Transition to Adult Residential-Style

 Garrett is 18 years old. 

Wow.

Cannot believe I get to type this!

So many things have occurred, and I’d like to outline them all in great detail, but I feel it’s time to dial back now that he is an adult and has the right to decide if and how HE wants to tell his story. I will share some absolutely monumental happenings that I know he is proud of, then I will likely be pretty scarce here, even more than the past several years.

If you need evidence of God’s providence and power in a person’s life on earth, stick around here for about a minute and you’ll see it first-hand.

Early in 2023, Garrett advocated for his appendicostomy tube to be removed. His extraordinary pediatric GI listened, gave him instructions to follow for 6 months and if he followed her direction exactly and didn’t have to be flushed for 6 months, she would remove the tube. He won!!!

Soon after that he advocated for his g-tube to be removed for good, the GI gave him very specific goals of weight and finishing growth hormone and HE DID IT! No more g-tube.

Then this week he began a residential adult transition program in Connecticut!!! He seems to be the happiest guy surrounded by “FRIENDS” like him who are all moving forward gaining skills for adult independent living and employment!!! Hardest thing I ever did was leave him there, but that was all selfish mom stuff!

I’ll share a few pics, then if anyone wants more info on the program he is doing on the East Coast, email me at Aaejgmom@gmail.com, and I’m happy to reply and share!

God is good! It’s been a very challenging 18 years for our son, but he is a hero and the bravest, kindest soul I know. There’s always some kind of hope even if we screech right up to what seems to be complete hopelessness. I stand in gratitude and awe of our son.

Photos are from day one at his residential adult transition program, or his “college!”

Thank you for taking time to peek into our journey. Happy to be a resource on the experiences we have had if we can ever help others.

Rock on, Garrett, and welcome to being an adult. You’ve got this!!

Clara-Leigh

Growth Hormone Deficiency

 Garrett is fifteen and a half now. He is the kindness soul I’ve met in this life. He’s always loved music and rhythm, but he has become an incredible drummer and is playing with our church’s youth worahip band every Wednesday and Sundays and taking lessons from an extremely talented musician and worship leader who God placed so beautifully along Garrett’s path. Thank you, Jason Liest, and thanks me to Curtis, our friend who literally “found” Jason at a hard sale!

Where to begin? Let’s start with the good. The good is that Garrett is thriving at school, in drum lessons and playing, and loves to drive the UTV and his deck-less lawn mower. He still adores his dog, Sammy! He is sweet...to others. 

While he is kind to others and even says he wants to be a caregiver someday, he is not kind to himself. The past year has been plagued with nothing short of self-abuse. He hits himself in the face and loses his cool with himself screaming profanities at himself about things he isn’t even doing. Recently his psychiatrist has determined he has Obsessive. Compulsive Disorder. The obsession is him thinking that he may make a mistake or being frustrated when he has to be reminded to do something or cannot keep an electronic charged to 100%. The compulsive is these terrible outbursts that are totally aimed at himself. 

In the months of working to discover the answers to more “whys,” we were referred to endocrinology as we were becoming concerned we were not seeing signs of puberty and were seeing these behaviors escalate. His pediatrician was concerned with his slowing of growth, only one inch of height in the past year. Endocrinology ran some bloodwork and it showed very little hormone levels, so stimulation testing was ordered, three types. Garrett was very brave as we checked into a children’s chemo and infusion center and spent the day with an IV and two infusion drugs and two injections were administered throughout the day. He experienced about ten minutes of throwing up, but otherwise it was uneventful. About a week later I received a message in the My Chart app from his endocrinologist letting us know the results are “reassuring,” so we need to follow up with him in six months.   While the news that the test results should be relieving to us, it was not because we hoped that Garrett being “stuck” in that pre-puberty state where most of us wanted to just vanish from the planet, that wasn’t the case!

Then yesterday I received another My Chart message explaining that two of the three stim test results were normal, his third was in fact not! Garrett is not making enough Growth Hormone. Next step is an MRI with and without contrast followed by two years of growth hormone replacement therapy which is an injection daily.

We now work to ensure our mitochondrial specialist, Dr. Russell Saneto, is in communication with the endocrinologist regarding the new information and plan. 

My heart breaks for Garrett. He has a g-tube, an appendix parody with a chait tube (I need to blog about that to share that addition!) that stays in his belly button, he hates shots and needles, and this is daily. He will adapt, but goodness I wish this kiddo would get a break!

God only knows the why and the opportunities Garrett may have to help others, and we remind ourselves of this almost daily. Moms and dads, stay strong. Listen to your gut feelings, and know you’re not alone!

I’m Garrett and I’m 14!

