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!


  1. The kids and I still pray for Lily when we visit Mary after mass, asking for the intercession of both St. Kateri and St. Lillian. We will continue to do so.

  2. Beth,
    Thank you! And you and your family are in our prayers as well.

  3. Thank you for sharing.
    love and prayers