Joey

Time is short because we are needing to leave for the pastor's short course... so here are my updates from the caring bridge through out the morning... Thank you for the over whelming response of e-mails, comments and prayers! You are all AMAZING!!! your words have meant so much!

MONDAY, JUNE 30, 2008 09:05 AM, CDT
**update**
Ok, well this is where the rubber hits the road. we aren't getting the care we need right now. Our attempt last night was shot down by a doc who doesn't understand mito, the doc at Riley who would be the care taker for this has been not hearing these things or helping because he isn't changing the diet to help the immidiate need, the ped is working as hard as he can to get things rolling with GI at Cinci, so here is where I have to step back. I have realized today that I have done every thing within my possible power. Things are in motion, just not as quick of motion that we need. So, I'm stepping back and I'm trusting that God is in control. I am NOT quiting, I'm just saying this is bigger than me and my power and I'm going to rely on God! A verse that a friend gave me (thank you Lorna) is that when I am weak, he is strong. so, I might not be strong enough for this, I have done every thing in my power, so now it is time to let go and let God be strong. I can only sit now and love my son, I will nurse his health as best as I know how and I can pray with out ceasing that God is more than able and that HE is going to move this mountain. So... we are waiting now. we are going to move forward with our plans. There is a hospital that is very good 30 min. from the cottage. So, the kids and I are going to go and rest and watch movies togehter while daddy goes to meetings. Then on the side, I'm working on gathering pictures and info about Joey and what his set backs are, I'm going to get letters from his therapists about areas he is loosing ground and when we meet genetics in August at cincinnati... I'm gong to hand them it all and plead for help! So... there is our plan of attack.
Hello every one. we are currently home. However, we are waiting on a decision for our pediatrician. Unfortunatley, the doctor on last night did not understand metabolic children and Joey's blood work was decent for hydration, so he did not do anything about the rest of the issues. Joey is still weak today, although, the pain is down some. We are not sure what today will bring or what our ped will decide on. I'll update when we know. -Mindy

ER...

We are leaving for Cincinnati. Joey is not doing well and worsening as the day goes on! More when we know. He seems to be in some pain as well.

Faith that can move mountains...

You know, I truly wish that I had my daughters faith. She is wanting to stay up tonight to see the moon and the stars. Daddy told her that if it wasn't too cloudy that we would do it. This morning, whens he got up, she saw how cloudy it was and that it was going to storm. So, she asked daddy if she could pray to Jesus to take the clouds away. She did and guess what He did? HE DID IT!!! Daddy and I wanted so badly for her to understand it may not happen... however, we waited and it did! God answered her prayer. I only wish that I could have just a tiny bit of her faith! I feel most days I don't have the faith to get through a day and yet here she is as precious as can be just knowing that God loves her enough to answer prayer!

Bear with me...

OK, I hate doing this because many of my readers are not dealing with medical stuff... however I am desperately needing some help. Some of you may have thoughts even though you don't deal with this... so feel free to share ANY thoughts! Joey has a Bard button G-tube. For those of you who are not familiar, that means he basically has a beach ball button on his belly. Exactly what it looks like! So, we are going to Quaker haven Camp this next week for a pastor's meeting. We have the opportunity possibly to utilize their little lake front beach. However, joey can not be immersed in lake water because of bacteria and basically having an open wound on his abdomen (skin does not seal around the button so that the button can be moved or changed as needed). This can allow water to enter his body or his tummy, but it would not allow much, however Lake water carries so many foreign bacteria, it could cause some HUGE issues with just a tiny amount. We are looking for something water proof yet not too invasive to cover his bard. I thought of saran wrap and tape, but it did NOT go well! He hated it! Over loaded those sensory issues! Whew! Any thoughts? I really want him to get to experience just like all the other kids and that's why I'm searching so hard. I try to find some way in every thing we do to accommodate their special needs so they don't feel "different" or "left out." so... thoughts PLEASE!!?!?!? :) thanks!

sick day...

Well, we had plans to go out tonight to celebrate my mom's birthday at my brothers house... but we have decided to call today a sick day. Bubby isn't feeling well again and mommy is still sick... Joey is displaying in this picture just exactly what mommy feels!

