Welcome to our new blog! We've decided to start this as a place to share updates about our little dude. He's growing up fast! We get questions about him constantly--from friends, family, and...everyone. So hopefully this will be a good way for us to share some of what's going on in his world. Big bro and big sis will make appearances on here periodically, too, I'm sure--but the emphasis will be Curtis.
Here is some background info about
Curtis--how we first discovered something was wrong, the tests that were done, our initial
reactions, and what we did after his diagnosis...
(warning,
it's a bit long)
On June 20, 2008, Curtis Loyd, our
third child, was born. He was a healthy 7 pounds, 7 ounces, born at 38 weeks and
2 days gestation via a planned repeat c-section. His delivery was
uncomplicated. He was a calm little love bug compared to his crazy, energetic older siblings.
(Baby Curtis with big sis and big bro--age 2 and 4, respectively)
At 6 months old, right around
Christmas of 2008, I started to notice that something was "off" with Curtis. He was
reaching for toys by then, but he would never reach with his left hand. In
fact, when he'd reach with his right hand, his left hand would be balled up
into a fist and held close to his body. He also seemed a bit "floppy"...he
wasn't yet sitting on his own and didn't seem like he was close to reaching
this milestone. Friends and family members tried to tell me that all of this
was normal, that he was OK, but my instincts told me that something was wrong.
(Christmas 2008--Curtis was 6 months old. Notice the clenched left fist)
I made an appointment with our
pediatrician's office at the end of January 2009. A quick exam by the doctor confirmed my
suspicion. Something was definitely not right and she gave me a referral to the
pediatric neurologist. I left the office in shock. I went to the
parking lot and called Jon, crying, completely
freaking out. I was scared. I knew something was wrong, but to hear it
confirmed by a doctor made me terrified. What was wrong with him?
I went home and called the pediatric
neurology department at Phoenix Children's Hospital (at the time, we were
living in a small town about an hour and a half away from Phoenix, AZ).
A few weeks later, in February 2009, we made the trip down to Phoenix to see the neurologist. I had no idea
what to expect, but I was hoping she'd give us some sort of good news. Or at least that it wouldn't be bad news. I was hoping it would be something that
could be fixed. Or maybe something that would go
away with time. Or...I don't know. She looked him over and
pointed out all the things that we already knew. He had low muscle tone--he was
about 8 months old now and still wasn't sitting up on his own. He also wasn't
reaching with his left hand and his left hand/arm was still clenching close to his
body when he reached with his right hand. When we placed him on his belly, he couldn't push up to straight
arms--he always did an army crawl position (with his forearms on the ground
instead of his hands). Her initial guess was that he had a stroke in utero. I
couldn't believe it. Yes, I had heard of this happening, but it didn't ever cross my mind as something that would happen to my baby. She told us that we needed to start physical therapy with Curtis immediately--that, regardless of the diagnosis, he would need therapy. She also ordered an MRI to be done on Curtis
as soon possible. Unfortunately, "as soon as possible" at a busy
children's hospital is more like "in several weeks". So, we had to
wait. (note: a lot of this story involves waiting)
On 3/12/09, Curtis finally went in
for his MRI. We drove down to Phoenix
early in the morning, sick with nerves. I'll never forget waiting in the little
room and having the nurse explain how they'd come back and get him and what
they'd do to sedate him, how long the MRI would take, and what would happen
when they'd come and get us when the MRI was complete. I remember the feeling
of handing him over when they came to get him--like I wanted to run in the
other direction. Like I wanted to scream, "Eff this! I don't care if
there's something wrong with him! He's fine! He's perfect!" But, of course
I didn't do that. I handed him over and I turned to Jon and cried. It was the
worst feeling. They took him, my baby, and off we went to the main waiting room
where we sat and...we waited. I stared at the door, waiting for them to call
our name to tell us it was over and that we could go see him. I swear that hour
seemed to take forever. I spent the entire time going back and forth between
staring at the clock and the door. Then they finally called us. As we walked
down the hall, I recognized his cry instantly. I went back and held him and felt
so sad...he looked at me with blurry, tired, foggy anesthesia eyes. I felt so
bad for him. I knew he wasn't in pain, but he must have been so confused. They
let me rock him and nurse him. It took him a good 5 minutes before he finally
calmed down enough to relax in my arms. But then it was done. It was over. He
did fine.
