Reality Check

As upbeat as I try to be (I know it's not obvious to most of you but I do have my moments and I do put my game face on in person) there's always something lurking in the back of my mind.  

It's a reality I don't let myself quite grasp.

At the forefront of this affliction that has incapacitated my son is the obvious:

He doesn't develop.  He seizes a lot.  He's not well and he's not "right".  

It's not good.

But you (as a parent) don't let yourself actually realize how not good this whole ordeal really is. It isn't until someone else posts a blog and you follow the link because you are simply curious.  You want to read about other families that have to endure all of this so you don't feel so alone in this fight.  

So I did.  I followed the link.  I read the article.  

And I got a reality check.

Eeyore is my favorite...Tigger is just too happy!

Okay, I know what a downer this blog normally is and trust me I dislike it as much as you do, but I told you at the beginning I wasn't going to sugarcoat any of this and I don't.

But it does get old to always post negative things.

So, here is a happy-er post.

I am sure right after I publish this things will go sideways again and I'm getting SO far ahead of myself it's ridiculous (that's the Eeyore in me talking), but I need this as much as you do.

Noah is AWESOME (but you already knew that).

Today has been a day with minor spit ups and ONLY 2 seizures (mind you the day isn't over yet but HOLY COW!).

That's it.  Now just waiting for that other shoe.....  ::wink::

Rejuvenated

I love skype.  It's truly amazing how just SEEING the people you love so much can give you strength to fight another day.  And that's exactly what we'll do.  Keep fighting and praying things get better.  

To my fellow skypers:

I love you and loved every minute of our visits.  Thank you from the bottom of my heart.

Merry Christmas

PS:  Santa skipped our house this year.  Guess we were all on the "naughty" list.  %$!&*#

All I want for Christmas...

Dear Santa,

I've been very good this year (well, pretty good).  I've tried my best to be a good mother, wife, and friend.  I'm not asking much, Santa.  I just need you to help my little boy.  He's having a terrible time eating right now.  He isn't eating enough and I'm afraid for him.  The doctors think he needs surgery to fix it.  I think he needs a Christmas miracle. Please help us, Santa.  I'll never ask for anything ever again.  Please help Noah. Please let him eat and keep it down.  Please help him grow big and strong and not need another surgery. Please, Santa.  

Love,

Tricia

Exhausted...

I sit here staring at Noah.  He's in his bean bag chair Memaw and Pops got him.  It's like watching the timer on a bomb ticking away.  Which bomb is going to go off this time? Will it be a seizure?  Will it be yet another spit up?  Or my favorite, BOTH.  Either way I'm terrified to touch him.  I just watch in anticipation.  I don't dare move him.  If I do I will, without a doubt,  either start a seizure or cause him to throw up.  Nice, huh?  I can't even hold my own child.  

Once we got to take Noah's feeding tube out I swore I'd never complain about feeding him.  All I wanted for so long was to get rid of that f'n thing and feed my child like a normal mom.  Once again, God threw me a nice "gotcha!".  EVERY time I feed Noah he throws up.  I hate feeding him.  It's awful.  It's awful for him and for me.  I dread, with every fiber of my being, feedings.  And believe me, there are many.  I'm trying to cut back the volume in hopes he will be able to keep a smaller amount down so, in turn, I have to feed him more often (I was already feeding him 7 times a day).  So now it's 10.  All I do is feed him, wait a few minutes, clean up the feed from my bed (as he most definitely threw it all up), change his clothes, my clothes, find Hanna (she always runs and hides now), and make another feed.  

Oh, and I count seizures.  

That is my day.  

Can't I just sleep through all of this and wake up when it gets better? 

Will it EVER get better?

It's not looking very likely.

Truth be told...

I know I can't keep using "cop out" posts forever but I'm having a hard time putting it all out there.  

Honestly, things have really been sucking lately.