I’m Garrett, and I’m 14!!
Do you ever hear words that stop your heart and make you hit your knees in prayers of thankfulness? Hearing Garrett say his age is that phrase for me. How can time fly like this? How were so many days so incredibly long, but in hindsight now so so short? Above all, how is it we are so richly blessed or perhaps even just lucky that our kiddo with Mitochondrial Disease is not just surviving, but THRIVING.
So much has happened since my last post! We have sold a business, started another or two, I began working part time, then full time, and goodness our oldest kiddo heads to college for her freshman year tomorrow! Now seems to be a season of reflection, blessing-counting, exciting new perspectives, and frankly sometimes it is, “Exactly how in world did we survive this, that or the other?”
I do plan to spend more time here in the next year, but meanwhile I just want to drop in a few photos to share Garrett’s sweet smile and handsomeness!!! I’ll return to some of our experiences navigating Mito through school, church, camps, and all of the management of increased GI and enteral feeding support through these past years. Bottom like is that our little boy (teenager🤭) is complicated but worth every single ounce of our energy and persistence!

I Didn't Know Where You Were

Monday, Garrett's 14 year old sister, Addie, had taken the ATV down the driveway to hay some of our cows. Garrett had ridden along, but then he ran back to the house instead of waiting for Addie to bring him back. I heard Garrett come back into the house, but I didn't think much of it until Addie burst into the house out of breath repeating a few times, "Garrett, little buddy, I was so scared when I couldn't find you! I thought something happened to you! I didn't know where you were!"  That last sentence: I didn't know where you were. Addie was red-faced and a little breathless for a minute and sincerely had worried something bad had happened when she didn't know where her Garrett was.

While this may happen in lots of homes and has happened before here, this time it hit me in a different place. It hit in that place where the mind wanders down a path it doesn't intend to travel....one where things are worse than they are today. One where Garrett isn't still here and Addie is saying she cannot find Garrett and is scared because his is not with us.

Lately, Garrett has been doing well overall. He is growing again with the increase in his tube feeding volume, continuing to be very active, reading well, and getting back to school. But there are a few new things going on. He has had ulcers in his duodenum, more vomiting this year than ever in his life, and the need for increasing from four to six cans of formula, all concrete proof of how much intervention has been done to keep him healthy.

His tenth birthday party was a riot! But it was a milestone. I know we cannot solidly predict the future in most cases, but his mito doctor has mentioned Garrett "Maybe making it into his twenties, but things being bad by then." Ten was halfway to "the twenties." While it's perhaps a morbid deal to realize half has passed, I am overwhelmingly thankful for the first half, and how if it is, in fact, half past, he has improved so tremendously. Optimism vs. pessimism. And I choose to celebrate ten years...the toughest of my life, but also knowing tougher days lie ahead. Much tougher. I relish the growth, mental maturing, learning, and just the perfect love Garrett is to everyone he meets. I realize the miraculous network of love and support that we have had showered onto our family by relatives, friends, medical professionals and complete strangers. Some families face so much negative, but honestly, its been so rare that we have felt that, and those few bad memories are completely replaced by the millions of great ones.

I replay Addie's panicked tone and breathless searching over in my head. Not on purpose. Maybe just a whisper to remind me to look up and be thankful because we very much have a very living and loud ten year old little man keeping us always on alert. The love his sisters have for him is beautiful and scary all at once. That deep type of love leaves the heart venerable to the worst possible pain. But it has been and will be worth it. And if Garrett proceeds me to Heaven, I, in fact, will know EXACTLY where he is.

Hole in the Jeans (and Photos!)

In many posts I have shared milestones or even inchstones in Garrett's nine years to date, and I have another today! This week, Garrett achieved the very first hole in the knee of a pair of jeans! I say "achieved" because to Grouchy and me, it's just that, a monumental achievement! Most of us with typical kiddos rolled eyes or adjusted budgets when we saw "holy-jeans." It meant another trip to the store or turning them into play-clothes. But not our boy! We may wear these to CHURCH every Sunday until he outgrows them! We are that excited! To us, this means Garrett is finally being rough and tough enough to wear out fabric without outgrowing it first, even. I just had to share!

And then this happened...
We attempted to get a good photo for Christmas cards this year, and we had success, but meanwhile....

Godspeed,
CL

Where Do I Put All This Stuff?? Medical Supply Organizing

This Month's Organizing Method

I attempt to chime in on Facebook groups and message boards.when I see questions about medical supply organization in attempt to help others skip the 543 revisions I have made to our medical supplies over Garrett's lifetime! My methods aren't perfect, but today, for me, this is working well! If you have suggestions or photos, please share! I have learned so much from other parents willing to share their ideas! Since it isn't only me but also my husband, his sisters, grandparents, and multiple caregivers using his supplies, it is imperative there is a place for each thing and simplicity in the chaos!

