Wednesday, June 30, 2010
Wellness Challenge
There are just a couple more days left to sign up for the Wellness Challenge. I'm so excited that almost 20 ladies have signed up so far!!! I started a seperate blog at Get Your Mojo Back, if you want to look over the info. We are starting Monday, so if you are intereted leave me a message here or on that blog, or send me an email at skadams80@msn.com. Hope you join us!!
Wednesday, June 23, 2010
Looking for my mojo!
Needless to say that since babe number three I've lost a little of my mojo. I've been in survival mode for 5 months. Well I'm tired of survival mode. I want to feel like I accomplished something each day. I want a plan. I want a schedule. So I want to start a
WELLNESS CHALLENGE!!!
Have you heard about this?!?!? There is another wellness challenge going on here, and here so you can get an idea how it works. Click on all the links and it will make sense. But basically if you are up for the challenge, you put $10 into the pot. It is a 3 month challenge. There are 10 tasks to complete each day, and you get a point for each task that you do. Some are to help you lose weight, other spiritual, others to help get your house together and organized. Anyway, if you are interested leave me a comment, and if there are enough ladies I will make a quick little blog, to keep track of all of our points. And all of us can post helpful tips, or what our goals are for the week, etc. Then at the end of the three months the points will be totaled and the pot will be split in a similar way to how it is set up on the example blog. I think there will be one or two things I would want to do differently. First, there would only be 6 days a week where you exercise for 45 minutes (so we can take sunday off) and I think I would throw in a couple extra bonus point tasks, just to mix it up, every couple of days. Let me tell you now, there are 3 or 4 tasks that will be really hard for me to get my points for each week! I really hope you guys will join me, and see how different our daily lives will be after 3 months!
P.S. Its all honor code.
P.S.S Some of the daily goals are read your scriptures for 10 minutes. Write in your journal. Drink 6 glasses of water. You get a point if you don't drink any soda (ya I'm screwed!), that sort of thing.
Update on Carter
So almost a month ago we had another botox/dilation procedure done on Carters throat. After consulting with other ENT specialists at a national conference, the surgeon decided to do twice as much botox as the literature suggests. Then we had to wait three weeks before we could have another swallow study done, to see the results of the botox. However, the doctor did advise us to give him small amounts of pedialyte, and see if he chokes. If he does stop. If he doesn't great. So we gave him a couple bottles over the three week period. With some of them he did great, with others he choked immediately. So we were obviously confused. Was the muscle open, or not? Well it turns out, it is not. On the swallow study you can see the muscle still bulging into his esphosgus, blocking the milk from continuing down into the stomach. Well what about those times he drank the small amounts just fine? It turns out that he is still a "silent aspirator". That means that liquid is going into his airway, but he doesn't cough right away. So it appears that he is drinking just fine when he really isn't. Toot Toot. Here comes the mommy train. All aboard! Next stop GUILTVILLE.
So now what? That is the million dollar question. The only other treatment is surgery. Generally the surgery is done by slicing open the neck, moving all the major arteries to the side, and then cutting the muscle in half, so that it physically can not contract into the esphogus. There is a new technique where a laser is used. There is no incision, and the laser is passed through the mouth. So that is great news. Bad side, is that our surgeon (and really every surgeon) has only done the surgery with the laser 1 time, because it is such a rare condition, and the technique is so new. I'm just going to pretend I don't know that bit of information at this exact moment, or my head may explode.
The other thing is that the surgery really has never been done on a baby younger than a year. Carter is 5 1/2 months. The one other time he has done the surgery, just recently was on an almost 2 year old. I spoke with him a couple days ago, and he said he needs about a week, to consult with others, and really think through the surgery. He wants to think about it and figure out every possible scenario that may happen in surgery and after, on a 6 month old. He wants to make sure that the risk of the surgery is outweighed by the benifits. He did say to prepare for Carter to be admitted to the ICU on IV antibiotics for a week or so, because its a high infection situation, and Carter is so little he would have a really hard time fighting an infection. Ugh! Whenever I see an ad for UMC, or we have to go back for his procedures, I almost have a panic attack. I feel like we will never leave again. I know thats silly, but it scares the monkeys out of me.
