A full year of updates ...

In the beginning of this year, Olivia & Peter started the transplant journey. It took months of bi-weekly blood drawing but at least we have some great results to start with. They are both a MATCH. Olivia's blood didn't reject Peter's and also so far she tested with zero antibodies which is Amazing news. ( on a normal child you want them to have antibodies to fight viruses, bacteria etc so they built a strong immune system but on a transplant patient any antibody will make it that much harder for the body to accept a new organ( foreign ) without fighting it) Another important test that still needs to be done is the MANO one. Olivia is negative but if Peter tests positive than will give her a 60% higher risk of cancer :- [ { it's all a side effect of the anti rejection meds that she has to take for the rest of her life) Until last month Livi was scheduled to have the surgery this Sept but the past two months have been pretty stable which is encouraging us to postpone the surgery until spring. No date has been set yet due to all of the testing & clearance that both Peter & Livi has to get before surgery ( Cardiologist, urologist, opthomologist, infection dr. , psychologist,2 of the surgeons, nephrologist ... all i remember for now) It is a lot of doctor appointments that takes time from our already busy schedule. Olivia is still on daily growth hormone shots which have been a blessing that shows in her height (39" now from 31" that she started last June) and also she has been getting bi-weekly hemoglobin buster shots to help her make red blood cell which are killed by the enormous toxin amount that her body has due to her kidney failure. She continues to be monitored monthly by her dr. visits & labs. Again this past 2 months have been pretty stable which makes us so thankful to be able to use all this diff meds to help her condition & prolong the surgery time to where she is a bit bigger & stronger to handle it all. The new kidney will be placed in her abdominal area. Her dr. and us have decided to wait on the nephroctomy ( removal of native kidney) surgery until after the transplant. They will wait 2 weeks to see if the old kidney will continue to produce urine than they would have to remove it to protect the new one from drying out & failing. Unless they do the secondary surgery ( adds 2 months hospital recovery) Livi should be out in 4-6 weeks. Afterwords she has to be seen for blood draw (labs)3 x weekly for three months & 2-1 times for another 6 months. She isn't allowed to be around people for 6 months ( beside @ the hospital for labs) due to her immune system & antibodies. Soooo. Beside all the hurt and trauma if everything goes well and she takes care of her new kidney we're looking at abt 15-18 yrs :) She still has to make sure to intake a LOT of fluid which will decide on her g-tube button removal & kidney's life. The dr. said that her patients sometimes can't do it until teenagers when they realize the importance of the water intake for the kidney life-span but I believe in Olivia cuz she is so smart & understands already the severity of her situation. She is my little hero 💛💛💛.