Monday, December 31, 2007

Happy New Year!

We don't have much planned today. I wanted to run and get a couple ingredients for some appetizers I was going to make tonight but it's so cold I hate to drag the kids out. So we'll see. We're not doing much. We're having some friends over and eating food but that's about it. I got some New Year party hats for the girls which they love. I'll take some pictures later! :)

The kids are all seemingly healthy for now. They still have the cough but it's not bad at all. Emeric has been really good today, much less crabby, so I'm assuming he's feeling better too. Plus he's been a little ham all day! He has this goofy laugh that is so funny! I should get a video of it sometime.

Have a great day!

Sunday, December 30, 2007

Some Christmas pictures!

Ready for church

Christmas Pajamas!
Emeric's new truck

Friday, December 28, 2007

Home from the hospital

You can read Emeric's caringbridge site if you want to know why we were in the hospital! :)

Kaydence and Emeric are both still sick but Emeric seems to be doing better. Kaydence has been lying around for the last few days. Hopefully she's over it soon.

I haven't slept since Tuesday night so I'm tired and hopefully the kids will sleep tonight! I'm off to put a movie in!

Tuesday, December 25, 2007

Merry Christmas!

The kids slept in today which was nice but once they were up they were ready to open their gifts right away! Kylie got a V-tech game system that plugs into the computer and she has been playing it ever since. She also got a game and a plate and bowl set. Kaydence got a doll, a plate and bowl set, a game and some Dora and Diego sheets. Emeric got a wagon, a tonka truck and an Ugly Doll. I got Jake a new drill and some new clothes.

Emeric has been sick since Sunday so he didn't enjoy anything much and he's been so tired he went back to bed within the hour. Since Saturday he's been having a lot of seizures. It stinks that we couldn't catch them when he had the VEEG so we'd know exactly what was going on. Saturday-Monday he had at least 20+ within a few hours. I can't wait to start the supplements with him and see if they help. I sure hope so because he's not been himself at all for a while.

We're going to Jake's parents house today for Christmas so I need to go pick up a lot of wrapping paper first! Have a Merry Christmas!

Saturday, December 22, 2007

Early Christmas present

I said the last post was my last post for the day but then I got my Christmas present early so I had to show pictures.

Jake made me this entertainment center because I've been begging for one since Emeric is ALWAYS getting up by the tv and shutting it off! He even used the right kind of handles so I can use the childproof locks I have! :)

Our Occupational Therapist had scored Emeric a while back for sensory processing difficulties and I got the report today. They score them in different areas and they their performance among their peers.

In visual processing he scored typical. In tactile (touch) he scored probable difference. In oral sensory processing he scored probable difference. In auditory(hearing) he scored definite difference. In Vestibular(movement) processing he scored definite difference. She said Emeric demonstrates sensory processing difficulties. And that he has low registration which indicates poor modulation. She said it's like being unable to tune to a radio station. He demonstrates sensory sensitivity and sensory avoiding. She writes, "Children with this combination may not notice stimuli when they need to but once they do notice their nervous systems are intolerant to the input. His behavior may be inconsistent. Avoiding behaviors may cause the child to be overcome by sensory input and engage in very disruptive behaviors appearing stubborn or controlling. He may be viewed as fussy or may require a great deal of structure. He may demonstrate more variability in behavior which makes it hard to plan or anticipate what will work."

Man, she described him well! LOL The fussy, stubborn part is right on!

She also said that touch, oral sensory processing, auditory and movement are also areas of need. So basically they're going to be working on everything with him. The bad part is that this OT that did this assessment won't be our OT anymore and instead it will be another OT who doesn't know much about sensory processing difficulties. There is a possibility thought that if we do private OT instead of state funded that we could get the old OT back, which would be nice.

Anyway, that's my last update for the day!

