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!

Unbelievable!

I just couldn't resist the urge to tell you all what ended up happening with the epilepsy clinic and the helmet ordeal...

I decided yesterday to give them the benefit of the doubt. Instead of stalking them by phone yesterday wanting to talk to someone, I tried to be patient...to see if they would actually call me back. Well, of course they didn't yesterday, so I kept my cell on the nightstand last night in case of an early am call. Still nothing, so I called back at 9:30.

The lady who answers looks up our info and says, "Oh, she mailed you a script for the helmet."

Seriously??

Seriously?

Unbelievable...

The last thing I was told yesterday when I called was that someone would be calling me shortly to discuss our options in helmets. Hmmm. I guess they just assumed that I would wait patiently while my child is constantly hitting his head and just figure it out when we got the script in the mail! That still doesn't help me much.

I could go into a lot more detail on this one and why it's making my skin crawl, but I think you all get my point without all the nonsense.

Bottom line...

Those people are unbelievable! Eeerrrr.

We gotta get a new team!



BUT, besides all that...

Austin is doing well. We had our first increase of the vigabatrin last night. I haven't seen too many spasms...Maybe 3 or 4 so far. It's close to 11 am now, so we will see as the day progresses. So far so good though!

I think he's cutting several teeth right now which is making him SUPER loud! He's trying to tear into everything in sight! So funny to see him try to stick his whole fist in his mouth!

Unless something major happens between now and Friday, I doubt I will have a chance to get on here much. We're doing 2 days of Thanksgiving! Why didn't we start doing this sooner?? Oh, wait because of me! Miss traditional (me) just couldn't stand to have turkey on any other day but Thursday! Now, I'm thinking how much easier it's going to be on everyone to divide it up. No having to eat and run on to the next family!

So, Happy Thanksgiving to everyone! And forget about those diets!!

Bubble Boy

Yet another boring-post-day. Nothing...Nada.

Spasms are a little better amount-wise...but intensity...Whoa. He hasn't walked solo since about 11 am. He had a slam on the carpet and that was enough for me. He cried, I cried, and our social worker almost cried. It just breaks my heart knowing that it's dangerous for him to do what he loves most of all. Walking.

So, I got busy trying to find a protective helmet immediately after the social worker left. I called the insurance company first. Then the durable medical supply places. Then our epilepsy clinic (for recommendations). Then got online to check them all out again. Everything is set for when we actually choose the one we want...After we get a recommendation and certification from the epi. So, surprise, surprise, that's the only thing holding us up! No call back...as usual.

I'm giving it until noon tomorrow and I'm going to use my best judgement to order one. The longer I wait on them, the longer it will take to get the ball rolling. I probably know better what he needs anyway. I'm the one who knows exactly what gets impacted on falls...I just thought it would be helpful to have someone with experience recommend a good one. There's several to choose from.

I'm not giving up yet on the vigabatrin, but I'd like to be prepared if it doesn't work. I've already cleared out all the "problem toys" that make me a nervous wreck for him to play with. I thought that would calm my nerves a bit. And it did...until he started hitting his head on the floor so hard. Now, he's back to being "bubble boy". That's what I need...bubble wrap for every hard surface in the house...hmmm.

Anyway, he's been such a sweetheart today despite Mommy being so controlling! I've been getting tons of smiles and giggles! He's coming around in that department. Much more interactive. So good to see...I missed that so much!

Madie and Trev, I'm thinking of you two!

Thank you!

Just a quick post to thank a couple people who have kept me sane today...

Mom, thanks for the encouragement to keep it going despite the fear. Not one tear shed since we spoke.

Jen, thanks for sending me to Connor's site. What a fighter! What a strong Mommy she is too. It made me realize how much I need to focus on what he IS doing. My Austin IS rolling over...he's WALKING! He's not seizure free, but he's an active, happy baby despite all the seizures. Yeah, he's delayed in a lot of areas, but he's starting make a little progress here and there.

We WILL make it through this. If vigabatrin's not the one, we will keep searching until we find THE ONE.

Maybe tomorrow

Sorry so long since an update. Honestly, I haven't really been in the blogging mood. The new pressure of the vigabatrin trial has been seriously taking a toll on me.

I can't say one way or another if anything is happening yet. One day spasms are low and he's in a great mood...the next is the complete opposite.

It's been 6 days so far. Nothing to celebrate yet...I'm trying to be patient and remember that 3 days, 5 days, and even 6 days is waaaay to soon to start making assumptions. But, there's still a part of me that's disappointed that it's not making any difference yet. I wanted so bad for him to be one of the ones it helped in 2 days. If anything, after 2 days they were worse...then better by day 4. Now, today, they're worse than they've been since we started. 67 in 2 1/2 hours. That's with a baaad cluster of 55 though.

So, it's too soon to report any major news. Every day is different. That's why I didn't update when he only had 20 one day (which for some kids that would be a bad day...for him it's pretty good).

We are trying to take it one day at a time, and this day stinks.

Maybe tomorrow.

The Million Dollar Question

I really don't remember exactly how it started. The debate Chad and I got into over immunizations and the link to Infantile Spasms. Did the DTaP play a part in Austin's seizures? We may never know. But, I certainly have my own ideas...whether they'll ever be confirmed...don't know.

I don't necessarily think that it caused it. I do believe it triggered it. I wish I could say that I knew for a fact the vaccinations caused it. Then, I would have someone or something to blame it on. But, I don't know that, so for now, we will just have to continue to be cautious with future vaccinations. Like I said in an earlier post, we did not get any one-year vaccinations. We may end up getting all but DTaP later, but I doubt we will ever get pertussis again.

Of course I want the secret to curing my baby's seizures more than anything. But, what I also want to know that would maybe put my spinning mind to ease, is a cause. Any cause. I want to know why my perfectly healthy, happy, developing six month old suddenly started to seize. Why our lives were suddenly turned upside down and inside out. How one day he was perfectly fine...and the next a child with epilepsy. We may never know why, but that's okay...as long as it stops.

So, with that being said...We have a new drug in the mix as of today! Yep, we FINALLY got it started. We're starting slow and going to work our way up to a steady dose within about three weeks. I'm holding my breath until then...

Thank you all for your support and encouragement! It was nice to hear from Janna and Alana! Thank you two for your prayers and sweet comments! It was great to hear from both of you...it's been years! Hope you are both happy and doing well!

Hopefully within the next week or so I will be able to report a dramatic decrease in spasms! Until then, please keep little Austin in your prayers. We really need this one to work!

Beyond Words

It's here!!!! The vigabatrin is here!! (Ali, you were right!!!)

Now, the only problem...getting the epilepsy clinic to return my phone calls! I've been calling since 11 am this morning to get them to fax an updated script to our pharmacy...insurance won't cover the Zonegran refill until they confirm that the dosage was increased by the doctor. That's about right. I've called them about 6 times today. And just now, I realized that it's getting near 5 pm...I hurried to call them again...they're closed! Go figure. No word...nothing. I told them when I called the last time that I needed dosing instructions on the vigabatrin too. What kind of hospital is this? I was simply needing a nurse to call me! It takes like five minutes! C'mon!

Ridiculous...

But, I will definitely keep you all *posted* on this one...If it's gonna work, I hope it works fast! Man, wouldn't that be awesome!!! I'll let you know...IF I ever hear back from Houston!