Thursday, September 30, 2010

The Good and The Bad and The Ugly

Let me first announce the good. Lauren eyes are fine. Over the summer, she completed two more eye tests and has seen 2 more optometrists who say her eyes are functionally fine and that she is seeing. We asked about CVI (based on the results of her first eye test which pointed to delayed cortical response time), and they said for now they don't see the impairment. Her vision has improved over the past 6 months, so the optometrist thinks that her vision was probably just late to mature. So that is definitely a relief...I was so scared. At one point I even watched videos on youtube of kids with CVI and how they lived...I know, I'm a nut. She'll go for another eye follow-up in Feb of next year.

Lauren is getting stronger every day. As part of her physio, we have been working on getting her to crawl up the stairs in our house. We started this exercise even before she could crawl and it was like pulling teeth. We would put Lauren on the first step and she didn't know what to do. She wouldn't even put her hand on the next step above her, let alone pull her leg up onto the next step. And we would use cheerios to coax her to move even just an inch. It would take her forever just to get herself up a few steps and most of the time, we were pulling on her pants or arms to help her up. And now, a few months later, she's doing the stairs all by herself. Slowly, but surely, she'll make it all the way up to the top, even without a spotter behind her. Yes, it takes three of us to help Lauren climb the stairs. You've got me and Kayla in front of her at the top, cheering and encouraging her, and you have Steve behind her, her safety net in case she falls back. A family team effort that has paid off.

So along with the stair climbing, Lauren has been working on her crawling. The physio says she has weak arm/shoulder strength which is why her crawling is so slow...although its a lot more fluid and faster than a few months ago. The physio said the only way she'll get faster and stronger is for her to keep practicing her crawl. And so the little caterpillar inches around and continues to dusts our floors clean.

While her gross motor skills have improved, speech is still not moving along. That's the bad part. No babbling (except when she is crying) and the only person she seems to have a conversation with is with her 5 month old cousin! Her attentiveness is still not very good but hopefully it'll get a little better with ear tubes. After the surgery, which has been confirmed for Oct 12th, we plan on getting Lauren a regular speech therapist to see her. Hopefully this will help her or maybe she'll naturally hit a spurt soon with her speech, just like she did with her gross motor.  Either way, I'll keep my fingers crossed. Fine motor, slow as well, and no major progress to report. Both these areas, according to her chromosomal abnormality, are expected areas for delayed development. I just wish I knew how "delay" is quantified and all the therapists and doctors keep saying is only time will tell.

And now the ugly, she is still refusing to nap, still. Its been a month now, and nap time is still non existent. I don't know how a 1 year old can go all day without a nap. The good part is that at least she goes to sleep at night without a fuss and she is sleeping a bit longer at night. But still, all day without a nap drives me crazy.... I need a nap for goodness sake!


  1. Great news about Lauren's eyes! As for the babbling duo, I can tell that he really enjoys interacting and talking with her.

  2. Bella doesn't nap either! Drives me insane. I think part of it is being shuttled to so many therapies, that we aren't ever able to have a routine. 12plus hours though with an awake 1yr old makes for a very long day! Interesting about the CVI diag. Our optometrist is hesitant to give that diag also. He keeps saying he thinks her vision catch up and she just needs time. Patience is not one of my strengths! We were at a new neuro the other day and I saw he wrote CVI as one of her diagnoses though. Go figure, even the the experts can't agree. It's frustrating as a parent, that's for sure.


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