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.
Wednesday, February 22, 2012
Tidbits
Yes, I know it is late, or rather early, but as I monitor Paige's fever, I figure it's a good time to share a few tidbits with you.
First, my guest blog about our family traditions on Makingofamom.com should be posted later today. Please check it out and let me know what you think. While you are there, take a few minutes to peruse Stefanie's site, I love her growing list of book reviews, crafts, and recipes. There is something there for all us moms, dads too!
Secondly, we did get a small morsel of news today from Cole's biopsies. They did find a granuloma, which could indicate a few things. G.i. shared their thoughts, however was awaiting further testing and feedback from our immunologist. We were assured that they would be calling sometime Wednesday with more information regarding this finding as well as the results of the Cincinnati blood tests.
I wish I had more to share, but now the tidbits are all I've got.
First, my guest blog about our family traditions on Makingofamom.com should be posted later today. Please check it out and let me know what you think. While you are there, take a few minutes to peruse Stefanie's site, I love her growing list of book reviews, crafts, and recipes. There is something there for all us moms, dads too!
Secondly, we did get a small morsel of news today from Cole's biopsies. They did find a granuloma, which could indicate a few things. G.i. shared their thoughts, however was awaiting further testing and feedback from our immunologist. We were assured that they would be calling sometime Wednesday with more information regarding this finding as well as the results of the Cincinnati blood tests.
I wish I had more to share, but now the tidbits are all I've got.
Tuesday, February 21, 2012
Interaction
My post on Facebook about our fasnachts got lots of feedback as well as requests for the recipe. As I made our customary Fat Tuesday treat with Gwyn, I wondered what unique traditions other people have, not just for today, or those that are food related, just different traditions.
Those of you that know me understand that in addition to baking and cooking, writing and yes, even just editing for someone are activities that distract me when I need to turn my brain off from worry. I love getting lost in a work, watching my words scroll across a page, waiting for someone's eyes to flow in their current, just as much as when a book possesses the magic to dissolve time.
With all of that, I also enjoy good conversation about fiction and non-fiction alike, I suppose that is why I am an English teacher.
So with that thought, and in anticipation of my guest post I have written for the blog Making of a Mom about traditions, I am asking you to help distract me, and give me some interaction here on this blog.
What unique traditions do you have with your family?
What have you passed down from your childhood to your children?
What new traditions have you started with your family or friends?
Ask your kids what their favorite tradition is. It was fun to hear what my girls had to say when I asked them, and the perspective of a child can be refreshing, humorous, and eye-opening.
Feel free to answer as many or as few questions as you want. On this day of indulgence, humor me in my assignment, after all, I've got teacher's withdrawal. :)
Those of you that know me understand that in addition to baking and cooking, writing and yes, even just editing for someone are activities that distract me when I need to turn my brain off from worry. I love getting lost in a work, watching my words scroll across a page, waiting for someone's eyes to flow in their current, just as much as when a book possesses the magic to dissolve time.
With all of that, I also enjoy good conversation about fiction and non-fiction alike, I suppose that is why I am an English teacher.
So with that thought, and in anticipation of my guest post I have written for the blog Making of a Mom about traditions, I am asking you to help distract me, and give me some interaction here on this blog.
What unique traditions do you have with your family?
What have you passed down from your childhood to your children?
What new traditions have you started with your family or friends?
Ask your kids what their favorite tradition is. It was fun to hear what my girls had to say when I asked them, and the perspective of a child can be refreshing, humorous, and eye-opening.
Feel free to answer as many or as few questions as you want. On this day of indulgence, humor me in my assignment, after all, I've got teacher's withdrawal. :)
Sunday, February 19, 2012
Drained
TGIF, even better, that it is family movie and pj night. While cleaning up dinner I think it finally hit me just how drained I am today, like I've been running on empty without knowing it for some time.
Nick told me to take a few minutes to myself, just to relax, so here I sit, with a nice cup of tea. To be honest, I don't want the tea, just the hot mug. There's something soothing about holding a warm cup of anything especially when the heat begins to spread from your palms, infectiously radiating like the intensifying morning sun.
As parents, no matter what you are in the middle of, whether it be something stressful, like we are dealing with, or just every day life, I think we all need to stop to take a few minutes to re-energize. In the past, that meant a date night or even getting together with family or friends and their kids and letting them play while the adults hung out, which we can't really do and we miss. So, for me these days, that means either sleep, a quiet cup of coffee and a book to decompress, or a quick card game with Nick.
