"SURE"

Just as I expected, I didn't hear from Houston until this morning. But, I did get a "sure" for the PET script! Then I hit them up for the rest! I'm praying for cooperation there. I need authorization for the VMR (the 23-hr EEG) and PET scan.

My poor baby has been snotty and drainy since Wednesday. He's been drooling so bad that I had to pull out the old baby bibs that I had finally packed up. Poor thing won't close his mouth! He started refusing bottles on Friday, but last night I FINALLY got him to take one! He took one for Mom on Friday night, but Saturday he wouldn't take anything. I ended up having to give as much as I could out of a cup. He wasn't too crazy about that either...but he needed some milk! I'm relieved to say that he took one this morning too, no problem. His nose is still a little snot faucet, but at least he's drinking more now..

Seizures are about what I'd expect...up there. I tried giving him some of his prescription cold medicine, but I noticed his spasms go up, so I put it away. Someone told me that anything with an antihistamine will lower the seizure threshold. They're still up even though he hasn't had a dose since Friday...I'm just assuming it's because he's sick. So we've been trying to fight the sniffles the old-fashioned way. Wish it worked! We've done aspirators, nose drops, vapor baths, Baby Vapor Rub, you name it! Guess we'll just have to wait it out.

I have to thank Mom for fixing Austin up with his play yard! OH, it has been soooo nice having that back! I haven't been able to put him in there since probably Christmas...so, I've been short on places I could safely put him while I do little things around the house. She padded the rails where it's Austin-friendly now (he'd grown to the point where he could hit his face on the side if he had a spasm)...He's enjoying the extra freedom so much!

A nail-biter...

I did it.

I asked for the script for the PET. And, just as I expected, I worked it into conversation. I caught the nurse a little off guard, but she explained she would forward to Mr. Doom & Gloom..No word yet. Can't wait to see what he says...

And there's more. Not only do I need the script for the PET, but ALL the pre-determination paperwork has to come from him for insurance approval. I'm terrified at bringing this one up. I just found out for sure minutes ago that I need this. The nurse I've been dealing with from Detroit has been trying to get around it, but it's not happening.

I really did try to get our current doctor in on this. Remember back in November, I was nervously awaiting a phone call to confirm whether or not I was onto something? I got a bunch of irrelevant nonsense back. I really did try. But, do I remind him that no one listened if he sounds insulted that I want another opinion? Would he even be insulted in the first place? Why am I so worried about insulting a doctor that has shown no compassion for us? I can't understand why I'm so hung up on this...This situation should be the least of my worries right now, wouldn't you think? I'm so scared that he doesn't agree that there's a focus and I need him to. He has to document a medical need for these procedures. A medical need meaning there's clinical evidence to suggest a focus exists. There is none. His staff blew me off. All I have is Dr. Chugani's opinion...and he cannot complete the paperwork for me. He's never seen Austin.

I spoke to the nurse at 2:20. It's 3:33 now. I have this terrible habit of picking at my cuticles and biting my nails when I'm nervous or anxious...My thumb is already bleeding. Of course an hour is waaaaayyyy too soon to expect a call back!! Knowing them, I may not even hear back from them until Monday! Maybe they'll surprise me so I can spare the rest of my fingernails!

So much to say...so little time!

I probably have maybe 15-20 minutes before little one wakes from his nap and wants his lunch...I have tons to talk about, but I'll probably be splitting it between posts...

First, I've got to fill you all in on why I've been so out of touch...Chad's been working like crazy and it's been just Austin and Mommy for the past couple weeks. Every free moment I've had lately has been trying to keep my DVR from deleting my favorites shows! There's not much time for TV watching anymore, so that thing is filling up like crazy...gotta watch 'em! Naps are no longer for chores...that's all Mommy's got nowadays! And, honestly, I haven't really known what to post lately. We've been on such a roller coaster...I'm afraid that by the time I've posted great news, that it will be old news. Good days come, but everyday is different. Those great days are usually followed by the dreaded days. But, I figured that every one of you who check in with us are reading for a reason. You want to know how Austin is doing. That isn't to imply that I don't have anything good to share...I've got tons! As the saying goes...I'm just trying not to count my chickens before they hatch! I was putting off sharing because I was afraid it would change.

