July 6th, 2015- The Walk

I have been meaning to post for SO LONG!  We are smack dab in the middle of summer, which means my to-do list is long but motivation comes in short bursts.  But thank you for our continued interest in our girl.

We have had a lot go on since our last post; and yet, not so much either it feels like!

May 1st we had our annual meeting with Early Intervention.  Every year they have to do an annual evaluation of the child 
with all of the specialists and the case worker to check on progress and determine what the goals for the child are for the coming year and re-evaluate current services and decide if they need to be modified.  So our case worker was there, along with the physical therapist.  They did an overall evaluation of Ally's skills in all areas- and I was overjoyed with the results!  At the time, Ally was almost 14 months old, and her adjusted age was 12.5 months (approximately).  Almost all areas were at her adjusted age- and most were better!  These areas include things like speech, fine motor, gross motor, emotional, social, etc.  She is doing so well, you'd never know she had any diagnosis whatsoever.

Our physical therapist has been especially pleased with Ally's progress.  She has continually developed (mostly naturally) each visit month to month.  She told us at the evaluation that Ally would probably be walking independently within a week or so and she didn't see a need to continue therapy.  She did, however, say that Ally would need the orthotics to help with her balance and muscle tone.  She gave me the number to call to get that process started by getting her fitted and get them ordered and that she could stop in a few times a year just to check on her and how the orthotics were fitting and let us know when she would need new ones from outgrowing them.

Sure enough, within the next few weeks, Ally was officially walking!  She walks everywhere now, and even climbs stairs (when she can find them).  She also enjoys climbing on and off kid-sized chairs and standing up in them!  (Basically she tries climbing anything she can- tonight she climbed up a stack of thin, shirt-box sized boxes and over the armrest onto the couch!)  The other day we were at Russell's parents home where they have an inflatable kiddie pool for the kids to play in.  Once Ally was comfortable enough to go near her rowdy brothers playing in the water, she got in the pool.  And then out.  And then in.  And out.  She didn't really play in the water so much as practice getting over the edge of the pool as much as possible!  To put Ally's physical development into perspective: last week I took Ben and Ally to our local library for a puppet show.  Luke was spending the night with his grandparents that night, so he wasn't there to be the ringleader and show the younger two how to behave.  Ben probably would have sat and watched the show, but Ally would NOT stay in her stroller, and once I took her out she wanted to roam around.  I took her to the back of the auditorium to run around, but what she really wanted was to go up and down the stairs along the rows of seats.  I let her do that on one far side a few times, but then Ben didn't want to sit either, so I knew after 15 minutes into the show that we couldn't stay.  I was a bit frustrated, but I tried to think about it this way: for a while we didn't know when, or even if, Ally would be able to walk and move like she was.  And not only was she being a rambunctious toddler, she was doing it ON SCHEDULE.  Perspective truly is everything, and we are so thankful!  

One of the chairs she enjoys climbing in and out of- enjoying Luke's t-ball game!

Ally also tries to keep up with her big brothers at the playground.  She enjoys the stairs (of course), and tunnels and bridges (gulp!) and even the slides- sometimes by herself!  In addition to this, she is also able to give high fives and kisses when requested (though she doesn't always comply).  She also enjoys her 'dragon', as you can see in the video below.

So after the annual evaluation, the month of May happened.  I LOVE the month of May, because it is Dandy-Walker awareness month, but it is also an extremely busy and sometimes stressful month at school with testing and the end of the school year.  So I did not call about getting Ally's orthotics ordered.  We were supposed to have a meeting June 3rd with our case worker to go over some possible financial help with the orthotics (they are NOT cheap!) but seeing as I had not had Ally's feet measured, we postponed the meeting until I had everything worked out.  Plus, she was doing so well with her walking, I wanted her pediatrician to give the final word about whether she really needed them.

Ally's 15 month check up was June 8th.  Everything looked really good!  She's up to just over 18 lbs., and she's on the charts in all categories (the low end of the charts, but that's ok!).  However, while our pediatrician did say she think her tone has improved (YAY!) she thought she would benefit from the orthotics.  (Boo.)

