Family to Camp & Surgery Appointment Today

Today is the day I have been so looking forward to for weeks, but it is also the day of an appointment I think I have been dreading more than I knew. First, our whole little family heads a few hours into the mountains for Addie's week of junior high youth camp with Deer Flat Church. Let me insert here how much we love our Deer Flat family!!! Addie will be staying on site this week, while Grouchy, Ainslee, Garrett and I have the HUGE privilege of using a friend's cabin twenty minutes from camp. The cabin is in a quaint town that is small enough that we feel safe and cozy but large enough to have gas, groceries and even a single-screen movie theatre and a few mom and pop restaurants, oh, and a Subway Restaurant too!! Our friends bought the cabin in poor shape and spent over a year making it into the perfect retreat. They thought of everything, right down to heated mattress covers!!! I usually don't feel at home out of my own bed, but when I am there, I feel 100% comfortable and at-home. Grouchy will drive up pulling the church recreation trailer loaded with.....well, not sure what a junior high youth director packs to camp, but I bet it will be interesting!!! SO Addie will have camp week with us only dropping in if the youth director needs help with the activities, kitchen duty, etc, leaving Addie to have camp without real PARENTS around! The rest of us are looking forward to hanging out at an amazing hot springs with five pools and a white sandy beach, playing on the beach at the lake, some hiking, maybe a movie, and just enjoying one another before Grouchy has to go out of town again for work later this week. So Grouchy and Addie head to camp this afternoon, and Ainslee, Garrett and I head up after.....

Garrett's surgery appointment is at 2:45 today. Prayers, please!
At this first appointment, we will be discussing options for Garrett to have a cecostomy or an ACE procedure done. (You can click on either "cecostomy" or "ACE" in the previous sentence to see links with information.) Along with that comes the big question of whether to put a feeding tube back into Garrett. He had a Bard button, allowing food to be poured directly into his stomach, when he was one. He had it for about a year, then through therapy was able to learn to eat by mouth. Now that Garrett has gotten taller but lost five pounds in the past six months, his G.I. specialist and his Mito doctor and nurse are talking feeding tubes again. A nasogastric, or NG tube has been mentioned, but that means a tube into his nose, down into his little tummy, and on sensory boy, I am thinking that constant irritation would not fly. Plus, it is for short term, and we are not looking at quite that short of a time. It isn't like Garrett has been ill and lost lots of weight and is now needing a boost. It appears to be more chronic. Also, for the cecostomy or ACE to work, Garrett's stool must remain soft, and this means making certain he gets enough Miralax, and that means drinking juice or beverage with Miralax mixed in, but also taking in enough additional liquids to have his stool fall through his faulty G.I. system. He has now been on daily laxative along with his usual Miralax for a couple of weeks, and he still isn't having a bowel movement but once every few days, if that. We thought the daily laxative instead of the "as needed" if he hadn't had a BM in a couple of days might help. Nope. We will dose more laxatives today to try to get his gut to move. I am not having a good feeling about the feeding tube....feel like we are going backwards to add that. However, he needs nutrition. In my last post I mentioned we had weaned him off of Risperidol, a pretty serious med for a little person, and then his behavior followed down, down..... And the G.I. specialist said that the Risperidol could have been the only thing causing him to have an appetite. Well, I think she was right, but after a week back on Risperidol, his appetite improved for a couple of days in big ways, but now has leveled off again where the volume of food he is eating is still not enough. However, his behavior and tics are WAY improved, praise, God!!! Guess he truly needed that med, but there was no way to tell unless we tried his life without it. We have added all sorts of creative increase in calories. If I ate like Garrett, I would get really fatter, REALLY fast!!!! But I would certainly enjoy the eating!! Extra butter, sweetened condensed milk on almost everything, lots of peanut butter......fun!!! But for Garrett it seems to be a chore to choke down more food.

So today's appointment will be a discussion, I believe, of how and when to help with a button to give him internal, daily enemas, and whether or not to try a g-button for additional nutrition and liquid intake. In Mito-speak, that's a c-button or c-tube and a g-button.

I know what Mito does and how it can behave, but this is my son. He is really improving as he is learning more and becoming more in-touch and compatible with the world. I am so proud of his progress. We have true RELATIONSHIP with him now, and we love every moment of that connection. He has a much better grasp of proper behavior. He still has tons of challenges in that department, but the improvement is great. Shoot, I am choosing to take him on a three hour drive into the mountains and stay away from home a few nights as a FAMILY, and that alone speaks volumes to his improvements. Although deep down, God has worked in EACH PERSON in our family to bring us to this wonderful day of trying this trip and getting to boast of Garrett's improvements. And I am sad going into this appointment as it means medical intervention of a sort I hoped we wouldn't see. Or not yet, at least. I know he takes a load of supplements, but that's noninvasive, and cutting on his tummy and having buttons and tubes and all seems, well, like regression. On the bright side, we will do whatever he needs to help him. If a button or tube or two makes him healthier, less self-conscious about his bathroom issues, more comfortable, and stronger, I am all for it.

