April & May
We haven't done a proper update for almost 2 months, so I will begin with a recap of April.
For most people, when they think of April 15th, they think of tax day. For our family it marks a much more significant event in our lives - the day Max was diagnosed with MPS.
On April 15, 2003 Mike and I took Max to a neurologist for the slight tremor he occasionally had in his chin. We noticed it the day he was being discharged from the NICU, and it was initially thought to be a reaction to one of his meds, or caused by an immature nervous system. It wasn't going away, however, so the doctor wanted us to see a specialist. We had to wait quite a while for an appointment, and we expected he was going to tell us it was a result of the brain bleed Max had at birth.
In the week prior to Max's visit to the neurologist Max had two other significant appointments. He saw an orthopedic doctor for the lump on his back, who diagnosed him with kyphosis. He also had his 9 month check up, where we learned his head had grown significantly. Max's head had always been large, and I remember one of the nurses commenting that preemies had to grow into their heads. I knew his head was getting bigger, as I had just purchased a new hat for him, but I wasn't that worried because he was a such a big boy.
I usually attended Max's appointments by myself, as he had many of them and Mike couldn't miss that much work. Thank goodness he came with me that day. I don't know what I would have done without him. I think we knew something serious was going on with Max, we just didn't want to believe it. We had looked up kyphosis in infancy on the web, and had read about Hurler. We dismissed it because it sounded too horrible to be true. How could it be true, as we had gone through so much to have him, and he had been through so much as a preemie already? And, we had already been to so many doctors and therapists and so far no one had suggested anything genetic.
The doctor told us he suspected MPS, and told us it would affect Max's mental and physical development. He did not, however, tell us it was terminal. Instead he let a resident print out the home page of the MPS Society for us, and sent us on our way to the lab. We almost couldn't breathe when we read the description of MPS. We called our families from the car. When we got home my mom and sisters were at the house with Grace. We sobbed the entire night. It wasn't until several lab mix ups and weeks later that we got the final diagnosis of Hurler. We never imagined that come this April he would be dead.
Of course, April also marked the celebration of Easter. It was much harder than we had expected it to be, and we missed Bubba greatly. Grace was treated very well by the Easter Bunny and his associates, as many people remembered her this year. Thank you all so much. We made dinner at the RMH near us, and it was a great success thanks to the help from my mom, sisters, brother, aunt and cousins. We also had a fiesta at the RMH for Cinco De Mayo. Thanks to my family and the Micucci's for your help with that, or should I say gracias?
Everyone who reads this site knows how grateful we are to the RMH in MN. We were extremely honored to be a part of two publications by the house. Max and Grace's pictures appeared in the RMH newsletter and pledge card. I really hope their faces inspired a lot of donations - who could say no to those smiles and dimples?
May was not lacking significant events either. Although, when your child is gone most dates become significant. We celebrated Mother's Day on May 9th, and Mike's birthday on May 10th. What better way to celebrate than by running away from our troubles? Thanks to some secret planning by Mike and his accomplices, we were able to take a MUCH needed trip to San Diego! Mike and Grace presented me with a locket containing Max's pictures before we left. We wanted to get most of our crying out of the way before our vacation.
TRIP RECAP: We spent 4 very quick days in San Diego and it was beautiful.
We stayed at an amazing resort on Mission Bay and we swam every day in the heated pool. The grounds of the resort were spectacular, modeled after a tropical paradise, and the foliage and flowers were gorgeous. We felt a million miles away from Illinois. We spent Saturday exploring the resort and jumping on the bed. Sunday started with a great Mother's Day brunch and a trip to Legoland. We discovered that our little princess LOVES rides. Lucky for Mom and Dad's queasy stomachs, Legoland is rather gentle in the ride department. Grace rode on two boats, a safari jeep, two roller coasters, and was totally in her element. She loves Legos and she got to see so many sculptures that were almost too good to be true. The highlight was probably Mini-Land, an area that took 16 million Legos to build, and is home to reconstructions of New York City, San Francisco, New Orleans, Washington DC and so much more. It was a perfect day.
