The beginning

I know most of the people reading this will know all about her but humor me.

We (well I I guess)  got pregnant on our honeymoon. It was a shock to everyone but we were very excited. Everything was normal until around 33 weeks when I started getting high blood pressure. Around 35 weeks I was hospitalized for it. I also had a follow up ultrasound to check fluid levels and the doctor noticed a heart defect. They thought it was worse than it is, so we were rushed to Children's for a fetal echo. I was released 2 days later and was put on strict bed rest. At 37 weeks and 6 days I was induced because of my high B.P. and Kenna had stalled in growing. Exactly 48 hours after I checked in, Makenna Ann was born. She had red lesions on her face and was really tiny at 5lbs 4.5oz and 18.1 in long.

After she was born, she was rushed to the NICU for observation. She had every sort of doctor look at her. Her dermatologist is the one that recognized all her symptoms as M.I.D.A.S. I believe about 23 cases are known in the country. We got the news about her blindness early one morning before we got to the NICU. It was a rough ride to the hospital. We both cried on our way there. We had to grieve the "normal" baby we lost and  plan for our new special needs baby. She was released from the NICU 7 days after she was admitted.

Luckily, we have a Center for the Blind and Visually Impaired Children here so as soon as we found out Kenna was blind, we called and got set up for an evaluation. She started receiving PT and Vision therapy at 1 month. They came out once a week until this January and now I take her in for class every Thursday. She enjoys it.

As for her vision, we know she can see lights and shadows. She holds objects very close to her eyes and reach out for you if you're close enough. Her heart is fine. She has a murmur but it hasn't changed since she was born so as far as we know, she is golden there. She is hilarious and makes me laugh every day. She just started walking. She still isn't eating table foods so thats our daily struggle. But as far as everything else, she is as normal as she can be. We take one day at a time. We learn something every day.

Keep your arms and legs inside the vehicle at all times. Its sure to be a bumpy ride.