Carpe Diem.
That is where I am today.
Join me.
Thursday, August 30, 2012
Wednesday, August 29, 2012
Lemonade
Long weekend.
Cole was plagued by fever, his only request, "train." Needless to say, much of our time was spent rumbling our way to the North Pole on the Polar Express.
Luckily, it is merely an ear infection, so we are just trying to keep him from gagging on his antibiotic. Unfortunately we are dealing with a new side effect. With his abhorrence of the latest drug, Cole is now refusing all his other medications, which has ensued in an exhausting chase and struggle three times a day.
In the meantime, I've been thinking about the magic silver bell and the fleeting nature of childhood innocence. As a parent, I have wanted my kids to have lasting memories, as well as traditions that they will carry on to share with their children. Throughout the past two years, as we have had to make changes, I have often wondered if our situation was taking away from our kids' experiences, stealing part of their innocence, having them grow up before they needed to. Believe me, at the beginning I wrestled with this idea, and a self-imposed guilt that I was not accomplishing my personal goals as a parent. Then, when the girls asked if they could have a lemonade stand to help kids like Cole I realized, while our situation is unique, it has not robbed the girls of anything, but given them the opportunity to truly be empathetic, not egocentric. Not only is their compassion growing like the Grinch's heart, but I can see they have learned a great deal about making lemonade from lemons as well as the unconditional love of family. That above all, we will do anything for each other, no matter what the price, we will always be there for them first.
That I think is one of the best lessons I can teach them as a parent, and I hope if they ever have to endure a hardship as parents, they look back and remember how Nick and I managed. Hopefully we are providing a good example to follow as we continue to forge ahead, chugging along our track.
Cole was plagued by fever, his only request, "train." Needless to say, much of our time was spent rumbling our way to the North Pole on the Polar Express.
Luckily, it is merely an ear infection, so we are just trying to keep him from gagging on his antibiotic. Unfortunately we are dealing with a new side effect. With his abhorrence of the latest drug, Cole is now refusing all his other medications, which has ensued in an exhausting chase and struggle three times a day.
In the meantime, I've been thinking about the magic silver bell and the fleeting nature of childhood innocence. As a parent, I have wanted my kids to have lasting memories, as well as traditions that they will carry on to share with their children. Throughout the past two years, as we have had to make changes, I have often wondered if our situation was taking away from our kids' experiences, stealing part of their innocence, having them grow up before they needed to. Believe me, at the beginning I wrestled with this idea, and a self-imposed guilt that I was not accomplishing my personal goals as a parent. Then, when the girls asked if they could have a lemonade stand to help kids like Cole I realized, while our situation is unique, it has not robbed the girls of anything, but given them the opportunity to truly be empathetic, not egocentric. Not only is their compassion growing like the Grinch's heart, but I can see they have learned a great deal about making lemonade from lemons as well as the unconditional love of family. That above all, we will do anything for each other, no matter what the price, we will always be there for them first.
That I think is one of the best lessons I can teach them as a parent, and I hope if they ever have to endure a hardship as parents, they look back and remember how Nick and I managed. Hopefully we are providing a good example to follow as we continue to forge ahead, chugging along our track.
Saturday, August 25, 2012
Processing
Yes, as a handful of you know, we have some answers. I have been trying to take it in and process where we are before writing.
Although we have a clue, in many ways, we still know very little. Basically a genetic mutation was found in CD-16 in one of Cole's blood marker tests. Doctors here believe this is the root cause of his nk cell dysfunction, yet they are waiting for further discussion with the consulting expert. As it was explained to us, at this point in time, Cole is only the eighth individual found to have this mutation. Keep in mind, many findings in immunology appear like this, as some of their studies are fairly new, with novel discoveries every year.
So far, this means nothing different for Cole. He is still very susceptile to the herpes class viruses like chicken pox or mono. For now, until we hear from Texas, his course of treatment is the same. Down the road, he will most likely be on an anti-viral regime to help ward against these invaders. Bone marrow transplantation is also an option, yet not what our phuscian is recommending at this time.
Since CD-16 has no connection to Cole's gi issues, our doctors are still persuing the IL-10 testing. Thanks to a very kind family across the country, our doctors have been able to contact the expert treating their son with the IL-10 receptor deficiency. Hopefully, this contact can offer our experts other avenues where they can explore their hypothesis since there have not been answers regarding studies where they have requested Cole to be a subject.
Clearly, we have had quite a bit to absorb this week, not to mention the ripple effect of choices and various emotions that are part of the package with this type of news. In the end, not much has changed, we've been doing what they've recommended now for a year, so this isn't really a new normal anymore, just our normal. Which, as long as the kids are thriving, I'm perfectly fine with.
