Oh CF!!!!!! Today the CF Clinic called to let me know some bad test results from Caleb's annual appointment. Caleb is showing elevated liver enzyme levels and he also cultured staph. I am frustrated with the elevated liver enzyme result. Mostly because I have hardly a clue as to what it means. And when I did question it the nurse said "some kids with CF just show elevated enzyme levels". Just because other kids show it doesn't make it less of an issue for anyone. When I researched it a little I came up with a possible cause of too much medication, specifically, vitamin A. Which would make sense because he takes a major multi-vitamin that is concentrated on the fat-soluble vitamins (A,D,E, and K). But what I also gathered is that it can lead to cirrhosis of the liver. I would be lying if I said I wasn't worried about this. Just another part of the face of CF showing up in Caleb's life...again.
The staph culture also makes me bummed of course. Mostly because Caleb is starting kindergarten in about a week. I really want him to start off on a healthy foot. And now we are also going to be doing multiple breathing treatments per day to try to stay on top of this staph. Caleb has never allowed his mommy to be sleep-deprived. He NEVER has. He has ALWAYS been a fantastic sleeper and still is. Which is causing a little problem with getting ready for school to start. He goes to bed at about 8:30 and he sleeps until 9'ish. And if we are late getting him to bed for any reason than he sleeps a lot longer in the morning. So trying to get him up and eat breakfast before kindergarten starts at 8:15am is going to be interesting...let alone fitting in a 20minute breathing treatment before he leaves as well.
I am trying to convince myself that he is going to be fine and that his life will be so unlike all the other CF patients. But like another Mom of CF said this past week..."there is no such thing as a mild case of CF. One day your fine and the next day things are completely different".
I am just really leaning on God right now to keep my head up and thoughts positive.
Wednesday, August 11, 2010
Monday, July 19, 2010
So long and so much to say...
Well I have no idea who even reads this blog anymore...especially since it has been half of a year since I last even blogged. But here it goes anyway. I am thinking that this whole blogging thing is going to start to be a self-therapy for me. So what I write may seem silly, ridiculous, unsensable (is that even a word). But it is for me and it allows me to put down my thoughts.
Things are going well in our household. I am very honored to be the one who watches my nephew 2-3 days per week while my sister and brother-in-law work. My family and I have been able to have a great bond with him.
Haley is spunky. I call her sweet and sour. I love her little personality. She is such a spitfire but sooooo incredibly loving to anyone who crosses paths with her. And she is such a GIRL! She is always dressed up in some type of princess dress or tutu skirt with butterfly wings. She asks to have her toenails and fingernails painted. She asks me everyday to "fix her crazy hairs" when she wakes up in the morning. And she surely has some crazy hair when she wakes up :) And last but not least, she is completely fearless of everything. Which is super scary for her Mommy and Daddy.
Caleb is doing well. We are really working on getting some more weight on him. His CF doctor wants him above the 50th percentile and we had him there in February, then in May he dropped to the 30th percentile. Ever since then it has been incredibly hard to get ounces on him let alone pounds of weight. He has done so well with his health. He had a great past winter season. He did fantastic during the H1N1 season. I was so relieved for him. We had and still do have tamiflu in our cupboard unmixed if ever he were to get sick with H1N1. Even though Caleb is doing wonderful with his health, CF has been showing its face more and more. There used to be a day when Caleb would just eat and eat. Now he struggles to even have that feeling of hunger. The mucous must be present in his tummy and or intestines and so his mind thinks he is full. Caleb used to run and run and never cough. Now there are more times than not that he will have a little cough fit when he has been pretty active. Again another sign of the face of CF and it makes me so mad. Caleb also has shown a lot of cravings for salt this summer. He takes in so much salt everyday. He will even pour it in his hand and then just lick it off of his hand. He always has a gatorade present and it has been just completed diluted with salt in it. Again, another sign of CF. But Caleb NEVER complains. He just does what he needs to do and continues on at 100mph. He has got to be the most loving little boy in the world. His favorite thing in the world (next to the Wii and his little 4-wheeler) is cuddling. He loves to cuddle with anyone and everyone. He loves to hike and when he does hike he never complains and out of all people he would have the most reason to stop and rest and pass on the hike. It takes so much for him to hike and breath when gaining elevation-but he doesn't complain. He will in fact lead the pack thru the hike. AMAZING is what I say everytime I witness him accomplish what is to be against the odds.
When Caleb was first diagnosed with CF my world completely stopped. It took a long time for both Shane and I to come to grips with what Caleb had just been dealt. For the next 3 years we had great attitudes and just kept our heads up without being down and out about the diagnosis. I still think we have great attitudes and we try to keep our heads up. But for me I have found myself shedding a tear here and there more often. Caleb is going to be 5 in the next couple of weeks. And to think that kids w/CF that were born when my parents were born would not have seen their 5th birthday. Caleb is going to also be celebrating FOUR years inpatient free. And I should be on cloud 9 about that. Instead I find myself thinking that in one more year he will be in 1st grade. I am terrified for 1st grade. I have always been the one mostly in control of Caleb's meds during the day. Sure Shane takes care of them as well. But Shane works full-time and so I have always been the one to know and give Caleb his meds. When Caleb hits first grade I am going to have to pass off a lot of that control to a school nurse whom I have never met. She will be giving him his meds 5 days/week. What if she doesn't do it right? What if she forgets? What if her not doing it right or forgetting lands Caleb in the hospital? What if Caleb isn't getting enough calories during the day at school and I don't know? And my scariest fear...what if some rude kids make fun of him for always having to go to the nurses station, or because he has to have so many bathroom breaks. What if they make fun of him because he coughs a lot? I am so not prepared for any of this and I don't know if a year will be long enough for me to figure it out.
