Sleepless nights...

You know, usually it is my kids who keep me up, but tonight, nope... it's that thing called emotions. Yeah... they get me every once in awhile. Today has been very hard. Abby got to go to chuckecheese for her birthday today. Yesterday was her party with her family and friends. she got up this a.m. and cried most of the day that she was hurting. Joey was weak and fell so much he was hurting himself. Then came chucke. I was hoping that it would pull them out of this. don't get me wrong, she had fun, but she wasn't herself. She was slow to switch games and pretty much stayed in one area for a REALLY LONG time. When she finished, she cried to go home and didn't even want to pick a prize. If I set her down, she'd just start crying saying "Mommy hold me, don't let me walk, I hurt mommy." I controlled my emotions for her sake, but now, I just don't know what to do with them. I called Nuero today to ask about this weakness especially in Joey. I knew the pain was the usual Too much, but I've never EVER seen this much weakness. They thought we were seeing "drop seizures" but after some questions, that was quickly ruled out. So, she dropped the bomb. We are simply seeing a "true" flair up. She explained this is why they order the wheel chairs. it absolutely broke my heart. Have you ever done that? You know something can happen, probably will happen, you're just sure you'll be ready... it hits and you crack? I've cracked. They are both so precious! They just smile and move on. I wish I could have that kind of faith. Well, I guess I'm off of here to try and focus on the right thing... get my eyes off of this storm and onto Jesus! thank you for those of you who have stood beside us, loved us and been there for us through prayer, e-mails, comments here or on the kids caringbridge pages. You are all wonderful. Abby has a sleep test tomorrow night. Please pray for her with this. Night all.

HAPPY BIRHTDAY MY DEAR ABBY!!!!

Today is officially Abby's birthday. However, yesterday was her party. She had an AMAZING PARTY! Thank you so much to every one who helped make this so amazing! She was so tired when we got home. In the van, she told me that she had fun but it was hard cause she was tired. She's so sweet. Her little legs and back were in severe pain by 9 last night. However, it did not affect her gleaming smile as she just kept saying how nice it was for every one to come and to giver her a present. She is such a little pumpkin! I couldn't tell you how a child who can be an absolute stinker can be an absolute sweet heart! I tell you, as a mommy, I was so proud. Nothing does my heart more good than to see my children smile. They go through so MUCH and I just wanted to see her have a care free night with out thinking about the scary things they face. She did at that. As I tucked her in last night, she kept saying thank you over and over. So, I say thank you. Thank you to every one of you who blessed her with cards and gifts and even donations to her fund raiser. We are marked at $70.00 right now. That's just wonderful! Both kids are asleep still. They have been in bed with out waking for 10 hours now. So, I know this party did a number on their little bodies, but they both had too much fun to speak of!!! God bless all! AGAIN... THANK YOU!!!!!!!!!!

Joey's big dance...

Ok, I haven't been on much because life has just been busy. I don't know what has hit, but life just feels over whelming... so I wanted to bring to you the one thing that can always make me LAUGH NO MATTER WHAT... My son dancing! So, click play and enjoy! Hope it makes you smile as much as it does me! night all! Oh, don't forget to leave your revues for Joey! You wouldn't want to leave him feeling like an unloved dancer!

Worn out....

Well, Jeff returned home from church today. I informed him of how Joey's day had gone... so we packed life up and AGAIN headed for Riley. Joey's worsened with his breathing. We are back home, THANKFULLY (for details, go to www.caringbridge.org/visit/josephpfohl ) This whole week has been a struggle to know when the lines been crossed as far as keeping him home or racing to Riley as quickly as we can. It's so hard as a mom to know when to draw the line and make the call. I pray every day that God gives me the wisdom to help the kids. I have two complex kiddos, and neither one of them came with an instruction manual... Hmm... Oh well... Here's hoping for some sleep tonight. I was up all night last night with Joey. So, hopefully tonight, we can all rest easy! Hope you all have a wonderful evening... ok, night... evening is pretty much over! Night!

The madness...

