Putting it in black and white
seems like it makes it real and true like maybe if I don’t write it out, maybe
if I don’t tell anyone, or don’t say it out loud it’s not real, it’s not
happening. Maybe I can rewind and start
over and change things, although I don’t even know what I’d change since I wouldn't
trade this child for anything in the world, and nothing I did or didn't do
caused it or could have prevented it.
I took Olivia to St. Louis on
July 18th, for her appointment at Shriner’s Hospital. We saw several people, had an x-ray, saw a
surgeon, occupational therapist, physical therapist… They did all sorts of strength testing, and
stretching and watched how this muscle responded and that muscle reacted. They asked about other things that she did
and didn't do. Things that I didn't even
consider were suddenly starting to become a part of the list of symptoms. The femoral anteversion, the in-toeing, not
being able to put on her own shoes/socks, or put shirts on or off over her
head, not being able to carry things and walk or go up a couple of steps, or
sit on the floor or a step and stand up, not being able to sit up from lying
position... I had witnessed all of those things at home over the course of the
last few weeks… then yesterday in the testing they had her hold her hands
straight up above her head, she couldn't.
Her elbows bowed out, and they slowly dropped within a few seconds. She couldn't hold them out straight in front
of her at all, her elbows stayed bent (bowed), and her arms dropped. She did a
little better with holding them out to the sides.
The more they did, the more the
Orthopedic surgeon scratched his head… but he knew… he talked to the others
because he knew we weren't looking at something orthopedic. The orthopedic stuff is a symptom… not the
diagnosis. I cried every time something
different fit together… every time he looked at me with his “I’m sorry this is
happening” look. I think he even wished
that it could have been something he could have fixed.
In the course of all of this he
said a few things that it could be… one thing kept coming back. They all concurred, and it was decided that
she needs a Neurology appointment.
The first and third Friday are
the only time they have Neurologists there.
They bumped some other people to get us an appointment on August
1st. There did happen to be an intern
there who works with kids with the condition that they have in mind and he was
called and asked if he could take a look at her. Of course I said yes, maybe he’d see
something they missed and they’d realize they weren't looking in the right
direction.
When he was done, and I asked, he
agreed… they’re on the right track…
They drew 6 vials of blood to do all of the blood work between now and
then so that the doctors will already have those answers before we are there for
the appointment.
Anybody have any guesses??
I never thought in a million
years that I’d hear these words… Muscular Dystrophy. I am still having a tough time wrapping my
head around it. I go from needing to
read everything I can to understand, to thinking about what I need to do to make
things easier for her here, to the adaptations that we’ll have to make to
accommodate her “new” weaknesses now that we know it’s not temporary and can’t
be fixed by surgery like we were hoping.
There are practical things like getting rid of the bunk beds and getting
new beds for the girls… that’s something that I will do no matter what we find
out on the 1st.
But there are things that we need
to just wait and see if this is really what we’re dealing with, an official
diagnosis… They gave me some exercises to do with her to help strengthen her
“core” or at least keep it where it is now…
From what I have read (on the MDA
website so I know it’s reputable), I’m thinking we’re looking at “limb-girdle
muscular dystrophy” (LGMD). Here is
what the MDA site says for signs and symptoms:
“Often, people with LGMD first
notice a problem when they begin to walk with a “waddling” gait because of
weakness of the hip and leg muscles. They may have trouble getting out of
chairs, rising from a toilet seat or climbing stairs.
Weakness in the shoulder area may
make reaching over the head, holding the arms outstretched or carrying heavy
objects difficult. It may become increasingly hard to keep the arms above the
head for such activities as combing your hair or arranging things on a high
shelf. Some people find it harder to type on a computer or other keyboard and
may even have trouble feeding themselves.
Assistive devices, such as a cane
or a long-handled reacher, can make things easier as weakness progresses.
A power wheelchair or scooter
becomes convenient when weakness in the pelvic girdle and upper legs causes
frequent falls. People whose LGMD has reached this stage often find that a
great deal of their independence returns, and they’re much less fatigued, when
they begin using this type of vehicle.
The heart can be affected in
LGMD, but this doesn't occur as often as it does in some other forms of
muscular dystrophy. Heart problems can take two forms — weakness of the heart
muscle (cardiomyopathy) and abnormal transmission of signals that regulate the
heartbeat (conduction abnormalities or arrhythmias). The heart should be
monitored for these complications. When necessary, medications or devices (such
as pacemakers) can be used to treat them.
Respiratory (breathing) function
can decline over time, and this, too, should be monitored regularly. There are
devices that can help sustain respiratory function.
LGMD, like other muscular
dystrophies, is primarily a disorder of voluntary muscles. These are the
muscles you use to move the limbs, neck, trunk and other parts of the body that
are under voluntary control.
The involuntary muscles, except
for the heart (which is a special type of involuntary muscle), aren't affected
in LGMD. Digestion, bowel and bladder functions and sexual function, which are
carried out by involuntary muscles, remain normal.
Pain isn't a major part of LGMD,
although limited mobility sometimes leads to muscle soreness and aching joints.
Exercises to keep joints limber,
moving around as much as possible, warm baths and, if needed, medication can
keep this kind of discomfort to a minimum.
The brain, the intellect and the
senses are unaffected in LGMD. People with LGMD can think, see, hear and feel
sensations as well as those without muscular dystrophy.”
When we got home, I got her a shower chair. It seems like something small, but to me it was a huge step. A step that said that my baby needed help with even the "easy" stuff. She cried when she had to take a shower because standing up for that long hurt her legs. Now she didn't have to stand.
It took me all weekend to accept what they had said. I looked online, I read what I could. I wanted to know that this was something that we could handle. I cried. A lot.
Our house is too small. It's not accessible. There's only one bathroom. It's not accessible. We need a ramp for the back steps. It's so hard for her to go up and down the steps.
On Monday, I went to see Dr. Mike. I wanted to tell him what they had told me. I spoke to his nurse Kelly. She cried when I cried. I know they weren't expecting it either. She promised to fill in Dr. Mike. I also told her I wasn't happy about the Ortho dropping the ball on the referral. She said she would take care of that too.
A couple of days later I got a really sweet note in the mail from Kelly and Dr. Mike. It'll go into Olivia's scrapbook.
