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This is an update on Morgan Lynnae Jones. We
wrote her story about 3½ years ago. At the time she was only
7-months-old. Now she is almost 4-years-old. Morgan has gone
through a lot of changes in the last 3 years. After a diagnosis
(not finalized until July of 2002) of GA2 in February of 2000, Morgan
had had another brain hemorrhage. In May of 2000, Morgan had what
was called a "washout." This is where they drill holes
in her skull and drain the fluid and blood off of the brain. She
did so well that she got to come home after 2 days. She started
making remarkable progress after that, and after 6 months to
a year, her brain filled up the space inside the skull. No more
hemorrhages!!
Morgan had a lot of help to get where she is today. She saw
5 therapists a week: PT, OT, DI, vision, and speech, and still does
to this day. But, we noticed a problem at 1-year-old. I noticed
she wouldn't respond to her name. The speech therapist told us we
should have another hearing test done. So we did. It showed that
her hearing was on the low-normal range, and they told us to come
back in 6 months for another hearing test. But after a few months,
I noticed her putting toys to her ears to hear them. We immediately
went to Cincinnati Children's Hospital (CHMC) where we had an ABR
test done. It showed that she had a moderate hearing loss in the
left ear and a mild hearing loss in the right. I felt so bad knowing
that all of this time she couldn't hear things we were saying and
that's why her speech was so bad. Morgan was almost 2 before
she got the hearing aids to help her hear. She finally started
to babble with more intent. She could babble using sentence inflection,
but not real words. She mostly used vowels.
At 1-year-old, Morgan wasn't walking yet. She crawled everywhere
and would put some weight down on her legs, but she wouldn't try
to let go of things to walk. Her doctors and therapists attributed
this to her vision, because her leg muscles were strong. Morgan
is legally blind in both eyes and has a cataract over her left eye
that right now is not operable. She couldn't see exactly where she
was going and had a depth perception problem. Two weeks after
her 2nd birthday, Morgan finally walked! We bribed her with
food (she loves to eat). Morgan proved the doctors wrong again.
If they say it can't be done, she does it anyway!
Morgan was doing great! She was learning how to cope with her
vision. No one can tell now that she is legally blind. Her vision
therapist even said, "What do you need me for?" because
she learned to cope all on her own. It wasn't something we taught
her, but we let her explore and find her way. She still has a little
problem with depth perception on curbs and stairs and texture changes
on the floor, but if I know her, she'll get it!
We now had discovered a problem that covered a lot of areas in
her life, sensory integration. First of all, she couldn't be
in large crowds or noisy places. She would scream and kick, and
at first we couldn't figure out why. The therapists said that it
is like us going to a crowded mall at Christmas time, but 10 times
worse for her. So, we have to adjust our schedules around less crowded
times if we go out, or if she gets upset, we have to take her out
of the situation immediately to calm her anxiety. Another problem
was she couldn't feel what are called the "smooth muscles"
very well in her body. The smooth muscles are in the mouth, stomach
and bladder. We noticed she would stuff her mouth with food and
then eat, and eat and eat. They said she does this because she can't
feel things very well and doesn't know when to stop. We have tried
to help this by using spicier foods. She also isn't potty trained
yet at 3 ½, because she can't feel that she needs to go to
the bathroom. I'm sure it will come in time. The sensory integration
also has to do with her body in space. She doesn't like to be in
a wagon, on a bike or on a swing, because she can't figure out where
her body is in that space. We have worked on this by just putting
her on these things, and letting her be the judge of what she wants
to do.
At almost the age of 3, we discovered another problem. When
we would go outside in 70, 80 and 90-degree weather, Morgan's whole
body would turn really red. She would get a little puffy, too. When
we would bring her in the air conditioning, she would start to sweat.
Then, it would take her hours to turn back to a normal color. After
speaking with her neurologist, he believes that the hypothalamus
may have been damaged during her brain hemorrhages earlier in her
life. The hypothalamus controls the temperature in your body.
He thinks that Morgan's can't control the heat in her body and make
it sweat properly, and this can cause a heat stoke. So as a result,
Morgan can't be out in the summer heat above 75 to 80 (depending
on other conditions).
Other than that, she had a great year. She wasn't
sick or in the hospital for a whole year! But then around Christmas
of 2002, Morgan started having 20-second seizures. We weren't
sure why because she had been seizure free for 3 years. Then, we
noticed Morgan, who was normally bouncing around the house, was
lethargic and didn't want to do anything. We made an appointment
to see her neurologist, and he put her back on her seizure medication
that she had been off of for 2 years. The seizures increased from
one a day to 4 or 5 a day. And then, on December 28, she was in
the bathtub, and started staring. She wouldn't come out of it. We
called 911 for an ambulance, and then she started jerking her arm
and head. We realized she was having a seizure. The rescue team
gave her oxygen, but wasn't allowed to do anything else to stop
the seizure. She ended up seizing for 45 minutes. From the hospital,
they flew her to the hospital in Cincinnati, where they couldn't
determine what was wrong. They put her on more medication and sent
us home. The medication made Morgan have erratic and irrational
behavior. But after a tumultuous 2 months, the medication stopped
the seizures completely, and she returned to her normal playful
self.
Again things are great! She is going to preschool
two half-days a week to get all of her therapy, and she loves it.
Her behavior is great (for a three-year-old). She is still slow
on her speech, though. Her doctor said the other day that he was
really worried that her speech wouldn't come, but she has proved
him wrong before! I'm sure she will do it again!!
We thank God for her. She is our little miracle
child who has the determination to overcome any obstacle.
April and Chad Jones
Grayson, KY
ajones@carter.k12.ky.us
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