Meet the McNeil Family

Meet the McNeil Family

Thursday, March 31, 2011

Blog Comments

I wanted to let all of you know that I changed the settings on my blog regarding comments.  You will now have to enter a verification word to prevent spam.  I also turned on the "comment moderator" setting.  Your comments will only be seen by me.  I will then choose whether or not to publish them for everyone to read.  If you want to keep your comment private, just let me know in your message.  I know people have wanted to share personal information, email addresses, etc via comments.  This should provide a safer way to do so.

Thanks for joining us on our journey!!

Wednesday, March 30, 2011

Jill's House

This morning, Waverly & I visited Jill's House for an intake meeting.  It is an amazing place, located just a few miles away from our home.  Jill's House opened a few months ago on the campus of a local church.  The pastor's daughter, Jill, is 20 years old and has significant special needs.  He saw a need in the community to provide respite to families who have children with special needs.  Jill's House will provide families with weekend respite and day camps.  We will be able to take Waverly there (and Oliver when he turns 6) for either 24 or 48 hours.

I don't think there is another place like it in the US.  The building is a beautiful lodge.  They have private bedrooms and accessible bathrooms for each child.  They even have a few Sleep Safe beds!  There are sensory rooms, calming rooms, heated indoor pool, gym, music room, art room, computer lab, playground with fully accessible equipment.  I want to stay there!!

I am so excited to have such an amazing institution so close by.  Waverly is going to have a blast there.

Tuesday, March 29, 2011

Rest in Peace, PapPap

Yesterday was my PapPap's funeral.  It was a wonderful service to honor a wonderful man.  My sister spoke and my grandfather would have been so proud.  Here are a few shots of the kids.  Oliver kept his tie on the entire day.



Wednesday, March 23, 2011

Thank You!!

THANKS to those of you who participated in the Thirty-One fundraiser.  We were able to raise $500 for Ben's Dream!!!  This was such a fun and easy way to help fund research to find a cure for Sanfilippo.  Thank you for shopping and making a difference in the lives of MPS families.  I have some amazing friends!!

And a HUGE thank you to my friend Sarah, the consultant, who is forgoing her commission in order to make the donation.  Thank you so much, Sarah!!!

PapPap

My PapPap (Grandpa) passed away last night.  He was 85 years old and would have celebrated his 64th wedding anniversary in just a few weeks.  He was a true environmentalist and a wonderful man.  I had a special conversation with him recently.  He told me that he was ready to go to heaven and prepare the way for Waverly & Oliver.  He can make and fix anything, so he said he was going to build wagons and swings for the kids to enjoy.  Such a beautiful image.

Here is PapPap and Waverly (she is giving him a kiss).  He loved the kids so much.

Sledding!!

My friend David took this photo of Matt and Oliver while we were in Minneapolis.  This is Oliver's first time sledding.  He loved it!!

Monday, March 21, 2011

3 Years

Yesterday was the 3 year anniversary of Waverly's diagnosis.  This milestone did hurt as deeply as the others.  It may be because Matt is out of the country and I have been busier than usual.  I didn't want to remember the day our lives were turned upside down.  Instead, I want to take a moment to thank all of you for following our story, for taking an interest in Waverly & Oliver.  Thank you for joining us on our journey and for supporting us in so many ways.  I hope that Waverly & Oliver have made a lasting impact your life.  I hope they have inspired you to be thankful for the health of your own children and to have compassion on those children who have special needs.

I can't believe it has been 3 years...

Sunday, March 20, 2011

Sibling Love

The kids are typically not cuddly with one another, but I captured this moment this afternoon while they were watching "Lumpy".  Oliver's elbow looks like it is hurting her, but it was actually quite sweet.

Hanoi

Matt flew to Hanoi on Friday morning for business.  He was incredibly excited for the opportunity to travel internationally again - that is exactly why we joined the foreign service.  Since the kids' diagnosis, we have been forced to remain stateside.  It is the best decision for our family, but we constantly miss the way things were "supposed to be".

My parents came down for the weekend to help and my mom is staying for a few extra days.  Then we will road trip it to PA for a few more days until returning home to greet Matt at the airport.  I can't wait for our reunion.

Matt emailed this morning.  He is safe in Hanoi.  He spent the day exploring the city with some coworkers.  He is having a wonderful time.

