Wednesday, October 7, 2015

World Cerebral Palsy Day 2015

 It has been about a month and a half since we saw the neurologist and received the CP diagnosis.  So this is my first "official" World CP Day as a CP mom.   I am still going through the pendulum of emotions that come from having the diagnosis.     In hindsight I see so many areas and activities where Fisher was compensating and adapting.  At times I feel angry and guilty that we didn't realize that sooner.  I noticed his differences but I thought since he technically met his milestones that those differences didn't matter.   I remember my nieces doing that adorable little "toddler squat" and making comments on how toddlers can drop so low and just hang out down there forever.  I remember looking forward to Fisher doing that because I thought it was so cute!  He never did it.  In hindsight I see how his balance has been a struggle all along and for whatever reason there are many positions he doesn't want to or can't get in to.  Willow adorably does the toddler squat now but I can't help but be sad that Fisher never did it- and not doing so was a red flag.   In hindsight there were several other similar things that we laughed off or just simply didn't realize meant anything. 

I also think about his future with CP.   Right now Fisher doesn't really understand his differences or compare himself to others very often.    As I mentioned above he is masterful at compensating for his weaknesses and has realized his limits all along and he intuitively avoids activities and situations where he isn't comfortable.  I love his innocence and I worry for the day that those limitations bother him.  I dread the day that kids make fun of him for what he can't do or for what he does differently.  It makes me sad to think about Willow learning to ride a bike before her older brother does.  Or when Willow wants to go backpacking with me and Fisher has the desire but not the ability.  I can't help but think through these scenarios and it breaks my heart.  I try really hard to not project my feelings, frustrations, and sadness on him but inside I think about these things often.  I remind myself that only Fisher can define what CP is to him and he gets to decide how he feels about it as he grows older.  If riding a bike is not something that is important to him then I am not going to project my feelings of sadness that we can't go ride bikes together on him.   I was looking at the World CP map the other day and he came up to me and asked me what I was doing. I explained that he was on the map and that he has Cerebral Palsy and that was the reason he goes to therapy so much.  I told him that the map shows people all over the world with CP.  He looked at the map and said "Wow, mom there are a lot of people like me".    It warmed my heart.

Later that evening Shawn and Fisher were watching TV and a commercial came on about a medication for Bipolar disorder.  Fisher told Shawn  "Hey - that is what I have!".  Shawn was confused and asked him what he meant. Fisher said that I had showed him a map of all the people with Bipolar like him.  We got a good laugh out of that and explained again to him that he has CP.   He doesn't realize it is World CP Day but I do and I too and thankful to see the map and know we are in great company.  So Happy World Cerebral Palsy Day!  The theme for the day is "We are here." Although I am out of town for work and not physically with my son today I am proud to support him and others like him on World CP Day.  We are here supporting, encouraging, and advocating for our son so that he gets to define what CP is to him.  We are here loving an amazing boy and our lives are so blessed by him.   We are here with our son and always will be!

Saturday, August 29, 2015

Finally some answers

Two years ago at Fisher's four year well visit I had concerns about his speech and was planning on asking for another referral for a speech evaluation. He had been evaluated at three years old by two different speech therapists and both had said he was on the low end of normal and that didn't warrant therapy at that time.  But the pediatrician started asking other questions:

"Can he pedal a bike or a tricycle?"
                "Well no...I think he could he just never seems interested in getting on a bike and trying.  I guess I should push it more.  I am sure he could if he wanted."
"Can he button clothes?"
                 "No - but he doesn't really like clothes with buttons.  I think if he wore jeans routinely he could learn to button them.  And we are a tshirt type of family so we don't really have a lot of button up shirts."
"Can he draw shapes?  Does he like to color?"
               " No - he has no interest in drawing or coloring.  I know we have to work on it to get him prepared for school but he is just 4 we have time."
And on and on.

