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!

Sunday, November 30, 2008

Thanksgiving in PA

We have returned from a trip up to PA to visit family.  It was so nice to have time away with everyone.  We had a wonderful Thanksgiving.  My mom makes a FANTASTIC meal and we ate so well.  Plus, we got slices from our favorite pizzeria.  

We hadn't seen my sister and her family for a few months.  She has 4 beautiful kids who were so incredibly sweet with Waverly on this visit.  I think she has taken the time to explain why Waverly is different and they just accepted her.  I was so thankful to see such understanding and compassion from children.  Matt and I were moved to tears by their love for our sweet little kids.

Waverly had a tough few days.  I think the new environment and all of the people were a little too much for her.  But, after she adjusted she did well.  I think my entire family saw the changes that I have talked about.  Waverly was much less interactive with everyone and just seemed to be in her own little world.

Oliver loved being with his cousins.  His almost 4 year-old cousin loved to "pet" him and walk around the house guiding him around.  It was adorable.

I am so thankful for my family and the love they show to Waverly & Oliver.

Wednesday, November 26, 2008

Road Trip

We are about to leave for our drive up to PA to spend Thanksgiving with my family.  Waverly was so excited when I told her we were going to see Grandma & Grandpa.  I waited to tell her until after she got off the bus.  We are going to pick up Matt at the metro station and then away we go.  I am hoping the traffic won't be too bad.  I am so anxious to see everyone.

This has been a rough week for all of us.  There have been many more changes in Waverly.  I think we are entering another hyper stage.  It is difficult because she has so much energy, but very little coordination and her brain just doesn't understand.  She is climbing on everything and chewing like I have never seen her chew before.  Her hands are losing strength.  She can't hold onto a ziploc bag anymore (I always carry them with me filled with snacks for the car.  Now I have to pass them to her one at a time.)  She is falling more and more.  And then we look at Oliver and know that he is going to have to endure these same difficulties.

This is going to be an emotional Thanksgiving.  At times I don't feel like I have a whole lot to be thankful for.  Yet,  I cherish every day I have with the kids and I am thankful to spend this time with 2 incredible souls.

I hope you all have a very happy Thanksgiving.

Tuesday, November 25, 2008

Appointments

I just returned home from another doctor appointment for the kids.  We met with an orthopedic doctor.  Kids with MPS tend to have issues with their hips, so we wanted to have them x-rayed.  Waverly's feet are turning inward more and more, too.  They took hip x-rays and everything looked good for Oliver.  Waverly looks pretty good, but they did show some problems...nothing that requires any treatment though.  Our doctor has referred us to a doctor of physical medicine.  They will be able to assist us in the future with braces, walkers and wheelchairs.  It is a muscular issue, not a bone/joint problem.  Wavey may need to be fitted with braces for her legs to help her keep from tripping over her own feet.  Of course there is a waiting list of 4 months to get in to see someone.  But, we do have an appointment scheduled in March for both kids.

Waverly had a better day today.  She fell asleep within 15 minutes last night and slept all night long.  She was very excited to see one of her favorite books arrive in the mail, "Elmer and the Lost Teddy".  (She destroyed our copy and I found another copy on e-Bay.)  She actually sat and looked at the book for about 10 minutes - a record in attention span terms!!

We are really looking forward to heading to PA tomorrow to be with family for Thanksgiving.  It is always stressful putting Waverly in a different environment, but she loves being with her Grandpa & Grandma and all of her cousins.  I think it is going to be a wonderful holiday for all of us.

School Party

Wavey's teacher just sent me these photos from Wavey's birthday party last week.  I LOVE the first photo.  She looks so happy.  I brought Mickey Mouse Clubhouse cupcakes for her class.


Sunday, November 23, 2008

Life in London


Matt put together a bunch of our photos from our time in London and created a video.  I think he did such a great job capturing our time there.  Enjoy!

Pretty in Pink

Waverly in her new glasses.

Thank you for your comments and messages based on my last post.  There will be many more changed to come and I am so thankful to have your support.

