Lucky Us
Busy, busy and more busy. New boss is working out great. She's very sharp and very motivated. It's weird having another person in here so much though!
Tomorrow is birthday party day. Danielle and Lauren are having a joint birthday bash. Danielle turned 11 on the 15th and Lauren turned 12 on the 16th. We used to do these when they were really little to keep things a little less hectic. Around the time when they were 5 and 6 they decided they no longer wanted their birthdays parties on the same day. So we stopped. Now, they want them together again. We're having like 40 people at this thing. Thank God its at Lisa's house. She has a pool and if its warm enough all the kids will be in there all day. Woo hooo!
I got a kick ass keyboard for work. Its the new Microsoft ergonomic, split, wrist tilting, carpal tunnel busting version. I gotta say, it's pretty sweet. The leather palm/wrist rests is very cozy indeed. The space bar needs a good jab though. My thumbs are going to be mighty strong! The little zoom button in the middle of the keys is as about as cool as anything I've seen. And, I've seen some cool shit in my day.
Today Aaron and the boys came up and had lunch with me. Seth and JP have never seen where I work and my co-workers have never met them. It was fun. Seth was everywhere!! He tried to run across the green and across the cafe and through the halls. Then he started climbing everything. They played foosball. Is it foos ball or foozeball? I have no idea.
Onto other things.
A co-worker here is a mom of 20 month old twins. Sylvie and Oona. Great names hah? Well, early last Spring they (she and her husband) had gotten pretty worried because Sylvie wasn't really thriving like her sister. She wasn't doing much of anything: sitting, crawling, developing muscle tone. Things are not going very well for her still. All summer this family drove to Boston (to Tufts and then to MassGeneral) for tests and more tests. It looks like she has a mitochondrial disorder. Her mom puts it best:
~~~
<excerpted from an email>
Our little Sylvie has
had a rougher summer, full of multiple doctors appointments, (e.g.
neurologists, physical therapists, occupational therapists, genetics
specialists), blood drawings, and moving slower. While her crying is
subsiding, we're still not any clearer as to why she is having her
developmental delays. As I'm sure most of you have heard from us at
some point these last few months, it is suspected that Sylvie has some
form of a neurodegenerative metabolic disorder. While it is extremely
rare (1 in 4,000 children), it is a genetic disease--that is usually
passed down via recessive genes from both parents. For more information
about what one category of metabolic disorders, see:
http://mitoaction.org/about.shtml#whatare
As you can perhaps only imagine, we feel as if we're living every
parent's worst nightmare right now. While we remain hopeful, our daily
life here in Northampton, MA is full of much activity and worry. Many
of you have asked how you may help, and honestly, just being in constant
contact with us is a help. Of course, stopping by to drop off a meal,
doing a load of laundry, hiring a cleaning person, or hanging out with
girls is great too! There is some discussion of pulling together a meal
tree for us this fall semester, which could be quite helpful--so be
prepared, you may be contacted! Thanks for your various phone calls and
emails; your encouraging words and support have been heart-warming!
While we have been super stressed this summer, it has been a HUGE help
to hear from many of you.
After much deliberations, we decided to take Sylvie to MassGeneral
Hospital in Boston for a skin/muscle biopsy and a spinal tap. This
surgery has been scheduled for Thursday, September 6th. We have already
met with the surgeon, and he seems like an excellent doctor with
amazing credentials, and on top of that he seems very attentive to the
special needs of infants! MassGeneral is a teaching hospital affiliated
with the Harvard Medical School, and so far, we've been impressed with
the level of expertise and compassion of the medical staff. Please
keep Sylvie is your thoughts/hopes/prayers these next couple of weeks,
and we'll let you know how the surgery goes.
~~
Yesterday I was visiting my mom and dad. We got to talking about the things that life can throw at you. She told me about the night she went to work after learning about my sister's pregnancy (she was only 16). My mother was crying and she was really upset (naturally). Her boss, a trusted and dear friend, called her over.
"Did you say she has cancer?"
"Oh no!! God no!! She's pregnant."
And with that, my mother's boss smiled and sort of put her hands and asked, "Aren't you lucky?"
