In a homeschooling house full of 7 kids & 3 guniea pigs....there is never a dull moment! A lot of people show genuine concern for us and want to know how we are doing, as the road we've left behind was not a pleasant one. So, here I am, to tell some of our stories...share some of our days...and open up a part of our world to you! Come join us on our journey so you won't miss the moments that take our breath away!
Thursday, May 5, 2011
Today was a huge decision day. Emu went back to his Endocrinologist. We already had the test results and his diagnosis, so that was no surprise. Today, was a day of seeing the charts, hearing the facts and getting a thorough explaination of Emu's growth.
Basically...according to the height of myself and Emu's "sperm donor", Emu's projected height is somewhere between 5'4" and 5'6". However, according to Emu's personal growth pattern, his estimated height is somewhere between 5'2" and 5'4" and this is if ONLY he continues to grow at the same rate he is now. They know from his bone age scan, that he will NEVER hit a growth spurt like "normal" kids and they don't expect him continue to grow at the same rate he is now...so, it is likely that he may only be at best 5'2" and possibly even shorter than that. We know that he is growth hormone deficient, but he doesn't qualify as having a growth hormone deficiency. He still qualifies to receive growth hormone therapy, but it is not guaranteed to work as well as it would if he were in the deficiency category. The hope is that with growth hormone therapy we can get him to a height of 5'6" but the chances are very slim and the odds are very against him. To receive the maximum benefit of growth hormone therapy, he would need to recieve the hormone for 8-10 years.
Growth hormone therapy comes with a hefty price tag, which is why insurance companies generally will not pay for the treatment. At $250 per injection ($1,750 per week or $91,250 per year) drug companies will often eat this cost in hopes that after treatment appears successful for a particular patient, the insurance company will then cover the course of the remaining treatment.
After the Dr. gave all of the information a few minutes to "sink" in, she suggested that maybe it would be better to go home and "talk to dad" about it. I immediately said "dad just left"...then I corrected myself and said "well, dad is in prison...I mean..." uggh, I thought I was going to cry. "Can you bounce opinions off of a friend or grandma? You don't have to make a decision today". "No, it's ok...none of them know anything about it anyways".
I was most worried about the side effects some of which seemed very serious. So, we spent some time discussing them and she really put my mind at ease. Diabetes was one of the main things I was concerned about. She explained that any of the side effects are just that...a side effect, not an actual developed health condition. The main side effects are pressure behind the eyes, migraines w/ vomitting, leg pain and diabetes. These would all immediately stop once the medication is stopped. Another main side effect is that his hip could repeatedly come out of it's socket...she reassured me that this is extrememly rare and that in 25 years, she has only seen this once.
I hated that Falcon wasn't there. With no one to veer my opinion and having the weight of the decision on only my shoulders, I decided it best to try and fail rather than not try to do anything at all. At best he could be 5'6" and at worst he could be 5'2" but I won't know if he would have been any taller, if I didn't try.
It will take a month to get everything approved, then a nurse will come and train me how to give him his injections. The doctor warns that the initial stage of adjustment is extremely overwhelming but that if we can make it past that, then his shots will just become a daily part of his routine and soon he will know no different.
I hope that I made the right decision...but I guess I don't have anyone to argue me that I didn't.