We had a good weekend.  Yesterday we spent time at home, while Matt enjoyed OSU's big win.  Last night we drove up to MD to have dinner with a high school friend of mine.  She and her husband had our family over for a delicious dinner  It was so nice to meet her adorable 2 children.  I tend to get nervous when taking Waverly into a new environment.  I don't want her to get hurt or break anything.  It is so difficult to find anything to capture her attention, so Matt and I spend most of our time holding her hand and wandering the house.  Katie was so thoughtful and put away all things breakable or chokeable.  She also tivo'ed some Mickey Mouse Clubhouse episodes.  It was great.

This morning we woke up to a dead car battery.  Thank you AAA for coming to our rescue and supplying us with a new battery.  We ran some errands and went to our favorite little pizzeria, only for Matt to leave our box of leftover slices on the roof of the car, for the second time.

Waverly had an incredibly difficult time falling asleep tonight.  It took us 2 hours to get her to fall alseep.  Hopefully she will sleep in tomorrow, so she has a better day at school.

Friday, November 21, 2008

Change

Tonight was difficult.  I had a message from Waverly's teacher that she was throwing everything she could get her hands on and chewing all sorts of new objects.  She said Waverly was very challenging today.  Based on what I saw since she came home from school, I agree.  Wavey was trying to stand on the backs of sofas & chairs, knocking over lamps and tables, and she was throwing a lot of toys. 

 We also have noticed over the past few weeks she is tripping and falling much more often.  (Her teacher reported seeing the same change.)  And tonight, I was trying to engage her in some play.  When I gave her a tube that expands when she pulls it, she wasn't even able to grasp it tight enough to hold onto it.  It just kept slipping through her fingers. 

 That is how I feel right now.  Like Waverly is slipping through my fingers.  I am afraid that we have reached another point of decline and regression.  That is the awfulness of this syndrome.  The child plateaus along and then all of a sudden there is a loss of skills.  Just when you begin to be accustomed to the behaviors, things change.

I am praying for a miracle tonight.

Way to Help!

Macy's is running a promotion that if you bring in your child's stamped letter to Santa, they will donate $1 to the Make-a-Wish foundation, up to 1 million dollars!!  We are about to benefit from this incredible organization.  Here is a simple way we can all help fund wishes for kids all over the world.

Go to www.macys.com and click on Believe with mailbox in the top left corner for details.


Home Visit

I met with Waverly's teacher for a Home Visit today.  It went quite well.  Waverly has adjusted to her new surroundings and routine.  She isn't throwing herself on the floor anymore out of frustration and she is anticipating a lot more in the classroom.  She still doesn't like yoga, but she does enjoy the songs they sing during the exercise and is even beginning to flap her arms like a butterfly during one song.  She is still a food thief, so they have to keep their eye on her the entire time food is out.  She takes is from the table and from other kids' plates.  The other kids in her class really like her.  They miss her when she is not there, they say hello to her and interact with her, they know she puts things in her mouth and say "no, Waverly" when she attempts.  One little boy likes her so much that he constantly hugs her when she is sitting down during circle time.

We did discuss our reasoning for not wanting to do the restraints.  We asked if we could try them at home and see Waverly's reaction to wearing them.  If it does allow her to...even for 5 minutes...play appropriately with sensory items (rice, play dough, corn, etc), that may be worth trying.  We will try it in the home and see for ourselves.

In other news, Oliver is such a great little brother.  He always brings Waverly her chewy tube when he finds it around the apartment.  And he is beginning to find other things he knows she likes - Sammy the Seal book, Baa-Baa, etc.  It is so sweet!

