Welcome 2016

It's been a while since I've posted here. We've been busy. And not so busy. I work hard to try and find the balance between busy time and down time. Time to spend as a family and time for each of us to engage in our own activities.

Julia continues to enjoy her Irish dancing and playing her violin. She moved up a level in dancing and is now competing at the Novice level. This means her awards are more trophies and less medals. She is happy about adding to her trophy stash that includes the Softball Championship trophy her team won in 2015. As for her violin, she sounds really good! I'm blown away with how good she is considering she has only played for about a year. She would like to add some private violin lessons to her schedule, and we are considering it, but in the meantime we plan on attending more of the children's Irish fiddle lessons that are given the 2nd Sunday of the month. She really had a lot of fun at the one we attended in December and hopes to make many of them in 2016. Her interest in running continues and she has participated in several 5K runs - mostly with her only training being playing tag on the playground. Oh to be young! This year she wants to put more of a focus on her running and she is just waiting for nicer weather to train with Chris. It seems Julia and I are kindred spirits in our fair weathered running bend.

Emma continues to ride her horse every week and loves her time at the farm. She rides after school at a time when she is normally exhausted (school gives her a huge workout and she likes to lay stretched out and relaxed for a bit after her full day) and has been holding herself up nice and straight showing us that her stamina is really improving. She played Challenger league baseball again in 2015 and is already signed up for this year. We've taken a break from therapies outside of school and we all are enjoying the break. This year she is participating in CCD class and makes her First Reconciliation this month and will make her First Holy Communion in April. This is a big year for our girl and it's so good our church was able to work out a class option this year that is wheelchair accessible so Emma can participate in class with some peers. Last year we homeschooled for CCD and it wasn't as much fun for her.

Chris completed another marathon in the Fall and was pleased with his time. He has been training hard and was able to shave off a significant amount of time from his past marathon results. He also participated in a lot of 5Ks around our community and he did many of them pushing Emma in her jogging stroller. Emma LOVES to run and has huge smiles for the fans cheering them on. She loves to run fast so is happy that Chris has mostly taken over running with her since I run much slower. He also coached the school Cross Country team in the Fall. He enjoyed coaching the kids to reach new personal best times during the season and is hoping to be able to coach again this year.

I'm still working on my photography skills and am happy to say that I now see a definite different in the quality of photos I'm taking lately. I joined the local camera club and have been attending meetings and going on some of the meet-ups for shooting and it's been a lot of fun. Our computer lived a long life but retired itself in the summer. I was without a computer for a little bit and am now happily running on a new iMac that is able to run some more powerful programs for photography processing. I've taken the plunge into Lightroom for organizing and editing my photos and it's a steep but fun learning curve. I continue to run at a slow pace - faster than those that are sitting on the couch, though! - and visit the gym for the classes a few times a week to make sure that I'm fit to keep up with Emma's growth!

2015 was the year we became smitten with Zoe (Julia's cat), fell in love with all things Harry Potter, achieved many goals we set for ourselves, and focused on having fun together outdoors.

2016 is sure to bring some major changes to our life! There are quite a few things in the works that have us excited already. I'm hoping to share more of our adventures this year than I did in 2015. I needed some time away but find that I miss capturing the highlights of our year and am looking forward to getting back into blogging again.

Let the adventures begin!

Fall Overview

Today is the first day of Fall.  It's my very favorite season.  I just love the chill in the air, the cozy feeling of a sweater in the morning, the availability of pumpkin spiced coffee, the changing leaves.  I don't enjoy the shorter days or the hectic schedule that comes with the back to school scene. 

This year both girls are in full-time school.  Julia started third grade and she is getting so very mature.  She is turning into a bookworm and devouring books at an astonishing rate.  It makes my heart sing to catch her cuddled up on the couch with a book in her hand or have her beg to stay up a few more minutes so she can read just a little bit more.  She still has a silly side and is allowing that to come out in public more often.  It's nice that she is letting the world see a bit more of her captivating personality instead of saving it for home.  This year she continues her Irish dancing and is adding in violin lessons at school.  Seeing her leave two mornings a week with her backpack and her violin makes me smile - it's a seriously cute site!

Emma is in first grade at our local elementary school.  She has a great team helping her succeed in a mainstream setting.  Some days are going great, some days she isn't interested in participating.  That is our Emma.  With the exception of her speech therapist her entire team is new.  Emma takes a LONG time to adjust to new people.  I'm praying that she starts to settle in soon and show them what she knows.

I continue to focus on getting myself in the best shape of my life and that means I've been running and taking classes at my gym more often than not.  With the girls back in school it leaves me some free time each day to get in a workout.  I'm even strongly considering doing a triathalon with Emma in May.  That gives me more than enough time to prepare.  Emma loves joining me in my workout sessions.  She is a great little motivator when it would be easier to cut a workout short.  I also have a neighbor who joins me for the evening and weekend workouts.  I love having a partner to workout with as it pushes us both to go a bit further or faster or workout on a day we would rather skip.  

We purchased a new bike trailer for Emma and she loves it!  I'll do a review on it soon, but for those who are wondering it is the Chariot Cougar I and a link for it is here:  http://www.rei.com/product/867690/thule-chariot-cougar-1-stroller-with-strolling-kit. The verdict is still out on how long it will be before she outgrows it, but it is working for now.  I'm planning on doing a 20 mile bike ride to fund raise for Cystic Fibrosis in a few weeks and was hoping to trail her behind me but the lawyers associated with the even aren't keen on that idea.  Luckily, the triathalon I'm training for is all ability friendly.  For more information on it, check the details out here:  http://gotthenerve.org/race-information/

With the girls back in school and *mostly* settled in, I've decided to look for a part-time job with flexible hours so I can still be available to drive Emma to appointments and therapy sessions and consult at school as necessary.  I found a few positions that really interested me but I might not have interested them enough.  I am confident that when the time is right a job will come along.  We are also still navigating the real estate market.  We put our house up for sale a few months ago when our tenants moved out but so far we haven't had any offers.  We will likely put it up for rent again if we don't get any offers soon. 

