Team Nate Dog

Nate Day is 'round the corner!

2009-09-30T10:14:00.000-05:00

Hey All,

long time no blog...

So, Nate Day at the Race Track (http://www.midamericamotorplex.com/) is right around the corner. For those of you following (not that there's been much to follow really since I suck at keeping up at this), we are having another fundraiser at the track Oct. 4. It will be a lot like last year, probably not as crazy but hopefully more relaxed! There will be racing of course, a silent auction, t-shirts, live music, raffle. Hope those of you who can make it are excited because we all are at my house.

We still have tickets for the Harley Raffle, $50 per ticket for this sweet bike.

Winner does NOT need to be present (at the fundraiser) to win!

Also, we still have barstool racer tickets for $10.

Email me at teamnatedog@hotmail.com for tickets.

Nate update....

Nate is super duper! He's getting so big and if you can believe it, even cuter! He is smiling, rolling over, occasionally putting weight into his legs, eating like a champ. He's just a joy!

Recently, we saw his neurologist and are going to try to back off his anti-seizure meds a little. His seizures have decreased substantially, but he's very sleepy through the day and the combination of two of his meds could be to blame. Of course, the hard part about backing off on the meds, is if he starts having more seizures again. You just never know until you try I guess. We are going down one tablet oftTopomax per week. He used to get 5 in the morning and 5 at night, now we've got him down to 4 in the morning and 4 at night. Seems to be ok now, we shall see. It would be great to have him awake more!

He went through a phase where he was being VERY vocal. It's like he was testing out how loud he could be. But lately, he's not as vocal. Maybe the novelty of make sounds has worn off, or maybe his brain is trying to focus on another mode of development right now. Who knows, I try not to get down about it, but it's hard not to think that maybe something's wrong. We thought maybe he had an ear infection, or sore throat. Neither. Maybe his implant wasn't working. No, it's working. So, who knows.

He is going to his school 3 days a week now. On Mondays and Fridays he has different therapies-- PT, OT, Feeding, Music, Aquatics, and Auditory. Then Wednesdays he has "baby class". I feel he gets so much more from his individual therapies, but the class part IS fun. And very educational for me as a parent.

Everyone at IDC just loves little Nater Tot. I mean, who doesn't? But, his girl who does his feeding and auditory training just told me she's moving in October. She told me that she's gonna miss Nate the most. I believe her. She is just ga-ga over him. We will miss her.

Here's a few new pics of Nate and the family for your enjoyment. The wonderfully talented Amy Martin (http://www.amymartinonline.com/) worked her magic once again!

Thank you all for your continued prayers and support! We love you!

Love,

Carolyn

Absence makes the heart grow.... oh whatever!!!!

2009-06-19T14:28:00.001-05:00

Well, I should start this blog by saying sorry for not posting for such a long time, but I'm not. Honestly, the more time that passed and I hadn't posted, the more I knew it was going to take me forever to write this... so regretably I kept putting it off-- like so many other things in my life right now. So, those of you who check this blog regularly and have been wondering WHAT is taking so long to post or that I'm NOT posting anymore, relax... I'm here now.

Ok, maybe I'm a little sorry... I know you all like to hear about Nate's progress, so I'll try to be better.

Well, there is much to blog about so i'll just get going.

Nate is SUPER! He's getting really big now, he's going on 18 mos. next month, he's about 24 lbs. He's growing slowly but steadily, so that's great. He has 8 teeth now, they are not fully grow out yet, apparently the phenobarb causes slow tooth growing (I've been told). But they ARE there and they make his smile even that much better!

YES that's right-- his SMILE! Nater tot has been smiling for a while now! It's an adorable little half smile to the left side of his face, and it's a bit delayed (meaning that if you tickle his little fat foot, he smiles about 5 seconds or so after it), but it's no doubt a REAL smile! So, I feel so good that my precious little guy is actually responding and experience his world enjoyably! His favorite person is his daddy (of course), he smiles so good for him. Also, he LOVES Emi (and she adores him as well), so he smiles big for her too. I don't seem to bring out as many smiles, but occasionally he seems to enjoy my company. My favorite part of the day is when he wakes up in the morning and you walk into his room and he's laying there in his crib. You walk slowly over to it and peer over the top and without even saying anything or him even looking at you, he smiles. It's honestly the cutest thing I've ever seen.

Also, here's a big one.... Nate has rolled over! Oh yeah...

He's done it numerous times. It's from his belly to his back so I'm sure gravity is involved quite a bit, and he doesn't really like to show off for anyone. But, he's definitely done it. I've SEEN him do it a few times, but usually it's one of those thing where you put him on his belly, walk into the kitchen to get something, come back out and there he is on his back! Little stud! We're very proud of him for doing this, it's a start for him to be a bit independent. Obviously he doesn't want to be on his belly, so he has figured out how to not be. I believe that him rolling from his back to his belly is the next thing he'll accomplish. He's very close to doing it, but that darn arm gets in the way. Also, when he's laying on his back he like to spin around. Somehow, he works himself around enough that his head will end up where his feet were and his feet are where his head was. I like to call it his breakdancing moves.... LOL! And he also lifts his leg (usually one at a time) in the air and points his toe. That's his version of ballet. It's very cute.

He's been putting more weight through his legs, not all the time, but occasionally you'll get a random push out of his legs. Usually, you have to stimulate it by pushing his legs up and down a few times. Next we'd like to get him to put a little weight into his arms and hands. He keeps them bent and hands to the face, or back of the hand to the face and elbow pointing straight up. So, he never really has to put any weight baring into his arms. But we're working on it, it should just take time. His PT (Mo) says she's happy that he's a lower toned kiddo because then she's not having to fight him by stretching him out although I think his does definitely have his moments of tightness through his arms. But once you stretch them out he loosens up.

We got a KidKart recently. It's a wheelchair/stroller. Basically, it's a stroller, but it has lots of customized support in it. Head support, trunk support, a butterfly harness across his chest and he sits with the bulk of his weight going through the hips (like when you sit in a chair). This is better than the reclining postion, because you don't put weight into any joint really when you lay back. Also, the base (which is the chair part) tilts back and forth, so if you want him to work on head control you sit him upright more. Then if he falls asleep, you can just tilt it back. There is also what's called an "up/down" base. This is what we keep in the house. We put the chair in it and it has hydrolics that makes him higher or lower to the ground. It's really nice. We feed him in it and then we can take it where ever when need to go and it's so much better than this huge travel system stroller I used before. I always felt weird about using the handicap placard and then whipping out a stroller. I thought maybe the little old people at Walmart were looking at me like I was faking the need for a handicap space just for rockstar parking. I often thought that maybe I should limp, just to justify it to someone who didn't know us. Because, when Nate's in his regular stroller, he just looks like a kiddo who's worn out and about to fall asleep. But with this new fancy KidKart, it looks more like a mobility device for someone with disabilities. So, anyway, we take this thing everywhere now. We took it to Worlds of Fun, the Royals game, restaurants... it's wonderful!

Also, we got a bath chair. It looks basically like a glorified lawn chair. It's as big as our bath tub, it reclines, the legs come up and bend. It has safety wedges on the sides and a strap to keep him in. It's all a mesh fabric with a rust proof frame, and it's fabulous! We got a detached shower head so now Nate gets showers instead of baths. We would have to fill the bath tub up all the way for Nate to "sit" in the water since the chair sits about 6 inches up off the floor. But I've always preferred showers anyway, I feel they get so much cleaner. Anyway, bathtime (or shower time) is now enjoyable. I got to the point where I HATED bathing Nate. I would avoid it like the plague! I justified not giving him a bath by just giving him a wipe down with a wipe. It was just TOO hard, he was slippery and you basically had to try to do everything one handed and since he's a growing boy, that's almost not possible anymore. This has made things soooooo much easier!
We wanted to do the hyperbaric chamber again this summer, but we just can't seem to figure out HOW. It's an hour away, an hour and a half in the chamber, then an hour home. And it's typically 40 treatments you do. Some people we met last summer would come for 4 weeks. They'd go twice a day into the chamber and then after a month they'd be done. We went once a day for 8 weeks. And the only time we could do it was at 1:00 pm. We would take Emi & Charlie with us and they'd just run around & play inside the building while either Craig or myself would be in the chamber with Nate. And since it was nearly 4 hours out of the day, that would practically negate going to the pool. So, we had the thought of going twice a day for a month and maybe our neighbor (who does daycare) could watch Emi & Charlie. But, the motivation to go do that isn't really there. I mean, we really believe that it's good for Nate to do this, it's just we're so busy and it's hard to get up the energy to do the oxygen treatments. We'd have to drop the kids off pretty early in the morning, and then after going into the chamber the first time, figure out what to do for 4 hours til the next "dive". Plus, then a whole month would be taken away from our daily fun with the kids. I don't know what to do. OH and also, Nate would have to miss school and his therapies for a whole month. What to do? I wish there was an easy answer...
We ARE planning to have a fundraiser again this October. Oct. 4, 2009 is the official date. It's going to be at the MidAmerica Motorplex again. We would like it to be even better than last year, so mark your calenders and hopefully join us for some drag racing and all around fun! Again, we plan to have a live music show after the races. Unfortunately, we couldn't snag a Saturday, so this will be on a Sunday again. I hope you all can make it and stay for the live show, it was so much fun last year and our boys from Push to Start are pinky sweared to be there!
Our big ticket item that we are planning to raffle off (drawing will be the day of the fundraiser) is a 2010 Harley Dyna Street Bob.

It's pretty SWEET! (This pic is actually a 2009, because the 2010 pics are not out yet but you get the idear!)

Raffle tickets are $100 a piece. We are keeping the sales of the tickets at 300 for better odds, so if you're interested please email us at teamnatedog@hotmail.com and reserve you're self a ticket. Winner need NOT be present to win.
Can you imagine having yourself a brand new Harley for $100? And knowing that your money actually went to a good cause also? Good luck everyone and thank you for your support!
We are hoping to have a night at Fuel again this summer to sell some tickets as well.
Also, up for raffle in a custom built BARSTOOL RACER.

It's super fun.

