Steve and I talked long and hard when it came to Joshua's initial medical file. Up until Joshua, our ventures into the medical world have consisted of a few ear infections, a couple of bouts of croup and one broken wrist. We have had incredibly healthy children. (knocking on wood here). We knew taking in Joshua, with some special needs questions, was going to tax us in ways we never experienced.
We went into this knowing we would have hearing issues.
We went into this knowing that surgeries (depending on how severe the hearing issues were) would be happening.
We also were prepared for the chance that Joshua was almost completely deaf (We're already working on Mandarin Chinese, what's the harm in adding ASL to the mix)
These we were ready to tackle.
We were also told to prepare for the unknown.
And a bit of unknown we have here ...
While in China when we noticed that our boy had a bit of an abnormality near his lower spine. This didn't seem to bug him at all, so we let it go until our medical appointment in Guangzhou. The doctor said, "Oh. Huh. Spina bifida. Was that on his report?" Steve and I were quite shocked (and yes, alarmed). The doctor read our expressions and said, "Oh no ... no no ... that's not what it is ... But it's still worth an MRI when you get back to the States."
We left our medical report a little surprised, but we wasted no time getting in to our pediatrician upon arriving at home. Here we learned the correct term for the aforementioned marker was a sacral dimple. These dimples can be nothing at all, or they can be indicators of something else. So, our pediatrician referred us to Helen DeVos for an MRI to check for Spina Bifida. In addition (because of the ear malformation) we had an ultrasound to locate possible kidney abnormalities.
Our experience at Helen DeVos was no less than spectacular. I had heard good things about this place, but I'm also a difficult person to please, so I didn't expect to be wow'd. I was wow'd. From the moment we arrived until the moment our free valet arrived with the car, our child's comfort was of tantamount importance. The playrooms were amazing. The nurses were astounding. Joshua (though a little unsure about all of this) was more than happy to blow bubbles (inside!!!) at the nurses as they wheeled him away to anesthesia. When we were paged (yup, we were at the Starbucks in the food court), we returned as quickly as possible but Joshua was already up, sipping a juice, and trying to convince the nurse he was ready to walk around. The MRI started early and took LESS time than expected (how often can you say that at a medical office). We were then looking at a nearly 2.5 hour wait before the ultrasound appointment. To our nurse, that was simply unacceptable. Our nurse took us immediately down the hall for an ultrasound. Joshua happily snuggled with Mom while they "tickled his tummy." By 9:20, our valet had been called, and we were out of the hospital in under 3 hours total time - a full 2 hours before our ultrasound had been scheduled to start. What.a.gift.
The waiting game for results was not as much fun. But, we received a call today (Wednesday) from our pediatrician's office. We had two pieces of great news and one piece of wait and see's.
- Great news #1: There are no markers for spina bifida at all. There was no evidence of a tethered cord. We are clear of that hurdle. HOORAY!
- Great news #2: Kidney function looked fantastic. There was nothing to be concerned about on the ultra sound
- Wait and see news: Joshua's MRI DID show that part of the pedicle of his l4 vertebrae was missing. In short, a piece of his spine wasn't there. We are being referred to a neurosurgeon at Helen DeVos for follow ups.
So, in a nutshell, not a lot of clarity, but some progress.
Next steps: we wait for the scheduling call from the neurosurgeon's office AND we anticipate our appointment at the ENT (who, we were told, would likely need to order more imaging to assist with next steps).
All in all, I'm proud of my brave little man. He was talking to Kayleigh after his big day at Helen DeVos. She asked if anything hurt. With a pathetic little sad face he held up his hand (bruised from an IV that was inserted after he was asleep and removed before he woke up) and said, "My hand, but I don't know why."
We'll keep you posted on future updates, and we covet your prayers for all of the big things ahead for our precious little man.
Baba and DiDi pre-procedure, watching Finding Dory in the waiting room