It's Christmas!!!

Tomorrow, we are having our Homeschool Christmas party with the grandparents! The kids are all excited! They help make setting cards tonight. Tomorrow they will decorate cakes. We have chosen to do individual little cakes for each person because we are wanting to also remember that Christ came during this season individually for each of us! So... they will be hard at work in the morning! :) We are having bread bowels with ham and cheese soup for lunch! Mmm!!!! All going to be a great time! The kids have practiced hard on a little program for them as well! Can't wait! :)

Ho ho ho!!!!

We are off to the Winchester library today for a Christmas party with Santa! We made our little peanut butter sandwiches this morning to share! The kids are REALLY excited! I appreciate all the activities that the Winchester library offers. I am not sure I have ever seen a library do so well with activities for kids1 I love it!!

We did have a tricky spot last night. Miss Abby says to us "So, i didn't tell santa what I want for Christmas, so that means santa won't know what to bring. Does he really bring stuff?" Ug! She's a smart little cookie. So we explained the fun of santa and she said "I'm glad to know the truth!" I don' tknow what to do with her! Stinker butt! Anyways, she is still very excited about Santa and I think a bit releaved that he doesn't come to our house. She's looking forward to giving him a GREAT BIG hug today! :)

Have a great day every one!!!

Fun day...

Well, we have eased up on the books and have focused in on a lot of Christmas activities, learning to cook, etc etc... we are actually ahead of schedule on school work... so this is a perfect time to work on the fun Christmas stuff! The kids have been having a blast with it! We made some surprise gifts tonight to give the grandparents for our homeschooling Christmas "program" this weekend. The kids were ecstatic about it! They crack me up! I love watching them work. Today, we continued our fun with a treat of a little party at the chocolate moose! The kids had a ball! This is their picture above from while we were there. I think those are happy faces!! :) Have a great night every one!

so excited!!!!!

My lil man became a big boy today!!!! He has done it! He acheaved going pee pee in the potty today!!! He was so excited! When he started going his eyes got huge and he yells "I did it! It came out!" He was so proud! We had a big celebration and called every one in the family!!! Way to go little man! Way to go!!!!! Now, we are OFFICIALLY potty training!!

The snow finally came!

Well, it is feeling a bit more like December... FINALLY! The kids were beside themselves when they got up yesterday and seen that it had snowed outside! Abby has been so wanting it to snow. She told me the other night, "It's just not fair. If it's going to be too cold to play outside than we should at least get some snow so we can have something to play in when we do get to go out!" She cracks me up!

The kids are doing really good in school. Abby is getting closer and closer to reading small words every day! I can't believe it! They do things so young these days! Joey is really starting to get into his little preschool activity sheets. He's so funny watching him process and work through it all!

On the 19th, they will be doing a little Christmas program for the grandparents. They are getting VERY excited about it! I can't wait to watch them go at it. :) We will be sure to video it and share!

This week is posing to be busy! We are excited for the holidays! The kids have tumbling on Thursday and then right after have a Christmas party to go to. Sunday, we are hoping to take the kids to the Christmas party at the skating rink in Winchester. Santa is going to be there with a treat for all the kids!! Abby is counting the moments till she gets to go!

Have a great day every one!

Our wee lil tree...

Family picture with the tree.

Carmel investigating the tree coming home...

Unwrapping the tree...

Puttin the angel on...

The proud finished procuct....

wee bit behind...

So, this is from halloween... we are running behind! Ha ha! Couldn't find my cord to my camera. So, now I have my pics on the computer! Abby was sully from Monsters Inc and Joey was a cow. :) They were adorable! Certainly fun to get to be out having a blast and meeting up with some of our neighbors!

got a question...

So, I feel God leading me to start a mothers group in our town. This won't be associated with any church or church function, but instead, just a complete outreach in our community. I have some ideas about what I want it to look like, things I feel God has laid on my heart... but I don't know yet what it really is going to look like...

So... if you are a young mother, or once was a young mother... what would minister to you? What would be helpful to you?

You can post here or e-mail me at mommypfohl@gmail.com

So... there it is... your turn!

Merry Christmas... It's coming!!!!

Well, we went yesterday and got our Christmas tree at Sickels tree farm! The kids had a blast. Abby was jumping up and down as they put the tree in our van! Cracked me up! The kids were so excited to get home and decorate it.

Carmel even found himself excited! He has climbed the tree three times now. I just pray that he doesn't knock it down! I had forgotten what it was to have a cat and a tree in the same house!

Abby is 5...

Well, Miss Abby had a totally awesome birthday! She really enjoyed being with family and having some friends come for her birthday party!

