I started this blog mainly to appear more professional as a writer, you know have an online presence to impress perspective agents and editors. But as life took over, it became a nice little place to update my family and friends about my son's illness and to vent, of course. I have, however, established my own web page devoted solely to my writing, but occasionally I would like to share something worthwhile and writerly.
I joined the Online Writers Workshop of Sci Fi and fantasy several years ago, expecting to wow all the other workshoppers with my unparalleled stories. What I immediately found out was that my writing was not anywhere up to snuff. Extremely simple things that I thought I had learned in high school, I hadn't. It was actually quite embarrassing, but also extremely enlightening. There was something about learning from my own mistakes from other people's eyes that seemed to get into my thick head a lot more powerfully than just looking at other's people's errors. When my own little babies were ripped apart word by word it was heartbreaking, sometimes discouraging, but damn did it make me a better writer.
I especially owe a great grammatical thank you to one Larry West who I traded critiques with. Frankly, I don't think I helped him greatly, but he was a lifeline to me. A literal grammar guru professor type, he patiently and painstakingly went through each of my postings line by line and kindly pointed out all my many mistakes, then explained why they were mistakes and the proper way to write it out. I can only imagine he must be the type of person who likes to fix things, search for things to fix, you know, the type of person who loves crosswords and puzzles, because, well, I had a lot.
However, after months of trading critiques with him, he sent one of mine back with the words close to: "This is near perfect, Clover. I'm hard-pressed to find anything to correct." Had you been a fly on my wall, you would have seen my chair fly back from my computer desk as I proceeded to do a very happy victory dance.
Anyway, in honor of Larry who was willing to tolerate someone who had very little skill in grammar, my little nuggets of writing wisdom to pass on will be bare-boned simplistic. I'm talking about things that should have been taught in, if not elementary school, then at least intermediate or junior high, possibly things that were taught, but tuned out, because passing colorful doodle-enhanced notes between friends was far more entertaining than droning teachers. No past perfect presence tense lectures here yet or things that professional writers don't even sneeze at. I'm going basic, simple . . . to things that make all new writers that are first getting serious about their craft slap their foreheads, exclaiming, "Duh, I should have known that." These are the things that make us feel dumb and stupid and way out of our league because we should already know this, but missed it somewhere. So I will be the brave writer here and say, "Yeah, I didn't know these things either." I once thought that it was better to be a great storyteller and have talent than grammatical skill. I couldn't have been more wrong. A lot of hard work and relearning and being humble enough to let my work be slashed to pieces, shaped me into a far better writer than I ever could have been.
Okay, since I rambled, the first lesson will be short.
Aspiring Writers Lesson One:
It's verse Its. It's is the conjunction for It is. Its represents that the It in question has ownership of something. You wouldn't write her's, or his's for their possessives. Just remember: His, hers, its.
End of lesson.
A Shunt
After the CT scan, the GI doctors decided they needed to take over C's management again, instead of the pulmonary docs, so, we won't be transfering over to Cook's after all. Which is fine. They are wondering if what the scan showed is infection or infartions. C is on some heavier antibotics to cover a broad range, but if it doesn't lessen the fever and stomach pain, we might need to consider a shunt, bascially taking out the spleen and using part of a vessel from somewhere else and turning it into a shunt from the liver to make the blood flow where it is supposed to.
I started crying when they told me this. I'm not sure why. Too much stress I suppose, because realistically we came in here for a liver transplant, but this would be much less traumatic, plus he won't have to have anti-rejections. And getting rid of that huge spleen would take a lot of pressure off his lungs and hopefully his liver too. But we aren't at that point yet anyway. First we need to wait a few days and see what happens with his pain. The fever has already gone down. There is a spleen surgeon the GI team is consulting with who is consulting with the spleen/shunt team down in Houston . . . so basically we're waiting right now. I really thought that that coming in the hospital in November would mean we wouldn't have to spend another Christmas in the hospital. Ah, well.
The pain management team is giving Chase a PCI pump today so he'll just have to press a button to get his morphine instantly rather than wait to tell a nurse. Anyway, so that is where we are.
Oh, I just had a pulmonogist come in and tell me they were discussing about whether to just take part of the spleen away, that way there will be some immunity benefits still. A lot of discussion about this, a lot of different options. Which one is best? How's a parent to know?
As my dear friend Faith, and Harry Potter fan said, she wishes she could wave a wand and say "liver repairitus" or "spleen repairitus". Maybe that's why I love to write fantasy, create worlds with lots of magic. I could use a little right now.
I started crying when they told me this. I'm not sure why. Too much stress I suppose, because realistically we came in here for a liver transplant, but this would be much less traumatic, plus he won't have to have anti-rejections. And getting rid of that huge spleen would take a lot of pressure off his lungs and hopefully his liver too. But we aren't at that point yet anyway. First we need to wait a few days and see what happens with his pain. The fever has already gone down. There is a spleen surgeon the GI team is consulting with who is consulting with the spleen/shunt team down in Houston . . . so basically we're waiting right now. I really thought that that coming in the hospital in November would mean we wouldn't have to spend another Christmas in the hospital. Ah, well.
The pain management team is giving Chase a PCI pump today so he'll just have to press a button to get his morphine instantly rather than wait to tell a nurse. Anyway, so that is where we are.
Oh, I just had a pulmonogist come in and tell me they were discussing about whether to just take part of the spleen away, that way there will be some immunity benefits still. A lot of discussion about this, a lot of different options. Which one is best? How's a parent to know?
As my dear friend Faith, and Harry Potter fan said, she wishes she could wave a wand and say "liver repairitus" or "spleen repairitus". Maybe that's why I love to write fantasy, create worlds with lots of magic. I could use a little right now.
4 days my butt
What was supposed to be a 4 day liver evaluation has turned into a 2 week stay here at Children's Medical Center of Dallas. They have run every test known to mankind on my little guy from a liver biopsy, CT scan, ultrasound, sonograms, too many x-rays, dental tests, ears, eyes, and nose cultures, EGD scopes, psych evaluation, social worker evaluations, yadda yadda yadda . . . and more yaddas. The good news, I suppose it's good news, is that C's liver is not in such bad condition to warrant a transplant at this time. However, his spleen is huge beyond limits and should that be taken out or is it doing good to act as another place, a sponge of sorts, to catch all the blood the liver is sending every which way but where it should be? Anyway they decided to just keep an eye on it for now. Which is fine by me cuz the more I learn about transplants, esp. how the anti-rejection steroids rid you of any immunity afterwards, the less and less I think this is a good idea. With CF, C is prone to infection, so . . . Of course I have my own fears amplified over that since that is exactly how my oldest child died at 3 months. Strong steroids to rid him of his seizures also rid him of his immunities and Cam caught a cold.
