Happy Halloween!

My Little "Seizure Salad"

Happy Birthday Noah!

May this year be better than the last!

I should have updated sooner....

...but I haven't wanted to!

I started this blog for a couple of reasons. First, I really needed a place to vent. Sometimes taking care of Noah is scary, overwhelming, and frustrating. I decided if I could spew words onto a computer screen I could acknowledge all of those feelings I thought I shouldn't be having and LET IT GO! And Poof! I'd be a better mom.

Secondly, I wanted a journal of life raising and taking care of Noah. I wanted a place where I could look back and read about the things that have happened. Now, when I reread past posts I think to myself "WHOA! I remember how hard THAT was and now it seems like a piece of cake compared to THIS!" (which actually happens pretty frequently).

That's Noah...always keeping me on my toes and reminding me to appreciate what is happening NOW!

BUT then this blog got another purpose. It became a window into our lives and a way for you, dear reader, to check in on our little guy.

Why have I been avoiding Bloggerville like the plague? Well, when I was in Colorado I became Trish again. My old self. The girl who has friends, hangs out, goes to the bar for a cocktail, LAUGHS more than she cries. Only this time I was, in addition to all of that, a plain ol' mom. Girlfriends flooded the house with their stories about their days, jobs, kids, husbands, and occasionally complaining about every day problems! I lapped up every second like it was the last drop of water in the desert. I wasn't treated like a sick kid's mom or pitied (out loud anyway). It was incredibly wonderful.

That being said, I haven't wanted to dive back into "Sick Kid" world.

So I'm not going to (not just yet anyway). I don't wanna and I won't.

BUT you, my friend, do deserve to know how Noah is.

So I'll tell you. Just about him. Because on this trip he too became someone different. He became just a kid. A kid who isn't hammered 6 times a week with therapists or constantly visiting a doctor for this reason or that. He became JUST Noah.

So, who is Noah? He is an absolutely adorable little boy who found his smile in Colorado.

Ahhh....Colorado

Noah is great. I'm great. Life is great.

Count Down Begins...

Well, it's getting closer and closer to our trip. I'm excited and nervous and becoming a bit neurotic. I've received the itinerary from my mom including our stops along the way. I immediately Map-Quested the nearest Children's Hospital to each of our overnight stays. Think we should be in good shape as long as Noah can behave once we hit Kansas and Colorado. :)

We have Nana and Poppy coming tomorrow and my parents and Mal will be here on the 4th. Noah has therapy on the 6th and we leave the 7th morning. Whew! It's going to be wicked hectic but all worth it once I'm relaxing with my little guy and Hanna looking at Round Top and Red Mountain from my parent's balcony with a nice glass of vino! Ahhhh... can't wait!

ReDo

After reflecting about my last blog (and I am tempted to delete it but I won't because the emotions I expressed are real), I'm bothered. I hate putting negative blogs out there although honestly it's way easier to list the negative aspects of the day when I think about what my kid does NOT do than to reach deep down and find the positive.

BUT, after watching a really sad "Law and Order" about a mother who left her disabled son to seize to death by withholding meds thinking it'd be better for him to die than to suffer (I swear I saw that episode YEARS ago and it didn't quite have the impact it does today) and a glass of wine (::wink::) I decided to pull up my boot straps, thank my lucky stars and God for my beautiful little boy and the Ketogenic Diet, and really reach deep down and find something positive and progressive about Noah's development.

His refusal for food is a development! He just isn't as passive as he used to be and he doesn't quite know how to express himself or assert control over himself or his life. So he is rebelling in a really bad way! I wish he would rebel by crawling out of the room, but you take what you can get. :)

So I've snapped some new pics of the little man. Boy, he's growing like a weed. Hopefully he will start getting some control of his body so he can help out his poor mama's back! Enjoy!

I know it's been too long since an update when my friend Amy texts me to get the latest on my little man. ::smile::

I keep thinking about what to say but when I get to my keyboard I get stuck.

