Avleigh's Journey

I read an article this week that was shared with our PCH group that really got me thinking. It’s about a toddler that had a glow stick straight out of the pack. An older child took the glow stick from the toddler. Just as the mom was about to fuss the older child cracked the glow stick and handed it back to the toddler. The child said to the toddler “I had to break it so you could get the full effect”. The article went into detail over an analogy that god does the same for us to show us what we were created for. “You had to go through this so you could fulfill your purpose”. This hits so close to home because broken is exactly how I feel. Don’t get me wrong; I’m very grateful for all I have. I’ve never been more grateful than I have been in these last few years and it continues to grow as we continue our journey with our Avleigh girl. I’m broken because her health is quickly declining and there’s absolutely nothing I can do about it. She’s my baby, she’s my world.

So how is Avleigh? She still is suffering from reflux. She’ll mostly handle it well, but often chokes or has spit up that follows. Thankfully insurance finally approved her new GJ button. This is a very simple procedure where we go to radiology and they place the catheter part of the button in the small intestines. She gets this placed on Friday and hopefully it will help reduce the reflux.

We have been waiting sometime for the line-up and approval of a baclofen pump trial. She is on a maximum dose of her muscle relaxer, baclofen, and she still is suffering from tight muscles. This pump would give the benefit of her medicine going directly to where it’s needed instead of it going through her whole system (pill form that we have to dissolve to get it through her tube). So in order for her to qualify for this pump, she has to do a trial that will do a “test” of how her muscles will react with this type of treatment. This trial is scheduled for Tuesday of next week. She will receive Physical Therapy to evaluate her abilities before the procedure. Then she will have minimal sedation (no anesthesia) and they will perform a lumbar puncture to inject the baclofen in the areas they think she needs in order to help her upper and lower extremities without affecting her head or trunk control. We will then wait about 4 hours and then do another Physical Therapy evaluation. The results will be measured and they will decide if the procedure is right for her. If they think she’s a candidate then she’ll be scheduled to have the pump placed.

Avleigh has some major things happening right now. Lots of thoughts on ways to make her more comfortable and to give her the absolute best quality of life. These decisions we make for her are very hard. Life is hard. I just pray we continue to make the best decisions that will help us meet our ultimate goal… making Avleigh happy.