Monday, September 29, 2008
My Early Intervention coordinator told me she's never seen ANY mother so prepared. Excuse me as a pat myself on the back.....
I was ready with my arsenal of letters....for ALL her doctors stating why she needs a one on one nurse at all times while at school. I had hand outs on every type of seizure she has, the effect of recurrent epileptic seizures on the brain, web links to video clips of some of Ava's seizure types, and a complete two page list of every single time she's ever been to the hospital. Her complete neuro psych report, letters from the neuro to pedi, a representative from our local epilepsy center, one from our local special education advisory committee, and an advocate from RIPN (Rhode Island Parents Network). All people who spoke up during the meeting, asked questions I missed, and "had my back" at every corner.
I thought I was going to have to give the poor school nurse a brown bag to breath in after we gone done going through some of Ava's recent seizure scenarios.
As it turns out the school had been doing some preparations of their own in anticipation of Ava entering the school to receive special education services. To my surprise (and relief), the head of special education has had every intention of approaching the Superintendent to get Ava her one on one nurse.
My arsenal........was not needed after all.
Actually all the therapists, and the preschool teacher(s) were extremely appreciative to receive all the information about Ava's seizures, and seizure types. I also prepared a hand out for them detailing Ava's strengths, weaknesses, and how she learns best to allow them to get to know her a bit before she arrives. They felt much more at ease feeling educated about what they were dealing with. It felt good.
Even better.....I actually LIKE all the therapists.
Today was a good day.
On top of it all, I FINALLY got approval from my insurance company for our referral to Boston Children's to see the neuro and dietitian. Dr. Neuro called today to review the results of Ava's digitrace EEG. Same old story....Generalized spike and slow wave discharges.............
with an "mentionable" number originating in the left occipital region
Is it actually normal that I was excited? Excited about the fact that FINALLY she might be showing us a focal point? I'm actually hopeful that my daughter might be a candidate for brain surgery.
Lastly, we discussed how things have been lately, and what we're going to do about it. Our seizure control has been so poor as of late, and her myoclonics have begun to cluster regularly, to where she needs her "rescue med" (diastat) to break them. This is new for us. She also had a weird tonic seizure recently, and a month back had another unusual clonic seizure which we had to break with Diastat.
Dr. Neuro wants to wean Clobazam, and start Zonegran. He also wants us to STAY on the diet.
He's approached me about Zonegran numerous times. I just don't want to compromise her cognition or language skills (a side effect of Zonegran). But, at this point, her seizures are compromising them, so it's a catch 22. Zonegran and the Ketogenic Diet aren't exactly friends. She'd be at an extremely high risk for kidney stones, among other things.
Tonight I feel good that I was a voice for Ava today, who's speech they deem "unintelligable" .
Tuesday, September 23, 2008
Currently she's obsessed with the word "shut up". Mind you, she refuses to say her name. She refers to herself as "ME". Everyone in the family knows where she learned the dreaded phrase......listening to her beloved brother and sister in the car! Now, she blurts it out to ANYONE who is making eye contact with her! For instance, we were out to dinner Sunday night and a nice, sweet old gentlemen came up to our car (I was pulled around front to pick up the others) and stuck his head in the window to talk to Ava. Before the old feller could even get a word out Ava screams "SHUT UP, SHUT UP, SHUT UP". Now, mind you, sometimes I can get away with certain things because her language isn't always crystal clear....but....this time...there was no mistake.
If I could have crouched underneath the steering wheel, I would have! Of course, I apologized up and down, and thank God, he didn't seem offended. I'm sure her Digitrace EEG, wires coming out her head look helped with the sympathy vote.
So we've all decided to just ignore her when she says "the word". Anytime we've tried to correct her, she says it even more, even louder, and pretty much....all day!
So if any of you are in Rhode Island, walking to your car, or in the grocery store, reading off your list or talking to a friend, and you hear my little angels voice in your ear.....telling you to "shut up" just keep on walkin' *LOL*.
Don't take it personally, I give it another 2 weeks and it will be history!
Thursday, September 18, 2008
my faith - without this....I would be nothing.
laughter - laughing has always been such a big part of my life....thanks to my mother. I LOVE practical jokes and am a total prankster (when I have time). I have a quirky sense of humor, and I'm KNOWN for laughing at inappropriate times (yes...I'm a am a former childhood church laugher). In fact, NOBODY ever wants to sit next to me at church to this day, because THEY start laughing...when I'm being totally serious (especially these days *LOL*).
my family - I really just love down time with my family, especially the kids. Those random days where we're all hanging out or playing, are totally priceless. It's just....what life's all about. What did I ever do that was important before I had children!! I also look forward to those lazy days with the cousins and parents just laughing and chilling out.
Absolutely, hands down, number one fear
Not fulfilling my purpose in this life
**no explanation necessary**
failure - of any kind. This fear has held me back from many, many missed opportunities, but taught me some invaluable lessons in life.
making mistakes as a mother - the most important thing I've ever done with my life is creating (with some help...) three lives. Three unique, beautiful human beings. I know I can never be perfect, and mistakes will be made.....but I want all my children to be genuinely good, caring, intelligent, successful human beings. I want them to grow up feeling loved and safe, treated equally, and fully equipped with all the tools they will ever need to make a valuable contribution to this world.
Coffee...Coffee...Coffee.... I've tried to give it up three times...
a really good glass of red wine! .....nothing else needs to be said!
keeping it real - anyone who knows me knows this already. I'm a stickler on this subject. I absolutely cringe around people who constantly put up a front. I'm as real as they come.
Three Interesting Facts
I have a motorcycle and LOVE to ride (especially with the kids).
I'm terrified of horror movies, and can't REMEMBER the last time I watched one. (I want to say high school!)
I 've been to Africa...three times!
Tuesday, September 16, 2008
When I'm feeling sorry for myself..........because NOBODY could possibly understand what we go through. The sleepless nights, the YEARS of no sleep.
in my car.......on the phone to my husband......and as I lay down to sleep......with my 2 year old next to me because she can't sleep alone......because she might die in her sleep.....from a prolonged seizure.