Thursday, November 20, 2008

Restraints

I spent time this afternoon researching these arm restraints they want to use with Waverly.  Part of her condition means she chews on EVERYTHING and I truly mean EVERYTHING.  So whenever they want to do a craft or project in the classroom she puts the supplies in her mouth and that could be dangerous.  The school OT wants me to approve the use of arm restraints to keep her from bending her elbow, therefore unable to put anything in her mouth.  I just feel very uncomfortable restraining her like that.  Chewing isn't a behavioral issue, it is an actual need.  Both our private OT and pediatrician were not supportive of the restraints.  I asked other Sanfilippo moms who felt the same way.  The school says they tried them on Waverly and she didn't seem upset wearing them and was actually playing with the sensory items, instead of putting them in her mouth.  I think that I am going to arrange to observe and talk with our specialist about it.  So many decisions to make and I feel like I have no idea what I am doing!

I have distracted myself a bit by getting some Christmas shopping done.  It is VERY difficult to shop for Wavey.  She no longer plays with anything, so I ordered her some of her favorite shows on DVD.  I also got Oliver a Thomas train set.  He loves them at our doctor's office, so hopefully he will enjoy having his own set here at home.

Wednesday, November 19, 2008

Classmates

On Monday I had to drive Waverly to school, because I brought in cupcakes for both special needs preschools classes in honor of Waverly's birthday.  We were running a little late, so I had to bring her back to the classroom.  When we got there, an adorable little boy yelled "Hi Waverly" and seemed so excited to see her.  I was brought to tears.  I wrote her teacher just to say how sweet that was and she wrote me the sweetest letter taking about just how much Waverly was a part of the class.  The kids are beginning to understand that she puts things in her mouth and are saying "No, Waverly" when she tries.  She is also loved by another little boy who is always trying to hug her.  I felt so good knowing that her classmates enjoy her company and miss her when she is not there.

We also did have our Make-a-Wish meeting on Monday night.  Waverly wished for a trip to Disney World.  She is going to love it!!  They were explaining all that Make-a-Wish does to make the trip even more special.  It is going to be incredible!

Oliver can now say "ball".  He is doing such a great job with signing and he is trying so hard to mimic speech sounds.  He also keeps getting stronger and his PT is so impressed with his progress.  Waverly has been singing "Happy Birthday" non-stop.  She also is starting to say "5" when asked how old she is.  It is so amazing to see her trying to learn something new.

Tuesday, November 18, 2008

Photos

Here are a few photos that Kamarah took while she was visiting.  (She is talented and got some great shots.)  I thought you would enjoy them.

Oliver on the swings

Waverly at a local playground

Oliver holding his feet

Waverly watching Mickey Mouse Clubhouse

Monday, November 17, 2008

Summary

I had such a wonderful weekend with my friends, Michele and Kamarah.  It was so nice to be together again.  (The last time was Michele's wedding over 2 years ago.)  Plus this was the first time they met Oliver and saw all of us after the kids' diagnosis.  I have shared with them so much of my life, the ins & outs of taking care of the kids, my fears, my sadness, my failures...but having them here with me in the daily routine was so valuable.  They were able to see first hand all that goes into taking care of the kids.  The incredible patience Matt and I have to use when dealing with Waverly & Oliver.  The craziness of doctor appointments (they went with me to the ENT with both kids).  The anger of Sanfilippo's effect on my family.  The times when I just want to cry or scream or both.  We shed a lot of tears together during their visit.  They fell in love with Waverly and Oliver.  They also know that their next visit is going to be drastically different.  The changes that will take place in both kids is so upsetting.  We watched videos of Waverly from the past few years and they understand when Matt & I say we are losing her.

We also laughed A LOT.  They are friends that you can just jump right back in and pick up where you left off.  We stayed up way too late each night and simply enjoyed our time together.  I can't wait to see them again.

In other news, we did find out that Oliver is going to get tubes in his ears next month.  He has had a lot of ear infections, with more to come this winter.  Because of his hearing loss and MPS III, the ENT thought it best to get the tubes in.  Matt and I think this is the best decision, too.  Ear infections are NOT fun.

We also completed step #2 in getting a waiver to help us with medical costs and therapy for the kids.  We still have a few more months wait, but it is going to be worth the wait.

Tonight 2 volunteers from "Make-a-Wish" are coming over.  We are going to wish for a trip to Disney World for Waverly.  We still have to look at a calendar and figure out when we want to go.  I am thinking maybe next spring or fall....just not the hot summer.  She is going to love it.

