Tuesday, October 30, 2012

My Healthy Child

What's up with my healthy child?  At the beginning of October Peyton came to me with what she thought at the time were 3 bruises on her shin.  I joked and told her to try not to be such a klutz.  A week later she had these so called bruises up and down both legs and one arm.  She was experiencing pain when touched and swelling.  She had also been complaining of stomach cramping and feeling like she was going to pass out.  I felt this was some sort of inflammation of her glands or blood vessels - definitely not bruises or a rash.  I took her to the pediatrician the following morning.  He examined her and said he hasn't seen it in 30 years.  "It" turned out to be Polyarteritis Nodosa.  An autoimmune disease which causes inflammation of the arteries, among other things if not treated properly.  This didn't suprise me, or alarm me for that fact.  Honestly I laughed and said only the weirdest of the weird for my children!  He said "Well Laurie they are YOUR children."  Ha Ha doc!  He told me to give her ibuprofen and call back if she runs fever or vomits.  I took Peyton to lunch and did some research.  I didn't like what I read regarding long term effects of the disease.  There were also better treatment options.  Peyton has had some problems with use of ibuprofen in the past and taking as much as he prescribed can't be good for that.  I decided we need a second opinion.  I called Trace's immunologist and she referred me to rheumatology.  Peyton will be seeing the rheumatologist Dr. K, who works in the clinic with Trace's specialists.  I know this is the best place for her to be.  During my week of inpatiently waiting to see when Dr. K could fit Peyton in, I called the appointment line to see when his first available was. It was 1 year for new patients!  I guess Mito has it's perks!  Peyton's appointment is next week so we'll see what happens. 

On Friday, Trace's mito specialist attended our golf tournament benefit for the clinic.  I was able to show her Peyton's legs and arm.  She let me know that a lot of siblings of mito patients have autoimmune issues.  She also assured Peyton she doesn't have to worry all weekend because she doesn't have Mito :-).  I honestly think Peyton was a little relieved to hear that.  I don't blame her - what she has seen this disease do to her brother and other children would scare anyone.

So that's that - my healthy girl - not so healthy right now.  I have to give her some props though, she's one tough cookie.  She has continued to cheer & dance as much as her body allows.  She had to miss cheering at the game Friday due to the pain and swelling.  She has never missed cheering at a football game.  She's cheered through fever, flu, stomach ache, torn ligaments, you name it.  I know the only thing that got her through missing the game was being at her brother's golf tournament.  She didn't miss the pep rally though!  I love that crazy girl!!

Hope, Love, Courage &Faith,

Friday, October 5, 2012

Two Years

Today marks the 2nd anniversary of Trace's diagnosis with Mitochondrial Disease.  My heart aches today.  I've been trying to not think about it all week, but it's in my mind always.  I think about how horrible Mito is, how "lucky" Trace is, how that day played out, how blessed we are to still have him here with us, how awful I feel for the parents whose babies have grown their angel wings way too soon, what I can do to make these childrens lives better . . . 

I believe when you have a child with a disease like Mito you live the process of grieving over and over and over.  It never stops.  You're in denial, angry, sad and accepting.  It's so true for me.  I lived through this process so many times over the last two years.  I try to stay positive & accept this is just the way it is - the way it was meant to be for us.  I've learned it's best to live in that stage as much as possible.  But when I get hit with something new, for instance Trace starts experiencing a new type of seizure, I start it all over.  I can't help it, I try not to be sad or angry, but I guess I'm human after all.  There's been times within this last year that I've even thought "Does Trace really have Mito? Or is this some big mistake?" and then I answer myself "Really? Are you serious?".  I've even asked his mito specialist if she was sure of Trace's diagnosis.  She gave me a kind smile and reassured me he does in fact have Mito.   Lucky for me I have a wonderful support system of family and friends to help me go through this process of grieving over and over and over again.  Oh yeah, and a good therapist too :-)

This past year has been filled with much of the same as the year before - sleepless nights, tons of doctor appointments & therapy, hospitalizations, tests, dosing lots of meds, etc., etc.  But it's also been filled with Trace becoming way more verbal than he's ever been before, achieving some of his goals for speech & occupational therapy, making wonderful memories, lots of family time, eating at restaurants with Trace, snuggling, and best of all lots of hugs & kisses.  I feel Trace has come a long way in the last few months.  The first few were a bit unsteady with lots of regression from his illness and hospitalization in December.  Then everything seemed to level out and Trace has really thrived.  I'm so proud of my little boy to have come so far in such a short period of time.  He amazes me every single day.

What will this next year bring?  I don't know.  I do know that I will stay as positive as possible, enjoy every moment of every day & sleepless night, fight for Trace as hard as he fights, cherish every single skinny-armed hug and sweet kiss he gives, and even love the bad moments because although bad they are still moments we have together. 

Hope, Love, Courage &Faith,