Sunday, April 22, 2012

Celebrating and Remebering -1 YEAR with Angel Lungs

Today we celebrate and remember how much our lives changed 1 year ago. 1 year ago today, Elizabeth received her gift of life, a double lung transplant. Some days, it feels much longer than 1 year ago, and others its like it happened yesterday. Its one of those things that you will always remember the details of the whole day. From the time we got the call, to the time we saw her after transplant for the first time. We spent the first year and half of her life watching her fight to breath and stay alive, to now watching her meet milestones and do "normal"stuff. There's really now way to explain how grateful we are.

I cant even really explain all the emotions that go along with this. Im overwhelmed with happiness in the fact that we even made it to transplant a year ago, and the the fact that she is here a year later is truly a miracle. Transplant living is not easy, and the statistics are not always fun to think about. With the 1 year survival rate being 85%, she has overcome another hurdle in survival. We are hopeful she will continue to "beat the odds", and celebrate MANY, MANY more anniversaries!! The past year has been full of accomplishments, growth, and LIVING for Elizabeth. We realize that we are very lucky to have Elizabeth here with us, and we do our best to make the most of each day. We are not guaranteed tomorrow, we have lived in fear of her dying and were pretty close a few times, and we have seen her life saved and know what a true miracle she is. Our goal is to make the most of the days we have with her and ensure that she lives life to the fullest! We are excited to see what Year 2 with angel lungs will bring for our special girl, praying for lots of accomplishments, filled with VERY few hospital visits!!

Below are pictures from Elizabeth's 1 Year Celebration we had last week. We released over 60 butterflies in honor of her donor. We had an amazing turnout of family and friends, who have been with us every step of the way on this journey. We are SO thankful for the love and support we have!!

We also realize that there is another family out there today, remembering a year ago much more differently than we are. Today I am sure is a very hard day for our Donor Family. We want to remember them and the their loss. Because they chose organ donation, we are able to celebrate Elizabeth's life today. We will be always be thankful to them, and hope to be able to share her story with them one day.  We want them to know how much they mean to us, and how special their child is. Their child will forever be a hero to us!

Thank You for continuing to follow Elizabeth's journey, celebrating the good times and supporting us in the bad. We are thankful for YOU! Encouragement, love and support will continue to be important as we set out on year 2 with Angel Lungs!!

Monday, April 2, 2012

Every Milestone is amazing

I haven't updated in a while, Life with Elizabeth is BUSY!! She is now sitting up and scooting ALL over the place. We had to get a gate to put at the top of our stairs because she is so mobile now! Its amazing to see her moving and playing all over the place. She still doesn't have much of an interest in standing/walking on her own. But she loves to move, so we are hopeful she will get there ~ but with everything, it will be in Elizabeth time!  She has also started eating (a little) she cautiously eats Gerber Puffs in small amounts.  It really is amazing to see her doing things that a year ago, we worried she would never have the chance to do.

Medically she is doing well, no big changes or problems. She does have to wear a patch over one of her eyes for a few months to help strengthen the opposite one. This is an issue she has had since before transplant. We are hoping that the patch will help correct it. We have a follow up later this month. She received her last Synagsis shot (RSV vaccination) last month. I was a little shocked when we were leaving, her pulmonologist said he didnt need to see her for 3 months! Thats a huge milestone for her, since birth (when we were home) she had to see him weekly, and since being home from Texas she has needed to see him monthly.  ~ A little closer to normal ~  Her physical and occupational therapies have both been decreased, since she is making such progress, and we will continue to work on the things she needs help with. We are also going to start going to playgym at the Creative Discovery Museum. It will give her a chance to be around other kids (in a small group setting), and I will be able to be there with her. Her therapist will also attend to help her. Im excited to see how she does around other kids, and in an environment outside of our house! Her airway dilation that was scheduled in March, was postponed due to her Dr being sick. It has been rescheduled for April 16th. She will also have an echo and halter montior for her heart done that day. We will be traveling to Houston at the end of the month for her 1YEAR evaluation. I cant believe that its been a year already. We are truly blessed to have our special girl here with us!
April is National Donate Life Month, I want to encourage everyone to become an organ donor, share Elizabeth's story, and spread awareness in anyway possible. I am thankful for a wonderful workplace that has given me the opportunity over the past few months to share Elizabeth's story during every Inservice class we have had. I will also be sharing her story with the Navy Reserve Center during our April drill weekend. Matt's work is hosting a donor drive next week. We are so thankful for our donor family, and we want other families to have the hope that we have by being able to receive the gift of life.