Mommy Instinct Wins Again!

Not sure learning my son needs his second g-tube in his life is necessarily something most would chalk up as a "win," but in this case, I count is as such.

Garrett and I flew to Seattle Monday. His appointment with his Mito doc was Tuesday morning. We just flew back home last night.

Tuesday, I finally got confirmation of what my mommy-instinct has told me for at least 9 months. Garrett's brain nor body are getting what they need nutritionally. Dr. Saneto led me through the thought process of how Mito can affect each person differently.....again, today in Seattle. It seems like Garrett's brain is most affected by Mito, now that his colon is better (or just being manually flushed) because of the ACE procedure that is working beautifully to keep his colon emptied. Before the ACE, his colon was certainly a big mess, but the brain was probably equally affected or maybe a close second.  I have felt that his brain may need better nutrition. His muscles, while very small and somewhat low tone, are very much a priority, it seems. He has tons of energy, albeit not governed or controlled very well at all. Then there are all the internal organs that seem to be functioning quite well, and it looks like his brain must get the leftovers. Throughout the past year(s), his weight has climbed and dropped a few times, but he has never had a true growth spurt of weight or ever looked "great." He is just so thin. He would go through times when he would eat better, and then he would slump, and then it would improve. Last spring, we trialed him off a couple of his mental medicines, but his behaviors showed us he needed them and that they had been working wonderfully. False hope I had that he had improved so much we could drop some drugs. Then we saw his appetite go away, but thought it was due to stopping one of the mental meds that also stimulated appetite. We restarted the drug that stimulates appetite with hopes he would eat again, and while he did eat some, he didn't go back up to the appetite he had prior to stopping the med. Out G.I. specialist wonders if this whole time his colon wasn't worsening. Maybe so. Meanwhile, as the ACE procedure came up as an option for Garrett, I asked the pesky g-tube question. Knowing about the g-tube from Garrett's tube that saved his life and made him finally grow when he was about 16 months, I knew what a wonderful tool it could be and wasn't fearful of it. G.I. said to ask surgery. Surgeon said he would like to do g-tube and ACE together to ensure best possible ACE result of intake of fluids and food to keep things moving through his system, but then asked if Garrett seemed to eat better after he finally pooped using lots of meds and laxatives to get the poop out. There seemed to be a good correlation, so we called off the g-tube. I am glad we did, truly. Now we know that the ACE alone doesn't give what it needed to get Garrett to eat. Apparently, appetite and empty colon are not as closely related as we once thought. So I asked the g-tube question of G.I. again last week, but we see in Garrett's growth that he is back to his weight he was a year ago and has started a tiny growth upward. This growth aside, I still wonder if we will see improvement in Garrett's ticks and mental issues once he gets better nutrition on board. We throw food at him as much as we can. He has a therapist/aide here in our home 6 evenings per week to feed and help him, and still, he isn't picking up on the eating, even with one to one help and encouragement. Seems his eating comes in these evening spurts, and that's mostly it. He eats some breakfast and some at school, but given his level of physical activity, he should be cleaning out out pantry daily!!!

So there, I am excited to see if this can help our boy. It's the last thing I know of that we haven't recently tried. How I would love to see the wheels greased in that noggin of his and know that he has what he needs to learn, grow and enjoy life!! I don't care if he stays thin....but I want to know that he has what he NEEDS to power his brain and organs. For a Mito kid, thin is okay. It means less to have to power with the limited energy resources. But greying-out power to the brain...not cool.

So the consensus, with the man I trust most with Garrett's health, was to get a g-tube placed within the next month along with a skin biopsy that can be used for future testing and possibly NIH EPI-743 research. We will fly back to Seattle for that to all happen at once and probably be there only a couple of days.

On a totally wonderful note, Garrett and I had a blast on our 18 hour trek to Seattle. We found the LEGO store! We bought a LEGO set and spent Monday night in our hotel room eating McDonalds (Garrett ate two nuggets and drank 1/2 his milkshake) and building a LEGO set together!! It was so dreamy to just focus on him and have no distractions or duties aside from him. Then after his appointment, we found a Chuck E Cheese and played a game and ate (a 4 inch section of a breadstick for Garrett). Next, we headed to return the car and fly back to Boise where we took ten minutes to play on the Boise airport's little play area because we missed it on the way out of town. We got home in time to play the Wii for a bit, chase his sisters around, let Daddy-O play the tickle game with Garrett, and Garrett slept like a rock!!! He did struggle to settle down for sleep, but I think he was just excited to be home!!!!

Godspeed,
CL

Reality Is Heavy, Very Heavy

I read on a post tonight that having a child with a progressive or terminal illness is a "rehearsal with grief." Wow, I have never heard it put quite like that, but it is so perfectly stated. It's like there is this normal life, the one with stress, worry, fear, day to day rush, financial concerns and goals, pressure from so many directions. Then there is this "real" life. That's the one where I believe I have found. It's the one where the financial concerns cannot be that important. The choices of where to live or what to do when I grow up are completely null and void. It just all doesn't matter.  The stress, worry and fear of the future, well, they are just that, they are in the future, and I cannot change that. I often joke with Grouchy (my angel of a husband in this life) that he has stressors of job, home, taxes and on and on, and I have what I call job security: Garrett. It sounds kind of funny or even heartless, but it is the truth. And with that job comes some psychological torment I cannot adequately describe but that raising my son is sometimes a dress rehearsal with grief.

I had a haunted night a few nights ago, and this post is my attempt to share my thoughts, get some things processed by typing them out, and allow myself to go to some places I know I do not need to stray to often, but that keep my perspective and hope in eternal life with my Savior and my loved ones in the very focused forefront of my life and my family's.

