Still at Riley.

Joey was admitted to Riley Friday night. He will be staying until they see much improvement. He was not doing well this a.m. He will continue on fluids for now. Please pray for protection for jeff. he's not able to be here the whole weekend and will be driving back and forth. More updates as time allows!

Packing our bags....

Joey's diarrhea has worsened in severity. We are leaving for Riley right now. I'm sure that he will be admitted. This is the worst we have ever seen it. His output has gone beyond me being able to keep up with the input even using his gtube. It will require IV fluids to kick this one. We'll do our best to keep every one updated. Thank you.

Nothing left by laughter...

Ok, I just blogged about how tired I am and well... our little guy just makes us chuckle at the end of the day. I decided to Bolous some fluids through is feeding tube... well... I did a boo boo... when bolousing fluids, you have a large syringe attatched to the feeding tube. This syringe acts as a funnel and there is no plunger in it... so when you pull it out... fluids will run if they are still in the syringe... well... I DID IT! I PULLED IT OUT! Joey was asleep and when this some what cool water hit his leg... he jumps... I held my breath waiting for him to start wailing and well... he doesn't... instead... he draws his legs up and starts belly laughing... Oh man! I lost it. I couldn't finish for laughing so hard! See, at the end of the day... I felt consumed and God gave us laughter! There is always something to bring joy in every day! =)

Consuming...

Today has just felt all consuming. I felt like I couldn't be every where I needed to be and be able to get things completely done. Joey is dealing with his chronic diarrhea again. This happens as a result to his mitochondrial disease. Sometimes, the muscles in his intestines don't function properly, thus resulting in our experiences today. We have to pull every thing out of his diet when this happens except Crystal light which acts to keep him hydrated. We have been home 13 weeks now from the hospital and well, if we get admitted, this is typically why. He has so much coming out that he just can't keep up with what he needs to take in. Our prayer is this will pass quickly. He's battled this in the past any where from just 2-3 days clear up to 27 days. My heart just breaks for him because it makes his little tummy just ache. Abby thankfully is not sick right now for the two to pass it between themselves. She's had a rough day of fatigue, however. She did well at the church this a.m. during our mom's group, but by the time we left, she was so exhausted, she forgot what NO meant. She slept a better part of the afternoon. Right now, I just feel exhausted. Between trying to keep Joey healthy today, Abby able to either nap or rest and complete all of our appointments... I WANT TO COLLAPSE!!! Tomorrow... we will take Joey to the doc to make sure fluids are holding OK and then that is it. =) I will sit in my chair and REST. =)

Aleyna... this is for you...

Aleyna has been an awesome support to our family. She started out as Joey's Ketogenic dietitian but is now a treasured friend who we love tons! Aleyna... you wanted to hear Abby say your name... Here you go girl! You may have moved... but you can count on the fact this Crazy Pfohl family will love you ALWAYS!!!

many changes...

In light of many things in life, our life is taking on many changes right now. Our children's needs are changing as they grow, their fatigue seems to increase daily, their battles are some days harder, but one thing stands firm... GOD. I was reading my Bible and something that God reminded me of is the scripture that says that God is the same yesterday, today and forever. Truthfully, our lives have changed drastically. The schedule we keep, the things we teach our children, even the way we go about our day. I never dreamed when God gave me children, we would walk through all of the things that we have. However, I celebrate continuously that they are mine. I have been really praying about way's that I can have outlets to share what God is doing in our lives. I often share cute stories on here (and I still will) but my blog is going to begin to take a different road... I want to share what we face and share how God has encouraged us. I want to share a look into our lives in a deeper way. I often share the surface and the "cute", but I'm beginning to realize God has a purpose in what we have gone through. We have seen many people draw closer to God because of the story of our children, even have seen people come back to or give their life to Christ for the first time ever. I LONG for more of that. So, I welcome you to my new blog. In the face of Mito... a disease that seems so big, God has held out His hand and He has helped us!

Facing Storms...

