Wednesday, February 29, 2012
The Fence
I have added "Catching My Breath" to Picket Fence Blogs which is basically a blog directory. By clicking on the button for Picket Fence that will be a “vote” for this blog. As I keep working on my goal of writing more often, I also would like to grow my readers and hope you will help me do so.
Thank you so much!
Monday, February 27, 2012
Flash
Flash update: NO CGD!
I will give a more detailed blog later, time for Monday taxi runs to begin.
Thankful for little blessings today.
I will give a more detailed blog later, time for Monday taxi runs to begin.
Thankful for little blessings today.
Sunday, February 26, 2012
Energy
Trying to keep my nervous energy in check tonight. We should have answers to this last round of tests sometime tomorrow. Until then I need to keep my mind busy so hopefully it will be tired enough to stop turning when it is finally time to sleep.
In honor of my dear husband's birthday I am attempting to make a Death Star birthday cake. Between that and the Oscars I think I should be pretty preoccupied this evening. The Death Star will be much easier than the Luke Skywalker Darth Vader cakes my aspiring Next Great Baker daughters drew and wanted me to bake. I am not at all a sculptor, but I can certainly manage a giant ball!
When we have information and are ready to share, I will post. I feel badly I am not calling you each individually, however that becomes quite difficult and honestly, writing it down for you gives me a chance to truly process what we've been told and the next steps in our journey.
Thank you again all for your prayers, understanding, and support. They mean more to us than words can explain.
In honor of my dear husband's birthday I am attempting to make a Death Star birthday cake. Between that and the Oscars I think I should be pretty preoccupied this evening. The Death Star will be much easier than the Luke Skywalker Darth Vader cakes my aspiring Next Great Baker daughters drew and wanted me to bake. I am not at all a sculptor, but I can certainly manage a giant ball!
When we have information and are ready to share, I will post. I feel badly I am not calling you each individually, however that becomes quite difficult and honestly, writing it down for you gives me a chance to truly process what we've been told and the next steps in our journey.
Thank you again all for your prayers, understanding, and support. They mean more to us than words can explain.
Friday, February 24, 2012
Welcome to Holland
I did not write this, I found this on a CGD website and thought it was a great analogy to share. It certainly articulated where we've been the past year. Hope you enjoy it. The link to the website is after the article.
Welcome to Holland
This piece was written by Emily Perl Kingsley, the author of the television movie, Kids Like These:
I am often asked to describe the experience of raising a child with a disability to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this.....
When you’re going to have a baby, it’s like planning a fabulous vacation trip - to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess come in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean, Holland? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy."
"But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay."
"The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place."
"So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met."
"It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts."
But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that’s where I was supposed to go. That’s what I had planned. And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss.
But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely, things about Holland.
Deep Breathing
Experts say that deep breathing is one of the best exercises for staying calm and relieving stress. Sure, it works, but so does driving down the Thruway with the radio blaring. Which happened to be the best medicine for me Wednesday morning.
It had been a long night with Paige, her fever had continued to spike over 104 even with medicine. Initially when I called the doctor we were told to go to Children's, but she would have to contact them first to let them know we were on our way. Before we could get out the door, the nurse called us back, telling us Children's did not want her there spreading whatever infection she had and that we needed to give the antibiotic time to work. Even though we were not going, we needed to watch her closely, so I settled in the recliner with my book ready for the night shift.
High temperatures are frightening. Even after popping her in tub, her temperature only fell a few tenths of degrees. In between each bout of sweats as the fever broke and before its inevitable rise she would talk in her sleep. This would have been much funnier had I not been so worried about her. The last time it happened, she sat straight up, looked at me and told me she "couldn't write anymore, there was something on her eraser!" Then she proceeded to lay right back down, snuggling Pooh Bear as tight as could be. Not long after, the chills set in, and after the last fresh tub, set of jammies, and bedding for the night at about 4, it seemed she was finally on the mend. Once I knew she was ok, I allowed myself to shut my eyes, hoping for a few hours before the little man called for me.
To say I was looking forward to a nap not long after I awoke the next morning was an understatement! Still, I was pretty happy that after three days she was actually asking to eat. I didn't care what she wanted, I would make anything. After polishing off two plain pink pancakes she scurried off to play with her sister.
Balance was returning to our house when the phone rang. It was our immunologist. I was caught off guard. Shouldn't examining the specimen and running tests take longer? I knew she would be calling, but in my mind I was prepared for a call in the afternoon. Without hesitation, I was informed that due to the biopsy findings the game had changed. The presence of a granuloma in addition to his other labs meant that Cole matched criteria for a disease they were not looking at before.
CGD, or Chronic Granulomatous Disease is now the illness they are considering. Our physician explained that CGD is another rare primary immunodeficiency disease that would require a lifetime of medication and limits to activities as well as a possible bone marrow transplant. Luckily, the test for this disease could be done here in Buffalo. We would need to go to Children's for a test sometime this morning or wait until Monday since the expert would need two consecutive days to work with the live cells. If we went today, we would know by the end of the week. Needless to say, running on adrenaline and caffeine I packed up the baby and off we went.
