Saturday, March 24, 2012

MIA For a While!


Wow, women's retreat was a blast and we have just been plain busy!!!! I have been on evil Pinterest, and have spent too much time there and have not been very faithful here! I am back.
I have been so overwhelmed with the kindness of the ladies who attended the Deer Flat Women's Retreat!!! I honestly cannot wait a whole year to spend time with those amazing ladies for another couple of days!

Garrett's spring break began Thursday and continues through all of next week. The girls each have two days of 4-5 hour 4-H day camps next week with themes such as mosaic art, detective work and sewing. They are excited!

The weather here is perfectly perfect! Highs in the low 60s and everything is popping up green, including the weeds! Today was a great day for the girls as they each had a friend over or with them for the entire day!! Well, except sweet Addie who waited in the truck for me while I plowed a field for a couple of hours. She said she could be proficient at dialing 911 or driving my Yukon somewhere for help should I somehow get in a jam! I didn't, but I did have fun on Grouchy's tractor complete with A/C and a good radio! There is just something about working the land. Now don't tell my house plants this as I kill them quickly!! So Addie started her play date around noon instead. Thanks Addie!!

Garrett has started a new thing, and it is so exciting. Thanks to RaeAnn, his personal care worker, he is now going to do #1 on the potty with no prompting!! There are vast quantities of M &M's being handed out after the fact, but he is going on his own!!!!!! He still is pooping in a diaper or his unders, but that will just take longer, I guess. He has not had any trouble adjusting to the pretty high doses of Vitamins E and D that Dr. S in Seattle started on him a few weeks ago, so I am thankful. Garrett is enjoying pirating the remote controls and surfing the television while I am outside. Boy will that have to change with Grouchy gets home!!!

Well that's a pretty quick rundown of the goings-on here. Oh, we are getting more inquiries about people staying in our bunkhouse bed and breakfast, so that's really neat. And We are on the last several weeks of our homeschool year, so that's a huge deal too!! Last, we are on the almost 2 month countdown to my parents moving into the bunkhouse for the summer, and we are all getting pretty excited about that!! Lots of plans and lots of fun times ahead!!!

Please keep our Mito friends who are impatient in your prayers tonight. This disease is so cruel, and these kiddos are so helpless and innocent.


Thursday, March 8, 2012

So THAT Explains It

Remember I said that Garrett was really great during our trip to Seattle until the drive home from the airport? Well, I did say that, I think. Yes, I did.
Well, today while at the pediatrician's office for Garrett to have his physical for MDA summer camp here in Idaho, YAY, his first year, lots of commas, she noticed he has two infected ears!! Oh my, doesn't that explain so much!!! So he started an antibiotic tonight that should knock it out. On top of that, he had to get a pneumonia shot and was none to happy about that but reminded me he loved me all the while!!

Signing off for a few days as I head into the mountains to speak at our church's women's retreat. I am so excited!!!!!!!!


Wednesday, March 7, 2012

Home Again!

We made it home safely just after lunch today. Garrett was a champ right up until the 55 minute ride home from the airport. I really do not know why! I have so much to write tonight, so many thoughts to let flow, but I just put Garrett to bed and Grouchy is out with the girls for AWANA and dance for them and a workout at the YMCA for him. It is peaceful, quiet, and strangely lonely, but not for much longer because I have to get hopping finalizing a few session I have the honor of presenting at our church's women's retreat his weekend. Time to focus! I will drop a few teasers here on some great stories and funnies that happened during my trip to Seattle with Garrett. Here are just a few possible future blog titles that resulted: "How old are you?" Garrett asked everyone on the plane. After getting a pair of Alaska Airlines wings he exclaims to the whole plane from the front of the cabin, "I'm gonna drive this plane!" Holding out his new play cell phone to a really cute college gal in the KAVU store,"Can I have your phone number?" And yes, Grouchy, she gave it to him!! To the attractive lady sitting right behind him on the flight home he asks,"Do you love me?" How to make three gorgeous college gals do the chicken dance in Enterprise rental car office in front of 20 other Garrett What to do when you think you overhear nurse outside recovery room say to another nurse that your child has a brain wasn't my child thank goodness, but I aged about 98 years in 5 minutes! The experience of watching Garrett put to sleep in my arms and the emotions that followed laying his precious body gently on the cold MRI table, pulling the curtain and walking away. Punched me in the gut when I least expected. The overall kindness of folks in the pacific traveling experiences of ALL TIME!!! And finally, debrief on how to keep the streaking monkey from eating bananas out of the hotel garbage can when he is under STRICT NPO ORDERS! Love and prayers to my special Mito mom friends Debbie and Heidi who so graciously spending most of other day with us at the hospital helping me with Garrett!! You ladies are amazing!! Looking forward to sharing some of my fun Garrett adventures like how we ride the elevator in our house each night after we brush our teeth and why we cannot go back to McDonalds and give the toy back because we didn't ask for the toy....... Godspeed, Clara-Leigh

