Wednesday, October 31, 2012

Happy Halloween

Halloween is a pretty big deal for my little girls.  The talk about what to "go as" is a pretty serious discussion in our house.  Julia usually narrows it down between two different possibilities early on and flip flops from one to the other for a long time.  This year Julia chose Cinderella and we just so happened to have Cinderella's Wedding Gown from our trip to Disney in 2011 and it still fit.  Lucky me ;-)  Then we went to the mall and she fell in love with some butterfly wings and decided she would go as Cinderella with wings.  She looked adorable!  I know, I know, I'm not the most unbiased person.

Emma usually goes with the flow.  She likes to dress up but hasn't really shown much interest in choosing her own costume so it's pretty much been whatever we have in the house but not this year.  In August we were shopping at TJ Maxx for who knows what and she spotted a rack of Halloween costumes and did her happy wheelchair dance and squeal until I took her over to check them out.  That is once I figured out what was making her so happy!  She wanted this candy corn fairy costume and was over the moon with it and so I bought it for her.  Of course.  It was the first time Emma has pretty much ever asked for something when we weren't giving her a choice between two items.  She spotted it, got me to take notice and then smiled all the way to the register.

The children from our block went trick or treating as a group like they did last year.  The ladies went with the children and the guys stayed to give out treats.  Our one neighbor had a bonfire and everyone met there to give out candy for the houses.  It's a great way to enjoy the night and the children have SO MUCH FUN!  The adults do, too.  We really love this neighborhood!

This year we recorded Julia's voice saying Trick or Treat onto a Big Mac type program on the iPad and   Emma was then able to just touch the screen to say Trick or Treat. It was a big hit with the children - they were happy to hear Emma say trick or treat - and the people at the houses we visited.  I think Emma liked having her button.  The only thing that wasn't ideal is her external speaker stopped working and we had to rely on the built-in speaker, which isn't very loud :-(  I think we'll use her birthday money to buy a better external speaker - if anyone has one they like, please let me know in the comments section.  She had a logitech and it stopped working after only about 20 uses!

Julia's favorite treats are the lollipops.  She did not get that from me or Chris.  Emma was all smiles when she received chocolate.  She had not met a piece of chocolate she didn't love.  She does get that from me.  One house was giving out sodas.  The children were running to that house and yelling to each other they were getting soda.  It was so funny!

Hurricane Sandy came through town but, thankfully, our neighborhood was mostly unaffected so we had Halloween as usual.  During the storm we did put on the Halloween music we borrowed from the library and carved a pumpkin.   It was the first time Chris and the girls ever carved a pumpkin.  Yikes!  How did it come about that I'm the only one in the family that ever carved a pumpkin?  Emma loved how messy it was, Julia loved tracing the stencil onto the pumpkin and helping me toast the pumpkin seeds for our snack, and Chris was surprised at how hard, yet satisfying, it was to carve.  We all agreed it was a lot of fun and will do another one or maybe two next year.

We wish everyone a Happy Halloween!

Tuesday, October 30, 2012

8 Years

I remember when Chris asked me to marry him very vividly.  It was after Hurricane Isabella came on shore and caused us to cancel one night of our planned weekend getaway.  I was cleaning up the yard from all the tree debris wondering why it was taking him so long to come over and help.  I soon found out the reason was he was buying me flowers and a stuffed animal along with a bottle of bubbly.  I was so in love with him.  I still am.

The weekend we were engaged my Mom snapped a photo of us and my Dad called it Young Love.  We didn't realize it at the time - because we thought we were older to finally have found love - but it really was young love.  We still laugh about that moment.  I think we'll remember it for many years to come.  Thanks, Dad, for the sweet memory!

Our wedding day was lovely.  I had been sick leading up to the day and had some good medicine that helped me get out of bed and ready for the day.  All my worries about things going wrong were immediately forgotten.  I was surprised at how excited and relaxed I was at the same time.  I couldn't wait for 2pm to arrive - I wanted to see Chris so badly.  I remember that I kept joking with him that he can't kiss me when I come down the aisle and that he has to wait until after the vowels and the priest tells us to kiss.  I find it quite funny that it was me that gave him a kiss when I landed at the end of the aisle and he had such a funny grin and told me under his breath with a laugh that I'm not supposed to do that.  It made me laugh because I had totally forgotten about that and was so caught up in the moment and my love for him.  There was no doubt at all in either of our minds that we were meant to be together.  There still isn't.

