The Good, the Bad and the Yipee!

So our year started out with a lot of tests and appointments, what's new right?  Simon had a follow-up sleep study and EEG.  The sleep study proved to be great news, he has some quirks but all in all a good study.  Now his ability to go to sleep and stay to sleep has been a problem, well, forever; so we have started him on a more aggresive sleep aid.  He is going to sleep better, staying asleep is still questionable but we're only a few days in.

Official seizure diagnosis, Atypical Absence Epilepsy.  That's another name for Simon doesn't like to do things the expected way.  His seizures are longer and have a few quirks different from what a typical petit mal seizure looks like.  Generally they last 10 seconds or less, Simon's last anywhere from typical to well over a minute.  His longest, as people who know us may remember, was about 12 horrifying minutes. His medication has been increased and we're seeing some improvement, still kind of watching right now.

The yipee?!  NO MORE OXYGEN! The equipment is being returned  today! 

What is funny about going to sleep at a good time and no more oxygen is my weird reaction.  Its funny how used to being tense you are that you just don't know how to relax.  I've wanted that oxygen gone for so long and now that its leaving I feel a little apprehensive, as if we're not prepared.  We have lived Simon's life with so many surprises I've really become someone who has tried to outthink his body and be ahead of the game.  Dare I relax?  Everytime I have something has blindsided us from behind and to the left LOL, but you know what; I'm going to give it a shot.  I gave up as much control as I could muster to our Heavenly Father a long time ago, I think he gets that I have a hard time letting go of the control; so I hope he gives me some kudos for at least trying to be grateful and relax a little.

MERRY CHRISTMAS!

Yep, it's Christmas time.  I'm starting to feel it a bit, but its tough to enjoy this time of the year when you know that starting the first of next year a Simon marathon will begin.  We're hoping for answers, solutions, something but along this journey I think we've learned to not hold our breath.  He's a quirky little guy and his body works a little different, it is what it is.  But alas we have to try, we never stop trying to give him every tool possible to help him be the best he can be and be in the best health he can be. 

Christmas presents for him have taken a different approach from us this year.  He's getting the fun stuff from grand parents, from us he's getting a cool dinosaur humidifier.  Still very kid cool but also practical.  Sometimes I think we try so hard to treat our SN kids like everyone else that we miss the mark a little bit of accepting them as they are and embracing what some of those differences are.  He could care less about most toys.  A humidifier will be a big boost to his oxygen challenges, i.e. keeping his nose from getting irritated from the cannuals.  I think treating him like a kid is great, but I think its also important to remember to accept him just as he is and if he would love a card for Christmas, then get him a card, why spend $50 on a toy he won't play with?  We're all different, different things bring us pleasure so if we want to be honest the stress we have over how much we spend on someone when instead a truly thoughtful gift would do the job and bring you and the person receiving the gift from you; why strive for anything else? 

Those are my random thoughts.  Take them for what you will. Merry Christmas!

Simon's Hands

I have started a new blog to showcase the paintings Simon and I are creating together.

http://simonshands.blogspot.com/

And Life Goes On...

Well, I did it.  I signed up for the Ogden Marathon.  Eek!  I found out I have a heart arryhthmia(sp), hypoglycemia and low blood pressure a few weeks ago and my ECHO is the 9th but I knew this marathon would sell out if I didn't sign up so I just went for it.  I imagine I should have everything sorted out by then and worse case will just have to not run it.  That I just don't see needing to happen though so I'm optimistic, excited and nervous!  Its a beautiful run though, Dave and I drove the course Sunday. 

My cute Simon has gained 4lbs!  I have to call the nutritionist and see if we need to reduce some of his calories.  Man oh man!  He's heavy and tall.  We've been very informally exploring growth attuneation(sp) as a possibility for him.  I probably better make the appointment to discussing it fully with an endo soon. 

Did you know hearing aids are crazy expensive and if you're born with a hearing loss insurance won't pay for it; except Medicaid, which we don't get sooooo; Simon won't be hearing for awhile until we get that sorted out.....

How is this for random thoughts?  We're still in limbo on all of Simon's stuff until the sleep study.   Our lives are me, running and Dave music and both of us as much sleep as we can fit in! 

The boys are living life day to day and nothing terribly new going on except we will have another driver in our home here in a few weeks....

Simon's Halloween costume was a hit.  I'll have to figure out how to include a picture.  Its sad that I don't know. LOL

Emergency Prepare

If you do food storage or just prepare in general there is a great giveaway!

http://beprepared.com/article.asp_Q_ai_E_1092&sid%3DINEM1084&EID%3DALL0811b&lm%3Demer

New Loop Officially Thrown....

So our cute boy decided he still doesn't like to breathe at night and even at times while he's awake.  So after his tough surgery at the beginning of the year and the steps to control his reflux we're right back where we started from.  He will be on night time oxygen and he will have a new sleep study (that we pushed to January for financial reasons, with Dr approval of course), new scopes and possible pulmonary testing. 

I've been a bit spent and exhausted today.  In exploring my reasons, when it could really be worse; I think its like this:  you do things thinking they will make something better.  You start living life like things are good.  Then something like this shows you not only is it not but somehow you missed the signs that they weren't.  How can you miss it?  So its like you really try to push yourself into denial because you just don't want to believe it and you think there must be some mistake and yet you are still making the phone calls and making the plans to find out what is wrong, yet its this surreal process of going through the motions but really just wanting your life and the life of your child to be "normal".  To just not worry about this, to live in blissful ignorance.  To just live.  Sometimes that is my greatest wish of all, to just be. 

Truly we've had a good few months run really, fairly uneventful; so I really just need to appreciate that.  But for today and maybe tomorrow I'm going to induldge my emotion as it stands and then just pick up and move forward.  Enjoy the 4 months we have before we have to worry about any tests or further intervention and just be.......

More Simon is Getting Healthier News-Sort of

I spoke to Simon's ENT nurse today because we were supposed to do a follow-up oximeter(sp) a few months ago but the scope and GI stuff made me forget about it.  So we will have that done sometime this week and *crossing fingers* we can return his oxygen concentrator.  He's been sleeping pretty great most nights, he still has moments but overall much better.  Most of his sleep apnea is Central so oxygen really won't do much if his brain forgets to breathe, but he's been sleeping pretty well so hopefully the obstructive portion of the sleep apnea is resolved enough that his dips are more mild and we can just get rid of one more piece of equipment.  Woo hoo!