4th Birthday Photo Session

4th Birthday Photo Session

Monday, November 22, 2010

Appointments and ... More Appointments

Today we went to a feeding clinic appointment, meeting with our feeding specialist, our dietary or nutrition specialist, and a pediatrician -- not our usual one.  We met with this trio of peeps to get a sense of where Andi is on her feeding, and what we need to work on.  She weighed in a 11 lbs, 5 oz's...which is up from last Monday's 11 lbs, 2.5 oz's.  We've gradually increased her overnight continuous feed, and now we're working on increasing her daytime bolus.  We got Andi to work not on bottling, but eating some sweet potato puree.  She did rather well, especially considering she did not like last night's apple sauce.  However, it was much better than bottling, that's for sure.  After our feeding clinic, we rushed over to the nurse's station for our first dose of Synagis.  A preventive shot to help protect Andi from RSV.
"Synagis is a prescription medication that is used to help prevent a serious lung disease caused by respiratory syncytial virus (RSV) in infants and children at high risk for severe lung disease from RSV. Over one million children have been given Synagis. It is given as a shot, usually in the thigh muscle, each month during the RSV season."
So... she has to do this shot once a month.  "Yippee!"  (yes, that's sarcasm for those that don't yet speak Anna...)  After the shot, we had to sit there for a 1/2 hour to make sure that Andi didn't have an adverse reaction to the shot.  She actually did great, and didn't cry all that long after the shot, thanks 'pacie'!   Our last appointment of the morning, was a meeting with a physical therapist.  The PT determined that Andi's left side of her neck has tight/short muscles and we need to work on stretching that side.  I have pictures of positions to sit her, hold her, prop her.... all run the risk of the dreaded leaky g-tube.  YEA!  (again, sarcasm, ...at its finest!)
When we got home, one of Andi's babysitters-in-training came over for a few hours for more training & a speck of relief for me.  Lucky for her, Andi was exhausted from a morning of therapy, and she slept most of the time her babysitter was here.  Lucky babysitter...

Andi was able to complete and send out her Happy Thanksgiving cards this weekend to her extra special Doctors & nurses.  Hopefully they all arrive in-time for the holiday.  We are so thankful for all the great care she has received, and she wants them to know how appreciative she is...
yeah... we still owe a bunch of thank you cards... but, Thanksgiving was a little more pressing deadline.  Then, we have to work on our Christmas "holiday" cards... in all our "copious free time."  **screaming laughter**

*trying to regroup from hysterical laughter.*


This weekend, I finally was able to take the past six months of Andi's paperwork and put together her medical binder, so... in case of emergency, there's a binder of medical information to accompany her wherever...

Tomorrow, the community health nurse is stopping in for a visit, and one of Andi's babysitters is coming for more hands-off training... the weather here is 'storm watch 2010' - so, we'll see how much of that actually works out. In the meantime, we have much to work on in-between everything else. 

Next week, we have a few more meetings.  One I'm most looking forward to is a check-up with her cardiologist.  I seriously hope he agrees that she's doing well, and decides to take her off some of these med's!  Andi's cradle cap is much better, with the help of a lot of olive oil.  Her dermatitis is still bad... but, a recovery in progress.  In the meantime, we have organic bananas puree, apples puree, and Andi's current favorite, sweet potato puree. Yummie, Yum, Yum!

1 comment:

  1. Anna, I think you are doing a marvelous job. Hope your Thanksgiving is wonderful. Sounds like Andi has some meat on her now...good eatin'!