Conner Reed Jones, April 14, 2003 to June 24, 2010.
The angel in waiting has finally gotten his wings and will never struggle for breath again.
He will always be in my heart as well as in the hearts of so many.
I refuse to sit by and watch anyone else die from this disease. We WILL find a cure. We WILL see our children grow up.
Friday, June 25, 2010
Thursday, June 24, 2010
Just Breathe
How we take for granted so many things, even something as basic as breathing. Across the country tonight, a little boy named Conner is struggling to do just that.
I found out a few hours ago that 7-year-old CFer Conner is not expected to live through the night. He has been given morphine to make him more comfortable as he leaves his earthly body and arrives to meet his maker in a place where pain is nonexistent and he'll never struggle for breath again.
I hugged my kids a little tighter today, gazed at them a little longer, and told them I loved them until the words almost seemed to lose their meaning. Because it could be them. CF or not, my kids are alive tonight and will open their eyes to the sunshine pouring through their windows tomorrow. I will get another day with them, another day of smiles and laughter and hugs and kisses and playtime and funny conversations. And anything that might seem "bad" in their lives or in mine are insignificant because my kids are not fighting for their lives.
The Jones family occupies my mind, my heart, and my prayers tonight. May they find comfort and peace in this time of unbearable pain.
I found out a few hours ago that 7-year-old CFer Conner is not expected to live through the night. He has been given morphine to make him more comfortable as he leaves his earthly body and arrives to meet his maker in a place where pain is nonexistent and he'll never struggle for breath again.
I hugged my kids a little tighter today, gazed at them a little longer, and told them I loved them until the words almost seemed to lose their meaning. Because it could be them. CF or not, my kids are alive tonight and will open their eyes to the sunshine pouring through their windows tomorrow. I will get another day with them, another day of smiles and laughter and hugs and kisses and playtime and funny conversations. And anything that might seem "bad" in their lives or in mine are insignificant because my kids are not fighting for their lives.
The Jones family occupies my mind, my heart, and my prayers tonight. May they find comfort and peace in this time of unbearable pain.
Thursday, June 3, 2010
My Biggest Worries
This weekend, my husband and I are embarking on a weekend getaway for the first time since we have been married (and, hence, for the first time since we have had kids). We have been married for 4 1/2 years, so we felt like it was long overdue for some couple time sans kiddos. The kids have each spent a single night away from home less than an handful of times; I have spent two days away from Emberlynn on only two occasions (once when I gave birth to Cohen and once when Cohen was hospitalized for CF-related reasons).
We have talked about going on vacations and getaways by ourselves, but we have never actually gotten around to doing it. And I'll confess, it's mostly my own fault that it hasn't happened before. I'm a worrier and a bit uptight, so when it comes to my kids, those qualities are only magnified. If my kids were "normal" kids with no health concerns or special needs (i.e. if they didn't have CF), I would probably be more comfortable leaving them behind and would have done it long before now, I'm sure. But the reality is they aren't just normal kids with basic needs. They require tons of extra stuff that, after typing out all the kids' "instructions" for my mother, consumed over four pages of paper.
Over this past week, I actually made myself physically sick thinking of all the preparations I'd have to make just to be able to go on this weekend trip (packing, typing instructions, etc.). It's not like I can just pack each kid an overnight bag and send them on their way. Sending them anywhere, for even just 1 night (and in this case, they'll be gone for 2), requires packing up what seems like half the house. Aside from the normal clothing and toiletries, we have to pack a giant Vest machine, an air compressor (for nebs), medications, a feeding tube pole and machine plus all the stuff needed for the actual feedings, special food for the kids...the list goes on. It's insane, and it's the biggest reason we don't really go much of anywhere and also the reason we are grateful when we do.
But the packing and preparations part is not my greatest worry as far as sending the kids away. Rather, it is my worry that the things they require won't be done or done right. I realize there are different ways to doing things and that as long as it gets done I should be happy, but these are my kids I am talking about, not a list of chores that need to be done around the house. If one of them misses a treatment or doesn't get a medication at the time they need it, it's not like a pile of dirty dishes left in the sink that can be done later on. This is their health I'm dealing with, so it's not something that can just be left to "get to" at will. And even though they are staying with family members that see us regularly, they still don't understand how much we actually have to do on any given day until they actually are the ones doing it. I'm afraid something will be forgotten or not done correctly simply because they are not used to doing it on a regular basis. It is second nature to me because I do it every day, and it is as much a part of my routine as brushing my teeth or eating a meal.
Having all this to worry about always ultimately makes me change my mind about planning any getaway trips with my husband, even though we really need that alone time together. I always say, "Maybe when they are older." I've been saying this since Emberlynn was a baby, and she's almost 4 1/2.
Everything is booked and paid for (hotel, white water rafting, river boat dinner cruise) and nonrefundable, so even if I wanted to change my mind, I couldn't. I am still a little worried, but I've had time to talk myself into it, and I know it will be good for my husband and I to get out of "Daddy and Mommy mode" and focus on "husband and wife" mode instead for a couple of days.
So tomorrow, we are shipping Emberlynn and Cohen off to Grandma's house for two days. I'll try to refrain from calling constantly, but I will definitely be calling at bedtime to check in and say goodnight to my babies. I'm sure they'll have so much fun playing with everyone and swimming in the pool that they'll hardly notice we're gone, which will help me feel a little bit better about leaving them. Just a little bit.
We have talked about going on vacations and getaways by ourselves, but we have never actually gotten around to doing it. And I'll confess, it's mostly my own fault that it hasn't happened before. I'm a worrier and a bit uptight, so when it comes to my kids, those qualities are only magnified. If my kids were "normal" kids with no health concerns or special needs (i.e. if they didn't have CF), I would probably be more comfortable leaving them behind and would have done it long before now, I'm sure. But the reality is they aren't just normal kids with basic needs. They require tons of extra stuff that, after typing out all the kids' "instructions" for my mother, consumed over four pages of paper.
