Meet the McNeil Family

Meet the McNeil Family

Sunday, January 30, 2011

Disney Bound


We are off to Disney World today for Oliver's Make-a-Wish trip.  We cannot believe the day has finally arrived.  He is going to have an incredible time.  Matt and I are so excited to watch him enjoy all that Disney has to offer.  Waverly is going to have a fantastic time, too.  I will try to update the blog a few times while we are down there, if time permits.  However, I am looking forward to taking a break from "real life" and simply making memories with my family.

Please continue to vote for Team Sanfilippo in the Pepsi Refresh Project.  We are still in 1st place, but in the past many teams have come from behind to win the grant in the last days and even hours.  What a thrill to find out on 2/1 that we won.  That would be the perfect addition to an already special week.

Thanks for all of your support.

Saturday, January 29, 2011

Final Stretch

2 More Days of Voting to win a grant from the Pepsi Refresh Project to help fund gene therapy research.  We are still in 1st place, but we need all of you to keep voting and sharing the details with your friends.

Remember to vote EVERY day for the month of January.

1) Text 105582 to PEPSI (73774)

3) Vote via facebook by clicking this link and using the app.http://apps.facebook.com/pepsi

Aiden

We attended a memorial service for our friend Aiden this morning.  He was an amazing little boy, with a smile that would melt your heart.  Aiden and his sister Hannah were the first kids we ever met who had Sanfilippo.  We had the opportunity to get together with their family a few times over the years.  They are very special to Matt and I.

Aiden passed away earlier this month.  He left the earth much too soon.  Please keep his family in your prayers, as they mourn the loss of their son and brother.

Wednesday, January 26, 2011

Gene Therapy in Sanfilippo

Many people have asked us about gene therapy and the research that will be funded with the grant from the Pepsi Refresh Project.  Our friends at Ben's Dream posted this fantastic summary and I thought I would share it with all of you.

******************************************

The basic principle of gene therapy is to introduce a corrected gene to the body so it is taken up & begins to work properly. In the case of Sanfilippo Syndrome the gene that is involved in specific enzyme production for each type (A, B, etc.) is damaged. The corrected gene is put into a “vector”, or harmless virus, which is introduced to the body. This allows the gene to get into the cells where it can begin to function & produce the missing or broken enzyme. Unlike ERT (enzyme replacement) & drug therapy which requires lifelong dosing, gene therapy is done once – if successful the body takes over & reproduces the corrected gene.

Dr. Fu tested her gene therapy on Sanfilippo Type B mice using a single IV injection. Her research is so significant because the AAV9 vector she used passes through the Blood Brain Barrier & the corrected gene is widely dispersed throughout the entire body. Dr. Fu was not only able to extend the lifespan of the Type B mouse colony, but more importantly showed clearance of the storage caused by Sanfilippo & improvement of cognitive & motor functions.

Based on her results the next step is human clinical trials. It will take $1,200,000 to do the necessary toxicology, trial design, vector production & FDA submission to get there. Ben’s Dream – the Sanfilippo Research Foundation - has already granted Dr. Fu $200.000 to start the process. If won, the Pepsi Refresh grant will provide another $250,000 toward that goal – focused on vector testing & production.

Dr. Fu believes that she can apply the same technique to Type A. A Life for Elisa – the Sanfilippo Children’s Research Foundation - has granted $160,000 to replicate her Type B results on Type A. This money is outside of the dollars needed to bring Dr. Fu's original research to human clinical trial.

Even with the Pepsi Refresh grant we still need $750,000 to get Type B to clinical trial. If we are unsuccessful, it will not be possible to advance A or any other type beyond mouse research. We need to work together to bring Dr. Fu's original research to human clinical trial as soon as possible.

Monday, January 24, 2011

One Week Left

7 More Days of Voting to win a grant from the Pepsi Refresh Project to help fund gene therapy research.  We are still in 1st place, but we need all of you to keep voting.

Remember to vote EVERY day for the month of January.

1) Text 105582 to PEPSI (73774)
3) Vote via facebook by clicking this link and using the app.http://apps.facebook.com/pepsi

Rock-a-Bye Baby

Last night Waverly fell asleep snuggling up next to me on the couch.  She was incredibly interactive.  She wanted to look right into my eyes and listen to me talk to her.  I recited some favorite books and sang a few songs.  I told her over and over again that I thought she was beautiful and I love her so much.  She was chewing on her tube, when all of a sudden she stopped chewing and fell asleep.  We stayed that way for awhile.  I forgot how lovely it feels to have a child fall asleep on you.  The rhythmic breathing - warmth from their body - puddle of drool (yes, I even loved the drool last night!).

