Change of Pace

School just ended for Garrett, and he is now home with us all summer! I somehow, for the first time since he has been in school, feel excited about this summer. Garrett has made some huge strides lately, and because of those strides, having him with me is more of a joy than in the past. He can stick with me now better than ever, even wants to, sometimes to a fault. He seems to have very heightened anxiety about my whereabouts lately. If we are irrigating fields (which he could not tolerate at all last year due to safety concerns about him wandering into water, horror), he wants to walk with me, holding my shirt, but staying just in FRONT of me. Mind you,  about half the time I am irrigating, my arms are full of pipes, tubes and sheet metal dams, so I cannot see exactly where Garrett is!! SO that's new and odd. He also has horrible phobia of ants and beetles, flies, and just any insect of spider, except the giant spiders in one of the Harry Potter movies, and then it is LOVE the spiders!!! The short of it is that Garrett now WANTS to be RIGHT WITH ME, which is also a HUGE comfort when we are in public, as it means he stays close and safe. This has never been the case before!

On the other hand, we are all out of routine here. For Addie and Ainslee, summer means only one lesson of math during weekdays, and their friends are free from school so available to play more. But for Garrett, the lack of routine is a wreck. My parents arrive for the summer on Friday. Grouchy comes home from an overseas work trip on Thursday. RaeAnn, Garrett's PCS worker and developmental therapist, will return to work with him tomorrow. But the lack of the usual school day routine wears on Garrett. Sundays are usually rough, and so we force a nap. But now he is four days past the non-schedule and it is worse. I think that my parents being in the bunkhouse will give Garrett more options and more of a ritual. I pray so, anyway!!!

Looks like I may have a part time teaching job in our little town in the fall! I am elated, and this came out of left field, but it is perfect. More on that in a later episode as things become official.

Pray with me for my high school friend, Heather, as he six year old son, Thomas J., died as a result of brain cancer last night. I have witnessed so many Mito kiddos leave the earth too soon, several cancer kiddos, and now another one. It is most amazing, though, how this family has encouraged the rest of the world in the Christian journey of sending Thomas to God so young. They have used Thomas' sickness to offer the hope of spiritual healing to others. So let's pray for their sorrow to be put into active worship and ministry and life-long change they wish to see in the world as they are already stepping forward to look to a future of helping families walking their same path. Please, please take time to pray for them. They will be needing the prayers for the rest of their lives. Things will never be the same. And another medical-mom has realized how gaping the hole is where her medically complex, precious child once occupied. Heartbreaking.

I hope this finds you with summer plans and relaxing schedules, YEAH, RIGHT!!!! Prayers for each of you reading this, and special prayers for Thomas J's family and friends.

Godspeed,
CL

Senior Project and Science Project Focusing On Mito

My sweet niece has made a wonderful Mito awareness video, but for some reason, I cannot get it into a form to share. Sad, but I will figure it out. My niece is 12, and the video is FANTASTIC!! She shared it with her class and then again with another organization. I am so very humbled that she chose to focus on Mito at the local level and raise awareness. I love this precious little gal so much, and I know from the care she shares with her cousins and the artistic talent and attention to heart and detail she used on the video, that she is going serious places, and will help others in HUGE ways along her journey!! I am so so so proud of her!!!

AND THEN.......

A senior student at our local, small town USA high school approached me about doing her senior project on Mitochondrial Disease Awareness. First, I was speechless! I know this amazing young lady and her fantastic family from our involvement in 4-H, and I already liked her a lot, but this pushed her into the LOVE category! She has met with me twice, shared her ideas, taken over bracelet-making, written talks, scheduled presentation to multiple high school and middle school classes, and is even doing an awareness video!! SO tonight, while photos are being uploaded to her for the video, I had to get over here to share this fantastic news!!!!

Every bit of awareness is KEY to SOLVING the problem of Mitochondrial Disease. Never discount the value of even just telling one person about Mito!!!!!

Godspeed!!
CL

My Boy Further Amazes Me!!

I have to post a quick report on a wonderful evening we had Saturday with very dear friends. We arrived at their home around 4 and stayed for a hotdog cookout, wonderful homemade salsa with chips and enough fixins and snacks to sink a ship!!!

But even though the company was FABULOUS, the food was DELICIOUS, and the evening was WONDERFULLY FUN, that's not what stands out.....well, it does, but one other thing beats it! Garrett was with us the whole time, and he was such a great boy!!! As recently as six months ago, this long of an evening or time out in one location would have flopped. Actually, about two and a half to three years ago, we completely gave up taking Garrett with us on those sort of outings. We would always get a sitter or just not go. More often, we wouldn't go. Friends (not all, but many) in a former town, just plain stopped inviting us to things since they knew we typically wouldn't come. We began to feel a little isolated and left out, honestly. No, this wasn't our very closest friends, but it was those fringe friends and large groups of friends and acquaintances. We did have SUPER love and support from our church, family and friends back then, so don't anyone take this wrong!!! But it was a feeling we had never felt as a couple. Isolated was the last advective you would have used when describing us!! I tell you this to paint the picture of how amazed and THRILLED we were to be leaving a family's home near eleven at night with a HAPPY BOY who between friends, iPad, my phone and his sisters, was completely calm, happy and entertained.