We left that day with a scheduled evaluation for Occupational Therapy and for Speech Therapy.  From those we found out he had significant  delays in fine and gross motor skills, sensory processing disorder, and speech impairments.  Many friends and family shared experiences of their kids and how fast they improved with therapy.  With a little therapy things were "fixed" and no one could tell the kid ever had delays or problems.  We dutifully took our son to therapy each week expecting that therapy magic.  It didn't happen.    We followed up with his pediatrician and new concerns came to light.  And that started the round robin of specialists and testing.   So many specialists.  So many tests.  Some were normal.  Most were not.  It seemed like each time we tried to chase down one answer five more questions popped up.  Every time we ruled out one potential diagnosis, we were referred to yet another specialist to rule out a new and different one.  This went on for two long years.  The list of Fisher's challenges continued to grow but we had no diagnosis and no real answer to what was going on and what to expect in the future.    This is such a  cruel, hard place for any parent to be.  The importance of early intervention is stressed so often - but if you don't know what "it" is you are working with - how do you intervene, how do you help? And with so many different problems what direction do you focus?  Where is the best place to spend limited time and money?   We spent so many hours wondering, worrying, assuming, researching, questioning, and waiting.  God the waiting.  I came to expect the week before the "big" appointments to be hard emotionally.  And I began to prepare for the freak out I inevitably  had after a doctor or therapist told me about the newest problem or they simply told me that they didn't have answers.  We began to hear over and over again from the specialists and therapists that he was all over the place and didn't fit any common diagnosis.  I grew so tired of hearing that.    According to many of the professionals his problems were either caused by an unusual genetic syndrome or the trauma he suffered at birth.  Some would speculate on which side of that fence they were leaning, some would not.  In my mom heart I always felt his problems were somehow related to the trauma he suffered from birth, but in my scientific mind I understood that I am far from objective on that topic. 

 It became obvious that if we were ever going to get answers they were going to come from Genetics or from Neurology.   I tried to prepare myself for the real possibility that we may never have answers or a diagnosis.  And for me - that is a incredibly hard pill to swallow. I am a data driven, researchaholic.  I draw strength and a feeling of control from numbers and statistics and without any answers and nothing to research I feel lost and vulnerable.
It takes a long time to get into many children's specialists and it also take a long time  to get genetic results back.  As we were awaiting the results of his genetic testing I thought about the impact those results could have for his future and Willow's too.    After a seven month wait the day finally arrived to meet with Vanderbilt Neurology, but I was concerned that the pending genetic results would keep the neurologist from giving us a diagnosis or direction.  So imagine my surprise when the neurologist started our conversation by stating "I see that all of his genetic tests came back normal so that is great news."  I made her repeat it.   That is huge!  And amazing! All the things that I was trying not to worry about rushed into my mind - this means that he doesn't have a syndrome with a young mortality expectation. This means that he doesn't have some obscure disease where he will stop developing at 6 years old.   I felt elated!
Knowing that pertinent information allowed us to get down to business with neurology. We know that several of his issues are a result of his brain not functioning correctly but what is it that is driving these differences?  Ultimately, the neurologist diagnosed him with apraxia and mild cerebral palsy.   She said it was too much of a coincidence to have suffered the trauma he suffered at birth and to have the problems he has.   And then she explained to me that the "good" thing about cerebral palsy is that it is what it is.  Meaning today is as bad as it was yesterday and tomorrow it will be no worse...or better.    What she said matched up with the physiatrist we saw a few weeks ago - Fisher's body has been trying to compensate from the trauma to his brain since he was born and it has been actually remarkable in doing so.  But he has reached the limits of those compensations and that is why we see the delays we see now.  She said he needs the trifecta of physical, occupational, and speech therapies to try to learn new ways to compensate.  He will likely always have physical limitations, with therapy he hopefully can learn to do most anything with accommodations.  She said that if he had plans of being a professional athlete he might be disappointed. Good thing he wants to be a scientist!  
So we finally have "it". We have a diagnosis and a plan.  I know it won't be easy but it isn't different from what we were already doing (he has already been doing all three types of therapies she suggests).   We have a better understanding of what his limitations might be and how we can help him overcome and accommodate for them.  We have a LOT to be thankful for and are taking comfort in the positives.  
And honestly - I knew it. My intuition has been telling me all along so  I am not shocked or surprised at the diagnosis.  I am more aggravated that it took so long to reach this point.    I would have been much more shocked, surprised and caught off guard had he been diagnosed with a genetic disorder.  

 One of my sisters gave me this sign and it has been my mantra the last few months.  It has reminded me that someway, somehow the search for answers would eventually end.  I am pretty excited we are at the end of that search and we get to move on to making everything ok.

So on to the next chapter.  The chapter where we can advocate for him and help him be the best Fisher he can be.  We get to love him, encourage him, and be amazed by him just like we always have been.  He gets to talk too loud about Skylanders for hours, declare nerf gun wars on us, and negotiate his way into getting what he wants just like always.     With wild man as the main character there is no telling how this chapter will end - but it is sure to be an exciting ride!