Monday, May 31, 2010


Taking pictures of you is always a challenge. As beautiful as you are, nobody would ever describe you as photogenic. One of the biggest problems is your bad eye and how it glows in the flash. No amount of red-eye reducer can fix that. But we try anyway. And try. And try. And of course, whenever we get a great one of you, someone else isn't ready. So here are the best of our Memorial Day pictures 2010.

First we tried taking a picture of the three of us in front of our little flag. Bubby tried to eat grass sitting next to me, and was too squirmy in my lap--he was handed off to Daddy.

Then we tried to get just the two of us. Half were blurry, some you weren’t looking at the camera, others I was talking to Daddy. There were lots of little bugs in the grass, so we moved to the porch.

This one is precious of you, but I wanted to see the flag on your dress. We would have kept trying here, but we were almost eaten alive by mosquitos. Plus, our neighbors were out and Daddy was having to make all sorts of farty noises to get you to laugh. A little awkward. Inside we go.

At this point nothing was funny to you anymore. You were done, so we gave up.

As I was swinging you up towards me, Daddy snapped this one. Just being ourselves. Probably the best of the bunch.

Later Daddy gave me a dip kiss in the kitchen and said you were thought it was funny. Daddy sure does love you!

Thursday, May 27, 2010

A Dirty Business

We had a close call last night, but it all turned out alright. After having a great day with very little vomiting, you began throwing up at 1am and didn’t show any signs of letting up. That’s how it always starts when you get these little episodes. Last March you became so dehydrated that it landed us in the ER and PICU for 5 days. Fortunately, we discovered Zofran since then, an anti-nausea med usually prescribed to chemo patients. I have tried giving it to you daily to reduce your regular vomiting, but it hasn’t been successful. It does, however, seem to stop long spells of vomiting. So about 1:45 we gave you the Zofran and you were finally able to rest. Your heart was racing with a rate of about 200 beats per minute but by stopping the vomiting and pumping your tummy with fluid, we were able to keep you hydrated and prevent your O2 levels from desating. I am pretty certain without the Zofran it would have been a repeat of last time.

Daddy woke up early this morning for work and checked on you. You felt much better, but had an enormous dirty diaper that, even though taken straight outside, made the entire back part of the house smell for the rest of the day. I wonder if that is the culprit behind these episodes. SLOS kids often have issues with constipation, although you don’t seem to at all. In fact, you are pretty regular, but if not your stools are more likely too loose instead of too firm. Still, maybe every couple months you are just too much backed up and you have to get it out. Pooping has been known to make you sick, something about the negative pressure. And last March, right as we were about to leave for the hospital you had the same type of dirty diaper, and from that point on you didn't throw up again until right before we pulled up to TCH (and it was all downhill from there). Maybe if we were to do an enema every couple months we could prevent nights like these. I definitely think this is worth looking into…

Tuesday, May 25, 2010

Laughing in the Rain

You did so great in your physical therapy this morning! Mrs. Karen brought you a couple new toys, your favorite being a rainstick. From the first time you heard it you began to crack up. We put it in your hands and you held on tight. We showed you how to shake it and pretty soon you were doing it all by yourself! You then brought it to your mouth and even briefly held it with both hands at the same time. I was so proud of you! And it thrills me to discover new things to make you happy. Your smie is gorgeous and your laugh infectious. I don't completely understand your sense of humor, but I thank God every day that you have one!

Tonight, when Daddy scooped you up to put you to bed, you held on to that stick with a death grip until you were all the way up in his arms! It made us laugh because the weight of the stick made your arm swing beneath your body, but you were not going to let go! So rarely do you hold things, let alone with that much strength. Daddy's first thought was that somehow it was stuck to you. We joked about tucking it in bed with you but decided to just stick with Lambie instead.

Monday, May 24, 2010

Fresh Air

This weekend we were blessed to stay in a beautiful lakehouse in Mount Vernon, TX with Aunt Paula and Reiner. We went up for a three day weekend, and could have stayed for 3 weeks! There was no TV, no internet, not even cell phone service, so our only option was to relax. Our room was huge, with our own bathroom, entry onto deck and even a side room for you and Bubby to sleep in. The weather was perfect—mostly sunny and warm, but a wonderful breeze and very little humidity. The house was huge with enough rooms to sleep 18. It sat right on the lake with gorgeous views and a huge screened in back patio. We loved that back patio. From the time we woke up in the mornings till we went to bed, that is where you could usually find us. So often we are limited by how much time we can spend outdoors, since you are so sensitive to sun and wind, sunscreen and bugspray. This weekend you were perfectly comfortable laying on the couch and listening to the water lapping right below us. But as always, our favorite time spent was in our room, during the earliest hour, all four of us piled in bed.

