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

Hospital Advocacy (or How To Help Others Survive a Momma Bear Attack)

If there's one thing I have learned in this lifetime, it is that I am the best advocate my child can have. Sure, others care...doctors, nurses, teachers, aides, community support workers, friends and relatives, but God gave ME what my child needs in the advocacy tools department.

I was raised in a family with multiple relatives in the health care professions from physicians to nurses. I was taught very young that a doctor's word was the LAW. Period. What he says goes, and I am merely the patient or the student. For years I took this to be true. My grandfather was a well-respected cardiologist who started the first cardiology practice in Alabama and spent many of his years making house calls even! I would bow at his feet when it came to his wisdom, opinions, or comments on all things medical. He took me to make rounds and even to the OR to watch his best friend, who he hired from the Mayo Clinic, perform several open heart surgeries.

But having a child with special needs has changed that. If there's one thing I would like to share most with parents dealing with anything from a medically fragile child to a kiddo getting braces or visiting the ER with a sports injury, it is this:
You know your child and his or her needs and moods and normals more than anyone else!
That being said, you have a huge amount of both weight and responsibility on your shoulders. Sure, you may not be a physician or research scientist or therapist, so we must listen and learn and do our own research (but not "think" we are always right or expert in the medical department) so that we better understand and can make decisions.

But there's one area that pops up on blogs and message boards, and such, that really makes me feel uneasy. That topic is the one of students, residents and young physicians in the hospitals.

Disclaimer: I am well aware that becoming a physician takes much, much more that classroom time. I am well aware that on-the-job training takes someone from the brain power of medical knowledge to the ability to assess and diagnose, treat, and hopefully send a patient away healed. If you have spent any time around hospitals, you know all too well the scene of a person in a lab coat being flanked by at least five other people who look like they are not yet old enough to drive, lab coats floating along beside and behind like gliding seagulls' wings, descending upon your loved one's hospital room. Sometimes it is a welcome sight. Garrett LOVED having the residents and medical students come by because his assessment was that all of these folks came to P-L-A-Y!! And this was partially correct, as far as he knew. And this was fine with me...
during the day...
but not...
EARLY IN THE MORNING WHILE HE WAS SLEEPING!

During this last hospital stay, I found myself feeling the momma bear sort of bravery coming on the morning after he spent the night inpatient. His nurses had worked so hard to let Garrett sleep, not making a peep and not even making him stir while they pricked his finger to check his blood sugar every two hours throughout the night. But then as the sun came up and I realized he was going to continue sleeping past his usual early wake-ups, the students and residents glided in.

I do NOT mean to be disrespectful of any of you in the medical profession, and I LOVE young people, especially ones who chose to spend their lives getting very little sleep, investing a small fortune, sacrificing a normal college life and working your tail off while helping kids like mine! I realize that you may not have slept all night, have this as your first rotation in your (very exciting) third year, have a week until you will have M. D. after your name, or are really interested in my son's case. But when you enter my child's room, you have entered our home away from home, our personal space, probably me in my pajamas that early, and most importantly, the little room which holds all the tools for my son's rest and recovery.

So last Thursday when the gulls glided into Garrett's room for their rounds (after the attending M.D. had already rounded on Garrett QUIETLY) I smiled and welcomed them as usual. But this was different. They surrounded his bed, 5 or 6 of them total, introduced themselves, asked the same questions we had answered the previous night in the ER and on the Peds floor after admission. But it then escalated into a male resident growing above the polite, peaceful whisper and moving to a low voice, almost as if he was hoping to ease Garrett out of slumber so they could assess him. I made a couple of sheepish, shy comments about how "Hey, sleep is why we're here! Need rest! Glad he's still sleeping as this isn't our usual in the mornings..." and so on, but they didn't take the bait! I attempted to step towards the door and began to tell them we could talk out in the HALLWAY where there aren't sleeping children, but by then it was too late. I wanted to kick myself as Garrett began to wake slowly to these people around his bed staring at him. He perked up and flirted with the two girls and talked to them, and I began to steam inside.