Over this past week, I actually made myself physically sick thinking of all the preparations I'd have to make just to be able to go on this weekend trip (packing, typing instructions, etc.). It's not like I can just pack each kid an overnight bag and send them on their way. Sending them anywhere, for even just 1 night (and in this case, they'll be gone for 2), requires packing up what seems like half the house. Aside from the normal clothing and toiletries, we have to pack a giant Vest machine, an air compressor (for nebs), medications, a feeding tube pole and machine plus all the stuff needed for the actual feedings, special food for the kids...the list goes on. It's insane, and it's the biggest reason we don't really go much of anywhere and also the reason we are grateful when we do.
But the packing and preparations part is not my greatest worry as far as sending the kids away. Rather, it is my worry that the things they require won't be done or done right. I realize there are different ways to doing things and that as long as it gets done I should be happy, but these are my kids I am talking about, not a list of chores that need to be done around the house. If one of them misses a treatment or doesn't get a medication at the time they need it, it's not like a pile of dirty dishes left in the sink that can be done later on. This is their health I'm dealing with, so it's not something that can just be left to "get to" at will. And even though they are staying with family members that see us regularly, they still don't understand how much we actually have to do on any given day until they actually are the ones doing it. I'm afraid something will be forgotten or not done correctly simply because they are not used to doing it on a regular basis. It is second nature to me because I do it every day, and it is as much a part of my routine as brushing my teeth or eating a meal.
Having all this to worry about always ultimately makes me change my mind about planning any getaway trips with my husband, even though we really need that alone time together. I always say, "Maybe when they are older." I've been saying this since Emberlynn was a baby, and she's almost 4 1/2.
Everything is booked and paid for (hotel, white water rafting, river boat dinner cruise) and nonrefundable, so even if I wanted to change my mind, I couldn't. I am still a little worried, but I've had time to talk myself into it, and I know it will be good for my husband and I to get out of "Daddy and Mommy mode" and focus on "husband and wife" mode instead for a couple of days.
So tomorrow, we are shipping Emberlynn and Cohen off to Grandma's house for two days. I'll try to refrain from calling constantly, but I will definitely be calling at bedtime to check in and say goodnight to my babies. I'm sure they'll have so much fun playing with everyone and swimming in the pool that they'll hardly notice we're gone, which will help me feel a little bit better about leaving them. Just a little bit.
Thursday, May 20, 2010
The Sucky Mom
How do you begin a blog about feeling like a sucky mom? Some days I can ask myself, "How did I do?" and the answer be okay. Other days I just wish I could rewind and do differently.
Sometimes I forget that my kids are just that: kids. They are 4 and 2 years old. They are not little adults and are still learning how to live in the world, are learning what is acceptable and unacceptable, what is wrong and what is right. Sometimes I forget to just let them be kids.
I think I just expect too much of them too much of the time. The bad thing is that I realize this, and yet I still do it. I catch myself doing it a lot when it comes to the kids and their daily routines involving managing their disease. If I sit back and look at the big picture, my kids are ABSOLUTELY AMAZING when it comes to doing their treatments, taking their enzymes, and doing all the daily requirements. Emberlynn sits on the couch for hours a day doing Vest therapy and breathing treatments, and the child has never complained about it. She takes her enzymes like a trooper and gets hooked up to her feeding tube at night without a word. And yet, if there is a day she is grouchy and doesn't feel like coughing "to get the yuckies up" (something she has to do to get up excess mucus), I get upset with her. Or when Cohen refuses to take enzymes, I get frustrated with him, as if this 2-year-old is supposed to understand the circumstances of this progressive disease and that if he doesn't take his enzymes, he doesn't absorb the nutrients from the food he is eating. And speaking of eating, getting the kids to eat adequate amounts of food is something we struggle with on a daily basis. Some days I just let it go, and other days I lose my patience and punish the kids for not eating (i.e. no book at bed, etc.) even though I know that's not the way to go about it. I guess I just get so desperate for them to eat, for them to gain weight and stay healthy, that I throw logic out the window and let my emotions get the best of me. I just forget that they are little and they just don't know. So why do I expect them to know? And better yet, why can't I seem to remember that?
I want my kids to have a great childhood. I want them to enjoy life and to grow up happy. When they are older, I want them to be able to look back and be able to say, "I had a good childhood" instead of, "My mom was a control freak and yelled at us all the time." I don't want to be that mom. I'm not sure who is quoted as saying this,but I think the following quote is definitely true: "We don't raise children. We raise parents." I am constantly learning how to be a parent, and I may never figure out the "best" way to do things, but maybe when we come out on the other side, when the "raising" part is done and the "watching" part begins, everything will turn out okay and my hope of doing the best that I could was indeed the best way.
On a recent rainy day, we were outside a restaurant near the sidewalk, and there were puddles everywhere. The kids wanted to jump in them, and the Kate-Gosselin-control-freak-and-mess-hater in me wanted to tell them, "NO! NO jumping in puddles!" But the smaller, quieter, and heard-less-often part of me decided to allow them to jump away. Because that small part of me knew that socks and shoes can be changed and clothes can be dried, but the wonderment in a child's face and the shrill of their laughter will fade away with time.
Sometimes I forget that my kids are just that: kids. They are 4 and 2 years old. They are not little adults and are still learning how to live in the world, are learning what is acceptable and unacceptable, what is wrong and what is right. Sometimes I forget to just let them be kids.