I know tomorrow my batteries will be recharged, but for tonight I will give in to this exhaustion and go to bed, instead of just falling asleep in the living room, again. Besides, I need to be ready for all the winter break activities, especially the faschnaut making, the girls' makeover day, and the big winter indoor camp out!
As parents, no matter what you are in the middle of, whether it be something stressful, like we are dealing with, or just every day life, I think we all need to stop to take a few minutes to re-energize. In the past, that meant a date night or even getting together with family or friends and their kids and letting them play while the adults hung out, which we can't really do and we miss. So, for me these days, that means either sleep, a quiet cup of coffee and a book to decompress, or a quick card game with Nick.
I know tomorrow my batteries will be recharged, but for tonight I will give in to this exhaustion and go to bed, instead of just falling asleep in the living room, again. Besides, I need to be ready for all the winter break activities, especially the faschnaut making, the girls' makeover day, and the big winter indoor camp out!
Friday, February 17, 2012
Comfort
After last week's flurry of phone calls, tests, and anticipation, my insomnia made sense. As I exhaustedly settled the kids in for the night I was certain I would sleep well. Even when I fell asleep during the one show I watch religiously, I was sure the night was bound to be a restful one, finally.
Here is it, 3:20 a.m. and I am wide awake, seriously contemplating coffee. I'd like to work out but do not want to break the silent spell cast over the house. Instead I will write.
Yesterday was a divide and conquer sort of day. Even though it would have been great for both of us to be at the hospital, Nick and I are trying our hardest to keep some sort of normalacy for the girls as often as possible. We decided he would stay home to take care of them while I went to the hospital with Cole.
After our typical morning routine, the girls went off to school with Daddy and Cole and I headed to Children's. Once we arrived, we were shuffled from admissions to pre-op, then from waiting room to waiting room. Luckily there was plenty of activity throughout each stop to observe. I cannot believe the way some people treat the nurses there to help their kids. I was embarrassed for the couple scolding and swearing at every nurse they saw because their doctor had an emergency surgery which pushed back their son's scheduled time. Yes, I am sure it was frustrating, I wasn't thrilled to wait two hours for Cole's procedure as he clung to me for dear life in between his crying, but yelling at people who genuinely care isn't productive either.
Needless to say, I was pretty happy to move from the pre/post op floor to the surgical floor. I met with Cole's g.i. doctor and her fellow, then the anesthesiologist before my handing over my sleeping angel to the nurse. Anesthesia assured me they'd take good care of him then told me to get a cup of coffee, it was going to be a long afternoon.
As my baby's cry faded the further the nurse walked down the hall, I folded his blankie and made my way to the cafeteria as if I were on autopilot. I grabbed my drink, then settled back into my chair to wait.
This was the only time that flying solo was tough. I was texting Nick the whole time, so I didn't feel alone, but I was so nervous I just couldn't sit still. It wasn't even the procedure itself, it was the drug induced sleep that scared me more than anything.
Finally, the doctors came out. Together they led me to the consultation room. Explanation was swift as we moved through the pictures. The good news, the number of nodules did not appear to increase and the inflammation seemed to decrease. The bad news, the number of nodules did not appear to decrease and they still lacked any other doctors who had ever seen this before, so they still could not say what they believed these nodules to be. Once again they took a number of biopsies. After the results come in, their plan is now to sit as a practice to discuss the findings, then consult with other physicians if necessary before moving forward with any different courses of treatment. The hope is that the new biopsies and the various function tests sent to Cincinnati would hold a key to unlocking this mystery and giving us a treasure, the path to a healthy boy.
The minutes moved like molasses between meeting with the doctors and being called into recovery.
To turn a corner and see your baby helplessly strapped down, hooked to monitors and ivs, yet tranquil is strange. He looked like a doll in the giant bed. The nurse informed me they did in fact have to insert a breathing tube during the procedure, so in addition to his other discomforts his throat would likely be sore as well.
As I waited for my little guy to stir, I couldn't help but think about how precious life is, not to mention just how fragile it can be. As I held his tiny hand, I was thankful he was safe, and wished this was the last time he would have to endure this for a while, even though in reality, I know it is not.
