Saturday, July 7, 2012

Appointments

appointments and more appointments



 enjoying the weather outside at Children's

sisterly tug of war

Of course Ryan is very involved in Alex's care, therapies and daily life.  She's a free spirit and always testing boundaries so we have to rein her in when we are out and about  

Thursday, July 5, 2012

Time for an update

Alex had a four month hiatus from going to school during respiratory season and had a home bound teacher work with her for a couple hours each week to keep her up to speed until we decided it was time to send her back. She finished out the last month of school in her classroom.  She continues to work with a teacher as well as OT and PT each week in-home.  She's probably the busiest three year old I know.  


Alex's g-tube has been problem free and we are happy to see a positive change in her respiratory condition.  Initially we took Alex off her oxygen for a couple hours each day and then for longer periods and now she is completely off while awake.  The g-tube has also made it so much easier to keep her hydrated, especially with her no longer having to gulp down pudding thick milk and juice everyday.  All of her liquids and medications go through her tube and she is still eating solids by mouth. The bipap however has been a different story and it's been a long few months with little sleep.  She wakes up several times a night, sometimes four or five times.  It's most likely just going to take time for Alex to adjust to sleeping with something that is so uncomfortable.  She has another sleep study coming up this summer and best case scenario is they tell us she no longer needs the bipap at night.  We'll see. 

Ryan is still our feisty one and growing up so fast.  She climbs on everything and keeps us on our toes.  She plays well with Alex and they really do enjoy each others company.

I'm still working at Children's and making my way through nursing school.  I'm currently in my pediatric rotation and doing my clinical hours at the University of Colorado hospital in the neonatal intensive care unit (NICU), which I love.  I'll have a little break in August before I start my last and final semester this fall.  I look forward to graduating in December and finally becoming an RN.  I know Jimmy is excited too as it's been a long few years for him as well.  He's been amazing about taking on additional responsibilities at home and with the girls whether I'm doing long clinical hours, working weekends or studying. Life is busy but good for the Diffee's.