Wednesday, May 14, 2014

An overdue update & 3 year lung anniversary

It has definatley been a while since I have updated, no news is good news right? :) We had a bit of a rough winter with Elizabeth getting sick but were fortunate enough to stay out of the hospital. She missed alot school during the fall/winter months with viruses/fevers/ and extra oxygen. In December we celebrated an amazing milestone, her 4th Birthday! Hard to believe looking back at how sick she was that she would ever make it that far. On Jan 10 2014, we welcomed our newest little bug, Charlotte Marie into our family. She weighed 8lb 3 oz, and is very healthy. We were so grateful for more answered prayers for her safe arrival and good health. Elizabeth is adjusting well to her new role of Big Sister. She asks to hold Charlotte, and to give her kisses. But she also lets you know when she is "all done with the baby". :)

Some major milestones, Elizabeth now walks on her own without any assistance. Its pretty amazing to see, she is all over the place now. She is still a bit unstable and wabbles some but is doing great. She is still enjoying preschool and playing with her friends. She is talking ALOT more and eating more by mouth. She still has her feeding tube for the majority of her nutrition and still requires oxygen during sleep due to her airway issues. She will start her last year of preschool in the fall, we will start discussing her plan for Kindergarten in February. I can't believe how fast she is growing up!!

In April we traveled to Texas for her 3 year post transplant evaluation. I can not even believe its been 3 years! I am so thankful for all she has accomplished during this time, and all the memories we have been able to make with her. I try to constantly remind myself we knew going into transplant that we need to focus on quality of life, not quantity. Make the most of the time we have regardless of how much that may be. She touches the lives of everyone who knows her, and I am so lucky to be her momma.

Her appointments in Texas consisted of transplant team, neurology, genetics, cardiology, labwork, CT scan of her lungs, Xray of her lungs, an another MRI of her heart. The team chose not to do a bronchoscopy of her lungs this time since she not had any issues as of now. Based on the tests/images her lungs are doing well. Neurology and Genetics didn't have any new information, we just follow up to they can track her progress. But our main concern was her heart, and unfortunately her aortic root has dilated more since her last visit. In previous posts I explained how if she were an adult they would already be considering surgery to replace it. But in children they are monitor it closely and set a threshold for surgery. Elizabeth's aortic root is currently dilated to 2.9 CM with 5 being the cut off for replacement. Based on previous images, the Dr told us its dilating pretty quickly. So we are starting her on a new medication in addition to the heart medication is already taking to help lower blood pressure in hopes that it slows down the dilation and gives us more time before she has to have surgery to replace it. We are really hopeful that it will slow down enough that we have years before we have to put her through such a large surgery again. But we really have no idea how long it will be. She will continue to have checkups every 6 months in Houston for her lungs and heart due to her airway issues and the aortic dilation. Most transplant kids at this stage are only going yearly, but we will go as often and as long as they tell us to ensure she is getting the best care possible.

April was also our time to remember Elizabeth's angel Elijah and his family. Remember the gift they gave, and celebrate the accomplishments Elizabeth has made this past year. We pray for comfort for his family everyday and are constantly reminded how precious this gift of life is.

We thank you all for your continued prayers and support! We ask for specific prayer that this new medication will work and slow down the dilation of her aortic root, and that her lungs continue to do well and stay healthy. I also ask for peace in knowing that hard choices are coming and God will give Matt and I the guidance to do what is best for Elizabeth.