When he awoke he went right for my hair, his favorite lovey. I didn't mind as he grasped my locks like they were gold. The rest of the afternoon he faded in and out of his slumber on my chest. I just closed my eyes and rocked him, enjoying the peacefulness. You know, no matter how hard this can be at times, it is these quiet moments I will cling to, like Cole does to my hair, for they bring me comfort. Just like coming home to my girls running to greet me at the door with their giant hugs and my husband, waiting for me with a big kiss. They are the best medicine to melt away a trying day.
Here is it, 3:20 a.m. and I am wide awake, seriously contemplating coffee. I'd like to work out but do not want to break the silent spell cast over the house. Instead I will write.
Yesterday was a divide and conquer sort of day. Even though it would have been great for both of us to be at the hospital, Nick and I are trying our hardest to keep some sort of normalacy for the girls as often as possible. We decided he would stay home to take care of them while I went to the hospital with Cole.
After our typical morning routine, the girls went off to school with Daddy and Cole and I headed to Children's. Once we arrived, we were shuffled from admissions to pre-op, then from waiting room to waiting room. Luckily there was plenty of activity throughout each stop to observe. I cannot believe the way some people treat the nurses there to help their kids. I was embarrassed for the couple scolding and swearing at every nurse they saw because their doctor had an emergency surgery which pushed back their son's scheduled time. Yes, I am sure it was frustrating, I wasn't thrilled to wait two hours for Cole's procedure as he clung to me for dear life in between his crying, but yelling at people who genuinely care isn't productive either.
Needless to say, I was pretty happy to move from the pre/post op floor to the surgical floor. I met with Cole's g.i. doctor and her fellow, then the anesthesiologist before my handing over my sleeping angel to the nurse. Anesthesia assured me they'd take good care of him then told me to get a cup of coffee, it was going to be a long afternoon.
As my baby's cry faded the further the nurse walked down the hall, I folded his blankie and made my way to the cafeteria as if I were on autopilot. I grabbed my drink, then settled back into my chair to wait.
This was the only time that flying solo was tough. I was texting Nick the whole time, so I didn't feel alone, but I was so nervous I just couldn't sit still. It wasn't even the procedure itself, it was the drug induced sleep that scared me more than anything.
Finally, the doctors came out. Together they led me to the consultation room. Explanation was swift as we moved through the pictures. The good news, the number of nodules did not appear to increase and the inflammation seemed to decrease. The bad news, the number of nodules did not appear to decrease and they still lacked any other doctors who had ever seen this before, so they still could not say what they believed these nodules to be. Once again they took a number of biopsies. After the results come in, their plan is now to sit as a practice to discuss the findings, then consult with other physicians if necessary before moving forward with any different courses of treatment. The hope is that the new biopsies and the various function tests sent to Cincinnati would hold a key to unlocking this mystery and giving us a treasure, the path to a healthy boy.
The minutes moved like molasses between meeting with the doctors and being called into recovery.
To turn a corner and see your baby helplessly strapped down, hooked to monitors and ivs, yet tranquil is strange. He looked like a doll in the giant bed. The nurse informed me they did in fact have to insert a breathing tube during the procedure, so in addition to his other discomforts his throat would likely be sore as well.
As I waited for my little guy to stir, I couldn't help but think about how precious life is, not to mention just how fragile it can be. As I held his tiny hand, I was thankful he was safe, and wished this was the last time he would have to endure this for a while, even though in reality, I know it is not.
When he awoke he went right for my hair, his favorite lovey. I didn't mind as he grasped my locks like they were gold. The rest of the afternoon he faded in and out of his slumber on my chest. I just closed my eyes and rocked him, enjoying the peacefulness. You know, no matter how hard this can be at times, it is these quiet moments I will cling to, like Cole does to my hair, for they bring me comfort. Just like coming home to my girls running to greet me at the door with their giant hugs and my husband, waiting for me with a big kiss. They are the best medicine to melt away a trying day.
Thursday, February 16, 2012
Waiting Room
Tell me this-why isn't there a place where you can pace in a hospital? Better yet, where you can run? Maybe a track? The last thing I want or even need is to just sit. And I bet the couple yelling at the nurse who didn't do anything wrong could have used a place to burn off some steam.
I do appreciate the drink voucher and had sense enough to make it a decaf, otherwise I don't think I'd manage holding this iPod in my hands, let alone be able to type!
Anyway, here it is so far, Cole's currently in the operating room for his colonoscopy. The doctor said it would be and hour to an hour and a half. I will share what I can as soon as I can.
I do appreciate the drink voucher and had sense enough to make it a decaf, otherwise I don't think I'd manage holding this iPod in my hands, let alone be able to type!
