Am I Really THAT Strong?

Am I Really THAT Strong?? The answer is Yes and No I guess.  Some days I wake up and feel I can take on anything.  Some days I wish I could stay in bed and miraculously it will all get better.  I can say the Yes happens way more than the No.  I wish I could say I am strong all the time, but I’m just not.  I fight hard.  I love even harder.  I appreciate every day.  I take nothing for granted.  I can adapt to change.  My faith is strong.  I am a Mother Warrior.

I am weak.  I am vulnerable.  I do cry.  I do scream.  I’m tired.  I do feel anger.  I do feel resentment.  I am not perfect.  I never will be perfect.  I love with a love so strong that I’m not sure anyone else has ever felt.  I am blessed.  I’m lonely.  I’m happy.  I’m grateful.  I’m real.  Writing all of this down makes me feel good. 

This is all still so new to me.  How can it be new, because it’s so old?  I feel I’m not supposed to feel any more feelings about everything that’s happened in my life because it’s been too long.  I shouldn’t, couldn’t, still possibly feel the same feelings.  Why do I?  Am I weak?  It will never be okay, it will never go away. 

I’m sad.  So very sad.  No matter how long ago I heard the words Mitochondrial Disease they won’t go away. The words There Is No Cure, There is No Treatment still echo in my mind every day.  I have tried so hard to beat it – but it keeps winning.  Why can’t I win? I’m scared.   

I’m angry.  I feel guilt because of my anger.  Why do I feel guilty for feeling angry?  It makes me feel terrible that I feel anger.  I should never let anger get in the way of happiness.  So I try not to let it overcome happiness.   I try.  I focus on happiness and joy.  I focus on love.  On hope.  I focus on the courage to fight each day with a smile on my face.  I have faith to help me through all of this.

I’m tired.  So very tired.  But not near as tired as he is.  His little body fights so hard every day just to be here.  I can’t be tired, I won’t.  He fights so hard.   How can I complain that he hasn’t let me sleep one single night in the last five years?  He hasn’t slept one single night in the last five years either.  It has to be so much harder for him.  I can’t be tired.  I’m so happy he’s still here with me to wake me up and feed him during the night.

I want to fix him.  I can’t.  It's the worse feeling.  The sick truth – Mito will most likely take my sons life.  A crash could happen at any time that he may not be able to bounce back from.  Mito will be the reason my son leaves me to be with Him.  That’s something no parent wants to hear.  It has made me view life entirely in a new way.  A better, more appreciative way. I never knew children who died before.  I never thought of it happening to me.  It’s the worst thing anyone could ever experience.  I’m not saying losing a loved one is easy, it’s just horrific to lose your own child.  I’ve seen too many little ones get their angel wings way too soon.  Mito is life changing for the better and for the worse.   

I try to be as proactive as I can when he is ill.  It’s the only thing I can do to help him, but is it enough?  Sometimes I wonder if I’m being too proactive, to the point I feel crazy.  Should I take him to the hospital, should I not??  I pack a bag, I wait, and then we always end up going.  When I get there I realize I shouldn’t have waited.  I should have had him there sooner.  If I did maybe his stay wouldn’t have been so long.  I blame myself.  Always, everytime.  A simple thing as vomiting twice in 4 hours can dehydrate my child for 23 hours.  I wish I could give fluids at home to keep him out of the hospital.  Who says that?  What is sane or even close to normal about that?  Nothing.  I have another child who vomited for 2 days straight and never even got close to being in the hospital.  Her body can fight back.  My son is there every single time he gets the smallest illness.  I have to face the reality it is the best place for him.  No matter how many sticks he has to endure.  It’s worth it in the end to help him get better.  He can’t get better on his own.  He has to have help and it’s my job to make sure he gets it.  I know I can make it through his tears, his screams.  Because at the end of it all, he looks at me and I see how much love he has for me.  He always hugs me.  I am his mom and I just helped him feel better at his worse.  It’s truly rewarding, even in the worse of circumstances.