I think I just expect too much of them too much of the time. The bad thing is that I realize this, and yet I still do it. I catch myself doing it a lot when it comes to the kids and their daily routines involving managing their disease. If I sit back and look at the big picture, my kids are ABSOLUTELY AMAZING when it comes to doing their treatments, taking their enzymes, and doing all the daily requirements. Emberlynn sits on the couch for hours a day doing Vest therapy and breathing treatments, and the child has never complained about it. She takes her enzymes like a trooper and gets hooked up to her feeding tube at night without a word. And yet, if there is a day she is grouchy and doesn't feel like coughing "to get the yuckies up" (something she has to do to get up excess mucus), I get upset with her. Or when Cohen refuses to take enzymes, I get frustrated with him, as if this 2-year-old is supposed to understand the circumstances of this progressive disease and that if he doesn't take his enzymes, he doesn't absorb the nutrients from the food he is eating. And speaking of eating, getting the kids to eat adequate amounts of food is something we struggle with on a daily basis. Some days I just let it go, and other days I lose my patience and punish the kids for not eating (i.e. no book at bed, etc.) even though I know that's not the way to go about it. I guess I just get so desperate for them to eat, for them to gain weight and stay healthy, that I throw logic out the window and let my emotions get the best of me. I just forget that they are little and they just don't know. So why do I expect them to know? And better yet, why can't I seem to remember that?
I want my kids to have a great childhood. I want them to enjoy life and to grow up happy. When they are older, I want them to be able to look back and be able to say, "I had a good childhood" instead of, "My mom was a control freak and yelled at us all the time." I don't want to be that mom. I'm not sure who is quoted as saying this,but I think the following quote is definitely true: "We don't raise children. We raise parents." I am constantly learning how to be a parent, and I may never figure out the "best" way to do things, but maybe when we come out on the other side, when the "raising" part is done and the "watching" part begins, everything will turn out okay and my hope of doing the best that I could was indeed the best way.
On a recent rainy day, we were outside a restaurant near the sidewalk, and there were puddles everywhere. The kids wanted to jump in them, and the Kate-Gosselin-control-freak-and-mess-hater in me wanted to tell them, "NO! NO jumping in puddles!" But the smaller, quieter, and heard-less-often part of me decided to allow them to jump away. Because that small part of me knew that socks and shoes can be changed and clothes can be dried, but the wonderment in a child's face and the shrill of their laughter will fade away with time.
Friday, May 7, 2010
The "Uneventful" Clinic Visit
On Thursday, we trekked to Vandy for the kids' quarterly CF Clinic visit. Despite the flooding in Nashville and various road closures, we actually made it to Vanderbilt in record time. Matt was able to go to this appointment since he is unable to work indefinitely (his work was one of the businesses that was flooded last weekend), so despite the fact that we basically have no source of income right now, it was nice to have Daddy there with us.
I was very proud of Emberlynn because she volunteered to go first (she usually volunteers her brother to be the first to go) and was extremely cooperative for everything, even the throat swab (which she usually cries about). She was absolutely perfect, and I couldn't have been more proud of her. Cohen was a bit crabby due to being up late the night before and having to get up early in the morning. He was cooperative for the initial exam by the nurse (height, weight, oxygen level, and temp checked) and when the doctor examined him (listening to his lungs, feeling his belly, etc.). However, he hated having the EMLA cream put on him to numb his arms prior to having his blood drawn, and he also took great displeasure, as per usual, at having his throat swabbed. (And, on a side note that has nothing directly to do with the appointment, the nurse we saw had an uncanny resemblence to Tina Fey and also possessed her mannerisms...weird!)
I call this appointment "uneventful" because the kids were both given good reports, and no changes were made to their medications or treatment plans. However, to anyone who doesn't go to these appointments on a regular basis, I suppose it would be pretty eventful because of all the things the nurses and doctors have to check and the number of people we have to see (nurse, doctor, dietician, social worker, and respiratory therapist).
I believe the most thrilling part of the whole visit for the kids was getting Dora the Explorer stickers and coloring sheets from Nurse Tina Fey. Emberlynn stuck a sticker on each one of us, so on the way out, we were all sporting our awesome Dora stickers with the wonderful knowledge that the kids are doing well despite that ugly disease called CF.
I was very proud of Emberlynn because she volunteered to go first (she usually volunteers her brother to be the first to go) and was extremely cooperative for everything, even the throat swab (which she usually cries about). She was absolutely perfect, and I couldn't have been more proud of her. Cohen was a bit crabby due to being up late the night before and having to get up early in the morning. He was cooperative for the initial exam by the nurse (height, weight, oxygen level, and temp checked) and when the doctor examined him (listening to his lungs, feeling his belly, etc.). However, he hated having the EMLA cream put on him to numb his arms prior to having his blood drawn, and he also took great displeasure, as per usual, at having his throat swabbed. (And, on a side note that has nothing directly to do with the appointment, the nurse we saw had an uncanny resemblence to Tina Fey and also possessed her mannerisms...weird!)
I call this appointment "uneventful" because the kids were both given good reports, and no changes were made to their medications or treatment plans. However, to anyone who doesn't go to these appointments on a regular basis, I suppose it would be pretty eventful because of all the things the nurses and doctors have to check and the number of people we have to see (nurse, doctor, dietician, social worker, and respiratory therapist).
I believe the most thrilling part of the whole visit for the kids was getting Dora the Explorer stickers and coloring sheets from Nurse Tina Fey. Emberlynn stuck a sticker on each one of us, so on the way out, we were all sporting our awesome Dora stickers with the wonderful knowledge that the kids are doing well despite that ugly disease called CF.
Monday, April 26, 2010
Prayers
It's been a while since I've blogged, and I wish I could say I had some kind of great story or funny anecdote to share with you. But I don't. All I can think of is how much I hate Cystic Fibrosis and how unfair it is for so many people to carry this burden. There are so many diseases and disorders and syndromes and cancers out there that affect so many people, but until something affects you or someone you love, it's impact is not as great.
I am blessed that although my children have CF, they have been relatively healthy, but because CF is a progressive disease, it's always in the back of my mind that things can change in a heartbeat. To borrow a line from another CF parent, as soon as my children took their first breaths, CF began taking away their tomorrows. Only half of people with CF will live to be 37. Half.