It was so cute, last night, as I was tucking her into bed she says, "Mommy, I need some time to talk." so, I sat down with her to listen. She says, "I have been doing some thinking. I am five now mommy, that makes me pretty old. I think I can go out to play by myself now and I can take bubby with me. you'll have to remind him that i am in charge. He is three and I'm five so that makes me big enough." Cracked me up!!! I didn't know 5 meant you were a grown up adult! hA!

Have a great day every one! Back to routine for us! Thanksgiving and birthday is over! :)

It's birthday time!!!

This is Abby's birthday cake for her 5th birthday. This was a bit comical to be honest! I made the cake with farm fresh eggs. The cake didn't bind like I needed it too! The frosting was falling off and then the cake split. It was to be 3 layers but the first layer split into like 8 different pieces! Not cool! However, this was the finishing product. Not my best but it's totally piped. None of the frosting was spread! So, now I pray that when I get up in the morning... the frosting has set and is ON the cake... not the tray!

Miss Abby really wanted a castle, but with the miss hap's we had... I'm hoping a walk in the clouds for Cinderella and her prince will be enough to bring a smile!

Music man...

Joey is my lil music man! I was folding laundry on the living room floor the other morning and he sang me songs and played as best as he could for me! Such a beautiful sound!!!

Raggid...

Running raggid is my life right now. I tell you, I'm wiped out! But, holding my head high and moving forward thanking God for the family I have!!

So, here is a run down...

Monday, Joey had Speech... he was doing awesome! She works so well with him.
He followed this up with Physical therapy. Man, he was a ham. Last few times he's had real low energy... um he made up for lost work! He was a fire ball hard to catch! ha!

Sis also saw the eye doc! Very exciting news there! She is growing out of her glasses! They took her script down a notch this time!! Yippy!!!

Tuesday: she ordered her glasses! Little pink frames! So cute! They look like little granny glasses but we won't tell her! LOL!

Today... Both kids had their physicals. He felt Joey was doing good but saw the regression in Abby. He sees them every 3-4 mths. just to keep up and check on their growth etc.

Abby had her occupational therapy session today to decide if she's elidgable for therapy. It was a yes hands down. her strength is poor and he said that her clumbsiness comes from not having a real idea of her body control. She is just all over the place. So, much they are going to work on.

Joey had his Therapy with OT today. He did great for her. He was so cute! They are working with getting him to accept different textures in his mouth. He hates pudding. She got just a tad on his tongue. He threw his little arms up and exclaimed "Hey, I like that!" Oh man, we were all laughing so hard! Little stinker!

Jeff is still holding on. his physical abilities have really changed. It's been hard on all of us but the hardest on him I think. We don't know much more than that yet. So please continue to pray for wisdom! Thanks all! ~Mindy

the rest of our appointments...

Well, the kids had their appointment today with an Occupational therapist (OT). It went fairly well.

She had a lot of good ideas and things for us to work with here at home. She had a lot of good input on helping Joey with his hand control.

She said that the majority of the issue is strength. We can do all kinds of things with them but until we get his strength up, the coordination will never come easy.

she Worked with Abby for a good long while today. It was a real eye opener how weak she is. She told us that much of what she does is simply her compensating or covering up her weakness. So... she took those away and pushed her to do things correctly. Broke my heart to realize that she really does have a lot of weakness there and her endurance is little to nothing.

Needless to say, she had the recomendation to start Abby in therapy services here locally. So, we will be.

Thanks for the prayers! hugs to all of you!

Reluctant...

It's been a week since I have written here... I think for one, I have more on my plate than I know how to manage right now... but also, I'm just reluctant to share. I don't think it's because of any specific reason except for... I don't know how to swallow life right now so it's hard to put it in writing extensively.

There is still this part of me that hopes I will wake up tomorrow and realize this isn't life but instead, it simply me living out a bad dream. But, that bad dream is here and not so easy to take right now... so push forward. One DAY at a time. Some times second by second.

Jeff had his testing done Tuesday. Started with a NCS followed by an EMG (first is nerve conduction, second is muscle). This wasn't the most pleasant test, but he survived. The doctor told him he was a super good patient! He had an MRI of his head done, also an EEG (looking for seizures) and finally, blood work. He was pretty wiped out to say the least.

We came straight onto Cincinnati from there. I'm struggling with being exhausted just because of doing all the driving and care, etc., so staying the night Tuesday and Wednesday was our only option with all the running we've been doing.

