One of the ways we are preparing for Daniel’s surgery is to take him off some of the regular medications he has been on. He has been taking a muscle relaxant for some time and this has had to be stopped. He has taken another medication for itching which has also been discontinued. Both of these are also sedating and have helped Daniel (and his parents) sleep at night. Removing the muscle relaxant has significantly increased Daniel’s spasticity and caused quite a bit of discomfort at night. He cries out, moves around a lot, grinds his teeth and wakes up quite early. He is not getting the sleep he needs and neither are we. Often, he needs me (Mom) to lay beside him, rub his legs, and help him relax, sometimes by holding him or just trying to sleep beside him. Neither of us does well without good sleep.
Another significant challenge relates to Daniel’s behavior. We have found that the more Daniel is in discomfort, the more difficult his behavior is. We are seeing a ramp up in challenging behaviors in the last several days. I would love to say that we are mature enough to handle all this without getting ruffled, but that is not the truth. It is hard for us to deal with his defiance and outright disobedience over and over again without getting frustrated.
Finally, he is eating very little. Whether this is because it is summer, it is hot and exciting things are going on, or because he is in more discomfort, it is hard to say.
For those of you on Daniel’s prayer team, we would ask that you join us in praying about these challenges. The absence of the medications is complicating our lives, but it shows us the real effects of Daniel’s cerebral palsy and why he needs this surgery in the first place. Thank you for upholding our family. We are grateful!