Meet the McNeil Family

Meet the McNeil Family

Sunday, December 30, 2012

Happy Birthday, Oliver!!

My sweet little boy turned 6 years old today. As usual, his birthday seems to get lost in the holiday shuffle. No school chums to celebrate with over cupcakes, not at home for our typical celebration spots. He doesn't mind in the slightest and is happy to simply watch some "Mickey Mouse Clubhouse" and have ice cream.

Happy Birthday, sweet Oliver!!! In a few short days we will celebrate YOU at Disney World.

Tuesday, December 25, 2012

Merry Christmas!!

Christmas has been a very difficult holiday for me since Waverly & Oliver were diagnosed almost 5 years ago. This year I was finally able to put aside all of my expectations and just relax. Christmas Eve was just like any other night, except we had a delicious evening of appetizers. Christmas morning we all piled into our bed and watched cartoons under the covers. I made some yummy monkey bread for breakfast. Instead of trying to get the kids interested in wrapped presents under the tree, I unboxed the few gifts and had them out ready for play in the family room. We ended the day hosting my cousin and her family for dinner.

The kids are nestled all snug in their beds. The puppy is snoring on the kitchen floor. I keep smiling. Christmas never looks like the movie version. And our Christmas day was much different than all of my facebook friends' walls filled with photos of kids tearing into presents. Yet we were all together. That is what matters.

Sunday, December 23, 2012

Jill's House Got a New Client

Monday was a day we have all been waiting for. Oliver was *finally* able to stay at Jill's House. Since he turns 6 this month, he is eligible. He has been desperate to get through their locked doors and discover the playground, pool and bouncy houses. The day finally arrived. JH staff arrived at their school at the end of the day to pick up the kids for their school overnight. Oliver was thrilled to finally board the bus and easily climbed up into the front row. I couldn't believe how easily he separated from me, off on his own adventure. I heard wonderful reports from the JH staff. He had a fabulous time and fell asleep the second his head his pillow.

Matt and I spent part of the evening doing the interview with NPR. We then grabbed a quick dinner and headed home. We were both asleep early and excited to sleep the entire night without interruption.

Local NPR Interview

You may remember the wonderful interview that our local NPR station did last spring. The show "Metro Connection" found out about Matt's book and wanted to talk with him about our story. You can still hear it by clicking HERE.

The reporter wanted to follow up with our family for her end of the year show. We met her at Jill's House last week, on a night both Waverly & Oliver were staying there. We chatted about all of the changes over the past 6 months and updated her on our family. Once again she put together and beautiful interview which aired in the DC area Friday and Saturday. You can listen HERE.

Saturday, December 15, 2012

De-Grinching

I am sad. Deeply sad. I have cried every day for the past few weeks sad. It is that time of year. Birthdays and holidays. This time of year always points out how quickly time has flown by and just how different my life looks from what I had hoped. I have tried different tactics to get through this season. I have tried my best to pretend and have the "perfect" storybook Christmas. This always ends with disappointment. We left town last year which worked fairly well. 

This year I am determined to be as realistic as possible. Waverly and Oliver have no concept of Christmas day being special. There is no anticipation of presents left by Santa, no waking early to rush to see what is under the tree. So I am embracing what they do love. Twinkling lights in every room. A few gifts, purchased in the toddler section. I am going to make a delicious breakfast, because Oliver's love language is food. I see lots of Mickey Mouse Clubhouse episodes being watched in our pjs and maybe a walk around the neighborhood with Watson.

I keep having to remind myself of these realistic expectations. Disappointment and sadness will still creep in. However I realized that Sanfilippo cannot take my Christmas spirit away. It tried, but I refuse to allow it. Waverly and Oliver's little faces staring at the shining Christmas lights were just the reminder I needed.

Friday, December 14, 2012

Mommy Son Trip


Oliver and I flew to Minneapolis last week for his final visit in the Natural History Study for MPS III A. (Wavey was a bit under the weather, so she will go in the spring.) We always love these trips. It feels great to be doing something - anything to further Sanfilippo research. Plus we are able to see some old friends, ride the carousel at the Mall of America and enjoy the city. Oliver was a wonderful little traveler. It was actually a lot of fun to have an adventure with him.

The first day is filled with developmental assessments. Since our last visit one year ago, he has lost about 7 months of cognitive development. He stayed about the same in his gross motor skills, but we saw the most loss in fine motor. The results were expected, but that certainly does not make it easy to hear.

He did well with all of the medical testing done under general anesthesia. The only issue was he gets so nauseous when he wakes up. We actually ended up in the ER that night, for another IV bag of fluid and some additional medication to help stop the vomiting.

I am so glad Oliver was able to participate in the Natural History Study. I hope the information he provided over our 4 visits will give future doctors and researchers a much better understanding of the syndrome and how best to treat it. It is sad that 2 years later, we don't feel that much closer to a cure or effective form of treatment. I no longer believe Waverly or Oliver will benefit from the research. However it is my hope that future families will not have to watch their children regress and die much too early, thanks in part to Waverly & Oliver's participation.

Christmas Spirit


We are getting into the Christmas spirit here in Virginia. The mantel has been decorated, stockings hung, and puppy resting comfortably on the hearth. (It is his new favorite place to sit.) We are so thankful to have a home to celebrate the holidays this year.