Meet the McNeil Family

Meet the McNeil Family

Sunday, November 17, 2013

Waverly's Birthday Party

On Friday morning we had a birthday party at school for Waverly. I had emailed her 4th grade teacher to see if I could bring in some treats to celebrate. She responded let's have a party for her first thing in the morning instead. Both 4th grade classes attended, as well as both ID classes. Matt and I drove the kids to school, along with a cake to feed 90 and some fresh fruit. We set up in the library. Moments later about 60 kids came rushing into the library, all wearing purple (Wavey's favorite color and the color for MPS). They each made her a card and greeted her with a "happy birthday". We all sang, to which Waverly was all smiles and giggles, and enjoyed some cake together.

There is something very special about her classmates. They have known her for 5 years. They remember when she could talk and sing. They remember when she would run around the school and each every piece of food within her reach. They ask questions. Waverly has made a tremendous impact on them. She teaches them patience and acceptance of people who are different. The kids act as her protector and friend. They help push her wheelchair or bring her walker outside for recess. They read to her and play peek-a-boo to make her smile.

One of the ways I find beauty in the midst of the tragedy that is Sanfilippo is in the impact Waverly & Oliver have on others. It is evident that these kids are going to go on to middle school and beyond encountering other kids who have special needs and they are going to remember what they learned from Wavey. They are going to show kindness and acceptance. They are going to offer a helping hand. It is truly a thing of beauty to watch. And what a testament to the benefits of inclusion for ALL involved.

I wish I could share photos, but I don't want to post anything without permission from the parents. It was a magical morning and I am grateful to VES for continuing to an incredible place for my children.

Introduction - For Those New to Our Story

***I thought I would update the introduction to our family. Here is a brief synopsis of our family and our journey.***

Waverly just turned 10 years old and Oliver is almost 7.  They were diagnosed 5 years ago with MPS IIIA, also known as Sanfilippo Syndrome.  (I have a detailed explanation of the disease on the right side of the blog.)

Wavey is a beautiful little girl.  She has always been kind and gentle.  She was an easy baby.  She was big for her age and lagged behind her peers in gross motor skills.  Otherwise, she met all of the usual milestones.  Around age 2, I started to grow concerned that she seemed to have slowed down in her development.  Our pediatrician was not concerned, since Wavey was incredibly social and happy.  

When Waverly was 3 years old, her little brother Oliver was born.  He ended up spending 2 weeks in the NICU with heart and lung issues.  We thought for a few days that he wasn't going to make it.  During his time in the hospital, he failed his newborn hearing screening test.  We discovered he had a severe hearing loss at 6 weeks of age.  Our audiologist suspected Wavey had the same hearing loss, after meeting her.  We thought that the hearing loss was the answer to our question of why she seemed behind the other kids her age.

The kids were fitted with hearing aids and the family moved to London for my husband's work.  Waverly was enrolled in a preschool program run by speech therapists and OTs.  Everything felt perfect.

After a few months, Wavey's speech therapist met with me to discuss her concerns.  Wavey's behavior was not typical for a child with a hearing loss.  She was concerned there may be something additional going on, so she referred us to a Pediatric Neurologist and a geneticist.  We had multiple appointments, blood tests, urine tests and an MRI done in London.  The doctor suspected there was an underlying issue, but no diagnosis was made.

I ended up getting a report back on some blood work from the lab.  One item was flagged for follow-up. The neurologist was not concerned, but when I googled it I became VERY nervous.  That particular item was associated with another serious disease.  I grew tired of waiting for the doctors to figure out the problem, so I ended up flying back to the US with the kids.  

We were able to get Waverly in to see the chief neurologist at CHoP.  The doctors there were incredible!  Waverly underwent a battery of tests.  One month later, after Matt had flown back for the appointment, we sat in a hospital room along with 4 doctors.  I knew that was a bad sign.  They suspected Waverly had Sanfilippo and they received the confirmation test results that morning.

That meeting is a bit of a blur.  I remember them telling me she had MPS III.  They began to explain what that meant and I interrupted.  I wanted to know if she was going to die.  He told me that yes, children with Sanfilippo die tragically young.  I then asked what treatments were available.  He told me there was nothing we could do.  We talked about Oliver and the potential that he had it as well.  In my heart, I knew he was going to test positive.

Our life changed dramatically that day.  I remember staring at Waverly in the back seat of the car during our hour long drive back to my mom's home.  She was completely unaware of her fate.  I wept.  She sang "If You're Happy and You Know It".

I appreciate the little things now.  That is a recurring theme here.  Each smile and laugh mean so much more to us.  We try to create memories with them whenever possible.  We love them for who they are....while mourning who we wish they could be.  They bring incredible joy to us and to all who meet them.  They have impacted the world more in their short lives than most people do in a lifetime.

