Meet the McNeil Family

Meet the McNeil Family

Wednesday, June 26, 2013

Pain

Waverly is starting to cry again. A lot. It is horrible.

As many of you know, Wavey has gone through periods of crying in the past. We have had MRIs, X-Rays, blood work, urine analysis, etc to try to find a reason. Each time we find some abnormalities, but nothing that the specialists seem to identify as the root cause. Eventually the crying subsides and we continue to move forward.

A few weeks ago the cry began once again. We try some things at home - tylenol or ibuprofen for pain, adjusting her positioning in her chairs and bed, more stretching and massage. Nothing worked. I called her new Pain & Palliative Care doctor (he is wonderful). He increased the Rx pain medication she is taking and for the first few days we thought it was working. However, the crying is returning - most especially in the afternoons and evenings. Crying with big wet tears, bucking in her seat and often the inability to pacify her.

I have grown tired to trying to find a cause. I simply want to treat the obvious pain and allow her to be happy & comfortable once again.

I am waiting for our geneticist to call so we can discuss how we can move forward.

9 comments:

Julia said...

I am so sorry! As a parent, I know how hard it is to watch your child in pain. I can only imagine how horrible it must be to know they are in pain and have no way for them to communicate about it with you. Praying for relief for sweet Wavey and for you!

Joanne said...

I am so sorry Shannon. When Sasha was the age Waverly is now (is Waverly about 10?), we went through periods of this and it was absolutely awful. After lots of doctors visits we adjudicated it was likely CNS degeneration of some kind due to Sanfilippo progressing. We'll never know the true answer but we felt in her case it was more neurological. I hope your geneticist has some helpful insight. I'll be eager to hear what those thoughts are. Many hugs to you guys. Joanne

Anonymous said...

Thinking of you and your breaking heart. love nm

Becky Thurmond said...

I'm so sorry that she is suffering like this. I hope that relief and a reason come very soon. Sending love and continued prayers to you and Wavey.

Kamarah said...

Shan, I'm so sorry. I remember when we were visiting and she started crying just a tiny little bit...and I felt so bad for her. In those moments, it was brief and temporary. I can't imagine the difficulty of seeing her cry regularly and not be able to sooth her. Praying for you, friend. You are an amazing mom to her and Oliver. :)

Kathryn said...

It must be so hard to watch your child crying....I'm so sorry you have to go through that.

Anonymous said...

Praying for you,
Jess

karen said...

I hope you find something to help her soon!

Meg said...

I can't imagine how awful it is to see her cry like that every day knowing that you can do nothing to soothe her. So sorry she (and your family) are having to go through this. :( Hoping for something that can ease her pain very soon.