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.
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.
***************
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?
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.
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?
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.
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?
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.
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?
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.
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?
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!
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?
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.
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?
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.
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.
***************
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!
What a beautiful family!
Thank you for sharing your story and educating us. Logan is adorable!