That's it, I have decided. We have spent enough time inpatient and at teaching hospitals being an "interesting" or "unusual" case, and I am pretty much over being okay with anyone in our room at anytime they like, on their noise and physical assessment terms. I read on a blog that one mom even posts a sign on her child's hospital room door requesting everyone to knock and then wait to have the mom or dad meet them at the door. I think this isn't too much to ask except during nurses' assessments overnight, and most nurses are so silent I don't even always know they have come in!! God bless them!

So if you happen to read this and are new to being a mom of a kiddo who is special needs or just is a klutz or daredevil and ends up spending loads of time in hospitals, please know that YOU are in charge even when your child is inpatient or in the ER. No one else can advocate for your child like you. And when the time comes, it is not rude or disrespectful in any way to require that medical staff adhere to reasonable boundaries that are best for your child or loved one. I am aware this can pertain to having a spouse, friend or parent in the hospital as well.

Students and residents: Just remember that while the no-sleep insane shift you are on may be the worst you can imagine as far as exhaustion, you have no idea until you have lived in a hospital for weeks or months or years on end, are caregiver for a child or adult who has 24 hour needs at home, or a mom or dad of an autistic kiddo who knows no such thing as night versus day, what exhaustion and desperation are like. Please adjust your radar to include an assessment of each parent, patient and room you enter, picking up on cues for quiet, anxiety or fear. And then use those cues to customize your attitude and approach. If you are aware and respectful, I will open my book on my child and his condition and even praise you and encourage you in your career. But if you don't, you will not get anything from me but a stare and a point, and hopefully you have enough social skills yourself to know that means to get out. I will then meet you in the hall where we can talk aloud.

Again, I appreciate those in the medical field, but there are many, many pieces to the puzzle of a kiddo getting well, and one of those includes sleep!

Godspeed to you on this journey, parents, and you remain in my prayers always!
CL

Before and After G-Tube: Disturbing and Encouraging

One Year Can Change Everything

When Garrett was one, he had a g-button place when he had his first muscle biopsy. He had withered from a 98th percentile newborn and one month old to a 16 month old beneath every curve of the growth chart. A year later, he had learned through therapy and time how to eat and drink besides nursing, and so the button was removed. Here is a photo about a week after his first button was removed. 

Last year, we found ourselves back in a place where Garrett wasn't thriving. He hadn't grown in a year and a half. If you know much about Mito or don't but can just use some common sense, take a moment to think about how much better a person's body handles stress when it is fit and healthy versus when it is not nourished well. That's the place Garrett landed: not fit, failing to thrive at age eight, once again. Every doctor who saw Garrett would enter the exam room to a cute boy without a shirt on because it was obvious to me he didn't look good. But no one wanted to take the next step. Finally, in Seattle last November, the Mito specialist noted he hadn't grown in over a year and asked what I thought should be done. We had been through nutritionists, GI and all that, but nothing was helping Garrett enough. I said I thought it was time for a feeding tube, and with a confident "Let's do it!" I had the agreement of the doctor I respect the most when it comes to Mitochondrial Disease. We headed home, met again with GI who sent us to a brilliant surgeon, Dr. Curnow, and off we went! Prior to this, Garrett had an appendicostomy in September of the same year, so we knew they surgeon well. The surgeon initially wanted to do a g-tube with the appendicostomy surgery, but the GI specialist wanted to wait and see if Garrett being able to empty his bowels daily would help him feel more like more food intake by mouth. It didn't help much at all that we could see from September to December. So a week before Christmas, the g-tube was placed, and then about 10 weeks later, it was replaced with a Mini One button. He started on an additional 1250 calories in addition to his oral intake of foods, and now we are down to 750 additional calories per day unless it is a strenuous day or he isn't eating well, in which case we can up to 1000 or even 1250 if we feel it necessary. He started off on the pump, but he handled bolus feeding so well that we just pour formula in each time he takes his meds. He uses a food-based formula, Pediatric Compleat.

Below is a before and after that I share to show the difference a year can make. The photo on the left is August 2013 when I checked on him at midnight and found him curled up beneath the covers and lying in a bed that was soiled from the stool he had leaked all day after being constipated for 6 days. On the right is Garrett August 2014 after 7.5 months with the g-button and almost a year with the appendicostomy. I photoshopped some soiled bedding out of the left photo, and since it took me a while to get that done, I didn't share this before I shared another before and after collage. This one takes the cake. This one shows how horrible he looked. Earlier that day he looked this tiny but pregnant as his tummy was so distended from holding 6 days of stool as his colon was not moving. 

