It's been a while since my last blog and not too many things have changed. We're settling in at home finally and traveling down to Philly twice a week. Since the last blog we got the confirmation from Seatle for the GVHD in the gut so no changes were made with Jack's meds to treat it. We started out with 18 hours of TPN at home and are now down to 12 hours and what a blessing that is. Jack has more freedom during the day but he's still doesn't have much strength and is very protective of his central line. We have to scoop him up from under his legs to carry him and can't lift him up from under his arms, needless to say, he's quite a load.......Thank God. He's gaining weight, some of it is fluid, but some is true flesh. He is very demanding and I dont' get much done other then making him food. Jack starts his day at the kitchen table and continues to sit there for hours on end. I'm glad he's eating by mouth, but he doesn't eat a whole lot. Something is better then nothing.
The last 3 times we went to clinic he's needed platelets and today (Thursday 2/8) we made a stride and he didn't need them. So hopefully this is a good sign that he is starting to make his own and that his graft may be getting better with the IV nutrition and treatment for the GVHD. The stooling hasn't changed much and we have good and bad days. I'm tired from broken sleep at night but I know it will get better.
Jack was happy to see his friend Matthew Brand and his mom Cathyie today and we're glad he is doing much, much better. Matthew has even started school again which is a good sign for Jack being able to start school again soon. Matthew had suffered very badly from GVHD after his transplant and has done very well with the treatment which is great hope for Jack.
Thank you again for always keeping us in your thoughts and prayers.
God Bless