Costume day!

Abby absolutely HATES Halloween. She finds it very scary. Honestly, so does mommy! So, she has decided in her own little mind to call it costume day! We absolutely do not support the idea of Halloween's origin, however, we do let the kids pick out something fun and enjoy being silly. Joey was a dinosaur (we thought only fitting since he LOVES dinosaurs) and abby was tinker bell (only fitting since she's solely convinced that she is a princess! And she is!) Neither kiddo can have candy so we thought it would be devastating to them to go out and get candy door to door that they can't have. So, my family and Donna Jones put together some Neat little gifts for the kids. They had three doors to knock on (which was enough cause they were so tired!) and they were just thrilled. They had so much fun! Thanks guys for making this a fun day for them! Joey had some break through seizures today, so we are going to be calling Riley tomorrow in concerns to getting some blood work done and possible diet adjustments. Abby has had a mysterious fever... no reason the doc locally can find... so hmm... Not really sure. Thanks to all who support us and big thanks to all for the e-mails and notes in Joey's caring bridge page! God bless!

It's been a year...

Well, I can't believe it, but it has been a year as of the 31st that Joey was diagnosed with Mitochondrial myopathy. We are asking every one to let him know they are behind him. So many of you have followed him since the day he was born, others of you, we are just meeting and getting to know. I know Joey is a bit too young to understand, but we are asking you to go to his caring bridge page and let him know you are behind him. You can click on this link www.caringbridge.org/visit/josephpfohl just go to his guest book and let him know you are praying. I plan on printing every entry and putting it in his keepsake box. He has had so many ups and downs but over all he's over come more than the doctors thought he ever would and I know it's because there are so many of you praying! If you have friends who are praying, please pass the link along. When Joey's older, I want him to know full well it was prayers that kept him going! I want him to understand how much God loves him and how much those around him picked up the burden and prayed! So, here's your opportunity to share with Joey! Thanks all!

God provides...

Well, we have been seriously looking at a wonderful van since Friday and we have it now! I want to say that God seriously provides! This van was not really within our means right now... and it was provided. I'd like to say A HUGE thank you to Stoop's Auto group in Muncie. They made a way for this to happen by giving us an awesome deal and working with where we were at and what we needed for the kids. This was such a blessing. We are so thankful.

The kids had good visits yesterday at Riley. There is a considerable amount of information so as not to repeat myself a 100 times, I'm going to ask you to visit their caring pages this time. So... for Abby please go to www.caringbridge.org/visit/abigailpfohl for Joey, please go to www.caringbridge.org/visit/josephpfohl Please continue to pray for us for wisdom on behalf of decisions for both kids. Thanks so much!

Out with the old....

Today, Abby has a proud announcement... WE HAVE TOSSED OUT THE PULL UPS!!!! Today was our FIRST FULL day in panties with no accidents at all and she is so proud! She has been very excited! So... we are celebrating. Out with the old and in with the new. She loves to read comments that are too her... so feel free to give her a congrats below or click on her story at the left of this page and leave a comment in her personal guest book! She is absolutely loving hearing from you. Thank you to those who have visited both kids caring pages. That means the world! We are having fun getting to know some new folks as well. Abby has friends from ALL over now. Bubby does too... but he isn't really old enough to care... however, they make great things to print and keep in his scrap book. We have met several other families with mito, so please, pray for families that are much like ours. One family recieved some really hard news this week. As a mom who has faced hard news... I plead with you to lift them up. Their daughter's diagnosis wasn't what they expected. She has the most severe form of mito and the prognosis doesn't seem good... HOWEVER... we know full well that God is in control and every moment of every day is in HIS hands! They just celebrated her first birthday this past week. Night all!

Quick blurb about today...

