Monday, October 13, 2014

We did it!

A couple of months ago, I posted about the changes we would be making to our house to accommodate Carter's needs and allow our daughters to have their own bedrooms for the first time.  After I posted it, I lost my strength to do it.  I broke down in tears every time I looked at his room and thought about taking it all apart.  I just couldn't do it.  I knew that I would get used to the idea, but I needed time.  This weekend, I finally found the nerve.  So without hesitation, I started cleaning out the downstairs closet so I could start the rigorous work of taking all of the important things in Carter's room and moving it all to a closet.  A task that was not only tiring physically, but emotionally as well.  My little boy is almost 6, so there were tons of things to go through from over the years.  I reminisced about each memory and carefully placed the knick knacks and art projects into boxes for now…I pulled strength from some place way deep down inside that I didn't even know was there.  I spent half of Saturday organizing and moving things from one place to another until all three kids' closets became their very own.  On Sunday, my best friend came over to help me disassemble Carter's hospital bed.  This process took us about 2 hours.  When my husband got home, He took apart the bottom platform and motor so that we could move the 100 pound piece of equipment to the dining room.  Once that was down, the reassembling process started.  After an hour, the hardest part of the whole ordeal, was over.  My moment of strength as we maneuvered the platform downstairs was when Carter started bouncing up and down on his knees with the biggest belly laughs ever.  He smiled and enjoyed seeing his bed coming downstairs.  Despite my sadness and misery of the changes, he was happy.  I think it was his way of showing me that he is okay with the changes and he understands that it's for the best.  He knew his mommy needed encouragement after the challenging weekend.  A room is insignificant and irrelevant to Carter; all he knows is that this is home, whether his things are in a closet or a bedroom.  All he knows is that he is loved and for him, that is enough.  Like I said in my other post about the arrangements, a bedroom and decorations were more for us, than him.  I talked to several family and friends about our plans over the last few months and every single person agreed that this was a good idea and would make our lives easier.  I want to thank each and every one of you for giving me words of encouragement and supporting us every step of the way.  I want to thank my best friend, Alison, for coming straight over when I told her my battle with the hospital bed.  

This next 6 months is full of more appointments, testing, our growing family and many birthdays and holidays.  We will take each day one step at a time.  This journey never gets easier but we do get stronger.



Monday, October 6, 2014

Crunch time

We are only a few months away from Carter's 6th birthday.  I've said this many times before but as each birthday approaches, that excited yet worried mixture of emotions arise.  Over the last few years; since Mitochondrial Disease was first officially made a big part of our lives, the endless question that lingers above our heads is life expectancy.  As Carter gets older and his struggles get more confusing and baffling, we are left with more questions than answers.  This last year has been tough because we thought we had finally made a break through with Carter when he learned to cruise and stand with seemingly endless strength and energy.  But those dreams faded within 6 months when he regressed back to sitting, scooting and very little energy.  Many of his struggles have been on and off over the years, but there are new issues that we are facing.  He has a lot of trouble with urinary retention (unable to urinate consistently on his own), he has very little strength in his legs and he is extremely aggressive to his face.  We have new specialists including urology, neuro surgery and behaviorists.  But the hardest part of this is that most of them don't know why he has these struggles and it always goes back to the "easy answer"…it's a Mito thing.  A Mito thing.  A Mito thing.  An answer that I am not okay with.  Are there only blinders on for most doctors when a child comes through the door with a questionable diagnosis?!  One that many doctors don't even fully understand.  So instead of looking at each problem and forgetting that their is this underlying condition that COULD be just a small PART of his problem, they are quick to brush it off as if there is nothing they can do.  Over the last few months, I have accessed all of his medical records myself and scoured through the many tests and reports trying to find the missing puzzle pieces that have been brushed under the rug.  And through my search, I have found things that have made me angry yet determined to find new answers.  The result of my search has been that we seen orthopedics to discuss his subluxed hip (the ball of his hip isn't quite in the socket like it should be and therefore his hip sockets have deteriorated) and they are trying to figure out a successful method to correct this.  We also saw urology to discuss his urinary retention and we were trained on catheterizing him at home to help him empty his bladder completely.  But during this appointment, for the first time, the urologist looked at the deep dimple in Carter's lower spine that he was born with, but that doctors have never looked closer at.  She explained that it COULD be a tethered cord or spinal problem.  IF it's this problem, it could have everything to do with his constipation, urinary retention and leg weakness.  This could be life changing for Carter because a neuro surgeon could correct the problem with surgery. Why this hasn't been addressed or taken more seriously over the years, I will never know for sure.  But within the next few weeks, Carter will be having a sedated spinal MRI, bladder and kidney ultrasound, bladder pressure test and a dye study of his ureters to make sure his urine doesn't back up into his kidneys.  And as if this isn't enough already, we have decided to take Carter to the Cleveland Clinic for another opinion.  We want to see their big Mitochondrial specialist to make sure the med list is okay and see what he thinks about Carter's protocols and over all care.  While there, he will also be seeing an epilepsy and gastro doctor. We will be going there next month for a few days.  I want answers, not questions.  I want to make sure that Carter has the best quality of life possible in the years he will be with us.  It may seem crazy to many people that we are booking so many things so close together, but as many people know; Carter has a new baby brother/sister on the way (due in March) so we are trying to take care of everything important as soon as we can!  It will be hard for us to travel as the winter months come as well as a new baby.  It's crunch time in our home in so many ways.

