Good evening all. Just wanted to send updates about this week of appointments.
Monday Kendall had an appointment with transplant team at Children’s Hospital for a check up. EKG looked good, blood pressure and heart rate good, oxygen level 91% (which is low for us but good for her). According to the doctor there was no need for an ECHO today because she will probably have one when we go to Pittsburgh. We pretty much just talked and caught the doctor up with what has been going on. Plan is to stay on the medications she is on unless we are told otherwise. The doctor also said that a heart catheterization doesn’t need to be done until the 1 year mark which is July-August if she has not had the transplant by then.
Today (Tuesday) we met with the Psychologist and his office did a series of tests on Kendall(4 hours) for memory, comprehension, math, reading etc….Damon and I also had to fill out some papers that asked a lot of questions about Kendall’s mood, friendships, independence, comprehension, tasks, memory etc…OMG
It was eye opening to see how much we had to answer “never or don’t know” to because we help her so much with every task that we don’t really know what areas she is strong in because everytime we see her struggling with something we don’t give her enough time to figure it out or ask us for help before we jump in and help. She is accustomed to us doing it all so of course she is going to sit back and let us do it. I would too. We tell her what subjects are on the calendar everyday for school, basically do her chores for her, read her homework and lessons to her, etc…and haven’t stepped back enough to see if she can figure all of this stuff out on her own. Her school calendar is planned by us, clothes picked out, toothpaste squeezed for her(there are too many other things to name). I realize that she is now a teenager and it is beyond time to make her be more independent and think for herself so that she can one day live on her own. Stepping back is so hard and friend Deb Young is going to have to help me with this!!!!!
This appointment was really eye opening to us. When Damon and I were doing the questionnaire on what she does independently we were just looking at each other like “ummmmm” the only choices are never, always, or sometimes. There were no options that said ‘with assistance!!!’ Yikes
Lord help us lol I am a nurse/nurturer by nature so it’s difficult for me to see anyone struggling to do something, especially my own child. It’s still hard to believe she is not a baby anymore. Pray for me lol
Still waiting to here from Pittsburgh this week with a date for CT Scan
Next appointment is next week with the lung doctor in Detroit for a routine follow-up visit
(if there are typos, I’m sorry. I’m tired and I can’t spell check right now)
xoxoxoxoxoxoxoxoxoxo
Cewanda
#TeamKendallT
#HRHS
#BeKendallStrong
#hypoplasticrightheartsyndrome