Cooper Car driving

The Cooper Car that we were using with Emma to help get her ready for a power wheelchair is back in action!  Thanks to the fabulous John at our wheelchair clinic who fixed the car for the children to drive!

It has been a couple of months since Emma last drove the car.  She had been pretty consistent at getting the car moving and was starting to slow down/stop on occasion before it broke.  I took some video of her driving the car this week when she got a chance to get back in the driver's seat and I have to say she did really good for not driving a couple of months.  

We used a different switch that doesn't work as well as the one we have at home - you can see in the video that she is attempting to hit the switch and isn't always successful.  We borrowed a switch that works with only the slightest touch from the Assistive Technology department and that seemed to work much better for Emma, but I didn't capture that one on video since we only used it for a very brief time.  

Emma still likes to go and has very little desire to stop - even when she is about to bump into walls or her therapist!  We're working on that ☺ but for now we are glad that the car is back in action and Emma will get more time to practice with the car and move her one step further towards getting a power chair of her own.

Halloween Story Time

Our local library hosts some great events for the children and we try and make all the shows around the holidays because that is when they bring in the really great performers.  Last Friday the library had Pam the Kindersinger put on a Halloween show and so the girls dressed up in their costumes and we headed on over.  Julia is a cat this year and Emma is a sailor girl and they are both completely adorable if I do say so myself!

Anyway, they had so much fun!  Since Chris gave me an iPhone (what did I ever do before I had this phone???!!!) as an early anniversary present, I pulled that out of my purse and took some video.  Julia was all giggles and I just LOVE her like that and wanted to capture the moment.  Emma was so into all the children and the singer and trying to move and I did capture a bit of her on video but she didn't cooperate too much for the camera - she's like that sometimes :-)  

I thought I would share a bit from our night out here.  Enjoy! 

Quick Update

We've been busier than usual around here lately so I haven't had a chance to post much.  Although the girls and I have been busy doing {mostly} fun activities during the week, Chris has been very busy at work and staying late some evenings.  Thankfully, though, our weekends have been filled with fun activities outdoors since this Fall we are having fantastic weather - and I would rather enjoy the lovely outdoors instead of hanging out at my computer.  

This is a bit of a mish-mosh post about our recent happenings:

Emma has completed 3 weeks of pre-school so far.  I have also completed 3 weeks of pre-school.  I tried leaving Emma at school last week on her own and it didn't go as easily as I hoped.  She is on to the fact that I've been leaving school and all she does is cry and stare at the door and when it opens and someone who is NOT me walks in, she loses it.  Even if I am there and out of sight and the door opens and closes and she screams and cries - this only started happening after I left her there on her own, it didn't happen before since I don't think it even occurred to her that there was a chance I would leave her there alone.  It's quite heartbreaking, really, and I've started staying at school again while trying to fade into the background to give Emma a bit longer to adjust to school without me.  

School looks like fun, right?

All smiles while Mommy is in view!

I am ok with a little crying for her when I leave, but all out crying for hours at a time is not a worthwhile venture to pre-school in my opinion as she is neither learning anything nor participating in any therapy services while screaming at the top of her lungs for hours while waiting for me to return.  Let's hope next week goes better as I am excited to use the two mornings/week when both girls are in school to get in at least an hour workout each day.  I really need to start a consistent exercise schedule for both my mental and physical well being.

We went to Lowes the other day and had the new experience of seeing both girls sitting in a shopping cart.  Since Emma can't sit unassisted she usually goes shopping in her stroller or sits in a toddler feeding chair in the cart, but we saw some carts at Lowes that were designed for children and had a bottom at the perfect foot level to prevent slipping out of the cart and decided to give her a try in it and she did great!  Both girls loved sitting together for the 10 minutes we were in the store, even if Emma did use Julia as a prop for a lot of the ride.  Emma even reached out and attempted to turn the steering wheel, which made Julia (and us) so happy!  Julia is the best big sister ever!

 

It was late at night and Emma was already in her pjs, but she loved sitting in the cart with her big sister!

On a recent Field Trip Friday we purchased an annual pass to the zoo and have used it a couple of times already.  This weekend was Boo at the Zoo and the children dressed in costumes and did some trick-or-treating as they wandered around the animal exhibits.  Even though the traffic and parking were a nightmare, we were so happy that the zoo itself wasn't terribly crowded.  The gorilla there was the highlight of today's adventure - he came right up to the window and sat there for a long time posing for cameras and playing with the crowd.  He seemed so human.  I could have stayed in that area for hours just watching him.  

