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.
Sunday, February 28, 2016
Friday, February 12, 2016
222 Days of Growth Hormone Therapy
It has been 222 days for me that I have been taking growth hormone therapy shots and this has changed everything in my life. I am so proud of myself.
Some people can make fun of me and I don't like it. Others ask me "is it worth it to sake shots?" Well, the answer is clearly YES, it is totally worth it.
Sometimes I feel a little left out but I know that all of the medication I take does not hurt me, it helps me which is why I have been taking it for 222 days. I think I have grown about 3 inches in 6 months and I feel taller now. My doctor is so proud of me and says my growth progress is amazing.
Today I needed to take another blood test. I take them every two months to see whether there is enough growth hormone medication in my body and if I need to increase the dose of my medication. I don't like going to take my blood tests and also know that it's really important so my doctor knows I am doing okay on the medication.
I have been told that I have inspired and changed so many people's lives who have read my blog. I am so grateful to them because that inspires me to keep writing and keep fighting.
Some people can make fun of me and I don't like it. Others ask me "is it worth it to sake shots?" Well, the answer is clearly YES, it is totally worth it.
Sometimes I feel a little left out but I know that all of the medication I take does not hurt me, it helps me which is why I have been taking it for 222 days. I think I have grown about 3 inches in 6 months and I feel taller now. My doctor is so proud of me and says my growth progress is amazing.
Today I needed to take another blood test. I take them every two months to see whether there is enough growth hormone medication in my body and if I need to increase the dose of my medication. I don't like going to take my blood tests and also know that it's really important so my doctor knows I am doing okay on the medication.
I have been told that I have inspired and changed so many people's lives who have read my blog. I am so grateful to them because that inspires me to keep writing and keep fighting.
Sunday, February 7, 2016
Another Inch!
We rushed to her endocrinologist appointment at the end of the day, fearing there was not enough time to be seen by her doctor. Thankfully he waited for her arrival.
She grew - another inch. A miracle.
Samantha sees her doctor who is tracking her progress and prescribing her growth hormone therapy every two months. At these visits her height and weight is tracked, along with determining whether her medication needs to be increased. Samantha doesn't mind visiting her doctor; in fact, it becomes a comedy show from the time she arrives to the moment she leaves. The staff and her doctor all enjoy speaking with her about school, her newest art painting, and they always ask about her blog.
I am always nervous when we visit her doctor; for I hope that Samantha's body is positively responding to the medication, that there are no negative side effects to taking it upon her, and I pray that she continues to have as much time as possible to take the medication.
No one knows how long a person needs to take growth hormone therapy; it depends on a variety of factors: whether one's body responds (and continues to respond) to growth hormone treatment, the onset of puberty (which closes the door to the natural end to growing in height), and finally the "bone age" of a person (vs one's chronological age). Those who have a young bone-age will have more time to grow. Those who have that of his/her chronological age usually mirror the curve doctors plot one's progress in growth, and those with an older bone-age will grow for a shorter period of time because the bones only have so much room within the "growth plates" to grow.
The unknown is very challenging:
What is her expected height?
How much longer will she take this medication?
What are all the long term effects?
Will she continue to grow at the pace she has?
I don't know.
Samantha is doing amazingly well in so many ways; however what people don't know is that growth hormone treatment can stop working at ANY MINUTE, without warning, and without any explanation.
Despite the many unknowns about the path we are traveling down; I am inspired by Samantha and her outlook on taking this opportunity and creating much confidence in herself and impacting her community. All you have to do is read her blogs from when she first began "Seriously Samantha" to know that she is a better person for having this experience, as are we all in our family.
She grew - another inch. A miracle.
Samantha sees her doctor who is tracking her progress and prescribing her growth hormone therapy every two months. At these visits her height and weight is tracked, along with determining whether her medication needs to be increased. Samantha doesn't mind visiting her doctor; in fact, it becomes a comedy show from the time she arrives to the moment she leaves. The staff and her doctor all enjoy speaking with her about school, her newest art painting, and they always ask about her blog.
I am always nervous when we visit her doctor; for I hope that Samantha's body is positively responding to the medication, that there are no negative side effects to taking it upon her, and I pray that she continues to have as much time as possible to take the medication.
