Thursday, May 2, 2013

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,


  1. Wow/ you guys have a LOT going on. I am sorry you are having to sell your dream home- I'm sure that's so hard. Hope and pray these new treatments for Trace make a big difference in his quality of life. Thank you for the prayers and encouragement this week- I thank God for my Mifo friends who get it!

  2. Whew! A lot going on! Way to rock that fork, Trace! :) I hope you guys get some peace about whether to do the VNS or not, sometimes decisions can be so tough! If you do it, I hope it makes a huge impact on his seizure activity!