Love for Gabi

June is the month of Batten disease awareness, so to raise it I’ve made Facebook campaign for Gabi. Sending love from all around the world. You can’t cure this terrible disease, you can’t help her, you can’t give her childhood back or give her chance to live a normal life, but only thing you can do is send positive vibes and love and live day by day trying to make the most of it. So send love to her💖

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Feeding tube

It’ s been a year since Gabi has trouble with eating and drinking. Some days are better and some are the worse, but basically she can’t eat or drink like she use to. It is causing so much stress for us and for her also. She lost some weight so I keep pushing and trying to give her more and more food, but it takes so much time to do that. Some days it feels like feeding is something that I am doing hole day. One meal approximately takes 45 minutes and drinking one cup of liquid around half an hour, on bad days even more.

Regardless to all that I was so stubborn about accepting that she needs PEG surgery. Like everything in this disease, losing every function you feel some kind of guilt. Maybe you didn’t try enough, maybe you are considering this just to make it easy for you not her, maybe it will make things worse, maybe that means she is closer to final stage and so on… It is so easy to find some quilt and it is so easy not to have courage and put your feeling aside and do what is best for her.

Last few months I think I definitely changed. I saw so many parents struggling with same problems as I, with same feelings, ripping themselves apart and that’s not helping anybody… especially not the children…

This disease is such an emotional rollercoaster, but I have decided to find my own path to struggle with it. I’ve decided to put my emotions aside when it comes to making decisions. I won’t let my feelings get between what’s best for her. I won’t let my daughter loses weight and struggle eating just because I can’t handle another lost battle.

So, today we had an appointment for PEG surgery.
Doctor was great. He explained everything I wanted to know, answer every question and took time to repeat it as many times I’ve needed. We scheduled operation on 10th August and instead of being down or worried I am actually looking forward to it. I know that my daughter will benefit from it and I can’t wait to see her happy and satisfied with getting enough food and liquid. We will gain something from it not lose. Disease is the one who is taking things from her but not medical procedures that are working on making hers life quality better. This is opportunity for making things better for her, so cheers to that!