Noah is spitting up like never before and is having seizures like he's making up for lost time.  It's awful.  I actually didn't get out of pj's or brush my hair for about 5 days (which really really bugs me).  Leaving Noah even for 5 minutes just wasn't an option.  Thankfully I did get a shower (had a therapist coming over and didn't want to run her off!); I just finally had to risk it.  Risk it, you ask?  Well, Noah has about a 20 minute grace period between a feed and a seizure which promptly turns into spitting up his entire feed and then we start the cycle over again. I usually use those minutes to grab another cup of coffee and wash bottles and prepare the next feed/med.  We have been existing in our one room and at times it's feeling a little like house arrest.  I know how Martha Stewart must have felt.  I've had my hands full and laundry is out of control.  

Side note: I love my friends who often tell me they wish they were closer so they could help with things like laundry.  Trust me ladies, that is the last thing you would do for me right now, no matter how much I begged.  Our basement, where the washer and dryer live, is infested with bats.  Our lovely cat is picking them off one by one and bringing them upstairs to our kitchen, ALIVE.  So, I have a GOOD excuse to let the laundry slide.   It's yet another issue we will eventually have to deal with but I just don't want to!  Blame me? 

All I can say right now is thank goodness for wine. ::smile::

Holland

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

 

I got this from a blog of a very special mother.  It pretty much sums it up, don't you think?  

"Holland" has been very cloudy, rainy, and cold this past week.  We are hoping the sun shines again soon.

Thrush and stuff...

We are treating Noah for thrush and maybe, just maybe, that's why he's having more seizures.  Seriously, he's having seizures every hour for 20+ minutes and I'm stressing out.  Guess antibiotics can decrease absorption of seizure meds and hopefully that's the culprit.  If not... well, I don't even want to think about that right now.  Tomorrow is the last day we are giving the medicine and I'm hoping we can get Noah back.  He's less responsive, less verbal, and a seizing maniac. Keeping fingers crossed...

On a better note:

My older nephew has an "A" in Chemistry and Algebra II!  Brainiac!

My niece is a hockey star!  Love it!

My new nephew is home and doing really well.  Mom and Dad are adjusting beautifully!

My parents drove 24 straight hours and made it home safely.  Geez!  

Rockstars!  All of 'em.

So proud of my fam!

That's all folks!

Rugs being yanked and other feet dropping...

Well, I got a taste of the good life, but it was fleeting.  

Noah is back to spitting up like crazy and having seizures regularly.  It's enough to make me want to curl up in a ball and hide.  It's so much harder to deal when I get a glimpse of an almost normal life and then it's ripped away.

It's almost like God is laughing at us.  Teasing us.  

"Here, let me show you a bit of happiness, fewer seizures, and a baby who eats well.  Poof!  I'm taking it away!"  Ha ha ha!

I'm not seeing his sense of humor apparently.  I'm taking it very personally and obviously I'm in a bad head space.

I thought things were going to get better and actually stay that way.  I was sorely mistaken.  

My parents have left which also doesn't help my attitude.  It was amazing to have them here and painful to watch them leave.  

In the past week two families have lost a child.  Both are weighing very heavily on my heart.  I have feared losing my child since our 20 week ultrasound, through three major surgeries, and a seizure disorder. Losing Noah is always in the back of my mind.  So when I hear about someone else losing their child I have to wonder what makes me so special that I get to keep mine, hug him, love him, and kiss him for another day?

And knowing all of this makes it harder to deal with my feelings. I have such guilt.  I should appreciate what I have (I know this).  I may have a spitting up, seizing baby who doesn't respond to me but at least I have my baby.  And I AM grateful for Noah, that he's healthy (in the cold and flu season sense), and my family.  I really am, but I want more. 

I'm sick of "at least" always being in my sentences.  I'm sick of people looking at my life and appreciating theirs MORE.  

I just want my son to get better and it's not happening.  

T-giving Photos

I've been a bad bad blogger...

I've been trying to make myself blog lately but just haven't been feelin' it.  Can't quite explain it but basically I just haven't been in the mood.  It takes energy to put yourself out there and relive emotions and moments you've already been through and frankly sometimes I just don't wanna.

But here's the CliffNotes:

My parents are here (total God send!).

Noah was sick for about 5 days (yes, the "bubble" was penetrated and a "bug" got to my poor poor baby).