Saturday, November 15, 2008

Waverly's Past Birthdays

Waverly's 4th birthday party in London

Waverly turning 3 in Arlington

Waverly turned 2 in Bexley

Waverly's 1st birthday in Bexley

Waverly on the day she was born

Happy Birthday Waverly!!!

Today was Waverly's 5th birthday.  We cannot believe that our little girl has grown up so fast.  We had a Carvel ice cream cake (YUM!) and Wavey opened presents.  It was nice to celebrate with Kamarah and Michele.

In the midst of the celebration, there is heartache.  We spent some time last night watching videos of the past 5 years.  We wept together seeing all of the changes that have taken place.  There are fewer glimpses of Wavey, but we know she is still there.  

Friday, November 14, 2008

Laughter

My friends Kamarah and Michele are visiting for a few days.  It has been wonderful and I am already dreading taking them to the airport on Sunday to fly home.  I have forgotten just how much I love to laugh.  It has been cleansing for me.  What fun to stroll down memory lane with them.  We have been through so much together.

Throughout their visit we have been talking about "A Hundred for a Home" (www.ahundredforahome.com).  I am sure most of you who read the blog repeatedly are well aware of this incredible fundraising campaign they started for my family.  The amount of time and effort they have put into it is totally amazing.  I cannot believe that they are devoting so much energy into helping us move into a home that is safe and equipped to care for both Waverly and Oliver; and to assist us with offsetting medical co-pays and bills, equipment, and therapy services.  The stress of Sanfilippo in our lives is already unbearable, but knowing that some of the financial burden may be lifted is such a dream.  I am just in awe of their love for Matt, Waverly, Oliver and I.

I have enjoyed letting them into my day-to-day life with the kids.  I feel like they are getting a real sense of how Sanfilippo has changed Waverly and how it has effected our home life.  I feel sometimes isolated by the disease and it is refreshing to allow someone in.  I feel understood in a new way.

We are celebrating Matt today.  It is his birthday!  (Happy Birthday, love!!)  I remember when I met Matt, I just knew that he was going to be special.  I wanted to choose someone who would be a terrific father, to give that gift to my kids.  Waverly and Oliver are blessed to have the best Daddy in the world.  And I am honored to be on this journey with such a remarkable man.

Wednesday, November 12, 2008

Recap

Sorry for the quietness on the blog.  We were in Ohio visiting Matt's family.  After a very long drive and a special stop in Columbus to see some dear old friends, we made it home late last night.  It was a nice trip.  We were able to see Matt's parents, his brother & sister and their families and some old friends. 

Now we will settle back into our routine.  Taking Waverly out of her environment and schedule always causes some frustration.  She was incredibly hyper - more than we have seen her in a long time - the past 2 days.  I am hoping that being back in our apartment and attending school will help calm her down.  She was up at 4:45am though.  I think today is going to be a long day.

Tonight my best friends, Kamarah & Michele, are flying in for a visit.  I have been counting down the days until their arrival for months!  I am so excited to have them enter our little world and get to know the kids.  I will feel even more understood when they see how drastically our lives have changed.

So today is going to be filled with cleaning, shopping, baking and preparing for guests.  It is going to be a wonderful 5 days.  (Thanks to Lisandro and Ryan for working out your schedules so they can come visit!!)  It is a wonderful day.

Thursday, November 6, 2008

100,000

I am very excited.  I have a little stat counter on my blog.  It keeps tallies of how many people visited per day, new visitors and repeats, and it even has a map so I can see where people are accessing my blog.  It's been just a fun little feature, but I am very excited today.  Today it will hit the 100,000 mark!!  That doesn't mean that 100,000 people have seen the blog, but it does mean that the website has been looked at that many times.  That is incredible!

When I look back to starting this about 18 months ago, it began as a way to keep my family and friends updated on the kids.  We moved to London, so I thought it would be a way to keep us all closer.