He fights for his life. Every day he should receive a gold medal for dealing with “his normal”.  Every child with Mito should.  Every special needs child should.  Life should be fun.  His fun is so different.  But he does have fun.  He has accomplished so many things I really didn’t think would be possible when he was diagnosed.  He gives me hope.  His smile lights up my world.  His life is hard, but he just doesn’t seem to let it get him down.  He is an example of extreme joy.  I am here to make every single day the best I can for him.  No matter what.  No matter how hard it is.  No matter how many doses of meds he fights, no matter how abnormal it really is. No matter how much he cries.  No matter how hard I cry.  I will make it the best I can.

I pray.  I have faith.  I believe in the power of prayer.  I believe God chose this life for our family.  I have to.  It helps me make sense of all of this craziness.  I don’t blame God, I don’t blame myself.  At least not anymore.  Yes, I’m guilty of asking God why he would do this to my child, to anyone’s child.  I have felt guilt that I had to have done something wrong to cause this horrible disease for my child.  I didn’t do anything.  God knew Trace could handle this. He knew his strength before he was born.  He created him.  He put him here for a much bigger purpose than playing baseball, running, talking or any other normal child things. I’m not downplaying those things.  They are wonderful.  I have a child without special needs.  I push Peyton to excel in everything she has ever done.  I will never stop being proud of all of her accomplishments.  Peyton is just as special to me as Trace.  Just as loved.  I am so blessed to be her mother.  I have received the greatest of gifts.  I am a mother to a special child and a special needs child. 

It’s not easy.  Nothing as amazing and rewarding as being a mother should be though.  I am not your typical mother, I am a Mother Warrior.  I will fight until the end. 

Happy Mother's Day to all Mother Warriors.

 

Hope, Love, Courage &Faith,

Laurie

Catching My Breath

There have been so many changes happen in our family the last couple of months.  I'm still trying to catch my breath.  Change is good - well most of it is good. 

We have decided to sell our home.  This decision wasn't an easy one.  I live in my dream home - I designed it and my father built it.  It is on a tranquil few acres and I have loved every minute of living in our home.  Unfortunately all of our plans we had for our future when we built this home have changed.  Our children were going to enjoy the country life.  Playing sports outside, fishing and building hideouts in the woods.  Only Peyton has truly been able to experience those things and now I guess she's too old to build hideouts anymore.  Trace's mito doesn't allow him to enjoy being outside but for very short periods.  Thomas' job is 3 hours away and he is only here a few days a month.  Peyton will be leaving for college after next year.  I don't want Trace and I to be all the way out here alone.  It's so lonely sometimes.  Trace is in bed by 6:30 and that makes for a long evening all by myself when Peyton is at friends or dance.  I can't image that everyday - I'm just not that type of person.  So we are moving closer to family and friends. 

I was laid off from my job of 17 years in March.  This was sort of a surprise, but I sort of knew it could be coming too.  I had a really hard time with not having a job at first.  I felt inadequate and worthless.  Like I couldn't provide for my family.  I have now decided it wasn't such a bad thing after all.  I'm not really sure how I worked full time, managed Trace's care and all the other regular mom and homemaker duties.  Guess that's why I was so forgetful, to the point of embarrassment sometimes.  I have decided to take this time and really focus on Trace's care and have volunteered to help with the UMDF.  It has really been a blessing.  There's a reason for everything and this was just part of a bigger plan.  Loving my time with my little Mister!

We found out last week that Trace has immune deficiency.  He can't and hasn't been able to fight an infection without being admitted to the hospital.  As Dr. P said to me "he's so lucky he has not had a severe infection such as pneumonia".  I do feel so lucky in that aspect.  However, it's still a big let down.  Dr. P doesn't know why his labs were good in November, but had non-existenet titers this month.  She expressed her concern and we chose to do another pneumovax shot to try and get them up.  He had one over a year ago and it should of lastest longer - like 5 years.  Nothing goes as it should when Mito is in the picture though.  He did good with the shot and we're hoping to see improvement with it.  If not IVIG is another option to keep him healthy.

We met with the pediatric neurologist Dr. S last week to discuss placing a Vagus Nerve Stimulator (VNS) in Trace.  He said Trace is a good candidate.  Trace's seizures do not just affect one part of his brain.  If that was the case he could remove that part and Trace could be seizure free.  Since Trace is taking 7 doses of 3 seizure medications per day and is still seeing seizure progression this is our best option.  He also told us Trace was not too small.  He said he can place the device under his pectoral muscle so that it doesn't protrude too much from his body and bother him.  This was a concern of Dr. K's due to Trace's severe OCD.  We were told to have a contingency plan in case Trace completly flips out and was constantly tugging on it. Dr. S told us there are no guarantees with VNS - it can greatly improve seizure activity, improve it slightly or not at all.  I would be so grateful for even the slightest improvement.   