Noah is still having seizures.

We had a delicious and very mellow Thanksgiving.

We are on our way to CHOP on Wednesday for a follow up.

We are anxiously awaiting our nephew's arrival on the 2nd! 

Noah's IS friend Connor is going to see Dr C soon and we are so hoping he can help them.

Good luck to Trevor (and Mommy) on his upcoming 48 hour EEG.   

And that's about it.  I've been going through a whirlwind of emotions but am just not in a place where I want/feel like sharing.  I'm sure that will change soon enough and I'll get to a true update.  

Deep Breaths...

I am such an instant gratification kind of a girl.  Patience is not my virtue (what I do have is devoted to my little man and thankfully that supply is endless when it comes to him).  All I have to do is take a deep breath and look into those baby blues and I'm overwhelmed with love and a sense of purpose.  It doesn't always happen quite as quickly as I'd like (that sense of calm and refocus).  There have been times when a mini (okay, who am I kidding?  more like gigantic) tantrum had to be thrown in the closet (so happy I have a huge closet) before I could regroup. I'm not proud of my temper but I am human and sometimes it gets to be a little much.  

So this diet can take up to three months to work (if it's going to). That's a long time to anticipate, worry, wait, and hope.  It's also a long time to keep hopes high only to be disappointed and be sent back to square one.  

I'm still seeing seizures.  No instant fix here!

But I will report that these past couple of days have been atypical.  By that I mean taking care of Noah has been a breeze.  There's a little more paperwork involved but overall it's been strangely calm around here.  It's almost unnerving.  I'm, of course, waiting for the other shoe to drop 'cause it seems like it always does.   I have been a little more relaxed and found myself to actually be a little happy.  Feeds have gone down a little faster and I haven't seen as many coming right back up to taunt me and drive me insane.  Also, he cried yesterday and today.  Normally he doesn't cry at all(most wouldn't complain about this but it's VERY unnatural to have a child who doesn't cry).  Now I just have to figure out what he wants!  Passive baby no more?Opinionated baby?  Maybe...  Wouldn't that be nice?  Possibly a personality coming through the seizure haze?

This is a long one!

Well, it was interesting to say the least.  I'm going to ramble on and on.  I apologize but I think it's important to document all of this journey.  I want to be able to have some leverage when Noah is older and doesn't want to clean his room or unload the dishwasher.  "Well your other choice is to read the blog and see what your mom went through to make sure you were okay..."  :)  I figure he'll go clean his room.  

The Queen of Keto was amazing.  She was caring, empathetic, knowledgeable, and very experienced with the whole process.  I couldn't have stayed sane without her.  She offered words of encouragement, listened to all of my concerns, made me feel better every time she came in our room, and even brought me a sandwich she made from home.   I cannot say enough good about her.  

I was extremely high maintenance and I'm sure they were ready to get rid of me.  

Throughout this process they have education classes which happen twice a day for 1 1/2 to 2 hours each.  I requested a one-on-one "sitter" for Noah since he has so many seizures and often they make him spit up and someone needs to watch him all the time.  They (the nurses) thought they would just take him to the playroom with the other kids once I left the room.  

I don't think so!  

If you know me at all you know I keep Noah very isolated from germs with arms and legs.  We don't go in public and we definitely don't go around other children.  Queen of Keto understood this and gave me private classes in her off time so I could stay with Noah and he could stay in the room.  (I told you she was amazing and I was high maintenance!)

Noah took to the formula pretty well and his spit-ups weren't nearly as bad as they are at home.  That was SO nice.  

He did have some blood acid/base balancing issues.  He was becoming more on the acidic side which concerned the docs and extended our stay for an additional night.  Thankfully we got it somewhat worked out and they let us leave.  I think they just wanted me outta there!  

There was a negotiation between me and the doctors about meds that went on for about 24 hours.  I found out what a "Yes" person I am NOT.  If they had it their way Noah would have a tube in his nose going directly to his stomach and would be getting 40 mLs of extra fluid volume a day which he CANNOT tolerate and in the end he would be spitting up ALL the time.  

Geez!  What's a girl gotta do to get someone to listen?  

