Thursday, November 29, 2012

Garrett's Letter to Santa

We have had to get super-creative with Mr. Garrett when it comes to his developmental therapist and me working on his handwriting, so it has come to letter writing. He loves getting letters suddenly, so we decided to go from "homework" to "writing letter to people" so he can get more mail!!! So tonight his developmental therapist, AND ANGEL, RaeAnn, heard Macy's is doing a Make-A-Wish fundraiser. It works like this: Each letter to Santa that kiddos drop off at Macy's generates a dollar Macy's will give to Make-A-Wish!!!! So the girls wrote theirs, and RaeAnn asked Garrett what he wanted to say in his. He told her, so she wrote it word for word on a piece of lined paper to let him copy. And here is GARRETT's first-ever letter to Santa. I am so excited and so proud. It took some encouraging as he didn't want to do it at first, second.....or 56th, but he did it!!!


My boy amazes me sometimes! Off Garrett and RaeAnn went to Macy's to HAND DELIVER the letter TONIGHT, then go to his favorite indoor playground and McDonalds. It feels so much like Christmas around here!!!

Godspeed,
CL

Two Little GirlsTurning Great Big Sisters

GREAT BIG SISTERS!!!

That's what Addie and Ainslee have become. They are almost 12 and 10, and they have dealt with more insanity, exhaustion, hectic shuffle and noise than most kiddos. They have endured literally hundreds of waiting room waits for therapy, appointments and surgeries for their brother. Yes, they have gone over 2 years without seeing a dentist because we couldn't fit it in. They have had to sneak things into the car, sit together in another row from their brother, thus far from Mom and Dad, and often not been able to speak in the car due to Garrett's terrible car riding issues. They have had more things broken than even most Godzilla-phaze little brothers can even imagine breaking. They have had patience with a mom who is a grumpy bundle of exhaustion at bedtime many, many nights. They have watched Dad deal with onlookers in public who decided to throw insults at us about Garrett's behavior, and due to their dad's immense patience and class, they have yet to see him retaliate with anything but peace, AND they have yet to see hum carted off to jail for punching these grumps in the face!!!! Addie and Ainslee have not had as many people over to play due to the simple fact that the more folks here, the more chaos, noise, and destruction. The girls have been through so much with this little child we had third, but in it, their lives are changed, and it hasn't all been bad!!!

Recently, after we stopped watching t.v. except for planned Christmas shows or movies we buy or rent as a family, and we slowed our pace to focus more on the humans in our home and not the world around us, we noticed things changing. No, Garrett wasn't having a spurt of positive attitude, but the girls were choosing to jump in more to be a part of his world. Ainslee started changing poop diapers, and NO, I would NEVER ask ANYONE to change one of those (Except Aunt Becca, of course!)!!! Addie started letting him do her ballet stretches with her in the living room. Addie started dancing to the music he jumps around to on his CD player. They both rush to comfort him and love on him more when he falls or gets hurt. Ainslee started wanting to sit by him in the car and let him play with whatever she brought along for the ride. And then two days ago, Ainslee was up with him playing, even letting him play Barbies with her, and that's a huge deal for her!! Last night, RaeAnn, Garrett's developmental therapist and Personal Care professional, was here. Garrett wasn't wanting to do his "work" he has to do with her, and Ainslee bribed him with playing. So he did his work and they disappeared upstairs for over a half-hour doing constructive play with babydolls. It was wonderful!! And I actually believe Ainslee was having fun, not just tolerating her loud brother. 

Of course time is flying, bodies are changing, and I am watching my two little girls become young ladies right before my eyes, but the most wonderful thing is seeing them grow into the BIG people God made them to be. I have no doubt that they will use their past experiences with their little brother to change the world around them. Maybe it will be for another family somehow as a caregiver or volunteer, maybe one of them will have a special needs child, or maybe it will simply be that they won't stare when they see someone who is different, but they will walk right over, meet that person, and TALK to them, be a friend, and love people just as they are.

I just had to share how proud I am of my girls!!! God is at work!!!

Godspeed,
CL


Tuesday, November 27, 2012


Make-A-Wish Idaho asked to use the photo of Garrett meeting Mickey from his MAW trip, and of course we said yes!!!! We were invited to join other MAW families to sit on the Idaho State Capitol steps in Boise for the Christmas Tree lighting and the kick-off of the MAW Season of Wishes campaign where Garrett's poster was displayed on the steps and then was moved into the capitol for the remainder of the Christmas season.  