The guilt....that I'm not doing enough.....that I haven't done EVERYTHING THAT COULD POSSIBLY BE DONE for my daughter, to help her live a normal life. That I'm not smart enough to understand all the in depth medical terminology tossed around me on a daily basis.
God....why couldn't you have picked a Harvard Grad. to take on this job *LOL*
Nobody mentions.......the guilt.
So I've gotten totally off track from the story I wanted to tell so here it goes:)
: and how cool would it be if the people involved in this story actually read this and freak out thinking how such a thoughtless statement.....affected someone else right down to their core:
When Ava was in the Pediatric Intensive Care Unit this past February with Flu/Pneumonia (caused by aspirating due to a 45 minute status seizure), then a case of life threatning sepsis, we ran into another family in the ICU lounge. Their son was in critical condition after suffering a bowel obstruction, and emergency surgery. Their son had Cystic Fibrosis.
We had seen each other for over two weeks...here and there....and we shared bits of information with one another while we were passing through. On our last day in PICU, after 21 days in Intensive Care, I ran into them that morning.
We exchanged e-mails (of course, I lost the teeny, tiny, piece of paper I shoved in my bag) so I was never able to contact them, although maybe they still have my e-mail:) We got to talking about friends and family, and I said "I struggle so much because nobody in my life REALLY understands what we are going through, and how hard this is....day in and day out".
He turned to me and said....so simply "I would never want any of my friends or family to ever understand what this life is like. I would never wish them to even live one day like this."
It just hit me like a brick.
This man, as his son was fighting for his life, still, never coveted the one thing I can never get off my mind. The reason I'd just rather walk around angry and bitter, because nobody understands. Whatever they say, do, or don't do (my major complaint) is just always wrong. All wrong.
So when I get in this mode, my heart takes me back to the PICU lounge. Over, and over again. Until one day..I'll finally just get it.
It will be one of those moments that I get an overwhelming peace, and know in my heart.....I can just let this go.
Monday, September 15, 2008
Both Matt and I have found that many who ask.......don't really want to hear the answer if it's anything other than "great, wonderful, better than EVER"
So warning to all....if your one of those people......... don't read any further. This won't be an easy read & won't have you feeling all warm and fuzzy at the end.
People just ask to be nice, as a polite gesture.....and I get that.....I'm guilty of it myself in my "before it happened to me" days. But quite honestly, these days, it really gets the best of me. Don't ask if you don't want to hear the truth. And when I tell you exactly how she is doing....don't cut me off, pretend you have a phone call, or say "awwwww...that's too bad" & go back to living your perfect life and never give us a thought or a prayer. Just don't ask.
Maybe I shouldn't be posting tonight............................
Ava has been having clusters of "new" seizures lately which consist of her eyes deviating upward and blinking constantly. We've had to use her rescue med (Diastat) many times these past few weeks to break these clusters. Strange enough, the myoclonics we've tried so hard to nix, have all but gone (maybe 3 or so a day) We've also noticed some absence seizures rearing. It seems as though ALL her major seizure activity has shifted to sleep time. She's been having horrible myoclonic clusters almost every night. I upped her nighttime Clobazam dose hoping it would help, but nothing.
We've had to rouse her nightly to either give her Diazapam or Lorazepam to take the edge off & help her sleep.
My poor baby. She can't even sleep anymore. The diet, however, is in question.
It will all come to our 3 day digitrace EEG we will be getting done this Thursday. I'll have a lot to think about next week. So until next week, we'll sit tight. My heart is so heavy tonight. I'm very physically exhausted from the nighttime seizures, but mostly, I'm scared.
Scared of what the EEG might say. Things have shifted seizure wise, and I don't like the way things are going. I'm scared of what is going on inside her brain, and that it could mean Ava may loose all the progress she's made. Yet, even with what I'm seeing on the outside.
I still believe.
I believe that God is in control of this situation. I believe that I can give all this pain, heartache and worry and he will turn it into peace beyond understanding. I believe that one day we will overcome this monster that has stolen our happiness, our sleep, and our precious family time that is all but a distant memory sometimes.
So to those of you who do care, and pray...for real.
We need it. Especially this week and next.
Saturday, August 2, 2008
Ironic as it is, Ava's been doing wonderfully since a few days before our consultation at Mass General. Go Figure. So, that's about 2 months or so. She's been averaging about 10-20 myoclonics per day, with maybe one or two causing a fall. She's been feeling good, and her speech is continuing to get better every day. Her physical therapist is highly impressed with the progress she's made, and she's almost "up to snuff" with her peers. Our speech is still quite behind.
She really is such a tool!!! Her new obsession is carrying around pocketbooks all day (and night) long. We've all learned to stop searching the house & car for our lost possessions....because their usually....in her purse(s)!
July consisted of : A 24hr EEG study, a complete eye examination, bloodwork for her Genetic Test (SCN1A mutation). lots and lots of meetings with CEDARR, vaccination talk, and lets not forget the phone calls......tons...and tons....of phone calls. We completed our process with the CEDARR program (to help us with Ava's transition out of Early Intervention, and also to get her some respite care, so I can safely leave her with someone that's not US!!). We set up an appointment for a Neuro Psych. evaluation. We had Dr. Neuro write letters, letters, and more letters about why Ava needs a nurse on staff at school whenever she will be there, (and also authorizing her astronomical dose of diastat - rectal Valium (about 3x her normal dose) to break a status epilepcitus episode.
This month, I've clocked in quite a bit of time with phone conversations with our Neuro. About the EEG.......about vaccinations......and most importantly, about.........Is this as good as it gets????
I've actually been feeling great about Ava. She's happy, feeling well physically, and coming along so nicely in every area......but she's still having up to 20 seizures a day with numerous other generalized spikes that we don't see. Dr. Neuro says her seizures are only 1/2 a second long...which wouldn't even add up to 20 seconds per day. But in my mind, a seizures, is a seizure, is a seizure. And none of them are good. Especially for Ava's little brain trying to process information.