It's kinda like a go-kart with a barstool for the seat. Those raffle tickets are $10 a piece. Let us know if you'd like one (or ten =).
We still are selling t-shirts/tank-tops and soon we'll have some pawprint totes with TND monogrammed on them... so cute!
We will be looking for auction items for the auction at the fundraiser. We had such a great time last year with that, but I do believe we'd like to keep the item number total down a little this year. But, if you have anything that you could donate that you think would be worth auctioning off please let us know!
Okay, so I think that about covers it for now (probably not but my fingers are tired and my brain hurts and my children are feeling neglected), so I better conclude this post for now.
Hope this post found you all happy, healthy and safe! I've missed writing these, I'll try to be better about keeping you all updated!

Love,
Carolyn

Beauty is inspirational... so is determination.

2009-03-26T01:05:00.001-05:00

As said in the title...

Beauty is inspirational... so is determination.

To those who know "beauty"-- however it is that you think of it-- you know what it is to look at something so beautiful, so exquisite (sp?), so unreal in it's significance that you can't help but stare.

But what about those of us who pass it by?

What about those of us who forget to look for it?

How bout those of us who even take it for granted?

I have a friend... who has a blog. She has written of our family and our situation before. I will be anominous in this post as to who this family is, although if they read this they will know EXACTLY who they are. These are people, who I consider GREAT friends. The woman especially, but the entire family brings a light into this world that is absolutely blinding.

Here's their story.

They have a daughter, let's call her Cass (for Pete's sake, I'm trying!). Anyway, after they have her, they decide to have another addition. Problems occur. Fertility issues. No explaination. Doctors, testing, procedures.... nothing.

They decide to adopt.

Internationally.

Not long into the adoption process, not long before the scheduled trip to meet their new little one, they discover they are pregnant.

This, by the way, is during and shortly after the birth of Emi (7yrs. old).

This, by the way, is in the wake of 9/11.

In 2002, the news comes that they are expecting as well as in the process of adoption. Typical story as I've come to understand. They are to go greet their A-girl (as this friend puts it) in Nov. or Dec. of '02. They are due with the unexpected little one in Feb. '03. Dad goes to get little Miss A. During the trip, Mom delivers a still born little boy.

Wow.

Is that enough to break your heart? Can you imagine the anticipation of greeting the child you've longed for at the EXACT same time you're grieving another child you've longed for? I'm sure some can, but I digress.

Moving on....

Then in April of '03, Mom discovers that miraculously (lighting striking) that she's over 3 mos. pregnant.

Jeez... Can you say Whiplash?

She delivers a healthy baby boy in Oct. '03. So, their "little" family grew from 3 to 5 in less than a year.

They decided they could give even more to another child. Along comes another beautiful, adoptive daughter-- Miss J, less than one year younger than her big brother. (Maybe even less than I can remember)

You'd think they're set, they're done, they're busy enough....

NOOOOOOO!

Mom surfs around on familiar website for international adoption. She find this little boy, who is on the "special needs" list. Only because of a cleft palette, that's been worked on. She see's beauty in him and she can't bear to "close" him off the screen. Dad comes home and sees him and pretty much feels the same way.

Here comes #5!

Little C-Man joins the crew.

This family graces my life with their very being. Every one of these children hug me when they see me. Every one of this family lights up my day when I see them. And I cannot even tell this story without telling you that every one of this family has given me something... whether it's a picture they've drawn, brighter days when they smile, advice when it's needed most, inspiration when things seem their worst... the list could go on.

My point with this blog, is that no matter what YOU find beautiful in life... nothing compares to family.

Those amazing children whom this family took home ARE beautiful. That little C-man, who was on the "special needs" list was so beautiful that his meant-to-be Mommy could not turn away. Even when others would because he wasn't "PERFECT".

The aspiration this family had to keep going and build a family after tragedy struck and despair reared it's ugly head, is inspirational at it's least.

I have met many people in my life who struggle with infertility, some of those are dear friends. But that in NO way means that you can't have a BEAUTIFUL family! We all will get to the same place in the end... some of us just may take a different road.. the "Road Less Traveled".

My experiences in life are, by no means, UNTRAVELED. But they are "Less Traveled".

I try each day to see the beauty in my life.

I strive to be a better mother, wife and person mainly because of stories like I've told in this post. I want what I do to be important, not only to my own life but to those around me. I'm inspired by these stories of overcoming the odds. I'm inspired to help build the next generation, regardless of how it's achieved.

I look at struggles other have overcome and the blinding light that can shine through all that.

Everyone of us can make a difference, can make a life better, can leave a foot-print in the sand.... all if we think we are worth it.

As a mother, I spend most of my life doing things for others. Not only in my "motherly" life, but also in my career. I am always doing things to make OTHERS happy. But the truth behind that, is that IS my life. That's who I am. So, because of these people I know who have struggled with situations I have not, I am determined to make the best of mine. Craig will I'm sure be part of that with me.

Sometimes when things look desperate or depressive, I would like to think that God has given me a different path to follow on my way to heaven.

Doesn't matter how I get there.... just that I do.

Love to you all!!!

-Carolyn

Sorry it's been so long!!!!

2009-03-08T11:12:00.000-05:00

OMG, can I just start off this little blog by saying-- I completely squished my resolution to be a better blogger. I just haven't had the energy to still down and think of what would be interesting for you all to know about, although there is quite a bit... I've procrastinated long enough, get some coffee, go to the bathroom, find a comfy seat..... this might take a while!

So, first off, Nate Update:

Nate is doing really great with his cochlear implant-- I still don't know what the outside piece of the device is called. Everytime Craig and I are talking about it, the name of it is different everytime. Sometimes it's "Where's Nate's cochlear thingy?", or maybe "Nate's implant thing needs batteries", I have said, "Have you seen Nate's ear?" Whatever, we always know what we mean. Anyway, he really seems to be noticing sound. Again the difficult, frustrating part is that it comes off ALL the time. We went in to the Midwest Ear Institute last Friday and they did some more programming. There are 12 electrodes in his ear, they only have electrodes 1 thru 7 on, mainly because we're not sure if 8 thru 12 are doing anything for him. His responses to sound are really hard to judge and we were certain that he was getting the first seven electrodes, but not so certain of the last 4. So, it makes sense to turn those off until his responses are easier to read. We have a gal named Terese helping us out at the Britain Center. She comes in during his physical therapy with Mo and will work with him. One day, we went into a small room (a storage closet actually), and kept all the sounds to a bare minimum then we would bang a drum or something just to gage his response. We also sang to him. At one point, Terese and I were singing "Twinkle, Twinkle" and he started almost yelling. It was as if he was singing with us. Or.... maybe he was yelling for us to QUIT singing. Either way, we knew that he was responding to it! Very exciting!

I haven't been to his baby class at the Britain Center (IDC) in a while, Craig's been taking him. But he's really showing off for them! If someone says, "Hi Nate" he'll kind of vocalize back (in a way). The more that happens, the more I believe it isn't a coincidence. Also, he gets this little half smile that used to only happen when he was having a siezure. It's not that big baby smile that you imagine a baby having, but it's better than him there with his mouth hanging open and his tounge out. He's cute either way, but you know what I mean. Once a month or once every other month, there is a parent pow wow during class. The PT's and OT's will come and hang out with the babies, while the parents and the director of the school will have a sit down and just talk. Really, it's a chance to tell your story, or vent, or ask questions, maybe even a chance to just be with other parents that have a child with special needs. I have never been able to go to one of these. They seem to schedule them on Wednesday when Craig doesn't work, which then means I'm working. Craig wishes that that wasn't so, he's always the only guy there. Last time he went, we had both been struggling a little mentally with Nate. In class, we are surrounded by other babies who have brain damage and some with down's syndrome. Other than the baby (she's only a few months old), Nate is the LEAST functioning kid in class. It's so hard to try to have fun when you're trying to find the best position for him to practice head control, hold his head so it's not flopping all over the place, keep his implant thingy on (or continue to keep putting it back on), help him participate (holding shakers for music class).... just all of it. Then you're looking around at all these other kiddos who's moms are interacting with them, the children are clapping, waving, smiling, participating. It's hard because I try to remember that Nate is doing AWESOME.... for Nate. But when I look around at these other kids, it reminds me of the level of damage his brain has. I try to think of the things he can do that the others can't, but the ONLY thing we can focus on is that HE can eat solids. Some of the others can't do that. So, we had both been feeling that discouragemnet within our hearts. Then at this parent pow-wow, one of the newer moms (whose baby has Down's) mentioned how before she came to IDC she used to feel so bad for what was happening with her daughter. She would compare her progress with other children and be discouraged. Through tears, she said that now being here, she realizes she didn't have it so bad. She felt so bad for us and some of the not higher functioning kids, because of what we had to, and are currently, going through.

Wow.

I know all this came from a good place in her heart, but when Craig told me about this, all I could think was "Well, I'm glad we can make you feel better about your situation." I'm so tired of that.

I'm tired of people not feeling like they can't express their worries, frustrations, problems with us because "it's not anything like what you guys have had to go through". I guess it just depends on the day of how I react to those kinds of things. I don't want people to feel sorry for us anymore, or tell us how strong we are. I just want to be normal, or normal for us I guess. You know, I used to be one of those people who looked at situations like ours with other people and be sad for them. And think, "Gosh, that's awful, I'm glad we don't have to go through that". It's really one of those count your blessings kind of things. I guess what it really all comes down to is that the biggest problem in YOUR life is still (no matter what else is going on with other people) the biggest problem in your life. Everyone's entitled to feel sorry for themselves for something not going the way you hoped. It's OK to be frustrated at your own problems and tribulations. And after you're done with your pity party, you can look around and realize things could be worse.

I've done it.

I did it at the hospital when Nate was in the PICU and hearing stories of other kids dying or having chronic health issues. At least Nate was getting better health wise. We knew that if he pulled through, we would have no "health" issues. Mainly what we would deal with would be his brain injury.

I did it when I was poking around on the internet for other stories or parent of kids who had meningitis as an infant. I wanted to find a story just like ours, and see how it turned out. I ran across some whose babies did not survive. At least I could still hold, kiss, smell, experience my baby.

Everyone's situation is different and everyone reacts to loss or tribulations differently. I can only express how I deal with loss or tribulations. My way isn't the way everyone would deal.