The poor nurse said she felt like a middle man since she kept coming to me telling me what the docs wanted and I would refuse and send her back with a counteroffer.  It was awful and very frustrating.  Again, thanks to the Queen of Keto for listening to me and finding other meds which Noah tolerates just fine.  

 

Then there was the discussion I got into with a resident who admittedly said she wasn't sure what was going on since she was just covering.  Noah's acid levels weren't getting any better and she wanted to decrease his diet ratio to fix it (I had talked to the Attending Physician and already knew what the plan should be if his levels didn't get better and this wasn't it).  The ratio is important to get the full therapeutic effects of the diet.  Going lower may not yield the same results as a higher ratio.  This obviously worried me since we are so desperate for seizure control  She wouldn't listen to me or even negotiate.  So I asked to talk to someone else (ie: someone above her in the "doctor food chain").  It was late on Friday night and no one else was available.  I was on the phone to Todd crying and hollering to him about how frustrated I was getting.  Thankfully the nutrition people who make the formula messed up and didn't make the adjustment so we ended up staying on the same ratio.  Divine intervention.  The next morning the whole mess was cleared up by the keto team doctors (they did exactly what I told the other doctor they were going to do).  

Sometimes I just wish they would listen to the parents!  But I don't have cool initials after my name like MD so my opinion goes in one ear and out the other.  

Good times, Good times...NOT!

Overall, Noah hung in there, once again, like a true champ.  He complained very little and he was such an easy baby to care for (he always is).  Very mellow and laid back (although it's drug induced).  He has to get his blood sugar tested twice a day (yes, I have to prick his little toes with a needle) but he tolerates it very well.  We carefully measure all of his formula and water and patiently wait for the diet to kick in and erase the seizures from his cute little brain.  Too soon to tell if it's working but our hopes are high.  

That's it!  We're home and hopeful!  

Comments about comments

I am so grateful today.  When I read the comments you post on our blog my heart gets so filled up with gratitude.  You have no idea how good it makes me feel knowing we aren't going through this alone, that you too love Noah and want him to get better, and that you are always in our corner rooting for us. Thank you so much for hanging in there and being there for us through this journey.  

I've been thinking about how this all began.  I started looking at pictures and videos. Goodness, I cannot believe how far we've come.

Some of you have been with us since day one and some of you have recently joined us. Either way I thought maybe you'd enjoy this little clip from a year ago when they aired our story on NBC in Philadelphia...

http://www.nbcphiladelphia.com/news/health/Saving_Baby_Noah_Philadelphia.html

I cannot believe how small Noah was or what a blubbering mess I was!  It seems so surreal.  

Last year November was such a great month for us.  After 3 months we finally got to take our son home and start a life together.  

Here's hoping this November brings us another great beginning. The coming of a new Seizure FREE life together.  

Since Todd and I will be arm wrestling for the computer I imagine it will stay at home with him.  I probably won't get a chance to update next week but I'll be journaling "old school" and promise to catch you all up on the latest when we get home.  

Please keep Noah in your prayers and keep fingers crossed this diet helps!  

Have a great week!

Monday, Monday...

Monday cannot come fast enough for us.  

C'mon KETO Diet!  It has to work, right?  It at least has to help!

The seizures are coming fast and more furious than normal and I'm about to go CRAZY! I'm not sure if I've ever posted actual numbers but when Noah was hooked up to the VEEG they saw 31 seizures in that 24 hour period.  I usually count about 15-20 (These are clusters.  I'm not counting the actual individual seizures) a day but I do sleep on occasion so I miss some.  I tried to count individual seizures one day and a single spasm cluster got up to 49 and I just couldn't keep up.  He needed me to comfort him more than I needed to count.   

We are increasing his Phenobarbital and hopefully that will get us to the diet and Noah will get some relief!  

Mama is getting desperate!

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!

Little did I know...

I know it's been a while but it's tough saying the same thing over and over.  I don't want to be the chronic complainer but honestly what you read is pretty par for the course.  

I have had an interesting thought, however.

I've decided the dating I did in my 20's prepared me for motherhood.

