I didn't bring my suit) when we sat in the baby pool the backyard at my parents. Those glasses on Livi actually aren't goggles, they are sunglasses with elastic in the back. Perfect for her, but a little confusing looking. Pink, as always.

I have to say, this one is my personal favorite. If you don't know her well it looks like she is smiling. She is in fact gritting her teeth-- probably in frustration. Admittedly, the water was a little cold. Apparently, even when there is a heat index of 105 it takes longer than an hour for hose water to heat to an appropriate temperature.

Nosy-nosy

2011-06-01T10:18:00.000-05:00

So, if you haven't met my dog I think I would describe him as strangely human. We're pretty sure he can understand everything we say and he does the funniest things-- just like people. So today, when I decided that during Livi's morning nap I would weed my flower beds I shouldn't have been surprised to hear some racket in the house behind me and to turn around and see this...

and this...

He just cannot stand to be left out of anything. Some day he is going to break the blinds trying to do that.

On a side note, welcome, June. I got three bug bites today while outside for ten minutes. BOO!

Joplin: my aftermath

2011-05-28T01:14:00.000-05:00

I'm a thrower away-er. I know that about myself. If I find a box of things in the closet from years ago, chances are that at least 98% of it will be thrown away minutes later. I don't know why. I guess for the same reason that some people are keepers.

God bless my sister. She's a keeper. If she finds a box of old things in the closet 98% of it is staying in the house. It almost doesn't matter what it is.

I guess its just something inside of you. Its not just stuff in a closet that makes me that way. I'm that way in life too. Experiences, relationships, memories. If I don't need it to carry on, its almost like it didn't even happen. I know its not really functional, but it had been working ok for me for the last twenty-seven years.

Why is this coming up now? Well, I said I would process the Joplin tornado emotionally in time. The problem is, I couldn't, because a lot of Joplin, for me, was already thrown away. I had given it only the status of "the place where my family still lived." I had forgotten, or chosen to "throw away" the fact that I was born there, learned to ride a bike there, learned to play sports there, learned to kiss boys there, learned to drive there and graduated there. Learned to be a friend and a sister and daughter and a student and a competitor there. And a million other things that have made me who I am. I didn't give it any credit. I've been gone for ten years now and I had chosen to throw it away for Fayetteville, and eventually Kansas City. I have just recently learned that Kansas City is my home, but Joplin is still my hometown.

I'm sorry, Joplin. I'm sorry I left you in the dust a long time ago and now I am regretting it. Your people and your memories and even your buildings (now many are lots with piles of debris) are being newly kept by me. Not because you need me, but because I need you. Joplin is not where I live now, but its part of who I am and I have to be willing to embrace that. I'm going to be learning what that looks like over the next days and months and years as I learn what my role is in the restoration of my home town: Joplin, MO.

We were in Joplin...

2011-05-23T23:15:00.000-05:00

...you know, for the tornado. Driving back from visiting my in-laws in TX we had decided to drive all the way to Joplin to stay with my folks Sunday night. Driving up I-44 we heard the weather would be bad. We saw it looked bad. At about 5:10pm we got off I-44 onto Range Line (Joplin's main drag) and drove to my parents house. Its funny, because I told Brian if something happened then I wanted to be around shelter. At 5:15 we got to my parents house. Just after 5:30 a horrific EF4 tornado ripped down the path that we had just driven.

My family lives on the other side of town from the destruction. Our house is untouched and we are all fine. Only the cable is out, which means we didn't see any of the coverage until getting here to KC (just hours ago). Well, maybe we didn't see coverage, but my family and Brian saw it first hand. Once we started getting phone calls Sunday night we realized it was pretty bad. Brian and my dad left the house to check on some friends and their house. What they saw was unpredictable and horrific. Brian gave his shirt to a man bleeding from the head, but not hurt badly enough to get triaged by the ambulances driving around--helped people get things out of houses, look for loved ones, tried to locate neighbors. Many of our friends are not badly hurt, but their houses are not only destroyed, but mostly gone. The town is devastated...

I know everyone has seen many more pictures on the tv coverage, but this is what Brian took with his iPhone walking down the street an hour after the tornado. We came home tonight because there is only so much you can do since its storming there all week. Mostly, I think, they need blood and supplies, including water since we are on a boil alert.

When I have more fully processed that a third of my home town is gone I will probably blog something more emotional, but for now this is all we can manage.

Of course they covet your prayers, especially considering the weather the next few days is looking very unstable. Thanks guys.

peekaboo...

2011-05-14T08:54:00.000-05:00

...we see you!

OK, so we are 9 weeks again today. We saw a strong heartbeat yesterday, but we know that doesn't mean we're in the clear. Technically I guess we're never in the clear totally. We're trying to hold this pregnancy with an open hand. Do you know how hard that is? For me anyway.

The first several weeks were particularly bad fatigue-wise this time, but seems to be letting up a bit already. The nausea, however, is taking a front seat. Whatever, we can deal with that. They did put me on progesterone because my levels were just a bit low, but our OB feels good about how we're doing.

So...yay! Due date: December 18. Merry Christmas to us!

Its a marathon

2011-05-09T10:36:00.000-05:00

Thats the only thing I can really compare motherhood to. My vantage point may be a little different, but I'll bet almost all mothers feel the same way. I am a mother to a beautiful young 2 yr. old who needs my help like a 5 month old. I don't know how long it will be like that. Maybe forever. But you know what? My mother would tell you she is just as much a mother today as she was twenty years ago. I think that is the scariest and most beautiful thing about motherhood. It just keeps going and going and going. The difference in our house is that mostly the going is in slow motion.

