Meet the McNeil Family

Meet the McNeil Family

Sunday, August 17, 2014


It's been awhile. I have been avoiding the blog. A bit too down to want to write. Tonight my emotions are all bubbling up and it seemed like it was time to put pen to paper (or fingers to keys) and let it out. The blog truly is for me. It is therapeutic not only to write, but also to look back at all we have done and how much life has changed.

Oliver is doing much better. He has settled into his new medication and is calm once again. He has changed during this last bout of regression. He is quieter now - fewer loud shrieks of excitement during his favorite Mickey Mouse episodes. He also paces the house, which I suppose is excellent exercise for our little home body. He has been enjoying summer. One week home and the next at Jill's House for day camp - that has been our routine.

Waverly has had a very difficult few weeks. It began with some irritability, which is unusual for Waverly but we didn't think much of it. Eventually it turned to crying during the day and being unable to settle her. Even at day camp, the staff was having a difficult time engaging her and keeping her content. Then the crying during the night came and she had a few nights were she didn't sleep at night long. She has been restless, agitated and unhappy. For those of you who know Waverly, she is smily and easy going almost all of the time. 

We had appointments last week with some of her specialists and they all seem stumped. They see the changes, but are unable to identify the cause. Thankfully they are unwilling to simply say it is Sanfilippo Syndrome and are working on helping us find a cause. However thus far we are without one. They did prescribe a new medication to calm her. It is effective, but in taking the drug she seems vacant.

We are now without a few of our doctors for the next few weeks. I guess the end of August is a big doctor vacation time. This has left us at a stand still and unsure how we should proceed.

Waverly Mae has lost her spark and we hope it will return.