Saturday, March 24, 2012
Win?
If you like to win, check out the raffle on this blog. I am hoping to increase my readers and teamed up with the Great WAHM Event to widen my audience. Lots of products on these sites and lots of great prizes, especially for those of you with new little ones. Check it out! Thanks!
Pictures
What a way to end winter! Like a blanket on a cold day, we have been engulfed in warmth and have shaken the chill of winter from our bones. This week has just been amazing! From a picnic in the park, followed by countless walks, as well as chalk drawings and sprinkler runs it has been the best March I can ever remember!
Despite all the fun of the week we also had a number of appointments for Cole as well. We started Monday with a seven vial draw. Initially the immunologist told us her test results would take a few weeks, however they have already contacted us. Unfortunately, Cole's tests show he is "naive" to all of the viruses they were looking for. In other words, he has never had experience with these viruses, thus has not made any antibodies against them. The hope was that the tests would show some antibodies against one of these viruses as it would indicate Cole's ability to handle these kinds of infections without serious problems. Since they do not, we will continue keeping our man in his virtual bubble, prolonging the avoidance measures we have been employing for a while longer. We'd rather be safe than sorry since it has been explained that any possible contraction of these illnesses could not only be serious, but life-threatening for Cole. The sooner we know about any likely exposure or infection the sooner aggressive treatment with antivirals or IVIG can begin.
A year ago I think my head would have spun with the thoughts of intravenous treatments with one of my kids, but now, I have come to expect the unexpected in terms of what all of Cole's doctors might tell me and accept any test or treatment without blinking an eye. When the girls were his age, I cringed at the idea of their shots, now, I realize shots are a piece of cake! Honestly, right now I am more concerned with Cole's continued weight loss than anything else. Losing weight tangible while all the rest is merely a matter of if. Maybe that's an odd way to look at all this, but we are more or less no longer social exposures are pretty limited and that eases my mind a tad.
After the blood draws, Cole saw his pediatrician for a routine appointment. Other than the additional weight loss, things looked ok. At this point, Cole is now down about two pounds in the past month. At least our doctor reassured us that we were doing all the right things to promote healthy eating, and ultimately, weight gain for Cole. It would be a matter of whether or not he actually wanted to eat that would determine whether he would gain soon. Since everything looks good right now, we just need clearance from g.i. and we will be able to move forward with a minor surgery we have had to put off for Cole. Hopefully we can schedule soon so he is recovered before summer.
Once we were done with the back to back appointments, I wanted to enjoy the day with my two littles. While we have to avoid crowds, as well as enclosed spaces, Cole's stroller on a quiet trail is just fine. Since we have not been out as much as we were with the girls, it's funny to see Cole's entire face blaze with amazement as he discovers bits and pieces about his world. Both Gwyn and Cole were fascinated with a pair of ducks in the park. Gwyn's quacks and Cole's claps and giggles while the ducks waddled, flapped their wings, then splashed into the pond were absolutely priceless! Just like the sounds of laughter floating through the neighborhood while the kids rode their bikes and ran through their artificial rain, these tiny moments have etched themselves alongside my other favorite memories from my time as mom, creating pictures of how I always imagined life with kids would be. This is how I will choose to think of these days, even though indelible images of antiseptic waiting rooms and offices often monopolize my mind.
Despite all the fun of the week we also had a number of appointments for Cole as well. We started Monday with a seven vial draw. Initially the immunologist told us her test results would take a few weeks, however they have already contacted us. Unfortunately, Cole's tests show he is "naive" to all of the viruses they were looking for. In other words, he has never had experience with these viruses, thus has not made any antibodies against them. The hope was that the tests would show some antibodies against one of these viruses as it would indicate Cole's ability to handle these kinds of infections without serious problems. Since they do not, we will continue keeping our man in his virtual bubble, prolonging the avoidance measures we have been employing for a while longer. We'd rather be safe than sorry since it has been explained that any possible contraction of these illnesses could not only be serious, but life-threatening for Cole. The sooner we know about any likely exposure or infection the sooner aggressive treatment with antivirals or IVIG can begin.
