Saturday, May 19, 2007
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
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
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
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
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
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
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
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.