Noah is being Noah. Which means he's healed from the pneumonia (Thank God) and he's back to his usual self when it comes to feeds and then some. He has started retching and gagging the minute I pick him up and hold him in "feed" position or when the bottle comes near his face. It usually leads to a pre-feed throw up. Nice, huh?

Such a Bad Bad habit! He's impossible to reason with and impossible to bribe so I'm getting to my wits end and patience is dwindling.

On the PT and OT front, we keep doing the same stretches and exercises every day with no results. I'm ready for some LEAPS and BOUNDS of development (I'd even take a small hop at this point). I'm tired. I want results. I feel like I've been going full speed ahead without letting up for a while now and just a little bit of improvement would keep up the momentum. But it's just not happening. I feel deflated and worn out.

I'm very much looking forward to our trip to Colorado. I think looking out of the window at a new view may be enough to recharge to old batteries. What I wouldn't give for my little man to behave long enough for me to get a massage, haircut, teeth cleaning, pedicure,.... okay, let's be realistic, I would LOVE a worry-free shower for longer than 5 minutes. My hair is dying for some conditioner! But as of right now N-man has me watching him like a hawk (a hawk with hairy legs and split ends!). ::Smile::

Pnever a dull moment with Pnoah

Facing the fears this week.

Hospital (NOT CHOP) and the dreaded P-word (PNEUMONIA).

Noah was acting a little "off" this week so I knew something was up but just couldn't put my finger on it. He started off cranky then moved onto coughing then into breathing kind of fast then I headed to the Pediatrician's office. I don't really mess around with respiratory issues when it comes to my little Noah so I thought he should have a once over by someone with "MD" after their name.

Needless to say, we were admitted to the hospital after a short visit with our doc.

So we are home finally. I shouldn't say "FINALLY" since we've been in the hospital for a much longer stay and there are kiddos out there who would kill for a 4 day stay. But for us, we feel like we've served our time in such a place and do not like it one little bit when we have to go back.

Official diagnosis: Pneumonia (hence my not so clever title).

Unofficial diagnosis made my Dr Mom (and a few nurses): Infection that would have most likely developed into Pneumonia.

Dr Drama (I do like our pediatrician but I think sometimes he's a touch dramatic when it comes to Noah's diagnoses) was actually the attending doc in the hospital for our last couple of days which was really nice. He let us come home with oxygen and breathing treatments rather than making us stay until Noah is completely free of oxygen support. It's great because knows us and knows No would do better at home and trusts that I will do what I'm supposed to when it comes to his respiratory therapy.

AND let me just say (this is a little hard for me since I consider myself a "CHOP snob"), the hospital, nurses, and docs were amazingly wonderful. Noah got such great care (except for some blood draws by some inexperienced phlebotomists, bless their hearts). The compassion and understanding was tremendous and I cannot say enough good about our experience. They even let me co-sleep with my little man. Unheard of at CHOP! The nurse rolled in a big 'ol hospital bed and I signed a little waiver and that was that!

The doctors did exactly what needed to be done and they got us home pretty quick. I am so grateful! I was nervous going to a rural-ish hospital (ie NOT CHOP) but pleasantly surprised.

So that's that. We are home. Noah is resting comfortably and though he's a bit weak, he's doing awesome. My little ROCKSTAR!

Weight has been lifted...

and it's not the SlimFast (what an awful diet, BTW!).

So, I canceled. I felt like I was calling in sick to work and LYING (like the time I called in sick from an office job in Colorado... in the casino parking lot in Mesquite Nevada.

Todd was a bad influence (although looking back, I think it was my idea)!

::SMILE::

Ahhh...the early days of our relationship. Good times!

It felt good afterward and I actually rescheduled for August, just in case things don't get better and we get desperate.

So I do have some better than average news to report about my little man. Let's just call them "Noah's Developmental Milestones" since he has decided to rewrite that book all together.

