Meet the McNeil Family

Meet the McNeil Family

Thursday, June 30, 2011

My Little Friend D


I love getting mail. I miss writing letters and sending cards. Today I received a beautiful surprise from my little friend D. D's mom and I became friends a few years ago when we first moved back to DC. D was diagnosed with a brain tumor when he was a baby and has since spent the past 6 years going through different chemo panels. His mom is an inspiration to me.

D's brain tumor has affected his eye sight and he is legally blind. He has been learning how to read and write in braille. He wanted to send me a little note and this is what he wrote. His mom wrote the words, but you can see the braille type underneath if you look closely. How awesome is that!! This little note will forever be a special keepsake.

I have been having a very difficult week, so this little note made my day. I was reminded but for Sanfilippo, I probably would have never met D and his family. We were introduced because of the issues we face as mothers. I would have missed out on the opportunity to get to know this extraordinary boy. One of the little blessings of Sanfilippo in our lives. It is important to find the positives in the midst of so much sadness.

Wednesday, June 29, 2011

Front Page!!

Much to our surprise, our family was featured on the front page of "The Morning Call" today. The reporter did a fantastic job and the photos are so beautiful. Be sure to check out the photo gallery - there are 24 photos to view. You will find the link below.


Thanks to Denise and Milton for doing such an excellent job!!

Tuesday, June 28, 2011

Still Waiting...

No real news to report on the house. We are still waiting for a negotiator to be assigned to the case. That is supposed to happen by Friday. It will be nice to know someone is at least reviewing the offer and the seller's "application" for a short sale. It will be 6 weeks since our offer was accepted tomorrow. I am still hoping all goes through and we can close on the house before school begins.

Weekend Update

We had a wonderful weekend in PA. My step-dad was interviewed by our hometown paper Saturday morning, as a follow up to his appearance on "Undercover Boss". The reporter also wanted to meet the kids and get some photos for his article. We spent about an hour speaking with him. He had obviously researched Sanfilippo and asked some great questions. I am excited to see the article and I will share it as soon as it is published.

The weather was perfect, so we spent most of our time outside. Oliver loves running around my parent's yard and going in/out of the baby pool. Waverly loves all of the attention she gets from Grandma and Grandpa. We grilled out, visited with extended family and took a walk to Rita's for ice cream. It was a lovely weekend.

Thursday, June 23, 2011

Summer Camp

I spend a considerable amount of time griping about living in northern Virginia.  The cost of living is ridiculous, the traffic is horrid and it is so transient that forming relationships is proving to be quite difficult. However, there are some incredible advantages to living in NoVA.  One of the highest things on the list has to be Jill's House.  I have mentioned JH in previous posts, but get ready for another installment of "I heart Jill's House".

Waverly started her mini summer camp yesterday.  Each morning I pack her little backpack with swim gear and changes of clothes.  Her lunch box is filled with treats and a sippy cup.  Then Oliver and I drop her off for 6 hours of fun with her friends at JH.  She literally starts to giggle and clap when we pull into the parking lot.  She is so excited, she can barely walk.  She spends her day at the pool, on the playground, having water play in the sprinklers, going to music, craft time, riding a special bike in the gym and snacking with her pals.

I grew up attending camp.  Day camps at first and then week long overnight camps.  I loved it so much I ended up spending many summers working at camp.  My summer camp memories are some of my fondest and I still have close friendships with my fellow counselors and campers.  I knew that summer camp would play a big part in my children's lives.

Once they were diagnosed, I never would have imagined that Waverly (& in 2 more summers Oliver, too) would have this opportunity.  It may not look like the summer camp I experienced, but it is perfect for my kids.  It is a beautiful sight to see families pulling up for drop off with wheel chair lifts, medicine bags, feeding tubes, walkers, hearing aids, and amazing kids with huge smiles on their faces ready for a day of fun.

I like to find the positives in life with Sanfilippo.  It is difficult some days, but today I realized that I may have missed this moment.  I am not sure if I would have slowed down enough to see the beauty in these kids.  To enjoy the little things in life.  Sanfilippo takes so much away from us, but I love that Jill's House doesn't let Sanfilippo take away the summer camp experience that all children should have.