Today came with mixed emotions for me. We didn't take off early to do the "Black Friday" shopping frenzie. The kids can't be around that big of crowds and you know every germ is out on this day because many let NOTHING stand in their way for the big race to save some money on great Christmas deals. So, we waited it out... Went in late morning and had to retreat because the store was still PACKED! I found myself a bit emotional today. Watching the other kids and some wishing that my kids were "normal" and able to be out and not fret the flu bug. I shook myself out of it though and managed to enjoy the rest of the day. We took the kids to Sickles tree farm outside of Lynn and let them pick a tree today. They both were VERY excited. They can't regulate their body temps, so we couldn't take the time to cut one, but it was fun to pick one out that was inside the barn anyways. Joey really enjoyed watching them cut the bottom, position it on the tree stand and wrapping it to go home. He thought that was great! Abby, well, she wasn't feeling good so by that time, she barried her face and just wanted held. Her ear has worsened... I am so worried about her. Hopefully the new med we got today will bring some relief. I am looking forward to the Christmas holidays. I am beginning to cherish these times MORE AND MORE! Hope you all had a wonderful day. God bless you! Hope to hear from some of you! Oh, don't forget to check out the plan for Abby's birthday in the column to your left! She got her first card and shook with excitment! It meant the world to her. Night all!

What a wonderful day!

I don't think I need many words to express this... but I'm so thankful for my family. Today was the most wonderful day we have had in a long time... Abby prayed for snow and she got it... we had to play inside... but we had SO MUCH FUN! We cooked, we ate, we laughed, my ribs hurt from laughing, but tonight, I go to bed with an EXTREMELY THANKFUL HEART for my entire family! I love you all!

Rat races....

Days like today, I'd give anything to feel like life was some what normal. Both of my kids woke up today with fevers which lead to a rat race... off to Riley we ended up going. Our local PCP refuses to treat the kids because he thinks they are on too many meds... well, metabolic kids have to take a lot of meds to keep their little bodies functioning... so, we turned to Riley. Thankfully so! (you can read their updates... info to your left under our journey of Mitochondrial myopathy) Anyways... we made it back in time to have dinner with Jeff's side of the family. It was great hanging out with them. Reginna (jeff's mom) has found out her cancer is worse than expected. So, she is having chemo and radiation at the same time, PLUS she has to have a gtube placed and possibly a hernia repaired before going into all of this. The poor dear! I'm so wiped out tonight. I hope all are having a wonderful day and GREAT plans for a wonderful thanks giving tomorrow! Me.... I'm dropping into bed and getting ready for tomorrow. =) Night all!

Needing a deep breath...

Man, tonight, I was looking through my calendar thinking how glad I will be to see this year come to a close so I can take a deep breath and slow down. Our Riley visits have been ABSOLUTELY INSANE here recently. Then... I STARTED COUNTING. The prognosis was not good! 8 appointments in the first two weeks of January. Oh dear! Guess I'll save my deep breath and hope for February! =) Today, life has been pretty laid back. The kids are both fighting colds! Don't forget, you can check in on them on their caring bridge pages (links are to your left under the journey with mito section) We had to cancel rehab because both kids are sick and were running low grade fevers through the night. So, we ran into Walmart and got some Tylenol and came back home... I think I took like two mini naps! I need like two super dooper naps! =) I just look forward to days like this (on the exception, I'd rather the kids not be sick to get them) where we can just lay around. Today, I had time just to sit and talk to both kids. Abby decided we needed to name EVERY ONE who loves her... it was neat to watch her little mind work and come up with different names. Then Joey, well, I enjoyed watching him dance. We turned on Jack's big Music Show and just cut loose. I wish I had more days to just enjoy my kids. It was actually refreshing. I guess our sick day turned out to be an ok day. Well, here's hoping for a healthier tomorrow! I'm dropping in my bed! Too much thinking and too much dancing in a 24 hr. period for these bones! Night all!

Shhhh.....

I just found out our turkey dinner was supposed to be a surprise! Next time, I'll pretend I didn't see FFC youth on the card in our box... =) So, I'm anonymously thanking whomever blessed us with our anonymous gift! We love you just the same!!!!!! =)

What a day!!!!

We had not been home very long and some one was banging on our front door. I was priming bubby's feeding tube and crushing pills (my usual nightly routine). I hear Jeff call out that some one was at the door. So, I went to see what was going on... NO ONE WAS THERE. This is odd. So, I wearily (I hate doing this because I'm terrified some one will get me) opened the door to peak out. No one still. I shut it and say "man, that's weird." Jeff looked just as puzzled and says "look again, maybe someone left something." So, I looked again and there it was. A wonderful tote FULL to the brim of all the fixing's for a WONDERFUL thanksgiving dinner. Abby started jumping up and down screaming "Mommy, what is it?" WE finished Joey's meds and tucked him before going through it. As we went through it Abby would gasp with every item we pulled out and proclaim "OH, this is so wonderful of them. Oh, we need to say thank you!" She is so precious! So... all this being said... a GREAT BIG THANK you to the youth group of Farmland Friends Church. We are so APPRECIATIVE! God bless every one of you and happy thanksgiving!

