Cerebral Palsy

Wednesday, October 2, 2013

Disclaimer:  I talk a lot about my faith and belief, especially in regards to God saving our daughter.  I share this post in hopes to educate and create a better understanding of Cerebral Palsy and how it effects our girl.  We believe fully in a God that heals.  You don't have to say it, sell me on the idea, or convince me otherwise.  We already know.  We've personally seen it.  Much love!   

Did you know, there are 17 million people WORLDWIDE with Cerebral Palsy?

And our girl, Alli, is one of them. 



Cerebral Palsy: (following info taken from PubMed Health) 

Cerebral palsy is a group of disorders that involve brain and nervous system functions, such as movement, learning, hearing, seeing, and thinking.

There are several different types of cerebral palsy, including spastic, dyskinetic, ataxic, hypotonic, and mixed.

It is caused by injuries or abnormalities of the brain. Damage can occur as the baby grows in the womb, during or after birth, or any time during the first 2 years of life, while the baby's brain is still developing.

In some people with cerebral palsy, parts of the brain are injured due to low levels of oxygen (hypoxia) in the area. This is thought to be the cause of Alli's damage. 

Premature infants have a higher risk of developing cerebral palsy. In fact, Preemies, especially micro-preemies, are at a 100% greater risk of having CP than a Full Term Baby. 

Cerebral Palsy is very misunderstood.  I'll be the first to admit, I fell pray to the stereotype.  But CP can be very mild, almost undetectable to the eye.  Or, it can be very severe.  It could require round the clock care or a person with CP could carry on a normal life with no limits. 

When I found out it was World Cerebral Palsy Day I knew I had to blog.  I don't jump on the bandwagon for every and all causes, but I will for two. 

Prematurity Awareness

and

Cerebral Palsy

Mostly because both have greatly impacted and forever changed our family.......

But also because both are VERY misunderstood. 


My hope is that her ginormous smile and larger than life giggle redefine what CP looks like to you.  

She has totally redefined our view.   

While not totally caught off guard, the words Spastic diplegia Cerebral Palsy hurt. 

Ok.....in all seriousness.....

Cut like a knife. 

You can read THE diagnosis here.

For us, we don't see Alli as different.  We see her as doing things different.  And at a different time. 

She was just discovering her hands when other babies her age were learning to walk.  She is just learning to stack blocks while other toddlers her age are potty training.  She doesn't know her body parts, her colors, nor can she sing her ABC's like a typical almost 3 year old.  Moreover, she doesn't really say anything other than sounds.  Coming to terms has been heartbreaking.  There has been anguish, but there has also been joy.  We've heard a million times that she will never eat, walk, or talk.  But we've also heard she wouldn't make it through the pregnancy, through day #1, day #3, day #9, day #22, day #59, day #152-#155.  If we would have bought into all the things they say we'd all be gone by now.     

Statistics can and are wrong.  That's why they are statistics.     

At the end of the day, we're a Mom and Dad who would do anything not to have our daughter labeled. 

And do anything for her to be a typically developing child. 

So as much as we do believe in a God who heals (I mean for real, look where we have been) it is still tough to hear these things about your very own child.  And ultimately not a single person can tell us what Alli's life will be life in 5-10-15 years.  Not a single case of CP is the same.  I've seen kiddos with worse damage than Alli walking, talking, eating, thriving. 

There is not a single bit of consistency in outcomes. 

So we can sulk or we can fight

It has taken awhile to get there and as we travel these murky waters there are moments when John and I still need time to process this season and that our lives are forever changed and most importantly that our daughter's life is forever changed.    

Cerebral Palsy looks different on everyone so I thought I would share how it looks on Alli. 

Below you will find an absolutely wonderful description of Cerebral Palsy found from World Cerebral Palsy Day.  It's such a great tool to see the variances in the diagnosis. 

It was originally thought that Alli had Spastic diplegia Cerebral Palsy, but we now have 3 varying opinions. 

If there is anything I have learned, it is that there is NOTHING consistent in the world of Neurology. 

Alli's injury greatly limits the use of her hands and feet.  She's extremely tight or spastic in those areas, but her legs and hands have minimal tone issues (this is where there is varying opinions on her "type").  You will hear "tone" a lot in the CP community.  Alli's tone has varied greatly from one end to the other in her little life. 

Because gross motor function is probably the most obvious view of CP, I'll begin with the Gross Motor Function Classification System.  Alli is classified as a Level IV, meaning she has the ability to walk with assistance like a walker, but requires a stroller (and soon will be getting a wheelchair) for her major mode of transportation.  But we believe, with continued healing, rewiring, and intense therapy she will be a Level II, which was also indicated on the recent GMFCS "test" administered on her.  

Other associated impairments of Cerebral Palsy:

1 in 3 children are unable to walk: Suspected, but not definite (we wholeheartedly believe she will....Amen??!!)

1 in 4 children are unable to talk:  Alli does fall in this category and not much knowledge is known to why and what her future looks like here.

3 in 4 experience pain:  Not to our knowledge...in fact, her pain tolerance is extremely high

1 in 4 has epilepsy:  Another controversial topic with varying opinions from Neurologists.  We're awaiting a visit with Neurology in St. Louis to bridge the divide in diagnoses.

1 in 2 has intellectual impairment:  Alli is severely delayed in cognition, gross motor, fine motor & speech

1 in 10 has severe vision impairment:  100% perfect vision...Amen!

1 in 4 has bladder control problems:  We'll omit this one until she's at least 5

1 in 5 has a sleep disorder:  Sleeps like a rock....Amen!

1 in 5 has saliva control problems:  This is part of the stereotypical site of CP to me and sadly, Alli suffers greatly from saliva control.  She has almost 0% ability to swallow...hence why she also has issues eating. 

Cerebral Palsy is not something that I did wrong or that doctors did wrong.  It happened. 

Now we deal with it. 

And pray that little by little, the view of Cerebral Palsy is different.  The view of all disabilities is different.

Is changed. 

   

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