Monday, March 30, 2009


Today is the last day of CEREBRAL PALSY AWARENESS MONTH.

I wish I had all the answers to the many questions about cerebral palsy. I still have SO much to learn. Not only about CP but what I can do (or have Cole do) to improve his quality of life.

We have an appointment on May 4th for botox to be injected into Cole's hands and arms. I have been spending whatever time I can trying to research everything I possibly can about this and how it works with CP.

When we first scheduled this I had done 'some' research. I had talked to several friends that have children with CP and have tried it. Only one informed me it didn't not have an affect one way or the other, the others have only given praises stating how it has improved their child's mobility.

I felt pretty confident that this was truly the right choice for Cole. I was a little nervous about him being under anesthesia. This was more because of the bad memories/stress that I felt seeing him hooked up to machines and being monitored in the NICU than because of the botox itself. I also realize there is some danger with anyone going under anesthesia (otherwise why would they ALWAYS make you sign the release papers).

Well, this all changed when I bumped into a very sweet dear friend. I truly value her opinion and I know she would never give me ill advise. Her grand baby twin girls were in the NICU with Cole and we knew her son (the twins dad) BC (before children).

When I explained that we would be going in for botox she was very concerned and said she would NEVER let either of the girls receive botox. She explained a situation that had awful results from botox and all the research this affected person had done. She simply told me what she knew and begged me to please do my research. I know it was not her intent, but now....


It is a LOT of responsibility weighing on my shoulders right now. I have to determine if the good out weighs the evil. Do I pull back and NOT get him the botox because I am afraid? Afraid that this could paralyze him forever or that he will be in pain with no way to let me know? Would this take away his opportunity to be able to use his hands and arms?

Or, do I take the risk so that maybe he can push up and start to crawl? Would this be just what we need to loosen his tight spastic muscles so he can learn to feed himself or hold a toy and actually be able to bring it to his mouth? If we can accomplish this then maybe he could introduce new textures to his mouth (by putting all the things we think he shouldn't into his mouth)so we can give him solid instead of pureed food.

I have spoken to two neurologist (both from a very well known and well praised center and I have only heard good things about these doctors), Cole's pediatrician, five of his therapists, a LOT of my friends, the internet and God!

I don't know how to weed out my feelings to determine if it's God, my mother's intuition, or just me wanting to take advantage of every opportunity for even the slightest chance for improvement for my baby. My thoughts and concerns are completely jumbled.

I would love and appreciate if anyone reading this has an opinion, facts, or even a personal story (results from botox) to tell regarding botox injections for cerebral palsy, whether it is good or bad.

The way the botox works for cerebral palsy is it partially paralyzes the stronger muscles giving children an opportunity to stretch and strengthen the weak muscles. Injections and physical therapy will help the child achieve better muscle strength and balance.

Cole's therapists have said by loosening the tight (spastic) muscles they can be more productive in what they are trying to teach him and it will help him gain confidence (therefore making him a happy baby with less frustrations). This will also hopefully help him want to try harder since he will be seeing results.

Not every child will benefit from botox injections and only a set amount, depending on the child's body size can be given. This is why we will only be injecting (if we do) his hands and arms. They are the most spastic and although he does have tight hamstrings, he still has a beautiful step and he loves to walk in his KidWalk.

So, please, leave your comments. Give me any information YOU may have. Tell me what you would do if it were your baby. And feel free to leave me a link to your story or someone's that you may know.

see Seven Clown Circus

Friday, March 20, 2009

CP Awareness Day!

Today is National Cerebral Palsy Awareness Day!

- There is currently no cure for cerebral palsy and in most cases, it is not preventable. In over 50 years, treatments for CP have not progressed much at all. In fact, today, there remains little consensus among medical professionals regarding what causes CP or how best to treat it. Why do 800,000 or more Americans have CP, and yet we don’t know much more about what causes it or how to prevent it than we did a half century ago?

There are several different 'types' of Cerebral Palsy. The classification depends on the severity of her limitations, as well as what parts of the body and brain are affected.

These are the different types according to 4MyChild :
Spastic Cerebral Palsy

Spastic Cerebral Palsy is the most common diagnosis. If your child’s CP is “spastic,” her muscles are rigid and jerky, and she has difficulty getting around. There are three types of spastic Cerebral Palsy:

  • Spastic diplegia — Your child’s leg and hip muscles are tight, and his legs cross at the knees, making it difficult to walk. This kind of movement is frequently referred to as “scissoring.”
  • Spastic hemiplegia — Only one side of your child’s body is stiff. Her arms or hands might be more affected than her legs. On the affected side, her arm and leg may not develop normally. She may also require leg braces.
  • Spastic quadriplegia — The severest of the three, spastic quadriplegia means that your child is more likely to have mental retardation if diagnosed as quadriplegia. His legs, arms, and body are affected. It will be difficult for him to walk and talk, and he may also experience seizures.

Athetoid Dyskinetic Cerebral Palsy

Athetoid dyskinetic is the second most frequently diagnosed type of Cerebral Palsy. Your child will have normal intelligence, but her body will be totally affected by muscle problems. Her muscle tone can be weak or tight, and she might have trouble walking, sitting, or speaking clearly. She may also have trouble controlling her facial muscles and therefore drool.

Ataxic Cerebral Palsy

This is the least diagnosed type of Cerebral Palsy. Your child will have trouble tying his shoes, buttoning his shirt, cutting with scissors, and doing other tasks that require fine motor skills. He might walk with his feet farther apart than normal and have trouble with his balance and coordination. Your child may also suffer from “intention tremors,” a shaking that begins with a voluntary movement. For example, your child may reach for a toy, and then his hand and arm will start to shake. As he gets closer to the toy, the tremor worsens.