Olivia has accomplished, then lost, then accomplished again a lot of things. She is determined like no one I know. I would have well given up by now if I was her. Thats what I mean by slow motion. I know some day Olivia will move around on her own, whether assisted by some device or not, but that day is not right around the corner. Olivia has to fight so much harder and so much longer. Slow motion. No one is rolling over or sitting up or crawling at any moment. There are weeks and months of work that go in to all of these things. And not just her time and work--mine too. Thats what it is to be her mother. To get up every morning knowing that you'll have to get up a hundred more mornings before you might see a difference in her independence. At first this made me sad. Sad that everything has to always be so hard for both her and me. Now, I have come to appreciate and love our life and the truth that it brings. The small things get celebrated with so much more awe and fanaticism when you've been focusing and trying to accomplish them for such a long time. The smallest changes are the biggest victories.

Being a mother--Olivia's mother--has taught me more about life and God and myself than anything else in the world ever would. There are innumerable things I've learned in the past two years that being someone elses' mother would never have taught me. Small things. Little things. Slow motion things. In a world of convenience and and instant gratification in our family we have to take the long view--because at our house its marathon. Thats what it means to me to be a mother.

By the way, I realize that there are no early pictures of Olivia on the blog. So after I dusted off the stacks and piles (well, they were on the computer) this is what I came up with. I like the oldies. So sue me.

Coasting...

2011-05-03T14:58:00.000-05:00

We have been crisis and pertinent information free for the last week---thats why you haven't heard from us. We're enjoying the quiet. Literally nothing is going on. Last Friday we did have an awesome family day on one of the most beautiful days of the year. Unfortunately for Livi, it did not really include anything really fun for her. Unless she thinks Lowe's is fun. We do! Especially when we are picking out new bushes for the front yard after someone (thats me) got a little hasty and dug the really ugly dead ones that were in front of the yard out. And no, we have not actually planted any new ones. That might be a while considering the weather forecast for this weekend. Here are Livi and Brian in the Lowe's parking lot. Can't you tell she's loving it?

I also just got off the phone with her neurologist to talk about the tests they ran in St. Louis. We've already talked about the EEG, but her Dr. says its like her brain is in a fog all the time and we're just trying to clear it up. I didn't get the impression that we should hang on too closely to the infantile spasms diagnosis. She is really more growing out of that than anything and of course, as usual, Livi doesn't exactly fit into any category really well.

Livi's MRI did show some "pretty mild" atrophy--or loss of brain tissue. It could have been there before...it could be due to her heart condition...it could be causing the seizures...it could be effects of the seizures. It just shows that her brain is under stress and the information it gives us does not help with with a diagnosis except that it rules a lot of very bad diagnosis by the lack of severe atrophy. Its "not severe and non-specific". So, we are just plugging away with the new medicine and trying to keep track of how exactly she is doing on it.

Reflecting on being a mother this week. Might let you know how thats going later on...

Different...but the same

2011-04-25T08:58:00.000-05:00

So, we're home now from St. Louis. Exhausted, but home. We did come away with some helpful information, and have already made changes to Olivia's treatments. They are saying that her seizures are officially infantile spasms (which is a really gnarly kind of seizure in very small kids). It, of course, fits Olivia to a "T", but its the first time anyone has really called it that. Its a horrible seizure disorder that leaves most kids very cognitively and developmentally delayed. Sometimes, if you find a medicine that works well you can really increase the chances that your child will develop close to "normal". That being said, we know statistically that since Olivia has been through three anticonvulsants that haven't totally taken away the seizures that our chance of finding one that does now is really low. The Ketogenic diet is a diet used for seizure control as well and has some success with a lot of kids where medicine doesn't work. This is a goal of ours, but we have to get her off one of her medicines in order to do that. It will be a long process. We, of course, will always hold out hope.

Really, more than anything, this weekend has showed Brian and I what an amazing daughter we have. She honestly never gives up. I think I would have by now. Her EEG shows she is not just having seizures throughout the day with normal brain waves in between. She is constantly having epileptic activity all the time. Its like background static that never goes away. How is she even able to do the things she can do now? I have no idea except the grace of God and the resilience He has given her. You can pray for resilience for me--there are days I want to give up. Not many, but after a busy weekend filled with travel and hospital and a busy Easter Sunday this morning feels like a good day to give up. Its Monday. Its dark and rainy. Its almost 9am and I am the only one up in our house. Instead of giving up, I will take refuge in the only one who can truly give it and pray for grace just for the next hour. Sometimes that's as far as I can get.

Thank the Lord that a big shot of grace is coming tonight, weather permitting. My beautiful mother is coming in town with her cape flowing behind her. She is coming to save my day-- at least until Wednesday. What should we do? Nap or shop...nap or shop...I can't decide. Maybe both.

Here is a pic from St. Louis while we were waiting to be discharged. Brian is probably trying to figure out a game-saving play on words with friends because I whipped his tail. This is the benefit of writing on the blog, honey. You can say whatever you want and no one knows the difference. :)

A bunch of letters you might not understand...

2011-04-21T19:26:00.000-05:00

EEG...MRI...LP...

Yes, we are currently in St. Louis for Livi's most recent workup of neurological information. Since 8am this morning she has been having an EEG and that will be done tomorrow morning. EEG stands for Electroencephalography. What essentially happens is they put these electrode things on her head with some super duper bad smelling glue stuff, wrap her head in gauze and tape to keep it on, and at the other end of the wires that attach to the electrodes there is some contraption that sends all of her brain waves to a computer room across the hall from our room. Make sense? Thought so...here is a picture. I call it EEG ponytail...

