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

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.

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!!!!

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