Thursday, November 27, 2008

Thanksgiving Part 2

My thanksgiving dinner turned out pretty well. We have a ton of food left so if you'd like to stop by let me know and I'll make you a plate! :)

In keeping with what I'm thankful for... Coconut Cream Pie...



These glasses that hide my desperately need to be waxed eyebrows. :)

And, with a little more seriousness I'm really thankful for a lot more. My family, my girls, Emeric's health, my friends, a warm house, food on the table, cheap gas prices, and my faith in God. Just to name a few.

I also really, really encourage you to read this... I've linked to this blog before but her entry today was so honest and real and I don't think you'll regret spending a minute reading it. Just take my word for it ok? :)

Thanksgiving: I'm full of thanks. I'm thankful. I'm full, thanks.

I decided throughout the day I was going to take pictures of things I'm thankful for. Here's a few things... I'll probably add more later. Especially after my ham is done. YUM.


































Wednesday, November 26, 2008

Apple Butter Revisited... Oh and Allergy testing


A word of caution about the Apple Butter. I would limit your intake to around 2 T. or plan on a stomach ache. It's SO sweet that I was feeling sick last night after 2 pieces of toast. Of course it didn't stop me from eating it this morning but I only ate 1 piece. I'm very disciplined that way. :)

So Kaydence had her allergy testing done this morning. Let's just say it was less than enjoyable. Imagine holding a 3, nearly 4 year old down for nearly 2 hours while she's repeatedly poked with needles and screaming. She was so scared and I felt horrible. The worst part was that they didn't even test her for any food allergies!!!!! I specifically told the doctor that was my biggest concern but apparently they don't do food allergy testing with the skin they only do that in the blood and since her last test only showed an allergy to dairy and nothing else they didn't repeat it. UGH.

Instead they tested her for environmental allergies. They tested for allergies to grass, weeds, ragweed, birch(I'm assuming this is the tree?), indoor and outdoor molds, dust, dust mites, cats and dogs.

She's allergic to ALL OF THEM. Every single thing they tested her for she reacted to! Some worse than others. Cats were the worst.

Her poor arms were so red and irritated and I felt so bad that I promised her McDonald's, playing at the play place in the mall and pop. LOL She gladly accepted my offer.

We're home now and she's still manipulating me into watching cartoons. After all, her arms STILL hurt. ;)

Tuesday, November 25, 2008

Apple Butter

I made apple butter today and thought I'd share the recipe. It was much easier than I anticipated and it's sooooo good!




Apple Butter

8 apples, peeled, cored and chopped

4 c. white sugar

4 t. ground cinnamon

1/4 tsp. ground cloves

1/4 tsp. salt


Fill slow cooker with apples, sugar, cinnamon, cloves and salt.



Cover and cook on high for 1 hour. Reduce heat and simmer, stirring occasionally, for 12 hours.


*It will get very dark. It's also a lot lumpier than store bought Apple Butter although I did spend a lot of time mashing the apples down because I wanted it smoother.


Fill small jars or freeze!





















Bits & Pieces

It's been a long week around here. Jake was gone Thursday-Saturday, home Sunday, and gone again through Wednesday. Have I mentioned I hate truck driving? He's got a job opportunity lined up for spring and it should take him through the winter so that will be really nice. He doesn't like being gone either.

Kaydence has her allergy testing in the morning and I'm not even mentioning it to her because I don't want to hear, "I don't want to!" all day. I figured I'll tell her in the morning. Hopefully it goes fine. If it were Emeric I wouldn't worry about it at all. He's been through so much and has such a high pain tolerance he wouldn't even care but Kaydence on the other hand is anxious about even stepping foot into a doctor's office. I'm also hoping she's allergic to nothing other than dairy because it's already a huge pain cutting dairy from her diet and I don't want to have to cut anything else!

Homeschooling is going well... Kylie is getting better at reading some words and understanding concepts I've never taught her which is encouraging. Kaydence now recognizes all her letters and can write some of them, which she couldn't do a few months ago. I think I've found a bit of a groove and the sort of curriculum, if any, that Kylie likes. I think I know what curriculum we'll go with next year and it will be different than what we have now.

Kylie also really wants to start playing the violin so I'm going to look around for a cheap violin and try to teach her a few things myself. Most instruments are pretty easy to learn once you can read music and knowing how to play piano helps too. We can't afford to put her in lessons but I really want her to play if she would like to. I would love to start playing again myself but adult violins are ridiculously priced.

In other news my house smells sooooo good today because I'm making apple butter. It has to slow cook for TWELVE hours though so it won't be ready until tonight but I don't care, the smell alone is tasty enough!