And I'll leave you with a photo I snapped last week after Emma's horse lesson.  This was at the end of the half hour session.  She did the best riding I have ever seen last week and after a full day of first grade at that!  My girl never ceases to amaze me.

Warp Speed

Where to start???  Maybe I should update the header to reflect the scorching temperatures we are seeing now rather than the blizzards we had in the winter?  Not tonight...

This spring flew by at warp speed.  Here are some highlights:

Julia made her First Holy Communion and we had a gathering of friends and family at our house afterwards to celebrate the big day.

Julia's softball season and Emma's baseball season ended on high notes.  Both girls loved playing with their team and enjoyed all the action associated with it.  They also enjoyed the snack bar at the field, as did nearly all the other children that attended games from what I could see!

Julia completed 2nd grade and is now officially a 3rd grader.  That time sure is going by fast!  So fast, in fact, that I didn't get an individual last day of school photo - gasp :-)  I did manage to capture a last day of school with one of her best buddies while they were all smiles.  Her buddy is moving to a different school next year and the day turned to tears since they will miss each other.  We assured the girls that we will continue to plan play dates and have had a couple including a sleepover already.  

Julia started making her "special desserts" after dinners.  One night she made strawberry shortcakes and it quickly turned into some fun with our food.  I love silly second - oops, third! - graders!

Emma graduated from Kindergarten.  She will start 1st grade at our {more} local school in a mainstream classroom and will have her language arts and math classes with the children in the learning specialist classrooms.  It covers the same curriculum as the classroom but goes at a slower pace which will allow more time for Emma to hear and process the information through her CIs and then respond at her slower pace due to her slower motor control.  We are praying that her 1:1 aide will be hired by the district to work with Emma again, but that is very much a prayer at this point in time.  Emma did a tour of the school and met the learning specialist teacher and told us that she is "excited" about her new school.  Emma is doing well with telling us her feelings on her talker - and that has me excited!

We found out that the tenants that were renting our old house bought a new one.  We decided to list the house for sale again in the hope that are hoping for a quick and uneventful road to a sale and settlement.  So far, it's not as quick as we hoped but we are still optimistic.

I ran a 5K!  Chris loves running and has been asking me for a couple of years to start running so he could cheer me on at the finish line.  This year I have been focusing on my physical health and decided to go ahead and put aside my hate of running and surprise him by running a 5K race as a Father's Day present.  I used the Ease into 5K program that is an app for my iPhone and only told him about it a week before the race.  He didn't believe me at first and was really excited when he realized it wasn't a joke.  After running for about a month I joined up with my neighbor and we try and run together since we run at a similar pace.  We entered and ran the race together and probably had the biggest cheering section as our families came out to cheer us on!  The girls joined in the fun by participating in the children's race that went off before the 5K.  It's was a lot of fun and I'll probably enter another race in the Fall when the weather is a bit cooler.

We had the opportunity to go to a Phillies game with our support group from the hospital.  We were able to spend some time on the field and meet a few players and talk with our host, Ryne Sandberg and his wife Margaret.  They were so nice and easy to talk to and it was an amazing opportunity and fun night out!  The Phillies won in extra innings - 5 extra innings to be exact.  Needless to say we didn't stay for the entire game but were happy to hear we won when we checked in the morning.

We have also been busy checking out a couple new exhibits at the local science museum, attending summer parties, a fundraising event for a local charity, a family wedding and a couple wedding showers, along with spending long nights outside listening to the neighborhood children play and giggle and ask if they can stay out just a little bit longer.

Yes, our life is full.  No wonder I haven't sat down and updated this blog!  We are hoping you are having a similarly fun summer!

Hodgepodge and SNOW!

Emma is making real progress in her Powerchair and I hope to get a video up soon.  The problem is she won't move when she sees me start to take a video, so that's making it hard for me to post something.  Hopefully the weather will be nice out this weekend and she can practice driving a bit and I can try and be a bit stealth in taking the video.

I'm still behind on thank-yous.  It's looking like Christmas cards could be a no-go this year.  That would be a first for me.  There is still time, so I might get them out.  We'll see if I get injected with a bit of umph!

We've had a bit of snow around here.  The girls loved it yesterday and even ventured out in it - for about 15 minutes.  It takes forever to put on all the snow gear but each year they tend to stay out a bit longer than the previous year.  When I got all the gear together we found out Julia outgrew her snow boots and so did Emma.  They are both about 2 or 3 sizes too small....it's been a while since we've had a good bit of snow around here!  Good news is Emma fit into Julia's old boots and I was able to pick Julia up a new pair today.  So we are now all ready for the snow that is supposed to arrive tomorrow....but since we're ready I'm betting a warm front comes on in and brings bathing suit weather :-)

Here are a few photos I snapped in the snow yesterday.  It was a great day for us to play in the snow, drink homemade hot chocolate with whipped cream, listen to Christmas tunes and decorate our Christmas tree.  It was one of those days that just felt right and festive.

Quiet

At this moment my house is relatively quiet.  I'm listening to one of my favorite CDs while the dishwasher runs in the background.  The doors and windows are open but not much of a breeze is coming through since we are in the middle of a heat wave.  The window unit air conditioner is off and the girls are off having lots of fun at camp.  I have 3.5 hours all alone today.  It's quiet.  This is my first bit of alone time since Julia's school let out 5 1/2 weeks ago and we were busy doing so many fun things during those weeks.  Oh, the fun of summer!!!!!!