Anyway, here it is so far, Cole's currently in the operating room for his colonoscopy. The doctor said it would be and hour to an hour and a half. I will share what I can as soon as I can.
Take Two
Today is colonoscopy number two. After two days of prep and a morning without anything I am wishing Cole's OR time was earlier than it is.
At first I thought this time would be easier, especially since he will drink from a cup now and then, but he refused after the first two cups so we had to go back to the syringe. Poor kid is so used to medicine plungers he drinks better from that than a cup! At least when he was thirsty. I hope he's clean enough, after he regurgitated the last of the prep all over the two of us Nick declared his prep done while I whisked the baby to the tub.
Little guy is still sleeping peacefully. I hate to wake him, but he can drink this morning for another half hour and I want him to have something since he refused pretty much everything he could have yesterday. At least the girls were good with not eating near him or attempting to give him anything. Before dinner last night they left the pantry door open so Cole grabbed two sleeves of Ritz crackers, whining as he waddled over to me with them. When he handed them to me I thanked him and he gave me the most puzzled look I have ever seen! At least he can have some today.
Here's hoping today goes smoothly, I will update here briefly if I have a chance while I am at Children's. Once again, I cannot thank all of you enough for your love and support, as our road stretches longer than I would have imagined knowing you are all there brings me calm.
Oh, and for those of you that know about take one, I did remember to pack extra clothes for myself.
At first I thought this time would be easier, especially since he will drink from a cup now and then, but he refused after the first two cups so we had to go back to the syringe. Poor kid is so used to medicine plungers he drinks better from that than a cup! At least when he was thirsty. I hope he's clean enough, after he regurgitated the last of the prep all over the two of us Nick declared his prep done while I whisked the baby to the tub.
Little guy is still sleeping peacefully. I hate to wake him, but he can drink this morning for another half hour and I want him to have something since he refused pretty much everything he could have yesterday. At least the girls were good with not eating near him or attempting to give him anything. Before dinner last night they left the pantry door open so Cole grabbed two sleeves of Ritz crackers, whining as he waddled over to me with them. When he handed them to me I thanked him and he gave me the most puzzled look I have ever seen! At least he can have some today.
Here's hoping today goes smoothly, I will update here briefly if I have a chance while I am at Children's. Once again, I cannot thank all of you enough for your love and support, as our road stretches longer than I would have imagined knowing you are all there brings me calm.
Oh, and for those of you that know about take one, I did remember to pack extra clothes for myself.
Sunday, February 12, 2012
Walking Outside
Every day is a new adventure it seems. Once we got the phone calls from both genetics and immunology informing us about Cole's results we were also instructed on the next series of steps we needed to take, immediately.
Now that Cole tested negative for NEMOS, there was still the mystery as to what was the root cause of his NK cell dysfunction. Our immunologist explained not only the case studies she had been comparing him to, but her contact with a leading physician and researcher at Cincinnati Children's Hospital. They stated we would need to take Cole for additional function tests as soon as possible. Besides the repeat NK cell test they would also be looking at his perforin/granzyme B functions as well as his IL-2 receptors. Just like the last time, the blood would be drawn here, then shipped to Cincinnati for evaluation.
In addition to the function tests, now that the genetic results were in, the gastrointestinal doctors wanted Cole's colonoscopy scheduled as quickly as possible. With a few calls, OR time was found and the procedure was scheduled for next week.
As I drove to our blood work appointment, I dreaded the draw. Not the screaming I knew was coming, but his face. The absolute look of betrayal when I have to hold him down, then the sheer terror in his eyes as he is pierced while tube after tube is filled with his blood just shatters my heart in a million pieces every single time! Luckily, today's phlebotomist was the best we've had up to this point. Unlike others, the first time was a charm and she was easily able to fill the seven tubes she needed without utilizing the syringes to suck additional blood from Cole's veins. Within a few minutes my baby was back in my arms, twirling my ponytail in his hand, his head lying on my shoulder.
It is truly incredible just how forgiving a little one can be. Here I struggled from the moment I knew he needed more blood work and in an instant it was like he had forgotten that I assisted the woman who had caused him such pain. Immediately I thought about the quote that "having children is to decide forever to have your heart go walking outside of your body."