Then this past spring, when the doctor appointments got more serious and the diagnosis was given for both Waverly & Oliver, the blog took on a new role.  It became a place for me to cry, scream, vent, beg, plead, remember, wish, hope, dream, pray, talk, share, laugh....all rolled into one.

I remember March when the doctors told us that Waverly had MPS III.  I remember asking them if it was serious, if she was going to die from it.  Our wonderful young female doctor took Waverly's hand and started playing with her.  She had tears in her eyes as she showed Wavey a pen and paper.  I knew.  I wept and life would never be the same again for us.

I remember April, standing on Oxford Street in London, only 2 blocks from the embassy, when that same doctor called to tell me that Oliver's tests results were back.  All she said was "I'm sorry".  I knew.  I fell on the sidewalk, holding Waverly's hand and looking at Oliver sitting in the stroller.

I think back to May, when we visited Duke.  I remember the pain in having Waverly denied the cord blood transplant, but Oliver offered it.  I remember the agony - by far the most difficult decision I have ever had to make - of whether or not we would pursue the risky treatment.  It took Matt and I weeks to decide.  I spent every night in tears, stressed beyond imagination at the paths before us. And then when we came to our decision, we never looked back.  We have never regretted our decision and there was such unity in it for us.

It has been such a journey.  There were moments when I didn't think that I could continue and take the next step.  I know there is much in store for us and there will be many more times that I will lack the strength to move on.  But this blog is a reminder that we are loved, we have not been forgotten.  My children are making an impact on the world around them.  They have changed Matt and I in a powerful way.  It is my prayer that they will change your hearts, too.

Thank you for celebrating this small milestone with me.

Wednesday, November 5, 2008

Thank You

I wanted to say thank you to those of you who have been so supportive the past week.  It has been an incredibly difficult 2 weeks for me.  I have felt better the past few days.  I am still sad to my core, but emotionally I feel like the fog is lifting a little bit.  Thank you for allowing me to be honest in my grief.

Tuesday, November 4, 2008

Vote

I know everyone's attention is on the election today.  We cast our ballots absentee this year.  I wish I could have had the experience of standing in line and casting my vote.  What an exciting election!  Whatever the outcome, I hope and pray that families of children with special needs can see positive changes in health insurance coverage and exclusions. And that more money can go towards research for MPS and other diseases that are devastating families around the globe.

Monday, November 3, 2008

Yet Another Video



I need to take more video of the kids to document more recent times.  We were so bad in London.  We hardly ever got out the video camera, just the still.  We did take a little video just before we left London in August.  Here is a small taste of Waverly today.  I just wanted you to see some of the changes.  She is such a beautiful little girl, with so many thoughts and ideas inside her head & heart.  Get ready to fall in love...

Another Video



We are going through video of the kids and I found this little gem of a clip.  Oliver is just a few months old and Waverly is saying hi to him.  It is adorable.  She no longer says Oliver, so this is a wonderful little memory.  I am so glad it is captured on video.  Enjoy.

Monday, Monday

Waverly doesn't have school today or tomorrow for a teacher inservice.  This makes for longer days for all of us.  We all work better within the regular routine.

I spent some time this morning making doctor appointments.  We got in with an orthopedic doctor.  I am especially excited to see her.  Waverly turned in foot is causing a lot of concern for Matt and I.  I think she is going to need a brace so she doesn't damage the muscles and tendons.  I have also made arrangements to take the kids to see a doctor who specializes in the MPS diseases.  She has a team of therapists and developmental pediatricians who offer so much help and advice on handling children with Sanfilippo.  She is in NC and we had a great appointment with her in May, when we were finding out about the cord blood transplant option.

Oliver is continuing to impress us.  He is picking up more signs and using them throughout the day.  He also went and found a little toy pig last night, when I was showing him the sign for pig.  He totally understood me.  It is incredible!  He doesn't talk nearly as much as Wavey did at his age, but he is still communicating beautifully.

