Labs came back completely normal, yet Cole's bleeding is not subsiding.
At this point, doctors have a few ideas as to what could be causing this latest flare. First and foremost, they believe it could be a side effect of the medication he has been on over the past year and a half. So for now, we have stopped his meds to see if this helps stop the flare.
In the past, Cole was given a course of steroids to help with flare. Unfortunately, due to his diagnosed immunodeficiency they are no longer an option as they suppress his system, compromising the rest of his health.
After two days med free, the flare continues. We're trying our best to keep Cole comfortable. At two, it is still hard for him to tell us how he is feeling, although he's been irritable, clingy, and refusing most foods. Since he drinking, doctors feel he is ok for the time being.
For now, I just feel helpless. I want to do something to help him feel better, but really don't know what to do for him besides snuggling, reading and playing. Here's hoping while the winds are wicked today, things inside the house and Cole's little body wane into calm.
Thursday, January 31, 2013
Saturday, January 26, 2013
Happy news
Sorry about my hiatus, sometimes technology just is not cooperative.
It has been an amazing week in so many ways. Late Thursday afternoon, we finally got the call we'd been waiting for since October. The lab results were in from Toronto. Cole' s IL 10 analysis was normal! Such a relief to hear good news from a test. The lab is now moving forward with a whole exome study. Our immunologist says this will give a comprehensive view of a large portion of his genetic code, particularly pieces we have not seen. As they are still trying to pinpoint underlying causes of Cole' s issues, instead of continuing to single out genetic sequences one by one, this should provide faster information. Now begins the 3-6 month wait.
Houston has started to reanalyze for CD16. Even though Cole' s sample was atypical, the blood markers still indicate this is where they problem lies. In this further study, they are hoping to have information to share soon.
In the meantime, Cole is having a pretty significant flare. We spent yesterday back and forth to and from the lab as we had various specimens they were requesting. Again, in terms of his blood draw, Cole was such a trooper. One brave little boy.
So for now, again, we are patient. So much good medical news this week, and tremendous support from my extended West "family". Thanks to all of it, I've been able to slow down, catch my breath for a moment, and work on a few of my little projects, which I know are going to be big, just wait.
It has been an amazing week in so many ways. Late Thursday afternoon, we finally got the call we'd been waiting for since October. The lab results were in from Toronto. Cole' s IL 10 analysis was normal! Such a relief to hear good news from a test. The lab is now moving forward with a whole exome study. Our immunologist says this will give a comprehensive view of a large portion of his genetic code, particularly pieces we have not seen. As they are still trying to pinpoint underlying causes of Cole' s issues, instead of continuing to single out genetic sequences one by one, this should provide faster information. Now begins the 3-6 month wait.
Houston has started to reanalyze for CD16. Even though Cole' s sample was atypical, the blood markers still indicate this is where they problem lies. In this further study, they are hoping to have information to share soon.
In the meantime, Cole is having a pretty significant flare. We spent yesterday back and forth to and from the lab as we had various specimens they were requesting. Again, in terms of his blood draw, Cole was such a trooper. One brave little boy.
So for now, again, we are patient. So much good medical news this week, and tremendous support from my extended West "family". Thanks to all of it, I've been able to slow down, catch my breath for a moment, and work on a few of my little projects, which I know are going to be big, just wait.
Thursday, January 10, 2013
IL10
I forgot to mention that our immunologist received a message that the lab is analyzing Cole's IL10 tests next.
It's been difficult to be patient waiting for this set of results. Hope this part of the process is faster than the last!
It's been difficult to be patient waiting for this set of results. Hope this part of the process is faster than the last!
Well
Yesterday, Cole had an appointment with his GI doctors. Since he'd been flaring, I was pretty happy that we already had one scheduled.
As a whole, things went well. Luckily, he didn't lose any weight, however he didn't gain any either. In my opinion, the boy is just so busy he burns everything he eats! The kid never seems to slow down and can inhale two full size pieces of pizza when he is hungry. I can only imagine what I will be cooking during his teenage years!
