Meet the McNeil Family

Meet the McNeil Family

Tuesday, June 29, 2010

My World

I have had a difficult few days.  I am feeling down and in desperate need for change.  The isolation of Sanfilippo has been pronounced lately.  I feel so entrenched in this "special needs world", that I am losing my ability to function in normal society.  I am finding myself feeling quite awkward at times.

I often talk with my fellow MPS moms about parenting.  Many of the moms also have "typical/unaffected" children.  They have one foot in the real world and one in the special needs world.  It seems so difficult to me, because it is so unknown.  I do not know how to parent a normally developing child.  It is actually intimidating.  I don't know how they function trying to balance both worlds.

Recently though, I have been feeling so alone.  It isn't easy for people to come into my world.  It is intimidating for them.  It can be scary.  Their kids don't understand and they don't know how to explain it, so they avoid.  I understand.

I simply wish things were different.

Saturday, June 26, 2010

Back Home

We took our second road trip of the week and drove up to my parents' home in PA.  My favorite aunt was in town, so we went to spent some time with her.  The kids always love time with Grandma & Grandpa.  We had a wonderful time with family - swimming, playing, taking walks, and eating lots of Rita's on hot summer days.  I am so glad we live within easy driving distance of family.

Waverly had her last day of school on Thursday.  I was less emotional the day of.  She was so cute going off to kindergarten for the last day.  We are really going to miss her teacher.  We did get some information on the new teacher and she sounds wonderful, too.

Next week begins our actual summer vacation.  Our helper, Preti, is off to India for the summer.  So it will be just me and the kids.  Hopefully we will be able to get out to the pool and playground, without too many issues.  I think the double stroller will be my friend.

Wednesday, June 23, 2010

Regression

We took a road trip Monday to UNC to meet with one of our favorite doctors and her team.  We met her about a month after the kids were diagnosed.  She is such a fantastic source of information and advice.  We see her once a year and the time had come for another appointment.  The typical 4 hour drive turned into a horrible 8 hour drive.  There was a car accident that shut down the highway and Waverly kept getting nose bleeds, so we would have to pull over to stop the bleeding.  The next morning we went to the hospital for what is typically a full day of tests and evaluations.  The clinic moved into a new space, so there were a few components of the evaluation that we were unable to have completed.  The kids spent time with a doctor and nurse who specialize in the MPS disorders.  They were also tested by a developmental specialist. 

After a lunch break, we met back up with the team to discuss the results.  This was our third time and we prepared ourselves for the bad news.  We know the kids are going to test anywhere near their age, but it is still helpful to measure changes.  We were pleasantly surprised to hear that while Waverly decreased significantly in her expressive language since our last visit, she has stayed close to where she tested a year ago in other areas.  On average they say she is about at a 12 month old developmental age.  They reiterated the need to keep Waverly up and moving.  She must keep her strength up.  We were saddened to hear that Oliver regressed significantly in many areas.  We have seen him blossom this past year in school, but when we looked at it on paper he really is doing less than what he was a year ago.  We weren't expecting that news.  He may have just had an off day, but it was still sad news.  They were also  concerned with his physical strength.  He is very weak compared to other Sanfilippo kids at his age.  The kids' physical strength is closely related to their overall health - if they are mobile and active, they will live a longer, healthy life.  They were worried that he is weaker than Waverly and she is 3 years further along in the disease. 

There is always a period of sadness following these appointments.  They are incredibly helpful, but they are also stark reminders of just how much has been lost in one year.  It typically takes me a few days to come out of the fog.

To add to my sadness, Waverly's last day of kindergarten is tomorrow.  She has loved school this year and we have been so pleased with her class.  Her teachers are incredible.  The aides in the classroom are so loving and Wavey's 1:1 is wonderful.  Her teacher is transferring to another school next year and I actually started crying as I wrote her "thank you" card tonight.  We are really going to miss her!!  Waverly & Oliver have such a short time on this earth.  We do not take lightly the time they spend away from us and in a teacher's care.  Having teachers that keep our kids happy and safe is essential.  Wavey & Oli have been well loved and well taken care of.

Saturday, June 19, 2010

Friday, June 18, 2010

Schools Out For Summer

Today was Oliver's last day of preschool.  I cannot believe he has already completed an entire year of school.  My baby is growing up!  Preschool has been an incredible experience for him.  We have seen him learn new skills and become so much more social.  His teacher was fantastic!  We knew the moment we met her that she was the perfect choice for Oliver.  Her assistant was equally wonderful.  I wish Oliver could remain in their care next year, but it is time to move on to a classroom with older children.

