Saturday, April 26, 2008

I've really been more at peace this last week with Emeric's situation than I've ever been. Everyday I pray for that peace and a new strength to get through the day without continual worry. It's hard for me not knowing what God's plan is for Emeric's life and what he has in store for him but really I don't know what's in store for Kylie or Kaydence's life or for my life or anyone's life for that matter. None of us are promised a long, happy life and I've realized that continually worrying about Emeric has done me no good. Yes, being concerned has done me good and I'll always be concerned for his health but I feel like those are valid concerns and I don't think that's wrong, I think it's natural.

We've been studying the book of Daniel at a Bible Study I've been in and how God has already answered our prayers before we've even answered them. I keep thinking God is not giving us answers but we've gotten a lot of answers in the last year. We've learned a lot about what's going on with Emeric and obviously for right now God thinks we know enough. We know what we need to know to take the best care of him and knowing anything else doesn't matter at this point. Now, I can't always say that I'm ok with not knowing but I don't have to be ok for the next week, or the next month or the next year, I have to be ok for today. And for today I am.

For today I know that God planned Emeric's life before he was born and that this is the life God chose for him. This is what he chose for us. Sure I wish Emeric didn't have seizures and that he was healthy but then I also think, but this IS him. If you change all of that and you take it away you change him. And so I have lots of conflicting emotions but right now I feel at peace. When I start trying to think ahead is when I feel very scared but worrying about what's ahead doesn't do me any good because even if I know what's ahead ultimately I CANNOT change it. Either way God is in control. So, I can try to sway God's mind and tell him what I want but really is that best? I mean, do I know what's best for Emeric? Better than God? Obviously the answer is no. So, when I think of it that way I realize that I want God to be in control and I want to put Emeric in his hands and not mine.

Isaiah 26:3 "You will keep in perfect peace all who trust in you, whose thoughts are fixed on you."

Monday, April 21, 2008

Emeric and his cousins Brock and Ethan

I'm outta here!

Jake and his brothers

If you're squeemish don't look... Emeric's biopsy :)

These toes taste good!

Another fall and another fat lip!

Easter Sunday... Don't they look thrilled!

Friday, April 18, 2008

And so it begins...

A few weeks ago Kylie asked me how a baby gets out of a mommy's tummy. The conversation went something like this.

Kylie: Mommy, how does a baby get out of you tummy?
Kaydence: It breaks out. Then you go to the hostibul.
Kylie: Does it break out of your tummy?
Me: Well, um... um....

Kylie: Mommy, HOW DOES IT?

Kaydence: When you get bigger you'll break out of mommy's tummy Kylie.

Kylie: Be QUIET Kaydence.

And so I told her how. LOL I won't tell you what I said because my mom will read this and she will call me and say, "Nicole, I can't believe you told her that!" LOL

;) It was honest. Not explicit, just honest. Haha.

So, fast forward a few weeks... Last night we're eating supper and Kylie says, "How does a mom get a baby in her tummy?" or something along those lines.

Me: Crap. Here we go again. :) Well, when you get married if you want a baby then a mommy and a daddy can have one.

Kylie: But how do they make one?

Me:(praying for words of wisdom at this point. I suck at this kind of thing.) Well, if you get married and decide you want a baby then you can make one.(Yes, just another way of saying what I had already said, but I thought maybe I could trick her. LOL)

Kylie:(Annoyed at this point that I'm not answering the question and raising her voice a bit) But mommy, how DO YOU?

Me: (Realizing I am NOT getting out of this conversation) Well, there is a part on a mommy and a part on a daddy that can make a baby.

Kylie: Oooohhhh.

THANK GOD she did not ask me what those parts were! LOL I really opened myself up there. Ha ha!

Tuesday, April 15, 2008

Epilepsy Walk

It looks like we're going to have enough people for TWO teams!! My friend Anna's entire family wants to walk because they too have a lot of people in their family affected by Epilepsy. Quite a few people from our church are also going to walk. In the next couple months I'm going to contact the local newspaper to see about doing a story on the Epilepsy Walk. I received a packet of information from the Epilepsy Foundation and they gave some ideas on contacting the local media.

The walk isn't until August but I want to get a jumpstart on it because I know how good I am at procrastinating with things! So, I'm going to make everyone aware of it now and then I'll probably wait until sometime in July to do most of the fundraising.

If you, or anyone you know would like to donate you can do so at: You can also forward that address to anyone you know. This money goes to the Epilepsy Foundation and helps with awareness and funding for finding the cure for Epilepsy and for support for those living with Epilepsy.

