Halloween!

Today I'm in a better mood.  Not quite as angry.  Somehow blogging helps me clear my head and remember what's important, which is staying focused on Noah and being positive. 

Sometimes I just need a blogger meltdown to get me to the "right" head space.

Tonight we are sitting here doing the same 'ol same 'ol (feeds and spitting up with a seizure in between).  There are kids (well, GERMS with costumes on disguising their H1N1 viruses) coming to our porch to find a big bowl of candy and a sign: "Sorry we missed you.  Happy Halloween.  Please just take one! :)"  I'm such a chicken and I'm doing my best to keep Noah healthy this cold and flu season!

So here are a few pics of Noah and Daddy all dressed up...

Noah is "Tom Brady-cardia" (He used to drop his heart rate to the 40 and 50s beats per minute when we were in the NICU which caused many many alarms to go crazy (and his mom went a little nuts too!)).  Next year I think he'll be "Seizure" Salad.  Have a Happy Halloween!  

The ramblings of an atypical mom loving an atypical son

There's a difference, I think, between loving a "typical" child and and "atypical" child.  Not saying I love my baby any more but the love is different.  I think we (mom's of special babies) have to love our children through a life in a world that isn't quite ready to deal with their differences.  I wasn't sure that motherhood was my calling.  I didn't think I'd be good at it (I'm selfish and set in my ways).  But I'm learning.  Noah's a pretty good teacher.

Some people are uncomfortable talking about Noah (sometimes I think it'd be helpful to take a class:  Doctor Speak 101 or Nerves of Steal 460) or seeing him suffer.  It's tough, I know that.  I watch it all day long.  Watch him suffer and squirm through seizures.  I watch him cry and howl and I try to hold him as tightly as I can to comfort him but it doesn't help really.  He just looks terrified.  His eyes get so big and he screams.  It's awful.  

Now I understand why his arms and legs get so stiff and won't bend.  Duh!  Cerebral Palsy.   I thought maybe he didn't want to change his clothes, do PT, or be held.  Now I know it's totally involuntary and he just may be as frustrated as I about the whole thing.  So if he's not seizing he's battling his muscles for control of which he pretty much has none. 

I'm angry today.  I'm angry that I allowed Noah to get vaccinated.  I'm angry that I allowed a surgeon to operate on Noah and he lost so much blood it caused irreparable brain damage.  

As I go through the stages of grief (I do mourn for the loss of a life I had planned for Noah; a great life full of "typical" things and "typical" dreams), I think I'm stuck on a few.

Grief Limbo.  

I'm somewhere between denial ("you never know, things could still turn out okay"), anger("why us?  it's not fair to punish such an innocent soul!"), and bargaining ("maybe if we can just start that treatment, everything will turn out okay.").  

But today (and yesterday) I'm just angry.

  

Blogging from the road...

This is a long one so pull up a chair, grab a glass of your favorite something, and get ready.

Loved Dr Chugani (aka Dr Rockstar)!  

The hospital was nice.  The nurses were great and patient with Noah's helicopter mom. Overall, we had a pleasant experience.  Noah probably doesn't agree but he hung in there like a champ.  He didn't sleep well or eat well (SURPRISED?) but now that he's back in his carseat, he's sleeping away despite what's going on in his brain.  

I can't read EEGs but I do recognize chaos when I see it and his is very chaotic.  Poor little guy doesn't ever really get a break from massive electrical activity (confirmed by Dr V).  

So, what can we do?

Since Noah's EEG is such a mess they can't really see the area of origination of the seizures with absolute certainty.  So Dr. C would like Noah's EEG to mature (clean 'er up a little bit).  His suggestion was to start the keto diet and if that doesn't help then a round of ACTH.  So, not exactly what we'd hoped (I really wanted to go straight to the OR and get on with it) but it's not a "No".  There was a spot on the PET Scan that indicated an area where the seizures start but he wants the EEG to support that to make sure that's THE one and there aren't more.  

Looks as if some of Noah's brain cells didn't quite make it to their destination and started a little party a little south of where they should have which caused him to develop seizures.

Next, and this is what I didn't expect, Noah got a diagnosis of Choreoathetoid Cerebral Palsy.   Say that three times really fast!  Argh!  Cause:  Noah's second surgery (removed the tumor from his spinal canal) caused a lot of blood loss.  He actually got 2 Units of blood in the OR and two more in the NICU later that day.  When that happened he sustained brain damage.   His basal ganglia and thalamus don't metabolize sugar like they should, but it's a gross motor/muscle issue.  Good news, his cerebral cortex showed pretty good metabolism, so there's cognitive potential there (if we stop seizures).  