Well, today has been full of many DIFFERENT events. I am very excited though however that we had some of the events. My morning started out wonderful with a walk with my good friend Donna. Then we moved into the usual chaos of med time... if you haven't seen my refrigerator door lately... you should take a peak! It gives you a full view of the meds my kids take. Takes a minute to accomplish that... after meds... it broke loose. tiredness showed. Joey got grouchy and wanted a nap and Abby, she went into her zone. The "don't mess with me and if you do, I'll bet your head off" kind of zone... well, she did some snapping today! We got through that and finally DADDY CAME HOME!!!!!!! That's the part of the day every one goes running... only I find myself retreating. =) That's my time to take a breath and get away. So, we packed up the car and off we went looking at car lots. We are trying to find a vehicle that will accommodate our up and coming wheel chairs... it's been 6 wks. since they were ordered, so we are looking at any where from the next couple of weeks up to a month from now... Time to upgrade the wheels we drive. Our car is WONDERFUL so I am a bit sad to say good bye, however, we are parting for good reasons. We didn't come home with a new vehicle tonight, but we are looking at one very strongly. So, we'll see what happens. Then, we were home... the drama began. Jeff and I started talking about future plans and Abby started getting fussy. She said to me "mommy, I want to move back to our old home." Well, our old home was a trailer and we were all sick all winter because it was cold and drafty and actually, we spent half the winter at my parents because every thing FROZE. Yep, sure did... I asked her why she wanted to go back "I had my own room." yep, that was her answer. She wants her own room. We love our house here, but it is a two story house. Jeff and I don't feel comfortable moving upstairs because if the kids need us, they can't get us. On bad days, the kids wouldn't be able to tred the stairs. Abby has a lot of knee pain right now... so it just isn't a good idea. So, that's daddy's work out room. Thus... the kids share a room. Well, there is a HUGE walk in closet in the kids room. We did a little renovating. The shelving in there is easy to take in and out... so tonight... it went out... Joey has his own room now. we had talked about that since we moved in... but never acted. HE LOVED IT!! Joey loves his own space, so both kids are thrilled now. I'll have to get a pic of his little room... SO CUTE. He played and played in there tonight. The good thing, he likes it a bit darker too... so he won't have to see Abby's hall light and hey, we all might even get a bit of extra sleep. YEAH! Well.. that was it... OH NO... I forgot... we started working on our drama. Jeff and I are doing a drama at our church the weekend of Nov. 25th. We started preparing it tonight. It was so much fun to start on. So, stop by that day! If you can't make it... I am sure I can manage to get it on video for my blog. =) Night all!

Yummy yuimmy...

All right, well, I have to say, with blogging, you never know when you are going to hear from your readers. Some things, you are shocked cause every one replies... others, you think oh they'll reply and they don't. So, I'm testing the waters today! Don't you love this picture of Abby? She's like a swamp monster or something... anyways... back to my content! We are daily looking for exciting new recipes. So... all you fanatic dieters out there just like me who has tried everything... we are needing new ideas for low carb. Both kids are on it... we recently found a french toast made out of pork rinds... (Sounds gross but tastes awesome!) and we have made a home made pizza... (tastes better than real pizza in my opinion! The kids LOVE IT!) So, any recipes you could share? Leave a comment below or e-mail me at pfohl4@hotmail.com Thanks all.

Way back when...

i can't believe I found this picture still on my computer! This is from last winter with that awful snow storm that we had. Our entire trailer was frozen even the sewage line... so we did laundry at the Farmland laundromat. Joey was still on O2 at this time and we hadn't found out about Abby. Aunt Christi and I were more tired though than they were when we left! They kept us HOPPIN'! Man, good memories!

When things slow down...