Moral of this story is that, yes-- I feel sorry for myself sometimes, then through the wheel of the world I realize that I should actually be feeling lucky for myself. But, EVERYONE has problems. Some are trivial, sure... but they are still problems. I'm sure anyone could find another person whose been through worse than they. That's when you can feel better about yourself. I think that's one of God's great gifts to us. The Wheel of the World.

Ok, so that's that.....

What else do I have to say here?

We have some stuff to announce regarding our TND fundraiser in Sept. I will figure out some details and will post on that VERY soon, I promise!

OH!!!! I almost forgot! Nate can occasionally lift his head up when he's on his belly! If his arms and elbows are under his chest he will lift his head and turn it.... I had Emi take pictures, here's some:

And here's some just for fun...

So, I leave you now... after much rambling and aims at thought provoking-ness. I will try to be better about the updates people! Thanks for being so supportive still! You all rock!

Love,

Carolyn

Can you hear me now???

2009-02-06T08:32:00.063-06:00

So, if you're my friend on Facebook, you might have notice the status updates mentioning Nate got his external part of the cochlear implant last week, and it seems to be working! I'm sorry it took me so long to get a blog out for this, but it's been a little busy around here lately.... not that it isn't that way on a normal day, but you know what I mean right... right?

Nate got the "processor" part of the implant last Thursday (Jan. 29) and they did the initial programming. The ENT told us that he was able to get all of the electrodes in, so that will provide optimal stimulation. The technical part of all this is head-spinning, so I will explain this as I can understand it. Each electrode is programmed with a different stimulus. They test each one, and check for nerve response and also physical response. Now, Nate has significant brain damage, so his response isn't like a child who's just DEAF. We would watch Nate during the testing and it SEEMED like there was response. He would maybe blink at the extact same time everytime, or he seemed to move around more during the testing. I was wondering if what I was seeing as response was just my imagination, wondered if I was generating his responses in my mind. But, I WAS seeing something.

So, we took him home and then took him back the next day and they did another programming. The audiologist thought she was seeing a little response as well. Maybe, she just was getting used to Nate now and knew how his responses flowed. I don't think she had ever worked with a kiddo like Nate before, so this was new and she relied on US a lot to tell her if we thought he was uncomfortable with the levels or not. But there was also two other ladies in there to witness anything as well. So, between all four of us... we felt really good about his reactions.

This week, we just focused a lot on talking to him, singing to him, pretty much bombarding him with sound.

The most annoying thing about this device, is that the magnet that attaches to the internal magnet comes off ALL the time. Since Nate doesn't sit up, he mostly reclines or is laying down unless we are supporting him. So, the second he turns his head to the right-- the magnet pops right off.

When we are feeding him his food with a spoon in his high chair, he's constantly turning his head back and forth, so we stick it back on everytime we notice it's come off. I think how messed up would that be to have sound- no sound- sound- no sound. I tried it with my IPod, it's dizzying. Try full on sound, then hit mute, then sound again. Can you say VERTIGO? Yowza!

Well, we will try to work on keeping it on better, it's just hard.

So, Craig took Nate yesterday back to MWEI and they did another programming. And there seems to be even more and better response! Terrific! We are very happy with that!

I have to confess though, we are supposed to work with both the cochlear and his hearing aid on at the same time! I HATE that hearing aid! We've had two ear molds made and neither of them fit very well, so it would whistle everytime he made a move. We are waiting on yet ANOTHER mold to come that hopefully will fit better. It's such a shame that we spent so much money on this thing and he hardly ever wears it. It actually makes my stomach turn a little bit.

Well, in TND news... we got our first load of sweatshirts in and they are awesome! I wear mine everyday, in the morning when I wake up. It's sooooo warm! If anyone would like one, either contact me because I have a few of each size here at the house, or you can email Carrie and she'll order you one!

We are planning on doing the Meet Nate Day at MAM fundraiser again this September and like I've said before, we are wanting to do it on a Saturday. Since we already did this once, we think this next one will be even bigger and better! And we have some REALLY COOL things in the works for that! I will have some news about that hopefully soon! Oh you just wait people.... it's gonna knock your socks off! Also, we are planning a Firehouse Chili Cookoff for May (hopefully) and once we get some more details ironed in for that, I'll let you know!

We've been laying low for a while, but TND is kicking back into gear! We are ready to jump start some charity PEOPLE!

Okay, well I must be off to feed the Nate Dog himself.

Love you all!

Carolyn

What kind of a "blogger" am I???

2009-01-21T08:47:00.000-06:00

Hey there all you faithful TND-ers! I have become such a bad "blogger"! I am sure, those of you who try to keep updated with us, are tired of coming to the site and seeing the same old post as two weeks ago. My New Year's resolution (ok so it's my Jan.21, 2009 resolution) is to post at least once a week. How's that? I will dedicate my time to unloading my thoughts, stresses, worries and boredoms on to all you fine people! God love ya!

Anyway, Nate News:

So, Nate is doing amazing! His surgery went very, very smoothly. Once he woke up and was "with it" again, I was able to feed him his dinner and then a bottle. The nurse had come in and asked me if I wanted him to have any pain meds since he was eating, and I said, "Sure." So, she comes back and starts to squirt the medicine in his mouth, which he dutifully swallowed, and I asked what it was. She said Tylenol.... with codine. Ha, ha... I didn't know they even gave one year olds codine! I wasn't opposed to it, I didn't want him to hurt, but I was surprised at the medicine. I guess I figured they would give him Motrin or just straight Tylenol. Then I was glad that I HAD fed him, because I know what codine can do to an empty stomach. He felt asleeeeeeeeeeeeep (emphasis on that word, of course) around 7pm and was out!

The night nurse and Care assistant would check on him every few hours, not that there was anything to check, he hadn't even moved. But at around 2:30 am the night nurse woke me up and said she would like to suction him out. He had a bit of a cold with a tiny cough, which we were used to and honestly, not terribly concerned about. He has had this type of cold/cough thing before and even though we do EVERYTHING that you can do at home to alleviate the symtoms, nothing ever seemed to make it that much better. Just time. We had even been given a nebulizer and Albuterol once. (again, that never seemed to be the ticket either) So, I was a bit pleasantly relieved when she said she wanted to do a little tube suction. Poor guy, as asleep as he was, we had to wake him up gingerly then she sticks this tiny tube down his throat and up both nostrils-not at the same time mind you- and I would say.... THAT woke him up! But it did clear him pretty good and then he was WIDE awake. So much for a good nights sleep, for him or myself. I decided to feed him another bottle, simply since the only time he ate on Thursday was his dinner and a bottle at around 5:30 pm. Well, he had a bottle and promptly fell back asleep. That's ma boy!

We woke up the next morning and ordered him a feast of baby foods, oatmeal, pancakes, scrambled eggs... I figured we might as well try, since we were there and the food was "free". He ate like a Zeller man eats. He seemed to like (or not hate is easier to tell) all his fun new foods.

We got discharged around noon and have been home ever since.

The swelling is pretty much gone and he doesn't seem to be in any pain. We go back to the ENT on Friday to have the incision checked. I think it looks good, but what do I know? All I can tell is there's no redness or oozing from the incision and he doesn't seem to be bothered by it. Sooooo, I think that's a good sign.

Then at the end of next week, we will go to the Midwest Ear Institute and have his initial stimulation/programming done for the outside part of the cochlear implant. If you have no idea what I'm saying, then you must realize that the implant has an inside part and also an outside part. One doesn't work without the other. The outside part is the "computer", the thinking part of the implant. This will consist of a magnet that will be placed over where the implant is in his head. The magnet has a wire that comes from it to the computer. That will either be body worn or over his ear (like a hearing aid). I think we are gonna go with the body worn for a while, simply because he doesn't sit up. Nate's always reclined or laying down, so having it around his ear, plus the hearing aid on the other side could be a little much.

Well, here's where it gets tricky. I think I've said before that this is not a gaurantee that Nate will "hear". He will have "nerve response". Now, if his brain was perfectly healthy and had no damage, then that "nerve response: would be all he'd need. Of course that is not our little Nater Tot. So, fingers crossed that his brain can interpret the sound accordingly. He will have a few stimulation programmings, and then we will do some auditory training to teach him to hear. I have faith though, that even if it's not right away, that he WILL eventually benefit from this. I hope he can experience this world through sound.

Nate has gotten very mobile with his arms lately. He's also been opening his hands all the way. He used to always be clamping down on his thumb with his other four fingers. Now, he has an opposible thumb! HA HA! He's still my little monkey though.

He also looks as though he could roll over. He cranks his head back when he's laying on the floor and brings his arms to that side. All he would have to do after that significant (for him anyway) move, is get his legs over. We're working on it.

Nate is also trying to cut about 6 teeth right now. Since he doesn't chew, he's not cutting the teeth though on his own. His poor little gums have been swollen for weeks if not months. I will use a cold wash cloth to rub his gums and it's absolutely heart breaking to see his look of pain. It's the ONLY time that he has looked like he was in pain since May 10, 2008. I keep thinking maybe it will trigger a cry, but I'm trying not to be sadistic about rubbing his gums or anything. So, anyway, he has his two bottom teeth in and now the ones trying to move through are the top two (one has broken the surface), then the two on either side of the top and the other two on either side of the bottom. I imagine what that feels like for a kid who's not brain damaged and I guess in a way both relieved and sad that he doesn't seem to feel it (unless I'm scrubing a rough wet wash cloth on his terribly sensitive gums).

Well, today is Wednesday and I'm going to be running like a crazy person for the next 7 hours. Wish me luck! And I promise to be better about postings and keeping up to date!

Love you ALL!

xoxoxo

Carolyn

Nate's Cochlear Implant Surgery

2009-01-15T15:41:00.000-06:00

Hey there everyone! Just wanted to pop in a note here for anyone who's interested in knowing how Nate's Surgery went.

Everything went really well, the ENT told us. He was able to drill through the little bit of bone oxification that had grown, but didn't show up on the CAT scan. So, also he was able to then feed the entire wire with all the electrodes into his cocheala. That's awesome news!

