Progress, softball and other updates

We are fully immersed with life!  Is that a fancy way of saying we are busy or what??!!!

Emma has been getting glowing reports from school since Spring Break.  I mean, it is a bit ridiculous how good they are and I'm actually getting calls with the therapists so excited about her progress that they just have to call and tell me rather than write it in her communication notebook.  They really are that excited and I'm actually taking time to bask in the glow of the good reports!  I don't get them too often and I have noticed that they usually come after long breaks from school....so Emma's refusal to do anything that seemed like a bit of physical work during Spring Break seems to be paying off in dividends.  That's my girl!

We are still in tour mode of schools for Emma's kindergarten and likely her elementary school education.  We have a couple more tours and evaluations lined up and then I guess we'll meet with our school district to discuss our thoughts before we as a team decide her placement.  I do think it will be a hard decision, though, with pros and cons to the various placements.  We might even wind up with a hybrid plan since the district seems very open to creating an education placement specifically for Emma that addresses our wants for Emma.  Stay tuned for further details.

Julia has been enjoying her first softball season.  When asked if she wanted to go on a special lunch cruise on the river she declined in favor of her softball game that is scheduled at the same time.  She has been practicing a lot and it is paying off.  Sunday she had her first hit at bat and then had another hit as an RBI.  Way to go, Julia!  At tonight's game she had another two hits out of three at bats and her confidence in her abilities is gaining with each game.  We are excited to see how the season unfold for her and her team.  Tonight they had their first win and the girls were fired up over winning.  I just love all the energy they have and wish I could bottle a bit for me.

At school Julia attended an assembly for a movie about a child in a wheelchair and his friend who could walk.  Julia didn't mention it to me until the school told me about it and so I asked her to tell me about the movie.  She told me it was about a boy in a wheelchair who didn't have a ramp to get outside his house and play in the yard so when his friend came over to ask him to play he couldn't.  The friend then got some wood and built a ramp so the child in the wheelchair could leave the porch and wheel down to the yard to play.  Julia liked that the friend helped but didn't really comment on the wheelchair.  I took this opportunity to ask her some questions about what she thought about having a sister in a wheelchair.  She told me that she doesn't think Emma minds using a wheelchair and I agreed with her.  She then told me she loves having a sister in a wheelchair because Emma wins lots of prizes and she  shares them with the family.  I didn't understand this so Julia told me that Emma gets to go to lots of amusement parks, special rides on the Blimp, tickets to Disney on Ice and that it's just great because she always lets Julia go with her!  So there you have it - I'm so glad I asked ;-)

As for us, well, Chris is glad to be back at work in his normal routine after a week long stint at jury duty and I've been doing a lot of spring cleaning and still have a long ways to go.  It keeps getting cut short because of all the insurance calls (appeals in progress for the powerchair denials...), kindergarten legwork and visits along with the never ending sea of paperwork that I try and fit into the few days a week where I have a few hours without children around.  Plus I'm trying to purge a lot of our possessions and it just isn't going as easy as I thought because it seems I have a proclivity to want to hang on to things that I'm not longer using for "just in case."  Maybe it's time to watch an episode of Hoarders to kick me into high gear?  Knowing that we will eventually move again keeps me from moving this task to the bottom of my to do list where I would like it.

It is with sadness that I tell you sweet Gavin earned his angel wings.  RIP our little superhero.  Our prayers are with your family.

Settling In

I plan to do more posts on our Ireland trip that includes lots of photos, but when our cable and internet was finally connected at the new house I clicked "yes" on the update for iPhoto and it wiped out my entire photo library with all my photos from the last 5 years.  We do have it backed up - thank goodness! - but for some reason it won't restore and after spending many hours working on it Chris is finally taking the computer into the Apple store to see if they can get it resolved.  I'm antsy to get back to editing my photos and want to create a photo book of our vacation so I'm looking forward to having all my photos back and available to me.  Once that happens I'll post more photos and for now I'll give a bit of an update on our new house.

Moving is a lot of work.  It's not just the packing and moving, but also the changing your mailing address, getting all the utilities scheduled, working with a new school district, learning a new neighborhood, meeting new neighbors, finding a grocery store, etc.  It had been a very long time since I moved so I had forgotten how much changes with a move.  Add in moving states with a special needs child and it adds an even bigger dimension to our move.  But, even with all the work involved I think we made a great choice for our move!

