Our house...

Hey my blogging buddies!!! :) we close on the house October 5th!! :) Oh, and YES this is the house we are already living in! So, double perk! Been here a year and a half... buying and don't have to move! :) Yippy!

It's wednesday!!

Well, today is wednesday... that officially means we are half way through the week!

We do have good news! We are getting ready to purchase our house! Yippy!!! We have wanted to for a year but because of the financial out go for medical stuff... we just haven't been able to! So, we started praying and asking God to help us if this was His will. He did! We were blessed with a blessing that will allow us to put a deposit down! :)

The kids are doing better medically right now... no crisis every time we turn around! That's always a relief. We are working on our up coming appointments for October! Loads of them to have! So, say some prayers for us as we make decisions and move forward.

Hope all have a great wednesday! ~Mindy

Good morning!!!

I can't believe how much I have gotten behind in my blogging! Wow! Things are just really busy here! I have a bunch of great pictures from the weekend... but I can't load them on my computer. It's a dinosaur! I pray one day I can have a nice computer... until then, I'll wait till I have time to load them on Jeff's to post them! :)

We had a great time this weekend. with all that has been going on, we just needed some time away. So, we decided to take off to the Fort Wayne zoo. We have membership there so hey.. good time to take advantage! My sister got to go along and we just had a WONDERFUL day. We all decided to talk about nothing negative and just enjoy the day... I didn't realize just how much I needed that but I sure did!!!

the kids thought it was great. I got bit in the butt while we were at the zoo. We were in the goat petting area. Joey got scared so I was trying so hard to get him out of the goat area. As I bent down to pick him up and lift him over the fence to daddy... yep... you got it... I goat totally bit my rear end!!! Ahh... so much fun! I swear he left a mark too! Oh well, gave every one watching a good chuckle so no damage done!

This week, we are just working on setting into more of routine with our home school and our daily stuff. So... we'll see how it goes! Feel free to check out home school blog periodically for fun pictures of the kids!

Have a great week all... just in case I don't post again for another week! Ha! Later! ~Mindy

Running in circles...

Do you ever feel as though you are running in circles? I am that way right now! i just am exhausted! ug!

Miss Abby is having some heart problems right now. Racing a good bit on her. So, genetics is sending her to cardiology. They noted it on exam as well. So, cardiology called on our way home from Cincinnati monday to tell us that they needed to see her thursday. So, we go in tomorrow. Sissy will be having a bunch of testing done while there. Probably echo, ekg and maybe blood work. then they will be sending her home on a haulter monitor. Should be exciting!!! she isn't keen on wearing that stuff on her body! We'll see.

last night, Cardiology called again to inform us that genetics wants Joey checked over as well. With looking at a muscle disease, the heart is a muscle as well so they will be tracking that closely to make sure all is ok there. They did say that they want to do an ECHO but because of joey's age and needing a good clear picture, they would have to put him under. Normally, they just sedate but because of Joey's breathing problems, he has to go completely under. This TERRIFIES me because of Joey's last experience with going under. He did NOT do well at all. so... we'll see. I'm going to talk to Dr. Spicer about it and see what he thinks and if we can't give the ECHO a try some other way.

Well, off to begin school! Have a great day every one! :)

Catch up day...

Today seems to be a catch up day here at my house. We have to clean up from the rat race of Thursday and Friday... OK, probably Wednesday too! I was toast after my pampered chef party. Washed up my dishes and left the rest for another day! Jeff had a funeral to go to this morning and then he has a wedding to perform tonight... so, he's pretty much gone for the day. So... it's me, my kids and my messy house! We'll hope it's a clean house by the time daddy gets home.

The kids are doing OK today. Warn out still but having better days. We have begun adjusting life right now with slowing way back. Picking one thing to do in a day instead of running them ragged. For them, getting warn down is taking like 3 days to recoup right now... so, no since in wearing them out.

Hope all have a great weekend! ~Mindy

Encouragement...

A friend e-mailed me with this verse this morning...

We have troubles all around us, but we are not defeated. We do not know what to do, but we do not give up the hope of living. We are persecuted, but God does not leave us. We are hurt sometimes, but we are not destroyed...... So we do not give up. Our physical body is becoming older and weaker, but our spirit inside us is made new every day. We have small troubles for a while now, but they are helping us gain an eternal glory that is much greater than the troubles. We set our eyes not on what we see but on what we cannot see.... 2 Corinthians 4:8-9, 16-18

Long day...

I do honestly struggle to know where to start. We had an unplanned trip to Cincinnati today. The kids have continued to be extra tired and worn down. They are both through their recovery periods of their surgeries and should be back to base line, but they are not. They have taken some strides back wards.

