Sunday, February 10, 2008

Test result, appts and updates

I'm sorry for not updating sooner.  Things have just been busy and it's been hard to find much computer time.

Cardiology - We met with our cardiologist on Monday.  It was our first appt in 6 months!  What a long time that seemed after being in there sooooo often.  It was a long day - 4 hours there - but a good one.  Eliana had an EKG which is a simple, painless test that she didn't mind at all.  She did well on that.  We saw our card briefly then before heading to get an echo. 

This is where it took a loooooong time.  We answered questions, then it was time for her to get sedated - and she really fought it!  I was surprised at how long she hung in after being given the sedating meds (directly into her tummy too!).  The echo then took about an hour.  There was a fellow there learning and she spent time looking taking pics after the other gal finished. 

Then we went back to see our card.  The great news is that her repairs look wonderful!  She does have some small leakage around one of her valves, but this is not related to her surgery.  This is not a problem at this point, but will be monitored, as will her repairs, for life. 

At one point our card smiled at me and reminded me that he had said that the heart repair would be the easy part - now came the work.  I'm not sure on that though.  Going through the trial of heart failure and surgery was so very hard - frightening and overwhelming.  It was scary.  I'm sure that learning to deal with all of the issues surrounding Down syndrome will also be a challenge - but hopefully not in the dramatic and life-threatening way of heart surgery.  I do know that this did cause me to lean on God in ways I've never had to do.  I would not choose this for anyone, but I can see good that has come from it.  So while the situation wasn't good - it was worthwhile.

ENT - We went to our appointment only to find out that I had the date wrong.  *blush*  What a silly thing for me to have done.  I wrote down the 5th and instead it was the 25th.  Guess we'll be waiting a couple more weeks for news on her hearing.

Therapies - She is doing well.  We are seeing improvements in all areas which is encouraging.

   Physical - She is learning to climb the stairs.  A necessary skill, but not one I'm thrilled about teaching her.  LOL  We have always discouraged this in the past.  She is still working on pulling to a stand.  She can do this on low objects (like me when I lie on the floor) but has trouble with higher things like the sofa.

   OT/Feeding - Improved from last week when her tongue seemed to be in the way.  She is eating about 1/2 of a square container of baby food once a day.  Slow going, I know, but it is progress.  She is doing well with her formula and we haven't used the tube in months!  Oh, her weight gain looked great at a couple of appts this week so I'm encouraged that we will soon get the approval for the removal of the tube!

   Speech - We hadn't seen the therapist in about 10 days and she was really impressed with Eliana's improvement.  :-)  She is pointing to a baby in the book when we ask where is baby.  She is learning and responding to things we are asking which is really fun to see.

I need to go help Eliana so will write more later on the Down syndrome clinic, Chinese New year and more.