Many people have asked why he has the tube. That's simple: He cannot take in enough calories orally to sustain growth and development.

Some have asked excitedly when he will be able to "get rid" of it. The answer is probably never. It will likely be a part of his "normal" for his lifetime. This little apparatus has saved his life twice. It gives us access for meds if needed, additional hydration, and life-giving calories. Odds are he will need it in an increasing fashion as time goes on, but for now we rejoice in the help that it is as we are able to wean him down a tad! Miraculous!

Some ask why he needs it if he looks so great! I get it, but just check out the before and after, and you can easily SEE the answer to that one!

August 2013/ August 2014

As always and above all, I praise God for not only Garrett's health, but for the life of every person who struggles with Mito, each person who prays for Garrett and those who may not even know that in their disbelief of God, their thoughts and well-wishes for Garrett are heard by our Creator!!!

More blogs to come on more great things happening out here in Idaho, especially for our son! For now I will rest my head in eternal gratefulness for the miracle that is each and every child!!!

Godspeed,
Clara-Leigh

In Disbelief I Get To Write This!

I am in absolute awe and disbelief that I get the opportunity to even think about writing this post, let alone actually sit here processing the words through the keys to share with you!

Nine years ago we had no idea what a special kiddo our son would be. While I was expecting Garrett, it was placed on my heart that something would be different about him, but I couldn't pinpoint what it could be. I just knew he would be special needs of some form.

Five years ago, I had no idea if he would ever talk, carry on a conversation, follow instructions, use the toilet, or even have much in the way of happy relationship with anyone years down the road.

Four years ago, we were informed that he had Mitochondrial Disease and was mentally retarded. We were told that he could make it to his 20's, but by then it would be really bad as he will take a downhill turn sometime before then.

And not here we are at age nine with so many glorious miracles surrounding our child!

So how's Garrett?

GARRETT IS AMAZING!
I will list some of the things going on that have us so excited and busy!

1. Garrett is reading. And I don't mean reading three letter words, but READING! He is sounding out two syllable words and reading signs and books we never imagined he would read! He even fussed at me for passing a restaurant sign too quickly before he could read it saying, "MOM, you need to stop in the middle of the road so I can finish reading that. I want to go eat there one day, so I need to read the name!"

2. Garrett has gone for a week wearing NO diaper at night! He is in big boy undies all night and staying DRY!!!!! THIS IS MAJOR NEWS!!!! We anticipate some mornings with wetness, but we just keep layers of chucks and fitted sheets so those mornings aren't dramatic. We couldn't be happier about this! His self esteem is through the ROOF!

3. Garrett brightens people's days. He just says "hi" or "I want to marry you" or "I love you," and he can make even the toughest exterior warm!!!

4. Garrett is in "big kid church" now on Sundays at Deer Flat. We wavered on the right time to send him from the preschool area to an area with more noise, more movement and less adult-student ratio, but he is loving it, and we are so excited for him and thankful for a church family that loves him for who he is and sees the amazing inside him! God is right there out front of that kid!

5. Garrett is asking to get a bike! He has had all sorts of tricycles, but this week he began to ask for a bike with training wheels. He is so thrilled about it, and I can't wait to take him shopping!

6. Garrett is riding the gas-powered 4-wheeler by himself all over our place! Now it's past irrigation season, he can go all across our alfalfa field by the house, and with it being irrigated by gravity, the ground is corrugated, and he thinks it is fabulous to go bumpity-bump across the field, down the hill, and then fast up the driveway. YES, he wears a helmet!!

7. Perhaps most wonderfully: Garrett's behavior and maturity have given us the chance to do more as a family WITH Garrett instead of the two-family situation we have been living for years. Just today, he went to the Boise mall with the girls, another family and me, and we even ate dinner out! To say this is amazing and wonderful is such an understatement! Last night he lasted an entire BSU football game, and since it was televised, it took longer than any game he has attended. To know we can be a family and have ALL of us involved is so fulfilling.