Quick trip to the hospital

The last few days have been pretty busy around here! On Wednesday Emeric was acting strange and we weren't sure if he was having seizures or what he was doing so the neurologist wanted to see him Thursday morning. We drove up to Fargo to see her and she decided to raise his medication and if that didn't work she wanted to admit him after the new year for more testing. So we came home. As soon as I got home there was a message from her saying she wanted us to come back and she was going to admit him for a Video EEG. (VEEG) So, I flew around the house trying to get some stuff packed, brought the girls back to Jake's mom and dads house and drove up to Fargo AGAIN.

He was admitted Thursday night and hooked up to the VEEG. Hooking him up took at least an hour and was pure torture for him. He had to be held down while they glue the electrodes on and they use an air gun to dry the glue which is loud and scared him. Then they go back and glue on some pieces of gauze and then they go back and scratch all the electrodes which has to hurt and then they fill them all with gel. He was so tired afterwards and the neurologist wanted him up until 10:00pm.

The rooms are tiny and the cords are only a few feet long so he couldn't move around much which he didn't enjoy, but the neurologist let us leave early on Friday which was nice! She called our cell phone to give us the results and she said it was abnormal. She's going to maximize the medication he's on now and then if that doesn't help she's going to start him on another medication. So, we're hoping the medicine he's on now helps because starting another one is a huge hassle for everyone involved!

Here are some pictures of him in the hospital...

Tuesday, December 18, 2007


Excitotoxicity is the process by which nerve cells are damaged and killed by excessive glutamate. Excitotoxins over stimulate the brain cells neurons, causing them to die.

I'm sure you're wondering why I'm writing about Excitotoxicity. Here's why:

Emeric has excessive amounts of glutamate in his urine. Excessive glutamate causes seizures, neurological disorders, neurodegenerative diseases and a slew of other problems. Excessive glutamate will kill the cells. It causes excitotoxicity.

In our diet we can find excitotoxins. Remember, these overstimulate your brain cells and cause them to die. The most common sources of excitotoxins are MSG and Aspartame. MSG is found in almost all processed foods and is hidden under many different names including:

Monosodium Glutamate
Hydrolyzed Vegetable Protein
Hydrolyzed Protein
Hydrolyzed Plant Protein
Plant Protein Extract
Sodium Caseinate
Calcium Caseinate
Yeast Extract
Textured Protein
Autolyzed Yeast
Hydrolyzed Oat Flour

Glutamate is a neurotransmitter. Emeric's doctor suspects he has a neurotransmitter disease. Neurotransmitters with proper regulation and in the right concentration and balance function as vital transmitters of information that regulates bodily functions. Obviously you can guess that in neurotransmitter disease these transmitters aren't functioning properly and the range of problems that that entails are huge.

The research shows that some people are more susceptible to excitotoxicity than others but it also shows that the affects of excessive glutamate do not always manifest themselves right away. Which means that even if you don't get a migraine after eating Chinese food, like some do, it doesn't mean it's not affecting you.

I don't know if anyone else finds this interesting and scary but I do. Obviously that might be because I know it's damaging Emeric's brain and the excessive glutamate is likely the cause of his seizures. Feeding him anything with MORE glutamate in it seems like the worst possible idea! Really it seems like a bad idea for anyone as I don't think anyone wants their brain cells dying.

Since glutamate is in nearly all processed food it's hard to totally cut it out but in other ways it seems like knowing Emeric has excessive glutamate in his body already it should be really easy to keep it all away!

Here's a video on Aspartame(glutamate). Boring to most of you maybe!

Anyway, just some food(without MSG of course! LOL) for thought!

Monday, December 17, 2007


A fellow blogger inspired me to de-clutter and my house desperately needed it so here are some before and after pictures of some cupboards I got to today:





I cleaned both of the kids' rooms yesterday. I didn't take before pictures but here are the afters:

I cleaned out their closets and hauled about 3 garbage bags full of summer clothes, old toys, and outgrown stuff downstairs! I also organized their bookshelf which was in desperate need!

