Alexis was born on Jun 11, 1994. At birth she weighed 6 pounds 9 ounces.
She was 18 and a half inches long. Her eyes are brown and her hair a reddish blond.
Her blood type is A positive.
Alexis' chronological ACM story-
- Doctors noticed a problem with her eyes the day after her birth. Her
parents were advised to keep an eye on this problem. Alexis began wearing
glasses at the age of 9 months and continues to wear them today.
- The soft spot in her crown closed at 5 months. The doctor told her parents
that if her head circumference didn't grow, they would operate and open it back up.
However, it did enlarge.
- She didn't sit-up until the age of 8 months.
- She didn't start walking until the age of 16 months.
- Vomiting was a big problem from the time she went from nursing to milk.
This remained a problem. Tested for allergy to milk. Test was negative.
- Always stumbled. Her balance was never good even after she started
- Speech was never clear. When she was a year old, she spoke her first
word... which was Mom. She is soft spoken even to this day.
- Would not sleep alone and breathing was always a problem. She would take
two breaths and hold it for about 14 to 16 seconds. Diagnosed with sleep
apnea. It is central as opposed to obstructive, and caused by the ACM. She was given a sleep test and paused 1,262 times in one night. Shallow respiration.
- Rodo virus twice which required I.V. and antibiotics.
- Within her first three years before the ACM surgery, she was in the
hospital 12 times from dehydration from vomiting. Vomiting and off-balance are
two of the biggest clues that the child might have ACM.
- Alexis had Pneumonia in March of 1997. Almost lost her. It probably developed
- Swallowing is a great problem and remains so even after the ACM surgery.
- Parents took her to a chromosome specialist to see what might be wrong.
Results were normal, so an MRI was suggested.
- MRI was given and it showed that Alexis had ACM Type 1. She also had a
mild case of hydrocephalous.
- Doctors recommended surgery immediately. Diagnosed in July 1997 and
operated on for the ACM on August 28, 1997. Posterior fossa decompression.
- First operation on 8/28 showed extremely large cerebellar tonsils. Instead
of tucking them, they were amputated. There was also a tumor. Doctors
felt that the amount of hydrocephalous was not significant enough for a
shunt. The cerebellar tonsils had gone into the spinal column. Surgery lasted
- After the first operation, Alexis was up and around and able to walk with
assistance. After 5 days, she became lethargic and began vomiting. All
she wanted to do was sleep. This was a warning that she was developing
water on the brain. Vomiting and sleeping were signs that she was in
grave danger. But the nurses didn't know what her usual energy level was
like and didn't realize that this child was hyper-active. She had
regressed in motor skills to the level of a 3 month old.
- Finally, Alexis' mother, realizing that she was loosing her child,
insisted that the neurologist look at her. The neurologist immediately called for the
surgeon. An MRI was immediately ordered and Alexis was rushed to surgery.
- The MRI showed that she had hydrocephalus and would have died within
24 hours if a shunt had not been inserted. Date - Sept. 6th.
- Sleep studies were performed confirming that she has sleep apnea. She was
on a respirator for a week after the 2nd surgery. Required a feeding
tube for the next 2 months. Started rehabilitation to regain her strength and
learn to speak and walk. Required a wheelchair for several weeks.
- Started speech, occupational, and physical therapy while still in the
- Her total stay in the hospital was 1 month.
- Arrived home on Sept 28th. Required a feeding tube for another two and a
half weeks. The sleep apnea is central and she requires an oxygen
mask every night. She also is connected to a pulse oximeter on her toe.
- Because of her swallowing problems, she requires 2nd stage baby foods and
thickened liquids. This is a result of the ACM. Her next surgery is
scheduled for Jan. 1998. They will remove her adenoids and large
tonsils hoping to give her more room in her throat to swallow.
- The muscles in her tongue and cheeks and neck are very weak. She goes
to therapy to try and strengthen them.
- Alexis attends a Curative Workshop twice a week for speech, physical and
occupational therapy. Doctors recommend extensive therapy after her
operation in Jan. 1998.
If you'd like to send an
e-mail to Alexis or her parents, CLICK HERE. Correspondence is appreciated.
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