(post-MRI anesthesia eyes)
Now all we had to do was wait for the results.
More waiting...
And when I say waiting, I mean
waiting. We waited over a week before
I finally called the doctor's office to see if the radiology report came in.
The doctor said she had the results but wanted to wait for our appointment to
tell us the information. Our appointment wasn't for another 3 weeks! There was
no
way I was going to wait that long, I just wanted answers! I had been agonizing
over this for months now. I finally convinced her to tell me over the phone. I
was in tears at this point. And so came the news...Curtis was born with a brain malformation. It's called
cortical dysplasia. At least that was the main finding on the MRI. She said that
there were other little things that the radiologist wrote in the report,
but she believes they are all secondary to the cortical dysplasia. She
didn't get into treatment options or a prognosis with me, really. She
asked if he had started his physical therapy and I said yes. She was
happy to hear that he was doing well in therapy and made a point to tell
me that "babies amaze us every day with what they can do". She did say
that we should expect Curtis to be in some form of therapy for a long
time, if not forever. That was the only info she gave me at the time. Of course, I spent a few minutes looking up some info on
cortical dysplasia online...but I quickly stopped because I feel like
the internet often gives a "worst case scenario". Here was the simple definition of cortical dysplasia that I found:
Cortical dysplasia
is a congenital abnormality where the neurons in an area of the brain
failed to migrate in the proper formation in utero. Occasionally neurons
will develop that are larger than normal in certain areas. This causes
the signals sent through the neurons in these areas to misfire, which
sends an incorrect signal. It is commonly associated with seizures
and may be associated with some level of developmental delay(s).
Instead of using medication to suppress the seizures, surgery is
increasingly becoming a popular solution for the problem.
I was heartbroken. And scared. This was my baby. I cried...a lot. And I holed myself up in my house and
felt sorry for myself and for my child. And wondered why all of this was
happening to us. And wondered what it all meant and what the future was going
to look like for my sweet boy.
The 3 weeks passed, and we finally went
down to meet with the neurologist again. She showed us the MRI images and gave
us an in-depth explanation of Curtis' brain. His brain, basically, does not look
pretty. There is a lot going on--mostly on the right side of his brain (which is why the left side of his body is affected). One of his ventricles is grossly enlarged. He has
polymicrogyria,
which basically means that there are a lot of little grooves on the
outer surface of his brain that shouldn't be there. He has some clefts
in the brain that shouldn't be there. To put it in simple terms, he has a
few things that are larger than they should be and a few things that
are smaller than they should be and some things that shouldn't be there
at all. Everything happened in utero during the development of his
brain. I immediately asked if it was something I had done and she reassured me
that it was not. This was most likely a freak genetic 'mishap', she said. Still,
as his mother, I feel like I will always hold some guilt for
this.
So what did all of this mean?
She
told us that a lot of things were going to be, basically, question marks. That we
wouldn't know what was going to happen until it happened or didn't happen.
Clearly he was going to have motor problems--he already had them. It was
possible he would have learning disabilities and a speech delay, as well. The
main plan of action was to start physical, occupational, and speech therapy as
soon as possible. The main concern, however, was seizures. She said the fact
that he hadn't had a seizure yet was a good sign. Most babies are diagnosed
with cortical dysplasia shortly after birth due to seizures. We obviously had
to be on high alert for any sort of seizure activity. We also had to have
frequent recall visits with the neurologist.
So where did we go from
there?
Curtis began weekly speech,
occupational, and physical therapy sessions immediately after his diagnosis. We
were lucky that he was diagnosed at a young age and he was able to get early
intervention.
In August 2010, when Curtis was 2, we
made the decision to move from small town AZ back to San Diego. A big reason for the move was because of Curtis. I was terrified that he was going to have a seizure and we'd be so far away from a children's hospital. I also knew that if we wanted the best in terms of therapy for him, we would
need to be in a bigger city. Phoenix Children's Hospital was a good hospital, but it was 1.5 hours away from us and we had no interest in moving to Phoenix! So back to San Diego it was. The
process of getting all new providers for speech, OT, PT, and a new neurologist,
however, was a lot of work. It took months and months, was very
stressful (paperwork, meetings, evaluations, you name it)...but, of course,
Curtis is worth it. Luckily, we have found some of the BEST therapists here and
Curtis made HUGE improvements once he was set up with these amazing therapists.
