As the title of this post states, Friday's visit to cardiology
was boring. We like boring! We were told that Izzy's echo (pictures
of her heart) looked about the same. Her pulmonary artery pressures
remain approximately 40 mmHg (too high, but not drastically high).
Her heart looks about the same size (the walls of the right atrium
were so large that I could barely see a cavity for blood to enter,
but that is the same as before). The pulmonary function remains
about the same--conduit wide open, mechanical valve working well,
pulmonary regurgitation and tricuspid regurgitation (moderate)
remains the same. Dr. Cutler is not changing anything.
This means, of course, that Dr. Cutler is not changing anything. No additional damage is good, but no improvement is no improvement. I didn't really think Izzy had improved, but I HAD hoped. Before school started and before vacation, she seemed to be doing really well to me. I even stated publicly that I thought she had improved. Silly me :(
There was one thing that Dr. Cutler noted as "new", but it wasn't heart related. At least she didn't think it was heart related. Dr. Cutler noticed that Izzy's lungs sounded differently, such that she believes the right is perfusing worse than the left. That is very odd since Izzy's left lung is the truly messed up lung and her right is only moderately messed up. Dr. Cutler said Izzy has to follow up with Dr. Doshi--pulmonology. I laughed at that. I always laugh at that. The two doctors are constantly sending us to consult with the other. Dr. Cutler admitted it is extremely difficult to tell the culprit with Izzy, but she has no answers, so maybe Doshi will (we saw him in August!)
Other than that, we are still struggling with Izzy's poor behavior. We know so much of it relates to her high expectations for herself and her feelings of loss, anger, and sadness over her situation. Knowing this doesn't help when I hear Izzy telling me she ended up on red in school today or when I get called to the principal's office because Izzy threw chairs and kicked other kids because she made a mistake on an art project. I'm so tired of having to take away privileges. Well, technically, we are not taking away privileges, but taking away beads from a jar that should she ever fill it will get her a special treat. I so want to fill that jar and give her a special something so that maybe she'll try to behave more. Yet, I fill the jar with large handfuls and only remove small and still the jar won't fill. We talk about her choices and how they make her feel and others feel. She understands when she is rational, but she goes irrational so easily and without an off button. How can we blame her? Any adult facing the same situation she is would have the same feelings, but know how to handle them better or at least direct them properly. You are supposed to learn to cope with death from the loss of a pet, not from facing your own mortality at 5.
We had the 3rd Annual Congenital Heart Walk of Southeast Michigan on Sunday. It was huge day and a wonderful event (even though it rained a lot). Team Izzy raised almost $4000 and the entire walk raised about $100,000!!!! The kids had a wonderful time for the most part. There was balloons animals, beads for making jewelery, and the kids got to welcome everyone to the walk!
Izzy even got to walk with her boyfriend!
There was one moment during the rally for the walk that was very real and very hard for all of us. One of my friends and her family went on stage to pay tribute to their daughter and all of the children and adults whose lives were cut short by congenital heart defects. Izzy watched from her Daddy's shoulders as they released balloons and she began to cry. I grabbed her and hugged her close. Her tears calmed, but the sadness remained for a while.
A very real reminder that children have complex, deep emotions. Later in the day, she told us she was just so sad for all of the babies and kids who had died.
This means, of course, that Dr. Cutler is not changing anything. No additional damage is good, but no improvement is no improvement. I didn't really think Izzy had improved, but I HAD hoped. Before school started and before vacation, she seemed to be doing really well to me. I even stated publicly that I thought she had improved. Silly me :(
There was one thing that Dr. Cutler noted as "new", but it wasn't heart related. At least she didn't think it was heart related. Dr. Cutler noticed that Izzy's lungs sounded differently, such that she believes the right is perfusing worse than the left. That is very odd since Izzy's left lung is the truly messed up lung and her right is only moderately messed up. Dr. Cutler said Izzy has to follow up with Dr. Doshi--pulmonology. I laughed at that. I always laugh at that. The two doctors are constantly sending us to consult with the other. Dr. Cutler admitted it is extremely difficult to tell the culprit with Izzy, but she has no answers, so maybe Doshi will (we saw him in August!)
Other than that, we are still struggling with Izzy's poor behavior. We know so much of it relates to her high expectations for herself and her feelings of loss, anger, and sadness over her situation. Knowing this doesn't help when I hear Izzy telling me she ended up on red in school today or when I get called to the principal's office because Izzy threw chairs and kicked other kids because she made a mistake on an art project. I'm so tired of having to take away privileges. Well, technically, we are not taking away privileges, but taking away beads from a jar that should she ever fill it will get her a special treat. I so want to fill that jar and give her a special something so that maybe she'll try to behave more. Yet, I fill the jar with large handfuls and only remove small and still the jar won't fill. We talk about her choices and how they make her feel and others feel. She understands when she is rational, but she goes irrational so easily and without an off button. How can we blame her? Any adult facing the same situation she is would have the same feelings, but know how to handle them better or at least direct them properly. You are supposed to learn to cope with death from the loss of a pet, not from facing your own mortality at 5.
We had the 3rd Annual Congenital Heart Walk of Southeast Michigan on Sunday. It was huge day and a wonderful event (even though it rained a lot). Team Izzy raised almost $4000 and the entire walk raised about $100,000!!!! The kids had a wonderful time for the most part. There was balloons animals, beads for making jewelery, and the kids got to welcome everyone to the walk!
Izzy even got to walk with her boyfriend!
There was one moment during the rally for the walk that was very real and very hard for all of us. One of my friends and her family went on stage to pay tribute to their daughter and all of the children and adults whose lives were cut short by congenital heart defects. Izzy watched from her Daddy's shoulders as they released balloons and she began to cry. I grabbed her and hugged her close. Her tears calmed, but the sadness remained for a while.
A very real reminder that children have complex, deep emotions. Later in the day, she told us she was just so sad for all of the babies and kids who had died.
I don't want to end on a sad note, so I will give you a video of
Izzy at the doctor's office a week ago Saturday (her first
antibiotic didn't work and she had to get a new one).
Yes, Izzy ends all videos that way!
And for those who cannot view videos, a picture of Izzy as Minnie from this past weekend.
Thank you as always for supporting us and checking in on our sweet girl,
Mel
Yes, Izzy ends all videos that way!
And for those who cannot view videos, a picture of Izzy as Minnie from this past weekend.
Thank you as always for supporting us and checking in on our sweet girl,
Mel
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