So as Carter's 6th birthday quickly approaches, bear with me as we embark on many new tests, appointments and specialists.  Ready or not, here we come.

Tuesday, September 23, 2014

I gave up...

I gave up a while ago, but not in a way that you would think.  Anyone who is not in our shoes, may not entirely understand but let me try to explain.  Giving up doesn't mean we have "given up'' in a sense.  When we tell people about our son's medical problems and how difficult it is to see him gain and lose all of his skills, a popular phrase we hear often is, "no one knows what Carter's future holds, miracles happen every day" or "doctors don't know everything".  And I totally 100% agree, but there's another side to this as well.  Have you ever wanted something so badly, that you forget to appreciate what you DO have?!  When Carter was a baby, I hoped so badly that he would catch up in development or start doing the things his therapists worked so hard on.  I spent most of my time wishing for something that wasn't there.  I cried for all the things I had dreamed about for my first child.  I wanted all of those mommy experiences that every mother imagines.  I wanted to take Carter to the park and watch him make friends, I wanted to share my favorite snacks and foods with him in hope that he would follow in my footsteps, I wished for the day that my husband could play sports with his only son.  And over those years, I neglected to appreciate the miracles in front of me.  The smiles and giggles that Carter had over the rare toys he enjoyed.  The glimpses of eye contact that we worked so hard on in speech therapy.  The negative test results for devastating disorders that doctors wanted to rule out.  I let all those things pass me up while I still held hope for bigger things.  Without even realizing I had given up, I did.  But something different happened that may seem contradictory.  I didn't lose hope nor did I feel defeated.  Instead I feel empowered, stronger and happier.  I celebrate all the little things and brag to my family and friends about Carter's favorite squishy ball.  I laugh and enjoy the funny faces Carter makes when he watches his sisters dance and sing.  I clap and applaud when Carter poops on the potty.  I feel triumphant when Carter has a pain free family vacation where he is happy the entire time.  I go on and on about the 12 ounces of pureed baby food that he has consumed twice a day for a month now.  Do I dwell on the what if's and possibilities that could happen at any time in regards to Carter's medical conditions?  Yes, every single day.  Do I always hope for a new cure or treatment that will help my child live a better and longer life?  Every moment of every day.  But I give up on wishing for something that isn't meant to be for my son.  And the most important part of this, is that I am OKAY with that.  Being okay with something I cannot control, was the hardest obstacle by far.  I believe that miracles sometimes create unrealistic expectations.  Miracles don't always mean a magic cure or over night phenomenon.  In my world, miracles are simply every little thing that my son does.  He is alive, he is happy and he is beautiful.  THOSE are true miracles.  So I beg of my family and friends, to understand when I say that I have given up and that you will understand and respect that I don't wish for perfection anymore.  I don't beg God to change to my child.  Would you want God to change your child and the gift you have been given?  My every day miracle goes by the name "Carter".