It has been a more emotional experience that I anticipated.  I want time to stand still.  Even though I love watching him progress, the days seem to pass too quickly.  I try not to think about time as a morbid countdown, but when these milestones arrive I do think we are one year further along in the disease.  One more year of build-up in his brain.  One more year passing by without treatment.  One more year hoping for a cure.

Today we celebrate.  We celebrate Oliver's completion of his first year of preschool.  He did a superb job and we are so very proud of him.  He was very loved at school.  He won the hearts of all who worked with him.  He had a remarkable impact on those around him.  Congratulations, Oliver!!

Oliver walking to the school bus this morning with Daddy

Carrying his own backpack

Waiting for the bus to arrive

Getting on the school bus

Giving his afternoon driver a big hug goodbye  (We will miss her, too!)

Thursday, June 17, 2010

Photos From Oliver's Show

Here are some photos from Oliver's show.
Oliver getting ready with his IA Mae

Tapping his sticks to "Felis Navidad"

He loved all of the people in the audience.

Oliver loves music - he had so much fun!

Doing the "orange stretchy band" song

Clapping!

He kept moving closer and closer to the middle of the circle.  He ended up laying down in the middle of the circle on his belly near the end.

Wednesday, June 16, 2010

Oliver's Preschool Show

This morning Matt and I went to Oliver's school for his preschool show.  It was FANTASTIC!!  They performed 2 songs from their winter show (it was cancelled due to blizzards in December) and then a few of their favorites from music class.

We weren't sure what to expect from Oliver.  Matt hid behind the video camera and I hid behind my camera.  We were hoping he would participate more if he didn't notice we were there.  Thankfully there were a lot of attendees, so he didn't spot us until the final song.  I must say I cried during the entire first song.  It was overwhelming to see him actively taking part in a little show.  He was excited by the music and shaking his jingle bells.  It was incredible.

I will post photos and video tomorrow.  I am simply too tired to do it tonight.

Tuesday, June 15, 2010

Row

Wavey has had 2 fantastic days.  She is babbling and singing again like we haven't heard in months.  The only word we can actually make out is "row" as in "row, row, row your boat".  She comes running up to us, grabs our face, looks right in our eyes and "talks".  It is beautiful!  I only wish I knew what on earth she was trying to tell me.

Oliver is currently loving all things Tigger.  He is obsessed with "The Tigger Movie".  I think we have watched it every day for at least 2 weeks.  

Monday, June 14, 2010

Race For A Cure

We went to Wilmington Delaware this weekend to participate in a 5k run benefitting the MPS Society.  A family who also has 2 children with Sanfilippo organized the event.  3 of my friends from high school all came into town to participate as well.  The girls and I had a wonderful time on Saturday catching up and reminiscing.  (We stayed up way too late to be in any shape to run a 5k early the next morning.)  We walked it - with coffees in hand, as you can see in some of the photos.  My parents also came down for the race and had a great time seeing the kids for a few hours.

It was a wonderful event.  Over 300 people participated and it was a beautiful course through the riverfront of Wilmington.  (Great job Jen & Carl!)  There were a few other MPS families that also attended.  It is always so fantastic to be with other families who can understand.

Oliver is preparing for the race.

Spinning with Daddy - notice the thumbs up

Lovely Wavey

Pretty girl

Ready to ride

The girls ready to *walk*

Walking with Wavey

Matt taking Oliver across the finish line

Thursday, June 10, 2010

MPS Runs/Walks - Show Your Support!

There are a few walk/runs this summer to raise money for the MPS Society.  If you are interested in participating click HERE to see if there is a race in your area.

Summer Already?

The end of the school year is almost here and I have been busy with all of the end of the year busyness - book fairs, field days, parties, and thank you gifts for teachers and aides.  I cannot believe the kids will be out of school so soon.  This year has flown by.  Oliver completed his first year of preschool and Waverly is finished with kindergarten.  It is always difficult to remember that Wavey is actually 6.5 years old.  Matt and I feel as if we have perpetual toddlers.  Our house is still filled with board books, soft toys, Elmo, The Wiggles, diapers, and sippy cups.  We never move on to the next age appropriate thing.

Wavey has been sleeping well the past few nights.  We went through another short rough patch, but we are back on track at the moment.  (I am sure I just jinxed us and she will sleep 3 hours tonight.)  She has still be unsteady on her feet this week.  While I was hoping it was going to be a brief change, I am beginning to realize that we may simply be entering a new phase.  Her new wheelchair is on order.  We are just waiting for the call to have it delivered.  While we do not want to confine her to the chair by any means, it will be nice to have it when needed.  She tires out so much more quickly now.