Case in point, with all these tests and being in the hospital, Chase caught pnemonia. He certainly didn't come here with it. So now we are going on 2 weeks here, with more and more tests, duplicate tests, duplicates, triplecates, guadtruple-cates. His stomach has a huge pain in it and he can't shake off a fever. Morphine is once again, C's drug of choice and until they can figure out where the fever and pain are coming from, we are stuck here - and the days are dragging on and on and on. Every test for infection comes back negative, so they had to give Chase another IV so he could have a CT scan with birilium in his veins. You can imagine how well that went over after he only agreed to get a PIIC line with the assurance that he would not have to have any more IVs. The trust level for any health care people to an 11 year old mind just smashed out the window.
The thing I'm discovering about Children's in Dallas compared to Cook's in Fort Worth is that there are simply too many doctors and residences. The whole too many cooks spoiling the soup is in full swing because these doctors all have their own concerns and they simply have no communication. From a parent's perspective, it is a little frightening. More than once, one doctor will prescribe a treatment only to have another come in and say that that is too dangerous for the liver. I've never experienced that with Cooks. My pulmonologist pretty much takes charge and confers with the GI and Endrogine guys and they actually confer. Granted, Cooks is much smaller and it isn't a teaching hospital with a myriad little residences running around, but I'm getting a little fed up regardless. I realize C must be an interesting learning experience for these new doctors with all the things going on with him that span several different departments, but come on people, just talk with one another. I know you're busy and important, but is that so hard?
Anyway, the pulmonologist came to me and suggested that we transfer back to Cook's since they are just starting their clinic here and it will be confusing for a while. I just stood there slack-mouthed, while my mind was working out the details that Yes! let's go back to a familiar place that has people that will actually work with each department and get us home. Good. Fine. Let's go. Of course, wouldn't you know that there are no beds available at Cooks. I'm thinking that there may never be any beds available this time of year. From their perspective, if you have a kid in emergency, waiting for a room, verses another who you know is already being taken care of at another hospital, who would you give the room to?
We're never going to get out of here.
Case in point, with all these tests and being in the hospital, Chase caught pnemonia. He certainly didn't come here with it. So now we are going on 2 weeks here, with more and more tests, duplicate tests, duplicates, triplecates, guadtruple-cates. His stomach has a huge pain in it and he can't shake off a fever. Morphine is once again, C's drug of choice and until they can figure out where the fever and pain are coming from, we are stuck here - and the days are dragging on and on and on. Every test for infection comes back negative, so they had to give Chase another IV so he could have a CT scan with birilium in his veins. You can imagine how well that went over after he only agreed to get a PIIC line with the assurance that he would not have to have any more IVs. The trust level for any health care people to an 11 year old mind just smashed out the window.
The thing I'm discovering about Children's in Dallas compared to Cook's in Fort Worth is that there are simply too many doctors and residences. The whole too many cooks spoiling the soup is in full swing because these doctors all have their own concerns and they simply have no communication. From a parent's perspective, it is a little frightening. More than once, one doctor will prescribe a treatment only to have another come in and say that that is too dangerous for the liver. I've never experienced that with Cooks. My pulmonologist pretty much takes charge and confers with the GI and Endrogine guys and they actually confer. Granted, Cooks is much smaller and it isn't a teaching hospital with a myriad little residences running around, but I'm getting a little fed up regardless. I realize C must be an interesting learning experience for these new doctors with all the things going on with him that span several different departments, but come on people, just talk with one another. I know you're busy and important, but is that so hard?
Anyway, the pulmonologist came to me and suggested that we transfer back to Cook's since they are just starting their clinic here and it will be confusing for a while. I just stood there slack-mouthed, while my mind was working out the details that Yes! let's go back to a familiar place that has people that will actually work with each department and get us home. Good. Fine. Let's go. Of course, wouldn't you know that there are no beds available at Cooks. I'm thinking that there may never be any beds available this time of year. From their perspective, if you have a kid in emergency, waiting for a room, verses another who you know is already being taken care of at another hospital, who would you give the room to?
We're never going to get out of here.
Unbelieveable Month
November has been one of those crazy kind of months that I'm not sure if I'm happy to see go or not. Like a roller coaster, there has been a lot of soaring highs followed by crashing lows.
Beginning the month, I went to the writers conference which was fabulous, then I had two days to work, get laundry going, pack, and off our family went to Disney World, which I'll blog about and put up pictures once everything slows down. Then a day or so after Disney, Chase got sick, put in the hospital to clear out his lungs for around 10 days. While he was there at Cooks Childrens in Fort Worth, the hospital in Dallas called and said they had set up his liver evaluation. We had been waiting for that, so we got Chase released early from Fort Worth early to be readmitted on the same day at Children's Medical Center in Dallas. He was supposed to come home last Thursday, but they keep finding other deeper infections and pancreatic stuff and more and more so now November is gone and Chase is still in the hospital. And I am so ready to just be able to be done with this for just a little a while.
Meanwhile, I've had some real interest in my book and have had my fingers crossed most of November as well. Again, I'll blog all about that as well once I've a chance to catch my breath. I'm off to work for a few hours, then up to the hospital to replace my sweetheart who has been there the last couple of days since I couldn't any more days off work.
Beginning the month, I went to the writers conference which was fabulous, then I had two days to work, get laundry going, pack, and off our family went to Disney World, which I'll blog about and put up pictures once everything slows down. Then a day or so after Disney, Chase got sick, put in the hospital to clear out his lungs for around 10 days. While he was there at Cooks Childrens in Fort Worth, the hospital in Dallas called and said they had set up his liver evaluation. We had been waiting for that, so we got Chase released early from Fort Worth early to be readmitted on the same day at Children's Medical Center in Dallas. He was supposed to come home last Thursday, but they keep finding other deeper infections and pancreatic stuff and more and more so now November is gone and Chase is still in the hospital. And I am so ready to just be able to be done with this for just a little a while.
Meanwhile, I've had some real interest in my book and have had my fingers crossed most of November as well. Again, I'll blog all about that as well once I've a chance to catch my breath. I'm off to work for a few hours, then up to the hospital to replace my sweetheart who has been there the last couple of days since I couldn't any more days off work.
Last Day at World Con
The Texas Capital at twilight. The hotel lost it's vibrancy after most of the conference goers left. It was kinda sad, so Heather and I went downtown to the Bob Bullock museum and watched Superman Returns in 3-D in their omni theather. 
Looking down at the floor of the museum.
Earlier, while the conference was still buzzing. Heather, me, & Faith at the Cheesecake Factory.
Texas star outside of the museum.
Looking down at the floor of the museum.
Earlier, while the conference was still buzzing. Heather, me, & Faith at the Cheesecake Factory.
Texas star outside of the museum.
The Howards
Had to get a picture of the Howard Awards.
Me & Sharon Shinn. She too, was very nice. I got a kick out of her at the awards ceremony. I happened to be sitting a few tables behind her. As they were doing a tribute for the artist John Palencar, every time one of her book covers that he had done came up on the screen, she raised her arms in glee. It was very cute to watch her excitement.