All those wires are attached to this thing in that blue backpack that transmits the brainwave information. They also are constantly video monitoring the room--yes, I've thought about all the inappropriate things that could be caught on tape, but I figure we can't be the weirdest people who have ever stayed here. I'm sure there are stories.

She has had an EEG several times before, but not in over a year and never over night. Usually they just run them in a lab for an hour or so. The waves can tell them where in the brain the seizures are coming from and sometimes why they are happening. Sometimes they won't tell you much at all. Just depends.

Tomorrow after they let us take the electrodes off we will try to wash all that goopy glue out with shampoo they will put an IV in her and take her to a lab downstairs where they will do both an MRI and an LP before they bring her back up to the room.

MRI is pretty common acronym. It stands for Magnetic resonance imaging. You can do an MRI of basically any part of the body. They will, of course, be imaging Olivia's brain. It takes lots of pictures in cross-sections and allows them to look for lesions, tumors, structural abnormalities. Last time she had an MRI she had no abnormalities, but it could always change, and the parts of the brain are so fluid that one person could read something on the MRI that another doesn't. This could show us where the seizures are coming from (if there is a tumor or something) or what part of the brain is affected (if there is some affected tissue because of loss of blood or something). I'm not a doctor, so don't quote me on all that, but from what I understand that's kind of close.

The MRI lasts about an hour or so, depending. For both the MRI and the LP Olivia will be sedated because she will need to lay completely still for both. We are a tiny bit concerned about that simply because sometimes, when she was much younger and sicker, Olivia would need help breathing while under sedation. They will give her oxygen if she needs it and she should be fine.

The LP might be better known to you as a spinal tap. The LP will look for things in the brain and spinal cord that the MRI can't--the information in her fluid. If she is lacking certain cells or has abnormal ones that can affect how information is processed and exchanged in the brain. They are specifically looking for a vitamin deficiency (B6) which can be known to cause epileptic seizures. Right now she is on a dose of extra B6 just in case because it can't harm her any. If there is a deficiency, they should be able to give her an extra big dose and rid us of the seizures. Wish it would be that easy!

When she is done with all that she will come back up to her room to wake up with us and we can leave. We are planning to stay one more night here in St. Louis in a hotel room since we don't know how long it will take for her to wake up. We could all use some rest before we head home. Hope you enjoyed your science lesson. Here is a picture of Brian and Olivia today...

Trolley Run Survivors!

2011-04-19T21:01:00.000-05:00

So, we did it! Last Sunday we ran/walked the 4 miles of the Trolley Run. It was a beautiful day--cool and sunny. Shout out to Brian, my mom, and Allen, my brother-in-law for running the entire thing. We are so proud of you! The rest of us were lazy and walked. It was crazy busy all morning there and I heard there was a new record of runners-- 11,000 some odd. Way to go CCVI and thank you Kansas City! Here are some pics from Sunday.

Also thought I would post a video of Livi kill'n it on the piano--her new favorite toy. Thanks Nana for such an awesome birthday present!

Some recent entertainment

2011-04-16T20:26:00.000-05:00

Well, the KidWalk finally came! We are so excied and had hoped to use it for the Trolley Run tomorrow, but its just so new for Olivia the way it positions her body she is still getting used to it little by little. We won't feel like a 4 mile walk is the way to break it in.

This picture is from her and I "practicing" this morning. I was practicing putting her in it without pissing her off and she was practicing standing and walking. She is not yet walking independently in it, but we'll get there. She was enjoying looking out the porch doors--grandma says she is waiting for them to get here.

Livi had a good morning today and a good night tonight, but the afternoon was more napping and more seizures than a usual day. Thats ok. Apparently thats why we keep Tugger, our 4yr old boxer around--to entertain us while the kid sleeps. Brian thought it would be funny to play sounds on his phone to see what Tugger would do. There are no words...

Life lessons for mommy

2011-04-12T20:24:00.000-05:00

So, my daughter has really changed a lot since she turned 2. I know it doesn't make any sense, but hear me out...

She is actually sleeping less. 1 nap a day max 4 hrs.
She is not content just relaxing any more. She is making purposeful movements with her hands and fingers to try and manipulate toys or whatever is striking her interest.
She is holding her head up ALL the time without letting it lag backwards. Up til 2 weeks ago she would let her head lag back all the way if she was tired.

We have so much to be thankful for in the past few weeks. Watching her change and develop is wonderful, but part of it is also hard. Sure it was difficult to see her make no intentional movements, but I think we got used to it. Now, it is so hard to watch her try to do things that her body is not letting her do. She is learning how to control her appendages but it is taxing because the seizures have confused her brain about how to move the rest of her body. Its painful for me to watch her struggle and get frustrated when she can't tell me what she wants or can't get it for herself. Its in those times she looks the most "disabled" and I'm ashamed to admit that is difficult for me.

The only feeling overriding that one is the pride I feel that she never, ever gives up. Monday in her vision therapy session she worked for 30 minutes to pick up and put down this light stick. It took sometimes up to 2 minutes for each part of the action, but she did it. I'll have to say I think I gave up before she did. My patience was tried and I kept waiting and waiting, fighting the urge to do it for her. But she proved me wrong. She can do it, she just needs some patience and support from me. Monday night we went on a family date to dinner and Livi sat in her chair at the table with us. I laid some toys out on the off chance she might want to play. Play she did. Pick up things, put them down, move slowly to touch it with the opposite hand, put it down, find it again, pick it back up. There was a lot of that. This picture is me holding the toy, but she wanted it back--you can tell.