Garrett was SO excited to realize HE was on the poster! He did lots of hamming-up in the photos I took. Ainslee, RaeAnn and I took him, and though it was quite chilly, we had a wonderful evening, including dinner at a fabulous place! Fancy! When the festivities were over at the capitol, we drove towards home and stopped to enjoy walking along Indian Creek in Caldwell, Idaho, to see the magnificent Christmas light display. Garrett fell asleep in our bed tonight on the cozy heated mattress cover to the sound of my daily Bible reading. All-in-all a terrific day minus a few really tough breakdowns, only one really long major one....over a broken candy cane.....

Only two weeks until we travel to Seattle to see the Mito specialist, and I am excited because my mom will be joining Garrett and me...and Sammy (Garrett's Autism service dog, of course!! 

Godspeed and Merry Christmas!
CL

Wednesday, November 21, 2012

Who Was I To Garrett While Here?

I was driving home from the hospital with Garrett after running a few Christmas shopping errands and getting lunch, and I had the most interesting, yet scary thought.

Who will I be to Garrett when we are in Heaven? I know I will be his mom, but I think back about the time we have shared here, the frustrations, lost-tempers, not-knowing how to best deal with his mental challenges, lack of bowel control, relationships and on and on. And I wonder what he will say to me when he sees me there for the first time, in the rest of eternity. Will he run to me and throw his arms around me and be happy to see me? Will he approach me as a dog who has been mistreated by a human and needs to learn to trust again? Will he need to talk it out and be able to tell me how he REALLY felt here on Earth, in words I can understand and relate to? Will he be angry that I was not patient always? Will he be thankful I fought tooth and nail for him? Will he say he wishes I spent more one on one time with him....or less. What will my job approval rating be? Will he want to know me? Will he shy away never to be close to me?

And no, I have not gone off the cliff yet. I was just thinking, and Garrett was quiet, and there was no phone call, and I started thinking.....

I guess I should think about every relationship this same way. But with Garrett it is different. With all of the interference in his little head that disrupts his very own sanity, and much less ours, who will he be? Will he be "healed or normal," or the same as now. I honestly look forward to meeting him in a time and place where we better understand each other. But wait, I have time now to leave nothing on the court, nothing on the table, take it all, take it all in, use the time I have, and love this kid.

In the end, which is actually the beginning, continued for longer than I can ever imagine, I want to have no more regrets. I want Garrett to know he is valued, appreciated, adored, and worth every bead of sweat, drop of tears, and intense emotion I have ever and will ever have. I want him to know he is loved.

Godspeed,
Clara-Leigh

EEG, Check!

Yesterday morning we went to the hospital for Garrett's 24 hour EEG to look for seizure activity. And while we do not have results yet, the neuro who came by looked at one spell he had that I saw, and the EEG activity looked normal.....YAY!! We will get the CD of the test next week in time to take to Seattle to see Dr. S. The testing started officially at 10 a.m., and we were so blessed to have several sweet friends drop by AND Grouchy, Addie and Ainslee. 

Garrett has a girl, a friend, a girlfriend, a friend-girl....her name is Ashley. She is precious, and like Garrett, she is a PIRATE!! In fact, when her mom, my sweet friend, Amber, told Ashley they were going to visit Garrett, she put on her pirate outfit and even had her mom go buy matching pirate hats for Garrett and her!!! Here, they both stop for a millisecond (THIS IS VERY VERY VERY RARE!!!) for a photo. 


This next photo breaks my heart in a wonderful way! Garrett had a tech come in to add more adhesive to two leads, and Garrett HATES this whole process! In fact, to get him hooked up, he had to be body-wrapped in a sheet and held down....not good. Ashley holds Garrett's hand while he is scared to death:


Want to see something really neat? Right outside Garrett's hospital room is this piece of adorable art......what are the odds?


Garrett was getting a little tired and crabby, so he didn't want the girls "CLOSE TO ME," but I had to snap a photo either way. At least the girls were being sweet for the picture. I guess two out of three isn't a loss! These two girls have grown into such patient, loving sisters to a brother that can make you want to scream very frequently. It is interesting to see how they are better coping with Garrett's quirks, short fuse, oddities and noise. I am so proud of them both. This photo speaks volumes to me. Here Garrett has just screamed for them not to get close to him and spaced our on a Star Wars movie, yet the girls keep it together, smile their lovely smiles, and let weird Mom have her way.


And not at all least, finally, here is the toy that helped Garrett make it through.....Floppy Woody....and yes, there is a terrific story behind the name, but I have another post brewing that I want to complete tonight.


