Friday, April 11, 2014

Special Needs Spotlight || Logan




Miggy, Thank you for giving us the opportunity to share our story! We love talking about Logan and our journey with him. My husband Brian and I got married in June 2010 and we knew we wanted kids shortly after we got married.  We were so excited to find out I was pregnant but had no idea what challenges lied ahead.  When Logan was born he couldn't breathe on his own and he was very floppy.  After a week in the NICU close to home and no idea what was wrong with Logan, he was transferred to another children's hospital.  Every kind of test imaginable was done on Logan, and finally after what seemed like the longest 7 weeks ever, Logan was diagnosed with x-linked Myotubular Myopathy, a very rare and devastating muscle disorder.

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Miggy:  Hi Kathleen!  So glad to be sharing your sweet Logan with my readers today.  Thank you for participating.  Tell us about when you first found out about Logan's condition--was it shortly after birth, before birth or sometime later?  Do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now? 

Kathleen:  The only implication that something was wrong during the pregnancy was a increase in amniotic fluid the last trimester.  My OB kept a close watch on me, but we wouldn't know anything until Logan was born.  Once Logan was born it was evident that something was wrong.  He was very floppy and unable to breathe on his own.  All I remember feeling was scared, worried and overwhelmed.  Logan being my first child, I never imagined this happening.  I would say now, that we have faced with Logan's medical issues for over 2 years, those feelings don't even arise unless Logan is really sick.  He is our little blessing and we enjoy taking him out and letting him be a kid like every other kid.


  
Miggy:  Would you please educate us on X-linked Myotubular Myopathy and explain how Logan's needs affect your day-to-day life?  
     
Kathleen:  X-linked Myotubular Myopathy is a rare form of muscular dystrophy.  It affects all the muscles in Logan's body including the muscles that help us swallow and breathe.  MTM affects males but females can carry the gene and have mild symptoms.  There are 300 known cases to MTM in the world.  No ones knows the prognosis of MTM because it is so rare, but we have been told most don't make it past the age of 10.  Logan has a tracheostomy that provides a clear airway in a emergency situation, and he also has a home ventilator that he uses at night and when he's sick.  Logan has a feeding tube that all of his feedings are given with. Logan needs 24 hour care and we have nursing for 18 of those hours.  Logan needs physical, occupational, and speech therapy every week. Luckily we do have a special needs school in our area that Logan attends.

                                                                                                     
Miggy:  What are the biggest worries you face for Logan?    

Kathleen:  My biggest worry is every parents worst nightmare.  Losing their child.  I know that one day this awful disease could take Logan’s life.  I'm not prepared for that.


Miggy:  How can people best approach or respond to your Logan and your family as a whole? Is there something you wish other people knew so as to avoid awkward or hurtful situations?    

Kathleen:   Talk to us.  Ask us questions. We are not afraid to talk about Logan's disability. But we ask, please don't feel sorry for us. We want Logan to be treated like a normal person.




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 situations?  

Kathleen:  Funny you ask that. Logan has such a brilliant, goofy personality. He has a passy muir valve that we can put on his trach that allows him to make sounds.  Logan can put his finger in the valve and make a honking noise that sounds just like a goose.  He face lights up and you can't help but laugh.  He's quite the comedian!


Miggy:  I know I never imagined having a child with special needs until we suddenly found ourselves in that situation and I imagine most parents feel the same way.  Are there some ideas you had about having a child with special needs that have since changed?  Any advice you would give to another parent starting a similar journey?  

Kathleen:  Patience is something I never use to have, but I learned real quick to have patience with a special needs child. Be your child’s advocate.  Don't stand down to anyone if you need something for you child, whether it be some kind of therapy, equipment, or support.




Miggy:  What is the biggest lesson you’ve learned since becoming Logan's mom?   
Kathleen:  Cherish every moment. We were given Logan for a reason. He changed Brian and I in a way I can't explain, but things that use to matter, don't matter anymore.  Being a mother is the greatest gift you can be given, but being a special needs mom is the best gift of all.


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Kathleen, thank you so much for your beautiful words and sharing your sweet Logan with us.  I love the last picture of your family--you can just see the joy on all your faces.  And I think that's one thing I loved most about your spotlight--despite Logan having this extremely rare condition you love your life, you love your son and it shows.  And yes to "please don't pity us."  I think sometimes people confuse compassion with pity--they are not the same thing and pity is truly not helpful and can even be offensive.  (I feel a blog post coming on...)  Thanks again Kathleen and keep being the amazing warrior mama for Logan that you are.

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. Anonymous2:58 PM

    What a beautiful family!

    ReplyDelete
  2. Thank you for sharing your story and educating us. Logan is adorable!

    ReplyDelete