We saw Genetics today. Some of Joey's muscle biopsy results are back. Right now they are saying that the Mitochondria have significant changes notated in them. This could mean many things, not a set answer right now. However, what they are seeing for sure is that Joey would have some sort of muscle disease similar to muscular dystrophy.. however, every thing is strongly leaning towards more of a mitochondrial deficiency right now. The rest of the results will trickle in over the next two months.

Considering the direction that this appears to be going right now, we are to really take heed to the complaints of tiredness or pain. If they want to stop something, we stop... etc. It's really hard to think we are headed down this path. I am praying that God will change the answers, but as a mommy, I have to deal with the emotions as they come in order not to crack on the day they give us the "official" diagnosis.

They have decided to restart two of the 3 meds in the mitochondrial cocktail. These are supplements that will help with energy and strength. They will be starting on CoQ10 and Riboflavin. We'll give it 30 days to see if we see a change... if not... we'll stop them both.

Also, miss Abby has to see a cardiologist. She's been complaining of her heart beating fast. Today, upon exam they found that her heart is beating faster than it should when she takes a breath.

Over all, we have a lot to work through right now... lots of information put on our plate today....

Sleep....

It's 4 a.m.... I want sleep! But for some reason... sleep is far from me!

good Monday...

Well... we had a good day today...

Completed our first day of school! Check us out on the home school blog!

We went in and got Abby's glasses fixed

Exchange the ball we had for turtle... it wasn't keeping turtle in... so... I didn't want to continue the shuffling chase! so...we have a secure ball! :)

Got to go to a friends Mary Kay party... Yep... another one under my belt! LOL!

Got to hug my babies when I arrived home! High light of my day!

Got to share in precious moments with Abby. She has been praying for my friends baby, Asher. her heart is so tender! God love her!

Now... I get to go to bed...

School is in!!!

Well, my desk is nice and clean and school work is organized and ready! We start school tomorrow! :) I'm so excited! The kids are too! It should be fun! you'll have to check out our home school blog for updates tomorrow after we are done. The link is to your right! Nighty night all!

It's a wonderful day!!!

The kids are extatic! Ariel and turtle have their own balls now! :) Yippy! The race was on... oh and turtle escaped his ball! It was a fiasco, but mommy saved the day and caught him!

Fun with Ariel...

Well, the gerbils have been a hit! This is Ariel in her ball. WE have to get a ball yet for Turtle. We went to walmart tonight and they didn't have any! So, we'll stop at the pet store tomorrow when we go grocery shopping. Ariel did have her first flying lesson! Joey came running into the room and accidently kicked her ball. It flew in the air and beside the light stand! LOL! Poor little gerbil!

Wonderful love...

Today, I find myself struggling. The kids had a big day yesterday and it is showing. After tumblling class, Abby laid her head in my lap through dinner and said she was so tired. Then, today, Joey is crying just to stay home. He is tuckered... Those things make it hard on a mommy's emotions... I just want to lift the fatigue and make them feel wonderful! My encouragement today comes from the Psalms:

Psalm 36:7

How Priceless is your unfailing love!

Both the high and low among me

find refuge in the shadow your wings.

No matter what the day holds... He is our safety! He ultimately is the one who holds us in and protects us... my life and my babies lives are his! Amen!

Busy busy day!

First off, thanks to every one for the birthday wishes! :) Means a lot!

second, sissy started her tumbling classes today. She had a BLAST! OH my words! I have never seen her so happy! Here are some pics... from my cell so... sorry in advance!

Learning the bridge...
Stretching big!

Reaching...

Brand new outfit! Isn't she a doll?

The second half of our day was adding some family members. The kids got gerbils! Abby named hers Ariel and Joey named his turtle! Ha! Cracks me up.

Abby hasn't left the side of the cage once!

Meet Turtle (Left) and Ariel (Right)

Turtle likes to visit! :)

Randomness...

1. I'm pooped...

2. Sissy starts tumbling tomorrow! She is VERY excited

3. Joey is getting stronger every day

4. i'm pooped... (Oh, did I say that?)

5. Made a dozen batches of noodles to dry & Freeze.

6. Played Farkle with my 4 year old... yep! that I did! :)

7. Hoping for a restful nights sleep

8... Night world! Sweet dreams!

GOD IS AMAZING!!!

Alright... If you didn't see the post yesterday and video... watch it! The difference is huge! Joey is still weak but doing GREAT!! (Oh, if you got this post by e-mail... Go to my blog to view it)

Joey tries to walk!!!

Ok, this video stinks, and I couldn't get it to flip the other way... but Joey made an attempt at walking today!!! Here it is. He is so weak! But he did it! We are going to be using his wheel chair until his strength is back!

Big man! These have been in the attic for a year... WOW! He's grown!

wrestling with God...