Caringbridge site

Everyone on the mito support group has caringbridge sites and they persuaded me to start one as they like to know how all the kids are doing on a day to day basis! :) I'll probably post the same thing over there, in regards to Emeric, as I will here but I wanted my blog to stay private yet I wanted those on the support group and elsewhere to be able to have access to that so this way I can keep this blog a bit more private. :)

I guess I got my wish.

For a less busy January. Emeric's Video EEG was cancelled and rescheduled for APRIL! UGH! While I didn't want such a busy month I would've hoped to have that done sooner than April. Especially since we scheduled it in November! He has these episodes that I'm not sure are seizures or not and the EEG is the only way for us to know for sure. Anyway, there's nothing I can do about it so I might as well stop complaining! :)

I should learn not to wish for things I don't really want! LOL

Friday, December 14, 2007

Happy New(BUSY) Year!

I know it's a bit ealy but I was realizing that 2007 has been just a tad busy for us and I was hoping 2008 would slow down but so far we're starting the new year off pretty busy. Emeric's video EEG is January 9-11th, then he has his tear ducts irrigated January 17th, and then we leave 2 days later for Cleveland to have his muscle biopsy and spinal tap done! Wouldn't it be nice after all of that to have a vacation? I'd love that!

Jake and I *might* get some kind of short vacation if we decide to go to the Weekend To Remember conference in Fargo in February. It's pretty expensive so we'll see but we haven't been away overnight for over a year!! We left Emeric once when he was 5-6 months old overnight but with breastfeeding I haven't really been able to leave him. He's not nursing as frequently now so it's probably fine. I worry about leaving him because come February he'll be taking at least 4-5 meds 2x a day and I worry that no one will remember to give him all of those! Well, I suppose I can stop worrying about something that's a few months away huh? LOL

It is SOOOOO cold today. And of course I have to go to town to ship out a couple things and it can't wait until Monday either! The van is on empty which means I can't even let it run for 20 minutes to warm up or it will probably run out of gas!!! Jake was telling me last night how I cannot let it get that low and that I need to keep it at least 1/2 tank. This coming from a guy who's ran out of gas twice in the last few months.!! Ha ha!

I have to give my niece piano lessons at noon so we won't be able to leave until after that and maybe it will be a bit warmer then.

Have a good weekend!

Thursday, December 13, 2007

30 days

That's how long they want Emeric on antibiotics for the infection in his colon that will not go away. UGH! I'd found out that our insurance company will pay for probiotics and that the doctor just needed to write up a prescription. I talked to the doctor and she said to talk to the GI but that I could feed him yogurt which would help. I realize that can't do any harm but I don't believe for a minute that eating yogurt everyday is going to get rid of a bacterial infection like C. Difficile, which can incredibly hard to get rid of. So, I'm going to ask the GI to write up a prescription for the probiotics and since he's not losing weight and not miserable I want to try them before the antibiotics for the next month!

In the meantime the doctor said I can schedule his eye surgery to irrigate his tear ducts. I don't want to put him under anethesia but his tear ducts have gotten really bad again and we need to get it taken care of. So, I guess we'll be doing that soon too.

Wednesday, December 12, 2007

I don't know about this...

I decided to try my hand at baking bread. Ha! I'm not sure this is something I can figure out. I baked 3 loaves. It said to let them rise for 7 hours. Mine didn't rise until at least 14 hours later. LOL Then I baked them and I'm not sure if you're supposed to cut slits in the top for air or what but I basically had a huge air bubble. The bread looks terrible but actually tastes pretty good. Guess I'll try again a different day!

I've been working on decluttering the house. I'm not all that well. It's overwhelming when you need to get rid of a bag of things in every single room of the house! I finally got a bunch of stuff listed on Ebay which is a start I guess.

