What's the news????

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?

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???

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!

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...

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...

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...

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

How's Nate doing?

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!!!!!!

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.....

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....

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....

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...

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!

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.....

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!

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

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