Songs of Love

Have you heard of Songs of Love?  Songs of Love is a nonprofit organization dedicated to providing personalized songs for children and teens currently facing tough medical, physical or emotional challenges, free of charge.  I LOVE this organization.  How amazing is it to have a song written just-for-you?!  

Around Emma's second birthday I requested a Song of Love for Emma.  I thought it would be something wonderful to share with her since she was hearing pretty good with her cochlear implant.  We received Emma's Song of Love right before the activation of her second cochlear implant and I was super excited to have Emma hear her very own song with two ears!  

I knew that Emma would love her song - she seems to enjoy music - but what I didn't realize is how much the rest of us would love her song, too!  Julia loves Emma's song and I'm so glad she plays a prominent role in the song so that she isn't jealous that Emma has her own song and she doesn't have one.  In fact, she often requests Emma's song whenever we are listening to music.  

I LOVE the song they wrote for Emma - it's the song I used in her 3 year slideshow video that many of you commented on.  The writer captured the sweetness of having Emma in our life perfectly and every time I listen to it I feel like the luckiest Mommy alive to have two unique, amazing daughters in Julia and Emma.  I especially like to listen to the song with the girls on the "tough" days - you know, the days when my back is hurting, we have loads of appointments, people make stupid comments to us, etc.  This song always picks-me-up on those days.

I was lucky enough to talk with the songwriter/singer on the phone several months ago.  The organization was doing a lot of outreach for votes to win a grant in the Chase Community Giving Campaign on Facebook and they were making phone calls and email requests to supporters.  The writer/singer of Emma's song called us and I told her how much Emma and our entire family LOVES her song.  It has really touched our lives and I was so thankful to get a chance to thank the writer personally.  

If you know anyone who would benefit from a Song of Love, please let them know they can find out more information at their website http://www.songsoflove.org/   And, if you are looking for a worthwhile charity to make a donation to, I highly recommend this wonderful organization.  

First taste of independence

Emma has been trying to get moving for a long time but hasn't been that successful.  She tries to crawl but her arms have a hard time reaching back over her head once she scoots forward once and she gets sort of "stuck" in the commando crawl position.  But, she always keeps on trying since she is extremely motivated to find some way to gain independent movement.  

I had thought that a crawler would be great for Emma, but the version that I was aware of was ~$500 and our insurance wasn't about to buy one (and I was saving the fight in me for the gait trainer battle).  A friend told us about a crawler that her daughter was using at school and we found a similar one on the web for about $60.  That really got our attention!  

Emma received the crawler as a birthday present and when it arrived I found that the crawler is actually too big for Emma.  She would need one that adjusts to a lower height than the 13" lower limit but I hadn't seen any of those until I did some more looking around.  The smaller crawlers are more expensive but I did find one here that seems to be a more affordable smaller crawler in case anyone is in the market to buy one.  


We decided to make some adjustments so our crawler could work for Emma.  We worked with her occupational therapist to find a way to customize it and Emma took off on it - literally!  Emma LOVES scooting around the house in the crawler.  It's really her first time to have some independent mobility and she is really starting to explore the house in a whole new way.

The crawler that she received is the Adjustable Crawl Trainer purchased at Flaghouse.com shown here:

We found that we are able to use the adjustable sling to have Emma work in high kneeling, but it doesn't work at all for crawling.  So, we took a piece of wood and cut it to fit between the crawler bars.  The wood was cut so there are a few inches of no wood at all at the bottom of the crawler so that Emma can move easily.  I covered it with some semi-thick foam - purchased at JoAnn Fabrics - to make it comfy for her belly.  I also made a little cover (from a suede-like material with a princess crown embossed in it!) for the foam covered board to make it soft and look pretty.  Then I took foam, covered it with the same fabric and tucked it around the bars so that Emma would have protection from the crawler bars.  The crawler is still a tad bit too big even with the modifications that doesn't stop Emma from moving all around the house in it!  

To keep her from falling off we're using the same "seatbelt" that we use on the potty - a waist trimmer that has velcro on it that we purchased for $5 at Five Below in the exercise section.  We typically use this inside out where the neoprene material faces out and the nylon fabric faces in so that it doesn't get Emma sweaty.  Also, we make sure there are shoes on Emma's feet when she is using the crawler because when we first tried it out without any shoes or socks Emma got a nasty floor burn on her toe from using it to push off so much.  Using shoes eliminates the risk of getting another sore on her toe and gives her more traction to push off and get moving quicker. 


