Saturday, June 15, 2013

Again I am totally slacking on updating this blog. Life has been busy for us!

April was a rough month for Elizabeth, she got pretty sick for about 3 weeks, needing oxygen 24 hrs a day, vomiting and fevers. She ended up having metapneumovirus, its pretty similar to RSV. We were lucky that she was able to stay out of the hospital and recover at home. As with any illness/infections/virus she gets our biggest concern is that it can cause her to go into rejection or cause damage to her lungs. Some illnesses/viruses can cause rejection immediately (acute) and others can just cause long term damage which leads to chronic rejection. Thankfully we are not seeing any immediate damage from this illness, but only time will tell with long term damage.

 We traveled to Houston for her 2 year check up~ AMAZING I know. I cant believe it has been 2 years since she received her gift of life. Her checkup went pretty well, it was a busy week for sure, she was seen by ENT, Neurology, Genetics, PT, OT, Social Work, Nutrition and the Transplant Team. She had a CT - angiogram, labwork, and a brochoscopy done while we were there.  Her lungs seems to be doing well, and she is showing no signs of rejection at this point, which we are very thankful for! Her airway is still the main concern, and based on previous discussions with Texas and Vanderbilt we have decided to pursue treatment at Texas instead of Vanderbilt. We have been waiting for all the doctors to meet and discuss a plan for her. Last week I received a phone call that she will need a repeat CT-angiogram and rigid brochoscopy done in Texas. Once that is done, the Surgeon can make a better decision on how to move forward with any type of airway reconstruction. We are scared, but ready for "this issue" to be treated and resolved. The biggest fear with her airway being so floppy is that if she gets sick like she did in April it could cause her airway to close off. So for now we are waiting for a call back with an appointment date, hopefully within the month to travel for these tests.

 April was also the month we celebrated Elizabeth's 2 year anniversary with angel lungs, as well as remembering her donor and their family. We celebrate the gift of life she was given, and the milestones she has been able to accomplish all because a family in their darkest day choice to give her life.  We were blessed to share the day with our family/friends and again this year released butterflies in honor of her donor.

  Developmentally Elizabeth continues to make progress. I wont lie there are days I get jealous of other kids her age and even younger who are doing things that she can't do yet. But I remind myself she is alive, and progress will come all in "Elizabeth Time". She has started saying more words, and still uses sign languae and can communicate her wants/needs pretty well. She is now pushing/pulling to stand pretty frequently. Her favorite place to stand is in front of the TV, watching Dora. She will stand for long periods of time and ask for help when she wants to sit back down. She is side stepping some while holding onto things. So we are hopeful that she will be able to walk within the year. She is doing really well at preschool, playing with her new friends, playing on the playground at school and doing lots of big girl things.

Elizabeth at school :)

There are days when I just watch in amazement at the little girl she has become. She is truly a miracle and we are so thankful for her. Everyday I remember and "relive" some of her days in the hospital when she was so very sick. It breaks my heart to look back at those times, but it keeps me grounded in the now, knowing that any given day we could be back there. We have to cherish today, and make the most it!