Month: April 2014

prayeroffaith

Circles of Reality….

Ever feel like your going in circles? I mean really going in circles, in life. When something happens it doesn’t seem new, just a repeat of the same circle. I find myself feeling this way a lot now, especially with the boys. So much of what they are going through is the same, watching Brett is just like watching Brynn all over again. I have a tendency to obsess over things. (Pretty sure you may have already figured that out with my past ramblings.) I suspect it roots from Mommas murder. It’s hard not to think that had I asked the right questions or researched it better, maybe the truth would have been known. 
There comes a time when you have to just accept things as they come to preserve your sanity. That’s where I am with this monster called Epilepsy. It has stolen so much from Brynn and to see Brett affected by it is just heartbreaking. The reality is that I can do nothing to change it, I can do nothing to fix it and I have done everything I can do. I pray every day for a cure  and the
seizures to stop, have spent days, weeks and months researching and trying to figure it out. I have tried a few diets, omissions in diet and even several herbal and even homeopathic remedies with no success. The answer is obviously not a simple one and maybe I am just not meant to have it today. I have accepted that, although that will not stop me from looking or praying it will!  
Brett’s VNS surgery was scheduled for April 4th. We spent Epilepsy Awareness Day (March 26, 2014) at the Zoo, celebrating Purple Day and having a fun family day before Brett’s surgery. It was a lovely day! We handed out lots of Purple Bags with Cards, pictures, Purple Epilepsy Warrior Boys Bracelets and had so much fun! Met some realy nice people and got to talk about Epilepsy with some really nice people. I hope we can go to a bigger “Real” event next year!      

I took Brynn to the ER on Sunday, with seizure clustering, fever, congestion and he had become lethargic. He was given the diagnosis of Mycoplasma infection. This is the third time Brynn has had Walking Pneumonia. I kept them separated as much as possible, used Lysol like crazy… but it wasn’t enough. On Tuesday, Brett was at the Dr. and given the diagnosis of Acute Bronchitis, likely the start of Mycoplasma Infection. He was given a Steroid and an Antibiotic Shot to try to ward it off as well as scripts for  Oral Antibiotics and Steroids. Thursday morning it became apparent that he was not going for surgery on Friday. Now that it was established that he had Mycoplasma, surgery could not be scheduled for 6 weeks. So Brett’s surgery has been rescheduled for mid May.

The whole house ended up with Mycoplasma, and that stuff was brutal for Brynn and Brett. Pretty mild for everyone else, except Abigail’s ear infections. Brynn’s seizures were irritated by being sick. He was given oral antibiotics, as he cannot take steroids due to psychosis reaction to them. He is returning back to normal baseline now, and for that we are thankful.
Brett is also doing pretty good now, his asthma reared it’s ugly head but seizures have returned back to his baseline already. I will keep my eyes on the road, keep my heart on the goal and keep moving forward!                                                             

We were working today on adding and subtracting fractions. It was wonderful to see that “Aha Moment” in Brynn, when he beamed as he said 1/2 + 1/2 = a whole!  It has been a while since I got to see such a big Aha Moment in him, very refreshing after such a bad few weeks! I have been doing the Sequential Spelling with them both again. Brett has no problem in Spelling except those “little sparks” that make him write the word wrong when he knows how to spell it. Reading

is an issue as his eyes will not work the way they need to, likely a result of the Convergence Insufficiency and his Occipital Lobe Epilepsy strong focus fighting to keep him from being able to see correctly. Math seems to cause Brett to struggle most, especially once he looses focus or gets frustrated. Comprehension is good when I read to them both. Brynn is still struggling in Reading, even at an early second grade level.

I suspect that his Convergence Insufficiency may be the root cause complicating his lower IQ and Cognitive Disorder NOS. He knows some bigger words by sight from memory, but really doesn’t seem to have the memory and processing capabilities for much higher “Fluent”  reading. He does perform well at the 3rd Grade Math level, verbally and working in group, as long as we stay in the same area long enough and revisit often. I think we will stay on factions for some time now… with some multiplication mixed in! It is working well to do Brynn and Brett’s home School together. As for the circles I seem to be going in, I have accepted that at least for now this is just how it will be. I can make changes to better the experience. If I am going to go in circles, I want them to be filled with as much love, peace and joy as possible! Here’s to more of those things for our family!            

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