Yes.
Yes we are.
Tomorrow is birthday party day. Danielle and Lauren are having a joint birthday bash. Danielle turned 11 on the 15th and Lauren turned 12 on the 16th. We used to do these when they were really little to keep things a little less hectic. Around the time when they were 5 and 6 they decided they no longer wanted their birthdays parties on the same day. So we stopped. Now, they want them together again. We're having like 40 people at this thing. Thank God its at Lisa's house. She has a pool and if its warm enough all the kids will be in there all day. Woo hooo!
I got a kick ass keyboard for work. Its the new Microsoft ergonomic, split, wrist tilting, carpal tunnel busting version. I gotta say, it's pretty sweet. The leather palm/wrist rests is very cozy indeed. The space bar needs a good jab though. My thumbs are going to be mighty strong! The little zoom button in the middle of the keys is as about as cool as anything I've seen. And, I've seen some cool shit in my day.
Today Aaron and the boys came up and had lunch with me. Seth and JP have never seen where I work and my co-workers have never met them. It was fun. Seth was everywhere!! He tried to run across the green and across the cafe and through the halls. Then he started climbing everything. They played foosball. Is it foos ball or foozeball? I have no idea.
Onto other things.
A co-worker here is a mom of 20 month old twins. Sylvie and Oona. Great names hah? Well, early last Spring they (she and her husband) had gotten pretty worried because Sylvie wasn't really thriving like her sister. She wasn't doing much of anything: sitting, crawling, developing muscle tone. Things are not going very well for her still. All summer this family drove to Boston (to Tufts and then to MassGeneral) for tests and more tests. It looks like she has a mitochondrial disorder. Her mom puts it best:
~~~
<excerpted from an email>
Our little Sylvie has
had a rougher summer, full of multiple doctors appointments, (e.g.
neurologists, physical therapists, occupational therapists, genetics
specialists), blood drawings, and moving slower. While her crying is
subsiding, we're still not any clearer as to why she is having her
developmental delays. As I'm sure most of you have heard from us at
some point these last few months, it is suspected that Sylvie has some
form of a neurodegenerative metabolic disorder. While it is extremely
rare (1 in 4,000 children), it is a genetic disease--that is usually
passed down via recessive genes from both parents. For more information
about what one category of metabolic disorders, see:
http://mitoaction.org/about.shtml#whatare
As you can perhaps only imagine, we feel as if we're living every
parent's worst nightmare right now. While we remain hopeful, our daily
life here in Northampton, MA is full of much activity and worry. Many
of you have asked how you may help, and honestly, just being in constant
contact with us is a help. Of course, stopping by to drop off a meal,
doing a load of laundry, hiring a cleaning person, or hanging out with
girls is great too! There is some discussion of pulling together a meal
tree for us this fall semester, which could be quite helpful--so be
prepared, you may be contacted! Thanks for your various phone calls and
emails; your encouraging words and support have been heart-warming!
While we have been super stressed this summer, it has been a HUGE help
to hear from many of you.
After much deliberations, we decided to take Sylvie to MassGeneral
Hospital in Boston for a skin/muscle biopsy and a spinal tap. This
surgery has been scheduled for Thursday, September 6th. We have already
met with the surgeon, and he seems like an excellent doctor with
amazing credentials, and on top of that he seems very attentive to the
special needs of infants! MassGeneral is a teaching hospital affiliated
with the Harvard Medical School, and so far, we've been impressed with
the level of expertise and compassion of the medical staff. Please
keep Sylvie is your thoughts/hopes/prayers these next couple of weeks,
and we'll let you know how the surgery goes.
~~
Yesterday I was visiting my mom and dad. We got to talking about the things that life can throw at you. She told me about the night she went to work after learning about my sister's pregnancy (she was only 16). My mother was crying and she was really upset (naturally). Her boss, a trusted and dear friend, called her over.
"Did you say she has cancer?"
"Oh no!! God no!! She's pregnant."
And with that, my mother's boss smiled and sort of put her hands and asked, "Aren't you lucky?"
Yes.
Yes we are.
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