Friday, April 30, 2010

Photo for the day

Tuesday, April 27, 2010

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.

Monday, April 26, 2010

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.

Thursday, April 22, 2010

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!

Wednesday, April 21, 2010

Wordless Wednesday

When Julia's awake I can't believe how quickly she is growing up. But when she sleeps.....she still looks like my little girl.

Friday, April 16, 2010

Special Moments

When you have a child that is significantly delayed with motor skills you learn to treasure each moment that unfolds that feels "normal." Today we had one of these moments when Emma and Julia hung out in Emma's crib for a bit after Emma's nap while I put away laundry. Julia climbed in the crib and I placed Emma in a propped sitting position and saw - for the first time ever - Emma playing in her crib. Emma loved it and just laughed and laughed and laughed.

Then, Julia started looking out the window and Emma kept yelling at her so I placed Emma at the window with Julia and Emma started squealing with delight. They looked out the window together for a long time watching the school bus drop off kids and the cars come and go. Emma fell down a few times and just laughed hysterically before yelling at me to put her back up again and I happily obliged. I couldn't resist taking a photo of the girls looking out the window together - watching them share this "normal" activity together actually made my day!

Tuesday, April 13, 2010

Safe Landing

We have a lot of changes going on in our lives right now. We're hoping to sell our house and move around the time that Emma transitions from early intervention into pre-school. We are also working on new communication methods for Emma as a bridge to verbal communication. This mainly consists of using eye gaze to communicate yes/no and picture cards to continue to immerse Emma in language. This is in addition to working on sitting, crawling, standing, walking, eating, talking.

To be totally honest, all of this can really be quite nerve-wracking. It seems nothing comes easy to our little girl, but you would never know it when you are around her. She always seems to have the biggest smile for everyone and a laugh that will make you melt.

Although the list of things we are working on is quite long, we try very hard to balance the job of Mommy and Daddy with the role of therapist. I'm happy to say that Emma is quite a well balanced little girl even though she does tend to be a bit over-scheduled some days! Most days our family is out and about in the community and Emma is enjoying everything that a typically developing 2 year old would enjoy.

Immersing our entire family in typical activities does requires a fair bit more effort for me and Chris. We are not the parents at the party chatting with our friends while our children play. Because Emma loves to play with the children, and she needs help from us to move, we are the parents that are immersed in the kid's activities. We are - by necessity and desire - hands on parents and know that our efforts are completely worth it.

Lately I've been thinking a lot about something I read somewhere along the way - God never promised us an easy passage, only a safe landing. I find this quote pretty uplifting, especially during those nerve wracking days!

Tuesday, April 6, 2010

Photo for the day

I'm taking a class on photography with my new camera and last week's lesson was all about depth of field. I love how some photos look with the blurred background and this lesson taught us how to do it. I just uploaded my assignment for comments and I'm looking forward to the feedback. I thought I would post the photo here, too, since it would make Chris laugh and I like to make him laugh.

Monday, April 5, 2010

Happy Easter!

I'm a day late in posting this, but we wish everyone a wonderful Easter holiday!

Therapeutic Riding Update

Emma has made so much progress with her horse riding. When we started, she cried incessantly and mostly had her head touching her knees! When she was introduced to the goats, she fell in love and started smiling at the horse farm for her sessions. Her trunk control started getting better and eventually she was sitting on the pony with less help from her instructor (Miss Kris!). Her head control started to improve dramatically last year and we were able to turn her facing forward without worrying (too much) about Emma hitting her head on the handle.

Now, Emma is able to sit facing forwards for a good portion of each session and carries her head up high and her hands on the handle a bit more. Here is a photo of her during last week's session. How far she has come since she started riding 11 months ago. Congratulations on all your progress, Emma. You worked so very hard for it and we look forward to seeing you riding on your own one day.

Friday, April 2, 2010

Easter Egg Hunt

Today was a picture perfect day for an Easter Egg Hunt, and we were lucky enough to get to go on one at the horse farm where Emma rides. Have I mentioned before how much we love that place? We had a fantastic time at the hunt and want to say a huge thank you to the staff and volunteers at C Line stables and The Center for Therapeutic Riding for hosting this event!

Enjoy these photos from our wonderful day.

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