Half the Energy, Twice the Spunk

Well it's been an odd week.

Brandon has refused to go to school all week. He insists his chest and throat hurt, though he's usually smiling happily when he tells us this.

On day 1 we thought he was just trying to weasel out of school so the deal was if he didnt go to school, he had to go to bed all day.

Anyone that knows Brandon, knows that laying in bed all day is NOT in his nature.

He chose bed. and stayed there. all day.
And all wedensday. And yesterday. and is back there today.

He is no longer there by a house rule, but is there by choice. He gets up, eats breakfast, signs 'bed' and head to his room.

He lies in bed watching movies, reading books, watching his ipod... he is COMPLETELY happy... even got a serious case of hte giggle last night...

he's napping in teh afternoons, sleeping alot at night...

He's beat.


We saw the pediatrician on Wed, he checked out 'ok' and they tested him for mono which was negative.
Yesterday we went back to the hospital for metabolic bloodwork as something is obviously just not right.
That bloodwork has almost all come back normal - were waiting on one last test, but i dont expect it to be abnormal.

At this point the theory is its a virus that just knocked the stuffing out of him.

We are all on edge of course, and hoping to get our boy back soon.

Brandon is struggling. He has stayed home from school this week because he insists his chest and throat hurt. When told 'if are too sick for school, you have to stay in bed all day' he happily goes to bed and stays there... all day long. 2 days in a row.
Something is clearly up.

We saw the doctor this afternoon who reassured us that he is not actively 'sick' sick... but the worry at this point is Mono. We're waiting on the bloodwork.

What a way to start off the summer.

On the up side, he is very happy... just very very tired.

Well we muddled through the worst of the virus last week and the boys are both on the up swing! (and with no hospital stay required to boot!)

Brandon came through this fabulously - we were pretty nervous as the last throat/fever type virus he had cause some pretty severe neurological issues/progression so we were all on edge over here - but he did just fine!

Yesterday was spent in the sunshine in the yard, fighting off mosquitos and june bugs... exactly what fathers day is supposed to be :)

Onward and upward!

K

Well we're still battling this virus. Brandon was hot again last night, and Tyler woke up hot and barfing with a sore throat.
I'm hoping I can get Tyler to keep down some motrin as I suspect once the fever comes down he will stop barfing - and we can avoid an IV.
His sugar is highish at the moment so thats good at least - better than low.

Brandon seems to be in good spirits this morning though so hopefully he has rounded the corner on this one.

Poor Tyler - it was his 'welcome to kindergarden' day today too - he LOVES wedensdays for this.

**sigh**

off to hit the coffee. hard.

Brandon is doing better this morning - after a long night of high fevers, he is a bit cooler today, and even ate and drank a bit this morning.
He is currently fighting with his brother over cars on the living room floor - I will take that as a good sign.

Breathing a tentative sigh of relief.

Brandon is sick.

High fever, and general crumminess.

First sunny day all week. :(

Hoping its a quick one.

I shared this on a support group/forum the other day with a mom who recently found out her son has mito... I've had a few folks suggest I post it on my blog - so here it is.

(Mom and Auntie Patti I suggest you guys skip this one - or grab your kleenex now...)


It is a strange thing to feel relief when your child is diagnosed with a terrible disease. But relief is indeed the emotion we had. We've seen both sides of the coin - the awful world of 'undiagnosed' - knowing something awful is wrong, and not having a clue what it was... and the awful world of 'mito'... still awful, but slightly less in my opinion.

Having a name for the monster does indeed help.

You're in for a roller coaster - as much as this ends one chapter of the journey, it also marks the beginning of a whole new one... not more or less terrible/scary... but different. You will now spend the coming months learning how to 'be ok' with the fact that things will get worse, and you will not know exactly 'what' is going to get worse until it does... the uncertainty does not get better, but it does get bearable.

