Thursday, September 30, 2010

Our Big Morning

Today was a big day for us.  Julia had picture day at school and Emma has her first day at pre-school.  Last night we spent a bit of time before bed time to pick out the outfits for today and it was fortuitous that we did since we had torrential rain complete with a power outage this morning with our power finally returning around 8am.

Emma slept soundly while Julia and I had breakfast by candlelight.  We have been watching some Little House on the Prairie episodes together lately and our conversation centered around how people on Little House didn't have electricity and used candles to see in the dark.  We were having a lovely time until the power came back on and Julia promptly blew out the candle and announced that she wanted to watch her morning episode of Mickey Mouse Playhouse (the girls watch this in the morning while I'm gathering everything for the day and loading up the car).  So much for living like those on Little House!

Once the girls were all ready to go for the day I decided to take a few photos because the girls looked so darn cute.

We seized a momentary break in the rain to head out to Julia's school.  I brought my camera with me to take some photos of her new room.  I should have taken them her first week of school but didn't.  Sometimes that just happens around here - best intentions often fall prey to lack of time.  Since I had loads of extra time this morning..........ok, since I was in full procrastination mode I figured it was the perfect day to take some photos.  Julia sure is a happy, enthusiastic Pre-K student and it shows in her photos this morning!


Then it was time to mosey on over to Emma's school to finalize some changes to the IEP, turn in all our completed registration forms and start school!  I stayed with Emma today and plan to stay for the first week or two to make the transition easier on Emma.  It's important to us that she has a positive first experience at school and doesn't cry in the beginning because Mommy isn't around.  Emma played in the pinecones, acorns, and other Fall items in the sensory table, made a Fall wreath at the craft table, joined in circle time for the songs and had a snack with her classmates before it was time to go home.  The positioning and equipment in the room didn't really suit Emma so the team is going to find other equipment that will fit Emma better.  In the meantime, I'll be bringing some items from home to try in the classroom on Tuesday to see if what we have will work well in the classroom and, if so, the school will order them for Emma to use during school hours.

Here are a couple of photos from Emma's first day.  Her name was already up on the classroom door and, as you can see in these photos, she didn't have any interest at all in looking at dear old Mom even when I took a photo of her with her teacher Miss Jackie.  It was all the kids that she was focused on and that is the way it should be.  I think she is going to love it there.

After school we picked Julia up at headed home where Emma devoured her lunch, went on the potty and gave her happy laugh when it was time to go do for a nap.  Whew!  What a morning!

Wednesday, September 29, 2010

Kidz Krew

There is a great blog that could easily be called Chicken Soup for Your Soul {if you have or love a child with special needs} but instead is simply called Kidz.  Tara, mom to the lovely Chloe, manages this blog and I am honored to be a contributor.  If you have a few moments, click HERE and check out the blog,  the Kidz Krew, and the story behind Kidz.  You won't be disappointed.

And, if you love the uplifting posts and want to be part of the Kidz Krew of contributors, please click on the Contact Us button on the left side of the blog and let Tara know - we'd love to have you join the team!

Tuesday, September 28, 2010


This week is all about change for Emma (and me!).  Firsts, lasts and unknowns.  The reason for change is that Emma will turn 3 this week and age out of the Birth to Age 3 Early Intervention Program.  All the therapists that have come to our house the last few years will bid us adieu and Emma will move on to pre-school.

The fact that we have been preparing for this transition for a while does not make this much easier on {ahem} me.  I'm not so sure Emma understands all the changes so she doesn't seem as effected as I am!  Today was the beginning of the lasts.  The last speech session with the marvelous Kate at our house.  Oh, how we will miss her!  She is an amazing therapist and person and we were so lucky to have her work with Emma and us.  This afternoon will be the last session with our OT who, while she has only been with us for a few months, was great.  Tomorrow will be the last session with the always upbeat, full of energy, Jahna!  She has been with us for about 2.5 years as Emma's Early Childhood Educator and we loved her from the very first visit.  Emma especially liked that Jahna didn't focus too much on her motor control and really was there to play and teach and sometimes have a small snuggle at the end of the session.  We are so happy that such a wonderful group of people were brought into our lives and will be sad to see their visits end.