You seem to thrive on vacations. I think being outside and having our undivided attention does wonders. Not once did you throw up while we were there. In fact, you went over 72 hours without being sick, the first time being on our way back home Sunday night. Maybe we should buy a lakehouse. ;-)

Overall it was a fabulous weekend, and we really hope to be able to do something like it again sometime soon.

(On a side note: As I was trying to think of a title for this post, Daddy came up with “No Bugs, No Air, No Problem”. Then he realized.."no air? That causes all sorts of problems!" He quickly revised to "No Bugs, No Sun, No Problem". He makes us LAUGH!)

Thursday, May 13, 2010

Million Dollar Baby

We got the letter from TCH. They are forgiving a huge percentage of our debt, waiving tens of thousands, but still leaving us with several thousand due within 6 months. I was optimistic that because of our insurance situation, and because you have will have Medcaid to cover any future medical care,they would forgive it all. I am trying to be grateful and I do realize that they were not obligated to write off any portion of the bill. But I am confused at how they managed to look at all of our finances and decided we would be able to give up a fourth of our net income over the next half year, especially in this economy. We could appeal, but I don't know what information I could give the that they haven't already seen. And I am annoyed that we are even in this situation--this is why we paid for insurance. It's not even about the money as much as the hassle. I have gotten a couple other invoices over the last few weeks from doctors trying to collect money from us since they haven't been able to contact our insurance company in the last two years. So I have to call them, explain the situation, ask for a self pay discount, make copies of the invoices to give to the HR lady to give to the lawyer that I am convinced doesn't exist, and then pay the bills anyway.
I still have complete confidence that God will provide the money, although part of me feels like I could come up with better ways to spend thousands of dollars if God dropped it in my lap. We could pay off our car, build up a savings, make repairs to the house, be God's hands and feet and give it to someone in need. But when I think that through, I realize how ridiculous that sounds. Of course there is nothing better I could have done with that money than pay for your life saving medical treatment. That is worth every penny we earn. So Daddy and I will pay the bills cheerfully, and as quickly as possible, and pray that any other outstanding claims will soon come to my attention so that we can be done with this stage of the journey and move on.

Saturday, May 8, 2010

Big Girl Bed!

I have been excited about this for a long time, and it has finally happened. You have a big girl bed! Your crib converts into a full size bed, and I didn't see any reason why we should wait until you were bigger to upgrade. In fact, there are plenty of good reasons to go for it now:

1) Cribs are designed to keep babies well contained once they get mobile. You aren't going anywhere, any time soon.

2)Since you are usually in bed from about 8:00pm-8:00am, you spend about half your life on that mattress. And crib mattresses aren't the most comfortable. Plus, you can't just roll over to change positions and give one side a break. Daddy and I make a point to flip you over, but only if we hear you wake up.

3)Less sheet changes for us at night. If you vomit, we can move you to the opposite side of the bed and you will still be feet away from the wet spot.

4)I can crawl into bed with you. It is rare, but there are times when you are so sick, the only way any of us can get rest is if I bring you into bed with us. But to do this, I need to disconnect your feeding pump, suction, oxygen (which is NOT easily portable), and pulse ox monitor to bring into our room and set up. In those moments I have always thought how much easier it would be to join you in your bed. Several times you and Daddy or I have just ended up on the floor in your room. Not ideal for anyone.

5)It makes us happy.

I knew your new layout would make me happy; rearranging furniture always does. I had no idea how it would tickle you! As soon as we put you on your new mattress, you started squealing in delight. This kept up for at least 20 minutes until it was time for lights out. I am so glad you are grateful for your big girl bed! That makes Mommy and Daddy want to do more nice things for you. For your birthday Mema is going to help us redecorate your room with new bedding. I already have it picked out and it will be gorgeous, just like you!

I think you must feel like a princess in your huge, soft bed that just swallows you up. Each night before bed, we read one story from your Bible, "Goodnight Moon" and then one other book that changes nightly. Daddy and I laughed as we read "Goodnight Moon" and I pointed out the little bunny climbing into his huge bed. I started to say how silly he was to be in such a big bed, and then we realized he was about the same proportion to his bed that you are to yours. Your bed might be a little bigger even. But you aren't silly in yours, you are just precious.