Me & Sharon Shinn. She too, was very nice. I got a kick out of her at the awards ceremony. I happened to be sitting a few tables behind her. As they were doing a tribute for the artist John Palencar, every time one of her book covers that he had done came up on the screen, she raised her arms in glee. It was very cute to watch her excitement. 
These are two new ya fantasy writers. Tiffany Trent & Sarah Durst. We met them at the cheesecake factory. They are both really cute and both have their first novels coming out in 2007. From their readings, they sound like really good books. I'm so excited for them and hope to be in their place one day with my first novel coming out. Of course I'm not young and cute, but whatever. I'm in my prime and brilliant!
Heather on the 2nd floor
Heather on the 2nd floor
Carol N Douglas
we kept running into Carol N Douglas every time we made a turn. It was funny ... and strangely wierd. Here she is showing us her $1000 shoes, which she received gratis after she mentioned the name in one of her books. Nice perk, eh? Yes, yes, I should know the designer, but since I am so not in fashion (walmart shopper here) I've forgotten. If you really want to know, pop over into Faith's blog, she knows all about what's hot in the fashion world. I really need her to take me shopping to update my look. 
me and Ms. Douglas. Isn't she adorable in her vintage wear? And she was such a fun, generous, pleasant person. She really has a way of making people feel comfortable. I really liked her.
me and Ms. Douglas. Isn't she adorable in her vintage wear? And she was such a fun, generous, pleasant person. She really has a way of making people feel comfortable. I really liked her. 
Paranormal Romance at World Con
Robin Owens, Gail Dayton, Jeri Smith-Ready, and Shanna Swendson
Charlaine Harris
Me and Gail Dayton
Heather getting Gail Dayton's autograph
I sat beside Gail Dayton in the fantasy crossover panel. Gail Dayton! She was so down-to-earth. She came in, I think, prepared for the paranormal romance crossover to be put down, but happily that didn’t occur at all. Just the opposite. Yay for paranormal romance in the mainstream fantasy arena! She made comments to me throughout like a regular person, but honestly I was star struck the entire time, trying not to act like it.
Charlaine Harris
Me and Gail Dayton
Heather getting Gail Dayton's autograph
I sat beside Gail Dayton in the fantasy crossover panel. Gail Dayton! She was so down-to-earth. She came in, I think, prepared for the paranormal romance crossover to be put down, but happily that didn’t occur at all. Just the opposite. Yay for paranormal romance in the mainstream fantasy arena! She made comments to me throughout like a regular person, but honestly I was star struck the entire time, trying not to act like it.Love that Elevator
Faith & Heather
Sam, from Scifi reviews
L. E. Modesitt
Sam, from Scifi reviews
L. E. Modesitt
Ah, yes. We found that every time we got on the elevator, we ran into someone we could be star struck over. The funniest was when we decided we just needed to take a picture of said famous elevator so we all had our cameras out and in walked L.E. Modesitt. Poor guy. Flash. Flash. Flash. On the next stop he hustled out of the elevator, asking, "is this two?" I jokingly said, as he was fleeing, "if it wasn't your stop, it is now." To that he actually stopped, turned, and said, "no, no, it really is my floor." Wasn't that so cute? I just love these writers.
Charles DeLint
Friday
I swear I am just going to hang out at the elevator. Ride it up and down, up and down, because I keep meeting the kewlest people. I am not so ditzy today, but still extremely friendly and outgoing. As Heather and I are walking down the hall from our room, two sets of couples strolled out of their room ahead of us. Being friendly, we just start talking to them, get on the elevator, and big ears me hears them talking about a con suite, so I pipe up, “what’s that?” Very kindly, this tall, sweet, hippie/rocker looking man tells us it is a suite that anyone from the convention can go to and hang out in. Follow us, we’ll show you. So we get off on the third floor with them and are chatting all along the way, names are exchanged but I just hear Charlie and not the last name, and it doesn’t matter cuz we’re all just having a great time conversing, until we get in the room. There is a very nice spread of food, but I don’t notice that because I glance down and read Charlie’s nametag: CHARLES DeLINT. Charles DeLint! Mister big time sci fi reviewer, so knowledgeable. I knew he would be here, but I also knew that even if I glimpsed him from afar, no way would I ever have approached him, cuz he would be so far above me. That’s what I had envisioned, but here we were, by a simple stroke of fate, chatting with Mr. DeLint and he couldn’t have been more personable and kind and enjoyable to talk with, and his wife is a delight, very pretty and eager to show around and welcome two newbies into the con suite and introduce us to other big huge famous people. And even though it became obvious that I didn’t know some of the big writer’s works that were there (I found out later and OMG I was in a room with greatness) yet there was no judgmental vibe coming off of him. He couldn’t have been more accepting. And what I found most charming was how he spoke of his band and how they were going to be playing that night, but he didn’t know where. His eyes lit up, just like my DH’s do when he starts talking about a gig. Unfortunately I couldn’t find where they were playing later that night. I even braved the other con suite, which was so packed and with no music coming out of the door, that I just backed out gracefully, totally out of my element in a room full of people that knew each other, and I knew none.
I swear I am just going to hang out at the elevator. Ride it up and down, up and down, because I keep meeting the kewlest people. I am not so ditzy today, but still extremely friendly and outgoing. As Heather and I are walking down the hall from our room, two sets of couples strolled out of their room ahead of us. Being friendly, we just start talking to them, get on the elevator, and big ears me hears them talking about a con suite, so I pipe up, “what’s that?” Very kindly, this tall, sweet, hippie/rocker looking man tells us it is a suite that anyone from the convention can go to and hang out in. Follow us, we’ll show you. So we get off on the third floor with them and are chatting all along the way, names are exchanged but I just hear Charlie and not the last name, and it doesn’t matter cuz we’re all just having a great time conversing, until we get in the room. There is a very nice spread of food, but I don’t notice that because I glance down and read Charlie’s nametag: CHARLES DeLINT. Charles DeLint! Mister big time sci fi reviewer, so knowledgeable. I knew he would be here, but I also knew that even if I glimpsed him from afar, no way would I ever have approached him, cuz he would be so far above me. That’s what I had envisioned, but here we were, by a simple stroke of fate, chatting with Mr. DeLint and he couldn’t have been more personable and kind and enjoyable to talk with, and his wife is a delight, very pretty and eager to show around and welcome two newbies into the con suite and introduce us to other big huge famous people. And even though it became obvious that I didn’t know some of the big writer’s works that were there (I found out later and OMG I was in a room with greatness) yet there was no judgmental vibe coming off of him. He couldn’t have been more accepting. And what I found most charming was how he spoke of his band and how they were going to be playing that night, but he didn’t know where. His eyes lit up, just like my DH’s do when he starts talking about a gig. Unfortunately I couldn’t find where they were playing later that night. I even braved the other con suite, which was so packed and with no music coming out of the door, that I just backed out gracefully, totally out of my element in a room full of people that knew each other, and I knew none.