Last week, I had the opportunity to share at the Christian School here in Farmland. I have the opportunity again on Wednesday morning. My husband was supposed to go, but he's sick and struggling to say more than a few sentences with out coughing. So, I'm nominated. I really enjoyed myself last time. I am excited about it this time. I have struggled to listen to God though today and to discern what I'm supposed to say (not really had much time since I just found out at 3 I'm doing it. =) Anyways, as I have gone through the day, I have battled thoughts and frustrations about the kids therapies, doctoring... etc.... I have been battling just to let go and trust God. I was reading in Matthew the story about Jesus walking on the water. The disciples thought it was a ghost approaching their boat until Jesus so gently assured them that it was He who was approaching. I am not sure though if Peter really had faith or was just plain crazy! He cried out that if it was really Jesus, allow Him to come to him upon the water... well, He did! It was Jesus and He was there. I can't imagine that moment. The waters raging, the wind blowing, the rain hitting them on the face and there they were, in the midst of a storm, eye to eye walking towards each other on the water. Can you imagine the intimacy? I can't even begin to imagine what either one was feeling. Then it happened... Peter looked at the storm, he focused on the water below and He began to sink. I know I have begun to sink so many times it isn't funny. But there is Jesus, in the midst of it all... loving enough to pull him back to safety. Today, this story spoke to me in a different way. The boat in this situation was the ultimate safety. who in their right mind would walk on water that was raging and rough? For me, I sometimes find my kids as my safety. I know their medical lives inside and out. I know what needs to happen round the clock to keep them healthy, and yet... I have to trust God and STEP out of my safety sometimes. Tomorrow, I am stepping out of my safety and I'm going to talk to a group of Young people that GOD WHOLE HEARTEDLY desires to touch and use. In the midst of all of this... the storm is where Jesus is standing... I think all of us could say we have had storms that felt as though they could suck us in and destroy us. But, there is an outstretched hand waiting... I know God is calling me to far more. I want so badly to get involved in finding a cure for the cause of Mito, but today, I feel in my heart, God is asking me to share the love of that outstretched hand in the midst of the storm. I could work to find that cause for a cure, or I could trust that Jesus holds my kids in His hands and I could share the love that God has for every person on this earth, that I have so much found to get me through this time in our lives. So, today, what boat are you sitting in? Is Jesus asking you to get out of it? If so... DO IT!!!!!!!!!!!! There is so much blessing when you reach out and take hold of that outstretched hand!

Facing a long day...

Well, today just seemed to be so long. We had to go to physical therapy today in Muncie at 9:30 a.m. Joey faught so much doing PT today. Not sure why, but he was sure not into anything. I was so impressed though by the patience of the therapist. She did wonderful with him, never lost her cool and found ways to get him to work even when he didn't realize that he was working! They are waiting on a call from the doctor on making a decision on whether or not to move forward with a belly binder for Joey. All at rehab feel it would be wonderful, but they wanted Riley's input. So, another day of waiting and wondering... I think they are going to hold off on the splints for his feet right now. He goes back and forth on needing them. However, that is also the nature of his disease... so, again, we'll see. After PT, we were off to Riley for our monthly speech therapy there. It was a good visit, she felt Joey is getting better with feedings, but he is only taking small tiny steps. However, as long as those steps are FORWARD, we are in good shape, so we'll take that news. =) They'll be seeing Abby there next month when we go. They'll do a full evaluation on her while we are there. Hopefully they'll have some good input. They have done well with Joey. We are currently working on drinking out of a straw cup as one of his rehab goals. He seems to be getting more interested and we have seen a couple of good sucks... so soon, he'll be taking off and bye bye bottle. =) Tonight, well we cleaned around the house. It seems the house can get so messy so quickly... but hey, easily fixed! Well... enough about today... I'm wiped out!

Meet Leggs...

Well, this is leggs, or rather a look alike of leggs. Leggs is my dad's pet chicken. I know, some of you have absolutely have to be wondering by now. My parents do Children's ministry and one of my dad's characters is Chef Stand on Word. Well, the Chef has his pet chicken "leggs" that he carries every where. Well, Joey met leggs for the first time tonight ever. Leggs had been retired and replaced by a new look alike. I had to chuckle, most would probably wonder about a pet chicken, but this chicken is so popular, my dad has his legs taped on with veggie tale bandaids. Yep it is true. Leggs no longer travels to share Jesus, but instead, he finds himself being tucked into my mom's side of the bed nightly... and now, has found himself being raced around the house by Joey and GROWLING... not clucking, growling and biting the family! =) Oh the joys! Abby enjoyed making little sandwiches with my mom tonight. We press out little crescent rolls and stuff them with meats and cheeses, wrap them up tight and bake 'em. I can remember when I first made these how much fun it was... I still haven't forgotten. Abby had a blast! However, she kept telling grandma what grandma could do... not waiting to find out what Abby could do. =) Oh, and a side note... I was nervous about blogging today... yesterdays seemed to stir up the attention! =)

