Update 10/9/11

Hey all.  A lot of people have been wondering how we are doing and wanting an update.  We are doing well right now.  Things are relatively normal around here.  Maddie Kate acts like a very normal baby.  She has been going through a little bit of a colicky phase lately and has been very fussy in the early evening hours.  She usually calms though after her late evening feeding and sleeps very well at night.  She of course still wakes to eat, but then she goes right back to sleep.  I remember Abby going through this phase as well.  From everything I've read, it is just a phase and she will grow out of it.  Abby is actually doing really well with Maddie Kate...even when Maddie is being fussy.  It's funny because I thought Abby would be jealous if I was having to hold Madelyn a lot to get her to stop fussing, but she's not.  In fact, if Maddie Kate is crying and I'm not holding her, Abby makes sure I know that Maddie Kate is crying and I need to hold her and get her to stop.  She does not like Maddie Kate crying at all.  She will scream at Maddie Kate over her cries, "MADDIE KATE! IT'S OKAY! YOU'RE OKAY MADDIE KATE!"

We had Madelyn's blood drawn on Wednesday.  I had Austin look on the computer for the results.  Her neutrofil count was up to 3500 from where it was at 930 the week before.  That means being off the IV ganciclover has helped.  Also her bilirubin was down to 6.9 from 8.0 and her liver enzymes were also down by at least half.  This is all good news.  Madelyn is currently on three different medicines.  One is the oral ganciclover, the second is a vitamin, and the third is called ursodiol which is what is helping her liver enzymes drop. 

Friday I met with a representive from TEIS (Tennessee's Early Intervention System).  This is an early intervention system through the department of education that helps prepare at risk children for school.  Because of Madelyn's hearing impairment, she qualifies for this service.  A teacher will come out once a week and work with Maddie Kate on developmental skills, even as a baby, and will also work with Abby and I on sign language.  We are lucky to live in Jackson which has one of the only two schools for the deaf in the state of Tennessee (the other one is in Knoxville).  The teacher will submit reports to the WTSD (West Tennessee School for the Deaf) and when they feel Maddie Kate is ready, they will have her start attending classes there.  She will start there no later than age two.  Abby and I will also be able to go there to learn sign language.  Madelyn will need this service even if she gets cochlear implants because the hearing is not as good and is not the same with the implants.  She may need to do some signing still in order to communicate.  I guess that is all for now!