Wack-a-Mole

My life feels like a series of issues that keep "popping up".  We get through one thing and another is just waiting to rear it's ugly little head.  I'm getting pretty sick of it.

Noah has surgery scheduled for Monday.  I say "scheduled" because Todd has been sick, passed it along to me, and we are waiting to see if Noah is lucky enough to bypass the whole thing.  If he ends up catching it then surgery will be cancelled.  

It CANNOT be cancelled.

My patience for spit ups, feeds that make me so anxious I'm contemplating a doctor's prescription, and carefully not moving for more than an hour after the feed in hopes that he may actually keep it down is officially Gone Daddy Gone.  I face feeds with dread. Absolute dread.  

It seems like everything else is on hold until we can get this under control.

His PT and OT sessions have been suffering (not even sure if they really help but for argument's sake let's say they do).  The last time we saw our OT was before Christmas.  I've cancelled PT so many times I think she forgot where we live.  Noah has developed some pretty bad little habits I'm hoping PT can correct.  

So, if everything goes as planned, surgery on Monday morning, hospital for a couple of days (barring no complications), and then home (hopefully reflux free).  

Here's hoping it's not another game of Wack-a-Mole!  

So many of you have put a ton of energy and prayers towards Noah's health and recovery and we sincerely appreciate it.  You have no idea how much.  To know that Noah is so loved (and so are we) just fills my heart until it almost bursts.  

We are having a really difficult time with Noah's eating (well, actually keeping things down) and we have lost that battle.  He actually threw up his tube today.  Yes, the tube was going in through his nose and coming out of his mouth thanks to a very serious spit up session.  

Man, when that kid wants something out of his stomach he really takes care of business.  

His surgery is scheduled for the 1st of Feb to try and fix the problem.  And while we have been defeated on this front we are (I'm seriously knocking on wood) taking HUGE strides to defeat the seizure monster living in his head.  As of January 2nd we haven't seen any of his typical seizures.  I'm holding my breath and watching his every move ALL THE TIME!

This doesn't mean he isn't still seizing but it does mean things are changing and hopefully for the better (if we can just get it to stay that way).  

I just wanted to let you know those thoughts, prayers, energies, and love sent our way are WORKING and we cannot tell you how much it means to us.  I've posted some pictures below so you can see the rewards of all of your hard work!  Thank you from the bottom of our hearts!

Our little boy is gaining some head control back and his personality is showing through!  He complains about therapy finally!!!  It's nice to see he has an opinion... and is a little on the stubborn side (wonder where he gets that!).  

I surrender!

The white flag is waving in our house.  Noah now has a NG tube (tube going from his nose down to his stomach used for feeding).  He is still throwing up.  We've called and made the appointment to have the Toupet procedure and they will probably install a G tube.  I feel awful.  He feels awful and has lost about 3 pounds and hasn't been able to keep a feed down yet.  I feel defeated.  It's just not a good day(s) in the Sweitzer household.

Bad Lactose! Bad Bad!

I keep staring at my blogger page just thinking "I HAVE to post something".  My last post is such a downer and as always I seem to get over things.  I can't just let that be my last word anymore.  The spit up is bad but not the end of the world, at least not this minute (I reserve the right to change mind and attitude at the drop of a hat and probably will at the next feed).

Noah is still throwing up (I think even more than 2 weeks ago).  He just gets himself all worked up gagging and eventually he throws up.  It's so frustrating and I have tried everything but hanging him upside down to stop it.  He's losing weight which you know drives me completely INSANE!  I've spoken to the keto dietitians about what we are going to do to fix this.  So at my request we've decided to try a Soy-based formula.  

I got to thinking the other day.  Noah has ALWAYS thrown up after (before and during) feeds.  I've always been a freak and made up for the lost volume by refeeding and refeeding him.  Frankly, it's a battle I'm now losing and sick of fighting.  We've never really investigated that it could possibly be a lactose intolerance.  Hmmmm.....

Guess we'll see.  

Seriously, I'm going to kick my own (sorry for the bad word) ass if it is something so simple as an allergy.  We've/He's been going through this since day one.  Poor guy.  Todd is convinced it's lactose.  I'm more skeptical but will try anything at this point....well, except surgery (which by the way I did my own experiment (I just couldn't keep a feed down him) and dropped an NG tube a couple of weeks ago and fed him through that and it just made him gag and heave harder to thrown up but he still managed.  This makes me think a G tube wouldn't help either)!  I may have to actually give my husband some credit if this really works!   

Well, it's a new year with old news

Honestly I'm just not totally in love with this whole mom thing.  It's draining, frustrating, and I find myself in a terrible mood more often than not.  Don't get me wrong... I LOVE my son with my whole heart and soul and there's no way I'd trade him for ANYTHING.  The whole mother thing just isn't what I thought it was going to be.  I pictured it differently even after I knew Noah would have an atypical path.  

His seizures are awful.  Not as frequent but violent.  He wails and is impossible to console. It is excruciating to watch.  The beauty about these (I wish there was a sarcastic font on the computer),they happen in the middle of the night and multiple times.  We are woken up with a child who is agonizing and tortured and can do NOTHING to help him.  Then the best part (again with the sarcasm), he throws up.  It can be 20 seconds after a feed or 2 1/2 hours after feed and he'll still manage to get whatever is in his stomach out onto the bed, himself, and me.  

God, I just wanted things to be easier.  Not perfect or effortless, just a little easier.

Needless to say not much has changed around here.