RACHEL
Rachel's Story
Rachel was born on January 4, 1987 and she made it
clear that she was going to be stubborn from the start, 4 weeks late and in
fetal distress, delivered by "Emergency" C-section, after the Dr. "strongly
suggested" that "mom needed to try harder!" Mom had complications too and after
going "Code Blue" and severe staff infection, another "Emergency surgery", and 9
days of being in the hospital, Mom and baby HAPPILY went home!
When Rachel was only 5 weeks old she was hospitalized (9 days) for Rotozyme Virus. The Dr. said that she was a "Real Miracle" for pulling through that, but Mom already knew she would because we had already thanked God for healing Rachel before He was even finished His healing her body.
When Rachel was about 8 weeks old, mom told the Dr. that Rachel was having spells where she "Acted Funny" and she would roll into a ball and then her arms and legs would "fly out" but, we did not know why this happened, and Rachel would sleep and sleep and SLEEP!!! The Dr. said not to worry, because it was probably "Spasms" but Mom did not think so. Well at Rachel's 3 month check-up, after the Dr. left the room and it was time to go home, Rachel had one of her "Famous Spasms", it was a SEIZURE, and it was a bad one this time! We were sent directly to the Hospital where they did lots of tests and started Rachel on some liquid med's to help control the seizures, (she still averaged about 6 of these "spells" a day) and then FINALLY she got a medication that helped, but at age 10 months, she had another bad spell and had to go back into the hospital for more tests, 9 days again (I think that was supposed to be Rachel's favorite number?!?)
By this time we already knew that Rachel had Neurofibromatosis (type 1) because since mom has it (and many other members of mommy's family) they already were looking for it and sure enough, it was true. They did lots of Brain Scans and EEG's and "Ran Rachel thru the mill" several times. (They spoiled her too!) Well by age 4 we had the "All Clear" to stop the seizure med's!! Outside of some "Spacing Out Episodes" Rachel has not had anymore seizures!!!!
When Rachel was about 6 years old, that is when mom found out for sure that Rachel does have Brain Tumors, but they can not be removed. The main one they worry about, (and she has an MRI every 6 months) is on her Brain Stem. Rachel does have frequent headaches and occasional balance problems.. But, she never complains about it.. she just likes to sleep on those days.
There have been many, many, many trips to clinics and hospitals to: *check this, scope that, probe "here ~ n ~ there".... etc, but this girl always keeps everyone giggling! Between her "normal" childhood illnesses and all the "fun stuff" that comes with her Abnormal Illnesses, she has become one tough cookie!
Her first Major surgery came when she was 12... She had Severe Sclerosis and it was effecting her heart and lungs so it was time to "Fix Her." She had 2 Titanium Rods put in her back and a plate in her chest. They also had to take a rib out so they could graft it to some bone in her spine / neck. Well during this surgery.. The operating room had to call mom on the phone in the waiting room and get permission for another surgery!!!! They saw stuff on Rachel's lung and they needed to see if it was Cancer. Well thank God it was not cancer, but she does have Hystoplasmosis (You get that from bird droppings that are in the air, YUCK) and it can be very serious, but Rachel got lucky! After lots of PT and respiratory therapy Rachel got to go home. Actually, Rachel's stay (Yep, 9 days) was pretty short for what they THOUGHT she would have to stay.
Her next surgery was when she was 13 years old.
Due to Sleep Apnea she had to have her Tonsils and Adenoids out. She got to go
home the next day but she had a very hard time healing. The ENT that did the
surgery said she did not "really" have "tonsils"... he said she had
"Watermelons" and that was why she hurt so bad and did not heal very fast.
The next surgery.. was when she was 14 years old. Rachel had GERD (Severe Acid
Reflux Disease) which was causing her lots of pain and and even the strongest
medications they could give her did not help. They were worried about her
developing "Barrettes Esophagus" (which is cancer in the throat) so they had to
do a Nissen Surgery to help her. We were told to expect 3 days in the hospital
but she spent.. YES.. 9 days in the hospital. Even then she was still very ill
and the "Junk" they were suctioning out thru her nose tube was not clear like it
was supposed to be. :(
Rachel has problems with her Bowels (possibly due to this surgery) so she has
regular med's for that.. when she misses too many doses, she becomes very badly
impacted. She has also had to learn how to do Catheters herself due to her
bladder being very lazy and she sometimes she needs "Help" so she can "GO" and
she wont be in pain from the pressure.
Rachel still has issues with Sleep apnea and has had to have many Sleep Studies
done as well as another surgery (March 16, 2004) where they did some more "laser
work" in her throat. The hospital FINALLY called on July 14, 2004 to say that
study did not go well either (We already KNEW that much) and the Dr wants to see
her again!!! Well we have had a heck of a time getting a hold of them so on Aug.
24, 2004 when we saw the Primary Care Dr. again... we told her and now THEY are
going to get a hold of the Sleep Lab and the ENT to see what the deal is! Rachel
cannot tolerate a C-Pap or a Bi-Pap so we are not sure what the next step will
be???
Rachel also has Asthma as well.
Rachel's most recent dealings have been with dental work, and also Physical
Therapy (Her arms and legs are always very tight as well as back and neck pain)
and she has a growth on her arm that she will soon have surgery to have it
removed. *This may not be a tumor.. they think it is "Vascular Problem" or
something?
Rachel does go to school (3 hours a day) and she is in 11th grade (she tests at
4th and 6th grade level.) She walks for the most part but if we go anywhere that
requires a lot of walking she uses a wheelchair due to respiratory problems,
pain and fatigue.
Rachel also takes medication for depression.. and muscle relaxers for chest pain
(she has had all kinds of Heart Tests.) The chest pains they believe are due to
Skeletal / Muscular Problems, but they still keep a close eye on any changes in
her pains and such.
Rachel has really taught me what it means to take one day at a time and to enjoy
the moment! She is not nearly done with the medical issues BUT.. With her Faith
in God and her "Stubborn Streak"
... I really feel she is going to make one heck of an impact on many lives... I
know she has mine!
Susan R.
Mom to Rachel
Child's Name: Rachel
Birth Date: January 4, 1987
Diagnosis: Neurofibromatosis type 1 and other things
Limitations: No long distance walking
Skill Level: 4-6th Grade Level
Interests: beads and crafts, drawing, reading, coloring
Pets: Cat - Miss Pepper
Address to send small gifts: PO Box 325, Loogootee, Indiana 47553