Little did I know that I would be in the same situation I swore time and time again I'd never be in.  You know those guys we dated that were always so elusive.  The more we gave and clung, the further they pulled away and the worse they treated us.  We were always doing nice stuff for them and buying little presents so they'd know just how much we cared and how often we thought about them. 

Basically running them off! 

Well, if Noah were in his 30's I'd break up with him.  I swear I give and give and he just takes and takes. (okay, who are we kidding?  He'd break up with me because I'm "too needy" and a total doormat.  Have you seen those baby blues?)

You have to know I'm really laughing on the inside about my little comparison.  Too clever for my own good I tell you!  :)  I have to find humor where I can sometimes. 

Back to an actual update which is why you have tuned in anyway.

Noah has been having really bad seizures lately.  They make him howl (not sure if he's in pain or just terrified) and come fast and are wicked.  We've had to resort to using rescue valum a couple of times (it's scary to use because it makes him SO comatose). I've talked to our doc and we've increased one of his meds hoping it will curb this behavior STAT!  

I'm experimenting with feeds (always) to find what will work for him.  Some days I just throw up (no pun intended) my arms and just hope he's getting enough.  I'm tired of always being upset about it and poor Hanna just tucks tail and runs out of the room the second he starts coughing.  (He's got the whole family on high alert!)  

So, some things are a little better and some things are a little worse.  

We go to CHOP on Monday to meet with the Keto Team to make sure we are still go for October 14th.  :)  

As always, please keep Noah in your thoughts and prayers.  

...but mine's broken!

So you ask how much can one person complain? 

Enough already!  

That's the nice thing about a blog.  It's pretty one sided.  No one to say "buck up! It could be worse"  (well, not out loud anyway).                                                                                                      

Buyer beware! 

No puppies or rainbows here today.

I have this new fear.  Like I really needed another.  But I fear I've become this mother who can't see the truth about her child.  That parent we all make faces behind their backs after they've told you how "gifted" their child is or how "talented" they are. 

Yeah right you idiot!  Go on believing that one and I'll show you that pot of gold at the end of the next rainbow and those jeans don't make your butt look fat!

(I tried to warn you)

You have to understand that Noah isn't getting better.  It's breaking my ever loving heart. There's no sign of recognition, grabbing of fingers or toys, smiling, cooing, reaching, rolling (or even a pathetic attempt).  There's nothing.  Just a blank stare.  A painful, horrifying, alarming, unemotional blank stare.  God what I'd give for just a hint that he was in there.  I think I see it occasionally but I'm beginning to think I want it so badly I make it up in my head.   

So, I've become THAT parent.  Who so stupidly believes that one day I'm going to wake up to a child that finally shows a sign of love.  A sign that he's processing something. Anything.  But as the days and nights go by I have to wonder if it's ever going to happen.  Will he ever know me?  Will he ever know how much I love him?  

I try to believe I love enough for the both of us and someday it'll click.  

Yesterday was just tough.  Noah doesn't want to eat (he eats but he can't keep it down).  He actually spit up 10 oz yesterday!  Argh!  (He only gets 24 1/2 oz per day)  He had a few seizures that just went on and on and on.  I had the rescue valum out and was so close to using it.  Such a judgement call...I hate it.  So between changing my clothes, his clothes, and bed clothes multiple times I tried to clean up a little.   Somedays it's just futile to even try to do anything else but count seizures, feed and re-feed that little boy!  AND he needs a bath! Didn't get to that either. 

Here's hoping today is easier for him.  

Happy Birthday to Daddy!

Hope all my LC friends are enjoying the wine fest!  Wish I was there with you...

"Ya take the good, ya take the bad, ya take them both...

There should be musical notes coming off my computer as the "Facts of Life" theme song plays in my head.  

I should be really excited.  I should be jumping up and down.  But you have to realize what happens today may not happen again for a long long time.  

So, here's the news:

Today Noah ate. Really ate.  

A whole Tbsp. of cereal and his formula.  

I'm wowed!  This is a big deal for us!

