Hello all! I hope you are all well this fine first week of Spring! Its lightly snowing here, so it isnt feeling very spring-like in this moment, but yesterday was gorgeous with blue skies and sunshine to warm you through and through; a promise of warmer weather just around the corner. YAY! Channel 9 news, here in Denver, interviewed our family about 5 months ago when they found out about Griffins chess playing after his hemispherectomy surgery. They are going to air the story this Sunday (March 23rd) during the 9pm and 10pm newscast. If you miss it and want to see it, the full story will be on their website. We will have to record it because the kiddos and I are going to take a quick trip to see Grandpa and Grandma tomorrow. Its spring break and we are heading down south to hang with two of the most magnificent people on this planet. UGH...just had to stop for the 3rd time and go upstairs to break up a fight...oh boy...weve only just started our break....argh! The kiddos are SUPER excited!!! In my idiocy about a week ago, I mentioned this trip in their presence, well--with my kiddos hearing, that could have been within a mile, so Ive heard Moira say: Are we going yet? Is it time to see grandma and grandpa? Is it right now???? over and over and over and over and O-VV-EEE-RRRRRR... Im pretty sure she has mentioned the trip at least 200 times. Ive been a mom for over 9 years now, I know better but still mentioned this trip within earshot of my kids. What was I thinking????????????? Im eager to go, but very sad that Kevin wont be able to come with us, he has to work. So warning to all people that are Kevins friends on Facebook---he may be posting more ridiculous/bizarre/horrifying/disturbing photos, movies, and whatever else this clever man can find in his efforts to keep the boredom to a minimum with an empty house! Its going to be weird for him...all of us gone...the whole house quiet. Weird, probably not! It will be bliss. He wont be home much because of work, but I predict some special postings from him!!! . Gotta love that man...wouldnt have near as much laughter without him right? Right! Its truly amazing how different this spring break will be compared to last years break (knock on wood). Tons of behavioral issues, lots of seizures, and emergency meds. Oh---I better pack that just in case. Wow, I almost forgot. That is a bittersweet thing. In the beginning of Griffins battle with the eBeast, I never took the Diastat with us, in fact I had to dig through the medicine cabinet to find it. Then the journey took a turn and it was in my purse--always with me. Oh how things change. I know exactly where it is right now, I just need to put it into our bag so I have it-just in case. Better to have it and not need it than to need it and not have it . Boy oh boy, I hope I didnt jinx us by saying/writing this! Anyway---since Im here to tell you about the 9 news story, Ill do a quick update with how Griffins doing. Since surgery weve seen some odd behaviors and/or issues that werent clear (and still arent) as to what was truly going on. Healing? Non-convulsive seizures? New brain rewiring? Hydrocephalus? So we had been seeing some new things, more obvious things, like having a couple bathroom accidents with no real explanation as to why, and with the therapists also witnessing some of these concerning things and encouraging us to get Griffin seen by our doc, we decided to get a quick MRI to rule out hydrocephalus. We had a scan a couple weeks ago and our surgeon looked at the scan and said that it did look different than the other two, but he didnt think it was hydro at this point. But he definitely said that he wanted us to see an ophthalmologist to get Griffins vision tested and to see if they see any signs of hydrocephalus. Im very happy that we are going on this appointment, not only to confirm or deny hydro, but to get a baseline for his vision. Especially with his visual field loss, due to surgery he has lost his right peripheral vision on both of his eyes. Im hopeful this can help us know how to help him with this impairment. He is such a trooper and compensates, but sometimes he runs into walls, dressers, etc. and I worry hes going to get really hurt. We are also going to get an ambulatory EEG to rule out any subclinical seizure activity. This will be Griffins first ambulatory EEG, hes always been admitted to the hospital for his many EEG testings. We talked about it and in his true hero fashion, was like, Sure mom. Ill do that at school if I need to. Gotta love how much of a champ he is!!! So we should be having that within the next few weeks as well as the appointment with the opthamologist at Childrens hospital. Im grateful that we have a plan and just maybe some answers, so that I can ease some of the worry about what is going on with Griffin. Its so hard to know what is what due to him still only being over 10 months post op from the most radical brain surgery there is. As always, we are so grateful for all of your continued support and love for our super hero. Hes still smiling, laughing, learning, and starting to include some really lovely ornery behavior. Hes perfect! Hes grown A LOT over the last 10 months and hes only 4-5 inches shorter than me, thats not saying much since Im only 5 feet .05 inches tall, but to this mama its a big deal, and hes starting to show signs of girls becoming a priority in his life. Spring is such a great time for growth right? Love you all! Kori
Posted on: Sat, 22 Mar 2014 22:45:59 +0000
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