Sunday, November 2, 2008

Baby Teeth

This morning Matt and I both noticed that Waverly's teeth looked different.  Her bottom teeth has less gaps.  Upon inspection of her mouth, I noticed that she has an "grown up tooth" coming in behind her bottom front teeth.  At first I panicked and envisioned taking her to the dentist and having them extract her baby teeth.  Then, after a call to my sister and mother of 4 kids, she calmed my nerves and said this happens and that the baby teeth will eventually be pushed out of the way.  Then I thought surely, Wavey is too young to begin losing teeth.  Again, she said that she is right about the age when the process starts.

Then, I cried.

I can't believe my little girl is growing up so quickly.  She is frozen in my mind at 3.  Age 3 was when we really began to notice the differences between Waverly and the other kids her age.  That was around the time she started having difficulty doing the puzzles that used to be so easy for her.  All of a sudden, she was putting everything she could get her hands on into her mouth.  Today, was a reminder that my little girl is growing up.  Even though she struggles to do things that used to come so naturally, she is still growing taller and older.  She is going to celebrate her 5th birthday in 2 weeks.

Saturday, November 1, 2008

Happy All Saints Day!

It is simply gorgeous today.  We decided to take a walk and Oliver tried out the tricycle for the first time.  Before this photo was taken, he was having a ball.  He even tried peddling a few times.  We were shocked to see his little feet moving.  He was so cute.

Here is Waverly looking at one of the many fountains in our apartment complex.  She looks so pretty.

Oliver loved the fountain.  He kept clapping in excitement - praising the fountain for the water he could splash.

It's been a good day.  We picked out glasses for Waverly.  (Now if she will only wear them.)  We choose two styles to order and we will try them out next week and see which one works best.  We also spent some time outside enjoying the beautiful fall day.  While driving to therapy the other day, I passed a cute little pizzeria that claimed to have NY style pizza and they sold it by the slice.  We tried it out today for lunch and while not quite Salvatore's quality, it was still quite good.  It was super child friendly and I think it is going to be a regular place for us.

It has been nice to have a regular day finally.  We have been so busy out of town or moving, that this is really one of our first weekends where we can just enjoy it.  After nap time (hence a time to upload photos and blog), we hope to get outside more and enjoy the sun.

Friday, October 31, 2008

Happy Halloween!!!

Here is Oliver dressed up as Goofy.

They didn't do a very good job trick-or-treating and we only had 1 kid come to the apartment for candy.  So, next year we will have to come up with a new plan.

A rare shot of both kids together and looking in the camera's direction.

A very excited Oli after we put him in his costume for the first time.

Happy Halloween!!!

Waverly is Minnie Mouse today.  I took this photo just before she left for school.  They were going to have a costume parade and go trick-or-treating around the school.  I will post more photos later tonight, after we return from our Halloween festivities.  Oliver is going to be Goofy.

Thursday, October 30, 2008

Time

It has been such a difficult week for me.  I knew that settling into life here in Virginia would bring up a lot of emotions.  I think entering into November is also going to be tough.  This will be our first holiday/birthday season since the kids were diagnosed.  Waverly will turn 5 in a few weeks, Matt and I each celebrate birthdays, Thanksgiving, Christmas and then Oliver will be 2.  Marking the end of a year is scary now.  It means time is flying by and the time I have with Waverly & Oliver is slipping away.

Wednesday, October 29, 2008

Tough Day

I had a tough day.  My emotions got the better of me and I was so lonely & depressed.  I still am.  But, I felt love and support from my friends.  I needed that.  I also laughed hard with my friend, Kam.

I took these photos of Oliver this afternoon after physical therapy.  I love how cute he looks sitting at the table playing with his bricks.


I especially like how cute he looks screaming for help while standing in the bucket of bricks.

Tuesday, October 28, 2008

It Still Fits!

Waverly and Oliver sitting in our courtyard.  (It is next to impossible to get them both looking at the camera while smiling.  This is the best I could do this afternoon.)

Oliver walking to the bus stop.

Oliver can still fit into my favorite hat.  It is so cute and he can't pull it off.  Here we are getting ready to get Wavey from the bus stop.

