Meet the McNeil Family

Meet the McNeil Family

Tuesday, May 24, 2011

Vote Today

The National MPS Society is in contention for up to an additional $500,000 grant from Chase Community Giving.  (They won $25,000 last month!!)  You only have to vote one time and you have to have a Facebook account to cast your vote.  Click HERE to vote.  You have to first "like" Chase Community Giving and then you will be able to vote.  Voting ends tomorrow May 25th.  Please help us in our quest to fund research to find a cure.

Thank you!!

Improvement

Well, the Ibuprofen seems to be doing the trick.  Waverly has been happy the past few days.  No evening weeping and last night she was actually giggly.  Both Matt and I commented that the real Wavey was back.  The rheumatologist said it could take a few weeks for the higher dose to begin its effectiveness.  It has been 2 weeks and I think we are moving forward.  She is still resistant to touch - she cried for most of her PT session and cries when I attempt to do her stretching.  I hope her joint pain continues to decrease.  We meet with orthopedics in a few weeks to discuss her hip problems.  I hope we will have more answers and direction after that appointment.

We are still waiting for news on the house.  Our realtor said it would be at least 30 days before we hear anything.  It has been 7.  We are hopeful that the sale will go through and we can move in sometime this summer.  We would love to be all settled before school begins in September.  And we will be able to walk a few short blocks - perfect location.

Thursday, May 19, 2011

Appointment Recap

Waverly and I spent 8 hours at NIH today.  We were supposed to begin the morning with the PMR doctor to get casts made for new orthotics.  However, the scheduler made a mistake and didn't book the orthotist.  We will be making another trip back for that within the next few weeks.  

We then met with ophthalmology.  It was a very long appointment, but everything looked good.  She is unable to tolerate glasses anymore, but we need annual checks to confirm eye health.  Waverly did not enjoy the eye drops.  I have never seen her react so strongly to a procedure before.

Next we met with rheumatology.  Waverly has had a lot of swelling in her lower extremity joints.  Her ankles and knees are getting red and warm.  Her knees are especially swollen.  They ordered x-rays - no structural issues with the joints.  The question seems to be what is causing the mobility issues.  It is her hips, which is putting extra stress on her knees?  Does she have an inflammatory disease that is causing pain, thus slowing her down?  All of the specialist realize there is a problem, but I am having a difficult time getting people to fully investigate.  The doctors are blaming Sanfilippo.  I need a better answer than that.  It is my goal to keep her as mobile as possible for as long as possible.  I wrote our geneticist tonight, expressing my concern.  As for now, we have her on a high dose of Ibuprofen to help the inflammation.

Thankfully, she hardly cried at all tonight.

Wednesday, May 18, 2011

One Step Closer

We just received word that the sellers accepted our offer.  Since this is a short sale, we still have to wait for the banks to approve the contract.  But we are one step closer to a home!!

Tuesday, May 17, 2011

We Found A House

We made an offer on a house this morning!!!  It is a short sale, so we have a long wait ahead of us.  It is a small 3 bedroom home, only 2 blocks from the kids' school.  It has a big, flat back yard that will be perfect for the kids.  Please send us your positive thoughts and prayers that the sale goes smoothly.

Sunday, May 15, 2011

Happy MPS Awareness Day!!!






This was our attempt at getting photos of the kids yesterday.  As you can see, we weren't entirely successful.  However, this is a good pictorial of how difficult a process it can be.  We will try again later today.

Friday, May 13, 2011

A Day to Remember

Today was MPS Awareness Day (observed) at the kids' school.  It was an incredible day that I will forever remember fondly.

I approached the principal and teachers months ago with a desire to do something school wide.  We had always focused on the individual classrooms, but now that Waverly & Oliver are at the same school I wanted to tap into the entire community.  Everyone was on board and thought that a simple wear purple campaign would be a great way to get kids interested and involved.  The student council approved our request (yes, Wavey's teacher actually had to go before them and ask them to support the idea).  Kids made posters reminding everyone about today and it has been mentioned on their morning school news all week.

I had to be at school for a volunteer appreciation luncheon, which was perfect timing.  I was so excited to see how the school responded to our wear purple request.  When I arrived, their was a gym class on the field running laps.  The kids were older and I was so excited to see that well over half of them were wearing something purple.  As I walked into the school and passed the playground, I was moved to tears.  A bunch of kids were at recess and almost all of them were wearing purple.  I was overwhelmed by such a simple act that spoke volumes.