New "firsts"

2011-04-06T13:52:00.000-05:00

First of all, I should probably apologize for the lack of effort on my part to download the new Blogger stuff which allows putting these pictures up much much easier. Also, it helps when you're not too lazy to download them instead of just "dragging" them to the desktop. So, this is me apologizing. I hope these pictures turn out better. This is what Olivia and I did this morning. It was her "first" not mine, just to clarify that point. These are in order of mommy being more and more confident in my kid's strength and ability. They range from weenie to "doesn't my kid rock?"

Also, please excuse my hair in that picture. I didn't wash it this morning because my friend Ang and her kids and us went walking. And it was windy. You get the picture. Literally. Windy, greasy hair. Ick.

I am trying not to look worried in that picture, but Olivia can feel it, I guess. She looks a little concerned.

Kill'n it! Actually, what you can't see is the three jackets I have stuffed behind her tush to keep her from sliding. But she did hold herself up there for a few minutes. I was SO very proud.

Its easy to let our fear of seizures (which could have either gotten or close to or completely toppled her out of the swing) control the things we do in life. I am learning that being wise and being afraid are not the same things. I can trust the Lord, and my daughter, without trying to navigate every situation perfectly. We WILL be going to park more often, including the little 2 ft pool they have at this one. Bet you can't wait to see me with this hair in a swimming suit!

The BIG 2!!!!

2011-04-04T11:29:00.000-05:00

No, not the last 2 NCAA basketball teams that play in the championship tonight, though we will be watching that with some friends. I can't believe I'm saying this, but: Olivia turned 2 yesterday! Can you believe it? We had a party for her with some friends on Saturday and had a wonderful time! I, of course, took very minimal pictures, but managed these few.

What better way to show your 2 year old attitude, Olivia, than to wake up from your nap an hour early so you are cranky and tired when 25 people show up to celebrate your life?

This is Olivia and her friend Jude. Jude was born premature and has been through a lot too, but is cruising along and doing great! I don't know if he is trying to get at Livi or the cupcake.

And then there was Sunday...a busy day. It was officially her birthday, and we were at church for meetings and stuff from 8:30 to 3. For the last hour and half we convinced our friend to watch her for us during the meeting and Olivia did a terrible thing that resulted in this...

I think she is saying, "Who, me?" Yes you. This is partly my fault. I guess I thought we were past the time when I would have to have adequate extra clothing in the diaper bag. I guess not. This is what was left to wear after she pooped through both the shirt and the pants she was wearing.

Seriously? What are you mad about? I had to clean it up!

The week of Tugger

2011-03-31T10:08:00.000-05:00

So, this is him--our Tugger. Cute, isn't he?

Except when he is doing this or any number of ornery things he did this week.

We haven't been able to do anything without him following us around. As I type this he is laying on my feet. Pitiful. Just like someone else I know. She had just "woken up" from her nap for a playdate with our favorite dude T-Mo. Besides being a younger man (9 months old) and too eager to see her (pants and holds his arms out) they are a cute couple. I guess Livi doesn't feel the same way. This is what she did the entire time they were over, including while he was grabbing her feet.

Also pitiful--my husband. He was reading to Livi one night before bed--our favorite book "Mr. Brown can moo, can you?" Apparently Brian can very well, but not that he wants you to see. I tried to be stealthy about taking the video. Did not work...Apparently even Brian has a threshold for showing off...

As a side note: we should be getting the KidWalk within the next 2 weeks, which would be great because then we could have it before the Trolley Run. Just in time.

Finally some relief

2011-03-23T19:34:00.001-05:00

After basically a week of people (mostly Olivia) being sick in the house, I think we are officially getting back to normal. She had, they think, a stomach virus, but days after other symptoms left was still having some fevers. She has been a few days without, so we're hoping that means its over. We're getting closer to normal anyway, because Livi is, as I type, supposed to be sleeping after a long day and a very short afternoon nap. Yet, what do we find? A little girl playing stealthily in her crib as to not draw attention. These are from today courtesy of Aunt Mal who is visiting at the end of her spring break. We are so happy to have her here!

Brian and I also had a great night last night. We, for the first time, were able to attend a CCVI parent group. The topic-local resources- is timely since we are surely losing our medicaid as her secondary insurance in two weeks...unless, of course, there happens to be some inexplicable reason to regain it as what happened last year. We can always hope. At the very least Children's Mercy financial aid kicks in and pays for the rest of everything there--meds, therapy, hospitalization, etc... Amazing, isn't it? All we would be stuck with is what is left over after our primary pays on her oxygen and food and monthly supplies delivered to the house AND medications and services from St. Louis Children's. I will also be knocking on their financial aid's door soon begging.

I digress, so we had such a good night last night because we met some great families with kiddos just like Olivia. One mother actually had a son about 6 months older than her with the same general conditions rolling around in a Kid Kart in the same exact color! They met in the hall and exchanged waves before we left. We love our friends and the support that you all are, but it is something different to see someone whose family looks just like yours. We hope to be running into them again soon. Also, during the meeting Olivia played with the teachers and other kids in childcare. We have NEVER left Olivia with anyone but a handful of trained babysitters. Yet, these people were totally qualified and made us feel so at ease. What a blessing both Children's Mercy and CCVI are to us. We can only hope to one day say an appropriate "thank you". Speaking of, visit the last post if you haven't so you can either run in the Trolley Run with us or donate in Olivia's name.

And then there was one

2011-03-16T15:36:00.001-05:00

On the most beautiful two days we could possibly have this early in the year in Kansas City this is what is going on...