Tuesday, March 6, 2012

In Seattle........Longer

We flew to Seattle Sunday evening and rented a car to get tour hotel in the university area near Seattle Children's Hospital. we had a pretty good night's sleep and struck out for Krispy Kreme donuts Monday morning since when we landed, Garrett said, "Mom, I think we should go to a restaurant and sit down and eat donuts together!" as soon s we landed Sunday! How cute is that? So we got donuts and headed to see Dr. Saneto. for our first time. I met him last June in Chicago at the Mito Symposium and then decided to consider changing Garrett care to him from Dr. Koenig Who we LOVE but was all the way in Houston. Dr. Sane to was absolutely wonderful yesterday in all respects....from answering my ten million questions to creative fielding the nine million. no human can anwer for us, to how he handled Garrett. He spent lots of time with us and was so patient. Lucky and blessed me had two friends from the online Mito world meet us in the waiting area and then keep Garrett once the exam was over so I could talk to Dr. Ssaneto in peace. Here are the high points of the appointment: He added Vitamin E to mito cocktail daily. He made Ribolflavin be all at night instead of morning and night to reduce the way med make Garrett stink. He ordered a coupe more blood tests to be drawn while Garrett is under anesthesia today for his MRM. Will look for lactic acid peaks in Garrett's brain during MRI/MRS today and is peaks seen, will ass another thing to the mito cocktail. Recommended we cntinue therapies and the game is to make the mitochondrial last as long as we can, and exercise is shown to help with that. wants to see us back in 6 to 12 months unless things worsen. He said not to keepGarrett in a buble to protect him from illnesses and was glad to see Garrett doesn' t get ill often but warned even with him seeming very well, any illnesses should be taken seriousy because any ne can knock him down into a dangerous state even though he seems so darn healthy.....baffling. He wants us to proceed with the gene testing....we have the blood draw kit at home...because Garrett would be possibly eligible for starting trial miracle mito drug if his disease gene is found and the study opens up fr om an end of life tidy to all patients with identified genes. THAT woud be HUGE as then the not yet approved miracle med would be started before approved and free!!!!! HUGE He said most recent studies have shown patients like Garrett living pat age three have a shot of making it into third decade of life, though quality of life may not be great. He also reassured me that if a person has to have Mito, now is a good time to have t as medicine is advancing rapidly!! WHEW! And i kow i am leaving things out but will have to log more later. I didn't think I would hace time to blog, but Garrett made it possible. You see, he was scheduled for a sedated MRI this morning with us checking in at 7:45, but phe snuck a banana OUT OF OUR HOTEL ROOM GARBAGE CAN and took a bite,p thus scrapping the MRI and causing us to have to change it to this afternoon, change our flight back home frump this afternoon to tomorrow, extend the room and the rental car.....and of course now to keep him NPO until after the 1:45 MRI, which is just a hopeful thing for now since they are having to seriously squeeze us in now!! So he is begging to eat, hasn't had any of his much-needed mess, and he is a mess of a hyper autism right now.......most certainly a football bat right now!! Sorry for thetypos but I am using Addie's iPad and do not have time to sit here and edit as Garrett is now naked and threatening to streak down the hall. Better strap him into the rental car and cruise for a couple hours!!! Too rainy to find a park yet....No, looks like Mr. Sun is out so let's go find a park! Please be in nprayer for the mito kids who are onto a healthy and active a our Garrett. This disease ravages so many lives and cheats soooooo many families.p If you would like to buy any of our awareness bracelets, p,lease comment below! We have raised over $1800 with the sale of these!!! Proceeds are going to the umdo or Mito Actin. Tthmk you!!,!