But I feel nervous and this is why:

We had Noah's yearly evaluation for Early Intervention today.  They assess him and determine how delayed he is.  As we are answering questions about his behavior, I'm realizing  there are things Noah did that he doesn't do anymore.  He used to hold up his head, push up when on his belly, cry, and smile.  He doesn't really do any of that anymore.  So, I guess I'm a little less excitable than I used to be because who knows if it'll last.  

Sheer pessimism!  

Seizures will do that to a girl (or a boy).  It's been a bad day of seizures.  Lots of long ones.

Many causing tears and cries I cannot console no matter what I do.  It's painful to watch.

Yes folks, today the glass is half empty.  

We'll hope tomorrow the glass is full!  :)

Do I punch you or hug you?

That is a question I asked Noah's surgeon yesterday.  

We followed his advice and that is why we are where we are today.  This man told me if my baby was important to me I'd move to Philly and if not, the baby wouldn't survive. When he said this to me a little over a year ago I was devastated.  Then I got mad.  Then I got determined.  Then we moved.  We moved to PA two days later.  Hell yes! this baby was/is the most important thing in my life (and his father's life but this is MY blog not Todd's)!  

We love Noah's surgeon.  He saved Noah's life.  He also thinks we are pretty amazing which is hard for me to wrap my brain around.  This man is a fetal surgeon, chief of surgery, THE man.  He thinks I'm amazing??  He is also funny and kind.  And he gave me a new found strength without even knowing it.  

I realized Noah doesn't get to see the best of me and Todd.  We were at our best in Colorado when we met.  Footloose and fancy free!  We were happy and unattached and  life was pretty easy.  Living the dream in the mountains, hanging out with friends, working hard and playing harder.   Ahhh, the good ol' days. 

It's not fair to Noah.  He needs to see us laugh, smile, play, and love.  Not stress, cry, and struggle.  I want Noah to know us the way we used to be.  I think he'd like it.  I think he'd like us.  

My new promise to Noah:  He gets the best of me.  He gets to see me take heartbreak, frustration, and fear with grace.  He gets to see me laugh and smile.  He gets to see me be nicer to daddy and watch us love each other more.  This journey occasionally makes us forget how we got here and what brought us together.  It's not an easy road but we need to remember.  It's time we become a family who is happier more often than sad.  He deserves that (Noah and daddy!).  So do I.   

Two steps back...

I remember thinking the NICU was torture.  88 days, 87 nights.

The doctors coming by each morning to "judge" the progress of my baby.  Deciding which support to keep, take away, what new meds to try, decide if he's gaining weight adequately  (Oh, the pressure to gain weight!).  Watching Noah in an isolette and asking permission to touch him or hold him.  Watching him hooked up to monitors, IVs coming off his feet and hands, tubes in his nose and mouth, and surgery after surgery.  Always checking with someone else before I changed his diaper.  Always on someone else's schedule with baths.  As a matter of fact we were always on someone else's schedule for everything!  

I couldn't wait to get him home and not have an audience.  I was going to pick him up whenever I wanted, play with him, cuddle him, and feed him on OUR SCHEDULE.  

We are home and for that I am eternally grateful.  

Looking back I never thought the NICU would be the easy part.

I just thought it'd get easier when we got home.  It's not really.  I can't grab Noah anytime and play with him or cuddle him.  When you pick him up you either cause a seizure or cause him to spit-up.  (Noah doesn't just spit-up like regular kids.  Noah SPITS-UP!)

Noah eats about 3 1/2 oz per feed.  Noah spits up about 3 oz every time I feed him.  When this happens I have to rush and go get more formula and try again.  If I manage to get the feed in him I have to be very careful not to move him for at least 15 minutes after he finishes.  Then, ever so carefully, I put him down.  See, he needs to lay very still for about an hour after that.  Noah also eats every 2 1/2 hours, which doesn't leave very much room for much else.  

So you pick him up and he doesn't lose his meal.  Now you have to worry about the seizure you just caused.  Often when I move him or try to play with him it'll cause a seizure.  Watching my kid have a seizure anywhere from 2 minutes to 1 hour IS torture.  Absolute torture for both of us.  It makes him cry, jerk uncontrollably, and then when you think it's finally finished, he spits-up.  WTF!  

