Wednesday, September 25, 2013

Starting a New School Year

Thank you for your continued prayers for my Katie! She is doing amazing!! It has been 10 months since she was diagnosed with epilepsy. My heart still hurts. But I am thankful, every day I am thankful for Katie and her journey. As much as I wish she didn't have to take medicine 3 times a day or worry about more severe seizures or have to fill out the extensive medical forms and so many doctor visits; I am thankful. The seizures she was having at the end of last year have done amazing work of some kind in her brain to  start triggering, rewiring and stimulating her brain in unbelievable ways. Even a few months ago she couldn't tell me anything about her day at school. Day in and day out she said, "I goed on bus. I ate snack." Already this year she is able to tell me names of kids and some insights to life at school. She helps the new kids in class by helping them to where they need to go or holding their hand or showing what to do by example or by simply bossing them around. She is adored by her teachers and the other children look forward to seeing her.
Katie still has a long ways academically to be age-appropriate, but the fact that she has learned shapes and colors and a few letters is a sign that it will come when her brain is ready and able to process the information.

The biggest negative impact of the epilepsy is the weakening and lack of coordination in her left hand. She had just graduated therapy when she got sick. (For those that don't know Katie had a stroke in utero, she has severe brain damage, she has a VP shunt, visual impairment and left sided weakness. In November of last year Katie came down with a nasty virus that triggered something in her brain that caused her to start having seizures.) So, Katie is re-graduating from physical therapy because her gross motor skills are great! She still has 3 Occupational therapies per week to address her left hand. She lacks the ability to supinate her left hand, in other words, she can not rotate her left hand to put her palm up. She uses her left hand often, but it is awkward and weak. She has one vision therapy a week at school. Katie's vision seems totally normal at times, but in a new and unfamiliar environment her vision deficiencies are apparent. In a new place she has difficulty identifying a person 30-40 feet away. But on a typical night at home she can point out the moon in the sky. It varies mostly in unfamiliar environment and with movement. Her eye shaking is called nystagmus and may effect her vision some, but mostly her vision pathways in her brain are damaged. This is why glasses won't help because her eyes see everything correct, but between her eyes and brain the picture is blurred.

We are thankful for many, many countless things!! So as you pray for Katie remember to thank God because her progress is a miracle!! Current prayer requests for Katie are- supination of her left hand, strength and coordination of left hand, continued academic progress, and her vision which is difficult to measure how much it is effected and is inconsistent between environments and situations, and a life-long prayer request is that she shunt will continue to work properly. Every time she complains of headaches for more than a day or throws up or is acting off like she doesn't feel well in the back of my mind I wonder if there is something going on with the shunt. So, there is always a need for continual prayer for a properly working shunt and no infections, since anytime there is a foreign object in your body there is a on-going risk of infection. Also prayers for self-control for Katie and that she would sleep through the night at least 5 nights a week. Sometimes she makes it to 5am before coming into our room, but often I may put her back to bed 1-2 times per night and every morning by 6:30am she is sleeping in our bed and wakes soon after. She is an early riser, but at least she is happy at 6:30 every morning. I thank God for her feisty attitude that has gotten her this far and her joyful attitude that puts her into the heart of SO many people!! Thank you for all your prayers!!
Thank you!!
Thank God!!
Love you and treasure you all!!

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