He has been in recovery since about 1:30 and now we sit in his inpatient room here at CMH. He has a VERY padded right ears with a ring of gauze encircling his sweet little head. He is randomly opening his beautiful blue eyes and his daddy is cuddling him right as I type this. We will try to give him some water through a bottle here shortly and as long as things go smoothly, we will be outta here tomorrow.

Thanks for all the prayers people! This little guy IS a fighter, we all knew that.... but the prayers DO help... that much I am sure of!

Thanks,

XOXOXOXO

Carolyn

Nate's ONE!

2009-01-03T14:58:00.001-06:00

Well, he made it. Or should I say, WE made it! The Nate Dog himself is ONE! His birthday was yesterday (Jan. 2), and he had a great day. He did get to have some cake! I think after the intial shock-face he had with getting a new flavor and texture, he did start to figure it out and like it! Of course, he didn't dive into it as most one year old's do, we did let him smear it on his face and in his hair, just for tradition sake.

Just a few snap shots to show off the birthday boy!

We had a meeting yesterday morning with the ENT and the Midwest Ear Institute about Nate's upcoming Cochlear Implant surgery. He will be getting the implant on Jan. 15. It's a overnight stay, simply for observation, which I'm relieved about. We also found out that Children's Mercy will be covering the implant and the surgery. We applied for financial aid through CMH and this will be covered! Happy Days!

We had a wonderful holiday, and enjoyed watching the kiddos open all their presents. We tried to get Nate as many visually stimulating "toys" as possible. He did seem to response to a lot of them. Emi and Charlie had fun opening Nate's presents for him. They enjoyed every minute and so did we.

This is a new year, and TND hopes to get things moving with some fundraisers and things! We will keep you all posted with any upcoming news.

Hope everyone had a safe and exciting new year's and I personally can't wait to see what 2009 brings!

Love to all,

Carolyn

What's the news????

2008-12-14T23:15:00.002-06:00

Hey there fellow TND'ers! For those of you following, I have to say, I'm sad that you can't just get an email saying "Team Nate Dog has posted a new blog!" You can however grab the headline animator to see if there's new blogs.

What's going on with Nate? Well, little strong, powerful Nate Doggie has a new little something to help him experience this world. It's a hearing aid. When we first went to put it on him, he DID open his eyes a little wider. He DID interrupt his breathing. THAT, people was response. He didn't turn towards the sound, but there WAS a response that showed he noticed something. Wonderful, right???

Well, the ear piece is a little small, so when he turns just so... it whistles. So, the audiologist fit him for a new mold, hopefully that will fit him better. It's a little hard to figure out how to hold him just right so that it doesn't whistle, but I'm sure we will figure it how quickly after he gets the new ear piece! I'm still so amazed at how much this little "low end" hearing aid costs! $1300! Can you believe it? I ordered the ear piece to be somewhat camoflouge. It's mostly green with a few brown spots throughout. But, we are very conscious of keeping a good eye on it.

I remember after Charlie got his glasses, how concerned I was about keeping track of them. My nephews got glasses and couldn't same to hang on to them. I think that the difference was that Charlie wore them constantly, so they became a "part" of him. We haven't had a problem (knock on wood) for a few years now.

Well, this little hearing aid is MUCH smaller and he DOES NOT wear it constantly (mainly because of the whistling), so I'm so afraid of it getting misplaced. But so far, so good.

He will get his cochlear implant on Jan. 15. I'm very excited for that. Also, I'm a bit apprehensive after realizing how hard it is to hold him and all after this hearing aid business. The cochlear implant will obviously be on his right side, so all the effort we've put in to trying to keep his left side untouched will now have to extend to his right side as well. Since he doesn't sit upright, he's either reclined, or on the floor, on we are holding him. So, that leaves many times that he won't be able to have BOTH of these aparatises (sp?) on. HMMMMM.

Also, if things are going well eyesight wise, he will get glasses soon. How THE HECK am I supposed to have all of these thing on at once, to help him develop and experience the world around him??? I'm sure it's just anxiety that probes my brain right now on how I'm supposed to deal with that, but I sure am glad it's not a trachea thingy or a G-tube feeder! We really have it good, considering the alternatives!

Nate did get his 3rd HIB shot last week. That's the vaccine for pneumococcal meningitis. I really wasn't as nervous as I thought I'd be. It was just ONE shot. Although, the nurse that was going to give him his shot asked our pediatrician (who saw us walk in to the lab), if SHE wanted him to get the flu shot as well. Here's where my inner conflict rages.

WHYYYYYYYY would she ask the PEDIATRICIAN about that before ME???? Thankfully, the pediatician asked me before giving the well-meaning nurse the answer. Had Dr. Glotzbach said "Yes, he needs to have the flu vaccine, I believe he's at risk.", I wouldn't have argued. However, our amazingly compassionate dr. directed the question to me. She asked, "what do YOU think? What are you comfortable with?" I chose to have him just have the one vaccine. Maybe later, WE will choose to have more.

This brings me to a rant that I have mentioned to many people before...

I do NOT have a child who had a negative reaction to ONE shot or even TWO shots. I have a baby... who is nearly one year old, who at 4 mos. of age was subjected to 4 shots and one oral. Simply, because I didn't know enough.

Emi...

She was pretty much a non-event as far as shot went. The dr. told me what she was due for, I said "OK", they gave her some Tylenol and gave them to her. She was after that... sleepy with a few bandaids.

Charlie....

EVERY SINGLE TIME he got he vaccinations, he got an ear infection. I knew at them time that it was linked to his vaccinations, but I didn't realize WHY.

Nate...

Three days before he had SYMPTOMS of meningitis, he was given his shots. THREE DAYS! HMMMMMM.....

After the intial diagnosis, we pulled out that little pink card you are supposed to have with you and update ever single time you have him vaccinated. That same card that you have to copy and fax or mail to the elementary school your kindergardener is enrolling in.

That little pink card showed me exactly, as an uneducated parent as far as vaccines go, how many WEAKENED viruses were inside his body.

4 shots, one oral.

14 different viruses!

HOW ON EARTH IS A BABY SUPPOSED TO BUILD ANTIBODIES TO 14 DIFFERENT VIRUSES AND NOT BE VULNERABLE TO ANYTHING ELSE THAT MAY COME ALONG???

I am not saying that I believe, or not believe that vaccines are dangerous or that they GIVE children diseases. BUT, if does seem fishy that Nate was stricken with this VACCINE strain of menigitis so soon after being given the shot. I DO believe that the vaccines are there to help people. I believe that they were created by good hearted people intending to irradicate disease. I believe that pediatricians and doctors alike strive to help people and save them.

HOWEVER, I believe that society has created a business.

A business that wants to expel convienence on uneducated parents and care givers.

"Here ya go, here's a few shots that will save your baby from certain death if they DO NOT get these vaccines.

Save your co-pay! Get them all at ONCE! Oh sure, you may notice a fever, a hard red lump at the sight of the shots, maybe an ear infection."

And they always give you that handy dandy sheet that tells you when to call the doctor, or what to expect as far as side effects. How many of us really read those, or better yet how many of us really read up on vaccines in general?

I, after all this, would rather pay a ka-gillion dollars in co-pays than subject my child to that many vaccines rolling around in his body for 10 days while he build immunities to them. One at at a time please, for me.

The AAP has a letter, maybe many of you have seen while taking your child to be seen. It states that there is no scientific evindence that links vaccines to autism. That definitley seems to be the big one these days. It doesn't mention ANYTHING about the link to other sicknesses, like for one ear infections. Another... MENIGITIS. Or maybe even SIDS!

Anything that happens thirty days from aquiring the shots, is considered an "adverse reaction" and should be reported! That means ANYTHING! Ranging from an ear infection, to a sniffle, to a cough, to the worst case scenerio possible! These babies are born with there mother's antibodies. But yet that isn't enough to save them. They DO need help and protection. If you CAN breast feed, do it! If you can't, than figure out other ways to build immune systems! I'm not sure about those ways, but I'm sure there ARE ways. The one thing I AM sure of is that a 2 mos. old, a 4 mos old, or even a 6 mos old. does not have the immune system that can support 14 viruses and build immunities to them AND fight off impending, deadly, opportunistic diseases.

My advice is to pay the co-pays. Spread the vaccines out. Endure the inconvience. It may be worth it.

I never questioned the vaccines. Even after all the autisim stuff came to surface. I read some about Jenny McCarthy and what had happened to her son. I honestly thought, "Oh man, that is so sad.... I'm so glad that is us."

In the words of Jenny McCarthy, "ONE SIZE DOESN'T FIT ALL WHEN IT COMES TO VACCINES".

Why do all 2 mos. olds, 4 mos. olds, 6 mos olds, 9 mos and 12 mos olds. get the EXACT same vaccines? There has to be a better way! I know that nearly all of us have had children who haven't been affected by the vaccine crisis. But those of us who have, I am here to say... There HAS to be a better way!

If all I'm here put on this earth to do is to help mothers, fathers, caregivers realize that they DO have a choice.... then here I am.

No one ever said to me, "This is optional, you don't have to do this shot, if you don't want to do right now. You CAN wait and do it at another time." I would have thought about it.

No one ever said that.

No one gave me a choice.

I always thought it wasn't up to me.

And that letter... from the AAP made that indestinctly clear.

I DO have a choice in my child's care.

YOU have a choice! YOU have a voice! Don't doubt your intuitions! PUSH! Hear that voice inside that tells you to fight... or to question the dr..... or to do it your way! Obviously, hear common sense as well, don't put your child in obvious danger, but be smart. Know that you DO make the decision in your child's health care!

After everything that has happened with Nate, I know that WE are the decision makers. And if I don't like it, I will find someone who DOES feel the same. I WILL always keep my children's health at high priority. But I will NOT trust an intiution that I don't agree with! Mother's instinct IS a powerful thing and thank GOD there ARE people as well as doctors who believe that as well!

OK, so now that I've ranted and raved as much as these skinny fingers can type, I must leave with this one thought...

Know yourself,

Trust yourself,

Know your child,

Trust your instincts.

Love to all,

Good Night!

Carolyn

Squeals & Smiles?

2008-12-04T09:29:00.000-06:00

You know, since all this happened with Nate, the only time he would ever make a sound was when he was having a seizure. Lately, he's been very vocal... but it doesn't look as though he's having a seizure. I don't know whether to get excited about it or not. Isn't that stupid? Everytime there's good news with Nate, I seem to be very cautious with my joy. It seems that when something is going well and we feel as though we are finally getting on track and progressing, something happens.