...the same thing is happening next door in a smaller room in a smaller bed--luckily. Yesterday, after a very nice outing with my daughter to Sonic and then to World Market while sitting in the driveway talking to her new neurologist Olivia randomly started screaming. That happened for an hour and once she had worked herself up into a fever we took her to the ER. Fever went down, nothing on the blood or urine or x-ray. What could it be? Since she can't tell me, or really even point to body parts at this point we were down to vague guessing. But, when Brian called me and told me he was coming home this afternoon with a bad stomach ache and then developed a temperature we can start narrowing the guessing.

Olivia is finally resting better now than last night or early this morning (luckily for me. I know people don't care what your house looks like, especially family, but Brian's parents will be in town this weekend and I just CANNOT have the house looking this way). Brian is finally sleeping too after having to be heckled to eat crackers, drink plenty of liquid, and take medicine. At least I can do that for him. I hate having to make Livi suffer because she is too little for medicine. 24hrs down, however many to go.

I did manage to sneak outside and get a few minutes of some vitamin D that is pouring all over this city today. Absolutely beautiful!

And, my talk with the neurologist, in case you were wondering, went well. Livi has been doing a bit better seizure-wise since we doubled her vitamin B6 dose (yes, vitamin). Now, I am expecting a call any day from someone at St. Louis to schedule an overnight EEG, and an MRI and LP (spinal tap). The only scary thing is Livi being sedated for the MRI and LP, but she is the strongest she has ever been. Guess we should just trust. They say a couple of weeks for that to be scheduled, so should be making another family vacation memory in St. Louis here pretty soon. Yay?

Our CCVI Preschool Visit - A Fatherly Interlude

2011-03-13T11:22:00.000-05:00

So, I (Brian) apologize for the delay. I had planned on posting a few weeks back, but as is generally the case in most of our lives, my well-laid plans got shuffled a bit, so here I am three(?) weeks later than I had planned. Better late than never though, right? (Or is that just something that people who are habitually late say to make themselves feel better?)

At any rate, you're not here to read my feeble philosophical musings. As Kelly alluded to a few weeks back, we visited the Children's Center for the Visually Impaired (CCVI), where Livi will attend preschool in the fall. While we were there we had the opportunity to observe a classroom. There was a mixture of kids with special needs and kids without special needs sitting on the floor for circle time, practicing saying their names, days of the week, animals, etc. What was really amazing about this experience was watching the teachers and therapists interacting with the kids with disabilities. Now you have to understand where I am coming from here. As the proud daddy of a little girl with special needs, it bothers me sometimes to think that because my kid has special needs that people are nervous about treating her as a normal kid.

However, this was not the case in this classroom. As I watched the teachers interact with the kids who have special needs, they didn't coddle them at all or accept the "good ol' college try." No, not here, no way. There was a little boy who couldn't say his name, so they used a switch that the teacher recorded his name on so that when it came time to say his name, he could hit the switch. Another kid seemed to lack trunk strength to sit up straight and the therapist sitting with them gave support, but was making this kid work. Another little girl was responsible for placing the date on the velcro calendar. Instead of allowing her to place it anywhere and just say good job (because that's what you say with special needs kids, right?) the teacher worked with her to show her the right place and didn't stop until the girl placed it in the correct square.

Maybe this sounds like they are pushing the kids too hard, but my heart melted and I was moved to the brink of tears as I watched. See, our house is essentially a therapy gym and we go to one every week. If our daughter doesn't get pushed sometimes, she is fine with being coddled, snuggled, and allowed to take a nap. Watching this classroom made me excited to send my girl to this school in the fall. It also made me thankful for the people (from various organizations) who have challenged Livi and pushed her to where she is now: Sherry, Michelle, Andrea, Janelle, Ashley, Kathy, and most importantly, my wife.

If you haven't joined our team yet for the Trolley Run, please do so here. You can join the team to run or just donate. The funds that we raise will benefit CCVI (Click here to see how). There are many families who need the services that CCVI provides but just can't make it happen for one reason or another. If it helps, think about it this way: the money that you give is creating space for kids with special needs to learn and connect with other kids their age in ways that might not happen otherwise.

As an aside, if you need a little comic relief, I will be attempting to run in the Trolley Run. I will set the line for how far I make it before I start walking at about .25 miles. It is gonna be a long four miles at that pace.

fun with daddy!

2011-03-12T10:10:00.000-06:00

Ash Wednesday Eruption

2011-03-10T09:32:00.000-06:00

So, I don't have a picture for this post. It just seemed rude to get Brian to take an iphone picture during the church service. Nevertheless, I just have to throw my daughter under the bus because I don't get the opportunity very often...

After having a rough morning (seizures) yesterday Olivia had PT in the pool and did great! Its like magic treatment for her. I was there alone getting her ready after the pool and rushing to church for a 5:30 Ash Wednesday service. We got there right on time and snuck in the pew with our friends. She coughed a few times (making, of course, a huge racket in the quietest times in the service) and we had to feed her, so you could hear the low hum of the pump and finally the beep when it was finished. The dagger, though, was towards the end of the service. My kid, who is always asleep and never disruptive put the cherry on top of the evening by ripping the loudest and foulest smelling fart ever during a quiet moment. You would think a row of adults at church could hold it together. We couldn't. I felt SO disruptive, but the sound was not the worst. I literally had to hold my breath for almost a minute. Oh, Olivia. Is this what you are learning while daddy babysits?