All last night I would wake trying to put adjectives in a long train to try my best to describe what my evening was like two days prior. I just couldn't. Addie was in bed reading. Garrett was snuggled up under his soft blankets sleeping soundly, and because Grouchy was away, Ainslee had curled up on his side of our bed and fallen into dreamland. I innocently migrated to my computer where a post from a dad whose son died last year popped up. His son was just ten years old when he died from Duchenne MD. And like I frequently do, I got a bit caught up reading other posts by this same dad about his son and family. After about ten minutes of reading, my cheeks were quite warm from the tears.

Last week, two children with Mitochondrial Disease went to Heaven. That, of course, is heavy on my heart. Then watching the posts from the dad.....photos that were so touching and others haunting; I was deeply affected. Once can argue that maybe it is unhealthy to walk alongside those recently stricken with grief, but in some strange way, I feel if this is a rehearsal, then I should do due diligence by taking it all in and processing what I can.

Then there are those times when I forget what Mito is, that my son has it, and that it could be haunting us at all. But then there are more times recently when I move from a mom who has a "delayed" child to the reality that mito has caused my child to have mental deficits, ADHD, Autism, not grow properly, have low muscle tone, and now have to poop by having his colon manually flushed through his belly button stoma into his appendix, then on down. Holy crap, has this disease affected my son. And the effects will not go away. Ever.

That night, I went from my computer to my bathroom where I felt my chest had been caved in by a large brick, and the tears erupted, poured, spewed..... It was horrible!!! I was, for the first time, truly up close and personal with the truth of our son's disease and the reality I thought I had faced, well, it showed up dressed much differently than I expected. I rushed to Garrett's room where I dove into bed with him and just held him, kissed him and wept and wept. I felt I needed to tell him I was sorry. Not for what he has, but how I have managed him. I whispered to him all the things I thought I want him to know, things he cannot comprehend yet. While it seems romantic to share all of my thoughts and love personally, directly to Garrett, I cannot do that in the way a parent of a mentally typical kiddo could. Garrett still doesn't and likely will never will process like we do, understand all the words, the apologies, the reasoning. However, in all I do, I vow he will see my love for him in every step I take, medicine I give and even mess that I clean up.

Last night it was real. Mito was a big, fat, ugly elephant in my world, and I begged him to leave!!! After praying and holding my little hero for a half hour or so after the tear faucet shut off, I headed to my bed too. Sleep was welcome, but more welcome was the sound of Garrett's feet running to my room and climbing on top of me with,"Mom, can I play the Wii quietly?" at 5:45 in the morning.  I truly should never complain about those too-early mornings. Every second counts.

Reality is harsh, and I am not ready for what is to come!!! And it is coming true right now to two families laying their Mito sons to rest while they are mere boys. Please focus your prayers on them in the weeks to come as the rehearsal with grief becomes hell on this earth.

Mitochondrial Disease Awareness Week

Welcome to yet another annual Mitochondrial Awareness Week! I say that with a tad bit of sarcasm because in our household, every day is awareness day. I know, very cliche, but it's so true. Every single day, at some point in dealing with my son who has Mito or following other families and praying for them during their children's struggles, I want to just go door to door or in public, I have this desire to start giving a Mito awareness presentation in hopes the world will gather, learn, and give. GIVE. That is probably the number one-A thing we need for Mito to become erradicated. Money fuels research. Money fuels awareness, but the awareness piece has to be in place to help bring in enough in research funding to make more dents in Mito.

How does Mito affect our household?
Not sure where to begin, so I will say that most of you are aware that Mito causes Garrett's severe constipation, delayed gastric emptying, sensorineural hearing loss, mental retardation, OCD, ADHD, Autism, anxiety, low muscle tone, developmental delays and failure to thrive.  Each day revolves around Garrett's care of his appendicostomy very first thing in the morning. It is his appendix brought out through his belly button with a tube in it for now. Later it will just be a hole or "stoma" where we feed a tube into him 6 inches or so and gravity feed 1000 mL of saline in hopes it manually flushes his colon. For now it causes him to poop, but not in the hopeful hour after the flush. Holding my breath this may possible work in the future. Next, it's get the kiddo to eat SOMETHING so he can take his meds. Not always the least bit easy when it's early. Next, it is morning meds: 3 pills to be crushed and mixed with one of the four liquid meds/supplements that make up the mito cocktail, along with a couple of gummy vitamin b3 pieces. Then pack his backpack to be sure he has extra undies, wipes, diapers, and pants. Keep in mind he is second grade age. Next, get him on the bus, which THANK GOD, he loves!!! Then it's getting his meds ready for the lunchtime dosing. On Mondays I can take his meds to school for the week. Each bottle (3 pills and two liquids at lunch) has to be in it's own prescription bottle and then directions alongside. And don't forget the 10 mL syringes for oral dosing!!! Fridays I pick up leftovers of the liquids and bring home to restock. He gets off the bus at 3-is and then it is two laxative tablets crushed into juice. Four p.m. is evening meds: three pills and four liquid meds, then one last med at bedtime. And sometime in there we are trying to get him to eat and drink..... Some days are better than others. I wake and change his youth diaper at least once nightly so he doesn't flood the bed. He has urine control in the daytime if his flush isn't all absorbed and peed out. At night he loses the rest of the flush liquid and usually soaks the bed. We have gotten good at layering chuck pads, fitted sheets and draw sheets. He has a developmental therapist/personal care assistant who can spend up to 40 hours per week with him, but that's pushing it for her. Garrett usually wakes between 4 and 6 the happiest person ever, but we try to get him to go back to sleep so we can all get some rest before the sun is up!!! Then it's flush, medicate, feed, and repeat. Every week, it seems we have an appointment for medical issues or maintenance. Then there's the everyday mental mess that is my son. He is loud, overwhelming to all of my senses, but incredibly cure and lovable!!!