World Fantasy Convention
Me, Marjorie Liu, & my sister HeatherI’m here at the World Con and making a total ditz out of myself. I came out of the gate strong, making a goggled-eyed impression right at the hotel reservations. There was a beautiful woman waiting behind my sister and I me with a very nice blouse on, so I complimented her on it. She smiled and said thank you then, and went to check in at the counter beside me. I overheard her say Marjorie Liu, at which point I leaned back around my sis and exclaimed. “Did you just say you are Marjorie Liu? I have your book!” Yes, I know, exactly the kind of professional air I wanted to walk in with, but come on – It was Marjorie Liu!
Her face lit up. She was so sweet and kind. Unfortunately I made a fool of myself even further when I asked for her autograph later and couldn’t stop stammering and giggling like a complete idiot.
Then I did it again when we stepped on the elevator and there was a nice lady already on and I did a quick glance at her tag, and couldn’t help blurting out, “You’re Elizabeth Moon! I’m on the elevator with Elizabeth Moon!” As though she didn’t know who she was or that she was indeed on an elevator. She gave me that kindly indulgent smile, very poised, and was quick to exit when the elevator reached her floor, probably relieved when I didn’t get off and follow after her. I have so much more to tell you about the Con, but that will have to wait for a few days. More pictures too. A lot more.
Kidd's Kids
Back in early August, Chase was listening to 106.1 when he heard a random announcment about Kidd's Kids wanting more families to sign up for their Disney World trip this year. I had never even heard of this before. Anyway Kidd Kraddick in the morning founded this really cool organization where they send disabled or chronicly ill children with their families to Disney from donatitons they receive. All excited Chase asked if we could apply. He heard them say that diabetics could go. I'm thinking, diabetic? Like that's the worse of his problems. I've never signed up for anything like this, never even thought of it. Why would I? Things like that don't happen for people like us, do they? An all expense paid trip to Disney World for the entire family? Get real. That happens for those kinds of people in like, well, Hallmark Lifetime movies or something. But it never hurts to try and it sounded like we qualified. Certainly we've had the most devastating finincial three years ever. We haven't been able to take the kids on any sort of vacation for I don't even know how long. If we couldn't drive there, we didn't go. And Chase definitely has a chronic illness. Unbelieveably, we got a letter that said we get to go. It's still a little hard to believe. And I'm afraid to get too excited - for when you live with an ill child, you never know what is going to happen day by day. And sure enough, during all this excitment, Chase ruptured his spleen and now we are doing all the preparatory work to get him evaluated for a new liver. I've asked all the doctors and so far the consenus is that we should go and have a great time. We could all use a little stress free time. Stress free? More than that. It's gonna be awesome! All right, I'm gonna quit suppressing my excitement. It's gonna be great! 
Thank you Kidd Kraddick, Derrick, and all the crew. You're the best!
State Fair of Texas
My only older sister, Bekie, came out for a weekend visit. It was great. She is wonderful fun to hang out with.
We were able to take the kids out to the State Fair of Texas. It was a beautiful cool and cloudy day -- just perfect for roaming. And roaming my little ones did -- all over the place and in many different directions. Keeping them all safely un-lost took most of the time so we barely were able to traverse a third of the fair grounds, but that's the fun with kids. It was just nice to be out doing something in the cool Texas air.
See Tate straggling in the rear. That's the closest we kept together the entire time.
Big Tex!
Kids loved watching his mouth move.
We were able to take the kids out to the State Fair of Texas. It was a beautiful cool and cloudy day -- just perfect for roaming. And roaming my little ones did -- all over the place and in many different directions. Keeping them all safely un-lost took most of the time so we barely were able to traverse a third of the fair grounds, but that's the fun with kids. It was just nice to be out doing something in the cool Texas air.
See Tate straggling in the rear. That's the closest we kept together the entire time.
Big Tex!
Kids loved watching his mouth move.
No time to blog
I've been to so many appointments lately I haven't had much time for blogging. I asked my boss yesterday to lower my hours. I'll be going from 4 days a week to only two. My paycheck will be almost nothing, but I just can't do it anymore. Tuesday when my five year old broke his arm was the last straw.
Neither dear heart or myself was home. Dear heart got there first and took T to the emergency. For some reason I'm still trying to figure out, they sent him home with it wrapped and said to come back in the morning. In the am, I took him back to the ortho clinic and they were also surprised that the arm hadn't been set right away.
Anyway, T has seen Chase get too many IVs so he was prepared on how he was supposed to act. . . kicking and screaming and fighting all the way, which he did with gutso and after two attempts, the nurses gave up. I kept asking them over and over, if they were going to put him out anyway, why not give him the happy juice and put the IV in while he was asleep. Please, this was not my first trip to the OR and I know my kids. Stubborn and tough as hell and with too many experiences in hospitals. It also didn't help to have 7 adults standing around in a very small room as my little guy goes balastic. One nurse even had the nerve to tell me that T needed counseling. Hello! What does she know about it? What he needs is a mother that isn't always gone, either working or at medical appointments or financial appointments and a family who is not in severe stress. Plus not having 7 strange adults watching him and holding him down to pierce needles in his arm. That's what he needs. Even if I thought he needed counseling (he's 5 people) that would just be more appointments that would further the problem.
I didn't tell her this all at the time because by then I was in tears, not over the procedure, which I'm sure they assumed. Scared mom, yadda yadda, but it was when they told me that they would do it with the juice, but couldn't schedule it until that evening or possibly the next morning, that I got emotional, I couldn't help it. I simply could not manipulate my exhausted mind around the fact that I still had to go to work in a few hours, and finish the profile for SSI medicaid, and get Chase's pulmonolgy visit completed. My mind went in a meltdown right there in front of everybody. No wonder they thought we all needed therapy.
Fortuneately the surgeon took charge, came in and told me that he rescheduled things and was going to do it right away and asked me if I could get T to drink the juice so they wouldn't have to hold him down and attempt an IV again. Then he kindly kicked all those numbskull nurses out of the room so I could calm T down. Guess what, T drank the stuff even though he didn't like it and very shortly got happy and silly and all was well. Why couldn't they have just done that in the first place?
I'll tell you, I've been going to Cook Children's Medical Center for 17 years almost every 3 months if not more. My oldest child died in my arms in that hospital and I think about that everytime I'm there, brace myself every time Chase is admitted and pray that I don't get put in that same room . . . so far we never have, but I've passed it, looked in, remembered . . . but regardless, I would tell anyone that Cooks is the greatest hospital ever and they have always managed things exceedingly well . . . except this one time. I don't know what happened, but from the start in emergency, it was mishandled badly, one thing after another, until the surgeon came on the scene then all fell into place how it should. I even got T home in time for me to go to work.
