Update on Kylie from her mom:
We were told that the oldest baby that TCH has had live with this disease was 5 months old (he was transplanted at 5 months old). Kylie will be 5 months old tomorrow.
She is still at the top of the transplant list and we are accepting all donors; matched blood type, unmatched, high risk etc.
We still cannot find a reason for the low body temperature. She is sweating and requires a fan but also needs clothes and blankets to keep her from dropping below 96 degrees. 
The sweating could be a sign of withdrawal.
Her labs showed that her calcium and fluoride are low.
They are going to start giving her sodium chloride and potassium supplements to help with her PH.
We also had to raise her lovenox dose to help with her blood clot.
Kylie had so much fun in therapy today that she fell asleep while doing stretches
I apologize that I have not had a chance to respond to comments and messages. Please know how much I appreciate each of you and y’all’s support means the world to me and my family.
Prayer Warriors,
Please pray and share with others that pray! Time is running out for this sweet baby!
Blessings,
Lonnie