First, he has been spending more time on his tummy and less time crying about it. I actually caught him LOOKING around at some toys and a mirror (he didn't think I was watching). He has managed to roll over completely from his tummy to his back (he does tend to stop once he reaches his side but we are occasionally surprised to find him rolling onto his back). And today he started playing a game with me. I started by standing in front of him and then walking a complete circle around him. He actually followed me to his left side then turned his head to the right to "find" me when I came back into view. He did it several times and was rewarded each time with TONS of kisses and YIPPEES! Lastly, I started sitting him up on his mat and using HIS arms to prop up. He'll stay in that position for quite a while before his poor little arms give out. But it's so cool to see!!!

It's been a total blast to see him respond and start doing new STUFF! We are over the top excited and can't wait to just watch him BLOSSOM from here! I just hope he keeps it up (my always guarded optimism). What a little TATER (as in "Tater-Todd", a little nickname I've decided to give him!). :)

See, it's not always terrible and dramatic around here! Some days I'm just beside myself with gratitude. :)

Anxiety!

Do you ever sit around and decide to do something totally time consuming and a complete waste of time just because?

I do.

I've been thinking about how many trips we've made to CHOP since we actually got to bring Noah home. So I broke out the calendars and my "Noah's Medical Journals" (I've been writing down his feeds and throw ups for more than a year now).

We have 4 pending appts in June and am seriously considering canceling one of them.

I am so SICK AND TIRED of the hospital (I do believe I've said that so many times before but I cannot emphasize it enough). It's actually not the hospital itself; it's the preparation, packing, and finally, the drive.

I have such anxiety about the trip. Noah DOES NOT travel well. By that I mean it's all about gagging and throwing up and crying for the 5 hour trip. It's a little hard to concentrate on the road when your kid is choking on vomit. I won't even go into all the baggage that accompanies my little man every time we leave town. Thank God my parents have loaned us their Surburban to drive so I can actually take all the supplies we need.

When your kid has a diet that treats his seizures, food becomes REALLY REALLY important.

Throwing up isn't an option any longer.

Noah had surgery to correct his reflux and thus his throwing up (The fundo, remember?). It didn't really work. He is throwing up and I mean throwing up, like CRAZY! I'm going insane.

I am trying to juggle feeds (every 2.75 hours), free water feeds (1.75 hours post feed, 45 minutes prefeed), throwing up, refeeds, 6 therapists coming to the house, Poor Miss Hanna who is relentless with her ball, the house, and Joey who is incessantly crying for kitty candy.

Now I am having anxiety attacks about an upcoming appt at CHOP that I seriously think is ridiculous. It's the fundo program appt. I just can't imagine what they can tell me. Surgery didn't work? Let's run more tests? More surgery? Re Do? G-tube? See, the thing is I DON'T CARE what they say. We won't have another surgery (one thing I hate more than dr appts is surgery). We won't opt for a tube (it doesn't stop throwing up anyway). The last time they did an upper GI study it was a TOTAL NIGHTMARE.

So I guess I have to resolve myself to this reality.

Noah will always throw up. Walks are a thing of the past. Thank goodness someone decided to drink fermented grapes and then make more for the rest of us.

It's rough. I'm tired. I feel terrible for a boy who will never enjoy eating. But it is what it is. At least he's not having seizures to top things off (knock on wood). He does cry a lot. He hates all therapy. He doesn't like to be touched. But he IS cute as can be and he is mine all mine!

So CHOP, I'm breaking up with you. We have been to visit you every month since Noah came home (Nov 2008) except for 4 (one of those months we went to Detroit to see the Infantile Spasms Guru). 18 months out of 21 we have been to the hospital for one reason or another.

I am DONE, DONE, DONE. Think I will cancel that appt. My baby needs a break (so do I!).

I've been on a bit of a sabbatical lately because I just don't know what to say. There's been a ton on my mind and every time I sit down to sort through things I suddenly get writer's block. Go figure. But I can't leave Noah's "fans" hanging for too long. It's just not fair to you.

So I've decided to sit down and force myself to get some things out.

We are planning a trip back to Colorado (Noah's first visit) in July and I'm nervous. It scares me to leave this environment to which we've both become so accustomed. We are total "home slices" and don't deviate from our usual routine in a good way. But it'll work itself out and it will be good to get out of the house and do SOMETHING. Right?

