Saturday, May 19, 2007
FSGS
I
have touched here on the fact that Pipo has kidney disease, but have
never really talked in depth about it. What he has exactly, is FSGS
or Focal Segmental Glomerulosclerosis. Basically, his kidney's excrete
too much protein into his urine, instead of into his blood where it
should go. This causes scarring on his kidneys, which can interfere
with renal function. The prognosis for FSGS patients is usually
eventual renal failure with dialysis and a transplant necessary.
Depending on the severity of the disease, and how well a patient
responds to treatment, this can take many years to run it's course.
There is usually a series of remissions and relapses, with the relapses
getting longer and more frequent. Probably more than you wanted/needed
to know.
We went into all of this knowing (for the most part)
what we were getting into. Pipo was very sick when he arrived last
year, and there was a fear of him going into renal failure in Haiti
just before he arrived. Thankfully, that wasn't the case, and our
awesome doctor had him admitted immediately and he and I stayed for a
week, getting his situation under control. Looking back, I can't even
imagine how frightened he must have been. He had been given about a
week's notice to leave everything he had ever known behind, and be
dumped in a foreign land with a bunch of stangers, and then brought to
a hospital where he was hooked up to all kinds of machines. He didn't
speak a word of English, and my Creole was pretty limited. But by the
end of the week, we were holding conversations, and he seemed to be
accepting me as his support.
When we were released, it was just
the beginning. He was taking about 10 different pills, 3 times a day,
and in the beginning, there were daily doctor's visits. Slowly, those
visits became weekly, and I learned how to do a lot of his monitoring
at home. He was incredibly bloated. It's hard to even look back at
those pictures and realize how sick he was. We had never known any
different though, having never seen him healthy.
Very slowly,
over the next few months, I watched the protein level in his urine
decrease, and we were able to start lowering his prednisone doses,
which helped a great deal with his puffiness and swelling. Towards the
end of the summer he was put on a 3 month round of oral chemotherapy,
and by the end of this, we were amazed at the difference. It looked
like we were headed into remission. By October, his doctors were amazed
by his progress, and the amount of meds he was on was minimal. We
weaned him off his meds slowly, and by January we were med free, with
not even a trace of protein in his urine. Although it is rare, his
doctor told us that occasionally, an FSGS patient will go into a
'permanent remission'. I hadn't known this was possible, and didn't
want to even dare hope that this was a possibility for Pipo. But He
just kept getting stronger and healthier looking, and we were more and
more hopeful. In a remission, it's easy to look at a child who is
running and playing, laughing like any other child and forget that
there is anything wrong. It's easy to pretend that they are like any other child.
But
FSGS is a lifelong illness. Even if there was a chance of permanent
remission, Pipo would still need to be monitored his whole life. Last
week we had our check up in Boston with his specialist. It was a happy
day, with Pipo looking great, and the doctor patting me on the back for
all our hard work paying off. Two days ago, I got a call from their
office. A closer look at his lab results showed a minimal amount of
protein in his urine. I love this nurse, and she knows us very well.
She has an adopted daughter from Guatemala, and we have had many a long
conversation in the waiting room about our families. She is a mom, and
she knows exactly how my mind started to spin when she called me that
day. She tried to reassure me, and reminded me that the key words were
a "minimal amount". But I know what it means. It means our bubble has
burst. It means the pretending is over. It's FSGS giving us that little
tap on the shoulder saying "hey, I'm still here... I'm not going away."
So
we sent in another urine sample to get a more in depth look. And now we
wait. I am sitting on my hands, trying to keep myself from calling the
lab and screaming "Hurry up with those results!" I know it's not a
horrible thing. I know that even if we are headed into a relapse, we
have caught it early, and Pipo has shown he responds well to the meds.
But this kid has been through so much. His specialist is still amazed
that he survived 3 years of this sickness while still in Haiti. He had
a wonderful doctor there, who did what he could with what was
available. But without adequate labs and testing, Pipo could not be
monitored. When he 'looked sick' they gave him meds. When he 'looked
better' they stopped the meds. There was never any way of knowing how
he was really doing. And when things got really bad, there were no IV
meds available. There was no chemo. So they prayed. And somehow God saw
a reason to keep this little boy going.