Another exciting moment, but again, I'm not sure what to think really. The only time Nate has smiled since May 10, 2008 has been during a seizure. So, it's not a "real" smile. It's not as if you can smile back and get a reaction. Well, yesterday, Nate had his baby class at the Britain Center and during swim time, his PT was holding him and I had a pinwheel that was shiny silver. I would spin it just to see if there was a visual reaction, a blink, a look of focus.... whatever. What happened next I wasn't quite prepared for. He smiled.

Not a giant happy smile, but more of a half open mouthed smile. His eyes looked a little heavy, but not like they do (or did) when he's having a seizure. Mo was very excited about it. I just kind of smiled and said, "Yeah, it sure does LOOK like he's smiling". Well, he did it about 1-2 more times, then we moved on to something else. About 5 minutes later we tried it again and sure enough, he smiled that smile again. My heart sang, but my head wondered if this was just a seizure. I used to be able to predict the entire sequence of his seizures. Now, they are different. He definitely doesn't have the myoclonic jerking were his arms would shoot above his head and his head would lurch forward and his knees would come up, but there are times you are positive he's not there. Like he's seeing a different world and you're not in it. Then there are times when these amazing things happen and I should be very excited, but I'm just not sure why these things are happening. Can't I just be happy? Am I turning into such a pesimist that I can't even accept these events that ALL babies should do?

Maybe something is triggering in his brain, but maybe not.

I wish I knew.

On the cochlear implant situation, Nate is scheduled to get it on January 15. I'm not really sure if it's outpatient or what. The gal at Midwest Ear Institute mentioned to me, one of the risks of a cochlear implant. She almost shuddered to tell me.

Meningitis.

MENINGITIS????

Apparently, with the wires being fed into the middle part of the ear, there is a risk for infection that could travel to his meninges (the fluid around the brain that when infected is meningitis). So, she mentioned that he should be all up to date on his vaccinations.

I raised my shoulders and shook my head.

"He's not."

"He hasn't been vaccinated since 3 days before he GOT menigitis!"

Our pediatrician has always been very compassionate and understanding about our fears. Here's a baby who just had a severe infection around his brain and heavy duty antibiotics. He's at risk for pneumonia do to possible micro aspiration. I KNOW I don't want him to get all the shots they give babies at their check ups. He hardly has an immune system at this point and he's NOT getting 14 different weakened viruses put inside his body. For all we know, that is the very reason he got sick in the first place! AND the meningitis vaccine is a SUPER vaccine that has 7 different strains of pnemococcal meningitis in it. Nate had one of those strains!

I'm not sure what to do. I need to pray on it. But sometime before now and Jan. 15 I need to figure it out!

Please pray for God to send me a sign.

On another note, Nate had a Christmas program for the Britain Center last night. As I've mentioned before, Wednesdays are crazy days. We ended up being late, they wanted us there at 6:15 and the program started at 6:30. I knew I wouldn't be there at 6:15, but I was hoping to get there before 6:30. Well, after parking and walking in with three kids all by myself, I heard jingling and them singing Nate's Christmas song. I immediately teared up, we had missed it. I sat down and just cried. Then of course, Emi started to cry and Charlie hugged me. We decided to leave, I felt ridiculous. I had Nate all cuted up and now we were going home. In many ways, I felt like I screwed everything up, like I was a failure. I know Nate had no idea and it wasn't bothering him to not be in the program, but I was just heartbroken.

It was just one of those days, I guess.

Well, I must log off now and get going to work.

Love to all!

Carolyn

Cute Siezures???

2008-11-24T14:37:00.000-06:00

Here's a question you don't hear everyday... how can a siezure be CUTE?

Well, if you spend enough time around our boy, you would see that he is actually very, very cute when he has a siezure. It's the weirdest thing. Here he is, brain spazzing.... but he is talking and staring wide eyed and alert while he's having one. So many people, when they see this, think Nate is actually talking to them. Maybe he is, but I find myself biting my lip and saying, "Yeah, well ya know...". But anyway, that's the question of the day lately, how can this sweet angel who's cute constantly anyway, still be cute during neurological duress? It's crazy.

Well, since I've posted last, Nate had an EEG. He only had one siezure during the test, and the tech that did the test asked me after all was done if that was one. I told her yes and she said she wasn't sure, so she had to ask. I guess that's a good sign, maybe the spikes on the grid weren't to high or something. Then Sunday, the neurologist called to tell me that this EEG was significantly better than the last one in September. The test in Sept. was rated, in his opinion- on a scale of 1-10 (10 being the worst rating)- a 10. After that test, we added the Topamax med to Nate's daily meds. He is up to 125 mg 2xday of Topamax and 45 mg 2xday of Phenobarbital. Then, after this EEG, then neurologist rated this one around a 6. So, that's good I guess. He asked if we were happy with where he was siezure wise. Did we want to try another med? I really didn't know what to say, I was kinda like, "uh---well, I don't know. What do you think?" Now, our neurologist has a really, REALLY hard time answering a question with a quick answer. He always seems to extend the answer so much that you actually forget what the question was in the first place. So, I guess somehow, we decided to try to add another med and see if we can get Nate siezure free. My main concern is that he's not so doped up that he can't do anything. Keppra was the med he wanted to try. We would start with a half a tablet (125mg) twice a day and maybe go up after a few weeks. I filled the prescription, and stalled on giving it to him for almost a week. I was afraid of another med. The last "new" med we tried knocked him out so bad it was scary.

I decided to try to find some more answers about Keppra, maybe someone out there could give me more of a straight answer than what I was getting from the neurologist. I posted on a website for parents of children with epilepsy and one response I got was that we should consult with an epileptologist. A dr. who specializes in siezures. So, I found a pediatric epilepsy center in St. Louis and am in the process of trying to get Nate an appt. to be evaluated there. I do not believe that our neurologist is stupid or ignorant about the meds he's prescribing, I just felt as though it was time to have a second opinion weigh in. We will see what happens with that.

So anyway, I did decide to give Nate the Keppra and he's not knocked out. His seizures are not lengthy at all anymore, but do seem more frequent. Not really sure where to go with that. At the end of this week, we will probably go up to the full tablet of Keppra.

Nate got fitted for his hearing aid for the left ear. He will get that next Tuesday Dec. 9. I'm looking forward to seeing if that does anything for him. I'm still waiting for someone to call me to schedule the cochlear implant surgery. Maybe, I oughta take it as a sign that I should call them and see what's up. HMMMMM.

With Thanksgiving around the corner and the holidays, we are going to be incredibly busy. But I will try to post as much as possible!

Love to all!

-Carolyn

Cochlear implants... here we come!

2008-11-15T08:34:00.000-06:00

So, Nate had an evaluation at the Midwest Ear Institute last Monday (the 10th) for cochlear implants. We've decided to go forth with one for his right ear (the profoundly deaf ear). And we fit him for a hearing aid for his left ear. That ear still has some nerve response at this point, so we will try that. Unfortunately, we will have to be paying for most of this without help from insurance. Apparently, Coventry doesn't cover anything to do with hearing aids or cochlear implants! Bummer! I will start the process of filing for medicaid for Nate very soon, hopefully that supplemental insurance with help. All this fundraising has really helped out sooooo much, but I hate to dip into it if we don't have to! But it IS there.

Anyways, funny story about how stupid I am! HA HA HA! Ok, so Monday was to be a crazy day. Emi goes to school at 8:10, Charlie goes to preschool (clear across town) at 8:15. Then I come home, drink coffee, check email, feed Nate, get clothes for the day on, start laundry.... then on to pick up Charlie from preschool at 10:45. Then we go straight from there to Dr. Grin's for Charlie's Opthamologist appt. After that, we have lunch. At lunch, was when I discovered I had completely forgotten Nate's diaper bag! I had nothing! He needed to eat, have a diaper change... I threw my hands up and smacked myself a few times to try and rearrangement the dumbness! ARG! So, obviously, I had to stop SOMEWHERE and get the essentials for Naters! This meant bottle, burp rag, diapers, wipes, WATER (for Pete's sake). Before you know it, I've spent $30! Ok, so then we had to go to 31st & Broadway for Nate's evaluation. The ENT had given me a card for his other practice (away from CMH) and wrote "Midwest Ear Institute" and the phone number on it. So, I had made this appt. and went to the address on the card. I was so proud of myself. Anyone who knows me, knows that "on time" for me is about 15 late. So, I was doing AWESOME, because I was actually on time (which of course is EARLY for me). I then wrestled Nate's gigantic stroller out, get all the essentials (diaper bag goodies, but with out the diaper bag), blanket, Charlie with a coat, purse, phone... all CHECK!

There was no Handi-cap elevator from where I was to the entrance, so I had to walk clear through the garage to the entrance. "Oh well" I thought, "I'm early it's fine". We walk in, up the elevator to the 5th flr, find the suite we needed to be at, walk in and check in. The gal at the desk looked confused.

Newbie I guess.

"Nate Zeller?"

"Yeah..." I prepared for the whole someone messed up your appt.

She said, "Is he supposed to be at the Midwest Ear Institute?"

"Yes."

"Oh that's not here. This is Dr. Thedinger's practice. Here's where you wanna go."

So, she starts to write down the ADDRESS for me! I stood there like...."WHA.... you mean it's in a different building?"

Apparently the card Dr. Thedinger had given me was obviously not the right address to go to.

So, down we go to the garage, back through the garage, back into the van, unload the stroller and pack that up. Onward HO.... about 11 blocks away! Then we I finally find the place, parking was an issue! Found a spot, re-wrestle stroller time, all that. Walked in and sure enough, was about 25 minutes late!

After the evaluation, which really was just talking about what the implant is and looking at different companies devices, did a little hearing test, talking about where we go from here. Then it's over and it's time to leave. Guess what time it is? 5 pm. Time for rush hour! And I gotta be in the midst of it! I had to go pick up Emi from her friends house!

It was just a very busy day!

Seems like those days come more and more frequently lately!

Well, no real words of wisdom today.... I'm exhausted! Maybe next time! Love you all!

