As a mom, it is difficult to know there are times I just can't fix what is happening with my child. Honestly, I figured this day would come when one of the girls went through their first break up, not with my toddler, and certainly not about any medical concerns at this point in life.
There are times I truly feel helpless in terms of what to do when Cole is not feeling well. What makes it even more challenging is that at this point, he still says very little and on tough days, says less. Bouncing babble is replaced by agonizing screeches and writhing until he settles into a comfortable position. On these days, we often spend hours snuggling and pacing as they are the only activities that are able to soothe him.
As optimistic as I try to be, there are times I am frustrated. I just want to take this suffering away from Cole. While I don't have super human powers to eliminate his pain immediately, I can do something that has the power to change his life over time. I can help raise money for research against this terrible disease and start a team for the upcoming Crohn's and Colitis walk.
I have registered our team in Cole's honor to walk in the Take Steps for Crohn's & Colitis Walk this June. Take Steps is CCFA's national evening walk and celebration and the nation's largest event dedicated to finding cures for digestive diseases. It is a casual 2-3 mile stroll to raise money for crucial research, bringing us closer to a future free from Crohn's disease and ulcerative colitis.
Please consider joining our team, Cole's Crohnies, and help us take a few steps towards making life better for not only Cole, but others like him. Like the man throwing starfish back into the sea, while he couldn't save them all, he made a difference for them one at a time, and that is my goal, for us to work together to make a little bit of a difference every year so researchers can keep moving forward, striving towards a cure for these digestive diseases.
Thank you all for your constant prayers and support, they are our sea.
http://online.ccfa.org/site/TR/2012TakeStepsWalk/Chapter-WesternNewYork?px=2600658&pg=personal&fr_id=3199
Showing posts with label thank you. Show all posts
Showing posts with label thank you. Show all posts
Thursday, April 19, 2012
Friday, March 16, 2012
But
Never has there been a contradictory word that drives me crazy like the word 'but'. It's a nails on the chalkboard kind of crazy or like my apostrophes gone wild pet peeve with my middle school students who sprinkle their writing with them as if they are topping an ice cream sundae.
So when our immunologist started off with a positive, I waited for the other shoe to drop after she uttered the word 'but'.
To begin, we were told the good things Cole has going for him, that most of his immune system was wonderful, but there was a key part of it that does not function. This means that there are a particular class of viruses that could be life-threatening to him if he were to have exposure to them either directly or by the rest of the family having contact with them and bringing the shedded germs home.
However, due to the rarity of this nk cell dysfunction, the relative new nature of studying this disorder, as well as the limited amount of research in kids Cole's age, the actual diagnosis may not be solidified for another year. Before they will confirm this disorder with any kids, they usually have a least a year of poor nk cell tests, or at least six tests. At this point, Cole has only had two. Doctors also want to rule out the possibility that these results could stem from his g.i. disorder or class of drugs they are treating him with since there is a study that links the two with decreased nk cell function. Once again, our physician is unclear since there is only an old study dealing with adults and the information regarding kids like Cole and their nk cell studies just are not available so it is tough to truly tell us if their is a link or if he can just be diagnosed. For now, they are just classifying Cole as having an immunologic disorder.
With the information we have, we also need to make some decisions about the level of risk we are willing to take with Cole's immunizations. The majority of them are will be safe for him as they are killed vaccines, but any live vaccines can have life threatening complications for our little guy. For example, if we do go ahead with the chicken pox vaccine and see one little dot, we need to take action immediately without waiting to see what happens because things could go downhill quickly. At the same time, the benefit of the shot could outweigh the risk. Ultimately, we are gambling whether we get the shot or not.
Yet again, our immunologist has consulted another researcher. This doctor is in the process of leaving the east coast for another position in the southwest. If Cole's blood work next week shows he has not started to form and antibodies against the herpes class of viruses like chicken pox, Epstein Barr, etcetera we may need to meet with this doctor as we move forward.
In the meantime we are to do what we've been doing, keep up the limited exposure to everything, monitor what our older kids are exposed to, and wait. At least the weather is incredible so we pace a different perimeter.