And now we sit and we
pray. We wait for that phone call to tell us where we stand. Pipo knows
what the extra labwork means. I try to play it down, but he knows there
is every possibility that he will be sick again. He has been moody and
quiet. I know he is just waiting for that phone call as well. He hates
taking meds, though he knows they make him better. But more than
anything, he hates being different. And taking a handful of meds
several times a day make him different.
He asked tonight if we
were going to church in the morning. I said "of course... we always
go." He looked relieved. I know part of him is excited to receive
communion. But I know the real reason for asking. He knows that now
more than ever, we need God. So we will all go to Mass tomorrow, and we
will pray. Pray for that phone call, and pray for the strength to move
into this next phase of our journey.
Monday, May 14, 2007
Happy Birthday Charlie!
Yesterday was the beginning of birthday season here in Fitzville... we have four birthdays over the next couple of weeks.
At
Charlie's request, we went out for breakfast, just he and I and my mom,
to celebrate his birthday and Mother's Day. I couldn't have come up
with a better idea myself. With 7 kids, finding one on one time is
always a struggle, and a morning like this is always incredibly special
for me as well as the child. It always reminds me of how special they
each are uniquely. ANd Charlie is no exception.
The one thing
everyone who meets this boy says is that he is "just so happy!" It's
true... he was honestly born smiling. I know they will all tell you
it's gas in a newborn, but even the nurses commented on how he just
seemed to have a continual smile on his face. And for 7 years, that
smile has hardly left his face. He is the first one up in the morning,
always with a smile, and the first one with a kiss goodnight, again
with the smile. It's hard for anyone else to be in a bad mood around
him.
Recently, someone emailed me that they had found this
article online. I wrote it right after Charlie was born, I can't
believe it is still online. I can't believe I only had 4 kids once!
Saturday, May 12, 2007
Big Day...
Not
just a big day, but a HUGE day here in Fitzville. Pipo made his First
Holy Communion. I posted back in February about literacy and mentioned
that we had an issue at church about whether or not Philippe would be
able to have this day. They tried to tell us that because he couldn't
read yet, he couldn't make his First Communion.
Rule number
one... don't get Mama Bear angry, and angry I was. We fought that
battle, and he ended up finishing the year in a new class for CCD and
had his special day today. As I posted after his baptism, this kids
faith is amazing... to deny him this day would have been just plain
wrong.
But all this has me thinking about fighting battles. We
have had a few small battles to fight, and some not so small such as
this one. I knew jumping into transracial adoption would not be an easy
simple thing, but like most other things in life, you just don't know
'til you're in it. I am realizing that we have a long road ahead of us
with fighting battles, and with teaching Pipo to fight his battles as
well. But what I realized after this whole experience is how fierce my
love for him is. I always want to believe I love all my kids fiercely,
but rarely is that tested with my others. When someone slights any of
my children, I get my back up. I know that Pipo is much more vulnerable
to being slighted, and because of that, I think my back goes up a bit
quicker.
All this said, church is the last place I expected to
have to go to battle for him. I am glad it is past us, and has been
resolved, because it was a beautiful day. He was incredibly proud, as
we were of him.
Sunday, May 6, 2007
Cinco De Mayo
Last night, we hosted an Earth day/Cinco de Mayo party for Warriors Way.
Our good friend Ricardo had helped the kids make some rain sticks on
Friday, and he brought al of his hand drums. It was an amazing sight to
see all the kids and adults gathered around the roaring bonfire
drumming away. Not sure what the neighbors thought of all this, but I
know it is a night my kids are not going to forget anytime soon!
Friday, May 4, 2007
Music and more...
Last
night we said goodbye to our music teacher, Michael, until the fall. As
much as we love our Thursday nights, our spring sports schedule was
getting too hectic, and we know we won't be around in the summer
anyways.
