Monday, March 28, 2011

Slow and Steady....Walking!

I know I've written a lot about how Emma really wants to move lately.  Scoot, crawl, roll, walk.  This what she is interested in.  Communicating with us, not so much.  Moving to get from one place to the other, sign her up!  She is not deterred by how hard and how much work it is for her to move, she simply digs in and uses 110% of her energy to achieve her goal - movement.  It's amazing to watch her and I get so inspired by it.

We've been using the KidWalk a lot lately.  Inside, outside, on the deck, at PT.  It's easy to know when Emma wants to walk - she either scoots over to the KidWalk and looks at me or when I start moving it near her she squeals with delight.  When she doesn't want to walk, she will resist getting on the seat and we know she isn't interested.  But, mostly she wants to walk.  

We've had the KidWalk since right before Thanksgiving.  We selected it after trying several different gait trainers and this was the only one in which Emma actually moved her feet.  I brought it home and we tried to show Emma how to use it to walk.  We tested it with braces, without braces, on hard wood floors, on carpet, in quiet rooms, at birthday parties.  Emma showed a huge desire for wanting to walk in it but most of the time she wound up in a position where she was sitting a bit back on the seat with her legs out in front of her and no way to get back into a standing position on her own.  To help her be successful we would hold the KidWalk in the "sweet spot" with Emma standing upright and when she took steps we would help her move forward by assisting the forward movement of the KidWalk.  I was beginning to wonder if she would learn to walk in the gait trainer on her own and if we selected the wrong gait trainer for her.

Then Emma got new DAFO braces.  And she didn't really know how to walk in them.  The new size braces, the new size shoes.  You could see her mind working to figure out how to pick up her foot with the new constraints.  It took her a while but she managed to pull it together and start moving her feet.  This, along with the increased time in the KidWalk and her huge desire to move really seemed to make things click for her!  

I'm beyond thrilled to see my little one taking reciprocal steps independently.  She sometimes goes fast, sometimes slow.  She gets caught in corners and walks into some walls.  It makes me deliriously happy!  My little girl is really starting to walk.  Her first steps.  Her first steps!  So much more meaningful to me because of all she had to overcome to achieve this milestone.  

I made a movie of her progress towards walking.  Emma is just starting to explore her world on foot.  We will help her build up stamina, learn to adjust to walking without so much tilt in the KidWalk (it can adjust to more upright positions), and take her out and about in it.  I'm sooooo looking forward to see what Emma does at the playground in her walker.  Once the weather gets warmer we'll head right on over to our local accessible playground.  I'm so proud of my little girl!

My one little word for this year is Faith.  Emma continues to remind me to have Faith that all things are possible.  

Thursday, March 24, 2011

A taste of freedom

Emma loves people.  I mean, she LOVES people.  She's the happiest at Church, ballgames, and any public event.  She just loves to people watch and be around people.  Simple as that.  

Her love of people makes it super easy for us to take her out and about everywhere we go.  She isn't a bit overwhelmed with noises or people.  In fact, she thrives on them.  When we are out in public Emma gets a lot of "sneaky" PT work - looking here and there, she's not about to let her neck flop over and miss any action!  When we are at home she always wants to be in the center of the action, in the same room as us.  The challenge with this, though, is that we are often moving about the house from room to room and we don't love to keep Emma in her rolling equipment all the time so we can easily take her with us.  If we have her on the floor and we leave to go to the bathroom or put away some folded laundry she cries because she can't follow us and she can't efficiently move to a different toy or area.  This leaves her in quite a predicament and results in a lot of frustrated crying.  

Emma's situation is starting to change, though.  She is getting really good at using her crawler to move around the house.  She is managing to turn corners a bit bitter and move from the living room to the bedrooms to follow us.  She is also starting to take more steps in her KidWalk.  She can't turn the KidWalk on purpose (she does turn it by mistake and run into things quite a bit!) and follow us around but I feel that will come eventually.  

