Meet the McNeil Family

Meet the McNeil Family

Sunday, August 17, 2014

Avoiding

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.


6 comments:

Anonymous said...

I have been following your blog for awhile now and have even commented a few times. After reading today's post, I felt the need to comment again. Please know that your family is in my prayers. I am so sorry for the pain you continually have to endure and the challenges you constantly have to face. In some ways, prayer seems to be "the least I can do," but I know that it is actually one of the best things I can do for you. So I will keep praying. And honestly? I don't know what to pray for most of the time, but I just keep asking God to help you. All of you. And I will continue to do that.

Julia said...

Prayers for strength and comfort for your entire family during this difficult transition period.

Anonymous said...

I, also, have been reading your blog for years now and keeping up with your beautiful children. I cannot imagine the pain seeing the spark gone from your sweet Waverly who seems to brighten the room wherever she goes. Prayers that the doctors can figure out why she is in pain, and help bring her spark back for all of you.
So happy that Oliver is better, but always sad for you and Matt when you watch them change. Always praying for your family.

Kathryn said...

I am so sorry to hear about Waverly, as well as the difficulties Oliver is having. I don't know how it must feel to see Waverly this way. You guys are in my prayers. I hope the doctors figure out what is up. <3

Anonymous said...

It seems you have several Anonymous Prayerful followers (myself included!)
Even when we do not reply to your posts, we're out here praying for you and your family.

Anonymous said...

When you feel up to it, I'd love to hear what's changed or not with Waverly's treatment and spirits. Thinking of you all often, NM