So I took Ally to the orthotics place to get fitted.  Basically they made a mold of her feet.  The technician put a nylon sock up to her knee, then wrapped her foot up to just below the knee with fiberglass wrap, kind of like a cast, then sort of massaged it to mold it better to her foot and ankle.  Once it was hard enough, he cut it off of her and repeated it on the other foot.  I picked out all the colors and patterns for the different parts of the orthotic (mostly purple with some pink and some butterflies :-)  She still doesn't have them yet because we are waiting on (hopefully) some grant money to come though to help cover the cost.  My only regret with this is that she really should be wearing shoes a lot more than she does but I've been afraid to buy any for her because I want to make sure I get them big enough to accommodate the orthotic and be comfortable.  She wears a 3 right now without them, but I didn't want to get her any more shoes that she won't be able to wear (the only reason we know that is because someone gave us some hand-me-downs and a pair of size 3 shoes were in there and they are all she wears right now).

As I said before, May is Dandy-Walker awareness month.  It is also the month for Carter's Run for Dandy-Walker.  Spring is a busy time for our family because Luke plays t-ball and Russell coaches and does men's church league softball, so there are constant practices and games.  This year there were 2 games the weekend of Carter's Run, so the boys stayed home and Ally and I journeyed together to Ashburn to meet Mom and my nephew for the run.  We had a great time as usual!  I intended to help this year instead of actually walking, since it was just Ally and I.  Mom was convinced by my nephew to sign up to walk the day of the event, and they both did it!  Ally and I helped with the dunking booth and hung out at the Alliance tent.  We got to meet some new DW families and meet up with some of the ones we met last year.  I believe there were a total of 9 DW families in attendance.  It was a great even as usual, and we are already looking forward to next year!  We were unable to make the Dandy-Walker Alliance day at Nationals park since it was on Father's Day Sunday.  It would have been too much for us to try to make it back home afterwards for Russell to work and Luke to go to camp the next day.  However, we are excited to announce that more MLB parks are participating in DW Alliance day!  There was a game with the Pittsburgh Pirates stadium in May and there will be a game at the Baltimore Orioles stadium in August.  I am excited to see how awareness is spreading and there are more events for DW families.

I believe there were 9 DW families there if my count is right!  I am proud to be a part of this extended family!

One of the things I noticed at Carter's Run was the diversity of the DW children that were there.  Some, like Ally, have almost no affects from their Dandy-Walker, while others are severely affected, plus some in between.  Some have shunts, others do not.  As I interacted with these families and their children, I couldn't help but feeling something akin to 'survivor's guilt'.  We were prepared for the worst but other than shunt surgery Ally has been a very normal little girl.  It was hard to talk with families whose children use service dogs, walkers, and go to day care for adults with disabilities and then say, "This is Ally.  She has Dandy-Walker too."  I was telling my Mom about my feelings and said, "It's just not fair."  She responded with, "Don't feel like that.  Just feel blessed."  It's still hard to handle those feelings, but I do try to see it that way.

This diversity, however, also got me to thinking about this blog.  While many of you who read this are family and friends, others are those who have either stumbled here accidentally during your desperate search for information about dandy-walker or have been directed here by me from your post for information from the Dandy-Walker parents facebook page.  We started this blog to inform our family and friends of Ally's progress, and that is still a central feature.  However, the main reason I continue the blog is so that other dandy-walker families will see the hope in the diagnosis- that it is not always as terrible as doctors make it out to be.  However, I do want families to see the whole picture.  We are incredibly blessed by Ally and her progress so far, but others have more issues and stumbling blocks in their journeys to work through.  So I am hoping to add a new feature to the blog in the near future to help with this idea, so stay tuned!

Finally, on June 18th we celebrated Ally's one year 'shuntiversary'.  She has now had her shunt in place for a whole year without any problems.  I continue to pray for many, many more complication-free years, but we just never know when there may be an issue.  We just continue to watch and pray.

 Pictures one year later.  You can barely see the scar or the shunt sticking out anymore.  She's actually starting to get some hair!

So Ally is now 16 months old.  It is so hard to believe!  We had family pictures done in May as is our tradition, and the final picture is her 16 month picture that I took.  Our girl is strong and growing and beating the odds.  Thanks for coming alongside our Ally girl during her journey.

16 months!