Brynn had two Complex Partial Seizures followed by a Tonic Clonic on Wednesday. On Thursday, thanks to the camera recording it, I found a portion around 4 am where his right root twitched for 14 minutes followed by a full body convulsion. I found several more that I had no idea he even had over the first three nights. His Neurologist increased the Zonegran by 50 mgs. to 250. The Depakene is still at 625 mgs. twice daily. He also increased the availability of the Klonopin for him and said to give him one if he has more than one seizure in an hour or if I see any signs of clustering. We dropped the Trazadone back down to 100 mgs. on our own, as Brynn was getting tired without it again. We will see if the Zonegran increase makes it necessary to increase it to two again. Hopefully, we will gain better control again. We go back to Children’s on March 9, so we are getting close. Feels like it has been forever since the last week in November when he went for his testing. Expecting to talk more this time as we know a lot more about the seizures and have videos to show also. We bought the camera system that is able to record on demand or all night. It works great to record all the night activity. I found a 15 minute seizure I had no idea he had on it. He said he was sleepy that day, I didn’t watch it until that night, so I had no idea that his tiredness was seizure related. He is showing interest in Reading again! It is hard to Read with him, knowing that he is doing his absolute best and struggling. He is still using the Merrill Reading Program. He is Reading with the Dig In Reader again. It is a great program for him, from the very beginning of his Home School Journey when we did SOW (Student Of the Word) he has used it. We have tried so many other programs and always come back to Merrill Readers! Merrill strengthens the decoding skills as it builds confidence while using high frequency words in the text. It also has the sequential properties to it that Brynn has always done well with, just like the AVKO Sequential Spelling.  Here is a sample story from the Merrill Reading Program Book B Dig In.

Sid and the Van

I am Sid.
I can fix a van.

The van had a bad fan.
The fan hit the van.
I can tap a pin into the fan.

I see bits on the fan.
With a rag, I got rid of the bits.

I did fix the van.   

I have always been impressed with Brynnon’s ability to pick up on sequential information. I had no idea why, and still do not completely understand it, but it works for him and that is all that matters! AVKO Sequential Spelling has taken him so far in Spelling… I wish he could Read the words he Spells. The brain is a complex and amazing organ. The only answer I have as to why he can Spell a word and not Read it is his wires are missing. His cognitive disability makes it impossible to make that connection. I learned the most from this video I found on you tube while researching Fragile X. It is 80 minutes long and I have watched it a few times. I think about this video all the time as I teach Brynn. What was so frustrating to me before, now makes sense!     

Emerging research on overlapping patterns of cognitive function in fragile x, Turner, and chromosome 22q11.2 deletion syndromes and their implications for intervention. Series: “M.I.N.D. Institute Lecture Series on Neurodevelopmental Disorders” [Health and Medicine] [Show ID: 20284]

Brett is doing wonderful with his Reading. He read Fox on Stage by James Marshall this week. He is enjoying Reading more with each new story. I am using AVKO Sequential Spelling with him as well. I think it’s a great program for anyone!  Brett has taken a fondness to Brandon’s Electric Guitar. He is spending a lot of time with it lately. 

Brett (7)

  It breaks my heart for Brynn to see him advance, knowing that he is being left behind. Brynn had a really hard time when he heard Brett read and realized that he couldn’t read the same stories. I explained that some people are just better at some things than others. Brett cannot take apart a Television and Brynn can.  🙂 This seemed to make him feel better and I have seen a greater confidence in Brynn as he works on his Reading too.  

 Abigail is up to 23 pounds, not bad from 4.11 at birth. She is getting so big… She is counting everything and singing… Such a happy little girl. What a blessing she has been!  She is pretty active and is in the habit of staying up way too late with me watching Brynn… If she sees Brynn move on the monitor she will say uh oh Brynn okay. Children learn so much, even when we think we are not teaching them! 

Brandon (16) and Abigail (20 months)
Brynnon (12)

 

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