But then I worked two midnight shifts in a row and was dragging, and seeing that my children were suffering, T physcially, and my oldest boy, who I had hoped would step up to the plate, reacted the other way and has gotten beligerent and acting like he doesn't care. Or he is simply turning into a teenager. O crap, maybe we all do need counseling.
I do have some tremendously good news, but Chase's nebs just finished so I'm off to bed for now, so that will have to wait for later.
Neither dear heart or myself was home. Dear heart got there first and took T to the emergency. For some reason I'm still trying to figure out, they sent him home with it wrapped and said to come back in the morning. In the am, I took him back to the ortho clinic and they were also surprised that the arm hadn't been set right away.
Anyway, T has seen Chase get too many IVs so he was prepared on how he was supposed to act. . . kicking and screaming and fighting all the way, which he did with gutso and after two attempts, the nurses gave up. I kept asking them over and over, if they were going to put him out anyway, why not give him the happy juice and put the IV in while he was asleep. Please, this was not my first trip to the OR and I know my kids. Stubborn and tough as hell and with too many experiences in hospitals. It also didn't help to have 7 adults standing around in a very small room as my little guy goes balastic. One nurse even had the nerve to tell me that T needed counseling. Hello! What does she know about it? What he needs is a mother that isn't always gone, either working or at medical appointments or financial appointments and a family who is not in severe stress. Plus not having 7 strange adults watching him and holding him down to pierce needles in his arm. That's what he needs. Even if I thought he needed counseling (he's 5 people) that would just be more appointments that would further the problem.
I didn't tell her this all at the time because by then I was in tears, not over the procedure, which I'm sure they assumed. Scared mom, yadda yadda, but it was when they told me that they would do it with the juice, but couldn't schedule it until that evening or possibly the next morning, that I got emotional, I couldn't help it. I simply could not manipulate my exhausted mind around the fact that I still had to go to work in a few hours, and finish the profile for SSI medicaid, and get Chase's pulmonolgy visit completed. My mind went in a meltdown right there in front of everybody. No wonder they thought we all needed therapy.
Fortuneately the surgeon took charge, came in and told me that he rescheduled things and was going to do it right away and asked me if I could get T to drink the juice so they wouldn't have to hold him down and attempt an IV again. Then he kindly kicked all those numbskull nurses out of the room so I could calm T down. Guess what, T drank the stuff even though he didn't like it and very shortly got happy and silly and all was well. Why couldn't they have just done that in the first place?
I'll tell you, I've been going to Cook Children's Medical Center for 17 years almost every 3 months if not more. My oldest child died in my arms in that hospital and I think about that everytime I'm there, brace myself every time Chase is admitted and pray that I don't get put in that same room . . . so far we never have, but I've passed it, looked in, remembered . . . but regardless, I would tell anyone that Cooks is the greatest hospital ever and they have always managed things exceedingly well . . . except this one time. I don't know what happened, but from the start in emergency, it was mishandled badly, one thing after another, until the surgeon came on the scene then all fell into place how it should. I even got T home in time for me to go to work.
But then I worked two midnight shifts in a row and was dragging, and seeing that my children were suffering, T physcially, and my oldest boy, who I had hoped would step up to the plate, reacted the other way and has gotten beligerent and acting like he doesn't care. Or he is simply turning into a teenager. O crap, maybe we all do need counseling.
I do have some tremendously good news, but Chase's nebs just finished so I'm off to bed for now, so that will have to wait for later.
Deeper Magic
Since I know how to post pics now, I thought I may as well put up my one and only claim to fame in writing so far (unless I include the essay contest I won in fourth grade from the national guard) I still have that plague and trophy on my shelf right next to a copy of this anthology that one of my short stories is in. Jase's Challenge, beginninng at page 65 if anyone cares to purchase one of the 14 copies left on Amazon. Geez, maybe I better get some since the wonderful little ezine that first published it then put it in their first anthology is no more. Darn shame.
Anyway, I don't really write that many short stories, favoring novels, but this one came from the heart. It's in a fantasy setting (where else?) featuring a veteran of the wars who is bitter and seeking a meaning to what he had fought for. Along the way he meets two young brothers who are trying to find a mother for a hatchling dragon they had taken in.
For a copy of your very own go to: http://www.amazon.com/Deeper-Magic-Jonathon-Earl-Bowser/dp/1586490028/sr=8-5/qid=1158544396/ref=sr_1_5/102-0382741-4893751?ie=UTF8&s=books
But we just got out . . .
So we barely get Chase home, thinking all is well for now, we shouldn't have to go back into the hospital for a while, and we can try and get our lives back on even ground again . . . when I let one of his friends come over because they haven't seen each other for a while. What could happen? The boys just like to play runescape on the computer. Well, Chase was lying on the floor and friend on the couch above him, when the friend simply rolled off and his elbow landed innocently in the middle of Chase's spleen.
Chase told me his stomach hurt, which is pretty much a daily occurance anyway. It was the next day that he told me exactly what happened because he didn't want me to be angry with his friend.
So I take him back to the hospital. I didn't even pack an overnight bag because I was so counting on them telling me he just bruised his stomach and to go home. No way could we end up here again so soon. I'm too exhausted. Our family can't take much more of this. But no, of course things can't be simple. Said elbow ruptured a hole in Chase's poor distended spleen about the length of my finger. This cannot be happening.
Then the fun began. Add a new specilist to our list of doctors, a spleen surgoen, Dr. Bliss. And apparently what to do with spleens is highly debated within the medical community. Is it better to take it out or just leave it in? But of course, ultimately, (they all look at me) that will be your decision. How do you make a decision like that?
But I really didn't have to. They pretty much decided among themselves, my pulmonologist who I trust immensely, explained what he thought would be best for Chase and waited for my nod of agreement. In most cases where the spleen is damaged this bad, they would simply remove it, but since Chase isn't an ordinary kid, they had to factor in whether the spleen was causing more damage or helping more. Yes, his spleen is wreaking havoc and causing all sorts of problems in his body, but it is also producing white blood cells, which Chase is low on anyway and will need to have in order to undergo a liver transplant which is inevitable now. At that time they will probably take out his spleen, but for now they will leave it alone and let the rupture heal on its own.
As for Chase's friend -- I haven't told him or his mother any of this, nor do I intend to. It was an accident. Chase's spleen was fragile. If it didn't happen this way, it would have happened another. Regardless of it not being his fault, how would you feel knowing your child seriously hurt another child? I hope they never find out. That said, I realize it will just take one of my kids to blurt it out.
Chase told me his stomach hurt, which is pretty much a daily occurance anyway. It was the next day that he told me exactly what happened because he didn't want me to be angry with his friend.