Monday, September 8, 2014

The love of a sister

Having children is amazing in so many ways.  But there is something oh so very special about seeing your children become siblings and growing together; in more ways than one.  There's nothing I love more than seeing my 2 year old grow into such a loving, devoted sister to her extra special big brother.  She watches him go through hours of therapies, receive tons of meds every day, get feeding tube boluses and non age appropriate care (diaper changes and baby food meals).  Instead of her questioning or wondering why he doesn't walk, talk, eat regular meals and go on the potty, she learns how we do things and she does her best to help.  She cheers her brother on when he tries so hard to stand or he finishes a bowl of sweet potatoes.  She even helps feed him her applesauce to which he cracks up laughing.  She stands in front of him as his therapist helps him walk and she waves her hands as she says "come on buddy, you can do it".  When his speech therapist works on reciprocal sounds, Lily reminds her that "Carter can't talk".  It's simply amazing what she understands even when she never asks why.  To her, it's not a question of why.  To her, nothing is wrong with her big brother.  To her he is simply "my Cart, my brother".  To see unconditional love and devotion like this, is everything I ever hoped for, for Carter.  Lily is truly her brothers best friend and he is hers.


Monday, August 18, 2014

Reality isn't always ideal...

As our family is growing, we are also outgrowing our house.  But like many families in our situation, it is difficult to sell our house and get a new mortgage to accommodate our needs, at this time.  I am grateful for the years of experience and growth to get us through this obstacle.  Nothing in the last 5.5 years has been by the book or as planned.  As our journey has progressed, we have learned to make pavement out of gravel and to see flowers in a field of weeds.  So as we look around our house at all the things that just aren't working anymore, we are brainstorming ways to make the best of it.  Last week, a friend of ours showed up at our door and started tearing the wall apart in our kitchen to bring the plumbing and electrical up from the basement so that we could move our washer and dryer to the main level.  A wish on my long list for many years.  He made it happen and happen it did!  Laundry was a mountainous task for me each week, because I don't just have a Sunday laundry day…I do laundry daily.  Carter's clothes must be changed many times a day and so do his blankets that get soiled quickly.  I was climbing two stories every time I did laundry.  This huge change fueled us to keep going.  Stairs have become the worst feature in our home.  Our only bathroom is on the second floor as well as all of the bedrooms, so no matter how we refigure our house, we have to carry Carter upstairs for baths.  As lovely as his hospital bed is, it also became an issue quickly once he learned to pull to stand and bang his head on hard things.  We had the DME company add padding to the panels of his bed, but it's too thin for the type of rocking and head banging our little hercules does.  So we have had Carter sleeping on the couch or padding on the floor in our living room for quite some time now.  And my husband has been sleeping on the long end of the couch to be near Carter, in case he refluxes or struggles.  If the hospital bed is in the dining room, we can use it for changing Carter and he can sleep in it once he is fast asleep.  We have thought about all different ways we could add on to our house or turn certain areas in to something else, but we have finally caved in and decided…no renovations and no more procrastinating.  We have battled for years to keep Carter's life and our lives as "normal" as possible, even when we understand that our lives our anything but "normal".  I am the type of person who likes things to be in their rightful places, so the idea of turning our beautiful dining room into a bedroom without privacy and a door, has been daunting.  But this is where we are at this time.  It makes sense and is a viable option.  All of our other dreams are far from reach, unrealistic and unpractical.  So here we are.  As I think about moving Carter's hospital bed to our dining room and putting his clothes in the coat closet, I feel my heart sink and my emotions in over drive.  As easy as it would be to drop to my knees and cry, I know that I can't.  it has to be done.  As much as I love to walk into Carter's bedroom and see all of his precious art work, U of M souvenirs and gifts from over the years, I know that a bedroom is silly in the big picture.  Carter doesn't even use his bedroom.  We wouldn't have him sleep alone in his bedroom because of the risk he will reflux and aspirate.  He doesn't have a collection of his favorite toys to put in his room.  He doesn't even step foot in there these days.  The realization of THOSE things is what kills me.  Even after 5.5 years of knowing that my child has special needs, it's moment like this that consume me.  It's a small piece of "normal" that I held on to for dear life all along.  Carter can have adorable outfits, wall hangings, colors on the walls that make us think of him, a car track rug and Pensacola memories from when he was a baby to adorn the furniture.  But all of those things are for us, not for Carter's reality.  He could care less about most of those things.  So when the tough choices are in front of us to rearrange those things in to something that makes sense, I must let go of those small pieces of sentiment.  I loved the idea of having a place we called Carter's…a place I could walk in to and pretend that Carter was just like any other kid.  It was a facade for my sanity.  A new plan has been cultivated, ready or not.  We will paint over the blue walls in a color that our oldest daughter chooses and move her day bed where Carter's hospital bed used to be.  We will let her organize all of her art supplies and toys in a space she can call her own.  Our house will transform this weekend in to something that is long over due.  It will become a little more handicap accessible and suit Carter's needs at last.  As hard as I try to type this out and not cry, there are tears pouring from my eyes.  I sort of feel how I did a few years ago when I was facing a diagnosis and feeding tube…and all of my hopes that we would find a doctor or answer that would tell us that Carter would be fine and that this was all just a bad dream, vanished.  There are moments in our life that change everything and turn what was into what is.  There's no turning back.  I know that the time in this house will come to an end when the time is right and we will move to a house that is perfect and Carter will again have his own bedroom where there is no stairs to battle.  I know that I will look back and chuckle as I remember my inner struggles with this temporary plan.  But right now, I must be strong and let it be.


