CP Awareness Month

As many of you may or may not know, March is CP Awareness month and March 25th is National CP Awareness Day (don't forget to wear your GREEN).  I often get questions asking “What exactly is CP?” & “I have heard of CP but don’t know anything about it” and to be honest with you until about 3 years ago I had no idea what it was either!  Now it is my all-encompassing world, we eat, sleep and breathe CP and are always looking to learn more about this condition and how we can best help Logan live the best life he can with it.  

If you know Logan you know that he is a super happy, friendly, funny, adorable little boy who is really developing into such a cool and interesting little person but as he is getting older I am noticing that the CP is becoming a little more evident to outsiders.  It is not that it is getting worse, as all damage that has been done is done and it is not a progressive condition, however as more and more of his peers are walking, running, jumping, playing the limitations his body has put on him are becoming more visible.  He lives a world of therapies and doctors’ visits, he needs to use a walker and braces to help him get around (for now) and is just unable to keep up with his fellow 3 year olds at this point.  Through it all though he is such a little trooper and has been through more in these short 3 years than most will go through in a lifetime.

With all that said, I think there are a lot of misconceptions about CP and what it actually means so in honor of CP Awareness Month I thought I would try to give you all a little more information about Cerebral Palsy and particularly about Logan’s version of CP, based off of some articles and posts I have seen from other CP Mommy Warriors.

1. Cerebral palsy is a Neurological Disorder.

Cerebral palsy refers to a group of non-progressive disorders affecting movement, balance and posture. The condition stems from deformities in the developing brain or from brain damage sustained before birth, during birth, or within the first three years of life. In cerebral palsy, the signals from the brain to the body are lost or redirected, resulting in the difficulties with movement people with cerebral palsy face.

We aren’t exactly sure what caused Logan’s but we know he had quite a traumatic last couple of week in utero and was not breathing when he was born at 31 weeks.  Somewhere during this time he had a lack of oxygen to his brain that caused portions of the white matter in his brain to die basically leaving “holes” in his brain especially around the areas that control motor functioning.

2. Cerebral palsy is not a rare condition- it effects roughly 3 in every 1000 births.

 Some kids are diagnosed very soon due to obvious symptoms and other are not diagnosed at all, or diagnosed by happenstance later in life because they have little to no symptoms.  We knew about Logan’s white matter injury when he was one month old and knew there was a chance for Cerebral Palsy but wasn’t officially diagnosed until he was about a year old based on some developmental delays we were noticing.

3. There are different types of cerebral palsy.

Cerebral palsy manifests itself in a variety of ways. The three primary types of cerebral palsy are spastic cerebral palsy - characterized by muscle stiffness in at least one limb, athetoid cerebral palsy - characterized by involuntary movement and ataxic cerebral palsy - characterized by difficulty with coordinated movement. However, cerebral palsy can also present itself as a mixture of these types.

Spastic cerebral palsy is further categorized by the limbs affected by cerebral palsy. Spastic cerebral palsy can primarily or exclusively affect the legs - spastic diplegia (this is what Logan has SDCP), one side of the body - spastic hemiplegia or can affect all four limbs - spastic quadriplegia. In rare cases, spastic cerebral palsy can affect one limb - spastic monoplegia or three limbs spastic triplegia.

4. Symptoms of Cerebral Palsy vary from person to person.

Each child is different in how CP affects them. Some may only notice very light tightness or looseness and continue with normal life, while some are so heavily effected that they will never walk, talk, or sometimes never breath on their own. Logan is mainly affected in his lower extremities with a lot of spasticity (tightness) in his legs, his core is weak and his eyes have been affected as well.

5. Symptoms of CP can vary on a daily basis.

Anything from weather, mood, medications, illness, anxiety, schedule change etc can affect the symptoms and severity of symptoms. Logan gets 8 Botox shots in his legs every 3-4 months to help relieve some of the spasticity, or stiffness, in his legs to help him move and learn to walk.  While the Botox is working Logan is able to make great progress in his strength and movement.  Once it starts to wear off however we are able to notice his legs and feet getting tighter making it more difficult for him to move around.

6. Cerebral Palsy is incurable.

As of now, there is no cure. There are great therapies and procedures to help reduce symptoms, and lots of research in stem cells, but hopefully one day there is a cure, a way to regrow the certain parts of the brain that are dead!

7. Cerebral palsy can effect a person physically, cognitively or both.

Depending on the severity and location or the brain injury, CP can leave a person cognitively and physically handicapped, or just physically handicapped. Thus far, it seems that Logan has only been affected physically, as he is super smart and getting chattier every day. The brain controls every aspect of our being, therefor an injury to it can effect anything from muscle movement, memory, eye sight, cognitive ability, etc, and you just don't know its full effect on a person until that symptom shows.

8. Children with cerebral palsy can go on to lead very normal and typical lives.

Of course this isn't true for 100% of kids born with CP, but many children, even ones with some more severe symptoms, can go on to lead very fulfilling lives- get married, have children, go to college, have a wonderful job and be very successful. With all of the available therapies now a days, it makes it even more possible for kids with CP to feel "normal" or "the same" as their peers. Logan wears leg braces to help support him while standing and walking, uses a posterior walker to help him balance when he walks, does lots of stretching to loosen his muscles, sees several doctors (neurologist, orthopedist, Opthalmologist, etc) and does 5 days a week of therapy (including Physical Therapy, Occupational Therapy, Speech Therapy, Aquatherapy & Hippotherapy) to help ensure everything is being done to make sure he leads as normal a life as possible. We are certain that Logan will go on to lead a successful life and are not going to let CP hold him down.

9. You shouldn't feel sorry or be scared of children with cerebral palsy, and neither should your children.

Kids with CP are just like any other kids- the need love, compassion, guidance, discipline, friendships, relationships, etc. They want to play baseball and soccer and ride rides at six flags and swim and swing at the park and feed the ducks and ride bikes, just like every other kid in the world. They want to date, go to dances, be a cheerleader, be valedictorian, get their degree, find love, have children of their own and grow old with the ones they love.

Very rarely does CP affect ones personality, even if one is cognitively effected. A funny child will still be funny whether they're on a stage telling jokes or sitting in a wheel chair. Stares, hurtful words, being left out or being ignored will hurt a child with CP just as much as any typical child.

10. How can you be a great friend to a parent of a child with CP?

*Be patient. Realize that we may run late due to unforeseen circumstances that you may not have to deal with, but are a part of our daily life. Understand that we may be used to moving very slow to accommodate our child that is trying so hard to learn to walk with their Walker and leg braces. We may have to take our 3, 4, or 5+ year old into a public restroom to change their diaper because they can't use or get to the toilet.

*Be courteous. Plan play dates that you know our child with CP can attend. Trampoline parks and skating rinks don't work for us, but parks, movies, shopping, zoo, library and going out to eat are just a few of the many things we can easily do and not feel left out!

*Invite us. Even if the last 19 times we couldn't go, please still invite us, because on that 20th time, we may actually be able to make it and trust me, we REALLY need some time out with friends! Don't take offense if we have to turn down an invite, because trust me, if we are turning it down, it's because we CANT go, not because we don't want to!

Well, there you go…I hope this gives you a little better insight into our daily life and teaches you a little bit more about Logan, as well as all the other kiddos out there with CP!