We are still discussing VNS with Dr. P and Dr. K.  They have both expressed concern with infection.  Due to what we found out last week, we are waiting to see if the pneumovax brings up his titer levels.  Dr. P and Dr. K have sort of approved, pending the new labs.  Dr. P will run either IVIG or IV antibiotics during the procedure to help prevent any infection.  We meet with his epileptologist Dr. V in 3 weeks to discuss everything further with her. 

Some other things going on - Peyton was a mentor at Special Olympics.  I'm so proud of her for volunteering her time for others.  It was a weekend event starting with a send off parade at school, dinner and dance that evening and events the next day.  She said it was so fun.  Her student was a beautiful sweet girl.  Peyton said she could relate to her easily because she was a lot like Trace.  Loves the IPad, movies and had some of the same issues.  Peyton was requested by the girls parents to be her mentor again next year.  Proud mommy moment!

Another proud mommy moment - Trace has began to use a fork to feed himself.  Trace doesn't like eating and only eats certain foods.  He doesn't self feed much yet and only uses his fingers.  He doesn't eat at the table much either.  He may be 5 years old and this usually happens when children are about 2.  It doesn't make it any less spectacular though.  It's all about the little things right?  Maybe we can try to potty train this summer??  This is an amazing achievement for my little Mister! 

We also attended the UMDF Family Day at Morgan's Wonderland a couple of weekends ago.  It was so much fun as usual and we met lots of new families.  Trace had an amazing time but was so tired by noon.  So we went on one last train ride before leaving.  Here are some pictures! 

I'd like to ask you to pray for some of our Mito friends.  They are very sick and have been in the hospital this week.  Please pray for them to quickly get better and be able to return home to their families.  It breaks my heart to see these children in so much pain, they already go through too much.  Thank you!

Hope, Love, Courage &Faith,

Laurie

Hospital Stay

It's been over a month since I've written anything.  I have so much to say I could write for hours.  But unfortunately I don't have hours.  The purpose of this post is solely to journal Trace's latest illness and hospitalization.  I could easily forget important details (as shocking as that may sound!!) if I don't get it down before something else happens. 

 

Friday 04/05/13 Trace did not want to eat dinner.  This is not unusal for Trace, especially since he was experiencing a lot of gas.  I didn't think much of it.  I went about our evening routine and got him ready for bed at 6:00 PM.  He had a wet diaper at that time.  I put him to bed at 6:30.  He woke up about 7:30 and drank about 4 oz of water.  Throughout the night he woke a couple of times for a few sips of water.  He did not eat during the night, which he usually will do about 12:00 - 3:00 AM.

 

Saturday 04/06/13 Trace woke about 6:00 AM and seemed in a happy mood.  I was tending to the dogs and making meds in the kitchen when I heard him fall in the living room.  He had an atonic seizure and feel and hit the left side of his face on the wood floor.  I picked him up, consoled him and he was postictal for about 30 minutes.  At 6:30 AM he vomited.  At 7:00 AM he drank part of his mito cocktail.  He would not drink but 6 sips of juice after 7:00 AM.  I noticed he had not wet his diaper yet.  He always has a wet diaper within 15 minutes of waking.  With the seizure and vomit I guess the diaper wasn't high on the priority list.  Since he had no urine output, refused to drink anything and vomited I decided it was time to take him to the ER.  I got us all packed in case we had to stay but hoped we didn't.