So, I have a bit of time on my hands to spend as I please.  I've used a bit of that time to send out thank you notes, a letter to a young man we don't know but who has CP and is in the hospital for a lengthy stay and wants some cards to hang up, send a couple belated Birthday cards, made a few phone calls, cooked taco meat.  It's amazing how quickly I completed it all.  I still have a long list of things I would like to do.  Clean the bathrooms, run to the grocery store for the tortillas for tonight's taco dinner, pay bills, tend the garden, write, etc.  The to do list is never ending and I find comfort in that.  No matter how much or little I accomplish there will still be more on the list so I don't need to rush to complete most of them.  I guess getting tortilla has to be done before dinner but other than that it can all wait.......because I've decided to set aside the list and head to the gym.

The gym.  It's good for my body and good for my soul.  I never used to enjoy going to the gym at all.  Lately, though, I'm finding that I look forward to my workouts.  I have aches and pains where there weren't any a few years ago.  Carrying around an almost 5 year old is very different than carrying around an infant and I need to keep up a workout routine to avoid injury and keep my muscles in shape.  My body always feels better after a workout - less aches and pains and my mind is clear.  It's been too long since I've worked out during the day since only one of the girls looks forward to going in the gym's child minding play center.  I can't enjoy working out knowing one of my children is crying and unhappy in another section of the building.  So we opt for exercising together instead and go on bike rides, walks, swimming and have lots of fun.

But since I have a bit of time to myself now I'm heading to the gym.  The to-do list can wait.  Remember that if you come over and notice the house looks very lived in :-)

Softball season winds down

My favorite softball player strikes a pose

Julia's first Softball is coming to a close.  Her team had a bit of a rough start but rallied half-way through the season.  Their standings at the end of the regular season was 6th out of 12 teams, so they finished in the top half.  Playoffs start this weekend and we are all hoping the girls win and continue on  through the playoff series but our first priority is that they have fun.

Keeping her eye on the ball.  Her pink sneakers always bring a smile to my face!

It has been a fun season!  This is Julia's first year playing ball and she loves being part of the team.  The girls are from all different schools and range in age from 7 to 9 so many of them didn't already know each other.  Most live close to us and it's fun when we run into her new friends outside of softball practice and games.

The girls huddle under the beach umbrella for a bit of shade.  Julia's number is 2.

Julia started out quite timid and afraid of the ball.  She didn't want to hit the ball - when she did she said it hurt her arms/hand/wrist.  At this age they use a pitching machine so it does come at them rather fast.  She eventually got used to the feel of the ball hitting the bat and it no longer hurts her arms.  She has had quite a few RBIs (runs batted in) and even scored a few points.  At this age they mostly run one base per hit but can run two bases if they hit the ball well into the grass.  That rarely happens and so it's mostly hit the ball and run to 1st base.  Many of her teammates have been playing t-ball and/or softball for a few years and Julia was able to solidly hold her own even in her first ever softball season.

It's great when an at bat results in a run to 1st base!

Each game is 6 innings long.  Sometimes that can go by quickly, but when it is a 5:45pm game on a school night it can seem like an eternity to those of us on the sidelines.  We were scheduled to played each team in the league twice but some games were cancelled due to thunderstorms.  Each team had a different jersey - Julia's is red and her team is the Dragonfly's.  The team they were playing when I snapped this photo just happened to have red shirts, too.  It was funny to see so many red shirts out on the field!

Julia played field positions in most of the games and is interested in playing catcher in an inning.

There is a snack shack that is a top destination for the kids after (during??!!) games and practices.  It's funny to see all the children negotiating with the parents for more money for some snack they just have to have.  Parents are assigned one turn each season to work the snack shack and I was surprised at just how busy it is - even the 9:30am Sunday morning shift that we were assigned!  It would appear that more than a few kids hit their piggy banks before game day and the siblings of the players were often over to make a purchase or two or three while waiting for big bro/big sister to finish their game.

Water ice is a perfect treat after a long game in full sun.

Chris pitched in to help out the coach as needed.  A few parents commented to me about how he should be a coach next year since he is so upbeat and positive with the girls.  I agree - he has a wonderful way with children.  Emma made it to all the games and everyone knew her and greeted her by name.  No surprise there!  My little charmer is always remembered for her huge smiles.

We are so proud of all your dedication and hard work this season, Julia!  We hope you have a winning playoff season and look forward to seeing you play again next year!

Earth Day

Happy Earth Day!  I have my B.S. in Environmental Science and it is very important to me that we try and tread lightly on our planet.  Our family likely has a large carbon footprint but we are working to bring it down. We recycle almost everything we can, buy items with minimal packaging, reuse bags and are trying to adopt new habits that are more environmentally friendly such as: buying from farmer's markets, walking/biking more instead of driving to local places, and hanging our clothes to dry in nice weather.

I was happy to hear that Julia is learning about Earth Day in school and she was very surprised to find out that she did not have off from school for this holiday.  That gave me a bit of a chuckle.  I know her school marked the day with Earth Day friendly activities and think Emma's class unit on spring will cover Earth Day topics like growing gardens.  I'm thinking it would be a good time to ask Emma about her school activities and see what activities Julia and Emma had in common.  Fun idea, right?  Let's see how much Emma wants to tell us...she is the nosy, silent type.

I'm not the best green thumb but can usually manage to grow some vegetables in the summer.  I already have some lettuce and hope to plant a bit of cucumber, tomato and peppers.  Maybe a few other veggies, too, depending on when I get around to the planting.  I've asked Chris to make us a raised vegetable garden container that is height adjusted so we can roll Emma's wheelchair under it and she can help with the garden.  I think getting her hands dirty and helping to pull off the fruit will appeal to her.  It also addresses my desire to use clean soil for the garden and having it as a raised bed will eliminate any ground contamination that might occur.