For example, he was only saying a few words when we left AZ (well below average
for a 'normal' boy of 2+ years old). His new speech therapist suggested right
away that he needed more than just one session of speech per week. Together, she and I
busted our butts and advocated to get him approved for extra speech
therapy...and we got it! We saw a change in him almost immediately. Now, at age
4, we can barely get the kid to stop talking. And to think that at one point
his speech therapist in AZ told me that he might never speak! His OTs and PTs have also been just amazing. I really couldn't have asked for better therapists. If you need a therapist in San Diego--contact me! I can give you some names :)
In winter 2010, Curtis started up
with his new neurologists down at Rady Children's in San Diego. I think it was after meeting with
them that I first read (maybe in the discharge notes?) the words
hemiplegic
cerebral palsy.
I remember thinking to myself, "He doesn't have cerebral palsy.
What are they talking about?" Long story short--I did some research,
chatted with a few of his therapists, and discovered that, yes, he does have cerebral palsy.
I always pictured a CP kid as being in a wheelchair and severely disabled. Clearly,
this is not the case. My kid has CP! (Quick definition courtesy of wikipedia:
Cerebral
palsy (CP) is a group of non-progressive, non-contagious motor conditions that
cause physical disability in human development, chiefly in the various areas of
body movement.) Hemiplegia means 'one side' and for Curtis, it's his left
side.
Curtis has left hemiplegic cerebral palsy. So there's that info for you.
Anyhow, the new neurologists
scheduled him for his first ever
EEG to check for
seizure activity. At the time, he still wasn't speaking as much as a kid his
age should, and they were concerned that his speech delay was due to seizure
activity while he was sleeping. So he had his EEG, which was easy and
quick and nothing like the MRI (thank goodness). The EEG didn't show any seizure activity, but it did show some 'abnormal excitement' in
the brain, which was enough for them to want to put him on some
anti-seizure medication. It was only two pills a day and they thought it would
help settle that excitement and perhaps help with speech. His speech actually
did improve quickly after he started the meds, but no one is certain if it's
coincidence or not. He was only on the meds for about a year before they weaned
him off because they decided that everything else about him was so 'normal'
that they'd rather 'treat the child and not the diagnosis' (cool, right?) He's
been completely fine off the meds. In fact, as of his last recall visit late
last year (2012), he's been completely released from his neurologist's care
(unless there's an emergency or something bad happens--fingers crossed) because they say he is
looking
totally 100% amazing. I can't even tell you how shocked and blown away I was by that news. Never would I have thought that I would hear one of his doctors say that to us.
So, as you can see, we've come a long way. And it's
been a long, long road. Curtis has worked very hard. There have been a lot of
tears from this kid, I won't lie. Curtis is now 4 years old (he'll be 5 in
June). He's had physical therapy, occupational therapy, and speech therapy several
times a week since his diagnosis when he was just a baby. That's a lot of work for one little boy. He's a big boy now, but he still needs a lot of
assistance with many things--getting dressed and undressed,
going to the bathroom, using play structures at the park and school, taking the lid off a marker, holding paper down to color, opening a book to read, etc. Given the chance,
he will use his right
hand exclusively for just about any task. We spend a lot of time trying
to get that left hand (
“lefty”) to help out!
But
he can walk, talk, jump, run, ride a tricycle, walk
up and down stairs (with a handrail present), go down a slide (a big deal because he was terrified of slides for a very long time!), feed himself, drink from an open cup, and do many other things that a "normal" little boy
his age can do. He goes to a mainstream preschool where he is taken out of class a few times during the day to see his therapists. He no longer needs to wear any
braces on his feet/legs or hands/arms, but he may need to at some point in the future, especially if he chooses to participate in sports.
Huge milestone--first day of preschool!
He's a tenacious little guy, to say the least. One day the list of things he can do will be much longer than the list of things he cannot. Of that we are certain!!
Thanks for visiting!
