The unknown wait before the transplant...

As you all know Olivia's kidney transplant was postponed until this coming spring. Peter & I were able ( along with the doctors) to keep her "stable" without dialysis this past yr which by the way has been amazing. 2013 was the first yr to where Olivia & us felt somewhat "normal". She was able to see all of her cousins ( some for the first time), most of her aunts & uncles, she was able to go for the first time to VBS at our church which was unreal cuz she didn't get sick one day even though she was in the mids of 200 kids for a week. She has been able to eat by mouth mostly everything ( still on the pump at night), been able to enjoy swimming, dancing, playing & even had her cousins over for sleepovers multiple times... She has really created beautiful memories this past yr & we're so thankful for that. Things have gotten a bit hectic this past month (dec-jan). In the beginning of Dec Olivia's tests came back really bad which made the dr. fear that the surgery was gonna be before Christmas but GOD as always showed everyone that HE is in control. She did have to spend Dec23-rd in ER but so thankful we were able to spend Christmas at home. Olivia was born with only 17% of kidney function (only one working & the other burned by all the cysts).  For anybody that is in dialysis has that kidney function drop to 15%. Once you reach 15% your body can't function without dialysis due to all of the toxins created in your body from everything we eat & drink that can't be flushed out since the kidneys ( filter of our body) don't have enough or any strength to work. As of this month Olivia is at 15% but somehow, miraculously, she is still managing to stay without dialysis and the doctors give credit to Peter & I for being so involved in her care but we know that really is just GOD that is showing us how much He loves us and that HE will always pick us up & protect us from the unknown... This unknown journey has been hard for us but it's getting even harder now that we're so close to the big change that we're expecting to gain from this transplant. They tell us that is going to be worse before it gets better but our hearts have gotten so weak from all the ups & downs, from all the pain that we've witness our little girl go through... It just hurts too much to even think for what's ahead of us cuz we. just. don't. know. Also last month,Livi's dr. presented to us the idea of her maybe to be put on the deceased donor list in hopes of getting a better match than Peter ( he's 50% match). In order for her to be a candidate we had to get clearance from more than 12 doctors & specialist which meant 2-4 hour appt. with every single one of them on top of labs and testings done weekly ( this doesn't include Peter's cuz he has to go through the same clearance). The stress of just getting them scheduled on top of taking in all the new info that each & every one has to offer & than trying to explain to a 4 yr old that it's going to. be.okay...it is overwhelming. You hear all of these horrible things that your child is suppose to go through like she hasn't been through enough just makes you give up sometimes & just shut-down cuz you feel your brain overheating since your heart has weakened so much & you can't let that lead your thoughts...    On the positive note Olivia only has 3 more specialist appt. left & on Feb 19-th she should be on the deceased waiting list for a better match... I'm really struggling with the process of the deceased donor's list & am retaining myself from not bursting in tears because Livi's gift of life will be another family's loss. For sure I pray for a better match which will give Livi better, longer life but I'm struggling to be happy knowing that another family will loose a loved one... i can’t even write that without chocking up… But yet, it is so humbling to know that in the middle of their tragedy these families are donating their organs to help other people live.... All these said once Olivia has been put on the list the surgery can happen within the next 24 hrs. So once the donor has passed away they have 24 hr to use that kidney or the next person on the list will get it. There is so many factors involved in to this waiting period cuz Olivia cannot be even slightly sick nor on dialysis to accept that kidney during those 24hr. ( if Livi is sick & they start her immunosuppressant meds needed for her body not to reject the new kidney, without catching it on time it can be life threatening to her). So, Please pray for a prefect match & that she stays healthy during this flu season. We’re so thankful & blessed to be surrounded by such amazing family,friends & church and we know the power of prayers because of you all… thank you…