Tuesday, March 31, 2009

Part II

I still can't get over how amazing the people were at Children's Hospital of Michigan! From strangers we passed in the halls all the way to Dr. Chugani. Phenomenal, those people. We are certainly not used to such a warm welcome from a hospital. THAT'S the way it should be!

Everything went so smoothly. No waits, no glitches, no cold shoulders...Austin got all kinds of goodies from the PET Center...a new blankie, a truck, stickers...most importantly...he got lots of love and attention.

I could really go on and on at the little things that impressed me...but that would honestly fill a page.

Every single person we encountered there was kind and sincere. They seemed to get it -unlike our current hospital. No one was a stranger to us. If we looked lost, they dropped what they were doing to point us in the right direction (or personally take us there themselves). If we would be waiting longer than normal, they actually let us know and kept us company and tried to find fun things for Austin to do. Dr. Chugani even made sure we had a ride to the airport before heading that way himself.

NOW, I know.

I've constantly remarked at how cold and impersonal our current hospital is...how everything is an obstacle. I was beginning to think I was overreacting or taking it too personally. But, no, it wasn't me...it was them.

I wish we could just jet up to Detroit for every appointment! It would almost be worth it!

Monday, March 23, 2009

Part I

During the VMR...

Getting prepped for the VMR...

It's amazing how much can change in six days...

The cold, rainy Texas 40-ish temps when we left were replaced with sunny, warm mid-70 temps when we returned from Detroit.

The barely budding azaleas in my front yard the week before are in full bloom now...

There was no visible sign of that dilapidated old house down the road -instead, there was a completely framed new one right next to the bare ground where the other once stood...

And, that anticipation I've held on to for months was replaced with a new found sinking feeling...and confusion.

What we found when we got there was the complete opposite of what we were seeking. The suspicion of a left parietal focus turned out to be possibly a large right hemispheric focus involving the right temporal cortex, right frontal cortex and possibly the right parietal cortex. And, the final report before we saw Dr. Chugani stated that Austin could be a surgical candidate.

That was before we saw Dr. Chugani...

When he came in and talked to us, he talked about how well Austin is continuing to develop (even though he is still quite delayed). He said that kids that continue to progress despite the seizures are typically the kids that are the surgical candidates. I gathered from his comments that it was because those are the kids that usually only have one affected side (or the majority of the issues are located on only one side of the brain). This all sounded very positive...especially when he said his gut feeling was that Austin is a surgical candidate.

That was until he had time to observe Austin and talk to us a bit more about his behaviors. Austin is obviously left-handed (which does not support the indication of the right-sided problem). He also grabs and slaps at his right hand...which clearly signals a left-sided problem (remember that a problem on either side of the brain controls the opposite side of the body).

So....instead of getting and soaking up all the good news he came in to bring...we were all left with confusion. His decision was to schedule another PET scan the following day. This time with a different tracer which would attach itself to the GABA receptors which are usually affected in epilepsy. It is still under research and we would be a part of the study so it was free.

That also revealed right-sided abnormalities...but there were small issues on the left side as well. Without a confirmation from the VMR (it was still extremely chaotic from the hypps), we had nothing else to go on.

We are probably dealing with bilateral problems -more specifically, multifocal cortical dysplasia. He said that there is no next step until his EEG clears up -which it will eventually, but it could be a year or so. Then, we could maybe get a more detailed look at where the seizures are coming from. There were no seizures caught on the EEG because of the hypps...it was too crazy to depict specifics.

Our plan...continue with new med trials (he suggested Banzel and Topomax) or the keto diet. Keep up with routine EEGs until the hypps go away and try another PET then.

He also said that our current doctor is one of the best and to keep with him...but, he also suggested another one in the area (the one I tried for in the beginning). I will get on the waiting list today to see him. As much as we hate our current hospital, he said it is the best one we could go to in Texas and to stay put. He frequently works with them and knows their capabilities.

But, the most important thing he said was, "I really believe that Austin's seizures will come under control."

That's what I desperately needed to hear.

(By the way, the MRI was clean)

Thursday, March 12, 2009

Homebound (today)

I seriously thought we were in Spring mode...a good consistent week in the 70s. The weather's been so pleasant that I thought it'd be a breeze getting all my errands done at the last minute...

Guess I was wrong! :)

We got hit with a cool front yesterday which has made today one of those days where you just want to lounge in your jammies and channel surf. Cold, cloudy, rainy...I don't mind those days when I have nothing to do...But, considering we leave Saturday afternoon for Detroit, and I have NOTHING in place besides reservations...it's freaking me out!

Today was supposed to be buying day for last minutes and tomorrow would be packing day. Not happening!

We'll get it all done though...just a little later than planned!!

This will probably be my last chance to post until we get back...

Here's the plan:
Leaving Saturday
VMR on Monday
PET scan on Tuesday
MRI on Wednesday
Dr. Chugani on Thursday!
Back home on Friday

Please remember little Austin in your prayers...this is going to be one long week and we are really praying that this trip will shed some light on his condition.

I will post the first chance I get when we return...
Until then...
Wish us luck!!

Tuesday, March 10, 2009

Breathe in...breathe out!!!

Eating some yummy 'nanas!

I feel like I've been holding my breath since January...

I think I can finally exhale now...now that the VMR is approved!!!! And, we got our airline tickets and hotel reservations. We waited 'til the last minute on that...and we paid dearly. But, lesson learned! I didn't know what else to do...

We will have to leave on Saturday instead of Sunday...Sunday flights were nearly booked and outrageously expensive. Even an extra night in the hotel is less expensive than leaving on Sunday! Crazy...

I'm still in awe over the Puffs. He's been eating them like a pro! One right after another...I can't even describe how important this is to me. We've been striving for this since last summer. Before Infantile Spasms even entered my vocabulary, I always pictured Austin sitting there in his high chair eating Cheerios. I think I might have even imagined that while I was pregnant with him. So, when the time came that he was supposed to be doing that and wasn't, I was devastated. It marks such a huge milestone in his development...combining so many of the skills we've been desperately trying to help him achieve -cognitive (it's food, eat it), fine motor coordination (getting them to his mouth), and oral motor (chew, chew, chew!). This ranks up there with walking in my book!

We can also add to that...spoon feeding! Well, sort of...I really think he's grasping the concept -just needs a little help with the coordination. He's got the right idea...get the spoon to his mouth. Now, getting the food from the spoon to his mouth is still a work in progress! Then we'll have to work on him getting the food onto the spoon himself...should be fun. I can just see it now, me scrubbing bananas and sweet potatoes off the floor..and the high chair...and the walls!!! Can't wait!!! :-D

Friday, March 6, 2009

VMRs and Puffs...


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.



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!

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

Wednesday, March 4, 2009

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.

Tuesday, March 3, 2009

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!