It was a moment.  A little thing.  And it was wonderful.

Friday, January 21, 2011

Voting Reminder


Remember to vote EVERY day for the month of January.

1) Text 105582 to PEPSI (73774)
2) Go to www.refresheverything.com (register, search Team Sanfilippo and vote).
3) Vote via facebook by clicking this link and using the app.http://apps.facebook.com/pepsi
Thank You!!

Swallow

We had Waverly's GI appointment yesterday morning.  It went really well.  It was basically informative.  Matt and I wanted to educate ourselves on a feeding tube - what the surgery is like, how it will effect her food intake, pain, etc.  The doctor walked us through the procedure and what life looks like post tube.  For as scary as it may sound, I actually feel a lot more comfortable about the option.  It is still going to be a huge emotional hurdle when the time comes to get the feeding tube, but at least we will know what we are getting into.

After discussing her most recent swallow study, going over the disease progression and her eating habits in the home/school, the doctor does think she is a candidate for a feeding tube.  Fortunately, we have time to wait.  Phew!!  She hasn't lost weight or had pneumonia.  Hopefully we can continue to manage the swallowing problems without intervention.  We will continue using the thickener in her liquids.  We will puree her foods and have her snack on dissolvable solids.

I actually left the appointment feeling quite positive.  I was able to leave holding on to the way things are for  a little while longer.

Wednesday, January 19, 2011

G/I

Tomorrow morning we are taking Waverly in to see her G/I specialist.  We haven't met with him since her most recent swallow study.  Even with the changes we have made to her diet (i.e. pureeing food and using Simply Thick), she is continuing to have difficulties eating.  Last week she started holding liquid in her mouth for a longer period of time and her tongue is getting in the way more often.

I know he will want to discuss a feeding tube.  I don't think we need to proceed yet, but I know that it is something we will eventually have to consider.  I wanted to have this meeting so I could become informed on what the surgery is like to place the tube and exactly what life will look like when it is time.  It is not going to be an easy appointment, but it is necessary.

Having a child lose the ability to feed herself and even swallow is exactly why I need all of you to VOTE. And then take the next step and ask your friends to join you.  We have to fund this research project, to get us closer to find an effective treatment and cure.

Monday, January 17, 2011

Thank You!!

We are halfway through the month and still in first place for the $250,000 grant from the Pepsi Refresh Project.  This money will help fund gene therapy research.  Voting continues through 11:59 pm on January 31st, so please keep voting EVERY DAY for the rest of the month.  Remember to share with your friends.  We have to keep up the momentum!

3 ways to vote each & every day!!
1) Text 105582 to PEPSI (73774)
2) Go to 
www.refresheverything.com (register, search Team Sanfilippo and vote).
3) Vote via facebook by clicking this link and using the app.
 http://apps.facebook.com/pepsirefresh/idea/view/id/99442d3c-30f0-102e-be05-0019b9b9e205

Matt and I feel incredibly supported by all of you.  We are so grateful for your love and encouragement.  Thank you for helping us get to 1st place.  Now, we need your help to keep us there.

Saturday, January 15, 2011

Isolation

One of the side effects of Sanfilippo is the feeling of isolation we sometimes have as a family.  Our kids aren't capable of doing age appropriate activities.  As other families evolve as their children age, we are perpetually in the baby and toddler stage.  We often say we feel like we are in the movie "Groundhog Day".  It is difficult to find sitters who are capable enough to care for and handle both Waverly & Oliver.  We spend a lot of time as a family watching favorite videos, reading favorite books and spending time outside.

The winters are rough.  Waverly's circulation is getting worse and it is very difficult keeping her warm.  Needless to say, we are counting down the days until spring arrives.  (And counting down the days until we head to Florida for Oliver's Make-a-Wish trip!!)

One thing the Pepsi Refresh Project has shown Matt and I is just how supported we truly are.  We are amazed daily by friends voting, sharing with the friends, commenting on the blog, and sending us messages.  We cannot believe the people who are joining forces with us.  Invested in winning this grant - and determined to play an active role in making that happen.  I keep seeing friends say "WE are in first place".  I love the use of the word "we" - it makes me feel like I am not standing alone.

Friday, January 14, 2011

Big Boy!!