Monday all the frenzy of travel, swimming and running around caught up a bit at Sea World. Grace was less than impressed. The park and the shows were outstanding, but after Legoland, our little tyke sure was looking for some rides, and some weren't open, and some weren't opening until after Memorial Day. But we still had a good few hours and getting home earlier gave us a better jump on what turned out to be the highlight of our trip - our visit with the White family, our San Diego Hurler friends. We learned about their amazing daughter Susannah when her Mom, Amy, first spoke with Margaret before we ever went to Minnesota. We met Susannah, her big sister Madeline, and their parents right before transplant began, and they were supportive to us on a daily (and very-late nightly) basis. Amy was able to make it to Max's funeral, and while the outcomes of our respective transplants are very different, the level of understanding and mutual admiration was clear from the moment they welcomed us into their home. It was as if we were seeing family, and in way, we were. Grace plotted and played with Madeline like a big sister, and the way she talked about Susannah was another indication of the unconditional love she had for her brother. When we met the Whites last July we had an indication of what could be, and less than a year later, we saw what might have been. Both Margaret and I remarked that a hug from Susannah sure felt like our Bubba. Most Hurler kids look alike, but Susannah was very much a girl and while she didn't look like Max, she did feel like him. Thank you Amy and Klane for your extraordinary generosity. Tuesday came all too quick, but we squeezed in a short drive up to La Jolla and had a great lunch and a little trip to a rocky beach before we had to head home.
Returning home was very hard. It was as if we had just pushed Mother's Day back a few days. We also learned that Niki, a beautiful girl with Hurler undergoing a transplant in Chicago, had passed away on Mother's Day. Our thoughts and prayers continue to go out to all the families affected by all aspects of this disease. We want to say thank you to everyone who sent messages on Mother's Day. It really means a lot to us, and it really helped us get through the week.
This week marks the 6 month anniversary of Max's death. I am sure it will be very hard for all of us. We have been attempting to pack up Max's room. It is unbelievably hard, but we are slowly getting it done. We have also made some very good progress sorting the 100+ envelopes we have received from our insurance company. We put it off as long as we could, since every charge is a reminder of the countless procedures Max had endured. We are already worried about making it through Max's birthday in July.
Some of our friends in the Hurler community sent us a flowering tree which we planted in our yard in Max's memory. They told us about the tree after Max died, but of course you can't plant trees in Chicago in the winter, so they had it delivered to our house a couple of weeks ago. It is a beautiful reminder of our beautiful boy and the wonderful friends we have met along this journey. Our green-thumbed friends Chris and Craig (the web-mistress and master of this site) have offered to help us plant some flowers near the tree to create a little memory garden.
Now on to Grace news ...
As many of you already heard, right after our March update we took Grace to her very first (kids) rock concert! Ralph, of the Ralph's World CD's, held a kiddie rock concert in a bar close to our house. Don't worry, the bar was made kid-friendly, complete with a carpet to dance on and juice-box serving waitresses. Grace danced the entire time with her friend Mary. We enjoyed watching her so much, and were swept away from everything for a brief period. I can actually say it was the first time I felt pure happiness in a very long time. Once I realized I was happy of course my eyes welled up with tears and my heart ached for Max. Soon after the concert we realized Grace had developed her first crush. She talked about Ralph with a funny look in her eye, and stated "Mom, I don't want to be a doctor anymore when I grow up. I want to be a rock star!" I told Grace she could be both.
Grace is wrapping up the school year, and we cannot believe how quickly time has passed. Her best buddy Lindsey moved last week and over all Grace handled it pretty well. A little girl moved next door, and Grace of course is thrilled. They have yet to play together and we are hoping they will be well matched. Ballet is also coming to a close, and the class is preparing for their recital. We are hoping Grace and Lindsey can stop giggling for the few minutes they are to be on stage.
Thanks to all of our loyal supporters. Have a wonderful Memorial Day weekend.
