Atlanta Dr Day 2

Well, the first appointment with craniofacial lasted all of 5 minutes. Long enough for him to say," I'd like to refer you to an oculoplastic surgeon here. He will know more about the eyelids muscle than I do, and he's really good. Unless, there's one at home?" Probably... pediatric? Ha! So, he gave me the number of Dr. Walrath to set up an appointment with. Pretty much what I expected from this appointment.
On to the upper extremities, Dr. P... We were presented with 2, really 3, options for his elbows. 1. Splinting- We've exhausted that option and seen no results. 2. Serial casting- This would mean getting a new cast each week with an increase in stretch. We did this with his feet as a newborn, and it give some stretch. However, weekly trips to Atlanta for cast changes doesn't really excite us. We could find someone at home to do it, but I'd much rather have one doctor overseeing it. We have a lot of confidence in Dr. P, so we want him the one overseeing it. Which leaves us option 3- Surgery- Reece only needs about 10-15 degrees of extension added to his right elbow to be able to wipe himself. This can be achieved through lengthening the biceps muscle and possibly loosening the joint. Recovery includes 3 weeks in a cast and therapy to regain strength and flexion in his elbow since the cast will set him in extension. Only the right elbow (dominant) will be operated on since it is the one with less extension. So, we have to look at the calendar to find a date to set this up and call back. As far as his left wrist losing 15 degrees, we continue wearing the splint and watch for functional limitations. No aggressive treatment for it now.
As of this morning, Reece woke up with a terrible cold. We just stopped outside of Birmingham to stock up on Motrin, Sudafed, and saline nose spray. The poor child cannot breathe at all.
I have spent this entire trip in a pretty foul mood. Maybe 2012 spoiled me, but I'm sick of doctors' appointments, therapy, researching solutions, and making medical decisions. Our journey is not nearly as stressful as some other special parents, and I can't imagine the fatigue they must feel with all of this. I can only speak how I feel. I think the decision making is the most draining for me. This age Reece is at where he can't make his own decisions, yet he can verbalize how he feels is tough. I hate the thought of sending him into surgery again, especially knowing the kicking, screaming, and crying that will be included. Just the thought of cutting bone is bothering me so much more than it used to. I hate that he got stuck with this, and I hate that we are responsible parents who actually care about his future. Not caring would be so much easier. So now we go home, look at the calendar, make phone calls, schedule Angel Flights, and wait. All I can do at this point is pray that God is still hearing me after 5 years of this mess and will hold our hands through it all. If I'm not myself the next few weeks, then yes, I'm probably a little depressed. I will continue to process, research, and agonize over these appointments today for a while. Don't take it personally. I'll just be bummed about this life we've been given for a little while. Then, I'll start to appreciate it again. I found this on Pinterest, and it's a good reminder for me- "Sometimes the best thing you can do is not think, not wonder, not imagine, not obsess. Just Breathe and have faith that everything will work out for the best." Lord, please help me remember that.
With love,
Beth


Beth Barham
Pinelake Sonrays Outreach Ministry Coordinator
(601) 750-6175
beth.barham@gmail.com