Tuesday, October 1, 2013

October 1

Ready for some updates? We've been busy during the last few weeks with various doctor appointments and therapy appointments and family activities. Here's what's been going on:

  • Elsie had an evaluation with a craniofacial doctor to see if Elsie would need helmet therapy to correct her flat head. The appointment literally took less than two minutes, and she doesn't need a helmet. Thank goodness! Her head is improving and should continue to round out as her muscles get stronger.
  • Elsie had her first appointment with the Neonatal Follow-up Clinic. This is a medical clinic with the State of Utah Health Department. Basically, they will follow Elsie for the first few years of her life to track her progress, provide us with support and resources as needed to help Elsie succeed, and also to share her medical data with the Neonatal community for research purposes. During each appointment, Elsie will be seen by several different providers in various medical fields. For example, during our appointment last week, Elsie was examined by a nurse-practitioner, we spoke with a nutritionist, worked with a physical therapist, and spoke with a neurologist. The appointments went well. Developmentally, she's a little behind on a few things with her motor skills. We received lots of helpful information and I was glad to find out what we need to work on with Elsie. There is still also concern that Elsie could develop Cerebral Palsy, as a result of her brain bleeds. But that is something that can't officially be diagnosed until 18 months or so, and until then, we'll keep working with Elsie and helping her to learn and grow. She has overcome so much in her short life, and no matter what the future brings, we love our little miracle baby.
  • Feeding therapy is still going really well. We've shifted focus from getting Elsie to take a bottle, and have instead introduced her to drinking from a cup. We take a very small soft plastic cup like a medicine cup, and mix some milk with a small amount of pureed food to make a thickened liquid. We don't want to have her drink thin liquids from a cup just yet, not until she's better at it. Thin liquids could cause her to choke and that could be detrimental to her learning. Thickened liquids are slower to collect in her mouth and therefore easier to swallow while she is learning. So far, she's done pretty good with it and seems to enjoy it. We are also still working on spoon-feeding purees, which she also enjoys. She thinks it's great fun to blow bubbles while eating, which means that most of the food ends up on the bib or all over her face, but she's enjoying herself while eating, and that's important. She doesn't eat large amounts by mouth, neither with the cup nor with the spoon. She'll take maybe a teaspoon or two. But again, she's enjoying herself and learning to eat by mouth and is mostly successful. Her gagging while eating has decreased a lot. We're really happy with her progress.
  • We finally got an appointment set up with Early Intervention. They were supposed to contact us after Elsie was discharged from the NICU, but for whatever reason, that never happened. I called them a few weeks ago and we are scheduled for an evaluation next week. They'll come to us and work with Elsie in our home, giving us ideas of what we need to work on with her and how we can help her to achieve her potential.
  • During the last few weeks, we've been able to take Elsie with us on different family activities out and about. It's fun to take her with us and we love being a complete family. But . . . cold and flu season is quickly approaching, and we're going to again have to take precautions to keep Elsie safe. She will qualify for special shots called Synagis that will help protect her from the dangerous RSV virus, but she can still catch the virus, which has the potential to put her back in the hospital. Therefore, once the winter sicknesses start up, we'll go back to keeping Elsie at home as much as possible and limit her exposure to small children. We ask that not only for Elsie's sake, but also for everybody else--nobody wants to get sick--if you are not feeling well or have been exposed to someone who is sick, please stay home until you are feeling better. The following sign will be hung up in our home to remind everyone to keep the germs away.


  1. Yea!!! Great updates (although booo for sicky season)
    Hey! Guess what! I'm going to be up at NFP on Tuesdays working with parents so maybe I will see ya!!
    Let me know how early intervention progresses. They always get hit hard with budgets cuts :(

  2. I love seeing how well she is progressing! Happy to hear she won't have to go through the helmet head stage. I always feel so bad for little ones that have to. Sounds as if things are going really well for you right now, I hope that it can stay that way!!