Friday, March 18, 2011

Natural History Study

We had a wonderful time in Minnesota.  We spent Tuesday meeting with the doctor in charge of the study. He has become a favorite doctor of Matt and I.  The rest of the day was spent doing developmental testing. If you have never gone through this, it is totally exhausting for both the adults and children.  It is hours of testing - putting puzzles together, coins in piggy banks, drawing straight lines, stacking blocks, etc.  Then you are handed 7 different questionnaires to fill out, to help assess their developmental ages.  I know that this is very useful information, however checking the "Not Able To Do" box over and over again is quite discouraging.

We didn't come away from the day surprised.  Waverly is losing skills - she has regressed since our visit 6 months ago.  Oliver has plateaued - he hasn't gained any new skills and actually lost some skills in the fine motor area.  While I knew both of these facts, it was still anything but easy to hear.  The doctors seemed particularly concerned that Oliver did not gain in any areas.

Wednesday was spent in the hospital.  Both of the kids went under general anesthesia.  They each had an ECHO, MRI, ABR, blood work and lumbar puncture.  It is always a long day...getting Oliver back in the OR, prepping Wavey, Wavey to the OR, waiting, meeting Oliver in recovery and then Waverly.  Both kids were exhausted.  We went back to the hotel, got take away and all went to bed early.

We flew home last night, after a few hours at the Mall of America.  They both did great on the plane and slept all night long without a peep.

Monday, March 14, 2011

A B C D E

I have stated many times that I miss Waverly's voice.  She used to love to sing and had memorized the lines to her favorite books.  I love the song "Miracle Drug" by U2.  One of the parts that speaks so deeply to me is, "I want to trip inside your head and spend the day there.  To hear the things you haven't said and see what you might see.  I want to see your thoughts take shape and walk right out.  The songs are in your eyes.  I see them when you smile."  I am so thankful we video taped her, although it wasn't enough.  

***Take note fellow Sanfilippo families with younger children.  Video tape them more often!!!***

Well this afternoon, on the plane to MN, Waverly surprised us by singing.  It has been many long months since she has said anything.  And then all of a sudden, clear as day, we heard, "A B C D E".  My head snapped around and I asked Matt if I actually heard what I thought I heard.  We both had tears in our eyes. What a precious gift.  Deep within her mysterious little brain, she pulled out 5 little letters.  5 notes in a simple song.  It was amazing.  And as quickly as it came, it went.  We have been singing it to her non-stop.  I am not sure if she will ever do it again, but I was so thankful for the reminder that she is still there.  I always knew she was, but it was nice for the little gift of her big voice.

Take 2

We flew to Minneapolis this morning for our second of three visits to the University of Minnesota.  They are conducting a Natural History Study for Shire Pharmaceuticals.  This will be only a 2 day visit.  The first day (tomorrow) is clinicals and behavioral testing.  They will assess the kids' developmental ages on various categories.  This is always a long day, but the information gained is useful.  Wednesday is hospital day.  The kids go to the OR to get an ABR, MRI, lumbar puncture and EKG.  We will fly home Thursday afternoon.

This information may not be all that useful to us specifically, however this is the first and only natural history study ever done for children with MPS IIIA.  We are so proud to be able to participate.  Waverly & Oliver are doing their part to help find an effective treatment and cure.

Saturday, March 12, 2011

Small World

I had 2 reminders today that we live in a very small world.

We ventured out to a local mall this morning.  I needed to make a return and Matt needed to pick up something.  As Matt waited in line with Waverly and I tried (unsuccessfully) to keep Oliver from having a total meltdown in the store, a friendly voice came up behind me.  She recognized Waverly from an article in our university's magazine.  It was so nice to make a local connection.  She was so kind and extended an invitation to get together.

After the mall and a disastrous attempt at lunch in a restaurant...we tried to take the kids to Pei Wei.  Not nearly enough room to accommodate a wheelchair and the line was much too long for an impatient little boy who was desperate to eat.  Matt fed the kids in the van, while I got take out for us....we ended up at our favorite playground.

I have to back up here for a moment.  On our flight to Orlando for Oliver's Make-a-Wish trip, we sat next to the nicest family.  The mom and I started chatting -  we talked the entire flight, which made the trip go by so quickly.  I told her about our trip, the kids, Sanfilippo, etc.  Our story.  She was so sweet and mentioned that her sister had a son with special needs.  Her mom also works at the kids' school.  We exchanged email addresses and hoped to keep in touch.  The next day I got an email from her.  She had mentioned to her family that she had met our family and one of her sisters has been following our blog for over 2 years.  She actually sent me a logo design about a year ago (which I still have saved).

