Saturday, December 22, 2012

How To Hug

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

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

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

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

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


Tuesday, December 18, 2012

Emotional Shopping

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

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

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

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

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

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

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

Just my ponderings for the night!!


Monday, December 17, 2012

Happy 12th, Addie!


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

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

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

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

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

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


Thursday, December 13, 2012

PT Wants Orthopaedics Referral AND Audiology Not Great News

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

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

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

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

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


Seattle Doc Visit and First Flight With Service Dog

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

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

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

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

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

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

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


Tuesday, December 11, 2012

Having Garrett = Saving Money and Freebies!

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

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

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

Merry Christmas!!!

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

Saturday, December 8, 2012

24 Hour EEG Results


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

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

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

When we got into the house, we tried to just function as a normal family for a while, and it was even easier than usual to have a peaceful evening since Addie was slumbering the say away in the guest house after an all-nighter with the Deer Flat Youth Group and Ainslee was at a Christmas brunch with one of her good friends. But Garrett was off the chart, meds were on board that should have helped, but NOTHING was rewards, threats, bribes, calmness, or anything. So I made the executive decision to put him in bed for a nap.  I put an electric blanket on his bed and Sammy (his dog) and I curled up in his bed with him under a super-soft blanket and the electric blanket. We all crashed hard for two hours!!

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

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