Noah has changed formula in an attempt to cut out the spitting up (Remember back in the day when we had surgery to stop this?? Yeah, me too). It hasn't worked and the spitting up has become throwing up and is occurring with tremendous frequency. It's really making me crazy and desperate. We've stopped going outside for our walks and are confined to "the room" yet again. Hopefully this will get better. It has to. Right?

We've decided to incorporate a hearing teacher, speech therapist, and a teacher to Noah's schedule (in all our free time between PT, OT, Vision, feeds, and spitting up). Should be interesting. But we are trying to do everything we can to ensure Noah meets his highest potential (God, I hate that freaking phrase.).

That's about it for now. He's up from a nap and I'm back on Puke Patrol.

Back in a funk

I've been feeling kind of blah lately. More frustrated than anything really.

Noah is being Noah. Unpredicatably predictable. Last week, he was in a good mood and somewhat receptive to new forms of therapy. This week, he's been very grouchy, whiny, and uncooperative. He's not into PT and OT this week. He's really into being left alone. I am so ready for strides of massive proportions in a forward direction. NOT sideways or backward.

I want grabbing toys. I want reaching for me. I want giggling. I want laughs, not cries. I want. I want. I want.

It's not really about me. It's about him. He who doesn't WANT to do anything. We've been having conversations about the intrinsic desire to WANT things or his lack thereof. He doesn't WANT to even have the discussion. He does want one thing...to be left alone. I just can't accept that.

So, our days are filled with me trying to convince him to do things and he just disagrees in his Noah way. What is the Noah way? Well, let's just say it's his way of shutting me out.

Umm, he's not sleeping....

...the rest of the story.

Well, our trip to Philly was less than boring, yet again. :)

We went on Sunday and met with my parents, sister, and niece who flew in from KS and CO. It was so excellent to see them and Mallory (my niece) FINALLY got to meet my No-man. She was so incredible with him it brought tears to my eyes. He was taken by her (who wouldn't be as she has grown into such a beautiful young lady of twelve) and she very patiently read to him and stroked his face and head and spoke so sweetly to him. Very very precious. I jokingly say I'm training her to care for him after we die if he requires such care, but I'm not really joking. :)

We got to CHOP around 6 am to check in and do the usual meetings with the docs and nurses and go over procedures. Thankfully No held his O-sats long enough to please the intake nurse (although they weren't quite as high as they should be).

As we sat in the waiting room full of parents waiting just sitting around with their faces full of fear and exhaustion I found myself eavesdropping when the update nurse came by to tell all of us how our kids were doing. Somehow hearing that some kids were going to be in the OR for 6 1/2 hours made me feel a little better (such a selfish thing) and I kept flashing back to No's surgery that lasted hours and hours (his spinal surgery). Oh, that was such an awful wait. Thankfully this one was only about 2 hours.

We got to go back to recovery to wait for him to wake up and our hopes of leaving soon after were sky high. That soon faded when Noah kept dropping his O-sats and really freaking out the nurses. At one point they were trying to secure the seal of the face mask and began bagging my baby. He of course freaked out and I had to say something like..."Just stop and give him a minute!!!". They did and he recovered but they admitted him in the the ICU for the night. Seems like they didn't take me seriously when I told them this was typical of his post anesthesia self and he proved me right by not having anymore issues and was a total rock star for the duration of his stay. I, however, was a wreck. I really don't like being in the hospital. I mean really really really don't like it. I've/we've served our time and now I hope we get a break (a very very very long break) from visits in the future.

We went back to the hotel and spend the next two days with my family eating, playing Wii and Sorry, and just really enjoying being together. We had an audiology appt and Miss A actually told us No has capabilities of hearing normally (if he does or not is a different story and that would make it a neurological issue) so that was a huge improvement from our last visit. Our Neonatal follow-up appt just told us that we are doing the right things to support No is this battle and he looks better than then last time they saw him. Yippee!

Did you expect anything less from my little hero? He is so amazing and we are lucky to have him in our lives. I find myself thanking God everyday for blessing me with such an incredible soul for a son. Who would have thought that I'd be trusted with such an important job? I certainly didn't.