So to make things more complicated. The occupational therapist fervently says do the surgery now. He needs to experience purees. Eating is not only a massive step developmentally wise, but also socially. And if he develops a food aversion, from not eating anything orally for the first year of life, she says that it will take YEARS to overcome. Meaning keeping the G-tube for years. And food aversion is not something that you can solve medically. The baby really has to overcome a mental block from eating, which when you are dealing with a little baby that can't communicate its a big problem. The thing that kills me is that HE LOVES TO EAT. When we were giving him the small amounts of liquid, we were giving it to him in a bottle at the same time as we were feeding him through his G-tube. Well when we had to stop, he just screamed and screamed through every feeding because we weren't giving him a bottle. When we are at the dinner table he is reaching for food, and grabbing my spoon.
Well here is the complicated part. Our peditrician fervently says DON'T do the surgery until he is a year. Everything in his throat will be bigger by then, there is less chance of a mistake. He will be able to handle the surgery better, and he can always LEARN how to eat. She wants us to go see an expert in the field of this specific condition. Okay doctor, can you give me his name and phone number? No? Oh yeah, there isn't one! The thing about this, is that although I am a fantastic, perfect house keeper (HAHAHA) there may be an occasional cherrio on the floor, and once he gets mobile and pops that cherrio in his mouth, and we then have a cherrio in his lungs, what do we do then.
So OT says yes to surgery...pediatrican says no....surgeon is....thinking. Sigh.
What do I think? I don't know what to think. I'm scared that the botox or dilation didn't work the last 3 times, so will the surgery work. The ENT specialist cant' be sure. Just the tests show this is what is wrong, and this is the treatment. The major side effect of the surgery is scar tissue, that may block the esphogus to some degree as well. But we can't just keep injecting higher and higher quanitities becasue there is a chance of damage to the vocal cords if too much is used.
I want my baby to be healthy, and I want to give the surgery the best chance of sucess, but I also want him to be happy. I can't even envision preventing a 10, 11, 12 month old baby from putting things in their mouth, and if he did there is a huge risk of pnemonia. I feel like we are forced to not choose the better of two options, but the lesser of two evils.
So I guess the surgeon is the deciding vote. I have total trust in him. I know his sister, and she said that he prays about his cases, and would do for your child exactly what he would do for his own. I trust his judgement. I know that he will do what he thinks is best for Carter. Carter isn't just another case to him. He's not a meal ticket or a number. He is Carter.
A friend posted this on her blog. I know "Good Things Will Come."
So now what? That is the million dollar question. The only other treatment is surgery. Generally the surgery is done by slicing open the neck, moving all the major arteries to the side, and then cutting the muscle in half, so that it physically can not contract into the esphogus. There is a new technique where a laser is used. There is no incision, and the laser is passed through the mouth. So that is great news. Bad side, is that our surgeon (and really every surgeon) has only done the surgery with the laser 1 time, because it is such a rare condition, and the technique is so new. I'm just going to pretend I don't know that bit of information at this exact moment, or my head may explode.
The other thing is that the surgery really has never been done on a baby younger than a year. Carter is 5 1/2 months. The one other time he has done the surgery, just recently was on an almost 2 year old. I spoke with him a couple days ago, and he said he needs about a week, to consult with others, and really think through the surgery. He wants to think about it and figure out every possible scenario that may happen in surgery and after, on a 6 month old. He wants to make sure that the risk of the surgery is outweighed by the benifits. He did say to prepare for Carter to be admitted to the ICU on IV antibiotics for a week or so, because its a high infection situation, and Carter is so little he would have a really hard time fighting an infection. Ugh! Whenever I see an ad for UMC, or we have to go back for his procedures, I almost have a panic attack. I feel like we will never leave again. I know thats silly, but it scares the monkeys out of me.
