Wednesday, January 14, 2009

Breakthroughs and Fallbacks

We have had a breakthrough on our Physical Therapy and Occupational Therapy sessions these last two weeks. Until last week I had been requesting a different PT person because for the last six months our current PT person, while very nice and competent, seems to freak the boys out on sight. There have been times where she would come in to the room calm and quiet, not even looked at them and they would melt down in hysterics. I always try my hardest to make sure we've fed them early enough and that they get a little nap right up to the time of their workout session in hopes that those issues are resolved before she gets here and they are in a good mood. Until last week I could count the number of sessions that went just okay and at least one baby might have worked out with her for 5 minutes before screaming bloody murder. Usually for our "good" sessions she would tell me what to do with the baby and I would try to do it for her.

Then last week the boys were fed and napping for about an hour before she got here and I brought them down and we just chatted for a few minutes not even acknowledging their presence. Both boys were all smiles and the PT was able to do a full hour and a half work out with both of them. I never had to hold anyone, never had to console or pop a paci in a mouth. We were so elated we hugged at the end of the session. But I didn't post about it because I didn't want to jinx anything.

Today we had our 6 month post-nicu Early Intervention re-evaluation and there were four people in the house with us. The PT and the OT were there, as well as our service coordinator and the new program director, both of whom we've never met before. The boys had eaten terribly this morning and napped even worse, so we started off with some tears and lots of concerned furrowed little eyebrows, but oddly enough Cameron let the PT hold him and was even tired enough that he rested his head on her shoulder and laid snuggling in her arms for most of the visit. He wouldn't let her work on his fitness however, he just wanted her to hold him. This is a huge first! And Evan was working today's session with the OT who is a lovely Indian woman with a heavy accent who normally scares him. But today, after much more whining and fussing he calmed right down and let her do things with him that even I have not been able to do for weeks and weeks. Both boys let the OT put a finger brush in their mouths and then feed them applesauce which they absolutely loved. They even flirted with sweet smiles to the service coordinator and program director at the end of the visit. It was quite a breakthrough day for them!

And they have also been tolerating tummy time a whole lot more these last two weeks. Truly it has been like a light switch as far as their physical tolerance. Something that makes this extra sweet is that the boys are starting to really notice each other and as of yesterday they started making each other laugh. It's not the kind of laugh where one does something for the purpose of making the other laugh. Instead one baby will watch another baby doing something and just bust out laughing! We're trying to get it on video but it's tricky. These moments are so fleeting.

But our fallback has been a week and a half of horrible vomiting and eating aversions for both boys. It's worse than it's ever been and it's all because we thickened the formula to 30 calories. I had told the GI Dr that this would happen but she told us we had to do this for the next 3 weeks so we could see if their weight gain, or lack there of, was a metabolic issue or if it was just a reflux issue. It takes easily an hour to two hours to feed them one at a time, and poor Cameron will throw everything and the bile in his belly. You can feel his whole body convulsing. And afterward Cameron is still hungry so I have to feed him one more ounce at a time hoping we don't have a repeat performance. We are doing so much laundry, all our furniture has towels and blankets on it, change our clothes several times a day, sometimes right down to the underwear and socks.

One of the worst parts of having a preemie that many people don't realize is that the NICU Cha-Cha dance, that up and down roller coaster of events doesn't really end once you get them home. But it does end eventually. At least that's what everyone keeps promising me.


Trish said...

But it does end eventually.
I'm not sure I believe you.
But YAY on progress!

Dianna said...

That is great you are seeing progess with therapy!!!

You have an award waiting for you *smiles*

Jennifer said...

Yay for progress! Rowen has grown to love his therapists and I hope your boys do to. Sometimes I leave the room so the two of them can get down to business.