The other day I was cleaning the bathroom and put Emma in her crawler.  I kept popping out to check on her every few minutes and found that in a matter of seconds she made her way across the floor to look outside the patio doors.  My heart melted.  Melted!  Then I grabbed the camera to capture the moment of my girl looking out the patio doors waiting for her beloved dog to return and demand re-entry into the house.  She was even yelling out the window for Finnegan! 

Isn't this the cutest photo!  I just love looking at it.  One thing that I miss is seeing Emma's little tush during the day (diaper changes don't count).  She is often in equipment that covers it or laying on her back and it's so nice to see her cute bottom in this photo!  A couple of minutes later she managed to wander under our kitchen table and I helped her spring free.  She had been moving at a very quick pace and took a small break under the table, thus her floppy position.  Once she was out from under the table she perked back up again.  

Emma's new-found bit of independence is quite liberating for her and for me.  It gives her control over getting to the toy she wants to play with, wander to another room to find someone, and a way to get into a bit of mischief.  And for me, it allows me to put away laundry and some other stuff around the house without feeling guilty that Emma is stuck somewhere without me.  

Sunday, March 20, 2011

Cerebral Palsy Awareness Day

Today is officially Cerebral Palsy Awareness Day!

I wanted to do something special for today.  I had thought about pulling together some facts and information for you, maybe even posing a video.  Then I saw this video on YouTube and thought it is the perfect video for today.  It's three minutes long and I love it if you would take the time to watch it - it would me a lot to our family.

And, if you take the next step to raise awareness for CP funding and research (plus continuing health care coverage!) with your representatives please let me know.  We'll make a short video of Emma saying thank you and blowing kisses and send it to you via email :-)  How could anyone resist that????!!!!

Thursday, March 17, 2011

St. Patrick's Day Recap

Today was a gorgeous day.  The sun was shining.  Emma had off from school to stay far away from the chicken pox that some of the kids had and with only Julia to go to school we all slept a bit later than usual.  We awoke to find that leprechauns had visited our house.  The toilet water was green, the milk was green, and there was a bag full of rainbow lollipops for Julia's classmates.  Silly leprechauns!


St. Patrick's Day is a day we celebrate to the fullest each year.  My Dad came over on the boat from Ireland in his 20s and never looked back.  Err...he might have looked back, but each visit home had him coming back here - I think it was meant to be for him to meet the love of his life and start his family here :-)  Over the weekend we created and decorated a banner to string across our living room wall.  Today there was the leprechaun visit and a trip to McDonald's for a Shamrock Shake.

Actually, Emma was just so engaged in everything today.  Since Julia was at school and Emma home with me without any therapy appointments on tap (a once in a blue moon occurrence) we got to have some good old fashioned fun.  Let me tell you she is a delight to be with, but everyone probably already knew that!  I put her in the KidWalk because she just seems to want to MOVE all the time lately.  I've talked a bit here about how she is "walking" in the KidWalk but if I'm really honest she was mostly doing a hop with both feet when no one was holding the top of the walker just so.  Anyway, today she walked in the KidWalk All. By. Herself.  With her braces on.  Yep, really!  And it just blew me away! It's so hard for her to walk in her braces since they are new and require a bigger shoe and lots more coordination than stepping in her sneakers without braces.  She didn't just walk once, she walked the length of the living room several times and came in the bathroom to find me once.  We were playing with the baby dolls and feeding them, putting them to bed in the cradle, covering them with blankets, rocking them when they cried and I kept moving the cradle to the opposite end of the living room floor each time we put them to bed and Emma would walk to the cradle to get to the babies and rock them and take their blankets off and toss them on the floor.  Did I mention she blew me away?  She also made a lot of sounds today.  Especially on our long walk where we saw a sure sign that spring is almost here - the blooming crocus flowers!  Bring on the good weather.