I know I'm being a drama queen.  Home is a MILLION times better than the NICU.  I just had a different picture in my head of how our life would be once we left.  It was a cute little life with a sweet baby being cared for by his very grateful mother and watched over by his sweet little black dog.  His dad would go to a job he loved and come home to a house full of love and smiles. PT and OT would come over to help him catch up and thrive.  He would eat great and get so big.  It was a life without the constant struggle....  

The life we have is just not the way I pictured it and I have to let it go.  It's just not that easy to let go.....

It was such a nice picture.

Reinforcements are coming!

 Tomorrow Todd flies to KS to meet up with Memaw and bring her to me!!!  I haven't seen my parents since June.  They haven't seen Noah since his seizures started.  Boy are they in for a surprise.  I don't think you can appreciate just how rotten this is until you see it first hand.  

As for Noah...

Reflux is back with a vengeance!  

Still seizing. 

Ouch!

Well we heard back from Dr L.  He seems to think Noah would be an unlikely candidate for surgery since he has many (yes, I said many) sites of injury on his brain.  

I must have missed that interpretation of his brain MRI.  I know I'd remember "many sites of injury".  How could I have missed that? Ask anyone who knows me.  I don't miss things like that.  I keep a journal of every seizure and what it looks like.  I keep track of every milliliter that goes into his mouth and even the milliliters that come back up.  I am so meticulous about record keeping.  How did I miss that? Did I intentionally block out that sentence because it is so horrible? 

 Because there is more than one site causing seizures, its removal may give rise to other places starting.  In a nutshell, I'm devastated.  So much for a day without tears.  

I'm afraid to ask...

One of the hardest things about this whole situation is knowing if you are doing the right thing.  There's a fine line between too aggressive and not aggressive enough in this instance.  There's been a question on my mind I was afraid to ask but today I asked.  The question:  Should we start thinking about the surgery option?  Two things worry me here (only two?  who am I kidding? Two BIG concerns).  One is that Noah wouldn't be a candidate for surgery.  Yes, I would like to have the option if we needed for a surgeon to cut open Noah's head and remove the part of his brain causing seizures.  I am nervous that the keto diet won't work.  It's not always successful and if it fails then there really aren't any more options.  If meds don't work and the diet fails where are you supposed to turn?  These seizures have Noah's development at a complete stand still AFTER he went backwards quite a bit.  He lost what skills he had prior to their onset.  I'm getting nervous and desperate.  When will they stop?  Secondly and most obviously, I worry about brain surgery or any surgery for that matter.  Not something I just want to jump into again (surgery that is). So I posed the question to Dr L this morning via email.  Should we start to consider pre-surgery testing to find out if Noah is a candidate?  I'll let you know what he says...

Noah's Birthday Pictures

I'm going to post some pictures of Noah on his birthday.  It is hard to post these.  I would love to post pictures of a smiling, happy, and laughing baby.  It'd be nice if he'd look at the camera (it'd be nice if he'd look at me for that matter).  Understand that Noah is pretty much "checked out" most of the time.  The meds and the seizures have created a "zombie baby".  Every now and again we do see Noah.  I cherish those fleeting moments.  We don't get enough of them.  I know my son doesn't quite look right sometimes but he's mine.  I think he is beautiful no matter how aware or oblivious he is to me and his surroundings.  It's hard to see him so distant though.  I feel like I'm playing a cruel game of tug-of-war with a monster who has his head and I'm only holding on to a toe.  But I'm not letting go.  EVER!  So this is Noah on his first birthday and boy are we grateful we got here.  There was a time when we weren't so sure we'd make it to this day.  Happy Birthday son!

Happy Birthday Noah!

