Tuesday, October 8, 2013

First Visit at Shriner's


Let me just start by saying that we love Shriner's Hosptial!

Our appointment was at 8 am and we finished up at noon.  Whew.  Long morning but we accomplished a lot.  After check in and about 100 medical history questions I couldn't answer we were sent to radiology for X-rays and patient photography so they could take pictures of his little body. (This was his least favorite part because he hates being undressed except in the tub.). Then back to the clinic to see the OT (occupational therapist).  She gave Lukey lots of praise over the many things he can do. She also took lots of measurements and explained that she wants me to do wrist stretching exercises. As she stretched his wrists she was able to go from his resting 100 degree angle to a 30 degree angle.  This was very encouraging.  He has no muscles to keep it there or do it himself but right now it's all about flexibility.  She was very encouraging that he can learn to do buttons and tie his shoes in his current position but also that the position can be improved.

Next, we saw Dr. Goldfarb and his entourage.  He is a kind man who first asked how Luke was adjusting and learning language.  Then he said that while we may not be able to do the full correction there may be surgeries that can improve the angle in stages.  The concern is that he has been using his pinky and ring finger for so long that he may not want to use his pointer and thumb (assuming we choose to create a functional thumb). We will start with splints at night to stretch the soft tissue.  We will also try the splints during the day to see if he will use his other fingers when his arm is straighter.

Next, we went back to X-ray to make sure his spine is straight and to photography to video Luke stringing wooden beads on a shoe lace.  The doc was so impressed with how he has to taught himself to use those last two fingers that he wants to use the video for teaching purposes and for his hand surgery blog.

Finally, we went up to the OT lab to make the splints.  This OT is like he MacGyver of the medical field.  She made plastic splints molded to each hand.  I mentioned that I had been trying to come up with a solution for protection for his ulner "stump" that he always falls on and scrapes up.  She made a quick foam wrap that he can wear when he rides his bike and scooter.

We will go back in December to check in with all the departments. Everyone we met today was so kind and knowledgable.  We love Children's Hospital but they may see a couple of these cases a year and Shriner's sees them every Tuesday (hand day at the clinic). And it really is free.  We don't pay a single penny.  We will be giving a nice donation when this is over!

In other Krosley news...

Rob (senior at Anderson University) played an alumni reunion concert with Sandi Patti, the Gaithers, John McLaughlin, Tenth Avenue North, Sidewalk Prophets, Alanna Story and Christa Wells.  So cool!

Lauren is settling into her first year at Lindenwood University but is able to come home often to see Luke...and the rest of us. ;)

Katherine is a very busy girl conquering 8th grade and loving St. Louis Children's Concert Choir and leading worship at youth group.

Andrew has settled into 4th grade and big brotherhood.  He is doing so well with Luke.  They are now sharing a room full time and it is going swimmingly!  Praise God!

Thank you all for blessing us with your prayers.  They have been powerful  and effective!

2 comments:

  1. Pam, I have kept up w/your journey w/Luke from just a bird's eye view - - WOW! Such a courageous little boy....and what a completely wonderful family he has with all of you!

    As a nurse, it's always interesting to me to hear about individual's medical related issues & it sounds like you've been led to the perfect place. Dr. Goldfarb has a stellar reputation, as does Shriner's.

    Luke is such a cutie!!! Thanks for all of the updates & letting us peek into your family's world! Heartwarming!
    Linda Schwieger

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    1. Thanks, Linda, that's so sweet. We are definitely enjoying life with Luke!

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