Sis had a pulmonary appointment today. We have been concerned in seeing a lot of shortness of breath in her. The Doctor spent a lot of time listening, asking questions, etc. The final point of the exam came down to the fact that Abby's shortness of breath is not related to her asthma as we had been lead to believe, but instead, it is an issue of muscle weakness. This was truly disappointing to hear! They are moving forward with a sleep study. She has a history of hypo ventilation. This is something that happens when you can't make the exchange of air and clear out all the stuff when you exhale. She wants to ensure this hasn't worsen as this is also because of weak muscles. She isn't changing the asthma meds until after the study. She did, however increase her allergy med to make sure that is covering our base line. And, is starting Abby on cortisone to treat her eczema.

I spoke with the surgeon today through the dentist office. They are backed up on surgeries. Joey was not specified as an emergency case, so they are putting him on the waiting list. Probably be after the first of the year before anything is done there. OK by me! The longer the better since he had surgery in September.

Tomorrow, we go to see an Occupational therapist at Cincinnati. She is going to be working individually with the kids. This will allow her time to see what they are capable of and what they are lagging behind in. One thing she will be working towards and looking at is to make sure we don't need any adaptive equipment right now. The Physical therapist who worked with us on the wheel chairs really thought this exam would be beneficial. So, we are walking it out.

I'm sorry if this is all overwhelming. This is why I don't want to blog or update in detail. I find it over whelming and seems there is something EVERY day right now. I do thank you for your prayers. Calls, emails and texts are meaning so much right now. I especially am a social person... so I feel like I'm in this lonely little box and those are areas that bless me and keep me moving forward! So, thank you to those who have been in touch!

Night all!

Here I am...

God I sit here broken... take my life and let it be yours... May I be able to live to give you glory... May you be my strength... Show your self strong in me papa! Amen

another round...

Hey All!

Thanks for the continued prayers. I can't remember if I updated, but Joey is going to be having another surgery due to his dental issues. He's going to be admitted after because of anesthesia problems. Life is a blur for me right now so If that is repetative... i'm sorry!

Sissy is having some issues of zoning out on us, occasional confusion, etc. So, she will be seeing Nuero. Genetics is thinking an MRI needs to be done. I will call tomorrow to get the ball rolling.

Jeff saw his nuero today. They are at a loss at this time. They tested Jeff's memory today and found it to be not so good. So much so, The doctor called me in to explain the process of things so that we can be on the same page with medical care. At this point, Jeff's muscle "appeared" normal on exam. This doesn't present any foundation in either direction. At this point, they are going to move forward with ENG which is a nerve/muscle test. This will show them how the muscle reacts. Following that, we will go over for an MRI of his brain. He has been having more frequent migraines so much so to the point they are making him loose his peripheral vision. He has had these since he was in his 20's but have worsened. This will give them a good eye on what's going on neurologically. They are then going to do an EEG. They are concerned about seizures. You can have seizures that no one can see that can cause the memory loss, etc. So, they are taking all into consideration. on top of that, they are doing some blood work. Looking for some deficiencies, etc. After speaking with me about the kids, he began to take this a bit more serious and realized that this isn't something simple. We don't know what it is, but it is more complex than he bargained for. So... we start here and move forward. He said this presents a big challenge but we will get to the bottom of it.

Thank you for those who have been sending encouragement. We are all exhausted and spent right now.

--
~Mindy Pfohl~

Getting ready...

Well, tomorrow is a big day for us in Cincinnati. The kids have three appointments. They start early. So, we have decided to leave today. Jeff has found that driving exhausts him. When we have Early morning appointments, in the past we have literally had to switch off and on to get there with cat naps. I don't do well with mornings because my kids don't sleep well at night. Some times due to pain, some times due to restlessness, and some times do to reasons I have no idea about. So... with all this being said, I'm learning I have to say when I have hit my limit. I can't make the drive safely tomorrow. So, we called up our old faithful $35 a night motel and we are crashing there tonight. It will be late tomorrow when we get home. So, I think this is for the best for every one. Jeff and the kids can rest after the drive there before the long day of appointments. Please pray for us tomorrow! Thanks! ~Mindy

Lil man...

My lil man went to my parents last pampered chef show that they did. My sister was hosting. :) He stoll pappaw's chefs hat and was sporting it well! :) I thought he was adorable! Ha! :) Have a great day every one! ~Mindy

Retry... results of the day...

The last blog entry, I deleted. I want to try again at explaining today. I have had some food so now I'm feeling a bit more intelligent! Ha!

Ok, what is going on...

