Maintaining in maintenance

Hi, Team Naaman. Our little Cheeky is chugging along maintenance. No ER visits since that pulled NG tube on 7/3.  We have been busy with appointments (more on those) and a hefty load of home chemo, not to mention he still needs continuous feeds. Nonetheless, we feel weird not having been to Smilow this week.  His next visit is Thursday for a counts check.  Believe it or not, Naaman is asking for specific friends and staff by name, and even hurled himself on the floor screaming “CLINIC!” when I told him we weren’t going until next week.  Smilow family, know you are loved.

The other appointments. Naaman was referred for a Birth to Three evaluation to be sure his development is on schedule.  He was evaluated back in the fall, and everything was at least average range, and this eval showed the same great trends in development, with the exception of his set-backs in eating.  We had an Individual Family Service Plan (IFSP) meeting and decided on consultative services to help Naaman out.  Truthfully, the OT and SLP already think we are doing all we can to help him get back to normal eating, and like most things, we just have to ride the wave of his nausea.  Still, a little consultation never hurt, and hopefully some good ideas will come up.  In addition, Naaman was referred for OT/PT evaluations at Yale New Haven outpatient.  As far as OT, he is on target, again with the exception of feeding, but no direct services were recommended right now. He will however need PT to work on weakness on the right side and for the tightness in his ankles, a common side effect of his chemo drugs.

Lots of chemo meds at home, lots of work to keep the moods in check, lots of missed summer events, and being hooked up to a feeding pump all day isn’t awesome.  Still, all things considered, Naaman is doing well at home and we hope to keep it that way.  Be well, Team Naaman, and don’t forget your sunscreen out there! 

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