Encouragement
Thanks for all the comments and emails. It means so much to us. This was the worst week of our parenting careers so far. Charley said that Wednesday was his worst day as a father. He was upset that he couldn’t get the baby to stop crying. She was in pain and he held her for literally hours on end. He was amazing, but it was hard on him. I re-read some of the blogs I wrote this week. I actually thought I was sugar coating parts of our week, but it does seem accurately bad in the blogs. We’re doing a lot better now. My dad called and I admitted I was really mad at God one day. He was like, “No kidding. Wouldn’t have guessed that from your blogs.” 
Life is finally returning to normal. Baby is going to bed at 10 again and can sleep without waking up screaming. She is better about pain in general. She still can’t be picked up or put down without crying because that hurts her little feet somehow. We went to orthotics AGAIN today. Charley went back to work so it was me with baby. The shoes kept falling off after getting them changed for the last three days. When I called and got the receptionist of orthotics, she was very short with me. She asked who I was so I gave her my name and mentioned that she might remember me since I’ve been in the office for the last three days straight. I told her the problem and heard her sigh audably! She informed me (not so kindly) that I had 25 minutes to get there or my baby would not be helped until Monday (three days later)! It didn’t matter that I had mastitis, hadn’t eaten that day, needed to feed the baby or wasn’t dressed. I took enough time to make Laelie a bottle (and get dressed, don’t worry ) and raced to Children’s Hospital. They added a little padding in the left shoe and sent me home. The guy who takes the parking fees took pity on me and didn’t charge me. Probably ’cause I looked like a mess.
But that did the trick. Laelia’s shoe-braces haven’t fallen off again. I’m so thankful. When they fall off or are slipping, they aren’t holding the foot in place and more casting would be needed to fix that. Today makes four days in a row that we’ve been in to fix these darn things. I’m hoping these places learn that I don’t go away when they shoo me. I stay and make them fix it.
Tonight I talked to a father of a boy with arthrogryposis (AMC) whose son seems similar to Laelia. He can walk. His parents were actually told he would though. We, on the other hand, were told “I don’t know,” then, “I don’t think so,” then, “Lets just make her comfortable for life in a wheelchair.” The father gave me the name of the surgeon that helped his son, so Charley and I are going to try and see him for a consultation. We don’t want to look into surgery yet; we just want more options.
I just really feel like Laelie will be able to walk. Maybe not for years. Maybe not in the same way others do. But I just think she will. Maybe it’s wishful thinking or maybe it’s women’s intuition.
I’m getting a DVD from the vice president of the AMC support group on how she does everyday things like getting up and ready in the morning. She was also told by doctors that she would never walk (which she told me made her mother MAD ). The DVD was only $10 and goes to support the group. I’m looking forward to it.
When the braces on her feet get removed the next time, I’m going to take a picture of Laelie without any braces or splints on. Then I’ll post it next to a picture of her at day one of life. It’s amazing how twisted she was and how much better she looks now. In some ways parts of her body look bad, but it’s only when I get out the old pictures that I realize that they actually look so much better!
My friend, Rachel, came over today and played with the baby. Laelia loves Rachel. She asked if Laelie is always so good when other people play with her. “No, just you.” I taught Rachel how to do her stretches and we did them together. If it weren’t for Charley yesterday and Rachel today, I wouldn’t do the darn stretches. I feel like it’s just adding insult to injury with the week she’s had, but they are really important despite everything else going on. We found out her thumb is missing a ligament (we think it got damaged during casting), but besides that thumb, her hand is really improving its range of motion.
She’s really doing a lot better. That makes everything better.
