Gearing up

Well, it's almost February. What does that mean? It means that we are getting closer to Zach aging out of Early Intervention.

I know, I know, you are thinking "Your 2 year old who is reading is in Early Intervention?" Yep. Zach has had a gross motor delay since he was 9 months old & while it did improve for a bit (he crawled at 8 months adjusted & walked just short of 11 months adjusted), he has had balance & coordination issues since November 2010. He was also delayed on sitting up & had high tone in his back at the time.

He has good days when it's not so noticeable & his orthotics really seem to help, but he has days where he is tired & falls... a lot (yes, I know that 2 year olds fall, but his is more than normal). His EI teacher notices it, the school Pt notices it, the Pt we see once a week notices it & also notes that he has "very poor motor planning"....awesome. Sometimes, he treats steps like they are not even there & sometimes he can do the stairways without trying to walk off of them or falling down them.

We go back to Neurology this month to see what she thinks. I need to bring video with me so that she can get a better picture of his quality of movement (it's off). We also start the transitioning process for EI. Now, if Zach does have Cerebral Palsy (gulp), then he should be able to still receive services.

Zach's pediatrician has been working with me & ordered a MRI back in November. It was normal much to her surprise. We also ruled out obscure metabolic disorders & it doesn't seem to be degenerative. Unfortunately Zach's symptoms are not so clear cut, so it's a hard diagnosis to make. Zach's pediatrician does think that he has mild CP & that his balance/ coordination issues are a result of his prematurity.

Duh. Seriously, it's like I thought that we were going to walk out of his being a 25 week preemie with a 142 day NICU stay unscathed. Nope, not happening. Yeah, I've had more than a few moments where I've had to tamp down my guilty feelings. I know that they are not going to help the situation & I need my energy to focus on everything that I need to coordinate for Zach.

It looks like we got the side trip in Holland after all.

Moments

I had a friend who made a post about this, but it hit me the other night.

I put Zach to bed (it was a good bedtime for us, not all of them have been lately...welcome to the terrible two's) & I said "Nighty-night Zach" & he said "Nighty-night Mommy". Oh, that moment, that precious, precious moment. How do I keep that moment forever?

I remember after we moved into the condo & I was holding him while he was sleeping, he was only about 9/10 months old adjusted & his hair was just starting to grow a bit. I was rubbing my cheek against the back of his head. I could still feel his soft, soft skin on my cheek & I knew that soon I would never feel that again as his hair would cover that skin. I wanted to hold that moment forever.

I take pictures & video. I try to post them on make comments about them, but it's of course not the same as being in the moment.

We had a moment today at SeaWorld. Zach was so excited about seeing the whale's jump that he just looked at me with sheer delight on his face. I want to keep that look in my memory forever.