And when it was over, before the party, we shared a moment when we both couldn't believe we were married.  And it felt so strange to call someone my husband and him to call someone his wife.  We had a good laugh at it.  I love that the photographer caught that moment and we didn't even know it.  We were oblivious to everything going on around us.  

It feels fitting that we share our 8th anniversary today in the aftermath of Hurricane Sandy.  It all started with a hurricane.  Since then we've had lots of sunshine and weathered some storms together.  We have our bad days but they are much fewer than our good.  

To this day no one makes me laugh as much as Chris.  No one makes me feel so happy and loved like Chris.  He is an amazing husband.  He is the most amazing father.  Eight years ago we were still young love.  Today we are wiser love.  And I wouldn't have it any other way.  

Happy Anniversary, Chris!  I'm looking forward to many more years with you by my side.

Wednesday, October 24, 2012

To cut or not to cut?

"When life gives you a hundred reasons to cry, show life that you have a thousand reasons to smile."

- Author Unknown

Emma lives this quote.  I have never met a child that is happier or who can find fun in the mundane more than Emma.  The other day we were at the store and I saw a shirt that says "Smiles all the Time" and so I had to buy it for Emma.  The child radiates sunshine.  There is an amazing glow that just radiates from her - it's something that most people notice and never forget about her.  Even if they have only met Emma once I'm often reminded by them that the thing the most remember and associate with Emma is her amazing smile and glow.

Yesterday we visited Emma's orthopedic surgeon for our 6 month visit.  We thought most of our follow-up visits with her various specialists are now more "routine" and that things with Emma were going in the right direction like I discussed on this post.  We were wrong.  The x-ray they took showed her right hip is 50% out of the socket, likely a result from her recent growth spurt.  They looked at her hight changes from the last 6 months and couldn't believe how much she has grown.  I can.  I move her around all day, every day and my girl is LONG and, thank goodness, lean.  Supermodel material for sure!  But I'm not about to let that industry get their hands on my little angel.

Anyway, I digress.  A long conversation about the x-ray results, Emma's range of motion, etc. followed.  Her doctor wants to do an adductor release (and hamstring release surgery as long as she's under) on her within the next 3 months.  Time is important here because if we don't get it in time then Emma will face a hard, painful surgery on her hips.  There is still a chance Emma would need the painful bone surgery even after having the adductor release surgery but it would buy us a lot of time.    The adductor release surgery is a more minor (not that anything is minor when talking about your child having surgery) procedure with a much shorter recovery and much less pain.  He said on a scale of 1-10 with 10 being the hardest surgery the bone surgery is about a 7-8 and the adductor release surgery is a 0.1.  I likened it to ear tube surgery vs. cochlear implant surgery and he thought that was a great analogy.

Emma's doctor is really good and patient.  He took the time to talk to me as long as I needed - which is probably why he often is running very behind in his appointments because he takes his time with patients and families.  I appreciate that quality in a doctor.  I asked so many questions because, of course, this was the one visit with the orthopedic surgeon Chris didn't attend.  You know....because they are routine at this point and we didn't expect it to be an interesting visit.  Her dr. is 100% sure this is the correct surgery for Emma.  I asked about a second opinion and he said all the dr's at that hospital would give the same opinion as him and that we should be careful who we consult with and make sure it is a dr. very familiar with children with spastic quad CP.  Our hospital, DuPont Children's Hospital, has the largest practice for children with spastic quad CP in the country and so they have a large base of experience to draw from when making recommendations.  They do lots of research, they have leading doctors.  They are a top hospital and the quality of care Emma receives is amazing.  We really do love it there but whenever someone talks about putting my child under anesthesia and then cutting her muscles I think it is good to consider a second opinion.

When the doctor was drawing what he would do during the surgery Emma was very interested.  She thought it was all SOOOOOOO funny.  She couldn't stop laughing.  There isn't much that gets my girl sad besides bedtime and getting left behind when someone walks outside.

I took all the information from the doctor and shared it with Chris.  I also sent emails to some friends with children older than Emma to get their opinion on the surgery.  This is a very common surgery for children with CP so it's highly likely everyone we know with CP that is older than Emma either had the surgery or considered it at some point in time.  I also posted this to our CPMoms yahoo group for input.  And I came up with another question for the dr., emailed it to him and had a response from him in my mailbox this morning.  We're not sure what we'll decide, but it's likely we'll pursue the surgery because we sure would like to avoid the major surgery if we can.

Last night I took a long, hot shower.  There is just something about water cascading over my head that instantly relaxes me and that is exactly what I needed.