Initially I realized what this meant not long after our first daughter, Paige, was born. She was colicky and I just had no idea what to do to soothe her. After a few days when nothing was working I felt like I was doing something wrong. Unless we were hiking it seemed like she cried 24/7. My heart ached terribly when I saw my friends with happy babies while mine was so sad. Fortunately, as she grew, she also grew out of her colic. About that time, I needed to return to work and leave her which caused me a worry like I had never experienced. After a few weeks, I knew she would be ok, after all, she was home with her dad. Still, the idea that as her mom, I could not always be there each and every second she might need me broke my heart. I wanted to be able to keep her safe from anything that could cause her pain, like when she was safely growing in my belly. In the end I knew I could not shelter her from the world, that in order for her to grow and learn she would have successes and failures, and in both, joy and pain. So while I would worry and share in her disappointments, I would also be proud of her achievements as she grew into an independent child, one learning to make choices and live with the consequences, with and without my help as the situations would allow.
While more of my heart left my chest with babies two and three, I realized this feeling would not subside and was a natural one for any parent. There is nothing like the love a parent has for a child not to mention the lengths we parents will go to keep our children safe and free from pain.
While I still ache when I can't stop Cole's agony or afflictions, I know he is surrounded by love and in good hands, which is the most I can ask for, not just for him, but for all my kids. No matter what they may endure in their lives, whether I am with them physically or not, a piece of my heart will always be with each of them wherever they may roam. For this week, it means mine will be walking around a few classrooms and in a hospital operating room while I sit nervously in the waiting room, anxiously hoping for answers.
In addition to the function tests, now that the genetic results were in, the gastrointestinal doctors wanted Cole's colonoscopy scheduled as quickly as possible. With a few calls, OR time was found and the procedure was scheduled for next week.
As I drove to our blood work appointment, I dreaded the draw. Not the screaming I knew was coming, but his face. The absolute look of betrayal when I have to hold him down, then the sheer terror in his eyes as he is pierced while tube after tube is filled with his blood just shatters my heart in a million pieces every single time! Luckily, today's phlebotomist was the best we've had up to this point. Unlike others, the first time was a charm and she was easily able to fill the seven tubes she needed without utilizing the syringes to suck additional blood from Cole's veins. Within a few minutes my baby was back in my arms, twirling my ponytail in his hand, his head lying on my shoulder.
It is truly incredible just how forgiving a little one can be. Here I struggled from the moment I knew he needed more blood work and in an instant it was like he had forgotten that I assisted the woman who had caused him such pain. Immediately I thought about the quote that "having children is to decide forever to have your heart go walking outside of your body."
Initially I realized what this meant not long after our first daughter, Paige, was born. She was colicky and I just had no idea what to do to soothe her. After a few days when nothing was working I felt like I was doing something wrong. Unless we were hiking it seemed like she cried 24/7. My heart ached terribly when I saw my friends with happy babies while mine was so sad. Fortunately, as she grew, she also grew out of her colic. About that time, I needed to return to work and leave her which caused me a worry like I had never experienced. After a few weeks, I knew she would be ok, after all, she was home with her dad. Still, the idea that as her mom, I could not always be there each and every second she might need me broke my heart. I wanted to be able to keep her safe from anything that could cause her pain, like when she was safely growing in my belly. In the end I knew I could not shelter her from the world, that in order for her to grow and learn she would have successes and failures, and in both, joy and pain. So while I would worry and share in her disappointments, I would also be proud of her achievements as she grew into an independent child, one learning to make choices and live with the consequences, with and without my help as the situations would allow.
While more of my heart left my chest with babies two and three, I realized this feeling would not subside and was a natural one for any parent. There is nothing like the love a parent has for a child not to mention the lengths we parents will go to keep our children safe and free from pain.
While I still ache when I can't stop Cole's agony or afflictions, I know he is surrounded by love and in good hands, which is the most I can ask for, not just for him, but for all my kids. No matter what they may endure in their lives, whether I am with them physically or not, a piece of my heart will always be with each of them wherever they may roam. For this week, it means mine will be walking around a few classrooms and in a hospital operating room while I sit nervously in the waiting room, anxiously hoping for answers.
Thursday, February 9, 2012
Exhaling
Sometimes you don't realize how long you've been holding your breath until you finally let it out.
Just as I was getting the two little ones settled in for lunch the phone rang.
Finally, the phone call we had been waiting for. Cole's genetic test results had arrived. The chromosomes analyzed were absolutely perfect, not a single mutation was found in his sequencing, which meant he does not have NEMOS.
Now a day later, I still can't find the words to fully express the relief I felt in this moment.
