Tuesday, April 30, 2013

Update 2

Oliver is no longer in acute respiratory distress! His nail beds and lips aren't purple any longer and his breathing has almost normalized. His lungs are still crackly, but that we expected, the antibiotic usually takes the full 5 days to help him get over that. At least his airsacs are opening up to let oxygen in! His fever has held steady just below 100* with the help of tylenol and motrin.

He's not out of the woods yet, a lot can happen when you're fighting a repeat double lung infection, but this is all good news.


  1. The power of prayers. Will continue praying for all of you. You don't know me, but I am from Bethel, and Ollie has touched my heart. Just want you to know that I admire you and your husband so much. You are doing a wonderful job!!

  2. Oliver looks beautiful. So glad to hear the good news.

    As a former student of Mr. Ciparelli, I want you both to know that Oliver's story has had a tremendous impact on me as a student and as a person. Before all this happened, I didn't know what I wanted to do with my life, really; I knew I was going to college, but I didn't know where, or what I'd study, or why I even wanted to. It just seemed like the next step that I had to complete.

    Oliver's story has changed that for me. When I heard about the diagnosis, my first response was shock, then grief, then Wikipedia-ing of the disease, then more shock and grief. I may not know Oliver personally, but I couldn't bear the thought of any child suffering that way, and I couldn't even imagine the pain of a parent in this case.

    My reaction to hearing about what is happening with Oliver taught me two things about myself: one, that I am passionate about helping others and want to dedicate my life to that; two, that I want to do whatever I can to help the fight against diseases such as MLD. I was already interested in biology, but the pain of Oliver's story showed me that my future lies in medical and disease-treatment research. Because of him, I will be attending MIT in the fall and majoring in bioengineering, with the ultimate goal of using genetic techniques to fight disease.

    I am so, so sorry for everything that you have gone through and continue to endure. I only hope that my story can ease some of your pain. I want you to know that I will do my best to ensure that no child suffers this way in the future, and I'll do it for Oliver.

    - Luisa Kenausis

    1. Thank you, Luisa! Best of Luck at MIT! You'll be amazing!

  3. Glad to see his little cheeks aren't so red. Continued healing.

  4. My continued prayers. How precious!

  5. god bless him and his family, i will pray for him

  6. He is a fighter!!! Love you guys! xoxo

  7. I'm another one you don't know - a mother and grandmother from Danbury. I am praying for you and your beautiful boy. I am carrying you in my heart....

  8. If you need to talk I'm right here for you.