Julia didn't eat too much of her lunch today because her wiggly tooth is getting "wigglier" and it hurt to eat her PB&J.  No worries, Shamrock shakes to the rescue!  We hit the drive thru on the way home.  Let me tell you, Emma went bananas for the shake!  She screamed and yelled at me everytime I tried to give her some real lunch food until I gave her more of the shake.  Needless to say she had a shake for lunch with a side of lollipop and she enjoyed every minute of it.  I was thrilled that she showed an interest in using her tongue to lick a lollipop and will consider the lollipop used for therapeutic purposes!  We spent the rest of the day outside enjoying the beautiful weather.  Julia was on the move with her scooter and car, Emma was on the move on the lawn.  She kept moving off the blanket I laid down for her and came up with lots of grass stains on her stockings.  I love it!  Since she really was intent on moving and I didn't want her to scrape her face with her scooting around I decided to bring the KidWalk outside and she managed to walk a bit more in it.

Emma started out on the far back corner of this blanket, with both shoes on!
We had a dinner of Irish sausages and fingerling potatoes followed by more time outside.  It was a lovely St. Patrick's Day and I'm hoping all the activities of the day will result in a good night's sleep for all of us.

I wish everyone a Happy St. Patrick's Day and leave you with an old Irish Saying:

May you live as long as you want, and never want as long as you live.  


This post I remembered to include some information on Cerebral Palsy for Awareness!  So, here are a few more tidbits I'd like to say:

  • Emma has CP, but it doesn't have her.  I don't recall ever meeting a happier child that is thrilled with life despite it's many challenges.
  • Having Emma in our life is a joy.  I love her exactly the way she is.  I hate when people say they are sorry about Emma or they feel bad that Emma has CP.  I'm not.  Emma beat LOTS of odds and fought to overcome CMV to join our little family.  She teaches me things every day.  She has a lot to teach us if we are willing to learn.
  • CP is a lifelong condition.  It can be managed effectively with the help of therapy and special equipment.  Most of this is not covered by traditional insurance.  We have had to rely on Medicaid to supplement Emma's primary insurance.  It is important to remember that many children on Medicaid have chronic conditions that their primary insurance does not fully cover.  Now, more than ever, we have to be sure our politicians are not cutting the insurance coverage that so many families with special needs children need just stay afloat.

Tuesday, March 15, 2011

Good things

I sometimes feel like I'm on this crazy roller coaster ride with ups and downs.  Parenting really is a trip!

Last week I had a rough on Monday when I felt it starting to sink in that all the motivation, desire, and drive I have for Emma to communicate is not really going to result in Emma talking (either verbally or through her iPad or other device) if she does not have the motivation to communicate.  As her speech therapist put it to me, Emma has three things working against her for speech:

  1. it's hard motorically (both to vocalize and to push the correct buttons on a device) for her to communicate.  I brought up eye gaze systems and that is something we might explore further, but her school is also wanting to pursue more low tech options to capitalize on all Emma's social desires.
  2. her attention span is short - if anyone comes into her view she stops everything she is working on to people watch.  While this can be used to our advantage when working on PT type things, it goes against us big time in communication.
  3. her motivation to communicate is not the same as mine.  She can get a whole lot communicated through a smile and a cry and eye gaze and, while this might work now, it is not the most effective means of communicating in school or when she becomes an awkward teenager and can't rely on her stellar cuteness to get her by.  Getting her a communication mode that she can use when I'm not around and when others can't figure out what her smile or cry means is what has given me more than a few gray hairs recently.

So last week I spent a significant amount of time trying to figure out a way to combat the three communication hurdles and putting some ideas I had into action.  Time will tell if they work, but one thing is certain - we will not stop working with Emma on gaining further communication skills!

After getting through Monday, though, the rest of the week had some fantastic surprises for us!

One of the most exciting surprises is that we finally had a couple more people interested in a showing of our house.  We made the house spotless and very welcoming for the showings this weekend and are hopeful that we will get a positive response.  We heard from the one person that they liked the house overall, but there were a couple of things they didn't like so they are not interested in another showing.  We haven't heard back from the other person, yet, and figure they probably aren't interested in making us an offer but we are still a bit hopeful that this spring is the time when someone decides to buy our house.  It really is time for us to move on to a more accessible home and we are praying that we find a buyer sometime soon.

