What a week we've had! Sometimes I feel unsure of sharing good news because things with Noah change so quickly. I hate to disappoint. The joys of being a people pleaser! So, I may have to retract information in this post at a later time......BUT I HOPE I DON'T HAVE TO!
We've had a liberation in tube feeding. Last week I asked Jared how he felt about trying a bolus feed via syringe. He was all for it so I began to try 250ml feeds 5 times a day with Noah. I went very slowly at first, taking 45 minutes to pour the formula in through Noah's g-tube. We found that 250ml was a bit much for Noah to tolerate so we moved to 6, 200ml feeds. The best part.....we are doing feeds every two hours, each lasting about 20-30 minutes, and are all finished before bedtime. That means Noah goes to bed without a night tube. I have not washed a feeding bag in 5 days. Does that ever feel good!! Again, this might not be the end of bags/pump etc. but for however long it lasts, will take it.
Not surprising to us (but it does seem to throw the dietitian and Dr. for a loop) Noah is still not willing to eat or drink in the morning. Even after being off formula since 7pm in the evening, he won't even take a sip of water in the morning. Like I said, not surprising to us. Most of the professional "theories" given about Noah have been proven otherwise by his choices. All we can do is offer him food and let him decide what to do.
I have a product to share about this week. I am loving Noah's new Button Buddies. They snug up around his g-tube and seem to be much more effective at soaking up leaks from his stoma. We had been cutting make up remover pads for the last 6 months. Despite stopping acid production via medication, the leaking does cause skin irritation. Hopefully this will help his red skin around the stoma. Here is a picture of the set I ordered for Noah - they are fun and colourful!
Pantless at Oma's house due to a med port incident! I quickly changed the port but the pants were done for. You can see Noah's muscle tissue removal on his upper thigh - nasty scar....but the fundo scars on his tummy are pretty hard to find now.
And now, due to popular demand at church this morning...a bum scooting video!