Meet the McNeil Family

Meet the McNeil Family

Wednesday, December 31, 2008

Goodbye 2008

I thought that I would be happier to say goodbye to 2008.  This was such a life altering year for us.  We began this year so thankful for the experience of living in London.  Matt really enjoyed his job and we made a home for ourselves there.  Then in January we got the scary test result for Waverly, made plans to bring her back to the US for tests, and then the horrible news that both Waverly & Oliver had MPS III.  We had the decide on the stem cell transplant.  And then make plans to move back to the US.  New state, apartment, job, school, doctors, therapists, etc.  2008 was not kind to us....

But it was a year full of incredible memories.  I cherish my time with the kids unlike ever before.  I appreciate the small things.  I am a very blessed mom to have had a full year with my 2 amazing children.

I am heading into 2009 with a lot of apprehension.  I have no idea what the year holds for us, but I know that we are going to take each day as it comes and thank God for another day.  Another day with the most incredible kids.  Another day to be a mommy.  Another day to hope for a miracle.

I hope you all have a wonderful New Year's Eve where ever you are.

Tuesday, December 30, 2008

Happy Birthday Oliver

Today is Oliver's 2nd birthday. I cannot believe my little boy turned 2 years old. We spent most of the day in Lancaster PA enjoying Amish country. We took the kids on a horse & buggy ride. They both really enjoyed it. We are going to have a little birthday party for him on Thursday. Matt is in VA working, while I spent some extra time in PA with my family. We didn't want Matt to miss the party, so Oli's celebration will last a few more days.
I had a mini emotional breakdown on Sunday night. The sadness was too much for me and I broke down in tears. My mom and sister came in beside me and held me as I wept. No words needed to be spoken. They understand my pain. It was actually quite cleansing to have a nice cry.

Sunday, December 28, 2008

Christmas Recap

I hope you all had a wonderful Christmas. We spent Christmas day in VA. We woke up and opened presents. Oliver was thrilled with the act of tearing open the wrapping paper to see what was inside. He was very excited to get a Thomas the train set and a Handy Manny tool set - I think those were his favorites. Waverly was excited to see a "Jo-Jo's Circus" t-shirt, a bunch of new DVDs and some new clothes. Waverly doesn't really get the concept of opening gifts anymore, which always makes birthdays and Christmas a little sad. Then we had a wonderful lunch, before packing up the car to drive up to PA.
We have been up at my parent's house for a few days. My sister and her family also came down. Waverly & Oliver both really enjoy their cousins and are having a lot of fun with them. Waverly tends to just wander around a lot...not too much interaction or playing. She likes to watch the other kids though and is always up for a movie. Oliver will be 2 in just a few short days and he is into playing with everything. He is having a ball.
Oliver hasn't been sleeping well. I took him to the doctor this morning and he has a sinus infection. We also called our ENT and it looks like Oliver will be getting his adenoids and tonsils out soon. He has really started snoring the past few weeks and it is effecting his breathing at night. It seems one of the kids is always sick with something.
I was expecting Christmas to be more emotional for me this year. I think it never really felt like Christmas - it came so fast. I think the Disney World trip was a nice distraction. While still a very sad holiday for us, I think we were able to enjoy the moments we have and celebrate our 2 wonderful kids.

Friday, December 26, 2008

Article

The Piqua Daily Call had an article in the paper today about the kids and "A Hundred for a Home". You can read about it here. Matt grew up in Piqua Ohio and actually went to high school with the reporter who covered our story. We are so excited about this.

Wednesday, December 24, 2008

Christmas in DC

We took the kids down to the National Mall late this afternoon.  Matt got out of work early and the kids had some energy to burn off.  Here are a few of the photos I took.

Oliver walking along the path.  He loves to pick up the pebbles.
Waverly and I - I love her smile.

Matt holding tight to the kids to try to get a photo. 

Oliver walking to the Washington Monument.

