My Story

My name is Kynslee Rose White. I have had a rough start battling neutropenia, hypotonia, delayed motor skills, and feeding issues. I was diagnosed on my 1st birthday with fumarase deficiency. I have had so much love and support from so many people. I hope that this website can help keep everyone that cares about me informed. Thanks for visiting!


Journal

Tuesday, June 16, 2009 11:35 AM, CDT


Kynslee is doing good.  She had a stomach virus last week, but is over it now.  She is back to smiling a lot.  I think that the increase in her medicines has helped.  We can now put her in her stander up to 3 hours a day.  Her legs are incredibly strong.  Still working on her upper body strength.
We have lots of appointments coming up.  She is getting some more orthotics for her feet.  Her left foot turns really bad.  We are getting her a splint to keep on her foot throughout the night to see if we can straighten it back out.  She is also getting more orthotics to support her feet during standing. 
 As far as therapy goes, we have placed Kynslee on the waiting list at Eastpoint for therapy after she turns 3.  We also have an appointment next week with the people in charge of first steps.  They once again did not approve some of Kynslee's therapy that we are asking for.  We will now go to the final step where we have  a personal meeting with them.  She is only doing physical therapy twice a month now.  This is okay with me because I think that we have plenty to work on inbetween.  Speaking of, she has PT in about one hour, so I have to hurry.
I also wanted to let everyone know that if I don't go before, Kynslee's little brother should be coming on July 8th.  We have offically set my induction date.  During yesterday's ultrasound, I was 35wks 5 days.  He weighed 6lbs 9oz.  Everything looked good.

Hope everyone has a good week!


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HOSPITAL INFORMATION

Kosair Children's Hospital
231 E. Chestnut Street
Louisville, KY 40202
United States
502.629.8060

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E-MAIL AUTHOR

janell630@yahoo.com