I had the girls in today for a routine appt. and they were each measured and weighed. Kaydence is barely on the charts for height, I think she was in the 3rd percentile and for weight closer to the 10th. Kylie was right around the 25% for both if I remember right. They both had to have their fingers poked and both cried. My first thought was that if Emeric were old enough to talk he'd have told them to suck it up and be thankfully they weren't digging around in their arms with a needle for the 8th time! LOL I guess it's a good thing he can't talk because the girls were both pretty distraught. :)

On another note... I'm really struggling with what to do with Kylie next year for school. She starts kindergarten and the closer it gets the more I don't want to send her. Jake does not like the idea of homeschooling and thinks I'll be totally burned out doing it. Maybe he's right but how would we know that unless we tried it? I told him we'd save a ton of money on gas since I wouldn't be hauling her back and forth 2x a day. I guess we'll see, we still have some time to debate about it!

For now I'll let her learn what she's learned so far through watching Dora! :D

Monday, December 10, 2007

Birthdays and appointments(of course!)

Kaydence turned 3 on Friday! She was really excited but she kept telling everyone she was 4 and then 20. LOL She does act like she's going on 20 sometimes so I guess it's not all that inaccurate.

On Saturday my mom, Roger and the boys and Matt, Katie and their kids came and we celebrated our Christmas. I made my first ham ever which wasn't spectacular I have to admit. We opened presents and the kids were thrilled to get new toys!

On Sunday we had Kaydence's birthday party with Jake's side of the family. She had a Diego cake that she was very proud of and she got some more nice gifts!

We got our appointment to Cleveland set up for January 22nd. We'll have to be there Sunday night because he has pre-op stuff on Monday and then the procedure on Tuesday. They'll be doing a muscle biopsy, skin biopsy and spinal tap. We'll then fly out Wednesday morning I think instead of Tuesday night because I don't think he'll be feeling all that great on Tuesday yet. Not sure what we'll do for transportation... I know a lady there that offered to pick us up from the airport but then we'll have no way to get around once we're there. It's probably not a big deal though because they do have shuttles.

We also have a video EEG on January 9th-11th so it'll be a busy month for him! Hopefully though he can get a good week of rest before leaving for Cleveland the next week.

I feel bad leaving the girls so much that month but hopefully John and Pat will be able to keep them most of the time. They enjoy staying there because they know their house well and they're close enough that they could come home if they wanted to.

Emeric has been doing pretty good but I think he must be having headaches or something. I'm not really sure but he squints his eyes a lot lately like something is bothering him. I guess I'll talk to the neurologist when we go in January.

They'll be starting him on supplements as soon as the muscle biopsy is over so maybe we'll see some improvement there, I don't know.

Well, I suppose I better go figure out what the girls are doing, it's way too quiet in their room which can never be a good thing!!

Tuesday, December 4, 2007

We've got snow and one of Santa's Reindeer!

We've been getting lots of snow here! I don't really mind the snow, I hate the cold weather that comes along with it! We've been staying home more since it's been snowing which is probably good for our gas bill! The kids have yet to go play in it but I'll probably send them out later today if it stops snowing.

In other news we got a new puppy(the reindeer ;)). The girls named it Bandit and it's actually pretty cute despite the biting, the pooping on the floor, the biting at your ankles, etc.... It's only 10 weeks old so still a puppy and will hopefully grow out of some of that. Here's a picture of him:

Kaydence's birthday is on Friday and we're having a Dora party for her. EVERYTHING is Dora. From the cake to the decorations to the gifts! I think Dora is making plenty of money. Actually it's kind of ridiculous the price mark up on stuff just because it's got "Dora the Besplorer" on it!

Well, done with my rant, I better get to my laundry!

Sunday, December 2, 2007

Bear with me...

This has been a really long week, not entirely sure why, maybe it's just PMS! LOL

I came across this today and thought it was an interesting analogy of Mitochondrial Disease:

"Imagine a major city iwth half its power plants shut down. At lest, such conditions would produce a "brown out" with large sections of the city working far below optimum efficiency. Now imagine your body with one-half of its energy producing facilities shut down. The brain would be impaired, vision would be dim, muscle would twitch spastically or would be too weak to allow your body to walk, or write, your heart would be weakened, and you would not be able to eat and digest your food.
For large numbers are people, especially children, this is precisely the situation in which they find themselves due to defects in the mitochondria, organelles found in every cell of the body which are responsible for the body's energy production. Mitochondrial disease compromise their lives and can be fatal."

