New Year off to a good start!



I am really liking this year so far!
Brynn’s 8 week Depakene wean in COMPLETE! Only noticed an increase in small seizures and some increased daytime tiredness, which seems to be leveling off now. We are enjoying his stability seizure wise, with only 1-3 larger seizures a week. Not sure if it is the VNS or the Zonegran increase that is making it possible, I guess time will tell! Even the larger seizures he seems to bounce back from easier and have less effects afterwards. We will go back to Children‘s hospital next week for his VNS increase. I do
feel so much more relaxed with the last several weeks feeling so positive for Brynn. I worry when he sleeps 12-14 hours a day, but if he is not having a seizure increase I can see, I remind myself that he may just need that extra sleep. Will still discuss it with the Neurologist as we know he has seizures we cannot see also. Excited to get our tax refund in a few weeks to help fund fresh new materials for home school. I purchased McGuffy’s Readers for Brynn and he seems to like them so far. A change from the Merrill Readers he has used for so long. I hope that we can bring him to at least the 1.5 level in Reading with them. We have pulled Sequential Spelling from our curriculum as well. It started with his Neuro stating in the office that if he needs assistance in any way to answer the questions (additional statements or questions) it is not counted as right. He couldn‘t answer where he was (Children’s Hospital), What city he was in (New Orleans), What day it was or even what Month we were in. We had talked about going to the appointment on Tuesday, in New Orleans at Children‘s for weeks. He writes the month and day everyday in his home school. I was kind of upset at first thinking, but it’s not his fault that he needs reminders or hints. It’s just the way his brain works, he has to have something to tie things together. He knows New Orleans is where the Super Dome is and he knows Children’s is the Hospital he goes to. After the initial shock that he couldn’t answer, I was upset. I was upset because it got me thinking, well if he can only spell “should” if you give clues (Should, would, could-U should know this) then does he really know how to spell should? If you have to say anything to get the right answer, is it right? My gut ached as I realized, no it’s not. It feels better to think it is, but in the real world it’s wrong. If after 2+ years of giving those reminders in the AVKO Sequential Spelling he still cannot spell those words without me sounding them out for him and giving hints, I must conclude that he has not been successful with it. So we started an old Jones Spelling book. He will be given three words every Monday to dictate sentences for. I will write the sentences and he will copy and read them a few times a day. On Friday he will be given the sentences and be asked to  write them. It’s his sentences, that he made up, so he will be connected to them. Hopefully, this will give better results than spelling 25 words a day has. Brett (8) is Reading at a 3rd grade level, so he will begin to use Alpha Omega LifePacs this year. He is confident and able to work independently, which will allow more time for me to work one on one with Brynn. Abigail will be working in Pre-K to keep her busy! 🙂 I will be buying Brynn lots of work books focused heavily on inferencing, Context Clues, Writing, Punctuation and Thinking Skills. After discussing things with a teacher friend of mine, she helped me realize the reality that he is 13, and he just may never read above a first grade level. I knew this before, but I thought if we worked hard enough he would advance forward over time. He has stayed at this same exact level for almost two years now. So at this point we need to focus on fine tuning the skills that he has attained as we add more, hoping that he will retain them. Deep down inside I am a bit excited to see if this lower seizure baseline will stay as it certainly will help his cognitive function. I will be asking about Neuropsychological testing again at this visit. As it is important to know what if any impact the past seizures have had on his overall ability. 
 A real beautiful person, the swing lady I talked about before, is sending the boys and Abigail $100 gift cards to spend on clothing. What a blessing! She is also giving a $200 gift card for household stuff. I think I see a new set of pots in my future! 🙂

We are definitely more at peace here in MS, the air is cleaner and our minds are too! I am learning to trust in our Abba Father and lean on Him for understanding instead of fighting through all the details myself, trying to figure it all out. Learning too, that we don’t have to understand every single thing, we just have to trust Him and His will in all things and know that it will all work out for His Glory. I have done all I can do, now I will stand and trust Him! He who began a good work in me, will be faithful to complete it!  ~Denise
 
   

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