The past year I've been working hard to minimize the amount of packaged food we purchase, opting  instead to use most of the food budget for whole foods and organic food when possible.  This has resulted in slightly more cooking and food preparation time but overall more satisfaction with our meals and snacks.  I believe this change will make a difference in our family's health long term and think that eating mostly whole, fresh foods makes me feel less guilty when we do indulge in the packaged food variety.  Don't get me wrong - we still use packaged food, especially crackers and some snacks.  We just use less of it and are trying to cut out even more and our garden will help with that effort.  If you are trying to do the same, a good site for ideas on how to achieve this is 100 Days of Real Food.

We are members of our local zoo and they have an ongoing conservation effort to educate the public on the environmental impact of some food ingredients.  Long story short, we learned that Emma's beloved Nutella uses palm oil and the way it is harvested is endangering the orangutan habitat and the species.  For more information on this you can visit:  www.rspo.org.   Since we love the orangutan we ceased all purchased of Nutella after that and started looking at the list of ingredients we buy to determine what includes palm oil.  Turns out a lot of items contain it!  Yikes!  So, we are trying to patronize companies that use sustainable palm oil.  Today I purchased Justin's Chocolate Hazelnut Butter and it is a nice alternative to Nutella.  It's more expensive but we don't use much and since it is a food that motivates Emma to eat on days when eating just seems like too much effort for her it was a good purchase for our family.

These are a few things we are doing everyday to try and minimize our impact on Earth.  If you have some actions you are taking please consider putting them in the comments section as we are open to more ideas.

Progress, softball and other updates

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

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

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

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

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

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

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

Bits and pieces

It's almost Spring.  With the clocks turned ahead one hour it feels nice to have a bit of evening family time together when it's not dark even if it means the girls are going to bed a bit later than the ideal time.  Spring break is just around the corner and we are already coming up with a list of fun things to do together since the girls' breaks overlap a week.  Last year there was only a day overlap which meant I had one of them home with me every day for 4 weeks, and this year it will be for 3 weeks.

The weather this weekend is a bit unseasonal.  Yesterday we had sleet and snow making it a great day to duck into a coffee shop during a stroll in the city.  It was the perfect little coffee shop and I instantly fell in love and thought the girls would so like a trip to it.  Then I remembered the 8 steps up a steep flight of stairs to enter the cozy (i.e., tiny) space and decided it's not a great spot after all.  Sigh....there are so many great places in the city that are just not set up for wheelchairs.

Next week is Palm Sunday already.  It is strange having Easter so early in the year.  It feels like lent just started and already we are making our Easter plans.  Chris asked me today if I was going to plan another Easter egg hunt.  The kids are at the perfect age for them and we had a hunt with friends the last couple of years that were so much fun.  I think I better start looking for all our plastic eggs and filling them up.

I've been working on my photography lately and am branching out to taking more photos outside of my children ;-)  It's been a lot of fun and I'm happy I have a creative outlet to balance out my mostly scheduled days.

Finnegan

Firecracker FINNEGAN Sheedy

July 4, 2002 - February 21, 2013

We called you 

Finnegan

Finney

Finn

Finster

Finney Ginney

Finnegar

Finners

Finnegan-egan-egan

But mostly we called you family.

Thanks for the best 10.5 years.  We wish it could have been more.

You brought more joy into our world than I ever thought possible.

We will never forget you.

"Until one has loved an animal, a part of one's soul remains unawakened. "

(Anatole France) 

My heart is broken today.  

Catching Up

We've been really busy the past couple of months.  At the end of the holidays Chris came down with the flu and was sick in bed for days, Julia kept spiking a fever after we kept thinking she was getting better, Emma had a cold and I was busy trying to stay well and keep the house running.  Let's just say that for that week I really missed our old fenced in yard for Finnegan and now understand why single Moms might not want to add a pet to an already incredibly exhausting workload!

Julia celebrated her birthday in early January (I'm putting the finishing touches on her annual birthday video this week) and was mostly sick on her big day.  Poor girl!  Chris managed to reappear from the bedroom long enough to say Happy Birthday to her and see her open her gifts.  She felt a bit better by late morning so me and the girls went to Build-a-Bear where she "made" her new buddy Scarlett but that was about all she was up for at the mall - she turned down my offer to buy her a present in the Disney store and eat ice cream at Friendly's so I knew she wasn't feeling well at all!  

January was a busy month.  Julia competed in an Irish Dance competition and had a lot of fun and won a couple of medals.  We celebrated her birthday at school with her classroom Birthday Circle - a unique tradition her school has where everyone sits in a circle and focuses on the birthday person and everyone in the circle takes a turn sharing what they think is really special about the birthday person!  Julia picked a day to celebrate her Birthday Circle that both Emma and I could attend because "Emma didn't come last year and I want her there."  Chris was able to join us in the classroom so Julia had her whole family there to share her special Birthday Circle!  This year we video taped it and think she'll really enjoy having that video when she gets older.  Afterwards we joined her and her friends for lunch and then she shared homemade cupcakes with her classmates.  It was a very special day for her and for us.

I went away for a ladies weekend retreat with a few good friends and it was wonderful to reconnect with myself a bit.  I love my role as Mommy and Wife, but it sure was nice to have time to focus on just me for a couple of days.  The fact that I was at a hotel on the beach with wonderful friends and an agenda that included some very inspiring speakers made me feel my time away was very well spent.  Thanks so much to Chris for encouraging me to take that time for myself!

Chris caught a couple of basketball games but I'm not sure he saw as many football games on tv as he would like - we'll have to figure out a better routine for him to watch more of his sports teams for the Fall lineup.  And, I'd love for him to go on a guys weekend but it seems like they guys aren't as good at planning a weekend away as the girls!