I don't have any new videos to post, but here is one of Emma on the crawler the first day we used it right after her bath - so her hair is a bit wild, she is not wearing socks or a seatbelt and we are making sure she has both now! - and having a lot of fun.  There is a lot of video here, so just jump to about 1:50 for when she started getting the hang of moving.  

Stepping up

Emma has a huge desire to get moving.  She also loves to stand.  So, getting her in a gait trainer has been in the forefront of my mind for over a year now.  It was last November that Emma first tried out a gait trainer during her PT session.  I did a post on it here.  

Since that time I've been working to get a gait trainer for Emma in our house.  There is a lot of talk about gait trainers in the CPMoms group that I am on and the KidWalk by Prime Engineering came highly recommended.  So, in addition to the Rifton Pacer that we tested during PT I wanted to have Emma test the KidWalk.  It took months to get a demo KidWalk to test and while we were waiting we kept putting Emma in the Rifton Pacer and she kept not walking in it.  When we finally were able to test out the KidWalk for Emma she took some steps!  I was soooo excited for her.  The rep. even lent us the KidWalk to take home for Mother's Day weekend this year and you can see a picture of that here.  By the time we returned the demo we knew that was the right equipment for Emma.  We've been working on getting Emma her own KidWalk ever since and I'm extremely *hopeful* that we will have one before Christmas.  Pretty please, Santa Insurance Man.  

In the meantime, we were gifted a Pony walker from a local family whose daughter outgrew the Pony a while ago.  We've put Emma in in quite a few times (you can see a couple of photos here), mostly when we are outdoors, and she stands well in it but hasn't really tried walking in it.  Then, in mid-September one of Emma's friends received a new gait trainer and lent us her Rifton Pacer to use while we are waiting for the KidWalk to get approved and arrive.  We have been putting Emma in the Pacer a bit since the wheels are a bit easier to get moving than on the Pony walker we have and she amazed us last week by taking her first few steps.  Below is a short video of the first two steps, but in total that afternoon she walked about 2 feet!  All on her own!  The next day she walked from the hallway all the way into the bathroom until she ran into her potty seat that was leaning against the bathtub - a total of around 3 or 4 feet!  

Notice how Emma "listens" to me to move her foot forward and then her other foot forward.  Following directions on motor skills requires a lot of things to come together for Emma and she can't always make her body do what we ask her to do.  So, I love the video for both the steps and the following directions.  My girl continues to amaze and inspire me!

In addition to taking these steps, Emma has been sleeping differently the last month or two.  She has always been a belly sleeper with her arms at her sides and very little movement through the night - unless you count when she wakes up crying and gets moved into our bed (ha!).  Lately she has been all.over.the.place in her crib.  She rolls from side to side, scoots to the top, turns her body 180 degrees, gets caught between the slats, moves her covers all over and generally causes quite a commotion in there.  It's WONDERFUL!  But at the same time it's been horrible in the sleeping situation as it's causing her to bump her head or get her foot caught or get cold - all of which usually ends up with her (and us!) waking up several times during the night.  I know we need to find a different sleeping situation for her rather than her crib but we don't have anything figured out on that just yet.  We'd love to go to a full mattress to give her more room but the girls share a room right now and there just isn't enough room.  Maybe when we move.....whenever that happens!  If anyone has any ideas on good bed options please leave me a comment.  I really would love some input.

It seems like quite a bit is starting to come together for Emma's independent movement right now.  I'm so excited for her accomplishments and hope they continue.  I have seen Emma accomplish something amazing only to make me wait months to see it happen again - I hope that is not the case this time!  

Oh, and FYI - In my next post I'll give an update on Emma's crawling.  I know some people might find the information on the crawler Emma is using, so check back soon for all the info. on it.

Embracing Differences

My monthly post is up on Hopeful Parents.  Click here to read it.

Some inspiration

Today I put a video up at the Kidz blog.  It's very inspirational and worth a look if you have a moment.  

"When I let go of who I wanted her to be, and just let her "be," she completely flourished, and I reveled in knowing she's perfect just the way she is!"

The message in this video is so inspiring to me.  I love to come back and look at it when I need a gentle reminder in the incredible possibilities that are achievable when we embrace our differences.  


If you liked that video, you should also take a moment to read this post on Hopeful Parents.  Because, after all, we could all use a reminder of how incredibly perfect our children are every now and then.