Don't forget to check out the scoop on Abby's birthday in the article to your left. Night!

For miss Abby...

Ok, this is out of the loop of what I was going to do with my blog, but it is very important to get the word out. We are doing something for Abby's birthday and I would ask you to read the posting to your left titled with "happy birthday abigail". Thanks much! I look forward to seeing how this goes. Night all!

Catching some Zzzzz's....

I tell you what, today I think I crashed and burned. we have all been SOOOOOO run down this week from all the Riley trips. We went last Thurs, then Sun. we were there again for the Mito get together, Tues. we were in the Riley ER and then Thurs, we were there getting Joey's button changed on his Gtube. So... I was thinking all this through and thought... hmm... that must be why I'm tired. We went to my parents house and I think I fell asleep there twice today and then when we got home, I slept again! Luckily the kids were asleep here. They are toast too. Hopefully tomorrow, I won't be so tired. This week should be MUCH better except for the rush of the holiday and TRYING NOT to gain my 18 lbs. back! That's been a HUGE battle for me here recently with all this running and doctoring. It is so hard to follow a diet when you don't have time to stop, cook and eat the right foods. Jeff and I are working on a plan... so now that I have had my nap, get through this week... we are off to a new try at figuring out how to pull life together and still stay healthy. Thanks for stopping in! I hope to hear from some of you. The hard thing about the blog is you HEAR from me and I don't hear from you... so speak up! =) Until next time!

New changes...

Well, tonight, I am doing something new. For awhile now, I've been using the kids caring bridge pages to tell about what they are going through. Life has become so different for both of them that really, I love the CB pages because I can share those differences on their own page. I don't have to worry about details and it being to long... you can pick or you can read both. So, my blog has begun to feel repetitive. It's begun to feel as though I have nothing else to say that you don't already know. So, my blog is going to become just about me and my personal journey. Spiritually here lately, I've been doing some soul searching because I have lost who I am in the midst of the medical issues we've been facing. So, I'm trying to find me again. I'm trying to find the things I enjoy and some how find time for Just me. I have found myself burning out and well... that's what happens in the midst of never finding yourself... so, I welcome you to get to know me. I will talk about the kids on here some because they are a part of me and who I am now as a mommy, but they will not be my center focus. If you want to follow them, you can sign up on the CB pages for updates when I update their journals. I do it just about every day. I know that Abby especially has enjoyed the CB pages because she gets to hear notes to herself from others. Anyways, their address will always be to the left under their journey with Mito... however, for some help... you can click here to visit... www.caringbridge.org/visit/abigailpfohl www.caringbridge.org/visit/josephpfohl Have a great night all! I look forward to hearing from all of you! God bless.

Nothing more frustrating...

Well, Joey has been going down hill instead of up with every thing right now. So... I decided to try something new today. I took him to our local PCP instead of calling Riley first... BIG MISTAKE! He was like "well, in a normal child..." PUT ON THE BRAKES! He lost me there. It was a horrid reminder to hear that my child is not normal out of a physicians mouth... but regardless of the words chosen... HE DID not know what to do and would do nothing for a NORMAL child so did nothing for my child of which he labeled NOT normal. So... I left in tears might I add.. I held my composure until I was in the elevator of which two women were in there with me who just came from the same office... so now I looked like a NOT "normal" mommy. Ha! Well, this just wasn't the day to be "normal" I supposed for the Pfohl family. Anyways, all being said, we spent a long and tiring night in the Riley ER, but for one of the few times EVER TO HAPPEN... we came home tonight. Joey's been put on motility meds because his mito is causing gastro-intestinal dismotility. So, hopefully this will help and I'm so praying it doesn't cause us to RE-VISIT the other way! We are exhausted but glad to be home! On a happy note. Our PCP said Joey's liver felt enlarged... but according to Riley... it wasn't! So, I'm just believing God had a hand in that! Ok, my eye lids are dropping... I'm going to go try to sleep in my bed so I can get up and face tomorrow fresh! So thrilled it is my bed and NOT a Riley couch! Night all!

Not too bad...

Well, today, we went to the UMDF get together in Indy. Wasn't too bad. Every one was really nice. I was nervous and a bit anxious I think about being there. However, it was good to meet others and actually, I look forward to going back again. Any of you reading this, if you have mito in your family, please come! The next one is the 2nd Sunday in February from 2-4. We'll be meeting in the basement of the ROC. Anyways... the kids are doing OK today. Abby is feeling better after having some problems with her ear yesterday. Joey is less grouchy, but having more intestinal issues.... so we haven't weighed out yet what is best. Hope all have a great night!