There is a CF mom right now whose 7-year-old CFer, Conner, has been put under hospice care. This boy has been through hell, and he just turned 7. I can not imagine either of my kids having to go through even half of what this boy has gone through or fight as hard as he has fought, and yet the end of his life is near, a life that never really even began. Like any child, he talks about what he'll do when he grows up, not realizing that he'll be lucky to even make it to his eighth birthday.
My heart aches for Conner and for his family. His mom, Sarah, blogs about Conner and their everyday struggles, at http://notsobrightandshiny.blogspot.com/. I do hope you visit her blog. She has the courage and strength to speak not only for her son but for all CFers, educating others on this seemingly invisible yet ugly and devastating disease.
I know I could blog forever about CF, about my kids and their struggles, about Conner and his fight, about how much CF sucks, but I've cried enough tears tonight and dwelled in the crappy knowledge that my kids have CF--and other peoples kids have CF--and we can't fix it. We can only pray that one day there will finally be a cure. That one day our kids will be fixed. That one day they will become what they want to be "when they grow up." That one day we can say they won't die from CF and it will be the truth.
For now, I will love my kids with every fiber of my being and never forget to tell them that. I will be the best mom I can be and give them the best life I can give them. In the words of Conner's mom Sarah: "I know [Conner] is only on loan to me from God...and I count each day as a blessing...had I know he was only going to be here with me for seven short years, I would've made them better. I would've been better. I would've done more for him. More smiles...more family memories...but now...it's all moving so swiftly in the other direction that all I have are the undones and what-ifs...and that's devastating." I pray that I will never have to say these words myself. I pray for Sarah and for the rest of Conner's family, that they can find strength and comfort in a time when it's difficult to find such things. Most of all, I pray for a cure for CF, so lives like Conner's won't be lost anymore.
Damn you, CF.
I am blessed that although my children have CF, they have been relatively healthy, but because CF is a progressive disease, it's always in the back of my mind that things can change in a heartbeat. To borrow a line from another CF parent, as soon as my children took their first breaths, CF began taking away their tomorrows. Only half of people with CF will live to be 37. Half.
There is a CF mom right now whose 7-year-old CFer, Conner, has been put under hospice care. This boy has been through hell, and he just turned 7. I can not imagine either of my kids having to go through even half of what this boy has gone through or fight as hard as he has fought, and yet the end of his life is near, a life that never really even began. Like any child, he talks about what he'll do when he grows up, not realizing that he'll be lucky to even make it to his eighth birthday.
My heart aches for Conner and for his family. His mom, Sarah, blogs about Conner and their everyday struggles, at http://notsobrightandshiny.blogspot.com/. I do hope you visit her blog. She has the courage and strength to speak not only for her son but for all CFers, educating others on this seemingly invisible yet ugly and devastating disease.
I know I could blog forever about CF, about my kids and their struggles, about Conner and his fight, about how much CF sucks, but I've cried enough tears tonight and dwelled in the crappy knowledge that my kids have CF--and other peoples kids have CF--and we can't fix it. We can only pray that one day there will finally be a cure. That one day our kids will be fixed. That one day they will become what they want to be "when they grow up." That one day we can say they won't die from CF and it will be the truth.
For now, I will love my kids with every fiber of my being and never forget to tell them that. I will be the best mom I can be and give them the best life I can give them. In the words of Conner's mom Sarah: "I know [Conner] is only on loan to me from God...and I count each day as a blessing...had I know he was only going to be here with me for seven short years, I would've made them better. I would've been better. I would've done more for him. More smiles...more family memories...but now...it's all moving so swiftly in the other direction that all I have are the undones and what-ifs...and that's devastating." I pray that I will never have to say these words myself. I pray for Sarah and for the rest of Conner's family, that they can find strength and comfort in a time when it's difficult to find such things. Most of all, I pray for a cure for CF, so lives like Conner's won't be lost anymore.
Damn you, CF.
Friday, February 12, 2010
Chubby Mommy's Not-So-Chubby Kids are Chubbier!
Yesterday, I took the kids to Vanderbilt for their regular three-month CF Clinic visits. We had to be there by 8 am, which is not a time I would have chosen but was the only time available for this day. I already loathe driving in Nashville, so having to drive in Nashville during the morning rush hour was not something I was looking forward to.
I intended to leave our house at 6:30 am to get there on time, but that didn't exactly happen. Emberlynn was complaining of her "belly hurting" (something we have been hearing from her ever since the doctors switched her to a different feeding tube formula and a topic I was going to be bringing up at clinic later), which usually means she has to do some business in the potty. As soon as we got into the bathroom, Emberlynn threw up all over herself and the floor, enzymes and all. She has a very sensitive stomach, so I think she just felt nauseous from her stomach bothering her. (She was fine the rest of the day). By the time I got her changed, the floor cleaned up, the car warmed up, and the ice scraped off the windows, it was 7 am, and I knew we were going to be late. To top of my crazy morning, I realized I forgot my delicious (and caffeinated) coffee at home; since we were already running late, it was too late to go back for it. I was a bit heartbroken over this.
After battling traffic and people who clearly don't need driver's licenses, we arrived at Vanderbilt half an hour late. (I HATE being late for anything, much less an important doctor's visit.) Fortunately, they were still able to see both kids quickly and without conflict, for which I was very grateful.
In the first room, the kids were weighed and measured by a nurse as usual. Cohen is now big enough to stand on the "big kid" scale and stand against the wall to measure how tall he is. He did a great job, and I was told he had gained a little over a pound, which is still good. (I later found out that he is in the 64th percentile, which is awesome; anything at or above the 50th is our goal!) The best news, however, was that Emberlynn had gained a whopping 3 pounds! She has never put on that much weight in a 3-month period. I was extremely excited, as was the doctor when she looked at the chart later.