The pedi opthomoligist noted a distinct eye droop on the left side. This is something I've insisted on for 2 years. I've brought it up to EVERY neuro we've ever seen......with just the poo poo response of......oh...let me write that down.
Well, write this downs boys....IT IS REAL! Dr. Neuro, upon a quick initial report of the study managed to "slip" and say he saw more on the left side (which may explain the left eye droop she's had for 2 years, and her favoring her right side slightly) but after a full review of the study, he still insists her seizures start equally from both sides and generalize. He's maintained they are coming from deep within the thalamus, although he did say some were originating in the occipital area. Still, the same end result I've heard from every neuro "GENERALIZED EPILEPSY". I'm more confused then ever, and am waiting for the written report to understand it better. Our phone conversation was so loooong and we were dealing with soooo many issues (vaccines in particular), that I'm not sure I ended the call fully understanding exactly what he was saying about the EEG.
Although I did understand one thing.......
It looks better.........
A LOT better...........
"We're heading in the right direction"............
After all the crying, fighting, stressing, and EVERY twist and turns we've been on with this diet......we're all pleased at how well she's doing despite the few seizures a day we're still seeing.
Although, I'd like to being seeing NONE.
The clobazam has helped her soo much and we're only at 15mg. per day.....(Dr. T says she could go up to as much as 40) and for right now...it's enough. The only side effect we've seen is a bit of sleeplessness, but that's IT. Clobazam is on the list of one of my "good" AED's. Along with Keppra, which gave us 3 SF months around her 1st birthday.
I'm pushing for the 3T MRI. I just NEED it. It will close the door, and put my "left eye" suspicions to rest. Dr. Neuro said if the SCN1A test comes back negative.....he'll set it up. He even said he'll give me a BEAM study, yet he keeps insisting he feels her "answer" will turn up either genetic or some metabolic issue we'll never be able to solve. All 3 neuro's I've consulted have insisted a PET would not yield us any useful information for Ava. But I'm now at the phase that I just need to know, so I can move forward.
As weird as this sounds.......I've always been soooo grateful that, given her initial diagnosis of IS (Infantile Spasms), she is walking, somewhat talking, and happy for the most part.
I thank God every day for pouring his mercy upon our daughter. Most people might wake up in the morning angry, and bitter being dealt a "bad hand", but even as I'm making all her messy Keto meals (while we're still seeing seizures daily), and chasing her around for meds.....I'm grateful.....so very grateful for what we DO have, instead of dwelling on what we don't, or.....may never have. I've moved on from that place, and I hope I've finally come over the hump.
So somewhere in the middle of all this mayhem we managed to escape away with Madison and Christian (and 2 other friends) to Water Country for the day....thanks to Auntie Beth & Uncle Julio. Well I'll admit that it wasn't my first choice of an outing, but it still felt good....having a break from thinking!!!!
Friday, June 20, 2008
Before totally giving up on all the diet did for us, we just didn't feel right about taking Ava off it until we had a second set of eyes look at her to see if any changes could be made to help us regain the control we saw in the beginning. It appeared, last week, that "the cancellation list" really translates to the "never going to call you...ever...list"! We were NOT expecting anything to come of our MassGeneral hopes, and we were patiently waiting for our July 29th appointment with Dr. Bergin at Boston Children's Hospital.
Surprisingly we got a call 4:59 Friday afternoon to see if we could make it in Monday. Of course, we jumped at the opportunity. Both Matt and I really liked Dr. Thiele, and their super cool waiting room & blood lab in the next room! We talked a lot about meds, not giving up on the diet, and....the VNS.....gulp.
I had been pondering the possibility of the VNS for a few weeks now. My thoughts were.....why waste a year or longer on drug trials that most likely won't work and dope her up and hamper her ability to think and learn. All though both neuros understand our thinking.....they (our local one and Dr. T) both feel it wouldn't provide the control we are looking for, and think with some adjustments to the diet and playing with the meds, we can be in a better place.
I'm willing to give it a try. I'm still waiting for the nutritionist to give me her recommendations, and see how I can make it work. We're raising her Clobazam a bit, which I'm not too keen on (as it makes her VERY hyper). So that puts us at 20mg per day...it seems like a lot. But it IS helping.
I also found out yesterday that we FINALLY got our insurance approval to get our SCN1A genetic testing. What a long wait! We waited almost 4 weeks for our insurance company to decide whether or not it would be "worth it" for her to get the test done. It really blows me away sometimes. Ava has been suffering having seizures for over 2 years, with no cause determined, what is there to decide on???
So, since it's been so long since I've posted I'll fill everyone in on some family news (yes...there are actually other people in our family other than AVA *LOL*) Christian finished his baseball season with a great last game, and not after puking a few times afterwards because of the heat **that's my boy**! Both kids had end of the year performances at their school, and we are sooo proud of how well both of them did this year in school (despite all our drama around here sometimes).
They found an injured bird in the yard yesterday, and drove me nuts for hours. So, yes, I'll admit that I did put a make shift splint on it's leg (hoping it would fly, fly, away so my 3 kids would STOP touching it) to no avail. So after lots of tears, our neighbor made a little house for it to spend it's last hours in.
Is it wrong that I'm laughing about this right now????
Anyway, the following morning Ava cried for approximately 1 full hour because she wanted to hold the bird (who was out on the deck in the "penthouse suite). After seeing the look on my face, Madison & Christian had a "quickie funeral" for little Tweeter and we called it a day.
On a side note, this past Saturday we ran (or rather...trotted) the Matthew Siravo 5K road race. The kids did a race as well, and really got a kick out of it. So in hopes to redeem myself, a friend and I will be running another 5K race this upcoming Wednesday.
Thursday, June 5, 2008
That being said....I just couldn't resist sharing this with everyone.
Today, after 1 meeting with the school liasion (which didn't exactly go well), 1 speech therapy session, and 1 two hour Early Intervtion playgroup....I was feeling pretty drained, and really needed a pick-me-up. I decided to head to Starbucks (and order a very large iced coffee with lots of sugar!) before going home and finishing the day.
