Tuesday, September 16, 2014

Prayer Requests September 2014

Today's prayer requests- continued improved vision- she is no longer legally blind (Thank you God for answered prayers!) yet still can't consistently see far away, it takes a lot of focus and concentration to watch tv from the couch and watch shows or parades or observe life in distances of 20plus feet. 
Her left hand- seeing it every day it is hard to see the improvements, but last year she had to concentrate so hard to open and close her hand, if she worked it too hard, releasing her grasp on something would be a fight. She is using her left hand without hesitation now. We accept she may not have fine motor control with her left, but we also know with confidence that God has granted us many requests, so pray that her hand continues to gain strength and control and functionality. 
Attitude- she can be extremely difficult to work with in school and therapy and home. If she doesn't want to do something whether it is therapeutic or necessary she can throw a tantrum to end all tantrums. We have learned to pick battles worth fighting over. So please pray for more cognitive reasoning skills of what is good and necessary. Simple things like brushing teeth can become a battle of 5-10 minutes of screaming, crying and restraint for 30 seconds of the toothbrush in mouth. Getting ready for kindergarten will need to be more smooth as well as assignments in kindergarten next year can't be fought tooth and nail. (Her sweetness and joy far outweigh her serious feistiness, but her lack of being able to reason with is becoming more problematic.)
Her cognition and school readiness- nothing to worry about yet, but prayers appreciated.  With hundreds of therapies appts and a year and a half of school Katie can't successfully write her name. A few letters are staring to emerge. Even tracing her name is so difficult she shuts down quickly. She has immaturity in general and with social skills and understanding. She is a leader without a doubt, but needs to have some flexibility and openness while playing with other 4-5 year olds. She screams, pouts, hits and fights with anyone who doesn't want to play the way she does. I want her to be her and I want to respect her love of attention, direction and leadership, but reality is to be a good friend requires compassion, mutual respect, compromise and understanding. 
Her swim lessons have made leaps and bounds in the last 9 months. She went from crying and screaming in the water to swimming. Yes my daughter is starting to doggy paddle. For most 4 year olds a 2 week class would teach them the basics and  maybe within 2-6 weeks they could swim as proficiently as Katie has learned in 9 months. But for Katie with her left sided weakness she has to seriously focus and think about using her left side. With the amount of concentration and exertion she does while swimming her left side wants to posture and lock up stiff as a board. She has to fight against her own body to move especially her left arm. But she can swim several feet, but she has to focus and work very hard. Pray that she can continue to improve and that swimming becomes more fluid and natural. Pray that she becomes truly and consistently water safe and that her strength and coordination flows over into other areas. 

Saturday, June 28, 2014

Katie almost 4 and a half years old!!

                   It has been way too long since I have written an update! In general that is a good thing because there is no outstanding reason for prayer. Yet, I have meant to write since she turned 4 years old in January.  Well, here is the very latest.
      Katie has met most of her goals for the last year. She is doing well at school and in therapy. We do believe that the virus that she had in November 2012 was a polio-like virus that has re-damaged her left side extremities. Her left leg has regained strength and is doing great! She will have a different gait, but she has no problems with tripping regularly any more. Her left foot and toes have not regained as much strength, but haven't been a problem unless putting on boots because she can not lift or wiggle her left toes. Her left hand has never returned to where she was before she got sick.  Katie can not supinate her hand (put her palm up) and has poor control over her left fingers and thumb. The lack of improvement is discouraging after over a year and a half of multiple therapies per week. So, we are accepting that her arm may never return to full functionality, but we will continue to work hard, encourage use, and pray for full function. 
Katie's cognition is age appropriate and she has another year of growth before she enters kindergarten. Her neurologist and neurosurgeon are impressed with her growth of speech and cognition. They said keep up the good work and therapies. She has being seizure free for a year and Dr. Gurbani said that it is 80% of the journey. Now the next 2 years are the last 20% before she is weaned off her medicine. Yay!
Katie's social skills could use some prayer as she continues to learn how to play well with others especially when they don't want to play what or how she wants. 
Katie has been taking swim lessons since the beginning of the year. They are going great! The latest lesson has been to doggie paddle which is extremely difficult with her left arm, but she is doing great and working hard!  She has an amazing group of instructors at Fast Swim School in Fullerton. They teach her, coach her and love her! They go above and beyond to learn how to adapt to her disabilities and make lessons about swimming and therapy. Pray for continued growth and strength!
She enjoyed her horse back riding lessons she received for her birthday! She was extremely stubborn at times for her exercises, but overall enjoyed the horse and riding.
Katie's vision has seemed to be improving. Keep praying!! It is amazing to be overwhelmed when she points out Johnny's old pre-school while we are driving. Something so simple is so wonderful!! We see her ophthalmologist on Monday to get an idea where her vision is now, so I will have another update in a week.
My day care business is doing wonderful with life-long customers and friends and word of mouth customers. I am full and as busy as can be! This is great overall, but it has been hard as I can no longer take Katie to her therapies. But I am extremely thankful for my dad who has made everything possible since his retirement! (Thanks Dad!!)  This is hard on my heart, but I am overwhelmed with amazement for her progress. My eyes fill with tears when I watch her run, jump, climb, swim and live life with such joy! Thankfulness overflows in to every corner of her being, her life and our family's lives!

Our current prayer request comes from our Friday visit with the orthopedic doctor Dr. Lau. It is usually an uneventful appointment. He looks at her left hand, watches her walk with and without the brace and says keep up therapies and wear the brace often. But Friday he brought up something new. Dr. Lau referred Katie to a hand surgeon to look into if Katie is a candidate for surgery that would improve her left hand's ability to supinate. Fear is our initial reaction, but I agree after a year and a half of therapy other means may need to be considered. So, we have a consultation on Wednesday with the hand surgeon and will know more after that. Pray for wisdom all around, for us and doctors, and what is best!
    But lastly I have to share my God moment from today. At a birthday party another parent, I had never met before, struck up a conversation about how fearless Katie is.  Since her awkwardness stands out to me I told him she has cerebral palsy and that she is an active brave girl. He tells me he knew she had cerebral palsy and continues to tell me a frighteningly similar story to Katie's.  He has cerebral palsy affecting his right side from lack of oxygen at birth. Then at around 5 he had a fever that worsened his right side and he eventually had surgery to improve his supination on his right hand.  I started to tear up as I told him that our Dr. had suggested that surgery yesterday.  He said that the surgery made a significant difference in his life. He is a dad of 3 kids, fully functioning and only after he told me could I see little indicators of cerebral palsy. So, that God moment will never be forgotten especially as we meet with the hand surgeon. Please continue to pray for wisdom and direction! Pray for Katie's left side and vision! Pray for all of us too!  Yet never forget to give thanks for her progress and her joy and Katie herself!!  Thank you!!  Thank you!! Your prayers have made a difference! My thankfulness can never be expressed enough!! Thank you!!