And now you know the rest of the story. Good Day! (that one was for you Pops and in memory of Paul Harvey).

Quickie

So I know many of you are anxious to hear about what happened with surgery and appts. I'm exhausted so this is just a status update.

Surgery went well.

Stayed in the PICU that night.

Left next day.

Had appts next day.

They went well.

Loved seeing my family.

Didn't have enough time with them.

I really will do a real post later. Just want to gel for the night.

Thanks for the prayers and the positive thoughts you sent our way. Once again, it worked!!!

Little of this...little of that (pics)

The Stander (aka Medieval Torture device if you ask Noah)
Easter Sunday
Actually propping ON HIS OWN!
The Creepster Crawler (yes Noah, I am totally serious about this crawling thing!) ::smile::

Easter

Noah had a nice Easter (so did we). Nana and Poppy came up for a visit and Hanna had a total blast following Poppy around (NONSTOP!). We got a big Easter basket filled with deliciousness and it was great to have company in the house. Poppy keeps Todd on his toes so Nana keeps me and No company.

No-man is being a little feisty. It's hard to blog about it. I'm feeling a bit defeated yet again. He's figured out how to throw up again so we are dancing that dance (part two). It's not as intense but it's definitely a little more unnerving since it was supposed to stop for good with the Fundoplasty. Not the case. We've made the phone calls and sent the emails to possibly try a new formula but nothing happens overnight when it comes to change and THE DIET. We were attempting solid foods and he was doing pretty well, but that is all on hold for now. :(

Surgery is next Monday and I'm becoming more anxious with every passing day. THANK GOD my parents, sis, and niece are coming in for support. We will be able to spend a few days together and so what if it's in the hospital! That's a second home for us anyway! Frankly, I feel more at home there than most places.

On a high note... Seizures are still at bay (Knock on wood!!!) and Noah is using his new equipment (Stander and Creepster Crawler). He's SO NOT a fan of the new "toys" but boy oh boy I am! Push Push Push!!! He'll be walking in no time, Pops! :)

Big Haircut for a Little Boy.

Well, I finally caved. The hair was too much and the head control was too little. After repeatedly pulling the little man's hair on accident trying to help his big 'ol melon (I should say his poor little neck) move, I had my limit (and I know Noah had his).

Now I feel strangely superstitious.

I've always said that I wasn't cutting No-man's hair until he walks. Did I subconsciously give up? Realize walking probably is not in his future (those damn little foxes!*)? God, I hope not and that wasn't my intention. I like to think I was being practical.

As my little dude gains head control he can grow a big huge head of curly locks.

Until then, sorry buddy, it's a buzz cut for you.

Friday March 26th is Purple Day. It's a day to wear purple to show your support for all of those who suffer from seizures. So maybe it was a good time for a haircut so no one will mistake my little man for a girl when he is wearing his purple! :)

*My friend Lauren put it so eloquently in her blog (THE BROWNS'...BLESSED BEYOND BELIEF (on my blog there's a link called "Gage" in the "blogs I follow" section and I highly suggest you check it out)) about those days when things just aren't "right".

Working Hard!

Today during PT I realized Noah doesn't appreciate belly time like he used to (it used to be his comfy position and he'd nap!). Well, he's rebelling! WaHooo!!! It's not pretty but he's getting there!

Make video montages at www.OneTrueMedia.com

Once Bitten...

Yes, I was bitten by the "Negative Bug" a few days ago. It happens now and again. I lose perspective on everything and focus on the have not and not the have. Guilty as charged.

I must move forward and give my No-Man (and myself) a break on occasion. ::smile::

We will continue to plug away and try our best. Dr C (Detroit Dr) looked over No's EEG and said it was "Good News!" and early intervention (PT, OT, and Vision) is what we need to focus on now to get No to his highest potential. That's what we'll do (it's what we've been doing) and we will continue have faith it will all "click" soon. C'mon baby, you can do it!

Reality Bites

It's finally hitting me (and hitting pretty hard) that there is going to be something wrong with Noah. We can "fix" all we can but it's never going to be enough.