I remember closing my eyes and exhaling deeply, letting go of the worry for the time being.
Until tomorrow we will relax, falling into the comfort of this sigh for a just a moment before the marathon begins and I am holding my breath again.
Just as I was getting the two little ones settled in for lunch the phone rang.
Finally, the phone call we had been waiting for. Cole's genetic test results had arrived. The chromosomes analyzed were absolutely perfect, not a single mutation was found in his sequencing, which meant he does not have NEMOS.
Now a day later, I still can't find the words to fully express the relief I felt in this moment.
I remember closing my eyes and exhaling deeply, letting go of the worry for the time being.
Until tomorrow we will relax, falling into the comfort of this sigh for a just a moment before the marathon begins and I am holding my breath again.
Monday, February 6, 2012
Quarantine
Quarantine is defined as a strict isolation imposed to prevent the spread of disease.
It's also why my four year old rolls her eyes at me when I tell her to wash her hands again, because the quick splash through the streaming sink certainly was not enough. Not to mention the extra loads of laundry because I make the girls change their clothes after being anywhere public.
Do I believe I'm become a germophobe? Now that I'm asking anyone that wants to see us even without Cole if they have a cold, I do believe I have.
When Cole was in the NICU we were told to keep him away from any germs and keep him warm since he still might have issues both staying warm and fighting off any infections. We cancelled Christmas and New Year's plans, instead opting to hibernate and wait for spring.
To be honest, while we missed getting together with people, we slowed down and just enjoyed one another as we settled into our life as five.
As the snow disappeared, we left our cave, ready to rejoin the rest of the world.
Exploring outside was always an adventure! As Cole's awareness awoke, the girls loved sharing their favorite festivities with their brother. Books in the shade, jogs in the park, and dips in the pool with friends and family made for one fantastic summer.
While the air began to cool and the leaves began to crunch, Cole's situation was becoming more mysterious. Once again, doctors advised us to keep his exposure to germs at a minimum. Now that teething was in full swing and everything found its way to Cole's mouth, this would be a challenge in any environment out of our control.
For the second winter we wrapped ourselves inside, armed with Lysol and "magic soap" for decontamination as well as crafts and games to ward away cabin fever.
Luckily, this winter has been a mild one. Bundling up and getting outside during the warm spells has provided us all with a breath of fresh air. The brisk walks keep Cole out of harm's way while giving us one thing we can still all do together as we wait for cold and flu season to subside.
Even though it's been difficult to not always go where we want to go as a family, we've been making the most of the situation. Gwyneth is honing her skills as a card shark and Paige's creativity has been blossoming as she sketches her ideas for The Next Great Baker.
When life begins flashing at the speed of light again, I know I will miss these quiet days. For now, I will cherish the time we have had to grow together, to really stop and just focus on the most important thing in my life, my family. And someday, I hope the kids will laugh when they remember the year mommy was crazy and followed them everywhere with the bottle of Purell.
To be honest, while we missed getting together with people, we slowed down and just enjoyed one another as we settled into our life as five.
As the snow disappeared, we left our cave, ready to rejoin the rest of the world.
Exploring outside was always an adventure! As Cole's awareness awoke, the girls loved sharing their favorite festivities with their brother. Books in the shade, jogs in the park, and dips in the pool with friends and family made for one fantastic summer.
While the air began to cool and the leaves began to crunch, Cole's situation was becoming more mysterious. Once again, doctors advised us to keep his exposure to germs at a minimum. Now that teething was in full swing and everything found its way to Cole's mouth, this would be a challenge in any environment out of our control.
For the second winter we wrapped ourselves inside, armed with Lysol and "magic soap" for decontamination as well as crafts and games to ward away cabin fever.
Luckily, this winter has been a mild one. Bundling up and getting outside during the warm spells has provided us all with a breath of fresh air. The brisk walks keep Cole out of harm's way while giving us one thing we can still all do together as we wait for cold and flu season to subside.
Even though it's been difficult to not always go where we want to go as a family, we've been making the most of the situation. Gwyneth is honing her skills as a card shark and Paige's creativity has been blossoming as she sketches her ideas for The Next Great Baker.
When life begins flashing at the speed of light again, I know I will miss these quiet days. For now, I will cherish the time we have had to grow together, to really stop and just focus on the most important thing in my life, my family. And someday, I hope the kids will laugh when they remember the year mommy was crazy and followed them everywhere with the bottle of Purell.
