Thursday, December 3, 2009


Lily had to get her Synergis (RSV) shot yesterday. Talk about an expensive shot! Just one dose is almost $2000. She gets one monthly for the RSV season. I'm glad she's getting it. Gabriel had RSV two years ago--he was three months old--and we were giving him breathing treatments every two hours. Luckily, if you can call it that, we were on Christmas break. Unfortunately, we had to miss going to my Aunt Trisha's house on Christmas Eve. Didn't want to infect the other babies there.
I'm disheartened by this appointment. Lily has lost a little weight. She was at 10'2" previously, but yesterday, she was at 9'12". I'm not pleased with that weight loss, nor was I wanting to hear that if she doesn't gain back that she'll either have to have supplement with a bottle (wouldn't be so bad if Lily would take a bottle) or a tube. We're trying fruits and veggies, but Lily isn't really interested. I wonder if it's taste or texture, but she does not like things in her mouth. All she will tolerate is vibrating toys, so the speech therapist is going to try a vibrating spoon next week and see if she'll accept food that way.
Lily's weight loss concerned me in a different way. Prior to last night, for two nights in a row, I had fed her (in bed), and when I went to move her, her head was soaked with sweat. The cardiologist warned us about profuse sweating during feeding and weight loss and heart failure. Those words hauntingly echoed throughout the day. The one hope I had was that Lily was hot in her thick pajamas, sandwiched between our body heat with the blankets on top. I put her in a lighter material last night, and I'm pleased to announce that there was no sweating! I hope that rules out heart issues. She's been doing so well, not needing medicine, that we had dismissed problems in that area and focused more on keeping her well.
Speaking of keeping her well. . .I'm terrified of this H1N1. Fortunately, I was able to get a vaccine the other day. One of my biggest fears was getting swine flu and not being able to feed Lily. What would we do?! Now I'm waiting to get Lily and Gabriel vaccinated. I had read somewhere that it's pretty deadly to children with brain issues. That, besides a weaker immune system, puts Lily at risk. Gabriel's past RSV, I believe, puts him at risk. So we're trying to be diligent with washing hands and staying healthy. In the meantime, we wait.


  1. praying for your discernment in the vaccination concerns for lily. offering up my day for your heart in this worry and fear. searching for words to offer consolation but just want you to know i'm following, walking with you, and praying you along the way.

  2. Hoping Lily gains/maintains weight! hopefully she'll like the vibrating spoon/z-vibe! hopefully your therapist can give you lots of ideas on how to help encourage her to put things in her mouth that are a positive thing! Remembering you all in my prayers!

  3. Hope she gains quickly! I hate that you're having to worry over all of these vaccinations and diseases and I'm sure money too. But thankful Lily is still with you for you to worry about. =) Keep the faith--- you're doing an awesome. Better than I ever could in your shoes. God bless.

  4. Always thinking and praying for Lily and your family. Hoping that she soon starts gaining weight again and stays healthy. Shannon

  5. I'll be praying for her weight gain! Glad you were able to get her shots too..praying for everyones health in your family too :) Stay well and Happy Holidays :)