Nuero explained that we all have one type or another of muscle. Type one burns oxygen. This is what most ofus have. Type two burns glucose. Joey has type one muscles. These muscles are broken down into three functioning parts. Each part is equally dispursed. Another words, they are 1/3 each. For Joseph, his are unequal. They explained it this way. We have white meat and dark meat. White meat is healthy and critical to our activity. Dark meat is unhealthy and burns oxygen off more quickly. Joseph has 70% dark meat and 30% white meat. It should be the other way around. So, for Joseph, walking is for him like running a marathon for us. He is burning oxygen from muscle faster than his body can keep up. So... there is where we are. Hope that makes sense. The last entry DID NOT! LOL! :) Night all.

Another road trip...

We head to Cincinnati tomorrow. Joey has an appointment with Nuerology. Please pray for us. We may be finding out the diagnosis for the kids. I'm a basket case. Not sure I want to know what they are going to say.

Kids had to go to the ped today. Joey has fluid on both ears. Both congested more than ten days. Not bad but enough with their given history, he is treating them with amoxicilian. Our prayer is, that it kicks it! No flu! :) that's very exciting!

Well, night all! Long day ahead tomorrow!

Medical...

Howdy! I'm working on putting some fund raisers together. We are going to need money for travel, medications, medical bills and expenses related to all the above. The kids have overnight stays coming up. Abby two for sure. So... life's getting a bit hairy for us again. It's ok though because God has always brought just enough! :)

We will be doing a sale up town on Nov. 13th for sure. I have had some volunteer donations already. We have lots of cookies, some brownies, noodles, and a cake coming for sure. A friend and I will be making buckeyes & chocolate covered pretzels.

If you would like to donate, please e-mail me at pfohl4@hotmail.com

I have noodles for sale right now. Making them as they are ordered. I have been selling them at $3 a dozen. I also do dumplings! :) So, you name it and it's yours!! Prices can be changed too... I just am trying not to come up short.

Also, if you have fund raising ideas further than this, let me know. I'm not good at this and have little experience... so... HELP ! :) I need someone with a good mind to figure it all out! LOL! Thanks all! Thanks for the prayers and those gathering around us. It's felt good to see who our true friends are and feel that love. Gives us much strength!

When life is too much part #2....

Ok, so I'm not sure what I did last night with my blog entry. I updated on Jeff, but I didn't blog what I intended too. I spose that's a sign my brain is going 100 miles a minute in the wrong directions! ha!

What i intended to say is....

We have both feet totally over whelmed right now. Lots of fear as to what is causing this. Fear of what may be about to happen in our lives. We have so many emotions but at the same time, we have this odd peace... we KNOW that God is still there. We know that he's holding us and carrying us...

I told Jeff that there is a part of me that wants to get angry and say "Why me? Why my family, why my husband." I felt over whelmed before Jeff's illness arose and now I feel totally defeated... but every time those emotions start to arise, the question that God asked me a few months back about loving him even if God doesn't heal my kids arises... I suppose this is where the rubber meets the road. I don't know what is going to go on. I don't know where life is going to take us. But I do know this, If I love Him and I serve Him, It's ALL going to be ok. So... here I stand!

I will close with the scripture God gave me this morning:

Job 11:13-19

"Yet if you devote your heart to him and strecht out your hands to him,

if you put away the sin that is in your hand and allow no evil to dwell in your tent,

then you will lift up your face with out shame;

you will stand firm and without fear.

You will surely forget your trouble,

recalling it only as waters gone by.

Life will be brighter than noonday,

and darkness will become like morning.

You will be secure,

because there is hope;

you will look about you and take your rest in safety.

You will lie down,

with no one to make you afraid,

and many will court your favor."

Thank you God for the promise of hope! We stand in awe of who you are and we say, here is our lives... use them as your will be done!!!!

when life seems like too much...

Well, things continue about the same. Some areas for Jeff are improving, other areas are getting worse. We both have a lot of emotions we are walking through. Jeff is finding that his energy is zapped quickly. For instance, he went to the doc and ate lunch with my parents. He had to leave the resturaunt to go lay down in the van for pain and the fatigue. The kids are feeling the emotions too. They see very clearly that daddy has changed.

Jeff went to see our family doctor today. He agreed that Jeff needed a nuerologist. So, he is putting a very detailed referral in. He said normally he just does the referral and leaves it to the nuero to figure out, but he went further with our situation. He told them the kids history, etc. So, we appreciate that.

They didn't know much what to do for Jeff. They are trying some meds for restless legs. Jeff's legs are jerking involuntarily. we don't know at all that this will work. Kind of a shot in the dark to provide some relief until we can go to the nuero. Also, they put him on an old anti-depressant that has been used to help with nerve pain. Again, shot in the dark but if it helps with the pain, it's well worth it for him. He needs some good sleep. The pain is an issue with waking him in the night.

