I am going to preface this post by saying that you don’t have to agree with the decision we made. But you do have to respect our decision or at the very least us for making what is an extremely difficult decision. It was NOT made lightly and took us weeks to get to this point. As we have all heard time and again – if you have nothing nice to say, keep your mouth shut.
We have once again hit “that time” of year – follow-up appt time. The next several weeks will have us visiting all of Gav’s specialists to see how he’s doing, where he’s improving and where we still need work. We literally have an appt a week until the second week in June! This is also the time of year that early intervention does their review of how he’s doing and makes plans/sets goals for the next six months. During his informal review on Tuesday, we saw that while he’s doing very well – and excelling with his cognitive and social development – he’s not doing so well with his motor development (no surprise there – he’s got CP!) But there are concerns that his motor development may start to hinder his cognitive development and that of course is a problem.
This morning kicked off “that time” of year with a visit to what I call his “medicine doctor” (the doctor that will prescribe “the big” medicine to him) and we addressed the concerns of Gavin’s therapists. He agreed that this time is crucial for all levels of development and that we can’t have him excelling in certain areas and “drowning” in others – there needs to be a better balance. So with that, we have decided that Gavin will be starting on diazepam (aka Valium).
He will be on a VERY LOW dose and honestly, it will be trial and error to determine the correct dose for him. The idea of the medicine to help him relax to start gaining control of his muscles, strengthening and learning to use them in a different way than he has been – but not to make him “Prince Valium” (Space Balls reference – look it up for those that don’t know it!)
Kate & Colin,
I admire your strength and resilience in having to make all of these decisions for Gavin. There are no wrong answers, only those you feel are the best for him, and only you know what they are. Jim and I will be back in CT in early June and look forward to seeing the family. I will call you then to see if and what I can do to help with your daily routines. Take care.
Kate and Colin, I don’t see how anyone would/could question your decision. Whatever you have decided (or will decide in the future) I know is done out love and with input from his medical staff. There are no easy answers; parents know best, but what a hard decision to make! I so admire your courage and determination. He’s a lucky little guy to have you as parents.
I’m keeping you in my thoughts and sending hugs to all.