Saturday, November 22, 2008

Kylie has been gone for the last 3 days with Jake in the truck so it's just been Kaydence, Emeric and I. Kaydence wasn't quite sure of what to do without Kylie around but she adjusted pretty quickly and was thrilled to watch movies, stay up late, and sleep in my bed. She's taken full advantage of getting more 1 on 1 time but she's also missing Kylie.

I've been searching around for ideas for Christmas and I'm having a hard time coming up with anything. I'd planned on getting Kylie a hand held Leapster but I can't bring myself to spend the money on one and I'm trying to decide how much I want to get them electronic stuff. I see everyone getting their kids electronics for Christmas and I'm realizing how much our kids are getting further and further away from simple toys. Right now some ideas I have are:

Emeric:

Set of cardboard blocks, those big ones you can build with...
I'd also love to get him this chair from Ikea that spins because it's be great for him but it's spendy and I doubt I'll end up getting it: http://www.ikea.com/us/en/catalog/products/40100253

Kylie & Kaydence:
I'd like to get them a barn with horses, a fence, etc... I'm still looking...
They both like those I Spy books so I hope to get some of those and then I found a neat game by Eric Carle, The Hungry Caterpiller so I'll probably pick that up. I'm looking for some wooden food for their play kitchen because they had a bunch of crappy plastic food but it's all been wrecked in the last year or so.

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We have our Thanksgiving service at church tomorrow and Jake and I have to play all the music for it. We've practiced a couple times but I'm nervous to play about 40 minutes worth of music. After church Jake's family all get together at his parents' house for Thanksgiving dinner. I doubt we'll do much of anything on Thanksgiving Day because everyone is busy. I thought about making a huge dinner just for us and I might still end up doing it. I better decide though so I can buy(and defrost) a turkey!

Well, I'm off to play a game with Kaydence before I have to start dinner. I made a Coconut Cream Pie for Jake for dinner. I hope it turns out! I'm not usually quite so domestic! :)


Monday, November 17, 2008

View this montage created at One True Media
My Montage 11/17/08


Jake's cousin's little girl passed away yesterday. She would've been 2 in January. Her mom still needs more surgery to repair a shattered heel and the dad also has a broken ankle that he has not let them fix yet. Please keep them in your prayers. Life can change in the blink of an eye!


Sunday, November 16, 2008

Saturday, November 15, 2008

Control

I was looking back through some stuff I found online and printed off a while back about children and control. Of course I forgot to write down where I got them from so I'm sorry about the copyright infringement. :)

"There is ultimately nothing 'strong' or leaderlike about imposing authority on a child. Rather, it takes a great deal more self-discipline and momentary wisdom to recognize the child's need and help him or her meet it. The abuse of power creates the seed of rebellion."

"So, I have never wanted to control my children. I've wanted them to learn to be "under control" in that they understand social/behavioral expectations and can control themselves within acceptable limits. I have felt, though, that exerting control over them is not the most effective way to nurture that self control as I have been very aware in my own personality of the tendecy to push against controls exerted from the outside."

It might be easy to say we don't want to control our children, although I know many parents who believe that's the goal, but I think it's much harder to follow through.

Thoughts?

Friday, November 14, 2008

Prayer request

Please say a prayer for my husband's family tonight. His cousin was in an accident tonight and her two year old daughter broke her neck and is in critical condition. His cousin(the mom) broke her legs, her hip and her foot.

Please pray for them and for their daughter especially.

Thursday, November 13, 2008

Patience

From Wikipedia:

Patience (ˈpā-shənz) is the state of endurance under difficult circumstances, which can mean persevering in the face of delay or provocation without becoming annoyed or upset; or exhibiting forbearance when under strain, especially when faced with longer-term difficulties. It is also used to refer to the character trait of being steadfast.

I have never been a patient person. I did get married after a mere 8 months of dating my husband and was pregnant one month later. :) I get impatient waiting for my fingernails to grow so I bite them all off. I get impatient waiting for my pants that I wanted to wear to get dry so instead of just finding a new pair I put them on damp.

But the fruits of the spirit are, "love, joy, peace, patience, kindess, goodness, faithfulness, gentlesness and self control." Galatians 5:22

"For when your faith is tested, your endurance(patience) has a chance to grow. So let it grow, for when your endurance is fully developed, you will be strong in character and ready for anything." James 1:3-4

Do you know what the verse before that says? James 1:2? It says, "Whenever trouble comes your way, let it be an opportunity for joy." Really? How many of us are joyous when trouble comes our way? I can't say that I am. Instead I'm overcome with worry, fear, anger, uncertainty and the list goes on. Today in Oswald Chambers, My Utmost for His Highest the devotion is on faith. He says, "All our fears are wicked, and we fear because we will not nourish ourselves in our faith. How can anyone who is identified with Jesus Christ suffer from doubt or fear!"