It's been a long week!  Last week at a "routine" eye exam the dr. told me that Emma has cortical vision impairment.  She is highly functioning with it but might need some accommodations on print size as she progresses in school and help with spacial perception as she continues to work on her power chair.  We'll deal with this as necessary just like we do everything else.

And Emma will be our guide to helping us remember - lest we forget - that we have a thousand reasons to smile.

Monday, October 22, 2012

Fall Cuteness

Fall is my favorite season and the month of October is my favorite month.  We start it off with Emma's birthday and end it with our anniversary and in between we are busy with pumpkin picking, hayrides, fire pits, marshmallow roasting, halloween costuming, Sesame Place visiting.....you get the picture.  How can I not love this month??!!!

A bit of what we've been up to in photos:

Julia is an expert pumpkin picker.
Emma picked out her own costume this year!  This is very exciting stuff!
Ridiculous Cuteness!  I love these children!!!!
Relaxing at the gardens

Rolling down hills always leaves the girls in fits of giggles

Wheelchair accessible treehouse - Julia leads the way!

Friday, October 19, 2012

Baking Bread

Sometimes it seems like we work days, weeks, months to see the littlest improvement in Emma's motor skills.  Day in and day out we modify our activities so Emma can more fully participate while we position her just so to work on sitting or standing or any other number of things.  The little changes have become such a part of our routine that often we don't even notice we are doing it anymore.  It's easy for this Mommy to get so wrapped up in doing things all day long for my children that at the end of the day I feel like I've actually accomplished very little that is tangible.

We've been improving our diet over the last few years.  Trying to eat more organic fruits and vegetables, buying food from farmers markets and minimizing our consumption of processed food.  I checked the book Artisan Bread in 5 Minutes a Day out of the library and then renewed it and finally decided to actually try and make a loaf.

Have you ever read the ingredient list on the bag of bread from the supermarket?  What the heck is most of that stuff?  This book made making beautiful crusty bread sound easy - and I'm all about easy.  You just have to give my crock-pot a glance to see how well used it is and you'll know I don't have a lot of extra time in the day to get a good meal on the table for our busy family.  I also remember the delicious bread our neighbor from Yugoslavia used to make us when I was little and how good it tasted with a bit of butter.  So with a bit of hesitation - because I have a hard time rolling out pre-made pizza dough let alone make some dough from scratch - I decided to make some bread.  And it actually seemed to take less than 5 minutes hands-on to make it.  There was a bit of time to mix the dough, let it rise and bake it in the oven but my total hands-on time was definitely no more than 5 minutes.

There is something about the smell of fresh bread in the house.  Mmmmm....it is so comforting.  And very tasty.  And really easy.  I feel like I've accomplished at least one thing on the days I bake bread.  Something tangible.  And it feels good.  Oh...and the fact that it's delicious, too, is a nice bonus!

Sunday, October 14, 2012

Emma's Birthday Video!

Emma just celebrated her birthday.  She did it in style with a pajama party with a few of her friends.  She smiled the entire party and enjoyed every minute of it.  Julia proclaimed that it was so much fun she wants a party just like Emma's.  Now, that's a party!

I try and do a birthday video each year for the girls made up of photos from the year.  They love looking at them all year and I do, too.  It's a great way to capture what happened that year and I hope will be a treasured keepsake for them as they grow older.  This year I was late getting Emma's video completed.  I've been busy ;-)  Between all Emma's days off from school and trying to fit in a bit of work I didn't have extra time to create her video until this weekend.

I always love when the videos come together.  Each year I'm amazed at how much the girls grow and all the wonderful experiences they enjoy.  Having the videos really make me feel good and not just because the girls LOVE to watch them over and over and over again.  They make me feel like our girls are living a wonderful life.  Like their lives are full of love, joy and real life experiences - which is exactly the way I want them to experience childhood.

I'm especially proud that for Emma's videos I don't see disability.  I see ability.  I see life.  I see vitality.  I see joy.  It is not designed like this for her annual video - I am not editing out the *disability* experiences.  You'll see the many pieces of equipment Emma uses to participate more fully in life.  I take photos all year long and when I look at them I don't see Emma as disabled.  I see a typical little girl that just happens to need a bit of help to get around.  I see a child who gets out and about more than a lot of other children.  I see a little girl who draws people to her.  I see a little girl who lives life with wild abandon.  And it makes me want to be more like Emma.  To enjoy each day more fully.

Emma, you inspire me everyday.  Thank you for giving me the honor of being your Mommy.  Happy Birthday!