8. Garrett is GROWING! The  man-cub is looking like a boy now! He has some bone structure to his legs, a little chub on his belly, and has really grown taller. He is so handsome, and to see some volume in those beautiful cheeks when he smiles is indication of the strides he has made!

So what's next?
Well, he will continue to get 750-1000 calories of Pediatric Compleat enteral formula through his button directly into his stomach for the foreseeable future as this seems to be the magic that has him growing. He still enjoys eating by mouth, but we have stopped stressing him by chasing him around with table food. We will go with the flow and let his body show us what it needs and doesn't need.

Research shows that eight months after and appendicostomy or cecostomy (he had the appendicostomy), the colon has had time to heal if it is going to heal from being sick. We did some adjusting of the flushes at the eight month mark and a couple other times, but it appears his colon needs the daily flush, so that looks to be how he will manage his bowels throughout his lifetime. While it would be wonderful if his colon had "healed," it apparently is what it is, but we are so thankful the appendicostomy works so well for him!

We see Dr. Saneto, the Mito specialist in Seattle, in December to show him our improving boy who seems, for now, to be giving Mito the finger!! I know he and his nurse Pam are going to be blown away by Garrett's mental and physical strides. Of course, I always ask the same questions, mostly about prognosis "this time with what we know today" and Mito cocktail doses and EPI-743 drug release in future. Garrett and I fly to Seattle December 21 or 22 and spend one night, go to the appointment, and fly home the next day. We love these trips, and this time we will take in some beautiful Christmas lights!

And this week was the first "scare" we have had with Garrett:
Wednesday Garrett's aide and caregiver text me a couple times telling me that Garrett wasn't looking or feeling right and was asking to go home. It was a crazy day at home for me as we had someone doing some work on a pellet stove install, were sealing the house to keep mice out, and the girls and I were rearranging furniture and deep cleaning. I told the aide to let him know he would nap at home as soon as we got home if I picked him up. His aide said she would watch his temp and check with me in an hour. We knew a couple kiddos from his class were out sick, and we knew there was a stomach and headache bug going around. She text me later and told me to please come get him as he was complaining of a bad headache and crawling on the floor, wanting to crawl into someone's nap- NOT MY KID!!! I picked him up, and when we got home, he wouldn't ever get out of the car. Once out, he could barely walk and kept grabbing his forehead and yelling that his head hurt. I got him to my bed but then realized I needed to get him to go pee before a nap, and when I finally got him to get up, he crumpled into the floor in a ball screaming about his head and just rolling around. SO not my kid! When I got him up and to the potty, he threw up with no warning. I then called his pediatrician, and a nurse returned my call and told me to take him to the ER at Children's in Boise since his electrolytes could be getting out of balance, and he could be going into a crisis. When we stopped on the way to drop Ainslee off a friend's, he opened the car door and threw up again. Let me say he is the best "barfer" of the kiddos as he is a neat one!!! We let Ainslee out and headed on to Boise. We were taken back and he was assessed quickly after they took our Mito protocol letter.  The ER doc was AMAZING by asking a million questions, following our Mito protocol letter to the tee and calling Dr. Saneto to come up with a good plan. I could not have been happier with that EVER!!! God willing, we will always get at least half that good treatment in an ER in the future, and I would still be happy! Because of the headache, the doc ordered a CT scan of his head before starting IV of D10. Head was  clear, all labs were coming back in close to normal, and his IV was started and he headed to a room. We were there for roughly 24 hours, and Garrett left the hospital looking almost normal! I truly believe that the doctor's open mind, calls to our main doc, quick adherence to protocol including the right fluids and meds and compassion made our boy get through what could have been "a big one." Call me nuts, but in my mind, I always have this small place that is held up knowing that these things will be more common as Garrett ages, and they will likely get worse, taking longer to recover and pinpoint the problem. This time is was probably a virus he wasn't handling well. Thank Goodness it was nothing more and that Garrett bounced back so quickly. I guess we can say we have one under our belt and can be thrilled the protocol worked as planned.

That's long overdue, but since we are having such a great time staying busy with the kiddos and including Garrett in so much more, I just don't take the time to blog as much! Some other great things have happened lately, but I just cannot share all tonight. Plus, I want to add PHOTOS, and my eyes are crossing. So here's  one photo to brighten your day!!!!

Godspeed,
CL