VMRs and Puffs...

VMRs...

Dr. Chugani reviewed the denial letter from insurance. I don't know for sure his actual comments, but shortly after Sarah told me she gave it to him, she emailed me back saying we need to do an urgent appeal. I'm gathering he thinks it's necessary. If only our insurance felt the same way!

She asked me for more specific info...like, when was the last EEG or VMR? And, have the seizures changed in frequency or presentation?

I put it all out there...and within a couple minutes she sent me an email saying she thought that was really good information and to cross our fingers.

We're still up in the air on travel arrangements. I just asked her if he would still want us to come even without the VMR. She's asking him and thinks probably so since we can still do the PET and MRI. I hate cutting it so short, but if our whole trip gets the ax because of this one test, I'd like to be on the safe side. We'll see what he says.

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Puffs...

Yesterday was a big day for us! For the very first time, Austin fed himself a Puff that I put on his high chair! It's usually the same thing...I'd put it down, he'd have a blast playing with it, but he'd never connect that it was food and eat it. Bigger stuff he'd always put in his mouth (teething biscuits, etc.). Not this time...the very first one I put down, he just picked it up and ate it just like it was nothing. Poor thing, probably thought his Mommy was a crazy person...I was clapping and cheering like he'd gone potty on the toilet or something! It was a big deal though!
Not only was it huge that he got it in his mouth, but the CHEWED it without any problems. I've always been scared to give him a whole one...But, we worked on it in OT Wednesday, so I finally got the nerve. I guess I underestimated the little guy!


UPDATE:
I just found out that Dr. Chugani still wants to see Austin regardless of the VMR. Looks like we're going! I better get on those tickets! :-D

Once again...

I found myself caught up in the hopeful -not that that's a bad thing. I mean, that's what we're riding on here...H O P E!!! Buuut, there I was, once again, finding myself picking up the pieces of more disappointment on Sunday. I really should know by now to give it more time...but, how can I help it??? When Austin has these amazing days -or a week even...it's hard not to start imagining life without seizures. Because I start getting a little taste of how it could be again.

Saturday was just about the best day he's had in months. Very, very few seizures to speak of...I even remember sitting there feeding him and I had to ask Chad, Can you remember the last spasm he had? I honestly couldn't recall having seen one in hours. HOURS people! That does NOT happen very often. Then, I started thinking about the whole week in general...good moods, few seizures...HEY!! Could it really be?? The med FINALLY kicking in?

I was on cloud nine that night. I was even thinking about our upcoming trip to Detroit...maybe a total waste of time...we'd get there and he'd say...I don't know why you even brought him here...he's seizure free! Yep, my mind was ALL OVER the place with excitement.

But, Sunday morning he woke with a cluster...then another in the high chair...then head drop after head drop...all day.

That was THE worst...these awesome days seem to be followed by horrible ones. I wonder why that is? He doesn't typically have just a mediocre day after a great one...Weird.

Anyway, they've sort of leveled out a bit for the moment. About average, I'd guess.

They're different. They're not as intense as before. They're clustering more. There are very few slams on the floor. Very few.

I don't know what's going on. I'm counting down until we see Chugani.

About that, I got the rejection letter from insurance in the mail today. It didn't even mention anything about what I was concerned about. It said, ...it is not considered medically necessary for final evaluation of patients who are being considered as candidates for resective surgery. Member is not eligible.

Still waiting to hear from Sarah about that. She emailed me earlier and said she's still waiting on the fax from them. We'll see what she says about that.

waiting, waiting...

I'm anxiously (aaannn-xiously) waiting to hear back from Sarah in Detroit. She emailed me this morning saying that my insurance has determined that Austin is not eligible for coverage for the VMR. UUGGGHHH!!!!!!!
Sooooo, she said she was waiting on a fax of the denial letter to see exactly what they're disputing so she can go from there. She's also supposed to be talking to Dr. Chugani to see what he recommends.
Here we are less than TWO WEEKS away from this trip...I want to call my insurance company, but I'm trying to be patient and wait to see what she has to say first.
I knew, knew, knew there was going to be a problem with this one. After reading the criteria, I just knew it. First of all, since big shot doctor in Houston is refusing to help, I have no specialist backing me. He hasn't seen him since all this focus talk came up and doesn't seem interested to either. I was blown off by the nurses when I brought it up so I dropped it and went straight to Chugani. All I wanted was confirmation that I was not crazy for thinking there was a connection with his right side and his seizures. I got it from him, but never pushed it anymore with our local doctors...I thought I'd just drop them and find a new local doctor -and in the meantime, see Chugani. That probably backfired in my face...
Now, I don't have anyone (besides his pediatrician and a doctor who's never seen him) to "recommend" this procedure as medically necessary.
I honestly don't know what to do...I guess all I can do for the moment is wait to see what they say in Detroit.

