Meet the McNeil Family

Meet the McNeil Family

Monday, March 29, 2010

Road Trip

We are driving to Ohio tomorrow morning for a visit with Matt's family.  The bags are packed, DVDs are ready and the cooler is filled with snacks for along the way.  We will be stopping in Columbus for a night.  We lived there for 4 years, in fact Waverly was born there.  It will be nice to drive by our old house and visit some memorable places.  We are taking the kids to the zoo, which was a usual weekly family destination when Wavey was little.  Then we will go on to western Ohio to spend a few days with Grandpa & Grandma.  We are looking forward to a little vacation and we always love a good road trip. 

Sunday, March 28, 2010

Haircut

We took a quick trip up to PA to visit my family.  Matt had a rare 3 days of in a row, so it was the perfect time for a little road trip.  The kids had a great time visiting grandparents.  Matt and I were able to go see a movie.  We also had Oliver's hair cut.  I avoid his haircuts as long as possible.  Typically, he screams his head off and jerks all around.  We went to a special kids place and the stylist was fantastic.  Oliver didn't shed one tear.  I brought a small bag of gummi bears to keep him happy.  Here is a little glimpse of his new do.  I think he looks quite handsome.


Friday, March 26, 2010

Neighbors & Barium

We were able to have dinner with another Sanfilippo family last night.  They have 3 children, 2 of whom have MPS.  They will be moving up to our area next month.  It is going to be fun having another family around!!

Waverly had an Upper GI/SB this morning.  Her GI doctor wanted to rule out any problems that could have caused her stomach illness over the last few months.  The test didn't show anything major, although we have to wait for the official report from the doctor.  Wavey did a superb job and drank the barium liquid like a champ.  We are so proud of her.

Thursday, March 25, 2010

Kind Stranger

We took the kids to Chipotle last night for dinner.  They love the chips!  We go there every week - our usual.  We have a whole system in place.  I go in and order, Matt brings in the kids, Wavey sits in her stroller pulled up to the table - a well oiled machine.  There was a woman sitting at the table next to ours.  She was alone and I kept noticing her watching the kids.  Sometimes people look at the kids with confusion or disgust, other times they look at them with compassion and love.  The woman was definitely the latter.  We all left the restaurant at the same time.  I walked Oliver down the stairs and Matt took Wavey down the ramp.  The woman stopped him and handed him $40.  She said she thoroughly enjoying watching our family and loved the way we all interacted.  She didn't think we looked as if we were "in need", but she wanted to give us something to buy a special treat for each of the kids from her.  Matt was stunned and thanked her for her kindness.  It was an ordinary dinner, but she saw something special in Waverly & Oliver and that was her way of helping.  It was inspiring.  I want to follow her example.  It doesn't have to be money, it can just be a word of encouragement. 

In case you are wondering, we have the money set aside for special chocolate milk and ice cream treats for the kids.  We are taking 2 road trips in the next few weeks.  They kids will love having some sweet treats along the way.

Tuesday, March 23, 2010

Tuesdays


Tuesdays are incredibly busy.  Both of the kids have an hour of PT and OT each, which makes for a long day for all involved.  Poor Oliver isn't able to nap, because he goes straight from school to his therapy sessions.  Today when we got home, he was super exhausted.  He walked directly into his room, laid down on the floor and fell asleep in seconds.  It was adorable.  I think he still needs his nap.

Sunday, March 21, 2010

2nd Anniversary

March 20th came and went.  It wasn't until late last night that Matt asked if I was doing okay.  It was then I remembered yesterday marked the 2 year anniversary of Waverly's diagnosis.  I had mentioned it throughout the week, yet it totally slipped my mind.  I guess it was better that way.  Although I can't seem to get it off my mind tonight.