Nothing better than a big quilt and a nap when you don't feel good!!!!
Sister has opted for some cheese and the Little Mermaid Movie today. Forget this sick business! She is having her own party! I had told her about tonight, so mommy has agreed to make a cake here at home wiht her and play some games when daddy gets home. Probably we'll have a round of Dora Candy Land. :) Yeah!! Ok, back to resting for mommy!

Preperation....

Well, it begins! Abby starts preschool this year and we have decided that we are joining the world of home schooling! Many don't always agree with home schooling, but I was home schooled and well, I survived! Not to mention, my kiddos have a real different reason. Now granted, we had decided to home school before we knew they had health issues, but those have been a confirming factor. Their health will cause them to miss so much school, I think they'll have an unsteady education... so here it goes! Hats off and mama's working on lesson plans!!! If you have any creative ideas for fun activities, field trips, or exciting things to throw into the groove... let me know!!!! I'm nervous but very excited that we are getting ready to get started!

Excitement!!!!

We got home tonight and the Frost family showed up with a refrigerator for us! Yeah!! Joey enjoyed playing in Jacks truck and Abby enjoyed painting her nails with Milah! To funny! Our refrigerator is not doing well, so this was HUGE blessing!!! We are very excited! Abby is about to jump out of her skin wanting to put things in the new refrigerator! Soon enough we will! Have a great night all!

Powerful...

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I absolutely had to post this tonight... I found a link on Tonya's blog. If you have hurt, every needed encouragment, ever wondered how you hold together... this is a powerful message... PLEASE follow it through! Awesome! It will bless you to the end!

New look...

Well, I finally have a new look! I don't know at all if I like it so do tell your opinions... It is a little bit much on the floral aspect for me... but I do like these flowers... so we'll see how long it lasts. :) I am not so computer saavy as I would like to be so I lost a bunch of things in the process but I'll build them back up eventually! For now... I'm going back to my couch to rest. I have a seriously irratating cold that miss Abby shared with me and now Joey is coming down with it. So, we are waiting to see how we will fair with this! Miss Abby had to be taken for emergency care today with her heart again. She was stabalized and fine when we got there which is good, but yet they really need to see her at the more "critical" point to really diagnose. So, they are ordering a halter monitor through Cincinnati. I hate to ask for this, but I do pray they see an episode so we can figure out what on earth is going on! Have a great day all! It hink we are about to get rained on here in Indiana!!!

Bloating and doctoring...

Well, the pictures were a good thing for the doctor today. Here is one of them that I took with me. Joey has had so much trouble with severe bloating. By the end of the day, he is so much in pain and so swollen! This picture is mild and only half of what it normally is by bed time! Poor guy! the doctor really listened today and is running tests! I'm so THANKFUL. I really like our ped. He is great! So, we'll see where we go. At this point, we don't have to rush to be admitted but he is getting closer and causing more concern. So... holding my breath and praying real hard!

Pictures...

Hey all! Well, tomorrow is our big day. we are taking the kids to the peds office. I'm not sure he'll be pleased because I have had my camera busy this week. He's going to see all that I'm talking about from pooh, to bloating, to looking awful... it's all there in proof! :) I hate being the pushy parent, but I'm just worried about Joey's health right now and where his nutrition sits. So, pray for my strength tomorrow. Any one want to come along and see our beautiful pictures? Note, I didn't share them on the blog tonight! :) NIght all!

Needs...

Just this morning, we needed a microwave... I finally took it off my blog! we have been offered three now!!!! :) It is amazing how those things get answered and taken care of! The kids are still "iffy" today on how they are doing... Joey seems to be getting more tired and out of it... so we'll see what the next 24 hours brings!

Standing at the edge...