 

Saturday Afternoon - I put Trace in the car around 12:00.  He drank about 3-4 oz of juice about 30 minutes into the drive and immediately vomited it up.  I had to pull over and clean him, change him, and clean the carseat the best I could with baby wipes on the side of the road.  Not so fun.  I just kept thinking please God don't let me get this if it's a virus.  I don't want to be sick with Trace in the hospital.  Been there, done that, miserable.  We arrived at CMHH and were immediately sent back.  Did the usual stuff, metabolic labs, IV fluids, etc.  All labs looked good with the exception of ammonia (high).  Trace still had no urine output and a bolus was ordered and administered in 30 minutes.  He finally had a wet diaper about 30 minutes later.  It had been a total of 22 1/2 hours since he last urinated!  Crazy for my child who blows up an overnight diaper about every 2 hours!!  We were told Dr. K wanted us to stay overnight to run fluids and watch him. 

 

Sunday 04/07/13 Trace did well overnight and had a wet diaper.  He continued the good trend and we were sent home late Sunday afternoon. 

 

I have kept him home from school this week due to his immune system being down.  He did attend private therapy on Tuesday, but was very low energy and didn't get much accomplished.  He had an appointment with Dr. P on Wednesday.  That will be a whole other post. 

 

I hope I can find some time soon to post about Easter, a couple of big doctor appointments, and all the other new things going on in the Wehring family.  Oh, and maybe even include some pictures - but I have to download them first! So for now this is it :-) 

 

Thanks for all of your prayers for my little Mister!

 

 

Hope, Love, Courage &Faith,

Laurie

 

Changes

Since his illness at the end of January, Trace has had some changes.  He has experienced some atonic seizures, more absence seizures and longer postictal states.  All of these things are probably due to the illness, but didn't get much better after the illness.  It does take Trace a while to get back to his baseline after an illness.  These are some pretty big changes in my eyes and they needed to be addressed sooner rather than later.  Being proactive is our best and only defense against Mito.  So we had an appointment with his epileptologist on 19 Feb 2013.  Dr. V said the changes are most likely due to the illness.  The immediate plan is to increase his AM dose of Onfi.  If the atonic seizures continue, we have the option to remove him from Topamax and put him on a new med designed specifically for atonic seizures.  Messing with seizure medications is always complicated and changing medications can often cause seizures to worsen rather than get better.  The other option, which has been brought up to us before, is Vagus Nerve Stimulation (VNS).  It's an option we are seriously considering now. 

Reason 1 - Trace will most likely never be seizure free on medication alone.  He's had seizures for 4 years now.  And I can honestly say he's never been seizure free.  That is and has always been our ultimate goal. 

Reason 2 - Trace is taking 7 doses of seizure medications per day.  Simply put - that's a lot.  He is on the max dose of two.  The third medication we just upped the AM dose.  We are seeing behavioral and sleep issues since adjusting the medication.  This has happened before with this medication.  If they continue, we will have to decrease the dosage back to where it was before.  We seem to play this yo-yo game a lot.  I really can't imagine adding any more seizure medications.

Reason 3 - The less seizure activity Trace has the better his development gets.  We have seen this happen in the past where we have added or adjusted a med and all of a sudden the "fog lifts" and we get to see more of our boy.  The more seizures, the greater risk of regression. 

There are a lot of other reasons, but these are the top three.  VNS Therapy involves a minimally invasive procedure. Trace's mito specialist, epileptologist and a pedi neurosurgeon will all be working together for his procedure.  VNS is not brain surgery.  The VNS has minimal side effects and the procedure is completely reversible. 

We have time to think about what will be the best decision for Trace.  Dr. V will not schedule the surgery until the summer.  The risk of infection due to all the illness at this time of year is too great for Trace.  So in the meantime we have some thinking to do, prayers to say and will hold on to the hope he will miraculously be seizure free!

Hope, Love, Courage &Faith,

Laurie

Trace Update

Here's the update on everything from Trace's stay at CMHH and the past few days.  Sunday, Jan 27, Trace seemed a little run down, had a slight cough and chest congestion.  Seemed to be the same illness he had just recovered from in December.  He spiked a fever Sunday evening about 6:30.  Ran fever all through the night, despite ibuprofen.  Monday AM I called the pediatrician and set up an appointment for that afternoon thinking it could be handled like the last illness.  Trace seemed to be going downhill really fast by late morning.  By 10:01 AM I emailed the Mito Clinic nurse and asked what Dr. K thinks.  At 10:07 AM she responded with ER Now!!  The 6 minutes in between those 2 emails were one of the scariest moments of my life with Trace.  And I have to say I don't scare easily anymore.  I was already getting things together for the ER, as I figured they would send me there due to the fact I couldn't get the fever down and it seemed to keep creeping higher.  I stood Trace beside me to grab some things from the bathroom cabinet, when he collapsed and had a terrible tonic clonic seizure.  I was able to catch him before he hit the ground, his entire body convulsed the worse I've seen in years.  Once it stopped he was unable to hold up his head, stand or even open his eyes for more than 2 seconds.  This postictal state lasted almost 2 hours.  Not exactly a fun drive to CMHH. 

