Avleigh's Journey

It’s the time of year that we all should be cherishing each other, giving to others and being cheerful. It’s time to sit back and truly take in what the holiday season is meant to be about… celebration of life. We love each day very fast day to day, often forgetting or running out of time to enjoy life and spend it with the people that mean the most to us. It’s about family and friends. Being there for the ones we love. It’s not about physical gifts; it’s about gifting from the heart whether it’s giving your time to someone that needs it or doing something special just to see the smile on someone’s face. This Christmas is hitting me hard on appreciating the season. I’m not worrying if I forgot to do something to make Christmas perfect. As long as my little family is together and happy is all that matters.

Most know about Avleigh’s recent motility test results. Her system is continuing to prove those test results by having more symptoms to support it. She was doing really well on the new GJ tube. She even had a few dry burps. A few days ago she began showing some discomfort and started having reflux again. Since she has the new tube, I was able to vent her tummy while she was still being fed through the intestines. When we did the vent she had a large volume of bile that was backing up into her stomach. Good thing is we were able to get it out and make her feel comfortable again. We are now venting her more often and continuing to drain bile from the stomach. This isn’t unusual with the results of her test. We are on alert to keep an eye on the volume and bring her into the ER if she continues with any discomfort or pain.

We also met with genetics this week. They assured me that I’m taking the best care of her that’s possible. They feel that her mitochondrial cocktail that she was on along with her selenium supplement isn’t giving her benefit. We’ve taken her off of that and put her on a basic multivitamin. Our instructions are to keep her away from sick people. Everyone keeps telling me thing at every appointment. I mean we knew we had to before because she can’t fight off illness like a normal child, but now with her motility state it’s even more important. Infections can cause more damage and potentially shut her motility down.

So this Christmas I’m holding my babies tight. Giving them my all and trying to get them to have the best memories possible. Keeping Avleigh happy is out main goal. We also want to give them as many chances possible to build their relationship and give Alyssa as many great memories of her sister possible. Doing this in itself will make Avleigh happy, she loves her sister so much. Merry Christmas to all her supporters and please continue to pray for our little angel. Take her journey as a life lesson and forget about the burnt dish or the gift that didn’t come in in time. It’s the thoughts and memories that mean the most.