No one knows how long a person needs to take growth hormone therapy; it depends on a variety of factors: whether one's body responds (and continues to respond) to growth hormone treatment, the onset of puberty (which closes the door to the natural end to growing in height), and finally the "bone age" of a person (vs one's chronological age). Those who have a young bone-age will have more time to grow. Those who have that of his/her chronological age usually mirror the curve doctors plot one's progress in growth, and those with an older bone-age will grow for a shorter period of time because the bones only have so much room within the "growth plates" to grow.
The unknown is very challenging:
What is her expected height?
How much longer will she take this medication?
What are all the long term effects?
Will she continue to grow at the pace she has?
I don't know.
Samantha is doing amazingly well in so many ways; however what people don't know is that growth hormone treatment can stop working at ANY MINUTE, without warning, and without any explanation.
Despite the many unknowns about the path we are traveling down; I am inspired by Samantha and her outlook on taking this opportunity and creating much confidence in herself and impacting her community. All you have to do is read her blogs from when she first began "Seriously Samantha" to know that she is a better person for having this experience, as are we all in our family.
Tuesday, February 2, 2016
Ouch . . .Mom Forgot to "Prime"
It was a night just like any other night . . . however this one ended with a bit of blood and a few tears.
Samantha was exhausted right before bed, and instead of giving herself her own shot she asked me to give her it in her arm. I removed the "pen" which contains her medication in it from the refrigerator, as I always do when assisting her with her shots, wiped the top of the dispenser with an alcohol wipe, and twisted on the needle. I dialed the dosage on the bottom of the pen; again, just as one is supposed to do so that the appropriate amount of medication is given when the shot is administered. I wiped Samantha's arm with an alcohol wipe to ensure the area was clean and thereafter pushed the button on the pen for the medication to be released.
"OUCH" Samantha yelled. We looked at her arm as a few drops of blood fell down the side of her arm. I then remembered the one step I forgot to complete . . .
Before using a new pen of medication one needs to "prime" it; which entails ensuring that any air where the medication is contained has been removed. There is a specific process involved in completing such, and thus far I have remembered this step each time Samantha has needed to use a new pen of medication. What I forgot was that the night before when I realized she had used all the medication in the pen I had Samantha place the used pen in her biohazard box and I placed a new pen filled with medication in the bag she uses to store her pen in the refrigerator WITHOUT priming it first.
The result: the first shot Samantha received was filled with air. Placing air underneath one's skin using a needle hurts and results in a tad of bleeding. What is interesting is that when Samantha takes her medication nightly, she rarely bleeds; however her skin bruises every single time she has an injection of medication. It takes several days for the bruise, the size is slightly smaller than a dime, to disappear. Even 200+ days later I shutter seeing her upper arms and stomach with tiny circles of bruises of various colors on her skin.
Samantha shed a couple tears; not many. I shed them for her.
Samantha was exhausted right before bed, and instead of giving herself her own shot she asked me to give her it in her arm. I removed the "pen" which contains her medication in it from the refrigerator, as I always do when assisting her with her shots, wiped the top of the dispenser with an alcohol wipe, and twisted on the needle. I dialed the dosage on the bottom of the pen; again, just as one is supposed to do so that the appropriate amount of medication is given when the shot is administered. I wiped Samantha's arm with an alcohol wipe to ensure the area was clean and thereafter pushed the button on the pen for the medication to be released.
"OUCH" Samantha yelled. We looked at her arm as a few drops of blood fell down the side of her arm. I then remembered the one step I forgot to complete . . .
Before using a new pen of medication one needs to "prime" it; which entails ensuring that any air where the medication is contained has been removed. There is a specific process involved in completing such, and thus far I have remembered this step each time Samantha has needed to use a new pen of medication. What I forgot was that the night before when I realized she had used all the medication in the pen I had Samantha place the used pen in her biohazard box and I placed a new pen filled with medication in the bag she uses to store her pen in the refrigerator WITHOUT priming it first.
The result: the first shot Samantha received was filled with air. Placing air underneath one's skin using a needle hurts and results in a tad of bleeding. What is interesting is that when Samantha takes her medication nightly, she rarely bleeds; however her skin bruises every single time she has an injection of medication. It takes several days for the bruise, the size is slightly smaller than a dime, to disappear. Even 200+ days later I shutter seeing her upper arms and stomach with tiny circles of bruises of various colors on her skin.
Samantha shed a couple tears; not many. I shed them for her.
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