Happy Thanksgiving.
Godspeed,
CL

Thursday, November 15, 2012

Doctors and Better Day

Let me start by saying that when God starts my day with this, I know that they day will be good.........

Appaloosa Horses On Treasure Valley 

Father Let Your Light Shine Down


And then we went to pick up Garrett's developmental therapist for a day of appointments and learning and fun!

First stop was to a new neurologist, and he was great! I mean that he listened, was very respectful, insightful, and even talked like he knew quite a bit about mitochondrial disease, though seems like he wasn't so up on Garrett's type. He will be now, I bet! He examined Garrett and noted he has mildly decreased tone, but he was overall happy with his physical little self. Garrett weighed 45 pounds today, and that's super! He is 46 inches tall. He is really starting to get taller very fast. Most of the appointment was the neurologist getting to know Garrett, and then we really focused in on his behavioral issues and the meds he is on. I must add that every time we started talking about Garrett's ticks, the neurologist started doing this tick involving his eyes. At first, I thought the doctor was messing with me, but he WASN'T!!! For THE FIRST TIME EVER, I kept my mouth shut! He says he wants one doc only to deal with these mental meds, but he feels they are safe but the dosages need to be bumped up one at a time to try to help Garrett out. He also said the Risperdol will eventually not work at all, but should be able to be adjusted up some to help with Garrett's ticks and repetitive behaviors. He also said it can cause even males to get breasts and LACTATE.....THAT IS WEIRD!! Not seeing that yet!! Said he would gladly manage the meds, but not until I speak with Garrett's developmental pediatrician on Monday. This new neurologist is they type doctor I prefer as he was thorough, thoughtful, and answered all the little things I thought to ask without rushing us. And he was great with Garrett. I asked to have him be our permanent neuro here in Boise. Looks like he is here one week per month and the rest of the time in Twin Falls. At least seems like he is more available for med help and such than the developmental pediatrician. That's good. He also wrote for Garrett to have an in-hospital, 24 hour EEG that will also be video taped. He wants us pressing a button each time we see an "event," so if it isn't seizures, they can correlate the button-pushing to the data and the video and we can rule it out if possible. Scheduling will call us tomorrow to arrange soon so we have the report and disc before our December Mito appointment in Seattle. Neuro also said Garrett's sleep study was pretty great....that's super!!!

Next was pulmonology. No concerns, and again he reviewed the sleep study from May again as well. We are cleared with him unless we have issues. Cross off one doc!! YAY!!

Garrett was pretty good today! He did have a blood draw we waited over an hour and a half for in the hospital, but he was only loud, not wild. We didn't take his service dog we are training......too much intensity, and I didn't want any distractions for ME today!! We finished the day with lunch at a restaurant with a playground and then to his weekly indoor play-time and developmental therapy time at an indoor play place called Jabbers.

Almost daily, Garrett gets "stuck" on one particular thing, phrase, or topic. Today's was particularly clever:
Garrett: Hey mom? Why do people say "see you later" when you don't see them later?

Godspeed,
CL

Wednesday, November 14, 2012

"Sir" Garrett


Last night RaeAnn, one of Garrett's caregivers/developmental therapist, saw Garrett flitting about the house in his knight cape and sword my mom bought him during his Make-A-Wish trip and asked him if she could knight him. He agreed, and the ceremony went very well.
I present Sir John Garrett Evans!!!

Tuesday, November 13, 2012

What Can WE Do To Make This Better?

Baby steps. From Dave Ramsey to setting goals, we mention "baby steps" all the time. That's back where I find myself today, at the beginning, again.

RaeAnn, Garrett's developmental therapist AND personal care services provider, called today with a good strategy. Since Garrett's behaviors seem to increase one hundred fold when she arrives, she thought about the situation and called with this idea. What if she came to my house today and rode with me to pick Garrett up from school, see his class, and bring Sammy along? She theorized if we did it this way instead of me picking her up after I got Garrett, it might go better. It worked! No, the afternoon wasn't void of him trying to run away from the car into the parking lot, mentioning that he said the "S" or "H" words or saying over and over and over "I touched RaeAnn's boob" and actually trying a few times. And yes, he had to leave the indoor trampoline park early for these exact behaviors, but it was a better day.

Have any of you ever seen an angel? I mean a REAL angel, live, in person??? I have, and it is RaeAnn. This lady is the REAL DEAL!!!!! She has shed tears with me this past weekend trying to crack the code to what's got Garrett out of whack....even to the point, in tears, of APOLOGIZING that if she is the reason for the downward slipping mental stuff, she understands if we don't want her here. OH MY GOSH, that was a difficult moment. She followed that with drying the tears enough to say she didn't EVER WANT TO LEAVE US and would NEVER give up on Garrett. My heart broke for this angel God shares with our family. We love her!!!! She is one of the absolute best things to ever happen to Garrett, and to me.

