Thursday, December 29, 2011

See, what had happened was...

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!

Monday, December 26, 2011

Our Christmas Miracle

Details about how everyone is doing coming soon.

Tuesday, December 20, 2011

Our Bittersweet Week

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 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 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.

Tuesday, December 13, 2011

...And the fun continues...

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...

Sunday, December 11, 2011

Literally catching up with us

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.

Monday, December 5, 2011

Embracing "the village"

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.

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 ( 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.

Wednesday, October 26, 2011

Happy Birthday, baby!

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...

Tuesday, October 18, 2011

No more Target toys

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. 

Thursday, October 13, 2011

Room for one more?

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?

Monday, October 3, 2011

No pants afternoons

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!

Friday, September 23, 2011

Get it together, woman

...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.

Wednesday, September 21, 2011

Not gonna lie...

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.

Tuesday, September 13, 2011

Fall Fabulousness

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...

Sunday, September 11, 2011

Quick note

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.

Friday, September 9, 2011

One guess where we are

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.