Friday, December 12, 2014

On parenting

I love being a Mom.  Actually, I love, love, LOVE it.  It's the most wonderful and hardest job I've ever had.  Among my goals as a Mom is to raise girls that have good self-esteem, are curious about the world around them, and leave the world a better place than they found it. 

Lots of times I don't really know if I'm doing this Mom job right or not, so my approach to motherhood is that I just go with my gut on hard situations and decisions.  I find my gut has never let me down even if it tells me to do something I think is a bit curious.

This week Julia had her school book fair.  She has become a voracious reader the past 18 months and I've been borrowing most of the books from the library.  However, there are certain books she likes to read over and over again and she wants her very own copy for her bookshelf so it's there whenever she wants to read it.  I completely understand this since I love little more than having my nose planted in a good book.  We talked about her class visit to the book fair and decided she would take some money from her piggy bank and buy her books.  This isn't because we didn't want to buy her books, it's more because we are teaching her about the value of money.  We put the money in an envelope and sealed it up.  There were several bills and a lot of change. 

Judy Blume is her current favorite author.  I loved Judy Blume as a child and find it enjoyable to revisit her books.  As expected, Julia came home from school the day of the book fair full of energy and talking a mile a minute.  She showed me the Judy Blume books she purchased and told me she also bought a book for Emma.  A book for Emma!  That she purchased with her own money. She made sure to tell me and Emma that it wasn't a Christmas present because she already bought and wrapped that at the school holiday fair.  No, this was just a book she wanted to buy Emma because she thought she would like it.  And Emma grinned from ear to ear when she showed it to her.  It's an early reader book and is about a girl that rides a horse and Julia just knew she had to get it for Emma.  She didn't bat an eyelash about spending her own money she took from her own piggy bank on the book.  For her sister.  Instead of buying the two books by Judy Blume that she wanted.

There was a bit of a wrinkle, though.  Julia was a few cents short for the two books mostly because she decided to bring coins instead of a bill for the last dollar and didn't bring quite enough coins to add up to a dollar.  So she put the books on hold and asked Chris at the end of the day if he could go with her to purchase the books and lend her the extra 10 cents or whatever it was and of course he did.  While there he decided he wanted to buy her a book and so she was able to get the second Judy Blume book.  It's not unusual for Chris to buy a book for the girls at the book fair but I don't think Julia thought of that because she was genuinely thrilled about it. 

My heart feels full in these moments.  The moments when I realize my little girl cares so very much about her sister that she decided on her own to buy her a book from the book fair just because she thought she would like it.  When she wasn't selfishly thinking of how many books she could get only for her and how she realized in the moment how much fuller life is if we share.  It's moments like these when I say a prayer of thanks to God for bringing my two special little girls into my life.  And it's these little moments that make me feel like Chris and I are doing a pretty decent job at this parenting gig. 

Monday, September 22, 2014

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.

Wednesday, July 16, 2014

Learner's Permit

Emma has been spending a lot of time in her power chair now that we have the fancy new minivan to help transport it.  She is getting really good at driving it and I've started to let her drive herself around indoors in areas where there is a lot of room - like Target, hospitals, the mall, etc.  These are harder areas to navigate since there is not as much room for error as there is with the great outdoors and Emma is rising to the challenge.

Here are some videos taken of her driving.

The first one is from April and we were in Target.  You can see she isn't driving much and had a harder time hitting the switches in her head rest to move the chair.  We adjusted the head rest a bit and it helped her get better with driving.

The second and third are of her driving in the hospital hallway while Julia was doing a physical therapy session.  As you can see she is doing much better and is interested in getting up close to things and touching them.  In the one video she stopped at the wall and touched it and the railing.  She is very curious about touching things since she now has the power to do that in her power chair.  I had no idea she wanted to touch so many things or I would have had her touching things before!

I have more videos of her outside but the computer is slow today.  Right now we are at the point where she can drive from the back of our driveway to the front.  This is major progress.  She also has been driving around outside near the kids when they are playing without running them over (mostly....I keep the kill switch close at hand to ensure no casualties!).  The one thing she keeps wanting to do is drive out in the street so we are working on teaching her no street.  It's funny - she is going through the same stages using her power wheelchair that toddlers go through when they start to walk.  They bump into things and learn how to avoid bumping into things.  They try and run in the street and {hopefully} learn not to go in the street.  They run away when parents tell them to come here and Emma is doing all of this.  When it was time to come in the other day and Chris told her to drive to the back of the house Emma drove in the other direction because she didn't want to come in!  And she gets mad when we take control of the chair to move her somewhere she doesn't want to go.  Emma is starting to get the hang of navigating herself in this world and it's so wonderful to see!

Of course, when there are people to be watched she often comes to a dead stop to observe all the going ons but even that is starting to get better, too!

