Avleigh's Journey

I come to this website frequently and read all my blogs on our journey these past two years. Those years were full of information on Avleigh, PCH and her progression along with regression. I’ve been sitting here on this same draft blog for a few weeks now unsure of how to approach, or better yet how to relay the activities and battles that we have been facing. I know in the past I would always say that just when we feel we have things under control, just when we get get settled in with the new changes there is always more to come. I’m typically a person of change. I accept change. I like change. But when it’s at the mercy of your baby girl change isn’t a good thing. These past few weeks have been, what her neurologist referred to as, “stable”. When I sit here and think about what that word means, I think about no regression, no more bad or ugly events. I think about peace of mind. The word stable does not describe what our Avleigh’s past few weeks have been. Yes, we have been able to avoid emergency rooms and she hasn’t been recently admitted into the hospital, but she is far from stable. She still is battling scary and dramatic events on a regular basis. Her seizures are continuing to increase even though we have been very aggressive in increasing her medicine to keep control of them. Just this week I watched her little body convulse as she laughed with such fear in her eyes. She has been sleeping much more during the days and less at night. She has been much more irritable and sometimes just angry. She is continuing to have complicated GI issues that no one is able to explain. The gaging, choking and retching have been steadily increasing even when she has nothing in her system. I’m just at a lost and I have no one to help. No one has answers.

The famous question, How’s Avleigh doing? Lately my answer has been a simple “I don’t know”. It’s the honest answer because I really don’t know what words to use to describe her. She does still smile, she will laugh and get excited. The problems is it’s getting harder and harder to get those smiles. Things she used to enjoy she no longer likes. She can no longer tolerate too many sounds at once. It will cause her to go into a panic attack that will take us several minutes to get her to calm down. So this change has no only affected Avleigh in making her less content, but it is also affected our hole family. We can no longer take her in environments that are loud or even somewhat hostile. It’s a small sacrifice for us to keep her content. We’re not sure how bad things will get before her journey is over. We don’t know how long we have with her. As a mom, I feel so helpless. She has so much going on and we can’t figure out what to do to make her more comfortable. This is why it has taken me so long to write another blog… I simply don’t know how to explain how she is doing. I’m worried and very emotional when I try to wrap my head around the things that are going on with her. For now all we can do is continue to pray. Pray for comfort for her and for us to have the ability to understand her needs. I will try my best to keep everyone more informed of her progress.