So to make things more complicated. The occupational therapist fervently says do the surgery now. He needs to experience purees. Eating is not only a massive step developmentally wise, but also socially. And if he develops a food aversion, from not eating anything orally for the first year of life, she says that it will take YEARS to overcome. Meaning keeping the G-tube for years. And food aversion is not something that you can solve medically. The baby really has to overcome a mental block from eating, which when you are dealing with a little baby that can't communicate its a big problem. The thing that kills me is that HE LOVES TO EAT. When we were giving him the small amounts of liquid, we were giving it to him in a bottle at the same time as we were feeding him through his G-tube. Well when we had to stop, he just screamed and screamed through every feeding because we weren't giving him a bottle. When we are at the dinner table he is reaching for food, and grabbing my spoon.
Well here is the complicated part. Our peditrician fervently says DON'T do the surgery until he is a year. Everything in his throat will be bigger by then, there is less chance of a mistake. He will be able to handle the surgery better, and he can always LEARN how to eat. She wants us to go see an expert in the field of this specific condition. Okay doctor, can you give me his name and phone number? No? Oh yeah, there isn't one! The thing about this, is that although I am a fantastic, perfect house keeper (HAHAHA) there may be an occasional cherrio on the floor, and once he gets mobile and pops that cherrio in his mouth, and we then have a cherrio in his lungs, what do we do then.
So OT says yes to surgery...pediatrican says no....surgeon is....thinking. Sigh.
What do I think? I don't know what to think. I'm scared that the botox or dilation didn't work the last 3 times, so will the surgery work. The ENT specialist cant' be sure. Just the tests show this is what is wrong, and this is the treatment. The major side effect of the surgery is scar tissue, that may block the esphogus to some degree as well. But we can't just keep injecting higher and higher quanitities becasue there is a chance of damage to the vocal cords if too much is used.
I want my baby to be healthy, and I want to give the surgery the best chance of sucess, but I also want him to be happy. I can't even envision preventing a 10, 11, 12 month old baby from putting things in their mouth, and if he did there is a huge risk of pnemonia. I feel like we are forced to not choose the better of two options, but the lesser of two evils.
So I guess the surgeon is the deciding vote. I have total trust in him. I know his sister, and she said that he prays about his cases, and would do for your child exactly what he would do for his own. I trust his judgement. I know that he will do what he thinks is best for Carter. Carter isn't just another case to him. He's not a meal ticket or a number. He is Carter.
A friend posted this on her blog. I know "Good Things Will Come."
Friday, June 18, 2010
How do you raise a baby?
Today Kyra walked in the room with a plastic baby pony in one hand, and a mommy pony in the other. She asked "Mommy how do you raise a baby?" I explained that we have raised her since she was born. We have loved her, taken care of her, kept her safe, taught her, etc. She asked numerous questions about all the little details of my explanation. After about 15 minutes she got this silly little look on her face and said "Mommy that's not how you raise a baby. This is how you raise a baby!" She put the baby pony on the mommy pony's back and raised them both into the air. Then she giggled and giggled in her "I got you" voice and ran away. Silly girl. 
Sunday, June 13, 2010
5 months!!
I can't believe it has been five months! 
Carters health has been an up and down rollarcoaster, which *knock on wood* is on an upswing. The surgeon went to a national conference and presented Carters case to the other specialists and the general concensus was that the first time around he didn't use enough botox. So we back to the hospital and the surgeon redilated and botoxed his throat. This is just a temporary fix (if it ever works). The goal is to get Carter at least older than 6 months, and hopefully a year old before we have to have surgery. The surgery is basically just cutting the muscle in his throat in half with a laser, so the muscle can never contract again. But there are risks, and the risks are much higher the younger he is. So we are just buying time. One of the side effect of the surgery is acid reflux, because that muscle is open permenately, so not only can food go down, but it can also come back up. About 3 days post op things got really bad. This poor kid was just throwing up, and refluxing over and over, and you could smell the acid in his throat, and crying, and crying and crying some more for about 18-20 hours a day. Lets just say I almost lost my mind. I would suction this acid/formula mixture out of his nose and throat a million times a day. We were giving him 3 medications. One of them twice a day, another 6 times a day, and the other about 5-7 times a day. One of them, after prolonged use had side effects, but I don't even want to imagine life if he hadn't been on the medicines. I was also holding him upright during the day again, and also mixing his formula with A LOT of rice cereal, and syringing that into his tube, to try and weigh down the food in his stomach. Well, I went to the pharmacy one day to refill his prescription and they informed me that they were out of stock of the main medication, so they contacted the pedatrician, and switched him to a different medication, which is basically the same. It was cheaper then his current medication, but I started to panic, thinking of the adjustment period for the new medication. Let me tell you.... IT IS THE MIRACLE/MAGIC/MAGNIFICENT DRUG OF THE MILLENIUM!!! We gave him his first dose and about 30 minute later, he smiled. Then smiled again. And was happy, and laid on his back as content as a monkey in a sack full of bananas. And an hour passed, and two hours passed. We were trying to decide if we should give him his other two medication, but decided to wait. In the past two weeks he has sort of kind of refluxed 1 time!! Yes one time!!! He is only on the one medication, two times a day now. I can't tell you how much this has changed our lives!!
