Meet the McNeil Family

Meet the McNeil Family

Friday, January 31, 2014

Goodbye January

I am currently staring at three pieces of medical equipment in our family room. There is another in our van, one at school, two in our guest room and four in bedrooms. There is a part of me that is so grateful for these items. We are incredibly fortunate to have insurance that recognizes the benefit of standers and walkers, wheelchairs and Sleep Safe beds. I am thankful we are in the midst of a bathroom remodel so the kids can bathe safely in a rolling shower chair. And I love having a wheelchair van that keeps the kids safe and secure, while saving my back from constant lifting.

This has been an exhausting month both physically and emotionally. So much change occurring in such a short amount of time. As the changes arrive and we adjust to our new normal (again), reality settles in and a new phase arrives.

Wednesday, January 29, 2014

Waverly's New Wheelchair

It took so much time and energy to get this piece of equipment, but it has finally arrived. Yesterday we were able to pick up Waverly's new wheelchair. It is a Quickie Iris Tilt. You may not be able to tell from this picture, but some of the frame is purple, while the rest is black and gray. That huge padded seat is memory foam, making for a plush ride. It sits straight up as shown and can also tilt back to al most laying position for when/if she falls asleep. There is a great tray so she can play with toys and books easily as she rolls around.

It is most definitely not going to be confused as a pediatric stroller. We have entered a new phase. There is no hiding Sanfilippo Syndrome with this ride. However, it is going to serve her well. It allows us the freedom to add on items as she continues to decline that will accommodate the changes.

Once again life looks different for our family. We are adapting to new equipment. Adjusting to our new normal. 

Now to find the perfect fashionable bag for her chair...

Bathroom Remodel

Another big change for us is a complete bathroom remodel for the kids. Right now their bathroom is down to the studs and the concrete floor is all busted up. Gone is this:

In its place will be a large walk in (roll in) curbless tiled shower with glass doors. The toilet will be moved, vanity moved, new flooring, new lighting and fixtures. We are also installing a pocket door to save space and allow our rolling shower chair to maneuver more easily. It is going to be gorgeous!! And even better than that it is going to be much more functional for the kids' needs. We will not have to lift the kids into and out of a bathtub anymore. Hooray for another back saving update!!

Never Pass Up A Carousel

We took advantage of a lovely day to head into the city for a walk on the National Mall. As usual, we couldn't pass up a ride on the carousel. The picture doesn't convey it, but Oliver was all smiles and giggles as he went around.

Our Van Has Arrived

Typically January is a slow month. The winter blue set in after the holidays and we count down the days until spring arrives. Not this year. We have been so incredibly busy, which is made obvious by my lack of blog entries recently.

In big news our new handicap accessible van was delivered a few weeks ago. The bottom picture gives the clearest idea of how the van works. The ramp (folded up at the back of the van) unfolds from the trunk. A wheelchair them rolls up the ramp and sits between the 2 captain chairs in what is typically the middle row of a minivan. A second wheelchair can sit behind it. Wavey can then ride in her wheelchair, eliminating the back breaking transfer into and out of her wheelchair. Hooray!! (Her new wheelchair wasn't here in time, so Wavey is sitting in the regular seat still.)

I never thought I would be so excited about a wheelchair accessible vehicle, but I am beyond thrilled. This is a life change for our family.

Friday, January 10, 2014

Happy 7th Birthday, Oliver!!

Oliver is 7 years old. Time is flying by much too quickly. We had a little birthday party for him over the holidays with my family. He loves cake and ice cream, so we opted for a delicious ice cream cake from Carvel. We say "Happy Birthday" - twice - because Waverly loves that song so much. Oliver just wanted to eat.

My sweet boy is changing. I am often so focused on Waverly's changes because they are new and unknown. With Oliver we are aware of what will happen next, should he follow his sister's trajectory. However every so often I see the differences. He is still using a spoon to eat, but he is becoming less effective. He doesn't dig the spoon in anymore, so most of the time he is bringing it empty to his mouth. We give him time in order to maintain the skill and the motor coordination, but then we take over so he can actually get some food. He is crawling over to furniture now in order to pull himself up to a standing position. And his legs are growing increasingly stiff, so his walking is a bit more uncoordinated.

He has the sweetest of spirits. Waverly has always been social and quick to warm up to any new environment. She longs for personal contact and lights up well people speak to her. Oliver is much more subdued. He is our home body. Each time we walk through our front door he squeals and runs around, happy to be home. He is happiest watching 'Mickey Mouse Clubhouse" all day long while running around the house holding his favorite Mickey Mouse footballs. Life is simple for him. Eating bring ultimate pleasure and we try to allow him his favorites as often as possible given he will soon no longer be able to eat by mouth. He is sometimes misunderstood. He doesn't give great eye contact or interact with his peers. Yet he is quick to hold my hand, loves to snuggle on the couch, and quickly falls asleep with a head scratch and back rub. I love him completely.

Happy 7th Birthday, Oliver!!

Wednesday, January 1, 2014


I took Waverly to see "Frozen". It is the first movie we have seen in a theatre together for about 2 years. She loved it!! She sat quietly in her wheelchair the entire time. She was a bit startled by the volume at the beginning, but grew more comfortable once the movie started. She cracked up - usually at the totally inappropriate times when the characters were in danger or there was a heartfelt moment on the screen. She has always done that. It was a great few hours of normalcy and mother/daughter bonding. We have to do it again soon.