Soooooo....where do I start???

Ah, my little cry baby! I say that with much affection! No, really, I do. Have you ever heard a parent say that they're thrilled to have their little one pitching fits?!! Well, I couldn't be happier to tell you that Austin is FINALLY getting some say around here! I think it's quite a 180. He's never been so opinionated before. It's always been the one tone whine...unless he was hurting..On a few occasions he would have an outburst, but for the most part, he'd just go with the flow. And if he was unhappy...just whines. No real cries. Boy, that has changed! Whether it's him ready to get in his bed, or me taking away his paci for meds, or even the sight of the dreaded bib, he's telling me what he wants...and doesn't want! It's such a breakthrough for him. He's never expressed himself like this. He even kicks and screams when I take him out of the bathtub! It's just further confirmation that his personality and cognitive development are coming around a bit.

He's also quite the giggler these days too. I haven't seen him laugh so much since pre-ACTH. It melts my heart to see him laugh again over silly faces and noises. We saw this Elmo Live doll in Walmart the other day...Elmo talked and waved his hands and gave kisses...I must have played that for him over 6 times. Austin got the biggest kick out of that! How nice it was to see such a reaction again! I came pretty darn close to paying the 60 bucks for that silly doll! ;)

The seizures continue...unfortunately. Some days are better than others. Ironically, they've been better the past couple of days than they've been in a couple weeks. I say ironically because he's just come down with a cold. You'd think they'd be higher than usual...Strange.

We're still working on Detroit. I just found out today that I will need our local doctor's cooperation. Great. I was really planning on ducking out on that one. I thought I'd almost made it without them. EEERRR!! I really didn't want to involve them...BUt, they're the ones with all the clinical info and I need a script for a critical test. Darn insurance needs them too. Like I told Mom earlier...this will be a HUGE step for me. Awkward confrontations are not my thing. And I KNOW this is going to be awkward. I can just see it now...when I call them...Um, yeah, Austin has a cold...what can I give him that won't interfere with his seizure meds?...oh, and by the way, I went behind your back to get a second opinion because I think you all are heartless, insensitive, and incompetent...can I get a script for a PET scan? Thanks...
Getting through this is going to be a turning point for me. I've been avoiding it like the plague...We'll see how this one plays out. It's got to be done for Austin and I'm going to do it if that's what it takes. I'm just dreading it...to say the least.

I'll definitely try to post more often. I've been missing it!
I still have lots to share, so check back later!

just a little consistency, please!

I know it's been a while since a check in...I've been holding my breath for a week now. When I first gave Austin the Depakote, his seizures gradually decreased for several days...then, as usual, when I started thinking that something was working, they started to increase again on Sunday. It was like a painful pinch waking me up from a dream. I know from the past 7 or 8 months that Austin's spasms have never been consistent. They go up...way up...then gradually go down for a while...then back up. There's only been a couple of times that I let myself entertain the thought that a med is actually doing something. That's when the decrease in frequency is so dramatic that I think surely they're going away. But, just like last time, they came back to his normal range of about 50 a day. They were never gone...just waaaaay down. He seems to be better today than yesterday. Only about 5 so far (by this time yesterday, he'd already reached 20). We increased the Depakote to 2mL 3x a day...and decreased vigabatrin to 500mg/day. He'll be completely off vigabatrin by next Tuesday...