Love,
Margaret, Mike and Grace
For most people, when they think of April 15th, they think of tax day. For our family it marks a much more significant event in our lives - the day Max was diagnosed with MPS.
On April 15, 2003 Mike and I took Max to a neurologist for the slight tremor he occasionally had in his chin. We noticed it the day he was being discharged from the NICU, and it was initially thought to be a reaction to one of his meds, or caused by an immature nervous system. It wasn't going away, however, so the doctor wanted us to see a specialist. We had to wait quite a while for an appointment, and we expected he was going to tell us it was a result of the brain bleed Max had at birth.
In the week prior to Max's visit to the neurologist Max had two other significant appointments. He saw an orthopedic doctor for the lump on his back, who diagnosed him with kyphosis. He also had his 9 month check up, where we learned his head had grown significantly. Max's head had always been large, and I remember one of the nurses commenting that preemies had to grow into their heads. I knew his head was getting bigger, as I had just purchased a new hat for him, but I wasn't that worried because he was a such a big boy.
I usually attended Max's appointments by myself, as he had many of them and Mike couldn't miss that much work. Thank goodness he came with me that day. I don't know what I would have done without him. I think we knew something serious was going on with Max, we just didn't want to believe it. We had looked up kyphosis in infancy on the web, and had read about Hurler. We dismissed it because it sounded too horrible to be true. How could it be true, as we had gone through so much to have him, and he had been through so much as a preemie already? And, we had already been to so many doctors and therapists and so far no one had suggested anything genetic.
The doctor told us he suspected MPS, and told us it would affect Max's mental and physical development. He did not, however, tell us it was terminal. Instead he let a resident print out the home page of the MPS Society for us, and sent us on our way to the lab. We almost couldn't breathe when we read the description of MPS. We called our families from the car. When we got home my mom and sisters were at the house with Grace. We sobbed the entire night. It wasn't until several lab mix ups and weeks later that we got the final diagnosis of Hurler. We never imagined that come this April he would be dead.
Of course, April also marked the celebration of Easter. It was much harder than we had expected it to be, and we missed Bubba greatly. Grace was treated very well by the Easter Bunny and his associates, as many people remembered her this year. Thank you all so much. We made dinner at the RMH near us, and it was a great success thanks to the help from my mom, sisters, brother, aunt and cousins. We also had a fiesta at the RMH for Cinco De Mayo. Thanks to my family and the Micucci's for your help with that, or should I say gracias?
Everyone who reads this site knows how grateful we are to the RMH in MN. We were extremely honored to be a part of two publications by the house. Max and Grace's pictures appeared in the RMH newsletter and pledge card. I really hope their faces inspired a lot of donations - who could say no to those smiles and dimples?
May was not lacking significant events either. Although, when your child is gone most dates become significant. We celebrated Mother's Day on May 9th, and Mike's birthday on May 10th. What better way to celebrate than by running away from our troubles? Thanks to some secret planning by Mike and his accomplices, we were able to take a MUCH needed trip to San Diego! Mike and Grace presented me with a locket containing Max's pictures before we left. We wanted to get most of our crying out of the way before our vacation.
TRIP RECAP: We spent 4 very quick days in San Diego and it was beautiful.
We stayed at an amazing resort on Mission Bay and we swam every day in the heated pool. The grounds of the resort were spectacular, modeled after a tropical paradise, and the foliage and flowers were gorgeous. We felt a million miles away from Illinois. We spent Saturday exploring the resort and jumping on the bed. Sunday started with a great Mother's Day brunch and a trip to Legoland. We discovered that our little princess LOVES rides. Lucky for Mom and Dad's queasy stomachs, Legoland is rather gentle in the ride department. Grace rode on two boats, a safari jeep, two roller coasters, and was totally in her element. She loves Legos and she got to see so many sculptures that were almost too good to be true. The highlight was probably Mini-Land, an area that took 16 million Legos to build, and is home to reconstructions of New York City, San Francisco, New Orleans, Washington DC and so much more. It was a perfect day.
