Day 18 - NG tube free - struggling!

Sorry it has taken me so long to come and update what is happening with Faith but my days have been a great struggle, emotionally and physically. Some days just not feeling like they will end. This is where we are up too. We have been going up and down in volume of blended diet and were progressing well and a few days a go we hit a real low where she refused food for 24hours straight. It was hard being patient but we had to, it is after all Faith's choice. With Faith's intake of food crazy to say the least we get up many times a night sometimes she will eat huge amounts other times she refuses. We have also had a trip to Brisbane to get bigger AFO's and leg wraps and also had a catch up with the speech pathologist. 

One of our biggest challenges over the last week has been getting Faith to take her medications. When she doesn't take them it does set her back and make it harder for her to move forward. As of yesterday we have solved that problem, previously we couldn't get Faith to take her medications directly into her mouth we had to disguise it in her food. Now she has decided she will take it straight out of the syringe so that is one less burden to carry and a wonderful relief knowing she is getting the right dose of gabapentin and keppra.

Another challenge we are facing as of today is that she has a UTI which explains her refusing food the last few days and her extreme irritability. It always seems to happen on the weekend. Luckily we have some antibiotics on hand just in case. At least we know what was causing it but it doesn't make it any easier when she refuses food. I just see her thin body and my heart aches and my mind struggles to keep going but knowing that she is so much better since coming off the NG tube but the process of sorting this all out it far and above harder than I imagined. Thankfully she is taking her antibiotic straight in her mouth and being very brave about it. I love when she smiles or reaches out for me, my heart leaps for joy. So, that is where we are up too, still offering and offering and doing our very best to be patient with Faith and let her get there when she is ready. She will get there it is just a bumpy ride until we do.