On December 16th, all 4 of us hopped on the train and headed to Philly to learn how to give Siena her Growth Hormone injections. This much anticipated day had finally arrived, and we were filled with excitement and nervousness… well, at least I was – I am sure Andy would tell you he was not nervous at all, and I am sure that would not be a lie…”why be nervous” he would probably say. 🙂 The nurse assured me that if I could put an NG tube up Siena’s nose that I could, without a doubt, give her HGH injections. And she was right – after a few practice runs, I gave Siena her first shot of Norditropin. I think I was shaking, and Siena’s face was like “what in the world are you doing to me,” BUT neither of us cried. And I am happy to say that a little over a month later (and a shot 6 nights a week), not a tear has been shed. What a brave little girl we have in our life.
Siena weighed in at 17 lb 10 oz that day, and at her appointment with Dr. Gottlieb yesterday, she weighed the same. Although Siena has not gained any weight, she has grown a quarter inch and we have noticed a big difference in her activity level. She is determined to walk and with the help of the Sure Steps she got last week, I really do think it won’t be long til our baby turns toddler :)….
We will have to repeat sleep studies every 3 months to ensure the sleep apnea does not return and she will have blood tests every three months as well to monitor her GH levels. Her dosage will change as she grows and her levels change.
In other news, Siena had bloodwork and an EEG done this past week to check how her seizures are going… we have noticed a few in the past month or so, so Dr. Gottlieb has increased her morning dosage of Kepra. Did not get the results of the EEG yet, but will post as soon we do.
Annual visit with cardiologist on Monday…. stay tuned.