Tuesday, October 6, 2009

rain drops.

Genevieve is asleep so sweetly next to me, so I figured I would write. She is doing great. She felt rain on her face for the first time this morning (normally I try to cover her head when it's raining). I wish I could've snapped a picture of her face. It was the sweetest, most innocent look a little girl could have. She hasn't been falling asleep very well lately. She fights and fights and fights it some more. She's been in her crib since birth, so I know it's not from that. Andy moved her into our room the first night and laid her next to me. She reached for my hand, curled her head up next to me and fell asleep within 5 minutes. The following morning she wouldnt take her nap, so he laid her next to me in bed and she did the same thing. Last night, same thing on the couch. And during the day when I want her to nap, I have to lay next to her and act like I'm taking a nap with her. Maybe a little separation anxiety? I have no idea. We have recently switched to having Physical Therapy every other week. It was nice to have last week off, but excited to see Amy (her PT) this week. After talking to some of our fellow EHK families, I've decided to talk to her doctors this week to see if we can stop pushing her to crawl. She does fine with pressure and weight on her knees, but tummy time just isnt going well anymore. We no longer need to wrap her chest, but she screams in pain when placed on her chest. I'm also worried about the trauma to her legs if she were to start crawling. Out of the other families I talked to, none of the kids crawled. If they did anything of the sort, they walked on their hands and toes with their little butts up in the air. Most started walking at about 10 or 11 months. I'd rather focus on building up her legs muscles and getting her to stand and walk, and just skip crawling, rather than causing her pain trying to get her to crawl.

Well, my little girl is staring up at me, talking to me. I hope everything is well with everyone :)


  1. It sounds like you are doing a great job. As for crawling, Kira never crawled, (she pulled and rolled herself around) although that probably wouldn't feel very good for Gen Also, if I wanted Ethan to take a nap, I ALWAYS had to lay down with him, I would lay on the floor though, and I learned how to take power naps because of it. Even when he got a lot older, if I just layed down on his floor, he would relax enough to fall asleep. So anyway, you just keep up the good work, and Drs. really don't know everything. I'm Ethan Goettsch's mom if you're wondering who the heck I am.

  2. Well Hello Ethan's mom! :) I'm Anna. I went to school with Ethan and Kira, was a grade older than Kira. I have definitely learned that doctors do not know everything. Makes it even harder that her skin disease is so rare, because it is very hard to find a doctor that has even heard of her skin disease. Plus every case of EHK is different. So what works for us, may not work for another family for skin care. It's all a learning process, and trial and error. We had therapy today and so now we are focusing on getting her to stand and then start walking. I feel much more confident with that than I did with the whole crawling thing.