There's some good and not so good news in the development department. The good news is that he's completely age appropriate in his gross motor skills! I pretty much knew that, but it felt nice to hear it. He's walking, squatting, reaching between his legs, etc. The tough part was hearing where he is in some other areas. He's still at 4-6 mos on some stuff. My heart sank even though I've known that he's behind. Just hearing it made it a little more real. I'm trying not to get wrapped up in the numbers...I'm trying to be patient and understanding that maybe he's not going at the average pace, but he's going...just at his own pace. He's so happy...He's making some awesome new noises -the latest...we call it the motor boat...so far cannot be duplicated by me or anyone else! That's what I forget sometimes... that although it's important for us to encourage him to gain new skills, it's just as important to celebrate today and all the progress he's made already. And I can't mention celebrating without sharing the best moment with you all. He gave me two (TWO) kisses the other night! He even reached to me like he was trying to hug me! My heart melted and tears started to well up in my eyes. It was the first time he's initiated genuine, outward affection in months...since the last post I made about getting a smooch from him. It didn't last long, but it was such a moment. It was as if he just knew that I needed that right then.

Jamie and Madie...thanks for the welcome to the Depakote club! I'm crossing my fingers for all of us here! And I'm so proud for Madie in her stander! What a big girl! Keep it up!

Danielle...I'm with you on Detroit! If there's one thing I'm sure about it's that Austin's right hand issues are linked to his seizures...and if I am going to have confidence in anyone it's Chugani. I'm still trying to get everything coordinated...slow going.

You are what you eat???

One of my favorites...taken by Mawmaw (aka Grammer)

So, the pedi confirmed my suspicion...it's the veggies making him yellow! I pretty much knew that, but being the nervous Mommy that I am, I needed an expert to tell me! Especially since our new med Depakote (it's not Depakene like the nurse first said) can have serious adverse effects on the liver.

Oh, and speaking of...when I got the Depakote filled and brought it home, I sat down to read the info that came with it..as I always, always do...Even after researching online and finding out how many kids are on it, I was floored at the warnings on it. I decided to hold off on giving it to him until I spoke to the epi about it...

It's a long story, but I got the feeling that he really didn't appreciate my questioning his choice of meds. Call me crazy if you want, Mr. Epi, but I was NOT going to give Austin a drop of that stuff until it was discussed with me! I think since he is my child I have every right to be informed -without seeming like a loon!

Sooooo, I finally ended up starting it mid-afternoon yesterday. Nothing yet...

Guys, I'm totally overwhelmed about what direction we need to be going with his treatment. One minute it's Detroit, then a new epi, then MRIs...there's the keto diet and other AEDs...My brain just feels like one big ball of mush. NOTHING is making sense here! I hate, hate, hate where we are taking Austin for treatment...but, we really only have one other choice without going across the state. Then, say we do that...the new epi will want their own testing done...well, where does that put Detroit? Why would we repeat tests? Dr. C said that there's no reason to repeat the MRI because he knows for sure he would do one. How does that affect how a new local epi would treat Austin's seizures? Then, on top of that...coordinating these tests in Detroit is becoming quite a challenge...let me just say INSURANCE. They want evidence that suggests there is a focus to authorize further testing to find it. ????? There is none! All I have is Dr. C's opinion from an email! None of his previous tests (EEGs, MRI, etc) picks up anything...I thought that was the whole point of seeing this guy. I'm lost....Where is my instruction manual???

There's my vent for the day...sorry. :)

Out with the old...

"Seriously?? Did you really just stick that bow on my head, Mommy?"

It certainly came as no surprise when I (finally) got the call back this am from the epilepsy clinic. Taper off vigabatrin. Throwing the towel in on this one... The last increase showed absolutely no improvement soooo....That's it...

We're going to give Depakene a try. Not sure what I think about this one. I don't know much about it, and what I have researched doesn't help so much. It has crazy bad side effects...But, from what I've read so far, the side effects are typically due to certain known conditions and drug interactions. I'll be doing more homework before giving Austin's first dose.

The search continues for a new doc. I'm torn between two different hospitals in the area...But, I do know with much certainty that we will NOT be waiting until June 30 to be seen. That's just absurd to have an eight month gap between appointments...when the seizures are still not under control. The typical length of time between them should be 3-4 months!

Anyway, I'm still trying to get Detroit coordinated. I did find out that it's possible to get the testing procedures done during the same week as the initial visit. Yay...maybe that will limit our trips out there. I was told the first time that Dr. C would have to see him and then order the tests -which would be done during a separate visit.

