Here's life from the last several days!

we started with our sleep study on Friday. If any of you know Abby, the look in her eyes will make you cry!

This is Bubby waiting on sissy in surgery. He was watching Jack's big music show on the DVD player on Aunt Christi's lap! =)

Then came the surgery. This is Abby just out of recovery.

Leaving Riley after having her endoscopy, Extended PH probe (note the reason for the arm splints and tape on the face) and the muscle biopsy.

recovering at the motel after surgery watching Dora Re-runs! =)

My little skeeter...

well, my little skeeter bug faces surgery today. I'm not sure why, but I'm just a mess... ok, I am sure why... It's scary for a mito kid to go under... it takes a lot of energy to bounce back and she hasn't had much energy the last week. jeff is at peace though... so that always feels comforting. I haven't been able to sleep but an hour or two tonight. I so much wish I could raise more awareness of what mito is, the affect and the SERIOUS NEED for a cure. As a mommy, I feel helpless within myself as I watch my babies suffer. They look so normal and at times, they act normal... but the painful times are when you watch them suffer at home because they did what "normal kids do" They can't control their mouths, they have trouble with muscle pain, weakness and tremors, they cry because it hurts to move, they some times don't want touched because it hurts to feel... that's the side many DON'T see. I try so hard to protect them, but I just wish they could run free and feel normal. Play and not worry about the after affects. Anyways, I'm really struggling right now. I think it is all just because life has taken some scarry turns this week that have been hard to swallow, but we will make it through this hurdle and trust God has a reason and he's with us. Some days, it's harder to focus on that then others... but today... I'm just clinging to him and crying out for him to hold my baby. we'll update when surgery is over. You can find more at www.caringbridge.org/visit/abigailpfohl I am keeping things updated there more. Talk to you all later.

It's Christmas time...

I love this time of year. The snow (when I can drive in it), the shopping fun, the new things on the shelves, the giving, the carols, the Christmas music on the radio, the memories we remember and the new ones we make! I just realized tonight that I hadn't posted any pictures of our Christmas tree yet. So, here it is! Abby drinking her Crystal Light posing for you and little mister Joey decorating Abby instead of the tree! =) The kids had a blast decorating and I enjoyed watching them... however, I was a bit flustered at how QUICKLY they wanted the decorations out and I couldn't unwrap them fast enough! I think the holidays have snuck up on me. But, life is busier right now than it has ever been. In the last three weeks, I have not had ONE day that I'm not on the phone with docs at Riley. It's been so frustrating and tiring. Today, I was back and forth with the outpatient surgery and GI for abby. She seems to be passing some blood in her stools and GI is thinking of adding another test to her already long list when she goes in for surgery on Wednesday at riley. Anyways, I am really struggling to figure out how to balance life. There is so much new that is going on that it's been hard even emotionally for me to catch up. My body and brain is moving forward because it has to but my heart is left behind still wondering what struck I think! Anyways, I would ask that you pray for me to figure out how to fit every thing in one day that has to be in. between rehab, MULITIPLE doctor appts. each week, meds, phone calls... I just am really not sure where to place things and in what order they need to come. I've become an awesome organizer, but in the last few weeks, even that has had a toll taken on it... I am just learning to make every thing mobile. we never know day to day when we'll be here or staying at Riley. So... more planning and more learning is my main goal! Night all!

I did it!!! I did it!!! I did it!!!!!!!!!!!!!!!!!!!!!!!!!!!

I totally did it!!!!! I have obtained loosing 20 lbs!!!!!! Ok, I have like oh... only like 154 more to go. =( But for today.. I'm excited I'm not saying 174!!!!! YEAH!!! I didn't start out measuring myself, but I did 2 mths. ago and over a 2 mth. time period... I've lost 9 total body inches!!! I'm so EXCITED! Ok, I thought that was worth the post! Hope you all have a GREAT night! I know I'm excited!

It has happened!!!!

