Bath time excitement!!!!

For a long time, Joey has had to use a specialized bath seat in order to remaining sitting in water. Daddy and I have been thinking about letting him try a bath with out it to see how he does. I was nervous, but tonight, Joey initiated it... he didn't want the seat. He climbed right in with out... So... what you are about to see with me is a HUGE step in development and an incredible answer to prayer!!!!!

Joey in his bath seat

Don't tell me I can't do it!!!! I'll show you I can!!!!!

Whew... Mom, I can lay down now!!!! WOW!
Here I come!!! Watch out!!!!
Aaaaahhhh, that was so much fun!!!!!!!!!!!!!!

To those of you who pray for our kids... this brought the happiest tears to my eyes!!!! Thank you for loving our family and for being a part... I needed this right now in the midst of all of Joey's struggles!!! Thanks all!

The final day...

It is FINISHED!!!!!!!!!!!!!!! The house is done, we are packed thanks to Aunt Christi's help this after noon!!!! All I have to do is vaccuum and wipe down things and we are through.... Oh, then comes the unpacking! ha! Bummer. Always some thing! We have a Riley trip for Joey tomorrow. He has a swallow study scheduled. We are praying that he will not have to have thickened feeds any more! That would be AWESOME!!! Joey has been having a rough time. Riley is working on changing his meds because his not doing well neurologically. Seizures have just gotten the best of him. So, please say a prayer for him over the next few weeks! Night all!

Moving right along....

Well, we have had some MAJOR progress today thanks to Aunt Rena and Logan coming over. The kids were busy and Aunt Rena did all kinds of work while I boxed and boxed myself into a corner!!! So, um... if you can find me... I'd appreciate it! :) I'm so excited at our progress today! Until tomorrow my friends!!!! Oh, by the way... this was once my dining room!!!!

2 more days...

I'm about NUTS!!!!!!!!!!!! We have two more days of packing... today and tomorrow... Wednesday, we'll be at riley because Joey has a swallow study that day... so oh my!!!! The boy better improve by then though or they may keep him. :( He's had a rough couple of days. He seems better today. he's been up and about some. So, we'll see. Hope you all have a wonderful Monday. My sister-n-law, Rena, is coming to help today with her little guy Logan. The kids always love playing with their cousin so that should be freeing for me to pack like crazy! Thursday is coming quickly! If you are interested in helping... let us know! :)

obedience vs. fear...

It has been awhile since I have gotten to listen to a sermon. We have made our way back to church and I am VERY busy with the kids while there. Miss Abby has transitioned well, but Joey not so well. He has trouble with lots of noise and things going on around him. probably related to his seizure disorder... but this morning, we stayed home because of life being in chaos itself with our move. I think it was a God thing though because I got to listen to the WHOLE sermon today. I was convicted... I don't know at all what God's plan is for my children. I don't know if it is healing, if it sustaining or if it is what every parent would never want to face. I have no idea because God didn't promise me or any one tomorrow... but HE DID ask me to trust Him for today. The other night I posted something that I soon after removed. God has been laying things on my heart. We received the news that we may never have a complete diagnosis and until today, I didn't realize how much that was controlling me. My eyes left the source of life and stared straight in the face of uncertainty. I clutched it and I held on tight... because of that, I have missed something... I have missed that God has an ultimate plan. My life is a question mark every day because we never know whether we will be racing to the ER with a sick child or whether it will be a "normal" day for us... and then... I missed that God has a purpose in all of this. We affect every life we cross, we have the opportunity to worship HIM in the good and the bad... allowing myself to grasp our "non-diagnosis" has allowed me to fall prey in forgetting to worship HIM. He loves me and He loves my children more than I ever could. He knows their every tomorrow and He WILL give us the grace that we need for each moment. Today's moment... there are things God is asking of me and because of my fear of Mito... because of my fear of how long will I get to hold my babies... my fear of how long will they be mine... my fear of what tomorrow holds... I have lost sight of the amazing and strong hand before me waiting to hold me tight, waiting to walk me into my families destiny. I know there are things God called Jeff and I too.. I know there are things that he has not revoked... He has not forgotten because the Call of God is irrevocable... it is whether or not we have the faith to lay down what is before us and trust Him to take hold of our lives and have us at the place He desires and needs us to be... Mito is not our destiny... I don't know what tomorrow holds, but I know today holds the truth that God is in control, God has called us and set us a part and I don't know what that call means in light of my kids illness, but I know God is never changing and so today, I throw my hands up and I cry out to God that He will forgive me and He will carry me forward and I will be able to trust for every moment that He is in control and I can live in faith and obedience and do what God has so strongly placed on my heart...

