Tuesday, August 5, 2014

About Last Week

     Last Tuesday, Kerstin had another spinal fusion follow up appointment.  Everything went well, really well.  The fusion is going well. Kerstin is healing, the screws and rods are in place. There were a few questions for the doctor.  

     Lately, Kerstin has been drawing her left leg up excessively and it appears that stretch marks are coming because of the constant pull or bend.  She also hangs this left off the side of her wheelchair. Hanging leg off the chair is pretty much a comfort thing.  Since Kerstin is not a walker, her kneecaps are not in place as they would be had she been a walker.  Doctor Killian informed us that there has not been a successful surgery that would be worth performing to correct it.  

     The dysplasia of her right hip has not changed, there is no arthritis there or in her knees.  Always a good sign, and I'm very thankful for that.  Even better, he tells us that Kerstin is done with orthopedic surgeries!  He will continue to watch her hip, but as he stated "she's done with ortho stuff"!  That was great news because on July 23, 2013 at her follow up from the bilateral triple arthodesis (fun to say), we found out that the curve of her spine had increased to the point of needing surgery. This appointment, all great news!

    We are still waiting on the new wheels to come, should be approaching any day now.  She is snug as a bug in her current chair.  Kerstin's physical therapist sent a letter to the doctor requesting that Kerstin get a Hensinger neck support.  She's been tilting her head a great deal since the surgery.  Brenda (PT) said that when a child has scoliosis, they tend to tilt their heads to compensate for the leaning that is caused by the curve.  Once surgery is performed to correct the back, they still have the head tilt.  The neck support will help to strengthen muscles in her neck and hopefully, she will eventually hold her neck/head up better. 

Hensinger Neck Support

     We also got a prescription for a Tumble Form chair so that Kerstin can have another seating arrangement when she's at school, that's not in her wheelchair.   There was a beanbag that she had access to but, pettiness with/ from school leaders/administrators changed that.  The beanbag was flattened within weeks of the last school year starting.  Larger children that have mobility and limb usage had access to the bag and it became of no use for Kerstin in it's pancake like state.  She had a Tumble Form, but quickly outgrew it after the spinal fusion stretched her, no complaints there. 
Large Tumble Form

X-Large Tumble Form

Tumble Form chair with wheels.

     So, Kerstin will continue therapy! Follow up with orthopedic specialist only if/when needed until next scheduled appointment.  Lovely!!!

More to come...

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