Snow's a comin'! Snow's a comin'!!!!

Ok, we went to Wal-mart tonight to get groceries... EVERY BODY AND THERE BROTHER WAS THERE!!! Guess every one had the same idea. It was so busy. We got our stuff and are home before it hit. I am dreading this storm. Joey has two appointments in Indy tomorrow. The first is to get his SMO's (Splints for his stability of ankles) and the second is for an over night sleep study... umm... I'm not sure by what the weather man is saying that we are going to make it. I guess we'll wait and see what the morning brings. It's been known to fool us a time or two! Joey's had a very rough day today with a lot of drastic ups and downs. Miss Abby... I'd say is doing great today. Hope you stay warm tonight and get your boots out for tomorrow... may need your ice skates too!

Do you ever question???

Do you ever find yourself in a place of questioning why? Here lately, I have been doing a lot of soul searching and asking God where my heart should be at this point in life. When Jeff and I got married, we knew beyond a shadow of a doubt that God had called us to ministry. We met doing ministry together, we grew to know each other through ministry, we enjoyed ministry together after marriage and now, life looks much different. My ministry is what I do every day for my kids to keep them healthy and alive and Jeff's ministry is in what he does at the church and in our community every day. Not at all what we thought life would always look like. We both long to minister together again and often find ourselves greived because of where life has taken us. However, we do not regret having our babies! We love them with every thing in us and this journey is well worth its price! Some days though, I especially struggle at wondering why life is the way it is. Why I can't be at church all the time, why my kids have to suffer the way they do, why every thing falls where it does... When you look at the prognosis from a medical stand point for my children, life is pretty hopeless and I've come to realize that I have been wrestling with that hopelessness. It's so easy to fall prey to what is around you instead of looking at what is unseen. I dont' now why God has allowed this season in life, but I'm sure one day we'll know. I have been searching for something to bring comfort to my heart. And God took me to Ecclesiastes 3:4 "A time to weep, and a time to laugh; A time to mourn, and a time to dance." There is a season for absolutely EVERY THING in life. Some times we weep and other times we laugh. We have come through a time of mourning because things were going backwards and not looking to good... but now, we are able to "dance" because the kids are seeing some "ups" right now. Joey is gainging muscle mass... medically impossible... Abby's eyes are strengthening... another impossiblity... Joey is about to have a feeding study because he appears to be stregnthening in his swallowing abilites... another impossiblity, Abby was just discharged from feeding therapy because she is so improved... another impossiblity... things like that make me truly realize that God has his hand in every thing. If God meant this for his glory (which I'm sure he did because he does with every thing... it just all falls in the way we handle it) then so be it... I will walk it out! I have come to learn, it really doesn't matter what the doctors say, it all lies in what God says as to what happens in life. So, I stand today believing, there is a season for everything and I will try to walk out each season with joy knowing my God is in control!

Relaxation...

I tell you, I very much wish I could figure out a way to make my days like this picture... sacked out with out a care in the world. I haven't managed that unfortunately. Most of the time, I have a minimum of three days a week on the go because of rehab. Then you add to that, typically at least one day a week to Riley for some form of medical care. Seems there is always something. Today, I am wiped out. We had growth group tonight. The kids were wiped out from rehab and Abby has shown in her behaviour all day she is a bit on over whelm, so we had a night at home. Kind of nice. The kids and I played in their room through out most of it. The tickle monster was on the loose! I love to hear those giggles. So, tomorrow, I start another day of running. We have physical therapy. I'm so tired and ready for Saturday... but three more days of running! Hope you all have a wonderful night!

Oh, just in case... I know some of you do not get update e-mails... if you'd like to be added... e-mail me at pfohl4@hotmail.com Also, if any of you are interested in road trips to Riley, our appointments are becoming more demanding and I could always use a hand on the trips! Let me know if you'd be interested in going on one with us! Night all!

Make video montages at www.OneTrueMedia.com

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Just this side of Looney...