Only Trace can rock the mis-matched jams this well!

I arrived at the ER, which was ready for us as Dr. K let them know we were on our way.  I guess you could call that a "perk" of mito.  No waiting in the ER.  Next they drew labs, started IV fluids, and all the other normal stuff that happens to my little guy in the ER.  Keeping him from having to go through all that is the reason we try to keep him home despite how ugly things get.  His Daddy arrived at 4:00 - Trace and I were both very happy to see him.  Trace because Daddy brought the motherload of movies & candy and me because he brought food.  I hadn't had a bite until then, let's just say that cafeteria sandwich was the best ever :-)  We finally were moved up to a room about 5:00.  They had to reset Trace's IV - poor sweet baby.  This was the 4th time he was stuck of 7.  His poor hands are still so bruised.  Around 6:00 Trace spiked another fever and had another tonic clonic seizure where he was postical for a long period of time again. 

Smiling despite everything going on in his little body

The next 3 days were long and frustrating.  Trace's labs never grew anything pointing to a bacterial infection, however he was treated with antibiotics.  His fevers would come and go.  He developed a rash.  Wouldn't eat and drink properly.  Continued with seizures, but they got better over the course of our stay.  I was never so happy to hear we were going home. 

Practicing his basketball skills

My sweet angel

He did well at home until Monday.  He had several absense & atonic (drop attack) seizures Monday AM.  Trace has not experienced atonic seizures before this illness.  I really hope they don't continue.  He already has myoclonic, absence, and tonic clonic seizures.  We have been told that over the course of Trace's life he will develop different types of seizures and they could become worse.  I really hope and pray that the atonic seizures are just something from the illness and nothing that's going to hang around.  They are dangerous and Trace could really hurt himself. 

Thanks to everyone who prayed for Trace during the past couple of weeks!

Thanks to all the doctors, nurses and friends who cared for Trace!

Thanks to my brother for delivering the best dinner and games!

Thanks for all of your continued prayers for my Mister!

Peyton dancing with Trace on the patio Saturday night - Pure LOVE!!

Hope, Love, Courage &Faith,

Laurie

New Wheels, New Braces, New Bed

The last couple of weeks have been filled with new things for Trace.  A few months ago we decided that it was necessary to get Trace a medical stroller. His feet were dragging the ground and head well above the head rest in his baby stroller.  He must have a stroller to ride in as he does not have the energy to walk distances.  I held off as long as I could in hopes that he would become stronger and able to walk better distances.  Well that miracle didn't happen.  Trace is weak, extremely loose jointed and has no ability to walk distances without tiring out completely.  There's no way he could make it during a day at the clinic or even through WalMart without being held.  He's 5 years old, 32 lbs and 42" tall, then add the 25 lb diaper bag including meds, diapers, wipes, extra clothing, juice cups, etc.  Too much for me to carry.  The medical stroller arrived last Friday.  I know it will be better for Trace and is customized to his personal needs.  BUT it's heavy!  It does break down and I can lift it into the car that way, but wow.  I try not to put too much focus on what the future holds, but this one made me think a little.  How in the world will I do this if needed when he's 10?  I'm still going to pray for the miracle he strenghtens and is able to get himself around!  In the mean time, guess I better start lifting some weights :-) 

Monday Trace received new ground reactive ankle foot orthotics (AFOs).  He has worn AFOs before, but these are a different type of brace.  He couldn't even take one step in them the first day.  But my resilient little Mister was doing much better by the second day.  And the third even better yet.  These were another thing I didn't want Trace to deal with again - but that's not what matters.  What matters is how he can possibly learn to walk properly and not cause any more problems for the future.  Dr. Y feels these are very necessary for Trace.  I trust Dr. Y, he's never steered us wrong, and listens to my Dr. Mom opinions as well.  So I willingly gave these a try in hopes they'll make a difference for the better for my little guy. 