The kids are doing ok. both having trouble with sinus stuff.

Have a good night all!

Family update....

Hey All! for those who are not caring bridge readers... here's the latest in the Pfohl house hold.

Joey: Joey had therapy yesterday. Speech went fairly well. I think she was excited to see how much Joey is starting to talk more. However, physical therapy was a challenge. Joey had a total melt down during it. The PT & I both felt it was exhaustion. She was so sweet. She called to check on Joey last night and apologize she didn't see the ques. I didn't either. I really just thought he was being stubborn but He fell asleep and then told me later he was just too tired. So, we have decided to move his schedule around. we'll be going three different days now instead of all in one. Joey's congestion is lingering so... please pray for that to go away so it doesn't turn into any thing.

Abby: Missy Lou is doing ok. She's having some emotional issues right now. We think a lot of it is she knows something is up with daddy but she doesn't understand it. Her face is swollen and puffy this morning. We are just keeping an eye on her at this point.

Jeff: Jeff is still having lots of issues right now. his pain is up and regular ibuprofien isn't really helping. He goes to our PCP today to see about getting something that might help especially at night. He's waking from the pain. His legs are also jerking periodically. So... just not sure over all. We are going to be seeing a nuero in Richmond, IN. So, we will see how that goes

Very tired...

Was going to blog tonight... but finding myself at a loss and just really tired. Things remain about the same here today. Jeff's a bit better if he does not push himself to do too much. He pushes, he starts to feel worse. In God's time and God's way, we'll figure this all out... night.

We had Jeff to the ER tonight. About 6 months ago, he started feeling more and more run down. Just very tired. We both just thought it was between ministry at the church and the things going on with the kids that had him more tired. However, it has progressed. he was sick about 3 weeks ago with a really bad cold. Knocked him out for two days. After this, he started feeling as though his body was just heavy and he was exhausted all the time with VERY LITTLE endurance. We thought maybe it was the virus hanging on... but he progressed again. about a week ago, he started having tingling in his legs from his hips to his feet. Today, he started having pain in his thighs. The pain he described is that he feels like he's just run like crazy on a treadmill and pushed his muscles too far. He is fine laying down, but any standing or walking, it progressively gets worse. Also, doing anything makes him sleep. Going to the grocery today wiped him out to the point of needing a long nap.

We spoke with the kids genetics doctor a week ago. It raised concern. This after noon
i spoke with the kids genetic doc over the phone. He wanted a CPK level checked. From what I understand, this will show them the break down of the muscle. The kids has always been normal but they check it to be safe with anything odd. Jeff had normal levels. So, we are fine for now. They are going to get Jeff into a Nuero to ensure that every thing is alright and begin diagnostic testing on him.

Likely, what the kids are dealing with is what jeff has. There has been confirmed Muscular sclerosis in his family now. His mom and sister are both having issues. So, no surprise but not easy to swallow. Jeff does not have insurance that will cover any of this. His health and my own prevent us from having good insurance. So... Please pray that the nuero will take us and do the testing and that we'll be able to cover the expenses.

Your prayers are priceless and we are so thankful!

~Mindy Pfohl~

Daily transformed...

I have been doing a lot of soul searching lately. Our life right now is totally filled with things that are hard to accept. Health issues are the number one problem in our house hold. Watching people you love suffer is so hard. My soul searching stems right now from feeling like I have hit a road block in my walk with God. Life is hard. Life hurts. Life brings joys. Life brings about celebration. Life brings questions... my question right now is what is holding me back from God.

I'm not angry about the kids health. I have come to terms with the fact that God has made them. They are fearfully and wonderfully made and He has their days numbered. He has a plan for them, a future and a hope! His word promises that.... but still... the raw emotions are there. I don't know if feelings ever go away...

I some times bary myself and cover my pain with the food I put in my mouth. I often forget to go to God and instead I go get something that tastes good... I didn't realize it until today... this is my road block. This is what I put before God, therefore separating myself from His love and His presence. A pointless issue that does nothing but turn my own health in a negative direction is what is holding me back. That means I have made my food a god. A false god. A god that hurts me. A god who can't love me... But the God who does love me is there but by choice, I have pushed Him a way by choosing my worthless god... food.

