Sunday, May 18, 2014

>>PWS AWARENESS MONTH - QUESTIONS

Today's questions is from my good friend, Jill. She asked, "As you watch Clover and Henry grow up side-by-side, what are the day-to-day differences between them?"

When Clover was first born and in the NICU for two months, she was very, very floppy. She rarely moved, she never cried, and she only opened her eyes a handful of times. When Henry was born, I heard him cry right away. I remember holding him on my chest and he lifted his head clear up off of my body. I was absolutely, completely amazed! I think in my mind I didn't think babies could do that.....after all, Clover was 2 months old and still not lifting her head even an inch. So this was the first, real difference I noticed between the two of them. This and also their eating abilities. Since Henry was a preemie, he was fed through a feeding tube for 2 weeks, but after that, he LOVED his bottle and drank it right up, and often times even wanted more. Clover was so weak, she couldn't even eat from her bottle. We would try and try to feed her, but it was just too hard to suck and she would just get too tired. She was fed through her feeding tube for over a year.

Henry started walking at 10 months old, and now at 18 months old, he is RUNNING all over the place. He is climbing up on things, walking backwards, balancing on one leg, etc. At 20 months old, Clover is just starting to figure out how to army crawl, but after just a couple of pulls, she is worn out and resorts to rolling instead. She is still bearing very little weight on her legs. Their gross motor development still seems to be the biggest difference between them.

As far as day-to-day stuff, Clover gets a growth hormone shot every night before bed. This is an actual shot (with a needle) that we have to give her every day (I never imagined I would ever be able to give anyone a shot….let alone my own baby). She also gets several medications a day and is hooked up to oxygen at night. So, her nightly routine is a bit different than Henry’s. After shots, medicine and a bottle, I can put Clover right in her crib and she is totally fine with going to sleep. She has slept through the night entirely since the day she was born. Henry is not so easy. We change him, get him in his pj’s, he has his bottle, and when HE is ready, I can put him in his crib….but it often requires another diaper change, more milk in his bottle, running around, a story, hugs, more bottle, etc before he is okay with going to bed. And even then, he often wakes back up after a couple hours and wants something (usually a diaper change).


Clover also gets therapy three times a week.  On Tuesday she gets occupational therapy, Wednesdays is speech therapy and Thursdays she gets physical therapy.  Luckily, all three of our therapists are great and include Henry as much as they can.  They let him dig through their bags of toys and allow him to join in on all the therapy fun.


Their little personalities are both very different. Clover is very social (although she is starting to get a little more shy at first, but warms up quickly). She waves at everyone, yells at people from across the room, loves to interact with others, etc. She wants to be where the people are! Henry is more reserved, he is fine to just play with his toys and not really care what other people are doing. He likes to watch tv or do an activity (build blocks, color, etc), rather than be with people (he totally takes after me!). If we are sitting in a room with a bunch of people, Henry doesn’t want to sit on my lap….he wants to get down and wander around and explore. Clover on the other hand, she wants to be right up on my lap and in on the conversation with everyone. Who knows, maybe if Clover could walk, she would be out exploring too???

These are all the biggest differences I can think of. Other things include food and eating….we can’t eat in front of Clover or she goes crazy. Henry usually couldn't care less about the food. Also Henry can eat many foods that Clover can’t (or shouldn’t) eat.

Thanks so much for your question, Jill!  This was kind of a hard one to answer. We always notice their differences throughout the day, but when I had to actually list them and write them down, it was a lot harder than I thought it would be. Hopefully I answered it well enough!


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