Long week...

Again, we are at the close of the day... my body is screaming for some sleep...so I'm posting quickly. It has been a long hard week on the kids. Joey started last week with having had 12+ seizures, then all the appointments, the packing, etc... we have opted to take tomorrow as a day of rest for the kids. WE have appointments this week as well as the move. Joey is not digesting food again... which tells us his body is COMPLETELY distressed right now. So, we will be resting together at home. So, for any of you readers who do not get to go out... join me online live as I watch the service from home. Hope all of you have a GREAT day tomorrow!

4 more days to the big move!!!!

So, I need this sign posted on my front door. With 4 more days to go, we have been tearing into things we didn't even know were there! ha! Our house is a disaster of boxes and things being moved around and resituated... abby was very upset with mommy... we no longer have a dining room... our table is officially in the living room and the dining room has become the "to be moved" room. Oh what can I say? WE can live with anything for 4 days, right??? Hope you all have a wonderful Saturday! Mine is filled with stiff bones, soar muscles and a grouchy 3 year old who doesn't want anything moved from its place and a 21 month old who looks at me like "I could care less mom." Ha! What a combo... Jeff, well, he's just Jeff. Whatever works... :) See some of you at church tomorrow!

At the close of the day...

Down to seven days! The kids had a good day... I'm still up because Joey is still up... Daddy is trying now... He's been doing nothing but crying. So restless... I wish I could take this on for him....

much fun...

Tonight, Our growth group came over for a fun night. We started the evening with a cook out of good ol' hamburger and hot dogs and finished with a camp fire and Yummy s'mores. It was so much fun! My favorite part was listening to miss Abby and Mr. Joey laugh. Joey found himself amused squirting himself in the face with a spray bottle/fan combo... goofy boy... and Abby enjoyed chasing Dora and Toby around the yard and all over the swing set. She will miss that when we move. We'll have to look into get a swing set of our own eventually. So, if you know of any one looking for a home for one... here is the place to tell us your price. :) It was a GREAT evening. We had a great time... Oh, I forgot... we can walk across the yard to the church play ground! Ha! OK, so it would still be nice to have a play area of our own... So, I suppose I am still in the market! I'm taking my old bones to bed night! Night all!

New appreciation....

So, have you stopped to smell the dandelions today? I tell you, I used to think these things were such a bother, but now, Abby loves them! She thinks they are beautiful! Today, we were driving to therapy. Abby says "Mommy, those flowers are just so beautiful. I think it is nice that Jesus made those just for us." So, have you taken time to look at the beauty of spring and realized that Jesus made that just for you because he loved you?

8 days and continuing to count...

We got to have some out side time yesterday! Joey was feeling better by late afternoon. The kids had painted flower pots with me the other day... so daddy helped them plant their flowers. Bubby wanted nothing to do with touching it, however, he picked out the tallest marigold he could find for daddy to plant. Miss Abby picked out very pretty lavender flowers. They also enjoyed playing on the little slide too. It was a great evening! Joey slept through the night last night and is doing REALLY well this morning, so I'm looking forward to what we can tackle today. I'm hoping the rain stays away because if so, some friends are coming over for a fire tonight and a cook out! :) Yum! Have a great Wednesday every one!

9 days... and counting!

Well, we are down to 9 days until we move. I'd like to say that today is going to be full of energy and loads of things done... however, Joey has had an awful night. Jeff and I were up most of the night with him. He has had confirmed seizures over the weekend... like 12 of them and last night, he was just miserable. Couldn't sleep and couldn't rest even. We didn't see any seizures last night, but he just was not himself. So, please pray for Joey today. We have a call in to our mito doc again to see what is going to take place. Please pray for wisdom on our part as we decide what is best. They could go any direction with this... so we are patiently waiting with our eyes half open. Thanks for the prayers!

