Meet the McNeil Family

Meet the McNeil Family

Monday, December 30, 2013

New Traditions





Christmas has always been a difficult time for me. I tend to be overly emotional about it and focus on the *what ifs*. The past few years we have made a point to go on vacation over the holidays. It's a chance to escape and make memories. We weren't able to do that this year. So instead of trying to force traditional Christmas on the kids, we opted to do our own thing.

Matt had to work Christmas Eve day, so the kids met him downtown after work. We walked over to the White House to see the National Christmas Tree. It was freezing cold and so windy, so it was a quick walk. Then we went to Founding Farmers - one of our favorite restaurants - for dinner. We had a great table by the window in the corner. Perfect spot for Waverly and Oliver loved all of the food.

Christmas morning was casual. I made breakfast and had a few up wrapped toys and books in a basket for the kids to discover. No wrapping paper or bows, no Santa or stockings. I used to get so depressed that Waverly & Oliver didn't show excitement for those things. This year I adapted to them. And it was so much easier. Lesson learned.

Father & Son

I adore this picture of Oliver & Matt. My two favorite guys. Ollie was so excited for a Sweet Frog treat and Matt was more than happy to provide.

Our New Ride

We decided it was time and bought a wheelchair accessible van last month. It has finished being converted and now we are just waiting on delivery. Hopefully it will be here within the next 2 weeks. My back is achy from lifting Waverly in and out of our van. And especially lifting her wheelchair in and out of the back of the van. We just ordered her a new wheelchair which is much bulkier and weighs almost 100 lbs. It will be a wonderfully comfortable fit for Wavey, but I knew I could no longer lift it. 

It is a huge expense, but it was time. We needed a second car anyway. Our new van will accommodate 2 wheelchairs. For now, Oliver can sit in a seat with Waverly in her wheelchair beside him.

I am strangely excited for the new van's arrival. My back is already looking forward to limited lifting. I will take pictures of the kids inside once it *finally* arrives.




Sunday, December 29, 2013

Favorite Football


My sweet little boy is turning 7 years old tomorrow. I cannot believe how quickly time is flying by. My sister gave Oliver the football you see above. He got the same exact one in 2008, when we visited Disney World after the kids were diagnosed. He sleeps with it every night. A dear friend got us a spare a few years ago, but we lost it a few months ago. Thanks to eBay and a savvy sister, he now has  a back up once again. He was thrilled to see a favorite familiar toy under the wrapping paper. Most kids would be devastated to see a toy they already own, but my precious boy was all smiles. 

Wednesday, December 18, 2013

Sentimental

It is that time of year. Time to clean out the kids' rooms and donate toys. We don't buy many toys any more, so this is simply an act of going through old ones and deciding if we are able to part with them. Like most parents, letting go of the memories associated with specific items is the difficult part. For our family, there is an additional layer. Most of the toys were Oliver's - cars, fire trucks and race tracks. I am sure some little boys and girls will be very excited to receive these toys. Still it is another loss. Another phase of his childhood that has passed. Feeling very sentimental. And holding on to his Handy Manny tool set and Thomas the Tank Engines for a little while longer.

Friday, December 13, 2013

Doll in a Wheelchair

I went to the American Girl store with a friend last week. In the past, this store has filled me with anxiety and sorrow. I know that it sounds insane to equate Waverly's childhood with a doll, but the store represents a missed phase. It was a place I thought we would go together and let her pick out a doll. Last December I wandered in and decided to buy her a doll. I know she won't play with it, but I wanted to her to have one. I think it looks just like her. On my most recent trip, I spotted the wheelchair. I knew she had to have it. Just another addition to allow her doll to resemble Wavey even more. I have it displayed in Wavey's room and I think it looks fantastic.

Zoo Lights

We took the kids to the National Zoo for Zoo Lights last week. It is one of our favorite events during the holiday season in DC. I took this quick picture of Waverly before the sun went down and the lights came on. I think she looks adorable and definitely 10 years old. I think both kids enjoyed seeing the twinkly lights and riding the carousel. Making memories one moment at a time.



Thursday, December 12, 2013

Inclusion Week


The kids' school celebrated Inclusion Week a few weeks ago. As the Special Ed PTA rep, I thought this would be a really fun way to celebrate our students with disabilities. Well the teachers, staff and students took my idea and boy did they run with it. The 4th graders ferociously made loom bands in colors representing certain syndromes and conditions. Every student in the school was given a wrist band. In addition we asked them to wear a certain color each day. The kids made videos and signs explaining each condition. They were able to get a little science learning in when it came to genetics.