Wednesday, July 9, 2014

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!

Tuesday, April 1, 2014

Our new Wheelchair Conversion Van

BIG things are happening in our life.  I feel so very blessed on a daily basis and know that many of the happenings are the result of letting God work His magic.

One BIG thing that happened is we purchased a wheelchair accessible van.  WOWZA!  We have been thinking and wanting one of these vans for a long time now but have not been able to find one that we can afford.  The price tag on these vans are ridiculous for a minivan - up to $65K new and the used ones are typically upwards of $30K.  At that price, we'll take two please!  Ha!

We told pretty much everyone we know that we are on the lookout for a wheelchair van and our wonderful social worker forwarded me information on one that a local family was selling.  It was a fairly new model - 2010 - and had low miles.  It also had the rear entry option that we thought would work best for our family.  There was a lot of details that we had to work out for us to buy this van since we were buying it from a private party, the owner was deceased and it was registered in a different state, but it all came together so nicely in the end.  Let me just say that I have NO doubt that this van was meant to come to Emma.  All along the way of us purchasing this van I could feel my Dad was at work...and Mom, too.  Thanks, Mom!  The owner of the van recently passed away and that is the reason the family was selling it.  I won't get into all the details, but let me say that it became clear to both us and the sellers that my Dad and the original owner met up in heaven and arranged the whole thing.

And now we have a wheelchair accessible van!!!!!!  A van that Emma loves to sit in more than she loves to sit in the driveway and watch all the happenings in the neighborhood - and that is saying a LOT.  This van opens up a lot of opportunities for us with the most exciting one being that we can now take Emma places with her power wheelchair!  As she gets better at driving her chair and is starting to enjoy the bit of independence that it gives her we want to expand her driving capabilities by teaching her to drive in areas with more people (like the mall).  The van also lets us run several errands without having all the lifting involved with getting Emma in and out of her car seat and the chair in and out of the car.

NOTE:  We were just testing how the chair fits in the car in the video above.  We do have a seatbelt for Emma that attaches to the car in addition to her chest harness that is not shown in this video.

Since there are many different styles of wheelchair vans, I'll give a few details on our conversion for families considering which van will work best for them.

  • We chose a rear entry.  This seems to work best in our area since:  1.)  All the handicapped spots at the places we go are frequently taken and we need to park in a regular spot and a side entry wouldn't really work for a regular parking space  and 2.)  We go into the city a lot and nearly all the handicapped meters are at the end of a block or before a driveway so no one can legally park behind us making it easy to use a rear entry option

  • The second row seating has seats that flip up.  If both seats are flipped up, then you can fit two wheelchairs in the ramp area.  We always have one chair flipped down for Julia and that works great for us.  Emma's manual chair is small so it can go right next to Julia if Emma is transported in her manual chair.  Mostly, Emma likes to travel in her power chair and that is much bigger so it fits in the back section of the van.  At first I didn't like Emma sitting so far back from me but she LOVES driving in the car in her power chair and I've gotten used to it pretty quickly and now don't mind it.  We can also flip down the other chair in the second row and take along a friend or family member for a ride or we can put Emma's car seat there for long trips when we don't want her to travel in her wheelchair.  

  • The tie downs that came with the car are a belt style.  I have to say they work fine but are a bit annoying for the frequency that we go in and out of the car.  We are a VERY active family.  There are other tie down options that are quicker to use and we think we might change the tie downs in the near future.  Stay tuned.
  • Overall, we are highly satisfied with this van configuration so far (click here to see the manufacturer details on the conversion in our van).  There are trade-offs with both side and rear configurations but this conversion seems to work better for us than I anticipated.  Already I've been to several parking lots with no handicapped spots left and the ability to park in a regular space with the rear entry was a big help.  

Side note:  Several weeks ago I threw my back out doing laundry - not that I needed one but it gives me yet another reason to find a reason to hate doing laundry!  It was so bad that I could hardly move for a couple of days.  NOT a good thing to have happen when your job is Mom to a non-mobile cutie pie.  I was seriously scared about what I would do should it not get better quickly.

Thankfully, several trips to the chiropractor and several weeks later my back is doing much better.  I am very aware of how important it is to keep my back in shape for the long haul - Emma is only 6 after all - and plan to add in more strength training at the gym.  This new van has already had a positive effect on my back!

Thursday, February 6, 2014

Dreaming of Sun

I have the most incredible husband.  There are many reasons I can say this, but today I'm saying it because in a couple of weeks he is going to take me away from all this snow and ice to a tropical beach for a few days to celebrate my {recent milestone} birthday.  Just the two of us.  Just the two of us.

Newly engaged and without a care in the world! 
This time away will be so good for us!  We can sleep late, eat what others cook, swim with the fish (or to the wet bar!), and relax on a beach.  We can reconnect with each other without a million interruptions, reflect on our last 10+ years together and dream about what our next 50 might hold.  My hope is that we come back refreshed and ready to take on the controlled chaos of our daily life.