Friday, April 11, 2008

Emeric is sleeping, Kylie is watching cartoons and Kaydence went with Jake somewhere. It's very peaceful here! I'm listening to music on Youtube. :)

I've gotten in one of those moods again where I find every possible piece of information I can find regarding these specific diseases that Emeric is being tested for. None of this is probably of much interest to anyone but me but I enjoy using this blog as my journal and I can go back and look through it so I decided I was going to post some sites on Mitochondrial Disease if anyone wants to read through them. I go back in forth with this disease in regards to Emeric. Some days I feel like there is no possible way he has it because he is just not sick enough and not severely affected enough and then other days I talk to people who say you don't have to be severely affected or that their kids weren't even as affected as Emeric at that age and that their kids didn't become affected until later.

Anyway, there is this scale where you get points for specific symptoms and you can get up to 15 points with 4 of those coming from the muscle biopsy.

A score of 1 means Mitochondrial Disease is unlikely.

A score of 2-4 means a possible mitochondrial disease.

A score of 5-7 means a probable mitochondrial disease.

A score of 8-12 is a definite mitochondrial disease.

Emeric's score without the biopsy results yet is 6. That put him towards the high end of a probable mitochondrial disorder. That means if anything is abnormal in the muscle biopsy(most of the abnormalities are 2 points at least) he will be in the definite mitochondrial disorder category.

Anyway, it's all interesting to me. Of course if he actually has Mitochondrial Disease I probably won't use the word interesting. Right now it's just sort of something to look at but if it becomes reality I'm sure I'll feel differently than I do now. I've learned more about biochemistry in the last few months than I ever learned in school!

Here's a really brief description of Mitochondrial Disease. I still have people asking me all the time what it is so you can read this and know for yourself and tell anyone that asks. :)

About Mitochondrial Disease
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.

The Mitochondrion

Thursday, April 10, 2008

I hate snow.

The kids are all at tail end of their colds now. Kylie has been kind of tired all week and running a low grade fever and Emeric is snotty and crabby and Kaydence is just snotty in the personality descriptive sense of the word! :D

Last weekend it snowed 15+" of snow which is RIDICULOUS for this time of year and it's currently snowing again! Have I mentioned hating Minnesota? Next week it will be 100% humidity and we'll be complaining because we don't have central air! The weather is crazy in this state!!

I'm hoping to get some painting done this weekend. I want to finish the girls' room and also paint their dresser and get some knobs for it and finish Emeric's room. We've still got our bedroom and bathroom to paint but that can wait. The girls walls are getting filthy from all their fingerprints!

In other news I decided a week ago to stop biting my nails. I bought some nasty, pepper tasting polish that's supposed to be a thumb sucking deterrent but I only used it one day because well, it's disgusting. But... I haven't bit my nails since!! Woohoo! They're actually getting long although not strong since I obviously lack calcium but hey, I'm proud of myself for not biting them anymore. I guess small things excite me now like quitting a bad habit. :)

I'm also hoping to have a rummage sale here in the next month or so and get rid of all the kids' clothes from the last year. I just had a huge rummage sale last summer but I still have tons of CRAP again. Every year I vow not to buy the kids tons of clothes and every year I have tons of clothes. There's another bad habit I might kick someday. Although not likely! :)

Well, I'm off to bed. My head feels weird and my eyes feel funny and I don't know what my deal is. Maybe just looking too long at the computer screen. Although again, another bad habit and it's never really made me feel like these in oh say the last 6 years of being addicted to hte internet so I'm sure it isn't the culprit now either.

Saturday, April 5, 2008

So, about the ER

Yesterday I posted about how we hadn't been in the ER forever. Well, of course then last night that changed and I had to take Kylie in. Yes, Kylie. By far the healthiest of the 3! She has croup and she was having a really hard time breathing. I brought her in and her Oxygen was at 79% which was very low. They gave her oxygen and a nebulizer treatment and a steroid shot and she felt much better and her oxygen was high so they let her go. She's doing better today so hopefully tonight she doesn't get bad again.

Now let's just hope Emeric or Kaydence don't get it now!

Friday, April 4, 2008

The weather has been getting much warmer this week which has been so nice! Today it's supposed to be 57! Woohoo! It's so muddy outside though that the excitement of going out evens out with the dread over muddy clothes!

The kids have been doing good. Kylie get up each morning and does her "stretches". LOL They learn them in gymnastics and are supposed to practice them at home and she always does a good job remembering!

Emeric is sick with something again. A cough that sounds pretty deep since yesterday. I'm hoping not to have to bring him in but i guess I'd be better today than over the weekend. We have an Urgent Care here now which is great because I HATE the ER. Thankfully we haven't been to the ER in months. I don't remember the last time.

Still no word on any results from Cleveland. I'm hoping maybe next week for the spinal tap results but we'll see!

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