Thursday, February 2, 2012
Still Reflecting
When we left the g.i. office I was at a loss. A baby is not supposed to be sick. Their new life should be full of wonder, discovery, and vigor, not white coats and needles. Not to mention the now shattered faith I had in the doctors to give us answers, not just more questions.
After the appointment, I dropped Nick and Cole at home because I needed to be alone. As I drove to the hospital pharmacy, anger and confusion took turns swelling over me like waves before ultimately receding to sadness for my son. Why did he have to endure all of this? Why couldn't it be me instead?
I picked up his medicine, but didn't start it that evening because he had a fever. I wanted to be sure he was alright before introducing anything else into his little body. The next day the pharmacy called and was relieved to hear we hadn't begun since the dosing on two of the medications was incorrect. Once we had been apologized to profusely and told correct amounts, we called the doctor to double check again. They assured us it was right.
A few days later one of the gastro doctors called us to check on Cole. It was at this point we learned they were consulting with another doctor in Montreal. His advice was to see an immunologist as soon as possible. The g.i. doctor had already made us an appointment for the following week.
Before the physical, the doctor had many questions about Cole's journey. She discussed her observations about Cole based on his previous tests and her exam. After ordering more blood work to check a few things she told us it was nice to meet us, then, wished us luck since she didn't anticipate the need to see us again.
Imagine my surprise when checking in at the hospital for his appointment and finding her waiting for us. A few outstanding blood tests had returned since we had met and she explained the need to have additional screens run on Cole. One of these tests would go to Roswell Park, not because he had cancer, but because of their expertise in what she was looking to have analyzed. Another would have to be drawn the following week and sent to the Cincinnati Children's Hospital to check something called NK cell function.
While the nurses poked around, commenting on the atrocious state of his veins as he wiggled and wailed, I tried without success to calm Cole with his favorite song, Five Little Monkeys.
All of it hit me in that moment, the past week of expedited appointments and tests, the idea of sending specimens to Roswell and Cincinnati, the g.i. doctor's echo that they had never seen anything quite like this and yet another blood battle, it was like being hurled into a brick wall. Here I began the day thinking we were just having precautionary tests. Within minutes the new detour had thrown me for a loop, leaving me grasping to understand the bits of new information about what NK cells were and what they were hoping to find in these tests, which now felt anything but routine.
Once again, we waited.
The phone call came a few weeks later. Overall, most of the tests were in the normal range, which was a good thing, but the test from Cincinnati was alarming. Cole's NK cells were severely dysfunctional. In other words, his immune system was not working the way it should be. The good news was that he had some function, which was better than the zero that some kids have.
With such low function, as well as Cole's other symptoms, immunology suspected Cole might have a primary immunodeficiency. They referred us to genetics in order to have a test for a rare genetic disorder called NEMOS.
Days dragged as we waited for our appointment, little did we know what kind of wait we were in for.
This appointment was unlike the others. Most of the time we met with a genetic counselor. First, she built an extensive family tree, outlining all medical conditions we were aware of in a few generations of our extended families. Then she explained exactly why Cole was having the test and how results were formulated. Results would take between 4- 6 weeks, maybe longer, since there were more than 20,000 pairs of chromosomal code to be analyzed. Even after the test was complete, results could need further interpretation by comparing them to the genetic codes of my siblings and me.
Once we were clear on what exactly NEMOS was, why the disorder was suspected, and what the testing entailed, we met the doctor. She was compassionate, swiftly completing her assessment while warmly addressing our concerns and giving us advice. After she finished, we signed consent forms for the test and were moved to another waiting room before the blood draw.
This time I let Daddy do the honors as I snuck over to the hospital pharmacy to pick up refills. When the draw was done, we left, emotionally exhausted from the day, with answers seemingly ages away.
Which brings us to today. We are still waiting. Each time the phone rings and I see a doctor's number on the caller id my heart skips a beat.
Throughout all of this, we've faced other challenges. We've continued the food fight, but learned Cole loves bananas and venison, luckily, not together. We've struggled with developmental delays, however he makes a little progress every day and is catching up. We've even come up with a few tricks to get Cole to take his medicines so I am no longer wearing them as my latest accessory.
In the meantime, like other parents, we've been celebrating milestones. Cole's first birthday and first steps, weight gain after a month of weight loss, his literal burst of mobility after the magic course of steroids, and the first full night of sleep.