Next, the nurse took the kids to the exam room where we waited on the doctor. She examined each child thoroughly and said they both looked great and sounded great (when she listened to their lungs). She saw no need to change any current meds or to change any dosages on the current meds, so that was nice to hear. She asked if I had any concerns or questions about anything, which is when I brought up Em's stomachache complaints, which is more of a topic of discussion with the nutritionist, Kim, who would be coming in after the doctor was finished.
Kim was very pleased with both kids' progress as far as weight gain went, so we mainly discussed Emberlynn's stomach issues and how to address them. We decided to cut back her overnight feeds from 24 ounces to 16 ounces (3 cans to 2 cans) and to see if she would drink the third can during the day, whether it be with a meal or as a snack. If she wouldn't drink it (she's never been thrilled with the taste of the high-calorie drinks), Kim suggested doing a one-hour tube feed during the day. She said if changing it up like this did not work, we would try something else.
We also saw a respiratory therapist, who we have to see at least once a year just to make sure we are performing the therapies and treatments correctly and cleaning all the equipment properly. I found out that Em could get an upgraded nebulizer machine (her old one hasn't been working as well) because it had been 2 years since her last one. The RT called it in yesterday, and it arrived today. They sent a kid-friendly one this time; it's the same machine, but it's green (Em's favorite color) and has a fish on it, so she was super thrilled.
Last, Em had to have her H1N1 booster shot (Cohen had his booster at his 2-year checkup with the pediatrician). She didn't fight them at all (which was quite shocking), and she only cried for a minute or two afterward. I was very proud of her.
Even though I had a rocky start to the day, the positive outcomes of the clinic visit definitely made up for it. It is always wonderful to hear that the kids are in the "green" zone (there are yellow and red zones, too), which means they are doing very well in all areas. The kids' next visit will be May, and I will pray, as I always do, that the updates will stay positive.
I intended to leave our house at 6:30 am to get there on time, but that didn't exactly happen. Emberlynn was complaining of her "belly hurting" (something we have been hearing from her ever since the doctors switched her to a different feeding tube formula and a topic I was going to be bringing up at clinic later), which usually means she has to do some business in the potty. As soon as we got into the bathroom, Emberlynn threw up all over herself and the floor, enzymes and all. She has a very sensitive stomach, so I think she just felt nauseous from her stomach bothering her. (She was fine the rest of the day). By the time I got her changed, the floor cleaned up, the car warmed up, and the ice scraped off the windows, it was 7 am, and I knew we were going to be late. To top of my crazy morning, I realized I forgot my delicious (and caffeinated) coffee at home; since we were already running late, it was too late to go back for it. I was a bit heartbroken over this.
After battling traffic and people who clearly don't need driver's licenses, we arrived at Vanderbilt half an hour late. (I HATE being late for anything, much less an important doctor's visit.) Fortunately, they were still able to see both kids quickly and without conflict, for which I was very grateful.
In the first room, the kids were weighed and measured by a nurse as usual. Cohen is now big enough to stand on the "big kid" scale and stand against the wall to measure how tall he is. He did a great job, and I was told he had gained a little over a pound, which is still good. (I later found out that he is in the 64th percentile, which is awesome; anything at or above the 50th is our goal!) The best news, however, was that Emberlynn had gained a whopping 3 pounds! She has never put on that much weight in a 3-month period. I was extremely excited, as was the doctor when she looked at the chart later.
Next, the nurse took the kids to the exam room where we waited on the doctor. She examined each child thoroughly and said they both looked great and sounded great (when she listened to their lungs). She saw no need to change any current meds or to change any dosages on the current meds, so that was nice to hear. She asked if I had any concerns or questions about anything, which is when I brought up Em's stomachache complaints, which is more of a topic of discussion with the nutritionist, Kim, who would be coming in after the doctor was finished.
Kim was very pleased with both kids' progress as far as weight gain went, so we mainly discussed Emberlynn's stomach issues and how to address them. We decided to cut back her overnight feeds from 24 ounces to 16 ounces (3 cans to 2 cans) and to see if she would drink the third can during the day, whether it be with a meal or as a snack. If she wouldn't drink it (she's never been thrilled with the taste of the high-calorie drinks), Kim suggested doing a one-hour tube feed during the day. She said if changing it up like this did not work, we would try something else.
We also saw a respiratory therapist, who we have to see at least once a year just to make sure we are performing the therapies and treatments correctly and cleaning all the equipment properly. I found out that Em could get an upgraded nebulizer machine (her old one hasn't been working as well) because it had been 2 years since her last one. The RT called it in yesterday, and it arrived today. They sent a kid-friendly one this time; it's the same machine, but it's green (Em's favorite color) and has a fish on it, so she was super thrilled.
Last, Em had to have her H1N1 booster shot (Cohen had his booster at his 2-year checkup with the pediatrician). She didn't fight them at all (which was quite shocking), and she only cried for a minute or two afterward. I was very proud of her.
Even though I had a rocky start to the day, the positive outcomes of the clinic visit definitely made up for it. It is always wonderful to hear that the kids are in the "green" zone (there are yellow and red zones, too), which means they are doing very well in all areas. The kids' next visit will be May, and I will pray, as I always do, that the updates will stay positive.
Wednesday, January 6, 2010
Recipes by Request
Every week, I try to make at least one new recipe. I stumble upon recipes constantly in magazines, online, and in grocery store ads (namely Publix). For Christmas, I received a cookbook I had been eyeballing for a while called "Deceptively Delicious", which happens to be written by Jerry Seinfeld's wife, Jessica. The book has dozens of kid-friendly (and overall family-friendly) recipes that incorporate vegetables and fruits into common recipes without the kids knowing it. In other words, you are hiding the veggies. I have done this for quite some time now, but this book has given me tons more recipes to try using this method. I do jumping jacks inside when I see my kids eat the meals I have made that have veggies and/or fruits hidden in them (because they, like many kids, are quite picky). I make a lot of these recipes for dinner; it's an easy way to make a delicious, nutritious meal for my entire family.
