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