-Carolyn

Sometimes I forget...

2008-11-06T15:57:00.000-06:00

Honestly, I have to admit, there are days where I forget how lucky I am. On the surface, I do remember. But deep down I'm extremely tired, angry, confused, indifferent. The fact that I have this beautiful family, amazing friends, a warm home, a career, food on the table.... it gets all warbled up in my grief sometimes.

Then, miraculously, as if GOD sees this, I find signs. Signs that bring me to the realization of my significance. The reference of hope is sent my way.

I have recently been bouncing around on the internet, looking for other mothers who's children had meningitis. Other than Dani and her little guy Logan, I haven't really known of anyone else. So, I found the motivation to search for some. And I found a few. Hearing stories of children who as babies had meningitis, and their abilities to this point are hopeful. That gives me strength. To hear of a family who lost their little one to this horrific illness, reminds me that I AM lucky. I can still hold and kiss my baby. No, he may not smile at me or even reach for me, but he's here.

I have two beautiful and angelic older children who light up my world with their smiles. They love their mommy and daddy and fight over who gets to kiss Nate first. I have a husband who, everything he does, he does for us. His strength is my rock. My home is not falling down, it's secure and warm and shelters us. It's our place where we live, laugh and grow together. My career is my hobby, I love what I do. How many people can say that.... not enough I'm sure.

These "things" are what really matters. The fact that God put us into this position with Nate and the struggles that come with.... it will make us stronger as a family and as people.

Sure, it would fantiastic to have relatively small issues to deal with, but THAT is NOT my life. I have to push forward and try to make this all better in whatever way I can. If it's even just getting the kids to the park or the library, or making sure I get quality time with my husband or my friends, or working out in the yard so my husband doesn't have to do so much out there.... what ever.

I'm so glad to have a place where I can unload my thoughts and I truly do enjoy hearing your thoughts back. But really, this is an opportunity for me to heal and I hope that doesn't seems selfish.

Enjoy the Halloween pics, we had fun.

Love Carolyn

Nate and his progress...

2008-10-30T10:09:00.001-05:00

Nathan Matthew... progress... what that means...

Everyday that Nate gets through is progress.

Everyday that I get through, I believe is progress for Nate. Days that go by without progress are not happening. The progress Nate makes is very, very minimal by many accounts. But, each day that passes without regression... that's PROGRESS!

I'm so sorry that I've been lax in the "updating" department. Here's the latest.

As you may have read in previous posts, Nate has severe and profound hearing loss in his right ear. That means completely deaf. Now, his left ear has "only" severe hearing loss, not profound. So, that's hopeful. The ENT we met with last Friday suggested to go ahead with the cochlear implants process. This will involve evaluations and different testing before the actual procedure. From what I understand, there will be a "wire" fed into his inner ear (the cochlea), that will somehow send the right impulses to stimulate the nerves that are not responding. This is not a "guarantee" that he will hear. But it's probably the best shot that we know of at this point. I'm not sure if they will do both ears or just the left. Hopefully, the healing his brain is trying to do (in between almost constant siezing), will be able to interpret the "sound" and deliver the messages. We had a CAT scan of Nate's temporal lobes done just after the ENT appt. That should show if the cochlea has any bone matter in it. The ENT mentioned that occasionally, they won't see it on the CAT scan, but when they go in to feed the wire, they meet resistance. So, fingers crossed people! He has his first evaluation with the Midwest Hearing Institute on Nov. 10. Unfortunately, we also found out that our insurance has an exclusion for all that has to do with the implants. So, that will be all "out of pocket". Yuk! But what needs to be done is just that. It needs to be done. It's worth a try. I want to give this sweet baby every chance possible to experience this world. What ever I need to do will, without question, be done.

Meanwhile, Nate's vision does seem to be improving (minutely) every week. His opthamologist mentioned that if his vision is continuely improving by the next time she see's him, we might go ahead and get him started with glasses. Can you imagine??? How cute will he be? I thought Charlie was cute with glasses. I thought Nate couldn't get any cuter. I think I might seriously explode if he does. I mean sometimes I really need to stop myself from squeezing my adorable, cuddly baby too hard! I almost can't help it! He makes me giddy! And I think he just might be the most kissed baby EVER!

Nate's siezures have changed a bit. This is pretty much the sequence of his siezures that we see:

1. Staring off to the lower right

2. Tounge thrusting

(usually this happens for a few minutes, so sometimes we don't time it until....)

3. A myclonic jerk, his arms raise up, his head lurges forward and he brings his knees up.

4. Then his eyes get really wide and his seems VERY alert. (but really it's electrical surges throughout the brain)

5. He might have a few of the jerks for about 3-4 minutes

6. Usually, he then reverts back to the staring and toungue thrusting for another few minutes.

So, for a total of maybe 10 minutes his has this siezure.

Now, they just upped his phenobarbital again to 45 mg 2x a day a week ago. We were to do this for 2 weeks and see how that went.

Since, Monday Nate's siezures have been longer, but without the jerks. He definitely doesn't seem "with it". So, we called the neurologist yesterday after we went ahead and gave his his Diastat (rectal valium). When they finally got back to us, they decided to try some other medications for this weekend only. I'm not sure what they are, I need to go pick them up today. He has an EEG scheduled for Nov. 14. I wish we could do it earlier, but I guess it's only 2 weeks.

Here's some Team Nate Dog news...

we are very excited for the next year! We plan to do plenty of fundraisers and hopefully find a kid or two to be able to help. Crazy Aunt Carrie will be heading up the foundation and with the help of her awesomely smart husband Erin, determined and protective dad (Papa Ken), myself and Craig, and many, many handy dandy friends (you know who you are!), we hope to make this BIG! We have plans for fun, fun ways to raise money! But what we really need is just support and prayers! The foundation of this foundation is LOVE! What every you can give is very, very much appreciated, but all we really want is to help make this world a better place. And to help families with children who have brain injuries not be scared of their financial woes.

Pass it on!

Thank you all so much for reading these posts and always sending your support our way!

I can't wait to sport my brand new Hoodie soon! Wink, wink!

Love,

Carolyn

Nate and his progress...

2008-10-30T10:09:00.000-05:00

Nathan Matthew... progress... what that means...

Everyday that Nate gets through is progress.

I'm so sorry that I've been lax in the "updating" department. Here's the latest.

Nate's siezures have changed a bit. This is pretty much the sequence of his siezures that we see:

1. Staring off to the lower right

2. Tounge thrusting

(usually this happens for a few minutes, so sometimes we don't time it until....)

3. A myclonic jerk, his arms raise up, his head lurges forward and he brings his knees up.

4. Then his eyes get really wide and his seems VERY alert. (but really it's electrical surges throughout the brain)

5. He might have a few of the jerks for about 3-4 minutes

6. Usually, he then reverts back to the staring and toungue thrusting for another few minutes.

So, for a total of maybe 10 minutes his has this siezure.

Now, they just upped his phenobarbital again to 45 mg 2x a day a week ago. We were to do this for 2 weeks and see how that went.

Here's some Team Nate Dog news...

Pass it on!

Thank you all so much for reading these posts and always sending your support our way!

I can't wait to sport my brand new Hoodie soon! Wink, wink!

Love,

Carolyn

How's Nate doing?

2008-10-17T22:45:00.000-05:00

There is a question that I am asked frequently.... "How's Nate doing?" It's a simple question. It's a question that, by no means bothers me when asked. I am never quite sure how to answer that. I'm never sure what it is that people would like to hear. Do I shrug my shoulders and say "good" or "about the same". Or should I go into great detail about what he does on a day to day basis? I struggle each time the question is put forth to me, because I want so badly to say, "He's GREAT!" I'd love to tell all these cute new stories about my growing baby.

But I can't.

When I see a perfectly healthy little baby, right around Nate's age, I smile so big at what an amazing life they have. I hope that their parents don't take it for granted. The smiles, the cries for communication, the hands in the mouth and drool everywhere, the little belly laughs, the new world that baby is learning about through their sight, hearing, smells, touch. All of that seems so simple when you've been through it with no complications. But to someone who's baby doesn't grow that way, it is truely AMAZING! When I see pictures of Nate's perfectly healthy smile before he got sick, I have a sickening twinge go through my stomach, because I miss that. These days though, I find excitement in a blink that shows me he's noticing something. Or maybe it's him breathing faster. These small but simple things are things only someone who knows Nate can notice. But they are amazing all the same. Somehow, someway, that same smiling baby is in this body fighting to come out. Maybe someday he will, but maybe not in the way he was. Maybe someday, I will see my son smile again. Maybe a sweet belly laugh. Maybe he will reach for me again. Until then, I will treasure the simple things.

So, to answer the question.... Nate is doing just fine. He finally got in to have his sedated auditory brainstem response test today. Here's the results as far as I understand them.... he had no nerve response in his right here, none. But, he did have some response through his left. The quietest sound he heard was about 65 decibles which is equivalent to me speaking pretty loudly. Now, just because he COULD HEAR that, doesn't mean his brain knows what to do with that sound. So, we will follow up with the ENT and talk about whether to start with some hearing aids, or go straight to cochlear implants. Apparently, the meningitis caused nerve damage (DUH!!) to his auditory abilities. But however the sound is interpreted by the brain is the new question of the day. We will just have to pay attention to his responses to noises, and it may be just a blink or something, but that IS something.

Nate's vision DOES seems to be strengthening. He definitely seems to focus on certain thing for a few seconds at a time. Again, we of course have no way of knowing what his brain is doing for those images, but it is a start.

He's doing very well with "Mo" at the Britian Center. Mo is his physical therapist and she is absolutely phenomenal! She of course has been doing this for close to 20 years, so she knows just how to hold him to get him to do what she wants him to do. She seems very impressed and pleased when she's working with him. We try to do what she does at home, but honestly I never see the strides he makes with her when I do it. I'm working on it. Someday I'll get it. And then I'm sure Nate will move on to some thing else to work on once I'M a pro! Ha!!!

