At the start of 2012, Addison had just finished a 3 week hospital stay that resulted in her having to come off peritoneal dialysis and go on hemodialysis. She had lost a lot of weight and was recovering but definitely facing some very real risks and obstacles. We knew she had hearing loss and needed to work on her eye but in the face of her acute renal issues, all of that seemed some far in the background. She had turned one and just started army crawling. If you saw her today, you would never be able to guess any of that. She is the happiest most adorable two year old who is healthy and thriving. She is so amazing, she wears her hearing aids all the time and if one buzzes or comes out of place, instead of ripping it off like she did a few months ago, she actually puts her hand up and fixes it herself. She wears her patch without resistance and her eye is so much better. She will have a day surgery to fix it more permanently in a couple of months and that issue will be behind her. She walks everywhere, tries to run and jump and has this adventerous little spirit. She is starting to discover words. Medically she ended 2012 with a great biopsy report that her kidney is working brilliantly and all her labs have been excellent for months now. She is truly healthy. And happy and so loved. 2012 was a miraculous amazing year for Addie. I will never stop being grateful for the year I got to give Addie my kidney and see her life turn around before my eyes.
As I write this post, I am sitting in the PICU next to Max who is today 3 weeks post transplant. I had assumed he would have long been home by now (for reference, Addie was home at 8 days post and out of the PICU at 3 day post... so while we knew he could have a harder time, we were never expecting this). At the end of 2011, although we knew Max had delays, we had not yet done an MRI and so we really had no idea what was in store for us there. So 2012 was a very emotional year for us both as we spent the year on the quest to finally settle with a CP diagnosis and then as we explored whether we would transplant Max and then finally did, only to have the unexpected hurdle of an RSV infection. But while 2012 was difficult for Max, I do not want to ignore the many miracles that happened for him this year as well. In February of this year, Al and I sat through an awful meeting with a team of doctors and were told that they suspected Max has a neurologically progressive condition that would result in him losing all his abilities and significantly shorten his time with us. We were told the chances of transplanting him ever were very small. And yet, here we are on the first day of 2013 and Max is alive, he is very much aware and interactive. We know he has cerebral palsy and will need a wheelchair but we also know there is no limit on what he will be able to think and how he will be able to interact with others. And most significantly, he has his Daddy's kidney inside of him and he is peeing and free of dialysis. He is still fighting RSV and not well yet but I do believe the worst is past us and that from a very scary and terrifying couple of weeks, he survived, his brand new kidney survived and is working well and he is slowly, but I do believe surely, going to get well and come home better than ever. So 2012 has not been an easy year for Max, or for us as his parents, but it has been a year of great miracles nonetheless.
Please keep praying for all of us. At some point, I will write more about what all has happened these past three weeks. I haven't been ready to really talk or write about it yet but I will. It has been very up and down and Max is still on a biPAP machine to help him breathe so he really needs prayers for complete healing. Al is doing really well. You would never think he had surgery 3 weeks ago, he is just doing awesome. Addie is still here with us and bringing so much joy to us all. She is spending the mornings with Al and Al's parents and loving her time with her grandparents and then I leave the hospital in the afternoons to spend time with her and she makes me so happy. I could really use some extra prayers this weekend as I have to go back to Houston with Addie on Saturday. I have to be back at work on Monday. I never imagined leaving my baby in a PICU in another state. But for a lot of reasons, there doesn't seem to be another option so please pray for peace for me, and stability for Max and that my time away from Max will seem short and and not as painful as I fear. I will be coming back for a weekend to see the boys in a few weeks and we hope they will be home in late February. Al's family will be with him the whole time.
Thank you all for the way your love, support, prayers, generosity and interest sustained us through 2012, especially admist our two big transplants. We feel very blessed that we did not walk alone through the highs or the lows of last year and look forward to what we hope to be a less dramatic and eventful and more healthy, happy and stable 2013.
Some photos from the last month...
Adorable Birthday girl!
With my baby girl on her birthday
Opening and Playing with presents!
Her Abby Cadabby balloon was bigger than her!
Cuddles with mommy
Max's first post ventilator smile, appropriately given to his Daddy!
Thankfully he saved one for Mommy too!
Last week during one of his really good days, love his precious happy face!
Today (01/01/13) post set back on his biPAP, rosy from another blood transfusion
Brushing her hair!
With Adam and Jenny, loved spending time with family this Christmas
Slides are so much fun!