By the way...thanks Jen. That was exactly what I was thinking...we have a new ally up there rooting for Austin!

Namesake

Christmas 2007

Ever wonder where we got the Thomas in Austin Thomas?

We played the name game for months when I was pregnant. Chad and I had a fairly good idea where we were leaning, but were waiting for Austin to make that confirmation. No set names until we saw that face...It drove everyone crazy -not knowing..and that was part of the fun!

Austin was just for fun..it was one of the only names that we both agreed on...not a family name nor a deeply significant one..we just liked it. But I also wanted him to have a name that was more than just a trend. That's where we got Thomas -after my paternal grandfather, Thomas Carlton (Pawpaw to me).

This name was special to me not just because it was a family name...but also because of the man behind the name. A strong, hard working World War II veteran...a man that made a promise to be saved and walk with Christ so that he could one day join his son in heaven. A man that kept that promise and spent every Sunday morning in church. A man that loved his wife so deeply that he was lost without her, yet somehow managed to keep going. And, behind that tough exterior, I saw a sweet old man that I admired. And every time I say, Austin Thomas, I think of him.

We lost him on Sunday morning. He was 84.

I was lucky enough to have seen him on Saturday night. When I drove up, he was standing in the doorway with a smile on his face. And when I left, I think I woke him from a doze when I leaned over and kissed him goodnight. I'm so thankful because I will always have that vivid memory of the last time I saw him to carry with me...

Real quick..

While I have a minute, I thought I'd share the good news...the PET scan was approved by insurance this morning!! YAY!! Now, the prospect of going to Detroit is a reality. We're still having some issues with VMR, but hopefully we will get that wrapped up soon. It's looking okay for right now, but we'll see. I'm not going to make any assumptions until it's a done deal.

We have OT shortly, and I can't wait to see what she thinks about Austin's progress in feeding!

I'll update on that later...

Gimme a cheeseburger!!!

Yummy spaghetti!

The dream of getting Austin on table food is becoming more tangible...FINALLY! This weekend was packed with new foods and textures...and he ate them all with a smile! Potato salad, beans, spaghetti and meatballs, just to name a few...He's also gag-free on the Gerber meats! We tried the Puffs again this morning and I really think he's getting there. I didn't give him a whole one, but I crunched them up in bananas (like his OT showed me). I did hold one for him to nibble on too and he did great. I'm going to wait on giving him a whole one for when she gets here on Wednesday, though. The last time he had one he threw it right up (it was her, not me!). I guess it really was me and not him having the problems...it's not like I haven't given him anything to try, but I was quick to assume he wasn't accepting it when I should have kept trying more often. He's like a different baby now though. He used to make this awful face and refuse to take another bite. And then suddenly he's welcoming every bite he gets! My mind is just turning with all the new varieties for him to try! REAL FOOD!!!! Next up...CHEESEBURGER!!!...just kidding, but I bet he'd love it!

There's still total confusion over the seizures. Up and down from one day to the next. I can't figure out what's going on. There's too many simultaneous changes to pinpoint anything...dropping the vigabatrin, adding the Depakote, increasing the Depakote, teething, colds...UGH, I could go on and on! But, then again, maybe it's normal to fluctuate so much? Who knows, the doctors won't give me a straight answer and I've never dealt with seizures before this. I can't find anything online that talks about it either...It's pretty frustrating though because our happy and productive days are usually hinged on how many seizures he has each day.

Still no final word on Detroit, although we're making mental preparations to go. We're waiting for the OK from insurance...It may be tricky making travel arrangements when we're cutting it so close. I'm just crossing my fingers that we find out in plenty of time to plan a smooth trip. I'll let you all know as soon as I find out!

PET scan info

For some of our close friends and family that have questions about what we hope to accomplish by going to Detroit, you can read this for a better explanation of the PET scan. This trip will merely be diagnostic testing, and hopefully we will come home with at least some sort of idea how we can proceed with treatment for Austin. But, maybe not...it may take much longer to reach a conclusion. Either way, I know that ultimately we will learn far more from seeing Dr. Chugani than staying here and continuing on the path we are on now.

the chunky stuff...he showed me!