Well, I have been doing a lot of heart searching here lately. Things have slowed down a tad bit and I've had time to stop and think. I have been doing a lot of major cleaning and moving around my house... but some times you have to just do that in your heart as well. Since we have found out about the J-tube, I haven't been doing nearly as well. I've had A HUGE flood of emotions from confusion, to shock, to anger, to brokenness... but in the midst of it, I have struggled to channel those where they belong... the feet of Jesus. When I hung up from the GI doctor last Tuesday, I was driving and I had to pull over because my emotion was so great. My children were asleep in the back seat as we had just been to two sessions each for rehab. I sat there all I could say was "I don't understand." We had been on this path of doing SO MUCH better, and then this. At that point, when we reach that brokenness, God is able to move in the closest. In our weakness He is made strong. The catch is, in order for Him to move in... WE HAVE TO LET HIM. The Bible says that God desires us... He's passionate, caring, concerned, slow to anger, rich in love... you name, He is and always will be! Tonight marks a week since we found out about the possibility of our next step... and well, I'm letting go. You know, many of you who read my blog may not face mito, you may not have sick children, but you do have pain. Some is secret, some is known... but it is THERE. Just as the Shepherd carries the wounded sheep, so your Father in heaven wants to carry you! So, let go with me tonight... I promise... you'll love it when it is all over!!!

An exciting day... from start to finish!

Well, today has been eventful! Joey woke Abby up bright and early... all you parents know... this means mommy and daddy are up bright and early! Joey however was not social, he laid in the corner and screamed refusing to be touched. Apprently, he wanted every one up to enjoy his tantrum! Oh dear!!! Anyways, after a few minutes of being up, we realized Abby wasn't feeling well. She kept saying her chest her... well, my first reaction is to ALWAYS inspect her chest as sometimes we have what we had today... a topical situation! The girl was broke out in this HUGE red rash. Well, we decided this was doctor worthy... so we canceled PT today not knowing what was causing the rash and whisked the kids off to the local peds office. Low and behold, it was an allergic reaction... we have ABSOLUTELY NO idea to what... but we know that it was at least not severe at this point... so... we did find out that Abby's ear tubes probably need some help coming out. Our ENT is no longer here... so we will be seeing a new one very shortly. WE aren't sure what this will entail, but I'd almost imagine they may need to put her under to remove them. So... we'll see. We were very excited! Abby has finally gained weight! Yeah Abby! She has been so low that we were thinking Joey might catch her! Then, we talked with Joey's PT. They have talked with our developmental doc and feel it necessary to go ahead and fit him for the belly binder. This will help him hold his belly in and also help him be able to grow correctly (for instance his ribs are growing around his belly instead of in place where they belong) So... this should all help, but also help with his balance and coordination. So... all sounds positive. we'll see what he thinks of it when it comes. ha! =) Other than that... we had ordinary life tonight... dishes and laundry. Yeah! Don't forget, if you want to leave the kids a message, feel free to sign their guest books on their caring bridge pages. The links are to your left labeled Abigail and Joseph's story! Abby really loves this and one day, Joey will too! I'll print their pages to keep in their folders so he'll one day see it and enjoy reading it!! Night all!

I'm so proud!!!

Well, today, Jeff performed his first wedding! Absolute congrats to Melissa and Evan! The wedding was just beautiful and so exciting to watch. I'm a sucker for a wedding though. I just absolutely love to watch them! Honey, did you say you were going to dress that way for church tomorrow?? =)

We toured the uptown stuff today. Farmland had it's fall festival. Not to bad. There was some cute stuff to look at, but I mostly enjoyed visiting with friends.

Please continue to pray for Joey. He's still having his intestinal problems. We have heard a lot of people are praying! I got word the e-mail was sent to over 278 people (just from two individuals... so who knows how many some of you have forwarded and just not told me!) That's awesome! AND It's gone globally!!! There are people over seas now praying! Wahoo! That's great. Thank you for those people who support us so much. It means a lot! We can't tell you what it means!

Long days...

Well, this picture here... I TRULY wish I could have caught it on video. Joey has this thing, when he throws a tantrum, he STANDS on his head. Nope, I'm not kidding... head and feet... that's it! Could care less about anything... just gets mad and does it. Ha! If I did that, they'd have to call an ambulance to get me up. No kidding. It's really annoying when you are trying to get him to do something, but absolutely adorable at the same time. What a crack up he is! We are still rummaging through our emotions right now. A lot of questions, what if's, how too's... this sort of thing. But, over all, I think today is a bit brighter. We will trust God with this one to. If Joey faces this, than you know... it's meant to be what it is meant to be. We'll just trust God knows best. we are so thankful to you for your prayers!

