Last week was just one of those weeks. Really long, busy and overwhelming. So I feel like it deserves a blog of its own…
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| Miss Molly & Connor last week |
Monday – Busy day at the office with a dark cloud hanging
out above my head for most of it – tonight we were going to have to say “good-bye”
to Connor’s beloved babysitter, Molly. I
picked Connor up that night, tried to snap a cute pic of the two of them
together and managed to leave without crying.
We adored Molly and knew Connor was well taken care of when he was at
her house. So it’s sad (but we are happy
for her and her new vocational adventure!) and it’s overwhelming because we
still don’t have a child care plan for Connor.
But some leads are coming in from friends and colleagues and so far I’ve
been able to remain hopeful!
Tuesday – Working from my home office stresses me out quite
a lot of the time. Connor was home with
me which just complicates matters more as most of the day I feel like I’m
either being a slacker employee or a slacker mom. All the things I should be getting done
today…all the therapies and exercises I should be doing with Connor. The afternoon brought a PT session for Connor
which was good. The PT was happy with
the progress little man made while at Gramma’s and we had a really nice chat
about life. I’m so thankful for Connor’s
therapists…they are such kind and wise women.
After PT Connor and I had to go get Clara as she had an emergency
dentist appointment for a bruised gum. Turned
out it was nothing to worry about, but still.
Wednesday – Drove to CHOP in the morning for a Neurology
appointment. After waiting in the room
for an hour, the doctor finally came in, got all the updates from the last
three months and examined Connor…which all took another hour. She recommended three new consultants to
address various concerns and asked me to stick around for a little bit so the
CHOP OT could see Connor. The OT came
in, took history (again) and examined Connor (again).
She and neurologist concurred that Connor needs more OT and so
recommended he go to a place which is actually only 10 minutes from our
house. We have now been at CHOP for
three hours, it’s 2:00 and neither Connor or I have had lunch. So we head to cafeteria where we both eat and
then Connor has a meltdown. I guess if
one of us was going to have one, it is far more socially acceptable for him to
scream and cry in public. Although at
CHOP, I think it would have been ok for either of us to do it.
Back in the car for an hour to the new pediatrician’s office
to get her to sign paperwork for the orthotist.
I was going to have her sign it at Connor’s 9 month check up, but I had
to reschedule that so we could see the Neurologist and couldn’t get another
appointment with the pediatrician until August 21. Quite frustrated with that seeing as though
he needs shots and there are things I want to talk to her about that aren’t
urgent enough for a sick visit.
Thursday – Bring your baby to work day. While this, too, tends to stress me out it
wasn’t too bad due to my colleagues’ excitement in seeing Connor again. They all swooned over him and he rather
enjoyed it, smiling and babbling appropriately.
Thankful for colleagues who journey with us and are tolerant of baby
noises during the work day. Managed to
get a good bit of work done and then headed home.
After dinner I had to scrub the bathroom. I hate that job. I hate the smell of the cleaner and I hate
how no matter how hard you try, you can never get the shower clean. I usually manage to pawn it off on Brent as
he doesn’t have a sense of smell, but he managed to ignore my hints for long
enough that I just did it. Luckily,
Clara thinks cleaning the shower is great fun so she helped me for a
while. I figured it was “Earth friendly”
cleaner so it wasn’t going to hurt her either.
I know everyone has to clean their bathroom (or pay for someone else to
do it), so you’re probably rolling your eyes and thinking “suck it up, lady”
but I’m not going to. I hate that job
and will always complain when I have to do it. :)
Friday – In the car again, this time for a helmet appointment. Connor got his head rescanned as he’s getting
a new helmet.
Called to make appointments for the new consults only to be
told the next appointment isn’t for five weeks.
Now this isn’t surprising, but it just urked me. And when I called the new OT place by us I
was told they weren’t accepting new OT patients, but I could be added to the long
wait list. My other option for the
additional OT is to drive to the CHOP outpatient clinic in King of Prussia,
about 30 minutes away. Not sure that is
doable once a week as the craziness of my fall schedule kicks into high gear in
two weeks.
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| Realized I'm lacking in pix with Brent, so here's one of Daddy & Connor together watching the Olympics |
So yeah…it was just one of those weeks and I wanted to whine
about it. But I’m feeling ok now. This
week is already better and on Sunday we
leave for a few days at the beach which means next week will be great!
In happy news, I’ve learned the Joubert Syndrome &
Related Disorders Foundation’s conference is going to be in Minneapolis next
summer. I’m hoping at least Connor and I
will be able to go. I think it will be
good to connect with other JS families, hear from the doctors and other
presenters and spend some time with Minneapolis friends.
Thanks for reading this whiney post.
I have a page from a phrase-a-day calendar on the bulletin board above my desk that reads "Mañana sera un dia mejor" (Tomorrow will be a better day). A good thing to remember when a day or week feels like it's caving in on you. Thank you, God, for rainbows and promises!
I have a page from a phrase-a-day calendar on the bulletin board above my desk that reads "Mañana sera un dia mejor" (Tomorrow will be a better day). A good thing to remember when a day or week feels like it's caving in on you. Thank you, God, for rainbows and promises!