This morning, I was reading in Isaiah. 51:1 says "Listen to me, you who pursue righteousness and who seek the Lord. Look to the rock from which you were cut and the to quarry from which you were hewn:" I was cut from God hiimself. Made in his likeness. all I have to do is look to Him. He is the answer and because I was "cut" from Him, He holds every thing I need. He holds me. I feel as though my strength is gone. I have feel as though I can't put the next foot forward but I can because HE IS my ROCK!!! MINE! He's there... This passage goes on in vs. 3 saying, "...Joy and gladness will be found in her, thanksgiving and the sound of singing." My I find myself in him... May I look to him so that sound of sining and thanksgiving will pour from my heart. May every one see joy and gladness in me.

What's your road block?

How we start our morning....

Well, this is how we start our morning. 5 suringes of meds... two inhalers, a nose spray and vitamins... So, exciting! I always dread morning for this and then I am ready to go when we are all done. We do this again at bedtime and then take a few periodically through the day... so... we belly up to the morning meds each day...

Painting the rooms...

Well, we have started painting. The kids are ecstatic!!! Miss Abby has wanted a pink room since we left Muncie three years ago. We have wanted to give her that... but we've been renters... now we can give her that. I was going to go with a very pale pink... more like a pastel. However, she wanted a bright vibrant color. I started to say no. Then I started thinking about things and realized, she doesn't have a lot of control and say in what she gets to do. So, I decided the decision was hers... Daddy is putting it on the wall. I figure in a year, when she's sick of it, a can of primer and a different color isn't too much for making her happy right now... so... it has begun. The pink walls are arriving her little face has been lit up all day!

As for me... my body aches! I've been working hard to get ready for winter and settle in a little deeper here at home. So... I rearranged bub's room first. His room is on the wall that faces the open field behind our house. That means that his wall gets a bit chilly. We moved his bed. Cleaned up toys, organized his closet. He has a huge closet so the wheel chairs will fit in there nicely now and can come out of the van for when we aren't on a long trip. Yippee!! I love order! So very much love order!

Abby's Test results...

The results are in! Abby's Halter monitor test results came back normal. Her heart rate really does get up there, however, it does get up there. So, we just call if there are lots of complaints from her... other wise, she was within safe limits.

Morning!

Hey all! I can't believe Monday has arrived! We were supposed to go to Therapy today, however Sis woke up with a slight fever and congestion. Joey has the poo's so... home bound we are AGAIN! I am getting to know my house all to well these days!

I wanted to let every one know that I'm not going to keep up the home school blog. I'm struggling to keep this one up. So, I'll just incorporate those updates here occasionally. I'm not an exciting person for home school updates... so, an occasional here will be good! :)

Well, miss Abby was my work out buddy this morning. I've been on weight watchers three weeks now. So, I started working out today with a video. The kids both were right there with me. They were so cute trying to do the moves! Cracked me up! Made the work out so much more fun!

Hope all have a fabulous Monday! We are in until mommy sneaks away tonight. I have my weight watchers meeting with my mom. So... wish me luck at the weigh in. Not feeling so confident!!!

If you want to understand the kids... here it is...

Alrighty folks! I have had lots of requests for more information about what is going on with the kids... So, here it is... If you have more questions about the kids, always feel free to ask. We do NOT mind sharing one bit and would rather you ask then wonder. :)

The kids are seeing Genetics. Genetics have told us that the kids have some form of a muscular or mitochoondrial disease(to understand mito go to www.umdf.org ). Over the last year, they really thought that the mito was ruled out. However, the kids are having energy crashes. This is where they get very very weak. They struggle with exhaustion to the point of some times even sleeping the day away. This can even include their muscles being "floppy". That can show up in them struggling to do things completely as they normally would to just being accident prone more. Can cause asthma onset to even choking on foods... You don't realize what takes muscle until your muscle gives out on you at times.

Considering all this, they have opted for us to start using the wheel chairs again. This is NOT for them to use every day or just to go to the store, etc. This is for them to use for big days where there is a lot more walking, standing etc. Places like the mall, the zoo, museum, etc. What we are finding is that when we go to places like this, the kids struggle with energy crashes for 2-3 days after words. when we use the chairs, there are no set backs. It helps to preserve that energy.

As far as health goes, they are holding up well. We are more cautious right now with the flu going around. Any nuero muscular disease is going to cause a person to struggle with getting over things. So... just being a bit more cautious.

Nuerology is following the kids and working in hand with genetics looking to see what is going on. They have done an MRI on Joey. We will know more about that the 30th when we see this doc... As of now, our understanding is it didn't look too bad.

As far has cardiology goes, the kids will be monitored yearly with and echo and an EKG to enusre their heart is doing well. The heart is a muscle and can be affected. As of now, they are both strong and doing great with their hearts.