Thought I'd share some cute pictures from the museum yesterday. It was so much fun to have that time together! The kids loved it... Well, today is Saturday and the house has LITERALLY felt like it was just this side of looney today! We have certainly enjoyed ourselves but it has taken it's toll on every one equally I believe. Joey has been fussy and irritable most of today and just needing naps left and Right... miss Abby has been on the other side of being so tired she isn't in control of herself and is bouncing off the walls intern making her MORE tired. Me, well... I'm about a combination of the two and well... Jeff... He never gets to imbalanced... he's pretty level! =) good thing for Jeff, this house would be rocked way to much if we didn't have some one who could stay some what in balance. We have not ventured out yet today. my plan was to at least go grocery shopping... didn't happen. The kids have just been moody and then I fell asleep. ha! Oh well... another day I suppose!

Tomorrow is the benefit for the Joseph fund at Arby's in Winchester. It is from 12-3 p.m. again. We are excited about being there again. We hope to see many of you there! It has been so fun to get to go each week and see all the different folks who show up. So... looking forward to it yet again!

Two of the greatest kiddos!

Well, here we see Joey trying on his Eli's angels hat. (wonderful wonderful program for children suffering from a mitochondrial or metabolic disease http://www.elisangels.org/ ) Then miss Abby is showing one of her first faces she made. He looks a bit frowny though! We have worked on turning that frown upside down. =) It's been very nice having this vacation time with daddy. It's been the first time in almost 2 years we have had family time uninterrupted by medical issues. The kids have had their bumps and it's been hard to watch, but it's been so nice to be together. They are so happy to have daddy home and we have had NO appointments this week. Rehab was off the schedule and so was it all! That's been mommy's vacation. Medical never stops as there are feeds to worry about, fluids to run, meds to get ready, etc etc... but no doctors or therapists (Even though we love them all, nice for a break from the running.) Thanks for checking in on us. Have a great night!

Daddy's vacation...

Well, here it is in the flesh! We have begun daddy's vacation.

So, here is Prince Joey! Isn't he charming???

Make way for Princess Abby! We had a delightful lunch at Burger King!!! Mmm... greasy!













This is the two story carousel the kids almost had a heart attack over when they saw it! Whew! I didn't think we were going to make it to enjoy the ride!























Miss Abby delightfully enjoying her pony ride on the carousel!











Mr. Joseph, undecided whether he likes the ride or not... He grinned and clapped, but then decided he wasn't sure after all...









Enjoying the beautiful fountain at the Fortwayne mall. The kids thought it was AWESOME!






The morning after the mall... whew... we are so tired!

thankfulness...

I honestly think I'm too tired to blog tonight, but I am going to do it anyways... do you ever feel like every part of your body weighs like 10 times more than what it should just cause you are so tired? I'M SO THERE! My mom's surgery went well today and I'm so thankful. She is out of it still and they said would be all night. They are keeping her very medicated right now. She was talking about rabbits and kittens at one point... we never really figured it out... but gave us a chuckle anyways. Thank you to every one who prayed... they are 99% sure they got all of the cancer. We'll know for sure in about 2 weeks, but sounds positive. Ok, taking my droopy eyes to bed. night.

Thanks so much!

I want to say thank you AGAIN to every one who came to be a part of Joey's benefit lunch! It was awesome! THANK YOU FROM THE BOTTOM OF OUR HEARTS!!!

A new morning....