Mixed emotions

Today, we are going to our first Mito get together. The United Mitochondrial Disease Foundation has mito chapters in each state that get together to provide information, support, etc... We have never been to one. Mainly because we have not had a chance to. I will confess, the whole first year, I avoided them because I was scared. I didn't want to see what other families face, I didn't want to see what we may face in the coming years... I just kind of like that comfort of knowing my kids are doing "good" in comparison to many. However, the mito journey really is a lonely journey. Don't take me wrong at all! We feel so much love and support from so many of you, however, no one really understands the disease and the impact on one's life unless you have walked through it. Take cancer for instance, you care and you feel sadness for some one when you hear that they are being affected, BUT, you can't even begin to imagine what they are feeling inside facing that battle... so, I think it is time. We have faced much of this straight on and it's time to meet others. So, I think I'm looking forward to it for the sake of sitting down with another mom that faces mito every day. At the same time,Ii'm trying to prepare myself for the emotion of meeting mom's who's children are much more progressed or have even lost children to mito. So, please pray for us today as we go. We appreciate it. For info on the kids, please visit their CB pages. I do DAILY posts there to update on them... so if you feel like your missing something... check in... feel free to leave them a note there letting them know you love them! www.caringbridge.org/visit/abigailpfohl www.caringbridge.org/visit/josephpfohl Have an awesome Sunday every one!!!

Feeling thankful...

You know, this road has felt unusually hard and lonely this week. I have found myself questioning why, feeling anger, feeling confusion... you name it... I think I've honestly felt it this week. So many turns of events, so many pop up surprises... so many things we are awaiting answers on and one thing I know for sure... I'm grateful for friends. There are friends who have stood beside us through this WHOLE thing. You have cried with us, laughed with us, questioned with us and listened. I can't say how thankful I am. I know there are times we have gotten what felt like unbearable news and you haven't backed down. There are times when we got joyful news and you WERE RIGHT THERE TO CELEBRATE. So, if you are reading tonight and you are one of those friends... thank you. Thank you for listening. Thank you for praying. Thank you for being strength for us when we felt we had nothing left to give. You are a God send and a WONDERFUL support. So, out of all my emotions this week, my biggest one is just being thankful that WE ARE NOT ALONE!

Life goes so fast...

Just a few days ago, Jeff and I were discussing absolutely how BIG abby looked in her toddler bed. We could remember when she first got it that it just over took her. WEll, thanks to the Bickford family, Abby has exciting bunk beds now! She is THRILLED! Well, we had to laugh, because again, the bed is over taking her! She looks so tiny!!! She is absolutely adoring sleeping in them though! So, thanks guys!

Today has been long AGAIN. Back and forth with the pharmacy and back and forth with Riley. We are waiting to see if we can get Joey's new meds. They had to special order them unfortunately. So... we are now waiting on a call back from Riley. Abby is going to have an EEG done for possible absence seizures and then also, they may be doing a muscle biopsy on her while we are there on Dec. 5th for testing. We'll see what happens. Thanks to all for your prayers. God bless!

A rough day...

Good evening every one! I tell you, today has felt to be a VERY rough day. We had riley visiting today. Joey has been border line being admitted, but so far, he has succeeded in staying home! I am very tired tonight, so I'm not going to update here. I'm going to ask you to go to their caring bridges. There is a LOT of info and I just don't want to type it again. so, for Joey www.caringbridge.org/visit/josephpfohl for Abby www.caringbridge.org/visit/abigailpfohl Sorry guys! I'm just too wiped out to say another word on that situation! =) Please be praying for our family. We were notified today that jeff's mom, Reginna has throat cancer. This was unexpected and shocking news. They have not done a biopsy (will be done next wed.) however, with the looks of things, they are going to be starting radiation much sooner than the biopsy results would be in. Your prayers would be appreciated. They are planning on doing a CT scan tomorrow. It appears the cancer has already gone into her jaw, so they are looking to make sure that it hasn't spread further. Thank you for praying. We are tired right now and this was VERY hard news. Thanks for standing with us. We love every one of you!!!!

Life is a blur...