Neuro

I think I spend most of my time driving to, waiting for, attending or arranging doctor appointments and therapy sessions.  But, I do not mind.  Having such a great team of people working with our family makes life easier.

Today we met with our new neurologist.  Once again, I think we have found a doctor that clicks with all of us.  He was kind and thorough.  He is referring us to an orthopedic doctor.  They want to check the kids' spines and work with Waverly's leg.  Her right foot is really turning in and without some type of intervention, she could damage her muscles.

I also wanted to take a moment to thank all of you who have visited the website www.ahundredforahome.com.  And thank you to Kamarah & Michele for organizing it, Megan for creating the website and Laura for managing the facebook cause.  I am amazed and inspired by your love for my children.

Monday, October 27, 2008

Cardio

Good news.  We took both kids to Children's this morning to meet with a cardiologist.  Kids with Sanfilippo sometimes have heart problems, so our geneticist recommended forming a relationship with one and getting a baseline.  It was a great appointment.  Our doctor was wonderful.  Both kids had blood pressures taken, an EKG and an Echocardiogram done.  (Much more thorough exam than I was expecting.)  The doctor didn't see anything to cause concern - everything looked good.  Whew.  Oliver had a lot of heart and lung issues at birth and he had some elevated blood pressure issues, but everything is fine now.

Tomorrow we will meet with our neurologist - again just to form a relationship and get a preliminary exam.

In other news, Oliver has really started to improve in signing.  He actually used 2 signs together last night - "want" and "eat".  (Most of his signs revolve around food.)  He now has about 8 signs in his vocabulary.  I am so proud of him.  It is sad that in the midst of celebrating his accomplishments, Matt and I can only think that in a few short years we will begin to see all that he has gained disappear.  But the more we can teach him today, the more difficult it will be for Sanfilippo to take away.

Sunday, October 26, 2008

Keeping Busy

This has been a very busy weekend for our family.  Our friends, Michele and Kamarah, launched a fundraiser for our family called "A Hundred for a Home".  (You can find out more at www.ahundredforahome.com)  Matt and I have been amazed by their love for our kids and their dedication to finding a way to help.  We are overwhelmed by the responses from friends, family and strangers.  It is difficult to even begin to express our gratitude.  

My parents were down this weekend.  We finally have things on the walls (thanks Al!) and the kids had a ball with Grandma & Grandpa.  We were also able to have breakfast with another foreign service family who have become our friends.

Today we drove out to Loudon County Virginia for a photo shoot for the kids.  Some friends of ours arranged to have a photographer capture some outdoor photos of the kids in the fall leaves.  I think she was able to get some great shots of everyone.  I can't wait to see them!!  We had so much fun running around the field in the leaves.  Waverly was in her element.  I hope to share some of the photos soon.

Friday, October 24, 2008

A Hundred For A Home

My name is Kamarah and my college roommate, Michele, and I are close friends of Shannon's - we went to school together at Taylor University.

As the last year has progressed and we have learned of the diagnosis of Oliver and Waverly, Michele and I have been burdened to figure out how we can help Matt and Shannon.  In one conversation I had with Shannon, she expressed her and Matt's desire to buy a house and make it a comfortable home for their family.  However, due to the high cost of living in Northern Virginia, affording a house is extremely difficult for them right now.  (As I's sure you know, they are currently in a  two bedroom apartment.)

So, Michele and I created an exciting opportunity for people to give in order to help Matt, Shannon, Waverly and Oliver....but we need your help!!!

It is called, "A Hundred for a Home".  The goal of this fundraiser is to ask as many people as possible (our goal is 4,000) people to each donate $100.  All of the money will go toward helping the McNeil's purchase a home, make necessary home modifications (to make it wheelchair accessible), as well as their out-of-pocket medical expenses.

Michele and I believe that Matt and Shannon's experience is a unique one and that people truly would like to be a part of helping them.

Please check out  www.ahundredforahome.com  for details.

