Meet the McNeil Family

Meet the McNeil Family

Wednesday, February 11, 2015

Poem For Waverly

A dear friend wrote this poem about Waverly and shared it with me recently. I love it and I hope you do as well.
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I may never see the color purple again without thinking of Waverly
  a violet’s fragile petal
a sunset, come too soon.

In purple,
  I see thick chestnut pigtails
        momentary smiles
     dark eyes that speak
               and grace.

Perseverance
Silent songs
One foot in front of the other.

Waverly Post Flu

As I mentioned in a previous post, the latter half of December and most of January were dominated by Waverly's health. She had the flu and then a subsequent ear infection. She ended up developing aplastic anemia (basically her body stopped the production of blood cells). It took some additional medications and an iron supplement to get her back on track, but she is finally looking more like herself. She seems happier and her color looks great.

Her illness took a toll on her body. She is much weaker and her walking/standing has suffered. Her aide at school was a bit shocked when seeing her after such a long break. I have often heard that as kids with Sanfilippo get older, each illness can take them back a few steps. Boy were they right. 

We are quickly facing the fact that we are going to need some kind of track system or hoist lift in order to move her around the home. My back can certainly not continue to fully support her as her strength diminishes. I knew we would one day get to this point, but it does not make it any easier.

Disney World 2015

The McNeil family went to Disney World in January and we had a fabulous time. Here are a few of my favorite pictures from our vacation.

The family in teacups - Oliver only likes rides where he can see the outside

Oliver meeting Mickey & Minnie Mouse

Another spin on the teacups

Waverly flashing a smile on our first night of vacation

Oliver also liked the Tomorrowland Speedway

Wavey's Cinderella inspired mouse ears

Waiting for the parade to begin

Oliver was entranced by the Electric Parade

Waverly meeting Mickey & Minnie Mouse

And again

Wavey had a lovely interaction with Snow White. She loves the princesses because they talk to her and this particular princess was quite sweet.

Oliver's tattoo and magic band - he is a huge Donald Duck fan

One of my favorite things about visiting Florida is seeing my dear friend Susan and her daughter, Blair. *Highlight*

Blair & Waverly share a special connection

Oliver - aka Chumbly - wearing his Mickey pants ears

Waverly met her very favorite princess Cinderella and their interaction was beautiful to watch. One of my favorite moments of our trip.

Riding the carousel with Daddy

Walking down Main Street USA

Oliver loved the food and there was no treat rules on vacation

Mickey Mouse autographed Ollie's hat

Oliver waiting for his turn to ride Dumbo