So we're waiting in line, and as I'm telling the barista my order....Ava screams "GET MOMMY'S COFFEE". I just couldn 't stop laughing! I guess it was obvious even to my 2 year old who had been examined and in therapy literally all day....that I was the one who needed something.....RIGHT NOW!!!
As stressful, and heart breaking as things can be sometimes....I sure do love having another little one. She might not be perfect, but at times, I just have that overwhelmeing feeling that she's exactly who she's supposed be. I don't know what the future holds for her, but something tells me.....she'll handle it just fine.
With a little coffee....I might just be o.k. too.
Wednesday, June 4, 2008
So let's start with the good news. We've made it passed our dreaded 8 week milestone. We've never made it longer than 8 weeks withough a major status seizure and hospital trip. This week will be 10 weeks...no staus epilepctus.
It's been so hard to see Ava struggling with the drop seizures again, after almost 4 months of "freedom". I've just been so sad to see this happening to her. She just wants to be a "normal" two year old sooo badly, and absolutely HATES when we have to make her take a break from the sun, or physical activity when she's having a bad cluster of seizures. My heart has been very, very heavy these past few weeks.
I'm really having some serious reservations about putting any more time into the diet, as what we are seeing daily is telling us.....it's not working. We've had discussions back and forth. Neuro, me, Matt, neuro again. We weren't able to see the out-of-state (Mass.) Dr. we had our hearts set on, and will have to wait to for our 2nd choice to squeeze us in the end of July.....which right now...seems like forever. I'm just not feeling 100% about terminating the diet until I feel like we've exhausted every possible option with it. I need a good, experienced set of eyes to look at our menus, mealtimes, every little thing we're doing....and see if there is anything different that would help us get better control.
There really isn't any other anti-epileptic medication that is on the table for us right now. All the choices we have left....aren't good ones. Somehow....something just has to give for Ava. The Clobazam seems to help a bit. Especially the first few hours after she takes it. I called neuro yesterday to see if we could add a small afternoon dose, and see where that takes us.
Madison and Christian have been soooo busy with sports, school plays, and end of the year stuff. It's been a lot of running around to baseball games, softball practice, school play rehearsals, performances...etc.
I wish the sun and heat didn't irritate Ava so much, as it makes it really difficult for us to have "fun in the sun" so to speak. We signed the kids up for a 1/2 day camp and 15 field trips over the summer. They are totally psyched to start (after the summer we had last year)! Most of their school friends will be there, and it will give me a few hours to get organized in the morning.
I've been swamped with appointments trying to get Ava ready to transition all her therapies from Early Intervention into the school system (on top of all our regular appointments)! Lots of "seizure" talk....which I've had up to my ears of these past few weeks! I'm soo worried about how she's going to do in school physically. Heat, loud noises, and sunlight are major triggers for her. We're still working out the details, but I can already tell...it's going to be a fight for us to get what she needs to be safe at school next year.
Well off to make some more Ketogenic meals!
Tuesday, May 13, 2008
Yesterday, we decided to restart anti-epileptic medication. It was a very tough decision, but we have to do what's best for not just Ava, but everyone in the family. We will be starting Clobazam next week, and hope it gives us some better control without affecting her learning and language as negatively as some of the other meds.
During our appointment yesterday with our Pedi. Neuro I really saw our situation in a very different light. As I was complaining about the recent seizure activity Neuro reminded me how terrible and unhappy Ava was on Depakote, and her months of no sleep on Keppra, when in the end, she was still having the same amount of seizures.
Quite frankly, I must agree with Neuro, this is the best Ava's felt physically in quite some time (despite the seizures). It really made me realize that the medications were: a) not providing decent control and b) making her feel worse than the seizures. So the fact that she's feeling good for the most part, and able to learn and remember things despite the seizures made for a really tough decision yesterday. I've been so obsessed with the seizures and my ultimate goal to be "seizure free", I never bothered to think about how she might feel. If she could tell us.....would she want to be on medication.......or deal with the seizures and feel "normal".
So in the end, all parties agreed. We must keep trying to work toward giving Ava the best quality of life possible. And right now....that means a low, low dose of meds to give us a shot at better seizure control, and us continuing with the diet.
Because it was so difficult to get and keep our feisty little two year old on the Ketogenic Diet, we all decided that taking her off the diet to test it's effectiveness would be ideal, but just not in the cards for us. I've worked so long and hard to actually get her to eat on a daily basis and not reject the foods, and because she had such wonderful success in the beginning, we're going to stick with it for awhile longer.
We also decided to head to Massachusetts for a consult at Mass General to help us fine tune the diet in any way we can to get better success with some more experienced dietitians.
Last night, after pondering everything that happened during the day, and after a comical phone conversation with a friend I was truly amazed by all the stages (and ages) we've been through with the epilepsy monster.
Tuesday, April 29, 2008
A poker face.
As much as I've been hemming and hawing about the diet, things are better. Not perfect....but better.
I'm much more comfortable with accepting Ava for who she is, and not trying to pretend things aren't exactly what they are. She is constantly examined by every mother, father, and town resident who knows she's had a seizure disorder. In all truthfulness, I think I'm really starting to be O.K. with it (except for the occasional ignorant comment). It's easy to forget what life was like without a special needs child, and instead of getting royally pissed off by the looking, the questions, and the totally weird comments sometimes, I've really been trying to picture "the old me" in the other persons shoes.
So now that Mom's not a ticking time bomb anymore*LOL* we're all really excited to start the summer. Madison's been working hard on a school play. She's working the tech crew, and absolutely loves it. Madison's not the "I want the spotlight" type, but is definitely the artsy, organized type. So this has suited her perfect. She starts softball in a few weeks herself. This will be her 3rd year, and she itching to get started.
As for Ava, well, she's shaping up to be a very busy little 2 yr. old. Even though we've been seeing quite a few breakthrough seizures, she's talking and learning at lightning speed (go figure). We changed the ratio on her diet (more fats, less prot. & carb), and it's seemed to make a slight difference, but we're still seeing too many breakthroughs. In the next 2 weeks we will be moving her up to a 4:1 ratio.