Pulmonary is coverieng both kids for asthma and breathing issues. Joey's sleep test and CT scans have all showed he is doing well. They are going to start doing sleep study's at least yearly. This is going to be done in both kids as Abby starts seeing pulmonary in November. They are doing the studys because often muscle weakness will affect breathing and that's gong to happen at night when they are their most tired. Abby will be having a study in December more than likely. They are considering allergy testing on her as well to see if she needs monthly shots to control her allergies.

Joey will begin seeing the dental clinic in cincinnati. Apparently his teeth are abnormally decaying. so we will begin to fnd out more about that on the 2nd of November.

As of right now, these are the main issues. We are going to Cincinnati several times a month right now and we are going to therapy 2 times a week.

Ok... so there is a start of a look into our lives.

we are going to be needing to do some more fund raising for over night stays coming up with Abby. So, if you are interested in helping or donating funds/stuff to sell... let me know! Thanks!

~Mindy Pfohl~
pfohl4@hotmail.com

Pasta and more pasta...

Abby and I tried our hand at making home made pasta! It worked!!! Jeff is going to make us a pasta rack so that we can hang the noodles next time. So... we have mini spaghettis this time! Less cutting I have to do to feed the kids when they are kicked! ha!

glimpses of the last few days...

My mom and dad started there official pampered chef business today with a show at my house. still looking for orders to finalize my show... so if you need something... let me know!


The kid made their pumpkins today. We talked about how when we ask Jesus in our heart, much like this pumpkin, he cleans our yuckies out, puts a smile on our face and his light within us to shine to the world.

Checking out the yucky inside.

Daddy trying to remain amused!

Tumbling class... Doint their bridges

Sister in the dark pink on the left end of the mat.

Tumbling...

Well, the kids are loving it! They are both in tumbling class now on Thursdays! It's so cute to watch them both! I love it! My camera on my old phone stinks as youc an tell by the many pictures on here! BUT my new phone is here so I'm hoping to get some cute pics this next week to show you! Joey is so funny. The teacher came out last week and said "I've never had a three year old do everything you ask." He is one sweet little boy! we are proud of him. he uses more manners then any kid I know! He must have got that from dad! Ha ha!!! Well, more later my friends! :)

Will you worship....

Driving home today. I realized that we had another hard blow today. Joey is breaking his teeth a lot. Took him in AGAIN for more repairs. Dentist is to the end of what he can do with out going into things like sedating etc. So, they said that Joey is going to have to see a Cincinnati dentist. They said that he's having rapid deteriation in his teeth. So... to another doc we do go!

So, on the way home, I was feeling hurt, angry, confused. Why in the world do we have to have more. Why can't just one area of medical care be normal and easy. So, I had my pitty party... Until...

The song "Come, now is the Time to worship" came on. I started to remember that God had asked me if i would love him and serve Him no matter the out come. At this point, tears are flooding and I realize... I'm not loving Him. I'm angry and I'm questioning... so I started saying words of praise as the song played Come, now is the time to worship. come just as you are before your God.

So, again today, here I am broken and coming to worship. He is my Great I am! My all in all! My every thing... He's my strength when I am weak... he is my rock!

So... Have you worshipped him today?

Update on road trip....

Well, our trip to Cincinnati went good. We arrived an hour early! It was so hard to entertain the kids. I forgot that the hospital has gone on precaution mode... so ALL the toys are gone right now! Even in the resource room play area.... I didn't take toys!!! OH NO! Do you know how hard it is to keep a 3 & 4 yr old busy with no toys?? I was thankful for my sister! She went along and was so helpful!!!!

We started out at the wheel chair clinic area. They had scheduled us a slot just to make some minor adjustments to the chairs. However, getting in there, they realized that the chairs needed much more. Sissy's were more minor alterations, but Joey's are major. His seat is too long causing him not to be able to reach the plates where his feet are too rest. They did this some where other than cinci, explaining to us that this was because he was so small. Well, the guy at cinci looked up and said "Please please tell me you did not get that chair here." He was relieved to know it wasn't them who had done it because the chair was made totally wrong for Joey's needs. So... this lead to realizing that his repairs were going to be more extensive. So, we have a spot reserved on the 2Nd of Nov. to take the chairs back and to have them properly redone. We'll be there for like 3 hrs. they said... so taking PLENTY OF toys and videos then!

Next was pulmonary. This appointment went well also. She was very pleased at Joey's asthma control. she said that he's doing great. They are leaving meds as is. She is afraid if she lowers them any more we will start seeing asthmatic issues again. Also, because of the possibility of what is going on with the Mitochondrial/muscle disease (whatever it may be) they are going to need to start watching him for sleep issues at night. She said that muscle weakness affects our breathing and most often shows up at night... so... not cool! We'll be doing sleep studies at least yearly and sooner if we deam necessary by symptoms at home.