A year ago I think my head would have spun with the thoughts of intravenous treatments with one of my kids, but now, I have come to expect the unexpected in terms of what all of Cole's doctors might tell me and accept any test or treatment without blinking an eye. When the girls were his age, I cringed at the idea of their shots, now, I realize shots are a piece of cake! Honestly, right now I am more concerned with Cole's continued weight loss than anything else. Losing weight tangible while all the rest is merely a matter of if. Maybe that's an odd way to look at all this, but we are more or less no longer social exposures are pretty limited and that eases my mind a tad.
After the blood draws, Cole saw his pediatrician for a routine appointment. Other than the additional weight loss, things looked ok. At this point, Cole is now down about two pounds in the past month. At least our doctor reassured us that we were doing all the right things to promote healthy eating, and ultimately, weight gain for Cole. It would be a matter of whether or not he actually wanted to eat that would determine whether he would gain soon. Since everything looks good right now, we just need clearance from g.i. and we will be able to move forward with a minor surgery we have had to put off for Cole. Hopefully we can schedule soon so he is recovered before summer.
Once we were done with the back to back appointments, I wanted to enjoy the day with my two littles. While we have to avoid crowds, as well as enclosed spaces, Cole's stroller on a quiet trail is just fine. Since we have not been out as much as we were with the girls, it's funny to see Cole's entire face blaze with amazement as he discovers bits and pieces about his world. Both Gwyn and Cole were fascinated with a pair of ducks in the park. Gwyn's quacks and Cole's claps and giggles while the ducks waddled, flapped their wings, then splashed into the pond were absolutely priceless! Just like the sounds of laughter floating through the neighborhood while the kids rode their bikes and ran through their artificial rain, these tiny moments have etched themselves alongside my other favorite memories from my time as mom, creating pictures of how I always imagined life with kids would be. This is how I will choose to think of these days, even though indelible images of antiseptic waiting rooms and offices often monopolize my mind.
Raffle
Here is a chance to check out some different blogs and work at home mama's businesses. In the process of checking these out, many are giving you opportunities to win some great things.
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, March 15, 2012
Ides of March
For the last two weeks the line "beware the ides of March" from Julius Caesar has been bouncing around in my head, both when I am awake and when I am sleeping.
Well, today's the day. Is it the parent conference for Gwyn I should be wary of or the already ensuing battle of food with Cole? Since I've already been coated with cereal and bashed by a flying banana I am going to go with the second.
This afternoon we finally meet with Cole's immunologist to go over all of the findings in greater detail as well as learn what the course is from here. All we really know right now is that she has quite a bit to share with us.
The good news about today is that it sounds like they have more of a plan for us now. No matter what it is, we're ready to do anything and everything for him.
Never thought when we had Cole our lives would change so much, then again, you never think that your new baby will be sick. Why not our family? Things like this can happen to anyone.
All I know is like the girls, our little man certainly is something special, here for a reason. I know I have certainly learned quite a lesson in humility.
Well, today's the day. Is it the parent conference for Gwyn I should be wary of or the already ensuing battle of food with Cole? Since I've already been coated with cereal and bashed by a flying banana I am going to go with the second.
This afternoon we finally meet with Cole's immunologist to go over all of the findings in greater detail as well as learn what the course is from here. All we really know right now is that she has quite a bit to share with us.
The good news about today is that it sounds like they have more of a plan for us now. No matter what it is, we're ready to do anything and everything for him.
Never thought when we had Cole our lives would change so much, then again, you never think that your new baby will be sick. Why not our family? Things like this can happen to anyone.
All I know is like the girls, our little man certainly is something special, here for a reason. I know I have certainly learned quite a lesson in humility.
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