Wow - 2 years!  It feels like yesterday and another lifetime.  That day brought the answer we so desperately wanted.  After months of wondering what was happening to our beautiful little girl, we were given a reason for the changes.  That day also brought extreme heartbreak.  I will never ever forget the first question I asked of the experienced old doctor after he said "Waverly has Mucopolysaccharidoses III or Sanfilippo Syndrome".  Is she going to die?  Our young neurologist, who was playing with Wavey over in the corner, stifled her cry.  "Yes."  The tears came from deep within.  I remember the crying ebbed and flowed.  One moment I was on my knees weeping and the next I was asking questions, desperate for the "but there is a treatment option".  (It never came.)  The doctor gave us information about support groups, transplants, research, genetic counselors.  He told us to enjoy each moment we have with Waverly.  We asked about testing Oliver and got all of the necessary paperwork, but I knew in my heart that he had it as well.

Our lives changed drastically that day.  What a defining moment.  Each moment became more valuable.  I would stare at Waverly, trying to memorize each feature.  I took the camera everywhere so I could capture every event, big or small.  My soul wept every day.  I didn't think I was strong enough to handle the diagnosis.

But here I am 2 years out and life feels *normal*.  It is our normal, but we have settled into a routine and grown accustomed to our unique challenges.  I no longer cry every day.  Sanfilippo still creeps in, but it doesn't block the kids anymore.  I used to look at Waverly & Oliver and see the disease.  Now I see them - the most beautiful, precious children.  The signs of Sanfilippo are there - strong eye brows, long eye lashes, enormous amounts of hair, thick tongue.  Their bright eyes and glowing smile dominate.

The pain has matured (not sure if that is the right word, but it seems most appropriate.)  It is deep within. More private.  I still cry - often.  The pain hasn't lessened, but it doesn't rise to the surface as it used to.

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

I am listening to one of my favorite songs on repeat as I type.  It is by Over the Rhine, titled "Professional Daydreamer".  The first verse is beautiful and speaks to my soul.

"Part of me
You are a part of me I never want to lose
Hard for me
This is too hard
Maybe I can't get through
What will I miss the most
Pray that I'm haunted by your ghost"

Vote

My friend and fellow Sanfilippo mom is working to build a fully accessible playground in her area.  Will you please vote for "Little Hearts Big Smiles" HERE?  You can vote every 24 hours.  The contest ends on March 31st.  The top 3 vote getters will each receive $5000 to put towards their playground project.  Her project is currently in third place.  We want to ensure a win!!  Thanks so much.

Friday, March 19, 2010

Waverly Update

Waverly is finally back to herself.  She even went to school the past two days.  It is nice to have her happy and healthy again.  That was quite a recovery period!  She was very giggly and excited to be back among her friends at school.  She slept so well last night and I credit the exhaustion from a full school day.  It will be nice to settle back into our routine again. 

Wednesday, March 17, 2010

Thankful

I am still on a bit of a high from our time with Sasha and her family.  It made me wish that I lived closer to other friends who have children with Sanfilippo.  In such a short period of time, we can form a deep connection.  Experiencing the devastation of a child's terminal diagnosis is (thankfully) very rare.  Then add the uniqueness of Sanfilippo and the progressive nature of the disease.  When you meet another mother who understands, you form an instant friendship.  And then there are those special moms who in addition to sharing the tragedy of MPS, you also share interests.  They have become such a vital source of support, encouragement and friendship.

I have recently connected with a mom who had a son pass away from Sanfilippo about 20 years ago.  When her son was diagnosed there was no MPS Society, no support forums or doctors with an understanding of the disease.  She went to her local library and had the librarian look up the specifics of Sanfilippo.  That was all she had.

I am thankful for my fellow MPS moms.  I am thankful for the MPS Society and the incredible resource they have been to us.  I am thankful for my friends and family who have been there for me in such tangible ways over the past few years.  Thanks to all of you for reading the blog and following our story.  I cannot even explain how encouraging your comments have been to me.  The blog is therapy for me.  It is also a way of telling Waverly & Oliver's story to the world.  It is my hope that their story has a positive impact on others.  I hope you can remember to celebrate the little things in life.