A day at the 1 Fun Farm

Mommy and Aunt "Kisti" took the kids over to the fun farm here in town. We had a pretty good time. We ran into "The friends" as Abby would say (Toby and Dora!) We enjoyed ourselves. Here are some pictures to show you the kind of trouble we got into....

Memories and excitement!

Well, if you will recall with me awhile back, I told you that Abby and I made a lasagna together for my birthday.... well... here it is... her professional cheese spreading abilities! =) This girl loves to cook AND she'll watch a cooking show on food TV any day over watching a cartoon... yes even over Dora! =) Ha! That's my girl. Well, this same cute little girl was a purse snatcher today... yes I REPEAT a purse snatcher! We were at McDonald's with my dad and she ran past a table and snagged some little old ladies purse. I made her return it apologizing and the lady tucked it under her arm thanking me but looking at me as though I was snatching it next! ha! Oh my. Anyways, today was a pretty good day. We got exciting news that Joey has strengthened. This is something not to be expected. The doc was VERY excited! So... that was a praise! We are very excited. Now, I'm tired. Two trips to Riley back to back is more than these bones can handle! Night!

Lost in the shuffle...

I seemed to have gotten lost in the shuffle the last few days. I feel like my days have just all run together and well... I'd just rather sleep than blog. =) Today, we went to have the kids fitted for big kid strollers. Well, we ended up leaving realizing that we were getting actual wheel chairs, not strollers. That was hard. When Abby climbed up in one to see how she did with this, my heart sank. I felt tears flood my eyes. I felt like I had given up on them and I felt like I was giving into their illness. I struggle with that. Being a mom of sick children, you get all kinds of people with all kinds of opinions. I questioned "Is my faith not strong enough" or "Am I doing something wrong." But then I look at the here and now. God says NOT to worry about tomorrow for Tomorrow will worry about itself. So, today, I look at what is going on. My children are not healed today. I pray every day that I'll wake up and I'll see a miraculous change in them but for some reason, we haven't seen that yet. Today, I pray, but I see my children tired after walking through the grocery, or running to the post office, I see them struggle with eating the more tired they get, I hear words begin to slur, I see legs begin to shake, and you know, I realize, I haven't given up because I am still trusting God. I'm still relying on Him and today, He has provided these chairs for my children to help them through... Tomorrow... I'm not worried... God knows the answer. Do I fear it, sometimes... but I'm not going to allow it to destroy my today. Today, my daughter picked out pearl pink legs for a chair that's going to enable her to go watch a Dolphin show at the zoo with out climbing several stairs to sit in a bench that she can't see over the crowd and then not enjoy the rest of the day because she had to climb stairs that exhuasted her. Today, my son picked out orange legs for a chair that is going to allow him to enjoy going places he wouldn't be able to go on foot because he struggles to make his muscles all work together. So... it's ok. I will take this and I will thank God there is something to make today better. I just want to say thank you to every one of you who has given us hugs through this, who has prayed heartfelt prayers for strength and healing, who has sent notes or cards of encouragement... That means so much. Your kindness has been such a blessing. I pray God blesses you for your kindness and your love for our family. When we face these things, nothing means more than just hearing "We love you." Those words can take a heart much farther than any other! So, thanks! We feel loved by so many!

I forgot to mention...

Oh yeah... My good news for today....

I lost 13 lbs. now!!!!!!!!!!!!!!!!!!!!!!!

In the midst of frustration...

