Saturday, August 30, 2008

Home, Sweet East Wenatchee

We actually made it home Thursday night but I've been too busy and worn out to post a blog saying so.... until now.

Midget was discharged Thursday afternoon. We made it home by 7 that night (still can't believe it took me nearly 4 hours to get home). I had just enough time to give him a bath and put him to bed. Then I took a bath and passed out myself (in my bed of course).

We had to go run a bunch of errands yesterday including getting stuff to make Midget's formula. That was interesting. I was standing in the store very near tears because I couldn't find what I needed. After nearly having a break down, I found the stuff. I honestly didn't think this diet was going to cause a nervous breakdown but maybe I should have. *chuckle*

Midget's been doing really well so far. It's Keto Day 5 and he's only had a few seizures. In fact, I don't think I saw even 1 yesterday (although we were in the car most of the day so I could have just missed any). His ketones were 3+ yesterday morning but I wasn't able to get a reading last night. He's in great spirits but his off and on napping is screwing up his sleeping schedule. I drug my butt to the couch about 3:30 this morning when he decided it was a great time to yell. *sigh* I think he went back to sleep at some point but I can't be sure.

Time to get Midget out of bed so I can work on feeding my addiction. (I had serious WoW withdrawals all week!)

Thursday, August 28, 2008

Keto Day 3

And it starts off as Tony the Tiger would say.... GGGGGRRRRRRRRRREEEEEEAAAAAAATTTTTTTTTT! (Ok so I probably drug that out a lot longer or something but you get the gist.) *giggle*

Awoke this morning to Midget getting a blood draw. I wasn't awake enough to ask what they were testing but the nurse took a small bit of the blood to check his sugar levels.

They are down.... dropped 20 points and are in the upper 80's! WOOT!

We checked his ketones too and he is at 2+! WOOT!

This means he's finally getting into ketosis. FINALLY! WOOT!

I guess the increase in his ratio yesterday helped. (Oh and I was wrong yesterday. They increased his ratio from 1.5:1 to 2.5:1 not 2:1. My bad!) I'm excited that things are working out so far. YAY!

He might get released today since he's finally showing a good change but I don't know yet. They might keep him until tomorrow just to make sure he's in good ketosis. That's up to the dietitian though.

So far he's not had many seizures.... although I'm thinking that we just aren't seeing them as much because he's been pretty sleepy. I noticed at least 1 last night but it wasn't anything major. A decrease in his seizures would be ideal but the main reason I wanted to do this diet was to get him off the Phenobarbital.

Midget's epilepsy is complicated. Even today, there isn't a lot of research and knowledge about why seizures happen. In a child who has a reason for seizures--like Midget and his head trauma at a young age--at least there is a reason but it's still unclear as to how seizures work...... at least that was my understanding when I was reading The Ketogenic Diet by John Freeman.

I decided to go into this diet cautiously optimistic that he will be one of the ones who is completely relieved of his seizures. But I know there is a very high likelihood that he will not be one of those kids. Since his seizures are mostly from the scar tissue that has formed inside his brain from the damage, I know that it's likely we will never be completely rid of the medications or the seizures. It saddens me to think that but I'm trying to be a realist here.

The book says that when a child is starting the Keto diet (at John Hopkins), the medical team has the parents write out their expectations for the diet. I voiced these goals to the dietitians yesterday but I think it's good to have them written down too. (I'm sure I'll add a page to his Keto notebook when I get home but, for now, I'll put them here.)

Success of the diet, for us, would be that Midget can come completely off the Phenobarbital and have reduced amounts of Keppra and Zonegran (if they are still needed).

The side effects of the medications are, in my opinion, taking away my child. Some of the side effects of the Pheno include agitation, constipation, insomnia, apnea, and even anemia in chronic use. Keppra and Zonegran are listed with the same side effects. So Midget is getting it 3 times as hard!? *sigh*

Early on the doctors said they like to wean kids off of the Pheno by 18 months because of the side effects usually seen in children like agitation. Yet here we are, 3 years later, and Midget is still on this drug! We have tried to wean him a couple of times but as soon as his levels would drop the seizures were back stronger and more frequent. It's not easy to watch your child go from a deep belly laugh to looking like someone scared the crap out of him!

The book says that most kids who don't have seizure control with 2 medications have less than a 20% chance to have success on any others. Midget is on 3 and is still having seizures. I definitely think this diet was our next step.

Midget has 6-8 seizures a day. I know that doesn't sound like much but that's just the ones I know he's having. An EEG in 2007 told us that he has seizures when he's sleeping and also when he's not showing physical signs of having seizures when awake. So in reality, the number he has per day could be much higher and we don't even know it.

