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.