On my way, my head was just spinning with a million what ifs. The happy chatter from my little man only made my thoughts race faster. How could any of this be? Honestly, in this moment I could feel the anger pumping its way through my veins in a way I have never felt in my life. Maybe it was the lack of sleep over the past week, since it seems I've been able to divert this feeling for some time. Logically I know, CGD may not be what he has, but I still couldn't stop the feeling of fury as I thought of what his future might be if this test comes back as a positive.
My red passion melted quickly with a good song and the giggling drifting through the car from the back seat. I'm convinced he was laughing at my singing ability or lack thereof by the way. The more I thought about it, I realized and understood that I was not angry, just absolutely terrified of what may lie ahead. Not just all the medical stuff, but afraid of the heartbreak that could hit everyone we love. While valid, these are not places I wanted to let my mind to inhabit.
As I arrived at the hospital and held my precious child in my arms I vowed that no matter what I was feeling, each day would be cheerful, not just for Cole, but for the girls and Nick and I as well. We would be optimistic and trust that all of this is happening for a reason. I've even gone back to reminding myself daily not to dwell on what I cannot change, to lessen the risk of being consumed by worry so I am not gasping for breath like a fish out of water. Instead, I will not look too far down the road when I don't have to, just take things one day at a time, one moment at a time, one breath at a time so I can stay in the eye of this storm.
Don't worry, as we wait, I am practicing my deep breathing in between belting out some silly songs as all the kids giggle.
It had been a long night with Paige, her fever had continued to spike over 104 even with medicine. Initially when I called the doctor we were told to go to Children's, but she would have to contact them first to let them know we were on our way. Before we could get out the door, the nurse called us back, telling us Children's did not want her there spreading whatever infection she had and that we needed to give the antibiotic time to work. Even though we were not going, we needed to watch her closely, so I settled in the recliner with my book ready for the night shift.
High temperatures are frightening. Even after popping her in tub, her temperature only fell a few tenths of degrees. In between each bout of sweats as the fever broke and before its inevitable rise she would talk in her sleep. This would have been much funnier had I not been so worried about her. The last time it happened, she sat straight up, looked at me and told me she "couldn't write anymore, there was something on her eraser!" Then she proceeded to lay right back down, snuggling Pooh Bear as tight as could be. Not long after, the chills set in, and after the last fresh tub, set of jammies, and bedding for the night at about 4, it seemed she was finally on the mend. Once I knew she was ok, I allowed myself to shut my eyes, hoping for a few hours before the little man called for me.
To say I was looking forward to a nap not long after I awoke the next morning was an understatement! Still, I was pretty happy that after three days she was actually asking to eat. I didn't care what she wanted, I would make anything. After polishing off two plain pink pancakes she scurried off to play with her sister.
Balance was returning to our house when the phone rang. It was our immunologist. I was caught off guard. Shouldn't examining the specimen and running tests take longer? I knew she would be calling, but in my mind I was prepared for a call in the afternoon. Without hesitation, I was informed that due to the biopsy findings the game had changed. The presence of a granuloma in addition to his other labs meant that Cole matched criteria for a disease they were not looking at before.
CGD, or Chronic Granulomatous Disease is now the illness they are considering. Our physician explained that CGD is another rare primary immunodeficiency disease that would require a lifetime of medication and limits to activities as well as a possible bone marrow transplant. Luckily, the test for this disease could be done here in Buffalo. We would need to go to Children's for a test sometime this morning or wait until Monday since the expert would need two consecutive days to work with the live cells. If we went today, we would know by the end of the week. Needless to say, running on adrenaline and caffeine I packed up the baby and off we went.
On my way, my head was just spinning with a million what ifs. The happy chatter from my little man only made my thoughts race faster. How could any of this be? Honestly, in this moment I could feel the anger pumping its way through my veins in a way I have never felt in my life. Maybe it was the lack of sleep over the past week, since it seems I've been able to divert this feeling for some time. Logically I know, CGD may not be what he has, but I still couldn't stop the feeling of fury as I thought of what his future might be if this test comes back as a positive.
My red passion melted quickly with a good song and the giggling drifting through the car from the back seat. I'm convinced he was laughing at my singing ability or lack thereof by the way. The more I thought about it, I realized and understood that I was not angry, just absolutely terrified of what may lie ahead. Not just all the medical stuff, but afraid of the heartbreak that could hit everyone we love. While valid, these are not places I wanted to let my mind to inhabit.
As I arrived at the hospital and held my precious child in my arms I vowed that no matter what I was feeling, each day would be cheerful, not just for Cole, but for the girls and Nick and I as well. We would be optimistic and trust that all of this is happening for a reason. I've even gone back to reminding myself daily not to dwell on what I cannot change, to lessen the risk of being consumed by worry so I am not gasping for breath like a fish out of water. Instead, I will not look too far down the road when I don't have to, just take things one day at a time, one moment at a time, one breath at a time so I can stay in the eye of this storm.
Don't worry, as we wait, I am practicing my deep breathing in between belting out some silly songs as all the kids giggle.
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