Thanks to all who have been visiting Joseph's and Abigail's caring bridge pages. Today, I was reading them to Abby and she says "I want to read more stories with my name!" Too cute. She loves it. It is nice to have that personalized contact. Especially for Abby. She's my little social bug and well... being in isn't her idea of fun. Mommy isn't meant to be socialized with so much. =) Anyways... thanks to all for your prayers and support. If I didn't e-mail you back, remember my e-mail address has changed. Pfohl4@hotmail.com

Unfortunate change...

Alright... now I get razzed about how much I change my e-mail... THIS TIME IT ISN'T MY FAULT!!! Some how, yahoo has terminated my account. It said I broke the terms of service... not sure what happened there because I re-read it and well... i did't do all or any of those things... it's permanently gone. They said it can not be reinstated... so... you can now find me at

pfohl4@hotmail.com

Today's advice... PRINT YOUR ADDRESS BOOK! Have a great night!

sweet reminders...

A friend used this scripture in her blog posting tonight... It's exactly what I needed and I wanted to share...


When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through fire, you will not be burned; the flames will not set you ablaze."(Isaiah 43:2)

Unsure how to cope...

Today has been one of those days that when I got out of bed, I had that feeling it wasn't going to be good. Ever done that? I tried so hard to pray through it, but my heart just felt heavy from the get-go. Well, it sure was hard. We found out today that Joey isn't digesting as he should at all which means the possibility of a Jtube. A Jtube is an intestinal feeding tube that would bypass his tummy. This is frightening. Joey LOVES to eat so much and I can't even imagine telling him no. I'm more scared right now than I think I ever have been in my life. I have had all these mixed emotions hit me today. I just want to curl up and hold my kids as tight as I can. Please join us in praying for God's hand and wisdom in this. We just aren't sure what is going to happen and the best and worst flash QUICKLY through your mind. Thanks to all who support us. If you have a message for the kids, feel free to sign their guests books

www.caringbridge.org/visit/josephpfohl

www.caringbridge.org/visit/abigailpfohl

or you can post it here. It means so much to our family to hear from all of you!

The flipping continues...

Alright, well, we have had our fair share of flipping! Abby is really taking this business serious! So, Joey decided it must be pretty important... I thought that you all absolutely had to see this! Enjoy!!!!!!

On to a serious note! Abby is really doing well on her low carb diet. Today, we had our first outing to a fast food restaurant! I couldn't believe it, always before, she loved to ONLY eat the bun off of her cheeseburger. Well, we had a long talk explaining that the bread will make her tired and not feel good... her response "OK mommy, I want to be healthy." She ate more in one meal than she eats in a week! She ate a whole cheeseburger patty and part of my chili! Go girl! As for Bubby, we are waiting on a return call from the GI docs. They are looking into what could be causing him to have some digestive problems. He is passing whole foods in his stool which means that his body isn't digesting and using his foods. I know, that's gross, but you know... it's our life. Sorry! Please be praying for him. This is really scary. I know that God is able to protect him and heal him, but I know God also chooses what paths we will walk. So, I'm praying that God's hand will absolutely be in this and give us wisdom. It could be something simple clear up to something major. Whatever the case, we just want God's wisdom.

200th post....