Emma had surgery on her adductors and hamstrings.  I'm happy to say Emma recovered her spirits within a couple of days of her surgery.  The day of surgery and the day after were rough on all of us but Emma bounced back quicker than we expected.  She was off most of her pain meds and vallium within a few days rather than weeks and has been slowly regaining her stamina.  She slept a lot the first week but was able to head back to school the second week!  She has a busy schedule of PT 3x's/week for about 6 weeks post-surgery in addition to school and she is handling it in true Emma fashion - with a smile.

Life is busy but oh so good!

Thankful ramblings

Some days can be long and stressful and I feel like I'm swimming against the tide.  I've had a couple of those days recently but I'm thankful today was not one of those days!  

I'm thankful for:

• Last night Chris went out with a friend and we had a girls night at the house.  Easy dinner followed by girl time in the kitchen when Julia decided to color at the table while I cleaned up the mess.  Emma had her talker sitting on the table and she said she wanted to color.  It was great to hear because I was at the sink when she said color several times.  I taped a page of paper to the table, gave her a crayon and she scribbled a bit before dropping the crayon.  To this minute I still have NO idea where that crayon is....funny how Emma has a way of hiding things on me.  Then she asked to read a book so Julia read one to us.  It was a fun and easy night.  And Emma initiated all the talking on Evie on her own without any prompting!  That is a big accomplishment.  She then went on to cry for about 2 hours at bedtime which brought me back to Earth.....she keeps us on our toes like that!
• Julia is coming along really well with her reading.  She is reading longer books and learning more and more words.  I'm so proud of all the effort she is putting into learning to read at school and then coming home and looking to read 2 or more books again at bedtime.  I love listening to her read in her little girl voice.  I wish I could bottle that little voice because it sure is music to my soul.  And the cuddling that occurs with the book reading makes my heart hum!
• Julia continues to excel at imaginative play.  I was cleaning the play room today and looking for things she doesn't need anymore but I quickly realized she plays with pretty much everything we have.  She is so creative on pulling things from various places - like animals from the farm, her Barbies, and her play food to create a picnic lunch for the barbies in the woods - and using them together.  I love listening to her play with her friends and learning how they are really put a lot of thought and effort into their play time.  
• Emma's been blinking a lot on one of her CI programs lately so we needed to go in for a "tune up."  Since she doesn't talk yet her school hearing team worked with us on Friday to show her how hitting a button on her iPad that I programmed to say "I hear you" would let us know she hears the sound presented in the sound booth.  She is a quick study and figured it out very quickly.  She also giggled the entire 45 minutes.  You would have thought we were on a roller coaster or the tilt a whirl with all the giggles she had!  I'm glad she didn't consider it work and she was able to give us a pretty good read for an audiogram.  Today she had her real mapping session at the hospital and we brought in her iPad.  She did really well again and used the iPad for a good portion of the testing until she decided she was done and laid her head down on it.  Game over ;-)  We got a really good map for both her right and left sides, which is wonderful since she usually needs two different appointments - one for her right hear then another appointment another week for her left ear - due to her fatigue in the booth.  Her audiogram was similar to the one we got on Friday so I feel very confident that it's a good one.  We kept her same map because she is hearing really well but changed the sensitivity of the programs to see what will work best for her without causing the eye blink.  The program we left on (P3) worked well for the rest of today so we'll continue to monitor her reaction.  I'm constantly in awe of how far Emma is coming in her hearing and cooperation in the sound booth.  I remember the early days when I wanted to cry after each mapping session and now they are going really well.  So proud of my girl!

• We ran into a few of Emma's fans while at the hospital.  It was great catching up with them!  If you have to take a child to the hospital the one she goes to is so personal that it takes a bit of the sting out of it.  How lucky we are to have people go out of their way to come over and get caught up on Emma and give her hugs and ask her questions directly.  Today she used her iPad with the My First AAC app while at the hospital (there is no way I was brining her iPad and Evie!!!!) and said Hello and Goodbye and Nice to Meet You to so many people.  It's the first time she has used that so frequently and intentionally.  I liked it.  Maybe all our work with her is paying off.
• Tonight Emma said Mommy (twice!) on Evie for the first time ever!  She says Daddy, Julia and Finnegan all the time.  Never Mommy.  Tonight at dinner she decided she wanted Mommy to feed her.  And she got just what she wanted since she asked!!!!!!  She said a lot tonight and I took a photo of the screen to capture it because it made me so thankful that she is starting to communicate with us.  There is along road ahead of her/us, but at least we are on that road and making our way down it.  Slow and steady wins the race - I just have to keep reminding myself of that.

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!

Proof the girls are growing up

Julia has been working so hard on reading.  She has some Level 1 "ready to read" books that she can now read!  She is so excited about this accomplishment and I am, too!  She is working so, so hard - sounding out the words and remembering her sight words that cannot be sounded out.  I don't really remember learning to read and didn't realize how much work it is to learn to read.  Julia is putting in the time and effort willingly and the fruits of her labors are paying off.  I'm so proud of her!  

Emma continues to get good reports from school.  Last week she had her PT note sent home saying that she had her BEST PT session at school ever!  She was working in the gait trainer and took a total of 8 steps without too much prompting from the PT which hasn't happened at school before.  Horray Emma!  The same day she had a message sent home that she had a "time out" at school.  I asked Emma about it and she laughed.  Stinker!  

