Thursday, August 23, 2012

Lots of Change

Well, we are officially living in a new state, new house, new smell in the air, and a new vision for our family.  We have lived in Colorado now for about 2 weeks and still very much getting used to it.  It seems like we are in the car all day long running Kamiree to school, speech therapy, hippotherapy, and my least favorite, doctor appointments.  While I knew that moving here was basically for Kamiree, we are trying to balance some other activities for our other children to make sure they feel loved as well.  This is such a huge task with 5 kids I feel like screaming.  The last thing I (we) want any of our other children to feel is unloved.  The other 4 drive with me to all these designated areas, including a half hour in both directions for her speech therapy with at least 45 minutes sitting in a waiting room.  They are great kids I have found out in these past 2 weeks, because a lot of kids couldn't do that day in and day out and they do...thank God for iPads! :)
Tuesday we went to Kamiree's neurologist to find out the MRI results as well as a game plan for her electric activity that is occurring in deep sleep.  Thankfully there was no tumors found or any other abnormalities.  But, he did think that she fits the description of a child with Landau-Kleffner Syndrome (which only about 250 kids have ever been diagnosed with since 1957) While this didn't surprise us a lot, since I had been researching it since Omaha where they said it might be, it still hurt.  The neurologist has decided to start her on Keppra and then do an EEG at the end of October to see if it has stopped the electric activity.  If not then on to the next drug.  Basically, LKS will either take her speech forever or she can moderately get it back, or get full language back.  While getting full function back is basically slim to none chance.  We are trying to stay optimistic, but I will tell you this week has been a huge blow.
After this appointment we headed to her speech therapy appointment where her speech therapist confirmed that she believes she has aphasia as well.  LKS does cause this, so again not a huge surprise BUT this means we have a right sided deaf LKS apraxic daughter.  I just feel like the waves are getting bigger...we are in a middle of a storm.  Each day we wake up and we are still in the middle of the ocean...I just want to see an island at least!!!!!
This being said...we are not giving up!  We have Kamiree in private speech everyday as well as her having it 2 days a week in school.  We put her in the deaf school here so she is learning sign language, which apparently is not affected with this syndrome in 40% of cases, and learning how to communicate.  Our speech therapist said it right when she told me yesterday, "Shiree you have to expect she is going to come out of this and talk or there is not a goal."  That's all it took for me to get over this pity party that I so want to stay in.
Chris loves his job here, I love the opportunity that is available for Kamiree as well as the other kids here, and so this is our new life.  Please keep praying for us!!  We miss Thermopolis immensely!  I miss my friends so much, life is lonely here.  But, the goal is what keeps us going.
That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong. 2 Corinthians 12:10

2 comments:

  1. Shiree, you are an incredibly strong woman. God, of course, knew that when He allowed these challenges. He has confidence that you and Chris will handle this with faith, peace, and competence. You're doing GREAT!!!! I'm so glad to know you put Kamiree in a signing deaf school! Your whole family should learn ASL as well. To make it fun, get the Signing Time dvds (we love those shows!). ASL is one of THE most useful things for all people to learn, not just people who need it to communicate. I pray the peace of Jesus on you and your family!

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    1. Thank you for your encouragement Michelle! Her school actually has ASL family classes on Monday night so we will be doing those :) A lady in Wyoming came and did lessons with us for about 30 lessons and we have Signing Time DVD's so I hope so much we can learn quickly!! Thank you again for your kind words and prayers!!

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