Tuesday, February 26, 2013

Garrett's spine MRI showed:


Ainslee comforts Garrett in recovery after his MRI. Garrett has the best sisters in the world!!!
So you may assume that is great news, and I guess in the big picture, it is good news. Great, another set of weird things going on and no physical/test evidence to explain it. Except.......the G.I. specialist called with MRI results this morning and says she believes it is as articles I have shared with her. His nerves in the colon are not properly working. Wouldn't be a big surprise since the nerves in his cochlea of his ears are already trashed. So we are right back at the beginning but were hoping for an answer. But we cannot get an answer on the genetic cause of the Mito, the brain MRIs look normal, so there's no visual reason for his delays and mental issues, and now the tummy. Nothing obvious to see on a scan. We can only guess, once again, but then again, that's lots of trademark Mito cases for ya!!!!

As I type, he is playing the Wii and I hear him filling up a pull-up. This will be the first of 7-9 of these blowouts for today since he didn't poop in the past 48 hours. Laxatives do nothing anymore, but we have been instructed to give them anyway if he goes two days without poop. So we will try that. We have added more soluble fiber and made his Miralax dose earlier in the day, at noon instead of after school. The urologist wants him drinking more at school, so he has a certain volume of daily liquid intake we shoot for, hoping to get 2/3 of that in him before lunch. When he has a bowel movement, he is always standing or lying down, but never sitting or on the toilet. His G.I. specialist calls what he has coloporesis, or stopped/delayed movement of the  colon. Garrett has "sandy poop" frequently, where it takes over a dozen baby wipes to scrape the sand off of his bum after the poop is gone. This is because he has so much that sits in his colon that it allows sediment to settle,  and when conditions are just right, the huge pressure of the weight of all the poop above the last two turns of the colon will force the sediment out also. It is crazy! 

What was most helpful is to rule out problems on the spine MRI. It was thought he could have a tethered spinal cord. Nope. So where do we go from here? Nowhere! That's not entirely true. The G.I. specialist said to lay off all attempts to toilet train for bowel movements and come see her in three months. Maybe at some point, she says, he will take a mental turn and want to try on the toilet on his own. We had him in poop therapy, and he learned to gain strong control over his pelvic floor and pushing, but that never yielded results. So now we wait, but it is good because we also relax some. We were in limbo rather to continue potty training-type exercises at home and in therapy for poop, but no more!!! So he is off the hook for now!! And it is truly a relief for me!!! It's one thing to train a child to do something they are capable of doing. It is entirely WRONG to be training a child and pushing them to do things of which they are not even capable. And he may never be capable in this area. I know God is taking care of my little boy through the amazing medical team Garrett has between Boise and Seattle!!!


Thursday, February 14, 2013

Happy Valentine's Day From Dr. Urology!

Today was Garrett's first urology appointment, ever. His G.I. specialist has an MRI scheduled for February 21 under sedation and wanted Garrett to see urology before then in case the urologist wanted any testing done while Garrett takes his "long nap." The appointment was uneventful, not!!!!

First, Garrett walked into a pretty large exam room with lots of medical equipment and a strange-looking potty made of PVC pipe with a sort of funnel into a bucket deal beneath it. Garrett was instructed to pee in the toilet once the nurse began timing him. Hhhmmm. He was a little anxious about this new-design toilet, but he soon emptied in style! Next was the office ultrasound. He freaked. I mean really freaked. He was making terrible sounds, trembling, frothing at the mouth, and producing quart-size tears. It was sad. Then it was frustrating. Finally, it was maddening. He has had this same thing done to his chest annually since he had a heart issue that was fixed with a heart cath. I finally had to man-handle him onto my lap and lay on my back and eventually get him onto his back on top of me. Once the tech started the procedure, it was no big deal. In fact, Garrett asked if he could do it again!!! Well then he DID have to do it again, in the lower floor of the building we were in with a better machine. We had to waste three hours before then, so we went to Chick-fil-a and "Christmas Kreme" Donuts. We ran a few errands, then went back to the hospital for ultrasound #2. He freaked AGAIN!!! But this time, Sammy, his service dog, was in the room with us, and he "showed Sammy how to lay on the table." Whew, never thought a dog could be that helpful!!!

The urologist said Garrett has no blood or protein in his urine. He has had both in the past. We talked lots about his nighttime wetting. She was going after all these ideas to work on it, and honestly, I am just not that concerned!! I have figured that based on his developmental delays and other issues, he may just take years to stay dry at night. She wants his Miralax dosed at noon instead of after school. She wants him to consume a total of 6 cups of liquid per day, with half before noon, then another 25% after noon, but no liquids 2 hours prior to bedtime. These are huge changes, seriously.  We will do our best!! Urology will contact us about the more in-depth ultrasound probably tomorrow to let us know if they want to add-on tests during the MRI.

All-in-all, it was a good day. We left Meridian to go back to the developmental agency RaeAnn works through for their Valentine's party. By then, Garrett was pooped. He had a very slight temp today and was a bit congested all day. His fuse was pretty short overall, so I was glad RaeAnn brought him home for an early bedtime while Oscar and I enjoyed our church's Valentine Dinner. Addie helped babysit at church, and Ainslee chilled at home with Garrett and RaeAnn.

Life here has been very busy, thus the infrequent updates here. I am speaking at our church's womens retreat in a couple of weeks, so many nights have been spent writing, digging in the Word, and meeting with the AMAZING Christian sisters who have carried me through this retreat-prep process. Last night was especially cool getting to play guitar and sing with a lovely lady who will be in charge of the retreat music. I am so excited about this year's message!!!!

Addie and Ainslee stay very busy with dance and gymnastics. Addie is prepping for dance company performances and competitions while Ainslee is working out more at the gym and at her first meet of the season and first REAL gym meet in her competitive team career, qualified for the Idaho state gym meet!! Yikes, it's all so exciting!!

We have worked with the principal of the local elementary school to start a reading program called SIT, Stay, Read. We take one of our dogs in each Monday for an hour, and four different first graders who need some extra support in reading get to read to one of our dogs!! The first week, Sammy went, and then this week Eli, Addie's Pug, went. The children are responding beautifully!!! In fact, we have been asked to bring two dogs next time so we can handle 8 readers!! I am so excited, and Addie and Ainslee are enjoying helping other kiddos, too!!!

Blessings to each of you and your Valentines!!