Having a decrease in the number of seizures he has would be a great benchmark goal. If we could get all of his clonic seizures to go completely away, I can live with the absence seizures. (Half the time, I don't even realize he's having an absence seizure until I can't get a reaction out of him.)

For now, I think those are my 2 main goals for this diet. I'm optimistic all ready that we can achieve these goals. (I have to be optimistic or what's the point in doing it, right?)

Wednesday, August 27, 2008

Morning of Keto Day 2

Midget is not in ketosis yet. His blood sugar is still pretty high. (It's currently in the low 100's and they want him down in the 60's.) That means he's still burning sugar instead of fat which is why he's not in ketosis yet. I don't know if this will mean that they will keep him until he is in ketosis or not. I'll ask the dietitian when I see her next.

He did tolerate the formula really well so they increased the ratio of the diet. He was on a 1.5:1 diet yesterday and is now on a 2:1 ratio. The ratio is fat to carbohydrate and protein grams combined. It's hard for me to explain but I get the basic gist of it. The Ketogenic Diet by John Freeman is a great book to explain the diet. (Clicking the link will take you to a web version of the book that you can read, if you want.)

My lunch is getting cold so I'd better go eat. *waves*

Keto Day 1

Midget was admitted yesterday for his diet. It was kind of tough on me because they had trouble getting his formula up to him in a timely manner so I had to listen to him smack and lick his lips for a few hours. But he did really well so I'm ok now. *grin*

Things are going good so far. I only noticed one very mild seizure yesterday and Mom, likewise, thought she only saw one. Granted Midget was in and out of sleep all day thanks to his medications. (He had them on an empty stomach yesterday morning and they ALL cause drowsiness.) When he wasn't sleeping, he was laughing like crazy. I figure it was just because he was tired although maybe the diet is all ready working to relieve the grumpiness. *snort*

His blood sugar stayed good all night so that's a good sign that the diet it working. We will check his ketones this morning when we change his diaper (unless the nurse did it while we were at breakfast). They drew some blood this morning to check all his medication levels. Hopefully we can start decreasing the Phenobarbital before he leaves the hospital but I'm not sure they will.

The dietitian said we will keep him on the formula for now but will progress him back to baby foods soon. I figure his 1 month recheck at the end of September will be when we start the transition back.

This post would have been more exciting and funny had I gotten to a computer late last night. But I didn't even remember the 24 hour lab was here so I just stayed in bed and tried to sleep. *chuckle* Anyways.... I need to get back to his room and give him a bath.... after that I plan to stick my nose back in my book, A Deadly Game by Catherine Crier. (Don't ask why I wanted to read it but it's really good so far!) *grin*

I'll try to post again later today if I can and have anything interesting to say. Have a great day!

Sunday, August 24, 2008

Tomorrow, tomorrow... I hate you... tomorrow....

We leave tomorrow for a week.

Midget starts his diet on Tuesday but we're supposed to see the dietitian in clinic tomorrow (although she's never confirmed anything). I'm scrambling to pack us up since I waited until the last minute to do any of it. *snort*

I'm looking forward to the start of this diet and am viewing it as a means to an end of Midget's seizures (I'm cautiously optimistic remember?). However, I'm not looking forward to living in a hospital for a week. ICK! Hopefully this will be one of the last hospital stays for a very, very, very long time! (A mother can dream, right!?)

Not much else to report right now. I'll try to update as often as possible while we're gone but I don't know how often that will be. I doubt I'll be taking my laptop so I'll have to try and use a computer at the hospital and sometimes it's hit or miss if I can even get the net to work there.

I'm a photographer.

Or at least I like to pretend I'm one. Lately though, my photography has taken a serious back door to my life.... mostly because I'm just not confident in my work any more.

But I'm stoked that I get to shoot my favorite models in about a month! WOOT!!

Tracey called me tonight to set up a shoot of her and the girlies. YAY! I have soooooo much fun doing their photos and can't wait to get some great shots of my lovely ladies! *beams with pride*

Stay tuned for a peek at what I get from the shoot. (Like I couldn't not post them here for the world to see! Those fine ladies are just too gorgeous and sweet to keep hidden in my hard drive!)

Wednesday, August 13, 2008

13 days and counting....

Midget starts a new diet in 13 days. You're probably wondering why a 4 1/2 year old would need to be on a diet? Well... it's because he has epilepsy.

Brief background story for those who don't know.

