Strawberry Picking

Julia finished up school for the summer on the 8th - a week earlier than Emma - so we took advantage of the extra time and went on a few day dates together.  Julia is a lover of strawberries!  That is, she really LOVES strawberries.  She can eat an entire container all by herself in one sitting so it was only natural for us to head out strawberry picking on one of our Mommy/Daughter day dates.

We dropped Emma off at school one day and headed to the orchard.  We were the first arrivals for strawberry picking and were treated to our own private hayride to the strawberry fields.  We each had a container to fill and it took us a while to find only the **best** strawberries to take home.  Of course we had to do our fair share of sampling to determine exactly which ones were the best...and as others joined us in the field it seemed like they all needed to taste-test the strawberries, too!

Julia sure does have an eye for the juiciest of strawberries and she made sure we took some from each row.  When we caught the hayride back to the cashier there were lots of people heading out to pick strawberries.  Getting there so early and having the fields to our self made the date feel more special and I'm so glad we had that time together.

We plan to head out to the orchard again for some blueberry picking with Emma now that she is done school.  Blueberries are a favorite fruit of Emma's and they are grown on taller bushes so she will be able to pick them easier than she would strawberries.  We might even pick some peaches, too, since they are in season now.

I'm looking forward to having many more special moments with my girls this summer.  Bring on the fun!

Hopeful Parents

My monthly post is up at Hopeful Parents.  I was a day late and sometimes that just happens ;-)

You can read it by clicking on the link above or you can read the post below.

Reclaiming FUN

I'm a day late on this post and I really am sorry about that.  I'd love to say that being late is not typical for me, but I can't.  Being a day late is not typical but late in general is how we typically roll.  This is not by design but a side-effect of our current life situation.

Amazingly enough, we made it to an appointment early one day this week and my oldest daughter said to me - "Something must be wrong.  This never happens. We're never early."  Thankfully nothing was wrong and I had a moment to talk to my daughter about a time in my life when I was usually on time or slightly early for most things.  I recall her laughing a lot during that conversation ;-)

I am currently in all-out planning mode for our summer and it is not a moment too soon...my propensity for lateness even carried over to my planning.  My oldest daughter is already out of school for the summer and my youngest wraps up this week with a summer session of 5 weeks schedule for later in the summer.  In addition to the school schedule we have therapy schedules that effect our summer plans.  Our family brainstormed a list of fun things to do this summer.  It's filled with wonderful ideas and the bonus is most of the things are cheap or free which means we might be able to complete many of them before school starts.

But planning the fun has been more difficult than I imagined because my little one has afternoon therapy sessions most days of the week.  Summer hasn't even started yet and I'm already annoyed with the frequency of her therapy sessions!  I have managed to adjust the schedule so there will only be 3 days/week with afternoon sessions instead of the standard 4 but even that seems extreme to me for summer.  And this made me quite grumpy.

Then I dug deep and reminded myself that we are in control of our schedule.  I always knew this but when your child is so far behind in meeting developmental milestones and is {actually} starting to make some wonderful progress I find it hard to remember to slow down or stop for a bit and I needed to reminded myself.

So I am planning our summer schedule with a high priority on doing most of the fun activities on our list and then I'll see what therapies work with our plans and we'll cancel or reschedule the rest.  We are making the choice to prioritize fun over therapy and tracking unmet milestones.  This decision made me very happy and I feel like our family will be more balanced this summer.  And I know Emma and all of us will thrive.  And that is something that makes me very Hopeful!


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Kristina is the mother of two charming daughters and wife to a wonderful man who puts up will all her wild ideas.  She works to raise awareness of cytomegalovirus (CMV) and preventing CMV exposure during pregnancy.  Kristina graduated from the national Partners in Policymaking program in September 2010 and is an advocate for disability rights and inclusion education.  You can read more at howlifehappens.blogspot.com

Potty Technique

Potty training with Emma is coming along really well.  She understands potty and when I ask her Yes/No if she has to go she is pretty quick to respond.  However, she does not initiate requests to go to the potty so that makes it a bit tricky.  For now we have her on a schedule and she mostly has dry diapers but some days her schedule doesn't mesh with our planned activities so there are days when I let the schedule "slip" a bit.  Not often, but it does happen.  Also, when we are out and about she is getting a bit better about sitting on public toilets about 50% of the time, but the other 50% she still tries to arch her back and not sit on the seat so it's a hit or miss in public.  The only exception is the little potties that are in the restrooms of the Children's Hospitals we visit.  She loves to sit on the little potties and I can't blame here - they are much cuter than the huge ones in the public handicapped restrooms.

We've had various methods and techniques for Operations Potty Train Emma and what I've been doing lately is working well.  Since Emma is very long and getting longer by the day in addition to getting heavier as she ages I want to get her used to being changed without a changing table.  I'm still very friendly with her OT from Early Intervention and she suggested I try having Emma stand for diaper changes and I loved that idea.  Now, instead of moving her to bathroom and back to living room to put on her diaper then back to the bathroom to wash her hands, my current method is all done in the bathroom and it also works for when we are in public.  Plus it saves my back a bit and decreases the time needed for potty breaks.