Don't want to spend my whole life waiting

2011-03-08T09:32:00.000-06:00

Thats what I feel like we have been doing for the past few weeks. Just waiting. On everything. After the second miscarriage a few weeks ago I had some (understatement-- a lot) of blood drawn to test for auto-immune disorders. I expect that everything should be fine. Lord knows we have learned not to expect anything in this house before it happens. Should be hearing back later this week about that stuff. Taxes--no explanation needed. Livi's Kid Walk is on hold right now because the paperwork is stuck in outerspace somewhere (outerspace being the insurance companies). And truly the most frustrated waiting is this down period with Livi's seizures. They are at it again and it seems the last two weeks have been especially difficult. Generally this means more medicine and more sleeping. Now, after having put a call in to our "new" neurologist in St. Louis just a second ago, I am waiting to see what she wants to do. Up old medication? Try new medication? Call our neurologist here?

Even though we shouldn't need constant reminders that truly only God is in control of things, I do. Any second I can snap back into "I run my own life by my own power with my own will" attitude. I don't think God allows Livi to have seizures just to catch my attention. Obviously there could be a million other things that would do that, but we only understand who we are in relation to who he is when we have nothing else. This week I feel as if I have nothing else to count on. And I don't. He shouldn't be my last resort. He is the creator of the universe and He loves us. He should always be my first resort, but my sinful heart clings to everything else until it falls away before I look for him. This is a painful place to be, but a good and beautiful place to be.

Livi's finally getting ready for her nap. Its going to rain all day. Sounds like the perfect time to wait.

overachieving for a tuesday

2011-03-01T19:19:00.000-06:00

So, I definitely worked out twice today. Just trying to make up for lost time. Since I was not actually making it to the gym, the membership fees were just pissing me off. So, instead, we bought a treadmill from some friends. I actually ran a mile today. Its been an amazingly long time since I've done that--glad to know I still can. Then, it was so nice that Olivia and I spent the afternoon walking around the park.

I actually have pretty vain motives for working out twice today. Ready for it?

This is where we are spending our vacation with my family at the end of the summer. I NEED to look not awful in a swimming suit.

You may be thinking, 'hey, I recognize that house.' And you might. Technically it is the house used in the movie 'Nights in Rodanthe' with Richard Gere and Diane Lane but they relocated it to further back from the water. Its definitely still on the Outer Banks and pretty much right on the water, just not IN the water. I look at that house and think ' who the hell is going to be carrying Olivia and all of her crap up all of those stairs?' But then I remember, there are eight of us. We could employ some help, I bet.

If anyone in KC ever wants to go walking--call me. I need to lose some lbs before this vacation.

We're home!

2011-02-25T19:14:00.000-06:00

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.

Down, but not out

2011-02-24T11:14:00.000-06:00

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.

Home sweet hospital?

2011-02-23T12:16:00.000-06:00

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.

To post or not to post...

2011-02-21T14:24:00.001-06:00

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.

While mommy eats lunch

2011-02-11T13:41:00.000-06:00

...and a little of this...

2011-02-10T13:53:00.000-06:00

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!

Thawing out

2011-02-08T20:20:00.000-06:00

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.

Bare Necessities

2011-01-31T15:38:00.001-06:00

Come on, people. Its a classic. And its been running over and over in my head. So, here is my present to you. Learn it. Sing it. Love it. Thank you Jungle Book and Walt Disney.

You know how you found out what is really important to you? Your husband is at the store hours before the storm starts which will bring a projected 10-13" of snow. He asks you what you need for the next few days. What do you say? I'm a sensible girl. So I said...

D batteries for the flashlight in case we lose power (we were supposed to get ice too)
plain bagels (because my stomach has hated me lately. this is breakfast and dinner)
caffeine (which for me is pepsi--just can't do the coffee thing. again, the stomach)

Things that also came home with him...

individual packaged toblerone (the one kind of chocolate he knows I like)
habanero BBQ almonds (you guessed it--not for me)
tylenol (is he trying to send me a message? does he think he'll need this after 2 days at home?)
de-icer (more) and another scraper. (i probably lose 2 or 3 every winter)

Are these the things I can't live without? Close. Very close. The other necessities of life for me are British Breakfast Tea (which we stocked up on Saturday), magazines (my Good Housekeeping came just the other day), and books (there are three sitting in front of me right now. I'm just trying to keep up with Brian. It can't be done--even by an English major).

So, what about you? Lets hear from the peanut gallery...what are your bare necessities?

Dang you, springtime jitters

2011-01-25T11:31:00.000-06:00

I know its still January. I know. But my heart is ready for April. I feel like I fight back the springtime jitters earlier every year. Perhaps the last two days of blue sky that followed the last two months of gray is causing the problems. I have a little nook at the top of our stairs where I adore sitting in the mornings--reading, writing, whatever.

I use it so often it has become like every other room in my house--messy or "lived in" as I prefer.

And, besides writing on the blog this is what I am doing up here now. The midday snack of champions. Do I like throwing myself under the bus? No, but thanks to jami I am trying to be more transparent, but with discretion, for your sake.

Two days ago out the window all I saw were icicles weighing down my gutter. Yesterday they were all dripping and a few fell. Today--no icicle in sight. Delightful! Whatever the cause, my springtime jitters will not be stifled. The last 24 hours I have started one house project (sanding the banister to repaint and carpet--whenever) and thought of a million more I am ready to get working on. Already I can tell I am biting off more than I can chew this year.

Livi's CCVI (Children's Center for the Visually Impaired) teachers just left. Now I have a million and one ideas for how get her to learn things on the computer while I am cleaning/cooking or doing any number of very domestic things while wearing an apron. (giggle) The problem is, I have to create them all in PowerPoint. Awesome? Yes. Time consuming? Yes.