Don't you love when you get up in the morning and your children are smiling and ready to go? Mine usually are not very chipper in the morning, however, they were today! They both slept great for a change last night and were so excited to be up this morning! smiles every where!!!! It was great. Now, lets pray it sticks through the day. I'm looking forward today with the benefit. The kids don't go to church right now because of all the flu and colds... we are taking a heightened risk with this, but praying that God will protect us. Most every one that came last week knew we couldnt' be around sickness, so they were able to keep the distance if not feeling as well. It was just wonderful to visit and see every one. I get VERY lonely here most days when it is only doctors and therapists that I see on a regular basis. So, it's good to get out and feel like I have gotten to see every one. Now I just hope it is warm enough. We have warmed a whole degree in the last hour! Ha! We need to be up up up in temp for it to be safe. Layers, coats and blankies!!!! The kids have trouble regulating their temps. It's hard. Any time we take the kids swimming (abby is the worst) they turn purple... Abby usually turns purple every where, Joey just usually the lips... and that's after 5 minutes... so you can imagine what bitter cold weather does to their little bodies. We'll see what happens!

A few things on our plate...

Jeff's mom started chemo this week. She was fine the day of and day after, but the last two days, it has hit her so badly that she has been unable to work. The nausea is getting the best of her. She is very tired and weak at this point.

My mom goes in for surgery on Tuesday. As you can imagine, she's very nervous. Please pray for God's hand and guidance!

Mike & Jenny (That's Jeff's brother and sister-n-law) really need your prayers. Jenny's mom passed away at 5 a.m. today of liver failure. Most of the family was able to be with her during her last few hours and then she peacefully passed in her sleep. Plans will not be made until Monday to allow those from out of town to make arrangements and get here.

Good news... my brother, mike and his wife Rena are moving back today! yeah!!!!

Don't forget, Sunday (tomorrow) is another opportunity to eat at the Winchester Arby's to benefit the Joseph fund! Thanks to all who came last time. As long as it isn't too severely cold, the kids and I will try to make it. Abby has a tendency to turn purple in this weather! Thanks for all of your prayers and kind words.

Hope every one has a great weekend.

A PERFECT END....

today has been REALLY long. I tell you, Riley days can take turns for the good or turns for the bad... today... was one of the bad days... do this test, run here, get this xray, do this test... whew! Exhaustion. We got some good news and some not as encouraging... ( www.caringbridge.org/visit/abigailpfohl ) but nothing unmanageable right now... however, I thought I'd share this video with you. Made a long day end on a good note...TICKLE TIME!

is it summer time yet???

OK, I'm so tired of this cold weather. It is hard especially with the kids having an inability to regulate their body temps... I am just so READY for summer to come!!!! No kidding. OK, so maybe not summer cause then we are all too hot... can we just have spring year round? Warm days cool nights... that'd work for me. Enough I could open the window through the day and close them by night... aaahhhh... if only I could have all of my desires! =) The kids are getting antsy to be outside again. Joey has learned the sign for outside and well, he's practicing it OVER AND OVER. =) soon my dear Joey! Soon!!!!

Life passes quickly...

I just uploaded my old camera card to my computer for development and well... I can't believe how much my kids have grown up! These were pictures taken not even a year ago! My goodness! Such a difference. I'm so excited to see them growing and the new accomplishments they have every day, but at the same time... I'm super sad! My babies are growing up entirely too fast!

A bit of Q&A...

Ok, I usually don't get a whole lot of commenters on here... I have quiet blog readers I suppose you'd say. So, here is your opportunity. I don't have much thoughts tonight... so do you have a question? Could be about the kids or their disease... could be about me... could be about me and Jeff... could be about Jeff... =) Anything... hit me with it! Waiting to see how this goes! =) Night all.

A proud mommy!!!!

Well, today, we have hit a HUGE mile stone. Abby did her ABC's very little help today! I was so excited I couldn't stand myself! So, YEAH FOR ABBY!!!!!!! I just don't even know where to begin I'm so stinking excited!!! So, high five miss Abby!!!!

So, on a more humorous note... Cari and I have been working out together now. Well, I wooped her today! She had to ask me to change the tape... so cracking me up! Sorry Cari! You can do it! On the other hand, I think it is very exciting that we are doing this. Over weight or not, health and fitness is so important. So, I'm excited. So, hats off to the two of us as we strive for different yet similar goals!

Arby's benefit...