Sunday, July 13, 2014

Mighty Thursday

This coming Thursday is very important.  It's a day that Josh and I have counted the days down to.  Over 7 months ago, we went to a genetics appointment where we decided to move forward with Exome testing on Carter.  In order to do this test, all 3 of us had to give a blood sample and we signed many consents agreeing on the steps of the test.  This is the last genetic testing that is available at this time and our hope is to find the mutation in Carter that would explain why he is so severely affected.  To this day, every single genetic test we have done, has come back normal.  All we know is that his Mitochondria in his muscle biopsy have mild defects, but it doesn't tell us why.  The reality is, we still have no idea why Carter has what he does.  Some people may wonder why we keep searching since there won't be a magic fix and it won't change our treatment options.  But to us, it is important.  The hardest part of this journey, is not knowing why.  We don't know what the risk is for our girls and their future children.  So when the mention of Exome testing came up, we didn't even hesitate to move forward.  It was on December 11th, 2013 that we sent our blood samples off to a special lab in another state and started the waiting process.  One month ago, we got the call that results were in and we scheduled the follow up.

The events of this next 2 weeks has lined up in such a way, that I have to believe it's all meant for a reason.  Some special reason.

With the 5K in Carter's honor fast approaching, we were invited to be on a segment of our local TV show called the Bart Hawley Show.  Luck would have it that the only day they can have us on, is Thursday.  We will leave the hospital from getting Carter's Exome results and head straight to the studio to be interviewed.  All the reasons that we are planning this event to raise money for research is what we are anticipating at this appointment.  Our biggest hope is that researchers can better pinpoint Mitochondrial mutations, treat them and ultimately, cure them.  That all begins with answers.  And here we are, going on TV to talk about the event and why it is so important to us.  I am nervous and excited for the entire day.  I have no idea what to expect or how I will hold up.  But in my heart of hopes, I hope that we get answers, that I hold strong during our interview on TV and that our event is a huge success so that as all these things line up, we can make a difference.

