Friday, March 21, 2014

Special Needs Spotlight: Michael




Hi! Thanks for letting me be apart of your spotlight today.  My husband Mark and I have 3 beautiful boys.  Michael who turned 7 this week, Alex is 4 and Anthony is 15 months.  We live in Cincinnati, Mark works for a local bank and I am blessed to stay at home with our boys. When Michael was 18 months old he was diagnosed with a Juvenile Pilocytic Astrocytoma, a brain tumor.  To learn more about pediatric brain tumors visit http://www.curethekids.org/

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Miggy:  Hey Alicia, thanks so much for participating in today's spotlight.  Your son Michael was born healthy, then later developed a tumor that led to some pretty major problems.  Take us back to the beginning, what were the first sign something was not right with Michael?  How long did it take you to get a diagnosis and do you remember how you felt when you finally did?  Can you compare those first thoughts and feelings with how you feel now? 

Alicia:  When Michael was 15 months old, we were starting to figure out something wasn't right.  I noticed a random type of eye movement, a nystagmus, where his eyes wouldn't focus.  We talked to the pediatrician and then went to the optometrist.  The eye doctor gave Michael some glasses but that didn't really help.  Michael wasn't walking yet, but he was standing.  We got in touch with Early Intervention services because of the glasses and they helped us put the pieces together.  His soft spot was not closed, and the day the physical therapist came over to evaluate him, he wasn't standing well and was wobbly.  We went back to the pediatrician and at the 18 month check up Michael's head circumference had shot off the growth charts.  The doctor sent us to do a CT and before I knew it we were at the local children's hospital headed to surgery.  Typically seizures, nausea, vomiting and headaches are other signs/symptoms of brain tumors.  Michael probably had headaches but couldn't tell me.  He didn't have any other symptoms, he did wake up crying a few nights and he wasn't sleeping well.  His tumor was 9cm when he was diagnosed, the surgeon said for it to have grown so large, he had probably had it since he was born and we didn't know.

Michael has a large brain tumor that originates from his hypothalamus and pituitary area of his brain.  He has had three surgeries and has been on chemotherapy since his diagnosis in an effort to keep the thing from growing.  It is considered a grade 1 tumor, it is unlikely it will metastasize and spread to other parts of his body. Because of where his tumor is, the doctors will never be able to totally get rid of it, it's just something we have to manage.  The tumor also blocks the ventricles that drain cerebral spinal fluid from his head so he has hydrocephalus and has a shunt to manage that.   A week after his initial diagnosis and hospitalization he had a seizure and a stroke.  The tumor had grown and blocked the flow of blood to the right side of Michael's brain, it also caused him to lose most of his vision.

The first weeks and months after diagnosis were very scary.  I remember the day they told me Michael was blind, I cried myself to sleep.  I didn't know what to do or how to take care of my beautiful blonde hair, blue eyed boy, who was standing and babbling and now, he was like a newborn again.  I didn't know what the future would be, I didn't know if he would even make it.  I was very scared and I did a lot of crying and worrying then.  Now I am a lot more confident in caring for Michael and his needs.  And yes this diagnosis affects our life, but its only a small part of it.  I have met some incredible people through this journey, teachers and therapist that I love like family.  I wish I could go back in time and wrap my arms around my little scared self, and whisper "it will be ok."



Miggy:  How long after the initial diagnosis did Michael lose his eyesight and how has he adapted to this 'new normal?'  Also, tell us about the stroke and the effect that has had on his body as well.     

Alicia:  Michael was probably losing his eyesight as the tumor was getting bigger, I just didn't know it.  It sits on top of his optic nerves so his vision is very poor.  Michael's stroke was on the right side of his body, so he has left side weakness. He has very little movement in his left arm and left leg.   He was diagnosed at 18 months and these other complications happened very soon after, so really, this body is all Michael has known.  After the stroke he was basically like a newborn again.  He came home from the hospital with a feeding tube and couldn't even hold his head up by himself.  Since then he has relearned how to eat, drink, talk, sit up and has made some huge progress.  He is able to  scoot around the house on his bottom to get where he wants to go, and he asks for help when he needs it.  He is a pretty easy going, happy kiddo.