Emma also had some exciting surprises up her sleeve.  She thrilled us when she started to take some steps in her KidWalk.  She actually took several steps in sequence, albeit without her braces and in a very forward leaning position, and walked over to the dog and then over to her sister and started tickling Julia's back.  It was so FUN to watch.  Another thing she did was sit in a Fisher Price booster seat (without the tray attached) at a friend's house and eat a pudding for a snack.  The seat had minimal support and I was certain Emma would not be able to sit in it but I had no other available options besides my lap so I decided to give Emma a try in the booster.  She amazed me in her ability to sit next to her friend and eat without lots of support.  Her trunk strength and sitting is really coming along nicely and I need to revisit positioning her in the Tripp Trap chair we have for brief periods in the day.

But the most surprising part of the weekend goes to Julia and her wiggly tooth.  It appears my baby is going to start losing her baby teeth to make way for her adult teeth.  The bottom right tooth is quite wiggly and is making Julia a bit nervous.  She wanted to know if it will hurt when it comes out, if she can still eat her food, and if the tooth fairy will visit her and leave something under her pillow after she loses her tooth.  I am not really ready for Julia to start losing her baby teeth.  After all, I just brought her home from the hospital 5 short years ago and loved her through the painful process of getting her baby teeth.  Sigh!  It feels like she is growing up so quickly!

Life seems to be going by at breakneck speed.  The girls are getting bigger, stronger, and sweeter with each passing week and for that we are extremely thankful.  Life is good!

Thursday, March 10, 2011

250 Post Mark

I just passed the 250 blog post mark - wow!  It just amazes me that I've been blogging just under 2 years now and have 250 posts.  I hadn't realized the time passing (you know, because I've been busy doing so many other things :-) and then I log on and the number of posts just jumped out at me.  Begging me to acknowledge it and so here I am writing essential my 251st blog post in honor of the first 250.  For some reason, I find this post and the topic pretty darn funny!

I remember when I was thinking of starting a blog and wasn't sure if it was the right thing for me or my family.  There is the whole public vs. privacy stuff to think about, and we were still adjusting to our new path in life and I wasn't sure it was a good time to open myself up.  But I kept thinking of how I found so much comfort in reading blogs when we were learning about Emma's diagnosis.  On particularly rough days I would pour over blog entries to find comfort that so many families kept their sense of humor, were living a "normal" life, and that the children -regardless of their label - were positively impacting their family and the world around them.

And so I started my blog and I've found it to be a great addition to my routine.  It's a wonderful way to keep family and friends updated on everything going on with fewer phone calls and emails - not that I don't love phone calls and emails, but it's more that life is so busy that I usually crash into bed exhausted each evening and don't get a chance to do all the well meaning calls, emails, US postal mailers that I would like to do.  I'm also thrilled that along the way I've met some amazing families who come to "check-in" on us.  These people - most of who I don't now in real life! - cheer on Emma's progress, enjoy watching Julia grow into an amazing little girl, give support to me when I need it, and don't mind my unpredictable blog posting schedule.  I've come to find that the blog not only provides a record of our happenings for my girls in the future (because I sure don't have enough time to keep a diary for them to read when I'm long gone!) but also provides a vehicle for us to connect with others and enrich our lives.

I think that after 250 posts I'm starting to find my more "relaxed" voice.  I'm doing less editing on each entry and worrying a bit less about the public vs. privacy part of a blog.  And I'm finding that I enjoy writing the posts more this way.  I also like adding in the videos and photos of the girls, so I'm sure there will be more of them to come!

Today I want to say thank you to everyone who has ever read, visited or left me a comment on this blog (I especially love the comments even though I'm not always the best at getting back to all commenters because they usually come through without an email address and I am unsure if I should respond in the post comments or not?).  I truly appreciate that you took time to care enough about our family.  Thank you!

