Day+86 Liam pulled his NG tube out again today. So I put it back in. I never thought I would be putting a NG tube in my own child. Yesterdays results give us so much hope. Even if it is only a couple of test results. Liam is doing very well today climbing, crawling, and getting into everything. He is so close to walking something I wasn’t sure I would get to see. But by the grace of God and a wonderful medical team. We still have him.
We are so grateful for all the love and support from everyone. We will never forget all that has been done for us.
Yesterday a beautiful strong girl Nevaeh got her wings. She lost her fight to HLH but will always be remembered and loved. Her strength was amazing and her fight was unforgettable. Spread your wings and fly free of pain.
The HLH world is so much more than I ever knew and is so scary at the same time. There are so many that do not get the outcome we all want for them but they too are warriors and will never be forgotten.
Update from Kristy: Saturday, August 6, 2011
Day+86 Liam’s ferritin is 12 🙂 his adrenal glands are not functioning so we have 2 start cortisone 3xday. Liver function is still improving.
There is no sign of GVHD on Liam’s skin. Skin biopsy came back great. Thank you Jesus, doctors and staff. So far all is good. 🙂
