Matt and I both agree that we get this question ALL THE TIME. Neither one of us really knows the best way to respond. I pretty much always say that all things considered, he’s doing really well. When you look at all of Connor’s issues, this is the truth. Matt recently started on a new project at his company so he has an entirely new team. This means, among other things, trying to tell people about Connor (same for me when I started at a new school this year).
As I type this, it’s hard to believe that a year ago we were still at MUSC (albeit leaving tomorrow on the 11th). I mean, his birthday was SO long ago. Thinking back to that time and looking at some of the pictures, it’s really kind of surreal. Let’s just say I’m glad we got to take our little guy home. The folks at MUSC are great, but going back and forth from our parent’s house to the hospital and having to use a phone to get permission to see him sucked!
So here’s an update on Connor and some of the results we’ve gotten back.
Neurology: Connor still has microcephaely…that’s obviously not something he’s going to “grow out of.” His MRI in July showed his brain stem was normal (yay!), BUT, he has delayed white (or is it gray?) matter. Delayed is better than terminal, which means it would’ve stopped growing altogether. When Connor went to the hospital back in December, it was a suspicious seizure combined with his high fever that prompted us to call 911. Turns out it wasn’t a seizure, but a quick head jerk he had been doing for a while was. He is now on another seizure medicine (in addition to the Keppra that he was already on). He’s still having them daily, but they do seem less frequent lately. Another piece of good news from his MRI in July was that his stroke was hardly visible. The neurologists had to really look to see where the stroke was. Connor is still delayed compared to most people and contrary to our happy photos we post on Facebook he can get quite the ‘tude. For example, I put sunglasses and a hat on him the other day and it caused a ten minute freak out!
Genetics: Earlier this school year, we got the genetic test results back. Connor had one thing turn up that he got from me (go figure!), but since Matt was not a carrier, that was not the problem. So we know he has some sort of genetic disorder, it just hasn’t been identified or diagnosed yet. Maybe it will be Connor Syndrome. When I found out nothing was found, I burst into tears. I was actually really happy because I did not want to hear “He has __________ and will only live until he’s __________ years old.” It means a constant question mark…but I’ll take it!
Pulmonary Hypertension: Connor still has it. He had a hearth catheter at the end of January because they wanted to add another medicine for the pulmonary hypertension, but they couldn’t get an accurate pressure reading at his sedated echo in November. They obviously didn’t want to add another medicine if he didn’t need it, so that’s why we had the hearth catheter. The heart catheter indicated mild to moderate pulmonary hypertension that shouldn’t affect him for, get this: 5 to 6 DECADES. We’ll take it! They were also able to “test” the new medicine during the catheterization and it didn’t make a huge difference so no new meds…yay!
Vision: Connor had surgery back in September. He had an optical irredectomy and when the ophthalmologists checked his eyes in November, they could see to the back of his left eye. This had never been possible before because his cornea was so cloudy. Plus, his pressures weren't high so we didn't have to do eye drops. However, Connor is still not tracking or focusing so we’re not really sure if he sees anything. He is getting vision therapy so hopefully he’ll be able to see one day. We’re pretty sure it’s a neurological/procession issue since he theoretically should be able to see out of at least his right eye. Time will tell.
Food: Connor is still eating/drinking a high calorie formula. We’re definitely still working on solids. A couple of doctors have mentioned feeding tubes but as long as he’s eating we’re not really interested. Connor is a slow grower and we’re okay with that as long as he keeps growing.
Sleep: Connor can sleep through the night. However, that doesn’t mean he does! Connor still wakes up usually at least once a night. This teething phase we’re going through has been a rough patch sleep wise.
Teeth: Connor has his 2 bottom teeth, although they are still very close to the gums and haven’t grown as big as I see other babies’ teeth. Currently, it looks like he’s cutting at least 2-4. Regular teething things don’t work for him because he’s got a small head, so he has a small mouth and none of them fit in his mouth :(
Talking: Connor talks, just not in our words yet. We love hearing his stories!
Overall Development: Connor is certainly not a typical one year old. Most one year olds can sit, crawl, stand, and often walk. Connor still doesn’t have head control, so he can’t sit up. He does try to move on the floor during tummy time and is getting better at holding his head up!
Like I said, overall, he’s doing well (all things considered). One things for sure: how can you not love this face?!