We celebrated Oliver's birthday yesterday with his classmates.  I was fortunate enough to be able to bring a Cars cake in after lunch.  They sang "Happy Birthday" - which he loved.  Then shared a slice of cake around the table.  It was a wonderful moment of celebrating Oliver.

Thursday, January 13, 2011

You Tube Link

Here is the link to share the video with your family and friends.  I posted it on You Tube tonight.  http://www.youtube.com/watch?v=96mEHNH3AGY

Introduction to Sanfilippo

video

This is why we desperately need your vote.

3 ways to vote each & every day!!
1) Text 105582 to PEPSI (73774)
2) Go to 
www.refresheverything.com (register, search Team Sanfilippo and vote).
3) Vote via facebook by clicking this link and using the app. 
http://apps.facebook.com/pepsirefresh/idea/view/id/99442d3c-30f0-102e-be05-0019b9b9e205

Wednesday, January 12, 2011

Update on Waverly & Oliver

The past 10 days have flown by.  I have been spending so much of my time trying to get people to vote for Team Sanfilippo in the Pepsi Refresh Project.  We are still holding the #1 slot!  It is so worth it.  THANK YOU to all who are voting and sharing the links with your friends.  We have to continue getting more people to vote each day, in order to hold onto our lead.

The kids are both doing well.  Tomorrow we are having Oliver's birthday party at school.  The goodie bags are filled and the cake has been ordered.  We went with a "Cars" theme this year, since he has really been into that movie.  Hopefully I will have some party photos to share with you all tomorrow.

Waverly has been a little chatterbox lately.  She isn't saying any words, but babbling away as if she has a lot on her mind.  I know this phase isn't going to last long, so I am enjoying it while is lasts.  I love hearing her voice.

Wavey's swallowing issues are continuing to worsen.  The past few days she is having even more difficulty swallowing liquids.  She is holding her milk in her mouth for about 10 seconds before swallowing.  I have a call into our speech therapist, who specializes in swallowing issues.  I hope she will have some additional tips for us.  We are already thickening her liquids to a nectar like consistency.  We meet with her GI doctor next week.  One of the items on our discussion list is a feeding tube.  I am so not ready for that.

Tuesday, January 11, 2011

We Need Your Vote

Thanks to all of you who are voting and passing the word on to your friends.  Team Sanfilippo remains in 1st place for the $250,000 grant from the Pepsi Refresh Project.  (Voting instructions can be found below.) Remember that you can vote 3 different ways EVERY day for the entire month of January.  We have to finish the month in one of the top 2 spots in order to win the money.

I have listed numerous reasons why this is so important to me.  One is that Sanfilippo Syndrome is considered an "orphan disease".  That means the disease has not been adopted by the pharmaceutical industry because it provides little financial incentive for the private sector to make and market new medications to treat or prevent it.  There are simply too few children diagnosed each year for the pharmaceutical companies to invest the millions of dollars it takes to bring a drug or treatment to market.  So, the burden is left to families and their 501c3 charities to raise funds for research and clinical trials.  In layman's terms....drug companies won't make enough money selling the medicine, because there aren't enough kids diagnosed with Sanfilippo.

This is also very personal.  When Waverly & Oliver were diagnosed, we were told that there was nothing we could do to stop the progression of the disease.  Our doctors would treat the symptoms, but there was so treatment option.  It was a crushing feeling to be told your children are dying and there is nothing we can do about it.

I decided to focus my energy on making memories with the kids.  Taking advantage of what they were able to do and enjoying it.  Celebrating the little things along the way.  I try to be an advocate for children with special needs.  I try to use this blog to open the hearts and minds of other people to families who have children with special needs.  It can be a lonely and isolating existence.

I also want to work towards finding a cure for Sanfilippo.  The disease has done a lot of damage to Waverly & Oliver's brains.  I am not sure if there is time to develop a new treatment option and see it have a positive effect on my kids.  However, I hate the thought of parents sitting in a doctor's office and being told there is nothing to do.

Please help me by voting and sharing the cause with your friends.  This grant will allow us to take another step forward towards finding an effective treatment for this horrible disease.  I want Waverly & Oliver to be a part of finding a cure.  I want them to inspire people to act.

Monday, January 10, 2011

Sweet Aiden

In the midst of our rally to get votes to help fund Sanfilippo research, a little friend of ours, Aiden, lost his battle with the disease. He was only 2 and has left his siblings, parents and our Sanfilippo community with a gaping hole. A cure for this disease is so desperately needed.