The house we are renting is about the same size as our other house but it is laid out better for us.  All the floors are hard wood making it super easy for Emma to navigate around in all her rolled equipment.  There is also a play room on the main floor with the living room and kitchen and the girls love playing in there and I love not having to pick up all the toys from our living room at the end of the day.  And since the three bedrooms are all on the same floor the girls have their own room and have settled in nicely to their big girls beds!  Julia picked out princess bedding (of course!) for her twin bed and Emma is using the purple bedding we had for her full bed while spreading out and enjoying all the extra room she has to roll around at night.  We were nervous about giving her a bed but she seems to be making the transition just fine and I have a video monitor that I can use when I feel the need to "check" on her.

Our neighbors are super friendly and mostly around our age - and Phillies and Eagles fans to boot!  There are kids galore on our street for the girls to play with and they are playing like old friends already.  The girls are even invited to a birthday party in a couple of weeks for some of the kids on the street.  I cannot really express how wonderful it is to have children on our street for the girls to play with!  It lets me have a small bit of down time from chief entertainer of the girls and they are having a ball learning to navigate relationships with their peers.  Emma is also included in all the playing and the kids and parents just roll with the flow with Emma - not making any deal at all about her disabilities and going out of their way to make sure Emma is included in the conversations and play.  It is such an inclusive environment and I haven't really found that much when put into a group of strangers.  It so warms my heart!  Chris or I usually navigate Emma around with the kids, but she is showing more interest in walking in her walker and riding her bike when the kids are around.  I think all the activity and Emma's desire to keep up with all the kids - who move about at the speed of light! - will have her working that much harder to gain more independent movement.

Chris' commute was cut by a little less than 2 hours per day.  Yes, his commute was 3 hours round trip per day and is now about an hour per day.  He has been getting home before 5 pm and taking Finnegan and the girls for a walk so I can make dinner without all the 5pm whining.  For some reason, the whining in our house hits full throttle right when I'm making dinner - it's something about the 5 o'clock hour that has the girls cranky since they were only a few months old and has stuck around for all these years.  Needless to say, I'm totally thrilled that the girls are actually outside having fun instead of inside bored and whining even when I try to include them in my dinner preparations.  Chris also has a lot more energy since his commute was reduced which makes it easier for him to continue training for his next marathon in November.  He can get some runs in before work or after work since he has more time on both ends now.

Finnegan has adjusted to life without a large fenced in yard better than we expected.  Since she is 9 years old now she doesn't have as much energy as she had in her puppy years.  She is enjoying all the walks she gets throughout the day and smelling all the new scents on the various walks.  She is even navigating all the hard wood in the house, including the stairs, much better than expected and it seems like she doesn't mind the wood or change in flooring as much as she does in all other houses.  There is also an 8 month old black lab next door to us and Finnegan and Buddy like to "talk" to each other through the driveway.  I'm glad Finn has a friend at our new house because she had several dogs she played with through the gates at our old house.

All in all we are settling in quite nicely, albeit with still some boxes left to unpack and some window treatments to make.  We rented the house for a year with the option to continue our lease if we are interested after the year is up.  I have a feeling it is going to be a good year - bring it on!

Moving and a bicycle

This summer is going by in a flash!  We have been having a lot of fun, but have also been quite busy planning for our move.  It seems that we are getting closer to having everything settled - our move date into the house we are renting and a renter for our house.  I'll be happy when we are moved and settled in and life can go back to it's normal hectic way!

We've been packing up the house bit by bit and trying to get rid of items we won't use.  Surprisingly, we use most of the things we have in our house.  On the plus side that means that we have been doing a fairly good job of managing our "stuff" over the years, on the minus side it means that we are pretty much average when it comes to amount of "stuff" we have.  I always wanted to be one of those minimalist people but I guess that will have to wait - maybe I can achieve that when the girls are off to college, but I doubt I'll ever be able to live like that.  The really good thing is that we are no where close to the people I see on the tv series Hoarding:  Buried Alive!  Watching that show helps me put our possessions in perspective ;-)

I'm probably be offline until we are all settled in the new place next month.  I'm sure I'll have a great update on Emma's great bike riding skills :-)  She received her Freedom Concepts Discovery bicycle from The Variety Club last week!  We are BEYOND thrilled that Emma received this gift and hope to put a lot of mileage on it very soon.  Unfortunately, she can't ride it until we receive the spacers for the pedals (her feet are a bit too short to reach both pedals) that should come in about a week.  While we wait we are planning all the great places for a bike ride.  Can't wait to get it up and running.  Thanks so much Variety!!!!!!

Random musing

It's been two years since I worked in at office and some days I miss it.  There is just something about pulling together with a team, launching a new product, tracking sales, creating marketing materials, writing journal articles, traveling the world that made my work fulfilling.  But there were other parts of it that I don't miss like the crazy hours, travel away from my family, executive decisions that seemed to change like the wind.  