Christmas Eve

I know that most of you are traveling to be with family & friends or settling into the holidays at home. I just wanted to wish all of you a very Merry Christmas.  You have all been a gift to me.  This blog has been my therapy.  It is much easier for me to express my feelings through this venue when the moment strikes.  I so appreciate all of you coming back day after day to see what new adventures Waverly & Oliver are providing.

This is going to be a difficult Christmas for us.  This is our first one since the kids have been diagnosed.  Waverly isn't into opening presents anymore and buying for her is near impossible.  I think Oliver is going to love it!  We will have a nice Christmas lunch and then pack up the car for the drive to PA.  I thought filling our evening with a drive and family will be distracting for me.  Christmas night has always been an emotional time for me and I think tomorrow it will be even more so.

Merry Christmas!!

Tuesday, December 23, 2008

Music to my Soul

Waverly has started saying her name again.  We thought we had lost that word forever and then the past few days she has been saying "Wavey" and "Waverly" a few times a day.  Such a beautiful sound.  I have to get it on tape!!

2 Days And Counting

I cannot believe that Christmas is only 2 days away.  I think that I have finally completed all of our shopping and I just need to wrap a few last minute gifts.  We are staying in VA for Christmas and then heading up to PA to be with my family.  I hope the preparations for dinners, guests, presents, and travels are all going well.

I received a really neat gift from the MPS Society today.  It is a binder they created to inform families all about Sanfilippo.  It is incredibly informative.  It also has organizational areas to keep track of doctor visits, procedures, meds, etc.  I am so thankful that this organization exists.  And I am grateful to those of you who have made donations in Waverly & Oliver's honor.  Matt and I hope to have a life long relationship with the MPS Society, working to raise money and to be a resource for other families effected by MPS.

I also just received a call that we are moving onto the next step in receiving our EDCD waiver.  This will assist us with respite care and secondary insurance.  I am so happy to live in a state with this program.  Hopefully we will be granted the waiver for both kids within the next few months.


Monday, December 22, 2008

With Gratitude

I cannot possibly express our gratitude for those of you who are foregoing Christmas gifts for yourself or family, and instead donating to "A Hundred for a Home".  It is absolutely incredible!  We have received phone calls, e-mails and cards expressing your love for our family and a desire to help.  What a portrait of the Christmas spirit.  From the bottom of our hearts, thank you.

Saturday, December 20, 2008

Bookworm

I have spent much of the past few days lamenting the fact that Christmas is approaching.  Last night Matt and I went to the mall to do the last of our Christmas shopping.  (My mom stayed with the kids to give us a night out.)  Even though we were shopping for each other, I just started crying in the middle of Barnes & Noble.  I always end up in the children's book section.  Waverly used to LOVE being read to and most of her toys were books.  I was so proud to have such a little bookworm on my hands.  I had dreams of reading "Anne of Green Gables" and "Little Women" to her at night.  As I stood there, I was again reminded of a dream lost.

In lighter news, Matt and I are officially Virginians.  We spent most of the morning at the DMV getting new driver's licenses and plates.  We were actually able to get handicapped plates, which is going to be a huge help getting the kids in & out of the car and in & out of places.

Friday, December 19, 2008

Success

Oliver had tubes put in his ears around 8:30 this morning and we were leaving the hospital at 9:30.  Such a quick and easy procedure.  His doctor is amazing!  Oliver is doing fine...if a bit grumpy.  And Grandma is enjoying the extra snuggling time.

I was able to run some errands this afternoon sans kids.  What a treat!!

Thursday, December 18, 2008

Surgery

Oliver's ear surgery is scheduled for 8:00am tomorrow.  Kids with Sanfilippo are more likely to have issues with anesthesia, so I would appreciate your prayers.