Things are going well in our household. I am very honored to be the one who watches my nephew 2-3 days per week while my sister and brother-in-law work. My family and I have been able to have a great bond with him.
Haley is spunky. I call her sweet and sour. I love her little personality. She is such a spitfire but sooooo incredibly loving to anyone who crosses paths with her. And she is such a GIRL! She is always dressed up in some type of princess dress or tutu skirt with butterfly wings. She asks to have her toenails and fingernails painted. She asks me everyday to "fix her crazy hairs" when she wakes up in the morning. And she surely has some crazy hair when she wakes up :) And last but not least, she is completely fearless of everything. Which is super scary for her Mommy and Daddy.
Caleb is doing well. We are really working on getting some more weight on him. His CF doctor wants him above the 50th percentile and we had him there in February, then in May he dropped to the 30th percentile. Ever since then it has been incredibly hard to get ounces on him let alone pounds of weight. He has done so well with his health. He had a great past winter season. He did fantastic during the H1N1 season. I was so relieved for him. We had and still do have tamiflu in our cupboard unmixed if ever he were to get sick with H1N1. Even though Caleb is doing wonderful with his health, CF has been showing its face more and more. There used to be a day when Caleb would just eat and eat. Now he struggles to even have that feeling of hunger. The mucous must be present in his tummy and or intestines and so his mind thinks he is full. Caleb used to run and run and never cough. Now there are more times than not that he will have a little cough fit when he has been pretty active. Again another sign of the face of CF and it makes me so mad. Caleb also has shown a lot of cravings for salt this summer. He takes in so much salt everyday. He will even pour it in his hand and then just lick it off of his hand. He always has a gatorade present and it has been just completed diluted with salt in it. Again, another sign of CF. But Caleb NEVER complains. He just does what he needs to do and continues on at 100mph. He has got to be the most loving little boy in the world. His favorite thing in the world (next to the Wii and his little 4-wheeler) is cuddling. He loves to cuddle with anyone and everyone. He loves to hike and when he does hike he never complains and out of all people he would have the most reason to stop and rest and pass on the hike. It takes so much for him to hike and breath when gaining elevation-but he doesn't complain. He will in fact lead the pack thru the hike. AMAZING is what I say everytime I witness him accomplish what is to be against the odds.
When Caleb was first diagnosed with CF my world completely stopped. It took a long time for both Shane and I to come to grips with what Caleb had just been dealt. For the next 3 years we had great attitudes and just kept our heads up without being down and out about the diagnosis. I still think we have great attitudes and we try to keep our heads up. But for me I have found myself shedding a tear here and there more often. Caleb is going to be 5 in the next couple of weeks. And to think that kids w/CF that were born when my parents were born would not have seen their 5th birthday. Caleb is going to also be celebrating FOUR years inpatient free. And I should be on cloud 9 about that. Instead I find myself thinking that in one more year he will be in 1st grade. I am terrified for 1st grade. I have always been the one mostly in control of Caleb's meds during the day. Sure Shane takes care of them as well. But Shane works full-time and so I have always been the one to know and give Caleb his meds. When Caleb hits first grade I am going to have to pass off a lot of that control to a school nurse whom I have never met. She will be giving him his meds 5 days/week. What if she doesn't do it right? What if she forgets? What if her not doing it right or forgetting lands Caleb in the hospital? What if Caleb isn't getting enough calories during the day at school and I don't know? And my scariest fear...what if some rude kids make fun of him for always having to go to the nurses station, or because he has to have so many bathroom breaks. What if they make fun of him because he coughs a lot? I am so not prepared for any of this and I don't know if a year will be long enough for me to figure it out.
Saturday, December 12, 2009
Welcome Baby Colton!!!
I am sooooo excited to announce that I am Aunt for the 2nd time! Colton Daniel was born this morning at about 145am. He is 5lbs 2 oz and is beautiful. I am so happy that both him and his Mommy are doing so well. Caleb is so excited to have a boy cousin. But Caleb's first question was...When is Colton going to run as fast as me? Gotta love it!
Monday, October 5, 2009
Aspen
We made our 3rd annual trip to Aspen, Colorado a few weeks ago. Shane and I spoke at the Celebrity Flyfishing Tournament again. It is such huge blessing to be able tell strangers our story and in turn they donate several thousands of dollars to try to find a cure for CF. This year we raised about $40,000.00 for CF research. And again, we were and still are so humbled by people's hearts and generosity.
While in Aspen we did some hiking, and Shane did some fishing. Of course the fishing was great for Shane...it always is for him up in Aspen. The kids had so much fun and were well behaved. It was nice to have a little break from life and spend some time together.
While in Aspen we did some hiking, and Shane did some fishing. Of course the fishing was great for Shane...it always is for him up in Aspen. The kids had so much fun and were well behaved. It was nice to have a little break from life and spend some time together.
Thursday, September 3, 2009
Back to School!
Caleb is attending Happy Valley Preschool this year. This is his 2nd year of preschool. Last year he attended two days/week and he is now attending 3 days/week. Next year he will be in kindergarten :( At Happy Valley they have a little farm with ponies, horses, pigs, chickens, bunnies, and sheep. The classrooms are set up very nicely as well, with a writing center, library, music area, and a science area/small group area. I think we will end up paying for tuition for Haley as well starting in a couple of years.
Above: Haley's first haircut. Hair in a pony tail with glitter :) Thanks Cool Cuts for Kids!
Above: Haley riding a tricycle at Happy Valley during the Open House.
Above: Caleb ready for his first day of school. He is so big...
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