Please keep Aiden and his family in your thoughts and prayers.

Vote for a cure.

Sunday, January 9, 2011

A Simple Plea

Since Waverly & Oliver were diagnosed, many of you have asked how you could help.  Voting for Team Sanfilippo in the Pepsi Refresh Project is an easy way to help our family.  Cast your votes each day in January in honor of Wavey & Oli.  Ask your friends to do the same.

This grant will allow us to get a bit closer to finding an effective treatment for children with Sanfilippo.

We are so grateful for your support.

Saturday, January 8, 2011

Voting Instructions

Please take 1 minute to vote for Team Sanfilippo (a 501c3 charity) in the Pepsi Refresh Project.  We are competing for a $250,000 grant to help us find a treatment option for Sanfilippo.  The top 2 finishers win the money.  We are currently in 2nd place, with 24 days of voting to go.

You can cast 3 votes for us in 1 minute.
1) Text 105582 to PEPSI (73774)
2)  Go to www.refresheverything.com (register, search Team Sanfilippo and vote).
3) Vote via facebook by clicking this link and using the app.  http://apps.facebook.com/pepsirefresh/idea/

Vote in honor of Waverly & Oliver.  Please.

Meet Waverly & Oliver

video

Here is a little video montage of Waverly & Oliver over the years.  Enjoy.

Friday, January 7, 2011

An Introduction

I've noticed an increase in blog traffic the past few days.  I know that friends of mine are sharing our blog with their friends when asking them to support Team Sanfilippo in the Pepsi Refresh Project.  I thought I would take a few moments to introduce the new readers to Waverly & Oliver.

Waverly is 7 years old and Oliver just turned 4.  They were diagnosed almost 3 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 beginning to have difficulty walking and uses a wheelchair.  Her ability to swallow is getting weaker, so we have had to adjust her diet to dissolvable solids and purees.  She will eventually need a feeding tube.  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 is able to run and kick a ball.  He loves playgrounds - slides and swings are his favorite.  He loves to watch Mickey Mouse Clubhouse and Cars.  He is a very active TV watcher - running, jumping and clapping throughout the show.  He loves the water - bathtubs, sprinklers, pools - he doesn't care.  He enjoys paging through his books, but refuses to sit still long enough to be read to.  He enjoys dot painting.  He loves sleep and will run to his bed for nap time each afternoon.  He is my cuddle bug.  He constantly runs up to me for hugs, always with a little tap on my back to let me know he really loves me.  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.


2nd Place

We are in 2nd place!!!  Please continue to vote EVERY day.  We have to remain in the top 2 spots in order to win the grant.  Voting lasts the entire month of January.  Please post on facebook, twitter, blogs, etc.

THANK YOU!!

Thursday, January 6, 2011

Please Vote

Please take 1 minute to vote for Team Sanfilippo (a 501c3 charity) in the Pepsi Refresh Project.  We are competing for a $250,000 grant to help us find a treatment option for Sanfilippo.  The top 2 finishers win the money.  We are currently in 3rd place, with 26 days of voting to go.  We have to move ahead and remain there.

You can cast 3 votes for us in 1 minute.

1) Text 105582 to PEPSI (73774)
2)  Go to www.refresheverything.com (register, search Team Sanfilippo and vote).
3) Vote via facebook by clicking this link and using the app.  http://apps.facebook.com/pepsirefresh/idea/

Vote in honor of Waverly & Oliver.  Please.

Wednesday, January 5, 2011

Success

Waverly has adjusted beautifully to her own bed!!  She had been sleeping in our bed for part of the night, or recently the entire night, for the past 3+ years.  We opted to have her sleep with us, in order for us all to sleep.  Thankfully, the comfort of her new bed and the inability for her to get out of it to come into our room, has worked wonders.  She isn't even waking in the middle of the night.  I think she realizes she can't leave, so she settles in and sleeps.  We even had to wake her the past 2 mornings for school.

Oliver is now our little waker.  He is at the age when sleep becomes much more difficult for children with Sanfilippo.  He is safe within the confines of his bed, but he is loud.  No crying and he isn't upset.  However, he babbles and shrieks throughout the night.  Wavey is able to sleep through it, Matt & I are learning to sleep through the noise.  The confidence we have that he is safe in his bed, allows us to get some much needed rest.