My heart is torn and distracted today. I want to watch service and to be in the moment, but I can't. My heart is heavy for my kids. All morning, God's been asking me to pick up my Bible. In the silence of my dining room, I did. As i type this, I weep because I have realized how big our God is. We are walking through something right now every parent fears. We are waiting on test results that could alter our future forever. We are looking at a possibility of a disease the can destroy life.

I'm torn because those around me don't want to hear these results either. none of us do. We don't want to hear bad news, we want to hear good news. But I am reminded that God works ALL things for the good of those who love Him... no matter what these results are... the question is, do I love God? I remember awhile back, Joey was having a rough time. Couldn't handle church, couldn't handle the crowded class room on Sunday morning. So, I sat with him alone as I often do on Sunday and we stayed in the mommy/baby room. Much like today, I wanted to hear the service, but God chose different. I sat there alone as I heard God say "Do you love me?" With tears and hurt, I said YES GOD. I do. Then He said something that pierced my heart... "If things never get better and I don't heal your kids, will you still love me?" Took me longer to answer... but... I said YES.

Today, that weighs heavy on my heart. I want to say that Satan is attacking right now... i want to say this is all something we can pray away and get up and it will be gone... but my babies were born this way. They were created with a flaw. I say that reading the verse that God has been pleading me to read today....

Psalm 139:13-16

"for you created my inmost being;

you knit me together in my mother's womb.

I praise you because I am fearfully and wonderfully made;

your works are wonderful,

I know that full well.

My frame was not hidden from you when i was made in the secret place.

When I was woven together in the depths of the earth,

your eyes saw my unformed body.

All the days ordained for me were written in your book before one of them came to be.

There is no denying that Father God knew what my kids would face. There is no denying from birth, they have faught. In good days, even in the past year, signs were still there, they still faught... Surgery has caused set backs, exhaustion has caused set backs, life comes and hits. This verse speaks clearly to me today. Am I giving up, NO! I'm not. I believe full well that He has every moment accounted for and I am living in faith that tomorrow is a new day with new miracles. But today, I walk in the fact that there are things there. My children were born with what the world calls special needs. I want to shut down, I want to withdraw... I want to say it isn't true... But, I have to trust... I have to know, GOD KNEW FROM DAY ONE where my kids would be at. How they would be feeling today. I have to trust that when those results come back... God made my babies and they too is crafted into His plan. The choice is... Do I love Him? My answer is YES... the issue is... if the word comes back frightening and we are going to face devestating results... Was it in His plan... YES> so, if it is there... if we face a nuero muscular disease... Will I still serve Him? You better beleive it. Disease... bad days.. none of it changes who God is! None of it changes the outcome of our life... Our days were ordained and written in His book before ONE OF THEM came to be... he knew... He knows... Life isn't changed by the outcome of a test... Life is changed by the answer we give... Do you love Him? So, yes, I love Him... which means, we move forward and we walk out the days ordained for us and we LOVE HIM and we SERVE HIM.

God, My life is yours. Father, My babies are yours! you know the plans! You made them! They are fearfully and WONDERFULLY made! We love you Papa and we chase hard after you! amen.

Thanks for praying!

dad was able to come home with out an admission last night! they got his sugar lowered and under safe control! thanks for the prayers. ~Mindy

Urgent prayer request...

They are taking my dad to the ER tonight. His blood sugar is up. Last check was 340. It simply keeps rising. thanks for the prayers! I'll update when I know something!

Play time...

Joey had play time outside this afternoon. He was having a blast! Sissy was throwing the ball in the air and he would yell "Ball! high!" So sweet. She is being an awesome little helper with helping keep him busy and his mind off of owies! Now if we can just get him upright and standing! upright would thrill me the most... standing... I'll be crying tears like never before!!!!

Verse of my heart today...

1 Corinthians 15:56-58

The sting of death is sin, and the power of sin is the law.

But thanks be to God he gives us the victory through our Lord Jesus Christ.

Therefore, my dear brothers, stand firm.

Let nothing move you.

Always give yourselves fully to the work of the Lord, because you know that your labor in the Lord is not in vein.

He did it!!!!

Joey was able to sit up for a few minutes this evening!!! This was a HUGE accomplishment. It HURT though to say the least. He finally reached crying saying he was hurting. So... been back in bed the rest of the night... the important thing is... HE DID IT!!!

more on the kids...