Now that I am trying to lose weight, and because dinner is our family's "biggest" meal of the day, I try to make all my dinners as healthy as possible. I am going to share a few in this blog, all of which have been requested for me to share by at least one person. Enjoy, and be sure to let me know what you think if you try one of these recipes!
Easy Chicken and Cheese Enchiladas (requested by my friend Becca):
Ingredients:
Now that I am trying to lose weight, and because dinner is our family's "biggest" meal of the day, I try to make all my dinners as healthy as possible. I am going to share a few in this blog, all of which have been requested for me to share by at least one person. Enjoy, and be sure to let me know what you think if you try one of these recipes!
Easy Chicken and Cheese Enchiladas (requested by my friend Becca):
Ingredients:
- 1-10.75 oz. can cream of chicken soup (I use Campbell's Healthy Request)
- 1/2 cup sour cream (I use fat free)
- 1 cup Pace Picante sauce
- 2 tsp. chili powder
- 2 cups chopped cooked chicken (I use boneless skinless chicken breast)
- 1/2 cup shredded Monterey Jack cheese
- 6 flour tortillas (6"), warmed (I use whole wheat tortillas)
- 1 small tomato, chopped (optional)
- 1 green onion, sliced (optional)
Directions:
1. Stir the soup, sour cream, picante sauce, and chili powder in a medium bowl.
2. Stir 1 cup picante sauce mixture, chicken, and cheese in a large bowl.
3. Divide the chicken mixure among tortillas. Roll up the tortillas and place them seam-side down in a shallow baking dish. Pour remaining picante sauce mixture over the filled tortillas. Cover baking dish with aluminum foil.
4. Bake at 350 degrees for 40 minutes or until hot and bubbling. Top with tomato and onion (if preferred).
*These were pretty filling. I ate one and was done! I made a couple extra so Matt could have leftovers for lunch the next day.
Party Chicken (requested by my friend Laura): *very delicious but not one of the "healthier" meals I cook*
Ingredients:
- cooking spray (I use canola or olive oil)
- 3 tablespoons unsalted butter
- 1/4 cup flour
- large plastic zip-top bag
- 1 1/2 lb. boneless, skinless chicken breast fillets
- 1/8 tsp pepper
- 1-10.75 oz. can cream of chicken soup (I use healthy request)
- 1/2 cup light mayonnaise (I used Hellman's Light)
- 1 1/2 cup Panka break flakes (Japanase bread crumbs) (these are in the baking aisle next to the regular bread crumbs; at Walmart, they are about $1.50 a box)
- 1 cup shredded cheddar cheese
Directions:
1. Preheat oven to 425 degrees. Coat a 2-quart baking dish with cooking spray. Cut butter into small pieces and place in a medium bowl to soften.
2. Place flour in a large zip-top bag. Season chicken with flour; add to bag. Seal bag tightly; shake to coat. Remove chicken from bag and shake off excess flour. Arrange chicken in baking dish.
3. Combine soup and mayo in a second bowl; spread mixture evenly over chicken. Stir panko and cheese into softened butter, mixing until crumbly. Top chicken with cheese mixture; cover dish with foil. Bake 10 minutes.
4. Remove foil. Bake 10-15 more minutes or until top is golden and internal temp. of chicken reaches 165 degrees.
*This is another very filling dish. A couple of pieces of chicken plus a side of cooked veggies will fill you up easily!*
Healthy Homemade Mac 'n' Cheese #1 (requested by my mom and my sister Shauna)
*For this recipe, you have to steam and puree the cauliflower and/or butternut squash ahead of time. I puree a big batch at one time and freeze it in 1/2 cup portions so that I can easily use a puree when I need one. If you need help making the purees, let me know!*
Ingredients:
- 1 1/2 cups elbow macaroni (I use whole-grain or whole-wheat)
- nonstick cooking spray
- 1 tbsp olive oil
- 1 tbsp all-purpose flour
- 1/2 cup skim milk (or low-fat)
- 1/2 cup butternut squash or cauliflower puree
- 1 1/2 cups shredded cheddar cheese
- 4 oz. reduced-fat or nonfat cream cheese
- 1/2 tsp salt
- 1/8 tsp paprika
- 1/8 tsp pepper
Directions:
1. Bring a large pot of salted water to a boil, add the macaroni, and cook according to package directions until al dente. Drain in a colander.
2. While the macaroni is cooking, coat a large saucepan with cooking spray and heat over medium heat. Add the olive oil, then the flour, and cook, stirring constantly, until the mixture resembles a thick paste but has not browned, 1 to 2 minutes.
3. Add the milk and cook, stirring every now and then, until the mixture begins to thicken, 3 to 4 minutes. Add the vegetable puree, cheddar, cream cheese, and seasonings, and stir until the cheese is melted and sauce is smooth. Stir in the macaroni and serve warm.
Sunday, January 3, 2010
A Less Chubby Mommy, Part 1
I have been heavy most of my life. I was allowed to eat whatever pretty much whenever, and a part of me wishes someone had stepped in when I was a child and didn't know any better so I would not have ended up heavy as an adult.
When I finally got old enough to realize that so many of the things I had grown up eating were so unhealthy, I knew had to do something about it, but knowing is one thing. Doing is something entirely different.
When I was eighteen, I moved out on my own (I had a roommate) and therefore had to buy my own groceries. I ended up almost completely giving up sodas and not eating dessert at night, two things I had always had when I lived at home and contributed to my eight-plus years of unhealthy weight gain. I had previously started drinking water (something I had never done growing up, except for the occasional sips from the water fountain at school, which were probably more for the benefit of getting out of the classroom for two minutes rather than its healthful advantages). I dropped over twenty-five pounds with virtually no effort, merely because I didn't have the access to those things anymore.
Nowadays, the only excuse I have is my lack of motivation. Of course, I want to lose weight. I don't know any heavy person who loves being heavy, and if they tell you they do, they are only lying to you and to themselves. Not only are we heavy, we are unhealthy. We have a higher risk of many diseases, including but certainly not limited to, diabetes, heart disease, and hypertension.