The firsts will start later in the week when (as long as our IEP is finalized!) Emma settles into her first classroom.  Her first day of school with a whole lot of firsts - working with her teachers, aides, and therapists.  Joining a classroom of kids her age.  Testing out new equipment.  And, eventually, leaving Mommy at the door while she is immersed in school.  I think a few tears will be shed when that happens and I'm betting they are not from Emma.

And then there are the unknowns.  I have a laundry list of unknowns but I don't want to focus on that right now.  I just want to enjoy my little one and trust that we'll work these out as they come along.  

Saturday, September 25, 2010

Power Mobility

Since Emma is not able to move on her own yet we have decided to start thinking of getting her a power wheelchair.  Her physical therapists are starting her on a Cooper Car that was converted for use with switches.  To start we are only using the forward switch.  This means that we plugged a switch into the car that moves the car forward when pushed.  Eventually you can have switches for forward, reverse, right and left or a joystick for those directions or any other number of options but we are starting with forward to keep it simple before we make it complicated.

Here is a video of Emma on her first day of trying out the Cooper Car at the end of June 2010.

Not bad for her first try!   In the beginning she kept looking behind her to see who was pushing her before she realized that the car moved by her touching the switch.

Since then Emma is much more accurate on pushing the switch to go forward when we tell her to go, but she has not really demonstrated her desire to take her hand off the switch when we tell her to stop - you know, so she won't run into a wall or any people!  She is starting to slow down more and does stop occasionally, but it will take time to teach her the stop concept since she is just so excited that she can now move on her own and has very little desire to stop.  Plus, she only gets to power around in this car for about an hour a month which makes for a long learning process.  

I'm excited to see where this leads!  Stay tuned.

Monday, September 20, 2010

Our First IEP

We had our very first IEP (Individual Education Plan) session today for Emma.  There were about 15 people in attendance and it could have easily been overwhelming, but somehow it wasn't.  

Emma loved looking at all the people and turned her attention to whoever was talking and then decided she was bored of listening to us talk and started a game of peek-a-boo.  She found a couple of ladies in the room who succumbed to her cuteness and were only too happy to smile and play along with her as she bent down at the waist and looked under the table only to pop her head up a bit to smile and then she was down again.  This game went on for some time before I realized what was happening.  This is classic Emma and just melted my heart a bit more!  

We started setting some goals for Emma and the plan is to have the first completed version of the IEP tp Chris and me later this week for review.  There were a lot of goals to discuss and some of the therapists wanted a bit of time to think on them before adding them to the IEP.  We agree that a bit of time might be good because Chris and I have to digest the goals, too.  

The team is planning to use the same or similar technology and positioning equipment with Emma that we are currently using and that is very encouraging.  We also had a tour of Emma's classroom and saw her name already added to the classroom door and her cubby.  It felt so real - the idea of sending Emma off to start pre-school sometime next week.  

There are still some details to iron out but it seems likely that Emma will soon start pre-school.  There are many moments over the last 3 years that I've felt unprepared for and I could safely add Emma starting pre-school to that list.  Chris summarized it best when he said - "We just brought her home from the hospital (when she was born) last week and now she is ready to start school - how could this be?"

Sunday, September 19, 2010

Half Marathon

Today was a gorgeous day.  Low humidity, mild temperatures, a day meant to be spent outdoors.  It was the perfect day for Chris' first half marathon.  The ING Rock 'n Roll Philadelphia Half Marathon that finished in front of the Art Museum with a Bon Jovi Tribute band playing.  

There were 19,000 people that raced and Chris finished it in 2:09:28, placing 8207 overall.  Congratulations, Chris!  We couldn't be prouder of you for accomplishing your goal!  

Chris woke up early and headed up for the run and the girls and I joined him a couple of minutes after he finished the race and the girls took turns wearing his medal.  Since it was such a nice day we stayed for a while and had a picnic lunch in the shade, listened to the music and enjoyed some great people watching.  It was a great way to spend the afternoon.  

Thursday, September 16, 2010


I can't believe how quickly Julia is growing up.  She started pre-K last week and it will be her last year of part-time school since kindergarten will be full-time.  We opted to send her to school 3 mornings a week so she would spend more time in school than the 2 days/week she did last year and still have one more year of some fun field trip weekdays.