So I take him back to the hospital. I didn't even pack an overnight bag because I was so counting on them telling me he just bruised his stomach and to go home. No way could we end up here again so soon. I'm too exhausted. Our family can't take much more of this. But no, of course things can't be simple. Said elbow ruptured a hole in Chase's poor distended spleen about the length of my finger. This cannot be happening.
Then the fun began. Add a new specilist to our list of doctors, a spleen surgoen, Dr. Bliss. And apparently what to do with spleens is highly debated within the medical community. Is it better to take it out or just leave it in? But of course, ultimately, (they all look at me) that will be your decision. How do you make a decision like that?
But I really didn't have to. They pretty much decided among themselves, my pulmonologist who I trust immensely, explained what he thought would be best for Chase and waited for my nod of agreement. In most cases where the spleen is damaged this bad, they would simply remove it, but since Chase isn't an ordinary kid, they had to factor in whether the spleen was causing more damage or helping more. Yes, his spleen is wreaking havoc and causing all sorts of problems in his body, but it is also producing white blood cells, which Chase is low on anyway and will need to have in order to undergo a liver transplant which is inevitable now. At that time they will probably take out his spleen, but for now they will leave it alone and let the rupture heal on its own.
As for Chase's friend -- I haven't told him or his mother any of this, nor do I intend to. It was an accident. Chase's spleen was fragile. If it didn't happen this way, it would have happened another. Regardless of it not being his fault, how would you feel knowing your child seriously hurt another child? I hope they never find out. That said, I realize it will just take one of my kids to blurt it out.
Hopefully Thursday
Yay! Chase will probably get to come home on Thursday. That's a few days earlier than I anticipated. He has all his nurses and respiratory managers wrapped around his little finger. He doesn't get that kind of treatment at home. Pat and I have had to leave him at the hospital on his own since we both work. We've never done that before. One or the other was always there. But Chase is older now too. Last night was the first night he spent without one of us there, and guess what, he was just fine.
I like that my kids are independent. I've never been the type to hover, well, at least not that they'd know. On the third day of kindergarten after I knew that Tate knew his way to class, I pulled the navigator to the side of the curb, and while the other mothers dutifully walked their children into the school, hands held tightly, I grinned at Tate. "Do you want me to walk you in or are you ready to go alone?" I watched his face transform even as he tried not to look so pleased with himself. "I can go without any moms," he said. So I remained in my car and watched him walk with giant, confident strides on little legs until he disappeared inside the school. And so what if I stayed there for a few minutes afterward, you know, just in case.
I like that my kids are independent. I've never been the type to hover, well, at least not that they'd know. On the third day of kindergarten after I knew that Tate knew his way to class, I pulled the navigator to the side of the curb, and while the other mothers dutifully walked their children into the school, hands held tightly, I grinned at Tate. "Do you want me to walk you in or are you ready to go alone?" I watched his face transform even as he tried not to look so pleased with himself. "I can go without any moms," he said. So I remained in my car and watched him walk with giant, confident strides on little legs until he disappeared inside the school. And so what if I stayed there for a few minutes afterward, you know, just in case.
It can always get worse
There was blood in Chase's stools. I made him show me. I used the cardboard part of a hanger to fish it out of the toilet, plop it on a paper plate and stab through it to make sure, hoping it really wasn't, though I already knew it was. Why this? Why now? Could things get any worse, but I fear even letting that thought linger in my head because I know that they can. I believe in God, but where is he?
I took Chase to the emergency room by myself. I prefer it that way. I recite the details very calmly to the check in administrator. I have to state it calmly, oh so matter of factly, or I'll lose it. Then the nurse, then another nurse, then the doctor on duty, as well as Chase's regular specialists as I get them on the phone and tell them where we are and what has happened. Each time I feel my throat closing just a little tighter and I'm not certain my voice will work, or tears won't gush. I can't cry, not one drop or else I can't stop and I'm not the kind of person who can be understood when I get going. Plus Chase is there, worried about himself, and I can't lose it now.
Then I start doing something odd and completely out of character, but it works. It works divinely. In my mind, I start swearing, the most foul, ghastly utterances that I can come up with, many starting with M and F and M and F again. Things that in my worse stressed out shouted swearing moments wouldn't even slip out. It's so ridiculous. But the complete absurdity of it works. My throat loosens and I'm able to stay calm, my voice is steady. Yes, he is on this medication. (&%#$$***&&&n$$$$$) I have my insurance card right here. (&&&**$###**$$%) I first noticed the blood this morning. (&&^**%%%$$%%%).
During the EGD, I was completely alone in the surgery waiting room. My choice. I have friends and family that would have come in a heartbeat if I had even let them know. But I prefer to deal with it alone. If anyone gives me sympathy or says a kind word while I am trying to cope, I will lose it all the way and become a blubbering puddle on the floor. This is the only way I can survive it, alone, without having to speak or explain anything over and over to sympathetic faces. I can't be strong when other people are trying to be strong for me. There will be time for that later, but not right now.
I took Chase to the emergency room by myself. I prefer it that way. I recite the details very calmly to the check in administrator. I have to state it calmly, oh so matter of factly, or I'll lose it. Then the nurse, then another nurse, then the doctor on duty, as well as Chase's regular specialists as I get them on the phone and tell them where we are and what has happened. Each time I feel my throat closing just a little tighter and I'm not certain my voice will work, or tears won't gush. I can't cry, not one drop or else I can't stop and I'm not the kind of person who can be understood when I get going. Plus Chase is there, worried about himself, and I can't lose it now.
Then I start doing something odd and completely out of character, but it works. It works divinely. In my mind, I start swearing, the most foul, ghastly utterances that I can come up with, many starting with M and F and M and F again. Things that in my worse stressed out shouted swearing moments wouldn't even slip out. It's so ridiculous. But the complete absurdity of it works. My throat loosens and I'm able to stay calm, my voice is steady. Yes, he is on this medication. (&%#$$***&&&n$$$$$) I have my insurance card right here. (&&&**$###**$$%) I first noticed the blood this morning. (&&^**%%%$$%%%).
During the EGD, I was completely alone in the surgery waiting room. My choice. I have friends and family that would have come in a heartbeat if I had even let them know. But I prefer to deal with it alone. If anyone gives me sympathy or says a kind word while I am trying to cope, I will lose it all the way and become a blubbering puddle on the floor. This is the only way I can survive it, alone, without having to speak or explain anything over and over to sympathetic faces. I can't be strong when other people are trying to be strong for me. There will be time for that later, but not right now.
