Meet the McNeil Family

Meet the McNeil Family

Sunday, August 23, 2015

The Beast That is Dystonia

Waverly has had a difficult week. 

On Tuesday afternoon we picked up her back brace. She looks fantastic in it and seems to grow 4 inches whilst wearing it. She's sits straight and even her color seems to improve. Her orthotist is fantastic and even took the time to help me adjust her wheelchair to accommodate the brace.

Here she is looking all superheroish. Super Wavey!

On Wednesday, she started having "episodes". Initially I thought they were some sort of seizure. She had 10 of them that day. Convulsing, contorting, and lots of crying. She seemed so aware of what was happening and it scared her. This did not seem typical of a seizure. So I started videoing her over the next few days. I sent the videos off to her neurologist (who is on vacation for 3 weeks) and her geneticist (who is the most fantastic doctor and responded within minutes). I also send the videos to some of my go to moms. The response was fairly consistent - Dystonia.

I have heard other parents who have children with Sanfilippo talk about the horrible beast that is Dystonia, but I never really took the time to learn about it. Ignorance is bliss when I comes to dealing with this disease. Take it as it comes.

After talking with a few friends, I started googling and reading. It is definitely the culprit. Fortunately, she has already been on a medication that can help kids with Dystonia and I have only been giving her a half dose. I went up to the full dose and today she has yet to have an episode. Her geneticist is arranging for us to meet with a neurologist who specializes in movement disorders.

A new phase.

In the midst of these episodes on Wednesday, I was about to book a very special getaway for Waverly and I. Matt has a conference in London next month, so we were going to tag along and explore some of our old haunts. I arranged care for Oliver and everything was in place. I just had to purchase the tickets. Sadly, we decided it wasn't the best time to travel with her. My heart wants to go, visit some of our favorite places from our time living in St Johns Wood, and see old friends. My gut kept telling me that this wasn't the right time.

I'm terribly sad to think I may never visit London again with Wavey.

Sunday, August 2, 2015

Out of the Comfort Zone

For those of you who remember, I had a dream a few months ago about Waverly's death. I wrote about it here without much detail, but one of the lessons learned from the nightmare was wanting to have some plans in place. This has definitely been out of Matt's comfort zone. (However, most planning falls out of his purview.) He has been incredibly supportive and we have been venturing into the funeral talk occasionally.

We had the opportunity to meet with clergy from the church we recently started attending. We wanted to introduce ourselves and also ask some difficult questions. They walked us through a service and I was struck by the beauty in the liturgy surrounding this grief filled ceremony. I was overcome with a sense of profound peace knowing what words will be said. They fully supported our choices to plan as much or as little ahead of time. And the rector said one of the most beautiful things to me, "this is the final thing you will do for your children". She acknowledged my deep love and commitment to honor my children well in their passing.


I know that some will think it odd that I found comfort in this. I know others will fully identify. As for me, I am so thankful to have a husband and church that support me in the process.