Saturday, March 3, 2012

Gonna Hold 'Em Up In Seattle!!!

Garrett and cousin Colton (5)

Tomorrow is the big day! Or it's another big day.......  Last night Ainslee and I piled into the Yukon (aka Land Yacht) with our friend and 4-H leader, Tass,  to drive two hours up into the mountains, the beautiful, elk-grazing, snowy, peaceful mountains, and spent the night in "Uncle Billy Bob's Redneck Vacation Trailer." And the name TRULY describes the place well! It was a very old, completely renovated and HILARIOUSLY decorated small single-wide trailer. It had pink flamingos outside with a Christmas tree completely decorated with lights, red Solo cups and beer cans. Inside was yet another Christmas tree decorated with cigarette packages, more beer cans and garland made of MARSHMALLOWS AND PORK RINDS!!! No lie!!!! It was adorably trashy but very comfy! Before bedtime we went to a country club up there and swam in a hot spring pool for a couple hours. HEAVENLY!!! At one point I got the nutty idea to say,"Hey Ainslee, if you will get out of the water and go lay down in the snow for a quick second before getting back in, I will too.....and WE DID!!! It was so fun!! We adore Tass, and we had fun splashing and talking and just enjoying the beautiful night with snow and HOT WATER!!! We spent the night there with Tass and another family of four. We stayed up until too far past midnight playing word games and then playing guitars and singing worship and country songs until my fingers about bled!! Still recovering. This morning was our district 4-H horse bowl, and both our junior and senior teams did well!!! We are so proud of these kids for studying and working and then being so brave in the contest!!! We ended the time in the mountains with another trip to the country club where a large hill on the golf course is a sledding hill this time of year. Needless, to say, there were laughs, crashes and snowball fights. A fun time was had by all. Ended the day with a beautiful drive through another part of Idaho I have not seen. It was breathtaking. I never take God's landscape for granted here!!!!

Now the fun of the trip to Billy Bob's Redneck Trailer is over and horse bowl is complete, the next leg of this half-marathon starts tomorrow! I am OH SO PROUD to share that Addie is singing with two other girlfriends in the contemporary worship service at 11 with the adult BAND!!! I am so excited for her!!! Our new pastor begins his time with us tomorrow, and the service is a special one, so lots of cool things are happening! Then after worship, Garrett and I head to Seattle for our little get-away. We fly Boise to Seattle, then have an appointment with Dr. Saneto (Mitochondrial Disease specialist) Monday morning, then a sedated MRI Tuesday morning before flying back to Boise that same evening. Garrett knows we are going and likes the airplane part but isn't so keen on the doctor part, so I don't dare mention sedation and all on Tuesday!! I hope we can get there and have some fun!! His little rolling Thomas the Train backpack is packed and he will be so stinking cute pulling it all over the place. Two sweet moms from our Mito world are planning to meet me and help with Garrett. I should be just fine with him and no help, but the thoughtfulness these two friends share is absolutely amazing. I am blessed!!!! I have learned, finally, that when the exam portion of an appointment is over, I have the authority and right to tell the doctor we have to either start walking while we talk OR go to a place appropriate for Garrett to find something entertaining so I can focus on the info the doctor would like to share. That helps!! Also hoping to hit a children's museum and ride the elevator to the top of the Space Needle. Garrett LOVES elevators, and trains, and drums, and buses....

So I am unpacked from 4-H and now repacked for Seattle. Uh-oh, now I am remembering all the things I have forgotten to Garrett's umpteen meds. Better get going!!!