Carters health has been an up and down rollarcoaster, which *knock on wood* is on an upswing. The surgeon went to a national conference and presented Carters case to the other specialists and the general concensus was that the first time around he didn't use enough botox. So we back to the hospital and the surgeon redilated and botoxed his throat. This is just a temporary fix (if it ever works). The goal is to get Carter at least older than 6 months, and hopefully a year old before we have to have surgery. The surgery is basically just cutting the muscle in his throat in half with a laser, so the muscle can never contract again. But there are risks, and the risks are much higher the younger he is. So we are just buying time. One of the side effect of the surgery is acid reflux, because that muscle is open permenately, so not only can food go down, but it can also come back up. About 3 days post op things got really bad. This poor kid was just throwing up, and refluxing over and over, and you could smell the acid in his throat, and crying, and crying and crying some more for about 18-20 hours a day. Lets just say I almost lost my mind. I would suction this acid/formula mixture out of his nose and throat a million times a day. We were giving him 3 medications. One of them twice a day, another 6 times a day, and the other about 5-7 times a day. One of them, after prolonged use had side effects, but I don't even want to imagine life if he hadn't been on the medicines. I was also holding him upright during the day again, and also mixing his formula with A LOT of rice cereal, and syringing that into his tube, to try and weigh down the food in his stomach. Well, I went to the pharmacy one day to refill his prescription and they informed me that they were out of stock of the main medication, so they contacted the pedatrician, and switched him to a different medication, which is basically the same. It was cheaper then his current medication, but I started to panic, thinking of the adjustment period for the new medication. Let me tell you.... IT IS THE MIRACLE/MAGIC/MAGNIFICENT DRUG OF THE MILLENIUM!!! We gave him his first dose and about 30 minute later, he smiled. Then smiled again. And was happy, and laid on his back as content as a monkey in a sack full of bananas. And an hour passed, and two hours passed. We were trying to decide if we should give him his other two medication, but decided to wait. In the past two weeks he has sort of kind of refluxed 1 time!! Yes one time!!! He is only on the one medication, two times a day now. I can't tell you how much this has changed our lives!! In terms of his feeding. The surgeon wanted us to try feeding him and see if he choked or not. We gave him his first bottle, just 15 mLs and he had no problems. Then the next bottle he drank only 5 mLs or so and choked. Then the next one he did fine, the next two bottles he choked. So we have NO idea what is going on right now. Whether it is open or not. We have another swallow study on Wednesday, so we will have a more scientific answer than "Was that a cough? I don't know, did it sound like a cough to you? Well kind of."
Now he is 5 months old. He is still super skinny...like 12 lbs skinny, but is in the 75% for height. None of our kids got above the 5% for weight until they were at least 2 years old though. He laughs. Giggles. Is very ticklish in his rib cage and on his back. Loves to coo. ADORES KYRA!! Just relized we have dogs a couple days ago. Bangs his head into my chest when he gets shy. Just discovered he has toes. LOVES TO STAND!! He is not a fan of tummy time. Rolls over. We love our little HAPPY man!
Thursday, June 10, 2010
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