1/31/13

Doctor Visits

Tuesday afternoon Carla had her Physical Therapy.  Her legs are getting so much stronger and she even went up all of the stairs at our apartment one by one (instead of 2 feet on each step) yesterday! I notice she is just a lot more mobile in general.  It's so fun watching all the "little" daily changes in her.  Her having had only half a heart her whole life there were things about her that I just thought were "Carla-isms"  and didn't attribute the behavior to only having half a heart...  little things like not enjoying writing.  She would always say "My hand hurts!"  and had very messy penmanship.  In a very short period of time her hand control has become so much better that her teacher was astounded by how well she can cut now.  Also, she pays attention to her writing and does a good job.  She is still behind, but is catching up quickly.  Yesterday when getting out of the tub I noticed the way she planted her foot down and stood up  much easier than usual.  She is also eating like a normal person.  She will sit down and eat a tremendous amount of food, compared to usual... and then not eat again for hours!  Her whole life she has always eaten like a bird ALL DAY LONG!  I would spend all day cooking meal after meal for her! One of our transplant coordinator nurses told us that her metabolism  had to work so much harder before, just to keep her body functioning.  So now it is really slowing down and adjusting to the new heart.  Yesterday while getting ready for her appointments, she put on all of her clothes, by herself!  This is huge, as I have had to help her along for all of these years... now I can get myself ready and she can get herself ready too!  It's very liberating to me!  

Yesterday's appointments started with Occupational Therapy, where she made and decorated snowflakes and then did some other art work.  Glitter glue was a big part of the action, because squeezing it is a good hand strengthening skill, and she LOVED the glitter glue!  After OT we headed over for her 9:00 echo, which went well.  After that we headed to a room for the usual vitals, EKG, etc.  We asked and answered questions and Jason (one of our Transplant Coordinators) seemed happy with her progress.  He also went through all of her labs with us, which was nice.  We then saw Dr. Kemna and she decided to cut one of Carla's diuretics completely out and to cut the other one in half as well as decreased her MMF, because the level was a bit high again.  We didn't have her cyclosporine levels at that point but were promised a call later on.  Unfortunately when Jason called after 7:00 last night we were informed that the lab didn't run the cyclo levels, but for some reason ran her tacrolimus levels, which were non-existent because she doesn't take tacro.  A few minutes later the lab called and advised us that Carla needs to come back and give them some more blood, because they don't have enough left over to run her cyclo levels.  Those dirty buggers.  So, we will be headed back to see Hector tonight.  Thank God for Hector, otherwise giving blood would be a big deal!  He makes the process fast and painless, so, it's not that big of a deal.  ... Just mildly annoying.  

Hope you are all having a lovely day!

Jen



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