Tuesday, November 29, 2011

Guest Post...Well Not Really

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

Friday, November 25, 2011

Feliz Thanksgiving-o

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?

Monday, November 21, 2011

Hello, again, dear 'ol friend

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.

Wednesday, November 16, 2011

New "problems"

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.


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.

Saturday, November 12, 2011

Ramp follow-up and weekend pics

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!

Wednesday, November 9, 2011

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

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.

Monday, November 7, 2011

Our big news

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.

Tuesday, November 1, 2011

2 things to celebrate!!!

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.