We are so lucky that we are able to get away.  It's not easy to find sitters for my girls;  our household isn't easy to drop into days.  For a few hours it's pretty easy, but when it stretches into a couple of days it gets trickier.  There are things to learn for Emma - how to work the CIs and talker, how to prepare her drinks and food, how to use the various chairs and potty seat, tips for going out and about.  And then there is the matter of how to work our TV remotes :-)  None of these are hard but they aren't always intuitive - especially the TV!

I'm planning on pulling together a how-to binder for the house complete with pictures.  If I forget anything I'm sure Julia will be able to fill in the blanks.  Sometimes I think Julia could run this household - maybe that's typical of first born children?  Regardless, I'll feel better once it's done and will be able to relax easier on the beach with a fruity frozen concoction.

Julia is excited to have guests come and stay at our house and is happily anticipating her own adventures while we're away.  Past experience makes me think Emma isn't as excited about our getaway but she should roll with it fairly well.  The amount of time we will be gone should be just enough to recharge but not too long that I'll spend my time missing my babies.

Here's to warm weather, sandy beaches, and some alone time with my favorite man!

Thursday, January 30, 2014

AAC Update: Emma and her Eco2 with EcoPoint

Our journey continues with Emma's AAC device.  Here are some other posts I've talked about what we are doing with her talker if you want to get caught up.  NOTE:  Emma also has a Yes/No response and low tech ways of communicating but for the purpose of this post I'm only focusing on her use of the high tech eye gaze device.  

Emma is now 100% eye gaze again with her device.  She decided that her hands weren't helping her talk like she wanted and agreed to look at the device again.  This is a big decision on her part because we can't make her look at the device and you can't navigate it with your eye gaze if you don't look at the device.  I consider this a great milestone for Emma.  

When we received her talker we had a long discussion and decided to set it up for 60 1-hit Unity.  That basically means it could show up to 60 icons at a time on the screen.  Emma had some success with it but not enough.  I saw her struggle with it and it was frustrating to her and me but I didn't really know what to do about it.  Then we met up with another little girl in our area who is about the same age as Emma and uses a device (a MyTobii) to talk.  She was saying all kids of things with her talker and actively engaged in conversation.  It took my breath away!  After talking with her Mom for a while I decided to change Emma's device to 45 1-hit Unity so there would be up to 45 icons on the screen at one time and they would be larger than the 60.  The less icons, the larger the size of them.  Her device can do anywhere from 45 - 144 icons at a time on the screen.  My plan was to dial the number of icons back and make the bigger and more easily accessible for Emma and see what happened.

The 45 set-up had things laid out a bit differently than the 60 set-up so I spent a Saturday night changing up the icons to more closely match the 60 set-up.  Emma had a lot of the locations memorized and I didn't want to confuse her with having the screen look very different.  Plus I figured I'd like them in similar spots because if she moves back to 60 Unity it would be an easier transition.  The 45 set-up seems to definitely make a different for Emma.  It seems easier for her to actually activate the icon she intends.  You could see her try so hard to activate it on the 60 Unity and get frustrated because she would activate an adjacent icon.  

With the 45 Unity, Emma seems more relaxed and happier to interact with the machine.  It seems easier for her, she is having more success in telling us what she needs, and she is stringing more words together.  She is also using it during working sessions with her SLP at school and has even initiated some interactions with people on her talker.  This is huge since she typically wouldn't use her device at school no matter how much her team encouraged her.  

Here are some things Emma has done since we changed the device, although she isn't very consistent about it.  I think that will come in time and for now I'm happy to see her start to tell me more about what is going on in her mind.  
  • She has started to chat more.  She will often use it for several back and forth conversations.
  • She will use it to get our attention.  If we walk away to do something or are in another room and she wants us she will say something.  If she wants a drink and I'm preparing it she will select over and over and over again the same icon saying Drink Drink Drink Drink Drink similar from what you hear with impatient children!  It's quite funny to me and always makes me smile :-)
  • At dinner one night she leaned over to the table and tried to grab her bottle but couldn't reach it.  She used her device to say the following in under 30 seconds without me modeling what to say first.  It still blows me away that she said this so quickly and appropriately:  "you help drink you get drink get".  I got her message loud and clear - she wanted me to help her get her drink.
  • Someone came up to her in the hallway at school to give her a marshmallow snowman treat.  Her aide told the person Emma doesn't eat them and Emma immediately said on her talker "don't eat" and gave the person a smile before starting to drive herself away down the hall in her power chair to her Kindergarten classroom.  Her aide was so happy to tell me about that and I was thrilled to hear it.  
  • Today when Emma came home from school I asked her how school was and she said "good".  After she told me she wanted a drink I walked over to the fridge to get it and she thought I was taking too long so she said "I want my    ".  I returned around the time she said my so I finished her sentence with You want your drink?  and Emma smiled big to indicate yes, that is exactly what she wanted.  
All this has happened over the last month after a very long stretch of Emma refusing to use her device.  I'm hopeful that Emma will continue to grow and use her device consistently enough to tell us how she feels (especially important to me because when cries I don't know what's wrong or if she is hurting), what she needs, what she wants, how her day went, who she played with, etc.  

