Photo for the day

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.

Specialists Week

Emma sees quite a few specialists on a regular basis. I am sure that she has seen more doctors in her 2 years than I have seen in my entire life. She is now on pretty much a 6 month follow-up schedule and April was the month these appointments hit. This week we have appointments with the orthopedic surgeon and the pediatric neurologist.

Our last visits with these doctors in October were overall positive and I expect to hear more of the same this week. But..........I've been burned by this expectation before and it makes me more cautious about how I approach the specialist appointments.

I walk into each specialist appointment looking forward to telling them all about Emma's progress. I like to emphasize how amazing Emma is in overcoming obstacles and winning the hearts of so many people. At the same time I'm usually sick to my stomach that they might dole out more bad news or make some bleak prediction that I could do without.

Truthfully, I don't think that any of the professionals can predict Emma's future, so I'm not sure why I get so nervous. They see Emma for 15 minutes every 6 months and Emma is distracted - looking all around at what is in the room, the lights, the instruments, not caring a bit about doing anything for the doctor in front of her. They don't really get to see the side of Emma we see at home. The side of her that laughs at our silly antics, that is making great progress at trying to crawl and walk, that is always up for an adventure.

Chris and I know Emma and think that we have the best shot at predicting what she can do in the future. We will continue to check in with the specialists- to make sure her hips are correctly set, that she stays seizure-free, that her therapies are appropriate, etc. I'm sure that I'll always be a little nervous before the specialist appointments, but I'm predicting that as time goes by Emma will amaze everyone on her team.

The future is so bright

Emma started getting PT at the local children's hospital 2x/week about 14 months ago. When we started there was a little boy about the same age as Emma that had a session the same time as her and Emma just loved to see him. Both children were way behind on their milestones, but the little boy was able to sit up and use his hands better than Emma. However, he was a micro-preemie and had a lot of other complications that Emma did not have such as a feeding tube, bowel issues, etc. Eventually our PT time slots changed so Emma was no longer working out next to her buddy but we would see him in the halls and keep tabs on his progress.

This week Emma and her buddy had an overlapping PT session again. The little boy is now sitting, standing, pulling to stand, crawling, and walking with braces with a minimum of support and walking quite nicely in the gait trainer. He is also now talking and playing really well with toys. I was complimenting the little boy on all his hard work and a while later Emma's PT asked me if it is hard to see him doing all this. She was not asking in a bad way at all, but rather wanted a bit more insight into how us parents process this type of thing.

I was honest with her and said - no, he worked so hard to get to where he is at today and I applaud all his effort. I then said that I truly believe that it will be Emma walking like him in the not so distant future. (I didn't say too much about the other stuff like talking because that is not the point I wanted to get across to her PT. )

Now, I know not everyone thinks this about Emma, but I know my little girl. I know what makes her tick and I know how she acts outside of therapy sessions. I see the typical 2 1/2 year old personality she has trapped in a body that isn't letting her communicate this to everyone. I see great things in Emma's future, but they will happen in her own time.

After our conversation Emma's PT decided to put Emma in the gait trainer again to see what she could do. I smiled at that. I know she believes in Emma's potential or we wouldn't still see her, but I think our conversation reinforced her belief in Emma.

Here is a video I took of Emma last night right before bed time. She just had her bath so we didn't put her hair in a ponytail or tape her CIs on her head so they kept popping off, but we let it go since we were letting her have some fun walking to her Daddy. She is amazing.

Sleeping In

Here is the rest of the photo from yesterday. Julia looked so cute sleeping the other morning that I couldn't resist taking photos. She still loves sleeping with her small blankets and small pillows and this is one of her favorite baby blankets. There are loads more blankets piled up on the floor that fell off while sleeping. Notice how she has her beloved puppy sleeping in the cradle next to her bed? She sleeps like this ever night, but most nights puppy is in the bed with her and a baby doll is in the cradle covered with blankets - of course!