I'm running out of excuses for why he isn't doing things.

First, it was being premature. But being premature doesn't necessarily keep you from developing and doing typical baby things. Second, it was the SCT and surgeries but there are many kids with SCT resections and they are just fine. Third, it was reflux. We couldn't work him hard enough and position him correctly to do all the therapy he needed because he always threw up. Last, it was seizures. The electrical storms constantly firing in his head kept him from learning or retaining new information.

So we went down the checklist of ailments and managed them to the best of our ability. Tonight I find myself sitting here scratching my head trying to figure out for the life of my why my little boy won't smile or reach for a toy or acknowledge me or miss me when I walk away or cry when he's hungry or love me back in a way I recognize. And the reality of our situation is slowly sinking in like a knife being pushed into my heart.

Because as of now, he just ran out of excuses of why he can't. So, why won't he?

New Year's Rockin' Eve

While things aren't happening as quickly as I'd hoped (developmentally) they are definitely improving. The weather is getting nicer and we are able to get outside more and more. I just want Noah to start doing STUFF! GOOD STUFF (not seizing or throwing up; I always feel like I have to cover my bases when it comes to asking for things!) like reaching, smiling, chewing, you know, normal baby stuff! I am just never satisfied! I just keep pushing and most times pulling for more.

Now for an update on the recent doctor visits:

MRI: No changes! WhaHoo!

AFPs (alpha fetal protein level which is a tumor indicator): DOWN DOWN DOWN from last time! THANK GOD!

Surgeons: Satisfied with progress so far. Surgeon 1 we will see in a year and have another MRI. Surgeon 2 hopefully we won't see again (nothing personal!).

Urology: The "ball dropping" isn't just for Dick Clark on New Year's Eve (my very poor attempt at humor). No-man does have a testicle that didn't descend so they have to go in surgically and bring it down. This surgery is scheduled for April 12th. YES folks, ANOTHER freaking surgery. Whatever! SO SICK OF THE HOSPITAL! But hopefully this will be it for a while.

Keto Team: Pleased with progress. Will talk about weaning meds at our next visit in 3 months if our little man can manage to maintain seizure freedom.

Eye Doc: Wants to see how No progresses and hopefully with head control, eyes will improve. Keep fingers crossed!

That's about it, I guess. Three days is a long time to spend running from floor to floor at CHOP but it was SUPER nice to have my NICU friend come along for a day. Thanks Amy! We are so happy to be home and getting back into our routine.

Please Forgive Me

I didn't realize it's been SO long since I've posted.

I think it's easier to post when things are rotten or fantastic but posting when things aren't exactly like I expected is a little more difficult.

Noah is still retching and gagging after feeds and it makes me CRAZY! I feel terrible for him and am so worried he'll develop an aversion to eating or blow his internal sutures. I do my best to help but I've resorted to constantly having a bulb syringe in hand to help him out with secretions. I feel like I'm sucking the life out of him but his secretions are so copious and thick he just can't deal with them on his own and that makes the gagging and retching even worse. I envision him one day running for the door at the mere sight of the thing (sound familiar, Mom?).

We go to CHOP on March 1st for an MRI and a visit with Dr Hero and Dr Hero II (1st surgeon and 2nd (2nd being our newest hero since he has enabled us to go out as a family for walks, weather permitting and it has been food for my soul!). March 2nd is a meeting with the Keto Team (also our heroes for obvious seizurey reasons) and we have an appointment with Noah's Urologist (to discuss pending surgery). March 3rd is an appointmet with the Opthamologist, Dr M who we haven't seen in about a year and am anxious to hear his opinion on Noah's vision capabilities.

**Amy, can we manage a visit sometime in here? Let me know. (FYI: Amy is a woman we met in the NICU and her daughter had an SCT too. Immediate Soul Sister!).

We had a most excellent visit with Tracy, Jeff, and Baby Colin. OMG! My new nephew is ADORABLE! They almost didn't make it out the door with him! ::Smile:: Their visit recharged my batteries more than I expected.