Austin is still walking up a storm! He gets so excited that he sometimes gets way ahead of himself! He's trying to run, but his little legs just aren't going fast enough! He's still making awesome sounds and eating like a horse. We finally got off the formula!!! Now, if we could just get him to eat something besides baby food! We just can't keep enough on hand to feed the little rascal! He just doesn't like to chew on anything besides his hand or toys...he tries to swallow everything whole and obviously gags when it goes down. Even Stage 3 baby foods are an issue. And when feeding coincides with meds...I'm not taking chances on vomiting! But....we're working on it!

Oh, and I found out this am that the genetics test (ARX gene mutation) we had to repeat due to an inconclusive result, came back negative. That's one more down...however many to go....

I'll be updating on the new med...I don't expect to see any results immediately, but we can always hope, right?

Monday, Monday

Even though I'm not "technically" working, I was so dreading today anyway!! Chad going back to work...the end of the holiday weekend...resuming the normal day to day... Yuck! I didn't do anything special over the weekend...just lounged in my pjs and played with my Christmas goodies...but man, was that nice!

I had tons to do, but I did it a little at a time...I organized my kitchen (somewhat) for all the new kitchen stuff (I racked up in that department!! -my dear husband spoiled me rotten -not to mention my mom and mother-in-law!)...I reorganized our closet...Chad totally remodeled it in one day and we doubled our space! I played and played with Austin and all of his cool new stuff...a rocking horse from Santa, a big stuffed (and safe) puppy from Grammer and Pawpaw, a ball pit from Aunt E. He also got a toy from his Aunt Jill that he actually tries to work...and those little beanbags that came with the toy from Nana and Pawpaw...he loves to squeeze those things! He gets totally loud with those! But, as usual, his favorite thing is still walking, walking, walking!!

I was hoping that he'd be a little more excited about all the Christmas happenings, but I think the vigabatrin increase had a lot to do with his moods. He just wasn't up for much at all. After a couple days, he seemed to improve mood-wise, but we're still seeing lots of seizures. His clusters are way way down, but the "slams" are still going strong. The helmet was not much help since everywhere we went still had hard floors and we couldn't let him walk freely. That probably had a lot to do with his mood too. By the weekend, he was happy and squealy as usual!

Oh, man...just got off the phone with our epilepsy clinic...we had an appointment for Jan that was cancelled by them a while back and rescheduled for Feb 27 -which I thought was ridiculous...then, the other day, we got a letter in the mail saying that the Feb appt was going to be cancelled as well. Now, the next available appointment isn't until June 30! That is totally nuts! I guess we have no choice but to find a new specialist, huh? I tell ya, the drama with that place never ends!

Anyway, I hope you all had a wonderful Christmas! I'm recovered somewhat physically...but my house is a different story! I have a nice and neat closet and kitchen though! :)

Vigabatrin's last chance...

I've been quite the slacker lately, haven't I??

I'm sure you all know how that goes though...the holidays (and Austin's lack of sleeping) have kept me tied up. But, I've been trying to enjoy the holiday movies and decorations too!

I'm assuming it must be the vigabatrin making him restless at night. It's almost entirely predictable now...he conks out easy at first...wakes up about 45 minutes later...finally goes back to sleep after about 2 more hours...then up again by 3:30-4:00 am...til 5:30-6:00 am. It's sadly reminiscent of the ACTH days...although not quite as bad (thankfully!).

We've given the last increase plenty of time to work, but it's just not going to. We're increasing one last time starting tomorrow. Either that will help, or we will probably start to taper him off it entirely. We're clueless as to where we'll go from there. There's the good ole keto diet...but Chad and I are not in agreement on that one. There's Detroit...but that's not a treatment, only a chance to find out if we will have new options to consider down the road. There's more meds, but I'm so sick of AEDs I could scream! It's overwhelming right now, so I'm just trying to focus on getting through the holidays and making the best of it all.