We the Zellers, went to one of our favorite traditions today. The Pumpkin Patch! Yippee! It was a perfect morning for it, crispy, chilly (but not tooooo chilly), and there were many, many pumpkins to choose from. We got 5 pumpkins, one for each of us. Usually, we do all this late and all the pumpkins are totally picked over! But this day was perfect! The kids had a BLAST and it feels great to give them memories that will last forever! I want my kids to remember our traditions and ask for them every year! And hopefully pass on their traditions to their families in the future!

Well, I am about to fall asleep as I write this... the "back space" has been my friend throughout this entire blog. I'm sure I didn't get every typo. I'm gonna go to bed now, but I'm still praying for guidance and strength and intervention and signs! All the signs have pointed me in the right direction so far.... right????

Love to you all! Don't forget about the hoodies!

MUAH!

Carolyn

What a DAY!!!!!!

2008-09-24T10:07:00.003-05:00

What a day PEOPLE! Sunday turned out to be the perfect day for a drag race fundraiser! We couldn't have asked for better weather! Sunny, about 80 degrees, slight breeze... excellent!

There was about 200-300 people there, although some people weren't able to come in, they just donated at the gate saying they couldn't stay! Thank you to all of you who drove all the way just for that! The rest of you who made it.... was it awesome or WHAT? Our very own "Crazy Aunt Carrie" out did herself! What a woman! She had a fancy walkie-talkie, and was delegating as if she's done this kind of thing 1000 times! It was really neat to see her in that position! Everything ran really smoothly. We had around 170 or so auction items (thank you to all who provided those), and did really well with that!

Our opening ceremony was AMAZING! There were 6 "Team Nate Dog" racers that started it off with a kick-butt BURNOUT! When I saw Ken (Papa) in the very last position for the burnout, it brought tears to my eyes because I knew he was about to blowup his race car doing this burnout! And to see that back end tilt up when he did it... that was probably the coolest thing EVER! Craig choked up and all I could do was bounce up and down with a big goofy smile on my face! Then... we made our grand entrance in a FIRE TRUCK!!! Sirens blaring, pyro-techs blowing up, people cheering and clapping! It was surreal! I tried to hold Nate up, because I didn't feel like we should be the ones who everyone was cheering for. Gosh, it was really something!

The stands were full and to see everyone there wearing their Team Nate Dog t-shirts or Tanks was unbelievable! We did some quick thank you's and shout outs, we presented checks of money raised before this day, we stamped Nate's feet on to Jim "Roadkill" Howe's t-shirt to make sure everyone knew that we consider him FAMILY! Then both Craig and myself did our thing. I wish I would've written down stuff and actually read it, because I really felt like I left a lot of what I wanted to say out. But Craig did a really beautiful, heartfelt speech and I think it touched a lot of people, I know it touched me. Then we presented Carrie and Ken with special gifts, a one of a kind for each. They were hand mold castings of Nate's hands. Thank you so much to Doug DuBois and Alan Webster for their amazing work! Their website for anyone who might be interested is... http://www.essensualsculpture.com/.

Then it was time to race!

There were over 45 racers there that day and that's NOT counting how many STREET racers raced! That was Great! Thank you to every racer that spent your Sunday racing for a good cause, you will not be forgotten ever! Many of you had never even met Nate before Sunday and here you were, we are very proud to be a part of your community!

Ken ended up winning the entire benefit race!!! How fitting is that? Every winner donated their winnings back to Team Nate Dog.... wonderful, thank you so much!

We did a "90 seconds for Nate" donation, a power-lap for donations (anyone who paid $5/car could do two laps on the big track, one slow and one "on the go"), silent auction, and all the admissions from the gate were donated. Even the concession stand workers donated their tips to us! We ended the night with Kenny Jones opening with about 8 or 9 songs. He sat up there with his guitar and totally jammed for about 30-40 minutes! He was so good! Everyone who stayed was treated to something extra special with the music. Then, we had an up-and-coming band: Push to Start. They are some really talented college kids who played all original songs and totally rocked out on the trailer and picnic table we had set up for their "stage"! Thanks guys-- you ended our evening with a much needed decompression show! It was cool to finally have a beer and listen to some great music! Only about 50 people or so stayed to watch the show, but I know everyone enjoyed themselves! Next year, we would like to have this event again (hopefully) and do it on a Saturday so that more people can stay and hear the cool music! Carrie made a demand to the whole band, Colton, Evan, Gabe, Matt and Nathan, that they be there next year! Here's their MySpace URL: www.myspace.com/pushtostart.

Check 'em out!

Those guys donated all their tips back to Team Nate Dog as well, sooooooo we raised nearly $20,000 for the entire day! Good Work! We were BLOWN away at the totals!

Some shoutouts that didn't make it to the mic--

*All of our friends who drove in from KC and spent Saturday at the Omaha Zoo with us.

*Those who drove up ON Sunday and showed their support! We are really sorry we weren't able to talk or visit very much, but we loved that you came and hope you had fun!

*Lindsay and Kylie (and their husbands who spent the whole day running after their own kiddos) who completely gave up their entire day working at the auction tables and adding up totals. These girls also worked very hard to help Carrie organize and get ready for the big day. This fundraiser would not have happened or run as smooth as it did without your help! Thank you isn't even enough!

*Teresa-- your help with the signs and your willingness to do anything Carrie threw at you is so appreciated! You also saved Charlie's life and risked your own... we laugh about it, but it shows how much you love our kids and you went up even more to the top of my FAVORITE people list! I love you!

*Buzz-- your constant support and friendship is without a doubt one of the most important things in our life! All your help on Sunday and your smiling face was incredible! Love ya!

I know there are more to thank but I must stop here for now! Hope you enjoy watching the video and seeing the pics!

Love,

Carolyn

Four more DAYS.....

2008-09-17T11:47:00.001-05:00

Hey there, everyone! I'm so sorry I haven't posted in a while. Things have been super busy and there really wasn't much in the way of "news" so I have put it off. My apologies!

So, I can't wait to see all of you who are gonna be able to make it up to the "Meet Nate Day" at MAM (http://www.mid-americamotorplex.com/).

I'm really excited for this big day. Everyone has been working so hard for so long to make this day great! And it will be, mainly because we will be celebrating life and the glory of helping others! Without you all, none of this would be happening. The support and love so many of you have shown has helped some of us find our true calling. All of this started for Nate, but now it's BECAUSE of Nate. And we are proud of this world for bringing him to us and showing us how to be "better" people!

Also, wanted to let you know how the FUEL event went last week. Let's just say... the hot chicks wearing the TEAM NATE DOG tank tops rocked! I don't want to give too much away in the way of numbers until after this Thursday, because we are doing it again. And can I just say... bikers are cool. These people at this bar were all so generous and caring and really wanted to help. It's heart warming! You've all heard of "Bikers for Babies" and know how many bikers ride for that, but there are a LOT of causes for them to ride. That community does something so special without really knowing how uplifting it is to see hundreds of bikes riding through town or down the highway. When you see that, you know that it's for a good cause and I'm not speaking for everyone, but sometimes I just wanna join the ride pimpin' the mini-van just to be a part of it!

Thank you, you big, bad, scary bikers!

So, Nate had a "pre-admissions appt." today for this auditory brain-stem response test he was supposed to have on Friday. Well, the little booger has a cough-y cold. It's not in his chest or anything, it's just yucky sounding. I feel it's too risky to have him put under with anethesia, the dr. gave me the option, but no chance man! Anyway, we will have to reschedule all that hopefully within the next 30 days.

Other than that, not much going on.

I gotta go feed Nate now and then bounce on up to the Britain Center for his Baby Class. I'll have to post about the first day of that... a stinker that little man is!

Love you all!

-Carolyn

Good Bye....

2008-09-09T13:08:00.000-05:00

Please send your love and prayers to the family of Nancy Ann Sullivan. She is Nate's Great-Grandmother (Na) and she passed away on Sunday, Sept. 7. She was loved because she was a beautiful soul, and she will be greatly missed....

We love you Na!

A moment for acceptance....

2008-08-30T23:58:00.002-05:00

Today was a day that marked a milestone...

Today was a day that I found peace...

Today was a day- finally- for acceptance...

Throughout everything since May 10, 2008, I have been told over and over how strong we are. How we are such great parents, how amazing it is that we haven't let all this with Nate bring us down.

Well, I'm here to tell you right now, that we are NOT strong. I believe sometimes it's a show. I believe that sometimes we tell people what they want to hear. I mean, really, who wants to hear a sob story? I have fallen apart many, many times. I ask God daily, "Why? Why would you think that WE could do this? Why would you WANT us to?" The anger, the sadness, the hopelessness, negativity... it has consumed me in times when I feel I should rise above.

Today, I let it all in and swallowed.

Hard.

I came to the realization that my son, my beautiful angel baby Nathan Matthew is to be loved for what he IS. I have been so focused, for so long on the NEXT step. What do we do now? Where do we go from here? What is going to happen if he can't walk, or talk, or smile, or cry... EVER? Will these siezures go away, or lighten up? What will he face, what will we face for the rest of his existence?

I vow, from this day on, to accept my son for who his is. For what he can do. Not who he was, or who I WANT him to be.

Nate had an EEG on Thursday and his neurologist upped the meds, just like we thought he would. He doubled his phenobarb, and added Topamax. He slept ALL THROUGH THE DAY yesterday. He would NOT wake up. He also had a bit of a cough and with Emi & Charlie being sick this week, we thought we oughta get him in to see a doctor. Of course with the holiday weekend, we decided not to wait until Tuesday to try to get him in.

So.... back to Children's Mercy.

And you know what? They TOTALLY remembered us! It was like Nate was famous! Everyone came around and wanted to meet the "dog" himself. Nurses from May 10 commented on how GREAT he looks. I bit my tounge. It's so hard to think that he is sooooooo much better than he was when he first got sick. But he is! Look at this little fighter.... he breathes, he eats, he drinks!

I was really more focused on the cough and making sure he wasn't aspirating. So, they did a chest x-ray and.... sho-nuf... CLEAR! But the doctor wanted to focus on the siezures. I really kind of blew it off at first, since we had just been in to see the neurologist and got the low down. Well, after three hours, we had the dr. come in and sit down and tell us that she had talked to our neurologist. She seemed very serious, and again- I about blew her concern off. But she proceded to tell me that Dr. Graf actually did the full "read" on Nate's EEG. The siezure activity that we would time were from the first "jerk" (myoclonic) to the last one. In actuality, he is pretty much having siezures almost all the time he's awake. And they are so deep in the brain that it doesn't "show" right away.

