Wednesday, July 11, 2012

 I love watching my mobile!

 Chillin with dad is cool!
 Fast asleep in my relaxing glider.
 I am really good at loading my diaper.
 ...Today it was a bit overloaded, as a matter of fact, and the whole changing experience was exhausting. It took all the energy I had. -I took a 30 min nap on the floor.
 I love sleeping in my daddy's arms!

I'm so happy!!

Owen weighed 9lbs and 1oz at the last appt on Monday. He's doing a nice job of gaining steady weight. He's still 20 and a half inches long.

Since the swallow study, we tried moving too fast with jumping in and consuming thinner fluids. Mister Owen wasn't ready for that, and he's ultimately taken a step backward in even how much he now takes of the thicker formula. Mommy got over eager and wasn't aware of his needs with a slower process. Today, I've grasped the reality that feeding isn't going to come easy for him; even with the absence of reflux and aspiration. The Gtube is going to be a lengthy part of our journey.

These last two days, I've worked really hard to get some help with his feeding needs. Perhaps, I would have been more realistic with my ideas in changing his feedings had I received some professional support and guidance. Without first steps in the picture, it has been a challenge to find the right services for him. Apparently good help, outside of first steps, is hard to come by for an infant. But persistence pays off and we have an outpatient appt on tuesday with a speech therapist at kosair. First steps may also do a discipline-specific evaluation to see if he qualifies in that way.

We're also working hard to figure out the options and make plans for childcare when I return to work. There are two places that work with little ones who have special medical needs. This of course comes with its own set of obstacles to get set up and get covered. Not a big surprise, I guess, that Humana doesn't cover this need. Only a few insurance companies do. The daycares mainly bill medicaid...We've got some more exploring of resources to do.

Apart from all the frustration with needs and limitations with services/resources, Owen is doing great! He makes steps every day. He was rubbing his eyes today when he was sleepy. He put his sweet little hand up on his bottle today to help hold it. He’s been looking over at us when we start talking to him. He tries really hard with great determination to get his paci back in his mouth when it has fallen out. He doesn’t have that mastered just yet, but boy does it take him awhile to give up. He also plays more with his little toys. He's getting stronger with tummy time. He’s such a wonderful little baby and such a joy to take care of everyday.

I was reading the report from the first steps eval. It had a section on his history, and wow, how far he has come. It was a different perspective to see a listed version of all that Owen has faced since his birth, and to reflect on all his accomplishments. Its still hard sometimes to believe that for such a little guy, he has an amazingly strong fighting spirit. We love him so!