For a couple of weeks now, it has felt like we are on this line of questioning what is next. Abby's struggle with her heart has shook our house hold. Then we move onto new turf with both having different struggles and I question how long until the ground gives out? Medically, I feel like I'm standing on this edge looking down and one strong gust is going to send us toppling over! I really can't put my finger on it, but it just feels as though we are at a very unstable place right now. Then I find myself torn because many of our friends suffering from Mito are going through it severly! I pray for them, but I feel this selfish cry inside of me that screams "God, don't let us ever go there!" I sobbed today as I read the caring bridge site of a little girl Abby's age. She was rushed via ambulance at 95 mile an hour to Cinicinnati because the weather was too rough to life line her... I fear that moment. I fear the unknown. I know God calls us to not fear and I know that His perfect love casts out all fear, but how do you grasp that? How do you let go of your childs future and completely trust that whether it all plumets over the edge or not, God is in control? Joey is going back wards right now. His speech therapist sees it and has shared with us her concerns. He is not eating well and we are beginning to have to use occasional Gtube feeds. Abby is in a similar boat... It's a struggle to hold onto faith some days... I'm having one of those days! I plead with you to pray for every family who's child suffers from Mito. I pray that God draws near to each one! This week, I have held close to something so special. I often pray that in the hardest moments, God would show himself strongly to my children. I came to tears this week when Abby says "Mommy, did you know Jesus likes to sing?" I sat there stunned for a moment and then said "Oh yeah, why do you say that?" She replied so proudly "Because mommy, some times when I'm scared, he sings to me!" I couldnt' help but cry! My favorite verse that gets me through is in Zepheniah 3:17 and it talks about how HE rejoices over us with singing... Thank you God for moments like these!

Scenes from the home coming....

Well, it is official... my husband is home and life is good again!!! We have missed him so much! I'm so glad for what he did and ever so proud of who he is and the love he has for serving God... but I'm glad he's home and we are together again!!! As we pulled out of the church last night with daddy in his Jimmy in front of us, Abby quoted it well when she says "Mommy, daddy is back, I'm so glad we are together again and we will all be happy now!" you can see more pictures on Jeff's blog.. click here

I snapped!!!!

Ok, so is caging your kids legal?? No, just kidding! Today when I got home from Angel Food, I had to take the basket out of the freezer and rearrange things. My monkies got a hold of them! This was the show we had today! What a hoot!!!!

Hmm... Almost looks natural! I think they reall are monkies!!!

Angel Food Ministries...

There were a lot of people on Vacation, at graduation parties, or away with the New Orleans team... thank you so much for those of you who pulled together this month to help make Angel Food fly today. It was a small crew, but heavy working! Thanks guys! I was blessed to get to be there today. Have a great saturday all! Don't get to wet! It's starting to storm at my house!

party time!!!!

Hey all! We were at Riley on Thursday. Joey had speech therapy. Miss Abby was glad Aunt Christi was along! The pagent ladies from Indiana were there doing a prince and princess party! Abby got to go! Here are some pictures. Abby made Joey a sheild since he couldn't go. The party was loads of fun for her though! Night all!

Tagged...

I was "tagged" by by Shan, author of Our Journey home to fill this out, so here goes...

things about me...

4 places I go over and over

1. Wal-mart
2. the pharmacy
3. church... Farmland Friends Church
4. the doctor or Cardinal health rehab center

4 people that email me

1. Brenda, she is such an inspiration and a help to me
2. Dainta, she keeps me up to date and helps me with mito questions
3. Shanna, such a support but she always makes me laugh too!
4. Renee, she always checks in on me and continues to pray for our family!

4 of my favorite foods

1. mashed potatoes
2. chips and cheese
3. popcorn
4. meatloaf!

4 places I would rather be right now

1. Some place quiet
2. where my husband is
3.sleeping
4. taking a hot bubble bath

4 movies I could watch over and over

1.I am pretty boring... i just don't know...
2. any suggestions?
3. I'm open for any!
4. Still can't think! Sorry!

4 people I want to know more about...

1. Tammy
2. Cari
3. Aleyna
4. Abby

the final straw...