While to those of you with normal kiddos may think the above description of our time with Garrett may sound overwhelming, I want you to know that our son has a more mild effect of Mito compared to so many other children and adults. Many families live in the hospital with their Mito kids, celebrating birthdays, Christmas and every occasion inpatient. Worse yet, many more families celebrate occasions at home but with the gaping hole of the lost child who has preceded their parents to Heaven because Mito stole them.

Tonight it's these families who have empty chairs at the table, empty stockings over the chimney and empty car seats in the minivan that I want to stick with you. Learn, love and GIVE. Look for ways to give at www.umdf.org

Blessings,
Clara-Leigh

Appendicostomy All Done!

I have done most updating on Facebook due to simplicity, but I do want to follow-up to share that Garrett had an appendicostomy on September 23. Surgery was longer than I thought it would be, but he also had his teeth cleaned, sealed and x-rays done. Teeth were in super shape! Great news!!

As for the appendicostomy, he was admitted to the children's hospital floor of St. Luke's the night before surgery around 2:00. After a few hours of questions, exams, more inquiries about his Mito protocol and docs between Boise and Seattle talking, an I.V.  and and nasogastric tube were placed so he could get hydrated well and have the NG tube to use to get 1.5 liters of Golytely down his tummy to get him all cleaned out. Friday morning he went to the O.R, after tons more precautionary calls and protocol measures were taken. He cannot have Tylenol, lacerated ringers IV fluid or a seizure med, Depakote. Apparently, he woke happily just after surgery but took a nap before we got to see him. This was Garrett's longest time under anesthesia, but he handled it well! He was fairly miserable the rest of the day with breakthrough pain, or maybe more sensory issues, but we kept ahead of his pain med dosing just in case. He has to get up and walk right times the very next days, and that was very tough!!! Then Sunday, his grandparents were ALL in town!!!' My folks live in our guest house all summer, but Grouchy's folks had been in Montana visiting friends, so hopped on a quick flight to visit. Just when it seemed a PICC line for TPN was going to be done because Garrett wasn't hungry or thirsty, he asked for food!!!! We came home Tuesday the 27th thanks to a hospital coordinator getting the home care supplies, pump, etc, delivered to our home!!! There have been and continue to be some bumps in the road, but we are holding our breath to see if this will work!!

Day of surgery, you can see the little tube coming from his belly button. In a month, this tube will be removed, leaving just the stoma and we will thread a tube daily. 

This was a week and a half post-op with some Versed on board so the tube that was acting clogged could be changed. His Tubie Friend, whose name and gender change almost weekly, is lying on top of Garrett. He had turned her mask into a bra before we finally got to see the surgeon!! Never a straight face for long around here!!

About a week after surgery, Shelby came by to bring cookies, and you can see Garrett is enjoying swing dancing and back to himself. He was actually back to himself about 4 days post-op!!! Amazing how fast these kids CAN recover, though not all Mito kiddos do. I should count this blessing twice daily!!

So each night, we use a Kangaroo enteral feeding bag and gravity flow 850 mL into his tube, which is through his belly button, using the appendix as a path to the cecum. In theory, this will eventually flush his colon. Not working so well yet, but time will tell. Surgeon has had to do scans and x-rays since surgery because Garrett was peering a lot but not having liquid through the rectum. Last night, before the flush done entering his body, he started having liquid stool, but nothing tonight. Scans with contrast showed that his colon is large and pretty useless. The saline was just going in and pooling in the cecum and then not moving through the colon. So he is absorbing it and just urinating it out. But tonight nothing, so I will sleep with one ear and one nostril open. Betting he urinates enough to float his mattress!!!! I will get up a few times to change him tonight in hopes he doesn't wake soaked because he gets so disappointed.

Should this not help him, the other option is to remove the colon and pull the small bowel through to the rectum and resection it. There would be two surgeries in that process. One would remove the colon and put a colostomy. So his stool would drain into a bag at a stoma site on his tummy. Second surgery a month or so later would close the stoma and pull the small intestine, that had been the site of the stoma, down to the rectum, create a j-pouch and then attach that to the rectum. So besides scars on his belly from the multiple laproscopy incisions, there would be no external sign that the plumbing isn't all normal. Some have success with this, but I would need lots more research and data and chatting with other parents who have been through this to make a decision of this magnitude. It's a much longer surgery than Garrett has ever faced. It is two surgeries. It is just a bigger deal than the appendiscostomy, obviously.

What else could be done? Well, I even talk about options because while the surgeon says to wait and see if this current deal works, I am not feeling hopeful in my  gut. Looking at his scans and test results with mom eyes, it just doesn't look promising. But who am I to say? Just going on gut feeling and the past couple weeks' experience. The other option is the undo the appendicostomy if it doesn't work and go back to how things were before. That's not cool either.


Garrett is back at school and acting himself!!! The largest blessing in this is that besides sensory issues and some pretty intense pain and frustration in the hospital for about 36 hours, Garrett has felt amazing!! Luckily, in a weird way of having to say it, he has no sensation in his colon, so even when backed up or if the laxatives cause any response that would cause most of us serious cramping, he doesn't feel anything!!! So he is a happy little guy, always melting our hearts and making me want this tummy mess to go away so he isn't bothered by it!!!

Godspeed,
CL

Asked For Discernment and Got It!

