Saturday, December 22, 2012

How To Hug

Tonight, after I put Garrett to bed, I was walking down the hall, away from his room and he said, "Mommy, wait, I need a hug." I returned to his room, sat on his bed, and he leaned into me, arms limply by his side.

I then realized that he doesn't know how to hug.
He has been hugged a zillion times in his seven years of life.
But he doesn't hug back. He just leans into us.

So I decided then and there that I needed him to know how to hug correctly. And yes, it is selfish. I NEED a hug from the kiddo. So I stayed there a minute and talked about how to wrap arms around me and SQUEEZE. Squeeeeeze, Garrett!!! He did it. Awkward, unnatural, but he did it.

It was just a bit of a reality check of his mental state that he had to learn something we take for granted.
That's all. It's a huge deal, this whole journey is. But tonight we took one more small step towards trying to help him fit in.

Just like I have to wrap my arms around Christ and squeeze.........we all have to learn to hug.


Godspeed,
CL

Tuesday, December 18, 2012

Emotional Shopping



Today Garrett had two appointments in Boise, an hour drive from the homefront. Now for those of us living on the edge of the middle-of-nowhere (which is, in our opinion, the very best place to raise our kiddos and keep our sanity), a "trip to town" means we empty the wagon out, clean her up good, and plan to spend the day "in town" getting all the supplies needed so we don't have to make the trek again soon. We come home all tired-out, wagon pilled to the top with supplies, Christmas gifts, etc.

Both appointments went well. At physical therapy, also called voiding dysfunction therapy, Garrett was so funny! He was spooled-up really high and chattering non-stop. Mr. Kevin got him to work on some of his video games Garrett controls using his bum and pelvic floor muscles. We then decided that the big day of truth will be new year's eve. Since Garrett almost always has a bowel movement at night, Kevin figures bringing him in as late as he can be at work would be our best shot. We want to get the electrode sticker things onto his bum and get him on the potty AND get him to poop. We believe he has the ability now, but needs a success to get him really understanding. So new year's eve at 6  in the evening, we will be partying.....and hopefully pooping in Boise. Wild time, I tell ya!!

Next, we took Garrett to the pediatric orthopaedic specialist. Garrett's physical therapist and I thought there was a pretty decent sized leg length difference on my boy, but he couldn't see it . It was weird. So that's that!

RaeAnn and Sammy the service dog went with Garrett and me. We enjoyed a fabulous dinner at the Boise Co-op. Then Garrett asked to go to Toys R Us to show RaeAnn the store and wanted  to play with the train display and the wind-up little toy display. We browsed the Legos, Toy Story items and also the Playmobil. I found one last little Christmas gift for Garrett, a tiny R2D2 character with a button that makes lights and noises happen. He saw it and seemed to like it but has no idea I bought it. I am happy we found it!

But there was something else tonight. It has happened before; I have felt it before, but never been able to put it into words. I will try tonight, for the first time. Bear with me:
Tonight we were in toy heaven. Toys everywhere, but my son doesn't really pick one usually. He looks at them, then finds the train table and plays, then flits off to the wind-up toy demo area for a moment, then if he finds the monster trucks and toys that have cars with buttons and lights and noises, he hangs there for about five minutes. And then he is pretty much done. We can make the rounds again, but it doesn't change much the next time. I stared at the Toy Story toys the longest tonight. I know some of our family members have purchased some of the characters for Garrett, and I know he will be happy when he opens them. But there was something more I felt besides a little knowing that he liked a certain thing this year. It was an emptyness. I believe I have been shopping for everything from clothes to diapers to doctors to toys for years now, thinking that anything I select or purchase will somehow be "the thing" that will somehow change something. But it isn't, hasn't been and won't be true, ever.  For my two girls, I can talk to them about what they want, and then totally surprise them and knock the ball out of the park since we can communicate, I can fake off any probing questions, and then I can give them a surprise. Selfish, but fun! But even if I purchased every single toy Garrett saw, it wouldn't work that way. I can never be assured I will pick out something he will like the moment he opens it. Maybe that isn't completely true. I can select gifts that he will like when he opens, but I cannot know that it will be something he will stick to or want to play with more than a few minutes.

With this shopping experience and aforementioned emotions came a wave of anxiety tonight, a feeling of complete frenzy, confusion, and disappointment. I could get him nothing or I could get him everything. I could stop therapy; I could stop meds. I could stop trying so hard.....and it seems nothing will change. Tomorrow will once again be Groundhog Day in our world with Garrett. The two appointments were dis-appointments. Nothing to discuss to help anything. Nothing we can do today change anything to make life easier or more understandable or predictable. Sort of like the shopping for the toys. We are there shopping, but it doesn't change things if we buy something. I am impatient.

Maybe the toy store is a metaphor I just need to tuck away. The girls are outgrowing many toys now. They are more into music, books, movies, things like that. And my boy......my little guy doesn't even understand how to throw a "WHY WON'T YOU BUY ME THAT" fit. And while when my girls did that, I wanted to get mad at them, I would almost pay to have Garrett act like a normal little kiddo and freak out over wanting everything in the store. At least then I could put the whole store on a credit card and walk out knowing I did something he would love.

Just my ponderings for the night!!

Godspeed,
CL

Monday, December 17, 2012

Happy 12th, Addie!

HAPPY BIRTHDAY ADDIE!!!!

The weekend was so crazy that I don't think that I let the date of today sink in very well. My first born child is twelve, today!!! Addie is such a blessing to me. She made me a mom, but it goes way beyond that!!! 

Last night at her dance recital, I just took it all in, watched my little girl bloom and enjoy the passion of her very soul....dance. Addie just started dancing a year and a half ago! She took a few weeks of classes when she was a toddler, but then she didn't love it, so I saw no sense in it at the time. But then it hit her! She took her first class, a jazz class, last year, and she came out of the very first class saying, "Mom, I have found my favorite thing in the world!" 

I cannot express how happy I am to have a child with a passion. I believe a child without a passion in something is a life so open to society's temptations, evils, and the world's call to vanity, negativity, and eventually the pull into a big ruts in life's roads. I know that we cannot force our kiddos to have a passion. But we can give them opportunities to explore things they think they may like. God blessed me by having Addie tell me what she wanted to try and then allowing her to root that passion in hard work and dedication where it has grown tremendously. 






I often hear people say of their parents, "If I can be half the person my mom/dad is.....," and I say this about both of my parents almost daily, but Addie makes me say that about HER!!! I pray I can be half the Christian lady that my daughter has become.

Just this past week while I was off at appointments with Garrett, Grouchy called me to tell me he didn't see Addie in the house, so he went to look in her room. He had assumed she was playing on her Kindle Fire or something like that but nope. "Addie, what are you doing?" Grouchy asked.
Addie's reply was, "Studying the Bible."
Wow. Just wow.

I look forward to watching this butterfly soar wherever she wants to soar. We will enjoy watching God's plans unfold in her life. I am honored to be in her life!!!

Godspeed,
CL

Thursday, December 13, 2012

PT Wants Orthopaedics Referral AND Audiology Not Great News

This morning I pointed out to one of Garrett's physical therapists, the one who does his poop therapy working on his pelvic floor muscles, that Garrett's upper legs appear to be different lengths and that Garrett is limping for a while in the mornings. I have also noticed his hips and shoulders do not seem to be even. Kevin, the PT, measured Garrett and lined him up to look at him naked, and said it appears to him that Garrett's femur bones are different lengths, so he probably wakes relaxed and very uneven, then compensates as the day progresses, causing his pelvis to shift and a shoulder to drop.....all not good things and can cause pain and long term damage. When I asked him how to correct it, he started talking about putting a staple into the growth plate of the longer femur and letting the shorter one surpass it, then removing the staple.....I got a little overwhelmed at that point! So we are getting a referral to an orthopaedic clinic for x-rays.

Then after a few errands, we got to see the audiologist. She put Garrett into the sound booth and tested his hearing for a long time. She didn't need to test to see if the cilia in his ears works now as that is done, and we know they don't work at all. She said that the auditory neuropathy stuff could be helped with the FM listening device and is working on ordering one for us. We are praying insurance will agree it is worth it....$2000. Meanwhile, Garrett's teacher's son, Bayler, has one we are borrowing to see how it works for Garrett....sweeeeet!! Thanks, Janel!! Then the audiologist showed me the hearing screening results that show his right ear is below normal for high frequency and borderline for the upper-middle frequencies. Hhhmmm. So she pulled up the same sheet from a year ago, and this has changed a good deal in the wrong direction. Bummer. While she isn't ready to slap a hearing aide into his right ear, she does want to re-test in six months to see if the trend is continuing or not. Meanwhile, we will see her again when the FM hearing device arrives. The whole sound booth testing thing seems to affect me in a weird way. My baby is closed into this booth playing a game that requires him to "listen carefully" and do things when he hears the "birdies chirp," and I am outside hearing his tiny, gruff little voice asking questions and telling me hello, and just seeing him try so darn hard to listen oh so carefully for something that isn't there sometimes. Just made me a bit emotional....hard to explain. Some of it is the very quiet sitting there for so long watching the test and realizing things are changing since the test took twice as long as it took last year. It hit me that things are shifting, not just mentally, but with hearing, bones, a liver enzyme off, a miracle drug we may never get the chance to try. It became so, so real for a few moments today. Maybe Mom was right this summer when she lovingly accused me of being in denial!!!

I did get some of the kiddos's last Christmas things picked-up, including electronic drums for Garrett...he will be so excited!!!!

Oh, and we were at McDonalds today in the drive-thru and he rolls down his backseat window and says to the smiling, cute blonde employee in the window, "Hey, I need a beautiful girl like you to kiss me on the cheek!!" Leave it to Garrett to send me off laughing!!!

Then tonight he was asking me to spell my name, then he came downstairs to show me a card he made me with MY NAME WRITTEN on it!!! And that's a LOT of writing!! I cried!!!

Godspeed,
CL

Seattle Doc Visit and First Flight With Service Dog

Sunday evening, Garrett, Sammy the Autism Dog and I flew to Seattle, Washington, and met my mom there. Mom flew up from Alabama to go to the appointment with the Mito doctor and then fly back to Idaho with us to enjoy a week of visiting and then a wild weekend of dance recital and Christmas program!

Monday's appointment with Dr. Saneto, Mitochondrial Disease specialist at Seattle Children's went fine. It was our second appointment with him. He chatted with us about EPI-743, the "miracle drug" for Mito and let us know it is entering a very critical new trial which, if it goes well, could mean an FDA approved drug available to Garrett in a bit over a year at best, but at worst, if the trial for Leigh's Disease, a very rapidly progressing form of Mito, doesn't go really well, the drug could be scrapped.....gggrrrrr. Mito differs from type to type just as it can from kiddo to kiddo with the same type, so the drug cannot be expected to offer the same exact results for each type. We wait.......

My mom asked some very good questions such as, "During our Make-A-Wish trip to Disney world, a relative was saying that people would have to not believe anything was wrong with Garrett by the way he looks and wonder why he was on the trip. How can you explain this so I can understand how he can look so great but have this stuff going on in his body making it deplete?" Dr. Saneto explained that Garrett is ticking, but that they are learning things about mitochondria like how the mitochondria can bump into one another and almost fuse together, for lack of a better term, and if one is function at higher precentage than other, they average out. So this can cause percentage of mito function to increase or decrease almost moment to moment. SO this can hurt or help. Depends on who is bumping into whom. So while he is ticking, it is hard to tell at what rate he is ticking. He said the Mito drug may help both on a cellular level with individual mitochondria or even possible with the mitochondrial DNA that is depleting in Garrett's form of Mito. We won't know unless he gets to take the drug......if it makes it through trials and gets approval. Prayers!!

Dr. Saneto also asked about any other labs or tests we have had done. The disc with the 24 hour EEG results couldn't be opened with his computer yet, so he will get that worked out and review it. He also didn't have the blood work he asked to have done two weeks ago in Boise. Of course, he has it now, and got it an hour after our appointment was over. Only abnormal was Garrett's live enzyme AST was elevated. Nurse will get back to us on that. LOVE, LOVE, LOVE his nurse, Pam!!! She is one sharp lady!!!! On top of things!! Then Dr. Saneto went on to ask about other appointments we have had. I let him know that Garrett's cillia in his ears, the little hairs, are not working at all. They were completely unresponsive in testing by that audiologist. Then Dr. S mentioned Auditory Neuropathy and asked that we return back to the audiologist very soon for discussion about getting Garrett an FM hearing device. it is like a microphone for a caregiver, teacher or television, to have nearby, and Garrett would wear little ear buds or aides or headphones to hear the transmission of the sound he needs to focus on. It was eye-opening as Dr. S painted the image of Garrett's complete inability to prioritize sound, thus possibly this explains his frustration to lots of noise chaos or any noise he does not control. Back to that later....
Overall, the appointment was good. We will go back in six months. I pray that then we will learn EPI-742 is soaring through FDA approval!!!

After the appointment, we picked up prescription refills and headed down to Krispy Kreme and then to the children's museum where we played the day away! We spent a second night in Seattle, and rested more than the first night that Garrett grinded his teeth all night!! Tuesday, we slept in a little, a very little, but rested well and headed out for lunch and to the airport. See previous post about Chinese dining experience with Garrett!!! Our one hour, ten minute flight to Boise was easy, and then we had a quick one hour drive out to the edge of the middle of nowhere to our home!

Sammy, sweet service dog Sammy. I want to cry just trying to describe her!!!! She went along in her new leash and her service dog vest. Alaska Airlines was very kind about her traveling with us, and Sammy's first flight caused her only one trembling moment when the apparent former naval aviator landed and slammed the turbo-prop's brakes on hard and sent her sliding under the seat in front of us!!! She slept most of the flight below our feet. She was precious and perfect!!! She slept with me in the hotel and Garrett slept with my mom. Sammy is a warm, still girl at night!! She liked hotel life and did perfectly wonderfully pottying at just the right times and places!! Yes, this includes the Seattle airport's pet pottying area outside the councourse where the smokers hang out and Garrett relieves himself too.....oops! I found that having Sammy with us alerted people that there was something special about Garrett besides the fact he told EVERY lady he saw, "You're pretty!" No one gave us ugly stares or made comments about Garrett's awkward and usually loud behavior or ticks or meltdowns. Sammy gave him a hall pass!!! It was truly wonderful!!!

Mom is here until Monday, and we are loving that!!! Next post will be about today's physical therapy and audiology appointments. Lots going down around here.....

Godspeed,
CL

Tuesday, December 11, 2012

Having Garrett = Saving Money and Freebies!

I will post later about Garrett's visit with Dr. Saneto at Seattle Children's Hospital yesterday, but tonight I am wanting to get some good sleep but share a really funny thing that happened today.

We arrived at the Seattle airport very early for our return flight. Mom, Garrett and I scouted the lunch options. She found a place with Halibut and chips and Garrett and I opted for a Japanese place with Chinese food. That in itself cracked me up, but it got better. The young Asian lady who was serving up the food Chinese Subway style offered us a sample, so I asked for the orange chicken. Any fried chicken is yummy, but then roll it in a sweet glaze and BAM, I am there. Garrett even liked his little sample, so we ordered a single serving of white rice with orange chicken and drinks. Total was six dollars and some change. It was plenty for us to share. When a young Asian man was getting our total and bagging the food, Garrett said, "Mister, you handsome!" To which the young Asian man replies, "That very nice. I give you ten percent off!" And then he gave me a new, lower total!! Garrett didn't understand, but I was thanking the man as Garrett then aims his charm weapon at the young Asian lady and says, "Hey lady, you pwiddy (pretty)!" To which she replies, "You so cute and nice, I give you free egg roll!!!" And she hands us free food!!

There ya have it! If you need any deep shopping discounts this holiday season, you can borrow Garrett!!! Just please return him tired, fed, and clean!!!

Merry Christmas!!!
Clara-Leigh

And I will try hard to stay up late enough to try to share later about the Mito appointment we had yesterday!!!

Saturday, December 8, 2012

24 Hour EEG Results

NORMAL.
Normal.
normal.

You would think I would be jumping for joy that the 24 hours Garrett was inpatient plugged up to wires and being filmed there was no sign of seizure activity.....but I am not. I was thinking there had to be some reason, some tangible, concrete, quantitative reason. But apparently seizures don't look like the answer. Dr. S in Seattle, Garrett's Mito doctor, will review the data himself by the time we see him Monday, and unless he can see some subtle things that the doctors in Boise didn't, that will be off the table for now.

Garrett's days are all over the place. A few days this week, he was super-compliant, and a joy minus the  ticks and several tantrums and screams throughout the day. But then today, he was off the chart BAD. And I don't mean he was trying to be "bad" in the normal kiddo sense of the word. He was upset about every single thing. We went to our little town's Christmas parade, and he was screaming because people were giving him TOO MUCH CANDY....WHAT!?!?!? But that's how differently he sees things. Things are garbled, backwards, and painfully opposite what most kiddos would think like, act like, or react to.

RaeAnn, his developmental therapist, worked with him about six hours today. In fact, she went with us to the parade to help him deal with it all. RaeAnn is such a Christ-filled spirit and such a dear lady. She truly loves Garrett. We brought him home screaming about everything, and by the time we pulled into the garage, I was in tears and apologizing to RaeAnn for everything.......as if I haven't used every fiber of my Earthly being trying to fix things. She looked at me and with tears in her eyes said, "Clara-Leigh, I can't count the days I have driven home crying because it makes so little sense, and I cannot seem to even help a lot of the time." Of course, then I burst into tears. It is just so complicated.

When we got into the house, we tried to just function as a normal family for a while, and it was even easier than usual to have a peaceful evening since Addie was slumbering the say away in the guest house after an all-nighter with the Deer Flat Youth Group and Ainslee was at a Christmas brunch with one of her good friends. But Garrett was off the chart, meds were on board that should have helped, but NOTHING was helping...no rewards, threats, bribes, calmness, or anything. So I made the executive decision to put him in bed for a nap.  I put an electric blanket on his bed and Sammy (his dog) and I curled up in his bed with him under a super-soft blanket and the electric blanket. We all crashed hard for two hours!!

Garrett woke happy, but was still off this evening. Can't explain it. Probably it has to do with not having a routine or school today. But isn't that every single weekend. Or like Grouchy said, it's like being prisoners in our own house. We are trapped. Even with the help from caregivers, it is loud and lots of times, out of control. So much for the guilt I had for years when I felt bad leaving my boy and taking off. Guilt gone!!!!

Tomorrow we travel to Seattle where my mom will meet Garrett, Sammy and me for the Mito doc appointment. We return Tuesday. We hope to find a couple of fun things for Garrett to enjoy in Seattle after his appointment. We are hoping Sammy will do great flying like she has done with everything else she has experienced to date!

Godspeed,
Clara-Leigh

Thursday, November 29, 2012

Garrett's Letter to Santa

We have had to get super-creative with Mr. Garrett when it comes to his developmental therapist and me working on his handwriting, so it has come to letter writing. He loves getting letters suddenly, so we decided to go from "homework" to "writing letter to people" so he can get more mail!!! So tonight his developmental therapist, AND ANGEL, RaeAnn, heard Macy's is doing a Make-A-Wish fundraiser. It works like this: Each letter to Santa that kiddos drop off at Macy's generates a dollar Macy's will give to Make-A-Wish!!!! So the girls wrote theirs, and RaeAnn asked Garrett what he wanted to say in his. He told her, so she wrote it word for word on a piece of lined paper to let him copy. And here is GARRETT's first-ever letter to Santa. I am so excited and so proud. It took some encouraging as he didn't want to do it at first, second.....or 56th, but he did it!!!


My boy amazes me sometimes! Off Garrett and RaeAnn went to Macy's to HAND DELIVER the letter TONIGHT, then go to his favorite indoor playground and McDonalds. It feels so much like Christmas around here!!!

Godspeed,
CL

Two Little GirlsTurning Great Big Sisters

GREAT BIG SISTERS!!!

That's what Addie and Ainslee have become. They are almost 12 and 10, and they have dealt with more insanity, exhaustion, hectic shuffle and noise than most kiddos. They have endured literally hundreds of waiting room waits for therapy, appointments and surgeries for their brother. Yes, they have gone over 2 years without seeing a dentist because we couldn't fit it in. They have had to sneak things into the car, sit together in another row from their brother, thus far from Mom and Dad, and often not been able to speak in the car due to Garrett's terrible car riding issues. They have had more things broken than even most Godzilla-phaze little brothers can even imagine breaking. They have had patience with a mom who is a grumpy bundle of exhaustion at bedtime many, many nights. They have watched Dad deal with onlookers in public who decided to throw insults at us about Garrett's behavior, and due to their dad's immense patience and class, they have yet to see him retaliate with anything but peace, AND they have yet to see hum carted off to jail for punching these grumps in the face!!!! Addie and Ainslee have not had as many people over to play due to the simple fact that the more folks here, the more chaos, noise, and destruction. The girls have been through so much with this little child we had third, but in it, their lives are changed, and it hasn't all been bad!!!

Recently, after we stopped watching t.v. except for planned Christmas shows or movies we buy or rent as a family, and we slowed our pace to focus more on the humans in our home and not the world around us, we noticed things changing. No, Garrett wasn't having a spurt of positive attitude, but the girls were choosing to jump in more to be a part of his world. Ainslee started changing poop diapers, and NO, I would NEVER ask ANYONE to change one of those (Except Aunt Becca, of course!)!!! Addie started letting him do her ballet stretches with her in the living room. Addie started dancing to the music he jumps around to on his CD player. They both rush to comfort him and love on him more when he falls or gets hurt. Ainslee started wanting to sit by him in the car and let him play with whatever she brought along for the ride. And then two days ago, Ainslee was up with him playing, even letting him play Barbies with her, and that's a huge deal for her!! Last night, RaeAnn, Garrett's developmental therapist and Personal Care professional, was here. Garrett wasn't wanting to do his "work" he has to do with her, and Ainslee bribed him with playing. So he did his work and they disappeared upstairs for over a half-hour doing constructive play with babydolls. It was wonderful!! And I actually believe Ainslee was having fun, not just tolerating her loud brother. 

Of course time is flying, bodies are changing, and I am watching my two little girls become young ladies right before my eyes, but the most wonderful thing is seeing them grow into the BIG people God made them to be. I have no doubt that they will use their past experiences with their little brother to change the world around them. Maybe it will be for another family somehow as a caregiver or volunteer, maybe one of them will have a special needs child, or maybe it will simply be that they won't stare when they see someone who is different, but they will walk right over, meet that person, and TALK to them, be a friend, and love people just as they are.

I just had to share how proud I am of my girls!!! God is at work!!!

Godspeed,
CL


Tuesday, November 27, 2012


Make-A-Wish Idaho asked to use the photo of Garrett meeting Mickey from his MAW trip, and of course we said yes!!!! We were invited to join other MAW families to sit on the Idaho State Capitol steps in Boise for the Christmas Tree lighting and the kick-off of the MAW Season of Wishes campaign where Garrett's poster was displayed on the steps and then was moved into the capitol for the remainder of the Christmas season.  








Garrett was SO excited to realize HE was on the poster! He did lots of hamming-up in the photos I took. Ainslee, RaeAnn and I took him, and though it was quite chilly, we had a wonderful evening, including dinner at a fabulous place! Fancy! When the festivities were over at the capitol, we drove towards home and stopped to enjoy walking along Indian Creek in Caldwell, Idaho, to see the magnificent Christmas light display. Garrett fell asleep in our bed tonight on the cozy heated mattress cover to the sound of my daily Bible reading. All-in-all a terrific day minus a few really tough breakdowns, only one really long major one....over a broken candy cane.....

Only two weeks until we travel to Seattle to see the Mito specialist, and I am excited because my mom will be joining Garrett and me...and Sammy (Garrett's Autism service dog, of course!! 

Godspeed and Merry Christmas!
CL

Wednesday, November 21, 2012

Who Was I To Garrett While Here?

I was driving home from the hospital with Garrett after running a few Christmas shopping errands and getting lunch, and I had the most interesting, yet scary thought.

Who will I be to Garrett when we are in Heaven? I know I will be his mom, but I think back about the time we have shared here, the frustrations, lost-tempers, not-knowing how to best deal with his mental challenges, lack of bowel control, relationships and on and on. And I wonder what he will say to me when he sees me there for the first time, in the rest of eternity. Will he run to me and throw his arms around me and be happy to see me? Will he approach me as a dog who has been mistreated by a human and needs to learn to trust again? Will he need to talk it out and be able to tell me how he REALLY felt here on Earth, in words I can understand and relate to? Will he be angry that I was not patient always? Will he be thankful I fought tooth and nail for him? Will he say he wishes I spent more one on one time with him....or less. What will my job approval rating be? Will he want to know me? Will he shy away never to be close to me?

And no, I have not gone off the cliff yet. I was just thinking, and Garrett was quiet, and there was no phone call, and I started thinking.....

I guess I should think about every relationship this same way. But with Garrett it is different. With all of the interference in his little head that disrupts his very own sanity, and much less ours, who will he be? Will he be "healed or normal," or the same as now. I honestly look forward to meeting him in a time and place where we better understand each other. But wait, I have time now to leave nothing on the court, nothing on the table, take it all, take it all in, use the time I have, and love this kid.

In the end, which is actually the beginning, continued for longer than I can ever imagine, I want to have no more regrets. I want Garrett to know he is valued, appreciated, adored, and worth every bead of sweat, drop of tears, and intense emotion I have ever and will ever have. I want him to know he is loved.

Godspeed,
Clara-Leigh

EEG, Check!

Yesterday morning we went to the hospital for Garrett's 24 hour EEG to look for seizure activity. And while we do not have results yet, the neuro who came by looked at one spell he had that I saw, and the EEG activity looked normal.....YAY!! We will get the CD of the test next week in time to take to Seattle to see Dr. S. The testing started officially at 10 a.m., and we were so blessed to have several sweet friends drop by AND Grouchy, Addie and Ainslee. 

Garrett has a girl, a friend, a girlfriend, a friend-girl....her name is Ashley. She is precious, and like Garrett, she is a PIRATE!! In fact, when her mom, my sweet friend, Amber, told Ashley they were going to visit Garrett, she put on her pirate outfit and even had her mom go buy matching pirate hats for Garrett and her!!! Here, they both stop for a millisecond (THIS IS VERY VERY VERY RARE!!!) for a photo. 


This next photo breaks my heart in a wonderful way! Garrett had a tech come in to add more adhesive to two leads, and Garrett HATES this whole process! In fact, to get him hooked up, he had to be body-wrapped in a sheet and held down....not good. Ashley holds Garrett's hand while he is scared to death:


Want to see something really neat? Right outside Garrett's hospital room is this piece of adorable art......what are the odds?


Garrett was getting a little tired and crabby, so he didn't want the girls "CLOSE TO ME," but I had to snap a photo either way. At least the girls were being sweet for the picture. I guess two out of three isn't a loss! These two girls have grown into such patient, loving sisters to a brother that can make you want to scream very frequently. It is interesting to see how they are better coping with Garrett's quirks, short fuse, oddities and noise. I am so proud of them both. This photo speaks volumes to me. Here Garrett has just screamed for them not to get close to him and spaced our on a Star Wars movie, yet the girls keep it together, smile their lovely smiles, and let weird Mom have her way.


And not at all least, finally, here is the toy that helped Garrett make it through.....Floppy Woody....and yes, there is a terrific story behind the name, but I have another post brewing that I want to complete tonight.


Happy Thanksgiving.
Godspeed,
CL

Thursday, November 15, 2012

Doctors and Better Day

Let me start by saying that when God starts my day with this, I know that they day will be good.........

Appaloosa Horses On Treasure Valley 

Father Let Your Light Shine Down


And then we went to pick up Garrett's developmental therapist for a day of appointments and learning and fun!

First stop was to a new neurologist, and he was great! I mean that he listened, was very respectful, insightful, and even talked like he knew quite a bit about mitochondrial disease, though seems like he wasn't so up on Garrett's type. He will be now, I bet! He examined Garrett and noted he has mildly decreased tone, but he was overall happy with his physical little self. Garrett weighed 45 pounds today, and that's super! He is 46 inches tall. He is really starting to get taller very fast. Most of the appointment was the neurologist getting to know Garrett, and then we really focused in on his behavioral issues and the meds he is on. I must add that every time we started talking about Garrett's ticks, the neurologist started doing this tick involving his eyes. At first, I thought the doctor was messing with me, but he WASN'T!!! For THE FIRST TIME EVER, I kept my mouth shut! He says he wants one doc only to deal with these mental meds, but he feels they are safe but the dosages need to be bumped up one at a time to try to help Garrett out. He also said the Risperdol will eventually not work at all, but should be able to be adjusted up some to help with Garrett's ticks and repetitive behaviors. He also said it can cause even males to get breasts and LACTATE.....THAT IS WEIRD!! Not seeing that yet!! Said he would gladly manage the meds, but not until I speak with Garrett's developmental pediatrician on Monday. This new neurologist is they type doctor I prefer as he was thorough, thoughtful, and answered all the little things I thought to ask without rushing us. And he was great with Garrett. I asked to have him be our permanent neuro here in Boise. Looks like he is here one week per month and the rest of the time in Twin Falls. At least seems like he is more available for med help and such than the developmental pediatrician. That's good. He also wrote for Garrett to have an in-hospital, 24 hour EEG that will also be video taped. He wants us pressing a button each time we see an "event," so if it isn't seizures, they can correlate the button-pushing to the data and the video and we can rule it out if possible. Scheduling will call us tomorrow to arrange soon so we have the report and disc before our December Mito appointment in Seattle. Neuro also said Garrett's sleep study was pretty great....that's super!!!

Next was pulmonology. No concerns, and again he reviewed the sleep study from May again as well. We are cleared with him unless we have issues. Cross off one doc!! YAY!!

Garrett was pretty good today! He did have a blood draw we waited over an hour and a half for in the hospital, but he was only loud, not wild. We didn't take his service dog we are training......too much intensity, and I didn't want any distractions for ME today!! We finished the day with lunch at a restaurant with a playground and then to his weekly indoor play-time and developmental therapy time at an indoor play place called Jabbers.

Almost daily, Garrett gets "stuck" on one particular thing, phrase, or topic. Today's was particularly clever:
Garrett: Hey mom? Why do people say "see you later" when you don't see them later?

Godspeed,
CL

Wednesday, November 14, 2012

"Sir" Garrett


Last night RaeAnn, one of Garrett's caregivers/developmental therapist, saw Garrett flitting about the house in his knight cape and sword my mom bought him during his Make-A-Wish trip and asked him if she could knight him. He agreed, and the ceremony went very well.
I present Sir John Garrett Evans!!!

Tuesday, November 13, 2012

What Can WE Do To Make This Better?

Baby steps. From Dave Ramsey to setting goals, we mention "baby steps" all the time. That's back where I find myself today, at the beginning, again.

RaeAnn, Garrett's developmental therapist AND personal care services provider, called today with a good strategy. Since Garrett's behaviors seem to increase one hundred fold when she arrives, she thought about the situation and called with this idea. What if she came to my house today and rode with me to pick Garrett up from school, see his class, and bring Sammy along? She theorized if we did it this way instead of me picking her up after I got Garrett, it might go better. It worked! No, the afternoon wasn't void of him trying to run away from the car into the parking lot, mentioning that he said the "S" or "H" words or saying over and over and over "I touched RaeAnn's boob" and actually trying a few times. And yes, he had to leave the indoor trampoline park early for these exact behaviors, but it was a better day.

Have any of you ever seen an angel? I mean a REAL angel, live, in person??? I have, and it is RaeAnn. This lady is the REAL DEAL!!!!! She has shed tears with me this past weekend trying to crack the code to what's got Garrett out of whack....even to the point, in tears, of APOLOGIZING that if she is the reason for the downward slipping mental stuff, she understands if we don't want her here. OH MY GOSH, that was a difficult moment. She followed that with drying the tears enough to say she didn't EVER WANT TO LEAVE US and would NEVER give up on Garrett. My heart broke for this angel God shares with our family. We love her!!!! She is one of the absolute best things to ever happen to Garrett, and to me.

Today Garrett played on his iTouch lots in the car, watching a movie and playing a train game. It was a different deal than the past two days where the car rides were terror. We got his mental meds filled today, and I am so excited to talk to neurology Thursday about scheduling an EEG and then Monday seeing developmental pediatrics to discuss all sorts of things.

In all of this, I know God will never leave our sides. I know His plans for Garrett are for good. And we are blessed.

Godspeed,
Clara-Leigh

Response On Worsening Mental Issues

Last night I emailed Garrett's Mito doctor's nurse (WHO I LOVE!!!!) and let her know about the increased behaviors and so on. She got right back to me this evening after talking the possible seizures, increased anxiety and horribly increased negative behaviors, ticks, and obsessions, and she said that the doctor thinks given that information, that "unfortunately he is evolving more into autism." SLAM. CRAP. SHIT!!!!!!!! And I mean it. If you have followed this roller-coaster of life with out family and  Garrett, attempts to stay positive and rosy, and even in some cases, complete denial, you will know I have dreaded this exact situation longer than I have been a mom! My WORST fear as a mom and before I had Addie, my oldest child, was to have a child with severe mental disabilities. And I wasn't thinking a child with Down's Syndrome or the likes. I mean the ravaging horror of autism with no rhyme, reason, and no end in sight. DO NOT jump me on this post if you want to defend autistic kiddos and how wonderful they can be, even in the most difficult cases. I KNOW they can be blessings, and Garrett DOES bless me on a daily basis. But this was MY fear. And it looks to be playing out right before my eyes. Guess I shouldn't have prayed for God to give me more patience and bravery, huh?

We see Garrett's Mito specialist in Seattle in the second week of December. This week we see peds neuro and pulmonology. Then next week we see developmental pediatrician. Developmental peds is the doctor who manages Garrett's mental meds: Zoloft, Risperdol and Focalin. I am glad we have all of these appointments coming up fast. I also asked the Mito doc's nurse if we could get a 24 hr or longer EEG to look for seizure activity. She said there wasn't time, but we could get it done here and then bring the disc to them in December. The doctor also told her that getting blood work done would certainly not hurt. It's time for urine protein and blood sugar for sure, and it has been over a year for pyruvate, lactic acid and more. So I wait to hear about what exact things they would like to see.

On the up side, Garrett's dog, Sammy, is doing really well. She is an angel...not a dog, I promise! I promise photos and more info soon, but looks like Garrett may have a autism service dog in training very soon!! He has taken to her! Before Sammy, he never gave any attention to animals save a few horseback rides he took with me....after begging and bribing him for my selfishness! But he LIKES her!!! I have so many things I want to share about Sammy, but again, time isn't available, so let's just leave it at the certainty that I have that Sammy is a very positive "person" in Garrett's life. The gentleman who will be working with Sammy and us on her obedience and service training gave us homework: get a vest for her and take her EVERYWHERE with us. So far, we are pretty much doing that. She has been to the pharmacy, grocery store, indoor playground, restaurant, school three times for quick trips,pet store (several times!!), and today goes to poop therapy, indoor trampoline park, McDonalds, and maybe to TJ Maxx if I get MY way!!! She is a honey-colored three year old yellow lab with enough energy to be fun, but is very considerate, obedient, kind, loving and cuddly!! Best of all, Garrett cares about her.....THIS IS MASSIVE!!!!! Garrett is taking some of his worst moments and letting them become "comfort Sammy moments" when on his own he will go pet her and begin telling her how good she is and how she will be okay. I MELT!!! And yes, we are protecting her and always with him when Sammy is around. We know all too well that Garrett can be rough. I believe Sammy is answer to our prayers as a comfort and friend to Garrett. Yesterday his teacher allowed him to do show and tell about Sammy while we visited the class. He was so proud of her. He is also taking responsibility a little by feeding her in the evenings. She is such a neat dog. The lady who raised her even has her trained to "wait" to begin eating. She WILL NOT take a single bite until Garrett says "OKAY!" And her favorite thing to do even above truck rides and snuggles and occasional fetching is to EAT. I pray she lives a long, happy life with us. I know she has been a big stress-relief for me, just having her around. And I believe she will help Garrett more and more when we are in public.

Godspeed,
CL

Saturday, November 10, 2012

Where Do I Begin? Where Will This End?

Today was a hard day, a very hard day. And while I realize that it wasn't hard related to families with children in their last days or inpatient, or who have lost their young ones to Heaven very early, for me, it was a relatively VERY hard day.

For a couple months, Garrett has struggled more emotionally with more ticks, more "spacing out" episodes that we now think are seizures, increased anxiety, behaviors and outbursts. Today was the worst to date. He is suddenly scared to use the toilet, wash his hands, and take his meds. When I have to leave home or leave a place where he is, besides school or church, he loses it. And I mean frothing at the mouth, trembling, screaming, hanging on me, spitting at his caregiver the other day, even. He no longer can use "yes" and "no" independently. Everything is "yes-no," leading to some sticky situations as I though it was him being sassy, so I allowed his sister to pinch him when he would ask to be pinched and she would ask back and he would say "yes-no" and I advised her to pinch if he said yes or yes-no......didn't work. I learned he wasn't meaning to say both. He now dumps bottles of water upside down for no reason. He cannot answer why. He is once more dumping out his whole bowl of cereal more frequently and gets very upset about it when it "happens," and then he cannot answer as to why he did it. I though these were "behavioral issues" in the sense he needed reprimand, perhaps increased supervision at critical points like eating and drinking, and would be a "quick phase." But I know it is not the case. He is slipping. His mind is changing.

Good news is that we see the wizzard, the developmental pediatrician, in a week. This man is brilliant, yet very overworked/overbooked, maybe because his office is closed Fridays, and I HATE this situation because communication is very sparse until an appointment. Boy does he have a mother bear coming in next Monday morning ready to pounce on and rip into this disease!! I have typed out the med list and my concerns and observations. I have added even since I made the sheets today. Garrett's developmental therapist is accompanying us, and his new dog may come as well (COOL POST COMING ABOUT HIS NEW DOG!!!!) I think his DT has some great info to share as well, and she helps me see I am not crazy, but we both may be soon caring for Garrett!!! I believe it is time to wean him from his 3 mental meds and get a good baseline, then start over with treatment. What I am seeing in Garrett's interaction with Grouchy, his DT and me is classic Obsessive Defiant Disorder, or ODD, but I will punch the doctor who gives me the classic treatment protocol of family therapy and counseling. I mean it!!! This isn't stemming from any of the simpler problems like home life. This is his precious body being totally wrecked by Mito, starting with the brain. I so long to have my "developmental delayed, failure to thrive" baby back when the mental stuff was merely delay and not this terror. No joke, my son's mind is so twisted up in his little head, and he is miserable. No kid would CHOOSE to act out like Garrett is doing to this extent by choice. And yes, I have read the parenting books....tons of them. And yes, I have tried all of the possible strategies.


Most concerning is that Grouchy and I are certain we are seeing seizure activity, and if I think back through Garrett's seven years with us, and research seizures and watch more example videos, I believe now that Garrett has had seizures since very young. They have never been caught on camera that we know....although old videos of him as an infant may hold some clues. I am certain we are seeing them now, but they are not the classic Grand Mal seizures that most people imagine. They are times when he just loses his ability to be in the moment or takes an "absence." Sometimes they are more like jerking of the arms and facial expressions that do not match the mood or situation. So then the questions remains: Is this new, or are we just only now realizing they are happening. I will try to catch them on film.

So after the worst behavioral day to date, I felt bad asking his DT to stay later so I could go with my husband and daughters to hear Lee Strobel, author of The Case For Christ and other books, at our church. I decided to brave it with Garrett and let Oscar just take the girls and enjoy. That way I could leave if I needed to. I never in a million years expected Garrett to be able to sit still in the sanctuary and listen to a speaker. OH MY WORD. He did it!!! Besides the obsessed whispers "Okay, goodnight" over and over and over as he apparently associates goodnight to quiet, he did it!! I enjoyed hearing Mr. Strobel's testimony, and I found it rather telling that my son could reach such behavioral greatness in church, no less!! God has a brilliant sense of humor and grace-giving capacity!! Just when I had almost lost all hope!

As far as the future and that outlook in my sights, I am trying not to go there at all. While some people in our lives love to encourage us to the point of insinuating that Garrett will get better and better, I am no longer in that camp. Yes, he is learning letter sounds and seems like he will someday read, but with the behaviors evolving into larger monsters like his touching his DT on the boobs and now offering to hurt people, I just cannot bank on the odds the future is going to be anything wonderful. I truly pray for my baby to be back. I miss him!!  Mito sucks.

Goodnight and Godspeed.
CL

Wednesday, October 31, 2012

Voiding Dysfunction Therapy Session #3 and Volunteer Help

What I REEEEALLY want to post about is the miracles that took place at Disney, however time does not permit just yet!! I will need hours to prepare for that one!!

However, yesterday was Day 3 of Garrett's 6 week, once per week voiding dysfunction therapy. Yesterday he got onto the exam table and let Mr. Kevin, the physical therapist, put the three stickers on his bum that measure his muscle use. It took a bit, but eventually Garrett relaxed enough that his muscle relaxation made the computer's measurements get low enough that some music would play. At home at in Orlando on our trip, we worked daily on some potty exercises. They are described near the end of this post. But today was focused on how to use his pelvic floor muscles. Garrett got a bit more control of the muscles and had the music playing on and off as he relaxed them some, but then he kept lying there on the table making his belly do the wave while his caregiver RaeAnn and I tried so hard not to giggle. I was holding it together pretty well even with Garrett passing lots of gas and looking at me when he did it, but THEN Mr. Kevin sent me over the edge. The music wasn't playing, but Garrett was talking about "farts." And then it happened. Mr. Kevin says (in his most soothing voice that almost had me dead asleep at once, oh, and he looks just like Jesus in the movies), "Garrett, good job buddy. Know what I want you to do next? I want you to make the music play and fart at the same time!" I LOST IT!!!! Totally unprofessional of me, but I could no longer sit there on these giggles that had errupted. So I put my head down and laughed silently, that convulsive, silent laugh until I was crying HARD!!! It was just too funny!!! And then RaeAnn leans over and says, "Grouchy would be out in the waiting room howling like a coyote right now!" And then I started laughing and crying harder because I could hear him in my mind!!! Mr. Kevin was proud of Garrett for going along with his therapy more today. Garrett is super-anxious about some things, and doctors' offices or exam rooms are some of those things. Kevin said Garrett's pelvic floor is just super-closed and tight, but thinks there is help for that by continuing therapy. It should go three more sessions/weeks, but I will bet we need to extend that some since halfway through we are only now getting into the treatment part. Stay tuned for week four update next week!

Here is Garrett with two of our friends, Seth and Joe (these two guys are such great sports!!!), at Give Kids the World, working on potty exercises:

Begin by sitting a bit forward on the potty with feet on the floor or if you are small, feet on a stool. Lean forward and clasp hands and rest forearms near the knees. Seth and Joe and Garrett are here showing how to take long, deep breaths and then next let them out slowly....S-L-O-W-L-Y..... Do that three times: 


Next you make a big belly a few times:
Then you relax and try to push poop out. Okay, we skipped that step and ended the exercise.....for obvious reasons.....COUCH!!!!

Blessings and happy pooping!
Clara-Leigh

Wednesday, October 24, 2012

Day Two Make-A-Wish: Photos of the Day


He met Mickey...... no words needed.



And they lived happily ever after....


Make-a-Wish Day One Photos

Not much time to share since we are headed out for Day Two! Yesterday we enjoyed the Magic Kingdom at Disney World. Enjoyed is a weak word compared to what happened there!! I have some absolutely amazing stories to share about the kindness of strangers and God's protection and love through only two days of this so far, but we have lots of fun to get to now, so it will have to wait!!!



Sunday, October 21, 2012

Today Is the Day!

Headed to the hotel in Boise in just a few hours to rest up for an early flight to Orlando for Garrett's Make-A-Wish trip!!!! Bags packed.....and a tad overweight probably. Carry-ons in the car.....except my two that will NEVER hold all the stuff....meds, cameras, electronic babysitting devices. And so much joy and excitement that I cannot think of a better way to enjoy our little family together!!! Looking forward to a  magical week. I hope to blog photos after kiddos are in bed at night, but no promises!!

Thank you to each of you who have supported, prayed for, and followed our family here. We are so thankful for you!!

Godspeed,
CL

Saturday, October 20, 2012

Video: Garrett Practicing Disney Rides

video
This video quality is dark and poor quality as it is from my little phone. That said, if you can even get a hundredth of the excitement Garrett is showing, you will get the point! We had him watching Youtube videos of Disney World and other parks we can enjoy while on his wish trip, and this is him watching Splash Mountain. After a few seconds, notice the hands in the air!! He was trembling, squealing, and laughing all at once! BEAUTIFUL!!!!

Thursday, October 18, 2012

Make A Wish Trip Prep

 Give Kids the World Visitors' Center
GKTW Train Station!!!
I imagine Garrett will wear the tracks out!!!

It started this morning!! I actually gathered a few things for packing! In case this is news to you, we leave Monday for Orlando, Florida for a week long Make A Wish trip to Walt Disney World and other parks for Garrett! My mom and Grouchy's mom will meet us there, and Grouchy did make it home and will be coming also! We were unsure of how the soybean harvest would go, so Daddy getting to come was a last minute deal. I am so so so excited he gets to be with us. THE WHOLE FAMILY....YAY!!!!

Monday is a travel day, and then we do parks Tuesday through Saturday and return on Sunday. Garrett has been watching some Youtube videos every night with me. We have watched the character who represents Give Kids the World (our dreamy accommodations for the week) Mayor Clayton, tuck kids into bed!!! Mayor Clayton is a huge rabbit, and he is so kind and funny and gentle tucking each MAW kiddo at GKTW into bed one night of their stay. I am glad we watched the video because I think it might have scared Garrett!!! He watched Mayor Clayton tuck kids into bed over and over and over and over!!! We have watched "It's a Small World" ride over and over many times also. I think he might spend all day on that one!! He also liked some of the roller coasters, though I am not sure if he can ride on all of them. He isn't 48 inches tall just yet. I also bought a couple of inexpensive apps for his iTouch that have thousands of Disney World photos for him to see. He is getting the idea, I think!!!

Not so sure what to expect he will enjoy, so I am going into the week with little "expectation" for Garrett. This is his trip, and if that means staying at GKTW village to ride the train and eat ice cream and play on the life size Candyland game and in the pool and on the beautiful accessible playground, so be it! Thankfully, my mom, Grouchy and his mom will be there so we can divide and conquer with Addie and Ainslee.

Tonight I meet with one of our wish grantors who will give me the itinerary and go over details with me. I think reality of it will maybe begin to sink in more then......in a marvelous way!!! It will be in the upper 80s there in the daytime, so we will get to be in summer mode for a week!! Then we will come home with about a month left before the snow begins here in Idaho....weird!! But wonderful!!

I hope this trip yields many miracles and magical moments for our family. The challenges Garrett and our family have faced have been big. But we have begun getting into Garrett's life more, and by that I mean maybe I have gotten that way more. Grouchy has probably been there better and longer than me, I think. I began a book this morning, Born On a Blue Day. It is the biography of an autistic savant. In the book he describes how he felt, viewed things, played, interacted, feared, overcame, and focused as a kid and now as an amazingly brilliant man. It has opened my eyes to the different world our son explores daily through his very different sensory system and mind. It is eye-opening. It is a revelation of my son's differences that I must never tire of exploring and understanding. He is my child. I can never grow weary of him or his world or his needs. Great read! I recommend the book to anyone!!

On a different note, not to dampen to mood of this very gracious, magical, and generous gift of a once-in-a-lifetime trip for our whole household, I truly grapple with the fact we get a trip, that we qualify for the wish, that our little boy has a life-shortening disease. Kind of like the cute Mito Mike stuffed turtle Dr. Koenig handed Garrett the day he was diagnosed, while the trip is beyond wonderful, the fact it has happened for Garrett means, well, the disease exists. And what does our family do to change that for others in the future?

Okay, no more dwelling on the sad or the challenges and on to a FABULOUS, MAGICAL, SOOOOOOOOOO APPRECIATED trip to the "happiest place on Earth!" Gigantic thank you to Make A Wish Idaho and all of the people around the country who generously support Make A Wish. This is such a dream come true, and Garrett is so so so so so excited!!!! Also, January first, if you are local or wish to fly/drive out to join me, I will be doing the Make A Wish Polar Plunge at Lucky Peak, Idaho, to raise money for Make A Wish. It is $50 minimum to take a polar plunge into the icy waters of the lake with me, or you can just send me some money as a MAW donation and I will let you just see the photos later....HA!!!!

Godspeed,
Clara-Leigh
When asked about Disney World...

Wednesday, October 17, 2012

Voiding Dysfunction Therapy Session #2

Session two was traumatic way before we arrived. I picked Garrett up from school early, and of course he asked where we were going. I told him we were going to meet up with one of his caregivers and go to therapy. He freaked. Poor guy. Not only did he freak, but he freaked the whole hour of driving. He wasn't screaming the WHOLE time, but he did fuss a lot and asked over and over if he could go to his "old therapy," which was regular physical therapy, not the poop therapy.

We arrived, and he was so anxious and upset. He had to wait for the therapist for a while, and he was screaming that he wanted to go ahead into his appointment and not wait. He just wanted to get it over with, I think.

Once in the room, I had to leave the caregiver with Garrett and the therapist as Garrett's Mito nurse had returned a call to me that was pretty important. When I returned, Garrett was sitting in a chair and the therapist was on the floor and they were practicing potty posture and exercises. And Garrett was going great! Unfortunately, the therapist didn't make Garrett put the stickers back on his bum to work on the computer games because had he, Garrett would have gotten over the fear faster. Oh well, we have exercises of how to sit, breath, push belly big and then push. Maybe doing these exercises will help him before we have our third appointment in a couple weeks.

He was off the rest of the day when we went to an indoor trampoline park and McDonalds. He had exhausted himself during the drive to the appointment and during the appointment. Poor dude!!!

Oh, I forgot to explain the games with the stickers on the bum and the computer. So no, Dad, they do not hook Garrett to electrodes and shock him!!! They place three stickers on his bum and leads connect the stickers (like an EKG) to a computer. The therapist showed Garrett by using the stickers on his own arm. There are many games on the computer where actions of puzzles, cars, wooden people, etc., make different movements or sounds as the patient uses the pelvic floor muscles correctly and the computer reads the correct responses.

Godspeed,
Clara-Leigh

Just a Photo.

Addie, Garrett and Ainslee
at Deer Flat Church before morning worship on 10-14-12

Sunday, October 14, 2012

Is This What "Regression" Looks Like?


Doctors have always, always asked, "Have you seen Garrett ever experience any REGRESSION?" The only regression I could ever note in the past was writing his name. At the end of his preschool special needs program, year one, he could write his name on an 8.5 x 11 paper. It was quite crooked and shaky looking, but if you knew what the word was planned to be, you could see it! Then that skill went away for a whole year. It is slowly making its way back. But now we think we see regression.

While the poop issue, as shared in the last post, is now more understood, thus we have all re-thought our attitudes and such, the pee issue is different. He went from independently going, finally, beginning last school year, to now sometimes going on his own but usually being forced. Then the newest thing is wet underwear - daily. He had a good, long man-pee outdoors in the back yard tonight, totally on his own, his idea. Within 20 minutes of that, we went to his room to get ready for bed and he said, "Sorry mommy I pee pee in my pants but didn't want to. I DON'T KNOW IT IS COMING OUT!!!!? He is very upset when this happens and apologizes profusely. He is mad about it, and understandably so. Here is something he CAN DO all by himself standing or sitting, but for some reason that, too is being taken away!!! And now I know how his muscles are fighting him for poop, I am wondering what is going on with the urine. Had this been our middle child, Ainslee, I would think it behavioral in nature, and yes, I have considered that with Garrett. But when it happens, he is so disappointed and upset about it. He keeps asking why it keeps happening and why it won't let him know.

My heart aches for this cute dude. The more I see happening, I am slowly realizing the reality that maybe I have still been in denial, like my sweet mom pointed out this summer. I am inherently selfish. Very selfish. And I have brewed over his behaviors and made those closest to me miserable too. Bottom line is that I cannot get tired of any of this situation because Garrett is my son and I am blessed to be his mom. God has trusted nutty me to be his mom.....makes me question God's judgment or His sense of humor!!! This is real. No, we have not seen any regression that made me worry......besides the handwriting.....until now. It is beginning. Regression.

On a very happy note, Garrett weighed-in a whopping 45 pounds this week at the doctor's office!! He has never been that heavy!! I was excited to see he is growing still! Sometimes we wonder! He is such a slim little dude!

Disney World Make A Wish trip is one week away! I cannot believe it is actually going to happen. The past week was rough with Garrett's behaviors and sensory issues increasing, so I hope to hear back from his developmental pediatrician tomorrow to see if we can adjust some meds. I want him to be able to enjoy Disney World as he wants to without the distraction of his own challenges, if that makes sense. It's like there is so much noise in his head that he cannot keep it together sometimes. I got two apps for his iTouch so he can see photos other people have taken at Disney World so he can sort of put things in his mind to look for and anticipate. Hopefully our internet will speed up enough for us to preview some of the rides I think he will love. Some wonderful parents of autistic kiddos have shared lots of helpful info about taking Garrett-like kids to Disney parks, and for the most part, it sounds like as long as I am on Garrett-time, all should be good!!!!

Credits to Shelby McRae once again for the wonderful photo above!!! She popped in for a surprise visit last week and surprised ALL of us!!! THANK YOU SHELBY!! Then we got to see her sister, Ali....what a treat!!!

Many thanks to you for following us and keeping Garrett in your prayers.
Godspeed,
Clara-Leigh

Tuesday, October 9, 2012

Voiding Dysfunction Therapy Session #1

A couple of months ago, Garrett's G.I. specialist referred him to a physical therapist who specializes in voiding dysfunction. The PT office called to set up a schedule of 6 sessions, one per week for 6 weeks. Today was the first one. The therapist was a nice man, but he had to place 3 stickers on Garrett: one on the inside of each rear cheek and one on his left hip. This was the worst as Garrett lost his brain and was horrified and angry and just plain wasn't going to comply. After a half hour of the screaming and resisting, we coaxed him into at least getting onto the table and letting us try. Finally, with stickers/electrodes in place, the PT measured Garrett's pelvic floor muscle responses when he "held poop in" and when he "pushed poop out." When asked to hold it, Garrett did nothing. He said he didn't know how, thus the computer measuring the response showed no change in the pelvic floor muscles. However, when asked to push poop out, the computer registered exactly what the G.I. specialist thought. Garrett's pelvic floor muscles are doing exactly the opposite of yours and mine when we go potty. His tense and don't allow for things to happen "down there" at all. Poor little dude has been mechanically incapable of pooping intentionally his whole life. Now at age 7, we think he may benefit from the therapy, but only time and lots of coaxing back into the "office with the white stickers" will tell. Of course, I feel guilty, not that it is at all about me, except that I have been giving him negative feedback and negative emotions when I continually have issues like the one pictured below:


It has been a guessing game until today. Does he know what is going on with that part of his body? Is this mechanical? Is it behavioral? The scopes he has had made it appear he is structurally normal, at least. But now we know. Garrett's inability to poop on the toilet isn't there. We do hope that now we can move forward with this therapy and maybe help him gain control and thus more independence. He gets so incredibly upset on days when he has poops like the one in the photo ALL DAY. And yes, he tells us he doesn't know when it is happening. Also, one other clue that the pelvic floor muscle response  or lack-of was the issue is that usually when he poops he is in bed before going to sleep. So he is relaxing and then the poop can finally travel the exit route.

Sorry if this is T.M.I for you, but for some other of you, I hope maybe this leads you in a new direction or gives you some ideas or hope! For me, I crawl, and I mean almost literally CRAWL in bed after this long, but wonderful day, and pray for forgiveness for not always being the loving, positive mom that my kid needs!!

Godspeed,
CL

Friday, October 5, 2012

Sometimes.....


Sometimes God tells us things through His creation. That's all I have to say!!

Godspeed,
Clara-Leigh

Sunday, September 30, 2012

BEAUTIFUL Surprise!!!

After a beautiful day spent together as a family, we had the most amazing surprise!! Remember Shelby who had worked as Garrett's developmental therapist (and a dear friend of our family's)?? She moved four hours east for her senior year of high school, and we have Skyped her lots and talked to her, but not seen her since. She MADE ME cry when she surprised us by coming by with some donuts (DONUTS, Andrea's donuts......almost a spiritual experience!! A whole post would not be enough to devote to their deliciousness!!)! We had no idea she was in town. She saw Garrett and started to cry. Then I started to cry, and Garrett looked up at all of us and hid behind Addie's legs and tried to figure it out! Then he played and played with Shelby and Addie and Ainslee indoors and outside. It was a beautiful evening. And I took photos, but my memory card isn't letting me use them!! Such a wonderful way to end the weekend. Shelby plans to have lunch with Garrett at school tomorrow....fun!!! Wow, we love Shelby and miss her so much!!!

Saturday, September 29, 2012

Faithful Friend

Ernie and Ainslee, playing........






One Hour Boy...slightly heavy topic, be warned.

One hour. That's it. No more. Not one second........

Today we went on an adventure. Garrett's personal care/developmental therapist hopped in our car today and went with us on an adventure she came up with for Garrett. We dropped Addie off at a dance workshop on the first leg of the trip, then the caregiver, RaeAnn, Ainslee and I went to the Julia Davis Park near Boise State University for the Museum Comes to Life day. It is a wonderful event with music, FOOD, people dressed in period costumed from all eras of history, and museum buildings that are only open this one day per year. RaeAnn had brought a newspaper to Garrett that described the upcoming event, and there was a great photo of two knights sword fighting on the front page of the paper. She talked it over with him for the past week, and he said he wanted to "go see the knights!" We parked near the area right where the knights and queen and such had set up camp. He liked looking at the knights but stood almost behind us and peeked at them when they had sword fights. He had brought a couple of small knights the size of the little plastic army men that I had around as a kid. No, I was never a girly-girl until I was a rodeo queen, but even then...sorry, resolve not to digress. Garrett carried his tiny knights around and ate some kettle corn, but then the one hour mark came and he was D-O-N-E. And I mean done!!! And it was exactly at the one hour mark. I had noticed this trend last weekend or maybe the week before when we had to go to a local ranch for a function where the girls were camping with horses near the creek, and even with lots of open space, clean, beautiful, WET creek and his own lunchbox filled with his toys, one hour was it. Then later that same day at another function, again, just an hour. NOT ONE SECOND LONGER.

Looks like another phase, stage, something. One single hour. He had his personal caregiver RaeAnn, whom he adores, but would not leave my side. Ainslee and I could have left them there for another couple hours while I ran to get Addie after a dance clinic and then took her to shop for tights and dance shoes and then picked Grouchy up from the airport. But nope, he had to be with me, and so his caregiver had to tag along, and then he was still noisy in the car, melted down at the museum deal, and really, it was quite an aggravating experience.  It seemed logical I could go to this museum thing outdoors with all these kids activities, leave for a bit, return to get them....but nope!! And truly I have to be careful if I leave him with RaeAnn and he pitches a fit since I sincerely believe someone might think she was kidnapping him if he has one of his loud, out of control fits he has sometimes had lately when I leave. Out of the blue....BAM!!! But a year ago this could have worked. We are not going forward here!!! Note: I am still glad we went and RaeAnn was very delighted to share the knights with Garrett, and I am so blessed by her!!

You know, in some ways, Garrett is getting better...... at some things, but not necessarily and not really in areas that help him work within the normal boundaries of other people and events. But then days like this, and when I realize things like the one hour deal, I realize how restricting this is. A year ago, you could have stayed all day with him in a huge outdoor park with all that activity and space to roam and all, but now it is one hour, no more. Shoot, we never made it to see music or dancing. Yes, I had to go get Addie, but Garrett COULD HAVE stayed with RaeAnn at the park and had .......fun........like other kids.......??? And we could have come back and maybe stayed longer so my girls had a chance to enjoy it. But nope. Not in the cards. So here we are in that family of two sides.....stuff we take Garrett to for one hour and for no one else to enjoy, or leave him behind with a caregiver and we get to go without him. Grrrr.

This mental stuff is really, really tough. RaeAnn is wonderful with Garrett. But then she worked the psych ward of a hospital, has worked at nursing homes, and more. So she is okay with crazy. And I mean that in a loving way toward her and my son. But for me, crazy is exhausting. Give me an ADHD kid, someone with a big mouth, a hyper kid, a "slow" kid......but when things just don't make sense and there is constant NOISE and nothing I can seem to do to ever make it better. It is insanity. I go back to that place today when I told my mom over the phone, through my huge tears, that Garrett had to be retarded because things he was doing were so, so, so insane. Literally crazy. I told Grouchy the same in a frustrated rant one day. And the psychologist confirmed it a month or so later. I was right. Mental illness, retardation. It is nutty. It doesn't make sense. It is exhausting.

Most people are nothing but encouraging and uplifting when it comes to their experiences with Garrett. A friend was just here last night who is a nurse and tried a bathroom toilet training "trick" of trying to coax Garrett to poop on the potty so he could ring a bell we have. She was so sweet and kind to "try what worked on her kid." I didn't have the heart to tell her she might as well speed up the clock and waste more of her life trying stuff like that. Doesn't work. Most of you who know Garrett see wonderful. Of if I were able to trade places and only see Garrett at church, in school, etc. I see it too, daily, I truly do. But I also have this very dark place in my heart where my mind wanders....no, it doesn't wander. Maybe it lives in the dark place but comes out more and more. It's weird. I am stuck. Garrett doesn't know, at least.  But then he is such a blessing, and I try so hard every day not to take Garrett for granted. He is sweet and funny. It isn't all bad. He is an angel.....for an hour!!! HA!

A month ago Addie, Ainslee and I flew to Louisiana to meet up with Grouch for our soybean harvest. I drove a combine until the hurricane came and on a couple of days after. I will never, ever forget coming home to my parents here in the bunkhouse who had Garrett for 3 weeks. He started school while I was away, so there was some relief, but still, it was 3 weeks!!! They had a nice time with him, but my sweet mom shared her experience with Garrett the day I left as "eye-opening." Apparently, Garrett had many off moments a couple of times that first day, and through some welling-up of tears, my mom shared that she "got it" more than ever. She saw, lived, and felt the insanity, the helplessness, and just for a fraction of a fraction of a second (my mom is the most optimistic person you could know!!!!), the hopelessness. She would be the LAST PERSON to ever lose HOPE in Garrett, but he took her to the place I am trying to describe, and once she had been there, Mom and I could communicate even better regarding my feelings and dashed hopes and my still-somewhat-strong wishes. She followed that with a couple other optimism pep talks over her last month here, but still, having been to the depths of this reality was helpful for Mom and me to team up on this even more.

Then Mom said something profound another time. While I look at Garrett as parts or moments good or bad or amazing, Mom can step back and see the whole picture. She has been by my side since day one, able to listen, encourage me, help with Garrett. It was an emotional moment for us both, I think, but she said, "It is this DISEASE!!! I can still look back and remember that precious, happiest baby I had ever known. He was not headed this direction in any way at all. Then this disease took him from us. It changed him. It has messed with his little brain and body, and it is terrible and unfair and.......Mito has taken him from us!!!" And I think she had to stop there. And while I try to separate Mito from Garrett and even some days hope it is all going to just get better or resolve, HELLO, he is seven, diapers at night, wetting his clothes almost daily, soaking through nighttime diapers needing linens changed on his bed daily, has some freaky ticks and habits, has major sensory issues, is pretty unpredictable,not able to be left alone, no bowel control, and very, very needy emotionally, on 22 doses of meds and supplements per day, and is a mental moving target. She is right. Mito has taken our child. While his little spirit, no, his AMAZINGLY LARGE SPIRIT resides in our home, in his tiny body, he isn't the sweet, happy, easy baby he was. He did change, a lot, from who he was before this disease took so much of him.

I have written before about my strong desire to sit on God's knee and ask him all sorts of questions when I get to be with Him. But I think I am past that. The insanity of Garrett has erased my desire to ask why. Sometimes I think I know lots of reasons why.

I have written before about how I want to punch God in the nose and scream at him, "HOW COULD YOU DO THIS TO ANYONE, ESPECIALLY MY SON AND OUR FAMILY!?!?!?!?" But I have gotten past that also.

Tonight I long to just crawl into God's lap, put my head against His chest and take a grasp of His robe into my hand and bring it to my cheek, close my eyes, and rest. Rest in Him. I am thankful He is there. Without that hope and confidence, this would be unbearable.

Godspeed,
Clara-Leigh