10 more days!!!!!!

Oh my goodness! Time is flying so quickly. 10 more days! Reed came today to measure our dryer and make sure he had proper ventilition for it. They are laying carpet very soon! Yeah!!!! It is going to be exciting to be there and settled. I am really looking forward to it! Now to just get finished here. Today, we have had a day of rest for the kids. I am starting to plan nothing on Mondays because the kids put there all into being at church which means monday, they are TOAST! Both of them for the most part have just layed around today. Abby is very whiney today which tells me she isn't feeling well. So... rest for them and work for mommy! Before I get back to it though, Winchester Walmart is doing a fund raiser for Riley. Home interiors has partnered with them and is allowing half of every purchase to go to Riley. so, below is listed what you are able to purchase. I need the order and the money by wednesday if you would like to participate so my sister can turn them in on Thursday morning.... here is the list...

Home-style Candle Jars $7.00
Baked Apple, Hawaiian delight, Raisin bread, chocolate iced cookies, apple nut muffins, pink grapefruit, juicy watermelon berry orchard, banana cream pie, spiced orange

Designer candle jar $12.00
Baked apple pie, delicate breeze, moonlight tuberose, fresh cotton, cranberry orange, lilac bouquet, mandarin orange, sweet vanilla, honey dew, pineapple & Mango

fragrance charms $10.00
Country casual fragrance, baked apple pie, sweet vanilla, fresh gardenia, island pineapple

lotions or shower gel $9.00
sugared citrus, almond, lavender

room fresheners, home or on the go, $10.00
linen fresh, mango cooler, green apple, jasmine vanilla

All checks need to be made to Tammy sells. These are also guaranteed by mothers day.

Compassion Sunday...

Today we had compassion Sunday at church. I was so thankful to be there. Joey is having trouble with being anxious about the nursery. He really needs structure to feel secure. I think a lot of his medical issues cause that. I wasn't too sure about going in today. I didn't know a lot about compassion... I didn't really get to hear much of it as I was busy chasing Joey around. However, one phrase rang out in my mind and continued to the rest of the day... "Please save my child." This was a phrase that Shaun Groves shared today in service. He said mom's were begging him when he was there to save their child/children. I brushed it off as I went right back to chasing Joey... and actually, at this time, I was digging a ping pong ball out of the gum ball machine with a butter knife... so YES I was a bit distracted! Jeff said right after church he wanted us to pick a child. So, we did... I was kind of in that "Oh sure... why not" mode... I hate to confess that, but I just hadn't arrived yet... through lunch, I continued to hear that phrase ring in my head and I began thinking about all the sick children... then my heart started to break. I, by no means, am suffering from poverty, or suffering from lack of good medical care... however, I can relate to the cries of those mothers hearts! I feel helpless to help my children every day, I have no where to turn, no way to take their pain away and ABSOLUTELY no way of explaining to them why mommy can't make life "normal" and I broke. Jeff asked me on the way home what I was thinking and I started to sob. Here are all these little faces and I know that pain of helplessness... I sobbed and told him that I so much wish I could take on every child! Here is an opportunity that we have to bring hope to these families, medical care, healthy food... JESUS!!!! We have an opportunity to love them and give them a life. I couldn't face the families that Shaun faces... my heart couldn't take it. However, I can help! I can give. I pray if any of you were there today, if you are still waivering in your decision... ACT!!! God wants us to reach out... God wants us to change lives... here is an opportunity. There is hope and answers for these families and I pray that we don't clutch our own so much that we can't give them that $32 LIFE CHANGING dollars! How honoring it is to share in today and to help a young person who not only needs this money to improve life, but needs the light of Jesus shown bright for them!

The close of the day...