Monday all the frenzy of travel, swimming and running around caught up a bit at Sea World. Grace was less than impressed. The park and the shows were outstanding, but after Legoland, our little tyke sure was looking for some rides, and some weren't open, and some weren't opening until after Memorial Day. But we still had a good few hours and getting home earlier gave us a better jump on what turned out to be the highlight of our trip - our visit with the White family, our San Diego Hurler friends. We learned about their amazing daughter Susannah when her Mom, Amy, first spoke with Margaret before we ever went to Minnesota. We met Susannah, her big sister Madeline, and their parents right before transplant began, and they were supportive to us on a daily (and very-late nightly) basis. Amy was able to make it to Max's funeral, and while the outcomes of our respective transplants are very different, the level of understanding and mutual admiration was clear from the moment they welcomed us into their home. It was as if we were seeing family, and in way, we were. Grace plotted and played with Madeline like a big sister, and the way she talked about Susannah was another indication of the unconditional love she had for her brother. When we met the Whites last July we had an indication of what could be, and less than a year later, we saw what might have been. Both Margaret and I remarked that a hug from Susannah sure felt like our Bubba. Most Hurler kids look alike, but Susannah was very much a girl and while she didn't look like Max, she did feel like him. Thank you Amy and Klane for your extraordinary generosity. Tuesday came all too quick, but we squeezed in a short drive up to La Jolla and had a great lunch and a little trip to a rocky beach before we had to head home.
Returning home was very hard. It was as if we had just pushed Mother's Day back a few days. We also learned that Niki, a beautiful girl with Hurler undergoing a transplant in Chicago, had passed away on Mother's Day. Our thoughts and prayers continue to go out to all the families affected by all aspects of this disease. We want to say thank you to everyone who sent messages on Mother's Day. It really means a lot to us, and it really helped us get through the week.
This week marks the 6 month anniversary of Max's death. I am sure it will be very hard for all of us. We have been attempting to pack up Max's room. It is unbelievably hard, but we are slowly getting it done. We have also made some very good progress sorting the 100+ envelopes we have received from our insurance company. We put it off as long as we could, since every charge is a reminder of the countless procedures Max had endured. We are already worried about making it through Max's birthday in July.
Some of our friends in the Hurler community sent us a flowering tree which we planted in our yard in Max's memory. They told us about the tree after Max died, but of course you can't plant trees in Chicago in the winter, so they had it delivered to our house a couple of weeks ago. It is a beautiful reminder of our beautiful boy and the wonderful friends we have met along this journey. Our green-thumbed friends Chris and Craig (the web-mistress and master of this site) have offered to help us plant some flowers near the tree to create a little memory garden.
Now on to Grace news ...
As many of you already heard, right after our March update we took Grace to her very first (kids) rock concert! Ralph, of the Ralph's World CD's, held a kiddie rock concert in a bar close to our house. Don't worry, the bar was made kid-friendly, complete with a carpet to dance on and juice-box serving waitresses. Grace danced the entire time with her friend Mary. We enjoyed watching her so much, and were swept away from everything for a brief period. I can actually say it was the first time I felt pure happiness in a very long time. Once I realized I was happy of course my eyes welled up with tears and my heart ached for Max. Soon after the concert we realized Grace had developed her first crush. She talked about Ralph with a funny look in her eye, and stated "Mom, I don't want to be a doctor anymore when I grow up. I want to be a rock star!" I told Grace she could be both.
Grace is wrapping up the school year, and we cannot believe how quickly time has passed. Her best buddy Lindsey moved last week and over all Grace handled it pretty well. A little girl moved next door, and Grace of course is thrilled. They have yet to play together and we are hoping they will be well matched. Ballet is also coming to a close, and the class is preparing for their recital. We are hoping Grace and Lindsey can stop giggling for the few minutes they are to be on stage.
Thanks to all of our loyal supporters. Have a wonderful Memorial Day weekend.
Love,
Margaret, Mike and Grace
posted by Mike Ciacciarelli
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