Quiet Day

Gabe and I are hanging out home, enjoying a quiet day today. Josh and the older two are camping out at Harmonie State park with some friends. I haven't heard from them yet today, so I am sure they are having a wonderful time - and enjoying perfect camping weather. There were multiple times this spring and we would walk outside and sort of sigh at the "perfect camping weather", knowing it would be a while until we really got to enjoy it. The guys have been planning this weekend for many weeks, so I am so glad they were blessed with perfect weather - it's like a gift!

Thursday we saw Dr. Stanley, developmental peds, here in Evansville. We saw her last back in late August, same day as the last sleep study. She was absolutely amazed with Gabe. She told me she was half afraid to come in the room, wondering if she would see a baby on a vent. She was pleasantly surprised to see no trach or vent, and her jaw hit the floor when I told her about our last sleep study and Gabe's tremendous improvement. I told her we hadn't heard any mentioned of a trach since the last study and she beamed at us and uttered "I should hope not". She was pleased he had the Gtube, since it seems eating is just not safe, and since we've gotten it, he is more "orally inclined". He likes putting stuff in his mouth, now that he knows it isn't going to be a liquid. She was glad that the puree feedings are going well and also happy to hear we are in the process of getting some oral stimulation with an Occupational Therapist through first steps. Her main area of concern is his trunk strength, which I know is a little delayed. She felt it was worth having PT take a look at him again, since we are developing a service plan with first steps anyway. With the Gtube placement, we have been pretty tentative about "tummy time" and still use the boppy for that. We were also pretty tentative about sitting him up for the first couple of weeks after surgery, so I know that slowed down the proces as well. I had him in the bumpo this morning and also did some tummy time on the boppy. I think I wore him out, since he just conked out in his bouncer seat. Oh welll, it's good for him! I think that is the gyst of that appointment. His weight and length are right on target, but have drifted down to the lower range of normal, so she wants to stick with the fortifying of the breast milk for now, especially since we have been increasing his volume slowly, due to his reflux. The reflux is really improving too, so maybe we'll be more comfortable upping the volume.

Next week we see pulmonology here in Evansville and then journey back up to Indy to see dr. Rouse and hopefully get switched to the button on the Gtube and then we will have the full night sleep study. I think I am more nervous about this test than any other - since the first one delivered us such a shock. With the last test, I was just hoping that the results weren't worse. I wasn't prepared for them to be improved, and definitely not so dramatically. Things have been good for so many months now, it makes me wonder what lies in store - when we can really relax and just trust that the setbacks are behind us. Kaci - your comments really touched off in me. I look back through those pictures too. Just last night I scanned back through some of the early postings and the accompanying comments. I hadn't done that in a while. It really hasn't been that long, but he looks so good now the summer's events seem like a bad dream that we are finally waking up from. It's a miracle that he is here at all, it's humbling that he is not just improving but thriving. Thanks for your comments. You're right, it was so painful, but enriching and inspiring as well. We'll never be the same - and I thank God for it! Thanks again for everyone's comments and for signing the Guestbook - I haven't thanked you all in long time, and I am sorry for that. Keeping up the blog has been carthatic It has served as a record and testament to how far we've come, and it has provided us with both an outlet and a chance to receive encouragement and to be uplifted by our friends and family.