In the kitchen to the right of the sink, I have one cabinet I use to hold all medicines and supplements, as well as supplies I use daily in this area of his life. 

Top shelf: extra glycerin (appendicostomy flush), a couple of extension sets (feeding tube supplies), tape, and a couple of weekly pill organizers. 

Middle shelf: plastic bins labeled for syringes, caps, pill bags, latex gloves and medicine measuring caps. 

Bottom shelf: Medicines and supplements, including refills and extras

Taped to the door: Top-  ziplock with an extra g-button MiniOne along with syringe and instructions.

                               Bottom- schedule including meds, appendicostomy flush, g-tube feeds, and bedtime

   

Below the cabinet I have a very cheap wooden shelf made to go over a sink, and on that I have three plastic bins labeled for his daily meds 8 a.m., noon, and 4 p.m. To the right of those are two tin boxes with chalk paint that I picked up at Michaels craft store using a COUPON!!! One is for tube feeds and one for his appendicostomy flush. Below the shelf I keep his Infinity feeding pump and charger. Then I purchased this adorable wire basket/tray, and I use it to store several cans of his formula, Pediatric Compleat, his thermometer, and a couple other small things I am using long term such as a container of toothpicks for digging out contents of three capsules he needs mixed daily. And then of course there's the sign threatening a $5 charge for whining. (That's intended for ME at six in the morning when I tend to be grumpy while mixing meds ;))

Here's a photo showing the cabinet with the feed and flush and med supplies altogether. I have found that right by the sink is best as it doesn't get hot there but I can easily access very hot water for rinsing tubes and syringes.

If it's possible to have a crush on an inanimate object, here's mine!! These metal bins with chalkboard labels......oh I'm so excited about these! This is the one I have for his g-tube feeds. I keep two 60 mL syringes, as well as his tubing(s), the latest ointment or cream to keep his stoma looking good, and Q-Tips or the generic equivalent for applying the ointment or cream. I place a small washcloth at the bottom of the box and then use another to lay over the contents to keep from getting dusty or having any critters land on it!

Shhhh! Don't tell the feed box, but I have a crush on the flush box also!!! In this I keep a glass measuring cup that's probably more for alcohol beverage measuring but works great for this, a bottle of water, and glycerin...all flush supplies. I keep the catheter and gravity bag in the bathroom on an IV pole and the rest of those supplies in another place I cannot WAIT to share with you!

Today I read a post from a mom whose kiddo just came home from the hospital with a g-tube. She was asking what the favorite, important and essential items are. Well, here are some of mine!!!
Pill pouches have revolutionized my life and helped me maintain the remaining few percent of my sanity. I have some pills that break down if they are not out of air and are in a container with other meds, so I can use these tiny baggies to separate them! Best yet, they have a writable area!!!!
Measuring caps are also a very vital part of measuring, mixing and drawing into oral syringes. Don't tell anyone, but I just paid over $100 for this type because I could only find them at COSTCO in the box with one of Garrett's supplements, and washing a few out and using for months wasn't working so well. Nevermind my son's closet has a bag with most of the 1,900 I had to purchase at once, but I am so way less stressed knowing I have these little cups with the black writing. They are truly the easiest to use! The clear ones with raised writing did not agree with my eyeballs!
10 mL syringes with caps are a must as we use six per day but do usually reuse them after washing in hot water.
1 mL syringes are a staple for one supplement he takes twice daily. He takes 0.123 mL of this supplement, and these syringes get us closest. We get them with lids too, of course!

And at the end of the hall I repurposed this school storage shelf when the khaki bins were on sale for $4 at a local store!!! I store cases of formula on the bottom two shelves so it keeps the shelf stable.

At Michaels in the one dollar bins I found these cute little chalkboard signs complete with decorative twine on them! I used a chalk pen to label each bin.

Here are the 10 mL syringe boxes in case you are trying to find a serial number ever!

Pill pouches are at WalMart, 50 of them for $1.50. Last week I cleaned out the supply in Caldwell, Idaho's WalMart. Sorry! These even have some color on them. Gotta try to appreciate the fun where you can!

Oh I forgot to mention my favorite pill crushers. (Shortly, I may reach a place in life where I can admit I am thinking of buying a few more to hoard!!!) What's best is the fact that in the very top of the crusher, there is a compartment where you can store pills if need be! It sometimes has come in handy, and I labeled each compartment. I find these in our small town grocery store. It has raised teeth in the grinding area that beat all the other smooth crushers I have tried.

Garrett recently became continent day and night, so we were able to allow his closet to be for clothes instead of stacks and stacks of diapers, chucks, sheets, wipes and so on. So now we do use half of the bottom of his closet for storing cases of enteral feeding bags...and of course the 1, 878 of the original 1,900 measuring caps! Did I mention how much I love having these??

