A New Perspective

Hi Everyone, this is Joe’s sister Jenny, reporting in from Joella-Central. Today I had the privilege of meeting my niece for the first time – I even got to hold her! I asked Joe and Katie if I could cover the blog for today, July 7th, and they graciously said yes. So here is the latest news.

I want to share with everyone how glad I am that I was able to meet Joella in person. I was honestly very anxious about being in the hospital, and after reading about the condition on the internet, I was truly steeling myself for the worst.

But I can sincerely tell all of you out there in blog land that this little girl is a 15 day old infant like any other 15 day old infant, with the exception of the blisters forming and healing on her skin. I saw this little baby, breathing in and out, moving her arms and legs, making baby sounds, and it hit me – She is real. She is a person who has chosen to come into our lives. She is not scary – She is here to love and to be loved, and that is something we all can relate to. I used to think that acceptance meant “surrender”, in a negative way, having to give up on a situation that didn’t go the way I expected – but later in life I have learned that acceptance means saying “Thank You” for a gift, even if I do not understand why at the present moment I have received this gift. I am amazed and inspired by Joella’s mother and father, Katie and Joe. Standing in the hospital today, with Joe and Katie, I was humbled by their love and their total acceptance. The two of them are there for Joella, and no matter what she will encounter in her life, they are prepared to face it with her. Joella has come into our lives for a reason, and we will all be touched by how precious she is. So I say thank you to God, for the gift of Joella. For those of you who cannot see her in person, I hope what I have written here helps personalize this baby who has joined our family, and the larger family of the human race.

So on to the report: Joella had a busy morning – During her bandage change, she had a consultation with a plastic surgeon, Dr. Murthy. This surgeon is considered a “child prodigy” – he was even the subject of a New York Post article about a real-life “Doogie Houser” – Katie and Joe really liked this doctor – he talked to Joella and gently examined her blisters. Dr. Murphy was very pleased with the way her legs were healing. For Joella’s feet and ankles, he has recommended a procedure to graft bovine (cow) skin to her feet and ankles to prevent scar tissue from impeding joint movement and causing complications when Joella begins walking. This treatment would anchor Joella’s healing skin to her feet and be a catalyst for new skin to form. The procedure is tentatively scheduled for next Tuesday.

The bottle feeding did not go as well today. Joella received some additional pain medication to help her tolerate the dressing change and the examination by Dr. Murthy, so she was too tired to take the bottle. Not to worry, she is still receiving breast milk through a tube in her nose. Except for this feeding tube, she is tube-free – no ventilator or other monitors needed. The Occupational Therapist will return tomorrow morning before Joella’s bandage change to try again – she should be wide awake and ready to eat, as most Murray’s usually are after a good night’s rest.

More news tomorrow, stay tuned.