Today Garrett played on his iTouch lots in the car, watching a movie and playing a train game. It was a different deal than the past two days where the car rides were terror. We got his mental meds filled today, and I am so excited to talk to neurology Thursday about scheduling an EEG and then Monday seeing developmental pediatrics to discuss all sorts of things.

In all of this, I know God will never leave our sides. I know His plans for Garrett are for good. And we are blessed.

Godspeed,
Clara-Leigh

Response On Worsening Mental Issues

Last night I emailed Garrett's Mito doctor's nurse (WHO I LOVE!!!!) and let her know about the increased behaviors and so on. She got right back to me this evening after talking the possible seizures, increased anxiety and horribly increased negative behaviors, ticks, and obsessions, and she said that the doctor thinks given that information, that "unfortunately he is evolving more into autism." SLAM. CRAP. SHIT!!!!!!!! And I mean it. If you have followed this roller-coaster of life with out family and  Garrett, attempts to stay positive and rosy, and even in some cases, complete denial, you will know I have dreaded this exact situation longer than I have been a mom! My WORST fear as a mom and before I had Addie, my oldest child, was to have a child with severe mental disabilities. And I wasn't thinking a child with Down's Syndrome or the likes. I mean the ravaging horror of autism with no rhyme, reason, and no end in sight. DO NOT jump me on this post if you want to defend autistic kiddos and how wonderful they can be, even in the most difficult cases. I KNOW they can be blessings, and Garrett DOES bless me on a daily basis. But this was MY fear. And it looks to be playing out right before my eyes. Guess I shouldn't have prayed for God to give me more patience and bravery, huh?

We see Garrett's Mito specialist in Seattle in the second week of December. This week we see peds neuro and pulmonology. Then next week we see developmental pediatrician. Developmental peds is the doctor who manages Garrett's mental meds: Zoloft, Risperdol and Focalin. I am glad we have all of these appointments coming up fast. I also asked the Mito doc's nurse if we could get a 24 hr or longer EEG to look for seizure activity. She said there wasn't time, but we could get it done here and then bring the disc to them in December. The doctor also told her that getting blood work done would certainly not hurt. It's time for urine protein and blood sugar for sure, and it has been over a year for pyruvate, lactic acid and more. So I wait to hear about what exact things they would like to see.

On the up side, Garrett's dog, Sammy, is doing really well. She is an angel...not a dog, I promise! I promise photos and more info soon, but looks like Garrett may have a autism service dog in training very soon!! He has taken to her! Before Sammy, he never gave any attention to animals save a few horseback rides he took with me....after begging and bribing him for my selfishness! But he LIKES her!!! I have so many things I want to share about Sammy, but again, time isn't available, so let's just leave it at the certainty that I have that Sammy is a very positive "person" in Garrett's life. The gentleman who will be working with Sammy and us on her obedience and service training gave us homework: get a vest for her and take her EVERYWHERE with us. So far, we are pretty much doing that. She has been to the pharmacy, grocery store, indoor playground, restaurant, school three times for quick trips,pet store (several times!!), and today goes to poop therapy, indoor trampoline park, McDonalds, and maybe to TJ Maxx if I get MY way!!! She is a honey-colored three year old yellow lab with enough energy to be fun, but is very considerate, obedient, kind, loving and cuddly!! Best of all, Garrett cares about her.....THIS IS MASSIVE!!!!! Garrett is taking some of his worst moments and letting them become "comfort Sammy moments" when on his own he will go pet her and begin telling her how good she is and how she will be okay. I MELT!!! And yes, we are protecting her and always with him when Sammy is around. We know all too well that Garrett can be rough. I believe Sammy is answer to our prayers as a comfort and friend to Garrett. Yesterday his teacher allowed him to do show and tell about Sammy while we visited the class. He was so proud of her. He is also taking responsibility a little by feeding her in the evenings. She is such a neat dog. The lady who raised her even has her trained to "wait" to begin eating. She WILL NOT take a single bite until Garrett says "OKAY!" And her favorite thing to do even above truck rides and snuggles and occasional fetching is to EAT. I pray she lives a long, happy life with us. I know she has been a big stress-relief for me, just having her around. And I believe she will help Garrett more and more when we are in public.

Godspeed,
CL

Saturday, November 10, 2012

Where Do I Begin? Where Will This End?