Today was just awesome! Today was the benefit for Joseph at Arby's in Wiinchester! We had so much fun being there. I was so AMAZED when I seen the line of people coming in. You know, it will be exciting to see how much money comes in at the end of the three Sundays, but what grabbed me... was HOW MANY PEOPLE!!! Thank you to every one of you for loving us so much and loving our kids. Awesome thanks to Arbys! Night all!

Benefit lunch...

Here it is!!!! Late notice, but hey... it's a notice! =) Tomorrow begins the benefit lunch at Arby's for mister Joseph! This will benefit both kiddos, but they are doing it under Joey's name as many are so familiar with his story I suppose. So, from 12-3 p.m. for the next three sundays, you can eat at the Winchester, IN Arby's and proceeds will go towards increasing the Joseph fund... some come in hungry! =) Thanks in advance to all who are planning to participate! We had no idea this was going to happen. So, thank you to Arby's and all who have been involved in making this happen!

New life...

Well, we have officially returned home from Riley. Life is back on the ground and running... and so am I. I tell you, with all that is being thrown at us right now, health is a major concern. The threat of possible mito, the cancer around us, being over weight.... I have lost weight, but I haven't jumped in like I used to. I have been so tired here recently, but the only way to over come is to do it. So, this week, I'm back on a steady healthy diet... feeling pretty good about it... and today, I started working out. I had a bit more gusto with it today as my friend Cari is joining me three times a week at 8 a.m. in my living room to go for it. So, today, we hit the ball and well, speaking for myself.... I'M STINKING OUT OF SHAPE!!! Every muscle in my body hurts. I wasn't doing bad until we started the Abs and then well, I suddenly remembered where the sight of my c-sections is because I could FEEL it... so my abs have a ways to go!!! My babies have done those muscles in!!!! =) Oh well. I'm excited. I might be stiff or sore tomorrow... but today, I feel great! New energy and excited that we are on this road! So, here it goes!!!! We'll see how I do!

Leaving for Riley...

Joey has worsened in how he is feeling. We are packing now to leave for Riley. I will not be updating my blog while we are gone because I don't get to spend that much time on the computer there. For updates, please go to www.caringbridge.org/visit/josephpfohl and for Abby, www.caringbridge.org/visit/abigailpfohl That will be where I am posting my updates. Thank you for your prayers and as soon as we are back home, I'll be back to blogging...

For lack of what to say...

Well, tonight, I'm speechless. I'm really struggling today. I have good days and bad days with dealing with my emtoins about the kids, and about both of our mom's now... today has been a bad day. One of those days I wish I could take the hurt away from every one. Abby has been having physical pain today ( www.caringbridge.org/visit/abigailpfohl ) and Joey is sick and really not weathering it as well as we would hope ( www.caringbridge.org/visit/josephpfohl ) I try so hard to keep them healthy and then I feel this overwhelm when they get sick. What will the get set back in? What are they going to loose that they have worked so hard to obtain? What are they going to face to get through this one? I know... many of you are probably thinking, where is the faith? I do have days it is very tiny and hard to see! Tomorrow will be better. Thank you to all of you who pray. Hope you enjoy these pics of the kids. They made me smile! Night all!

So, this picture is how I found bubby in his room the other morning. Yep, he had fallen out of his bed, he has his head under his toy and his legs under his bed... by the looks of it, he had some fun playing in the night as well as therea re toys out!

This is the girl who keeps me smiling. She always has something up her sleeve. I believe this was Christmas at mamaw and papaw's just before opening presents! Whew! So exciting!

This, well, this is my son who discovered how to open the dishwasher. We weren't sure if he was trying to do more dishes, or wash himself! Hmm... Any thoughts???

Day of many blessings...

