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.