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