Today was great! We had our 5 appointments from 830 this morning and ending at 230 this afternoon. 3 at Riley and 2 local. Me and the kids were tuckered! We got home and Carolyn Oren showed up with dinner! So wonderful! T hank you so much! It tasted awesome! I was so tired that I nearly cried when I seen all the delicious food! Then the Lott's and Jeff and I had the opportunity to go over to the Christian ministries and serve tonight. I was so tired I didn't want to go, but I never get the chance to minister with my husband... so I mustered the strength and went. My sister was gracious to watch the kids. They loved it and MOMMY needed it!!!!! I really enjoyed going there. It was heart breaking to see that there were so many homeless, but so wonderful to see there was wonderful Christian ministry making a way to help. The guys enjoyed the food so much (good job Cari!!!!) Then we ended up at Star buck's for a drink to warm our cold bones!!! =) IT was a lot of fun. Oh, and Dwayne and Jeff had their chance at Victory in Euchre tonight... so the poor wives were left defeated! Next came home... when we got here... the kids were so excited they were dancing at the door! I never had so many hugs and smiles in my life. It was a good feeling. As we were tucking the kids into bed, the cherry on my day arrived on the door step. There came a winter coat! So, THANK YOU GUYS!!! I will no longer shiver in the snow!!! =) So, I go to bed with a warm body, a smile on my face and all kinds of love in my heart! Good feeling!

Little red fish...

Abby has been begging to have some fish... so we finally broke down. W e have a little one gallon tank. We took the kids to Pet Smart to get a fish. She was set on a red fish. Well, she found one... wouldn't you know, they are social fish. So, we didn't get one little red fish, we got three. Well, we said good bye to two of them this morning. We explained to Abby that they had died. She smiles and says, "That's ok, they'll get eyes and come back again." I hugged her and said that when something dies, they are gone forever. They went to heaven. So, she sat starring at the fish a moment and then looks up again smiling and says "It's ok mommy. You can just buy new ones. Bye fishy!" So, my daughter had her first lesson in the death of fishy and well... I think she faired it well. We were very careful with the words we used. Abby is HYPER SENSITIVE to words and relates them correctly to other things in life. My first temptation was to say it got sick, but since that is something that often happens in this house... I NEVER EVER want to plant sickness and death together in her mind. She has enough to face... no fearing that today! So, we just talked about how they die fast and there was nothing we could do. So, today, we say good bye to two of three little red fish... since they are social... I'm guessing we'll salute a 3rd as we flush the potty tomorrow. So sad! Poor fishy!

My little musicians bring so much joy!

Hello all! Some of you frequently visit the caring bridge sights, but others of you don't... I thought I'd briefly share my thoughts that I put on Joey's CB page. I pray for all of you that you have a wonderful New Year and may we all join together in focusing on the good and the joys that God has given us in our lives! Hugs to all!

I wanted to just share some thoughts. Many of you who read this have walked through so much with your own family members, illness, terminal diagnosis, death and other things in between. I just have been reflecting today just about how awesome God is. Some days, it is so hard not to focus on the most fearful word of mito... terminal. It's like I want to dread the future, but some where in there... God always gives me that ability to focus on today. Over the last year, the kids both have gone through things I NEVER EVER want to face or have them face again, but they always come out smiling. Looking back, I remember those painful things, but if you ask me what comes to my mind first when you say 2007, I think of the giggles, the smiles, the laughter, the tickles, the tumbles, the playing, all the joys pop into my mind. I don't think I will ever forget one smile or one laugh. It is all there! It's in my heart! It's present! Some one once said to me "For all the kids go through, I think they are the happiest children that we have ever seen." I think God gave that joy to them to get them through each day... to help them to fight... to help mommy and daddy to fight. In the end, they always rise up with a smile. So, today, when you are struggling... think about the smiles and all the good memories that brought about that smile. Happy New year all! Thank God He loves us each enough to give us wonderful smiles and the joy of laughter!!!

Christmas fun!

Well, I thought you may enjoy a good video of the kids having fun at Christmas. Who would have thought that two balloons with rubber bands could be so fun!