Saturday, January 2, 2016

Let's try some Change

     Although it's been over a year since I have written on my blog, it doesn't mean that we haven't been having our challenges with Kamiree.  She has came so far, but we have had a pretty big set back that started in October.  Kamiree went from having a few "episodes" of being out of control every couple weeks to having at least one maybe two every week.  This scared me so I called the neurologist where he told me that we would do an EEG but it sounded like something outside his field.  We did the EEG and it came back she was having abnormal brain activity about 60% of the time even with her pills so the neurologist suggested we back down on the pills since really they aren't doing anything.  We did go down to four pills of lamictal a day, but the moodiness and the ability to control herself after a certain point is still happening.  Have I ever mentioned how I hate Landau-Kleffner Syndrome because of all the unknowns still?!?  It's so frustrating that there is no medical protocol for Syndrome yet, just a guess on everything!
     We have also been struggling with what school to have her at.  This Christmas we have decided to pull her from Rocky Mountain Deaf School and try to put her in the school with the rest of the kids.  The ultimate goal for us was to get Kamiree at a point where she could function in school and be at grade level and then move back to Wyoming.  Speech would be something that was important in this process and she thankfully has it!  She needed sign language to be the connection for her speech and now it is time to move on.  She is excited to start the new school and honestly it is not going to be easy.  She is behind in reading and writing still since she wasn't even talking at 5 so we know she will have to work hard.  If this happens to be a horrible move and we need to put her back in the deaf school we are not opposed to that.  We just thought we might as well see if she is ready for this next step or not and now seems to be the time to try. 
     Please continue to pray for our family as little decisions like this cause a lot of sleepless nights because we want the best for Kamiree, and all of our children for that matter.  She has worked so hard to get to this point so the last thing we want is regression of any type.  The overwhelming feeling of making sure we make the right decision for her is so heavy on our shoulders they feel like they are going to break.  It's times like this I am glad that we have God to give all our troubles/fears/anxiety's to. 

2 comments:

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  2. Change can be a bit painful at times, but often the biggest changes end up producing the most beautiful outcomes. Kam is so intelligent and courageous. I am left with little doubt that she will succeed. God certainly has grand expectations for this little lady! Look at how far she has come and how she is budding! That is incredibly reassuring. When I see her videos with sign language, singing, etc. you can see her passion. We will continue praying for peace, courage, motivation, and direction. It is HARD when you don't have all of the answers! Our Heavenly Father does though. Lean on him during your times of frustration...let him lighten your load. Jer. 29:11 is my go to verse for times that appear to be overwhelming. God has got this! Love you all, be blessed!

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