This is the first time in about 7 years that I haven't had to work like mad through the holidays (I don't count last year since Austin was a newborn and I was still recovering from the C-section! -I didn't exactly have time on my hands then!). It was so wonderful this year to finish shopping and wrapping in time to actually contemplate baking! I just need to get that started, huh?! :)

I'm certainly excited to tell you all that Austin's been making some great new sounds! He's not quite babbling but I think he's getting there. When he walks he loves to Yee-yee still and now he's added Gee-gee to the mix! He's gurgling again and I just get so tickled listening to him!

As much as I'd like to, I'm afraid I probably won't get a chance to post again until after Christmas...I'm just trying to be realistic here! I've got to get busy, busy...there's our regular hectic evening schedule tonight, last minute shopping on top of that...then baking and a couple more gifts to wrap! Is it crazy to think I can actually get that done by morning??? LOL

Of course I will be checking in as soon as possible and hopefully posting great new Christmas pics!

Merry Christmas!!! Love you all!!!

Who'da thunk! LOL Snow in SE TX!

Snow and Helmets...

The only good thing I can say about Austin holding a sleep protest last night was catching the record-breaking snow out my window! I think the last time I saw snow accumulate here was when I was about 7 or 8 years old...We get some flurries every now and then (last I remember was Christmas Eve 2004), but nothing that sticks. So, I was excited that I caught it before it melted this morning. We got up late, so by then, most of it was melted already...and at noon, nothing but water dripping except for the small amount still left on my windshield. I felt like a little kid last night...I ran out to touch it and had to wake up Bailey to go check it out! She was freaked! Like, what's all this in my yard? She ran all over sniffing and inspecting. Cute.

The helmet finally made it in on Wednesday. I drove in a massive down-pour to get that thing! It doesn't look as bad as I was expecting, but it's still not exactly discreet. It doesn't have a face shield and he still can't walk on the hard floor or stand over hard toys, but at least I can let him go on the carpet again. You should have seen that face when I put it on him and turned him loose! The biggest smile you've ever seen! He made so many new sounds out of sheer delight! He's hooked on Yee-Yee-Yeeeee now. He just walks around in circles babbling and screaming!

We've finally reached our target dose of 1000mg/day. Unfortunately, we have yet to see an obvious improvement. It's only been two days since the increase, so we're still trying to be patient. Since Austin is quite a big boy, I think there's a little wiggle room on the dose too. He's still not at 100mg/kg yet. We shall see....

Just around the corner...

I think the above is the picture that made it in the cards last year...

And the one below was the intended...imagine 30 copies of the wrong pic!! :)

With the latest cold front that blew through and finally getting our tree up, I've had no choice but to get with the excitement of the holidays. How can I not with the chill in the air and all the red and green in the house?!

I LOVE the day after Thanksgiving...it's when I allow myself to break out the Christmas cds...I have two faves...Jewel, of course (Al, I'm still faithful to this one -after, what, at least 8 or 9 years and 3 copies later!) and my Sarah, which I think I got two Christmases (lol, sp on that one?) ago?? I think. I love some Bing, but sad to say after buying two copies, I can't find either of them! I'm a traditional freak, so I can ONLY listen to them between Thanksgiving and Christmas...after Christmas, in the case they go not to come back out til next year!

My mind is turning with ideas for the Christmas card pics...Last year we took some last minutes by the tree...I was definitely not a good planner with a colicky 2 month old at the time. I even think the cards came out after New Year's! LOL I'm still cutting it close, but as long as they get out by Christmas this time, I'll be satisfied!

I can't divulge too many details, but we got the outfits (yeah, plural for BOTH our babies) a couple weeks back...and it may be a little Grinch-y...hmmmm. That could change..we'll see.

I must, must, must be realistic...an ashamed, costumed dog and a teething 13 month old...I'm already thinking of Plan B's. I know improvisation is inevitable! :)




By the way, helmet should be here Monday! :)

Hospital talk -the final straw

Austin in action!