I am still beaming!! I have so much more greatness of Garrett's to share, but I need to get some sleep. I hope to share more and more of the GOODNESS going on with our little hero. My deepest desire is to help you see very clearly how God is at work and how YOUR PRAYERS are yielding huge progress and change in our son and our family. I love each of you and cannot thank you enough!!

Godspeed,
CL

EPI-743 HUGE NEWS!!!

I cut and pasted this from another mom's blog, and I know this can mean HUGE things for our child and thousands of others in the maybe not too far away future if things like this keep happening!!!!

EPI 743 gets $545 million from Japan's Dainippon Sumitomo

This is a HUGE win!! If you happened to watch that TED Talk I posted a few days ago, it talks about how many years it takes to get a drug from testing to market (14 years) and how much money (billions). 


Edison Pharma Inks potential $545M Deal with Japan’s Dainippon

March 29, 2013 

 

From BioWorld: ”Privately held Edison Pharmaceuticals Inc. wooed a big pharma partner, inking an R&D and commercialization agreement with Dainippon Sumitomo Pharma Co. Ltd. (DSP) to develop lead program EPI-743 and follow-on molecule EPI-589 in Japan.

Terms called for Edison to receive $35 million up front and $15 million in R&D support. The Mountain View, Calif.-based biotech also will be eligible to receive $10 million to $35 million in development milestones per indication and up to $460 million in commercial milestone payments, as well as royalties on commercial sales. DSP gained development and commercialization rights to the compounds in Japan, but no ownership or control over development activities elsewhere.

EPI-743 is an orally bioavailable small molecule in development for inherited mitochondrial diseases. A member of the para-benzoquinone class of drugs, the compound targets the enzyme NADPH quinone oxidoreductase 1. EPI-743 is in U.S. Phase IIb trials in Leigh syndrome and in Friedreich’s ataxia, both ultra-rare indications.

The initial scope of the transaction includes both pediatric orphan inherited mitochondrial and adult central nervous system diseases. DSP will assume activities required for development, approval and commercialization of EPI-743 in Japan, initially focusing on orphan pediatric mitochondrial disease.”

And another story on it here, including an interview from Guy Miller, Edison Pharma's CEO.
http://www.nutraingredients-usa.com/Research/Nutrition-2.0-Closer-than-you-think-and-a-tremendous-technical-and-business-opportunity

Blessed Easter, Everyone!

I wish you a wonderful Easter Sunday.
This Easter, I am especially thankful for the blood Jesus shed for us all, whether we decide to accept Him or not. If you have  not accepted Christ as your lord and savior, I urge you to read the Biblical accounts of Christ's life and death, and how our Lord and Savior most of all wants all of us to follow Him and live eternally. Then consider: Wouldn't a love like that at least deserve my belief and earthly love?

I am also, more than ever, thankful for the man God placed in my life as my husband and our home's Christian leader. I could never had dreamed of a better man and father to our children!

Looking back, my parents are the people who most strongly impacted my faith walk as they raised me in a Christian church, encouraged me to be involved with Christian friends and activities, and supported me in spending some of each summer at a YMCA camp where every day we worshipped and sang songs of praise and worked to live as followers of Jesus Christ. I also had grandparents who encouraged my Christian journey and were role models.

And this past several months, more than ever, I can clearly see the miracles God is working in our family through our attitudes, trials, challenges and now more and more, through the healing and hope we see through our children.

This Easter I wish most of all for every knee to bow and every tongue confess that Jesus is Lord. The price has been paid through Jesus' death and then the glory of His resurrection is a free gift meant for every man....should he choose it.

It really is that simple. Child-like faith is what is asked. Just believe. We can all do it!!!

Blessings,
CL

Blessings Abound with Garrett

This is a post I never imagined getting to write. When I look back at past posts, the S.O.S. type where I poured my soul across the keyboard hoping for some peace in getting it off my chest, I realize even more what a miraculous, prayer-answered this post is!! Well, not actually the post itself, but the events that allow me to post about this!!!!!

Garrett has rounded a corner in his emotional life!! A HUGE CORNER!!!!!! I cannot believe I have waited until tonight to finally share this great news, but we have had very dear friends visiting from back in the Southeast, and well, Garrett has been doing so well that I didn't want to break away from this new awesomeness to post!