I have now become facebook friends with the sister on the plane, the sister who sent the logo and the sister whose son has special needs (we have a family friend in common, too).

Fast forward back to today and we were able to meet the sister who has a child with special needs today at our favorite park.  What a lovely family!!  Their son is absolutely adorable.  It was so nice to spend some time connecting with another couple who *gets it*.

We had a wonderful day, enjoying the beautiful taste of spring weather and forming friendships with local families.  It has been so difficult to find our place here in DC.  Our foreign service friends come and go so quickly, so it is refreshing to meet people who aren't going to move back overseas in 9 months.  It is nice to finally feel like we are home here.

Thursday, March 10, 2011

MPS Awareness Day Prep

It is a little over 2 months away, but this morning I met with the principal at the kids' school to discuss MPS Awareness Day.  This is the first year Waverly & Oliver are at the same school, so I was excited to do something school wide.  The district has policies against balloon launches and handing out candy, so we opted for a Purple Spirit Day.  Friday May 13th, all of the kids at the school will be invited to wear purple to show their support for Waverly & Oliver.  The student council still has to give it their stamp of approval, but I am confident they will.  I am so thankful for administrators, teachers and school staff who love Waverly & Oliver and are excited to raise some awareness on a local level.

Mark your calendars everyone.  May 15th is MPS Awareness Day - it falls on a Sunday this year.  What can you do to raise awareness in your community?  Dress your family in purple, hand out purple ribbons to coworkers, ask your child's class to wear purple and take a photo.

Wednesday, March 9, 2011

Thirty-One Fundraiser

My friend, Sarah, is a consultant for Thirty-One.  They sell great purses, totes, wallets, organizing items, etc.  Super cute stuff, great prices and it can be monogrammed.  25% of all of the orders for my "party" will be donated to Ben's Dream (a family non-profit funding Sanfilippo research, specifically Dr. Fu's gene therapy research).  This is a great way to get some cute new items/gifts and help us get closer to finding a cure.

Please take a look at the online catalog and then visit http://www.mythirtyone.com/SarahGiere/.   Go to "My Events" and click "Shop Now" next to my name.  The orders will be submitted on 3/20 and your should receive delivery in 2-3 weeks.

Think end of the year teacher's gifts, Easter gifts, etc.  Buy and new bag and help us find a cure at the same time.  Happy shopping!!

Any questions, please ask me!!

Monday, March 7, 2011

Changes

This morning I took Waverly to Georgetown for her annual cardiology appointment.  I have a special fondness for this doctor.  Oliver was born with some serious heart and lung problems.  In the midst of the chaos in the NICU, a lovely doctor appeared.  She was capable and calming.  I knew the moment I met her that she was going to take very good care of my son.  She still does.  Of my daughter, too.

Everything looked good.  A little thickening of her aorta, but that is expected in children with MPS.  She was going to go over the ECHO again tonight, just to be sure.  I cannot begin to tell you how nice it is to see a doctor who sits down and takes time with her patients.  She is familiar with MPS and has seen children with Sanfilippo.

My sweet Waverly has been having a very difficult few weeks.  There have been so many changes in her behavior.  She is crying and whiney a lot, for no apparent reason.  She has been dropping to her knees more often while walking and her pace has slowed down considerably.  Her muscles are tightening - especially in her hips, legs and shoulders.  Her core is weakening, so she is leaning more to one side or simply tipping over when sitting on the floor.  She has also not been drinking as much as usual.  When I add all of these things together, I have grown very concerned.

Sanfilippo is a progressive disorder, meaning that Waverly & Oliver's symptoms will grow progressively worse.  Every time there is a change in her behavior, we fear that we have entered a new reality.  We worry that a favorite skill is going to disappear, only to be remembered or captured on video.  I hope these changes are a blip - only to have her bounce back to her usual bubbly self.  I fear that this is the disease, rearing its ugly head.  Slowly taking another part of my little girl away.

We have lost 3 beautiful girls in the past week.  Another 12 year old girl has been sent home from the hospital with hospice care.  The weight of this disease has grown so heavy and all too real.

Saturday, March 5, 2011

Respite

A few weeks ago I registered Waverly & Oliver with a respite program for children with special needs.  Mclean Bible Church's Access ministry is incredible!!  Last night was our first night.  As we went it, Oliver was super excited.  (We had been there once before for a Christmas Eve service.)  He must have had a great time, because he remembered where he was and was desperate to get back to the play rooms.  After a quick check-in with an RN (love that!), we took the kids to their rooms.  Waverly burst into giggles when we entered and she saw the smiling faces of 10 volunteers excited to play with her.  Oliver tore into his room and started playing.  No crying - no sad goodbyes.