Friday, March 2, 2012

Love Like a Dog

Love Like a Dog


Meet Ginger. She is a Red Heeler (as the vet says, a "glorified dingo") dog about 7 years old. Before this post can mean what I would like it to, I have to give you some background on Ginger's arrival into our family, and that starts back last summer when we said goodbye to our beloved yellow lab, Remi, who Aunt Elizabeth helped end up in our hearts and home in Louisiana. He was hit by a truck on an irrigation canal road. We still had Addie's small dog, Camper, who she had adopted from the animal shelter in Alabama where my mom worked. We were missing a large dog, a truck-riding, farm buddy. So one day while I was browsing a little antique furniture store in our little town, I was loving on the owner's rescued dog, Baby, and she asked me if were looking for another dog. I said that we were. She told me that there was a Red Heeler staying with a lady in an apartment across the street from her shop, and that the lady, marginally homeless and pretty disabled, was moving out of state and was only doing a short-term foster for the dog. So Addie, Ainslee and I headed across the street to this apartment. And I do not mean a posh apartment in a mixed-development community. I mean a ground level apartment beside a bar and movie rental store and under another story of the pretty run-down looking building. We knocked and a nice lady with a terrible limp greeted us. She explained that Ginger had been a stray, and a man she knew said to the people who found her that he would gladly take her in if her owner was not found. So he took her after several days. Then not too long after that, the man who took her had to go to jail for 28 months for repeated DUI offenses. When the police came to his apartment to take him to jail, Ginger was left behind in his apartment. A few days after the arrest, neighbors heard a whining coming from his apartment but had no idea Ginger was still there. They essentially broke into the man's apartment, thus freeing sweet Ginger, who had not done anything destructive over three days with no person, no food and no water. So the lady in the apartment with the limp took her in but had to move in about a week. We offered to take her, but she thought the DUI man wanted her back after his time was served, but I told her that if she was abandoned like that and our family (MY KIDS AND THEIR HUGE HEARTS) took her in, there would be no going back as she deserved better than that! She told us she would call the DUI guy's sister and find out if that was okay, and when we pulled back into our driveway, she called to tell me we could have her. So I turned around and went right back, and she has been with us since.....July, I think. It was during one of the two fair weeks for our family. My parents were here helping with Garrett, Grouchy was out of town, and I was gone for all the daylight hours for the next week with Addie and Ainslee at the fair, so it went like this: "Mom and Dad, here is the new dog. I know nothing but that she is sweet and appears to be in great health. I will be leaving for the week, so would you guys please care for this new dog on top of caring for the three cats, Addie's dog, five horses and two cows. Great, thanks!!"

Ginger, previously 'Skip,' is an absolute sweetheart!!! Grouchy claims she spends 23 hours a day under our bed, but I contest that she might spend about 3 of those on HIS side ON our bed when we are away....but don't tell him I said that!!! Otherwise, she is my shadow. Follows me everywhere!!!! Bathroom, bedroom, chores, feeding animals, going for walks or jogs, to the kitchen, the bathroom, the barn, the get the picture. As I type, she is lying by my feet, watching my every move so she doesn't get left behind somehow! She never really makes any noise, and even when Grouchy harasses her and uses his "BAD DOG low voice" on her, she just slinks over to him and rolls onto her back. Her FAVORITE thing is to have a human pet her, but don't dare quit as she will nudge her cold nose under your hand, arm, leg, elbow, to get you to start again! And we seriously think she would climb into my body if she possibly could! She just wants to be that close!!!

So it got me thinking how unconditional this love it. And I have heard people say DOG is the word GOD spelled backwards because God made them such special creatures, but I am seeing such amazing love and sweetness from this little Dingo!!! Just when I think I am going to get disappointed, God is there nudging me with people, scripture, other's words, or just amazing moments or occurrences. He is ALWAYS here, never wanting to be away from me. And like Ginger would LIKE to be, God does live inside of me......within each of us. He never leaves us, even when we shoo Him away and take him for granted. Even when we use our shaking fist to communicate with God, he comes to us peaceful, not angry or enraged as He well-deserves to be. He is under our bed, nudging to be given attention throughout our day, and yes, in the home of the DUI driver, soon-to-be homeless lady leaving town after finding a home for a sweet dog, and in each moment of our lives ever day.

So God is much like DOG, of course not literally, but in all of the endearing, kind, loving, unconditional ways we need Him. And if a DOG bites you, maybe reconsider it might be a divine message!!!!!

Godspeed and Bow Wow!!!