I've been really struggling with patience in the last few days. I'm having a hard time being patient and waiting for a doctor to call me back with an answer as to why there are these genetic abnormalities with Emeric and what they mean in relation to his symptoms/disease. It's hard waiting 2 months for test results and then getting them and still not knowing their significance, if any. And we heard about another genetic abnormality found on yet another test. Again, we don't have an answer.

At least not in regards to these tests.

I know the answer though. And it comes from God. He says, "I am wonderfully good to those who wait for him and seek him... For the Lord does not abandon anyone forever. Though he brings grief, he also shows compassion according to the greatness of his unfailing love. For he does not enjoy hurting people or causing them sorrow."

God has given me an answer. And I think of it like this:

My dear child,
I too have watched my son suffer, I know that pain. But just as the purpose of His death was fulfilled so will My purpose be fulfilled in you. I will never leave you. Rest in me, let me carry your load. Trust in my plan and understand that my love for is greater than you could ever know.

Your Loving Father

Every so often God gives me a glimpse into understanding His purposes. Could I learn patience another way? Probably. But, would it be meaningful enough to really change me? Probably not. You see, God uses the things most precious to us for good. He is using Emeric to break me. To bring me to a place of complete and utter dependence on him. Do I still struggle? Of course! Daily! But the difference is that I hear God's voice now. I hear him telling me to lay it down at his feet.

We all go through challenges everyday that test our patience. But we're given a choice. We can choose to get irritated and ask a million questions; why me, why doesn't anything ever go my way, what did I do to deserve this, don't I deserve _____?

Or we can choose to say, You know what God. I don't understand why you're bringing me through this but I will trust in Your plan. I know there's a purpose and that is to strengthen my faith. It's to bring me closer to You.

And isn't that what we want?

We don't learn lessons the easy way. We don't learn lessons of endurance when everything falls easily into place. We don't learn to lean on God until we're weak and can't stand on our own.


I waited patiently for the Lord to help me,
and he turned to me and heard my cry,
He lifted me out of the pit of despair,
out of the mud and the mire.
He set my feet on solid ground
and steadied me as I walked along.
He has given me a new song to sing,
a hymn of praise to our God.
Many will see what he has done and be astound.
They will put their trust in the Lord.
Psalm 40:1-4

Wednesday, November 12, 2008

Updates

I had to take Kaydence in today for an appt. for her allergies. They really didn't do anything but they want her to have skin testing done in 2 weeks. Won't that be fun!! She was so worried today that she was going to have to give blood so thankfully we didn't have to.

I left Kylie and Emeric with my friend and she said Emeric was acting kind of funny and falling or not being able to walk real well. I wondered if maybe he wasn't feeling good because he's kind of got a runny nose. I came home and gave him a nap and now he's just lying on my lap. If I put him down he cries.

I don't know if many of you read Emeric's caringbridge site but we heard back from the developmental ped and it turns out Emeric has duplications of 2 chromosomes. Both relate in some way to the Mitochondria and likely explain why he has Mitochondrial Disease. He did say they could be meaningless mutations that don't explain his symptoms but it doesn't seem that way. I'm waiting for a call back from the neurologist to see if we can get some answers as to what this means. The ped also wants me tested because he said if I carry the same duplication that the girls would have it to. That's a whole other topic that I don't feel like getting into but basically it's nice to know how Emeric got it and where it came from because it can have implications on the girls and their future children.

I'm feeling emotional about all of it today but I think people don't like to hear the negative stuff so I'll leave that all for another day as well! :)

Jake is gone for a few days trucking so it's probably going to be a long week!




Sunday, November 9, 2008

Oh deer.

Jake went hunting for the first time this weekend! As in the first time ever hunting! He also shot his first deer! He said it was so young it nearly had spots on it. LOL I don't know what he plans on doing with the meat since our 2x4' freezer is filled to the brim with frozen corn. Maybe I'll get a picture later when he goes to cut up the deer.

I asked him why he decided to hunt this year and he said because Kylie told him he should really go kill a deer so we have enough meat for the winter.

We went out with a bunch of people after church to eat lunch and we walked in and it was filled with hunters and Kaydence saw all the orange and got a perplexed look on her face and said, "Huh, it must be trick or treating!"

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It also looks like we'll be making a trip to the allergist again for Kaydence. She's been complaining of stomach pain for a while now and breaking out in hives a lot after eating. Today she had chicken strips and I didn't even let her have ranch because it's been making her break out and she still ended up with hives! I know there are traces of dairy I'm sure in the breading so I'm wondering if it is that or something else she's developed. She's due to be retested anyway so I'm going to make an appt. for her tomorrow.

