Carly continues to get a little stronger each day. She is still pretty tired and spends most of the day sleeping, but during her awake times she is showing improvement. Her right eye can now open almost as wide as her left and she is holding up her head more. To help her right eye get stronger we are starting to patch her left eye for 30 minutes a day giving righty some time to be in charge. Carly's ophthalmologist has also recommended that she start wearing glasses which should aid her vision development. Her first pair of glasses will be tinted to help her deal with the bright outdoors since her pupils are still dilated at all times. She should look pretty cute in her new sunglasses!
Carly had her first post surgery checkup with the endocrinology team yesterday. It was a pretty uneventful appointment and all of her hormone medications remain unchanged. Since Carly lost her pituitary gland during her surgery we will be working very closely with this team in the coming years. The pituitary gland is responsible for producing or controlling many of the body's hormones including:
- growth hormone
- thyroid hormone - which helps control heart rate, temperature and metabolism
- ADH - which controls your sodium level by telling your kidneys to hold on to water and stop peeing
- ACTH - which triggers your adrenal glands to release cortisol to control blood sugar and blood pressure levels
- estrogen
- progesterone
- oxytocin
Yes, it's a long list. Carly will need all of these hormones to be managed with medications for the rest of her life, some with shots and some with pills. Fortunately this can be done and the endocrine team at UCSF is among the best in the world. We have been replacing several of these hormones since Carly's first surgery in October and we are comfortable managing them and know that Carly will be able to handle it too. I already checked, and none of this would prohibit her from running a marathon or finishing the Ironman. :)
Love, Brad
7 comments:
Brad
You always sound so upbeat and positive .......... how refreshing. Most would sound discouraged and exhausted. Carly is one lucky girl to be born to a fantastic set of parents. Happy Mother's day to Christa. I'm sure a smile from Carly is the only gift she'll need. Brad, your mother must be very proud of you.
Thanks for the update! Glad to hear that the pituitary gland functions can be controlled fairly easily. I bet carly looks adorable as a little pirate! And she'll look equally as cool in her new shades. Still sending strength, love and healing vibes your way. Go Carly Go!
"Uneventful" is a good thing. :) Glad to hear it's going well and will be manageable for Miss Carly. Continuing to send positive energy your way. Have a wonderful and blessed Mother's Day!
The Nelson's rock! Thanks for keeping us up to date. Love you guys.
Michele
These baby steps make me so happy and so proud of little Carly! Moving forward slowly but surely! Thank goodness for modern medicine. Big squeezes for the Nelsons.
Karen
Because of you, Christa and sweet Carly I have developed a new-found respect for the power of prayer, hope and positivity. And now, reading your list and really thinking about what that means, I also feel an immense new appreciation for medical researchers. Scientists are really unsung heroes arent't they?...each shot, each pill, each diagnostic test that lets you know what she needs, is a product of people's hard work and dedication and I suddenly feel so grateful to them all for giving Carly this opportunity. And grateful to Carly and her parents for teaching us all so much along this journey.
Sending you all lots of love always!,
Sheila
And she is clearly well on her way! My sister had glasses and a patch on her eye since she was 1 and boy was she cute! I know Carly will be too. :)
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