 

Her time out was for 1 minute and it was after three warnings to attend and give her input at her turn during circle time.  Emma has a wonderful way about looking through adults to focus only on observing other children.  She does this pretty much everywhere, not only at school.  Her time out was that she was taken out of circle time for 1 minute and she couldn't see the other children for that 1 minute.  I've given my permission for the staff at school to do this after they have given Emma several warnings and on the condition that they tell me each time they use a time out.  They don't want to use time outs with Emma but have tried lots and lots of things to try and get Emma to become more of a participant and less of an observer during school activities.  She was given a 1 minute time out and once she was brought back to the circle she participated in all the activities happily.  She picked colors, numbers, responded yes/no to questions smiling the whole time.  I'm so happy she participated!  I hope she doesn't need more time outs to continue her participation ;-) but my experience has shown that Emma learns quickly and I've only ever had to do a couple of time outs at home and she changes her behavior.  She has that in common with Julia.

Julia loves to give Emma kisses and Emma loves to get them!

It is so much harder giving Emma consequences to her actions than it was/is with Julia.  But I know that we are not doing her any favors by letting her continue to skate by on certain things when she is capable and able to participate.  

Emma decided to give Julia a kiss.  An unexpected and beautiful moment!

Goal update

This year I've been holding myself to the one little word "Action."  I have to say that taking deliberate action on the my focus areas - family, photos, fitness and finances - is lowering my daily stress level.

A few things that we accomplished so far this year are:

• Family:  Implemented family game nights, movie nights, and craft nights.  Our girls are really thriving with the extra attention and activities.  We also hold informal family meetings that the girls like and Chris doesn't like.  He thinks they are silly.  I like them because everyone has to give me at least one suggestion for a dinner dish to make that week and so it means that at least 2 days/week there are no complaints at dinner.  Julia likes it because she loves to go over the family rules - with her in charge of dishing the rules out and she has a baton she uses as her microphone.  Emma loves to watch Julia talk and wield the baton and so she loves the meetings.  
• Photos:  I've enrolled in a photo class and it's quite intense.  But, I'm seeing such improvements in the photos I am taking and love that I took this class.  
• Fitness:  Most weeks I'm hitting the gym 3-5x.  Chris loves working out, but I never really liked it too much so going this frequently is new for me.  It's now become a routine and most days I actually look forward to going - something I never thought I would say!  I mix it up with classes and individual workouts and then hit the hot tub when I have a few extra minutes at the end of my workout.  I've found that the people in the classes I take are really friendly and usually there the same day/time I work out and so it's been a bit of a social outlet for me, too.
• Finances:  We've made a lot of progress on this, too.  I've been tracking our expenses and made a loose budget for this month and next to see how it goes.  I don't like budgets but since we haven't won the lottery I guess it's a necessity.  

In addition to all this, Emma has made fantastic progress in potty training and started extra physical therapy outside of school 2x/week.  Julia now knows 4 steps in Irish dancing and she can now swim without needing a float all the time.

I like taking a moment to realize all that we are doing because it can get lost in our overly-hectic life.  Is it really on February??!!! My how we started the year with a BANG!

I took this photo outside our door.  It's of the beautiful flowers Chris sent me for Valentine's day.  I'm a lucky woman!

And we're off to a good start!

Our life has been filled with hustle and bustle since the New Year began and I just want to take a moment to update on a few things going on so far this year.

• Julia's swim birthday party was "THE BEST BIRTHDAY EVER" according to her.  That's just what this Mommy needed to hear ;-)  Note to self - always bring double the amount of drinks and order double the amount of pizza you think you will need so you don't run out!  Whew - those little children were HUNGRY!
• Emma's secondary insurance approved for her "toileting" system after it was denied by her primary insurance.  That is just a fancy word for an adapted potty.  The one we are ordering is the Rifton Blue Wave in size small and is the same one she uses at school.  Or, I should say sits on at school but must have performance anxiety there.  Hoping to get the toilet training under control and well on our way to pull ups this year.  She is already doing great at home, just not so good outside of our house so that is where we have to make the most progress.  I'm very hopeful that the Rifton seat will help us get her going in the actual bathroom and avoid using the potty chamber all together because Emma is a big girl and eats like a big girl and using an actual toilet would be something great for my big girl (and her Mom).  Estimated time of arrival is 2 weeks, which gives me a bit of time to figure out where we can find room in the house for yet another piece of equipment.
• In a move that almost made me faint, Emma's primary insurance approved her new wheelchair!  I think it is the first approval letter we have ever seen from them and Chris suggested we frame it - and I don't think he was joking, either.  That's how excited we were to get it!  Still likely to take a couple/few more months before we receive delivery of the chair because it - like many things Emma - is a custom chair with a custom seating system with a custom headrest with a customer seatbelt, etc. and so that takes a while to get it all together and ready for Emma.  Still, I'm super excited that (while it took 3 months to get the approval) it is one less fight ahead with me on insurance.  God is good!

Let's hope the rest of this year continues as good as it started!

Catching Up

Nothing fancy tonight, just a bit of what has been happening here in bullet list since I'm in kind of a relaxed, lazy mood tonight ;-)