Tired
I'm not sure I could describe how tired I am. I drag out of bed at 4:30 am to make sure my lovely not-a-morning-person-either daughter has gotten up so she'll have plenty of time to make herself look fabulous. I get my more self-sufficient son out the door to football practice at 5:45, not looking so fabulous, but very cute in his pads and gear, then I blast my next son's nebulizer treatments in his face while he is still slumbering sweetly until it is time to drive now fabulous looking daughter to seminary at 5:55. When I get home, I either crash on the couch for an hour (I know-a waste of perfect exercise time, but please, this is me) or if I have a morning appointment, I'll get in the shower, then get myself looking fabulous (or not so much) for the day and start all over with the next batch of kids. Get son 2 and son 3 eating breakfast and testing blood sugars, taking pills, getting dressed and brushing teeth and combing hair and all those little things that 8 and 10 year old boys really can't be bothered with. Didn't you wear that shirt yesterday? Turn around and go change, buddy. No, don't just turn it inside out. Well, where did you put your shoes last night? Then while I drive son 3 to school at 8:15 (compliments of my school district who decided that my little neighborhood didn't need bus service even though we are out of the two mile radius)while son 2 walks across the street at 8:30 to the intermediate school. I get back home and have a few hours to run errands, try to make a dent in the vast laundry pile, clean the house that never gets clean and will be a wreck anyway when I come in for work at night, mess around on the computer, and time an extra fifteen minutes to either bribe or talk son 4 into the joys of kindergarten, then off I drive him at 12:15 (again compliments of the school district who used to let us have bus service right on my curb last year- the sweet memory of it all). So did you notice that with all five kids, they all start school at a different time. Then I have 2 1/2 blissful hours to myself, which goes oh so fast. I've been using most of it for errands and groceries and filling out the enormous pile of paperwork that all four schools need in the first weeks, having appointments with school nurses to go over health care plans for CF son and all that kind of stuff. I'm hoping that I'll get organized enough to use a little of that time for writing, yes my lovely indulgence. Of course that is always when my dear heart comes home and finds me on the computer and gives me that look of is-that-what-you've-been-doing-all-day?
Then at 3pm I sit in front of sons 3 & 4 school with tons of other early parents so I can be one of the first in line to get the boys at 3:30 (you know the tune- compliments of my school district who should let the bus drop them off at my home and give me back my half an hour) so I can drive them home, change into my lovely work clothes then haul my flat pale butt to work by 4pm where I will stay until 10pm, midnight on weekends, then drag home, chat with dear heart for a bit, watch some recorded tivo shows to relax until my eyes droop and I pause mid-show then climb into bed.
Yeah, that's pretty much the routine of my average day. I have today and tomorrow off though. I'm so excited. Maybe I can catch up on some rest and helping the kids with their homework. And write! After I get another submission sent off to the last major publisher I'm gonna try. After that, small press baby! And good luck to me!
Then at 3pm I sit in front of sons 3 & 4 school with tons of other early parents so I can be one of the first in line to get the boys at 3:30 (you know the tune- compliments of my school district who should let the bus drop them off at my home and give me back my half an hour) so I can drive them home, change into my lovely work clothes then haul my flat pale butt to work by 4pm where I will stay until 10pm, midnight on weekends, then drag home, chat with dear heart for a bit, watch some recorded tivo shows to relax until my eyes droop and I pause mid-show then climb into bed.
Yeah, that's pretty much the routine of my average day. I have today and tomorrow off though. I'm so excited. Maybe I can catch up on some rest and helping the kids with their homework. And write! After I get another submission sent off to the last major publisher I'm gonna try. After that, small press baby! And good luck to me!
Rejected again
I must be more hopeful than I have any right to be. I keep sending my manuscript to the big gun agents and publishers, and they keep pleasantly rejecting me. I really had my hopes soaring for this last one because she actually requested to see more from my query e-mail. That was exciting. I did the happy dance and everything. But today I got the e-mail that it is not for them and good luck.
Well, there is one more really big gun I want to try, yet at the same time I think I will go the route of smaller presses. I have a really cool looking one in mind that seems good. They check out on predators and editors and such, so off I go.
I'll try not to be too disappointed with the rejection today, or rather I will try and just put it out of mind. There is always that niggling little doubt that creeps in saying, "you're just not a good enough writer".
Then again, it was exciting to get a request for more. Maybe next time I can stick the landing.
Well, there is one more really big gun I want to try, yet at the same time I think I will go the route of smaller presses. I have a really cool looking one in mind that seems good. They check out on predators and editors and such, so off I go.
I'll try not to be too disappointed with the rejection today, or rather I will try and just put it out of mind. There is always that niggling little doubt that creeps in saying, "you're just not a good enough writer".
Then again, it was exciting to get a request for more. Maybe next time I can stick the landing.
The Scheherazade Project
This is my first short (really short) story for the The Scheherazade Project. The theme was dialog so I wrote this entirely in dialog for fun. I've never done that before. Enjoy.
"Just do it. Get rid of them."
"No."
"Look. He's coming back any minute."
"Then you do it."
"No."
"You can't have those when he gets back. Toss 'em somewhere. Just get rid of them. He'll never know."
"Can't. I tried that already."
"He caught ya?"
"It was bad. And he knows where to check now."
"Then you've got no choice. Better just do it."
"No."
"You're never gonna get out. That's crazy. Just give in."
"I can't. I just can't do it."
"Crap. He's coming. You got to get rid of them and you gotta do it fast. Hurry. Shhh. What are you doing? That's not what I meant. Oh, man, you're dead. You are so dead."
"Shut up."
"You're an idiot. You're never gonna get away with it. You think it was bad before."
"I don't care. I'm not going to do it."
"Man. It's that bad?"
"I'll never do it. Never."
"Okay. Um. Let me think."
"You'll help me?"
"I don't know. I'll try. Crap. I just . . . Can you get them back out of there?"
"I . . . no."
"You're dead."
"Do you think, if I did it now, it'd be okay?"
"Can't go back now."
"Oh."
"Yeah."
"What if . . ."
"He's coming."
"Shhh. He won't know."
"Right. I'm outta here."
"Hey . . .!"
"Johnnie? Why are there peas in your pocket?"
"Just do it. Get rid of them."
"No."
"Look. He's coming back any minute."
"Then you do it."
"No."
"You can't have those when he gets back. Toss 'em somewhere. Just get rid of them. He'll never know."
"Can't. I tried that already."
"He caught ya?"
"It was bad. And he knows where to check now."
"Then you've got no choice. Better just do it."
"No."
"You're never gonna get out. That's crazy. Just give in."
"I can't. I just can't do it."
"Crap. He's coming. You got to get rid of them and you gotta do it fast. Hurry. Shhh. What are you doing? That's not what I meant. Oh, man, you're dead. You are so dead."
"Shut up."
"You're an idiot. You're never gonna get away with it. You think it was bad before."
"I don't care. I'm not going to do it."
"Man. It's that bad?"
"I'll never do it. Never."
"Okay. Um. Let me think."
"You'll help me?"
"I don't know. I'll try. Crap. I just . . . Can you get them back out of there?"
"I . . . no."
"You're dead."
"Do you think, if I did it now, it'd be okay?"
"Can't go back now."
"Oh."
"Yeah."