The kids had a great time at mamaw and papaw's house. This picture is actually from the other day, but I thought it was worth showing tonight! IT was nice to get out and eat dinner some where other than this house. I feel like I'm here or at the doctor almost every day! Joey is doing fine tonight. I'm so thankful. I pray we ALL get some sleep tonight. Hope you all have a great evening! See you at church in the morning but hey, if you can't make it, you can always watch Live. Sleep tight!

12 days....

Well, 12 days remain... I'd like to say that I'm up and moving and donig great and wonderful things on packing!!!

But, I'm not... I was up all night with the kids. Joey was having a really bad night. I think he had some seizure activity and then mixed with some pain. It was a strange night that I never want him to go through again! poor guy! Just miserable... So today... I'm miserable! Very tired!!! We are visiting grandparents this afternoon, so I think the packing for today is shot! Oh well... always 11 more days to follow! :) Have a great cloudy saturday every one! I sure hope that the sun comes back out soon!

The close of day 13...

Well, we didn't get as much as we had hoped done on the house... but it was productive none the less! I had a doc appointment this morning... then we stopped at my brother's house to drop off a toy box for their son (we had an extra) and the kids all enjoyed playing together on Logan's new swing set. Joey and Abby enjoyed their first ride on the ATV with uncle Mike. (I'll post pics asap). Then we were off to the grocery... It took an abnormally long time! Let me tell you! The kids picked out their flowers to go in the pots that we bought ages ago! Procrastinating for me for sure! Then home... aaahhh... begins the packing! Whille daddy grilled our chops, the kids and I painted our flower pots... I know hard work packing, right!?!?!? However, tonight, I got the kitchen down to the bare bones tonight... all that is left is the have to stuff and even some of that is already in a box in its cabinet! So... pull the box and go. :) Jeff is the man!!! He tackled the laundry and got it near done while letting the kids tackle him in between loads to relieve me of being tackled for every thing in sight from them. So, it was a good day!!! Get some sleep and look to day 12... night all!

Here begins the count down....

The time is drawing closer... we OFFICIALLY move in 13 days! The kids are really excited. It has been hard on them. They haven't been able to go upstairs and Joey struggles to not fall every time he goes in and out of the rooms that have a single step. Miss Abby is excited stating "We are moving to a house with lots of rooms." There really isn't any more rooms there than there is here... however, she can get to all the rooms so it probably feels amazing to her! We are excited. I have been working as much as possible through the evenings when Jeff is home. He and I tag team the kids and the packing. So, time is drawing near!!! I am very excited! I'll have to get some pics of my house right now... it is a tragedy!!! Boxes and stuff EVERY WHERE!!! Have a great day every one!

Sweet Success...

I am ever so proud of myself!!!! I have been working out at Curves in Winchester with my sister. We have been going for 2 months now. I am very excited about the accountibility. They weigh and measure you monthly. Well, today was my weigh in and measure day. This month, I lost 2 inches in my waist alone!!! Yeah!!!! I was so stinking excited!!!! I'm really pumped about it. I have found a diet that is working for me... I feel good, I'm beginning to loose weight AND it is working with my life style. Being at a hospital half of your life (so it feels) does a number on dieting! So, I'm excited to see how this goes for me! I'll update monthly! Yeah!!! Night all.

mercy...

Well, today is a new day and I'm thankful for God's Mercies. Thank you for those of you who e-mailed with love and concern. We are thankful for those who stand around us and pray. I tell you, Jeff and I talked for a long time last night. We are at a point we need time to grieve, but also, today is a new day and we need to pick up our pieces and move forward. This biopsy DOES NOT change what God's plan is. It does not change our faith in God... it simply hit us in an area that is sensitive and as humans/parents we were saddened and hurt. Every day we walk in faith and we believe that God is in control. mito is bigger than we are and it is bigger than the medical field as there is NOTHING the doctors can do to stop it or to tell us what is causing it at this point. God has done so much already... so many miracles and we have NOT forgotten that! He continues every day to do miracles on their behalf and I know that He has a mighty plan for their little lives however long He chooses to let it be. We will continue to move forward and we will continue to trust. We have to rely on and look to the doctors for advice and what to do every day because we don't fully understand mito and we don't always know what every thing means that happens in their little bodies, however, we do trust and pray every day to make sure that listening to the doctors word is the right thing for our kids. There have been times we have had to put our foot down and refuse things and there have been times that there is uncertainty and we move forward believing that God is going to protect them. So, thank you for your prayers. As my blog is titled... one day at a time.. today is fresh and new. We appreciate all of you and thank you for allowing us to vent.