• Julia and I were driving to a birthday party she had yesterday and we were talking about how her favorite subjects at school are the monkey bars and P.E. (gym).  I decided to ignore the fact that monkey bars are not a subject and I asked her what they did in PE this week.  She said they played soccer both days so I asked her if she liked soccer and she said it's not her favorite.  I asked her what her favorite sport is and she thought about it for a while and then said very definitively "Bocce Ball!"  I couldn't help but let out a few good for your soul laughs.  She joined me in laughing and kept telling me that Bocce ball is definitely her favorite.  I didn't know she like bocce ball so much, we have a set we used a lot at the old house and we'll have to find a spot around here that has enough of a lawn to play it.  Yes, she isn't going to be a great athlete.  Dancing is more her gig.
• After I wrote the post on Emma's Tobii eye gaze trial mentioning that we might want to test the Eco2 next, I received a note the very next day from her SLP saying they wanted to talk to me about the Eco2 and that they think we should trial that system, too, and see which works best for Emma.  I SOOOO love how in sync I am with Emma's speech therapist at this school!
• The weather here has been unseasonably warm.  We went and purchased our tree today and it was in the 60s.  We were even debating if we needed a jacket or not!  Last year we had the girls in 2 layers, hats, gloves, and boots to get our tree.  The wind was whipping and we were so cold and a highlight of the day was the hot cocoa with lots of marshmallows afterwards.  Today we found a truly mom and pop tree farm, had our pick the 3 trees they had that were around 6' tall (seriously!  that is not an exaggeration! this farm seemed to really love the 3' tree...), and came home and had some water with ice in it.  Of the two, I prefer the warmer weather but I wouldn't mind something in between.
• Julia and I decorated Emma's wheelchair for Christmas.  It has tinsel and battery operated Christmas lights.  Emma was over the moon happy with the chair and couldn't stop laughing and squealing when she saw it.  It made my Momma heart feel good to see her reaction!  Julia then got a little sad.  We eventually got it out of her that she was sad because didn't have any lights.  I told her I would get her some and that made her happy.  The next day I bought her a strand of the battery operated lights. We decorated her doll's stroller and then we all went to the mall that night.  Both strollers sporting lights and Emma's with the additional garland.  We had so many people smile and comment on how they loved the lights!  It was so refreshing to walk around the mall and only get positive attention from people.  Not one person said God Bless You to me!  Believe it or not I usually get lots of well meaning??? people coming up randomly to me and Emma and saying that.  For the record, I HATE it when they do that!!!  So, I consider that a great trip to the mall.  Plus, I loved watching the girls enjoying the lights on the strollers.  

Lots of photos to share and I'll post some this week.  Now, off to work on my Christmas to do list!

Preschool - One month recap

The past month has gone by so quickly that it's hard for me to believe that Emma is wrapping up her first month in her preschool.  Emma attends school from 8:30am - 11:15am Monday through Friday and this is new for both of us.  We are not accustomed to being apart and I'm happy to say that we are both mostly adjusted to the change in our routine.  It requires an early rise time and neither of us are morning gals so I'm happy that Chris is around in the morning to make sure that we are up and about at the proper time.  Our routine is pretty streamlined at this point with:  time spent on the potty, drinking a breakfast smoothie, getting dressed and AFOs on, double checking to make sure her backpack is all set, and packing a snack and drink.  School is at the other end of our county so I drive Emma in and have the bus drop her home.

Emma settled into preschool the first week without any issues and that could be because I stayed with her most days.  She started to cry at drop-off during the second and part of the third week.  It was the screaming sobbing cry that makes me want to run back and take her home with me.  She knows when to pull out that cry and that it rips my heart to shreds.  And, no, she wasn't laughing and smiling a few minutes later.  I even had a couple of calls from her therapists letting me know how unhappy she was and hoping it wasn't them.  Sigh.  I - umm, I mean we - toughed out the 6 days of sobbing at drop off and they were replaced by smiles on day 7.  Oh Happy Day!!!!

Emma has a communication notebook that we send back and forth to school.  Each day the teacher adds a sheet of paper with the following sections:  play time, circle time, small groups, snack time, therapy, other, notes/comments.  In each section there is a set of PECS symbols and she circles the items they worked with in each section.  This is really nice because I can look at the symbols and go over Emma's day with her.  There is also a sheet that has the equipment along with an entry for the time spent in the equipment.  One day I requested information on what equipment she used and how long she was in it so I know how to plan the equipment we use the rest of the day.  The very next day this sheet was added to the communication notebook.  Fantastic!  I also asked about the potty and her snack and they added another sheet that updates me on them daily.  Additionally, on the days that Emma has therapy the therapist includes an update in the notebook so I know what they did in therapy that day.  I feel very well informed of what is happening at school and this makes it easier to part with my girl every day.

Emma has a lot of goals on her IEP.  They are not easy goals and I'm happy that the team set the bar pretty high.  I'm even happier to report that after only a month of school Emma is rising to the challenge.  My focus for Emma is communication.  Yes, we have goals for PT and OT, but I'm not as focused on them at this moment as I am on getting a reliable, usable mode of communication for Emma.  The team is spending a lot of time reinforcing communication in every interaction with Emma and this is working great.  Central to her communication is having her CIs fully operational so first thing each morning the hearing teacher checks her implants.  Emma is starting to say some sounds during the hearing check - this is a huge accomplishment because Emma usually reserves this for special occasions only.  There is no doubt in any of our minds that Emma is hearing well and using her hearing quite effectively and that her real challenge is expressive (not receptive) communication.

The speech language therapist (SLP) is working with Emma individually, in the classroom setting, and then with the team to instruct them on how to carry-over communication.  Historically, Emma is non-participatory in many of her speech sessions.  It's just very hard for her to communicate vocally or physically and there has to be a big payoff for her to participate.  This SLP gets it and is having success with Emma participating.  She wants to move towards a scanning communication system initially and then test out some eye gaze systems.

Many scanning systems only have a 2 second delay before they move to the next item.  We think this might not be long enough for Emma to hear it, process the information through her implants, and then get her motor plan together enough to hit the switch.  Two seconds really isn't that long when you take Emma's hearing and physical challenges into account.  So, her SLP tested out a head switch with Emma and she was able to use it quickly without much training.  Her idea is that Emma could use two switches for a scanning communication method - the head switch to go from item to item and a hand switch to select the item.  This would give Emma as much or little time as she needs to say what she wants.  I was skeptical at first because it is already hard to keep Emma's CIs on her head without adding a head switch but it seems to be working well and isn't knocking off her CIs.