Ice Skating

We live near an ice rink that many olympic figure skaters use to train at and have not really spent much time there.  Since we are trying to move away from this area we thought it would be a good idea to check out what they have to offer while we are still here.  When we found out there are ice skating lessons for all levels of skill we let Julia choose between swim lessons or ice skating lessons for her Fall activity.  I may have led her in the direction of choosing ice skating since I thought it might help her with her sense of balance.  Let's just say that she takes after her Daddy in the falling down department.

I'm happy to say that Julia chose ice skating and absolutely LOVES going to lessons.  She is doing much better than I expected on the skates and hasn't complained once about falling on the ice.  Her teacher told us that she has the perfect hip motion for the skating moves they are doing and Chris did not really like to hear that at all even though it was meant as a compliment!  I think out of the small group of children in Julia's class she is probably the one who stays in the upright position the most.  I won't comment on how shocking that actually is to us.

The lessons have followed the same routine each session.  Before getting on the ice each session they practice how to fall (to minimize the hurt) and how to get up from a fall.  Julia has this part down pat.  Then, the kids skate out onto the ice and pick a stuffed animal from the instructor's bag of tricks.  Julia always picks the kitty cat.  They then throw the animal away from them, skate over to retrieve it, and skate back to the starting line.  They do this a few more times before the instructor shows them new moves and then she uses a dry erase marker to create a skating path for them to follow.  This usually has some parts with forward, side and backwards skating along with a bit of a circle skate.  This takes the longest for all the kids to navigate and there is usually a few falls.  Emma finds this all VERY entertaining to watch.  She even seems very interested in getting out on the ice so I have to contact the building manager to find out if they have any options for getting Emma on the ice.  

Ice skating has been such a big hit with Julia that she asked to sign up for the Fall II session.  This session has all the skaters perform in a show before the holidays which would probably be a lot of fun to watch since the skaters range from very beginner like Julia all the way up to very good skaters with personal coaches.  I think we may just have to enroll her to continue the fun!

    

 

Oh, and when we get there a bit early we are able to see the Zambonie getting the ice ready for everyone.  Both girls love to watch the machine in action making the ice shiny so we have been working on bucking our trend of being just in time to a tad late for a bit on the early side.  So far, so good.  We might even make a harder effort to try and carry our less frazzled appearance over to other areas of our life.  

Birthday Fun!

We've been getting ready for Emma's transition out of Early Intervention Birth to 3 for a while and completed that with her first day of school last week.  All the change was quite stressful for me and I just kept focusing on Emma and thinking about how lucky I am to be her Mommy and I wanted to make her birthday special for her.

Since she LOVES being with people we celebrated this milestone with a party that included great friends, face painting, pumpkin painting, cake and good food.  The day was picture perfect so the party was mostly held outside, which was very welcome after all the rain we have had cooped us all up inside for a while.  Not to mention the fact that our house is small and getting outside gave the kids more opportunity to spread out and have fun!



I want to take a moment to talk about the gifts Emma received.  We usually don't focus on presents at birthdays since it is a celebration of life and not of presents.  But, this year Emma received some amazing presents!  I mention this simply because Emma can be a bit hard to buy for with her motor challenges but this year EVERY SINGLE present was just perfect for her!  If you are interested in ideas for presents for children like Emma, here are some that really hit the mark:

• a large musical keyboard with buttons that have different tempos and keys that you can bang on use to make beautiful music
• plush turtle constellation nightlight like the one found here.  Julia even loves this one and keeps trying to take into her bed at night, so I think that means Emma won't grow out of this anytime soon.  She is sleeping a bit better at night so far since I put this in her room and I hope this could be the reason and we all start to get a bit more sleep around here!
• leg warmers.  We used these the day of the party and every day since!  They are perfect for keeping her little legs warm since she always tends to be a bit colder than other children and they are awesome for potty training!
• a remote control car.  That is, if she can wrestle it off of the other people in the house since we all like this one.
• an outfit for Emma and a doll with a matching outfit.  adorable :-)
• iTunes gift cards.  This will let us have lots more fun getting apps for her iPad.
• a crawler so she can move herself around a bit.  She actually got this a month early and LOVES it. I'll do a separate post on this soon.

I could go on but you get the idea.  It seems like buying presents for Emma was no problem at all.

Happy Birthday my sweet little Emma!  You have lost every inch of your baby look and are now pure girl.  Our lovely little girl that brings so much joy to our lives.  Thank you for being you!

If you want to see a slideshow I put together of Emma's year in photos, click below.