"Do I have bed head?" Kara asked this morning. It didn't used to be the hairstyle we were going for, but for a girl coming back from chemo who now has enough hair to be messed up in the morning, it is a beautiful thing! Started the day with a smile.
We went to Kara's team meeting for rehab on Friday, which takes place about every 6 weeks and reviews Kara's progress and goals in therapy. The top of the report has the patient's goals, and Kara's stated, "The patient wants to be able to run so she can chase her brother." Sounds like a good goal for a 6-year-old girl! In addition to her usual OT and PT which she goes for on Mondays and Fridays, starting tomorrow she will have an extra hour of special therapy called IM on both days. IM stands for Interactive Metronome (www.interactivemetronome.com) and it is supposed to help with motor coordination and processing time. The therapy team also suggested that Kara have a speech therapy evaluation. She has no problem with her speech, but they thought ST might be able to suggest some strategies for school or things we could work on at home. We are very grateful to all the people who have helped to rehabilitate Kara and make her the best she can be. She is a joy to be around and we are thankful every day.
Even though Kara has completed her treatment protocol, we are still busy with appointments. Not complaining, we'll take working on long-term issues any day over focusing on the next chemo cycle, blood counts, transfusions and multiple medications. It feels so good when they ask us what medications Kara is on to report "none". That may change in the future, as Dr. Walter predicted at our last appointment that he feels Kara will be on one or more hormonal supplements (possibly thyroid and growth hormone) within the next year. Time will tell. So far, we've only seen an endocrinologist in Boston, but Dr. Walter suggested we get a local one. So in addition to bloodwork, hearing test and reading program in July, Kara will have an endocrine eval and functional visual exam by an ophthalmologist in August. Whew! Tiring just thinking about all that stuff, but as I said, we are happy to be at this point and we'll take it.
Sean started his summer basketball league last week and really enjoys it. We are all getting psyched up for our family trip to North Carolina to see MomMom and all our family and friends down there for a great 4th of July long weekend. Wishing you all the best as you celebrate Independence Day, which holds extra special meaning for us this year.
Love, Bonnie
