Tuesday, July 26, 2011


Has it really been two years since we last updated our blog? Wow, time has flown by and so much has changed. In two years there have been many adventures, but by far the biggest adventure and joyful change in our lives has been the addition of Ava Lee Jones on February, 24, 2011. She arrived at 9:25am weighing 6 lb, 10 oz, and 21 inches long.

Mason and Maddi adore their little sister and love to say good morning to her and kiss her hello when they come home from school.

Some updates about each kiddo:

Mason - is enjoying preschool, loves the Cars movie and all characters from the movie. His collection of vehicles has grown, and he has officially reached the age where he wants every toy that every other kid owns. We are now having the "be grateful for what you have" discussions and "maybe you can do some chores to earn that toy" talks.

Maddi - is busy, busy, busy. We have never seen a child who can tear through a room in seconds, literally seconds. She is hilarious and loves to dance and sing. I see a cheerleader in our future. She loves to hold Ava, is a fantastic big sister, and sometimes is caught with Ava's "plug" (pacifier) in her mouth.

Ava - has a longer story. To make a long story shorter, Ava was born with a rare chromosome disorder. We did not discover this until she was hospitalized at 10 weeks old for bronchiolitis/aspiration pneumonia. Ava has many symptoms that you may read about as time goes on, but for the most part she is doing very well.

For those interested in genetics - Ava has a partial trisomy of the 1 chromosome (specifically a triple copy of 1q42.11-q44). This extra material is located on the top tip of her 7 chromosome - none of her 7 chromosome material is missing. Neither Bill nor I are carriers of this changed chromosome, so Ava's condition is considered "de novo" meaning that it is new to her. This also means that Mason and Maddi are unlikely carriers.

Ava was on oxygen for a couple months and has been successfuly weaned off. At this time she has an NG tube (a tube that goes up through her nose right into her stomach) because she aspirates liquids into her lungs. This has helped her gain some much needed weight. However, Ava continues to aspirate during all of her swallow studies, so we will be meeting with a pediatric surgeon (August 5) to discuss getting a g-tube (a tube surgically placed into Ava's stomach). Ava also has hypotonia (low muscle tone) so that means that she is a little behind in the gross motor skill category. She is not quite lifting her head when lying on her chest nor holding it upright for very long. She has started to push up with her arms when she is on our chest or shoulders, bearing weight on her legs, reaching for toys, and holding them if we put them in her hand. She is definitely cooing, smiling, laughing, very aware of her environment, and basically a very content and happy baby. Ava attends Physical Therapy a few times a month and in the fall will have a dedicated teacher and therapist work with her at home or daycare. She will continue her PT at Mott Children's Hospital as well.

Many people ask us what this all means for Ava's future. It is very hard to predict what Ava's prognosis is - we do know that her condition is not life threatening and that she can expect to live as long as the rest of us. As far as what her limitations will be - we aren't placing any on her and neither are her doctors - the sky is the limit for Ava - just like Mason and Maddi. Bill and I are both committed to creating a normal life for all of our children and providing each of them with the best healthcare and education available.

Clearly, Ava has lengthier updates and many doctor appointments. We hope that this blog will be a fair update on all of the kiddos, but we will also use this as a way to share and document our journey with Ava's more complex health needs. We hope that you will check back in with us to see how Mason, Maddi, and Ava are growing and thriving.

Thank you to all of our family and friends for your continued support in all aspects of our lives.
(And thank you to Uncle Chad for taking all of these beach pictures.)