It was a fabulous week. The kids collected coins as "United For Change" to donate to Jill's House, since a few of the students from the school attend JH. It was amazing to see the kids and their parents be so supportive for this often overlooked group of kids. Instead they realized the importance of inclusion and how they can play a part every day.

Waverly & Winnie


I have been so busy the past few weeks I haven't had time to update the blog. Here is a quick picture of Waverly taken at my mom's house over Thanksgiving. I think she looks so beautiful holding onto her Winnie the Pooh stuffy.

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

Saturday, October 26, 2013

Impacting Friends

We will be celebrating National Inclusion Week at the kids' school in December. I am heading it up for the PTA. Thankfully, Waverly's 4th grade teacher and classmates are really excited about the event. They have decided to take the lead and help organize the week's activities. We will be honoring a different syndrome/disability each day of the week. The kids are also raising money for Jill's House. They will be collecting change all week. They are also making rainbow loom bracelets and selling lemonade & cocoa at neighborhood stands. It is truly incredible to see such young kids excited about including kids with different abilities in their school. And wanting to educate themselves on what those kids are facing each day. Waverly & Oliver are having such a positive impact on their schoolmates.

Wavey modeling on of the loom bracelets made for her 

Wavey's classmates wearing their MPS Awareness bracelets I bought for the class

The Kennedy Center


Waverly went to the Kennedy Center last week with her 4th grade class. She looked beautiful in her new dress and mary janes. She was able to sit in a box seat, almost on the stage itself, with a few of her school friends. Both the conductor and solo violist bowed to her and said hello. It was a very special day indeed.

Tuesday, October 15, 2013

Oliver, too

I forget that Oliver has Sanfilippo sometimes. I forget that he is going to travel the same route as his big sister. He is the baby. He has been our mobile one. He stays near me and holds my hand as we guide Waverly's wheelchair. We are beginning to see more changes in him. He looks *lost* more often - eyes turn a bit vacant, stars off into space, delayed responses. Sometimes he cries. I worry the changes in his brain & body frighten and frustrate him. He is beginning to have more difficulty with usual tasks. He can no longer pull himself up into the van on his own. He gets into position, but simply doesn't have the strength to push up on his leg and climb. He is also showing more stiffness, especially when sitting for short periods of time.

My poor little boy.


Saturday, October 12, 2013

It's Here!!


Guess what Oliver did last night?!?!

My little boy finally pooped out that pesky plastic piece. As we suspected, it was the cap to his apple sauce pouch and it looks like he spent a considerable time chewing it before swallowing it. He was so happy when it came out and ran the house in excitement.

I do want to go down to CNMC and have a little talking to with the surgeons we dealt with on Wednesday in the ER. As I told them, it had not passed. And his diarrhea was most definitely a result of the plastic.

Thursday, October 10, 2013

Future Gene Therapy Trial

I had the opportunity to sit in on a conference call about Sanfilippo Syndrome and a potential gene therapy trial in the US. This is very exciting news for our community. Families have been working for many long years to raise money to further research. This particular doctor and her staff are moving forward with a Natural History Study for patients with MPS III A & B. Hopefully within the next 1.5 - 2 years they will begin a small patient trial to test the safety and efficacy of the treatment. The mouse models are showing very positive results and we hope that translate to similar results in children. Unfortunately, it is too late for Waverly & Oliver. However they have done their part and will continue to do so, to further research. With their help, I am confident a treatment will one day be available for families.

30 Days

We had another visit to the ER yesterday. Oliver again and still related to this ingested piece of plastic from two weeks ago. He has been having a lot of GI issues and they have gotten progressively worse. After 14 hours and some tests, we were told to simply go home and wait. After 30 days post procedure, if the plastic piece still hasn't passed and/or he is still experiencing GI troubles then we will go back.

This is going to be a very long 30 days.

Wednesday, October 2, 2013

Oliver's ER Visit

Last Wednesday I received a call from the school that Oliver was coughing a lot and seemed out of sorts. No fever, but they wanted me to come pick him up. I brought him home and after a few hours my mom instinct kicked in and I knew something was wrong. As I watched him I was confident that he had something stuck in his esophagus. I called our pediatrician. She was on vacation, but the nurse brought us in to see another doctor. She referred us to the ER. I called out geneticist, just to make sure we really needed to go to the ER....at 6:30 pm in DC traffic. She definitely thought we needed to go and she called ahead to alert them that we were on our way.

I am so glad she called ahead. The ER at CNMC was so busy at that time of night. We were able to get checked in immediately and whisked back to a room. It took a few hours and a few x-rays, but they were confident something was stuck in there, but it didn't show up on the x-ray. The surgeon felt most comfortable admitting us and having the morning crew deal with scoping Oliver. He would have to be put under general anesthesia and the surgeon wanted a specific doctor to handle the surgery. I was so thankful that he was familiar enough with MPS to know there are additional risks to putting him under and wanting the best team to handle the procedure.