I'm learning a lot from my kids right now. Tonight, I was putting Abby to bed and she had been really being a stinker tonight. Into every thing, not listening, asking the same question a million times, making a million demands with a pleading whine to back them up and so on... Finally, I sighed a sigh of relief when I realized our toys are finally picked up and it is BED TIME! Yes, sweet bedtime... but oh the listening didn't begin here. Just another battle. In the midst of it though, she sweetly proclaims, "Mommy, I love you." I melted and every thing was just ok again. For one moment, I was just in a moment of awe. My daughter said she loves me. Then I have to stop to wonder, does God feel that when we finally stop our crazy lives to tell him that? Does he have the same warm feeling that we do when our children tell us that? I think that he probably does and then some. So, tonight, won't you give God that time to snuggle up and say, "Papa, I love you!"

Distractions...

I some times wish I could be like a horse and wear blinders on my eyes. I tell you, here lately, God has been trying so hard to speak to my heart about changes in my life and it has been so hard to stay focused. It seems that when God begins to work, one distraction right after the other pops up. My house is a big thing. If my house isn't organized and clean, I'm a wreck. This week, it's been a challenge keeping the house up. I get depressed and worked up about the way things look or I just get frantic and chuck every thing because I have to get things done. It's so hard. Anyways... I may not be able to wear physical blinders, however, I can bump it up spiritually by prayer and study. It's so hard to remember that we have to just lay every thing down and Go to God. So, tonight, I'm going to do my best with that and sit at God's feet and just let Him work in my heart!

NeEdInG sOmE sLeEp.....

Is there a cure from kids who stay up all night? Oh my! I'm beginning to think not. Joey has been sleeping through the night for the last 3 weeks, but he has now made up for lost time... HE'S NOT SLEEPING! Then, you have my sweet little Abby who thinks it's much better to sleep in mommy's bed than her own. Oh man. If you see me walking around and I don't say hi... it's OK... I'm just in a fog. Nothing personal! My blood shot eyes probably won't recognize you anyways. ha! Oh, I just love my kids. They are so wonderful... however... Sleep my precious babies SLEEP!!!!!!!!

Fun times...

Yep, you see it right! My kids are sitting in skillets. Joey decided to empty the drawer of my stove tonight and after some stressful events today, I decided to join in the laugh instead of whisking them away to put them away. Abby battled much fatigue today after her negative experience with OT yesterday. She just sat around. But, tonight, she perked back up a bit and look out living room! It was good to see her being mischevious and a stinker! This is a thankful mom for that tonight! =) I tell you, my kids mean more to me than anything in the world. It hurts right now seeing all the changes for whatever it may be, but at the same time, I see Jesus in their every smile, the way the laugh, the way they don't let things get them down and keep them down. Today, when Abby was so fatigued, she'd reach up and rub my face and say "I love you mom, I'm ok." I just pull her closer and pray. Joey well, he just ran around giggling all day> I think he managed to get a tickle bug in his shirt! ha! Anyways... I thought I'd share in our new form of use for skillets... by the way, if you are ever wondering... they spin well on carpet... Try it out some time!!!!

Rough day...

Well, today has been a rough day. I started my morning with two crabby kids who didn't want to listen to anything. Then, we accomplished school... (that was the good part of the day! Abby always cooperates for school! Her favorite!), then we were off to rehab. They have decided that Abby needs to be drinking thickened liquids (Joey does this as well.... with poor muscle tone in swallowing, it helps you not to aspirate the fluids into your lungs). I was disappointed to hear that. But, it's doable... then, we leave rehab and both kids fell immediately to sleep. They didn't wake up when I carried them in... as I opened the door... I was overwhelmed by a burning smell. I run to the kitchen where I had left a roast cooking in the crockpot, only to find that the porclein bowl had cracked and water had gone every where from the bowl and the meet was now sitting in the bottom of the crockpot burning! So... I clean this up all the while... Abby slept three hours and when she woke, her legs gave out because she had been pushed to far. That was hard for me to watch and Jeff had to help her while I gathered myself in the other room. She is doing better tonight. Very tired... Aunt Christi was wonderful to come over and watch the kids so I could go to the Building to Bless with Jeff tonight. I enjoyed that! Poor Abby though, she never just sits especially when aunt Christi is around... she sat in the chair all evening. So... Joey utilized aunt Christi's time VERY WELL! =) HE kept her hopping! Anyways... things continue and Abby was very talkative tonight. As soon as aunt Christi left, she never stopped talking! I think she talked herself to sleep! Hmm.. must get that from her daddy ;) So, we await tomorrow! Wednesday is our home day and I rejoice for Wednesday! Most get excited for Friday... but NOT ME!!! Bring on Wednesday cause I just wanna stay home!!