Thursday, March 3, 2011

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

Wednesday, March 2, 2011

March Occasions


March is Cerebral Palsy awareness month.  I didn't know much about CP before I had Emma other than I had heard of it and knew of at least one person with CP although I didn't really have a relationship with that person.  When I tell people about Emma her CP sometimes comes up and when it does I often get questions about her birth and if she had a lack of oxygen when she was born.  I finally realized I got this question because birth accidents are what most people associate with CP mostly due to the commercials on television offering legal representation.  Emma had a seamless, beautiful birth and we found out later that her CP was caused by a CMV infection I must have picked up during my first trimester of pregnancy.  I later found out that CMV is considered once of the leading causes of CP in children.

I had very little awareness of CP before it touched our lives.  I know that many people still have little awareness of CP so during my March blog posts I plan to include information on CP to help spread awareness and understanding of this condition.

Today I will start with a broad definition of cerebral palsy.

Cerebral palsy includes a variety of conditions, and is not an illness or a disease itself.
Instead, it is the description of a physical impairment that affects muscle tone and movement.
No two people with CP are the same, and the degree to which it affects people varies from barely noticeable to extremely severe.
There is no cure for CP, but therapy, special equipment, and sometimes surgery can help a person who is living with this condition.

March is also the month where we honor St. Patrick's Day - an important holiday for the Irish.  I love that CP awareness uses the color green and occurs the same month as St. Patrick's Day.  For some reason that makes me happy :-)

March 2nd, today, is also Spread the Word to End the Word day.  The word being the R-Word.  Find out more information on this movement at http://www.r-word.org/.  Ellen at Love That Max did a great post on this today.  You can read her post by clicking here.

Tuesday, March 1, 2011

New Home

No, no, not for us.  Oh, how I WISH it was for us, but selling our house isn't going good.

The new home is for......Goldie.

Remember our goldfish Julia won at the carnival last summer?  Well, she is still with us.  Made of hardy stock, she is!  When she made it past a week I broke down and bought her a bowl, some stones and a fake plant sure that she wouldn't make it past an hour in her new home.  The store manager tried to get me to buy a bigger bowl saying that she would grow out of the bowl in a few months.  Really?  I wasn't buying any of it - let alone a huge bowl! - for a fish that I was sure wouldn't be around for too long.  Our track record with fish wasn't so hot and I always felt bad for the fish that ended up going home with us!

But Goldie is different.  She's hardy.  She seems to have a personality.  She swam to the top of her bowl and blew bubbles everytime I would walk into the kitchen.  She swam around and made a lot of noise if I forgot to feed her.  She begs for food.  Basically, she surprised me by having a lot in common with Finnegan our dog.  When she grew out of her bowl I waited a bit.  Wanting to get her a new tank when we moved.  But our plans to move are not going so well and Goldie really couldn't wait much longer for a new home.  On Saturday we bundled up and headed out for a family trip to the local pet store and now Goldie has a fresh new home.

It's much bigger than the bowl and has a filter so the water shouldn't get cloudy.  She seems to like it but it's taking me a bit of getting used to since you can no longer hear her when she goes to the surface to blow bubbles and talk to you.  How the heck did I ever get so attached to a goldfish????  There is a tank cover and a filter noise getting in the way of her greeting.  She is swimming a LOT more, though.  I'm not sure if it is because she has more room to swim or because we bought some new fish food (and realized we needed to drastically cut down on the amount of food we give her!) and she isn't happy with her new portion sizes.

Anyway, she settled into the new home on Sunday and she is still alive. I'll take that as a good sign.  Julia wants to get Goldie a couple of baby goldfish to join her in the tank.  I'm hoping that Goldie has broken the streak and future fish don't go belly up right away.

I'm hoping our own house adventures take off now.  Keeping our fingers crossed that our latest price reduction will bring us a buyer!