Arm Restraints

I went to Waverly's school today to observe the OT using the arm restraints with her.  It was such a cute visit.  Her class was on the playground when I arrived and Waverly was covered in mud.  She was playing a chasing game with 2 boys in her class.  She was very excited to see me and I walked back with everyone to her classroom.  One of the little boys is a great helper for Waverly and he told me all about how he likes to help her.  It was adorable!!  Then the OT came into the room and they did a painting activity.  They were using stampers & paint to make wrapping paper for a Christmas gift for Matt & I.  (Nice.)  They put on the restraints, which resemble a soft arm cast with velcro.  She didn't protest in the slightest.  Then the OT helped her paint, using hand-over-hand.  While Waverly didn't actually use the stamps herself, she did get her hand covered in paint and didn't get upset.  Plus, she didn't automatically put the stampers in her mouth.

I am going to sign the consent form so they can use the restraints for a certain amount of time each day.  It will keep her safe and allow her to participate in some activities.  I was quite pleased with how everything turned out.

My Mom arrived this afternoon.  She is here to help with Waverly tomorrow while I take Oliver to the hospital for his ear tubes surgery.  It is so nice to have another set of hands and the kids LOVE having her around.  I will let you all know how the surgery went tomorrow.

Wednesday, December 17, 2008

They Made The Cover!

Waverly & Oliver made the cover of the MPS Society's most recent magazine.  I was so excited!!  This is the photo we took while riding a surrey in VA Beach.  They look so adorable.  I am thrilled that supporters of the MPS Society will see them and fall in love.

Tired

I am so glad you have enjoyed the photos and highlights of our trip.  We had such a wonderful time.  I think the post-vacation blues are settling in.  It is always so difficult to get back into the routine after time off.

Tomorrow afternoon I am going to observe Waverly at school.  The OT is coming in to do an activity and she is going to put the arm restraints on Waverly.  I want to see how Wavey responds and if she is more apt to participate in an art project if she is unable to put the items in her mouth.  Our specialist was not opposed to the idea and thought it could actually be beneficial.  We shall see.

On Friday Oliver is getting tubes in his ears.  Hopefully this will stop the monthly ear infections.  They did wonders for Wavey when she was his age.  Even though it is the simplest of procedures, I still hate to see my little boy put under.

Tuesday, December 16, 2008

Highlights

We had such a wonderful time at Disney World.  We began planning for the trip in late spring, after the kids were both diagnosed and we decided to not go through with the transplant.  I can't believe it is over already.

I think the trip was bittersweet in some ways.  We were surrounded by families and children.  It always reveals just how much we miss out on because of Sanfilippo...just how different our experience was compared to others.

Yet we made some incredible memories.  Waverly thrived with all of the sensory stimulation.  She was saying some new words, smiling and laughing.  Many times she just sat content as a parade went by or a show went on...but she was enjoying herself.  Oliver loved every moment.  Everything was an adventure for him.

Some highlights:

*Mickey Mouse dancing with Waverly at Chef Mickey's
*Waverly running up to Pluto
*Riding Big Thunder Mountain Railroad with Wavey - she giggled the entire ride
*Oliver clapping for the show in front of the castle
*Riding Dumbo with the kids
*Oliver's smile on the carousel
*Waverly saying "drive, drive!" while driving the cars
*Oliver wearing his Mickey Mouse ears
*Oli signing "eat" every 5 minutes (he loved the treats)
*Meeting the Pooh characters
*The kids enjoying the bubbles at the Playhouse Disney show
*Christmas party on Main Street

Monday, December 15, 2008

Disney Photos

Oliver smiling

Waverly enjoying her stroller (Thanks London friends!!)

Wavey on the carousel

Oliver (not) enjoying a sombrero

Riding the tea cups (Oliver is signing to eat)

Oliver in his fancy ears

Waverly enjoying lunch

Oliver and his Mickey light sabre

His loves this toy

Waverly dancing with Mickey Mouse

Waverly and Grandma (my mom)

Wavey looking beautiful in her pink specs

Oliver and his first pair of ears

Oli eating ice cream...again

Arriving at the Magic Kingdom

You Tube Video

My friend, Kamarah, put together a video for You Tube for Waverly & Oliver and "A Hundred for a Home".  Please check it out HERE.  It is absolutely beautiful.