I am very thankful for the answered prayer for discernment. I know Garrett's ACE Malone surgery for his bowels as well as his teeth cleaning under the same general anesthesia, is scheduled for this coming Friday, but my soul was still not at rest. After a very frank discussion with his trusted surgeon, I wasn't feeling like I was ABSOLUTELY certain it was the right thing or time. Maybe it was just mom-xiety. You know, anxiety of a mom. But this past five days has shown me very clearly that something must be done, and with the amazing G.I. specialist on board along with a great pediatric surgeon as well as many Mito moms' experiences and after reading lots of studies and articles, it is clear that this is a good time and place and such. Garrett is now pooping so much he can no longer wear underpants but is back in pull-ups all day and his super-miraculous liquid-holding capacity youth diapers at night. And if he has meds dosed down any, he goes over a week constipated. I am fine with diapers at night. Not sure if that has potential to change, but the no undies deal is NOT popular with my sweet boy. He went as far last week to tell me he was going to pray to God to make him "all fixed like everybody else so he doesn't have to wear pull-ups." BROKE MY HEART!! He is truly realizing his differences, and it hurt my soul. And no, this surgery won't make him like everyone else exactly since most folks poop daily and don't have to spend an hour in the bathroom daily flushing their colon with a solution from the top down through a hole in their belly button. However, it will HOPEFULLY, if all works as it may, give him the the ability to be emptied completely like other kids on a daily basis, and limit his soiling by possibly 100 percent. THAT would be so so so so wonderful for him and for all of the rest of his daily care team!!!

It seems every time we have needed to go anywhere this past five days, there was poop everywhere on the way out the door...to work, church, restaurant, activities, and then there was often poop while in public, and the sorts that has it running down his legs as it has blown through pull-ups even. And he is frustrated. He hates it, and it is often hard to hide my frustration with it...not with him, but with the poop. Then of course, there are the behaviors associated with the ordeal where sometimes he tries to dig the poop out of his pull-up or scratch "down there" because it itches when poop is on him. Then, bless his heart, he will be in the house and I may be out of earshot or in the garage and he will come to find me to tell me he has poop, and it will have pooled and puddled wherever he has walked.... truly a trail of mess. It has, just this past week, been cleaned out of carpets in our home's bedrooms, living room and through the hall and down our carpeted stairs. It is just plain gross, frustrating and sad.

So there it is, sports fans, DISCERNMENT!!!! Or maybe simply put, it's a huge slap on the face to me so I can feel confident with our choice to move forward now. I am thankful my little hero is still so well and so smily and happy!! He is a real trooper, and I pray this procedure yields the best possible results. We will not know if it is "working" at capacity for about a month after he is home.

He will be admitted to St. Luke's Children's Hospital this Thursday to begin I.V. hydration and a bowel clean-out. Friday morning around 10:30 the dentist will begin his work followed by the surgeon. So I am guessing they will take him to pre-op by 8:30 or so. Nurse tells me he should be inpatient for 2-4 days post-op depending on how he is healing and eating and how well we are doing accessing and flushing the tube that will remain in the hole/stoma until the site is healed properly and the tube is removed to leave a hole. Some of our friends are planning visits to entertain and distract Garrett over the course of the few days, and the hospital has a Wii for Garrett to use while he is there. His grandmother bought him a new Lego game for his Wii, so the bribe is that one the I.V. is in, he can have the game. And his other Grandparents come into town Sunday for a few days!!! FUN stuff, but a bit more challenging inpatient!! Wish us luck there!! HA!!!

Please consider praying for this situation in the following areas:
Prayers for the surgeons and other medical professionals.
Prayers Garrett can drink the bowel cleansing liquid and will not requite an NG tube in his nose to get enough into him.
Prayers everyone in our family stays well, not exposing Garrett to bugs pre-op
Prayers for him to not pick up any bugs in the hospital
Prayers anesthesia is safe this go-round
Prayers the dentist has time to get his mouth REALLY nicely cleaned!!
Prayers the ACE procedure is very quick and successful
Prayers for Garrett's multiple sensory issues allow his little mind to settle down and relax some about all of the new things that will be going on both inpatient and learning to help him do the "flushes" at home daily.
And of course prayers for our girls as they watch their little bro endure yet another bump in the road.

We are so thankful for Garrett's good health these days!! Above all, please pray for those Mito kiddos who struggle more daily than our little hero has in a lifetime!!!

Godspeed and I promise to update as things happen!!
Clara-Leigh

Surgery It Is

I got the call from the surgeon today regarding the results of the "bead study," or the look at his colonic transit time. Over six days, Garrett did the following:

Day 1: swallowed tiny beads that were circles
Day 2: swallowed tiny beads that were circles with a line through the middle
Day 3: swallowed tiny beads that looked like Mercedes emblems
Day 4: abdominal x-ray
Day 6: Abdominal x-ray
So no, he didn't swallow the capsules with lots of beads. Rather my way-smarter-than-me mom opened the capsules per the doctor's advice (Garrett will not yet swallow pills or capsules), she opened them and discovered that he would eat them in his oatmeal....HOORAY!!! So the worst part was the extreme trauma of the x-rays. He has had many of them in the past, but he was an anxious mess of a crying panicky kiddo. It was horrifying. But he powered through both days, and we waited.

Last week, the surgeon's sweet nurse called, as did the G.I. specialist, to tell me his colonic transit time, or time for things to pass from beginning to end of the colon, was 70 hours. Normal is 30 hours. Uh-oh. So I thought, "Okay, so he is slow. We know that. But what does the surgeon get from looking at the images and studying the data???" What I saw on the Day 6 x-ray was that all three days of beads were equally dispersed throughout the colon. I wondered if they shouldn't be more grouped, like Day 1 all near one another farther down than Day 2, and so on.