Routine lab work was ok. Still continued vitamin deficiency issues despite his extra supplements, but nothing was a shock. We do have to repeat his urinalysis as there is an indication of possible kidney or bladder infections. GI was pretty calm about it, but after talking with our immunologist, they wanted the labs rushed since he also presented with a very low grade fever during his appointment.
We tried to get his sample last night before the labs closed, but it is tough to get a non-potty trained child to comply. Everything is ready to go this morning for a lab stop before an appointment for Paige. Busy day! At least dinner planned and set to go tonight.
I will keep you updated on lab results - hoping it was just a fluke and all is fine.
Saturday, January 5, 2013
Forward
Just the other day, I came across a quote on Facebook that hit a chord with me. "Some things are so unexpected that no one is prepared for them." Boy did Rosten hit that nail on the head!
Not so long ago, the current of my life was calmly flowing within the river I had built for it. Just as I always expected. Rising waters were all it took to breech the banks, creating a new tributary for this stream, which I certainly was not prepared for.
While I always felt this redirection was temporary, that the water would naturally make its way back home, what I didn't realize was that this new trickling creek was growing stronger as its own branch, adapting to the surrounding conditions.
Never did I think having another child would result in such a life change for me, taking me from what I knew, where I thought I thrived. Then again, never in a million years did I think anything would be wrong with one of our kids. It is a humbling experience to say the least.
As we have made our way over each obstacle in the road, my personal destination was within eyeshot. There seemed to be a clear path where I was heading back on course. Only a few unexpected turns would change all of it.
After considering every possibility, the dam in the way was just one that could not be passed.
To pause my career is necessary, the best choice for Cole. Still, making this choice has been bittersweet because of the "family" I was leaving behind. My heart broke to have to share this choice with many individuals who have shared the past twelve years of professional and personal joys and sorrows. After all, my school is one like no other, one giant family, supportive and loving beyond any regular workplace.
As difficult as this week has been, as lost as I have felt, I realized, while in a sense I was moving on, I was not leaving them behind as a part of my life. After many conversations, I knew, the bonds built in friendship would remain.
As I raft on the rapids in new company, I know the old is not far behind, still holding a place in my life, which fills my heart with love and warmth.
As I take a deep breath and move forward, to paraphrase Dr. Seuss, I will not cry because it is over, but smile because it happened. And I must say, there is a great deal within my WM chapters to smile about. <3
Not so long ago, the current of my life was calmly flowing within the river I had built for it. Just as I always expected. Rising waters were all it took to breech the banks, creating a new tributary for this stream, which I certainly was not prepared for.
While I always felt this redirection was temporary, that the water would naturally make its way back home, what I didn't realize was that this new trickling creek was growing stronger as its own branch, adapting to the surrounding conditions.
Never did I think having another child would result in such a life change for me, taking me from what I knew, where I thought I thrived. Then again, never in a million years did I think anything would be wrong with one of our kids. It is a humbling experience to say the least.
As we have made our way over each obstacle in the road, my personal destination was within eyeshot. There seemed to be a clear path where I was heading back on course. Only a few unexpected turns would change all of it.
After considering every possibility, the dam in the way was just one that could not be passed.
To pause my career is necessary, the best choice for Cole. Still, making this choice has been bittersweet because of the "family" I was leaving behind. My heart broke to have to share this choice with many individuals who have shared the past twelve years of professional and personal joys and sorrows. After all, my school is one like no other, one giant family, supportive and loving beyond any regular workplace.
As difficult as this week has been, as lost as I have felt, I realized, while in a sense I was moving on, I was not leaving them behind as a part of my life. After many conversations, I knew, the bonds built in friendship would remain.
As I raft on the rapids in new company, I know the old is not far behind, still holding a place in my life, which fills my heart with love and warmth.
As I take a deep breath and move forward, to paraphrase Dr. Seuss, I will not cry because it is over, but smile because it happened. And I must say, there is a great deal within my WM chapters to smile about. <3
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