One step at a time

Emma all dressed up for a lunch cruise on the river.  It was a wonderful Emma/Mommy date!

The journey to find a kindergarten placement for Emma has been filled with anxiety for this Mommy.  It feels like it is a big decision and one we are not likely to change easily.  We are told you can change the IEP up once it is started, but my experience is that it is easier said than done so we are hoping to get it right the first time around.

We have toured the options the school district suggested.  None of them were a slam dunk.  We do have pretty significant ideas on what type of classroom, therapies, etc. we want for Emma and I think our visits to the schools clarified our vision so I'm very thankful for that.

It looks like we will be working with the district to find out exactly how individual they are willing to get for Emma's IEP (consider yourself blessed if you don't know what an IEP is - it stands for Individual Education Plan for those new to education & disabilites speak).  I've put a call into our district coordinator to start the discussions.

We are hopeful that it will come together, but I am sure that I will have a lot of angst until it does.  Hey, another few gray hairs on my head will likely go unnoticed!

I joke, but would really appreciate any prayers you could send our way until this is all settled.  Fingers crossed it will be before the new school 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.

Hopeful Parents

My monthly post is up over at Hopeful Parents.  You can view it by clicking on this link or read below.

Life is precious

Life is precious and fleeting.  This is a heavy lesson to learn and it's one I've become keenly aware of since joining the parenting journey of a child with special needs.

Over the past five plus years I have met families - so many families - that are in some way impacted by a child with special needs.  I've learned to care deeply for their children and include them in my prayers and I know they include us in prayer, too.

Some families I've met in person, some I've only spoken to through long distance phone calls, some I've met only online.  It doesn't matter how we've "met" because I am invested in their families.  Their triumphs, their tragedies and everything in between.

Some precious children are very sick.  We expect that we will have to say goodbye to those children and pray fiercely for a miracle while also praying for a good quality of life while they are here.  It is sad when they leave us and that fact that it is often expected barely softens the blow of the loss.

Some precious children are stable and we are so thankful for stable, for it can be a wonderful blessing to have "stable" when living with a child with special needs.

Some children are defying all the odds stacked against them.  These precious children are proving doctors and tests wrong.  They are walking when they shouldn't.  They are seeing when test results say they cannot see.  They are now hearing after being told they cannot hear.  They inspire us to continue to pray and to believe in everyday miracles.

The fact is all of these children are changing people and the world around them for the better.  Often, as is the case with my daughter Emma, without even saying a word.

This week our community will say goodbye to a little boy, Gavin, who inspired so many thanks to his amazing mom who openly shares their family journey on her blog Chasing Rainbows.  This was unexpected and hits very close to home.  I know Gavin, I know Kate;  mostly through phone calls, facebook posts, blog posts and occasional face-to-face meetings.  Gavin is only a few days older than Emma and they have a lot in common.  Kate and Gavin inspire me and my heart has been heavy since I heard about Gavin's sudden decline.

The past 5 years have changed me.  I try hard not take the days for granted.  I tell and show my children each day that they are so very loved.  I celebrate accomplishments big and small.  I am inspired often to dig a little deeper and strive to become a better person, wife, mother.

Life is precious.  Life is fleeting.  This much I know.

*Inch*stone Captured

When Emma was very young, when we first found out about her cerebral palsy, we thought that perhaps only her arms would be effected.  We saw that she wasn't using her arms or hands very good but we thought her legs seemed to be moving around pretty well.  I had researched a ton on CP and found that usually CP has the following effects:

• All limbs effected
• One side of the body limbs effected (i.e., arms and legs on right side of body)
• Legs effected

We wondered early on if it was possible that Emma would "only" have her arms effected and that the rest of her body would work fine.  Doctors didn't really have an answer for me and we started therapy to address her arms.  Chris and I expected that she would walk but maybe have trouble with writing.  Let's just say our expectations have been reset over the years because as of now she is neither writing or walking unassisted.  

Emma had THE BEST occupational therapist (OT) for early intervention and she was able to see her up to 3x/week and made a lot of progress with her hands and arms.  Since we moved Emma has only received OT at school and we've noticed that her arms were getting tighter and her resting position was often with her arms curled up, wrists bent and thumbs inside her fist.  She wasn't always in that position so I hadn't realized just how tight she had become until I noticed that in most of her recent photos her arms were in this non preferred position.  Here is a photo with her left arm in the curled up position, but lots of times she had been curling up both arms.  

I started to worry that most of the doctors Emma saw were not even looking at her arms.  They focused on her hearing, her legs, her hips, her feet, her feeding, her talking, etc.  Everyone I talked to about her arms sort of glossed over my concerns so I made an appointment for her to see a physiatrist and I'm so glad I did!  She is concerned with the whole of Emma.  Not arms, not feet, not ears, etc.  All of Emma and she listened to my concerns about her arms and made some very good suggestions and she is now on team Emma and in our every 6 months appointment rotation which makes me very happy!

Some changes we've made is focusing more on arm/hand/wrist stretches, purchased Benik splints to help her wrists and thumb stay in a more neutral position and added in an extra OT session outside of school (not sure I'm thrilled with the provider, though, so we will likely be looking around for an alternative provider that fits in our schedule).  

Emma with her splints on

The past couple weeks I've noticed some changes.  I've found her sleeping with her arms over her head on several occasions.  She has a hard time raising her arms up high and in rest she typically slept with her arms curled up or with them by her hips. And then this morning when I went in to wake her up she seemed to be starting to stir and she brought her forearms over her eyes and rubbed a few times.  She didn't rub her eyes with her fists, but did slide her forearm back and forth so there was no mistaking it was a rubbing of her eyes before she opened them like most of us do in the morning.  And then she opened her eyes and was a bit startled to see me standing over her smiling down and she giggled.  

When we were in Washington D.C. Emma was resting in the corner of a chair and she brought her hands to her mouth and put her finger in it like she has been sitting like this for years.  She hasn't and it was big news in my book that she was sitting like that while moving her arms so loosely.

Yesterday we visited the zoo and Emma was very interested in the animals - she is branching out from her love of watching people at the zoo to attending a bit more to the animals ;-)  At the giraffes she even reached out for the fence, placed a finger on it (wow, this is HARD to isolate a finger from her fist!) and then her open hand on it before swinging her arm over the whole bar.  I caught a bit of it with my camera and was so excited because this was a big *inchstone* for Emma.  

Emma's starting to use her arms more and it's worth documenting;  it's worth celebrating!