Mixed up emotions...

I don't know what to think or feel tonight. Abby's muscle biopsy came back. For those of you newer to this sight or following our family, Abby had a biospy done Dec. 5th that was supposedly going to give us a deffinitive diagnosis as to which form of mitochondrial disease the kids have. This would help in so many ways in their care and treatment. Today they told us, her biopsy came back normal. I started to get excited until the words came "We are so sorry. we don't like to tell parents this. your child has mito but is in that 1/3 of children who may never know what form they have." My heart broke. When she told me this, I had flash backs of standing at Joey's bed side in the hopsital and getting those first words of Mito and that it could take your child's life. i remember her looking in me in the eyes saying "some kids we never can find it and we can't garuntee anything either way. It just is better when we know because we can expect what we typically see." I had in my heart that we were going to know and now we know nothing. Many have not understood this today. We have had comments across the board. Our hearts ache. My baby girl went through something that has left her emotionally not the same and we know NOTHING!!! It hurts so much. Not to mention, this makes her treatment more difficult because we now have NO CLUE what direction this COULD go or even which parent it came from. I asked the lady today what this means. She said that we could move forward with some MT DNA sequencing but that insurance probably would not cover it so we would have to come up with $4,000 to do it. There is no way... I don't know where we'd get that kind of money. The other option would be to pack Joey (Because he is the more severe of our two, he'd be apt to give a better sample) up and fly him to Atlanta to do a fresh muscle biopsy... but AGAIN they said that it would likely say the same thing. We know from Joey's that they have a form of a myopathy but the rest of the biospy wasn't usuable because there wasn't enough tissue. If we could get a diagnosis from one, we'd have it for both because they are siblings it would be the same. So, I just don't know. I don't think I have ever felt this let down or dissappointed. I feel lost as well not knowing who to even begin to talk to. I talked with a couple of mito mom's today that was refreshing as they understood the upset and let down we are feeling. I just feel at a loss. As their mommy, I feel like it is my job to find out, my job to push, but also as their mommy, I can't take watching them go through one more thing. I'm tired, they are tired and it HURTS all of us. Not to mention, putting either of them under is so frightening because they don't handle it well. I just wish I had the answers. This is one of those days I wish God gave me explicit directions as to what to do next. Do I stand back and wait to see what He does, or do I push forward and put them through more. Please pray for all of us tonight. We love you all. Thank you for listening.

Crazy Day...

Well, I would like to say today has been wonderful... but not the case! Joey was up almost all night and miss Abby followed suit! Lovely! Daddy took the first half of the watch and I covered the last... but wow! We are both walking zombies today! Miss Abby was running a temp this morning but not ill symptoms. Jeff and i are coming to realize that when Abby gets too tired, she has even more problems regulating her body temp... so my guess is, that is what happened. She said that class made her very tired yesterday. So, I guess she meant it! Joey is sick tonight. Full of gunk and running a fever. Should be yet another long night! If any one comes knocking tomorrow, forgive me if I'm asleep in a corner and don't hear you! The packing is actually coming along, but not as quickly as I would like for it to. it seems there is just stuff EVERY WHERE!!! Please pray for that to move along though. We have about a week and a half until we move! Enough of my ramblings. I'm going to go do Joey's meds and try to sleep for a bit! Night all!

Entirely thankful...

Well, today we went back to church. I must confess, I was very nervous. Some times, you never know how people will recieve us. We get a lot of "staring" in public with the chairs, the extra things we have to carry, the difference in life and the things we have to do to get buy... etc etc.. but today, it went really well. I was so relieved as I walked through the door and was greeted with hugs and welcomes. I had myself fully prepared for everyone to ask about the kids and I was very blessed by the amount of people who said "And how are you mom?" Refreshing! So, I want to say a HUGE thank you to my friends at FFC for the love that you show for our family. It was such a wonderful reminder of how much you all care and to hear so many of you who were up to date on life! That means the world that you take time to know what is going on in our lives! So, THANK YOU!!!! We will be ever grateful for our church home! We love you all!