I gave birth to a perfect little 8 1/2 pound baby boy in February 2004. On March 3, 2004, at only 3 weeks old, my perfect little boy was nearly killed. (I know some who are reading this are probably saying, "That's an exaggeration!" but when the doctors tell you there's little hope your baby will live to make it out of the ICU, then it's not an exaggeration.)

My ex-husband... Midget's sperm donor (as I can NOT refer to that thing as a father!).... shook him and threw him on the couch to make him stop crying. (I only know this because the cops told me he confessed to it and made a reenactment tape for them after he was arrested.) The abuse led to grand mal seizures and a stroke. The damage was severe and is, of course, irreversible. Midget now has many severe disabilities including epilepsy. (I'll spare you the long list of diagnosis' because it is looooong and I tend to forget some of the more minor ones.)

Since he was 3 weeks old, Midget has been on Phenobarbital. In young children, the main side effect is drowsiness. Believe me, we saw enough of that in the first year or so (especially after we'd have to increase the dose because he was having seizures). When he was about 2 1/2 we had to add in another anti-epileptic medication called Keppra as Midget was still having a bunch of seizures.

End of last year, on a visit to his Neurologist, she mentioned something about a diet called the Ketogenic diet. I immediately came home and read up on it to familiarize myself with it. I had to decide if I wanted to try it or not. At the same visit, she prescribed another anti-epileptic medication (Zonigran) to help combat the seizures he was still having. (If you're keeping track, that's now THREE medications just for his epilepsy.) Even on all these medications, Midget still has multiple seizures a day.

We've tried to wean Midget off the Phenobarbital several times but as soon as his levels started dropping, his seizures started increasing in amount and severity. I want him off the Phenobarbital because of the side effects. In older children, it can make them agitated and cranky. While my son is usually a ray of sunshine, when he is grumpy, it makes the whole house (which is basically just me) grumpy!

After reading about the diet, I thought it was worth a shot.

The diet has a pretty decent success rate... at least I think so. Of the kids that go on it, 30% end up completely off medications and once they come off the diet, they never have a seizure again and can lead a normal life. Another 30% see a reduction in medications and can maintain that reduction off the diet. Then the other 30% have no changes at all.

I know Midget's seizures are complicated and come mostly from the scar tissue that has taken over the part of his brain that was damaged by the abuse (by the way, he has 50% brain damage). I know there is a high likelihood that he will not succeed on this diet because of the scar tissue. But I'm willing to try it to give him some chance at coming off the Phenobarbital forever and having just 1 seizure-free day! Is that too much to ask for my boy who has been through WAY more than any child should ever have to go through?? I don't think so!

The diet will be difficult but at start, it will be fairly easy (I hope). Instead of having to weight out and puree up all his food, he will start on a special formula. My hope is that we can work him to eating by mouth again. (He receives no food or liquids by mouth because he can't swallow correctly. He is solely dependent on the feeding tube he's had since he was 16 months old.) When that time comes, then we will switch him over to pureed foods again. I don't know how long that will be but it's a goal we have.

Who knows!? We may even start seeing some developmental improvements while he's on the diet. If he's not having seizures all the time, then maybe he can finally learn to push up and roll over, maybe even bare weight on his legs again..... things his 8 month old cousin (who can also crawl) are already doing. Definitely something to look forward to!

Saturday, August 9, 2008

Best Friends

Isn't it weird how your mind can start running once you wake up.... and then even when you're not fully awake? Mine has been going 1000 miles a minute since 5 AM when my gorgeous 4 year old decided he wanted to be awake. The topic on my mind is my friends.

I'm privileged to say that I have a lot of really amazing friends. I also enjoy saying that I have many best friends who I know will love me and be there for me even when I go completely crazy. *chuckle*

Tracey, Trista, JenLouise, Kim, Lori, AshE, Jeff.

They are probably the greatest friends I have after Mr Indy and Midget (AKA my son). (However, that is NOT discounting all the other truly amazing friends I have!) Some I've known my whole life (or at least the better part of it) and some I've met online. But no matter where we met or how long we've known each other, I know they've got my back and I've got theirs!

That's why I'm writing this blog. I realized just how lousy of a friend I've truly been lately. I didn't call or email on one's birthday. I didn't get to attend one's wedding. No visit with another on her vacation to my state. Don't even get me started on what is going on in their lives that I don't know about because apparently it's quite a bit. *frown*

I totally suck as a friend!

I feel so guilty not knowing what is going on in their lives yet I've been so wrapped up in mine.... getting Midget ready for his new diet, prepping myself to go back to college in September, family issues, etc..... that I haven't taken the time to find out. So when I read something on MySpace about Tracey last night..... I felt like the worst best friend EVER!