Here is a photo of her on the first day of school (9/7/10).  This year we did a bit of back to school shopping and she has new sparkly sneakers, a new backpack and lunch box to mark the occasion (not all shown here - it was all I could do to get her to pose for a photo!).  Her new teacher is Miss Sandra and the room is decorated with a Jungle theme to kick-off their first unit on animals and it feels fun just to walk into the classroom!

In this photo I think she looks so much like me when I was younger.

I was looking back at some photos from when she started pre-school at age 3.  Here she is her first day of school (1/26/09).  What a little peanut she was going off to school with her tinkerbell lunch box almost as big as her!  And, her poor little chapped lips.  No amount of lip balm/vaseline would keep them from getting chapped that winter.  

She grew up so much during that year of pre-school and summer camp.  Her teacher for both was Miss Amy and Julia loved her so much.  Here is a photo of Julia and Miss Amy on her last day of camp (9/2/09).  No trace of baby left in her at all, but she is still sweetness through and through.

My dear little Julia, I am loving watching you grow into an amazing little girl.  You teach me so much each day and I feel so blessed that you are my daughter.

Tuesday, September 14, 2010

Potty Time!

Let me just say that I'm feeling a bit out of my league when it comes to potty training Emma.  I mean, how exactly are you supposed to know when you non-mobile, non-verbal child has to go potty?  I'm still not sure but decided to give it a go since Emma seems quite interested.

Emma's interest about as much thought as I've put into the whole potty training.  I haven't figured out exactly WHAT we will do when she gets potty trained when we are away from our potty seat or only around a public restroom but I'll eventually deal with that.  Because, the truth is, if I start to think about that too much right now it would overwhelm me and I might not keep on with the potty adventure.  So, I'll leave that worry for another day.

We have a great potty that we used for Julia and it has a pretty supportive seat.  I've kept it in the powder room and whenever I go in there I used it as a seat for Emma instead of laying her on the ground.  Since she started to sit up in it quite nicely I thought we should see what she does on this if we take off her diaper.  

Sunday was Emma first time sitting on the potty.  She looked pretty happy with all the attention she was getting from Chris, Julia and me while she was just sitting there doing nothing.  And then seemed over the moon when we checked and saw she went and the whole house burst into song.  The Potty song to be exact.  The song that we sang for Julia and now are singing for Emma complete with dancing around the room.  Yep, it's incredible silly.  Yep, Emma loved it!

On Monday I decided we needed some modifications to the potty.  Pretty much everything off the shelf needs modifications for Emma so this was not surprising.  Unless Emma is very awake and interested in what is going on she tends to fall from her sitting position.  Like this -

Since I want her to feel supported enough to use the potty I added a "seatbelt" to our seat.  It keeps her from falling over and she seems much more at ease since she no longer has to work so hard not to fall.  We tested out this modification and she went to the potty again.  She was thrilled with herself.  We did the potty dance again and she kept laughing.  Yes, I think she totally gets what is going on with the potty!

Today I've tried her on the potty twice - once about two hours after her bottle and once before nap time.  She went both times.  We sang the song but didn't do the dance since Emma was ready for a nap.  We did make a big deal over going on the potty and she smiled again when we looked and saw she went.  And, what's interesting about this time is I knew when she went and was done.  She told me with her body language and that makes me KNOW that she knows what she is doing on the potty.

I'm still not sure what this means, but for now it is enough.  

Sunday, September 12, 2010

Hopeful Parents

It's the 12th of the month and my post is now up at Hopeful Parents.  Please click here to go on over and read all about my thoughts on our upcoming IEP for Emma.

Friday, September 10, 2010

Remembering Moments

It seems to me like this year is going at warp speed.  And yet, I wonder how this could possibly be when I would swear that some nights (ahem, teething has not been kind to Emma!) just seemed endless.  Strange how that happens. 

This year I find that we have had so many precious moments that I've wanted to hold on to and remember forever.  I've tried to scrapbook many of them because they are so fleeting I'm sure I won't remember them a year from now, but just as many moments that I've captured in a scrapbook layout there are many that I didn't capture.  

Julia has taken to giving me lots of random kisses throughout the day and is often telling Emma that she is the best sister in the whole world.  My heart melts a little more each time either of these happens.  Emma has begun to start approximating words if you are listening for them and then she shines like star afterwards so happy with herself that she finally was able to get out of her mouth what her mind has been so desperately trying to accomplish for so long.  She doesn't do it often or on command, but when she does my heart blows up to 1000% of its size.  

