Tuesday, October 23, 2012

An update

It's been awhile since I've done an update because things have been status quo. Audrey started preschool the day after her birthday. She goes for 2 hours a day 5 days a week. While she's there she gets her PT, OT and speech therapy. She's with 5 other kids who have various delays from muscular dystrophy to speech delay. She also has an RN with her at all times. She loves going to school now! It wears her out, she usually sleeps most of the day after school, but she's learning to interact with other kids and many other things. Her speech has improved dramatically which is great for everyone. We hope she will continue to build up endurance. Out of the last eight weeks she has only been able to go to school for 5 days once. Well, it's good to have goals!

Medically there has not been many changes. She is still on her TPN and still only getting 17mls/hr of feeding. Each time we try going up to 18 her gut completely stops but we keep trying hoping one day it will work. She was seen by surgery today to discuss getting a new, more permanent central line placed. I have been avoiding this as the thought scares me but here we are. Central lines have a higher risk of more serious infections. However, Audrey has had continuous problems with her current line which has lead to a high risk of an infection as it is. So November 6th she'll be admitted with surgery planned on the 7th. She stay overnight after surgery because of her pulmonary stuff and if all goes as planned home on the 8th. Fingers crossed we don't get trapped :)

Aside from the line and feeding stuff things are mostly going well. She is growing and getting stronger all the time. She is sweet and sassy and so full of life that we are great full for all the medical advances letting her thrive with us at home. We hope that this line placement will be the last procedure she will need for a long time. She hasn't been inpatient since July so maybe we are finally on the right track with her! Also her pediatrician brought up she hasn't had any new symptoms from her mitochondrial disease since May so maybe she has reached a plateau with her disease. That being said we are starting cold a flu season and with every cold and sickness she gets she is a risk for disease progression. Needless to say, I am very nervous about how this winter will go.

We are planning on going to Disneyland for Mickey's Halloween this week so pictures to follow. Audrey will be dressed as Rapunzel, surprise surprise ;) I will update after her survey in 2 weeks...