Today was a hard day, a very hard day. And while I realize that it wasn't hard related to families with children in their last days or inpatient, or who have lost their young ones to Heaven very early, for me, it was a relatively VERY hard day.

For a couple months, Garrett has struggled more emotionally with more ticks, more "spacing out" episodes that we now think are seizures, increased anxiety, behaviors and outbursts. Today was the worst to date. He is suddenly scared to use the toilet, wash his hands, and take his meds. When I have to leave home or leave a place where he is, besides school or church, he loses it. And I mean frothing at the mouth, trembling, screaming, hanging on me, spitting at his caregiver the other day, even. He no longer can use "yes" and "no" independently. Everything is "yes-no," leading to some sticky situations as I though it was him being sassy, so I allowed his sister to pinch him when he would ask to be pinched and she would ask back and he would say "yes-no" and I advised her to pinch if he said yes or yes-no......didn't work. I learned he wasn't meaning to say both. He now dumps bottles of water upside down for no reason. He cannot answer why. He is once more dumping out his whole bowl of cereal more frequently and gets very upset about it when it "happens," and then he cannot answer as to why he did it. I though these were "behavioral issues" in the sense he needed reprimand, perhaps increased supervision at critical points like eating and drinking, and would be a "quick phase." But I know it is not the case. He is slipping. His mind is changing.

Good news is that we see the wizzard, the developmental pediatrician, in a week. This man is brilliant, yet very overworked/overbooked, maybe because his office is closed Fridays, and I HATE this situation because communication is very sparse until an appointment. Boy does he have a mother bear coming in next Monday morning ready to pounce on and rip into this disease!! I have typed out the med list and my concerns and observations. I have added even since I made the sheets today. Garrett's developmental therapist is accompanying us, and his new dog may come as well (COOL POST COMING ABOUT HIS NEW DOG!!!!) I think his DT has some great info to share as well, and she helps me see I am not crazy, but we both may be soon caring for Garrett!!! I believe it is time to wean him from his 3 mental meds and get a good baseline, then start over with treatment. What I am seeing in Garrett's interaction with Grouchy, his DT and me is classic Obsessive Defiant Disorder, or ODD, but I will punch the doctor who gives me the classic treatment protocol of family therapy and counseling. I mean it!!! This isn't stemming from any of the simpler problems like home life. This is his precious body being totally wrecked by Mito, starting with the brain. I so long to have my "developmental delayed, failure to thrive" baby back when the mental stuff was merely delay and not this terror. No joke, my son's mind is so twisted up in his little head, and he is miserable. No kid would CHOOSE to act out like Garrett is doing to this extent by choice. And yes, I have read the parenting books....tons of them. And yes, I have tried all of the possible strategies.


Most concerning is that Grouchy and I are certain we are seeing seizure activity, and if I think back through Garrett's seven years with us, and research seizures and watch more example videos, I believe now that Garrett has had seizures since very young. They have never been caught on camera that we know....although old videos of him as an infant may hold some clues. I am certain we are seeing them now, but they are not the classic Grand Mal seizures that most people imagine. They are times when he just loses his ability to be in the moment or takes an "absence." Sometimes they are more like jerking of the arms and facial expressions that do not match the mood or situation. So then the questions remains: Is this new, or are we just only now realizing they are happening. I will try to catch them on film.

So after the worst behavioral day to date, I felt bad asking his DT to stay later so I could go with my husband and daughters to hear Lee Strobel, author of The Case For Christ and other books, at our church. I decided to brave it with Garrett and let Oscar just take the girls and enjoy. That way I could leave if I needed to. I never in a million years expected Garrett to be able to sit still in the sanctuary and listen to a speaker. OH MY WORD. He did it!!! Besides the obsessed whispers "Okay, goodnight" over and over and over as he apparently associates goodnight to quiet, he did it!! I enjoyed hearing Mr. Strobel's testimony, and I found it rather telling that my son could reach such behavioral greatness in church, no less!! God has a brilliant sense of humor and grace-giving capacity!! Just when I had almost lost all hope!

As far as the future and that outlook in my sights, I am trying not to go there at all. While some people in our lives love to encourage us to the point of insinuating that Garrett will get better and better, I am no longer in that camp. Yes, he is learning letter sounds and seems like he will someday read, but with the behaviors evolving into larger monsters like his touching his DT on the boobs and now offering to hurt people, I just cannot bank on the odds the future is going to be anything wonderful. I truly pray for my baby to be back. I miss him!!  Mito sucks.

Goodnight and Godspeed.
CL