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