Day to Day

I spoke with Samantha today about posting on her blog since it has been a couple weeks since her last post. She said "I have school, homework, art class and now I have to study Hebrew for my bat-mitzvah."  She feels overwhelmed by the many demands our 12 year old (and middle-schoolers) children have, and frankly I don't blame her.

Samantha has begun the traditional "tween" time of wanting to be a kid and also longing to be a teenager at the same time. She knows there are more responsibilities and demands, and welcomes them, however she also knows that with responsibility comes the maturity to be able to handle it.

It's been almost 240 days of Samantha taking daily shots, and she is still such a trooper. She doesn't complain often about her day to day routine as it has become part of her life. I deeply admire her sense of self and "just power through it" attitude, for it is still difficult for me to watch her every night take her daily dosage of HGH.

As a parent, it's heartbreaking for me to see her give herself shots. What is worse is the feeling I have when she wants me to give the shots to her because her stomach has too many small bruises from self-administering her medication. Needles make marks and at times bruises no matter how good one is at administering shots. When that occurs I tell her to give her stomach a break and I give the shot to her in the arm so her bruises have a chance to heal. They heal within a few days, however if you think about administering one shot per night, at the end of one week you have a child with up to 7 bruises, all healing at different times.

Yesterday was a rough day: I had spent 30 minutes arguing with the specialty medication company which provides us her shots explaining my utter frustration that HGH is a necessary medication for Samamtha. "My kid can't grow the way she is supposed to without this medicine. I don't think you understand. This is not for vanity. This is for her to reach a normal adult height. She won't grow without it."

In an upcoming blog I will continue describing the discussion I had about the cost of this medication and how tragic it is that those whose insurance carriers don't cover it (or refuse) that it is cost-prohibitive for virtually the entire population.

Samantha is steadily growing which is in stark contrast to where she was a year ago. She will unlikely make it to where she "should be" if her pituitary gland was working as it should; however if she can keep the pace she is on now for another 2 years she will get pretty close.