It's my birthday!!!!

Ok, Jeff has heard that so much that he's about sick of hearing it! =) Sorry honey! I love you anyways. Today was a good day for the most part. We had a busy day. Joey has rehab on Monday mornings. His Physical therapist is considering fitting him for ankle splints and a belly binder. I was a bit dissapointed to hear that, but at the same time, recognize that it might very well help him. So... I'm up for anything that helps. Then we raced home... Jeff and Abby argued like a brother and sister while trying to share the couch! Oh man, it was hilarious! Then, Abby started on me and I fell short and had some power struggles with the girl. Oh, what can I say??? I try so hard not to... She's just so strong willed! =) So, off to the doctor I went to find out my blood pressure is too high... Gee... could it be stress? So, I have six weeks to change that... So, you can pray for me to have the strength to make the right choices and stick to them! =) Then, we were off to see Granny... It was an interesting visit. You can ask me more later. I'll be nice today and not tell all. =) Then off to home... Abby and I made a home made lasagna together tonight. She loves cooking and well, when she's up for listening, I love letting her help. It was great fun... look out though for the REALLY cheesey spots where Abby just piled the cheese on. Oh man! Little stringy! It was scrumptuious though! =) Thanks Abby! the kids and Jeff gave me their cards... Daddy had a hand in bubby's though... hmm... He thinks his son is going to think like he does or something! Honestly, I'm in trouble. I see a sinickle sarcastic side in Joey.... I don't know if I can bare to live with two of them... now for my favorite time of the day... BED TIME! Night all!!!!

Busy days....

Well, today is certainly Sunday... always seems like a long day for me. I think it is just knowing every one I know and hang out with is at church. So, sitting here watching my kids do their usual, I get the old "Hum drum" syndrome. Anyways, we played some catch up with Abby's schooling. I've been really struggling to find a balance between docs/rehab and completing school work. So, we are a bit behind, but catching up nicely. =) You'll note the picture of the finger puppet alligator she made today. I find normally kids make the alligators growl and bite, but not mine... her alligator was kissing every one tonight. Too hysterical!
We have been putting out our fall decorations this weekend. I just love fall. We enjoyed going to the Muncie Farmer's market at the Minitresta center on Saturday. The kids enjoyed picking out all kinds of fresh pumpkins and gourds... OK, so did Mommy. I'm not sure why, but fall is my absolute favorite time of the year. I get more excited about the pumpkins and such than I do even the Christmas tree. So, out come my pumpkins early! Summer is over! =) and Fall has begun! I love to watch the trees change and the smell of them often burning the leaves. Hmm... OK, sorry! Got off on a Mindy trail. =)

Tomorrow... well, we celebrate my birthday. We had a great time celebrating with my family on Friday, but tomorrow is the actual day. We have rehab in the morning... I have a routine appt. in the afternoon.... some where in there we are going to eat ice cream with my granny at the nursing home... so busy day tomorrow! It never slows. Oh well... keeps us moving and motivated! =)

Needing a change...

Life has been chaotic here and as fall sets in... I feel the need to REARRANGE EVERY THING! Yep, even my blog. Hope you all like the new look. I have added some new links of pages I often visit. You will notice that I added Good search to your right. If you click that link, it works much like google.com and, every time you use it... you can select who you want a donation to go towards. If you would like to use this, you could pick the United Mitchondrial disease foundation and each time you do this, you will be donating 1 cent to the UMDF. I know 1 cent doesn't sound like much, but when you use the search engine frequently and your friends start using it, you start to build up those pennies to a considerable donation within a year!

A big congrats...

