Back in the Saddle Again

Emma took a couple of months off from horseback riding this winter.  It was just too cold and snowy and she and Julia would give me a hard time about heading out to the farm.  Plus, I was more than exhausted from just keeping up with our hectic pace of life and needed a bit of time without running to and from all the extra-curricular activities.  So we decided to just take a breather and wait for better weather.

Now that the weather is warmer we've returned to the farm.  Emma didn't seem to lose a beat - sitting straight up for long periods with less time hunched over.  The girls were happy to see the "critters" again and noticed that a miniature horse was added to the mix of goats, sheep, turkey, and chickens.  The mini horse was very friendly with me but didn't want any of the other critters to get any attention so he ran them off when they came over to greet us.  He also didn't seem as happy to see Emma as she was to see him and we later found out he doesn't like little kids as much as grown ups.  I don't think his permanent home will be with the critters and when we showed up last week with carrots he wasn't in the field with them, making it easy for our beloved goats to munch on the goodies.  I know I've mentioned before that Emma has a fondness for the goats and it seems that absence has made her heart grow fonder with her legs kicking and squeals of delight she gave off when we stopped to see her goat buddies.

Here is a video showing how good she did - Miss Kris was able to hold her hands lower on Emma's stomach and Emma was able to use her arms better to "right" herself.  

Julia was happy to break in her new rain boots at the farm.  We bought them at our trip to the outlets on Mother's Day so she can bring them on our summer vacation.  Although the weather was picture perfect the last two weeks, it seems we are in for a soaking this week so we'll be able to tell in short time if they hold up to the muddy fields she'll likely be running around in this summer.  

We sure are happy for the nicer weather and that we are once again back at the farm!

Adventures in Roller Skating

Julia is once again interested in learning to roller skate.  She has the adorable skates that fit over your shoe and are adjustable and they came with knee and shoulder pads.  Julia's feet are still pretty tiny and I didn't have to adjust the size this spring because she is still wearing the same size shoe as last year.  My girls are lucky in that they have small feet - they get that from Chris.  Anyway, she's been doing pretty good this year and getting more independent on the skates.  She does fall but is now adept at picking herself up and moving on without too much of a fuss.  Right now she skates for about 10 minutes at a time and after that she starts falling more and decides to call it a day.

I think it's much harder to skate outside on the pavement than indoors so I'm trying to find a time at our local roller rink that will let me take her to roller skate and bring Emma into the rink so she can skate, too, in her wheelchair.  When I called the rink to discuss this with them they told me they only allow wheelchairs at a very early Saturday morning session.  This time isn't convenient for us because we work on feeding with Emma on Saturday mornings (with the fabulous Annette!!!!).  I'm going to call again and ask for the manager and see what he/she can do about letting us skate as a family at a different time of day because I think this could be a really fun frequent family outing and I don't want to leave Emma home!

Check out my big girl in action!

Wondering

When you have a child with multiple challenges it's easy to wonder if the decisions you make are the right ones.  And as Mom, I put a lot of pressure on myself to keep up with the various therapies, nutrition, equipment, etc.  Since we are living in the information age you can pretty much bet that if you name it, there is information about it and Goggle is ready to provide various links to learn more about it.

Because we all want the best for our children, we often try and leave no stone unturned when it comes to knowing what is available to our children.  We usually know more options out there than our doctors because we've forged a network with other parents across the nation and the world to learn more about what we can do to help our child achieve their desires.  I say their desires because I've found that - overwhelmingly! - us parents are taking the lead from our children on what they want to do.  For example, Emma is totally into moving these days and by gosh we are going to do everything possible to help her realize her goal of easier, quicker movement.

What is hard, though, is deciding which path to take to help them achieve their goals and staying the course. Because it's easy to find success stories about most of the therapy and equipment options, it's easy to second guess your treatment decision if your child isn't making as many gains as quickly as you hoped.

Emma is amazing us with how much she is moving and doing other new things recently.  She is getting so quick at commando crawling, sitting with minimal assistance on good days, walking at home in her gait trainer, sometimes vocalizing Yeah when she wants something, opening her hands more and attempting to cross midline with her hands more often, sometimes playing independently with her toys, demonstrating her understanding of some new concepts like same and different in addition to just identifying objects by name.  This amazing progress happened within the last year, and most of it within the last 6 months.  To say that Chris and I are thrilled to see all her hard work paying off would be an understatement.  To say that Emma has worked tirelessly (of course she has had an incredible amount of fun and adventure in her short life, too!) to get to this point would also be an understatement.

So, what is the point of this post?  I'll get to that, but first I have to tell you about a little guy that Emma has known for the last 2 years.  He was born very early and had a lot of challenges.  He was further behind on his milestones than Emma when they started out at PT together, but that didn't matter and the become fast friends.  He had very similar intervention to Emma.  His treatment was at the same hospital with many of the same therapists and the same equipment.  But today he is not as delayed in his milestones.  We were happy to see him the other day walking with a walker (not a gait trainer, but the kind like the elderly use) and talking to everyone, blowing kisses and generally looking amazing!  It was so nice to see how good he is doing - he seems close to catching up with his adjusted age!

Running into this little guy started me thinking.  The results of intervention with him and Emma are very different.  If we did not know him and that he had the same intervention as Emma, I might have asked what type of therapy he had and consider trying it for Emma.  I might have wondered if Emma could have achieved her goals quicker if she had the same intervention as this little guy.  And I would not have known that the intervention was essentially the same as Emma but with a varied outcome.

I also think that if we had changed Emma's treatment in the last 6 months and started seeing all the great things she is doing now we might have attributed it to the change in treatment instead of that all her hard work and intervention to date is paying off for her.

While I don't think I will stop wondering if Emma would benefit from other treatments, it's more concrete for me that there is a big benefit in deciding the best course of action and then staying the course.  I also believe that we should adjust the course if it isn't right for our child, doesn't fit into our lifestyle, or is otherwise detracting from Emma's ability to experience life as a little girl instead of a patient.  Because, truly, life for little girls should be about play dates, fun at the park, day trips to the beach, squealing with delight from amusement park rides, playing with dolls and dressing up as a princess, and lazy days around the house.  And not all about therapy or doctor appointments if they can be helped.

I feel like this post is wandering a bit because what is so clear in my mind is so hard for me to put into words.  But, what I guess it comes down to is that I'm glad our encounter with the little guy happened because it made me more aware of my wonderings and helped me to put them into better perspective.  

***Note:  When selecting photos for this post I noticed that I have very few photos of Emma in therapy sessions but I have loads of her out and about enjoying life.  I'm taking that as a sign that we actually are giving her a pretty "normal" childhood.  And that I need to take a few photos of her in therapy so I can go back to them someday when I'm looking to remember when.....

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.