I tell you, I don't know where this week has even gone! The days have gone so QUICKLY. I am praying for a slow down in life right now. The kids appointments have just been insane and life has just been SUPER SUPER busy. We had rehab today. We talked with them about concerns with joey's speech. He had 3 seizures last week (we went like almost 9 mths. seizure free too!) but the seizures wiped out his oral muscles really bad! So, we have decided with the input of his speech therapist it is a good idea to begin some sign language with Joey. We are just starting with some basic things. So, we'll see how it goes. He used some today with is OT so that was good. Seemed to catch onto it well. We've been having some trouble with him getting totally frustrated from wanting to communicate and now being unable. So, daddy and I are going to be venturing into the world of signs. YEAH! =) I used to do some signs with my parents ministry, so hopefully some of that will be easily refreshed. Abby isn't doing too bad. She has been working with her OT on learning to pace life. She thinks she has to push herself and not doing things in a timely fashion... so that makes it kind of rough when you easily fatigue. Things are coming along ok... Me? Well, today, I'm just here. Very tired. Very much struggling. We have a whole new transition in life with many different areas and some things are just not as easily faced... so tomorrow is a new day. I'll be back up and running again! Hope all are doing well. Don't forget that you can leave the kids messages on their pages. Joey is www.caringbridge.org/visit/josephpfohl abby is www.caringbridge.org/visit/abigailpfohl Night all!

Only God knows the number of our days...

With a heavy heart, I am asking you to pray for Alec's family. We just learned of him today, but they lost Alec to Mitochondrial disease on Friday. 20 hours later, his mommy went into labor delivering a baby girl. Please pray for them. My heart can only imagine what they are feeling! If you'd like to let them know you are praying for them, please go to http://www.caringbridge.org/sd/alec/index.htm The severity of this disease rings true. May god hold this family ever so close through this!

Embracing life...

I tell you, this week has been SO LONG! A lot of ups and downs to our Journey this week. Celebrations and dissapointments, but I got to close the week in an AWESOME way. My sister was free and able to watch the kids so I could go to Saturday night service. Jeff was preaching this weekend, so I especially enjoyed it! Not that I don't enjoy pastor Kris (sorry man) but it's just that Jeff and I haven't gotten to share a lot of ministry together. When we met, that was the basis of our relationship, we ministered, we shared, we worshipped, we did so much together with God and for God. We have missed that. However, life has taken a refocus right now and our ministry just isn't to people, but to our children, so I am not complaining, but thankful that I got to share in his ministry last night. It was so wonderful to stand beside him to worship and to worship with others as well. I tell you, God has been so good to us. He has helped us over come, he's held us up when we thought we couldn't look at one more day, he's celebrated joys with new steps the kids have taken, he's mourned with us in the times where we just needed to cry... HE HAS BEEN FAITHFUL. Many ask us how we do it and say that they are in awe of the faith we hold, but living day to day, we don't always feel strong and as a matter a fact, there is nothing but faith to have because life is not within out control. I think every day,I have to fall into the arms of God and trust that HE IS going to be strong enough to carry us through. My title of my blog today is embracing life. Not just embracing the day to day activities... but embracing God who IS LIFE. So... with great ecxitement, today, I am embracing life... I lift up my head... where does my hope come from!!!! Thanks God for being there to hold me and carry our family through.

Little stinker!!!!!!!!!

Well, we were in Walmart (me and the kids) getting some groceries today. As I'm unloading the basket of the cart, I look up to realize JOEY HAS THE EGGS! I scream "No no Joseph!" So, the little old lady behind me chimes in "Oh Joseph!" She has no clue who we are but she picked up on the name quick! Before I could get there, it was if every thing went in to slow play mode! Joey had done it... the eggs were open and hitting the floor one egg at a time! I could have sworn it took five min. to watch every egg shatter! Yep, there it was! Joey had egged walmart! I stood there gaping mouth and all. I didn't even know what to do! So... one of the employees that used to work with my husband gave Joey a high five and laughed! He said "I couldn't have said better how I feel about this place son!" I was so thankful that hew as standing there because instead of every one being mad they had to wait longer in this always long line, they were all laughing along that Joey had dumped 1 doz. eggs on the floor! haaa... what a day!

We got GREAT NEWS today. Joey is not going to have to have a J tube right now. He is gaining weight! Your prayers have worked! He is exactly 1 and 3/4 lbs. heavier! That has never EVER been an amount he's gained at one time... it usually takes him 3 mths. to gain that... so God is at work! Thank you! For more info or to leave joey a note, visit his caring bridge page. www.caringbridge.org/visit/josephpfohl

Abigail is going to start on a fortified milk. They'll be using Duocal. Her developmental visit went ok. For more info or to leave her a note, you can visiit her caring bridge page as well. www.caringbridge.org/visit/abigailpfohl Thanks all!