So we had another doctor's appointment with pulmonary (after rescheduling twice!!!) We got there late OF COURSE. Luckily we were able to still be seen...just have to wait for about two hours and some change. I wasn't too upset about it, though, because we've been waiting for this appointment (like every other pulmonary appointment) for some time now. Anywho, we went over the fact that we don't have a nursing agency and the importance of having one. LIKE WE DIDN'T KNOW! Unfortunately, we can't do anything until the paperwork is complete. Our hands are tied until the DDD program is complete and a nursing agency “accepts” the mighty dollar provided the their program. So far no one (nursing agencies) thinks the pay is significant enough to take on the “case.” They wouldn't have much to do. Everyone's (the specialist) main concern is watching him overnight. Possibly giving him medication in the middle of the night. Tre' sleeps through the night with no problems. BLESSED! You don't mess with him and he won't mess with you. It's been that way since he came home. He may have alarmed five times out of the almost nine months he's been home...and they all were due to a slight cough or heavy sleep. Still, no bites. I wish I had the money to counter what the DDD is willing to pay. Better yet, if our private insurance was still footing the bill we probably wouldn't be in this predicament anyways. So, we wait and continue to throw a line until we get a bite.

Good news is that Tre' is in the medical day care program!! Woowhooo! In the beginning he didn't like it and having him out the house was weird but I'm getting use to it and he's making new friends (that's a great key point in development). This kept him from returning to the hospital but he will still need night nursing. I can see a change in him already and he's been there for only a few weeks now. I was told how impressed they were with his improvements with all he had to go through. He still has work to do but everyone see a lot of possibilities. That's all I needed. Someone else to see what I know.

This also makes me feel better because he hasn't been getting therapy for a couple of weeks. We fell behind on a few co-pays and they have suspended our service until we come up with $350. Trust me it's only a few co-pays, too. It's amazing how these programs figures out who pays what and when without looking at the whole picture. Thanks another story that I don't want to get into right now.

He's been doing SOOO WELL with sprinting that the doctor wrote the most drastic order, yet! Drum roll, pleeeeeeeease: Tre' is allowed to be vent free during the day!!! Who want test me!!! Buck buck buck! LOL From 7am to 11pm he is not on the ventilator AT ALL! I have been pushing him from the last order of four hours twice a day. Instead of four, I'd monitor and push him a little along the way. His entitles and saturation was never in any danger. I honestly thought that the doctor was going to stick to the “program” or make minimal changes if any. He turned around and brought us to a half way point of this long race we're in. This is so unreal to us. I can't wait to take him to the grocery store, park, SOMEWHERE vent free.

If that wasn't promising news, Vic asked the doctor to guess/ use his gut feeling, if you will, as to when Tre' will be decannulated. He thinks, Tre' will be decannulated by NEXT SUMMER!! We have to take RSV season into account. We are soooo pleased with his progress. It feels great to be where I am with him right now. We're still working on him putting pressure on his legs, tummy time (Vic has been doing wonderful with him), and oral feeding. Currently he hasn't been receiving therapy for the pas few weeks because of finances but he'll be back in gear soon!

Oh yeah, guess who can say ma, and mom?!?!?!? LOL Yes! Tre' has said his first word! I've always heard people say that babies say dad before mom. I don't know what that's about because it obviously not true in this family.

I've been working a little ok a lot harder with his speech therapy. I have successfully got him up to 60cc and attempting to sip from a cup. We bypassed the bottle (it just wasn't working out) and are partial to a sippy cup. He's not actually drinking because that's learned. He puts his mouth on th cup (because he knows it gos there) waits for the drink (I think he likes the feeling of the liquid on his lip) and when I pull the cup away he does consume “some” water, juice, or soda.

Keep those prayer coming!

We would like to say a special Happy Birthday to his twin cousins. We'll try to make the birthday party this Sunday. Although Tre' HATES Dora, he'd go just for you two. Your cousin Tre', Auntie Anie, and Uncle Vic love's you, dearly.