Well, Mr. Joey saw the playdough this morning. He wanted to play so bad. I got him up and changed him and well, that was it. The pain kicked in so he wasn't able to sit in the chair. Not sure he could have anyways. He has no stability. The back would have been supported but not his sides. He just falls over in any direction and can't pull himself up... So, we solved the problem! Put out a blanky and happy the lil man became as he got the play dough out!! :)

Now, as for sister, to explain what is going on. Yesterday, when she woke up (This is the day after joey's surgery where she was at the hospital the entire day playing and walking.) Jeff said that she couldn't stay awake. She kept falling back to sleep after 10 hours of sleeping. Anyways, once she woke up for the morning, she was very weak. Had trouble getting to the bathroom. When she was trying to sit to eat breakfast, she was swaying and couldn't stay up right. She had zero strength in her arms. They began shaking when she was trying to get food to her mouth and jeff had to put the drink there for her. Jeff would ask her what she was feeling and she'd just say "I'm so tired daddy. I feel tired every where." Jeff loaded her up and brought her to the hospital. she couldn't get to the car so he had to carry her. She fell back to sleep in the car and wasn't able to stay awake. On there way I called Genetics. He walked into the Hospital room literally moments after Jeff and abby did. Gist comes down to, Abby had an energy crash. Dr. Burrow felt that what we are seeing has to do with what they have been looking into... some form of myopathy. Mitocondrial disease causes energy crashes. So, the reality of it is... they are looking deeper now into this disease. My heart is broken at the thought of having to consider it further, but we have to do what is best. The reality is, a four year old shouldn't have an energy crash that bad EVER. So, we'll see what is to come. Dr. burrow said even with having had her tonsils out and all that we'd been through here as of late, the stress on her body was too much and a 4 year old should never ever crash like that. He was able to see her at the extent of what was going on. I'm praying this isn't the case, that it's not mito. I'm praying it's not what they find, but I'm allowing myself to deal with the emotions in hopes not to crack when we get the results no matter what they are.


For those who don't know about this 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

Joey's run of it...

Well, Mr. Joey has not had a good few days! For those of you who do not follow our caring bridge or face book, it's been a long road. Joey did very well during the surgery, however He did not come our of the anestesia easy. It took 5 hours for him to waken. He was unable to keep his O2 levels up and his heart rate was unstable. This was supposd to be a quick in and out procedure with no admission... but we landed ourselves and over night stay. around 3 a.m. they felt Joey was finally stable and doing good. Please pray for Abby. She had a frightening spell while we were there. I will explain that tomorrow as it will take much more detail! Here are some pics...

Joey on the way home... What an amazing lil man he is!!!

After surgery... in PACU. Poor lil man just wouldn't come too.

The surgeon gave Joey some proud patches. Batman is the place they opened his tummy to repair where the gtube was. The baseball is his belly button where they went in to repair his hernia. Spider man, on left thigh is where they did the skin and muscle biospies. He also had an MRI with MRS so... nothing proud to show there! He got the full service that day!

630 this morning... Joey was finally awake and able to grin a bit at us. So sweet!

This was Joey's final goal... sitting up in the bed. he got to go home after this! :) he can not sit right now with out support and hasn't been able to walk yet. So he has a road to go for healing. He has to stay completely resting for a week and then taking life lightly for the week after that! Thanks to all for prayers, e-mails, calls, txts... promise of meals now coming home! We are so grateful!!!!

It's morning!

We are 40 min. away from leaving! Mr. Joey has to be there at 1130 and his procedure begins at 1. Thanks for the prayers and support from every one! For those who may not know what is going on. Joey is have his tummy repaired from a tare where his gtube (abdominal feeding tube) once was. Also, they are doing a muscle and skin biopsy. Joey still has a lot of weakness and fatigue so they are looking for the case. Last, he's having an MRI/MRS of his brain. This will help them to know too what is some of the cause of the weakness. Also, it may tell them why movement is some times challenging for him. We are very anxious about it. part of us doesn't want to know but the other part does so we can help him in any way we can. I have had direct questions of "Is it Mitochondrial Disease?" Yes, that is one thing they are recnsidering. Since all this we have found out that Jeff has MS all over his Family... so we'll see. only God knows and He holds the upper hand of whatever the cause!



Thanks for all the prayers! they mean so much and honestly... we are living on a prayer right now. W e are exhausted and burned out! Thanks! ~Mindy

Scriptures to hold onto...

My mom typed these up for us... thanks mom! I will hold onto these every moment tomorrow!

What time I am afraid, I will trust in thee. Ps. 56:3

The Lord is my light and my salvation; whom shall I fear? the Lord is the strength of my life; of whom shall I be afraid? Ps. 27:1


For God hath not given us the spirit of fear but of power, and of love, and of a sound mind.
2 Timothy 1:7

Be strong and of good courage; be not frightened, neither be dismayed; for the Lord your God is with you wherever you go. Joshua 1:9

When thou passest through the waters, I will be with thee; and through the rivers, they shall not overflow thee. Isa. 43:2

my Peace I leave with you, my peace I give unto you; not as the world giveth, give I unto you. Let not your hearts be troubled, neither let it be afraid. John 14:27

Behold, God is my salvation; I will trust and not be afraid. Isaiah 12:2