Speaking of moments to remember - Tonight we were playing outside in the tent and Julia was pretending to sleep.  Emma kept "waking up" Julia and each time I told her to say - Wake up, Julia!  This is a common game we play but this time she said it - Waaay ooop oolia.  WOW!

Both girls just love to play and some of the favorite games around here are to build forts or to hide under the covers and have me or Chris look for them.  Then there was the day that Julia, Emma and I decided to play in their room for much of the morning and then lay out a picnic lunch right on their floor.  We shut the door to keep Finnegan out of the room because it's just not that big of a room to have a picnic spread on the floor that our food loving dog could stay away from.  After that lunch we listened to the Imagination Movers on the iPad and had a little dance party and talked about things we liked, disliked, and wanted to do with the rest of the summer.  That was one of my favorite days this year with the girls and I know they felt it was a bit magical, too.  Julia still talks about that day.  

With Emma going to start pre-school in the next month and Julia in her last year of pre-school before she heads off to (GASP!) 5 day a week kindergarten next year I find that I want to hold onto these moments even more.  I'm going to try and journal a bit more here to capture some of the more mundane parts of our life that I know I'll love looking back on when the girls have grown.  My Mom did such a great job of creating special photo albums and keeping mementos for me that I still treasure and I want to be able to do the same for Julia and Emma.

The truth is that making time to capture this information in a central location is not my strong point and I'm so glad to know that my Mom has my back.  She keeps a journal for each of her grandchildren - all milestones, height/weight stats, vaccination dates, photos, funny things they do, etc.  I can't think of a nicer gift that she can give them or us.  

I go to bed tonight thinking of the photos we had taken for Emma's 3rd Birthday portrait.  I can barely see any trace of baby in them - she's growing into a beautiful little girl.   And I know I'll sleep soundly not because there was too little sleep last night (although, come to think of it there was too little!) but because I know we're enjoying life each day and making moments worth remembering.  

Thursday, September 9, 2010

A new Tag

Tara over at TMI made a personalized tag for her gorgeous daughter Chloe and I just loved the idea immediately.  I had planned to make one for Emma but one thing led to another and creating Emma's tag fell to the bottom of the perpetual to do list.  Until today!

On Tara's recent post about Chloe's 1st day of school she included a photo of Chloe's backpack with her tag attached and it reminded me how much I wanted a tag for Emma.  So, today I made one for her and then laminated it and will attach it to her wheelchair tomorrow.

I just love it!  Thanks to Tara for the great idea!   


Tuesday, September 7, 2010

Down Time

This weekend we took some time to relax and recharge.  This is not something that we take for granted since we usually have very little "down" time.  And, when we do get a long weekend or unexpected break from running here or there we are often working on any number of things to stimulate Emma's speech or motor skills.  Really....poor Emma can't catch a break from us!  

But, this long weekend we decided to relax a bit and have fun as a family.  We didn't worry about how much time Emma spent in a stander, listening, stretching, etc.  Instead we relaxed, recharged and played!  And our entire family is better for it.  The thing is, when we take this approach Emma usually shines!  She holds herself up really well in her wheelchair, she vocalizes to get our attention, she KNOWS that she is not being asked to work and she is thrilled to fall into the lazy days when they happen.  

So, this weekend we did a bit of shopping, ate some Mexican food, played miniature golf, went to the Wilmington Blue Rocks game and stayed for the fireworks show, ate ice cream from the local creamery and enjoyed a family bar-b-que.  We also slept in and skipped some naps.  Popped some popcorn and watched Camp Rock 2:  The Final Jam.  We talked about all the fun things we are looking forward to in the Fall - like picking apples, the leaves changing colors, doing crafts with the leaves and pine cones.  

September is a busy month for us.  Chris and I will present a final project and graduate from the Partners in Policymaking program.  Julia will start back at school and dance lessons.  Chris will run his first half-marathon and we will all participate in a 5K.  I will spend a lot of time following up on all the paperwork to get Emma's KidWalk gait trainer.  We have Emma's IEP coming up next week and she will likely start pre-school by the end of the month.  I have a lot of anxiety over sending Emma to pre-school, but know that we will only do that once we have all her supports in place and can ensure it will be a good experience for Emma.  

I think we all needed the holiday weekend to recharge for the busy month ahead.