I never thought when I started blogging that I would find myself having a 200th blog. So, in saying that, I'm really curious who all my readers are. I have had as few as 2-3 a day clear up to 20... so, leave me a comment below and show the faces of our readers. =)

Today has been an interesting day. Some days, we ahve awesome days and all is good then other days, we don't deal so well with the thought of things. I've been really trying to dig in and do a bit more research on mito. Mito is one of those areas, you can't emotionally sit and read it all in one sitting... so I read some, then I dig and save some new and then later, read again. There are tons of places to read. Here recently, I have been reading a lot about other children. I have found amazing amounts of caringbridge pages and even web pages of families who face mito. Reading other entries make me feel not so alone. Mito isn't one of those "Hey my kid has that" illnesses. So, often loneliness sets in and you wonder why. Abby had a pretty good day today. She was very fussy which tells me she isn't feeling the greatest, but she hangs in there. She enjoyed playing out in the sand box today. The temp was PERFECT for them to be outside. Then Joey, well, he continues to struggle with his intestinal stuff. We have learned that he has Cdiff. He's also starting to not digest his food. So, we have to call the doc on Monday to find out what we need to do.

In case I haven't mentioned it... to your left, I have added a new section. You can click on the links and read Abigail and Joseph's personal stories. Feel free to leave a comment there. I read them to the kids when people sign the guest book. They really enjoy it! Before long, I'll have our website up and running too. God bless!

Big day...

Well, we had a long day today! Mamaw and papaw are even tired! They came over bright and early this morning to watch the kids so I could go help with Angel food at our church. (My parents are not morning people... so they love their babies to do this!). Then, we were off to fire prevention today. Joey doesn't tolerate a lot of loud noise and chaos... so I tried with abby. we watched less than half before she turned and said "I need to go in mommy this is too loud." We tried to go to the activities today but between the bees and the people smoking, we had to leave. The kids absolutely can not be around smoke, it makes every thing worse for them. Anyways... we ended up walking around the mall for a bit. Found a cute little Dora necklace to give to abby for her birthday. I'm sure she will be thrilled! I even kept it a surprise! Abby slept like 3 1/2 hrs. today... so it was easy to accomplish since she was out like a light. Abby's been really tired and Joey has been a bit weak, but other than that... things have gone pretty well so far this weekend. Always good news! =)

Roller coaster rides...

Some days I truly feel like living with Mito is like living on a roller coaster ride. Wow! Abby has had a rough couple of days with fatigue and well, when fatigue hits... BEHAVIOUR hits too... not always positive behaviour (all you parents know what I'm getting at). The infamious answer when people see my children is "Wow,they look great." A bad day to us isn't always notable because a bad day could mean that we are wired and unable to control ourselves. I asked Abby tonight why she has been acting up. We always have a "talk" to close a day that hasn't been good so we can focus on trying better the next. She says to me "Mommy, I tired. I upset because I tired." My heart broke at that tonight. She feels this and she knows it is happening. She got hystarical because her hands started shaking, but this too is caused by fatigue and over stimulous. I have no idea what the future holds for my kiddos, but I know one thing, I will love them with every thing I've got! We did get a call from Riley today. Joey tested positive for Cdiff in one of his tests. Just came back. For any of you who came to visit THIS IS NOT contagious unless you actually come in physical contact with his dirty diaper. So fear not! =) They are going to be starting him on some meds to try to rid his body of this. I do believe it is like the 5th time he's been on this med. His lactate (acidic levels) were within normal range, but his liver counts were slightly elevated (typical of mito to cause.)

Off to bed for a busy day tomorrow... I apologize, I think reading this blog tonight is also like being on a roller coaster! Sleep! I need sweat sleep!!!!

Just to make you smile...

This is the cackle that we hear every day that totally and completely makes us smile. It doens't matter the day we have had... this smile brings light to the whole house!!!! Just thought I'd share with you! Have a great night all! =)

Happy birthday day dear honey!

Yeppers! Today is it... THE BIG DAY... my wonderful Husband Jeff has turned yet another year older! Just wanted to say I love you honey! Happy birthday! You are an awesome husband and a wonderful father! Thank you for that! I am so thankful that you are in my life!!

Oh, and happy 92nd bday to granny and happy birthday to Dora too!!! Man, popular day!

Facing giants...

