This Crazy Life

We discharged from Clementine on 8/18.  It’s been one month.  She’s within 2.5 pounds of her discharge weight.  Including the week + that she was at PHP and not eating at all.  She’s still eating.  She’s in school.  She’s communicating with people.  I am still very cautiously optimistic and I refuse to celebrate too much.  But today, I went back and got some historical data and some actual facts.  This actually helped me a lot as I can see where we’ve been before.  She discharged from Veritas on 3/24/22.  She was admitted to Children’s Mercy on 4/21/22.  She had stopped eating and was down 14 pounds.  This was after just over 16 weeks at Veritas between inpatient, residential and PHP.  Next set of numbers.  She discharged from McCallum PHP on 12/9/22.  12/18/22 she was admitted to the hospital.  She was only down 7 pounds at that point, but that was in 9 days and she had completely stopped eating and drinking.  She was then admitted to the hospital again on 1/3/23 and was down another 6 pounds.  So 13 pounds total including the 5 days in the hospital when she was fed and watered.  This was after 6 months of treatment.  ERC for residential and PHP then transferred to McCallum to finish PHP.  So THIS IS HUGE.  We have lasted longer at home than ever before and we are still stable.  Can it change?  Absolutely?  Do I think it’s going to change anytime in the near future?  I honestly don’t.  I honestly think we are doing ok right now.  I think she’s hanging in there.  So maybe tonight I will celebrate that I survived the first month home!!