Today we celebrate Elizabeth's 9th Birthday!!! Most people close to us and those on the transplant journey all know what a big deal this is. At transplant the statistics we were given was less than 50% survival at 5 years, she is now over 7 1/2 years post transplant. We don't take that lightly that she is still here with us and doing as well as she is! The holidays are always a reminder to me of how sick Elizabeth was since it was December 2010 when we were transferred to Houston. December isn't an easy time since its a reminder of how close we were to losing her, how hard she has had to fight to be alive today but its always a time of celebration and remembering just how far she has come and how grateful we need to be for every single day. The holidays and her birthday are also a reminder of how our normal, isn't the same as other families. I sometimes let our lack of normalcy bother me and make me sad for her and our family. But then I have to remind myself that no matter what Elizabeth is loved, and she only knows this life, this is her normal. Elizabeth still has a feeding tube and uses it for all her nutrition. So the "normal" holiday meals and birthday cake aren't things that she gets to experience or enjoy. Last summer Elizabeth was also diagnosed with autism, she has alot of sensory issues related to noises and crowds. One of the major issues related her autism is her lack of sleep, she often only sleep 4-5 hours, which means one or both of us also only sleep 4-5 hours. She also demonstrates alot of other autistic tendencies like flapping, repetitive behavior and over all just wanting to do her own thing. One of the biggest things is Elizabeth's communication still mainly consists of repeating words/phrases and signing things she hears on her ipad. She can communicate her needs and wants to us, but she isn't conversational. For the most part Elizabeth is completely happy being at home just playing on her ipad, swinging or spinning around in her spinner seat. She loves just hanging out at home, and in all reality that is the best option for avoiding germs especially during the winter. But at the same time, it makes me a bit sad that she doesn't experience life the way "normal" kids do. I am so grateful for all that she can do, but it makes me sad alot that she may never experience life the way Charlotte will. That is probably super selfish of me, but I would be lying to everyone if I didn't say it or type it out loud.
An update on Elizabeth's medical status, as of her last checkup in October her lungs are still doing really well. Her heart is still being monitored for the aortic root dilation, she take a few different medicines for that each day and has Echos, EKG, and cardiac MRIs at her 6 mth checkups. Over the past year her kidney function has started to decline, and she is now being seen by nephrology when we visit Cincinnati, she continues to have monthly bloodwork done and will have kidney ultrasounds at her 6 mth checkups. Kidney issues are not uncommon for transplant kids, the medicine she has to take to keep her body from rejecting her lungs can affect kidney function over time. It was something we aware of but had hoped wouldn't become an issue. For now we just have to monitor her and see what happens. Another recent issue that was discussed at her October appts is that Elizabeth was diagnosed with precocious puberty. Since she is still very small for her age, there is a concern that going into puberty at an early age will cause growth issues for her. As she goes through puberty her growth plates will close which could result in her staying about the size she is now. (For comparison she and Charlotte wear the same size and are almost the same height and Charlotte is only 4!) There is some concern as to what caused her start puberty so early, it could be the genetic mutation that has caused all her other medical issues, a result of all the medications she is on, or there could be something going on with her brain/pituitary gland. So she was scheduled for an MRI of her brain earlier this month, but we had to reschedule due to everyone getting a stomach virus. We are planning to go to Cincinnati in January to have the MRI completed. Once we get those results if there are no issues with her brain, we will discuss options for slowing down/stopping puberty or options for growth hormones. As always our main concern is making sure she is happy, and stays as healthy as possible to enjoy the extra time she was given with her angel lungs. We don't know what decisions we may be faced with soon, but we will continue to do what is best for her quality of life. 
Thank you to everyone who takes the time to read this, you are the family and friends who have and continue to support us on this journey. Please hug your little ones and be thankful for each and every moment! 
