Monday, October 22, 2012

Celebrating and Remembering - 1 1/2 years with angel lungs!

Waiting to for her Bronchoscopy

Today marks 18 months since Elizabeth's lifesaving lung transplant. We celebrate this day because we are grateful for her second chance at life. We celebrate, because each day, month, year that passes is a miracle and miracles should be celebrated.  We remember the family who gave Elizabeth this amazing gift, the gift of life. Each time Elizabeth meets a milestone or accomplishes a new task I thank God for it, and I thank our donor family. No words I say will ever be enough to take away the pain they feel from the loss of their child, but I hope one day my words will show them just how grateful we are for their choice to save Elizabeth's life.

Eating French Fries- Dont judge, its one of the ONLY foods she will eat by mouth :)
Instead of flying this time, we decided to drive to Houston for Elizabeth's 18 mth check up. She had lots of appointments with blood work, xray, chest CT scan, bronchoscopy, and an appt with neurology.  Based on all her tests, and exams she is doing well. They did not biopsy her lungs so we still don't have a "definite" idea of rejection, but since she having no problems right now they don't feel biopsies are necessary. As always the main concern is Elizabeth's airway. Its very narrow and will need to be addressed soon. Before we went to Texas we saw ENT at Vanderbilt and discussed the same issue. So we will have to make some decisions soon regarding treatment/surgery for it. The FILAMIN A mutation and atrophy of her brain from her previous MRI after transplant were concerning to us before so we follow up with Neurology at TCH. Neurology was happy with her development and progress, he said we wont really be able to tell how much her brain was affected until she gets older.  He didn't want to repeat any testing right now, but recommended we get a some testing neuropsychology testing done now, so we have a baseline as she grows. It is common for there to be some learning disabilities with Filamin A so we will just cross that bridge as we get there. Her IGG level was lower than normal range, and could be part of why she has struggled to get over the cold she caught at school. She will start getting monthly IVIG infusions again at least until we make it through the winter.  The IVIG will help boost her immune system and hopefully help her fight off all those germs.  Overall our Transplant Dr was very pleased with how well Elizabeth is doing medically and developmentally.

Kissing Daddy on his Birthday!
Before we went to Texas Elizabeth saw Cardiology and ENT at Vanderbilt. Cardiology did an echo, which showed some possible changes with her heart. So Elizabeth will be having a MRI on her heart November 9th. Heart defects are common with Filamin A, so we are hopeful that this is nothing major.  The Dr wants to get a baseline so he will have a better idea of any current problems so we can address them as she gets older.  When we saw ENT, her narrow airway is still a concern. He wants her to have another sleep study to determine how much obstruction her floppy airway causes during sleep, this will give us a better idea of if/what kind of intervention needs to be done. She is scheduled for it on December 19th.

LONG car ride!!

Janna and I after 13.1 Miles!!
We got back from Houston on Saturday, and I ran a 1/2 marathon here in Chattanooga on Sunday. I ran with one on the PICU nurses who cared for Elizabeth here at home. We ran with Team CMB, in honor of a local girl who ran an amazing race against leukemia. As always my awesome husband got up early and brought Elizabeth out to see me finish my race. They were waiting for me close to the finish line, with a sign that said "So proud of you Mommy - Love Izzabug".  It means so much to me to see her out there when I run. Granted I am not a fast runner, and I take walk breaks. But when I get tired or want to stop, I just think about Elizabeth and hard she fought all those months waiting for her new lungs and how long she struggled to breath. I think about her being paralyzed and wondering if I would ever see her awake again. I remember crying for her, and wishing I could take away her pain. I remember every detail of the past 2 years and I think about the future and what it holds for her, good and bad. I also think about how much she has accomplished in these past 18 months, and how grateful I am for ALL OF IT.  When I run I also think about all the families that we have met along this journey and how we are all still "running our race" in one way or another.
Elizabeth offering "FREE RIDES for 50 Bucks" to all the Marathon and 1/2 Marathon Runners

Thank you all for your continued support!! The next few tests for Elizabeth will determine if she will need future surgeries or treatments, please keep her in your prayers! We hope to make the right choices for her care and keep her healthy and happy for many more "lung anniversaries'.