She is going to begin seeing sissy as well. She said that with all her allergies and her likely disorder as well, she really needs to be in. They said that hearing her story, they'll do allergy testing on her first off. If we find allergens that are removable from her life, great but if not... they'll begging periodic allergy shots to take down on the amount of meds she has to take to control her allergies/asthma etc. So... I'll be making an appointment for her soon.

OK... enough... I'm sure you are feeling overwhelmed reading our details! I know I get overwhelmed sharing them some days!

Have a great day all! ~Mindy

Road trip....

Well, we are headed for Cincinnati today! The kids are both being seen in the wheel chair clinic. This is not an appointment either of us are excited about. We have found that when we go places that require a lot of walking or standing, the kids have energy crashes for 2-3 days straight where they are tired, they hurt or just don't want to move at all. So... we talked with Genetics and they felt it necessary to refit the kids for the wheel chairs we have that we got when we were at Riley. This is hard for us to swallow... feels kind of like we are going backwards. We have taken some steps backwards in some areas.

Jeff and I are really struggling this time. Lots of tears, lots of pleas that God would turn this around. Having had a good year and truly believing that every thing was fine now... it makes it harder on us as parents to cope with where we are. I find myself very broken inside right now. I know that God is COMPLETELY IN charge... I know that He's more than capable to change the out come of whatever the diagnosis is going to be... but getting that from my head to my heart is a real struggle at times.

We have great days where we know that we know that this is nothing in the face of God... then we have days like today where we just want to sit and cry and ask why. I don't know why... but I do know that God made my babies perfectly in his eyes! He knew there every moment before they were born so we will move forward and trust and then allow God to hold us and carry us when the strength is not there....

Joey also sees pulmonary today. We are probably going to ask if they will see Abby. Her allergies are just getting the best of her. She's back on eye drops because she's getting rashes around her eyes from itching so much. So... I'm going to try to get her in there. They have done so well with getting every thing from Joey under control. so... we'll see what happens!

Also, the kids have started on some suppliments. We are torn how we feel... we are starting to see positive changes. Our reason for being torn in our feelings is that these meds are often found to be a positive affect in mitochondrial disease. So... it's hard for us with not knowing what we have but seeing the positive out come. We are relieved though for something that is helping. I'm starting to see them rest better, I'm starting to see them complain of the pain a bit less... and having a bit more endurance. Small steps in each of those areas but they are steps in the right direction.

Thank you all for your prayers. We will know probably by the 30Th at the very latest what our diagnosis is. It is just that... a diagnosis... not a life description... So... we'll see what they have to say. Hugs to all! ~Mindy

My baby gave to locks of love!

Today, we went to see Tracy for a hair cut... We planned on Shortening up. When Abby showed Tracy where she wanted it, Tracy asked me if we considered locks of love. Abby wanted to know right away what that meant. So, we explained it and she was so sweet! She jumped right on that band wagon and was giving whatever was needed! I'm SO PROUD!!!!

Getting washed up for the cut...

Rubber band and ready...

Proudly holding her lock of hair.

Shaping it up...

Behind after the cut...

From the front and ever so proud!!! good job stinky girl! Good job! :)

Meet Carmel...

We celebrated buying our house by welcoming a new familiy member! This is Carmel. He is such a mild tempered kitty! He lets the kids carry him every where and never makes a fuss!

It is a good thing...

When I am weak... He is made strong!

Tomorrow is the day....

Well, we are excited! Tomorrow, we will be closing on the house! It will be a done deal! Abby wants to paint her room the minute it's sealed! She's so funny! She wants her room to be pink... I think we may just be able to work that out! :)

Things are going good here. We have had a more mild week. No trips to Cincinnati. Just our routine therapies, etc.

We have had lots of talks with the doc this week. Genetics has referred us to the wheel chair clinic. They have decided that the kids will need these on days with lots of walking or lots of standing. This will help with their endurance. We took the kids to the zoo and had the realization that when we used the chairs, they were able to stay the whole time and be a kid. They got up to play when other kids were and then sat to walk between exhibits. After seeing this, Jeff and I just realized how tired they really do get. Not a comforting thought, but we are thankful to have something to help them on days like this.

We are waiting word on Cardiology right now. We aren't sure the Halter monitor results yet. I must say that I'm hoping they caught something so we can know what's going on when Abby feels this way.

Whelp... that's about all... We will be watching service from here this morning! Join us if you have time at 1045. www.farmlandfriends.org

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!!!!