A Day in our Life

I think that stay at home Mom is a total misnomer. I mean, who really gets to actually stay at home? Today I drove over 130 miles. We had an apt. for Emma, visited my parents, and came home in time for dance lessons.

Here are some snippets overheard on our road trip:

• Julia: Mom, is this your iPod on the radio
• Me: Yes (and hoping I don't get the request to listen to Signing Times because I am enjoying the one time I actually put on my music)
• Julia: Is this Lady Gaga?
• Me: No, try again.
• Julia: Pink! It's Pink, Mom.
• Emma: Aaahhhhh (I think she likes Pink as much as I do!
• Julia and I sing - So what, I'm still a rock star...
• Julia: Emma is a rock star!
• Me: Yes, you're right. Emma is TOTALLY a rock star
• Julia: And I'm a rock star too!
• Me: Absolutely. You and Emma are both rock stars
• Julia: And you too, Mommy. You are a rock star, too. Then she starts singing.
• Emma: starts laughing
• I am quiet and just enjoy the moment. My girls are rock stars!

Here is a brief summary from our visit to the orthopaedic surgeon:

• Emma is looking good overall and he is happy with her progress
• He isn't as worried about how tight her hamstrings are as her PTs, but did show us how to do the hamstring stretch with her and wants us to do it regularly
• He said she's ready for a gait trainer. I told him we're working with her PTs to get one for her, but it's going slowly. We've tried the Rifton Pacer and that seems good. We will test out the KidWalk on May 5th and I'm hoping to have a decision in early May on the gait trainer to order. It takes so long for insurance to approve the equipment that I really want to get a move on this!
• Emma walked for him! Yeah! Of course, it took Chris laying on the floor and she started walking right over to him. He was really happy to see how happy she was to walk and thinks it's great. He doesn't care if she walks with or without her braces - he's happy she is walking and said to let her do it whichever way she prefers because we really want to start getting her moving more.
• He noticed how tight her adductor muscles are and asked us to do a stretch to loosen them up. This should also help her not scissor (get her feet stuck on top of each other) so much when walking
• Her left hip is doing well. Her right hip is starting to come out about 20-25% and so the are going to watch this. The stretch for her adductors he showed us could help with this, so this is now going to be a part of our regular routine. Weight bearing, which she is doing well now, will also help with this. We do not want to have to face surgery if we can avoid it by implementing the stretches!
• We see him again in 6 months and they will take another X-ray of her hips then

Conversation at dance class waiting room:

• Questions about what Emma is drinking. It's her formula with sweet potato/zucchini puree mixed in. She was still hungry after dinner and so I added this to her drink and mixed it up before we left since we had to leave and I didn't have more time to get her to eat.
• Mom I don't know well(MIDKW) - So......what's the deal with her eating?
• Me: She has cerebral palsy
• MIDKW: Oh
• MIDKW to other Mom - I give parents of special needs kids a lot of credit. I mean, I love my children and all but I don't think I'd be able to handle it at all if there was something wrong. It just takes too much time. Oh, and teachers of special needs. I couldn't do that either. It would break my heart.
• Other Mom - I have a friend who has a child that is blind and autistic and it does take a lot of time.
• Me: Pretending I didn't hear that while I turn to another conversation. Thinking to myself that they missed all the fun times I had with Emma the last couple of days and only see the work. What a shame. They don't see Emma giggle when I hold her head out in the rain for her to feel it hit her face. She LOVES that! They don't feel like a rock star when their child looks at them. They might go to bed a little less tired than me each day, but don't pity parents of children with special needs. We don't need pity. An offer for a bit of help sometimes, yes, but pity, no.
• MIDKW - talking about how her child is having issues with her weight and they went to see a nutritionist. She is 45" and over 80 lbs. and if she continues on this track will have Diabetes by age 9. She has her on a new diet and she is doing well. I gave her some tips on healthy foods to make and also a couple of cookbooks. I have learned a LOT about cooking courtesy of Emma. She seems like she is really working with her child to get things under control.
• Me thinking: I hope she does, because if her daughter gets diabetes at age 9 wouldn't that put her in the special needs category? Especially if she was insulin dependent? And that leads me to other thoughts that I won't mention here.