Emma has a long way to go before I would consider her conversational in a social setting but I am convinced she will get there and I think it will be sooner rather than later.  Especially since we're going to set up some play dates with her friend with the talker.  Emma was VERY motivated to use her talker after her interaction with her friend.  We are also hoping to send her to the summer session at a local school that specializes in augmentative communication devices and power mobility to help prepare her to hit the ground running in 1st grade.  

Initially Emma's school team was unsure about moving her to the 45 Unity.  They think (as do I!) that Emma is very smart and that 60 Unity will give her a lot more opportunities to speak with less effort.  I was happy to hear they think she is capable of the 60 Unity cognitively but I brought up the observations I've made around her use of 45 vs. 60 and that she needs to get some early and consistent success with the device to help her engage more.  Since Emma doesn't use the device as good at school it was important for them to know what changes I saw at home until she starts to demonstrate the same things at school.  We also talked about her diagnosis of cortical vision impairment since she received the device and we had her vision therapist weigh in on 45 vs. 60 icons in light of her most recent Ophthalmologist report.  Given all this we decided to keep her on 45 1-hit Unity.  

The daily reports over the last two weeks have been really good.  All her therapists report that she is more actively engaged and focused.  She is making a lot of progress in all things and not just communication.  She is doing well at Kid Writing which is something I thought would be super hard for her.  She is doing well with simple addition and subtraction.  She is distinguishing between singular and plural words with >90% accuracy - something that is VERY difficult for someone hearing with cochlear implants.  She is walking longer distances in her KidWalk indoors (she loves to walk outdoors but not as much indoors) and driving longer distances in her power chair.  Emma is just full on right now.  I know from past experience that these periods of rapid progress are often followed by periods of sustaining before she kicks into another period of progress again.  

Wednesday, January 29, 2014

2014: Thank goodness you arrived!

I've been a bit quiet here lately and it's not for lack of things to write but rather that I've been focusing on other things at the current moment.

This year started off well - we spent New Year's Eve night at a hotel downtown.  Chris and Julia made a pit-stop at the lobby Starbucks to fuel up for the night and we wandered over to Reading Terminal Market to look around and see the Christmas train display.  Then we walked to Franklin Square Park for the family New Year's Eve celebration that started around 4pm with some light shows, a dance party and playground fun and culminated in a 6pm firework spectacular.  We were able to meet up with Julia's friend and her family there and the girls were thrilled to see each other over the "long" Christmas break.  Afterwards we went to the hotel, ate a very underwhelming take out meal and hit the indoor pool (which was colder than I would have liked!).  On the bright side our room was amazing and the beds were super comfy.

We were not thrilled with 2013 - it was a sad year for us with losing my Dad and Finnegan and were more than happy to say good riddance to 2013 and ring in 2014.  Speaking of New Year's Eve:  In true 2013 fashion it had to go out with a thud.  Our room was on the 19th floor of the hotel.  I stayed with the girls to try and get them to sleep because Emma is NOT a fan of sleeping in hotel rooms and Chris was hanging out at the lobby bar for a drink.  I finally got the girls off to sleep and started to doze off myself when the fire alarm sounded.  It kept going off for about 20 minutes.  Thankfully (?), both girls slept through it.  Chris was in the lobby and they wouldn't let him up to the room - obviously - considering every elevator has a sign posted on it not to be used in case of fire.  I was a bit panicked about the thought of carrying Emma down 19 flights of stairs in the middle of the frigid night with a scared Julia in tow.  I stayed in the room hoping it was a false alarm since it occurred too close to midnight for me to believe it wasn't a drunk partier pulling the alarm.  The talking, flashing hotel fire alarm said to stay put they were checking it out and then about 45 minutes later they said it was a false alarm.  Chris was keeping me posted (via text) of the fire department activity in the lobby and after everything was cleared Chris came back to the room just in case anything happened again he would be there to help.  Thankfully it all ended well and we had a good sleep after that.

On New Year's day we could see some of the Mummer's Parade outside our hotel room window so we decided to go and watch a bit before we left.  It was fun to be a part of the parade and Emma loved every minute of it while Julia was ready to go home almost immediately.   These two girls crack me up and couldn't be more opposites.  They balance each other out so well and make life so fun.  How blessed we are!

Here's to a Happy 2014!