Looking...

Ok, so I have started a new hobby! I know that many of you have seen the video I made with pictures through One True Media. I have learned to do it now on my own with out one true media! SO, here is my question. I am looking for a good scrap booking program for on the computer. Does any one know of any? What is it called? Where do you purchase it? etc etc I'm really enjoying myself! Eventually I would like to get a really GOOD camera... but for now, I'll be happy with what I have! Thanks all! -Mindy

Thanks to my sister...

...I unfortunately know more than I ever cared to as of today!!!

The question is, what do elephants and paper have to do with each other? To answer it... please visit.... drum roll please....

www.poopoopaper.com

A new hope...

I really am not 100% sure how to put words to it, but I feel a new hope. I just hadn't realized how hopeless I feel inside. In one of Jeff's recent sermons, he talked about how when you surround yourself around people that are full of faith, you have more faith and when you surround yourselves around people that are not, well, bad company corrupts good moral... I have come to learn just HOW TRUE that is. I have a new found peace of mind. When we were going to Riley, I was constantly a mess inside. All I could think about was medical and what I needed to do to fight to keep my children alive. Last night, we went to my nephews and sister's birthday party. As I got in the van, I looked at Jeff and said "I have my life back." Yes, there were things I had to worry about still that "normal" wouldn't usual be careful of, but I didn't hover over my kids. I relaxed and I let them have fun. I enjoyed the company around me and I let go. You see, this week, they never said anything about death, they never told us our kids looked just OK for mito... they always said "Oh, for a two year old, he really is looking so good!" They gave us hope that life is going to be OK! They didn't remind us of the painful things of it being a miracle if our kids make it to be teens. nope! they looked at what they can do to get them stronger and gave us hope that tomorrow isn't so scary. It was wonderful! I didn't realize how hopeless life felt... Again, I feel like I have my life back. I feel like I don't have to cling to God every moment and plead with him to not let my babies go from me... I feel like I can enjoy them being two and three now! I'm so thankful that God has given us this safe place right now!

The run down...

Hello every one! We have had a lot of questions from every one, so we wanted to share a bit more about what took place in this hospital stay. So, here is a run down of our trip to Cincinnati. They were ever so kind! They got a hold of a lot of the charting for Joey, mainly from admissions. Their thought process is that first and foremost, they want to get Joey's weight up. they said looking at him, he is extremely unhealthy. Too boney. So, that is NUMBER ONE goal right now. Second, figure out the stooling issues he is having and the lack of ability at this point to gain weight. After seeing his belly mildly swollen, they are confident that Joey has Celiac Disease. They said the blood work is not accurate enough to go on. he will go in for a scope of his stomach and small intestine so they can biopsy and find out what is causing all he is dealing with digestive wise. The third thing they are doing is a genetic work up. They are not convinced that the diagnosis can not be found. They firmly believe it is not that hard to find the issue with the genetic break down as to what we are dealing with. We can say it is just mito, but if we dig deeper, we can treat more aggressively. so, at this point, we continue with mito but will begin a deeper search to figure it out. They are also going to be sending Joey to a muscle doc. they said that even with "mito" diagnosis, he should not be so flopsy-mopsy. So, there is a lot in the go right now. There will be a lot of work up being done and a lot of things that we will have decide on, but I think in the long run, it's going to be better knowing in the end what is completely going on. One thing that may be in the work up is anotherbiopsy. They may send us to the Cleavland clinic to have one of the kids muscles biopsied again. At this point, it may be joey because it has been over a year since his first one. They can do fresh biopsy there with better results than the frozen sample that was previously done and sent off. So, please pray for us. Tons to think about... new emotions we are facing and lots to work through! Hugs to all! -Mindy

So adorable!

Well we are back and in full swing! Miss Abby was very excited to have bubby home and has been very worried about him! She's helping mommy with meds and Gtube care right now. I'm telling you, she will one day be the most AMAZING nurse you've ever met! Any way, bubby was pooped tonight! He has felt good for the first time in a long time and has gone absolutely crazy today! Running, playing, into trouble! You name it! So, he fell asleep well before Abby went to bed. As I was tucking her in, she threw a hug and kiss to daddy and said "That one is just for bubby, could you make sure he gets it?" She snuggles down and after Jeff left the room she looks to me and throws another hug and kiss and says, "That one is for bubby just in case daddy forgets, I know you'll make sure he gets it!" Ha! She had her ground covered! Thanks to all for the prayers the last few days. It's going to take us a few days to truly process all that we just walked out. ALL good things, but still loads of info to process and loads of change coming down the pike! Hope all have a great nights rest... I know I TRULY hope to! Night!

Update...

Hello every one! Joey is doing better today. He has some of his energy back to get up and play periodically. He is still napping a lot and VERY weak. They have found him to have CDiff AGAIN! So, they are treating that. They are making diet changes and talking with a lot of different teams here in the hospital. We have been over whelmed at the information but have found it nice to have new eyes looking in and making some decisions and changing things for the better right now. We'll update when we know more. There are a lot of things up in the air right now and a lot of decisions still being rolled around. They are planning on changing out his gtube from a bard to a Mic-key button. I hope this will help with many things right now! Ok, well enough for now... I'll update with more info when we know more! Thanks all for your prayers! They are deeply appreciated!!! -Mindy

Turn for the worse...

Joey took a turn for the worse through the night last night. we are headed for the hospital as I type. Please pray. I will update when I am able. Family is unaware as of yet. Still very early, I will call when we are closer to let them know what is going on. Thank you for your prayers during these times. -mindy