Today was a hard day to face. We went to Riley for Joey's recheck. That actually went well, however, it was the discussion concerning Abby. Abby's been having the muscle shakiness, the fatigue and the knee pain. We addressed that today and well... apparently it is too be expected. I guess I just don't think of it that much and well, we are still learning everything. There is nothing that can be done. They said the winter would make the pain worse. So, I'm not looking forward to this winter. My heart sank today. They said we need to start helping them to realize that they aren't going to be able to keep up with other kids. That's so hard to tell them. I want them to be achievers in their own way and as much as possible. I don't want them to feel as though they are "different" or "disabled." I want them to be able to put their minds to something and do their best. YES I know there are going to be things that they can't do... so I'm not living in a fantasy world. I'm living in a "I don't want them to give into this and live with it controlling their lives". Anyways... it's just all frightening. Today has been a questioning day for me. That underlying question in the back of my mind of "why my kids?" I know God has a purpose in every thing and I know that He says He won't give us more than we can handle, but some days, that is EXTREMELY hard to walk that out. I am sure that God will give us wisdom and He will show us the best way to raise and teach them in their thought processes. With God, all things work together for the good of those who love Him! So, Love ya God! =)

Rollin' rollin' rollin'...

Well, today, my daughter learned to do a summer salt. I'm sorry to disappoint you all... I couldn't provide footage of daddy demonstrating to Abby how to do one. It was a sight to behold! That's why you NEVER EVER let the batteries go dead on your digital! =) Oh it was TRULY exciting! Abby enjoyed it. She kept yelling "I'm rolling daddy!" Too adorable. Today, we talked with a genetic counselor at Riley about some concerns we are having with Abby (knee pain, muscles shaking, muscle fatigue) They have pushed her next appointment up sooner. The exciting news is that the mito clinic is open now at Riley! I was OVER JOYED to hear that. It will be easier to get ahold of doctors now. Anyways, Abby will be seen Oct. 29th. to decide what we can do or may need to do to help her. We go to Riley tomorrow for bubby to see his metabolic doc. This will be the very first time we have actually made it to clinic. He usually has to come see us in house because Joey's been admitted for one reason or another. I'll be glad to see him as an out patient. We also get to go to the safe escape store in Riley tomorrow. This is a great thing for people who have children with special needs. You can visit at www.escapesafe.org This will be our first time going, but I hear that they have wonderful things to aid in many aspects at home. It will be interesting to walk through the process. Anyways, we'll see what the day brings. We were supposed to meet a couple of mom's who have children with mito as well, but Abby sounds junky. I think it is allergies... but being a mom who "dreads" to hear runny noses... we decided it best to meet another time. More updates tomorrow!

Does any one have a heating pad?

Ok, my moving is done for the night. Not only that, but I made time to go into Ryan's and have Jeff's Birthday dinner (WEDNESDAY IS HIS BIRTHDAY!) with his family. My tummy hurts! I don't think Ryan's knows how to cook anything healthy... even the lettuce looked like it had additives! Amazing what happens when you really get into focusing on eating healthy and you realize just what is in EVERY THING... Kind of makes me not want to eat actually. Anyways, tomorrow... I get to start back up my walking with my friend Donna. I'm very excited. 745 comes early though tomorrow. I best get my beauty sleep! Have a great night to all!

Cleaning again!!!!

I don't understand this! How does a house get so dirty??? We are rearranging again. We came back from Riley and well... I don't like the way things look... mom got me in the fever yesterday. we have our "school" room in our dining room right now. So, that is going in the kids room. That will help MASSIVELY! School papers have to be stacked, glue moved, paint scrubbed EVERY time we have to eat... so that's my mission today. I will be glad to get it done. The kids room is a mess... so we are going there first. I'm listening to our service as I work. Unfortunately, Abby is now sick. =( Poor girl. She sounds like a squeaky toy today when she talks. Hopefully this will be a quick one and not require much. Well, back to my rearranging! Happy Sunday to all!

Don't do it mommy!!!!

