Tuesday, June 28, 2011

Victoria Flick 5K Recap

This weekend we participated in the Victoria Flick's Friends Foundation 5K Bubble Run.  It's an annual event that celebrates the life of Victoria Flick whose passed away at the age of 7 years.  The Foundation was created by Victoria's amazing parents who raise money and donate it locally to charities and families with special needs children to help pay for equipment that insurance won't cover.

We never knew Victoria, but we are sure we would have loved her!  We've seen many photos of Victoria and Emma reminds me of her a lot and Victoria's friends and family remark on the resemblance between Emma and Victoria.  I think it is the sparkle in their eyes and ready smile :-) We met the Flick's through our church and were immediately welcomed with love when we first attended the 5K in 2009.  It is an amazing feeling to be with Victoria's friends and family and have our entire family - and most especially Emma - greeted with open arms.  After the 5K there is a huge party at the Flick's house and we love to enjoy the BBQ, swings, games and pool after a morning of exercise.  I would like to invite all our family and friends to join us for this amazing celebration next year.

Here are some photos of the event.  Swoop, the Eagles mascot, was in attendance and joined Julia, Emma and Chris in their race across the Kiddie K finish line.  Chris ran the 5K and beat his goal time by more than 2 minutes while finishing 3rd in his age group.  I planned to walk the 5K course this year, but Julia was walking it with me and decided it would be more fun to walk a few minutes then head to the finish line to cheer Chris when he finished.  She was not nearly as excited about the walk as I was!  Needless to say, next year I'll have to ask Julia to ride her bike or something so I can actually finish the course while Chris races.

This year three charities received funding, with Variety getting a $10,000 check!  Wow!  Is this family amazing or what!  I am so happy to say that Emma is one lucky little girl and will receive her very own Freedom Concepts Discover 12 bicycle courtesy of Variety!  The bike should arrive sometime this week and we know the Flick's are a huge part of how Emma is getting such an amazing gift!  For those that aren't familiar with special needs bicycles, the price tag on one supportive enough for a child like Emma is in the thousands and out of reach for many families - including us.  Without the very generous gift of a bicycle from Variety we would not be able to afford one and Emma would miss our on a typical right of childhood - the joy of riding a bike.  Thanks to Variety and families like the Flick's, Emma will get the opportunity to enjoy her very own bicycle!

We feel so blessed to know this wonderful family and that we can participate in the annual 5K run/walk.  We're already looking forward to next year's event and hope we will have some family and friends join us!

Thursday, June 23, 2011

First year of preschool completed!

Class photo after Special Olympics event

Emma finished her first year of preschool with a bang!  The last month or two of school when I would go to pick her up I would hear glowing reports from her teachers and therapists.  They loved telling me all the great things she was doing in school!  Using a switch to access and play computer games- check.  Picking the body parts requested when playing with Mr. Potato Head - check.  Choosing items that were the SAME or DIFFERENT when asked to pick a matching item from a field of two - check.  Pulling markers out of the holder to participate in crafts - check.  Attempting to move her arms with the songs in circle time - check.  Using the crawler to scoot all over the place during motor group fun - check.  Taking a couple of steps in the walker - check.  Participating in group activities with her peers instead of just watching everything - check.  Eating her lunch at school with the 20 other children instead of refusing food so she could just watch the kids and wait until we got home to decided to eat - check.
Max reading to Emma.  Max told the teachers to leave her on his shoulder when they wanted to move her.

The list of good things Emma was doing by the end of the school year just goes on and on.  This is a huge change from most of the rest of the year when Emma would actively not participate with her teachers/therapists because she was too busy looking at all the kids.  Watching every movement, getting distracted by anything at all that was NOT what the teachers wanted her to focus on.  Oh, Emma loved school - circle time, centers, snack;  she just didn't want to participate in anything with the teachers/therapists - she only wanted to be with her peer and watch them and smile at them and have them bring her toys to play with while she ignored the adults.

