Since dealing with her cold Ali refuses to even attempt to bottle feed or suck on her soother so it’s been a real set back in that regard. ve lost most of the progress we made.  We’re pretty much starting over again on the feeding therapy and she’s not making any progress right now which is discouraging.

Ali has been struggling with her weight gain since being ill as well. She’s hovering around 6 kg but she keeps going up and down,today she’s up!

We have managed to speed up her tube feeds quite a bit in the past few days which is great! She eats at about half the speed of a “typical” baby now which is awesome! She’s come along way since leaving the hospital and is now eating faster then she ever has before!

Yesterday Jason took Ali for tumor screening. There is a significant amount of evidence that Ali might have a high tendency to develop certain childhood tumors. For all you cytotechs the tumors are neuroblastoma and rhabdomyosarcoma. Obviously we need to avoid those at all cost so we are having her screened every 3 months by u/s and will continue to do so until she’s 10 years old. When she turns 10 we’ll switch our screening method and gear it more towards Transitional cell carcinoma as at that time TCC will be her major risk. We don’t have any results from the screen yet but hope to hear soon.

Thanks for reading!