I feel like I am writing a testimonial for Sleep Safe beds, but they truly have changed our sleeping habits this week.  I am crossing my fingers that it continues.

Tuesday, January 4, 2011

Why Do We Need Your Vote?

Sanfilippo Syndrome is considered an "orphan disease".  That means the disease has not been adopted by the pharmaceutical industry because it provides little financial incentive for the private sector to make and market new medications to treat or prevent it.  There are simply too few children diagnosed each year for the pharmaceutical companies to invest the millions of dollars it takes to bring a drug or treatment to market.  So, the burden is left to families and their 501c3 charities to raise funds for research and clinical trials.


This $250,000 grant from Pepsi could get us closer to finding an effective treatment.  Please VOTE!!

Monday, January 3, 2011

We Need Your Help


Team Sanfilippo, a group of parents who are committed to finding a cure for this horrible disease, is in the running for a $250,000 grant from Pepsi.  For the entire month of January, people can vote for their favorite projects.  The top finishers win the money.  We want to use the money to fund a researcher at OSU, who is working on finding a treatment using Gene Therapy.

We need VOTES.

You can vote 3 ways - text, email and via facebook - each day.

I know it is a lot to ask, but if all of my facebook friends and blog readers vote, it gets us that much closer to a cure.  Do it in honor of Waverly & Oliver.  Ask your friends and family to participate.  Share the links on facebook or your blog.

Here are the details for voting:

1.      TEXT to contact “73774” (it stands for Pepsi) the message “105582  
2.      ONLINE  Vote at  http://www.refresheverything.com/curesanfilippo with every valid email account you have (work, personal, yahoo, hotmail, gmail, etc.)  After you vote, click the Facebook icon on lower right to share our voting link with everyone on your FB.  Remember, the sound of the Pepsi can opening verifies you are now logged in. To cast your vote, you must click the ‘vote for this idea’ button again.
3.      ONLINE VIA FACEBOOK  You can upload a Pepsi application that lets you and your friends vote from your FB page.  http://apps.facebook.com/pepsirefresh/idea  Or, click on a
       
http://www.refresheverything.com/curesanfilippo    voting link shared to your facebook. Or, click on LOGIN WITH FACEBOOK button on the top left of Pepsi login window.

Sunday, January 2, 2011

A Small Miracle

Waverly's Sleep Safe bed was delivered right before Christmas.  It should have been here months ago, but the durable medical goods company we used neglected to place the order after they received approval from insurance.  Thankfully, they remembered their mistake and squeezed us into their delivery schedule.  We had it all ready for over a week, but we waited until last night to give it a go.

Oliver and Waverly share a room, so we weren't sure how it would work with 2 kids who have sleep disorders together all night.  But Matt stayed with Wavey until she fell asleep.  He put up the sides of her bed, turned on the monitor and left.  We anticipated that she would wake up and make noise in an attempt to escape to our room.  However, she was quiet all night long.  Oliver work up around 4, but after some melatonin, he fell back to sleep for a few more hours.  They lasted all night long!!

We shall see how tonight goes.  Waverly has always enjoyed being in tight, comfy spaces.  We filled her new bed with warm blankets, pillows and her favorite stuffed animals.  I hope that the enclosed space brings her comfort and security.

So far, so good...


Saturday, January 1, 2011

A New Year

I have had a wonderful holiday break.  We had a lot of family adventures and yet we were still able to relax.  It was perfect.  Christmas didn't bring much sadness this year.  We were able to enjoy the kids as they are, not how we wish they could be.  They didn't enjoy unwrapping the gifts, but they certainly liked what was inside.  They each got a comfy beanbag chair.  They got a lot of books - new ones and copies of old favorites that have been destroyed.  We have a slew of new chewy toys to keep them happy.  The jumbo chewy necklaces (they look like old telephone cords), seem to be the biggest hit.

Oliver turned 4 years old a few days ago.  His birthday tends to get overshadowed by the holidays.  He has never had an actual party, just family around the dining room table.  I felt bad about that this year.  I am going to try to do something special for him and his classmates this next week.

Birthdays are always difficult.  I remember significant changes beginning with Waverly at age 4.  She started to become more hyper, chewing intensified and she had more difficulty with routine tasks.  They are very different kids, but I still anticipate that this is going to be a tough year for Oliver.  He has had a terrible week's sleep - getting up around 4 am.  Thankfully, I feel more prepared for these behaviors.  I can anticipate the changes and adjust my expectations.  It is still sad to see another year pass.