We're Back

We are back from a wonderful vacation to Disney World.  I will post photos and details tomorrow.  It is late and I am exhausted.  We had such a great time.

Saturday, December 6, 2008

Adios

We are off to the most magical place on earth.  I cannot wait to share our trip with you.  The kids are going to be so excited when we arrive.

Friday, December 5, 2008

Count Down

The count down is on and tomorrow we will be in Florida.  I have been busy packing and organizing carry-ons for most of the day.  We are going to have such a wonderful time!  As I have said many times before, our kids love all things Disney.  Mickey Mouse Clubhouse and My Friends Tigger & Pooh are staples, as are Cinderella and Dumbo.  We took Wavey to Disney World when she was 1.5, to celebrate Matt's graduation from law school.  It remains one of our favorite memories with her.  Last year, we took both kids to Disneyland Paris for their birthdays.  We had a ball.  Waverly loved the Winnie the Pooh show and shouted "Kanga" for about 30 minutes straight, to the amusement of everyone around us.

We are hoping for another wonderful week of memories to be made.  I am going to try to update the blog occasionally with photos.  So please check back.

Thursday, December 4, 2008

Exhausted

This morning we were all out the door early for an 8:00 am meeting with Waverly's school.  We are having her reevaluated by the school.  Currently, she is only classified as "hearing impaired".  That SO does not adequately explain our little girl.  This will help us get her in the best kindergarten placement.  The meeting went really well and I finally feel like Wavey's teacher gets it.  It is so nice.

Then we were all off to Children's Hospital for an appointment with our geneticist/metabolism doctor.  She is amazing!  I love having appointments with her, because she has actually seen another kid with Sanfilippo.  She was able to answer our questions (she really takes time with her patients) and she is going to try to get us in with the physical medicine doctor sooner.  The wait time is currently 4 months.  We also found out that Oliver has an ear infection.  Ugh!  In 2 weeks he is getting tubes...hopefully that will eliminate these.

After dropping Matt off at work and battling the national tree lighting traffic, I got Wavey to school.  Oli and I ran to Target.  We needed to get his prescription filled.  And we needed to get supplies for our trip to Disney World!!!

We are heading to Florida in just a few days and I can't wait!!  Right after we opted not to do the stem cell transplant for Oliver, we decided we needed to take a family vacation.  With the move back to the US and the loss of all of the European travel we were hoping to do, we thought the family deserved a trip.  We have been counting down since July!!  The kids are going to have a ball and we can't wait to watch their little faces light up.  It is going to be a wonderful memory maker.

Tuesday, December 2, 2008

Friendship

I have had the wonderful pleasure of getting to know some other moms who have children with Sanfilippo.  We can only talk online, but it has proven to be such a beneficial support system for me.  I feel understood.  Even though each child's progression in the disease is different, we all know that terrible pain of the diagnosis, the feelings of grief, and the unbearable sadness of watching your child be afflicted by such an awful disease.

Tonight we started getting out the Christmas decorations.  We have the tree up, with the lights on.  That is as far as I could get.  The holidays are going to be tough this year.  I can already feel the emotions welling up inside of me.

Monday, December 1, 2008

Chewlery

Chewlery is my new favorite thing.  Another mom who has a little boy with Sanfilippo recommended it after I blogged about Waverly's increasing need to chew.  I ordered a purple chewlery necklace for Waverly last week and it arrived just before our trip to PA.  It is just a purple plastic coiled necklace that is safe to chew on.  Wavey LOVES it!!  She keeps it on from the moment she wakes up until she climbs into bed.  It is more sanitary that her chewy tube, because she doesn't throw it on the floor.  And it is keeping her from chewing her clothes.

I just ordered a set of 7 - one in every color.  The thought of losing or breaking her new necklace was terrifying to Matt and I.  Now we will have a back-up supply and she can color coordinate to her outfit.  Nice.

It is the little things that make my life easier and chewlery is one of those little things.  God bless the inventor!