Avleigh's Journey

I’ve broken the news about our possible miracle with the stem cell treatment, but what happens if we decide it’s not the bet plan of action? Or what if we go through with it and it doesn’t work? We are continuing to work through her follow-ups and communication with her medical team as if the stem cell treatment isn’t an option. We have to keep Avleigh in our best interest to ensure we provide her with the best care possible and that means keeping our eyes open to different paths of treatment.

Last year we were in the process of scheduling two surgeries to help with her seizures/behavior and her muscles when she battled cold after cold causing regression. When that happened we decided to not pursue any more procedures but to keep her as content as possible. Through the later part of the year she regained her strength and is now back to her normal happy self. With this, we began revisiting the options to improve her quality of life with these procedures.

The VNS placement is the one that would possible allow us to take her off of her seizure medicine. This would provide benefits of keeping control of her seizures and improve behavior, making her happier. The seizure medicine is one of those drugs that are damned if you do, damed if you don’t. She needs it, but it does affect her moods. Once she’s one a dose for some time, she does adjust to it, thankfully. Any missed doses or increases to that medicine and she’s just not herself. She becomes angry, tired and very irritable. This would keep this balanced and controlled by a device (similar to a pace maker) that is in her chest to shock the nerves back into a normal rhythm when it senses seizure activity.

Now lets talk muscles. A year and a half ago she had her hip lengthening surgery which has shown much improvement. We are able to provide better care for her and her hips are under a lot less pressure. That’s just her hips… her muscles are tight everywhere! She’s on a drug called Baclofen that helps to relax her muscles and settle her spasticity. The issue with Baclofen is that it’s an “oral” medication that travels through her system affecting her entire body, not just the muscles. She needs to be on a high dose for it to provide benefit to the muscles but then it affects her GI system and head/trunk control in a negative way. The placement of a Baclofen pump would put the medicine directly into the spine which would bypass her other systems. We are hoping that this option will help her to regain functionality of her motility and head/trunk control.

Of course with the possibility of the stem cell treatments we would not go forward with these procedures as they may not be needed if the treatments actually work. So we will have all our ducks in a row and be prepared for whichever option we feel is best once we have all of our resources together.