Thursday, October 23, 2008

Video - Take One


So this is my first time trying to post video to my blog.  Here is my trial run.  This is a little clip of Waverly taken 2 years ago at our apartment in Arlington.  (Note the furniture was rented.  We did not choose to purchase that hideous chair.)  Waverly is screaming in excitement because Big Bird and Snuffy were about to come on the screen.  It cracks me up every time I see it.  I hope it makes you smile, too.

Remembering

I spent part of the afternoon reading through my blog.  I was reading back through March and April when the kids were diagnosed.  I remember those moments so clearly.  The emotions feel so near the surface, yet those days feel so far behind.

Matt is working on putting some of our video and photos from London into short video.  I am hoping to be able to post it on the blog when it is complete.  It is strange to see the photos of the kids before we knew they had a hidden horrible disease.

Today has been a sad day.

Wednesday, October 22, 2008

No Mouth

Yesterday, while Matt and Oliver were at the Natural History Museum, they were listening to a docent talk to kids about dinosaurs.  She was holding up a rock-like item and asked the kids what it was.  She handed it to Oliver to look at while the kids were guessing and then revealed it was petrified dinosaur poop.  In perfect timing, as soon as she said it was poop, Oliver tried to eat it.  The kids laughed, Matt cracked up and Oliver enjoyed the attention.  He is such a performer.  

Both kids had physical therapy this morning.  They both did great.  Waverly is warming up to her therapist and was so much better than last week.  I am really proud of both of them.

Tuesday, October 21, 2008

Swallow

We just got back from Children's Hospital.  Waverly had a swallowing study done.  She did a great job.  She was scared when they strapped her into a big chair.  She kept saying "boo boo hurt".  But she was calmed by the fact that I could stay there with her (big lead apron on).  The test went well.  She didn't have any trouble with anything except for the liquid, which is what we have witnessed.  She was able to swallow, it just took her longer.  There is no need to modify her diet or anything yet.  This will provide a good baseline for her next test.

Oliver spent the morning with Matt at the Natural History Museum.  He loved walking around the animal room.  They had a nice bonding time together.

Monday, October 20, 2008

Kindergarten

I had a meeting tonight at Waverly's school for all of the special education preschool parents who have kids moving into kindergarten next school year. The meeting itself was informative, but basic. Afterwards, I spoke with both Waverly's preschool teacher and the administrator who will handle her kindergarten placement. I was thrilled that Wavey's teacher confirmed what Matt and I are so adamant about, that Waverly will do much better in a smaller classroom with other special needs kids. Once we described Waverly to the administrator, she seemed to agree. I think this will make the transition into kindergarten much easier for all of us. I feel like a little bit of anxiety has been taken off my shoulders.

Moo!!!

This weekend was spent continuing to make the apartment feel like home.  We are close to finishing and I think that after my parent's help this weekend hanging up some shelves, mirrors and pictures, the place will look really nice.

Today, Wavey was off for a short day at school.  She was a bit nervous about the bus experience today.  There was a new driver and assistant.  Waverly works best with a familiar routine.  Oliver had a speech therapy session after lunch.  He did such a great job!!  He is now signing "more, finished, bubbles, puzzle, please" and he started signing "cow" today and trying to say "Moo".  It was wonderful to watch him learn and try to put it into practice.  

Priya, you would have been very proud of him.  Especially considering Wavey was so entertained whenever you would sign "cow".  I wish you could see him do it.  I will try to capture it in a photo.

Waverly is showing more difficulty with stairs.  She is stumbling as she descends them and keeps tripping at curbs.  The apartment we are in has an entrance/exit without stairs, so we are using that exclusively now.  She is still going up and down her little step stool in the bathroom which is nice to see.

Tomorrow I am taking her to Children's for a swallowing study.  Kids will Sanfilippo eventually lose the ability to chew and swallow.  She is showing some early signs of difficulty, so we are going to see someone for an evaluation.  It should be painless...although keeping her attention to the task and still is going to be quite a challenge.

Saturday, October 18, 2008

Photos

Here is a picture of the kids that I took today.  Wavey got a haircut last night.

Here is Wavey's side of the room.

Here is Oli's side of the room.

Their closet and books shelf.