Waverly no longer speaks.  She is cannot walk safely without adult support and uses a wheelchair.  She has had a feeding tube for a little over a year, after a swallow test revealed she was a risk for aspiration.  She can no longer scribble with a crayon, put together a puzzle or stack blocks.  Her fine motor skills are deteriorating.  However, she is happy.  She loves to look right in your eyes and smile.  She loves to giggle and be tickled.  She loves to watch Cinderella and Winnie the Pooh.  She loves to hear us sing her favorite songs.  She will sit and listen to her favorite stories, like "Sammy the Seal" and "Click. Clack. Moo".

Oliver has never really said a word.  He loves to take walks and explore playgrounds - slides and swings are his favorite.  He loves to watch Mickey Mouse Clubhouse.  He is a very active TV watcher - running, jumping and clapping throughout the show.  He enjoys the water - bathtubs, sprinklers, pools - he doesn't care.  He likes paging through his books, but refuses to sit still long enough to be read to.  He willingly climbs into his bed each night for bed, with his duckie and Mickey Mouse football in hand.  He is my cuddle bug.  Ice cream cones are the way to his heart.

We are not sure how much time we have with them.  The life expectancy for children with Sanfilippo type A varies.  The doctors have told us between 10-18 years is typical.  I am not convinced that there is enough time for the current research to save Waverly & Oliver.  However, I would do anything to prevent another family from going through this heartache.

Happy Birthday, Waverly!!!!!!!!!!

We celebrated Waverly on Friday. Our wonderful girl turned 10 years old. Double Digits. As her birthday drew near I began to feel all sorts of emotions. We didn't have plans for a big party, so I felt guilty. I distinctly remember when she was diagnosed with Sanfilippo Syndrome that one of the pamphlets we were handed gave a lifespan estimate of 10-18 years. A bittersweet milestone. So I made a simple request on Facebook. I asked my friends who were interested to send Waverly a birthday card. Just a little way to celebrate her since so many who love her are scattered around the globe. Unbeknownst to me, friends were sharing my request with their friends who shared with their friends and before we knew it this happened:

Hundreds and hundreds of cards and packages. People knew she loves Cinderella, Minnie Mouse and Winnie the Pooh, so they had their kids draw pictures, color pages and apply stickers. They found cards that played music and lit up. It blew me away!!! We spent Friday night opening cards with her. Matt and I loved reading the letters from kids wishing her a happy birthday. Wavey loved the cards with familiar characters and seemed especially draw to the cards that lit up. We still have yet to open all of them (hopefully we can finish today.)

And in another brilliant surprise, we came home from school on Friday to find this:

Some friends of friends who live in our neighborhood came over to the house and decorated the driveway. It was amazing!!! I actually burst into tears as we pulled in. We haven't met very many people in our area since the kids attend school in the next town over. I love that this family came up with such a creative way to show their love and support.

Wavey was all smiles and giggles as we walked all over the drawing and wishes. She plopped right down and I was able to get a few pictures - of course I couldn't get a smile from her once I had my camera out.

THANKS to all of you who thought of Waverly, mailed a card, sent a message, decorated our driveway or called. You made Waverly's birthday one we will never ever forget.

Thursday, November 14, 2013

Handsome Oliver

Oliver has been doing so well. Lots of smiles and giggles, excellent eye contact and ever our outdoor explorer. I thought he looked so handsome in his little toggle coat yesterday.

Happy Birthday, Matt!!!

Happy Birthday to the best Daddy and husband in the entire world. Waverly, Oliver & I are so fortunate to have him in our lives.

Monday, November 11, 2013

Such a Trooper

Waverly has had a very busy few weeks. We saw her PMR doctor a few weeks ago. There is some definite changes to her right hip and she recommended we return to the orthopedist to see what he thinks. We met with him last week. He is  really good doctor and takes the time to have a real conversation with me at each visit. Wavey's knees are continuing to bow inward, causing her hips to turn out more as she grows. He took X-rays and it has gotten worse in the past year. He had recommended we do a fairly simple surgery inserting a metal growth plate on the outside of her knee bones. The thought it as she grows, the plate will pull the leg out and into a proper position. The last time he mentioned the surgery was just a month after her got her g-tube. We were simply not ready to put her through another surgery. Now looking back, I wish we would have given it a try. She is a year old and farther along in the disease. Maybe she could be in less pain and be walking with more stability. So many what ifs...
She sure was cute in her gown as we waited for X-Rays.

Fall Fun!!

It is my most favorite time of the year. Cold enough to layer, yet warm enough to be outside sipping hot coffee whilst enjoying the beautiful autumn leaves. We have been busy enjoying all that the season has to offer. From apple picking to pumpkin carving, walks in the woods to walks along the Potomac. Here are a few pictures from the past few weeks.

One of our family rules is always let the kids ride a carousel 

 Oliver can still hold on and swing

 Walking in the woods in our neighborhood

Smiley Waverly with her Grandpa 

Walking the pier at the National Harbor

Friday, November 1, 2013