I am not sure but what a lot people aren't informed and realizing that Abby has been officially diagnosed with Mitochondrial Myopathy like her brother. Anyways, one thing that is vital is nutrition for the kids. It helps with the energy that Mitochondria produce and helps keep their bodies balanced... We haven't totally removed sugar yet from Abby's diet, however, after seeing some of the affects of "no sugar" days in comparison to "sugar" days, we are removing it promptly and she is also going to be going on Joey's diet in hopes to stop some of the drastic ups and downs that we are seeing (one day some what normal to the next day being weak, exhuasted and shakey). Well, we were telling mamaw and papaw tonight that we are stopping the sugar. We all lost it laughing because Abby looks up... slaps her hand over mouth and exclaims... OH NO! =) What a doll!!!!

Moving day....

Nope, we didn't move! We just helped my mom and dad rearrange (now you know where I get it from!) This kids loved racing around upstairs and jumping on the bed. Papaw was the ring leader! =) We even got to see Uncle Jeff and my cousin Tyler. It was a great day... and dad made some great burgers! =) Mmm... topped with Sonny's BBQ sauce! Ok, now that all of our mouths are watering... it has been an enjoyable weekend. Just doing whatever. I got to hop on into the coffee shop up town today where my friend donna works. It's beautiful! I enjoyed stopping in. Farmland was having ther anual chili cook off... IT SMELLED tempting! But, I was a good girl and skipped out so we could move furniture. =) On a cute note, I was tucking Abby into bed and she asked if papaw was here. I told her no, that he's at home getting ready for bed himself. In a sweet voice, she got very concerned and said "Upstairs? Where we put their bed today? But mommy, they can't sleep up there together, there are no pillows!" So, we called mamaw to assure her that they have pillows and then... "What about blankets?" Ha! She's so cute. I tell you, that girl would worry about any body over herself... well, on most occasions. =) She is two ya know!

Yippee!!!!!!!!!!

I am very proud of myself! We were at Riley and I STILL LOT 1 LB!!!! I know it isn't much, but it was stressful... I even ate my favorite Maple Nut Goodies and I still lost 1 lb! I actually have had to do some work. I had gained some since the announcement of the wheel chairs (I tend to be a stress eater...) So, I had to loose all that and then some. =) I am officially at 14 lbs. on my weightloss! Pat on the back! Go me! =) Ok, enough... can you tell I'm excited????

Fun Times!!!!

Well, I got a last minute phone call from a friend today saying she was taking her kids to the McDonald's in Union City... Wante us to go... so we DASHED to get ready. I had decided this morning I was going NO WHERE, so I took my shower and put on clean jammies! Yep, I sure did! So, I had to dash to get ready. We made it! We had a lot of fun. Abby squeeled with excitement as we pulled in and Joey, well, he had his piggy nose on or something because man... the boy ate two cheeseburger patties (mind you with out the bun) and then like a 1/2 of a small order of fries! Joey LOVES McDonalds. The kids were so cute today and absolutely enjoyed playing with their friends. After this, we popped over to my parents house for some fun. Joey fell asleep behind papaw's chair and Abby... she enjoyed her usual round of cooking shows. I have never seen a child like cooking shows so much! Cracks me up! We ended our day with making Joey's low carb cookies... butter and cream cheese... mmm mmm good! They aren't that bad. Kind of dry, but still tasty! Joey loves them and Abby... well, she loves anything that is called a cookie! So, I'd say, we had a good day. =) Tomorrow, we have the town's chili cook off and then we are off to mom and dad's house to help move furniture and eat some lunch... then, we cook supper for them after they go to Saturday night service. Busy times but always enjoyable! Oh and by the way... Mommy did not go in the tubes on the play land at McDonalds! I think I would have got wedged! =)

Resurfacing problems...