Monday, June 20, 2011

Beaming!!


Waverly's end of the year party was Friday morning.  She has been so happy the past few days and I captured this fantastic smile as she was coming into the room.  She was very excited to see Mommy and Oliver at school.  

I am finding it more difficult to capture her beaming smile.  Sanfilippo is so present in most of her photos these days, it was nice to get *her* in this one.  I was lucky to get this moment on film - one of my all time favorites of her.

*V*O*T*E*

It is yet another opportunity for you to help us fund research for Sanfilippo.  The parent group, Team Sanfilippo, is competing for a $250,000 grant from Vivint.  We are currently holding onto the first place spot, but we still have weeks of voting ahead of us.  It is easy to vote, as long as you have a facebook account.  Simply *like* Vivint.  Then click this link: http://www.vivint.com/givesbackproject/charity/1471  or search for Team Sanfilippo in the Vivint Gives Back Project.  Cast your vote.  It is that easy.  Then each day, vote again - it takes mere seconds.  Share the link on your wall and ask your friends to join you.

People are always asking how they can help.  This is an easy and free way to help our family and all of the other families who have children with Sanfilippo.  There is currently no treatment available to our kids, but there is some exciting research in the field of gene therapy.

You can vote once per day thru 8/27!!

Wednesday, June 15, 2011

A Do Over?

Yesterday not a good day.  Waverly and I left the house early for an appointment down at Children's Hospital.  We have been waiting to see this particular orthopedist for months.  She was highly recommended to us from several of our doctors.  We are still trying to find the source of Waverly's pain (although it has lessened over the past 2 weeks).  Wavey's PT took the time to accompany us to the appointment, so she could give her input on what she is seeing in therapy.  We waited 3 hours to see the doctor - 3 hours!!!  When she finally appeared, she focused instantly on Vitamin D deficiencies in children.  She then talked about her experience with Sanfilippo, which seemed quite dated and uninformed.  She looked at Wavey's heel cord tightness, told me to put inserts in her shoes and said goodbye.  Umm, I waited months for this appointment, not to mention the 3 hours stuck in a little exam room, for THAT?!  I stopped her and said, what could be causing her pain, her crying, the redness and swelling in her knees.  She didn't think Wavey was in pain.  In the less than 10 minutes she was with her, she deduced that.  She didn't look at her hips or knees, she didn't watch her walk, didn't check her range of motion.  I just collapsed to the floor stunned as she walked out of the room.  The PT equally shocked at how little interest the doctor showed at addressing Waverly's needs.

In the midst of the morning, it was Oliver's last day of preschool.  I enjoy celebrating this little milestones.  It is good for my heart and spirit to acknowledge his second year of preschool coming to an end. I missed it.  I couldn't put him on the bus for the photo opt.  I missed the walk down to the local custard shop for a treat with the class.  And I was an hour late picking him up.  Bad mommy.

I wish I could have a do over.  For both kids.

Monday, June 13, 2011

Legacy

I spoke with a very dear friend this morning.  She and her husband just made a donation to a wonderful summer camp to send two kids with special needs to a week of camp.  They did it in honor of Waverly & Oliver.  I was moved to tears.  I am constantly looking for the beauty of Sanfilippo in our lives.  Waverly & Oliver impacted our friends and they in turn are impacting the lives of 2 other children.  A bit of positive in what sometimes feels like overwhelming negative.  Thank you friends!!

Friday, June 10, 2011

My Animal Lover


Here is a photo of Waverly and her horse friend from her weekend at Jill's House.  They took a field trip to a local horse farm that does therapeutic riding.  Waverly has always loved horses and we always take the opportunity to give her a pony ride when available.  I her little hand holding on to the horse's lead.

Tuesday, June 7, 2011

Waverly's Weekend

Since Waverly & Oliver's diagnosis, I have spent a lot of time thinking about all of the "they will never..." scenarios.  I shed a lot of tears.  This past weekend Waverly proved me wrong.  I never thought she would have a weekend away with friends - a sleepover adventure.  And then we found Jill's House.

