We’ve had a few developments with Edward and his medical care, so I thought I’d take the time to write an update.
Since I knew how busy December tends to get, we held off on all doctors’ appointments until January. In hind sight, I’m not so sure that was a great idea, as now we’ve had six appointments in 16 days!
Last week, Edward and I traveled by ourselves to St. Louis for an appointment at the children’s hospital. Edward is scheduled to have a tethered cord (on his spine) repaired sometime this spring, but the surgeon had a few other doctors he requested we see before that big day.
Last week was the first of these appointments; we saw a neurologist.
Edward was his charming self, and the doctor actually had a good grasp on everything in his file, so honestly, the appointment was very short. Based on a few quick cognition tests and my reports, the doctor agreed that he does not demonstrate any neurological concerns. In fact, she used a block to test the communication between his brain and his fine motor coordination, and Edward identified the T for Taty on the block. Considering he is still very new to the English language, and only three, the doctor was impressed.
That same day, Edward required some blood tests, so we went to the dreaded lab and endured those. Unfortunately, Edward has grown accustom to this routine, and has started getting anxious as soon as we enter that part of the hospital!
Earlier this week, we paid our pediatrician a visit. We really don’t see her very often for Edward, because despite how his diagnosis makes him sound, he’s an extremely healthy kid. He really hasn’t been sick at all yet (love that orphanage immune system) and he has never really complained of any aches or pains!
This pediatrician visit was scheduled because we are preparing for a more immediate surgery – the removal of his tonsils and adenoids. This surgery is scheduled for February 5 at St. John’s in Springfield, and they will keep Edward overnight for monitoring.
After some basic questions and tests from the pediatrician, Edward has been cleared for the operation! We believe this surgery will allow him to sleep, eat, hear, and speak better, so we’re anxious to have it done!
Then, on Thursday, Edward and I made the long trek to St. Louis again (praise the Lord for the twelve podcast episodes of Serial and for Edward being such a good napper/traveler!). This time, we had a follow-up appointment with his Infectious Disease doctor; we discussed his blood work from the previous week. His levels are wonderful and it seems as though his daily medications are working beautifully. They did order a routine urine test and began a second TB test (apparently standard procedure), but then sent us packing.
After lunch and killing a bit of time, we moved on to the urologist. He had something in his notes about Edward having constant, recurring UTIs, so he began to discuss treatment options. After a few moments of his plan, and some extremely confused expressions on my face, we realized we were not on the same page at all! Edward hasn’t had a single UTI! The neurologist made an incorrect report, and threw the urologist totally off-course.
After we aligned our facts, the urologist pretty much said he had no concerns about the tethered cord affecting Edward’s bladder. His risks were low. I was thankful that we had briefly attempted potty training a couple weeks ago (he’s not yet staying dry, but can successfully urinate on command). This information seemed to confirm what the neurologist believed, we were good to go ahead with the surgery, but from his standpoint, it isn’t an urgent matter.
At this point, we were twenty minutes late for our next appointment. One of our other doctors made these appointments though, so apparently, in that case, being late isn’t as big of a deal! This appointment was with an orthopedic surgeon.
As soon as we arrived back in the exam room, the nurse whisked us away to X-ray.
They took a couple quick shots of Edward’s spine and then the doctor and his assistants came right into the room. They pointed out the biggest problem area – two-thirds of the way down his back – and said that if at least one hemi-vertebrae is removed, his other vertebrae can be fused together to help straighten that portion of his spine. This surgery will potentially stunt his growth slightly. I’m not sure he’ll ever clear four foot tall, as his small size is also associated VACteRL association, but as a friend pointed out last night, his personality stands at least seven feet high and will make up for his small size.
The removal of this hemi-vertebrae can most likely be done at the same time as the tethered cord surgery. A few of the doctors will meet together to discuss this possibility, and then we’ll be able to schedule the surgery for this spring.
Our final stop of the day was back at the dreaded lab. This time though, they only required a urine sample (again, so glad for our brief potty training stint!) We collected the sample and were done with our long, exhausting day!
I think we’re done with appointments until the day of Edward’s tonsil, adenoid, and tubal surgery on February 5. We’re praying this surgery is as helpful as we anticipate, and that he makes a quick recovery!
One final update on the E-man though: In December, his physical therapist said that he had DOUBLED his range of motion in his left hip. Sporadic therapy (telling it like it is…) and exposure to typical childhood activities have given his hip a range of motion it did not have before. In December, Edward was not yet able to sit “criss-cross applesauce.” Today, however, he climbed onto one of our dining chairs, and I realized he had independently folded his legs and was sitting comfortably.
So, of course, I took a picture!
This little man is a fighter. He has come so far, and will continue to progress in the days to come. I guarantee it!