She's been sleeping beautifully the past 2 months and I'd really hate to start a med & have her go back to being massively irritated and sleepless. On the other hand, I'm ready to do what's best for her....whatever that means. So the next few weeks will be crucial for us.
Friday, April 18, 2008
Ava has had a roller coaster of good days and bad days over the past two weeks. It's so hard to correlate her bad days with any one thing, as she has been on a sneak-a-thon with food. She's been caught eating crumbs off the rug, and pretty much anything that looks like food. Needless to say, Matt feels it's the best thing that's happened so far as I'm vacuuming like crazy and the counters are always clean. The first thing she does when we go to anyone's house is comb the rug and corners from crumbs.
We decided to change the ratio of her diet from 3:1 to 3.5:1, in hopes we can see a bit more consistency, and better control. We're going to give this a few weeks and see where we're at. We are still completely off all seizure medication, and the goal is to stay that way. She is still doing so well with her speech and she is getting so much stronger. I really think that 2 week bout with the flu/pneumonia, then all the other illnesses that followed really knocked out her physical strength, as she's made so much progress over the past few weeks. She's back to running away, climbing up the swing set, and all her other fav. activities.
So we're still plugging along with the diet and praying we can stay away from meds.
We're looking forward to a seizure free summer!
Say it again.....................
SEIZURE FREE SUMMER!!!!!!!!!!!!!!!!!!!!!!
Saturday, April 12, 2008
Friday, April 4, 2008
When Ava was first admitted into the hospital to start her very first course of treatment with ACTH I read his first book....and.....it really encouraged me and helped us stay focused, and most importantly..positive.
I think one of the reasons I like Joel Osteen so much is that I love bold statements. I always have. I actually landed one my favorite jobs as a Purchasing Agent by bluffing (sorry Joel) on my resume because I just KNEW that job was perfect for me and I just couldn't live with the "what if"...I went for it.
I love dreaming big.....and EXPECTING nothing less than the best. So I'm sure you can imagine this has been a hard sell for the rest of the family, after all we've been through. That being said, even during the worst of times, I've always manged to roll out of the gutter and keep the faith (even if it took a few days....o.k.....weeks).
I still believe that our horrible chain of events in February happened for a reason. I would have never agreed to take Ava off of medication voluntarily. So when I found myself having a conversation with our neurologist about restarting meds, I really had to sit down a think about what my heart was telling me.
After a lot of soul searching (and reading some of my old blog posts), it didn't take me long to decide. There was NO WAY I was giving up this easily after all we've been through. Oh yes, and of course I had to ask myself WWJD (what would Joel Do)??? *LMBO* Thus....another bold statement.
"I don't care if we're syringing butter, making keto muffins until 2 am, or whatever it takes....we're going to see this through. If she can be seizure free on it once, she can do it again. So bring it on. It might not be today or tomorrow, but we will overcome this".
So, the past week Ava has been doing exceptional. A 95% reduction in seizures from where we were the previous weeks (we still see about 3 per day). Her energy is great, and her language has skyrocketed. In the past week she began speaking in full sentences......we are just shell shocked. She stopped rejecting food, and is completely healthy.
Right now we're all just enjoying the miracle of the moment.
Every moment we see her talk, laugh and play. Every moment we can breath easy and feel "normal" again. Most importantly, every moment we see with our physical eyes one of our bold statements becoming a reality......
Saturday, March 29, 2008
For the past few weeks, we've noticed the seizures slowly creeping back. For the past 4 or so days, they've been back to 30 per day. Her ketones are staying on the higher side, but not at the optimum level we would like to see. In order for us to reach a deeper ketosis, we would have to change the ratio (more fats..less carbs/protein).
Ava has had 4 major illness since the initiation of the Ketogenic Diet. She has had one major hospitalization, and a status seizure brought on by a fever...due to an illness. In our opinion, this diet has done a number on her immune system.
I put in a call to our dietitian last week, as Ava had been rejecting for a few days straight....and what food she was eating...I know, was not even close to being the ratio or calories it should. I'm not exactly sure what I wanted her to tell me. I already know all the stock answers to this problem......try new foods....don't make a big deal of it....start the bicitra again....make sure she gets plenty of fluids....check your mealtimes.....blah..blah..blah...we've been through weeks of rejection before.
What I needed was some MEGA reassurance, before I jumped ship. I explained how desperate I was for ways to help her eat....how upset we all are seeing this many seizures AGAIN....I'm pretty sure I sounded pretty desperate. The seizures are back, she's not eating, we still don't eat in front of her because she cries for our food, so we're ALL in this. Every single person in this house.
She assured me she would make a few calls to some fellow dietitians re: our case, and get back to me.
So long story short......had a major melt down while waiting for the "call back" and left a message for Ava's neuro Thursday morning crying and saying I was going to quit the diet the following day....I just couldn't do it anymore....I'm too discouraged...too tired....too heartbroken. Once again, the Epilepsy had gotten the best of me. I was down for the count.
Our pedi neurologist has been with us since day one. He met Ava when she was only 6 months old....and he's seen us through many, many, hard times, and difficult decisions. He knows my personality so well now, it actually scares me sometimes *LOL* I'm sure he had a pretty good idea of my state of mind, and knew exactly what to say. This is definitely not my first melt down over a failing treatment. We've had many.
So after an hour convo. w/ our neuro, talk of meds, talk of no meds, and lots, and lots of crying and listening to what my heart was telling me..........
I promised the doc we'd give it a full six months....GULP!
I feel good today. I've gotten all those negative feelings and doubts out of my system, and I'm ready to give this my 100%....again *LOL*.
Last but not least....my sister Bethany gave birth to a beautiful (4 wk early!!) baby girl on Wednesday.
Ileana Rose Caro. She is such a beautiful sweet spirited baby, and we all can't get our hands off of her (especially all the germ ridden cousins!)
Thursday, March 20, 2008
In fact, I even snuck in some much needed exercise time in, and the kids played at the YMCA for awhile. So I was trying to quietly sneak in the shower....and she caught me. The LaBonte shower/bath patrol.....banging on the door with her toys...."mommy..bath...me....".