Then today the surgeon called to discuss the findings. Here is the abbreviated version of his comments:
Garrett's colon is diseased from beginning to end. When kids have a section that is not functioning well, he would normally take out the bad part and expect things to improve. Garrett has no good parts. He doesn't feel like it is time to remove the colon and attach the end of the small intestines to the rectum, though someday that may be the case.  He thinks that for now he should leave the colon and do the ACE http://my.clevelandclinic.org/services/antegrade_colonic_enema_surgery/hic_understanding_antegrade_colonic_enema_ace_surgery.aspx (click link to read about it) instead of the cecostomy. The cecostomy was the button going from outside his body near his hip bone below the waist, into the cecum. I initially preferred that as it was about a one hour procedure vs. the ACE being 2.5 hours. With anesthesia already a riskier than usual deal with a Mito kid, I wanted to avoid the long O.R. time. The surgeon said he does the ACE in an hour and that he thought that having only a stoma (fancy word for "hole") inside Garrett's belly button where we thread the tube to get the enema fluid mixture into the cecum and flush his colon from top to bottom, was much better than Garrett having a button that can irritate the skin, leak, and get pulled out when he takes his pants up and down over the site. This makes sense. Also, I didn't want to have to go back to the operating room to reverse the ACE should it not work, but the doc assures me it isn't a big deal. If a button comes out from a cecostomy site, it is a mild emergency, meaning you have to rush the kiddo to the hospital and get the new one put in as soon as humanly possible. That would be a mess!!! I also asked lots of questions about his colon possibly getting better. He was not at all optimistic. I asked about if the constipation meds could have caused it. He thought not. But them my sweet mom reminded me that she thinks he has had this problem since he was an infant. Seems I had forgotten that even when exclusively breastfed, he would struggle with stool that was like dry clay. I barely remembered!! But she is right. The colon is a mess, and trying this procedure will be the next step in attempt to improve Garrett's quality of life as well as internal health. Having waste hang out in his colon like it does is nothing but a recipe for future disaster.

So looks like as of today, surgery will be August 23. Should be interesting since I am starting a part time teaching job and we have family coming in the 25th. Oscar's parents will get here two days after surgery, and that might be just the people to have here with my parents to encourage Garrett and help him move forward through recovery. Plus, I have some additional help at the hospital so I can teach my two morning classes without taking time off! Blessings abound!! I even think Grouchy will be home!!!!  I believe the distraction of teaching two hours on weekday mornings and being involved with the FFA activities will be a good outlet for my anxious energy, and I will be able to have the weekend off and be with Garrett as much as possible.

I am looking into how this will work, and it sounds like Garrett may be admitted a couple of days early for a hospital clean-out of his bowels. That is bound to be a barrel of monkeys!! My saintly mom will probably take the shift in the mornings while I teach. I have had so many friends and family inquire about times and dates and such, in hopes of dropping in to visit/distract Garrett. All I can say is , "PLEASE BRING ON THE DISTRACTIONS!!!" I will post a surgery time when we have one. He has asked for his dog, Sammy to come stay, and while I think staying overnight isn't an option, I am sure we can take her for a visit!! She adores him!! The big challenge will be keeping him in a room for several days. I hope he still finds it novel to have a television and remote on a long arm that comes to his bed!!! PLEASE!!!

So I ask for your prayers that this is the right thing at the right time. The surgeon said we could wait, but this is going to be what's in the future, so we can do it now and get it healed and hopefully working to full benefit, or we can continue to fight the battle medically through meds and know this needs to get done. Apparently, the ACE has changed so many lives for the better, and I hope it gives Garrett what he needs. I guess now is as good of a time as ever. I pray we are making the right decision!!!

Godspeed and many, many thanks!!
Clara-Leigh

P.S. The feeding button is not recommended at this time since when Garrett is having bowel movements more routinely, he is eating more....PRAISE!!!! However, in this photo, you can see how tiny his little arms are.....but how great is his smile and love for his furry companion!!!!!

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

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….

Garrett's spine MRI showed:

ABSOLUTELY NOTHING!!!!

Ainslee comforts Garrett in recovery after his MRI. Garrett has the best sisters in the world!!!

So you may assume that is great news, and I guess in the big picture, it is good news. Great, another set of weird things going on and no physical/test evidence to explain it. Except.......the G.I. specialist called with MRI results this morning and says she believes it is as articles I have shared with her. His nerves in the colon are not properly working. Wouldn't be a big surprise since the nerves in his cochlea of his ears are already trashed. So we are right back at the beginning but were hoping for an answer. But we cannot get an answer on the genetic cause of the Mito, the brain MRIs look normal, so there's no visual reason for his delays and mental issues, and now the tummy. Nothing obvious to see on a scan. We can only guess, once again, but then again, that's lots of trademark Mito cases for ya!!!!

As I type, he is playing the Wii and I hear him filling up a pull-up. This will be the first of 7-9 of these blowouts for today since he didn't poop in the past 48 hours. Laxatives do nothing anymore, but we have been instructed to give them anyway if he goes two days without poop. So we will try that. We have added more soluble fiber and made his Miralax dose earlier in the day, at noon instead of after school. The urologist wants him drinking more at school, so he has a certain volume of daily liquid intake we shoot for, hoping to get 2/3 of that in him before lunch. When he has a bowel movement, he is always standing or lying down, but never sitting or on the toilet. His G.I. specialist calls what he has coloporesis, or stopped/delayed movement of the  colon. Garrett has "sandy poop" frequently, where it takes over a dozen baby wipes to scrape the sand off of his bum after the poop is gone. This is because he has so much that sits in his colon that it allows sediment to settle,  and when conditions are just right, the huge pressure of the weight of all the poop above the last two turns of the colon will force the sediment out also. It is crazy! 