Emma playing with Theo during "beach" week
It was hard to say goodbye at the end of the year.  Everyone really embraced Emma, immersed her in full inclusion with all her typical peers, went out of their way to try and figure out how to adapt things for her skills and needs.  They kept me up to date on her happenings and sent me some photos of her playing with her friends.  The children really LOVED Emma and always were playing with her.  It's great how children are - they seem to flock to Emma and accept her just the way she is and always want to play with her.  Emma's school included Julia in many of the activities in the afternoon when we went to pick her up and Julia often asked me why should couldn't go to Emma's classroom instead of her pre-school because she loved Emma's school - mostly because their dramatic play area that changed each week was a favorite of hers and the preschool she attends doesn't switch up dramatic play that frequently!

Julia participated in Special Olympics, too.
Emma received a wonderful gift from her teachers - two photo albums of photos that capture her experiences in school this year.  Emma really LOVES to look through the albums while we ask her about the photos.  It is such a nice way for Emma to remember her first year of school and for us to get a much richer look into her days there.  Unfortunately our scanner isn't working so the photos I'm posting here are photos I took on my phone.  Suffice it to say there was a LOT of playing and crafting going on in the 3 year old classroom!

Harrison asked for a photo with Emma.  He always looked out for her and wanted to make sure she was happy.
It will be hard to move on to a different team for both Emma and me.  It's hard for me to trust new people with my non-verbal, non-mobile little girl.  It's hard for Emma to be around people without anyone from her family that knows all her subtle communication cues.  This year at preschool was a great experience for both Emma and me.  Her team commented on how much they will miss Emma and I had a couple of tears in my eyes when we said our goodbyes.  I will miss our first school Team Emma when we move and hope that our future experiences are as good as or better than this first year of preschool.

Monday, June 20, 2011

Hat Free!

Before I go forward on this post, I just want to give a huge shout out to my Dad and to my husband for being such wonderful Fathers.  Happy Father's Day!  This year I didn't do a post for Father's Day so I wanted to make sure I got a shout out to them.

Now, onto the hats!

As you know, Emma has a profound hearing loss in both her ears - she is deaf.  In addition to being deaf, she also has very delayed motor control for her head and her body.  When her first cochlear implant was activated at the age of 14 months it was ridiculously hard to keep the magnet on her head.  And, if the magnet is not on her head she cannot hear at all.  I made it my mission to keep the magnet on her head for all waking hours and it was a losing battle - all the tape, headbands, etc. would not keep the magnet on her head.  We battled this for quite a while and found that the magnet would stay on her head the best when she wore a cap (pilot cap ordered from Hannah Anderson) and even better when I put toupee tape on the magnet and covered it with the cap.  When her second cochlear implant was activated at the age of 2, it was pretty much impossible to keep both CIs on her head with just the tape and so we continued to use the cap.  When we were at home we tried to keep the cap off as much as possible because: 1.)  Emma hated wearing the cap and, 2.)  I just loved to see her head and hair all done up without a hat!  But, really, to keep the magnets on her head so she could hear we had to use the cap or resign ourselves to putting the magnet back on her head the 1000x/day that it would fall off.  Remember, she doesn't have the best head control so her head was mostly always touching a seat or the floor or something else and the magnet would easily rub off from Emma turning her head back and forth.

This summer we finally have a handle on keeping the CIs on Emma's head so she can hear during all (or mostly all, they do occasionally fall off!) waking hours.  And while I would gladly keep putting a hat on Emma's head if it was the only way that she would be able to hear, I'm happy to say that we have just recently been able to go Hat Free!

A few things have happened to make it easier to keep the CIs on her head.

  • Emma has better head control.  Although I know her PTs think it's not so great I'm thrilled with how far she's come with head control and know that it will only continue to get better! 
  • Her head is not always rubbing against something.  She is commando crawling these days and if I lay her down on her back on the floor, she will have rolled over to her belly within seconds so she can get moving.  Emma also loves walking in her gait trainer that does not have a head rest for her and her ChildRite chair (the big Bumbo seater she uses) doesn't hit her head, either.  
  • Emma is using the Nucleus 5 CIs with the compact rechargeable battery and it makes the unit much smaller and easier to keep on her tiny ears
  • Our awesome audiology team found some new gear that helps keep the CIs on her head and I am so very grateful for them.

I'm completely delighted that we haven't had to use the pilot cap for the last few weeks!  Even at school we are able to tape the magnet on her head and use the ear gear to keep the CIs on her head with only a few touch-ups to the tape each day.  And I feel like things have gotten so much easier because, really, keeping CIs on a child with cerebral palsy is not for the faint of heart!

