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!!

1 comment:

  1. I will keep praying for her continued improvement in all areas! She is such a strong cute little girl. She will go far in life! Every time I hear her giggle or talk I get a smile on my face and in my heart. She is so precious and God is with her through this journey. Mary T.