tag:blogger.com,1999:blog-25488293.post6268034129436838489..comments2024-03-02T02:31:37.533-08:00Comments on soren rogers: How's Soren?Amy Keating Rogershttp://www.blogger.com/profile/12223259789007412737noreply@blogger.comBlogger5125tag:blogger.com,1999:blog-25488293.post-89901879892589785532018-05-10T19:28:57.682-07:002018-05-10T19:28:57.682-07:00www0511
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Yes. I received your comment.
Sorry to hear...Amy,<br /><br />Yes. I received your comment.<br /><br />Sorry to hear that Soren continues to have so many seizures, so frequently.<br /><br />I can’t imagine having a single tonic-clonic seizure, let alone 3 in a day. I don’t know how these kids do it. It breaks my heart, every time my son, Bryce, has a seizure. Yet, in spite of all his difficulties, he is (typically) a very happy little kid. (He can also be a pill, but I try my best to focus on the positives).<br /><br />I read a bit more of your blog. Different diagnoses, but similar experiences. I’ll have to ask you how you got your regional center to help with your ramp van, sometime. That and a new bath system are on our list, as Bryce is now about 75lbs and while I can still transfer him it’s getting tougher for my wife and impossible for our parents.<br /><br />On a more lighthearted note, October is fast approaching. Have you ever tricked out Soren’s wheelchair Halloween? Most years have been pretty boring, but we’ve transformed Bryce’s ride into Thomas the Tank Engine, when he was younger, and more recently a Star Wars TIE Fighter (that I was pretty proud of).<br /><br />All the best.<br /><br />- JeffJeff McFarlandhttps://www.blogger.com/profile/16667552703450325881noreply@blogger.comtag:blogger.com,1999:blog-25488293.post-86162949571330844032014-09-02T12:07:41.121-07:002014-09-02T12:07:41.121-07:00Hi Jeff,
I'm hoping you see this comment. I&...Hi Jeff,<br /><br />I'm hoping you see this comment. I'm glad seeing me in the Bronies documentary inspired you to track me down. I'm so sorry to hear about your son's struggles, but I'm glad that the Keppra is helping him. <br /><br />Sadly, Soren tends to have a seizure a day. Yesterday was a bad day and he had 3 tonic clonics. But he's been bouncing back from them well thanks to the new meds.<br /><br />Yes, finding someone that understands the system is a little miracle. Something that only a fellow traveler would know.<br /><br />Thanks again for leaving such a caring comment.<br /><br />Best,<br /><br />AmyAmy Keating Rogershttps://www.blogger.com/profile/12223259789007412737noreply@blogger.comtag:blogger.com,1999:blog-25488293.post-29458936778569734992014-08-29T13:13:07.978-07:002014-08-29T13:13:07.978-07:00As my daughter (10) was watching the Bronies docum...As my daughter (10) was watching the Bronies documentary I happened to catch your brief comment about having a special needs child. I had to track you down.<br /><br />I’ve only briefly read your blog, so far, but what I’ve read sounds so familiar. I have a son (14) who was born 4 months early and after a grade IV brain hemorrhage was left with multiple disabilities and intractable seizures. I know just how painful it is, as a parent, to watch your child experience a seizure. Fingers crossed that you will find some combination of meds that works for Soren. My son has a VNS that worked wonders on his seizures until he hit puberty. He’s now on Keppra, which has helped cut his seizures to approximately one per month, and does seem to help him rebound quicker.<br /><br />Loved your post about the incontinence products and letters of denial. OMG. Such a pain. You finally find someone that understands what you need at the insurance company, and then next time you call them for something else they don’t exist (quit, transferred...) and nobody else seems to be able to help. So frustrating.<br /><br />I hope the positive changes that you’ve seen (in February) have continued. <br /><br />Best of luck to you.<br /><br />- JeffJeff McFarlandhttps://www.blogger.com/profile/16667552703450325881noreply@blogger.comtag:blogger.com,1999:blog-25488293.post-10622711361685841032014-02-20T14:16:09.108-08:002014-02-20T14:16:09.108-08:00What a timely update - I just added Soren to my pr...What a timely update - I just added Soren to my prayer list three weeks ago. I am delighted for all that progress; I'm sure he's not the only one smiling.Half_theBattlehttps://www.blogger.com/profile/13369681385565655760noreply@blogger.com