I think for the last few weeks I haven't really believed that Emeric has this. Maybe that's the whole "denial" phase I don't know. I think I'm over the denial phase and now it's really hitting me. I feel like no one understands and everyone wants to pretend like he doesn't have this or that everything will be ok. I'm sure they tell me this thinking it helps but right now, it doesn't. He does have this and while everything may be ok, it may not too. I don't plan on sitting around everyday consumed with the "what if's" but I do think I deserve some time at least to process it.
I don't want people to get tired of me talking about him but I do want people to understand that it is hard to know he's sick. Even when he looks "healthy" right now I can tell it IS affecting him. Just when I start thinking something isn't related I find out it probably is. Recently his eyes have been really purple underneath and he just looks tired all the time. I asked some of the people on the Mito support group if this was anything related and quite a few people's kids have the same purple rings. They've been told sleep helps and it's just related to the disease. It's related to the fact that he doesn't have enough energy, which is why he always looks tired or sick. I know all kids are different and sure it might not be why Emeric has those purple rings but it might be too.

I want my family to know that not an hour goes by that I don't think about how he's feeling or if he has a headache or if he looks "off" or if this recent illness is going to trigger some new symptom. I guess I want them to know because I don't want to feel judged. I feel guilty for talking about Emeric all the time when I have two other kids but I think, or hope, that once I can come to terms with everything that it won't have to be something I talk about all the time. Talking about it helps me cope with it because when I bottle everything up and don't talk about it that's when I end up depressed.

I'm not sure the point of this post. It helps to write it down because I'm tired of crying about it.

Please continue to keep Emeric in your prayers. As I said, his eyes have been really purple and he just looks tired all the time. His legs have been looking a different color than the rest of his body too, I have no idea why but I'm going to talk to the doctor about it. He also still has the bacterial infection in his colon and he had been doing better with his stools and now he's back to pooping 4-5 times or more a day. That's when he'll start losing weight again. :(

Thanks to those who read all of this.

Saturday, December 1, 2007

Some information...

I've found some good information on Mitochondrial Disease that I thought might help people understand more what the disease is.

Here's an excerpt from the UMDF(United Mitochondrial Disease Foundation) website that explains what Mitochondrial Disease is:

Basis of the Disease

mitochondrion Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common.

Diseases of the mitochondria appear to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems.

Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection.

This is a good video that explains mitochondrial disease and I found it really interesting and informative:

Right now our neurologist believes he has a possible neurotransmitter disease that is causing the mitochondrial dysfunction. We won't know this for sure until we have the spinal tap done. This is treatable with a medication called L-Dopa, which is a synthetic form of Dopamine.

Here's a link the the Pediatric Neurotransmitter Disease website:

It's hard to say whether Emeric's symptoms are caused by the Mitochondrial dysfunction or the Neurotransmitter Disease. My understanding is that the reason the neurologist believes he has this neurotransmitter disease is because he has generalized seizures, meaning the seizures don't start in one specific point in the brain but rather all over the brain and on both sides. Generalized seizures aren't common with mitochondrial disease. Most patients with mitochondrial disease have Partial seizures so I think Dr. Parikh, the neurologist is looking at possible treatable causes of the Epilepsy, which would be this neurotransmitter disease.

In the meantime we'll hopefully be able to start him on the supplements they want to give him to help with energy and to slow down the progression of the disease.

I want to thank everyone who prays for him. This week has been a really hard week because a woman on an online support group that I'm on lost her 14 year old son on Tuesday to mitochondrial disease. It's scary to know that can happen. Not that it will, just knowing that the possibility is there is always on my mind.

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