I popped into Waverly's classroom and everyone was wearing purple.  The teachers and aides who work with Waverly are INCREDIBLE!!  We are so fortunate to attend such a great elementary school that values special education.

When I arrived at the lunch, even a bunch of the other moms were wearing purple!!  I haven't really formed relationships with any of the parents.  There are a few within the special needs classes that I know, but no one in the "main stream" classes.  I ate with a few lovely moms, one of whom also has a first grader.  Her daughter is in the class Waverly joins for music, art, PE, etc.  She told me her daughter was super excited to wear purple today to support Waverly.

After the lunch, Waverly and her aide were going to be in the first grade classroom making bracelets for MPS Awareness Day.  Miss Erin, Wavey's aide, got purple beads and letter beads that spelled Waverly & MPS.  The kids each made a bracelet in celebration of the day.  When I walked into the classroom, the tears started to flow again.  I actually had to back out and compose myself.  EVERY child was wearing purple.  Waverly was sitting on a rug in the front of the classroom and no less than 10 kids were surrounding her.  They were patting her head, rubbing her back, handing her a "Sammy the Seal" book. When I came in they were excited to tell me that they met Oliver, too.  (They really loved him!)  They showed me their purple shirts and bracelets.  They asked me to spell Waverly's name for them as they strung their beads.  They asked questions.  The teacher told me that Waverly was the most popular first grader.

I stopped by Oliver classroom.  His teacher had hung photos up of the class in the purple tee shirts they had made.  They also made a really cool poster for MPS Awareness Day.  Of course, the preschool staff was decked out in purple.

Here are a few photos from our day.  (I don't want to put photos up of other people's children.)  The first is Oliver with his teachers.  The second is Waverly & Oliver under the purple ribbon Oliver's teachers made.  And the third is Waverly with Miss Erin.




Today was so much more than I could have ever imagined.  I was expecting a smattering of purple around the school.  Instead, it was everywhere.  Almost all of the kids and staff were wearing purple.  Such a simple act, that may have seemed meaningless,  However to this mom, it was an overwhelming show of support.  It was an obvious reminder that kids who are different matter.

Awareness for MPS was most definitely achieved in Vienna today.  And I think that the hearts and minds of the students at VES were positively impacted by the simple gesture of wearing purple to show support for their schoolmates.

Thank you VES teachers, staff and administration for making today such a success!!!

Wear Purple!!

My blog has been down the past 2 days due to issues with Blogger, but hopefully all will be restored soon. In the meantime, I wanted to take a moment to remind you that Sunday May 15th is MPS Awareness Day. Purple is the color of courage and has been adopted as the color to for MPS diseases.  Please wear something purple or make a purple ribbon on Sunday.  Join us in supporting all of the families who have a child with MPS.  Help us raise awareness.

MPS Awareness Day 2010

Wednesday, May 11, 2011

On The Right Track

Waverly & I had a marathon day of doctor appointments today.  Our geneticist is quite possibly the coolest lady around!!  Every time I leave an appointment with her, I wish I would have applied myself more and gone to medical school.  She is the doctor I wish I could be.  She responded so quickly to my plea last week and got us in to see specialists today.  

We started our morning in PMR.  The doctor was wonderful.  He took an interest in her whole person, not simply focusing on his one area.  He made some recommendations for new orthotics.  He is going to assist with casting her feet, for the perfect fit.  We then had a consult with PT.  This is standard procedure when seeing the PMR doc.  She was lovely.  Her recommendations were in sync with our private PT, which was  confirmation that the kids are in good therapeutic hands.  We also met with OT.  She is ordering us a bath chair to assist with bathing Waverly.  Wavey hates bath time!  The hope is that sitting in a supportive seat, will comfort her enough to make the bath less traumatic.

Then we moved on to genetics.  Our geneticist, who has seen the kids for 3 years, was so surprised to see Waverly upset.  Wavey just isn't a fussy kid - hardly ever cries.  However, she cried for almost our entire 90 minute appointment.  She flinched when we moved her hips and knees, eyes welling up with tears.  After consulting the most recent x-rays and examining her today, our geneticist is fairly certain Waverly is having hip pain.  Her hip sockets are rough and worn, with minimal cartilage.  That bone on bone friction can be very painful.  Before we intervene, the doctor has asked 2 orthopedists to look over the film and make recommendations.  We are also going to see a rheumatologist, due to the swelling in her joints.