Yesterday we were asked by our ped to "draw the line".  It seems as if he expects my little boy to get sick.  What???  You heard me correctly!  Seems as if he thinks it isn't a matter of if but when pneumonia will come knocking on our door.  My response...GO AWAY! WE AREN'T HOME!!!  But the fact of the matter is, I keep him in his "bubble" and protect him from evil!  We work on his secretions, do manual percussion therapy, use our suction unit, work on sinus massage.  Nonetheless the ped insisted Todd and I talk about where we would draw the line for treatment.  Would we treat him? where would we start? where would we stop? What on earth is all that supposed to mean?  Let him go?  Let him get sick and not try to help him?  WTF!? First of all this is where I draw the line:  People who don't believe in Noah and his recovery are out of our life!  My son WILL get better.  My son WON'T get sick.  I don't care if you have an "MD" after your name...go to HELL if you think this is as good as it gets!  I refuse to lie down and accept this for Noah or for our family and I will continue to fight each and every day until he is seizure free, sitting up, smiling, eating, and being just a happy little boy.  That's a promise Noah!  Happy Birthday to the best thing that has ever happened to us!  I believe in you!

Reflux AGAIN

Well I thought the reflux was under control.  I was sorely mistaken.  Today has been exceptionally bad and it's about to make me CRAZIER than normal!  We see our ped today and I'm hoping he can give me something that Noah can tolerate.  He can't take prilosec because it's in a suspension and he gags and throws up the SECOND he tastes it.  He doesn't do prevacid.  He hates the taste (I've tried everything to mask it) and it's grainy.  He usually has a coughing fit (as ususal I fear aspiration) and it ends usually in throwing up whatever is in his stomach.  Today we have lost vigabatrin, topamax, prednisone, and zonegran all to spitting up.  I just don't have the strength to fight it anymore.  I usually jump right up, grab more medicine, more formula, and start all over.  Today I didn't.  I'm tired.  I'm really tired.  It's such a struggle to give meds sometimes and a more difficult struggle to keep them in most days.  I'm ready for things to get better.  I cling so tightly to our schedule (7 med doses a day, 7 feeds a day (only lasting 30 minutes max but he has to have at least 720 mL per day or we risk dehydration)). I try to get everything done when it's supposed to be or we are up until midnight and, again, I'm tired.  I would love to feed him when he was hungry.  I would love for him to actually be hungry and let me know.  I would love to feel comfortable that he would eat enough and I didn't have to measure everything and document every little detail of our day.  Wouldn't that be nice...

Blogging

It's not easy to blog. I want to be creative and funny but I'm not creative or funny anymore. I want to say everything all at once and put our entire story into one blog and deciding how to break things up has been difficult. I don't know where to begin. I've decided to begin with today. Today Noah is seizing on a regular basis. It's hard to watch and it happens more often than I'd like. I want to know when it's going to get better. When will he get better? He turns a year old on Saturday. A year ago today Todd and I were going to a meeting. A meeting with 20 people in white coats all with IQs that made me jealous. They all looked at us as we sat down.  I think some had sympathy for us.  This is why:  they wanted to take Noah at 27 weeks because his tumor had gotten so large and was taking blood from his body. His heart was starting to work too hard to keep up. Our amazing surgeon explained the procedure. It was the first EXIT procedure for an SCT.  They wanted to keep Noah attached to the placenta while they tried to remove the bulk of the tumor and then finish delivering him.  Deliver him after he was intubated and had an IV.  We were numb. We met with neonatologists. They told us the worst case scenarios. The first 24 hours were crucial.  He could have brain bleeds.  He could die.  We cried. I got a steriod shot in my arm to help Noah develop his lungs (he had exactly two days to do this). We went home. It seems like a lifetime ago and in some ways it was and in many ways it was just the beginning.  This has been a tough year.  It has been a wonderful year.  It's been full of heartbreak and joy.  Mostly joy though.  I found out what true love is this year.  I also found out what "love at first sight" really means this year.  My little Noah is a true gift.

One year today...

It was a year ago today we went to our first sonagram.  20 week sonogram...the nurse said it was supposed to be a "fun" visit.  We were going to find out the sex of our baby before we went to Colorado to visit our family, friends, and attend our baby shower.  It was a year ago today we heard the term Sacrococcygeal Teratoma.  It was a year today this journey began and our lives were changed forever.  It was the first time we worried about our unborn child and feared something terrible might happen. It was the day we learned we were going to have a son.