Last fall, I was looking on Craig's list for a voice
teacher for Kaleigh. I stumbled upon an ad from a young Berklee
graduate who taught guitar, voice, bass, piano, drums etc... I couldn't
believe my luck. I had always joked with Fitz that I would love some
kind of a "sound of music" arrangement, where someone just hung out
here and taught all the kids. This is exactly what I had been looking
for. A few emails, and phone calls later, Michael agreed to meet the
kids and see what we could set up. We agreed to 2.5 hours every
Thursday night. That first night, I was taken aback by how young he
was. I think Michael was taken aback by the sheer chaos of 7 young kids
greeting a cool new guy in our house. He was very used to sit
down-formal lessons... a half hour at this house, a half hour at that
house. I explained that we didn't need to do it that way, that we were
looking for the kids to learn music and have fun, and however that
worked out between he and the kids would be fine. It took a few weeks
for him to settle in and really believe that we were as laid back as we
told him. And in no time at all, he was just as laid back each week,
and just having fun with the kids.
What I really didn't expect
though, is that Michael would quickly become like part of the family,
and that it would turn into so much more than a music lesson. He is
truly a gifted teacher, and quickly picked up on each of my 7 kids'
quirky personalities. His girlfriend is even from Haiti, and oftentimes
he would call her on his cell phone and have her speak creole to Pipo.
His lessons with Charlie were almost a therapy session for a kid with
fine motor issues and ADHD. He played into EJ's passion for the banjo
and redefined the instrument, teaching him songs by Aerosmith and
Nirvana. Every moment with the kids was a pleasure to listen in on. One
night, I was down doing laundry, and came upstairs to a full on jam
session. He had spent a few minutes with each of them teaching them a
simple little blues riff, and had them all on different instruments,
playing away. Tommy was right in the middle of it all, dancing away,
and making Michael laugh until he cried.
I soon realized that
with his hectic schedule, he usually showed up starving, having not
eaten dinner. We quickly incorporated dinner into our sessions. One
particularly crazy night, when Fitz was working, and we were in the
middle of selling our old van, I needed to go out with someone who had
come to look at it. I had just put dinner on the table, and Michael had
just walked in the door. Without even thinking, I handed my dishes to
him and told him to go eat with the kids until I was finished. When I
came back, he was laughing away at the chaos of mealtime in our house,
and he quickly told me he was going to call his mother when he got
home. "I need to thank her.... I don't know how she did this every
night!"
So last night was much like all our other crazy nights.
Fitz was working late again, and I had a crazy schedule. Michael sat
with Tommy at the piano, while some of the others finished up their
dinners. I had to run out to pick up a couple at soccer practice, and
when I came back, the house was empty. I looked out in the backyard,
and there they all are. Michael and Tommy were playing against the rest
of the kids in soccer. Tommy was using a garbage lid as a shield in the
goal, and Charlie was trying to tackle Michael to get the ball away.
When
we started these music lessons in the fall, I never imagined it growing
into this. We didn't end up with a music teacher... we ended up with
the coolest surrogate big brother in the world, who taught my kids
everything they wanted to know.
Thursday, May 3, 2007
Spring Fling
After a late Wednesday night spaghetti dinner/jam session, I was geared
up for the kids to be slow moving today. But they were up at 6 am
raring to go.... I forgot it was "Spring Fling" day! Every year, the
playground aides get together and plan a big "spring fling" for the
kids. Recess is turned into a virtual luau, with hula hooping, limbo
contest, and Jimmy Buffet blaring. Lunch is "soda fountain" day, with a
cookout, milkshakes, and popsicles for all.
It's a fantastic
day for all the kids, and the staff really gets into it as well, with
hawaiian shirts and leis. Going back to my pre-kid teaching days, I
remember how hard this time of the year is, especially at an elementary
school. It is so hard to keep their attention when the sun is shining
and the playground is just outside the window. My own kids have all
been racing off the bus each day, ready to jump on their bikes, or run
out into the yard and dig in the garden. The "Spring Fling" is such a
great way to break up this 'home stretch' we are in before summer.
Makes me think everyone should have a "spring fling" day... throw on
your own hawaiin shirt, skip out on your responsibilities for an hour
or two, and run outside to play.
I'm seeing if the import worked. I love you!
Posted by: Fitz | June 02, 2007 at 05:46 PM