Making decisions for oneself is often easier than making them for our children, and we wanted to share our thoughts and fears for the coming months.
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| Yikes, I don't like the sound of this. |
Brielle is small, there is no denying it, but she does not
let that stop her from doing what she wants. Brielle will often say I am small
and that is okay, I want to be small. As
parents we have had to decide, do we just let her keep growing at her own pace
or do we intervene with hopes that she will be approved for growth hormone
injections. She is on her own curve, far below children her age.
The road to make this decision has not been easy and has
been full of tears and second thoughts.
We want the best for Brielle now and in the future so the question has
been do we want to intervene now so she is not the one picked on at school for
being small. Do we intervene now so that in 8 years she does hate us for not
helping her grow. Or do we do watch and
wait so we can avoid the doctors and needles. . . If we do not intervene her
projected maximum height is 4’10.
We decided that since Brielle is still not on the growth
chart at the age of four that we would take her to a pediatric endocrinologist.
The endocrinologist confirmed that she is not growing at the rate of “normal
kids” and we should consider further testing to decide of growth hormone is
right for her.
After many days of
talking about it, thinking about it, crying about it we decided to proceed.The first test was a bone age x-ray of her hand. Her x-ray
showed her bone age to be 3 months younger than her actually age meaning she
does not have a lot of make- up time to grow.
The second test was blood work which I must say I was super
impressed at how well she did. Brielle does not like going to doctors (due the
frequency she was seen / monitored her first 2 years of life) so I was expecting
the worst. She did not cry or flinch, just watched them draw her blood. She
gave me the sad puppy eyes after and would not speak to me on the way home
which broke my heart.
The third test was supposed to be a IV infusion challenge in
which she would be administered two different medications and her blood would
be drawn to see if her body naturally produced enough growth hormone in
response to the stress on her body. So
after visiting with the provider, getting checked in at the infusion center the
insertion of the IV started… well was supposed to start.
Poor Brielle was stuck 4 times in 4 different
locations and they were still not able to get her IV started. At that point the
three of us were in tears and decided enough is enough and we would call it a
day.
We are hoping and praying that the insurance will cover her
injections without us having to try and repeat the IV infusion challenge.
The fourth test is a MRI on Wednesday May 11th of her head to ensure she does have
a tumor on her pituitary blocking the release of growth hormone. She will be sedated which requires an IV to
be started. As you can imagine this already terrifies us. We have requested a
PICU nurse of life flight nurse be present to insert her IV. So say a prayer
for all of us on May 11th.
So if all goes well and she is approved for the growth
hormone injections we will have to give her a shot DAILY!
We are hoping that Brielle won’t hate us and we will end of
looking back on all of this thankful that we were able to help her grow.