My biggest challenges are sweets and lack of exercise. I love chocolate. I'm not one of those people who will down an entire bag of Hershey Kisses or anything, but passing through the kitchen several times and day and popping a piece of chocolate here and there will really add up at the end of the day. As for exercise, I feel like I'm getting a workout keeping up with my two kids all day, and the last thing I want to do is exercise in the evenings after they get to bed, and I definitely don't have the motivation to get up before my kids in the morning to squeeze in a workout. A tired mommy=a cranky mommy and a cranky mommy=cranky children (if a=b and b=c, a will always equal c, right?).
But don't get me wrong. I am definitely not as unhealthy as I used to be. When I was younger, here's what my daily food intake might look like:
Breakfast: 2 pop tarts or an oversized portion of some high-sugar cereal with milk
Lunch: pizza and fries from the school cafeteria, or if I was at home, Ramen noodles, Totino's frozen pizza, or other processed foods
Afternoon snack: chips, cookies, or snack cakes
Dinner: whatever my mom made and usually seconds and maybe thirds (She wasn't the unhealthiest cook, but she also wasn't the healthiest)
Dessert: ice cream or some other crapola
Wow, that totally makes me sick just thinking about all that. No wonder I put on so much weight through my pre-teen and teen years. I don't even buy pop tarts, chips, snack cakes, or ice cream now, unless it's for my kids (because they have CF and are on a high-calorie diet; you can read more about that in my CF blogs). Don't worry, my diet has gotten much better since then. Here is what my food intake is like today:
Breakfast: 1 serving whole grain cereal with 1/2 cup 1% milk
A.M. Snack (if any): fruit or high-fiber, low-cal granola bar
Lunch: Lean cuisine or 1 serving of previous night's dinner leftovers, raw carrots and/or fresh fruit
P.M. Snack (if any): fruit or high-fiber, low-cal granola bar
Dinner: 1 serving lean meat, veggies, and side item; sometimes salad, etc.
Dessert: rare
I can tell you I do a lot of things right. I drink a lot of water; I eat vegetables and fruits; I eat lean meats and don't eat much red meat (and when I do, it's lean); I rarely drink soda; and the list goes on. So, why, do you ask, can I not lose weight? Let's factor in my sweet tooth and lack of exercise. I constantly crave chocolate, and I can always find some, even if it's just mixing up a glass of chocolate milk. Then you add my sweet tea addiction; even though the antioxidants in the tea is good for you, the sugar in it is not. Finally, factor in the fact that I don't exercise like I am supposed to, and you end up getting the final product: a chubby mommy.
I still weigh less than I did in high school, but not by much. I eat way better than I did, which is why I haven't gotten bigger (I'd hate to think what I'd look like if I never got rid of all those bad habits). Looking back, I see that I really have made a "lifestyle change" instead of doing this diet and that diet and rebounding in the end. But I do realize I still have some changing to do if I'm ever going to lose all the extra weight.
It's the beginning of a new year, but this is not a "New Year's resolution." It's time I finally change my life. I'm going to do it for me: to be healthier, to feel better on the inside and out, and to finally be able to look in the mirror and like what I see in front of me. I'm going to do it for my children so that I can worry only about them and their health rather than taking a chance on my own and worrying if I'm going to be around long enough to take care of them.
I know I can do this. I also know I'm going to feel discouraged at times (probably a lot of the time), but I am going to set short-term weekly weight-loss goals and achieve them little by little until I finally reach my 75-pound weight loss goal. Although I am comfortable enough to talk about being heavy, I am not comfortable with sharing my weight at this point, but when I reach my 50-pound goal in June (I want to lose 75 by the end of the year), I will gladly share my starting weight.
Last week was the first week of this new weight-loss journey. My goal was to lose 2 pounds. I concentrated on drinking plenty of water, portioning my food, exercising, and limiting sweets. I reached my goal plus one pound: I am now 3 pounds lighter. I like saying it that way. I'm lighter. Not heavier. Not bigger. I feel awesome.
The weight watchers commercials always say that people lose more weight when they do it with others than when they do it alone. This is why I am blogging about it. I want to share it so I don't feel like I'm in this alone. I need the support and encouragement to keep this up.
And if you want to join me on this journey, I say, "The more, the merrier!" We can do this together! I have tons of ideas, tips, and healthy recipes to share, and I'm sure I could learn some new things myself.
3 pounds gone....take that, fat!
When I finally got old enough to realize that so many of the things I had grown up eating were so unhealthy, I knew had to do something about it, but knowing is one thing. Doing is something entirely different.
When I was eighteen, I moved out on my own (I had a roommate) and therefore had to buy my own groceries. I ended up almost completely giving up sodas and not eating dessert at night, two things I had always had when I lived at home and contributed to my eight-plus years of unhealthy weight gain. I had previously started drinking water (something I had never done growing up, except for the occasional sips from the water fountain at school, which were probably more for the benefit of getting out of the classroom for two minutes rather than its healthful advantages). I dropped over twenty-five pounds with virtually no effort, merely because I didn't have the access to those things anymore.
Nowadays, the only excuse I have is my lack of motivation. Of course, I want to lose weight. I don't know any heavy person who loves being heavy, and if they tell you they do, they are only lying to you and to themselves. Not only are we heavy, we are unhealthy. We have a higher risk of many diseases, including but certainly not limited to, diabetes, heart disease, and hypertension.
My biggest challenges are sweets and lack of exercise. I love chocolate. I'm not one of those people who will down an entire bag of Hershey Kisses or anything, but passing through the kitchen several times and day and popping a piece of chocolate here and there will really add up at the end of the day. As for exercise, I feel like I'm getting a workout keeping up with my two kids all day, and the last thing I want to do is exercise in the evenings after they get to bed, and I definitely don't have the motivation to get up before my kids in the morning to squeeze in a workout. A tired mommy=a cranky mommy and a cranky mommy=cranky children (if a=b and b=c, a will always equal c, right?).
