“He’s got his crash helmet on” chuckled the parking garage
attendant as he made the genius observation that my baby was indeed wearing a
helmet that, yes, resembles a crash helmet.
Part of me wished I could burst into tears and make up a story that
contains some horrible reason why he was forced to wear such a contraption, but
I did the polite thing and laughed along.
 |
| Sporting the new cranium helmet |
So yes, the most visible new addition to Connor’s journey is
his cranium helmet. Most likely due to
his desire/need since birth to turn his head to the left, his head became
“vaulted” on the left side. He will have
to wear the helmet for about four months to squish his head into the
appropriate shape. His misshapenness was
so severe that his ears were actually offset from each other by about half an
ear. Connor is tolerating the helmet
quite well. He wears it 23 hours a day
unless it is super hot and/or humid out and then I cannot bear to make him wear
it all day.
Most people are very sweet and almost hesitant when asking
or speaking about the helmet. We’ve had
other parents whose child has worn a helmet come up, share a little of their
story and then, without fail, show off their kid’s now basketball round head. Sometimes I go into why his helmet wearing is
a little different than most (most kids wear the helmet because of a flat back
of the head), but most of the time I just smile and nod.
Other medical updates in the last few weeks:
- Connor
had an ultrasound of his abdomen as liver and kidney function issues often
accompany Joubert Syndrome. For the
first time in what seems like forever we received good news - his liver
and kidney look normal!
- Blood
work is being done for genetic testing.
There are two ways JS happens - either genetically or
spontaneously. I’m hoping for
Connor’s to be the spontaneous form…if it genetic that means more testing
for the rest of us and could make family planning more difficult for Clara
and others in our family. And holy
cow genetic testing is expensive.
Immediately did a “Thank you Lord for health insurance and medical
assistance” when I opened that bill!
I’m not sure how families without health insurance or who can’t
navigate the system have a special needs child - it is so expensive and
daunting.
 |
| Connor after Physical Therapy |
- We are
now being visited by three lovely therapists - weekly Occupational and
Physical Therapies and Vision Therapy every other week. We are already seeing progress - Connor
is doing MUCH better at holding his head up and a few days ago he lifted
his head while being held belly down.
Yup - Brent and I both got teary eyed at that one as lifting his
head while on his belly was one huge milestone we noticed early on Connor
wasn’t meeting.
The biggest adjustment these last few weeks has been trying
to figure out how all these ongoing therapy and doctor appointments fit into
our already jam packed and very calendared lives. So far, we’ve been able to make it work this
spring and it looks like we’ll make it through the summer just fine. I’m nervous for fall once school starts
again, my job gets “fall crazy” and the possibility of Brent starting to travel
for work looms. It’s just a lot. I am so
thankful that Connor has a wonderful woman (ok, really a whole additional family)
to take care of him while we’re at work.
Molly (yup, that’s her name, too) is God-sent and I’m reminded of that
every time she asks about an appointment or agrees to have a therapist come
into her home to do a session. God has
given us what we need to do this so far and so in the moments that I feel like
it’s all too much I need to remember that what is needed will continue to be
provided.
Thanks for your love, prayers, well wishes, offers of help, story sharing, advice and reading. We appreciate it! :)