Between the ongoing arguments with our epilepsy clinic and the never-ending helmet issues, all I've done the past two days is research hospitals and specialists...I'm so consumed with the need to get Austin the best care possible that I have barely held a conversation that doesn't involve IS!

But, I've finally made up my mind...we are done with our current epilepsy clinic. I tried to imagine what this ordeal would be like if we had a team that cared about us and the outcome. Not having to worry about fighting with them or riding their tails would take so much off my shoulders. So, thanks to my mom, we now have an impressive list of new clinics and hospitals to check into. Of course, they all boast qualifications and dedication, but Chad and I know what we want and know that the paper qualifications can be deceiving. Look at our current one...#5 in the nation for pediatric neurology...you'd never know it by dealing with them. It's not just because they haven't "fixed" my son by now, but they certainly don't act like a 5th ranked provider. Maybe their rankings have gone to their heads and they no longer have time for us. I think that patient dedication and compassion is seriously lacking there and their BIG doc's are stretched too thin. It doesn't do us much good to have a BIG doc if we can't see them or talk to them. The nurses guard the phone and screen and filter our questions and concerns...not to mention them giving me their condescending responses and advice.

So, yesterday morning's conversation with them was the final straw. I had reached my limit of insensitivity. I told them exactly what I thought of them and their "procedures"...I only wish I would have "went off" on someone that mattered there! I'll spare you the gory details of the call and just leave it at they gave me the confirmation I was looking for in my decision to change hospitals.

We will all be much better off with a team that cares even if we have to drive across the state to see them!

I'm just waiting for Austin to get up from his nap so we can go get our helmet ordered. I wish we could have done this sooner because we'd probably have it by now. I had no idea it would be such an ordeal...I'm excited to get it though so I can relax a little with him. He'll be soooo happy to get back out on his own and walk! There's no telling what he'll be able to do once I ease up a bit. I know he senses my nerves...I just know it. He'll be so playful and proud, but as soon as I run up to him and try to guard him he's not interested in much anymore. Now, I won't even let go of his hands...but, that's about to change, I hope!!

I'll keep you all POSTED!!

Still waiting

One more day until the next increase...

Will it be the dose that works? Hope so...

We're still fighting these big drops. Man, if it wasn't for that, this whole mess would be soooo much easier to deal with. But, all we can really do is wait it out and try to adjust our lives around it. Like the helmet or padding this and that. And pray that this will all be over soon.

But, you know, I really have to say that Austin's smiles make this battle worth fighting. He is such a happy boy despite everything he's been through. All it takes is a little bit of floor space and he's good to go! Squealing and laughing and all his"AAHHs" and "EEHHs". I can't help but laugh out loud whenever he walks.

The walking has been limited these past few days. I tried to create a temporary head support until we get the helmet, but I still fear that it's not enough. It's really hard for me to just let go of those little hands. That is ALL he really wants to do, so holding on is painful...and tiring because he wants to go anywhere and everywhere...but my back doesn't! I keep telling myself that it's just temporary...it's just temporary. Either the vigabatrin is going to do it's job, or the helmet will protect his little head. I can't see myself letting him go on the hard floor even with the helmet, but at least I will take more comfort in him walking around his playroom. And I know he needs that. He's such an independent little boy!

I hope you all didn't eat as much as I did over the weekend. I think I had turkey and dressing for 7 meals! I believe I'm good 'til Christmas! ;) But, man, was it delicious! And Austin thought so too. It's very rare that he will accept textured food. We're still on the good ole Stage 2's. When I try to sneak in a Stage 3, he lets me know that he's on to me...But, I guess the taste was worth the funny feeling in his mouth. He chowed down on dressing (mixed w/ a little cranbury sauce), dumplings, sweet potato casserole, broccoli cheese casserole...I couldn't believe it! And with a repetitive "Mmmm", with every bite! Of course I had to mash it all until it was practically puree, I was still impressed to see that he took it as well as he did...and enjoyed it! Grammer and Nana, y'all did good!