Thanks for riding the emotional roller coaster with me. We will all be fine, and our prayers will guide us and the doctors. No doubts there!!!

Godspeed,
CL

Update: FTT, constipation and surgery???

Oh where to begin?

First, we are now in that annual cycle of doctors' appointments for Garrett. At the pediatrician's visit that was needed for a well check, a camp physical and a required Medicaid physical, it was noted Garrett has dropped off the growth chart for weight again. He is 48 inches tall but 43 pounds. He was 48 pounds in December. He is officially "failure to thrive." So the next day we saw the G.I. specialist who recommended upping calories, adding an antacid in case he is having reflux again, and doing daily ExLax instead of only using it after he hasn't had a movement in 48 hours. Next, we will weigh him in again in about two weeks, and if no gain, we will add an appetite stimulant. Still waiting to see eye doc, heart doc, and surgeon. More about the surgeon in a bit....

Over the past three months, I was working to wean Garrett off of a couple of psych meds. He was doing GREAT in school as far as behavior, and he was even doing okay at home, so I thought it was a good time. Over eight weeks, I weaned him off of Risperidol, but apparently it's also an appetite stimulant in over half of the patients in studies. It appears it may have been keeping Garrett eating, so after talking to the G.I. specialist and Dr. Saneto's nurse a couple of times, we have decided to add more calories in every way we can. Keep in mind that in December when Garrett saw Dr. Saneto and he weighed 48 pounds, I asked Dr. Saneto about how thin Garrett looked, and he didn't want to push calories. He was happy as long as Garrett was growing UP.  However, the behaviors have been on the increase, and while the nurse said that could be from lack of calories, I feel that they are the tics and such for which the Risperidol was indicated. I was really so happy to stop that med, but I started it back today, and he was eating more already and had a super day. We tried to get some meds off the list, but no go.  Oh well.

Then there was a little shock when she asked if anyone had mentioned a surgery to help with Garrett's constipation. She mentioned a couple of choices for procedures that would allow us to take Garrett to the bathroom daily at a set time and administer an "internal enema" called an ACE. I have researched that and also have discovered one called a cecostomy. Both allow warm salt water and some other agents in some reports, to be put into the cecum and thus flush the large intestine daily, completely. As Garrett is getting older, he is getting more and more frustrated with pooping in his pants, wearing a pull-up when he needs to, and so on. He now sees that his peers, even the ones who are ambulatory in his special needs class, do not need that. The G.I. specialist is a brilliant lady whom I trust. She is very conservative. So I feel she has tried all she knew.....fiber increases, Miralax, ExLax, antacids, poop therapy, etc., and sees nothing has truly helped Garrett gain independence of his toileting. While this internal enema and spending an hour in the bathroom daily while a feeding bag and line drain warm water into my child doesn't probably sound like much fun to most parents, it sounds glorious to me compared to what Garrett suffers through right now. There is no balance I have been able to find for him, and he is so miserable. We will meet with the surgeon to discuss options this week or next. I will post more then.

Meanwhile, Garrett is loving Vacation Bible School at Deer Flat Free Methodist church. I am a pirate this week, and I am enjoying teaching the children about Mark 5:36 where, "Jesus told them: Don't be afraid; just believe!" as he walked up to the disciples, across the sea of Galilee when they thought Jesus was a ghost. We have a room Tim and Pam B. fashioned into the lower level of a pirate ship, and we even have kids walk a plank with the verse on it, reciting the verse as they walk so the words get hidden in their hearts!! We have had a few other kiddos and youth hang out with us this week to and from VBS and afterward, and that has been such a joy. HUGE thanks to my mom for taking Garrett to and from VBS so I have room in my car for all these other cool kiddos!!! And this verse resonates with me.....DON'T BE AFRAID.....

I will update more on Mr. Garrett as I know more. Of course, my mommy heart is nervous about where this is all going with surgery a possibility, weight loss, etc. I know all too well how things can and are predicted to go for my precious son, and I know there are so many people praying for him. I have to go to bed, wake, and continue throughout the day, praying for God's sovereign will to be what gives me peace.

I sign off tonight smiling because Garrett and I are having a slumber party in my bed tonight since Grouchy isn't home. I loved sleeping next to Garrett last night also, but it was troubling to reach over to rub his back or tummy or neck and feeling all of the little bones and not much else.

Keep praying for Garrett and all of the children in the world who fight mental and physical illness, abuse, or neglect. And by all means, hug your own kiddos a little more tightly next time and take plenty of snapshots of them in your daily mind's eye. What a blessing they are!!!

Godspeed,
CL

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