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