|Posted on June 13, 2012 at 8:05 AM|
Well, we have passed the one year mark and what a year it has been! I've got to say, in regards to the feeding tube it has been a year of many highs and not many lows to report. Still our best decision ever!! Bella is now over 25kg so that is 8kg is one year - she looks so healthy now and is loving her new look (she had become quite self-conscience about being too skinny) now she gets lots of lovely compliments which is a nice change to people whispering behind her back (gee, she's pale, she doesn't look well, she's thin isn't she?)
In the last couple of months we have introduced tube feeding at school also. This was arranged with the district school registered nurse who trained a teacher aide to take on this task each day. She’s doing a fantastic job! It was a bit of a hurdle at the start as we had to get the location, timing, equipment, practice etc. all sorted but the procedure is all in place now and working really well. Bella was also quick to notice a change in her energy levels at school - play time is now for playing! They feed her during school time, just before lunch break so she doesn't miss out being with her friends. She doesn't eat any food at school, instead she gets one 200ml tube feed via bolus syringe each day at 12.30pm, she does eat a small dinner at night and is still continuous tube fed 1ltr Neocate Advance 10 hours per night via the infinity pump.
Our next step is next Wednesday she is scheduled to have her first BARD button change, via endoscopy. This should just be a day surgery and the plan is to be able to start feeds again and go home the same day. She's a bit anxious about it being her first button change, and it has also been 18 months since last endoscopy so will give us an update on how her EoE is looking. She's been trialling wheat presently and is on flixotide daily. It will be interesting to see if the results mean we can keep the wheat in her diet, although her eczema is flaring enough to make us think we shouldn’t be continuing with wheat anyhow.