Mister Owen

It's about time I do an update on this little guy!

Owen ... you are doing pretty amazing lately! You feel good and it shows. You still have some days where you don't want to get out of bed or off the couch, there are days full of puking and then there GREAT days!! We LOVE those days and are seeing them more often lately!

You love to play with trucks, trains, cars, puzzles, read books, watch movies (Elmo is still the fav) and play catch. You can throw a ball faster and harder than I ever could and your favorite game is keep away. You throw the ball and then say "Mama get it".. when I go to get it, you race me over to it and say "I GET IT!!!" This is followed by the best belly laugh I have ever heard! You have been asking to watch "football" on the weekends and there is no way anyone is changing the channel. You get so into the games... at least daddy is thrilled.

You are in bed by 8 and up at 7 each day. You relax and watch cartoons all morning while the rest of us get ready and out the door. You love to take Sis to school and give her kisses each day. You always want to go "bye bye" and rarely want to "go home". You get tired around 11:30 everyday and say "night-night Mama". I put you in my bed and you are asleep before your head hits the pillow... this is the longest two hours of my day.

You look forward to swinging at the park when we go to pick up Sis and can't wait to see your cousins and Kami after school. The rest of the night is fun with Sis, Daddy and Mommy. You usually won't eat anything orally during the day, but as soon as we sit down for family dinner each night, you can't get enough food in your cheeks.

The last two hours before bed are your best. You have more energy than you had all day. You usually do most of your walking at night and you love to wrestle on our bed. At 8pm, you insist on tucking Sis into bed and giving her a kiss before you will go to sleep yourself. We all think this is the sweetest thing ever!! You lay in bed and are zonked out within minutes.

Three days a week you have therapy and you love the attention! Jessica come every other week to work on PT and you aren't too excited with the idea of having to be physical. You are stubborn and want to do thing at your own pace and if we push you... you turn blue. Usually we get about 15 minutes of PT in an hour session. You win some.. you lose some. The best news is that you learned to walk on your own! You only walk at night or for little bits throughout the day. Walking makes you turn blue and your oxygen sats DROP, but you'll figure it out with time. Butt-scooting used to do the same thing to you and look at you go!

You just got a new speech therapist, Sherene, and she is great! We did a language test on you last week and you scored just a little below average. You definetly understand what we are asking you, but you just need to work on expressive language. You say new words everyday and I have no doubt that you will catch up with your peers soon enough. We're still working on those back sounds... "kkkkk and ggggggg". Mommy got in trouble for saying "walkie, walkie... and Do you want some wa-wa Owen?" Point taken. Mommy won't talk like you do... I will correct you from now on.

Connie still comes every week to work on Feeding therapy and has since you were a few months old. It's amazing when we talk about how far you've come. You love food. All food. You stuff your cheeks like a chipmunk but then store it there for another season. Ha. You just need to figure out that food can go down the pipe! When you get tons of food in your cheek you scoop it into the sink and go back to eating. You are going to be a great eater someday. I just know it! Until then, mommy continues to tube feed you every 30 minutes ALL. DAY. LONG. and I'm kinda wishing you could talk to your tummy and tell it to tolerate a little more volume. Could you do that please?

You don't eat because you are always full and who wants to eat with a full tummy? This is something we are hoping to overcome after you are a bit more stable (after surgery or transplant). Walking is hard because you're body is already working so hard to keep your oxygen sats at 70%. When you walk and they drop into the mid 50 range, you are about as blue as can be. You continue to get up and keep trying though. You are such a tough little guy.

You are now getting six medications a day and you like to administer them in your Gtube... "I do Mama!" I'd say since you're big enough to inject them into your tube, why not just take them orally, but I seriously do not blame you. They smell something terrible, I can't imagine drinking them.

You have a new obsession with drinking constantly. You drink water all day long and have to have a cup by your side all the time. The only other thing you will drink is soda pop and that's my fault. I was hoping that by drinking carbonation, it would stimulate you swallow the food in your cheeks. No such luck. Now you just drink the soda and the food stays put. Ha.

Most days I forget that there is anything wrong with your heart. I don't see the oxygen or the tubes anymore because it is so normal to us. I think of you as a healthy little boy and am so blessed that you have overcome so much. I wish I could say you were healthy and your heart is fixed, but it's not. Not even close. You have some pretty big hurdles coming up in the next few months. I am in awe of who you are Owen. You cooperate through the tough times, you smile through the rest. I often wonder how long we will get to keep you and it's breaks my heart to think that your life could be cut short. I have SO many dreams for you.

You continue to defeat all the odds. Two years ago, this week, we were told to find a heart transplant center because you surely would need one soon. Your heart was in bad shape. Your pressures were extremely high. We were scared for you. We were confused and lost and looking for Hope. We found it for you.

Two years later, there is a lot of HOPE!! The medicine therapy worked. You are gaining weight like a champ. You are a strong boy and continue to remain stable. Your pressures decreased miraculously. Even those nasty antibodies that were to make transplant so difficult... they came down on their own...significantly. We are getting ready to go back to Stanford the first week of December to meet your new surgeon. We will trust him to make the best choices for your precious heart. We may ask you to endure more pain, more developmental setbacks, and for you to be BRAVE. You always are.

Owen.. you continue to amaze us each an everyday! We're not sure why we were blessed with such a miracle after eight years of infertility. You have changed us all forever. We love you buddy!!!