Noah's Archives

Happy Halloween!

2010-10-31T19:52:00.001-07:00

My Little "Seizure Salad"

Happy Birthday Noah!

2010-08-29T06:19:00.001-07:00

May this year be better than the last!

I should have updated sooner....

2010-08-22T08:04:00.000-07:00

...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

2010-07-15T11:51:00.000-07:00

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

Count Down Begins...

2010-06-30T10:19:00.000-07:00

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

2010-06-22T17:02:00.000-07:00

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!

2010-06-22T10:45:00.000-07:00

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

2010-06-06T10:34:00.001-07:00

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...

2010-05-26T15:20:00.000-07:00

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!

2010-05-24T18:59:00.000-07:00

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!).

2010-05-02T06:53:00.000-07:00

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

2010-04-27T18:22:00.000-07:00

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.

2010-04-16T18:23:00.000-07:00

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

2010-04-15T16:56:00.000-07:00

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)

2010-04-07T16:53:00.000-07:00

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

2010-04-05T06:28:00.000-07:00

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.

2010-03-23T16:03:00.000-07:00

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!

2010-03-15T13:27:00.001-07:00

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...

2010-03-11T09:09:00.000-08:00

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

2010-03-08T17:43:00.001-08:00

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

2010-03-05T11:34:00.000-08:00

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

2010-02-23T16:28:00.000-08:00

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

2010-02-08T12:06:00.000-08:00

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

2010-02-06T07:40:00.000-08:00

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

2010-02-02T13:05:00.000-08:00

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!

2010-02-02T08:02:00.000-08:00

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

2010-01-30T14:36:00.000-08:00

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!

2010-01-15T17:07:00.000-08:00

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!

2010-01-14T13:03:00.000-08:00

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!

2010-01-09T14:37:00.000-08:00

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

2010-01-01T10:01:00.000-08:00

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.

Reality Check

2009-12-28T18:15:00.000-08:00

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!

2009-12-27T19:29:00.000-08:00

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

2009-12-25T20:01:00.000-08:00

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...

2009-12-24T13:43:00.000-08:00

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...

2009-12-21T15:26:00.000-08:00

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...

2009-12-15T17:55:00.001-08:00

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

2009-12-14T09:23:00.000-08:00

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...

2009-12-07T18:03:00.000-08:00

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...

2009-12-05T07:13:00.000-08:00

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

2009-12-01T13:15:00.000-08:00

I've been a bad bad blogger...

2009-11-30T18:02:00.000-08:00

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...

2009-11-16T15:23:00.000-08:00

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!

2009-11-15T06:56:00.000-08:00

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

2009-11-06T11:39:00.000-08:00

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...

2009-11-04T07:42:00.000-08:00

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!

2009-10-31T14:45:00.001-07:00

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

2009-10-29T19:11:00.000-07:00

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...

2009-10-27T09:41:00.000-07:00

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...

2009-10-23T06:10:00.000-07:00

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?

2009-10-19T12:52:00.000-07:00

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...

2009-10-13T12:13:00.000-07:00

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

Little Update

2009-10-11T09:43:00.000-07:00

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!

2009-10-03T12:11:00.000-07:00

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?

2009-10-01T16:34:00.000-07:00

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...

2009-09-25T15:55:00.001-07:00

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!

2009-09-21T17:12:00.000-07:00

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.

2009-09-19T06:31:00.000-07:00

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...

2009-09-17T18:38:00.000-07:00

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?

2009-09-15T17:53:00.000-07:00

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...

2009-09-09T04:44:00.000-07:00

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!

2009-09-04T13:37:00.001-07:00

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!

2009-09-02T09:56:00.000-07:00

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...

2009-09-01T10:23:00.001-07:00

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

2009-08-30T18:28:00.000-07:00

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!

2009-08-29T05:00:00.000-07:00

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

2009-08-28T07:26:00.000-07:00

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

2009-08-27T10:22:00.000-07:00

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...

2009-07-10T09:38:00.000-07:00

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.