Matt was home with a sleeping Waverly. (We didn't expect this to turn into an ordeal.) A very kind friend graciously drove down to the hospital after picking up a bag for me and Oliver for our overnight stay. We settled into a room and finally fell asleep at 1:00 am.

What should have been a 30 minute procedure turned into 2 hours. I was alone and completely frightened. The surgeon was unable to get the item out and had to push it into Oliver's stomach. It was a large yellow piece of ridged plastic. They wanted to keep him another night to make sure it didn't cause any additional problems as it made its way out. Unfortunately Oliver had a very rough recovery and was unable to keep any food down. He had to undergo further tests to confirm the plastic wasn't lodged in his stomach. Finally on the third day he began to turn a corner and they discharged us late Friday night.

He has had a difficult time recovering, slowly getting both his appetite and energy back. But I am happy to report he is feeling much better.

We are fairly confident that he ingested the plastic lid to his applesauce pouch at school on Wednesday during lunch. We will have to wait to confirm our suspicions. The GI doctor said it could take up to a month!! Lucky us. We get to check every diaper for said object.


Friday, September 20, 2013

Waverly Needs Help


I am so incredibly excited about Waverly's school experience this year. She is so loved by her 4th grade peers. They show her kindness each day and I know she is making a life long impact on them in the process.

The kids made posters about Waverly and this was one a little girl made. I love the message of lending a helping hand. The kids have been helping Wavey get to the playground for recess, taking her walker outside for her, pushing her on the swing. I am overwhelmed by the level of acceptance she is shown.

The Swing Has Arrived

Finally!! After almost a year of work with the school and district, we were able to get a special needs swing installed on the kids' playground. All of the kids have been enjoying it. Waverly's classmates have been lining up to push her and she belly laughs as she swings. And Oliver loves to relax and chill in the swing during recess. These little things mean so much to our kids.

Saturday, September 7, 2013

15 Years


A few days ago Matt and I celebrated 15 years of wedded bliss. It has been a wild and wonderful ride. I truly cannot imagine getting through each day without him. He is my best friend. And instead of Sanfilippo pulling us apart, it has pushed us together. Happy Anniversary to the love of my life!!

Back to School


I am now the very proud mom to a 4th and 1st grade. (How did that happen?!?!) I was able to snap this picture on Tuesday - our first day of school. The kids are still at the same school. Oliver is actually in the same classroom with the same teacher as last year. He has 3 new classmates though. Waverly is in the other IDS classroom with a new teacher and 3 former classmates. Wavey's fantastic aide is with her again this year and for that we are incredibly grateful. I had some very kind emails from their mainstream teachers, welcoming them into their classrooms.

Wavey was all smiles for her first day. Oliver was a bit upset about returning to school, but he will soon settle in once again. He just takes a bit longer to remember the routine and get comfortable. I hope for another great year for all of us.

Bucket List - Check!

I think I am still processing our vacation. It was very different from anything else we have ever done. And it was different than what it was supposed to be. I loved reading the "Anne of Green Gables" books when I was little. And I especially loved the miniseries that ran on PBS a few decades ago. I always wanted a little girl to share my love for Anne. We would read the books, have a marathon night of popcorn and watching Anne. I always wanted to visit PEI with my little girl.

But life looks a lot different than I thought it would look.

Matt mentioned earlier this year that we had to make the trip to PEI happen this summer. Who knows how much more time we will have with Waverly or how easy it will be for her to travel. So we planned. We rented a cottage that was easily accessible, bought a guide book and started researching.

Visiting Green Gables and exploring the beautiful island as a family was fantastic. Many memories were made. It was a reminder that we cannot allow Sanfilippo to keep us from doing all of things we have dreamed of doing.

Friday, September 6, 2013

Prince Edward Island vacation

Our family went north for 2 weeks in August. We spent some time in Boston and the Maine coast, before heading up to PEI for a week. Here are a few photos of our fantastic trip.

The kids on the top of Cadillac Mountain

Acadia National Park

View from our cottage on PEI

Oliver exploring our beach

Waverly & Matt walking the beach

Cape Bear on PEI

Beautiful pic of Waverly while touring a winery

Oliver and Matt exploring the winery grounds

Water time

Visiting Green Gables

Waverly as AnnE

Matt & Wavey at Green Gables

Lucy Maud Montgomery's childhood home property

Walking in Montague

Smiley girl

Beautiful scenery

Beautiful scenery