So what's up? Why the big fuss? Well, it seems Garrett has gotten even more marbles rolling in an intentional, logical direction in the past month. It's like he has settled down and started thinking about how he SHOULD act and react and working REALLY hard to choose the right path. He is also noticing more about the world around him like trees, birds in the trees, animal sounds outside, etc. He has started interacting with life outside his little bubble. He has also begun asking if we need help with things sometimes.......WHAT!?!?!?!? No joke, it is almost like he just grew up another year in the past month! One of the most fun results of this change is that he almost always understands when someone is kidding versus being serious about something. You may laugh, but we have had to work hard to train him on what "kidding" is! And he finally seems to get it and almost always read people's "kidding faces" to learn how to react. I have to give Grouchy tons of credit here as he never gave up on helping our little man understand how to kid and have fun joking around.

Garrett was in bed tonight conning me into reading more than I wanted of yet another Dr. Seuss book. He tends to get one on his mind for a week or so, but he pushed the envelope tonight and read a new one. Reading, wow!! He is ASKING us to read books to him. He will work hard to get his favorites together, and he will sit and listen pretty well. His teacher and staff at school have worked so hard on this simple skill, and the dividends are arriving!

After we read the books tonight, he put his little head on his pillow and said. "Mom, will you snuggle with me?" And he let me put my arms around him while he fell asleep. Just last week, he allowed me to be "there" but not touching him much except on his very specific terms. He would place my hand on his back or belly and even show me how hard and exactly where he wanted me to "pet" his back or tummy. But tonight it was bliss. I wrapped arms around my boy, my smart, sweet, huge-hearted boy, and he, for the first time since he was a wee baby, fell asleep in my arms......no demands, no specifics, just simply blissful.

Grouchy and I spent some time on the porch in a couple of rocking chairs talking about how much we love Garrett and how much he is improving. We are in awe of the progress he continues to make, the smiles and happiness he brings us, and all of the lessons we have learned through our boy. It was just perfect to end the day talking the positives about this kiddo whose challenges and mental issues have been so huge. I cannot believe we got to end the day smiling and chatting all good stuff about Garrett. I will likely not sleep tonight, but lie in bed praising God for these miracles all night long.

Godspeed,
CL

Guest Post from Dad: Jesus & Garrett

Yesterday, our plans for having Garrett with his developmental therapist while I ran the girls to gymnastics and dance and Grouchy worked on a broken plow fell through due to the therapist's illness. Grouchy ended up with Garrett for a couple of hours until I came to get him and take him to the Y while the girls were in their classes. Grouchy had a neat experience in the truck with Garrett, and I asked him to share as a guest-blog-post. Priceless stuff!! And welcome back, Grouchy. I LOVE your writing, as always!!

3-11-13

One of my constant sources of stress is ensuring that Garrett knows Jesus as well as he can for his cognitive ability, knowing down deep that he has a much better chance of getting to Heaven than any of us so-called normal people with all of our obsessions and worries and worldly matters.  I was busy this afternoon trying to get a plow fixed and finish plowing the corn stubble.  I end up with Garrett for the evening which means no work on the plow, which means a totally lost afternoon for work and basically picking up in the morning where I left off at 2 this afternoon…

Conversation with Garrett in my truck this afternoon:

A Christian song starts playing on the radio and within the first few lines is a reference to Jesus on the Cross.

JG: ‘Daddy, Jesus died on the Cross.’

OE: (Surprised) ‘He sure did, buddy.  Do you know why?’ (expecting something JG-esque like ‘because he did.’)

JG: ‘He died for our sins.’

OE: (Really surprised) ‘That’s right.  It’s the only way we can wash away our sins.’

JG: ‘But, Daddy, how come we don’t have any more sense?”

OE: (sensing a rare moment to witness to my li’l man) ‘Li’l Buddy, we all have sins.  Everybody on earth has sins.  But as long as we have Jesus and love Him, He will wash them away for us.’

JG:  ‘How come we all have sense if Jesus didn’t want us to have sense?’

OE:  ‘Well, we try not to sin, but we all do.  Jesus was the only person on earth to ever live and not sin.’

JG: ‘Awe, I miss Jesus.’

OE: ‘It’s OK, He’s always with us in spirit, but we’ll get to meet Him when we die.’

JG: ‘When will we die?  I want to see Jesus.  Are we on the earth right now?’

OE: (fighting back tears as the range of emotions from the almost certainty of him preceding us to the totally random but appreciated moment with my little man)  ‘Yep, we’re on earth.’

JG:  ‘Why are we on earth if Jesus is in Heaven?’

OE:  ‘Because He wants us to help other people meet Him on earth before we go to see Him.’

JG: ‘When I see Jesus, I’m going to tell him thank you for taking my sense…. (Arriving at the grocery store...) Daddy, can I go in?  I want a doughnut.’

Simplicity can be so genius….