Although we have a clue, in many ways, we still know very little. Basically a genetic mutation was found in CD-16 in one of Cole's blood marker tests. Doctors here believe this is the root cause of his nk cell dysfunction, yet they are waiting for further discussion with the consulting expert. As it was explained to us, at this point in time, Cole is only the eighth individual found to have this mutation. Keep in mind, many findings in immunology appear like this, as some of their studies are fairly new, with novel discoveries every year.
So far, this means nothing different for Cole. He is still very susceptile to the herpes class viruses like chicken pox or mono. For now, until we hear from Texas, his course of treatment is the same. Down the road, he will most likely be on an anti-viral regime to help ward against these invaders. Bone marrow transplantation is also an option, yet not what our phuscian is recommending at this time.
Since CD-16 has no connection to Cole's gi issues, our doctors are still persuing the IL-10 testing. Thanks to a very kind family across the country, our doctors have been able to contact the expert treating their son with the IL-10 receptor deficiency. Hopefully, this contact can offer our experts other avenues where they can explore their hypothesis since there have not been answers regarding studies where they have requested Cole to be a subject.
Clearly, we have had quite a bit to absorb this week, not to mention the ripple effect of choices and various emotions that are part of the package with this type of news. In the end, not much has changed, we've been doing what they've recommended now for a year, so this isn't really a new normal anymore, just our normal. Which, as long as the kids are thriving, I'm perfectly fine with.
Tuesday, August 21, 2012
Today
Today should be interesting to say the least.
After finally tucking myself in after midnight, Paige was still awake with Nick. I have about ten minutes before I need to wake her from her sleepy slumber. She is the last of the kids I like to have deprived of her rest, she is downright GRUMPY! However she was thrilled that a doctor told her to stay up as late as she could just this once. Easy, successful prep.
For years, Paige has woken at night. Not just a quick stir, a someone is stabbing me, terrified screaming, kicking, thrashing kind of nightmare wake up. The worst part about them, is that she does not fully waken, and does not remember a bit of it in the morning.
Initially, we were told it was night terrors, she would grow out of them. Once she started yelling about her legs, the belief was they were growing pains, and they wouldn't last too long. Now with the onset of her migraines, the neurologist we were sent to feels there may be a connection, thus the tests this morning. While she knows what to expect, I know she is nervous, especially since she wants to bring Pooh Bear with her. Hopefully he can go with her.
When she is finished, I need to come home and trade kids.
Cole needs to go to see immunology at the hospital. We had an appointment for this Thursday, but since he developed chicken pox like bumps across his torso, thighs, and a few other random places, in addition to a fever, they wanted to see him immediately, with the first appointment available we go today. We were given a list of reasons to go directly to the hospital, but so far he seems ok, irritable, but ok.
Very hopeful for a few things today. First, that this is not chicken pox. Secondly, that we finally have word from Houston as to what direction we need to move in. We've had test results for almost a month, yet not the analysis, so with any luck, today is the day the next leg of our marathon will start.
Time to play my role as mommy alarm clock! Have a great day everyone.
After finally tucking myself in after midnight, Paige was still awake with Nick. I have about ten minutes before I need to wake her from her sleepy slumber. She is the last of the kids I like to have deprived of her rest, she is downright GRUMPY! However she was thrilled that a doctor told her to stay up as late as she could just this once. Easy, successful prep.
For years, Paige has woken at night. Not just a quick stir, a someone is stabbing me, terrified screaming, kicking, thrashing kind of nightmare wake up. The worst part about them, is that she does not fully waken, and does not remember a bit of it in the morning.
Initially, we were told it was night terrors, she would grow out of them. Once she started yelling about her legs, the belief was they were growing pains, and they wouldn't last too long. Now with the onset of her migraines, the neurologist we were sent to feels there may be a connection, thus the tests this morning. While she knows what to expect, I know she is nervous, especially since she wants to bring Pooh Bear with her. Hopefully he can go with her.
When she is finished, I need to come home and trade kids.
Cole needs to go to see immunology at the hospital. We had an appointment for this Thursday, but since he developed chicken pox like bumps across his torso, thighs, and a few other random places, in addition to a fever, they wanted to see him immediately, with the first appointment available we go today. We were given a list of reasons to go directly to the hospital, but so far he seems ok, irritable, but ok.
Very hopeful for a few things today. First, that this is not chicken pox. Secondly, that we finally have word from Houston as to what direction we need to move in. We've had test results for almost a month, yet not the analysis, so with any luck, today is the day the next leg of our marathon will start.