Every day is different, some much better than others. Yet each day brings out more of his emerging personality, one filled with antics, and let me tell you, with Cole and his sisters, we will never lack for laughter, even in these uncertain times.
After the appointment, I dropped Nick and Cole at home because I needed to be alone. As I drove to the hospital pharmacy, anger and confusion took turns swelling over me like waves before ultimately receding to sadness for my son. Why did he have to endure all of this? Why couldn't it be me instead?
I picked up his medicine, but didn't start it that evening because he had a fever. I wanted to be sure he was alright before introducing anything else into his little body. The next day the pharmacy called and was relieved to hear we hadn't begun since the dosing on two of the medications was incorrect. Once we had been apologized to profusely and told correct amounts, we called the doctor to double check again. They assured us it was right.
A few days later one of the gastro doctors called us to check on Cole. It was at this point we learned they were consulting with another doctor in Montreal. His advice was to see an immunologist as soon as possible. The g.i. doctor had already made us an appointment for the following week.
Before the physical, the doctor had many questions about Cole's journey. She discussed her observations about Cole based on his previous tests and her exam. After ordering more blood work to check a few things she told us it was nice to meet us, then, wished us luck since she didn't anticipate the need to see us again.
Imagine my surprise when checking in at the hospital for his appointment and finding her waiting for us. A few outstanding blood tests had returned since we had met and she explained the need to have additional screens run on Cole. One of these tests would go to Roswell Park, not because he had cancer, but because of their expertise in what she was looking to have analyzed. Another would have to be drawn the following week and sent to the Cincinnati Children's Hospital to check something called NK cell function.
While the nurses poked around, commenting on the atrocious state of his veins as he wiggled and wailed, I tried without success to calm Cole with his favorite song, Five Little Monkeys.
All of it hit me in that moment, the past week of expedited appointments and tests, the idea of sending specimens to Roswell and Cincinnati, the g.i. doctor's echo that they had never seen anything quite like this and yet another blood battle, it was like being hurled into a brick wall. Here I began the day thinking we were just having precautionary tests. Within minutes the new detour had thrown me for a loop, leaving me grasping to understand the bits of new information about what NK cells were and what they were hoping to find in these tests, which now felt anything but routine.
Once again, we waited.
The phone call came a few weeks later. Overall, most of the tests were in the normal range, which was a good thing, but the test from Cincinnati was alarming. Cole's NK cells were severely dysfunctional. In other words, his immune system was not working the way it should be. The good news was that he had some function, which was better than the zero that some kids have.
With such low function, as well as Cole's other symptoms, immunology suspected Cole might have a primary immunodeficiency. They referred us to genetics in order to have a test for a rare genetic disorder called NEMOS.
Days dragged as we waited for our appointment, little did we know what kind of wait we were in for.
This appointment was unlike the others. Most of the time we met with a genetic counselor. First, she built an extensive family tree, outlining all medical conditions we were aware of in a few generations of our extended families. Then she explained exactly why Cole was having the test and how results were formulated. Results would take between 4- 6 weeks, maybe longer, since there were more than 20,000 pairs of chromosomal code to be analyzed. Even after the test was complete, results could need further interpretation by comparing them to the genetic codes of my siblings and me.
Once we were clear on what exactly NEMOS was, why the disorder was suspected, and what the testing entailed, we met the doctor. She was compassionate, swiftly completing her assessment while warmly addressing our concerns and giving us advice. After she finished, we signed consent forms for the test and were moved to another waiting room before the blood draw.
This time I let Daddy do the honors as I snuck over to the hospital pharmacy to pick up refills. When the draw was done, we left, emotionally exhausted from the day, with answers seemingly ages away.
Which brings us to today. We are still waiting. Each time the phone rings and I see a doctor's number on the caller id my heart skips a beat.
Throughout all of this, we've faced other challenges. We've continued the food fight, but learned Cole loves bananas and venison, luckily, not together. We've struggled with developmental delays, however he makes a little progress every day and is catching up. We've even come up with a few tricks to get Cole to take his medicines so I am no longer wearing them as my latest accessory.
In the meantime, like other parents, we've been celebrating milestones. Cole's first birthday and first steps, weight gain after a month of weight loss, his literal burst of mobility after the magic course of steroids, and the first full night of sleep.
Every day is different, some much better than others. Yet each day brings out more of his emerging personality, one filled with antics, and let me tell you, with Cole and his sisters, we will never lack for laughter, even in these uncertain times.
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