What was most helpful is to rule out problems on the spine MRI. It was thought he could have a tethered spinal cord. Nope. So where do we go from here? Nowhere! That's not entirely true. The G.I. specialist said to lay off all attempts to toilet train for bowel movements and come see her in three months. Maybe at some point, she says, he will take a mental turn and want to try on the toilet on his own. We had him in poop therapy, and he learned to gain strong control over his pelvic floor and pushing, but that never yielded results. So now we wait, but it is good because we also relax some. We were in limbo rather to continue potty training-type exercises at home and in therapy for poop, but no more!!! So he is off the hook for now!! And it is truly a relief for me!!! It's one thing to train a child to do something they are capable of doing. It is entirely WRONG to be training a child and pushing them to do things of which they are not even capable. And he may never be capable in this area. I know God is taking care of my little boy through the amazing medical team Garrett has between Boise and Seattle!!!

Godspeed,
CL

Happy Valentine's Day From Dr. Urology!

Today was Garrett's first urology appointment, ever. His G.I. specialist has an MRI scheduled for February 21 under sedation and wanted Garrett to see urology before then in case the urologist wanted any testing done while Garrett takes his "long nap." The appointment was uneventful, not!!!!

First, Garrett walked into a pretty large exam room with lots of medical equipment and a strange-looking potty made of PVC pipe with a sort of funnel into a bucket deal beneath it. Garrett was instructed to pee in the toilet once the nurse began timing him. Hhhmmm. He was a little anxious about this new-design toilet, but he soon emptied in style! Next was the office ultrasound. He freaked. I mean really freaked. He was making terrible sounds, trembling, frothing at the mouth, and producing quart-size tears. It was sad. Then it was frustrating. Finally, it was maddening. He has had this same thing done to his chest annually since he had a heart issue that was fixed with a heart cath. I finally had to man-handle him onto my lap and lay on my back and eventually get him onto his back on top of me. Once the tech started the procedure, it was no big deal. In fact, Garrett asked if he could do it again!!! Well then he DID have to do it again, in the lower floor of the building we were in with a better machine. We had to waste three hours before then, so we went to Chick-fil-a and "Christmas Kreme" Donuts. We ran a few errands, then went back to the hospital for ultrasound #2. He freaked AGAIN!!! But this time, Sammy, his service dog, was in the room with us, and he "showed Sammy how to lay on the table." Whew, never thought a dog could be that helpful!!!

The urologist said Garrett has no blood or protein in his urine. He has had both in the past. We talked lots about his nighttime wetting. She was going after all these ideas to work on it, and honestly, I am just not that concerned!! I have figured that based on his developmental delays and other issues, he may just take years to stay dry at night. She wants his Miralax dosed at noon instead of after school. She wants him to consume a total of 6 cups of liquid per day, with half before noon, then another 25% after noon, but no liquids 2 hours prior to bedtime. These are huge changes, seriously.  We will do our best!! Urology will contact us about the more in-depth ultrasound probably tomorrow to let us know if they want to add-on tests during the MRI.

All-in-all, it was a good day. We left Meridian to go back to the developmental agency RaeAnn works through for their Valentine's party. By then, Garrett was pooped. He had a very slight temp today and was a bit congested all day. His fuse was pretty short overall, so I was glad RaeAnn brought him home for an early bedtime while Oscar and I enjoyed our church's Valentine Dinner. Addie helped babysit at church, and Ainslee chilled at home with Garrett and RaeAnn.

Life here has been very busy, thus the infrequent updates here. I am speaking at our church's womens retreat in a couple of weeks, so many nights have been spent writing, digging in the Word, and meeting with the AMAZING Christian sisters who have carried me through this retreat-prep process. Last night was especially cool getting to play guitar and sing with a lovely lady who will be in charge of the retreat music. I am so excited about this year's message!!!!

Addie and Ainslee stay very busy with dance and gymnastics. Addie is prepping for dance company performances and competitions while Ainslee is working out more at the gym and at her first meet of the season and first REAL gym meet in her competitive team career, qualified for the Idaho state gym meet!! Yikes, it's all so exciting!!

We have worked with the principal of the local elementary school to start a reading program called SIT, Stay, Read. We take one of our dogs in each Monday for an hour, and four different first graders who need some extra support in reading get to read to one of our dogs!! The first week, Sammy went, and then this week Eli, Addie's Pug, went. The children are responding beautifully!!! In fact, we have been asked to bring two dogs next time so we can handle 8 readers!! I am so excited, and Addie and Ainslee are enjoying helping other kiddos, too!!!

Blessings to each of you and your Valentines!!
CL

DRY BED After Night One of The Great Experiment!!!

Report:
Dry bed after night #1 with youth diapers and washable under pad on Garrett's bed. Better yet, the pad wasn't wet, and that diaper was AWESOME!!! It held the urine with its larger area of absorbency!!!!
This is the end of the report!

One Happy Mom,
Clara-Leigh

The Great Experiment Begins

Disclaimer: 
This post is not about genetics, medical treatments or deep emotional issues. It is about one thing....... KEEPING GARRETT'S BED DRY AT NIGHT. So go no further if you don't want to know all about it!!!

The Great Experiment Begins!!!
Garrett is not able to use the toilet for bowel movements at all. He is pretty much potty trained for urine during the day as long as he is reminded to "go." But the night is another story. He urinates so much at night!! Yes, we have cut evening liquids. Granted, he is usually in bed about ten hours, but still, the kid urinates a LOT! I have tried waking him up at night and sitting him on the potty to urinate, but nothing ever happens. Some nights I change his diaper after midnight. So put a diaper on him at night, and that's all solved, right? BIG NO!!!!!!

Let me also mention that 6 out of every seven mornings, everything on Garrett's bed has to be washed. I have already given up using a flat sheet on top of him because he likes soft blankets, and one less sheet to launder almost daily is huge!!! But when he is wet in the morning, he has his mattress pad, his soft blanket, his fitted sheet and usually this monkey pillow/blanket thing he loves to sleep on all soaked and smelling badly. Because he has a full-size bed (so we can lay down with him when needed), it's a good bit of bedding, resulting in two loads of laundry for his bedding 6 days per week. And that's two loads daily before I can even think about getting to the rest of the family's wash!! And yes, we have a plastic mattress cover too.

