Thursday, April 24, 2014

Good news, bad news

A blessed and happy Easter to all of you!

The good news: Lily has great doctors taking care of her.
The bad news: We keep having to meet new ones.

Lily had her four month pediatrician check up on Monday (a month late- she turned 5 months on Wednesday!). She hasn't gained much weight and he has asked us to start supplementing one bottle of formula a day. He has also recommended we start occupational and speech therapy (to assess her ability to eat with a spoon and to help her in this goal), along with the physical therapy Lily is currently receiving. Lily's doctor is also concerned about the shape of her head (it's longer instead of roundish) and that it's not following the curve on the growth chart. He referred us to a pediatric plastic surgeon who we met with today.

The plastic surgeon told us Lily needs a CT scan to see the bones in her skull to determine whether she will need surgery to correct them or if she'd be able to just wear a helmet. He's been doing this for over 15 years and is fairly certain she will need surgery. We will have to go to Miami for the sedated CT scan at the end of May and the surgery, which lasts a few hours and requires a 2-4 day hospital stay, will be at the beginning of July. Apparently this is a surgery that is done every week, but that only offers some comfort...strangely enough, something about operating on skull bones and also involving a neurosurgeon is unsettling.

Prayers that Lily happily drinks the formula and gains weight are appreciated. We were told that Lily may lose the ability to eat on her own as she gets older, and that has been a constant worry. 

Our Lady of La Leche, pray for Lily!

Friday, April 18, 2014

Divine Mercy Novena

We invite you to join in praying the Divine Mercy Novena with us, which begins today.
Divine Mercy Sunday, the Second Sunday after Easter, held no particular meaning for us until last year, when we found out we were expecting Lily that day. We feel it was no coincidence. We would have five children, ages 6 and under- yes, “Jesus, I trust in you!”
As we were discussing names, we had settled on Lillian, but I (Laura) wasn’t sure about the middle name we had picked. I started thinking about the Divine Mercy and really felt like we needed to name Lily after St. Faustina, the apostle of Divine Mercy.

This year is especially significant because Pope John Paul II, who canonized St. Faustina and who declared Divine Mercy Sunday, will be beatified on this day.

You can find out more about Divine Mercy Sunday here:

And join in praying the Novena with us here:

                                                        Our little Lillian Faustina Maria

Tuesday, April 1, 2014

Hearing Test

Lily had her hearing test today. She was only asleep for about an hour and so they weren't able to do all of the testing that they need to do, but it was confirmed (again) that there is moderate to severe loss in her right ear, and that there is some loss in the left ear.
Because it's just nearly impossible to get good readings from wiggly babies, and because she needs to have the full range of decibels tested, we're going to have a sedated hearing test (it will only last an hour or so). That test will enable the doctors to figure out what kind of hearing aid she should have.
The sedated test won't be done until the summer.

Thanks for your prayers! We've had a busy last few weeks!