Below with her blessing, I share a letter from Kaetlyn's mom, Christine. The letter is beautiful and very personal. She is living another version of my reality, It makes us "sisters."
"Stacie, I share this with you because I do believe we are
"sisters" as only those of us that share this reality can truly
understand what it is to live on the edge with our children on a daily
basis. I know our trials our different, but yet in many ways the same... I
am
always more than happy to share our experiences with others out there
who may be experiencing their own challenges so they too may know that
they are not alone on this journey through the life of a special needs
family. Please feel free to post with my blessing... I
will keep in touch and let you know for sure the final plan once we see
the orthopedic; at the very least I know we will be moving forward
regardless with the hysterectomy.
Love and Miss you Guys!
Christine"
You may recall Kaet's story as shared in these posts:
Letter from Christine dated January 16, 2012
Hope this email finds your family well!
I am writing to let you know the latest on Kaetlyn's "womanhood" issues.
Our
continuing saga of womanhood that began last May...it has been a roller
coaster ride to say the least as we cannot get her cycles (or should I
say lack of)under control. Even using the birth-control pills that have
continuous hormone for 3 months, Kaet was and is still getting her
period every 2 1/2 to 3 weeks and
the days leading to it are horrendous! - The crying and screaming are
enough to make me nuts and nothing seems to help. Once she actually
starts we are at least blessed with a few days of relief and happiness.
Her
gynecologist ran in to us in the parking lot of the therapy center back
in November to see how things have been for Kaet. It was then that I
told her all we have been going through...I wanted to give the pills and
her cycles a chance as I know it can take some time to regulate, so I
did not call her prior to this to let her know what we have been going
through. She calmly let me know that we have other options and to come
see her when we had time. I finally made the appointment after getting
through her latest orthopedic surgery and recovery. It' hasn't even been
a month since
Christmas and Kaet has had to "cycles" ! Enough is enough...
We sat down today
in her office and went over everything we have been though with the
irregular cycles and the fact that we had to change spasticity meds
because the ones she was on (and were excellent in controlling her
spasticity) had contraindications with the use of birth control pills.
We discussed changing to another type of pill, but yet again wouldn't we
be in the same boat was my concern; isn't it highly likely that the
effectiveness of the pill was possibly inhibited by all the other Meds
she is on? This according to the Dr is a valid concern.
Our
next options were surgical: Thermal ablation
(burning out the lining of the uterus) with tubal ligation (typing
tubes; since we know Kaet will never be having children of her own free
will) or hysterectomy (only removing the uterus). We weighed the pros
and cons of each carefully and decided that the hysterectomy would be
the most definitive as it is possible for the lining of the uterus to
grow back after thermal ablation. Please know that I have been
researching and contemplating both of these already and I have to say
this is a SUPER TOUGH decision
to make to have your child go through yet another surgery, but is it
fair for her to have to go through the pain and discomfort of a period
every 2-3 weeks either?
At
this point in time
my mind is made up that we will proceed with the hysterectomy and for
now, we are taking her off the birth control since it is ineffective
anyway, and this way we can get her back on her "good" spasticity meds. I
did mention to the Dr that Kaet will most likely be facing another
orthopedic surgery later this year to secure the other clavicle, so she
suggested and her pediatrician (we saw her today
for a physical) did too that we see about coordinating the surgeries so
she only has to go through it one time and be all done...that is where I
leave off, we will be seeing the ortho at the beginning of Feb for her
follow up from the last surgery so I will see at that time if he is
willing to do it the same time as the hysterectomy.
I
sure hope and pray this all comes together and works out in the end; I
hate
having to make these decisions in caring for Kaets needs, but I don't
know what else to do to to get my girl comfortable...It breaks my heart
either way; seeing her miserable going through the pains of cycles or
going through surgery to prevent them. I feel in my heart this is the
best choice and that maybe Kaet can finally stop hurting in the long
run. I will keep you posted as to our progresses...
Until then, I hope you and the family stay well ...and I am praying for another LONG stretch for Riley with his seizures! :)
Christine
Dear reader, I hope you understand the challenge faced by Kaetlyn's family in an effort to do the very best they can for Kaetlyn's welfare. As special needs parents we face dilemma's that we could never have imagined as we prepared to welcome our precious child into the world. Each child and situation is unique and we do not advocate one decision over another, but must each come to our own conclusions. We share this so that others on our journey will not be alone and so that those just on the outside may understand a little of our experience.
We are all special... Stacie Wiesenbaugh