It's wonderful to see Emma - her beautiful blue eyes, her beautiful hair all done up in a matching ponytail, her huge smile - without her hat.  I can't even put into words how great it makes me feel.  It really is the little things in life that can make us appreciate everything a little bit more.

Friday, June 17, 2011

Week 1 of Summer Vacation

This week was the first week of summer vacation for the girls.  No school.  No schedules.  LOTS of Mommy time, sleeping in, eating snacks, playing with friends.  It is a week off that they so very much deserved after their great efforts at school this year.  I also like to think that I deserved it, too :-)

Our summer will be jam packed this year.  The girls are both going to do a bit of summer camp - Emma will attend as part of the extended school year, Julia will attend camp at her preschool.  I tried to convince her to try the Y camp, but she loves the one at her preschool because she just loves the bus rides to field trips, the amazing water play area, and the weekly visitors so we decided to honor her wishes and let her go to that camp.  We also have a great family vacation planned and will move before the start of the school year so this summer is going to be b.u.s.y!

With all the craziness planned for the next few months I wanted to start the summer off with us doing fun things together - not spending too much time in the car or hanging out at home play dates where I don't get to see the girls much because they are off playing with the other kids.  I wanted to make their first week of summer vacation our own to create lasting memories.  The kind of memories that will get me through the initial adjustment when Julia starts full time, full week kindergarten (*sniff, sniff*).

We spent the week together packed with lots of local FUN!  Monday we went to Emma's two therapy sessions at the hospital - the only therapy sessions she actually had this week - and decided to pack our picnic lunch and hit the Can Do park afterwards.  We met some friends there and enjoyed the great weather, the swings and slides.  Tuesday we went bowling, a favorite activity that is so wonderfully inclusive for people in wheelchairs!, with some friends followed with lunch at IHOP and an evening trip to Rita's Water Ice for Emma's school fundraiser.

Wednesday we took advantage of the $1 movies and saw Kitt Kittredge American Girl.  Both girls loved it and sat captivated through the entire movie while eating lots of snacks!  We had a picnic lunch in their bedroom that included some great music on the iPad and LOTS of laughter. The best part of the week was on Wednesday night when Roy Halladay hosted our {hospital} support group, Chronically Cool Families, in his VIP Box Suite!  He donated tickets, Philly Phanatic dolls, food, drinks, time on the field, t-shirts.  Wow!  We are so very honored that he would think of creating such a great evening for our families!  He had planned to meet with our group, but it was a double header that day and he was pitching in the game so we got to meet Mike Stutes who was just so sweet with the kids.  Take a look at some of the photos from the evening.

Thursday morning the girls slept in since we were out late at the game.  We decided to have a lazy day at our friend's development's pool.  It was a bit chilly, but we swam a bit and then the girls played and ate poolside.  We had a leisurely afternoon followed by a game of hide-and-seek in the evening.  The girls LOVE to play hide and seek and we often make it a family game.  Emma is not so great at it, though, always giving away our hiding spot by giggling loudly and uncontrollably.  I think this is her favorite game.  I think it is Julia's favorite, too, especially when us girls hide together while Chris finds us.  She is all giggles, too, but hers are much softer than Emma.

We wrapped up the week with a photo shoot at Kiddie Kandids and I'm happy that the photos of the girls together and Emma alone turned out great (Julia always takes a good photo, so I don't worry about her photo shoots at all).  Emma tends to smile and look at the camera much better when I'm not behind the camera so I do like to get some professional shots every now and again to supplement my photos.  She sees me too often and finds no reason to pay any attention to me regardless if I am acting like a goof to get a good photo of her!  We rounded out the day with a trip to a mobility company to discuss options for transporting a power wheelchair with our Toyota Sienna.  Let's just say that we are not really prepared for the huge changes a power chair would make in our life so it's a good thing that we are easing into the power chair for Emma.  Actually, she's more easing into it than we are - she has to demonstrate that she can stop and go relatively *on command* to get it approved by insurance and we still have a lot of practice ahead of us to make that happen.

What a great week!  I just love spending time and doing fun things with my girls!  We try so hard to manage Emma's many appointments so they don't get in the way of us living our life like a typical family.  Many weeks we are successful and I still never take those weeks for granted.  This is one of those weeks that will carry me through the recently *few and far between* weeks of endless appointments.