This is Tracey. (Isn't she gorgeous?!?)



Tracey and I met on MySpace in 2006 through a mutual acquaintance we had. We hit it off and have been like sisters ever since. Around that same time, Tracey found a lump in her breast. Luckily, it was benign but since then another one has appeared. I didn't know about this new lump nor that Tracey has been trying to find a way to pay for the care she needs! See, Tracey can't afford health insurance because she's a single mom of 2 gorgeous girls (not including me of course *wink*). We all want her around for many, many years to come! That's why she set up a website to tell her story and find generous people that can help her out however they can.


I'll let her site tell you the rest of the story but I'm hoping whoever is out there reading this, might find it in your heart to give whatever you can so she can take care of herself. Not just for her but for her girls! I mean... look at these girls!?! They are definitely going to need their mom around for a long time!

Miss K




Miss J




Thank you from the bottom of my heart for reading this! I will keep you (whoever you are) updated on Tracey's progress.

Friday, August 8, 2008

Miss Indy's WoW Dictionary

Note: I may add to or revise this as needed.


MMORPG: Massive Multiplayer Online Role Playing Game

main character: the first and usually highest level character of a player... once a player has more than one level 70, it usually refers to the one played the most often

alt: other character(s) played by a single player

lvl: abbreviation for level

ganking: killing a member of the opposite team for honor

camping: closely watching the dead member of the opposite team that you just killed so you can kill them again when they resurrect

rez: abbreviation for resurrect(ion)

Alliance: the good guys... just kidding... one of the teams you can play (Yes, all my characters are Alliance.)

Horde: the bad guys.... AKA the other team

ding: the action of reaching the next level

AoE: Area of Effect... spells that are cast over an area instead of on just one target

PvP: Player vs Player

PvE: Player vs Environment

bgs: abbreviation for battlegrounds

battlegrounds: areas where many players group up to take on groups from the other team...... a form of PvP

WoW... that's addictive!

Never in my jumbled mind did I figure I would start a blog by posting about WoW but ... well I guess hell froze over!

Before I go any farther..... I want to say that I realize a lot of this blog is not going to make sense to some since I will be using a bit of gaming slang and abbreviations but I will come back and post a "dictionary" of all this geek terminology that has intruded my skull. Promise!

What does WoW stand for? If anyone is actually reading this, you are probably sitting there trying to figure out what it means. Unless you play the game or know me and have heard me talk about it too much, you possibly don't know. WoW stands for World of Warcraft. Yes people. I am an MMORPG junkie! My newest addiction is all in thanks to my gorgeous boyfriend Andur (in later posts he will be referred to as Mr Indy but when I talk about WoW, he will be Andur... hope you're confused now *wink*) and his best friend Hummerz.

Earlier this year, Andur got back into playing WoW after he bought himself an Alienware laptop. I did not understand the interest in the game because I did not understand the game. After conversations with Andur and Hummerz, I realized there might be more to the game than I thought but was still not interested in playing.

Hummerz put up a "challenge" to me saying that I would definitely be playing WoW by the end of summer. I told him it was unlikely as I had better things to do with my time. (Now I can easily *snort* at that reply.) So to try and prove Andur and Hummerz wrong, I asked Andur to help me make a character. I started slowly but it soon engrossed me. I now have a level 63 Gnome Mage named Lluvy. *hangs head in shame* I hate being wrong!

I can freely admit now that I am addicted. My avatar on The Baby Kottage says it all:



Likewise, the list of characters I have created also proves my addiction. (All levels are as of today... 8/8/08!)

Lluvy - lvl 63 Gnome Mage (my main character)
Ceinwen - lvl 26 Human Warlock
Atiya - lvl 13 Night Elf Druid
Dwitless - lvl 16 Dwarf Hunter (only male character)
Tegwen - lvl 23 Draenei Warrior
Eudora - lvl 6 Gnome Rogue
Shanae - lvl 6 Draenei Shaman
Naomh - lvl 5 Night Elf Priest
Idony - lvl 5 Human Paladin

Yes I have a character of each race and each class. (The last 4 are new so that I could say I have a character of each class. *blushes* I just want to see what each class can do... honestly!)

However, that wasn't the original intent of this post. I originally intended to post this long, wordy rant about ganking, camping, and the overall annoyance of both. But I can see just how pathetic it would be after admitting my obsession, so for now, I will leave you in peace. (Or as the Horde would probably love to do, leave you in pieces.... sorry had to get a little bit of ranting in there! *giggle*)