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
I'm sorry Garrett is having increasing troubles. That has to be so hard to deal with. I can't imagine. Talon is very hard to care for, in his own way, and your mito path seems very difficult in a different way. You are doing such a good job!!! He is so blessed to have a mommy like you! It would be impossible to always be patient, always see the good. Trust me, I know! Praying for some good news with all of his upcoming appointments. I know they are exhausting, and depending on the outcome of them, can really take a toll emotionally. I will be praying for strength for you and helpful advice from the doctors.
ReplyDeleteI seen your comment about meeting up, and as much as I would LOVE to, we live in St. Louis, not Seattle. I have told my husband before how nice it would be if there was such thing as a mito community, where all of us could live right by each other to always help out, encourage and lift each other up! Then, I realized, thats how it will be in Heaven with all of us believers! We may be seperated in distance now, carrying each other in our hearts, but one day, we will all live together without all of the struggles that come with this life! Can't wait to be there one day, and hug and kiss all the precious babies that I follow on these blogs! And of course, their amazing parents!!
Hang in there! You are doing great, like always, even when it doesn't feel like it!! Praying for better days! Take care!! -Krissy and Tally
Sorry Krissy....I spaced out on that one!! St. Louis, Seattle, all close, right????? Sometimes I am more of a space cadet than I want to admit....YIKES!!!!!! And I think a Mito community would be FABULOUS!! Just think, we could offer housing in apartments or neat homes or duplexes for retired people who would be able to be hired as the kiddos' therapists or caregivers, have accessible playgrounds, restaurants with extra areas for large strollers and wheelchairs. Grocery store with a place for the kiddos to be supervised while we shop.......and meet up for lunch, of course!! Maybe we are onto something for families with challenged kiddos in general.....mmmmmmm
DeleteBlessings to you and sweet Talon. He is one of my heroes!!! THANK YOU for your friendship and words of encouragement!!!
Oh sweetie....I am so sorry for this new curve in the road. I do know what it feels like to have your worst fear come to fruition....it is like living a nightmare. My biggest fear was having a "sick" child. I always thought cancer...I could never watch those fundraisers on tv with all the bald, yellow-pasty, medicine induced little kids, it just seemed like the worst possible scenario a parent would have to live. Today I live with the thought the I will likely outlive my child....I would say I am living my worst nightmare. So, I completely sympathize with you. Why God seasons us through these trials is hard to understand BUT you will survive whatever Garret and whoever he turns out to be....likely unique in his own, as all these mito kids are.
ReplyDeleteMaybe we can hook up again....let's keep in touch as the time nears.
God sends you these angels to help you HANG ON! Thank you for the dog bone. I'll put it on the frig. if I don't eat it first???
ReplyDeleteIF YOU EAT THE DOG BONE, I WILL PROBABLY WORRY ABOUT LEAVING GARRETT WITH YOU EVER, ALONE.......OR IS THAT YOUR PLAN???? I LOVE YOU!
DeletePraying for you, Sammy sound like he came along at just the right time. Funny how that happens :)
ReplyDelete