These days I find that I'm a different person than I was when I worked in an office.  My life perspective has changed and I am living a more balanced life.  I was missing a lot of the "play" part of life when I was working in my Marketing position.  And while I do sometimes miss working in an office, it is usually fleeting.  I know that my next job will have a different focus ad, while I'm not sure what that focus is just yet, I am confident that I will know it when I find it. 

I can't imagine not having the last two years with the girls.  We spend our days laughing a lot, playing together and with friends, enjoying trips to museums, parks and local events.  We are happy together, know how to have fun, and anyone who is around us can tell that we are enjoying this one life we are given!  My two children are very different in abilities but that doesn't stop us from living our normal life.  Actually, I often think that we have more fun than a family with children of similar abilities.  It is so fulfilling knowing that I am making a difference in the life of my children while realizing they have refocused my life for the better.  

Today I am doing some packing for our move.  I came across a paper from graduate school that made me think about my office/home life today that led to this post.  My marketing professor had us each write down how we perceive our fellow students.  We went through 19 months of school as a class together and knew each other well.  The professor then compiled all the responses for each individual and presented us with our own sheet of how other perceive us.  There are no names attached to the comments and they are all positive.  I find it comforting that so many of the comments are similar, which means that I am pretty consistent in my interactions with others.  It's a great gift this professor gave us.  I'm glad I found it since I do think about it every now and then.  I'll have to make sure I put it somewhere it won't be lost in the move.  

Crawling Videos

I've been talking a bit about how Emma is crawling all over the place.  It's more of a commando crawl and it just thrills us that she is able to get herself where she wants to go.  She started out able to only move a foot, then a couple of feet, and now she is all over the house.  I'm so proud of our Emma!  She is so determined and motivated and all her hard work on trying to crawl is finally paying off for her.  She even has the bruised legs to prove it!

I'm tickled pink to report that she has mastered the art of turning around and throws a fit when when she crawls to the stairs and we turn her around so she doesn't fall down them.  Since she can now turn she cries a bit then just runs herself around.  We are keeping a really close eye on her because we aren't going to order another custom-gate for the stairs  - by the time we get it we'll be moved and have no use for it!

Are you just as excited as I am by this news?  Well then you'll want to see her in action so I'm including some videos - Enjoy :-)

Notice how she is getting so much stronger and able to hold herself up on her forearms with her head in the air.  This is a new skill that Emma is getting better and better at the more she moves around.

Here is one of her taken from the front:


Here is one of her showing how she turns.  Keep a look out for the first few turns at the 30 second mark and the 40 second mark:




Because you are probably wondering - yes, we are planning on moving before the beginning of the school year.  No we didn't sell our house.  Yes, I am a bit jealous of all the people who put their house on the market and sell it quickly.  We have found a house we want to rent in the approximate area (no houses for rent in the school district we wanted would let us bring our dog!) we want to settle in and think it will be a good fit for us for a year.  In the county we want to move into we had 2 houses to look at that would allow dogs.  Two!  Yikes.  Good thing one had a very open first floor that was all hard wood and would allow Emma to navigate the house quite easily.  We are going through the application process, etc. now so our fingers remain crossed it will all come together seamlessly.  Chris is almost giddy that his daily roundtrip commute to and from work would be cut to 1 hour from 3 hours. - and I'm so happy for this, too.

Good News: Hips!

One of the specialists Emma sees on a regular basis is an orthopedic surgeon.  Since Emma isn't standing or walking like a typical 3 year old and she has high tone in her legs there has been some concern about her right hip not sitting in the hip socket correctly.  Typically once it starts to get 20% out of the socket the doctors start to get concerned.  Emma's has been out as much as 38% out.  At her visit 6 months ago she was out 33% and the doctor gave us some initial discussion/indications about possible surgery in her future.  He also gave us certain stretches to do that could help her hip go back into place or - at the very least - help prevent it from pulling out further.  Chris and I were less than thrilled about that discussion and left with a renewed interest in adding stretches to Emma's daily routine.

Yesterday Emma had her 6 month follow-up and the x-ray showed that she is down to 27% out.  Yeah!  We are headed in the right direction and not discussing surgery at this time.  The doctor even mentioned that at her 6 month folow-up he will not need an x-ray unless his exam on her gives him concern and, if that happens, she'll go down the hall and have one done.  It is soooo nice to leave a doctor's appointment with good news for a change!