Well, they say that a person can only take so much... tonight was it for me! I lost it!!! We had another dead fish in our tank. So, I got him out with the net, put it in a bucket and set it in the bathroom. Well, Abby had left the bathroom door open. Joey was awfully quiet... so I go looking for him. He comes out of the bathroom when I called his name and I said "What are you doing honey? You know you aren't supposed to be in there." So, he holds his sweet little hand out... I'm thinking he has found one of Abby's potty pennies... NOPE!!! Not a chance... he lays a DEAD gold fish in my hand... I was so not expecting it that! I screamed and threw the fish... YEP!! It bounced off the wall... left some nasty residue!!! After calming down... I wash his hands and mouth out JUST IN CASE!!! Flush the fish, clean the wall and call my husband... his response? You guessed it... SERIOUS LAUGHTER!!!!! No compassion! none! Poor me! Oh well... I suppose it is worth the chuckle! :) Night all!

Lonely...

Man, I am home sick for my husband. I miss him so much! Jeff is so special. He is not just a husband and father, he truly is my best friend! We talk about every thing. I missed him so bad and Miss Abby was having a rough day making my day rougher and so I snapped when I heard his voice tonight! Poor man! I was a loaded cannon! :) He is doing well, but says he's missing home. The trip seems to be going good. You can check it out on HIS blog. He said that they have cock roaches the size of a half dollar coin there! Eeekkkk!!!!!!!! I would not survive! He can leave his bag outside when he gets home! :) No roaches for me!!! We are keeping busy here. Another mito family stayed with us last night. It was nice to talk and understand each other! First friend who's ever been here during med time and they didn't shreak at the amount of meds I was giving my kid! We were cracking up at each other and Our little routines though! Well, I hope all have a great night! I am dropping on a pillow now! night!

I married a crazy man!!!!!!!

I am so digusted right now!!! My stomach is turning!!!! My dear husband just called to announce that while in New orleans... he ate cow tongue!!!! He was the ONLY ONE brave enough to do it! Sick man! Yuck! oh, I still love him... but he didn't do much for my appetite for lunch today! Yuck!!!! So, there you go... that is my update on New Orleans for today!!!!!!!

Fun times...

Well, daddy is officially in New orleans! They all arrived safely around 11 last night I think. I can't remember for sure. It sounds as though they are having a great time right now and every one is getting along great! That is always stressful with missions trips. you never know how every one will unite and do together... I hear lots of chuckling in the back ground when he called to check in! So, I'd say we are doing great!!! We had a pretty strong storm last night. Unfortunately, we were driving in it. We were hit by a few Large chunks of trees, but no damage. We managed to get back to my parents house and then drove home when it died off. Abby was VERY worried about dadd... so he sent her this picture to let her know that he was safe!

This was taken in New Orleans where they are staying. It really helped her to rest at ease that daddy was fine. She gazed at it for like 5 minutes this morning! We miss you dadddy and we love you!!!

Just to prepare you all, also, if you see a grey mini van with no driver around town... it's just Joey out for a cruise with mommy's shades on! he's a bit short to see in the drivers seat. he thought he'd take up driving while daddy was gone!

3 year old photography...

Miss Abby at Taco Bell just after receiving her new digital camera from our friend Jessica. She was so excited!!!
First picture by Abby...
2nd picture by Abby... yep, it's the bottom of a cup and the burrito wrapper from taco bell.

Where's the beef???

Some cow ain't to happy! I just fried 10 lbs. of beef for a bridal shower... mmm... yummy!!!!

Summer time fun...

I feel like I should say spring time... but it is HOT out side. The kids are not tolerating it well so we have short intervals JUST BEFORE bed time! Today was a Riley day for us. Joey had speech therapy and Abby got her eyes examed. She got a good report. A little weakening in the left eye, but nothing major so we were THANKFUL!!! Hope you all have had a great Thursday. We have a jam packed few days coming! Whew! Night all!

Resting up...

Well, our week has started out as a rat race more than usual. Miss Abby gave us ALL a big scare on Monday requiring us to have to taker her to Cincinnati. Her heart is acting up. She is fine now, but will require some monitoring. We are all wiped out emotionally and physcially. But, we are recouping! As you can see in the picture, Joey has had NO PROBLEM finding places to sleep! :) I'll be back to my usual blogging soon! If you don't hear from me, remember, you can always click the link to your right that tells about the kids stories. Those are updated daily and will tell if we are at the hospital. you can also leave the kids messages there! They enjoy those GREATLY! Night all!

