I just first want to say THANK YOU to all of the people in my life who pray, love, support and help us in any way. Seriously, we are so blessed to have each of you on our team, and we love you dearly!!
That said, I feel like updating some on Garrett's current medical and mental status. A few important appointments are coming up in the next weeks and days. Tomorrow, he sees a PA for an ear, nose and throat doctor. Once we see the PA, then we can see the doctor at a later time if needed. I wasn't loving this gate keeping concept at first, but I have decided to have an open mind and see how it goes with that one tomorrow before drawing conclusions. Then on October 11, he sees a pediatric cardiologist in Boise. It is just time for his annual heart checkup. Then soon we hope to schedule pulmonology. Garrett's pediatric GI nurse practitioner wants him to be re-evaluated for airway issues and reflux damage. She noted his hoarse, raspy voice right off. I always notice that when he talks his neck seems to strain and huge veins or arteries pop up on his neck. My guess is that he isn't using any muscles below his throat to talk, so he strains. She is worried he has continuing silent reflux. I am playing phone tag with the GI nurse practitioner's nurse as Garrett's clean out hasn't gone as planned at all. I just do not feel he actually cleaned out, and now on maintenance regimen, I don't see him having enough movements. Perplexing, and I have a gut feeling (no pun intended), that his GI tract is going in a bad direction. Meanwhile, he is just under 40 pounds as he has been for a few years and is 42 inches tall, so he is growing taller!!! We will see Dr. Koenig in Houston on January third. Behaviorally, he is talking great, coming up with some very witty, humorous things, and becoming quite the con artist!!! However, his frustration, tiredness and non-compliance issues are still very much present. As his mom, I feel I get the short end of the Garrett stick, but don't we all get that from our kiddos usually? I know they usually act better for anyone but mom, but seriously, does it have to be this bad???? It is like everything I try to do with him, especially at home, is destined to end in a threat, pop, raised voice..... For instance, just a few nights ago while my parents and Grouchy were still all home, we had a little birthday celebration for Ainslee, who turns nine next week. As my mom is taking photos, I squat down by Garrett and try to have my picture made with him. He smiled for a second, just long enough for my mom's camera to still keep delaying, then would NOT look at the camera or stop pulling away from me and acting like a toddler. And then it happened. I literally pushed him farther away as he tried to pull away. Unfortunately, I have been pushing him away mentally for a year or so. I just get so tired of the constant struggle. Running from me for meds, clothes, or just whenever I call to him, getting kicked while changing his diaper or clothes, having him run up to me and hit me or call me stupid. It's just plain aggravating and helpless feeling all in one. Many, many, many, many times he has seen the frustration and "giving up" on my face. I know he has. He will sometimes, after a stern verbal reprimand or threat look at me and say, "smile Mommy. Be happy." And then to feel myself, without even thinking, push him away. I give up. I figure, "What does it matter if I fake happiness and okay-ness with this mess? It doesn't ever change his behavior...." I get tired.....daily.....of the struggle. I did not shove him or hurt him, and maybe he didn't even notice, but my heart was cold and I wanted to just show him I was fine if he just went away from me that moment. And I meant it, perhaps more deeply than I even know. Of course I do not want my child off of this earth. But I do want a chance. I want a chance at a relationship with my boy. I want him to do more than bounce off of me when I get home with a quick huggish-type lean into me before ADHA-ing to the next two minute thing he trots off to do. I want him to want to sit by me at the table. I want him to want to be near me.....but he just doesn't want to. And maybe that is because I have pushed him away for so long. And then I try to leave to go anywhere and he acts like I am crushing him by leaving him.....REALLY!?!?!?!? I could go on all night. Heck, glad you guys don't charge by the hour!!!!SO the update is about Garrett, not me, but I felt I needed to get this pushing away stuff addressed.
He is good at school and church and sometimes for my dear friend Andrea who does his developmental therapy. He does try Andrea a lot, but she holds the little dude, very lovingly, to the fire of improvement and learning, and I love her for that.....and many other things, of course!!! I guess in the end, I am his mom, he is my child, and I have to find a place where I am okay with whatever our relationship or interaction is each day. I love him!!
Whew, didn't mean to go on like that!!!
On another front, we tragically lost Addie's sweet dog, Camper, last Friday. Grouchy was coming in our drive and turning a different way than usual as he planned to back up to our trailer to go get corn, and ran over Camper. I was helping a neighbor work cows and my dad called to tell me. Grouchy has been so terribly sad it happened, and Addie feels like she lost her baby!!! Camper was born at the animal shelter where my mom volunteers, and Addie was with her the second day of Camper's life and got to love on the whole litter of pups. Grouchy, Mom and I surprised Addie by my sweet mom driving 8 hours to bring Camper to her. Addie had no idea!! It was so fun!! Then Addie took this tiny pekingese mix pup through obedience school, and both Addie and Camper did SO WELL!!!! He has been a really cool little dog. He sat on her desk during school, loved to lay on Addie's bed for hours while Addie read, and was just plain cute and fun. I would post photos, but I will cry more if I see Camper's face again tonight!!!
On a good note, Oscar has been ready to get another lab-type dog since his boy, Remmi, died earlier in the summer. We saw a dog on Craigslist and went to meet the dog and his owner today. We ended up bring "Sonny" home, all 110 pounds of neurotic fetching machine, and he is such a sweetheart. His previous owner's lifestyle had changed, and he could not keep him with the traveling he was doing. He has screened many people and chose us to take his boy. Sonny is huge, sweet and very active. He LOVES to fetch over and over and over and over and over!!!! He is whining a lot tonight as he is adjusting to life away from his owner and a new place. He did stay close to our house today and our quiet little mysterious red heeler dog, Ginger, seemed to like him so much, so they played some, and that was fun!!! Addie says she really likes Sonny, but we know she wants another smallish dog as her own little companion. We all need to heal and let some time help with that after Camper's death. It is so amazing how these pets become such a part of our lives and how much we can love them......and how much loss hurts.
If you are not familiar with it yet, do a little search for a drug called EPI-743. It is the first true Mito drug out there, and trials are showing promising, extremely promising results for the select few using it. Please pray more Mito doc's hospitals can get approval and get the product in. Pray it will save even more lives and that patients hang on long enough to try it. And pray for those people "not within the estimated last 90 days of life," or "not sick enough" to get to try the drug YET. Science is catching up to Mito, and we need prayers, funds and awareness to make it all happen!!!
Again, thank you to each of you who board the Mito and life-in-general roller coaster with us daily, weekly or monthly!!!! We cannot do this without you!!!
Godspeed,
Clara-Leigh
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