Pull-ups are what his medical supply company recommended last year for nighttime, but they never worked. They are not designed for a large volume, and Garrett has little bird legs, especially his thighs, so the pull-ups gap terribly and then urine runs right onto the bed. So then we were sent the size 5 generic diapers by medical supply, and while that worked for volume about half the time, Garrett has outgrown then completely, so that's out. We started ordering these pads that adhere to the diaper on the inside, like a giant feminine napkin, but he fills that and then urine overflows all over the bed, causing more bulk causes more gapping at the thighs, and then the pee is totally bypassing the diaper. So the medical supply company recommended these disposable pads to also place under Garrett at night to catch excess urine. Sounded like a good plan, but they are really thin, move about the bed when Garrett moves, are too small in area, and are cheap plastic that wakes him when he moves around on them. One night last week, I taped two of them together and then onto the bed, and Garrett was a mess of tape and plastic the next morning.....and the bed was soaked. Strike out again!! Then three mornings ago I saw he must have gotten up in the middle of the night and COVERED his bed in the pads.....must have been six pads, but the bed was soaked and the pads were all over the place in the covers, completely dry. The largest size of Huggies Goodnights will likely fit okay for a month or so more, but then urine usually leaks around those also, and Medicaid will not cover them.

But tonight, tonight my life was changed forever!! I had called to ask the medical supply company for some washable pads to lay across the bed under Garrett. Sounded like it could work, maybe. I even had one of the service providers for Garrett's therapies tell me that I could get two washable pads per month. Each is 32 inches by 36 inches. She also said some parents sew two together so they lay across the bed onto the sides of the mattress and seem to stay in place that way. RaeAnn, Garrett's developmental therapist, got excited about that idea and also mentioned sewing Velcro to the sheets and the bottom of the pads to keep them in place....BRILLIANT!!!

But it gets better!! I drove to the supply office to pick up the two reusable pads and for at LEAST the 10th time in 20 months asked if there was any way to get a diaper product larger than baby diaper sizes but smaller than adult diapers. For the past almost two years, I have asked this every other month, and I have always been told that there is nothing between an adult small Depend-type under garment and a size 5 kids' diaper. But Miss Andrea (forever my hero!!!!) at the supply company said, "Why yes, we do have a youth diaper for waist sized 18 to 22 inches!" I almost cried. Literally, almost cried. My eyes welled-up with tears, and I almost hugged Andrea!!! She brought out a pack, and I opened it, and it was one of the most beautiful things I have ever seen and held in my bare hands. Seriously!! It has two waist tabs on each side and a HUGE area of absorbency both side to side and front to back! WOW!! But even better is that they are covered by Garrett's Medicaid. I say this is even better because many times with Medicaid, things that are a bit off the beaten path are not covered. So we could not get larger disposable pads to place under Garrett at night covered, for example. They cover one type, that's all. Now hold the phone here, because I do NOT want to sound the LEAST ungrateful for the supplies Medicaid covers for Garrett. I am thankful for each item, literally!!! And yes, we pay for lots of things it does not cover and have been doing so for years. In fact, none of this was covered at all in Louisiana before we moved to Idaho two and a half years ago. But this was a huge discovery. Now on the other hand, I am still not sure they no one could find these for me within the supply company before today. But that's water under the bridge and MANY loads of laundry that have been washed. Maybe I had to be desperate and sound extra-deranged to get someone to look for them. Today was MY DAY, people!! I also can still get the small under-pads, which I will, because every time Garrett has stool, it takes one or two of those to place him on to change (there is no way to describe his poops with words. You would have to change one.....but if there is one, there are usually 3-8 in a row within an hour, and the consistency is, well, it gets EVERYWHERE), and we can use them for back-up when he is sick at his tummy or we have no washable pads clean. He is no longer like a baby where you can change him on a little cute blanket or a towel to save the furniture or bed. It is vile, horrible stuff coming out of his little body, and we do NOT want that mixed into our laundry anymore than we already have it because of the clothes he soils when he poops through the diapers or pull-ups.

So I walked out of the medical supply store beaming with joy!!!! I felt I had graduated with my doctorate or won the Super Bowl or something. It was so exciting. Even better, Garrett wasn't quite asleep when I got home tonight after the pick-up of supplies and Ainslee's gymnastics. So I went in, showed him the new diapers, put a new diaper on him, and put one of the washable pads under him for the night. He was pretty excited since I had been telling him about the new under pads because any change can throw him for a loop. He was all smiles!

So tonight is the big night!! If all I have is one load of laundry....the pad and the blanket and maybe the monkey, in the morning, I will be a happy gal. Cut morning laundry in half!! Maybe then Grouchy will have some clean boxers!!!!

I almost cannot sleep tonight because I am so excited about these new finds!! Roll your eyes if you like, but you can't imagine (some of you can!) how this may have revolutionized my mornings and possibly Garrett's self esteem, and that's important also!!

Godspeed,
Clara-Leigh

G.I. Appt, More Tests Ordered

We saw Garrett's pediatric G.I. specialist yesterday in Boise. First of all, I love this nurse practitioner he sees!! She is kind, listening, understanding, and very curious. She investigates Mitochondrial Disease on her own in her spare time and has even referred kiddos out who have ended up with Mito dx!!!!

So here's where we are:

1. Poop therapy is over. Garrett has gained the ability to properly use his pelvic floor muscles to the satisfaction of his physical therapist he has seen since October. However, even though his muscles are cooperating, no poop comes out on the toilet even with use of lots of laxatives to help him time the poop. Seems the laxatives no longer work on him. They don't even cause any cramping.