I got quite a surprise yesterday during our therapy session. We've been having an ongoing struggle getting Austin to convert to textured foods. He gets grumpy and gaggy on the chunky stuff. Right now we're just trying to get him to eat the Stage 2 plain meats without gagging. It's not chunky, but it's grainy and drier than the typical fruits and veggies...even the meat/veggie mixtures. He does ok most of the time...but this meat scares me to death! The first time I gave it to him (months and months ago), he spent the night vomiting over and over. I've been really apprehensive about it ever since. I told her that I don't push him on it. If he starts gagging, I'm done and we put it away (I'm scared to push him over the edge where he'll throw it up). Then she let me in on another client she has...a 6 year old that will only eat oatmeal and rice cereal...a 6 year old! She said that her parents never pushed her and that they would quit when she coughed or gagged. Now this child won't even eat baby Puffs. Now, I don't know the whole story about this other kid or what other kinds of issues she may have...I'm not judging. It just scared me because that's exactly what I do with Austin. I thought about it and talked about it and realized it's more of my problem than Austin's problem. He needs to learn this and I'm not helping him. I'm more afraid of the possibility of him not tolerating it rather than looking at the possibility of a successful outcome. I'm letting this fear of failure overshadow the accomplishment he needs to achieve. After realizing this, I sat down with him at dinner and attempted some real table food...chicken and rice casserole. He ate it just like he'd had it a hundred times before! He worked it around in his mouth, made mmmm sounds, and polished off the entire serving! My big boy! I guess he showed me!

Detroit called and said we may not need the pre-authorization for the VMR! As ecstatic as I am to hear this news, I'm also a little confused...really confused actually. I had just argued with the girl from our pedi's office about this the day before...I was looking at the criteria on my kitchen table that I had printed out. It was specific about it needing to be pre-determined and so on. I will have to call back and re-confirm...I guess I need to hear it from my insurance company myself.

I also received the letter of medical necessity for the PET scan from Houston. Although it was missing additional paperwork for the insurance, it was exactly what I was hoping for. I'm pretty sure it covers all the bases...why Austin needs it and why he needs to go to Detroit for it. I immediately faxed it over and they informed me there was a form that needed to accompany it...if I understood her correctly, she is going to take care of the rest for me....let's hope!!

Now for seizures...we got word on his labs from last week...we got the Zonegran and Depakote levels checked along with other areas (liver function, electrolytes, etc)..Increase Depakote to 3ml 3x/day. That's 9mls a day! That seems like a lot...but what do I know...Anyway we started the increase yesterday...we'll have to wait and see how it works.

Update

Just a little update on my last entry...

The "good news" about the VMR is back into panic mode!

I got a call from the referrals department at our pedi's office. The girl I spoke to said this process of getting authorization for these procedures is "illegal". Illegal? Furthermore, she said that I don't even need pre-authorization for the VMR...Nearly speechless, I tried explaining as best I could the whole situation. I have in print that the VMR does require pre-determination and that Austin must meet certain criteria in order for them to approve it. She still argued with me, saying that it doesn't. She also said that there's no reason for me to travel to Detroit for an EEG. That there's no reason why he can't have one in Houston and have them fax the results to Detroit.

I'm totally humiliated. I'm so sick of running into road blocks at every turn. Why does this have to be so difficult? I felt so strong and so proud of myself today. I felt like there was at least something I could control in this situation...that being where we can take Austin for help. Now, that is possibly being ripped away as we speak.

I called Detroit in panic and said that we have mass confusion over here! I'm confused, our pediatrician's confused, the snotty woman in referrals is clearly confused...She's calling our insurance company tomorrow...then she's supposed to call me and fill me in on exactly what's needed for everything.

I'm still a wreck right now despite the fact that I can't do anything until I hear from her. I look at Austin right now running around in his walker...that big, open-mouth smile and excitement as I make silly noises to him. I think to myself... there's no limit to what I would do for him. He's my precious baby that doesn't deserve any of this. But, unfortunately, never in my life have I been known as a fighter. I've always been the passive, duck-out-peacefully one. I've rarely been the one to speak up when someone cuts me in line or lodge a complaint about anything. I don't like to make waves and rock the boat, so to speak. I just want to stay under the radar and get through without drawing attention or creating drama. I can't do that now. I have to go so far out of my comfort zone...this pressure...I am his mother. I am the one that has to make sure he gets the best...no matter how uncomfortable it makes me to confront this...he's counting on me. I want to give up every time something like this happens. Until I look at him and all his innocence. It brings me to tears thinking about his resiliency. He's been through so much...yet he keeps trying and keeps going. He can have a seizure, fall to the floor and bonk his head. But, he gets right back up with a smile and keeps on going. Maybe I need a lesson from the real fighter...Austin.

