Faith is still tubeless, yay! And her pattern seems to be, eat more one day and eat less the next but slowly increasing in each days volumes so overall we are seeing a good volume improvement. But some of biggest challenges is that eating causes Faith to tire quickly but she is getting stronger. We had to cease weaning her medication, gabapentin as she was getting quite a lot of withdrawals from it and it was and is hindering her moving forward. The withdrawals appear to be change in temperature, irritability, and not being able to sleep at times. So, apart from what is going on with her body from having no NG tube, the poor little girl has to combat the gabapentin withdrawals. Faith hasn't eaten a lot of food orally in over a year and so the process of eating is tiring her greatly so she is sleeping a lot and at times over tired so not sleeping making it harder for her to cope. It is a crazy combination at times.
Last night was particularly challenging with Faith waking for food at 11pm, 2am, 5am etc. So it has been a long day for us already. But she must have turned a corner as she is sleeping a lot more today in comparison to the last few days and of course in the back of our mind we have other causes of varying symptoms like shunt malfunction but her fontanelles are still soft and she isn't vomiting so I think it is just her adjusting to her new found identity of being a oral eater. It is a emotional roller coaster and I do long for our once 'normal routine' but less the NG tube so I look forward to finding another new 'normality' again.
We are still in touch with Faith's speech pathologist and it is wonderful to have her there if we need to brainstorm anything. Though it has only been a 11 days since we took Faith's NG tube out it feels like months have passed since then. I keep reading the quotes and sayings for encouragement and perseverance and find them a good reminder of the bigger picture and ways to handle various situations regarding Faith's approach to eating food orally, wow, she is really eating orally. Yay!
I think we were all feeling a bit flat today after sleep deprivation and working so hard to make this work and it is working. I see Faith's tummy popping out more and I love it. A friend dropping over this morning, a mum with two little ones and what a great blessing it was, yes, she is sleep deprived too so when our minds wander we both don't really notice cause we are on the same page. It was good just talking about stuff and hearing about her life and what is happening as sometimes it can be hard when we don't have a chance to share others lives it makes one feel refreshed sharing in someone's else's life. She even brought us a home made bacon and egg pie and some eggs. How lovely. Then, later in our day we are invited to another friend's house for afternoon tea. My friend's little one had a NG tube and food aversion a while a go so she understands what we are going through. While we celebrated how Faith can eat now and as I was preparing the food she said don't be upset if she doesn't eat as much as she usually does as when little people go out they get distracted and don't eat as much. And that is what happened, Faith had a small snack and wanted to continue being involved with the other kids. Another special things happened that we haven't seen in a week or more, Faith started interacting with the other little kids, she laughed and watched and had so much fun watching them play and entertain her. Our little happy girl is slowly finding her 'normality' again. Thank you God for friends!