2. G.I. specialist has read lots on Mito and believes that we should hold off on any pressuring Garrett to poop on the toilet. She thinks there may be nerve damage or nerves not working properly that are causing things above the internal sphincter not to work. He has no control over this......and may never.

3. G.I. specialist has recommended some testing, and we will start with an MRI to rule out a tethered spinal cord. Likely that is not the issue, but she believes it is worth ruling-out. She thinks his poop issues may be like his ears....nerves not working properly. And if the nerves are shot, there isn't much we can do about it.

4. G.I. also wants us to see urology since Garrett has days of leaking urine all day and then still soaking his pants multiple times on one day, then going on the toilet fine for days. Since the MRI will be done under anesthesia, G.I. says she would like to see if urology would like to add on any testing in the nerve area for Garrett's issues with urine.

Looks like the MRI is currently scheduled for February 21 with the urology appointment on February 14. Lovely way to spend Valentine's Day. Sorry, I am grumpy!! Sort of how we spent New Year's Eve camped out on the floor of a small bathroom with Garrett hooked up to the poop therapy computer trying to time a poop for bedtime. Fail.

So I feel in my gut that we are about to give up on the whole poop deal. Or maybe I am hoping we can give up.....not on Garrett, but on pushing him to do something I truly do not think he has the ability to do.

I just would like us to have a focus. Or not. Let's either keep pushing these therapies weekly, taking him out of school, burning gas, spending one day per week out of pocket and get this toilet training done. But therapy said it's all they can do, and nothing has changed for pooping.

I am okay with someone telling us Garrett will just be in diapers forever for his stool. I really am. No,
I'm not. Well, I am from the point of Garrett needing to be let-up on if he cannot poop on demand ever. But it is a HUGE milestone give-up. Who am I kidding. My son is seven and a half and cannot poop on a toilet. Should have had more realistic hopes, I guess, but then I didn't want to "give up on him."

The reality keeps sinking in more deeply. Gosh I love this kid. I will change diapers forever, live inpatient with him should that time come, and give up every fiber of my being to keep him happy and healthy. But hearing of nerve loss and such is truly disconcerning. What's going on or NOT going on in his little body, and is this progression? It makes sense if he has nerve damage in his inner ear that he could have it in other areas. Simple.

Goodnight.
CL

NuclearMitome Test Results

I will go out on a limb here and attach an image of the results portion of Garrett's mtDNA test results in the even they can help anyone else in any way. Bottom line is that there was no conclusive genetic explanation for mito, but Garrett is a carrier for 3 variants of genes with autosomal recessive disease inheritance. We have yet to see Dr. Saneto, and he is not getting the results until Monday morning. It will be very interesting to hear his take on this as these 3 variants are possible to create really scary disease if they are passed along. Needless to say, our two daughters will need testing before they begin a family AND will need counseling from a geneticist.

I will say that the little internet research to see what these variants can cause if they are present in disease are SCARY.

My question is whether, even though these variants "shouldn't" cause disease, COULD they somehow allow Garrett to be experiencing the symptoms he has??? I know, probably not. But it is still worth knowing!!!

So check it out if it interests you, and I am open to ideas, sharing, my opinion, etc., if you want to research or have an y experience with these variants with your testing!!

Godspeed,
Clara-Leigh

My First Polar Plunge! Burrrrrrr!

Today I embarked on a new adventure! A polar plunge to benefit Make-A-Wish Idaho. Garrett's wish of meeting Mickey Mouse and riding a train at Disney World became a reality this fall, and ever since we learned his wish was to be granted, Grouchy and I have wanted to try to repay our trip plus pay it forward for others. Well, today was the first fundraising event where we have raised money. Up to $500 just soliciting donations today!! We are so excited and thankful!!! We have taken Garrett to a fundraiser as a Wish Kid, but we were not the entity raising the money. I was not sure, with the recent very cold temperatures and snowfall, that I would feel comfortable driving up to the Plunge site, but as of last night, it was a GO!!! I had a few friends who expressed an interest in plunging with me, but their schedules didn't cooperate, so I called one very dear friend who I figured would not plunge but would hold my towel and take photos. My sweet Tass said yes, so we took off this morning to Lucky Peak Reservoir. It was snowing on our way, and temps were around the low teens. We arrived and were surprised how many other idiots were up for the challenge!! Case in point.....I am pictured below with some new friends:

This is a shot taken from the ladies' changing tent. Yes, there was a large, heated tent for us to use for getting undressed and dressed!

And here is my dear buddy Tass who later today, while shopping, bought a magnet for me that says: Friends don't let friends do stupid things....ALONE! How fitting!!!! She stood there and froze while watching the madness. It wasn't until the drive home she told me she helped several men get their shoes on as their hands were frozen stiff!!! She's amazing like that!!

I took a photo of Garrett to share with the Wish staff and to anyone who wanted to see an actual, real kiddo they were helping. I asked these first-time plungers why they were doing it. They said they thought it was a wonderful cause and a fun event, so they had raised money. So I asked them to have a photo made with my Garrett, and they did. Aren't these three girls beautiful!!

Today was fun! Everyone there was happy. The resounding farewell I heard was, "See you next year!" Many people only see each other there annually, and make it a point to high-five! There were a few people water skiing and wake-boarding. All ages were represented, and the event has a history of raising about $50,000 during this event. I find that impressive, and what a great way to kick off the new year!

If you would like to make a donation in Garrett's name, send a comment here, and I will send my address to you. Checks should be made payable to Make-A-Wish.

If anyone wants to join me next year, I would love to have a team!! It is truly an adventure, and no, it isn't THAT COLD......YES IT IS!! I went up to my chin, but next year I vow to go all the way......with a few friends for peer pressure!!!!!

THANK YOU AGAIN, Make-A-Wish Idaho!!!

Clara-Leigh