So our little man has been hit with a double WHAMMY!  We got the "your son is an interesting case", again.  

We did hear from Dr L and he said we were FINALLY cleared for the keto diet (starts on Nov 9th) and we get to start weaning another med.  So it's not all bad news!

We are tired and worried and... I could go on and on with adjectives, but you get the picture.  So, I'll post more as I remember and as I process a ton of information through my exhausted brain!

Thank you so much for the prayers and support.  :)  

Let's Not Get Too Ahead of Ourselves...

I'm trying to remain calm and remember that it's not in my hands but I'm having a lot of difficulty with that.  

We are on our way to Detroit tomorrow night (it's about a 7 hour drive but for us add a couple of more to that).   Sunday we'll begin with a VEEG (it's a 24 hour EEG with video) and we'll stay in the hospital.  On Monday morning we go downstairs for a PET Scan then off to the International House for the night.  Tuesday morning we have an appointment with Dr Rockstar and then back home.  

This is it!  I'm so scared, excited, nervous, anxious, happy.  I'm trying not to get my hopes too high but that's impossible.  Well, impossible until you read so many stories about kids who have seizures, went to see Dr Rockstar, and were told they weren't candidates for surgery.  

Now when I read those stories I cry.  I want this surgery so much for Noah.  I feel like it's his only hope to have any quality of life.  

Bottom line:  The seizures have to STOP.  Meds don't work.  We aren't sure about the diet (even that isn't a long term solution most of the time).  What's left?  Surgery.  

Please keep Noah in your prayers.  We'll let you know what we find out.  Good or bad.  

Thank you all for your support and love you send our way.  

Could I borrow your Patience?

Okay, a few things are going on but everything is still UP IN THE AIR!

Preliminary results from genetics test: Noah doesn't have the most common type of CPT1 deficiency but we are to be cautious about large deletions  (I'm GUESSING chromosome deletions, but I'm not sure about this one).  Dr L is asking Metabolism for guidance.  

What does this mean?

We still aren't cleared for keto diet.

Don't know if there is a metabolic disorder.

Haven't been able to schedule surgery to "fix" reflux because we've decided that "No diet, No surgery".

Keto diet starts Nov 11th (man, is that coming up quickly!?).

We've been in contact with Dr Rockstar and his extremely helpful and nice Nurse S.   We've sent them insurance info, history, etc.  

What does this mean?

We are waiting for approval for a PET Scan from our insurance (please pray we get approved!).

As soon as we are approved we will go next week and visit with Dr Rockstar, have a 24 hour video EEG, and a PET Scan.

They review test results and determine if Noah is a surgical candidate (please pray he is!).

We've had a really rough couple of days.  Seizures have been fast and furious and very distressing for poor Noah.  It's torture to watch; I can't even imagine what it's like to endure. We are just really hoping we can help him and get him some relief.  

Other front tooth is rearing it's little head too!  Teeth=seizures for us.  Argh!

  

No new news...

so I thought I'd post some current-ish pictures.  

Little Update

So...

We are waiting for results to come back from the lab.  Guess it takes a while since they are doing some special ninja genetic work up to further investigate the potential metabolic disorder that is suspect.  

We met with the surgeon.  I really liked him.  He assured me if we don't use the G-tube we can just pull it and let the hole close up (kind of like an earring hole).  Weird!  But love that it's not a permanent fixture unless ABSOLUTELY necessary.  I like when they fool me into thinking I have some say in the whole ordeal.  Do they offer a special class in med school for that? 

I've emailed the brain surgeon in Michigan (Dr Rockstar).  He PROMPTLY emailed me back saying he'd be happy to see Noah and to run some presurgical tests.  He left an email and a name of a woman who will work with us to set everything up.  Hopefully this delay in the keto diet is a God send and will give us time to do the tests before we start (since we can't do them while on the diet).  

I'm trying my best to just let things happen without trying to "force" them.  I have to remind myself that things happen for a reason and happen just like they are supposed to (whether I like it or not!).  

So, that's about all.  We've started Phenobarbital too.  Hopefully it'll help alleviate some of these awful seizures until we can get a more definitive treatment for our little guy.

Go Patriots!  Since Noah will be "Tom Brady-cardia" for Halloween this year.  Love it! 

