Meet the McNeil Family

Meet the McNeil Family

Thursday, May 22, 2014

My Ollie-Bear

Oliver. Sweet Ollie is having a such a difficult time these last few weeks. We have seen this pattern of behavior before. The whimpers and whines begin late in the day before bed and slowly they begin to take over the entire day. Yesterday I had to pick him up from school because he was upset and they thought he was ill. Fortunately we had an appointment with his allergist this morning and she gave him a good looking over. All is well. Unfortunately this is just Sanfilippo rearing its ugly head and reminding me that it is going to begin impacting Oliver in a more significant way.

Anyone who meets Ollie is well aware that he has severe developmental delays. However, in my eyes, compared to Waverly, he is my healthy little boy. He can walk on his own, maneuver a playground, he comes when I call his name, feeds himself using a straw cup & spoon. He is my independent one. And I rely on his independence greatly. His ability to walk allows me to take the kids out by myself. Once he is confined to a wheelchair, our world is going to shrink even more drastically than it already is. There are no double wheelchairs. Without an extra hand, we will have to stay home.

It is so painful to watch my son cry, so upset by *something* and I am helpless to comfort him. These anxiety episodes are very common in children with Sanfilippo. Now to see if we can find something that can bring him some kind of relief. I have a call in to a few of our doctors and some other moms have provided some excellent advice. 

For now I snuggle him when he allows me the honor and hope for this phase to pass.

2 comments:

Rebecca A said...

Hi
I saw your video today and I was really touched by all that you and your husband do for your children each day.
I was thinking about your idea about a double wheelchair and I put in a call with Joni and Friends. Maybe they know of something like a double wheelchair and can get you in touch with someone. It never hurts to try. I will let you know what they say.

Thinking of you today,

Rebecca

Pamela said...

I'm so sorry :( Just wanted to let you know that I am reading and your family is still in my thoughts and prayers.