This is our current method:

1. Place Emma on potty at appropriate time
2. When she is done have her do a word approximating for All Done.  She would love to just cry or fuss but that doesn't get her off and so she is getting pretty good at the word approximation of All Done.
3. Set up our kitchen stool so that it is leaning against the door jamb so it can't move. 
4. Take Emma off potty and lean her over the stool.  If her legs are crossed move them apart a little. Put on diaper while she is in standing position.  It took a few tries to get the hang of putting on the diaper while she is standing up but now it's a piece of cake.  I also stand right behind her so she can't fall backwards since she does hang on the stool and it could fall backwards even though it can't move forwards.  Note:  When we are in public restrooms, I make sure her chair wheels are locked and lean her over the side of her wheelchair so her hands are on the seat and her belly is against the armrest and it works fine.  
5. Turn stool around and stand Emma on the bottom step so we can wash her hands.  She is now trying to get her arms up to turn on the water and she is making progress towards that each day.  Washing hands could be Emma's FAVORITE part of going to the potty.  

And here are some photos showing our method.  If anyone reading this blog has questions or suggestions please leave me a comment.

Photo edits

So I just played around with editing a few of my photos.  I'm using a new method and like how they are turning out.  Here are a few examples:

I still have a learning curve for fine-tuning photos edits, but I'm getting there slowly but surely.

Eating Update

Sometimes it's hard to see the amazing progress Emma is making when there are so many things we are working towards.  A friend reminded me of this over the weekend and so I want to take some time to celebrate how far Emma has come at mealtime.

Meals with Emma were a challenge from the beginning but her recent progress with eating and communicating is making meal times more enjoyable.  The fact that Emma takes all her food and drink by mouth and has never had a feeding tube is somewhat unusual for children with Emma's challenges.  Many children use a feeding tube for reasons that span the spectrum from using it to supplement meals all the way to completely replacing oral feeding.  Emma's slim body along with all food/drinks taken by mouth has - at times - made for some stressful meals but now we are at a good spot with eating.  She has a desire to eat and is really motivated to eat table food but her chewing and eating skills are limited and put her at a high risk for choking.  Her doctors (and us!) want her to continue progressing towards table food so she had an evaluation at the Feeding Clinic at CHOP which is rated as the best feeding clinic in our area.  

The evaluation overall was good.  It seems like we are doing all the right things to help Emma achieve her goal of the eating food off our plates instead of her own plate ;-)  We are moving her towards thicker and chunkier purees, giving her mashed foods, offering her meltable foods, assisting her with self-feeding.  Emma sooooooo wants to hold her spoon and feed herself!  The feeding team gave us a few suggestions including focusing more on drinking from a cup and having her therapists at school carry-over the suggestions during snack time.  Overall, though, it seems like we are already doing everything right to help move her along in starting to eat more table foods.  It will just take time and practice.  I do have to confess that I was slightly saddened that they couldn't give us a magic pill...

Since Emma isn't independently eating and she would like to have more control at meals we continue to use the iPad during meals to give her a voice and more control.  She uses it really well most days to let us know if she wants to eat or drink. We had been using the program Proloquo2go but after working with it for a year and a half we decided to try out another program.  Emma's friend had been using My First AAC app and when I saw her use it I knew it would be good for Emma since you can LOCK the screen so it doesn't keep scrolling which was one hurdle with Proloquo2go.  This feature along with the pre-made categories filled with pre-school age words really makes this program a good fit for us.  

Here is a video from today's lunch.  The screen is set up with two icons - Milk and Fruit.  The program allows for the screen to display up to 8 options but Emma's motor control isn't good enough to accurately select between 8 items with her hands and 2 seems to be the magic number for her accuracy.  Her communication being limited by hand motor control is a key reason we are moving towards the system that uses eye gaze technology - we don't want Emma limited to choosing/saying only two items at a time.  Anyway, we use Milk to mean drink and Fruit to mean eat since we can only show 2 items at a time.  Emma knows this and is quite good at requesting what she wants without prompting.  Using the iPad during meals has cut down on lots of crying when we are trying to guess what Emma wants.  You can see the screen of the iPad at about 1:05 into the video.  

Note:  I would say that sometimes I could forget to focus on the fact that Emma now has a method to request food items that she uses consistently during meals and that she actually takes all her food/drink by mouth and instead focus on the fact that Emma can be quite messy while eating.  But, I'm learning to celebrate her progress rather than focus on what we are still trying to improve!

Here are a couple of more videos from the other day.  Notice how Emma has the choice of two different food options - a chunky applesauce and rice krispies with almond milk.  Both are harder for her to eat than a puree and she is able to request which food item by her protest sound or happy sound.  It will be nice once we have our own Eco2 so we can program it with multiple meal items that she can access via her eyegaze instead of being limited to 2 options as she is right now on the iPad.

City Photos

Chris arranged for me to spend some time with a photography teacher for my Mother's Day gift.  It was such a thoughtful and amazing gift and totally took me by surprise!

We juggled schedules so we could meet today and I had so much fun!  It was nice to be reminded of some things I do well, some characteristics that I could improve (i.e., stop chopping off people's limbs when photographing them), and to talk about some of my photography goals and learn about some ways to make those goals a reality.  The online course I took gave me a solid foundation on how to use my camera and the ins and outs of lighting, composition, etc. but I am old-school in that I love the dynamic of talking face-to-face with people rather than via message board posts.  Needless to say, I really enjoyed the hours we had together.

We even spend some time outside in the city so I could get a feel for some different photo compositions. I took some interesting photos - none of which contain any of my children!  I thought I'd share a few photos (in low resolution for the web) I took that really stood out to me.

I think this one of the Cathedral and city buildings is my favorite.

Now the pressure is on for me to find a Father's Day gift that can compare!  Wish me luck.....

Smilestone

The Tooth Fairy visited our house again.  This time we had a tooth to leave under the pillow!

Ridiculous cuteness:

Emma's second bottom front tooth came out on Friday.  At lunch.  And she didn't eat it!  It was itty bitty and I heard the tooth fairy was super excited to have a tooth this time.

Life is good!