Time to play my role as mommy alarm clock! Have a great day everyone.
Friday, August 17, 2012
Savor
Patience must be something I needed to practice. It has been two weeks since our latest results were sent to the consulting expert and we've yet to hear anything. I called our doctor last Friday, but they were also hearing crickets. Today is my day to call again.
The toughest part about it all is that we are stuck at an intersection with no map and no idea which direction to turn. I guess we will just dance under the streetlight.
Each day I am fascinated by each of the kids. Paige, who I still cannot believe is 7, now fiercely scoring goals at soccer practice instead of picking flowers. Gwyneth, brimming over with excitement to start kindergarten, where I know the transition will change her, make her a much more grown up five than she is here at home. And of course, Cole, whose emerging sense of humor, not just through movements, but in his little voice leaves us all laughing.
So, while I still have nothing to share, I am taking in the quiet moments in between all the noise of our saga, savoring the sweetness of our family one breath at a time.
Special thanks to our friend Justin Huett for the awesome pics of the kids by our fire last weekend. Your talent with a camera is amazing!
The toughest part about it all is that we are stuck at an intersection with no map and no idea which direction to turn. I guess we will just dance under the streetlight.
Each day I am fascinated by each of the kids. Paige, who I still cannot believe is 7, now fiercely scoring goals at soccer practice instead of picking flowers. Gwyneth, brimming over with excitement to start kindergarten, where I know the transition will change her, make her a much more grown up five than she is here at home. And of course, Cole, whose emerging sense of humor, not just through movements, but in his little voice leaves us all laughing.
So, while I still have nothing to share, I am taking in the quiet moments in between all the noise of our saga, savoring the sweetness of our family one breath at a time.
Special thanks to our friend Justin Huett for the awesome pics of the kids by our fire last weekend. Your talent with a camera is amazing!
Wednesday, August 8, 2012
Grateful
It breaks my heart to know there is another family in our shoes. At the same time, I am grateful they have been able to share so much of their journey with us as they are a few steps ahead of us at this point. While it might turn out that we are on different paths, so far there are similarities within our travels that give me hope that Cole is not an anomaly and someone will have some answers for us.
About a month ago, someone posted information about their young son who sounded just like Cole on a Crohn's post that I follow. As I read further, they discussed how the presentation in the intestines was like Crohn's but instead after their IL-10 test, found to be an immunodeficiency. This is the same IL-10 test our g.i. doctors would like run on Cole, however due to its novelty, have not been able to run.
Since their initial post, I have been in contact with this family. Their journey has been filled with challenges and hope. Their son, now two and a half, is preparing for his bone marrow transplant. Still, as they sit with their little one in the hospital, this family has been taking the time to reach out to us, share their story, and communicate with us about their doctors and tests, all while asking us about Cole.
Please, stop and think positive thoughts for this family and their son today. Their strength is astounding and I am so thankful for their support and kindness to us as they embark on such a difficult leg of their odyssey.
About a month ago, someone posted information about their young son who sounded just like Cole on a Crohn's post that I follow. As I read further, they discussed how the presentation in the intestines was like Crohn's but instead after their IL-10 test, found to be an immunodeficiency. This is the same IL-10 test our g.i. doctors would like run on Cole, however due to its novelty, have not been able to run.
Since their initial post, I have been in contact with this family. Their journey has been filled with challenges and hope. Their son, now two and a half, is preparing for his bone marrow transplant. Still, as they sit with their little one in the hospital, this family has been taking the time to reach out to us, share their story, and communicate with us about their doctors and tests, all while asking us about Cole.
Please, stop and think positive thoughts for this family and their son today. Their strength is astounding and I am so thankful for their support and kindness to us as they embark on such a difficult leg of their odyssey.
Tuesday, August 7, 2012
One Down
Today we had our follow up with the neurologist for Cole and initial visit for Paige.
Good news - another specialist down for Cole! Woo Hoo! His falling was attributed to the turning in of his feet. Now that he has had a bit more practice as a walker, runner, jumper, and general mover and shaker, he is doing much better. He still falls, but it not a neurological issue whatsoever! In this I am thankful.
For Paige, as her headaches have begun to intensify over the past few months and have started interfering with activities and sleep, her primary decided it would be a good idea to see the neurologist as well. At this point based on Paige's descriptions to the doctor as well as the exam, everything appears to be migraine related. Since she does not recall a great deal of her sleep disturbances, the neurologist is going to run an MRI and EEG to investigate further. The one thing I am not thrilled with at this point is his desire to place her on a very low dose sleeping medication prior to bed. I understand it will help a headache from starting in the night as well as to quell any terrors, but I am reluctant to medicate when there may be another way to help her. While I would love for her not to wake the way she does in the middle of the night as it is terrifying, yet I worry about unnecessary medications.
