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!

"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?