Sunday, December 4, 2011

"No reason to think she won't see 20/20!"

That's what the Ophthalmologist told us when we went in for Summer's check up on Wednesday. There will still be holes in her vision, specifically in her peripheral, and we suspect red/green color blindness...but considering that Summer was virtually blind when we discovered this tumor, we'll take it!

The ophthalmology appointment was surprisingly uneventful. Jason and I, on the way in, were talking about how these are our least favorite appointments because something about them just really sets Summer off. She does really well with all the other doctor's appointments, but for ophthalmology she's usually quite uncooperative, and fights every step of the way.

This time around, she did great! They even managed to get a really clear picture of her optic nerve using an HRT, something we've tried to do unsuccessfully two other times. This website about the HRT says: "One problem is that, even though the test only takes a couple seconds to perform, any patient movement (including moving the eye, blinking, or moving the head) will disrupt the laser's path, impairing the quality of the image." As you can imagine, it's really tough to get a three-year-old to hold her eye completely still for any period of time, but Summer managed!

We also saw Endocrinology on Thursday to talk some more about Growth Hormone now that her stim test shows her levels are definitely low. That test itself, which we did a few weeks ago, was not fun - we spent about 4 hours in the infusion center; it took two attempts to get the IV in, and the drug they use gave Summer nausea and vomiting. But it was a necessary evil, according to the insurance companies.

We went over the benefits and risks of growth hormone therapy again, and agreed to move forward. Without it, Summer will still likely grow, but growth hormone will help her grow the right way - with the appropriate bone density and body composition.

On Thursday, they did an x-ray of Summer's hand to measure her 'bone age,' which they'll use to help determine her dose. It's my understanding that they'll take these x-rays periodically throughout her treatment as well as a way to monitor her growth and the effectiveness of the treatment.

From here, we decide which hormone delivery system we want to use - there are TONS of options, and of course the brochure for each one of course makes it out to be the best and easiest system out there - and then we'll get final insurance approval. Depending on how long that takes, we're looking at starting the injections near the end of this year or early in January.

Once the final insurance approval comes in, they'll bring us in to the clinic and show us how to administer the injections, which will be given once a day at bedtime.

On Thursday of this week, we'll have Summer's 3-month MRI so I'll post again soon!


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  2. I have craniopharyngioma and sometimes take growth hormones. They are easy to do. I have a nordi pen (from Nordotropen) and all I do is screw the needle on, cock the pen back into the sleeve I have for it, hold it against my thigh and then press the button which pushed the needle. That's I have to do to take my growth hormones.
    If you want to email me: