Saturday, January 29, 2011

Seeing Subtle Changes, Maybe?

Garrett has been on Zoloft along with the previously prescribed Risperidone for 48 hours, and Grouchy and I think we are seeing some good results. Not huge, but noticeable!! Sking last night with him, he never screamed or freaked out. He did not listen very well, but I write that off to his being so entranced by the snow, scooting his skis back and forth and riding the moving sidewalk lift. Even today when his 4-wheeler stopped working the way he wanted it to, he didn't pitch a fit, rather he came calmly inside the barn to tell Grouchy it was not working right. I waited for the melt, but it didn't happen! We will not hold our breaths as my mom is here right now, so Garrett is getting lots and lots of attention, and it seems he acts out more the less he gets. But still, it is encouraging to see something!!

This morning I took Addie to the after hours clinic, and while her strep test came back negative, the nurse practitioner said she is almost certain she has strep, but it is too early to show on the quick office test. She treated her with an antibiotic to help her. WHEW, glad we went!!

After Addie and I returned from the big city...ha....and got her meds started, Grouchy and I headed out on a pre-planned date evening/night. How fun!!!!! Usually our evening out might be some errands and then Outback Steakhouse for dinner, then home. But tonight Grouchy had a very COOL idea for a date!!!! We loaded up and headed back up the mountain to SKI!!! YAY!!! We had such a great time, and I got off of the bunny slope again and made it down a pretty scary green one without loss of limb or life!!! It was an adrenaline rush, and it was dark with the lights on making it very hard to get perspective for our eyes for speed and terrain!! Night skiing is such a blast to me. The snow sparkles, and it feels so magical! On the way home, we stopped and grabbed an inexpensive Mexican meal that we shared, then headed home by 8 pm. It was such a fun time, and we can't wait to go together again!!! Much healthier than just eating dinner out.....unless, of course, I crash sking!!!

Hugs to everyone, and please pray a special prayer for a boy named Cooper who is battling for each minute of life due to his fight against Mitochondrial Disease.

Godspeed,
Clara-Leigh

Friday, January 28, 2011

Garrett Skis and My Mom Tubes ! ! !

Garrett got to snow ski for the first time today, and my mom, whom we call Nina (long I in that!), went tubing with the kiddos and me. Grouchy enjoyed skiing alone, and when we returned to the slopes to go skiing, he met us and said he had ventured off the "green" beginner slopes and skied a "blue," or intermediate slope!! Pleasant surpririse to us, the slopes were very good without any ice...YAY!! So after we tubed, we headed to the rental shop at the lodge and rented skis for Garrett. He was fine with the boots....a HUGE surprise to me!! AND he was okay with the skis!! His favorite part was to let me hold under his arms and he would just slide his feet back and forth really fast and go nowhere. My sensory boy.....weird stuff to most of us, but it was completely, wonderfully fun AND funny to him!! Okay...... We rode together on the magic carpet ski lift (same as a moving sidewalk ) about 6 times, and he got better each time. Unfortunately, we could not get the contraption to work that holds the front tips of the skis together because we had to have our own skis for him to get that to work, but we did have a backpack/harness deal we bought to help hold him, slow him, and pick him up, and that was good. Before he was done completely, as in exhausted, we stopped, so we hope he will want to go again!! While tubing, Addie started feeling bad and was out of energy and feeling cold even though it was very warm on the mountain, and sure enough, she had a fever. She took a blanket to the lodge with my mom and was sooooooooo sad not to ski. She simply did not have the energy. Here's the really dumb part of this. She is the only one of our kiddos NOT vaccinated for the flu....my HUGE bad. If she still has fever tomorrow morning when I return home from a Muscular Dystrophy Walk in the morning, I will take her to the doc. Gave her Tylenol on the mountain and again tonight. She is better on Tylenol but obviously not well. She was very kind and patient to hang in the lodge to let us ski with Garrett and Ainslee.

Here's a video of my little Garrett tubing all alone. He kept saying I need to LET HIM GO, so I did, and I got this sweet footage!!


Godspeed,


Clara-Leigh




video

Thursday, January 27, 2011

NO CELIAC DISEASE!!!!!

Got a wonderful message tonight from the G.I. folks saying that Garrett's genetics showed NO Celiac Disease.......YAAAAAAAY!!!!!!
No need to go gluten free, and based on the deductions I have made, I do not think gluten free would help remedy the Autism because the Autism seems to be coming from the mitochondrial problems. All interesting, and I hardly know anything!!!

We made it home last night with a very long wait to get on our first flight because Mom and I chose the 4 hour wait before our first of two flights over hanging out shopping or at more parks with Garrett due to evening rush hour issues all around Houston. We did enjoy taking Garrett to a park we had always seen but never visited. We went and got to ride a train there twice!! Garrett had a blast!! More photos later. First flight, Mom put the movie "Up" on her Mac notebook for Garrett. He tried to fall asleep at the end of that flight, but I kept tickling him! We had to make a very quick pace to the connection flight in Colorado, and thank God they held the plane for us!! Our first flight ran delayed, but the second one was delayed, too. The second flight, Garrett was lying down and fast asleep before I had our carry-on bags stowed!!! He slept all the way through the landing, first time ever...WONDERFUL!!! But we had to wake him when we arrived in Boise, and he had to be strapped into his Convaid Scout stroller so we could keep him with us. He was raging until he fell asleep leaning on my mom's arm!!

We arrived home at midnight, and Garrett took a great nap after school today. We are hoping to go to Bogus Basin to go snow tubing and hopefully skiing!! Garrett may finally get a chance to learn on his own skis!!

I typed a long update but cannot get it to cut and paste from my word processing appointment yet. SO this is it!!!

Girls enjoyed their first homeschool co-op day here, so that was really great. Garrett started the Zoloft tonight, so we will see if we see any affects tomorrow!!

Godspeed,
Clara-Leigh

Tuesday, January 25, 2011

Houston Medical Summary

We woke at 5:30 this morning to drive 4 miles, which translates into 45 minutes in urban traffic, to begin the gastric emptying scan we agreed to as part of a research project Mitochondrial Disease and gastric emptying. I knew from a pervious study Garrett had when he was inpatient for almost a month in 2006, that the scan usually involved having the patient eat or drink something with Baruim in it, then lie very still for over an hour for a series of photos to be taken....like an x-ray. I mentioned to the physician in charge of the study WAAAAY back when he first approached us, that Garrett would NOT be able to lie still for a study. He assured me that the techinicians "deal with kids like this every day!" Humph....he had no idea what kid he signed up for this!! We arrived around 7:30, vallet parked, made it through registration and even did fine not using Garrett's name, but rather his assigned research number, and found the right area of the hospital. Garrett gladly ate about a cup of Barium-spiked scrambled eggs, a bite of bread and had some milk. He could not eat or drink after bedtime last night, so anything edible was good to him!! The tech asked me to have him lay on a table so he could watch cartoons while the tech would roll the table in between these panels on the machine that did the imaging. NO WAY, Garrett knew!!! Not happening!! So after I "rode the moving bed" and we all tried to convince him he coudl do it, the tech gave up and just took a series of 1 minute images, 5 sets with time between each one to leave the area or go to our appointment with Dr. Koenig. That all ended around 1:45, finally, and after talking to the research physician on the study, we do not think the data will be helpful because it was not done per protocol. Bummer.

The appointment and study were done across the street from each other, and we could take a skywalk where Garrett could watch the trains go up and down the streets in Houston. Here is Garrett enjoying the view:

First, a resident, Dr. D, she asked Garrett to call her, came in and asked all sorts of questions to update Garrett's chart. She was one of the most interesting, kind, caring physicians I have EVER had the chance to meet. Garrett LOVED her!! This photo was taken while I was talking with Dr. Koenig and Garrett was being a loud terror. Dr. D convinced him to come under the blanket with her and hide!!! This lady will make a child's day and will make parents feel their child is in the very, very best care someday when she is a pediatric neurologist. We pray she continues with this spirit!!
Dr. D asked questions in sections based on different aspects of Garrett's body such as eyes, ears, pulm., cardiology, neuro.....and I was holding it all together talking to her, answering questions about when was last appointment in each discipline, what were new doctors' names and contact info in Idaho, etc., and then we got to neurology. Uh-oh. I was fine telling her we were concerned about upcoming IEP re-do and I.Q. testing because he is getting older. I was even okay telling her how concerned we were about his future and how he will interact with the world. She was so kind to me!! But then I started looking at my list of questions as we talked and I saw the word circled on my paper "BEHAVIOR." I started trying to describe the challenges we have parenting him, traveling with him...just short drives some days, the insanity of some of the interactions and his own frustration. I felt myself welling up inside and was about to tell her I was sorry for the emotions being so on the surface when we met eyes and I LOST IT!!! Never let the tears fall out of the lower eye lid, but I was looking at her through a fish bowl of tears, no joke!! I shared some situations and our sadness over the division in our family like not taking Garrett many places with us, people's comments to us in public about his behavior, his own terrible frustration, etc. She lovingly listened and comforted me and luckily my mom had just taken Garrett for a walk, so we had a minute to talk alone. I shared all the discipline methods we had tried, books we have read, strategies we invented and how it was all crap. How nothing was working and how things were getting worse, not better, even though he is already on one med for psych stuff. It finally ended. I let the tears reabsorb, we had to leave for another scan for the study, and I returned and Dr. Koenig came in. I almost lost it then. I cannot describe the relief it brings me to sit face to face with an expert in this disease and a person I know takes my child's case to heart!! She brought up behavior right away, as I am sure Dr. D had briefed Dr. Koenig about everything......including my fall-apart about neuro concerns!! After trying to check his reflexes and him losing his mind screaming, trembling and crying, then hitting himself and frothing at the mouth before realizing it tickled and did not hurt, she told us she wanted to make him mad or upset to watch his reaction. She said much of what we see with him is an unnaturally high level of anxiety and OCD. She said she thinks I have some anxiety sometimes based on her getting to know me (my sweet mom defended me when she said that, and I said that yes, I certainly have anxiety now I have Garrett!!), and she said she has it too, but there are healthy levels and unhealthy ones. She said these things are around to be inherited and if any relative has any of these issues, they are quite easily passed along to other generations. When a child has even some traces of any inherited mental issues such as anxiety, OCD, etc., and then they have Mito, their body does not make enough energy for their brain to appropriately process and somewhat control things. She said he is the worse anxiety case she has ever seen in a child his age (5.5 yrs.). Said he feels miserable and has no way to pull himself together . It likely causes many of the behavioral issues we see daily. She recommended trying Zoloft to try to curb some of this. She also wants us to start seeing a doctor in the psych field to start counseling and work on these issues. She then said that Garrett is on the Autism spectrum, acknowledging his very social and talkative nature but reminding us that the spectrum is broad and while the Mito likely CAUSES the Autism, he is clearly Autistic. Now with the Autism, she said, comes the sensory problems and the ADHD. So it IS all related. She wants him to stay on his Risperidone for the hyperactivity he has, but add the Zoloft. It is being filled tonight. Other than that, she pointed out to the residents how his tone is low, he is weak, his upper body is weaker than lower, he has Gowers Sign when trying to get up from the floor and other physical traits we know about. She said his kyphosis (the upper back looking like he is slumping, much like an older female will do when back starts to hump over) may be more remarkable than last visit in June. She had blood drawn and urine collected for updated labs, and these will measure lactate, pyruvate, ammonia, liver and kidney function, and more. Should be back next week. She is leaving G.I issues up to our local G.I person in Boise whom we LOVE. That is, unless he quits working altogether in the G.I. department, in which case she wants to be contacted. She wants to see if he has elevated ammonia, which would explain the leg pain he has started to complain about.
And that was that. I spilled my guts more at the end of the appointment just blabbing about what we need to do, how we want to know what's in the future, etc. And of course, no answers.
Here are my mom and Garrett chatting in the exam room:
Then it was off to lunch, last scan, tape a urine bag to Garrett to get a sample, wait FOREVER for him to pee....who would have known taping plastic to a kid's scrotum would make him NOT EVER PEE??? HA! Then finally after a little pee, blood work and finally back to the hotel while Mom kept him while I got to go for dinner with two friends who live an hour from Houston and came in to visit. I came back, said good-byes and got ready for bed with Garrett begging us to turn off the lights. He was only in bed a few minutes, and then this:

I had the honor to once again get to visit with a very, very dear mom, Missy Knight, today. I met her in the spring of last year when she come out to the surgical waiting area while Garrett and another of Dr. Koenig's patients had muscle biopsies. I met Missy and her PRECIOUS son Samuel and really stood there in awe of this beautiful little boy, Samuel, who then and there STOLE MY HEART!!! Last year he lost his battle with Mito, and Missy, instead of stopping living like I estimate I would in her situation, decided to volunteer three full days per week working to help Dr. Koenig and her patients in the office. I hugged her neck and told her how amazed I am by her love and drive. This gal just lost her son and chooses to get back in the fight for the rest of the kiddos. THAT, my friends, is FAITH, HOPE, and LOVE. She gave us our checkout instructions, prescription, and will be sending us info on two studies going on now. One is for diagnosing using new genetics technology, and another is a drug trial. I look forward to reviewing all that info when Missy gets it to me. Missy, THANK YOU!!!!!!!! As if you are not already such an inspiration online through your blog and your message board interaction with all of us, you really have gone above and beyond and NOT given up. We all love and appreciate you!! I had to embarrassingly admit to her that I did not immediately place her when I saw her because I gawked over Samuel so much I barely remembered HER....embarrassing!!! But true. Samuel is a beautiful, perfect angel.
Please stop reading here if you do not want to read thoughts that may be disturbing or somewhat painful. I am about to get really, seriously honest and open.....

Garrett had a big day today. Considering that, he was pretty amazing. Yes, there were many outbursts, lots of screaming, and lots of pulling his new suitcase around with people staring!! I blog tonight in a weird place...mood-wise. I am thrilled we have some things we can do to try to help him more. I am completely discouraged that some of my worst fears are coming true: my child had mental illness issues, not just one, but several. Horrifies me. Before I had children, I shared with my mom that I wished I could adopt handicapped children and raise them. The handicaps I mentioned then were physical. If I had a child with no legs and no arms, by God if they told me they wanted to summit Everest, I could make it happen, and for those of you who know me as an only child, you know I MEANT IT!! I also told her on more than one occasion before and during the arrival of our three angels, that my worst fear, maybe worse than the fear of their having cancer or dying, was the fear one would have a mental illness or challenge. And by the way, I also told my mom and Grouchy that I knew something was not right with Garrett when he was still in my belly. I always felt so helpless when I thought of the challenge of raising a child like that. To date Garrett is OCD, Autistic, has anxiety issues, ADHD and sensory processing disorder. It has happened. I am still alive, but my very soul is crushed, smashed and very sad. I worry too much about the future, and sometimes is handicaps ME!! And more times than not, I am very happy, fulfilled, and sometimes even okay with things. However, I have to get over myself now. I have to give up the what-if's and be okay with the here-we-are's. It cannot be about me anymore, ever. I have to focus more on the here and now.....not the teen I am afraid will not take his meds and get into serious trouble or the adult with mental who cannot ever function in the real world, or worse yet, the mentally unstable adult in the world after I am dead and gone someday. Who will love him, what will his living conditions be? Will he and can he be happy? Independent? Loved? I must learn to push it aside and beg God for the mercy of sheltering me from my own thoughts. But most of all, ask God to heal Garrett in the ways he chooses and help him grow into the person only God can make him. That's a hard prayer because it means I have to be okay with things no matter what, right? Faith, right? Uuuuggghhh.
Thank you if you made it this far!! I appreciate your concern and prayers, and I hope you have been blessed in all you experienced today. Thank you for standing beside me.
Godspeed,
Clara-Leigh

Monday, January 24, 2011

Made It To Houston! (sanely)


We woke up at 4 a.m today and drove in the crisp, clear morning to the Boise airport with no issues! We got through security and boarded with no issues. We had a great first flight sitting with a very nice man who loves to golf and bird hunt and made me promise to get Grouchy to get in touch with him. Then we had a three hour layover where we rode the underground train for an hour, shopped, ate and then rode the moving sidewalks for another hour!! While we were shopping, we found this really cool kids' carry-on suitcase made to carry, pull or RIDE!!!! Garrett had fun trying it out, and I opted to buy it as he seemed so fascinated. Glad I got it because he truly LOVES it!! Sometimes I buy him things and he loves them, but only for a short while. THIS, he LOVES....YAY!!! I am posting a photo. It is called a Trunki, and it is just plain CUTE!!! It is made by the company Melissa & Doug. I will let you know if it holds up, but so far it has done about 4 miles in the Denver airport, a half mile in Houston and now being tested further in our hotel!!! So far, so good!
Our second flight was harder for Garrett, but we had another really nice man sitting in our row who has two boys and loved entertaining Garrett!!! HOW BLESSED!!!!! Plus, to top that, he has a nephew with Mitochondrial Disease....how wild is that??? So he tried so hard to help me and to give Garrett the attention he wanted. It was so nice!
My mom met us at our gate in Houston as she had flown down from Birmingham, Alabama to meet us. We got our rental tin can.....ooooo....did I just say that?? I meant rental "CAR," and GPS got us to a Hampton Inn only 4 miles but about an hour's drive in the morning to the appointments.
We have ordered Papa John's pizza, and we are letting Garrett play on my mom's computer with his Webkinz Jr. Next is a shower, then BED!! YAY!!! We have to leave here at 6 a.m. YUCK!! Hoping to see a couple of friends who live here, then I got an email from a mom online who I met on one of the Mito message boards, and we might get to chat for a few minutes face to face tomorrow!! COOL!!!
Blessings to each of you, and thank you for the thoughts, posts and prayers!!
Godspeed,
Clara-Leigh

Sunday, January 23, 2011

Traveling In the Morning

We head to Houston very early in the morning to have Garrett's checkup with his Mitochondrial Disease specialist.

Travel with Garrett is one of two ways:
1) Absolutely marvelous with him chatting, playing, and at landing, shouting,"We did it. We made it!!" and making the whole plane giggle at him.

OR

2) Complete hell with kicking screaming, napping then waking in a terror and not being consolable.

And there is no happy medium. It's either blissfully wonderful or a nightmare!
So I am asking for prayers....mainly for those passengers traveling anywhere in physical or audio range of us!!

It will be nice to meet up with my amazing mom in the airport. She is flying down from Alabama, then flying back to Idaho with us Wednesday and staying several days. We already have snow tubing reservations made for all of us Friday, so she can't chicken out now!! Oh, and my twin sister separated at birth....not really, but could be.....Kim. She will hopefully make the trek fromsouth of Houston to meet up with us, too.

Hope your day has been great and that you and your family are happy and safe. Will post when we return from Houston. Praying we have a good check-up and learn more about how to help our little dude!!

Godspeed,
Clara-Leigh

Friday, January 21, 2011

No Snow, But BIGGER Prayers Answered!

In 2009 after being on a message board for parents with children with hypotonia (low muscle tone, usually a symptom of something, not a diagnosis), which was one of Garrett's symptoms from the beginning of his medical ordeal, I got frustrated and shared all his lab results....muscle biopsy, exam notes and labs, and several moms on the board messaged to me that he sounded like a Mitochondrial Disease case to them based on their kiddos with Mito. Then one of them shared the name of her child's specialist in Houston, Texas, Mary Kay Koenig. We got in to see her, and finally Garrett had a doctor on board who knew where to go from that point. After additional bloodwork and a second muscle biopsy, she had us come back and informed us we were dealing with Mito, likely a Mitochondrial DNA Depletion Syndrome. Genetic tests have yet to reveal the exact type, but I will share more on that in a few......

So when we lived in Louisiana, near Baton Rouge, we drove to Houston some for appointments and to see Dr. Koenig, and then before we moved, we started just flying there because Garrett has so much trouble traveling by car. So I would fly over with him, see the doctor, then fly home the same day or one day later. Then we moved to Idaho September last year. That also meant that we moved out of our insurance region AND we switched our insurance from Tricare Standard to Tricare Prime, saving money, but complicating things by needing approvals, authorizations, referrals that we had not needed on Standard. I called to see about seeing Dr. Koenig in Houston to continue care, and I was told I had to get letters from our pediatrician, Dr. Koenig, referral and then GOOD LUCK as we could be approved or NOT!! I wanted to CRY!!!! I knew we could afford to see Dr. Koenig, but it would cost at least $300 to see her, then whatever labs cost...then travel. There is a Mito specialist in Seattle, but that's far enough from us we would have to fly there, too, so it's really all the same. Plus, from my experience reading othr parents' experiences, many times changing Mito specialists can muddy water, tests often are repeated, etc., and at this point Garrett needs a BREAK, not more poking, prodding and testing!!!

While talking to Tricare about trying to get this appointment approved and covered, I learned that we might be able to get our TRAVEL covered as well....WHOA!!! I cannot tell you how much we have spent traveling to therapies, to Mayo Clinic with two kiddos in Minnesota, to Texas countless times....hotel rooms, air travel, gas, food, and NOW WE MIGHT BE REIMBURSED FOR SOMETHING?????!!!!! WHOA!!! I reveived an email with the packed to complete for the travel before the travel, and I had it all filled out, but the pediatrician's office seemed to be slow getting the referral sent in. Come to find out that they were waiting to get medical records from Dr. Koenig because Tricare said it would help to get those to Tricare to help our case. The pediatrician's office couldn't get the records because fax number was the wrong one, but no one called me or the office to get the right one. Finally, Thursday, after calling over and over and over for weeks, I finally asked the nurse to have the referral sent without records, and they did it and faxed it to me as I asked!! WOW!

So today I checked and learned that the referral went through......two of them, in fact. One mental health and other an evaluation. THEY APPROVED IT!!! WOW!!! Big prayer answered!! THEN I re-read the travel packet and noticed it seemed like I needed to get the travel stuff done before travel, but I had to have a referral number, and I had to wait on it so long. Grouchy faxed the travel documents today, and I felt like we would likely not get it there in time because the forms said DO NOT FAX OR EMAIL...MAIL ORIGINIAL ONLY! Uh-oh. I called this evening and they GOT IT and APPROVED IT!!!

Oh, and there's more. Garrett's G.I. tract is slowing WAAAAY down, and he has blood being tested now for Celiac Disease...again. Meanwhile, as we were working out this insurance and travel stuff, we were contacted to ask if we would allow Garrett to have a gastric emptying scan as part of a study being done on Mito kids and G.I. dysfunction. FREE!! AND we will sign paperwork in Houston which allows him into a genetic study looking at genes not previously studied in Mitochondrial Depletion Syndromes...FREE!! And this test may be the one leading to a name of the genetic problem causing his Mito!! ALL FREE!!

SO there you have it. Appointment will be covered at least 60% AND my travel and Garrett's travel, lodging, meals, rental car and fuel will be covered!! AND two studies may lead to great info and more answers! WAY COOL!!!

Now the best of it all is that my mom will meet us in Houston and fly back to Idaho with us and stay for six days!!! SO she will get to be with us when Garrett tries to ski and to go tubing and watch Addie and Ainslee ski!! HOW FUN!!!!!

Oh, and skiing did not work out today. The mountain is getting snow now, but none until this afternoon. We will try again next Friday with Grouchy and my mom!!!

Love and hugs to you and yours!! May we all notice and give thanks for all of our answered prayers.....and the things we forget to pray about but still get!!
Godspeed,
Clara-Leigh

Thursday, January 20, 2011

Praying For Snow!

Tomorrow is the big day!!! Garrett will put on snow skis for the first time....IF IT SNOWS on the mountian tonight!! It was so icy Tuesday, and we are scared to try to work with him without fresh powder. It is very hard to stop and to control yourself with only hard packed snow or ice. So tonight I will turn in early, praying for snow and praying my little guy has a blast!!
Our friend Ali is coming with us. Ali is the first person we used to babysit here in Idaho. We absolutely love her and her whole family. God broke that mold for sure!!!
I will also pray many, many, many prayers of thanksgiving tonight as I realize how blessed we are with the people God puts along our path. We are so blessed!!!!

On another note, Garrett's teacher, Mrs. Debbie, is making us think ahead about where Garrett belongs in his educational path next school year. He will be 6 this summer. He is currently in a special needs preschool, public. But next year he could go to the local elementary school and have another wonderful teacher with amazing aides in a 1-4 grade "day class." . I met the teacher and aides today and hung out in the classroom for an hour. What amazing professionals these women are!! We joked that after a day in that classroom, none of the women needed a gym membership.....geez, what a workout!!! The main teacher is the mother of a sweet boy in Garrett's current class, so we chatted about getting the boys together. While the class was perfectly wonderful, Garrett functions on the upper limits of that class, so we are wondering if maybe he could go to regular kindergarten with an aide to help him. Or go half day in the special class and the second half regular class. Or maybe, as the teacher recommended, he could go to the class I toured today but then leave a few times each day to join up with the regular classes. While I have no objection whatsoever to his being with other challenged kiddos, I know he does best when there are normally functioning children around him where he will be trying to keep up with them. More to ponder! He has a psych evaluation next week, and he should be able to receive Medicaid assistance to help with more behavioral and sensory therapies, we hope. Then around spring break he will have his three year IEP reevaluation.

Godspeed to each of you!!! Thank you for looking in on us. Life is good. Be blessed and count them all!!
Clara-Leigh

Sunday, January 16, 2011

My Kids Are Cute!

My kids are so cute!! This cute dude was just home from church when I took this one. I just can't keep my lips off his cheeks when he is dressed like this...or any other time for that matter!


And these girls......waaaaay cute!! I just bought some roller blades for them yesterday at a thrift store. They are loving them!


And these are two of the three most important mean on my earth!!!!! (Dad isn't here with us in Idaho right now because he is stuck in the snow in Alabama until spring!!)



Tonight my hunter-gatherer Grouchy brought home a duck!! No joke, he walked out of our back door, we heckled him with a duck call from the upstairs bonus room, then a couple hours later he came sloshing home through the mud after dark with a nice duck. Problem is that now I have to cook it....uuuuuuhhhhhhh.......

I know you likely have really cute kids, too, but I have to brag on mine. Send me your blog address and I will smile as I read your bragging about yours....I will!!!!!
Godspeed,
Clara-Leigh

Darkness Descends Upon Another Mito Family

I just learned that a today precious little girl named Piper lost her earthly battle with a mitochondrial disease called Leigh's disease. Please pray for her family tonight.
She was not two years old yet and was one of three triplet girls. Her parents have been so brave, and they knew the end was near. But I am certain no measure of "knowing" or suffering can take away any of the pain of losing this precious baby girl. Be in prayer for not only her parents but her two sisters will always miss her.

Godspeed Piper,
Clara-Leigh

Saturday, January 15, 2011

If I Feel Like This, How Does He Feel?

Today while I helped Garrett protect his Thomas the Train rubber ball while playing in the indoor spray park and pool at our local YMCA, I watched and pondered the goings-on in his head. So many times each day, the girls, Grouchy and I get frustrated with Garrett's behavior, loudness, tantrums and such. And the pool was no exception. He wanted to get in this water fountain that looks like a giant mushroom with rain falling off the top of it, but while he woudl say he wanted to get through the water, he would scream and get mad at it. He would throw his ball through the waterfall it created, and the ball would get trapped on the other side of the water. Countless children got it out for him to help him, and each time he screamed at them. It gets so irritating to each of us. Most of the time I can hold it together, but sometimes it gets the best of me. I get short with Garrett and then short with the rest of my family. By the end of the day, while I should be lovingly enjoying preparing the day's final hot meal for my family (or looking gourmet warming up leftovers ;) ), instead I am running on fumes, emotionally done and feeling bitter. It is unfortunate and unfair to say the least, but it happens. It feels endless. It feels like Groundhog Day many days. It feels like insanity......telling a child the same thing for 4 years, hoping for the appropriate response, behavior, comment......but it not working. He will say he wants to do something, then I will agree, then he will scream he DOES NOT want whatever he said. He tantrums in the car and it is random. Some days we make it a few miles and I start to think, "Wow, this is like a normal family with 3 kids over 5 years old in a car!" But I have now started to dismiss that thought when it creeps in because as soon as I think it, it changes and he screams, kicks the buttons on our GMC vehicles' consoles until the knobs start to short and cause the speakers to hum over the music, and loses any bit of control he might have. He throws down things and then wants them right back. It's so insane.

But you will note the above paragraph that I intended to be only a couple of sentences focuses on who??? Me.

But what about Garrett? My dear friend Ganetta counseled me about Ainslee's poop issues a few years ago. Ainslee was constantly soiling her panties, completely seeming to un-potty train. But Ganetta reminded me that, "No 4 year old WANTS to crap on themselves!!" And she was right. Ainslee did not WANT to be scolded, fussed-at, frowned upon. She had a problem with her tummy, and once it was solved the soiling stopped.
Same with Garrett. I have to keep focused on the child, not the behavior. As distracting as the behavior may be, I have to remember that my SON is in that body. My son has no disire to be so aggravating. He doesn't even understand the world enough to aggravate intentionally very well. It isn't his fault. No one wants to scream and kick and spit and repeat this painful pattern over and over and over and over.......

So I journal here tonight in serious reflection of the hundreds, literally hundreds of times that I have let him down, lost my temper, temporarily "checked-out" as his mom for a few minutes or days. It has been emotionally exhausting, but that is a stupid, senseless, selfish thought. Just think about how emotionally confised and exhausted he must always feel.

Tomorrow I will try even harder. And each day I will renew my spirit to be more considerate and understanding and patient.

God, thank you for my beautiful child. Help me to love him the way you love all of us. At the end of the day I have no excuses that are useful. You know my heart. Heal me and help me.

Godspeed,
Clara-Leigh

Friday, January 14, 2011

Successful Bowling....Almost!

Roads were icy here yesterday, so we missed both of the girls' gymnastics classes but needed to get out. We have a cool 8-lane bowling alley attached to a good restaurant here in our little town, and we headed 3 miles into town without sliding around on the roads any last night!! Yesterday morning when Grouchy tried to take the girls to their morning gymnastics class, they did a 180 degree spin turning onto a road just a mile from our house. They promptly, gently used the gas to take that as a sign to proceed HOME!!!

Garrett loves watching all of the movement at the bowling alley!!

Once Garrett gets on his knees and pushes the ball, the girls wait....and wait....and wait.....to see if his ball will make it to the pins!!

And then my sweet Ainslee had time to smile for me as we did a mini photo shoot!



Grouchy laughing hysterically,"Garrett, you really need to get off of the ball and roll it."






Addie is getting the hang of it! Although real bowling is much different than Wii bowling!! I will say we are all NOISY bowlers!!! Lots of ball-bouncing noises when we release the ball!!
Hope you have a ball today!
Godspeed,
Clara-Leigh

Thursday, January 13, 2011

Horses are usually pretty mundane to watch in captivity. Usually they eat, occasionally you will see them lying down, they sometimes will bump or kick at each other to get to food or just continue their pecking order. But mostly they graze and walk and, well, make me bored!!

Yesterday was a totally differert story! Grouchy called out to the girls and me to look outside in our front pasture yesterday during school, and we saw that Ernie and Lucy were having quite a time!!! They were running around some, but mostly they were picking on each other biting, hopping around, spinning, and even rearing up at each other. It was all in friendly fun....and maybe a little to do with mother nature and heat cycle as one is a mare. The other is a gelding, so not able to "do the deed" like a stallion, but her cycle can affect him.

Here are some fun photos that resulted in my blowing off spelling and freezing my fingers off taking photos!!!!
Oh, and the first one is really suppose to be the last. They were BOTH yawning and tired when it was all over!!
God Speed and Happy Trails!!
Clara-Leigh
















Monday, January 10, 2011

Ski Bunnies

We enjoyed skiing with our little girls today. We have not been skiing in a few weeks, but everyone jumped right back onto the skis and flew down some fun hills today. Garrett went back to school and my friend Andrea met the bus and took him to her house for the afternoon. He entertained her family by talking about PEANUTS all day but pronouncing it PENIS!!!

I am attaching a video of Addie and Ainslee and Grouchy skiing today. I had no idea the girls could ski so fast and so well already!!!!! I was all grins, and no one got hurt. It never got above 16 degrees, so we did have to go into the lodge and warm up a few times.......and eat nachos.....and drink hot cocoa.....and eat gummy worms.......

Grouchy got to tickled watching Ainslee ski. Says he kept thinking "Ooompa, Loompa...." from Charlie and the Chocolate Factory watching her all bundled up flying down the hill!!!! Enjoy this quick video!!

Godspeed,
Clara-Leigh


video

Saturday, January 8, 2011

Flashing Blue Lights in the Rearview Mirror

Thursday's travel day home from Louisiana to Idaho was long. Our flight did not leave New Orleans until an hour after the original 6 pm time. We had a very tight turn to switch planes in Denver, but since Southwest Airlines does not fly around the clock, they have the ability to hold flights if they are the last ones in the day, and they did just that for us and for a few other passengers trying to come to Boise. Garrett was loud but fun on the first flight, between flights Grouchy carried him like a sack of potatoes as we sprinted to our next flight, but on the second, he fell asleep and woke very angry. We made it almost home when we saw the flashing blue lights in our rearview mirror. Uh oh!!! Yep, 45 mph in a 35 mph zone in our town of 2,500 at 1:00 in the morning with expired out of state license plates, so expired registration and to top that, an expired proof of insurance!!! OH NOOOOOO!!!!!!! Let's just say Grouchy was not a happy camper. The temperature was about 25, and maybe that had something to do with it, but the very nice policeman gave us a verbal warning and sent us on our way....WHAAAAT????
WOW WOW WOW, thank you GOD!!!!!! Yes, yesterday after only abour 5 hours of restless sleep after our travel home, I went to the DMV, got my Yukon registered in Idaho, Idaho plates AND printed off my most current proof of insurance.

We are settled in pretty well after a day of unpacking. Today I attended the local 4H leader training, and then Grouchy and I took the girls to Oregon (state line is 2-3 miles away) to a farm about 45 minutes from our home to look at some horses for sale. We didn't find anything we were too interested in, but it was a beautiful drive and we met a neat family. There was still a good amount of snow on the ground there, so it was a pretty sunset drive on the way home.
Garrett enjoyed staying with Ali's sister, Kali. She is also a super-sweet girl!! We are so blessed to have such wonderful, Christian neighbors, and this generous family who helps us so much with our little boy!!!

Tomorrow is church and then 4H Horse Bowl contest practice. Monday we send Garrett back to school, get up early with him to get the girls' lessons done and then head to the ski slopes!! We are excited to return to the skiing. We just love it!!!

Super hugs to our family back in the Southeast. We had such fun visiting and we miss you all terribly!!!!

Godspeed,
CL

Wednesday, January 5, 2011

WHAT???????

Last night Grouchy helped Addie and Ainslee get their Christmas thank you notes written. He coached and they wrote and drew. Tonight is our last night before returning to our new home in Idaho, so Grouchy's mom invited his sisters and their families to come here to their farm for a farewell fried catfish dinner. YUM. Have I mentioned I gained 4-5 pounds in three weeks here???
As the cousins and aunts and uncles left, my girls handed the notes out.
One of Grouchy's sisters had a particularly emotional goodbye, and Grouchy shared the sentiment. It's hard!!! So she text messaged me later after she arrived home. She said she cried all the way home, then opened Ainslee's note, read it and cried again, but this time from LAUGHING!!! Enjoy the photo she sent to me so we could laugh too. When Grouchy saw it he snorted chocolate soy milk out of his nose. Now our nephew wants to see a video of THAT!!!
Enjoy!!!




Monday, January 3, 2011

Louisiana Sights











Here are some photos from Grouchy's parents' farm in south Louisiana. I think this is a very, very beautiful place. Actually, I have a weakness for farms and tend to think any farm is FABULOUS, but this one is extra special!!! Here are photos taken in the past year. I left my nice, new camera in Idaho because I could not imagine trying to keep it safe while traveling with the kiddos.








Sunday, January 2, 2011

Attitude Adjustment

Attitude in relation to an aircraft has to do with the angle of the horizontal alignment of the aircraft in relation to the horizon....or more simply put, how much the nose of the plane in tilted up or down during flight. Wrong attitude, especially when landing, can cause, well, a crash. Wrong attitude when flying can cause a stall and then......a crash. No matter how you look at it, attitude is important, and a bad attitude can quickly lead to a major mishap.

We have had some very wonderful experiences and moments while visiting Louisiana. For those of you new to our blog, we lived in Louisiana near Grouchy's (my husband of 13 years) parents and family for 9 years before moving to Idaho in September 2010. We have been here almost three weeks staying with his parents in their very comfortable, spacious home. There have been cousin and friend sleepovers, a very special Christmas together, shopping trips, hunting and lots and lots of playing!! The weather has been pretty great, too! And of course Grouchy's mom, DiDi, can cook like no one's business and likes to do our laundry.....I know, I am still spoiled beyond measure!!!! Oh, and great, bittersweet news is that we did sell our Louisiana house last week!!!

However, we have experienced some very, very low times here. Not because we are here, necessarily, but just because we ARE. I think our attitude got misaligned, and we have been flying along very uncomfortably and finally rached a critical point of danger. Some of my blogs over the past weeks have shared some of these times. But tonight I want to share the attitude adjustment and some good things about our recent lows.

We are Christians, Methodists to be exact, and we do our earthly best to turn to God when things are good, bad and neither. But sometimes that doesn't happen. Sometimes we ask for things and we do not get them or do not get them as we seem to think we should. Many times I am not thankful. Many times I am a spoiled four year old stomping my foot and demanding what I WANT!!!! This past year has been about transition: Grouchy's 20 year fighter pilot military retirement, our move, new job, and the kids growing and changing. Somehow change is a very hard thing for me. I love to initiate change, plan change, even move through the change, but when change happens that I did not start or know about, I get my attitude out of alignment. I lose the big picture and try to control way too much.

Ahhhhhh, and there's the word of the day. You have to control your attitude!!! Sometimes for me it feels like I am not adjusting my plane's attitude, but that the horizon shifts beneath me. That's when I have to get on my knees, offer my fears and frustrations of the known and unknown to God and then TRUST that I don't have to adjust my plane's attitude at that point because God will......if I let Him. (Oh, and I need to communicate with my husband too....small point I neglected to mention.) These past weeks I have not let God. I have put it on myself to need to affect change to make everyone else happy even if it kills me. Not healthy!!

Grouchy and I have both found ourselves guilty of trying to shield the other from frustrations with Garrett. We have both been working to protect the other from overload of being "stuck" with Garret while the other does things with the girls or family. One stays behind and "takes it on the chin and misses out" while the other gets to escape reality and be a normal family. But note the sentiment of things like "stuck, escape, missing out." Not good. Garrett is a beautiful, healthy (for now, visibly, physically), funny, precious child. But he has so many -isms that make him frustrated, complicated and restricted. Most of these things come from inside his little mind, and talking more to our new G.I. expert and Grouchy's friend with Mito, much of his frustration is likely coming from his tummy discomfort. Wow, he has to be miserable, and he lets us know sometimes. And then the rest s due to his developmental delays caused by mitochondrial disease.

Grouchy has helped me correct the attitude of my aircraft by saying that we need a plan. Yes, it may change or have to be adjusted repeatedly, but we need a plan. Shoot, it may not even work, but we need it!! We an always make a new one! We need to plan for 1-2 days per week where we leave Garrett with a sitter and go do things as a family without him. That thought has broken my heart so much in the past as I felt that meant we were leaving him out. But truth is that he doesn't enjoy many of the things we do with the girls, especially the ones involving long car rides, waiting in lines, sitting in restaurants, skiing, so he will be happier with one of his sitters than with us, truly. We have to get things rolling for behavioral therapies, Medicaid and help with respite care funding and diapers. Yes, we have a 5.5 year old child in diapers with no end of diapers in sight. We use sitters with him more than we had to with the girls when we were not opening restaurants years ago. We have extraordinary expenses and we need to seek ways to get assistance and budget and save for these expenses in the future. We need to plan these days without Garrett on our calendar and look forward to adventures with Addie and Ainslee without feeling down about not bringing Garrett. Who knows? Someday maybe our idea of "family togetherness" will happen for us. It just isn't now.

Grouchy is my rock. When my rock is rolled, it isn't good. He and I spent about 48 hours in the dumps with a really screwed up attitude last week. We felt the weight of our family's restrictions and quirks crash on us as we watched the normal kids and families around us come and go quite freely and without major struggle. And while I love them all and would never wish my emotions or situation with Garrett's frustrations on anyone, I found myself feeling resentful that they could just "take their happy little families right on home and live normally, happily ever after," yet we were feeling so stinking stuck in a rut!!! They could walk away, escape, drive home, and we could not escape ourselves. That was the lowest low I have ever had, when we both hit the attitude problem. And then things cleared up some. Grouchy's college friend came into town, driving over 8 hours to spend a few hours with us. He was encouraged by what he saw. We attended church and heard from a pastor here whom we have grown, quite quickly, to love and "get it" from. And that was huge to hear his words spill God into our wounds. But most of all, we talked, I cried, and we fell into each other, and we have allowed God to take the controls again and adjust the attitude.

Thank God our life isn't a plane with me in control. I think things are off sometimes now, I cannot imagine how I would have fouled things up on my own. Grouchy is my best friend God is in the pilot seat, and right this moment, I can see some better flying ahead!!!

Keep your attitude right and Godspeed!!!

Saturday, January 1, 2011

Announcing New Walk-On!!!

We have a new walk-on who joined our team!!! An old, dear friend just reconnected with us in a really interesting chance meeting with a relative, and we learned he has mitochondrial disease. His mother and grandmother had it as well. Not only does he have it, but he is so stinkin' brilliant that he is better versed in the disease than anyone I have ever talked to or read. He spent numerous hours on the road today just to come out to Grouchy's parents' farm and meet Garrett and talk to us more about him. We had previously been emailing and answering questions, but tonight we finally got to ask more and discuss more face to face. He was so kind to us all and Garrett LOVED him....must sense the connection!!! He had so many great ideas, poured over more lab info and will work some of it in his mind and online more to help us piece things together. He wants to be Garrett's motivator, to show him that Mito doesn't have to limit him. I pray this can happen. This man is amazingly smart and successful and wants to be here for our little dude...WOW!!!! I asked him if he would like to meet us in Houston later this month for our appointment with Dr. K. He seemed interested. How wonderful it would be to have a friend with us who understood everything and could help us understand more and ask more questions.

Here's to a new member of our team and a good feeling about what he thinks Garrett's future holds. We needed that!!! And thank you to each of you who are on our team now entering this new year. Blessings to all.

Godspeed,
CL