Monday, June 7, 2010

Falling

It was a beautiful day - sunny and no humidity.  I decided to take Waverly for a little walk around the apartment complex.  She loves to hold hands and wander...I love it, too.  We walked the block to the pool and I showed her where we will spend our hot summer afternoons.  As we were walking back, she keep dropping to her knees.  This is typical.  Sometimes it is because she is tired of walking and other times she is simply telling me she wants to stop for a moment.  This time was different.  Each time I lifted her up and placed her back on her feet she would drop to her knees.  Over and over again.  Her little feet were turned in and I could tell she wanted to stand, she just physically couldn't.  I ended up having to pick her up and carry her back to the apartment.  (Not an easy feat carrying a 70 pound little girl.)  Once we got inside she walked over to the living room and sat for a bit looking at books.

I am not sure if this was simply a result of being too tired to continue walking or if this was a sign of things to come.  We know that she will eventually lose her ability to walk, I am just not ready for it yet.  Can one ever be ready for that though?

Sunday, June 6, 2010

Rainy Day

Waverly is a very tired little girl.  The past 2 weeks she has been sleeping beautifully.  We went through a rough the month before, but we thought we found a solution.  Unfortunately, she only slept 2.5 hours last night.  Instead of sleeping, she wanted to babble and giggle.  She spent most of today crying.  We have finally realized that these crying spells are the result of exhaustion.  She went to bed tonight with a fuss.  Now the question is how long will she sleep....


Oliver has been spending more and more time paging through his books.  I was able to get a few photos this afternoon, before he spotted me with the camera.  He still won't sit for a story, but he does enjoy looking at his favorite stories.

Saturday, June 5, 2010

Summertime

Summer has arrived.  Even though I am not a fan of the heat and humidity that define DC summers, I do enjoy pool time.  I was able to take Oliver to the pool this afternoon.  It was our first time there this season.  He loves being in the water.  He giggles the entire time, while kicking his feet and flapping his arms.  We had such a wonderful time together.  I cannot wait to take Waverly and see how she responds to the water.

Wednesday, June 2, 2010

Bucket

There are days when I can feel the sadness welling up inside of me.  The sorrow rests just under the surface and I know it is going to appear at the most inopportune time.  I am aware of the impending tears, because little things make me weepy - watching the kids sleep, reading the paper and being faced with all of the heartache in the world, Hallmark commercials (the Mother's Day one with the mom going through the cards her daughter has given her over the years still makes me cry).  I can feel the sadness tonight.  I know the tears will come and I will cry for so many things.  I find it cleansing - a chance to wash away some of the hurt.  The crying usually ends in smiles.  Memories of happy moments push aside the sadness and I relish in the joys of life.  

I remember Wavey and how she loved her pink bucket.  She used to say "but-et" (her way of saying bucket) over and over again as she wandered around with it hanging from her arm.  I cry because I wish I could hear her say that word again.  I long to hear her beautiful voice, that only lives on in videos and my memory.  Oh how I hate the changes that have occurred in my sweet baby girl.  But then I remember how precious that little voice was.  I am so grateful that I can hold onto that memory, replay it over and over again in my mind.  The smile comes...

Tuesday, June 1, 2010

Footie Jammies

I love putting the kids in footie jammies.  They look adorable in them.  My mom found these for Oliver - they have monsters all over them.  They are long enough, but we have to almost pour him into them.  They stretch over his big belly, but just barely.


The past week has been filled with heartache.  A friend's husband died in a car accident last week, leaving behind a young wife, 2 year old son and a baby on the way.  Another friend's son was in the hospital and it was very serious, thankfully he is back home.  Another friend's son is battling a brain tumor - his little body has been through so much.

I appreciate the perspective.  While my life isn't at all the way I had imagined it would be, I have today to be thankful for.  I have 2 fantastic kids who can smile and laugh - they bring me such joy.  I have an amazing husband who is my best friend and the best father to Waverly & Oliver.  I have no idea what tomorrow holds, but I know that I was able to play "ring around the rosie" with Wavey, read her "Elmer" books this afternoon, snuggle with Oliver while we watched "Cars" tonight.  All in all, a very good day.

Happy Memorial Day!

Oliver enjoying an ice cream cone on a *very* hot day.

Oliver also loved running through the sprinklers and playing in the paddling pool.

Waverly & Grandma enjoying a special moment.

Lovely!