We do follow some blogs. You can check them out on the left side of our page.  Very strong people and their little ones who are on this IS journey too.  Please keep Trevor and his family in your prayers.  He just had brain surgery to remove his seizure monster.  And poor little Kendall is back in the hospital.  Please pray she gets better soon.  And as always, Noah can always use some "shout-outs" to the Big Guy.  Thanks and God Bless!

I am just a big ol' baby!

I don't have schizophrenia.   Somedays you must think I do though.  Ups and downs... that's our life.  An emotional roller coaster to put the most death defying coaster to shame a thousand times over.  Hiking a fourteener and being scared of heights, that was nothing.  This journey with our Mr. Noah... well, my heart skips many beats per day, breaks on a regular basis, and is running over with love for my son, family, and friends.  

In my last post I was being so foolish over silly things.  Some people have a hard time talking to me about their lives.  They think that somehow in comparison their problems are small when put next to mine.  This is down right silly!  My or your problem, emotion, or feeling is as important as the next person's.  We aren't having a competition.  But, I too, have those same feelings sometimes.  Like I have no right to complain.  

While I struggle with something as trivial as a G-tube and was brought to tears by the thought of not being able to feed my baby,  someone else had their child diagnosed with a mitochondrial disorder that carries with it a 2-3 year life expectancy once there is an onset of symptoms.

Putting my self in check NOW!

I have my son and so far no one has told me he has a fatal disease (knock on wood and a quick "thanks" to the Big Guy in the Sky).  If reflux and a G-tube is our biggest issue (well, that and this awful epilepsy, developmental delays, yada yada yada...), we are doing pretty good.  It could always be worse.  

I had to reflect back on some photos too just to remind myself to be grateful.  (If you are squeamish don't continue) you won't miss much but a few more ramblings from a crazy lady!  

But I'm going to share with  you what a BIG surgery looks like (big to us anyway).  

This warranted tears and worry.  And Noah made it.  He recovered and he fought his way though three of these!  He'll continue to fight and recover, God willing.  

He's strong.  

Not like his big ol' baby Mom!

     

Has anyone seen my umbrella?

When it rains, it pours.  

Maybe it wasn't a coincidence Noah was born on Hurricane Katrina's anniversary.

Well, I don't want to post but I will.  

I'm sad.  I'm angry.  I'm confused.  I'm furious.

Noah had some blood work done about two weeks ago.  Just routine to make sure there wasn't anything weird going on with him before we start the ketogenic diet.  No biggie, right?  Well, there were a couple of things that raised some questions.  Mainly he had a "high carnitine" result.  This could be indicative of a metabolic disorder.  They don't think that's the case but it seems if he does have a metabolic disorder, the ketogenic diet would be a BIG no-no. 

So we have to go back and do some more "digging".  Mainly retesting to see if it was a false positive and there will be a genetic work-up to check genetics.  

BIG HITCH in our seemingly simple diet plans! 

Now Metabolism is involved and they have to clear us for the diet (which is supposed to start Oct 12th).

While all of that is seriously bugging me and I'm freaked and worried about it, there is another thing.... a BIG thing for me.  

Noah came home from the hospital with a feeding tube.  I HATED it.  Something so very very unnatural about not being able to feed your baby.  We busted our tails to get rid of that thing. Seriously, MANY MANY tears over that freaking thing.  Hated it!  We did get rid of it.  In January.  It was a tough road but we've managed to keep it gone and as hard as it is to feed Noah, I wouldn't trade it for the world.

Noah has really bad reflux.  He's on two meds for it and it really doesn't help but we deal.  He spits up and I start the feed over.  Our doc wants us to have a surgery to "fix" his reflux before we start the diet.  It would keep him from ever spitting up but at the same time requires a feeding tube which goes directly in his stomach.  It's called a G-tube.  We have done everything in our power to avoid this procedure.   Now it is directly in our faces.  It stands between us and the keto diet (if we are cleared by Metabolism).  

So, do we have the surgery or not?  This is a question Todd and I don't have an answer to.  We are struggling so hard with this.  Another surgery?  Argh!  A G-tube? Over my dead body! Feeding Noah is the only "normal" thing we get to do with him.  To lose that would just break my heart?  Are the risks outweighing the benefits?  Will Noah EVER get to be just a typical kid?

We don't know.

We have a surgical consult tomorrow morning and we are having the blood work done as well.

Wish us luck!