I have also considered how early is too early to start my herb garden--indoors of course until its warm. I know. It is too early. But there's nothing wrong with planning, right?

And (yes, there is more) my daily emails from zulily (this totally awesome website with discounted goodies for kids, moms, and women) has now yielded two pairs of sandals for Livi--one with the squeakers of course, and since this morning one pair of flat-like-sandal thingies for me.

All of this I did while dreaming of City Market on Saturdays. Yummy. Too much springy thingies too early? Probably. But I honestly can't help it. Guess spring will either have to come faster or I'll just have to live in my delusion for a few more months.

the valley is the place of vision

2011-01-16T17:28:00.000-06:00

I realize that lately in our blog posts I have begun to misrepresent myself and this family. There are alot of things to be grateful for in our life, but that is mostly what I share with you. There are hard things too, but its easier for me and easier for you if I just don't bring them up. Just as a warning, I am going to bring some of them up.

While we are very excited about the new wheelchair Olivia will hopefully be receiving in the next few months, and excited about the Trolley run and about all the new things she is doing in therapy, there is always another side. About a month ago Olivia started having longer seizures of a different kind. They are still a little scary to us because she stops breathing for a few seconds, but sadly we have gotten semi-used to them by now. She was only having them every few days, but this went on for the whole month. Eventually we called her neurologist and they increased her medicine last Monday. On the note of things to be grateful for, we have not seen another long seizure since then (not that we won't). But Olivia also has (I presume from the medication increase) been sleeping the majority of the day--about 18-20 hours. While a lot of moms wished their kids slept more, this isn't a relaxing time for me. She is sleeping, but I know why and I spend that whole time worrying and thinking about her future rather than washing the dishes or doing laundry or anything productive.

It has been a hard week for us. The middle of the day, especially if we don't have plans, I find myself sitting and thinking--becoming discouraged. And this is really what I wanted to tell you: that this particular reading has been giving me a lot of hope. Its from a book of writings by the Puritans who focused a lot on meditation and prayer. Actually this particular writing is in the introduction. I haven't gotten past it, because every time I feel discouraged this seems to bring me back. I hope it encourages you too:

From The Valley of Vision

Lord, high and holy, meek and lowly,

Thou hast brought me to the valley of vision,

where I live in the depths but see thee in the heights;

hemmed in by the mountains of sin I behold thy glory.

Let me learn by paradox

that the way down is the way up,

that to be low is to be high,

that the broken heart is the healed heart,

that the contrite spirit is the rejoicing spirit,

that the repenting soul is the victorious soul,

that to have nothing is to possess all,

that to bear the cross is to wear the crown,

that to give is to receive,

that the valley is the place of vision.

Lord, in the daytime stars can be seen from the deepest wells,

and the deeper the wells the brighter thy stars shine;

Let me find thy light in my darkness,

thy life in my death,

thy joy in my sorrow,

thy grace in my sin,

thy riches in my poverty,

thy glory in my valley.

I realize that to a lot of you this may sound crazy. And maybe a while ago it might have sounded crazy to me, but living through the things we and lot of other people have lived through, you understand that the things you see immediately are not the only things that matter. Sometimes, the things that matter--the hard things--only come when you cannot be any lower. These truths both sustain you and are the song you sing throughout the rest of your life. For the first time you can see how all those paradoxes above are not only so very true, but not actually paradoxes at all. For me this week: there can be and is joy in sorrow. Maybe not in the way people conventionally look for it, but in a special way that takes the life of Jesus to understand it.

"Someday" may come sooner...

2011-01-13T11:18:00.001-06:00

Do I think about a day when I don't have to heft Olivia around and she is moving on her own? Sure. Do I think about it being anytime soon. Not really. Not until yesterday, anyway.

You'll have to excuse me, I ball like I baby everytime I talk about it still, but here it goes.

Some of you might remember the 'demo' we were going to try out at therapy last week. Well, it didn't happen last week, but yesterday we got a chance to see how Olivia looks in a Kidwalk. Then I knew if we were lucky enough to have one of these walkers/wheelchairs 'someday' would be a lot sooner.

It looks ordinary enough, but looks are deceiving. It is a combination wheelchair (with the seat folded out) and walker (with the seat folded in). I cannot explain it, but you will have to see the video. Please take the time to watch it. You won't believe it. Imagine my girl prancing through preschool, church, or our front yard this summer. She'll be such a hoot! I believe my mother-in-law said it best when she said, "Look out, Tugger" (our 65lb. dog.)

Kidwalk video

Lace up your runnin shoes...

2011-01-12T12:13:00.000-06:00

If you are a Kansas City native, you have probably heard of this race before, but you might not know why they run it. This race goes entirely to benefit a Kansas City organization called CCVI. They are a wonderful organization that works with blind and visually impaired children through many programs including in home teaching and therapy and an on site preschool. Olivia is currently part of their infant program, which means we have a teacher in our home once a week. In the fall, we plan to have Olivia attend their preschool. Olivia is not blind, but her onslaught of seizures had impaired the path that information takes from her eyes to her brain. In essence, her eyes see fine what is in front of her, but her brain often misinterprets it or doesn't interpret it at all. Due to their teacher (thanks, Kathy!) Olivia has made great strides in her visual functioning. Now its time for us to try and give back.