So there's how we do it...today. It's always subject to change! I do want to mention that I spent very little money intentionally on this organizing project. I had the large shelves and some of the bins. I do spend some cash annually on syringes and caps, but I doubt I will be buying measuring caps for a few months! Sharpie markers are a staple item, and I find that the rolls of medical tape that get down to the last couple feet work well for labeling things. Just today I talked to a medical supply company about ordering pre-printed sticker labels with Garrett's name, my phone number, and 8, noon, or 4, each in a different color, for labeling the sandwich size ziplock baggies where I place his daily doses of meds for each time. Then the pill pouches go inside that sandwich Ziplock. Works for us!

If you have ideas or questions, ask and share!!! I love learning new storage concepts and efficiency steps!

When possible, I have found some peace (and even a tad pleasure) in accessing Garrett's things once I had them looking nice and very organized. Prior to this arrangement, I felt I had some places organized and some not, and nothing was truly in the simplest location. It took many revisions, a scary srip down the stairs with a large shelf, and a couple dives into my favorite crafty stores exercising MASSIVE amounts of self control and restraint to gather some of the items that helped, such as the mesh basket, plastic and metal bins, and the cheap dollar store sink shelf. It also has taken YEARS to find the online medical supply companies that have the exact syringes with caps and the measuring caps.

Good luck!!
Clara-Leigh

NO MORE DIAPERS!!!!!!!!!!!!!

For the second time in about a week-long period, I get to say something here that I didn't ever truly KNOW I would get to say!!

GARRETT IS DONE WITH DIAPERS!!!

At age nine, we have been able to do his appendicostomy flushes nightly that produce a bowl clean-out so that he is continent all night and day, but he still woke every morning with at LEAST a very soaked diaper, and 6/7 nights a soaked bed as the diaper couldn't handle that amount of urine.

For months, every night he has asked to please not wear a diaper. We have tried several nights without one on, but the bed is so soaked in the morning that he even realizes he needs it again. But then about ten days ago when he asked to try a night without a diaper, I allowed him the chance, and he was dry on the first morning! Great, but then it never lasted past one morning....but day two he was dry also. Day three there was urine everywhere, but I thought we might as well let him try for the best two out of three. Day three, dry. Day four, dry, but then he ended up in the hospital for 24 hours and had to put one one because he needed rest and the amount of IV liquids going into his system didn't allow any forgiveness in the bladder department. We came home and ever since last Thursday night, he has been DRY in the morning in just his boxer briefs.

PRAISE THE GOOD LORD!!!!!!!

Garrett is so excited coming into my room (sleeping later also now-past 6:00) every morning to report that "my undies are dry" with this precious, proud grin on his adorable face! I think that he is sleeping much better in the mornings because of not wetting in the diaper.

We have cut the late tube feeding and are shuffling it around to earlier in the day, if needed, and I am sure that helped, but it wasn't a huge enough volume that it should cause his issues he had at night.

I wish I could put into words the pride he has in this new milestone. He is just to proud and so so so relieved to be done with diapers! One night he told me he wanted them out of his room, so I took the plastic, stacking organizer that held chuck pads for the bed, wipes and diapers out, and the next day we took the diapers from the organizer to his class at school, as there are kiddos who still use them there. The next night he said that there were still some in his closet and asks me to take them out. So then I took out all the diapers, even two big cases of them! They are by the front door waiting to be picked up by someone. I kept one case for "just in case," but my heart tells me that he is done.

So while some parents of nine year old boys bask in the glory at their son's first large game kill, first Salmon catch, first hike up Mt. So-and So, a report card with fabulous marks, or a hit over the fence, I know that relative to my boy, this is massive, ground-shaking, earth-shattering news in his special life. I cannot put into words how thrilled I am for his ego and pride and maturity, that he conquered a challenge that appeared to be so huge and out of his control!!!!!!

To celebrate, we bought a bike that we fitted with training wheels as he has been asking, just this week, to be able to start learning to ride a big boy bike. His Daddy-O presented the bike to him tonight as a token of how proud we are that he decided to kick out the diapers and SUCCEEDED!!!! On a heartbreaking note, however, at bedtime he looked at me and very seriously said, "Mom, if I have a wet bed one morning, will Daddy take my bike away?" I almost melted into a large lake of tears!!!! I assured him that the bike is truly his and that unless he did something bad with the bike where we took it for a day or two for him to re-think his decisions, he would never lose the bike!

Garrett's smile just after Oscar game him his surprise bike!

The kid melts me. He truly does. Each day gets sweeter, and I adore his beautiful soul more every moment!

Godspeed,
CL