The look on the doctor's face was serious. I came to understand finally at that moment.

Nate may never be siezure free. Definitely will not be disability free. Most likely won't make the great strides he did after first getting sick.

I will do my best to be a great mommy to Nate. But in a way, I felt a great weight lifted off my shoulders by coming to terms with his "prognosis". I'm not giving up any hope (believe me), but I can stop focusing so hard on HIS future of what he may or may not be able to do. I will love him for who he is.... take pride in him being. I cannot fix this, I've known that all along, but this acceptance has been a long time coming. "Mommies fix and Daddies protect", that's what Carrie has always said in our moments of feeling sorry for ourselves and crying on the phone. Both Craig and myself need to give up control. I CAN'T fix this. Craig COULDN'T protect him from this. The freedom of knowing this is uplifting. I can finally relax. I can finally focus energy elsewhere instead of constant "fix" mode. Emi & Charlie can finally have their MOMMY back! For some reason, I don't feel like I have to be 5 different people anymore. My energy has shifted, spirit has grown, faith is stable, love is constant. I Have my son. He's HERE. He is changing the world with every prayer, with every t-shirt sale, donation. He will change lives! We will spread his spirit to others with medical needs. We WILL make his life so much more than a constant siezure. He's NATE, the DOG!

It's late, and I've been wanting to post all this, but until my fingers graced the keyboard I had no idea what to say. I read some blogs that http://www.house-of-five.blogspot.com/ has posted and sends links to. Inspiration came and out spilled my heart.

Enjoy your children for what they are and who they are today. Stop thinking about tomorrow and the next day and the next year or two. Love them for them.

Thank you all for your constant support and love!!! It's helping, in more ways than you can "see".

Love,

Carolyn

NEW FAMILY PICS...

2008-08-26T09:04:00.000-05:00

Hey there everyone~~

Just wanted to post some pics that we had taken last Friday. They are wonderful! Go to http://www.amymartinonline.blogspot.com/ to see more of her work! She's amazing!

Aren't they beautiful? Hope you all enjoy!

-love,

Carolyn

WARNING... TEARS AHEAD!

2008-08-21T21:51:00.003-05:00

Hey, everyone! I just wanted to say thank you to all of your well wishes for the previous post! I have had a rough week, and I know it's normal, considering the circumstances. For some reason, I have been doubting everything about myself... my abilities as a mother, a housekeeper, a wife-- even a good person in general. I've been praying a lot, a for some reason, I feel my prayers now. We always say our prayers before bed and before eating, kinda like you do routinely. But, after this week, I've been praying for myself instead of my children. I've prayed for strength. I've prayed for acceptance. I've prayed for motivation. I've prayed for the ability to make good decisions. I've prayed for my mom to send me her strength from heaven. It is really, really hard to go through all this without her. I have such a wonderful support system in my husband, family and wonderful friends, but it does feel lonely without your mother to talk to. One person, who is not my mother, has stood strong. One person has been able to "mother" me through this. This person takes on every single task with an "You got it!" attitude. This person is a rock, not only to me, but to my husband and my children. You all know her as CRAZY AUNT CARRIE, and she is a shining example of a selfless, caring, generous human being. She's only one year older than me, but I have looked up to her with such admiration. Ever since Emi was born, she has been the BEST aunt anyone could ask for. If Emi is having a hard time with her "annoying" little brother, I pick up the phone and hit speed dial for her to talk to the best person I know who had to deal with another "annoying" little brother. She always knows exactly what to say and do to make everyone feel loved and cherished. This woman has an AMAZING ability to make people feel special. With her quick wit and contagious laugh she can just brighten any room she enters. Her husband, Erin, and her beautiful boys, Kole, Jaren and Brady radiate the same energy and I wish I could see them more, just to wrap my arms around them and say "thank you for being in my life!" I can't imagine what all this that we've gone through since Mother's Day would be without her. I just wanted to put a shout out to the most important woman in my life, besides my mom... I love you, sis!

Also, to another rock. This person completes and holds our family on a pedestal. This person knows how lucky he is to have his family. He is the proudest Papa on earth, I know that. He is also my husbands BEST FRIEND and I know there's no way he would be who he is today with out him. The picture of strength. The bear hugs that come with, immediate welcoming into his family to anyone who we would call a friend. Although, (he may not think so) very intimidating at times, my father in law- Ken- is one of the smartest, strongest, funniest, coolest guys I know and he definitely deserves props for everything he has done... from dropping everything and speeding to KC when Nate went into the hospital (both times) and watching our children. No questions, he was THERE! To helping to organize the MEET NATE DAY at MAM (plug, plug). Everything in between is definitely not forgotten and I hope he NEVER thinks we expect it or take it for granted. So, who loves you? You know!

Quickly, to my husband. I can't even begin to explain how much you mean to me. I was driving home from work last night and heard that new Rascal Flatts song, "You Save Me" and the tears were a flowin'! You are my best friend and my soulmate! You are the BEST daddy anyone could ever ask for! I am so so so proud that YOU are mine! Everything you do, I know it's for us. And you are everything to ME. I love you.

Okay, so.... this week as far as Naters Potaters (as Emi calls him) goes, was pretty uneventful. Pretty much the same. He is still having siezures, although they do seem to be shorter. He started eating sweet potatoes this week. He likes them, I think. He never makes a "yuk" face unless he's being force fed the phenobarbital disgustingness. So, no emotion must be good I guess. He has been squeezing very hard on his thumbs lately. He will make a fist and curl his thumb to his palm and wrap his other four fingers down on top of it. Then he is VERY tight. So, we are working with the OT on some sort of splint maybe to help straighten out those thumbs. If he keeps up with this, they won't be "opposible" anymore!

Emi started first grade last week, loves it! She has always loved school! Her teacher told me at back to school night, that Emi is a delightful student. Yea!

Charlie will start 3 year old preschool on Sept. 3, and he's having a hard time understanding why he can't go to school like Emi. He says, " I never get to go to school!" I keep telling him how long he has til he gets to go, of course there is no comprehension of time at his age. He just whines. But, I have to say, he's probably the cutest whiner I've ever seen.

Okay, well, now that I've put you all to sleep, I must go and see who won HOH on Big Brother! Kisses!

love,

Carolyn

Sunday.....

2008-08-17T10:52:00.000-05:00

Hey there everyone! Today is Sunday, there's not a lot of "news" to report, but it's been a few days since I posted, so I thought I would. We have some fun art projects planned for today to get Emi and Charlie involved in the auction at the fundraiser in Sept. We will get going pretty soon to go get all that stuff.
Nate's on his last day of carrots, we will start sweet potatoes tomorrow.
We've been trying to work him out everyday with stretches and some small resistance moves. He has some strength in his legs, but for the most part his legs bend pretty easily, not putting any weight on them. So, I'm working on trying to get him to put more weight on them, simply by holding him and bouncing him lightly on his feet. Hopefully that little bit of exercise will help, who knows. I gotta remember sometimes that his little brain doesn't work the same as a "healthy" brain. His just needs more healing and time. Also, I keep trying to remind myself of what he CAN do NOW and try not to focus on what he may or may not beable to do in the future. Or, what he used to do. I catch myself every once in a while being sad about not seeing him smile or talk. I never thought I'd say this, but I'd give anything to hear him cry a REAL cry (not one involved with a siezure). I remember clearly the last "conversation" we had and I miss that terribly. I know that being sad about the past doesn't help moving towards the future, but I just can't help myself sometimes! Sometimes I find myself feeling like I don't know who I am or what kind of mother I am anymore. I am constantly going through the motions and I forget about feeling the emotions. I want to be able to be the kind of mommy that Nate needs and Emi needs and Charlie needs. I just am so tired of all these different hats I wear.
I'm sorry, I know you all don't need to read about sad things, but I guess it doesn help me to right it down and share it.
I'd better get these kiddos moving and myself as well. Back to reality....
Love you all!
Carolyn

HBOT... PEACE OUT, FOR NOW!

2008-08-12T17:47:00.002-05:00

We are done with the HBOT for a while! Yeah! Today was our last day! It was actually only 39 treatments, but Emi is starting first grade tomorrow and the 1:00 treatment wouldn't get us home until after school was over! So.... done, done, done. We will probably do another round in January or so.
Nate is still having 3-5 (give or take a few) siezures per day. It's still so awful to see him have them and know there is not a thing I can do at that moment to stop them. It's really heartbraking. I keep hoping that they will just go away on their own "magically". He's awake so much of the day, then at about 7:00pm he is OUT! And I mean.... OUT! We still don't know if he wakes up in the middle of the night. So, we actually are sleeping through the night, with his last feeding around 8:30 or 9:00 then his next around 6:30 or 7:00 in the morn. It seems to be just fine, I stay up usually pretty late and I always check on him before bed. Before all this mess with the meningitis ever happened, Nate was going about 9 hours at night without a feeding. So, now we have weened him back to that. It helps me stay sane. I'm so tired these days, more exhausted then ever. I don't think things are going to get any LESS busy, so I should just get used to it huh?
We have been referred to the Britain Center for early developmental work. I emailed them yesterday and am expecting a call back soon. I'm not really sure what all this would entail as far compared to what we've been doing already, but it's worth looking in to. If anyone has ever heard of it, shoot me a email about it. teamnatedog@hotmail.com.
Well, believe it or not I gotta go take care of the children! Love you all!
-Carolyn

PRAYERS FOR CONNIE

2008-08-10T15:48:00.003-05:00

Hey guys!
Ok, a friend of mine needs some prayers, and who better to come to than you all?
This friend's mom has had cancer and she's having some pains where her tumor used to be. The doctors think that it might be growing again. She's at her limit as far as chemo and radiation, so if this is the case.... let's try not to go there! SHE NEEDS PRAYERS! All the prayers we can muster up, they're just like love-- you can always make more! Please keep this woman in your thoughts and prayers! This friend of mine also.... I know how scared she is right now, and she's gonna need some help getting through this. This woman's name is Connie, my friend's name is Cortney. So, let's get to it!!!!

Love,
Carolyn