The week of Tugger

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

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

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

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!

Ash Wednesday Eruption

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

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

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.