Life is good.  God is great!  We are enormously blessed.

Monday, June 13, 2011

Preschool Graduation thoughts

Julia the first day of Pre-K and last day of Pre-K.  What a difference 8 months makes!

I've been blessed to have a great group of "Mom" friends - we met at the hospital shortly after our first born children came along and so all our kiddos are right around the same age.  Over the years we've add many younger siblings to the group and the kids just have so much fun the frequent play groups.  Who knew that I'd meet some of my best friends at a hospital new Mom session 5.5 years ago?  Who knew I would wind up loving all these little children so much and thoroughly enjoy watching them grow up together, have their own conversations, and declaring who will be his/her future spouse!

Recently the Mom conversations have been centered around preschool graduation and amazement at how our children are ready for kindergarten already when none of us are quite ready yet!  It seems that I might be the only Mom in the group that didn't shed some tears at the end of preschool program.  In fact, I smiled a whole bunch.  I just LOVE watching all the little personalities come out in the end of year show.  Seeing which children shout, dance, jump about, which children are waving wildly at their parents, which children are taking the whole event very seriously and barely smiling (Julia falls into this category!) because they are so intent on not making a mistake.  I guess on some level I'm a bit sad that I won't be sitting in the preschool audience for Julia again, but I couldn't focus on that when I was so full of joy for getting to watch her in the first place!  I know that not every parent gets to enjoy these moments and that makes me treasure them all the more.  

The children went back to their classroom after the show while the parents were treated to a slide show set to music of snapshots of the children taken throughout the year.  I did find this a bit bittersweet and my eyes teared up a bit, but that didn't last very long because we headed on into the classroom for the presentation of their certificates.  It was just lovely!  The teacher described each child with a few sentences and then the child proudly walked up to get their certificate and gift from the two classroom teachers.  Julia was so proud of herself and we were so proud of her.  She really grew a lot in preschool - she is more outgoing, confident in her abilities, able to stand her ground with her peers.  I've loved watching her grow in such a supportive, nurturing preschool environment.  And I know she is ready for the next phase of her life - kindergarten.  I am sure we picked the perfect school environment for her and it's a bonus that it's a nice bonus that it just so happens to be the school where Chris works.  

Truly, I am not ready for Julia to start full-day, full week kindergarten.  Luckily for me we have the summer together and lots of fun stuff planned that I hope will make it easier for me to pack her up and send her off to her first day of school with her Dad.  I'm sure that I'll be shedding more than a few tears that day and probably more tears that week.  

And me not shedding any tears at Julia's preschool graduation ceremony?  Well, maybe I am getting better at living in and celebrating the moment - something I've been working on for what seems like forever!

Monday, June 6, 2011

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.

Sunday, June 5, 2011

Goodbye Preschool

When you have a little one under foot it seems you notice the passage of time much more than without any little ones.  Lately I keep looking at my little girls in wonder at how they are growing so quickly and maturing at an astonishing rate.  It doesn't seem possible that Julia is finishing pre-school up this year.

Preschool has been a wonderful experience or Julia.  She has a tendency to be shy when around new people and preschool helped her break out of her shell.  She made lots of friends and loved each of her teachers.  The Learning Express school and people were so wonderful to us!  I couldn't imagine a better preschool environment or experience for Julia.  And so I find it a bit hard to see Julia graduating and moving on to kindergarten.  She is so excited about going into kindergarten and regularly "practices" for it by doing the worksheets in the workbooks we have for her.  I am amazed at how much she is looking forward to the Fall and her new school when I am, truthfully, feeling bittersweet about the transition.  I know Julia will continue to blossom and will love going to school with Chris.  The school she will attend will continue to nurture her kind and sweet personality while challenging her academically.  She is definitely up for the challenge!

But......I will miss my afternoon buddy.  My one-on-one Tuesday mornings with Julia and my field trip Fridays with both my girls.  This year has been one of my most favorite years of all!  We finally are in a routine where our schedule is not driven by therapy and doctor appointments, it is driven by going places that are interesting to us and we are able to do so much together as a trio.  I feel forever blessed that we had this year together!  And I look forward to the new adventures that await us, even if I am feeling a bit of premature nostalgia now over Julia's preschool years.

