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?!