I guess we will wait to see what these tests have to say and just enjoy the fact that we can cross one more office visit off our lists for Cole.
Good news - another specialist down for Cole! Woo Hoo! His falling was attributed to the turning in of his feet. Now that he has had a bit more practice as a walker, runner, jumper, and general mover and shaker, he is doing much better. He still falls, but it not a neurological issue whatsoever! In this I am thankful.
For Paige, as her headaches have begun to intensify over the past few months and have started interfering with activities and sleep, her primary decided it would be a good idea to see the neurologist as well. At this point based on Paige's descriptions to the doctor as well as the exam, everything appears to be migraine related. Since she does not recall a great deal of her sleep disturbances, the neurologist is going to run an MRI and EEG to investigate further. The one thing I am not thrilled with at this point is his desire to place her on a very low dose sleeping medication prior to bed. I understand it will help a headache from starting in the night as well as to quell any terrors, but I am reluctant to medicate when there may be another way to help her. While I would love for her not to wake the way she does in the middle of the night as it is terrifying, yet I worry about unnecessary medications.
I guess we will wait to see what these tests have to say and just enjoy the fact that we can cross one more office visit off our lists for Cole.
Monday, August 6, 2012
Antsy
Wonderful hike with the kids and dog this morning followed by laundry and pool wall scrubbing.
Funny, I feel like I am a middle school girl, willing the phone to ring the day after the dance. Logically I know it may take a few days before we hear anything since the results were just sent to the expert on Thursday, yet I'm antsy.
There is much weighing on the information this call is bringing. We have placed a great deal of trust in our doctors, just hoping they are ready to share their expertise sooner than later!
Funny, I feel like I am a middle school girl, willing the phone to ring the day after the dance. Logically I know it may take a few days before we hear anything since the results were just sent to the expert on Thursday, yet I'm antsy.
There is much weighing on the information this call is bringing. We have placed a great deal of trust in our doctors, just hoping they are ready to share their expertise sooner than later!
Friday, August 3, 2012
On the Edge
Three weeks of waiting has finally come to an end. With its conclusion, we are still hanging, teetering with knowledge, yet on the edge of understanding. Although we have test results, until the consulting physician has the opportunity to analyze what has been found in this round, we honestly lack any kind of clue as to what these new developments may breathe into our lives.
Speaking to our immunologist today, we know that two of the various blood marker tests indicated low enzyme function. While neither are rock bottom, neither are normal. With these values, in addition to the nk cell dysfunction, all aspects of Cole's lab work must be carefully assessed before we can move forward.
According to the office here, they needed direction from their compass, the expert in Houston, to make sense of what these results implied, especially in the context of what he was suspecting. Based on his observations, we do know there may be another round of tests, including specific genetic tests. What we don't know is what exactly these next tests are looking for. Our hope is that these results provide a wealth of information giving this physician a clear picture of an underlying cause for Cole's immunological impairments and we are no longer looking for a needle in a haystack.
While we keep trying to wrap our minds around it all, the marbles keep rolling along the gray labyrinth walls of confusion. Our trust lies within the reputation and expertise of our distant doctor. We have faith that he can find the answers we are seeking. I look forward to the day when we can show our gratitude to him, as well as those in our teams of medical professionals and advocates who have taken a professional journey with us, yet treated us as family. The compassion many of these individuals have shown us has been tremendous, especially when to others we seem no more than just another number in line.
Thursday, August 2, 2012
Date
We do have more news, and I will write a bit later tonight. For now, Gwyn and I have a date for the movie in the park this evening, just the two of us. Well, we are meeting up with some friends, but she's looking forward to some one on one time with me, as I am with her. Enjoying the moments as they come. Do the same this evening my friends, the news will still be here.
Mixed
Mixed news yesterday.
CD-107A blood marker enzyme levels low. Unfortunately, they can not explain the reasons why or what it could indicate at this point until they have the results from another test needed for reference in regards to nk cell function levels. Then our doctor here needs to consult with the expert at Baylor before we will know more details.
I will share the rest soon, just need some time to relax this nap time.
Hugs to all.
CD-107A blood marker enzyme levels low. Unfortunately, they can not explain the reasons why or what it could indicate at this point until they have the results from another test needed for reference in regards to nk cell function levels. Then our doctor here needs to consult with the expert at Baylor before we will know more details.
I will share the rest soon, just need some time to relax this nap time.
Hugs to all.
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