Tuesday, March 16, 2010

Meet Sasha

Yesterday we had the wonderful opportunity to spend time with another Sanfilippo family.  I met Joanne on an MPS forum and we quickly connected.  Her daughter, Sasha, is 11 years old and was diagnosed at the same time as Waverly.  Sasha is such a beautiful girl with a captivating smile and so incredibly mobile.  It was nice to finally give her a great big hug.  Waverly cried the entire drive into DC, but once she was surrounded by everyone she calmed down and did beautifully.  We met them at the Air & Space museum and then headed over to the Natural History museum.

Waverly & Sasha


Wavey wishing that food was real.


Admiring herself in the mirror


Joanne & Sasha

Oliver loves the tvs embedded in the floor of the Natural History Museum

Monday, March 15, 2010

Family Photo


I don't have time to write much, but I did want to post this family photo.  It is rare for all 4 of us to appear in the same picture.

Saturday, March 13, 2010

Still

Yet another rough day for Waverly following another rough night for both of us.  She is still not drinking anything, although we did get her to eat some applesauce and jello tonight at dinner.  She is, of course, enjoying her popsicles.  She is very much *not* herself, but we are hopeful she will begin to feel better soon.  She has such a high pain tolerance, she must really not be feeling well.

Friday, March 12, 2010

Whimper

Waverly is still in a lot of pain.  She won't eat or drink anything, except for popsicles and a banana.  She is simply not herself.  Matt & I hate to hear her whimpering and crying - it is such a sad sound.  She had a terrible night's sleep and it looks like tonight is going to be the same.  This has been a much more difficult recovery than I was expecting.

Thursday, March 11, 2010

Hooray for Popsicles!!

We went through an entire box of popsicles today.  It was the only thing Waverly would eat.  We could tell when the Tylenol was wearing off, because she would begin to whimper and cry.  She was like clockwork.  I am confident that tomorrow will be a better day and she will continue to heal.  We will most likely stay in yet again, watching her favorite movies and working through popsicle box #2.  She is still super snuggley and I love it!







Wednesday, March 10, 2010

Recovery

Waverly slept well last night, even with a blood pressure check every thirty minutes.  She was discharged early this morning and started off quite happy.  We spent the morning snuggling on the couch, watching some of her favorite movies.  Matt took Oliver to the playground this afternoon to take advantage of this beautiful spring day.  While they were gone, Wavey started getting aggitated.  She *never* cries, but she started whimpering and looking at me with her big beautiful eyes.  She wasn't feeling well and she wanted me to make her feel better.  She didn't want to drink anything and she wouldn't eat any of the food I offered her - jello, applesauce, pudding, smoothie, yogurt, popcicles.  She ended up putting her head on my chest and cuddling for awhile.  I loved it and savored the moment.



Tuesday, March 9, 2010

Surgery Success

Waverly did beautifully today!!  Her doctor is amazing and took such good care of her.  She was actually able to get into the OR about 30 minutes early, which was a bonus.  The anastethiologist was fantastic and allowed us to go into the induction room while they gave Waverly the strawberry flavored gas to put her under.  The doctor wanted to scope her airway to be sure there weren't any issues - common problem with MPS.  Her airway was fine, so they moved along with the surgery.  They removed her enormous tonsils and adenoids in a short amount of time and then she was back in recovery.

After surgery, her doctor came to speak with us in the waiting room.  He was carrying a little jar.  He said they had to pull her upper front tooth, because it was loose and they didn't want it to accidentally get knocked out or cause any trouble if there was an emergency.  Her tooth was in the jar, along with five $1 bills.  He told me that the tooth fairy already visited.  :)  I actually got misty eyed as he gave me the tooth.  Wavey has lost 4 teeth already and each one has disappeared - either her swallowed them or we just couldn't find them.  I was so excited to actually have one to save.  The fact that some of the operating staff chipped in a few dollars to act as the tooth fairy was so heart warming.  We are so fortunate to have such compassionate doctors and nurses.

We went straight back and Wavey was very aggitated.  When she wakes up from anastethia she thrashes around and gets very upset.  Matt & I held her and talked to her.  Within about an hour she had fallen back to sleep and woke up a few hours later happy.  She was excited to drink juice and eat popcicles.  Dora was on and life was good.  She didn't fuss the rest of the day.  She fell asleep around 9:00 and hopefully she will have a fairly good night's rest.  As long as there are no problems tonight, she will be home in the morning.