We will be walking/running in this race as a family team and there are two ways you can help us. If you plan to be in KC on race day and want to run/walk then you have to register with our team. We would LOVE to have you. The registration fee is $30 pre-race. If you cannot attend, you can still help us by raising money. Our team goal is set at $1000, but we would LOVE to raise more. You can also go to our team page, but instead of registering as a participant, you can donate.The buttons are pretty self-explanatory. Please pass this information on to whoever you think might be interested in giving.

Here is the link to our team page (our team name was chosen by Grandpa Don- way to go!)

We would really love your help in raising money. This is the easiest way for CCVI to give scholarships to children and their families for in home care or preschool. The money can also go to supplies or field trips. CCVI does a ton of good in this city, specifically for us as a family and we want to say "thank you".

If you have any questions please feel free to email me: kelly.s.yocum@gmail.com

For information on the run go to their website: www.trolleyrun.org

Finally, some pics

2011-01-10T10:12:00.000-06:00

We've had a busy couple of weeks, but here is a small glimpse of what we've been doing. This is Christmas Eve with Livi all dressed up. I LOVE this picture of Olivia. Beautiful!

So, I was hoping to be able to post that Arkansas was the winner of the Sugar Bowl. Not so. But we had a great little get together to watch with some friends and I got to use my razorback cookie cutter again this year.

I think I took this last picture sometime last week. I just think its funny. We must be getting ready to do her breathing treatment. No matter how much we do it she doesn't ever get over it. Apparently, right?

I also finished that book, but I will wait to give my official assessment in another post so you don't tire of me. Suffice it to say I respect this woman and the ferocity for which she loved and advocated for her son. Thoughtful. Inspiring. Emotional.

New Book

2011-01-08T19:22:00.000-06:00

Ok, so I swear I have some really great pictures from the last few weeks but my computer is conspiring against me, so despite my many attempts to put them up on the blog for you, they will have to wait for another day. But I do have something I want to tell you...

Today, on our very overdue date, Brian and I wandered into Barnes and Noble on the Plaza--which is convenient because we happen to have gift cards there. Thank you, Santa. I needed to get a planner, but I also wanted to check the "children with special needs" section which I am usually disappointed by. On all other occasions the total of the books in this section address mostly ADHD and Autism Spectrum Disorders. All important information, but not helpful for our specific situation. Today, though, I found a welcome change--I think.

I bought a book--memoirs of a woman who was a mother to special needs boy much like Olivia. He had Cerebral Palsy (probably the closest diagnosis we will get to Olivia), a seizure disorder, but he was also quadriplegic. I was so happy to see it, like it was a story about a family member or something. I had to buy it.

I think Brian thinks I'm crazy. Of course the book is going to be really sad. The boy, Jesse, died in his sleep when he was 17, but the story is about his life. To me, the sad parts are worth wading through emotionally to enjoy the laughs, and the back jacket promises plenty. I hope it feels like a close friend. We will see. I'm sure my all empty day tomorrow will allow for plenty of reading/crying time.

Oh, here's the link: Knowing Jesse. Also, good luck to Brian and our friend Wes who will be freezing their tushes off at the Chiefs playoff game tomorrow. I was more than happy to give up my ticket and keep my warmth.

Headlines today

2011-01-06T08:36:00.000-06:00

I never, and I mean NEVER do this, but I am going to post the latest article about Dr. Wakefield, the main Dr. in the studies of the link between vaccines and autism. I am not stating an opinion about it, or encouraging others to do so, especially on the blog, but it is such a big story and huge in the medical community, especially with the parents of special needs children. Please just read it and try not to leave anything nasty in the comments. Informational purposes only...

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Christmas overview

2011-01-02T08:59:00.000-06:00

I have done a terrible job updating the blog and I did an even worse job taking pictures over Christmas. I do have a few and you can have them later.

The last two weeks have been a whirlwind. Brian had his final for his class last semester about the time he was asked to preach at our church for the first time the day after Christmas. We got to spend some time together, but my husband the studier just couldn't concentrate on Christmas 24-7 until after the sermon was over. He did a wonderful job and you can listen to it if you want by going to the church's website www.redeemerkansascity.org and then clicking on the resources tab at the top. The link should be there with his name. We are so very proud!

The few days before Christmas Nana and Papa came from TX and we had a wonderful time! We mostly concentrated on relaxing and having some fun which was a wonderful change of pace for all of us! We had such a good time with them and hated to see them go!

24hrs after they left we packed up and headed to Joplin to see my family and so that I could be in my best friend from high school's wedding on New Years Eve. The whole week was a blast for me, but Olivia and I were the only one's who escaped whatever sickness this is going around. Brian even had a fever--which is like death for him because he NEVER gets sick. He was a real champ about it, though, which is good because I was too busy going to parties and rehearsals to take care of him.

We just got back home last night and its back to the real world already. I made my very unpleasant to-do list for the week. Mostly calls to insurance companies and stuff. I hate that, but alas, it must be done.

Towards the end of the week I will probably post some pictures because Olivia is scheduled to demo some new adaptive equipment on Wed and maybe Thursday. We are really looking forward to a way to make walking easier for her and for me too!

Hope everyone had a wonderful holiday!

Breakfast with Santa

2010-12-21T14:03:00.000-06:00

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

2010-12-11T10:56:00.000-06:00

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

2010-12-07T14:27:00.000-06:00

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

2010-12-01T12:25:00.000-06:00

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

2010-11-29T14:17:00.000-06:00

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!

2010-11-17T07:13:00.000-06:00

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

2010-11-07T20:48:00.001-06:00

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

2010-11-07T20:43:00.001-06:00

Olivia's Birthday Gift to Brian...

2010-10-26T15:30:00.000-05:00

...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.