Not giving up

Nearing the end of my rope on the VMR ordeal, I decided concoct a Plan B. Our pediatrician. I couldn't just let this go without a fight. I called them up yesterday morning with as much assertiveness as I could muster up.

I put it all out there for a nurse I'd never spoken to before. I left nothing out, including my opinion on our current specialist.

At about 1:30 pm, I got word that he couldn't do it, along with an explanation of why he couldn't. It screamed misunderstanding...I could tell the doctor must have misunderstood the situation (which is bound to happen with relayed messages). I came so close to admitting defeat and hanging up. Then I thought of us having to settle with our current treatment plan and prognosis. So, instead of giving it up, I pleaded with the nurse to talk to him again...this time I know she heard my voice cracking...my calm assertiveness turn to desperation. I told her this was probably our last alternative and that I just needed him to agree that this test would be beneficial for Austin. I went through all the symptoms he's having that suggests that he has a focus. I told her I could get all this information to him if he would just help us. She agreed to try again and said she'd call back and let me know.

By 4:30 I'd almost given up. Then I got the call that brought me to tears...happy tears, that is! She said that he would need to speak to someone in the insurance department to find out what format this medical necessity letter needed to be in, and that he would work on it the next couple days.

He's agreed to do it. My only fear is that the insurance may not accept it since he's not Austin's epilepsy doctor. I don't know, we'll see. I'm just glad we still have a little to hope for...at least it's something.

In other Austin news...his spasms are crazy up and down. Late last week and into the weekend he was doing so great. His moods and seizures go hand in hand. Great seizure day...great moods to go along with it usually. We even let him take a walk around the living room without his helmet. He was doing that well. But, just as I start getting used to the idea of less seizures, they go back up. It's so confusing. I cannot figure out why this keeps happening. I just don't see how he can do so well for several days and then we lose it just like that. It was so great on Friday night that I even forgot about it for a while. Then it was like, I remember this! This is what it feels like to have a normal routine that doesn't involve seizures! We played and laughed and just did our thing that night. I didn't have that sadness hanging over me. I just enjoyed every second of his near seizure free evening. I remember calling Mom up on Saturday morning...I said, I wish you could see this boy right now! He was so full of smiles and expressions...and not full of seizures. I had so much energy that day. I was optimistic and so excited that I felt total rejuvenation. We took advantage of the warmer temps outside and played in the yard...I cleaned the house and did lots of laundry...it's amazing how different I feel when Austin's doing well. It's like I'm a different person. When he's yucky, I'm yucky...when he's great, I'm great. Anyway, that evening when he woke from his nap, our "norm" was back, unfortunately.

I was more determined than ever to get this VMR so we could make the best of our Detroit visit. I don't know how much we could really get accomplished there without it. It's obviously necessary or Dr. C wouldn't want it done.

Please keep little Austin in your prayers. We need all the help we can get. This process to get to Detroit is so intimidating. I'm just praying that once we finally do get there, that it will be worth the fight. I'm praying that we will have new options and more answers. I have faith that even if Austin is not surgical, that Chugani will shed some light on his situation.

By the way, thanks to Jen and Danielle for the encouragement! I'm working on a lovely letter to our not-so-wonderful specialist. I'm sick of not being heard!

"NO"

I had a whole post prepared this morning. I was just finishing up when I lost my internet connection (gotta love tha dial up!)..I'm sure it was saved in here somewhere, but there's no point posting it now when I already got the confirmation I needed.

I went on and on about how I was amazed at Trevy's neuro. How she put faith in him and gave his parents optimism...even during the dreariest of moments upon receiving a devastating potential diagnosis (from another doc). I was taken back by reading of her compassion for Trevy.