Matt and I took off for a few hours and had dinner at a fantastic Vietnamese restaurant.  No kids.  No worrying.  Just a few hours to ourselves to relax, talk and share a delicious meal.

When we went back to MBC to pick them up, we were given little reports on how the kids did.  Waverly didn't stop giggling the entire time.  She loved the attention from all of the kids and volunteers.  The head volunteer in her room had read Waverly's intake form so thoroughly, mentioning they sang some of her favorite songs all night long.  Oliver's favorite part of the night were the moon bounces.  He has recently learned how to jump.  (Hooray!!)  He was a little timid at first, but once he relaxed he started cracking up.  He also played a chasing game with some of the older boys - running around a big room, interacting with his peers.

Successful night for all!!!  I am so excited that we have this wonderful resource just a few miles away.  We will most definitely do this again next month.

Friday, March 4, 2011

Frozen

I find myself frozen in disbelief at our loss this week.  It has been such a difficult time for the Sanfilippo community.  I still cannot believe 3 beautiful girls passed away this week.  They were only 12, 13 and 15 years old - much too young to leave this earth.  Please keep their families in your thoughts and prayers.

I cannot stop myself from looking toward the future.  Doing morbid math in my head, trying to figure out how much time I have left with Waverly & Oliver.  I have been attempting to focus on the here and now, enjoying the little things.  It has not been easy.  I ache for these mothers.  I fear for my own children.

Tuesday, March 1, 2011

We've Lost Another

I just found out that yet another little girl has passed away tonight.  Please keep Jasmin's family in your thoughts and prayers.  I am heartbroken for them.

This is the 3rd child who has died from Sanfilippo in the past 4 days.  As you can imagine, it has shaken our community.

Thirty-One Fundraiser


My friend, Sarah, is a consultant for Thirty-One.  They sell great purses, totes, wallets, organizing items, etc.  Super cute stuff, great prices and it can be monogrammed.  25% of all of the orders for my "party" will be donated to Ben's Dream (a family non-profit funding Sanfilippo research, specifically Dr. Fu's gene therapy research).  This is a great way to get some cute new items/gifts and help us get closer to finding a cure.

Please take a look at the online catalog (I have paper copies, too).  When you place your order, be sure to choose my party, so we can raise as much money as possible for Ben's Dream.  The orders will all be submitted at the end of the month, so your items will arrive in April.

Any questions, please ask me!!

*************************************************************************************
Shannon McNeil’s Fundraiser
25% of sales will go to Ben’s Dream for Sanfilippo Research.

Thank you for your interest in Thirty-One! I know you’ll love our products as much as Shannon and I do! This is a great opportunity to receive great, stylish new purses, organizational totes, and other accessories and help the McNeil family at the same time! And as the hostess, Shannon will also receive great 31 items that she loves for FREE! Thank you so much!

*How To Order - 
  1. order form - fill out carefully and completely. Make sure that you include your contact information, especially your phone number and email address in case I have questions regarding your order. Also make sure that embroidery information is written legibly. (You will begin receiving monthly emails from me that will show you the current monthly special and other great information. Don’t worry, you can always unsubscribe)
  2. online - go to my website at www.mythirtyone.com/SarahGiere. When you click “place an order,” you will find Shannon’s name...be sure to click “shop now” next to her name so that she gets credit for your order! 
*March Customer Special! - for every $31 you spend,you can get 1/2 OFF ANY purse! (see flyer included or go here http://thirtyonetoday.com/Portals/0/march2011customer.pdf).
*When ordering online, Half-price items must include item # + H when ordering.
*Monogramming Charges - all monograming is $6, no matter if it is 1 letter, 3 letters or a full name. Please remember to include this in your total.
*pg. 42-43 - Personalization Guide - use this guide to help you choose the style font you would like and the embroidery thread color (recommendations are listed for each fabric on pg. 43)
*Shipping and Tax Charges - there is an 8% shipping charge for all orders and all items will be shipped to Shannon. If you would like to have your items sent directly to you, there will be an additional $4 shipping charge. Tax charged for your items is 5%
*Payment - payment must be made before I submit the order. We take all types of credit cards, or you can pay by cash or check. You can makes checks out to me, Sarah Giere. 
***Orders Due to Shannon or myself - by Sunday, March 27***
Thank you so much for your support of the McNeil family and happy shopping!