"What if . . ."
"He's coming."
"Shhh. He won't know."
"Right. I'm outta here."
"Hey . . .!"
"Johnnie? Why are there peas in your pocket?"
Broken Car
Something is wrong with my beautiful navigator. Sometimes it will start, sometimes it just doesn't. Very frustrating. Two days ago right when I was about to go to work, I turned the key . . . and nothing. My husband was across town trying to save a deal that he eventually walked out on because the buyers were trying to be dishonest. (I'm so proud of him for that even though we really need the money) Dang dishonest people. Anyway, my neighbours were out of town. I really didn't want to call anyone, but I spy my 8 year old's bike lying on the lawn. Hhmmmm. My work is only 5 mins. away by car. Then again, this is Texas in the middle of the afternoon in July. I haven't ridden a bike in years and this one isn't even my size. Oh, whatever. I'm late. And darn it, I'm dependable. So I grab the bike and off I go.
I'm certain I looked like an idioit. An overweight 40 year old flying down the street on a child's bike. My daughter, 15, was mortified when I told her what I did. Of course, for flavor, I added that all her friends were honking and waving at me. That didn't happen but it was fun seeing the mortified look on A's face.
I made it to work in 20 minutes. Then I was red faced and sweating for another hour. Very professional. But what can you do?
Pat said the car started right up for him when he got home. Figures. We already checked the battery. It is fine, but the lugs were corroded. We cleaned those and hoped that would fix it, but now it is an intermittent problem. Sometimes it starts, sometimes it doesn't. I'm taking it in to the shop tomorrow. More money we don't have down the gutter. Ah, typical life. But for work today, I am prepared. If the nav doesn't start, I've already pumped the tire on my ten-speed.
I'm certain I looked like an idioit. An overweight 40 year old flying down the street on a child's bike. My daughter, 15, was mortified when I told her what I did. Of course, for flavor, I added that all her friends were honking and waving at me. That didn't happen but it was fun seeing the mortified look on A's face.
I made it to work in 20 minutes. Then I was red faced and sweating for another hour. Very professional. But what can you do?
Pat said the car started right up for him when he got home. Figures. We already checked the battery. It is fine, but the lugs were corroded. We cleaned those and hoped that would fix it, but now it is an intermittent problem. Sometimes it starts, sometimes it doesn't. I'm taking it in to the shop tomorrow. More money we don't have down the gutter. Ah, typical life. But for work today, I am prepared. If the nav doesn't start, I've already pumped the tire on my ten-speed.
Too Much First Aid
I attended a first aid class for work today. As the instructor is listing several incidents that could arise, I was keeping a talley in my head.
Infant CPR ... check, I've done that
Infant hemlich ... check
blood in stools ... check
seizures ... check
check
check check check
Man, having a child with a serious health condition really puts you in situatitons that most people don't have to deal with. It's simply a way of life for me and mine.
My middle child has Cystic Fibrosis. I could write all day about that, but I won't. I will say that the CF Foundation's researchers have made tremendous progress, one in particular that C is hugely benefiting from. In simple terms, they discovered that this little valve that pumps natural saline (or salt water) into our lungs to keep the silia moist and moving our mucous along, has a little niche in it and it doesn't work in CFers. No salt water is being pumped into the lungs and the silia (or is it cilia?) is getting squashed by the mucous, which isn't moving out and clogs up all the endrocine systems.
Fortunately researchers are working on fixing the niche in the valve, or replacing the valve with gene therapy. But while they are trying to figure that out, another guy mixed up a close solution of saline to what we naturally produce and tried just getting that down into the lungs with the nebulizer. My son (who's 10) has been on that treatment for little more than a month now and the results are astonishing. Within the first week he was out riding his bike for half an hour when before his lungs lasted maybe 5 minutes. That may seem like a little thing, but for us, it's huge.
To anyone who has ever donated a nickel or dime to the CF Foundation or taken part in the Great Strides Walk, you have my deepest heartfelt appreciation. If I could, I would come wash your car.
Infant CPR ... check, I've done that
Infant hemlich ... check
blood in stools ... check
seizures ... check
check
check check check
Man, having a child with a serious health condition really puts you in situatitons that most people don't have to deal with. It's simply a way of life for me and mine.
My middle child has Cystic Fibrosis. I could write all day about that, but I won't. I will say that the CF Foundation's researchers have made tremendous progress, one in particular that C is hugely benefiting from. In simple terms, they discovered that this little valve that pumps natural saline (or salt water) into our lungs to keep the silia moist and moving our mucous along, has a little niche in it and it doesn't work in CFers. No salt water is being pumped into the lungs and the silia (or is it cilia?) is getting squashed by the mucous, which isn't moving out and clogs up all the endrocine systems.
Fortunately researchers are working on fixing the niche in the valve, or replacing the valve with gene therapy. But while they are trying to figure that out, another guy mixed up a close solution of saline to what we naturally produce and tried just getting that down into the lungs with the nebulizer. My son (who's 10) has been on that treatment for little more than a month now and the results are astonishing. Within the first week he was out riding his bike for half an hour when before his lungs lasted maybe 5 minutes. That may seem like a little thing, but for us, it's huge.
To anyone who has ever donated a nickel or dime to the CF Foundation or taken part in the Great Strides Walk, you have my deepest heartfelt appreciation. If I could, I would come wash your car.
First Post. What now?
I like snooping around on other people's blogs and sites so much that I thought I would set up my own. Now that I am here I feel like a wall flower that came to the wrong party. I hate talking about myself. What was I thinking?
Let's try this: Seven things I would like to do before I die.
1. Travel. Any place. I want to see New Zealand, Scotland, China, Moroco, Montana, anywhere.
2. Get several novels published.
3. Swim with dolphins. I love dolphins. If I believed in reincarnation, I'd put in to come back as a dolphin. Because they are intelligent, get to live in the ocean, and are unafraid of sharks.
4. Go on a cruise with my family, all of my siblings and their kids, and my parents. We don't get together often enough and we always have a great silly time. I laugh ten pounds off at least.
5. Leave each of my kids independent, healthy, kind, and happy.
6. Stay up on the seat wake board longer than one minute.
7. Buy my husband a spanking new harley.
Let's try this: Seven things I would like to do before I die.
1. Travel. Any place. I want to see New Zealand, Scotland, China, Moroco, Montana, anywhere.
2. Get several novels published.
3. Swim with dolphins. I love dolphins. If I believed in reincarnation, I'd put in to come back as a dolphin. Because they are intelligent, get to live in the ocean, and are unafraid of sharks.
4. Go on a cruise with my family, all of my siblings and their kids, and my parents. We don't get together often enough and we always have a great silly time. I laugh ten pounds off at least.
5. Leave each of my kids independent, healthy, kind, and happy.
6. Stay up on the seat wake board longer than one minute.
7. Buy my husband a spanking new harley.
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