Well, wedding bells will soon be ringing again for yet another Stump to marry. Today, Jimmy proposed to Christi at the racing museum in Indy by the Fountain. Christi is very excited and I think Jimmy surely must be as well. =) We are excited for them and with them! Happy news! Christi, as dad would so well say "I'll dance at your wedding" oh and just in case you were wondering... the Praisin Raisin will appear at your bridal shower too! =)

Too pooped to pop

Do you all remember the popples? Oh I used to love them... However, I remember one pair of jammies I had that said "too pooped to pop" well, today, I am there. I just feel like pulling up into a little ball and sleeping. This certainly has been a busy week with lots of mixed emotions. I find myself at a point of just saying, I need that quiet place. You know, that place where it is just you and God. You can tell Him your thoughts and feelings and find comfort in just knowing He is there. I think I'll take that place tonight as I sleep. I am so thankful for a God who loves us inspite of ourselves!

Growing together as a growth group...

We had a really great growth group meeting tonight. I tell you, if you haven't gotten in a growth group, you really need to. It is wonderful to work through life's questions together and help each other understand Bible truthes. I just love our group and those in it! Thanks for coming guys. You are all awesome and wonderful!

Now, for the picture, this is my Abby! It was her favorite exhibit at the museum... what can I say, the girl loves to preach! Ha! She loves to preach at her brother and mommy and give them what for! =) Please pray for the kids, Abby is border line Pnuemonia and Joey is following close behind. Thanks much!

He did it! He did it!

Well, every night when we go to bed, we always say bed time prayers together. Well, several months ago, we asked Abby what her prayer was and she said "Jesus alive." Every night it is the same she prays "Jesus alive, you pray now!" Well, tonight, we asked bubby if he wanted to pray, mind you, he normally is climbing on the bed or pulling out toys... well... not tonight. He walks over, takes my hand and Abby's hand and says "Jesus alive" Well, mommy was over come with excitement and well... I screamed. Scared him... so he politely backed away! =) I am so excited at what God is doing in his little life. It is absolutely amazing to me. So, it was a wonderful in to an exciting day! Happy Labor day to all!

Growing up...

Well, tonight, I was tucking Abby in to bed in her sweet little voice, she gets very serious and says "Mommy, is Jesus in my heart?" I said, "well yes of course honey. As long as you want Him there, He'll be there!" She then says "Well, when the dinosaurs come into our house and go ROAR (as loud as she could say it), will Jesus be able to help us?" My response, "He sure can. As a matter a fact, Jesus can do every thing we need Him to and He keeps us safe." Then I had to chuckle because she says "Even when they say Roar mommy?" Oh, the innocence of a 2 yr. old! She finally went to sleep with peace of mind knowing that Jesus can do any thing! I certainly wish that I could have her faith. She is so trusting and she absolutely has no doubt that even though she can't see Jesus, He is there and He is her best friend keeping her safe!

Whew... did you miss me???

I tell you, it's been a busy few days. Thurs, Aunt Christi came over and Jeff and I had our first date in a long time. We didn't have a lot of time, so we just went to the chocolate moose here in town, which might I add... is ALWAYS worth the visit. Then, Friday, we were off to Riley again. Not a bad visit, however, both kids obtained a new medication... if you haven't been over to see my med lists on the refrigerator... it's worth the attraction! Then, we made a breif stop at the children's museum... (let me tell you, all the Indy trips we make... it's well worth the memberships every where! we are the family they dread to see come in because we use our membership and then some!) So, after all this, came Saturday. We have tried NUMEROUS times to mow (beginning thurs). First, the mower that was left here by the last family wouldn't start (mind you, we don't have a mower), then we decided to try putting some gas in it (who would have thought???), then we started mowing only to realize... hmm... it doesn't shut off! So, we went back to the handy dandy way of plucking the spark plug! It got too dark before Jeff could finish, so we tried again yesterday... ONLY the mower died... no more life (and no, this time it didn't need gas)! So, Jeff headed into Muncie today and borrowed his mom's mower... well... it was a trip... there's a lot of grass here! It was tall grass to mind you! We had the entertainment of it dying and we couldn't get it restarted and well... Hmm... the spark plug had come undone... it really was like watching a comedy act today! I'm sorry you all missed it! So, after all that hard work, we took a pretzel break (above picture). Umm... they are Joey's favorite (he was sneaking in some extra carbs today!) Then, as if all this wasn't enough... we came in to find our phone not working! Ug! All the wonderful fun! Jeff was able to at least make it to church with no catastrophic insidences!!! =) So... here's hoping to a peaceful quiet day tomorrow... oh and No, our grass still isn't completely mowed... it's been a day!