The Twins Become more like Twins than Ever!

So today we are getting closure to Madison getting to feeling better.  She now has a Port.  There is something wrong with this.  No Mother should have both her kids with a Medical Line in their body.  Once step to realizing how sick my little girl is.  As sad as it is for me, you should have seen the "joy" in TJ when he found out Madison was going to be just like TJ.  First thing when we got home, he wanted to see it.  The Bond Between Twins is Real. 

Can There Be Life at the End of the Tunnel?

Wow, I originally started to blog in November 2010, as you can tell I did not get very far with that!  That does not mean our lives have been boring since.  So much has happened.  My babies have gone from Thirteen years old to Seventeen years old.  Still have not had normal lives.  Still TJ is usually a happy camper.  His health is not as healthy as it use to be.  He has gone from TPN I/V feeds back to his G/J tube feeds an he now needs Normal Saline I/V fluids at night to help with Dysautonomia issues such as many bladder infections other issues in that department.  He has had a Fractured Femur from just doing therapy.  Many Central Line Infections, Spinal Surgery, Scoliosis worsening to where he is having a harder time breathing to where the doc wants to switch from oxygen to a CPAP.   He is not my baby any more, he is a young Man.  My adorable young Man.  Who still loves to flirt with the blonde's.  Yep, you can see that head turn when we are strolling down the clinic hall or hospital halls, what an adolescent.  But the main thing, my adolescent is happy and life is the way it was going to be since day one.  No mother wants that for their child and will never be completely happy but in time you learn to adopt to the situation.  I guess, I learned that from my Mom.  A Mother should never bury their child and you think they would never be able to bare that much pain.  Watching my parents, they never do, they just learn to cope in different ways. 

Madison, who was suppose to be my healthy child and was suppose to stand by and watch TJ get all the attention for being being the so called "special needs" and take it for so many years, she did.  The rude comments that were said to her, that TJ needed the attention she was fine, the pain she endured for so many years.  My sweet shy girl who would do anything for her TJ, who knew her world would end like this.  This was my Sports Girl, Pre AP Student, Perfectionist, almost OCD girl.  The one the doctors thought was trying to steal attention from TJ.  As a Mother, you know, and  I knew she was not faking.  The things she would say and the way she would articulate her pain, there was no way my precious girl was faking.  Then some answers were coming and they did come but still not enough.  My sweet girl continued to deteriorate in front of  our eyes.  Days turned into Weeks, Weeks into Months, Months into Years.  A childhood gone and you cannot get it back.  In my eyes her situation is so so much worse.  Her life was not suppose to be this way, she had it all and slowly loosing it all, the pain and the no answers.  The friendships lost.  I have learned to hate Mito.....  Some families can have lives and do things, the longer my kids have this Damn Disease we are stuck in this house.  This house that gets littler and littler and the walls are closing in.  Not to mention my aches and pains that come and go.  Are they older aches pains are they Mito aches and pains? 


So that is pretty much from 2010 to 2014.   Except there is more Diagnosing going on that I will share when the confirmation comes in.  I guess that is my sudden need to change my mind on blogging.  World can seem like it stinks even more.  But when you feel this sad and alone you have to find the good.  So here is today's good.  TJ's Hicentra was approved after a doctor wrote another letter and I had to put out my "Momma Bear" writing.  The Big Big Great News.  TJ's new Tobbi was approved.  So a new Eye Gaze Computer should be coming soon.  Then he will be getting his Internet on his computer.  He will be able to call peoples cell phones.  Don't make me mad or I will give him your cell phone number, he has been practicing!  As always my Great Family Support, could not do it without them.  Next week, when I know things for sure.  I will be blogging a status blog.  Hoping for a Healing Blog.  We are going to get some of My Sweet Adorable Girl's Life Back!

When did I first hear the "word" Mitochondrial Disorder"????

It was a couple of years ago when TJ was at a Genetic Appointment.  I explained to the doctor what had happened to Madison when she was in the 4th grade and admitted at TCH for pain treatment for a chronic migraine and she had a severe reaction to "depokene" a seizure medicine that is sometimes used for migraine relief.  It caused Madison to go into almost liver failure.  It was one of the most scariest things I have every been through.  To whatch her deteriorate so fast and be taken from the floor into ICU and for a Migraine.  I had been through a lot with TJ in all these years, but Madison was my healthy one, to watch in her this condition was heart wrenching.... The genetic doctor at TCH said that I really should have Madison screened for a Mitochondria Disorder.  I held on to this diagnosis for a while as Madison was not having bad Migraines at that time.   Several months later after I received this information, Madison's migraines escalated again.  Her Neurologist was Dr. Dryer at UT Physicians as her Neurologist at TCH had fired her right after the "depokene" incident....  So on Madison's next Dr. Dryer appointment when her Migraines were worse and I explained the "depokene" reaction, he agreed about the Mitochondria screening and indicated that they had the Mitochondria Director in their department.  We scheduled the appointment with the famous "Dr. Koenig" and on our first appointment with her and she heard the "depokene" incident, that was all she needed to hear and all the Mito testing began and so has my addiction to Internet researching!

Madison's first blood work came back with abnormalities but not gross abnormalities so we proceeded with the "muscle biopsy".   We went to the hospital on her scheduled surgery date, followed the nothing by mouth after midnight and everything.  We get there and we were told that Madison can drink some Sprite or something that there was going to be a delay as Dr. Fletcher was in a middle of a very long surgery.  Come to find out, we were sent home.  Dr. Fletcher was performing a surgery on a five month old baby who had brain cancer and it was a very lengthy surgery.  All the hospital liaison people came and apologized.  Even Dr. Koenig apologized and said that had never happened to any of her muscle biopsies.  There was no need to apologize, as I would want other parents to be understanding if it was my child going under brain caner surgery.  The biopsy was reschedule for a couple weeks later.  I don't thing it was a very good outcome for that poor little five month old baby, but I never really hear the whole story.

Muscle biopsy comes back with abnormalities but again not gross abnormalities.  More blood is taken.  The blood comes come back that she has a mutation on gene 9660 which is a medical marvel (they haven't seen a mutation on that gene yet).  They then take blood on TJ and myself.  That comes back and all three of us mutated 9660 which confuses Dr. Koenig because TJ presents so different than Madison and even some the symptoms that I had described regarding myself. 

 Madison has her Lumbar Puncture and she is in recover and our nurse that looks like "Kathy Bates" saw that the anesthesiologist did not use the Mitochondrial Protocol.  We start to see a lot of people looking at the chart next thing the head anesthesiologist explained what happened.  They run labs and they see she is reacting to the Lactated Ringers, so we get to be admitted and be watched to be sure she is ok.  This is just a couple of days before the Mito Walk 2010.  Keep in mind Madison suffers from a chronic Migraine, so after the Lumbar Puncture and we are admitted to the floor because of the reaction to the Lactated Ringers it was a while before she gets up.  We go home and Madison started to realize she has another headache, the Post Lumbar Puncture headache.  We finally get admitted for the Post Lumbar Puncture headache.  They finally perform a Lumbar Patch.  That headache is instantly gone.  In the meantime, she missed the Mito Walk 2010, but TJ was able to wheel through it... That was our first Mito Walk..

 TJ's Lumbar Puncture, we learned that he is "Cerebral Folate Deficient". which can explain why he is so different than Madison.  So Madison is mutated on gene 9660 and has issues on complex 111, too many mitochondria, irregular shaped and too much fat in her mitochondria.  TJ we are working off of Madison's information at this time.