More appointments.  More waiting.  But I feel like we are on the right track to solving the mystery.  For now, we have increased her Ibuprofen to keep the swelling down and take the edge off of the pain.  We may end up getting Cortisone shots, taking anti-inflammatory meds or pain meds.  

I am just so thankful that we have this wonderful relationship with our doctor.  Before we left, our doctor  gave Wavey a kiss on the top of her head.  That is an excellent doctor.

Saturday, May 7, 2011

The Crying Has Returned

I am at a loss.  Waverly has been crying so much the past week.  She is crying nearly continuously when she arrives home from school and she has been shedding more tears in the classroom.  Her mobility has definitely decreased over the past few months.  Her hamstrings and heel cords are getting tighter.  Her range of motion has decreased.  Her knees and feel have been swollen at times.  We have seen countless doctors, who have been unable to provide any answers.  Blood work and x-rays have been clear.  Our physiatrist is unable to see Waverly until the end of July.  We saw someone new who recommended a new style of orthotics, but his knowledge of Waverly & Sanfilippo were minimal at best.

I contacted our geneticist at NIH, after a particularly bad day.  Waverly had cried for 4 hours straight.  She immediately contact the PMR doctor she works closely with and he is going to see her on Wednesday morning.  He has a lot of experience with Lysosomal Storage Disorders and mobility issues.  I was thrilled to get an appointment so quickly.  We will also follow up with our geneticist that same day.  She wants to give Wavey a thorough exam, to see if there could be anything else going on.  She knows Waverly and knows that crying is not at all like her.

I hope we can find some answers.  She cried almost the entire time we were at a birthday party this afternoon.  She is unable to be comforted.  Her eyes well up with tears.  I truly think she is in pain.

Sweet Sophie

We went to a 4th birthday party for our friends' daughter, Sophie.  She is such a sweet little girl who has been so kind to Waverly & Oliver.  When we arrived at the party, which was held at an indoor playground, Sophie came over to greet us.  We then heard her exclaim over and over again to her friends, "Waverly & Oliver are here!  Waverly & Oliver are here!".  It brought tears to my eyes.  I was so touched to see such excitement because my children were at her party.  What a beautiful memory.

Happy Birthday, Sophie!!

Thursday, May 5, 2011

MPS Awareness Day

MPS Awareness Day is quickly approaching.  This year, the kids' school is joining in our effort to raise awareness.  A flyer was sent home yesterday asking parents to have their kids wear purple on Friday May 13th in support of Waverly & Oliver.  The Student Council is busy making posters reminding kids to wear purple.  And they are highlighting the event in their daily news video.

I have been so nervous about reaching out to the school community.  I  worry that parents are going to be upset for some reason and cause a fuss.  However, the response from the teachers and student council has been so wonderful.  I am truly excited about next Friday.  I will be at school for a volunteer event, so I hope to see a sea of purple.

Thanks to the VES community for showing your support for Waverly & Oliver.

Thanks for Voting!!

The National MPS Society won $25,000 from Chase Community Giving!!!  Thanks to all of you who voted via the facebook app.  I am going to ask you all to cast one more vote on May 19th.  We are in the running for an additional $500,000.

Monday, May 2, 2011

Jeans for Gene Therapy

The Sanfilippo Research Foundation (aka Ben's Dream) is challenging us to raise one million dollars to find a cure.  Please join us: Jeans for Gene Therapy

May 15th is MPS Awareness Day.  Spread the word by donating $1 and then sharing the link with your friends.  Do it for Waverly & Oliver.  Do it for the healthy kids in your own lives.  Do it because right now there's no cure,  but it doesn't have to stay that way. 

Sunday, May 1, 2011

Perfect Spring Day

Yesterday was the most perfect spring day.  We spent the afternoon downtown enjoying the National Mall.  Oliver loves to run free and of course he loves to play in the fountains.  We actually didn't take Oliver's stroller with us.  He walked almost the entire time, except for a few blocks on Matt's shoulders.

Waverly was a fantastic walker, as well.  She always enjoys being out and about.  She is such a good girl.  I think her favorite part of our day was eating cupcakes from Georgetown Cupcakes.  Yum!!