Hypotonic Cerebral Palsy

Unlike with other types of CP, you will notice that your baby has muscle control problems early in life. Her head seems floppy, and she will not be able to control it when sitting up. Her motor skills will be developmentally delayed.

It is suspected that this type of Cerebral Palsy is caused by brain damage or malformations that occur while a baby’s brain is still developing.

Mixed Cerebral Palsy

If your child does not “fit” into one of the above diagnoses, your doctor will consider him “mixed.” This is quite common.

Congenital Cerebral Palsy

If your child is diagnosed with congenital Cerebral Palsy, be aware that this is not a “type” of palsy, but rather it is a term meaning “birth defect.” In other words, your child’s doctor is saying that he developed Cerebral Palsy during development. It is not a condition that your child inherited from you or your husband or partner. And it is not caused by a medical error.

Erb’s Palsy

If any type of Cerebral Palsy can be attributed to a birthing accident, it is Erb’s palsy (brachial plexus palsy). According to the National Institute of Neurological Disorders and Stroke:

Although injuries can occur at any time, many brachial plexus injuries happen when a baby’s shoulders become impacted during delivery and the brachial plexus nerves stretch or tear.

If your baby has Erb’s palsy, he will have no muscle control in his arm; the arm will be limp and have no feeling.

Based on the nerve area that is affected, there are four types of Erb’s Palsy:

  • Avulsion — the nerve completely separates from the spine.
  • Rupture — the nerve is torn throughout but not from the spine.
  • Praxis/stretch — the nerve is damaged but not torn and could heal on its own.
  • Neuroma — scar tissue from an injury puts pressure on the nerve.
Cole was diagnosed as having spastic quadriplegia cerebral palsy. As stated above it is hard to definitely categorize each indiviual because each one is so different. Cole has low muscle tone in the trunk, neck and mouth. His arms and hands are spastic when he tries to use them but can also be loose at times. He has tight hamstrings but a beautiful step.

Regardless of what 'type' of CP Cole has the treatment/therapy we provide for him is the same. Cole receives therapy every single day. He has two days of physical therapy, occupational therapy, speech therapy, swallow therapy and swim therapy. We will be trying to add hippotherapy this coming August.

We are very fortunate that Cole does not have to have a feeding tube (even though he can not eat solid table food, we can puree it for him) and we are thankful he does not have seizures. Both of these could complicate things even further for him.

If you want to learn more about Cerebral Palsy please visit Life of Logan where my friend Keri (his mother) is hosting a contest.

You could also show your support by spreading the awareness of cerebral palsy by adding this button to your blog...or one of the others over at Life of Logan.


Friday, March 13, 2009

What's Your IQ?

Many people have asked about the intellectual ability of a person with Cerebral Palsy.

My answer is that I honestly do not know.

What I DO know is that with Cole there are obvious signs that he KNOWS what is going on around him. He attempts to communicate and, at times, he does it very well. If he does not like something he let's us know. When he is happy or likes something, he also let's us know. As I've stated in previous posts he is not verbal as far as speaking words and we are teaching him ASL (American Sign Language) by using Signing Time DVD's. He IS learning what we teach him.

Here is the information that I (and my friend Keri over at Life of Logan) have found and discussed, which was found in Wikipedia.

The full intellectual potential of a child born with CP will often not be known until the child starts school. People with CP are more likely to have some type of learning disability, but this is not related to a person's intellect or IQ level. Intellectual level among people with CP varies from genius to mentally retarded, as it does in the general population, and experts have stated that it is important to not underestimate CP sufferer's capabilities and to give them every opportunity to learn.

Spastic Cerebral Palsy, the most common form of CP, causes the muscles to be tense, rigid and movements are slow and difficult. This can be misinterpreted as cognitive delay due to difficulty of communication. Individuals with cerebral palsy can have learning difficulties, but sometimes it is the sheer magnitude of problems caused by the underlying brain injury that prevents the individual from expressing what cognitive abilities they do possess.

Therefore, I can not even begin to measure the knowledge that my child contains inside that complicated, beautiful head of his. But, I do know that he tries and comprehends what we say to him. I am quite sure he gets very frustrated 'trying' to express what he knows but his body not cooperating.

Don't forget - March is National CP Awareness Month!
Please help spread the awareness!

Sunday, March 8, 2009

The Face of CP

THEN:in the NICU,no clue of even the possibility of CP

NOW: dealing with the effects of CP

March is National CP Awareness Month!

Our baby recently turned two years old but at times, other than his size, it feels like he is barely one. Intellectually I know he is two and should be way ahead in his milestones. At times, it is very easy to forget as I still have to 'do' for him like I did my other two boys at about 8 months of age.

When Cole was 9 months old I was told he had Cerebral Palsy! I had absolutely NO idea what this meant, how it would affect him or how it would affect us as a family.

This is the month to spread the awareness of Cerebral Palsy.

~CP, the most common cause of motor disability in childhood, is a group of disorders that affects a person’s ability to move and keep his or her balance and posture.

~Cerebral means having to do with the brain. Palsy means weakness or problems with using the muscles.

~The symptoms of CP vary from person to person. A child may simply be a little clumsy or awkward or unable to walk at all.

~CP is caused by damage to or abnormal development of one or more parts of the brain that control movement. The damage or abnormality happens during pregnancy, near the time of delivery or early in life.

~The part of the brain that is damaged determines what parts of the body are affected.

~CP itself is not progressive—the brain damage or abnormality does not get worse as the child gets older; however, the physical characteristics can change over a person’s lifetime.

~Depending on which areas of the brain are affected, one or more of the following may occur: muscle tightness; involuntary movement; difficulty in walking; difficulty in swallowing; and problems with speech.

**This information was found at Reaching for the Stars. Please help spread the awareness of CEREBRAL PALSY.