I think that is about it. We are expecting some equipment to help Noah with standing soon and I am excited. It's been SO VERY nice to play with him and read and not carry around a bowl to catch the last feed coming back to haunt us!

All in all things are definitely better and I'm just left wanting MORE! Give me an inch and I'll take a mile!

1 week post op

Okay, so a week ago Noah was in the ICU with an anesthesiologist bedside debating on reintubating our little rockstar.  His O-sats were low and he was REALLY working on the whole breathing thing.  Not surprisingly, our little one pulled through without the extra "help".  It was ugly but he got it done.

With that in mind, today is a ton better!  Either I'm getting used to everything or things are actually settling down. Noah is still gagging and retching during and after feeds but it seems like it's not as much.  The Doc did say he'd have to learn how to eat again after the swelling goes down and he starts to heal.   

Time will tell.   My hopes are back in the stratosphere again.  :)  Man, it doesn't take much does it!?!

Thanks for the lovie words, many prayers, and support.  We are hanging in there and the people who love us so good are a HUGE reason we can keep fighting the good fight.   

Pops is going in for a new knee on the 10th.  Please pray for his speedy recovery so he and Noah can make their mini hike to Pete's Lake this summer (Dad, it is on the calendar for July 8th!).  Good luck and we LOVE you!!!

Surgery Update

Well, it wasn't an overnight success.  

I don't know what I was thinking.  Guess I was picturing feeding Noah after the Fundo and actually being able to relax, see him enjoy meals, and relaxing himself.  Maybe leave the room for a few minutes without worrying something terrible is going to happen.

Not the case.

It's worse than before.

Now after a feed there are bouts of retching and gagging (2 of the 3 things he SHOULD NOT be doing).  Then there's the coughing and sputtering.  It's awful.  Now we not only have to worry about aspiration, we have to worry about him damaging the procedure.  

I am so disheartened.  I'm afraid we made a HUGE mistake.  

It's got to get better, right?

EEG Update

So....we just got an email from Dr L about Noah's EEG.  

During the 20 minute test there was... get ready... NO SEIZURE ACTIVITY!  

Such great news!  

We didn't expect to get a result like that.  Just so grateful and excited right now.

Working on weaning Noah from oxygen.  He's had a partial meal and tolerated it exceptionally well.  

Keeping fingers crossed things keep going in this incredible direction.  

I have to go jump up and down and scream from the rooftops right now.

Bye! 

Fundo is no Fun...doh!

Well, as usual things are never easy for us...

We got to the hospital bright and squirrelly and things were going well.  We went into pre-op for vital signs and to have the "talk" with all the docs about complications and whatnot.  The standard yadda yadda we've gone through before.  Only THIS time there was a little snag.  Seems our little man wasn't carrying enough oxygen in his little red blood cells causing a low oxygen saturation.  The first (yes, first) anesthesiologist (who was as sympathetic as ice cubes and had the bedside manner of a turnip) refused (you heard me, REFUSED) to put him under for the operation.  WHAT?!?  AND she was  so mean about it.  This caused many tears on my side and pleading with our surgeon to do it anyway.  Please fix our little boy!

See, Noah NEEDED the surgery.  He wasn't going to go home and get better...he was on his way to getting sick (really sick) from throwing up so much and inhaling small amounts into his lungs (this was confirmed by a chest x-ray).  Our surgeon (God Love Him!) advocated and really went above and beyond (he really felt that Noah needed this done ASAP) and found an anesthesiologist who would take the risk and go ahead (God love him too!).   

Noah got his procedure done (It's called a fundoplication).

We are in the ICU and he's hanging in there.  He's been working really hard to breath (scaring the daylights out of us) but that's pretty normal for him after sedation or general.  I keep reminding myself about that.   

He's had an EEG done and we are waiting to hear about that too.  

We had a very very unhappy roommate last night (actually a Haiti earthquake victim and her mother).  She's since been moved to a private room.  So far we are alone here but that could change pretty fast around here.  

That's it for now.

Thanks for the prayers and sweet words of support.  Please continue as the hardest part is the eating!   

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.