Life is chaos....

Well, I have to say... this is the kind of stacks you see all over my house right now... I have felt a bit over whelmed with the idea of moving in two weeks and I am NO WHERE near ready. Yep, it is true. Life hasn't slowed and so packing has taken the back burner. So has my blogging obviously. My dear husband is beating me in blogging entries now a days! What can I say?? Things are going fairly well right now. Joey is nearing 4 months at home... shhh!!!! Don't remind him! =) This is the longest ever! so that is very exciting. He's had much exciting going on here lately. You can view his CB to see what has been going on with him. Miss Abby is getting so big! She is loving the idea of moving. She tells every one that she is going to house with lots of rooms! Silly girl! It is the same amount of rooms, they will just be able to get to them all because they will be on one floor. You can check her CB for more details on life with Abby! Oh, for any one who helps on moving day... miss Abby has been labeling all the boxes... good luck translating. She only makes A, X, O, & T... so LUCK TO YOU ALL! Hope every one has a wonderful weekend. We are going to try to get back to church... flu season seems to be over! yeah!! We have had release to experience a bit more life. Hope to see you all there! Don't forget you can watch if you can't make it! Have a great night all!

Spring has sprung!!!!

We had so much fun today in the weather. I thought we weren't going to have a good day because bubby was VERY tired today... but he snapped out of it after a LONG nap. Good job buddy! We got the kids new wheel chairs out and walked up to the grocery.... after getting a few things, I decided it would be fun to visit the GREAT BIG (not so much) park of Farmland. The kids were thrilled! It was hard to watch them tire and struggle, but so GREAT to watch them giggle and have a ball! The favorite was the curly slide. So much fun! Joey's hair was sticking EVERY where from static and Abby's but was a big slab of mud from landing on the ground! To hilarious!!! I think she left prints in the mud! Ha! It was so good to get out and just enjoy the day. Our packing is coming along SLOWLY. We did finish up the shed last night. So, it is ready to go and the junk is removed. We have a Riley trip tomorrow, so I'll be doing what I can through the day which isn't much than we leave town around 1 to head for Riley Joey sees the metabolic doc. I'm looking forward to our move. I think the change in the home set up will help both kids majorly! Hope all have had a wonderful weekend in this beautiful weather! (except for you Aleyna... the sun is coming your way! I promise!!!!)

Wedding bells are ringing....

Well, my sister is getting married! Ok, so most of you know that... no big surprise! Today though, we took a surprise trip to good ol' Dayton Ohio. I was so lost! No clue where I was going... good thing I was talegating Rena, my sister-n-law! We made it safely! Anyway, my sister found her bridesmade dresses yesterday while out shopping for her new glasses. She was so excited! They held them for her so we could all go back today and try them on. They were on sale and beautiful. Ok, so Jeff... he was just excited about the sale part... me... I liked the beauty aspect! =) Miss Abby now has a flower girl dress as well and it is just darling! There is even a little outfit just like it for a dolly. Christi's friend will be making Miss Abby a dolly to carry that day! Yeah! We had a lot of fun. I have to say though, it was wonderful outside today period! The kids so much enjoyed it! We got home and played outside. Miss Abby used her new side walk chalk and bubby enjoyed the sand box and slide. It was hilarious watching him go down the slide! Ha! I think he went on his back more than his butt! Too cute. Anyways... Hope you all had a wonderful Saturday. I know I did!

For a change...

You know, all day today, I have felt completely Lost! No idea what to do. We have NO appointments. For a week day, that is unusual. I can't remember the last time I was here all day and had no real place to be. It's nice, but confusing! So, I have gradually moved myself into doing some dishes and laundry. It's culture shock to my washer and dryer to be run during this time a day so I am trying to be VERY careful as not to throw them into shock! I have chatted with Cai for a while during her packing/cleaning/moving process. Other than that, I have just enjoyed my kids! So wonderful!