Avleigh's Journey

I think most people can agree that Avleigh is a very happy child. It’s not often that you will see her upset. When she cries it’s either a way of her communicating that she doesn’t want something, she’s tired, she’s hungry or she’s hurting. Through time those closest in her life have learned her communications and know how to make her happy again before she gets too upset. And luckily she has a very high tolerance for pain. When you look on our newsfeed or at Avleigh’s Journey, you will see mostly smiles and good things about her life experience. Here and there we’ll post information about her doctors visits and a few updates on her health condition. We try our hardest for us, for her and for her supporters to remain positive. We want to see and remember the best times she’s had. 

The part that I’m not always so open about is her actual health. Yes, we see her beginning to gain strength back that she hasn’t had in months. She finally has gained some weight since we’ve changed her formula. She even took lots of steps in her gait trainer while bearing at least 50% of her weight. So when I sit here thinking about her and how she’s going I can’t help but see what’s going on inside. This horrible disease is becoming more and more aggressive. Not physically but internally. You see, the reason we had to switch her formula is because she could no longer handle a basic formula. She needed one that was already broken down so that her stomach could handle passing it through her little body. Without it being broken down she had increased reflux, pain, gas and irritability. It wasn’t breaking down enough to give her body the nutrients it needed. Over these past few weeks she slowly began to have less and less toleration for her puréed foods. It started to where she would gag while we were trying to feed her. She got to a point where she would refuse to open her mouth even for the things she always used to like. If we were able to get the foods in her she would immediately vomit and all the effort we put in to get her to eat was not only wasted but it made her feel even worse. So now the majority of her diet is formula. But that wasn’t just an easy fix. You see without insurance approving her to get a feeding pump, we have to bolus her feeds. That means we have to pour her formula in a 60 cc syringe and allow gravity to pull the formula down to go in her tummy. The bad thing about this is the speed. Too much formula at one time is also too much for her little body. So, we are now trying gravity feeding bags that has a drip similar to an IV drip. She’ll still get her formula as one serving but it’s at a little slower pace. But we’re still having increased reflux. She’ll vomit clear sour nastiness at least 2-3 times a day. 

So how did all of this happen to her so quickly. Just a year ago we weren’t even considering a tube. She was eating solid food, she was drinking from a straw sippy cup, she didn’t even have comstipation issues yet. How did her GI tract get so poor in such little time and will we get control to slow it down. 

Each night when I rock her to sleep she stares at me with those beautiful brown eyes. She has so much trust in me. I want to fix her so bad but I know this is out of my hands. So we pray…