The Engineer's French Wife: DIAGNOSIS DAY ANNIVERSARY

Today marks 1 year since the diagnosis.

We have come a long way, from not knowing if we were gonna continue the pregnancy, deciding whether to do fetal surgery or not, giving birth and being in the NICU through 5 surgeries, and then dealing with Trach/vent, g-tube, every day care and life, nurses, hospital appointments, therapies.

Despite all the fear, the worry, the hard work, we have NO REGRET.

Melody is getting better every day.

We started weaning her off the ventilator and this has been huge for us.
She needs the ventilator when she sleeps, but otherwise, if she is awake, she can breathe on her own. It allows us to do a lot more with her and helped her make more progress with her head control for instance.

This is my favorite thing to do. Mommy time, without all the tubings everywhere.

This was on July 4th. Progress in sitting up. She still needs support but this was impossible a couple of weeks before this picture was taken.

We also moved to a new house on Memorial Day weekend and it has been great.

Her new bedroom is a little bigger and it has allowed us to put her crib with all her equipment and even a daybed for cuddle time.

This is the organization for her supplies.

We have a big cabinet right by her bedroom door and it is perfect.

And the traditional shoe hanger behind her door for all small stuff that we need on hand.

Here is her bathroom, that I am still working on.

We chose a house that is 1 story because we don't want to deal with stairs and all her equipment. It is too dangerous and too tedious. The house has a large entryway, large doors also, so if she needs a walker, or a wheelchair, it will be easily accessible for her.

We had all the floors redone with beautiful tiles and it is easy to roll her vent or a stroller for instance.