Avleigh's Journey

Avleigh is such a beautiful little girl. Majority of the time she flashes her beautiful smile showing the world how happy she is. It’s hard to imagine the things that are really going on inside her little body. The harsh damage that this disease is doing to her is so hard to comprehend when you see her face. She appears full of life, happy, pain free. Truth of the matter is she is just that strong and determined to live a good life. She has an unbelievable tolerance for pain and continues to enjoy the simplest of things. If she’s fussy with gas pains or muscle spasms, no worries, pull out some bubbles! Bubbles can distract her from almost anything. The truth is that her disease is continuing to progress and we have no clue exactly how this changes her prognosis. Her muscles are continuing to grow tighter, causing her to have less and less control of the little voluntary movements that she had. Her GI system, luckily has been stable, but has so much damage that was already done that it could take just one bad cold to shut it down. Again, the unknown…

As her mom, I continue to get my strength from watching her in how she handles all this. She will go from doctors office to doctors office, let them pick and pry her with very little fussing. I guess you could say that she’s used to it by now. That’s not so easy for me. It very hard to watch your baby have to go through so much. After each doctors visit, I sit and contemplate how to break down the information that is given to us in a way that our loved ones can understand. It’s not just a matter of explaining medical terms, but the matter that she is so unique and complicated that we continue to have conversations that go in circles. We can do this if…. she may respond to this treatment if this… it continues on and on. When you don’t have a clear image or know exactly what it all means for her or even if it will apply, you begin to just absorb it and wait until enough happens to where it does begin to make sense. I’ve probably lost you, right? This is exactly why I’ve been waiting to give everyone an update on her. It’s been so complicated for so long that I don’t even know where to begin. When I’m asked how Avleigh is doing, it’s so hard to answer that question. She’s doing well considering…

I will say this… she is healthy! She has not had an illness in some time and we hope we can keep it that way. She’s happy! Everyone knows that is our #1 goal. So from here on I will do my best to keep her followers, supporters, informed on her PCH journey, but most importantly I’m trying to refocus. We have always kept her best interest in mind and will continue to do whatever it takes to give her the best quality of life possible. The focus that I’m speaking of is from me. I’m changing my gears and doing all I can to focus my energy on her rather than her disease. It’s very easy as her primary care giver to get so wrapped up in her medical world that I sometimes lose focus on what exactly I’m fighting for. Her world is such a complicated world but yet her life style is quite simple. Now, I can’t give up on the medical part because that would mean giving up on her. I’m definitely not ready for that. I’m referring to our daily activities. One thing we started was allowing her to enroll in pre-k. It was a very hard decision but she is absolutely loving it! These are the types of things that I will mention more of on her blog and Facebook page. Less medical, more Avleigh!