Yesterday we received Trace's sleep safe bed.  I would have loved for him to be able to sleep safely in the bunk beds that were in his room.  But the fact is that's not going to happen any time soon.  So out with the bunk beds and in with the sleep safe bed.  Trace will be sleeping in his bedroom from here on out.  This is a hard one for me.  Trace has slept in his crib in my room since birth.  There are several reasons for it.  He stills wakes several times a night, easier for me to be right there.  He has seizures, wears oxygen and uses a pulse oximeter, easier for me to be right there.  We'll see how this goes.  I know it's best for Trace.  It's more of a "normal" thing to be in his own room.  Mommy will probably be sad though.

I never wanted my son to have any of these new things.  But it's not about me now is it :-)  It's about what's best for Trace, what makes his life easier and what's necessary.  I feel he's fortunate to have these new things.  They will make his life better.  It's just another change in our lives.  It's all about moving along with the change and making the best of it.  I think so far I've learned to embrace the changes life has given me and make the best of the worst.  Sometimes it may take me a little longer, but eventually I catch up.  I'll get here too and it'll all become normal in the blink of an eye.  Just our new normal.

Hope, Love, Courage &Faith,

Laurie

Happy Birthday Trace!! & Thomas!!

My baby is 5, I can't believe it!  This past year has probably been his best so far.  He's worked so hard this year which has lead to some great developmental progress.  Thank you to all Trace's therapists and teachers for never giving up on my baby and challenging him every week.  His health has been at an all time best this year too.  Thanks to his wonderful doctors and nurses who make sure he's receiving the best care and treatment possible.  Trace has managed to stay out of the hospital and healthy for the longest streak ever.  This is most exciting!!  It has really given me hope.  I live everyday of my life to make his better and seeing it finally get better is AMAZING!

We celebrated his birthday this weekend with lots of friends and family at Chuck E. Cheese.  Trace loves CEC!  This was by far the best birthday ever - he interacted with CEC, played lots of games, opened presents, ate some pizza and for the first time ever blew out his own birthday candle!!  If you can't tell I'm super excited about that and think I even yelled it out with excitement that day.  It's all about the little things right?? 

We also took family photos this weekend with Stephanie k Photography.  We were unable to do them last year because Trace was admitted to the hospital and I never rescheduled as it took him a while to totally recover.  Despite Trace not being very cooperative, constantly moving, and our family being the traveling circus it is, I have some truly amazing photos.  Stephanie is one talented photographer!  Her love for photography really shines in her work.  In her words - there are the funny moments and the serious moments and the sweet moments and they are all real and they are all a story about your family.  A huge THANK YOU!! to Stephanie k Photography for giving us these beautiful pictures which will tell our story forever.  And for her generosity in donating her fees to help fight Mitochondrial Disease.  Thank you again sweet friend!

After family photos we headed out to the christmas tree farm.  We decided we would start this new tradition for our family.  I'm happy we did because it was a lot of fun!  Trace loved the hayride and helped daddy cut down the tree.  Well he helped by rubbing dirt in Daddy's hair as he was cutting the tree.  I thought it was funny, Daddy did too, well probably not as much as I did :-) 

As far as Trace's December 13th, he spent it getting casted and fitted for ground reaction ankle foot orthotics.  Not something I want for him.  We've tried AFOs before and they were really hard for Trace to walk in and caused him to fall down a lot.  I hope he does better this time and they don't hinder his ability to get around.  It took him 5 years to get himself around good and I don't want to see him struggle.  His orthopedic doc is proud of how he has compensated for all of his disabilities, but feels he really needs the ground reactive AFOs.  Regardless of all the AFO stuff I was able to spend the day with sweet baby.  Happy Birthday Mister! 

Since Thomas was lucky enough to receive the best birthday gift ever 5 years ago, he doesn't get much attention anymore on December 13th.  So here are birthday wishes for my sweet husband, best friend and the best Daddy ever - HAPPY BIRTHDAY THOMAS!!  Wishing we could spend it together, but I'll see you soon my love. 

Hope, Love, Courage &Faith,

Laurie