Thanks for all of your messages, thoughts and prayers.  It is a routine surgery, but still difficult to see you child in pain.  I appreciate the support from all of you.

Monday, March 8, 2010

Waverly's Surgery

I just wanted to remind everyone that Waverly is having her tonsils and adenoids removed tomorrow morning.  Both Matt and I will be at the hospital with her.  Her surgeon is fantastic - one of my favorite doctors at Children's National.  He did Oliver's sugery last year.  I know she is in very capable hands.  Please say a prayer that all goes well and there aren't any complications.  I will update the blog tomorrow night with details.

Thanks for your support!!

Sanfilippo on Good Morning America

A family whose daughter has Sanfilippo was interviewed last week on Good Morning America.  What a fantastic opportunity to raise awareness.  Click HERE to watch the video.

Sunday, March 7, 2010

Spring Stroll

We had beautiful weather today!!  Spring is definitely around the corner.  Matt had to work, but we met up with him in the late afternoon for a walk on the National Mall.  It was so nice to be outside in the sunshine.  Everyone had the same idea, because there were loads of people enjoying the DC memorials and monuments.  I cannot fully express how thrilled we are to be able to be outside, after such a long harsh winter.

Oliver had a wonderful time gathering sticks.  He is getting a bit more difficult to direct and wants to wander a lot more than he used to.  He definitely was excited to be outside again.

Waverly is such a good girl.  She loved walking hand in hand with us along the paths.  She also loved the freedom of running around in the grassy areas.

Oliver is our little helper.  He loves to push the stroller, so here is a picture of him taking Wavey on a little ride.  Seconds later he drove her straight into a fence post.  It didn't phase either of them.

Thursday, March 4, 2010

To Nap or Not To Nap

Naps.  Waverly was 4 when she stopped napping.  She started waking up in the middle of the night and we thought it was because she was taking a nap during the day.  (Little did we know it was Sanfilippo and its crazy sleep disturbances.)  Oliver just turned 3, but the past few weeks he has been a terrible sleeper.  We will hear him through the monitor and he will be up for hours in the middle of the night talking, laughing, moving around.  He rarely cries.  He will then take a 2-3 hour nap in the afternoon.  On Monday he would not take a nap - very unlike him.  So we skipped the nap and that night he slept beautifully...from 7:15 pm thru 7:00 am.  Wow!  I didn't let him nap Tuesday and that night we had the same result.  Yesterday, Matt and I were at doctor appointments with Waverly all afternoon and Preti was home with Oliver.  He kept going to his crib, so she laid him down.  Of course he was up before 5:00 am this morning.

My question is, do I force him to stay awake in the afternoons so he can have a better night's sleep?  He seems young to give up a nap, but maybe he would be better off having 11 straight hours of sleep instead of interrupted segments.  Thoughts???

Wednesday, March 3, 2010

Can't Catch A Break

We had a day full of doctor appointments for Waverly.  It ended with a stop in cardiology.  The anesthesiologist wanted her to have an echocardiogram before her surgery next week.  Everything looked good, however they found a small hold in the wall between the upper chambers of her heart.  Due to its small size and the diagnosis of Sanfilippo, the cardiologist didn't think it required any type of intervention.  We simply need to monitor it.

We left with not much concern.  With everything else Wavey has to deal with, this seemed fairly small.  Poor girl can't catch a break.  It seems that every specialist we see finds something additional that needs monitoring.

Tuesday, March 2, 2010

Just As They Are

Yesterday morning Waverly had a doctor appointment in preparation for her surgery next week.  When I dropped her off at school, her class was in music.  I passed the classroom, heard the music and peeked in to see her friends singing and dancing.  It was a beautiful moment.  The kids were so free, so happy.  I would give anything to take Sanfilippo away from Waverly & Oliver.  But one of the positives found in a mammoth negative is that the simple things are so much more meaningful.  For a few moments I didn't wish things were different.  I just enjoyed them as they are.