Stay tuned…


Wednesday, July 2, 2014

Funny things called shoes

There are many things that have made me cry throughout our journey with Mitochondrial Disease; many of which don't require explanations or listing.  But there are many things that go along with our struggles that many may not realize could cause such grief.  One of those things is shoes.  Yes, shoes.  I have cried more times over shoes, than many of the "bigger" struggles.  To many people, this may sound silly and irrational, but unless you have struggled in the ways we have every step of the way, you may not understand.  Literally.  When Carter was born and still in the hospital, his pediatrician told us that we would need to see an orthopedic doctor right away to have his feet looked at to determine whether he had clubbed feet or not.  When he was only a week old, we made the hour drive to a children's hospital for his very first specialist appointment.  We were very fortunate that he did not have clubbed feet and the doctor told us that they would flatten out and become more straight as he grew and began walking.  As many of you know, the days of walking never came.  Therefore, he never put the weight on them that was necessary to flatten out his feet.  The birthdays, holidays, growth spurts and family pictures came and went.  And throughout those events, it was near impossible to find shoes that fit him or stayed on his feet without causing him pain and sores.  When the days of orthotics came, so did more horrible shoe shopping trips.  I have walked through shoe departments in every store you can imagine, looking at all the cute loafers, dress shoes, tennis shoes, sandals and boots with tears in my eyes and frustration in my heart.  None of them fit Carter.  We had to buy shoes that were 2 or 3 sizes bigger than his actual feet just to accommodate his orthotics or extremely curved arches.  To be completely honest, Carter has spent majority of his life shoeless or in socks.  Two years ago, my uncle offered to get Carter shoes at our local speciality shoe store for his birthday.  So we took him to get fitted and the shoe professionals showed me the shoes that were extra wide and very flexible.  To my total surprise and joy, they fit.  And not only did they fit, but they were so cute.  Saucony brand isn't carried in most stores and has to be ordered (taking almost 2 weeks to arrive).  But they were everything I wished for in shoes.  Of course, the price tag is much more hefty than my bargain shopper heart would like to spend; but who can put a price tag on something like that?!  My uncle bought him TWO pairs of shoes that day.  And because Carter's feet didn't grow because of the lack of weight bearing, they lasted over a year!  And as miracles would have it, Carter started to stand, bear weight and take steps with assistance, which has made all the difference in Carter's arches and shoe growth!  His feet are growing at record rates!  He has went from a 5.5 to a 10 in one year!  When the time came to buy him more shoes, without hesitation, I went to the specialty shoe store again.  But this time, I didn't want to wait for the Saucony brand to come in and settled with Stride Rites.  A choice I will never make again.  The Stride Rite's just didn't have the stretch, flexibility and perfection that the Saucony brand offers.  Unfortunately, his new shoes didn't last long before making red spots on Carter's ankles and my shoe dilemma persisted.  I expressed my frustration with my aunt and she told me she wanted to buy them this time and to look for ones that would work.  I went back to the specialty shoe store, but found that they had closed early due to summer hours.  So I decided to take Carter somewhere that I had never taken him before.  Off we went to Foot Locker; a small doom in the pit of my stomach.  When we got there, the nicest man approached us and asked what we were looking for.  I asked him if they carried Saucony's in stock, which they did not.  He told me that they had a pair of Nike Free's that were similar to what I was wanting.  So I figured, "what the heck, let's try it out".  Once Carter had been sized and we discovered he had grown another shoe size in 3 months, the man was off to the stock room to get a pair for Carter to try.  As soon as I laid eyes on that bright orange pair of Nike's, I fell in love!  The man in Foot Locker probably thought I was totally crazy before I had explained the years of shoe grief.  I stood there admiring that shoe and saying, "it's so flexible and soft and adorable and it has STRETCHY shoelaces!!!"  The part of Cinderella came to mind when the kings men are slipping the glass slipper onto Cinderella's foot and it fit perfectly.  I could see the clouds part and all the shoe gloom dissipate.  When I called my aunt to tell her what perfect shoes they had, she told me to get him a pair in the next 2 sizes as well.  I cried right there in the store, but this time they were pure happy tears.  How do you explain a moment like that in the right words?!  This all happened over a week ago and it's taken since then for me to sit down and type this out.  It's these "small" things in this big journey that carry so much significance for so many reasons.  Out of all the atypical things that go along with a medically fragile child, a dilemma like shoes can become the tip off the iceberg.  I have tried for so many years to make Carter's life as "normal" as possible.  The man at Foot Locker made this shoe shopping all the more wonderful as well!  He asked me questions about Carter's disease and how old he is and listened to my story about shoes.  He even introduced Carter to his co-worker like he was just another friend of his.  It made my day!  What a funny thing a shoe is.

A very special thanks to my precious aunt who so graciously bought Carter these perfect shoes!  And a special thank you to my uncle who helped me find the first couple pairs for Carter's 4th birthday.  And thank you to the special man at Foot Locker for listening to my stories and treating my son like he was the coolest kid in the store!  It is because of good hearts like all of yours that my special boy has such amazing shoes and this momma has a peaceful, happy heart <3