I remarked on how I wish we had that as well. How furious I am that we're 0-2 in the neurologist department so far. How insulted I am that our specialists don't take the time to appreciate how much I love my Austin. Clearly they do not. If they did, they would show a little more sensitivity towards us and respect how difficult this situation is for us. I'm insulted that Austin is only known to them as a name and DOB. The nurses I speak to over and over have never sincerely asked how he's doing. He's just a name on a sheet of paper to them. I've never gotten an ounce of compassion from them. Not a bit. I didn't think this long wait to see our new one in March could get any worse. But, TCH certainly proved me wrong.

After our three month space between appointments turned into nine months, it was clear to me that this guy's priorities are not in order. He simply cannot provide adequate care like this. Whether it's due to his indifference or just an inability to turn anyone away, it's not for us. And because of this I turned to Detroit for guidance and hope and optimism -something that is extremely lacking where we're going now. Dr. C's email gave me so much hope. That sinking feeling in my stomach turned to butterflies. He opened a door that I thought was locked. Even though we've never seen him and we don't know if he can even help Austin yet, he gave me renewed strength to keep going and trying...and hoping. All we had to do was get there.

If it were only that simple. Nothing is simple anymore. Not colds, or feeding, or development, or rashes, and especially not doctors and hospitals. There is always more...more complications with everything, whether it be drug interactions or side effects or the dreaded insurance procedures.

We got a big fat "NO" for the VMR (the 24-hr EEG). He refuses to cooperate. I didn't just get a "NO", but I got a whole load of condescension and sneering.

And although I had a clear cut rebuttal to fire at this witch of a nurse (I'm trying to keep this PG here!), the ammunition that I needed did not dawn on me until I hung up the phone...as usual. As I crouched in the hallway in tears, I wondered how he had the audacity to deny my child better treatment.

I know that Dr. C gets tons of out-of-state patients all the time. I'm sure his staff knows exactly how this procedure is supposed to work. Yet, the people here are saying that it's absurd. She even snickered a bit when I told her how the process was explained to me. As if one of us (me or the nurse in Detroit) has completely lost our marbles. She said, "There's no way Dr. W is going to write an order for a procedure to be done out-of-state for another doctor." And, "...there's no reason to go all the way to Detroit for an EEG when you can have one done here." No matter what I said back, it was totally ridiculous to even suggest such. I hung up with her with my confidence severely damaged. I was furious, overwhelmed, and humiliated. And as I repeated that comment in my head about going all the way to Detroit for an EEG, I got even more angry. Angry because not only will Dr. W not order one here, but he won't even SEE him!

I wished so bad that I could rewind back to that conversation and remind her of that.

I never say what I wanna say when I wanna say it!! Conversations like that always become something that I replay over and over in my head...and then cringe over and over.

I have a feeling that before all is said and done with the people of TCH, I will have gotten my satisfaction in one way or another...whether it be by finally telling them exactly what I think of them or by Austin proving every one of them wrong!

Quick mention...

My strong-willed little one...

So, Nana came to the rescue this past weekend. I was desperate for relief. Chad's been working 7/12 nights, the yucky cold was making him restless, I was running out of ideas of how to entertain him while I was fighting off a cold myself, not to mention totally stressed about the Houston ordeal. She couldn't have come at a better time! I got a looonng bath and actually got to shave my legs and go to bed before midnight! Aaaahh, MY precious Mommy! The company was a nice change too!

But, like I already told her....she opened a can of worms!

Those grandmas sure know how to spoil a baby!

But, I'm grateful that she came. Not only did it give me much needed rejuvenation, but it showed me how quickly my little boy can catch on!

For several weeks now, Austin's been leaning over when he's in my arms every time we walk across his playroom (which we have to cross to get to his bedroom). I knew it was because he wanted down. I thought that was great that he connected the two. A lot of times, I would let him down and we would walk (while I held his hands) to wherever we needed to go. BUT, NANA! She pretty much let him down any time he wanted! She'd walk him ALL OVER...until she was literally sore! She started to hold his chest instead of his hands...which he oh-so-much-prefers! He thinks he's going solo! He likes to stop and touch the floor every time he reaches a new surface (rug, wood, carpet, etc). He gets so excited that he does a little jig, especially on the hard floor!

Now, EVERY TIME I pick him up he thinks he's got to get down and walk...like Nana walks him! I'm not complaining...yeah, it's a little more strenuous than just carrying him (which is not exactly light duty either), but I'm proud of him for letting me know what he wants. Sometimes he throws himself to the side so forcefully that he ends up nearly sideways on my hip! It's a sight! Although more work, it's a very welcomed sight!