When I opened the door and took one look at her hair and face I decided she must have looked in the mirror before asking to come in *LOL*. Anyway I was washing her hair and she was squirting water in my face and I noticed a jerk. Then her eyes deviated.....here we go again.... She was actually coherent and talking, so I was hoping it was a partial that would pass in a second or two.
In the matter of two minutes it turned into a full on tonic/clonic seizure. After 20mg's of Diazepam, we had to call the rescue. We're in status, so back to the hospital again.
Madison was circling Ava even though we asked her to go to her room, and she knows the drill. This time....she was very worried. So long story short...seizure broke right before we got to the hospital, 20 minutes total. O2 was great the whole time, no real fever (100.2); we were in and out in 2 hours and home by 11pm. , a good night for the Hasbro ER which was completely packed. I've come to the conclusion that there ARE some benefits to knowing everyone there!
No sooner we walked in the door, Madison threw up in her bed. Now mind you, this is not the first time this has happened. Madison has thrown up a few times on nights when Ava has seizures, and we actually have a pretty decent stock of Pepto for Madison! It's a pretty simple protocol, Ava has seizure, Madison needs Pepto.
So I let Madison take the day off from school today & spend it with me & Ava, and do some pukey laundry, but when I went to turn on the washer this morning....it was broken.
Am I still sleeping...or is this for real?????
So as soon as Ava woke up this morning I gave her the once over....hmmm...she looked a bit red, so I took her temp.....103.7. I was actually relieved, as sick as that sounds. There was a reason for the seizure, she's sick.....AGAIN. I did have them give her Tylenol in the ER, as anything over 100 deg. mixed with a seizure is preventative Tylenol time in our book. I also gave her some Motrin in the early a.m. just in case.
Now it's time to get out of my ratty robe, go pick up my scripts for Ava, wait for the repair man, make some keto meals and get on with the day.
We survived another status.
Sunday, March 16, 2008
Even though this past week we've had a few set backs, Ava really is talking better than ever. Both her receptive and expressive language have really improved since we started the diet. We're beginning to actually understand many more of her words, and her mood in general has really been great. Since returning from the hospital a few weeks ago, she has really turned into such a playful, spunky little girl.
We have been having so much fun with her lately, and it really feels good to see her doing more laughing than crying.
Wednesday, March 12, 2008
Ava recovered nicely from our "attack of the rotovirus". Last Tuesday, March 4th was our first "normal day", and things have been somewhat uneventful on the immune system front.
Ava had a stretch of about a week of seizure free days after we were home from the hospital, and slowly....we're seeing them creep back. One here, one there, then two here, three there and so on. They are, however, pretty subtle compared to the ones we were battling before the diet.
So when I see seizures.....I'm just downright MAD. I'm mad that my whole day is focused on doing everything I can to stop the seizures....and their STILL there. I'm also, just so very tired.
This diet pretty much consumes my entire day. Ava eats 6 times per day (three meals and three snacks). Between preparing and weighing all six meals, making sure she eats on time, feeding her most of them (as to not loose any melted better), and writing down all her fluid consumption.....I'm pretty much spent at the end of the day, with nothing left for anyone or anything else.
As crazy as it sounds, sometimes I feel like this whole epilepsy ordeal is just like one of those never ending baseball games or one of those bad reality TV shows that you really don't want to watch, never admit to your friends your hooked on, but just MUST find out what happens every week.
I tell everyone she's doing wonderful, and, of course, the few seizures per day she will have, will be at the worst possible time.....for everyone to see. I'm really considering if they could rename Murphy's Law, to LaBonte's Law!
I found myself actually being frustrated with Ava this week for being so persistent with demanding drinks. The excess fluid is causing the drop in Ketosis which equals seizures. Why can't she just listen! Doesn't she realize she's doing this to herself!
I was actually laughing at myself this morning reflecting on our week. Ava is two years old! Yes, she does have many obstacles, but in many ways she's just a regular two year old....testing me...and trying to flex her muscles. So this is the part where I tell her no more drinks and that's that...she cries for awhile, but we get through it (and it took me all week to figure this out!!!)
I expect so much out of my little girl. She wakes up every morning having to deal with this condition, and still laughs, plays, and tries like hell to just be "one of the guys". I guess she just doesn't realize that on top of having to eat six super disgusting meals per day, completely apply herself during speech and physical therapy, go to bed on time, that she must NOT as for too many drinks!
So here's to you Ava......
from today on.......
we don't expect you to do it all. If you have a few seizures, you have a few seizures.. We are all in this together. We're going to keep you extra busy this week so you won't be drinking out of boredom, and hope we have a better week.
We know your doing the best you can, and we're going to make this work. We're sorry for putting too much pressure on you. You try so hard, and, Ava, we are so proud of you EVERY day.
Here's to a great week..................
Monday, March 3, 2008
Ava still has the rotovirus, and we are currently on day 9 of random attacks of "the grip", although today did seem better. We only changed her 4 times last night, and Matt & I were commenting this morning on what a good night it was! (That's when you know things are bad, when your grateful your kid only had diarrhea 4 times in a night!)
Ava had been weaned off all medication except for her nighttime dose of Ativan. Our wean should have been completed 3 days prior to Friday, but quite frankly, I was feeling pretty hesitant to remove it, as she has been so sick and had spiked a fever earlier last week. In our house, fever=seizure=hospital.
So in the interest of full disclosure, I was just too exhausted to even deal with even one single seizure of significance, and things have been going so smoothly seizure wise. Why ruin a good thing?
So Friday night, Matt and I were watching TV in bed with Ava, and Matt nicely reminded me I forgot to give Ava her nighttime Ativan. I had a long day, and was feeling pretty settled in. My response was "Well, looks like tonight is the night....no more meds." We both couldn't stop laughing....guess you just had to be there.
Things are going extremely well with Ava, considering she's had a stomach bug for almost 2 weeks. She has not missed any of her Ketogenic meals, and since our return from the hospital, we've only seen less than 5 myoclonic seizures, and a few absences. Prior to us starting the Ketogenic Diet, Ava was having between 15 -40 drop seizures per day. Random partials and complex partials, and countless absence seizures.