We had signed up for a weekend of respite months ago.  However, when Friday arrived I was so nervous to drop her off with strangers for 48 hours.  We pulled up Friday after dinner and I questioned whether we were doing the right thing.  And then we walked into the front door of Jill's House and all of my fears were removed.  We had a warm greeting by members of the staff.  We said our goodbyes to Waverly and off she went.  A Dingo for the weekend in Pod 2.  We had to fill out some additional paperwork and met with the nurse to go over her care plan.  I was thoroughly impressed with the plan they put together for Waverly.  All of the information I had given them in the months previous during interviews and our tour, was all organized before me.  All of the pertinent information was there - bathroom routines, feeding issues, choking hazard, mobility issues, etc.  The staff had read over the information and were well versed in Waverly even before we arrived.  I was confident that she was going to be well taken care of.

Before we left for the weekend, one of the staff members handed me a photo in a magnet frame.  It was the staff of Jill's House wearing purple ribbons on MPS Awareness Day in honor of Waverly & Oliver.  How amazing is that?!?!

I was emailed a photo of Wavey late Friday night by the night nurse.  It was a picture of Waverly and one of her buddies with a message that she was doing well.  I also had a call the next day letting me know that she was having a wonderful time and really enjoyed the field trip to the horse farm.  Sunday night when we went to pick her up, we were so excited to be reunited.  Oliver and I were on the play ground waiting.  Waverly was brought into the lobby and ran into Matt's arms full of giggles and smiles. It was evident that she had a blast, but was very excited to see her family again.

I am so thankful that Waverly had the opportunity to have a weekend of adventure.  An experience that I never thought she would have.  A HUGE thank you to the staff at Jill's House, for taking such good care of my little girl.

You can read more about Jill's House HERE.  If possible, please consider giving a tax free donation to them, in honor of Waverly.

Sunday, June 5, 2011

King's Dominion

As part of Oliver's Make-a-Wish trip to Give Kids the World in January, he was given a special "passport" to visit hundreds of amusements parks throughout the country.  He loves rides and water parks so much, we thought this weekend was a perfect time to put the passport to use.  We arranged to visit King's Dominion, a great park just about an hour away from our house.  (Waverly was off at Jill's House.  I will write about her weekend later).

We had a fantastic day with just Oliver.  It was so much fun navigating the park with just him.  He loved the rides and quite often ran from the exit line back into the entrance.  His way of saying "let's do this again!!!".  Oliver is our water baby, so we spent half of the day in the tidal wave pool, lazy river ride and kids water play area.  We pizza and ice cream - 2 of his favorite food groups.  It was a day of fun with our little guy.  Here are a few photos I took on my phone.




Voting Again!

Team Sanfilippo is participating in another voting project to win money for research.  Please click HERE and cast your vote.  You have to have a facebook account to vote.  You can vote every day through June 11th.  If we are in the top 20, we move onto the next phase and I will be asking for your vote again.  Please help us secure this money, so we can fund research to find a cure.  Thank you!!

Friday, June 3, 2011

Waverly's Weekend Away


Waverly is at Jill's House this weekend.  I have written about JH previously - it is an incredible respite center for children with special needs.  I was hesitant about having her stay for 2 nights, but after dropping her off tonight I was reminded what an amazing place it is.  She is going to have a fantastic time!!

Thursday, June 2, 2011

Update

We spent the long holiday weekend in Ohio visiting Matt's family.  We had a great time seeing everyone.  We don't all get together very often, so it was special to have everyone in the same house for a bit.  Waverly and Oliver were wonderful travelers, although I am still trying to unpack and catch up on laundry.

No word on the house yet.  We did have to resign some paperwork, so someone is looking over the offer.  I have mentally moved into the house and I spend a lot of time visualizing life there.  I hope to be closing out the summer grilling out on the deck and watching the kids play in the backyard.

Waverly has had a few great days in a row.  We are still at a loss as to what it causing her tears, but it nice to have a reprieve.  We meet with orthopedics in 2 weeks and our PT may accompany us to the appointment.  It will be nice to have her support and input on the changes we have seen the past few months.