Hey guys!
I guess after three months goes by I have an internal clock telling me to update our blog because that seems to be the norm, when things are going so well that is!
As Madi's year anniversary approaches, I can honestly say I have been so surprised at how easy this has all been and how well it has gone! Everyday I feel like pinching myself because of how blessed we have been through this entire process. It obviously isn't an easy road, don't get me wrong, but it's much better than than the one we were on for about 22 months!! I remember in February of 2011, Madi had just undergone a procedure in the cath lab at Primary Children's in SLC and the procedure did not go good; she ended up coding in the cath lab and was sent to ICU for about three days and scheduled for open heart surgery a week or so later. Anyway, while there, my mom ran in to a lady in the hall outside ICU, we were all obviously very upset with the days events and the lady came over to her and said she just felt the need to let her know everything would be ok. This lady proceeded to tell her that her beautiful four year old daughter standing next to her had gotten a heart transplant when she was a baby and was doing fantastic! (Thank you Lord for those words) My mom told me all about it later that day and I remember thinking to myself "jeeze, at least Madi doesn't need a heart transplant!" And from then on I always held that as a "last ditch effort" that we would NEVER want to do! My biggest fear, the last thing I ever wanted for Madi etc. etc. So, here we are, and I am telling you that it has been the biggest blessing that ever happened! The process of getting here was pure hell, but everything is so much sweeter because of it! Madi was so sick for so long that the Lord showed me a transplant WAS the best thing for her and a transplant WAS in her future! When we moved to Houston in October 2011, doctors had not even mentioned transplant to us yet but I found myself reading blog after blog of children who had gone through the process, just knowing in my heart this was what Madi needed! God prepared me for what lay ahead; I wouldn't be surprised, I wouldn't be uniformed and I knew this WAS the best for Madi because I had known for months she wasn't getting better. A transplant would make her better, no mater how scary that seemed. So when the doctors first informed us that she would need a transplant I was heartbroken, sad, mad (you name it) but I wasn't in shock and I was able to process everything and be there for Madi as God had intended! So, we have our ups and downs, good days and bad days, but over all we are doing great and just so thankful for this past year that we have so graciously been given. I'm not even close to having it all together or even "healed" from the past few years but when I do get down or scared the Lord always finds a way to pick me back up, all I have to do is ask and focus on him! Works every.single.time!!
We were told early on to wait a full year before trying to contact the donor family (our transplant coordinators said its just easier for everyone this way). So as a year steadily approaches in a little over three weeks I can't help but think about what I am going to say; I need to write a letter to someone thanking them for giving my child their child's heart? Thanking them for allowing my child to do so amazingly well and live life to the fullest when theirs is not? Thank them for holidays full of joy, while theirs were painstakingly empty? It's just something I am struggling with, something that I can't quite seem to put into words. And maybe that's because I can't! I don't think I can ever put into words how thankful I am for this family and their selfless decision to donate, I just hope I can show them the LIFE that they have given a little girl who never really lived until May 29, 2012! Until that day she was dying; everyday she was wasting away, little by little and bc they said "yes" she was given a second chance at life. She could laugh for the first time (bc she could barely breathe before), she learned to walk, she learned to talk, she started growing and just living, instead of dying! That's what I hope to tell them but I need prayers from you all that God would place the right words in my mind so that I can communicate that to them in the best way possible. A way to bring comfort to them in a time of grief. I hope we get to meet them one day when the time is right, but for now, I just hope a few words can bring them some joy!
Since her year anniversary is approaching, Madi has been scheduled for her one year biopsy the third week of May. The docs will take tiny tissue samples of her heart (about eight pieces I think is what they usually do) to send to the lab and look at them under the microscope to determine if there is any rejection. In addition to that (which this is the first time ever for madi's new heart) the docs will do an angiogram of her coronary arteries to make sure she is not experiencing any coronary artery disease: in transplanted hearts the coronary arteries (the arteries that feed the heart) become clogged over a period of time causing the need for another transplant. The cause of this is still not known and there is no treatment, once it starts, there is no stopping it and the heart will fail. Sometimes this happens early on and sometimes it's not for years or decades. So, this will be the first time the docs have looked at her coronaries so please pray that all looks great! She will have this sort of check up every year for the rest of her life and more frequent if needed! It's a full on procedure with general anesthesia and everything so we will be happy when it's over as usual!
She continues to amaze us with her progress and lately everything is "yeah" this or "yeah" that! Do you love me madi? "Yeah!" Do you want to go outside? "yeah" do you like helping me clean? "Yeah" do you wanna take a nap? "Na" ok, so she does listen, just when I think she isn't, ha! We still have therapies 5 times a week and she is really making awesome strides; she has been walking about seven months now and is so close to running!! which is so great! meeting milestones left and right lately:) our next goal is jumping, learning to use the potty (all the time, not just when she feels like it!), continue with learning to talk, learning her letters (she knows all the letters in her name! just cant say them) and just enjoy each other!
We hope you all are doing well and gearing up for a fun summer! If we get the ok from the docs in May we're hoping to drive home for a couple weeks this summer! There are so many of you we need to hug and see its not even funny! I also just started a new part time business that has been a big blessing so we decided to book a trip to Hawaii in October (doctor approval pending of course) but we couldn't be more excited! We have never been on a vacation together as a family so we are really looking forward to it and spending time with our families who will also be joining us to celebrate what we have all been through together :) I hope this update finds you all well! Thank you for all your thoughts, love and prayers as always!!
Love,
Tabi
Here's some of our latest pics: cousin visit (FUN!!), an outing to Hobby Lobby (sort of scary!), a pool we got to learn to swim (yay!), using her left hand to help paint (awesome!), fun at the park and the bubble princess!