Thursday, June 2, 2011

Ability Expo Recap

We went to an Ability Expo in New Jersey recently.  Holy Smokes!  When I went to the website to add the link I realized the expo was a month ago.  Time is really flying by!

Attending the expo was a great experience for us!  Equally great was that we left Julia for a day with the grandparents and so we could "play" with all the cool items without catering to her boredom schedule.  Since Emma loves people watching she was game for staying as long as we wanted and was thrilled to try out various equipment.  For the first part of the day we had Emma's iPad hooked up to her chair with the articulating mounting arm from RJ Cooper and it generated a lot of interest and we eventually moved it to the car after lunch so we could move at a quicker pace through the Expo.  We were pleasantly surprised at how easy it was to chit chat with some great parents of young children and it was fun to compare equipment, notes, experiences from the different areas on the East Coast.  Meeting so many other parents is something I don't think we really expected but we really enjoyed.

The highlight for Emma was when she tried out a tricycle at the Freedom Concepts booth.  We were so surprised to have her actually start to pedal the bike on her own!  She pedaled twice and smiled the entire time.  The bike needed a couple options that they didn't have there and the representative took down the measurements and configuration she would need to send us a price quote.  We received the quote last week (Yikes!  They are expensive!) and we are working on getting some funding to buy it for Emma.  How cool would it be for Emma to have a bike to ride?  Just SOOOO cool in this Mommy's opinion!  We'll keep you posted.

Today I talked to Emma's PT about the tricycle and found out the hospital has the exact trike configuration that Emma would need.  When I told him how serious we were about trying to get one for Emma he brought out the bike for her to try out.  I was shocked he never mentioned the tricycle to us before and he said that it never occurred to him since we are working on so many things with Emma and he only gets her one day a week.  Hmmm.  Emma surprised everyone by pedaling around the therapy area for about 25 minutes and fussed excessively when her PT tried to move her to another activity that we decided to let her ride for another 5 minutes.  We had to help steer the bike an sometimes line it up a bit so her foot was at the "top" of the cycle so she could pedal but Emma did 85% of the work in cycling around and it blew almost everyone in the therapy area (they all know Emma well!) away.  Her PT even said he got goose bumps on how good she did.  That's my girl!  And because I'm sure you want to see it for yourself, here is a short video from today.  Enjoy!

There were loads of cars and vans in all kinds of configurations to accommodate a wide range of equipment.  We looked at the converted vans and decided that we aren't really ready to take that leap right now.  Our minivan is paid off and we want to get a lot more mileage out of it before we get a new one.  Besides, the power chair that Emma has is only a loaner for now and I'm not sure when we'll have to give it up.  Emma's progress with the chair isn't going as quickly as I imagined and we are still quite a bit away from meeting the criteria of moving in a set direction and stopping when directed that is required for our insurance to consider buying a power chair.  We learned about a lift that would help us transport a power chair and still use part of our third row seating.  We are going to take a look at one in the showroom sometime soon.  If anyone has any experiences with these lifts let me know the pros and cons!

We looked at a special tomato jogging stroller that was super easy to push.  Emma will need the special tomato liners for the jogger and that takes the price up a bit.  We are considering this jogger but want to try some other joggers first.  I think we might be able to use a Bob Revolution jogger for a couple of years and there is a good resale market on them for when we need to move to the bigger jogger.

We also looked at manual chairs and power chairs.  Emma tested out two power chairs - the C300 from Permobil and a sit to stand chair from Mobility 4 Kids.  Emma seemed to perk up quite a bit when the sit to stand chair was moved to the stand position and she could motor around.  Since there were a LOT of people and booths around the Expo we did not let Emma drive without help.  Although she would like laugh and laugh if she ran someone over, I can guarantee you that she would be the only one laughing :-)  It was just a quick test in this chair, but it made me wonder why other companies aren't making sit to stand power chairs?  Here is a brief video of her testing out the chair and driving in the stand position.

If you have an Ability Expo coming to your area I highly recommend spending a bit of time checking everything out.  It's so rare to have all this equipment and experts under the same roof and to compile all the testing and information we had in one day would likely take us ages through our local hospital or durable medical equipment provider.