Well, we have been trying this new "more carb" diet. There is a name for every diet! Joey's body is handling it well in that his intestinal problems are not so bad, however, we are now going the other way. Neither direction is pleasant! Poor guy! However, we have seen something much worse today. Joey has begun to "space" out. He is known for having "silent" seizures (starring spells). Today, he seemed to have "checked" out on us a few times. I don't know that they were actual seizures, but I would say it was pretty close if it wasn't. This was one concern with the diet change. So, we are back to square one. Joey had his usual low carb meal tonight. We are all joining him in hopes to help him along. He has tasted the other food now and WANTS it. You better believe this mommy can't bring herself to eat good stuff in front of him. On a positive note, we met our new primary care doc today (our other one had to move away). He seemed really nice. I think it will work out fine. Enough of my world... I'm crashing! Night all.

The return...

Well, we are home! we have never been more releaved to pull into our drive way. I tell you, this has been a long week. Joey is still on what is considered a "modified ketogenic diet", however, he does get to enjoy some extras here and there just to see if it helps with his intestinal stuff. So... I thought I'd sure with you a "Cheese cracker moment". Oh, he just thought it was wonderful! Poor guy! He now thinks he has been starved all of his life. Anyways, we are going to have one heart broke little guy if they decide tuesday to put him back on his stricter diet. Oh dear! Let me tell you! Tonight at supper, he was litterally trying to crawl across the table to taste every one's food! He's gotten a taste of flavors he's never had. Oh dear! We are all in trouble! Anyways... we are glad to be home. we are so tired we can't stand ourselves, however, the joy of home has helped us to push past that! =) Now all we need is some home cooked food and kick back and relax. No needles, no ouchies, no alarms, no nightly rounds to check in, no waking me to ask silly questions in the night!!!! Oh... HOME!!!!

an answer to prayer...

well, tonight, my daughter amazed me. she is very homesick. She is complaining of leg pain herself and really beginning to show her own fatigue. She started crying say she wanted to go home and well... when we explained bubby was doing better but not ready to go home yet, she marched right over, took his hand and announced she was going to pray. Her prayer went like this "Jesus Alive. I pray for bubby's diarrhea to go away. I pray you make him better. I want to go home together. Amen." well, Bubby giggled and hugged his sister and then.... HE PLAYED FOR AN HOUR STRAIGHT! It was awesome! I tell you, that child has a serious gift of prayer! He was climbing, running, pulling things out of the cabinets, laughing, waving at people out the window of his room... JUST AWESOME! So... when the bible says that a little child will lead.... well, God isn't kidding! praise God for answered prayer! we'll see what this brings for tomorrow. Night all!

day 5 and holding...

Well, we are still at Riley right now. Joey has continued to show steps of improvement. I tell you, we have been really worried about him. He is gaining strength, beginning to eat well and even starting to play a bit more. Our goal is to possibly stop the IV fluids tomorrow and then maybe go home on Thursday. Joey just is having moments when he's just not all there and seems to not really be observant of what is going on around him. That is concerning still to the doc, so he's wanting to see that improve. We have been encouraged by the e-mails and the phone calls. Thank you! Hopefully we will be back home soon! We are all very tired.

What Joey is facing...

I don't have a whole lot of time, but I will try to quickly explain life right now. Joey does not have the viral infection as we were lead to believe. The doc that told us that was under the assumption that it was viral, he had never met joey before. I regular doc was in today. he basically explained this is all being caused by Mito. Joey has problems with his tummy and intestines functioning the way that they are supposed to. Basically, they are wanting to fail. Anyways, the plan is to take him off the lower carb diet and see how his body responds. This could cause many things to happen from seizures to his acid levels becoming toxic in his blood again. However, they feel if they get as much fat and harder to digest foods out of his system, they would be able to help slow some of this from happening... so we are giving it a whirl. there is a medication that can help with this, but they are not wanting to use it because Joey is too little. Usually, they give it to three yr. olds and above. They are hoping they can hold off until he is at least two. We met a little guy today in the elevator who has mito. He went through the same thing. He is two and his intestines have failed him already and so he is unable to eat by any means at all if it deals with his tummy. He is fed through a pic line. We are so praying this is not in Joey's future, but it is the reality of what is going on right now. Please hold joey up. Thank you so much!