Facing the day...

Aahhh... the fun is over... we've celebrated our anniversary... now it is back to life! this today is my project... LAUNDRY!!! We are scraping for anything and every thing to wear! Guess mommy better get busy! I think I might also face my dishes today.... aaahhhh... the life of a house wife! :) Have a wonderful day all!

June 8th, 2002...

Today, Jeff and I celebrate six happy years of marriage today! With all we have walked through, I can NOT think of any one else I would have wanted by my side! Thank you for being a best friend, a wonderful caring husband, an awesome father... thank you for being you honey! I love you with all my heart and I look forward to every year to come with you by my side! Happy anniversary Jeff!

Abby's art work...

Just wanted to share some of Abby's art work right now. She is really in to tracing her own hand and then coloring it in! Hope you like it... mommy is pretty proud! Oh, and she said she'd love to hear what you think to. :)

While the cat is away....

... The mice will play... NOT TODAY!!! Jeff is off doing a wedding today in Wabash, IN. Yep, that means he took my wheels! Our other car we drive really isn't ours and it isn't in tip top shape... so out of towners get the nice car! So... I'm grounded! Home bound! Locked in! You name it, I'm here! So, I decided it was project day. I have tackled the fish tank this morning already, put Joey down for his nap and then cleaned the vacuum quick in between the rain storms... (I like to do that job outside because of the kids allergies) and now, I'm taking a moment to blog before going on to scrub down my kitchen and then do detail vacuuming around the house... aahhhh... if only it stopped there! Stay dry every one!

The Pfohl limo...

OK, Many of our friends from Caring Bridge have asked what the kids wheel chairs are like... so here it is in full.....

Here we are separated.... joey has orange and Abby has pink
This is the side view of us together... we just finished shopping at Target today....
Here we are.... Yeah for Joey and Abby! they actually enjoy being connected. I'm not exactly sure why. It is amazing how they have so simply put two wheel chairs together. When I am along... it is so helpful... although... learning to turn has been a real trip1 but they are easy to guide even connected... One handed baby! No less no more! :)

Rat race...

I absolutely was exhausted last night and I forgot to set the alarm clock! So, at 7:48 the rat race began this morning. Abby was due at 9 a.m. to be in Muncie to have ankle braces adjusted. So, we had to GO AND GO NOW!!! We needed to leave by 8:20 this morning. So, I shook Jeff out of bed and we managed to make it happen. He changed the kids, got things together to take, fed the fish, grabbed me some breakfast to go while I made formula, dosed meds up, packed the formula bag and dashed for the van! Ha! It was insanely chaotic and we have NEVER EVER made it out the door this fast! whew!!! So now... I'M WIPED OUT!!! The kids and i have had a lazy day today. Tonight, we go help mamaw Pfohl move so I guess you'd say that we are storing up our energy! :) Have a good afternoon all!

Here is our latest family video...

Fun night...

Mamaw and papaw seem to always bring about chaos! Abby invited them over for an innocent dinner, and what do they bring...... THIS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

This HUGE beach ball brought some excitement to my living room...

We had a great time though watching the kids play. Nothing got broke and every one had chuckles... so, it was a good day at the Pfohl house! :)

Blah...

I'm having a blah night... ever have those??? I think some chocolate might help! :)

Warmer weather!!!

Well, Abby and Joey enojyed their water toy that Aunt Christi gave them! They thought it was a hoot... Abby sported her new goggles so she wouldn't get her eyes wet and Joey, well, he sported his good ol' fishy drawers that droop no matter what, a bloated belly and his usually boney little self! Poor guy! He needs some meat on his bones!

And we say good bye...

With sad hearts, we bid Goldie fair well!

Pennies for potty...

Well, we have been working VERY hard on potty training here lately. Miss Abby is really trying. We were once trained but after having surgery in Dec. we lost ground. But, she has decided she wants this... There's a little leverage... one penny for a dry pull up, one penny for potty and one penny for poopy... so we can get up to three pennies per trip if we try hard enough... So, if you find extra pennies laying around... they are worth gold at the Pfohl house!!!!