Wednesday, June 30

Collin had his first outpatient OT session today. He responded to and interacted with the therapist very well. She reviewed his history and had him do different activities so she could assess him and his abilities. Then she used play to get him to work on various skills. There was a play kitchen he kept pointing to, so she got a small bench for him to sit on so he could play with the kitchen. He used both hands to open the different doors, and to reach to pick up or put down the toy food. He even tried pulling himself up to stand a few times so he could reach better. The therapist gave me some suggestions of things to try at home to help him continue to work on skills. After the therapy session, we made a quick stop at a store on our way home. It was there I realized that my kid was being stared at by other kids, and even some adults. Thank goodness Collin is too young to realize that he's different! This afternoon, Collin was easily frustrated, which was made worse by the fact that I couldn't understand what he was trying to communicate. I think now that he realizes he can't just get down and play on his own, his frustration is bound to increase.

We also got the feeding bag extension dilemma taken care of today. The insurance company had initially approved four extension kits; each kit is just twelve or twenty four inches of tubing; they can be cleaned and used again for a week. We asked how much it would cost us to pay for more kits if they weren't covered by insurance. The twelve inch kits were $46 apiece, and the twenty four inch kits were $48 apiece. Yes, that's just for a length of tube. Then I asked how much 30 more feed bags would cost; they were $12 apiece, or around $360 for a box of 30. It's cheaper, less work, and more extension length to get extra bags and cut the tubing like I've been doing, so that seems to me like the logical way to go. The home health agency was going to work on getting insurance approval for more extension kits; meanwhile Bill looked online to see if we could get the bags anywhere else for less. He found them on Amazon for $122, and then on eBay for $60! Needless to say, he ordered them right away (from eBay). Then I spoke to our social worker from the hospital. She is going to check with our supplemental insurance tomorrow to see if they'd cover extra bags, and she told us the Four Diamonds Fund (for local children with cancer) will reimburse us for the eBay purchase of bags. After all of that was figured out, the home health agency called back to say they got the approval for more extension kits! So, we should be in good shape for a few weeks. In the end, I'm just left wondering why the manufacturer of the bags doesn't just make the tubing longer in the first place, to improve the quality of life for those who have to be tethered to a pole for twelve hours?!?!