I have a feeling Emma's love of commando crawling and walking in her gait trainer are helping her make great gains with her hips.  Chris is also focused on stretching Emma each night as part of their routine and we will continue to make this a priority so we can keep surgery at bay.  We took the last two month off from horse riding because of the cold and snowy weather and hope to start Emma riding again in May.  Riding the horse helps give her legs an extended stretch and movement while she is enjoying a ride around the farm.  I've noticed that Emma's trunk has gotten weaker lately and mentioned this to the doctor.  He said the horse riding should help with her trunk muscles so I'm wondering if the break in riding is the reason for her "floppy" trunk lately.  I'm not sure if its the sudden change to warm weather or not, but I'm looking forward to seeing if starting up riding again will help her control her trunk muscles better.

Power Chair Testing

Emma is one lucky girl!  Besides the obvious reasons......she now has a TDX Spree power wheelchair on loan to her so we can give her a lot of hands-on time learning to drive a power chair.  For better or worse, it seems that this is what we need to do to convince our wheelchair clinic and the insurance company that she is ready to get one of her own.

The chair came with a left handle control, but I spent a couple of hours this week moving the control to the right so that she can drive it better since she is right side dominant.  We also spent time loading and unloading the chair from the car using a suitcase ramp (loaned to us with the chair!) and it became VERY clear to us why most people would want to retrofit their car once they are set on using a power chair.  I'll just say that we're going to take ample advantage of any nice weather outside to give Emma a chance to learn driving in our driveway rather than doing all the lessons at the local mall!

True to form, Emma did not disappoint us with her desire to get moving.  I'm pretty sure she has made the connection that the chair moves when she moves the joystick.  Getting her to control the movement of the chair - especially going forward which requires her to push the joystick up, a movement that is difficult for Emma - will likely take some time.  Then there is the learning of not to knock into things, people, drive down stairs, etc.  

I'm super excited about the possibilities available to Emma with power mobility!  

Here is a video I took of Emma yesterday.  It is the first time she was in the chair since I moved the control to her right side and I think she did an excellent job.  You can see the chair is a pretty good fit, but I'm trying to make an apt. with our wheelchair clinic to get it fitted for Emma and hope that will allow her to be even more successful at driving.  Way to go, Emma!

And now for some more Cerebral Palsy facts:

Cerebral Palsy is one of the most common congenital (existing before birth or at birth) disorders of childhood.  About 500,000 children and adults of all ages in the United States have the condition.

There are 3 types of CP:  

1.)  Spastic - causes stiffness and movement difficulties (this is the type Emma has)

2.)  Athetoid - leads to involuntary and uncontrolled movements

3.)  Ataxic - causes a disturbed sense of balance and depth perception

Crawling

A while back I did a post on an affordable crawler Emma received.  Since Emma was too small for the crawler we made quite a few adjustments to make it work for her.  Emma did manage to crawl around with the modifications but the crawler was not ideal.

This week the crawler her school purchased (one a bit smaller than what we have) arrived and I was able to see Emma try it out.  Immediately, she started scooting all around the room and it was evident that the belly sling made it much easier for her crawling rather than the foam covered board we were using.  Not a big suprise :-)  When we got home I looked at her crawler again to figure out a way to make it work with the belly sling.  And then I got and idea!

I can't believe I didn't think of it before since it's so simple.  I did an internet search for a local machine shop and gave them a call before heading over there .  The reason we couldn't use the sling is because the bar holders the sling slid into was tall and the lowest setting was still too tall for Emma.  Well, the machine shop took off a couple of inches on the frame where the sling slid into and - voila! a crawler that is a good height for Emma when she uses it with the sling.  To use it, I put the sling into the holder bars and then move them to the lowest level hole and then go even further down so the sling is not in any of the holder holes but rather sticking out the bottom a bit.  This even allows her to use her hands a bit more to crawl and her palms are starting to open up a bit in this position.  The bonus is that it didn't cost a cent to have it modified thanks to the incredibly nice machine shop owner!  If you are still looking for an affordable crawler you might want to consider buying the crawler we did and having it modified a bit for size.

So simple, yet so powerful.  She is still learning how to crawl a bit with the sling because it allows her to flip forward a bit and doesn't make her keep her feet/knees on the ground, but she is learning fast!  Yesterday she was crawling around the house for about 45 minutes before I thought to take some video of her.  She gets slower and her feet don't move as well the longer she moving with the crawler - it takes a lot of energy to move! - but even after 45 minutes she was still moving so I decided to take some videos to share.

Here is the video I took.  She starts to crawl around 45 seconds into the video.  Enjoy!

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.

For Sale

It's official - our house is for sale. The sign was just mounted in our yard.

I leave you with a quote from Chris: "Oh, boy. I hope that doesn't become a fixture. By that I mean that I hope I don't have to decorate the signpost with Christmas decorations."

That makes two of us. Wish us luck!