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Welcome to Payton's Web Page. It has been provided to keep family & friends updated about Payton's journey with OFD Syndrome Type 1, c-ACC and PKD.
Journal
Tuesday, November 7, 2006 2:05 PM CST I know, I know...what took so long! Finally found some time to add some new pictures. Here are the kids with the pumpkins we carved for Halloween! Check out the photo section for some other pics from Halloween.
Payton had fun trick or treating this year. In past years she just stayed in her stroller but this year I thought she might enjoy going up to the houses. So we went around my neighborhood with the wagon & Payton got out each time. She walked up to each door and said "trick or treat" with Tucker. She thought it was the funniest thing! She would say "thank you" after each time too! She did really well and I was very proud of her.
Then we went over to Daddy's house so we could trick or treat with him & the Green's & LeFave's. Payton was very excited to see all the kids dressed up! We went around for another hour or so. It was a chilly night!
Not much new on the medical front. Her nightly BP readings have been high the last week or so. If that continues this week I'll be faxing in her BP log so the Doctor can take a look at it. They might have to increase her ace inhibitor if it's not keeping her BP lowered. She has grown quite a bit in the last 4 months so it just could be that she needs an increase in her dose.
Payton will be seeing a new Dr on Dec 9th...Dr Ward. He is a rehabilitation doctor who runs a Gait Clinic. Dr Ward, along with a Physical Therapist will be assesing Payton's gait(walk) to see if she would qualify to be sent to the Gait Clinic. We've gotten different opinions on whether or not Payton needs to be wearing her SMO's (ankle braces). Her ortho dr says she doesn't need them but the PT at school says she does. So we don't know what we should do. The PT at school suggested that we get another opinion from Dr Ward & see if Payton could get into the Gait Clinic. She definitely has issues with her walking...very unsteady, her balance is off, her gait is not normal, she's dealing with a leg length discrepancy plus a severe pronation (she walks on the sides of her feet). All of this makes it difficult for her to walk. So we are hoping this Gait Clinic can figure out what things we need to do to help her gait.
No surgeries are in the immediate future. She will need her palate repaired again as it has a hole in it again. And she will need a revision on her lip as well due to all the scar tissue build up. But we are in no hurry to do this. Maybe Spring break or summer break unless something comes up that would cause it to need to happen sooner.
Take care everyone!
Christine
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