You'll learn how to 'be ok' with discussing this horrible disease... you will reach a place where you can quite plainly explain that your child has this condition, and it will get worse, and there is really nothing that can be done (yet!) to stop it... people will be horrified that you can talk about it without being a total mess... (and I promise - with time, you will be able to talk about it without being a total mess!! it takes time, but you will get there).

you'll learn how to 'be ok' with the fact that your child's life (and yours!) is now going to be vastly different than most... and it's just that - not better, not worse, just very very different... you will find joy in things most people dont notice... you will lose sleep over things most people dont even think about... you will cry (both happy and sad tears) over things most people would never comprehend...

You don't know it yet, but your entire world, and everything you thought was important 'before' has been fundamentally changed. Nothing will ever be the same...

But I promise, with time, patience, and support - you and your family will get to a place where its 'ok'... you may not 'beat' mito, but you absolutely will grow from it, in ways you cant even imagine...

Big hugs...

Be kind to yourself... be patient with your spouse - he will likely process all this in a completely different, incompatable way than you, and it will upset you when he muddles through it differently - but its just that - different - no more or less right... allow him to get through it how he needs to, and ask him to allow you to get through it your way... The same goes for all your family...

Be prepared to lose friends. And be prepared to find amazing friends in old 'aquaintences' you never expected. Be prepared to be let down by people you believed would be there no matter what, and be ready to be surprised by the ones you didnt.

Learn how to ask for help - and do it specifically. Come up with a list of things that are difficult when things get bad (laundry, cooking, etc) and ask friends and family to help out in those areas when things are rough... People WANT to help, but they will always come to you and say 'what can i do' and at a crisis point you will not be able to tell them. So tell them ahead of time. Tell them when things are bad you really need someone to come clean the kitchen and throw some laundry in, or deliver a meal or two... help them help you.

These are all the things I wish someone had shared with me when we started this journey - we have had to learn them on the fly instead... we're getting there - but every year brings new challenges, new bombshells, and new lessons... and new joys, and achievements.


It will be 'ok'.

It will never be the same, but it will be 'ok'.

It has to be 'ok'.



As of tonight, we're 'ok'. Brandon had a fantastic day at school, Tyler is doing great, we had a wonderful evening full of loud thunderstorms and good food (waffle sandwitches for the boys - their favorite!)... life is good.

K

Today I'll let the pictures do the talking...










Life is good this weekend!

This morning dad got up and fed Tyler an oreo straw with milk.

Then he left to go fishing for the day.

Mom now has a seriously hopped up 5 year old on her hands.

Tyler + chocolate = insanity...

add in 7am and it's a bad bad mix.


It's all compounded by the fact that its cold and rainy outside - so I can't even kick them out into the yard!

Is it wrong to have wine at 10am?

Not much new to report today... which is wonderful.

Tyler spent the afternoon/evening incorporating the word 'rash' into his ongoing chatter...

"Now mom - let's not be rash about dinner"
"my dumptrucks name is 'rashy' because he makes rash decisions and does rash things"

Where, you ask, did the 5 year old pick this up?

All I can say is he had his once a week 'prekindergarden' class this afternoon.

Last week, when he came home from his 'prekindergarden' class, after dinner he announced that "Dad's garage is a dictatorship you know mom, and dad's tools are the dictators"....

I kid you not.

quite the prekindergarden class I say.....

stay tuned.

Well today wasnt unexpected.

I went in for my IVIG treatment, and cardio appt, knowing that things have progressively worsened the past few weeks. I've just felt lousier and lousier every few days.

Cardio took one look at my numbers (BP, heart rate, etc) and considers this a 'relapse' of the AAG.

I start the IVIG regimen on Day 1 today - high dose IVIG every day this week, followed by a more intense regular schedule after (probably every 10 days or so) until October.

It's goign to be a long week, and a long summer.

The good news is - we know whats wrong, we know how to fix it, and in a week I should start feeling noticably better.

Those are pretty big 'glass half full' things.


To set the tone for the day, I was just looking out my front window at my nice green lawn COMPLETLEY covered in dandilion 'puffs' (they have all gone to seed), thinking how gross it looked, and Tyler stood beside me and announced "wow mom, we have a whole yard full of 'wish blossoms'! Thats alot of wishes to come true!"

Thats my boy.