Wednesday, February 18, 2015

Secret package

A mysterious package from Amazon containing this arrived today at our home:
There was no card or any indication who it was from but I'd just like to say thank you to whoever sent it. It made my day and I'm excited to take some "me" time (at some point) to play with it. So, thank you to my anonymous gift giver. I feel loved. 

I know it's been almost two weeks since my last update. Things have been going as well as they can and I'll write a Little Dorrit update in the next few days. (She's five months old now!)

Thursday, February 5, 2015

Evaluations

Lately, things around here have remained pretty status quo, which is always good news for us. Although we haven't really taken Little Dorrit out anywhere, except to doctor appointments, within the last few days, she contracted a cold. We noticed that she seemed to be breathing kind of fast, even in her sleep, so we took her in to see her pediatrician. With her history of chylothorax, her pediatrician went ahead and ordered an X-ray which really put our hearts at ease. My biggest fear was that the chylothoras would return as mysteriously as it disappeared. Thankfully, the X-ray was clear and she really just has a cold with a runny nose and small cough.

Little Dorrit has also received evaluations from speech, physical, and occupational therapists. I feel like each therapist has been very positive about her development in their evaluations. Once our pediatrician formally signs off on Little Dorrit's therapies, she should start receiving them weekly in our home. We are hoping this happens soon to help Little Dorrit progress more in her development. Honestly, I feel like she is doing better and am beginning to feel less anxious about her. Here are some of the things she has been doing:
  • She seems to be awake more. For a long time there, I felt like she was sleeping way too much but now she is definitely awake a lot more now. 
  • She is grabbing toys that hang down from her little activity gym and tries to put them in her mouth (I'm thinking the oral aversion is over now). 
  • Concerning drinking from a bottle, she seems to go back and forth on this. We try to give her a bottle during the day before each of her feedings at 9, 12, 3, and 6 and she will take between 20-50 mls depending on how she is feeling. After her speech therapy evaluation, her speech therapist said she has week cheeks and lip muscles because she hasn't had to use them so Little Dorrit gets pretty worn out after drinking from a bottle.
  • She smiles a lot and we think she is getting really close to laughing but for now, we are glad for her big, gummy smiles. 
  • Although she still can't really hold her head up on her on, I feel like she is gaining more muscle control in her neck and she is getting there. 
  • She doesn't like to be in her bouncer. She either wants to be wiggling flat on her back and kicking out her legs or she wants to sit up. This girl really wants to sit up on her own and even tries to use her stomach muscles to pull herself up. With more therapy and exercise, she'll get there eventually.
  • Her right eye is actually looking a lot better. She opens it more widely now, it doesn't look all red and swollen, and it doesn't leak tears as much. Next week, she has an eye exam scheduled where she will be under general anesthesia. I really don't think we will find out anything new about her eye but it's nice that her eye is looking better, even if she can't see out of it. 
{For those of you who are curious, this is what her Broviac catheter looks like. It's what we use to administer her Ceprotin every day.}