Every mom worries about their children and whether they are making the right decisions, when it comes to just about everything! When I was pregnant with Tanner, I remember interviewing daycare centers with Brian and finding 2 that we liked, but 1 a little bit more. As we left to go home, I sat in the car and cried. Nothing bad had happened and both schools would have been excellent choices. But what if 1 of the teachers at the school we chose didn't like Tanner? What if he wasn't happy? What if it wasn't as clean as we thought it was? What if we make the wrong choice? If you are not a parent, this may seem very silly to you, but to me, I was about to drop my baby off in the arms of total strangers, having no idea if he would cry a lot or be happy or anything, because he's a baby who can't talk and tell me anything. I'm guessing a similar feeling came over most moms. Now imagine your newborn is now 2 years old and special needs, still non-verbal, and probably always will be. When he cries, is he in pain, does his stomach hurt, is he constipated, is he about to seize, does his head hurt, is he hungry, is he tired, did i accidentally pinch him when picking him up, does something itch.... He can't use his hands to point and completely non-verbal! Is this cry CDKL5 related or typical baby related? Am i thinking of every possibility?
Over the past 2 weeks, we have increased Tanner's dose of CBD oil and decreased one of his pharmaceutical medicines by 2 doses. Since doing that, he has not had any tonic clonics, is smiling periodically and seems to have a little personality coming out. All of that sounds like amazing news to me and that we are headed in the right direction! BUT, he is still having clusters of spasms, in very high numbers and they seem to be a bit more severe than before, which makes me think Infantile Spasms, vs. just myoclonic jerks. (The cluster he just had today was his highest. 201 jerks/spasms/seizures, in just 1 cluster). We chose Depakote as the medicine to put him on months ago because he was having spasms, and all other medicines had not worked. This was the next best one. His eyes continue to dart back and forth, very quickly, but less frequently than before. I thought these were seizures before but now am wondering if it's Nystagmus. How do I know? Are the spasms getting worse because we are weaning? Is the smiling and personality getting better because we are weaning? Are the Tonic Clonics gone because we are weaning or because the oil is working? Am I making the wrong decision in weaning his medicines? Or is all of this just a coincidence? These are the questions that run thru my head every second of every day. I'm not writing this blog because I'm expecting people to comment with "you are doing a great job", "you are a great mom". I appreciate ALL of those comments, but the truth of the matter is that I'm doing the best I can. so If you are wondering if the oil is working, the answer is, I have no idea. Brian and I will make the best decisions we know how to make for Tanner today, and we may change our minds for tomorrow.
As we enter into 2016, we all have goals and hopes and dreams that we want and wish to accomplish right? I hope I surpass my budget at work so I can keep my job. I hope and will continue to try and lose weight. I will always hope and pray and strive to find a cure for CDKL5. But right now, day to day, thinking realistically, all I pray for is that Tanner is able to smile more, smile bigger, smile longer. That he continues to be able to show us more and more of his personality, but most of all, that he is able to live day to day with NO or very FEW seizures. I will leave you with a VERY positive note: Tanner had some amazing therapy sessions this week and for the first time ever, he was able to almost completely support himself in a crawling position. I still can't tell you if any of the decisions we are making are impacting his abilities, but he IS getting stronger and I am certain he is a happy and VERY loved boy. HOPE.LOVE.CURE. Happy New Year to All!
Over the past 2 weeks, we have increased Tanner's dose of CBD oil and decreased one of his pharmaceutical medicines by 2 doses. Since doing that, he has not had any tonic clonics, is smiling periodically and seems to have a little personality coming out. All of that sounds like amazing news to me and that we are headed in the right direction! BUT, he is still having clusters of spasms, in very high numbers and they seem to be a bit more severe than before, which makes me think Infantile Spasms, vs. just myoclonic jerks. (The cluster he just had today was his highest. 201 jerks/spasms/seizures, in just 1 cluster). We chose Depakote as the medicine to put him on months ago because he was having spasms, and all other medicines had not worked. This was the next best one. His eyes continue to dart back and forth, very quickly, but less frequently than before. I thought these were seizures before but now am wondering if it's Nystagmus. How do I know? Are the spasms getting worse because we are weaning? Is the smiling and personality getting better because we are weaning? Are the Tonic Clonics gone because we are weaning or because the oil is working? Am I making the wrong decision in weaning his medicines? Or is all of this just a coincidence? These are the questions that run thru my head every second of every day. I'm not writing this blog because I'm expecting people to comment with "you are doing a great job", "you are a great mom". I appreciate ALL of those comments, but the truth of the matter is that I'm doing the best I can. so If you are wondering if the oil is working, the answer is, I have no idea. Brian and I will make the best decisions we know how to make for Tanner today, and we may change our minds for tomorrow.
As we enter into 2016, we all have goals and hopes and dreams that we want and wish to accomplish right? I hope I surpass my budget at work so I can keep my job. I hope and will continue to try and lose weight. I will always hope and pray and strive to find a cure for CDKL5. But right now, day to day, thinking realistically, all I pray for is that Tanner is able to smile more, smile bigger, smile longer. That he continues to be able to show us more and more of his personality, but most of all, that he is able to live day to day with NO or very FEW seizures. I will leave you with a VERY positive note: Tanner had some amazing therapy sessions this week and for the first time ever, he was able to almost completely support himself in a crawling position. I still can't tell you if any of the decisions we are making are impacting his abilities, but he IS getting stronger and I am certain he is a happy and VERY loved boy. HOPE.LOVE.CURE. Happy New Year to All!
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