While we continue in the holding pattern, we are desperately trying anything to bulk up this boy. In the past week he has continued to lose weight. Not much, but it is still a loss despite the various high calorie/ high fat foods we have been offering him. There's about a week and a half until his next weigh in at g.i. At that point, without a significant gain we may be discussing other measures to get him moving in the right direction.
Overall, despite the long appointment and time our doctor spent with us, the news was about what she had already told us. On the flip side, there wasn't anything new or worse, so we are pretty thankful today.
Once again, I cannot explain the gratitude I have for family and friends who are there when we need you yet also understand when we have just needed breathing room. Your messages and phone calls have often come at times when I've doubted my strength or patience in all this waiting and while I know all our changes and sacrifices are for the right reasons, when I'm frustrated at them you've reminded me this is where I need to be now. Please know, in my heart I know this and I am absolutely sure we are doing the best we can for Cole, and if faced with these choices again, I would make them all. Everything happens for a reason, and your love, kindness, and prayers are appreciated so much more than I can say.
Love to all.
So when our immunologist started off with a positive, I waited for the other shoe to drop after she uttered the word 'but'.
To begin, we were told the good things Cole has going for him, that most of his immune system was wonderful, but there was a key part of it that does not function. This means that there are a particular class of viruses that could be life-threatening to him if he were to have exposure to them either directly or by the rest of the family having contact with them and bringing the shedded germs home.
However, due to the rarity of this nk cell dysfunction, the relative new nature of studying this disorder, as well as the limited amount of research in kids Cole's age, the actual diagnosis may not be solidified for another year. Before they will confirm this disorder with any kids, they usually have a least a year of poor nk cell tests, or at least six tests. At this point, Cole has only had two. Doctors also want to rule out the possibility that these results could stem from his g.i. disorder or class of drugs they are treating him with since there is a study that links the two with decreased nk cell function. Once again, our physician is unclear since there is only an old study dealing with adults and the information regarding kids like Cole and their nk cell studies just are not available so it is tough to truly tell us if their is a link or if he can just be diagnosed. For now, they are just classifying Cole as having an immunologic disorder.
With the information we have, we also need to make some decisions about the level of risk we are willing to take with Cole's immunizations. The majority of them are will be safe for him as they are killed vaccines, but any live vaccines can have life threatening complications for our little guy. For example, if we do go ahead with the chicken pox vaccine and see one little dot, we need to take action immediately without waiting to see what happens because things could go downhill quickly. At the same time, the benefit of the shot could outweigh the risk. Ultimately, we are gambling whether we get the shot or not.
Yet again, our immunologist has consulted another researcher. This doctor is in the process of leaving the east coast for another position in the southwest. If Cole's blood work next week shows he has not started to form and antibodies against the herpes class of viruses like chicken pox, Epstein Barr, etcetera we may need to meet with this doctor as we move forward.
In the meantime we are to do what we've been doing, keep up the limited exposure to everything, monitor what our older kids are exposed to, and wait. At least the weather is incredible so we pace a different perimeter.
While we continue in the holding pattern, we are desperately trying anything to bulk up this boy. In the past week he has continued to lose weight. Not much, but it is still a loss despite the various high calorie/ high fat foods we have been offering him. There's about a week and a half until his next weigh in at g.i. At that point, without a significant gain we may be discussing other measures to get him moving in the right direction.
Overall, despite the long appointment and time our doctor spent with us, the news was about what she had already told us. On the flip side, there wasn't anything new or worse, so we are pretty thankful today.
Once again, I cannot explain the gratitude I have for family and friends who are there when we need you yet also understand when we have just needed breathing room. Your messages and phone calls have often come at times when I've doubted my strength or patience in all this waiting and while I know all our changes and sacrifices are for the right reasons, when I'm frustrated at them you've reminded me this is where I need to be now. Please know, in my heart I know this and I am absolutely sure we are doing the best we can for Cole, and if faced with these choices again, I would make them all. Everything happens for a reason, and your love, kindness, and prayers are appreciated so much more than I can say.
Love to all.
Thursday, February 16, 2012
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.
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