The diet has been a God Send...in every sense of the word.
Ava started physical therapy last week, as now that's she's not falling every 5 minutes, we really would like to see her build up some good muscle strength and start jumping and running again. She's slightly behind her peers, but I really feel once she's on the mend from this bug, things will really take off.
Thursday, February 28, 2008
Diarrhea. Seven+ times a day, and all through the night. We are now on day 4 with the end nowhere in sight. She's up about 2-3 times per night with cramps and diarrhea, and we've been homeward bound for the past week, as I'm not sure the public can handle it! I took her to the pediatrician today for the once over, and she seems to be staying pretty well hydrated considering.
On Tuesday afternoon I noticed two seizures, the first I've seen in over a week. I immediately took her temperature, and as I suspected, she was febrile (101.5). She hasn't spiked a fever since that day, and I haven't seen any further seizures of note. We have seen a few absence seizures, but have not seen any drop seizures since our return from the hospital.
Yesterday was Christian's 8th birthday. We had his favorite dinner last night, roast beef, carrots, gravy and twice baked potatoes (he wanted to make it EASY for me!!) We're having a little family party for him tomorrow at his cousins house, and he's super excited to get his new bike and all the "good" presents.
Boy, the time really flies. When he went to bed last night, I was telling him about the day he was born, and it really did seem like just yesterday. When I look at how grown up he looks now, and how mature he is getting, it really takes my breath away. I guess there's just something about mother's and son's.....he'll always be my little boy no matter how old he is!
It really does weigh on my heart not being able to spend the quality time with Madison and Christian this past year. Just when we all thought things were settling down.....it all started up again. Such is our life!
All things considered, after ho humming a bit and a few complaints from all of us, we sucked it up, and took it in stride. We've actually had lots of laughs this week, and even though we can't change our circumstances, we can, however, change how we react to them.Well, it's time to go wash that 3 loads of pretty stinky laundry waiting downstairs (Ava had a busy day....you've got to love that rotovirus!).
Friday, February 22, 2008
Ava's been eating all her meals, and recovering nicely. We've seen no seizures since we came home. So five days seizure free.
I've been trying to sum up this experience we've had, and the only thing that comes to mind is a quote from my one of my favorite novels:
"It was the best of times, it was the worst of times".
Right now, this is just so surreal to us. Before our admission to the hospital, we were fighting to get every meal down, and she was rejecting most of them. We were on a hefty dose of Keppra, and fighting to get that down as well. She was still having seizures, and we were stressed to the max. We wanted to give up. It just seemed too hard. Our daughter was miserable, and so were we, but we kept at it.
For the past 5 days, things have been good. Really good. In less than a week we will be off all anti epileptic medication, a place I never thought we would be.
In the past, I was always too scared to even tell anyone we were seizure free. It always seemed like right as the words came out of my mouth, everything would come tumbling down.
Looking at it in retrospect, it was a test. A test I failed, every time. It took almost loosing her for me to realize that I have to live, walk, eat, and breath......faith.
The one thing...I was sure I had down pat. Since the first moment I heard the words out of the Dr's mouth, deep in my heart, I've always believed that some day.....maybe today, tomorrow, or years from now.....we will overcome this obstacle.
I believed, but never stood up and claimed it, for any of us. I just let my circumstance get the best of me. Fear ruled my life. Fear of the future, mainly. Will my daughter ever be "normal"? Will she ever get married? Will she ever be able to live on her own? And most importantly....
Will she ever really, truly, be happy?
So through this experience, I've come to understand that all of those questions have already been answered. I believe that we were all born to serve a purpose, and as long as we do our part as parents, Ava will walk into hers...whatever it may be. I don't know why she's had to suffer so much in so little time on this earth, but already, she has really touched so many people.
After everything, I feel really, truly grounded, for the first time since this all began. So if we do have a set back, I know we can handle it....the right way.
I learned the hard way (still waiting to meet a person who learns the easy way *LOL*)how to stay at peace during a storm. During the first week of the admission, I was a total basket case of emotions.
Once I got sent home with the flu....I really took that time to seriously reflect on the circumstances, and really have the courage to be true to myself.
I've learned so much through this illness; stuff that might have otherwise taken months or years of little things. The pain sucked.....but we're all better because of it (even Ava)
Until recently, I never truly understood the quote by Freud:
"One day, in retrospect, the years of struggle will strike you as the most beautiful"
Saturday, February 16, 2008
Ava stood up independently today, and was quite talkative when her brother and sister showed up for a visit.
When I think of where we were at this time last week......and where we are today.......I'm just completely amazed. There are truly so many families suffering there in the PICU. The sounds of mothers crying all though the night, and buzzers constantly going off. It's just not a place I want to be again any time soon.
I am truly humbled, in every sense of the word. In all honesty, my heart was breaking for all of the other families that were "new" to the hospital, and really having a rough go of things. After all, it's an old shoe for us. Although, by far, this has been the most difficult hospital stay we've ever had.
We could have lost our baby..........but we didn't.
I completely attribute her speedy recovery to each and every person who prayed for Ava during this time, and to my mother, who instilled a firm foundation of faith into my heart (and of course to the wonderful PICU doctors and nurses at Hasbro Children's Hospital).
We're hoping Ava will be home tomorrow, after almost a full 14 days in the hospital (13 in the ICU).
So we're just sitting tight, and waiting to exhale. We can't wait for you to be be home, Ava.
Thursday, February 14, 2008
I spent this afternoon with Madison having a special lunch at her school. We spent last night painting her nails and picking out the perfect Valentines outfit (even though she changed in the morning)! I walked in the door with flowers and her favorite lunch.
When she saw me....her face lit up. I actually though SHE might cry. Although none of the other parents brought anything other than lunch, I wanted her to know how special she is to us, and we wanted her to feel important. So, mission accomplished. She took the flowers back to her class (although I did explain that they would probably die without being in water) she didn't care. I hope she looks at them all day at school and knows how much we love her, and what an important part of our family she is.