Well, I kept seeing these at wal-mart wondering when the question would hit "mommy, can I have one of those?" Well, we took Abby shopping with her birthday money today from her party and it hit! She seen the oven and within seconds... "I want that! I don't want anything else!" So, it has arrived! It's plugged in and it has begun baking it's first back of cookies! I absolutely love cooking in the kitchen with Abby, but I never thought I'd see the day this would arrive so soon. She is absolutely ecstatic to have her own "oven". It's all she's talked about! Oh well. We are having fun regardless and she is sitting in a chair patiently waiting for her 10 min. wait to dive into the 1 cookie the batch made! Hahaha!!! I can't help but chuckle!!! Oh No! The timer just went off! Gotta get those cookies fresh out of the oven!!!!!! I'll post some pictures of our first extravaganza!!!

Where do I begin!!?!?!?!?!

Oh man! There is BIRTHDAY EVERY WHERE IN MY HOUSE!!!! I'm not kidding. There is not a corner of my house that doesn't have a new toy, a gift bag, left over party supplies, etc... =) Oh it was so much fun! I'm working very hard today to pull the house back to a some what orderly fashion. I don't think my house is ever 100% clean. My kids just don't permit that. I have struggled with that here recently, but I'm learning that they come first and the rest will fall into place when it does. You know, this season of life has taught me so much. The importance of life, the importance of people and family, the reality of spending every moment to its fullest. In my last posting, I listed all that is going on in life and I can spend my time trying to make my house perfect, trying to keep my van spotless, trying to put my time into busy work to please others, but the reality of it comes down too... there is nothing more important than spending that time with my children and my family who needs me. Things are going to be out of order at times and it is important to keep things in order... but it's so much more important that people see God in me and my family knows that mommy loves them. I doubt that my kids are going to look back and say "Man, mom really kept the house clean, she must really love me!" nope, I think they'll look back and say "mom held me when I didn't feel good, mom snuggled me when I was scared because of the bad day I was having..." That's what I want them to remember... not a mommy that was so busy keeping the house clean that they didn't have their literal needs met. I have no idea what any of our futures hold... but I know one thing... no matter what... I want EVERY ONE TO KNOW, I loved my family and I loved my God with all of my heart. I want my babies to grow up and look back and say "man, mom was such an example to me. She loved me so much and wow... look at how she loved God." I want my extended family and friends to know that as well. So, I am stiving to put my focus where it belongs in ALL of our situations right now. We love you all! Thanks for being there for us! Stop by the kids pages today to leave them a message if you have time! They love it!!!

Taking a deep breath...

Well, my week is hopefully OVER as far as EXCITEMENT goes. I am not sure my poor body can take one more thing. Abby had her sleep test. I don't think she'll get as good of results this time as she did last... however, I don't think the results are going to be that bad either. She was VERY RESTLESS. I was hoping they'd get to see that because she is OFTEN that way at home. I am not sure if it is pain and discomfort causing it or if it is a sleep issues... but regardless... it's killing her sleep and making her more tired. We'll know more in a week or so when the final results have been read and given to our doc. We spent today in the Riley ER with Abby. She was dehydrated. Poor dear! If it isn't one thing, it's absolutely another in our family. Things have just been hitting left and right. Jeff's mom has cancer, she had to have a gtube placed, she is then having her bottom teeth removed and she starts radiation and chemo TOGETHER Wed. the 12th of dec. Jeff's brother is loosing his mother-n-law. Her blood levels have been acidic for too long and has DESTROYED her liver. They expect her to pass within the week. My mom has some health issues going on that are going to require a couple of surgeries. On surgery is diagnostic related... they are concerned there could be some major issues. Then you put every thing with the kids on top of that and spells TIRED. I think most days I am chasing my tail! Oh, and Jeff's sister is bleeding internally and they can't find it... PLUS she's just been diagnosed with rheumatoid arthritis... DO WE HAVE A BULLS EYE ON OUR Heads??? I'm beginning to think so. We are hanging in there though. God has given us incredible strength and blessings these days! I'm not sure who prayed for us on my last post, but thank you! Thank you to every one of you who leave comments here or on the kids caring bridge pages. (listed to your left in the column under Our story of mito myopathy). Those comments get us through some days just knowing that people are there! So, thanks! I think it is time for my tired bones to fall into bed. I need to clean up after our birthday fun, unpack suitcases and do laundry... WE leave Tuesday for Abby's surgery on Wednesday... SO LOTS TO BE DONE! Night all!