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March 14, 2005 -- OT visit #0 Almost 1 month OT Katie had her first OT appointment today!! All of her testing went well. She had an echocardiogram, EKG, urinalysis, CBC with differential and liver panel, and EKG holter for 24-hour monitoring of her heart. Her ANC was over 1400, which is good. All of her other blood counts were in good ranges. Over the past month we have noticed increased energy and rosy cheeks!! Things that we haven't seen since months prior to her diagnosis!! Her balance on her left leg is still minimal, she still has difficulty jumping with two feet at once, and going up and down stairs one foot at a time. If there is little improvement over the next few months, she will need physical therapy. We hoping this is just the vincristine and steroids still hanging around in her system, and not neurological damage. Time will tell. Katie has an eczema-like rash covering her face and scalp which has been very itchy. We are treating it with Aquaphor and hoping it's just the winter months drying her skin. Again, time will tell. We noticed a tubular-shaped bulge on her neck where the port tubing was. I'm concerned that some material may have been left behind when she had her port removed. Interventional Radiology is certain they got everything and said it is most likely scar tissue from having the port in for so long. Dr. Julie will be keeping a watch on it and may order an x-ray just to be certain everything was removed. Katie will continue to take her Bactrim for the next few months. She returns for a CBC on April 19. She will have a full physical with her pediatrician in August and get the immunizations she is behind in. Katie will continue taking her swimming and gymnastics, both of which should help her regain some of her strength. The Kisses for Kyle Foundation is throwing Katie an off-treatment party which will take place this Wednesday evening (3/16). It should be a really fun night!!! We really appreciate the kindness Kisses for Kyle has shown our family!!! It is a wonderful organization that cares so deeply for families with children living with cancer. For more about Kisses for Kyle, you can look on Katie's web site or got to http://www.kissesforkyle.org/ We thank you all from the bottom of our hearts for the love and support you have shown our family. We hope you will continue to keep Katie in your prayers. |
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