Now back to hospital news. Tuesday night was a long night of Ava waking up and literally choking on her tube (they lowered all her sedation to give her the best chance of breathing independently in the morning). Wednesday morning was when we had planned to remove the breathing tube for the second time. It was one of the worst feelings of this whole experience to see tears coming down her face, and not being able to fix it, especially when she was seeing my face (probably wondering what the hell I was doing just standing there!!!!)
So Wednesday morning came, and I had spent the night preparing myself, and trying to stay at peace.
I swear it was almost like the moment that she took her very first breath, and we were all anxiously waiting for her to cry....so we would know everything was o.k. Well she didn't exactly cry this time, her throat was much to sore, but she began breathing again like a champ. This was one of those moments that will be etched in my mind for the rest of my life. To see my daughter take those first few breaths, there really are just no words. Even the doctors, nurses and respiratory therapists were cheering her on. It was one of those moments.
She is still very, very weak. She has her NG (nasal gastric) tube in to keep her fed, as she is much to weak to begin her regular diet. Actually, this is the easiest we've had it on the Ketogenic Diet so far!!!! I came home yesterday after two longs days and nights, to start preparing some of her meals for when she is ready.
She hasn't been talking much, and I started to panic...that maybe we've lost all the wonderful language progress she had made in the past weeks. She was putting three words together, and really taking off with her language.
But once again, I had to make a choice about how I'm going to handle this. Fear, panic, and sadness, my usual reactions just aren't an option. I don't want her to even FEEL a vibe of disappointment or pressure, I just want her to feel safe, loved, and completely at peace.
If she needs time......we've got time!
The doc's feel she's experiencing some mild withdrawals from all the heavy meds she'd been on for the past week to keep her sedated. Her neurologist took her off her only seizure medication (Keppra) due to her extremely serious condition last week, as she was covered seizure wise by all the other meds they were giving her for sedation.
So right now the only medication she is on is Ativan 3x per day. Based on how her recovery goes, we may not restart the Keppra, as the neuro feels it was not helping her with the seizures (the drops) that we were controlling so nicely with the diet.
It will really just be one day at a time, if she needs it back...we'll give it....if not....praise God!
Tuesday, February 12, 2008
Yesterday morning they attempted to extubate Ava (remove her breathing tube) and her esophagus became irritated and enlarged, so it just wasn't going to work. Her left lung collapsed, and she was re-intubated. This was extremely hard for Matt to see.
The attending later told me that when she saw Matt sobbing over Ava after it was over, that it absolutely broke her heart (and she definitely didn't seem like a tender hearted woman *LOL*)
Matt had been stuck in the hospital for four days straight, so I came right away (my 5 days of being contagious were finally up!!)
Soooo....I'm sitting here in awe of so many things.....
The Power of God
My precious baby girl. Her strength and endurance never cease to amaze me. I've never been more proud of her.
My husband ....for staying strong during the worst of this storm (and trying to lie to me about her condition *LOL*, when he knew I was calling the doctors at all hours.
Millie Bonilla for flying in from Florida to pray for and lift up our daughter.
The outpouring of prayer, love and generosity by so many people that I can never repay.
Our wonderful neurologist, for being more than a doctor, but a friend and a confidant. We love you Dr. G.
My family and friends for taking my frantic phone calls and for praying and crying with me.
We still have a lot of recovery ahead, and the next few days are going to be hard for Ava, so please continue to keep her in your prayers.
Thank you everyone. No words can express all the gratitude we feel toward each and every person who has been there for us, in person, in prayer, and in thought.
Sunday, February 10, 2008
She stopped breathing several times in the trauma room. She was moved to the PICU where they told us she tested positive for Influenza. On Wednesday she developed pneumonia, and Thursday night she was intubated, and began showing signs of sepsis. Matt and I had been there together at first, and he had went home to be with Madison and Christian and get some rest while all this went down.
Thursday morning, after a record 5 nights of no sleep, I went home and began feeling extremely ill myself, and after a quick visit to the Dr., tested positive for Influenza.
So......I'm here at home, praying for my baby and trying to get well.
Today, she is breathing over her vent, has had no further seizures (other than the one we were admitted for), and the sepsis seems to be clearing up, by the grace of God.
There is so much more to the story, and a million things that have happened, but I'm still really exhausted. Here is the letter I gave Matt to read to Ava from her mommy:
February 9th, 2008
From the first moment I laid eyes on you, I knew you would be such a blessing to our family.
I love you more than I can say with words, and my heart is breaking for you, my precious baby.
Christian misses you so much, and wants you home so badly. Madison loves you more than she shows. This is so very hard for her to see you hurting, Ava.
Ava, God has put his blessing upon you, and we know, that with him, all things are possible. Our faith goes beyond what we are seeing on the outside.
Ava, I am sooo proud to be your mother. You always have stood up to your obstacles and are always so brave in the most difficult situations.
Ava, I have begged to take your pain and suffering from you. I would give my life for you to stop suffering, but that's not what God has in our plans, and we have to trust that his plans for us are of good.
Ava, we will speak to your mountains and take this illness and cast it to the sea. We are speaking only life and health over you. God's ways are higher and better that our ways, and we commit you whole heartily to him. We know Jesus has already overcome this illness for you.
I refuse to be scared any more. After all, God has not given us a spirit of fear, but of power, love and sound mind.
From the first moment you were diagnosed with Epilepsy, I knew in my heart you would overcome.
Ava, I believe.
Ava, you are my sunshine on the darkest day. Our family just doesn't work without you here, so please get well soon.
At 8 months old, Ava was diagnosed with Infantile Spasms, a rare form of epilepsy. She was treated immediately with a 4 week course of ACTH. Ava spent 6 weeks "seizure free". All of Ava's MRI's, CT's, and blood tests have been "normal".
On November 20, 2006, Ava had a grand mal seizure which could not be stopped, and she was put in a drug induced coma. We left the hospital on antiepileptic medication, and have been on medication ever since. Ava is currently diagnosed with Generalized Epilepsy.
So far we've tried the following medications: ACTH, Trileptal, Keppra, B-6, Depakote, Carnitor, and currently on the Ketogenic Diet.