Miggy:  Explain how Michael's needs affect your day-to-day life.   

Alicia:  Michael is seven years old, but I still tend to most of his needs. Everything you do for a one year old, I still do for Michael from getting him dressed in the morning to changing his diaper.  He is currently on an oral chemo therapy so he takes medication in the morning and at night. He goes to therapy twice a week at Children's Hospital and is in 1st grade in a mainstream classroom. He has a walker and is learning to walk again, but most places he rides along in his bright shiny red wheelchair. As a family, we tend to avoid activities like the zoo or museums because those type of things are boring for Michael.  Also large gatherings of people can be overwhelming to him, because of the noise.
       
                                                                                                
Miggy:  What are the biggest worries you face for Michael?     

Alicia:  My biggest worry is one day I'm going to go to Michael's appointment and the doctors are going to tell me there is nothing more they can do to treat this tumor.  Even typing that, makes me a little sick to my stomach.  I want Michael to be happy, to have friends, to laugh and to live life to the fullest for as long as he can.  Beyond that I try and take one day at a time, and remember that I love Michael, he is blessing, and all I really have is today.  


Miggy:  Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situation?

Alicia:  I'm sure we've had lots of these moments, but one that still makes me laugh.  We were at the store looking for shirts for an upcoming Disneyland trip.  Because of the hydro-cepahlus Michael's head is quite a bit larger than typical kids, it's the same size as an adult head.  For a long time, we just bought him button up shirts because that's the only thing that worked.  I was looking at this cute Mickey shirt, but wasn't sure it would fit, the neck opening looked a little bit small.  I said to my husband, "think this will work, here try it on." I was sort of kidding, but he takes the shirt from me and tries to put a small size 4T Mickey shirt over his head.  It didn't fit and we didn't end up buying it, still makes me laugh.


Miggy:  How can people best approach or respond to Michael? Is there something you wish other people knew so as to avoid awkward or hurtful situations?  

Alicia:  I just wish people wouldn't stare.  I get tired of it, I know my kid looks different, and if you're curious ask me about him.  I'll tell you how awesome and funny and smart he is, and yeah he's in a wheelchair, but that's a small part of him.  I would rather you ask then stare.  Please remember this is my kid and I love him just as much as you love your kids.  I would move heaven and earth for him.


Miggy:  I know from firsthand experience what a special role siblings can play in your special needs journey.  Is there anything you’d like to share about your other children and their relationship to Michael? 

Alicia:  My middle son Alex is a great brother, he is very helpful and kind.  He gets toys for Michael when he can't find them and reaches things like, light switches that Michael can't get from the floor.  Anthony is just 15 months but its sweet to see him put things on Michael's lap that he wants Michael to see.




Miggy:  What is the biggest lesson you’ve learned since becoming a special needs mom?    

Alicia:  There are so many, but one that I have to keep reminding myself is to slow down.  To take one day at a time, one year at a time.  I don't know what the future will hold for Michael.  But I look back and see how much progress he's made in 5 years since diagnosis, I can't wait to see where we are in five more.

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Alicia, thank you for sharing your beautiful son with us today.  What a journey.  You know I always ask people what they wish others knew so as not to offend and I don't think anyone has just come out and said it, "I just wish people wouldn't stare so much!"  AMEN.  Or as one spotlighter once said, if you're going to stare, stare with a smile.  And it's true!  A friendly stare is so much easier to handle.  And I think your final paragraph rings true for all us special needs parents--we can't focus too much on all the unknowns, we've got to take it day by day.  Thanks again and maybe we'll run into you guys when we move back to Cincinnati.  :)

As always if you or someone you know would like to participate in the special needs spotlight please email me, or have them email me directly at thislittlemiggy at gmail dot com.

Have a great weekend!  



2 comments:

  1. Made me cry again today. There are so many incredible and courageous parents and kids out there, I'm really glad to be able to 'meet' them.

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  2. Love this family. They are lovely and Amazing!

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