In the meantime we're needing to drastically cut her dairy out. Right now we let her have the dairy found say in cookies or crackers but now she's even reacting to that. We'll also have to see if she can stay on the goat's milk or not. She's tolerated it ok in the past but lately her allergies have been worse and most people with cow's milk allergies also do not tolerate goat's milk.








Thursday, November 6, 2008

It's been a busy week around here!!

I had a dentist appt. on Tuesday and it was HORRIBLE. They couldn't get my mouth numb even with roughly 15+ shots of novacaine. And no, I'm not exaggerating. They gave me two different kinds to try to get it numb but I could still feel it. I was shaking so bad I thought I was going to shake off the chair. The dentist also said my jaw isn't working properly and basically the joint isn't working and he wants to do a "further, more in depth assessment" of it to decide what to do. All I know is I aint wearing any kind of headgear! :) Anyway, 2 days later and my jaw is still hurting from all the needle pokes and manual jaw manipulation.

Emeric had an appt. today and was casted for orthodics. He did so well! He just sat there and played with a little timer thing that beeped while they held his feet. We picked out a camoflauge pattern for the orthodics to be covered with. He also had a hip x-ray because according to them he's "extremely hypermobile" and they wanted to make sure his hips were sitting in the joints correctly. And they were. I told her he'll make a good contortionist someday with his flexibility. It really is pretty amazing!

We also got a prescription for a bed for him. Right now he's in a crib that's being held up on one side by a dump truck. Again no exaggeration. It was a cheap crib and it's been around since Kylie so 5.5 years. It was also one that was recalled a while back and we stupidly never got it fixed. So anyway, we're hoping insurance will approve this new bed. We don't want to buy a new crib that he's going to grow out of shortly but he can't be in a regular bed either because he doesn't have much awareness for safety and when he gets hurt you hardly ever know it. He also climbs everything and would be out of any kind of regular bed in no time!

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The girls have gotten so competitive lately! The other day Kaydence said, "Mom, 5 is more than 4." and Kylie said, "How does SHE know that?" in an she's younger than me and shouldn't know things I don't tone. I said, "She's smart!" and Kylie didn't miss a beat(other than the time it took her to cross her arms and huff loudly) by telling me that she wasn't smart. I said, "You're both smart!" and before I could finish Kaydence said, "And 6 is more than 5!" I had to keep from laughing because Kylie was visibly frustrated and annoyed that Kaydence seemingly knew more than her.

A few hours later Kylie answered a question about something that Kaydence didn't know the answer to and she just shrugged her shoulders, smiled and said, "I guess I'm smart too!"





Tuesday, November 4, 2008

Halloween

All the kids were clowns for Halloween. We dressed up and went into town to the mall first and then with some friends to A&W because the kids got to eat free. They got their picture taken with the A&W bear. It was so warm out which was really nice because it's usually so cold. After we left town we went to our church for a party there. Emeric ended up winning the costume contest and Kaydence got second place! :)




























Sunday, November 2, 2008

I added all these videos because I think it's interesting to see how differently people are affected by Mitochondrial Disease and how some people present as adults, some as children, some after an illness, etc.

I have some pictures from Halloween I intend to get on here soon too! :)



Saturday, November 1, 2008

Living with Mitochondrial Disease

Living with mitochondrial disease

Faces of Mitochondrial Disease - The Swinns

The Faces of Mitochondrial Disease

The faces of Mitochondrial Disease

A few requests...

I've asked for prayer before for this little boy but I'm asking again for you to please pray for Landon. He is very, very sick. He was recently discharged after a few months in the hospital and he's back again.

http://www.caringbridge.org/visit/landonweber


And, if you haven't checked out My Charming Kids blog please do. You'll have to read back a bit to get the full story but it's an amazing one and it's been awesome to see the miracle God has performed in this family through their baby.

http://www.mycharmingkids.net/

Also please continue to pray for Matt and Lesley and their family. You can check out her blog at:

http://thebigpicturelawyman.blogspot.com/

One thing all of these families have in common is incredible faith. Each of their stories are very, very different and yet they serve the same God. His faithfulness is evident throughout as is theirs to Him. Each day I check their sites and each day I am blessed. Something always catches my attention and it's always what I need. Their stories remind me to be thankful and to never waver in trusting God's plan.

"Because of the Lord's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness." Lamentations 3:22-23

"Let us hold unswervingly to the hope we profess, for he who promised is faithful." Hebrews 10:23





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