Thursday, October 18, 2012

The Appointments

Cohen had his big appointment at the high risk infant follow up clinic yesterday. It's a combination of tests to see where he's at. I have to admit, I left feeling a little discouraged. I knew we were going to be in for a long day just with the appointments, but to add in the combination of Cohen's tornado-like habits when he gets overwhelmed...oh boy. I didn't take any pictures, except one in the car, because I was trying to keep him from wreaking havoc on the place.

First up was his meeting with the psychologist. Yep, my one year old has already had his first psychological evaluation. I sat with Cohen on my lap at a little table while the psychologist sat across from us with a booklet in front of her that she was scoring Cohen on what he did and didn't do. I was supposed to sit there with him and not interact with him. So, there we sat as numerous toys came in and out of the drawer. Could he find the toy under the washcloth? Turn the pages of a book? Bang two blocks together? Put the blocks in the cup? Does he say words? Does he walk? Does he point to things when you say the word?

I have to admit, it was all a little overwhelming. I didn't anticipate responding that way, but it is what it is. Here I sat with my 16 month old miracle while he was being judged for where he was at. I know, I probably took it a little personally, but it was just so hard to sit there and watch him being scored for the things he "should" be doing. And it felt like they were focusing mostly on the things he couldn't do. Um, hello? There wasn't any guarantee that he would be sitting here today! Can't he get a million points for overcoming infections, intubations, heart problems, kidney problems, skin problems, and massive lung problems?

I had to keep reminding myself that while the psychologist seemed fairly indifferent to the whole process, I knew what Cohen had overcome. It's kind of like that day that I sat in the NICU wondering if Cohen would ever come off the ventilator. He still seemed so sick. And then one of his doctors came in and told me to think back to a week ago and a month ago and to see the progress that he had made. While the changes seemed small, each one added up to a lot of change and a lot of progress. It was easy for me to get caught up in the moment and want big, huge improvements. But, as parents of preemies know, preemies have minds of their own. I know with Cohen, he does what he wants, when he wants. In his own time. And I know that's how it's going to be with everything else too. Who cares if he doesn't bang two blocks together? We know how far he's come. Plus, what baby has an "evil plan" cackle and a fake laugh that will make anyone (besides psychologists) smile? I would give him a few extra points just for that. And for being able to open the front door and crawl out. And for being able to chase down his cat and poke his eyes.

Cohen is at an 11-13 month level (he is 13 months adjusted). His hearing is perfect and he gave two residents a run for their money when they tried to do a physical exam on him. He also entertained several doctors sitting on the other side of the double mirror that he insisted on licking (ew), banging on, and playing peekaboo with himself.

Cohen also had an appointment with his regular pediatrician earlier this week and he has broken the 20 lb mark!! He's also in the 60th percentile for height, on a non-adjusted chart!! 

All I know is that today I was reminded that I am proud of Cohen no matter what those charts say. We are so thankful to have him in our lives and we are happy with whatever he does, when he decides to do it.


  1. That dose sound really difficult. I know I had a baby that was delayed and it was hard not to be defensive about it. Cohen has come so far I know you are a proud mommy.

  2. I'm not a big fan of follow-up clinics. They are just so exhausting! They are good if you are not receiving help/therapies or need direction in the regard. But really, they are more for the hospital record keeping than anything else. Once we realized that, we stopped going. Jack and I always left super exhausted and without a single new thing gained/learned in the process. We already had a huge team working with us, we didn't need some person we didn't know sit with us for hours going through a booklet and checklist.

    1. I agree Jessi. We tried to opt out of the hearing test (because we KNOW he hears just fine) but in the end got talked into it. It ended up being the easiest part. I know all the testing is mostly for their research and I would love to support it, but I don't want to do it at the cost of making my little man completely overwhelmed and miserable. I'm not sure that we will be participating next year as we are already working with OT and his pediatrician and know where he's at! Thanks for making me feel okay about the thought of not going!! :)

  3. I think it is crazy how long the tests are. Camdyn signed and said all done half way through her last one. I cracked up. When the tester asked her if she could find a picture if kite swimming she told her no even though I knew she knew it. I'm sure Cohen thought the same thing. He was probably thinking he didn't feel like banging the blocks on command.

  4. like you said, no matter what the "experts" think, Cohen is your living, breathing miracle. he is your son. he is your flesh and blood. he is a fighter and a survivor. he is amazing and he's on track to do amazing things with his life - he already has! i'm sure my "mama bear" instincts will come out in full force in january at my alex's appt with a developmental specialist. hugs to you, friend!