Wednesday, February 22, 2012

More Trace Updates

Trace had two appointments last week - GI and Neuro.  Since his last hospitalization in December Trace has been doing very well on the GI front.  He's been eating, and eating and eating.  For those of you who know Trace, he has never eaten well and could care less about food.  He's been a little bottomless pit here lately though.  Eating like every two hours!  I've been thinking the last two months how wonderful it must be for Trace to actually enjoy food.  I know I sure do!  I noticed when being weighed at his last couple of appointments he did not gain weight.  Dr. N confirmed Tuesday that Trace has made no strides in the weight department despite his new eating habits.  Dr. N spoke briefly about his concern that Trace may not be properly absorbing the calories he intakes.  He seemed more concerned than usual, maybe because Trace is actually eating and the explosive diarrhea has taken a back seat for the time being.  He discussed yet another plan for Trace to gain.  I don't feel this new plan will work, but we'll try.  So we go back in two months to see if Trace has made any progress. 

Friday he had his appointment with his neurologist/epileptologist.  I knew this one wouldn't really bring any great news, just because of everything going on lately.  I let Dr. V know about the new absence seizures which Trace has been experiencing the last couple of months.  Dr. V explained that due to Trace's type of epilepsy it is common to  develop different types of seizures throughout his lifetime.  I also expressed my deep concern of his neurological prognosis.  Trace is at the developmental level of an 18-24 month old - he's 4.  He sees 2 speech therapists, 2 occupational therapists and 1 physical therapist and still no real progress has been made.  So after all the discussions were had, Dr. V decided to change one of his seizure medications and ordered a 23 hour EEG.  She is changing meds in hopes to see Trace develop better.  He is currently taking 3 seizure meds - Keppra, Topamax and Klonopin.  We will replace Klonopin with Onfi, monitor seizures for a month, and if it works we can try to remove the Topamax too.  She ordered the EEG to monitor how many epileptic discharges are happening in his brain.  A large amount of these discharges could also be a cause of the lack of development.  I really hope it's as simple as the meds.  Of course, neither of these could be the cause.  We may never know, we may never be able to fix it and I have to learn to be okay with that. 

Friday we also received the call scheduling his MRI.  It will take place this Friday, Feb 24th.  Trace will be put under general anesthesia for the MRI.  Please say a prayer for my little Mister so that all goes well for him Friday.

Some days I pray so hard for answers, to know exactly what Trace's future holds.  Some days I pray not to know, because I'm scared of what it may hold.  Some days I feel strong, like I'm winning this battle for my son.  And some days I just feel defeated.  This past week I felt defeat, but I know I will rise above that defeat.  All I need to do is remember how blessed I am to have been chosen as this sweet boys mother.   

Trace & Daddy playing a little football
at Chuck E. Cheese last weekend

Trace loves bubbles!!  What fun!!

Hope, Love, Courage &Faith,

Wednesday, February 8, 2012

Medical Update

Yesterday Trace had an appointment with his mito neurologist Dr. K.  We had a few changes to discuss since we saw her last - regression of physical capabilities, absence seizures and some other small stuff.  Dr. K had Trace walk up and down the hall to see how he was doing.  Trace just sort of shuffled his feet along, not exactly the best way to walk.  She was concerned about the regression and development of new seizures.  We are not sure at this point what could be causing these changes.  Dr. K ordered a MRI of the brain to see if it could tell us more.  I hope it doesn't.  Trace had an MRI about 3 years ago that was normal.  Dr. K said children who have a normal MRI usually never have to do another.  However, with Mito kids that's not the case.  He will be put under anesthesia for the test and I know he will do just fine.  Our little Mister is so strong and brave. 

This MRI scares me - not the test itself, but the things it could bring.  Things that have always been in the back of my mind.  Things I know are a very real possibility one day.  Things that are my worst fears for my son.  But for now I will tuck all those bad things to the back of my mind and enjoy life.   Live life to the fullest extent every day and don't hold anything back - yesterday that was about going to the park and seeing the joy on my childrens faces. 

Trace was a little reluctant at first

but then SisSis got him going

and going

then Trace decided he could tackle the stairs himself 

and even ride the big slide!  That's my brave little boy!

Hope, Love, Courage &Faith,

Monday, February 6, 2012

Energy for Life Walk 2012

Saturday was the Energy for Life Walk.  It started off raining, but the rain soon stopped and we were able to walk without umbrellas and ponchos.  Team Not Without A Trace was about 50 members strong and looked awesome in our camo shirts.  I'm really excited to report our team raised approximately $20,000 this year.  That is truly amazing!! 

After returning back to the park from the walk, the organizers had set up posters with photos of each teams child.  It was beautiful!  It really sent a flood of emotion over me to see my little Mister's beautiful picture among the bravest children in the world.  Some of these children have already lost their battle with Mito, I know these angels were dancing in heaven above, parting the clouds just long enough. 

Trace & Hudson patiently waiting

A few of our team members

Lining up to start the walk

This picture of Trace & Hudson is hilarious - they really are two of kind!

My warrior among the bravest

Trace decided he was going to dance after the walk - too cute!

And this smile is the reason we do everything
we can to fight this terrible disease

I would like to thank everyone who drove to Houston, braved the rain, raised awareness and raised funds to support our sweet Trace.  You are a very special group of people who make our lives better!  We love you all ~

Hope, Love, Courage &Faith,