This week the SLP entered the following information in her communication notebook:

• Tuesday (her pull out for speech day):  Emma had a good day today!  We started working with 2 switches (on the computer) and she did great :-)  Each switch has a different function - example:  one switch adds one more block to the tower and the second switch knocks down the tower.  
• Thursday (SLP pushes into the classroom day):  We used 2 switches again today in the classroom - much more distracted than when in my therapy room, but she still did well :-)  Lots of choice making with 2 pictures also.  

This Mommy is over the moon that Emma is not only participating in speech, but doing so in both a one-on-one and classroom setting!  The gains she has made in the last month are more than her entire first year of preschool at the old school.

I'm filled with hope for Emma and for us!  Our decision to move was good for so many reasons and I'm so happy that Emma is in a program that is not only meeting her needs but also providing academic challenges that Emma is meeting head on.  I'm looking forward to see what happens as the year unfolds.

Sunshine and Lemonade

We have seen a few beautiful sunny days around here lately and Julia has asked me to add lemonade to our drink mix so when we went to the store one weekend we added it to our cart.  She sure does love lemonade!  I do too!  I haven't tried it with Emma yet, but I have a feeling she will be happy to replace her hot chocolate treat with a bit of refreshing lemonade.  Hmmm....I might have to give her a little taste once the sun comes back and see what she thinks!

Julia is interested in starting a lemonade stand this summer.  I'm going to work with her to pick a location (and discussions with the owner!) for the stand and pick a date then spread the word to everyone we know to come out and support her stand!  It would be great to have a big turnout because she is going to donate a portion of the money she makes to charity to help stop the spread of CMV.  Or, as she says it, "So other children don't get a boo-boo in their brain like Emma."  We're waiting for consistently warm weather to really work on the details of the lemonade stand so it probably will take place in the summer.  I'm really excited that Julia is learning about "giving back" at such a young age and plan to support her efforts 100%.

I'm wondering if people would rather buy fresh-squeezed lemonade or would be OK with the mix.  Let me know if you have seen either one do better at the kid's stands.  I'm also thinking of having soft pretzels to sell with the lemonade and hand-outs on CMV to spread awareness.  If anyone locals has ideas for a location or is interested in helping Julia in the stand please let us know.

This and That

I love the Spring.  For me it means new beginnings, beautiful flowers, long afternoons spent outdoors, lots of bubbles, family walks, time at the park, time in my garden.

Family photo taken Easter Sunday

I have a funny story.  Chris and I were talking about how we will celebrate Mother's Day and he said he knows how much I like working in the garden and weeding and perhaps I'd like for him to tend to the girls while I take some time to weed the garden. Seriously!  I had a good laugh over this - him suggesting that me weeding the garden would be a highlight to my Mother's Day.  I do like to garden but weeding is not on the top of my fun list!  I love the garden once it is weeded, but doing the weeding not so much love.  Poor Chris felt so bad about suggesting after when he spent a moment to think about the suggestion.  Needless to say I won't be weeding the garden on Mother's Day :-)  

Julia and Emma with MeMom and PopPop

This year I've been a bit lazy on my garden.  We are *still* trying to sell our house and I would rather not put in the work for a vegetable garden when we will be moving soon.  We've worked out a back-up plan in case we don't sell our house because we really have to move.  Chris is completely exhausted after 7 years of a 3 hour (1.5 hours each way) commute to work and with Julia going to his school in the Fall for kindergarten we need a reasonable commute time.  We also want to be closer to family and in a school district for Emma that she will attend for a long time.  Because it's hard on her (and us) to transition out teachers, therapists, etc.  She will have a couple more years of preschool and we would like them to be in the same school district that she will attend kindergarten.  This move is turning out to be more stressful than we anticipated, so send good vibes our way for it all to have a happy ending soon!

Emma is crawling so much and starting to get *stuck* under things.  I love seeing her move!

Julia and Emma are changing so much.  Emma now has some freckles on her nose/cheek area.  They look super cute and I love noticing her cute little freckles.  Julia is getting older by the day and asking hard questions.  Questions that I don't always have the answers to and that actually make me think before I respond.  I like learning how she is processing her world by the questions she asks - it really drives home how mature she is getting.

This weekend was Family Day at the race track.  There was a moon bounce, face painting, pony rides, live horse racing, and a bunch of other fun things so we took the girls.  They loved it!  There are several more this summer and we hope to make it to another one.   Today the fun continued when Chris took the girls to the minor league baseball game to help celebrate Rocky Bluewinkle's birthday.  They had a ball while I got some time to myself to grocery shop and sew a new dress for Julia.  I love little family and we have so much fun together!  

Last week Emma tested out the eye gaze communication system.  It did not go well.  I guess I'm not surprised that it didn't go well, but I am a bit sad that it didn't go better.  I truly hoped that Emma would find her voice in the eye gaze system but she seems to prefer a more tactile communication system.  We did get some suggestions on what to try so we can move her closer to an eye gaze system and we will pursue them.  We are working hard on giving Emma a non-technical Yes/No.  She does say Yeah on occasion and we are having her make an attempt to say Yeah or shake her head yes before we give her something she is communicating she wants.  I'm happy to say she is doing better at this than previous attempts.  She said Yeah for her bottle twice one day this week, which is amazing progress.  She is also shaking her head no more often.  I wrote a story on her iPad and we were reading it on Saturday with her OT and Julia wanted to turn some pages and Emma kept shaking her head no when we asked if Julia could turn the page.  This is so uncharacteristic of Emma because she is usually much more agreeable.  It's nice to give her a low tech Yes/No that she seems to be using.  We've worked on this for the past few years with not much progress - she definitely prefers high tech solutions! - but this time I feel like she is ready to implement it.  I sure hope she continues to use her Yeah/No more frequently because I just love to know what she thinks and hope it will help cut down on her crying a bit.

That's the update for now.