But don't get me wrong. I am definitely not as unhealthy as I used to be. When I was younger, here's what my daily food intake might look like:
Breakfast: 2 pop tarts or an oversized portion of some high-sugar cereal with milk
Lunch: pizza and fries from the school cafeteria, or if I was at home, Ramen noodles, Totino's frozen pizza, or other processed foods
Afternoon snack: chips, cookies, or snack cakes
Dinner: whatever my mom made and usually seconds and maybe thirds (She wasn't the unhealthiest cook, but she also wasn't the healthiest)
Dessert: ice cream or some other crapola
Wow, that totally makes me sick just thinking about all that. No wonder I put on so much weight through my pre-teen and teen years. I don't even buy pop tarts, chips, snack cakes, or ice cream now, unless it's for my kids (because they have CF and are on a high-calorie diet; you can read more about that in my CF blogs). Don't worry, my diet has gotten much better since then. Here is what my food intake is like today:
Breakfast: 1 serving whole grain cereal with 1/2 cup 1% milk
A.M. Snack (if any): fruit or high-fiber, low-cal granola bar
Lunch: Lean cuisine or 1 serving of previous night's dinner leftovers, raw carrots and/or fresh fruit
P.M. Snack (if any): fruit or high-fiber, low-cal granola bar
Dinner: 1 serving lean meat, veggies, and side item; sometimes salad, etc.
Dessert: rare
I can tell you I do a lot of things right. I drink a lot of water; I eat vegetables and fruits; I eat lean meats and don't eat much red meat (and when I do, it's lean); I rarely drink soda; and the list goes on. So, why, do you ask, can I not lose weight? Let's factor in my sweet tooth and lack of exercise. I constantly crave chocolate, and I can always find some, even if it's just mixing up a glass of chocolate milk. Then you add my sweet tea addiction; even though the antioxidants in the tea is good for you, the sugar in it is not. Finally, factor in the fact that I don't exercise like I am supposed to, and you end up getting the final product: a chubby mommy.
I still weigh less than I did in high school, but not by much. I eat way better than I did, which is why I haven't gotten bigger (I'd hate to think what I'd look like if I never got rid of all those bad habits). Looking back, I see that I really have made a "lifestyle change" instead of doing this diet and that diet and rebounding in the end. But I do realize I still have some changing to do if I'm ever going to lose all the extra weight.
It's the beginning of a new year, but this is not a "New Year's resolution." It's time I finally change my life. I'm going to do it for me: to be healthier, to feel better on the inside and out, and to finally be able to look in the mirror and like what I see in front of me. I'm going to do it for my children so that I can worry only about them and their health rather than taking a chance on my own and worrying if I'm going to be around long enough to take care of them.
I know I can do this. I also know I'm going to feel discouraged at times (probably a lot of the time), but I am going to set short-term weekly weight-loss goals and achieve them little by little until I finally reach my 75-pound weight loss goal. Although I am comfortable enough to talk about being heavy, I am not comfortable with sharing my weight at this point, but when I reach my 50-pound goal in June (I want to lose 75 by the end of the year), I will gladly share my starting weight.
Last week was the first week of this new weight-loss journey. My goal was to lose 2 pounds. I concentrated on drinking plenty of water, portioning my food, exercising, and limiting sweets. I reached my goal plus one pound: I am now 3 pounds lighter. I like saying it that way. I'm lighter. Not heavier. Not bigger. I feel awesome.
The weight watchers commercials always say that people lose more weight when they do it with others than when they do it alone. This is why I am blogging about it. I want to share it so I don't feel like I'm in this alone. I need the support and encouragement to keep this up.
And if you want to join me on this journey, I say, "The more, the merrier!" We can do this together! I have tons of ideas, tips, and healthy recipes to share, and I'm sure I could learn some new things myself.
3 pounds gone....take that, fat!
Mommy's Little Man
I know it's an old cliche that "it seems like just yesterday" my child was born. But it really does seem like only yesterday I was bringing my son into the world. I never knew I could love a little boy so much! Cohen turned 2 a couple of weeks ago, and although this blog is a bit late, I'm sure anybody who has a 2-year-old will forgive me. He sure does keep me busy, as does my preschool-age daughter, who will be 4 on Valentine's Day. This blog is for him, but it's also for me because I get to relive the day he came into my life.
Christmas 2007 was approaching, and Cohen was due on New Year's Day. I was worried he'd end up being born on Christmas day and would be one of those kids who would grow up hating having a Christmas birthday. (Perhaps this was poor planning on Mommy and Daddy's part as far as conception.) At my 37-week check-up, I was 4 cm dilated but was not contracting, and my doctor told me that if I dilated any more at the next week's check-up but was not in labor she would induce me.
On Friday, December 21st, I brought my hospital bag to the doctor with me in hopes that I would have progressed enough to be induced. Sure enough, I was at about 4.5 cm and was told I was in "early latent labor" and could be induced. My doctor's words were, "Do you want to have a baby today?" to which I replied, "Oh, yes, please!" I loved being pregnant, but the past few months had been particularly uncomfortable for me, especially when it came to trying to sleep at night. I was ready to meet my son.
My doctor broke my water at about 1 pm, and I was given Pitocin soon after. Because I had gone into labor naturally with my daughter (my water broke on it's own and I contracted normally without any help from Pitocin), I had never had the Pitocin before. I was determined to have a natural labor with my son just as I had with Emberlynn (meaning: no epidural). My labor with my daughter was incredibly painful, but my labor with Cohen was beyond unbearable because of the Pitocin; however, I made it through without the epidural, and Cohen Micah Anderson was born at 8:12 pm weighing 7 pounds, 13 ounces and measuring 19.5 inches long.
We brought Cohen home just two days before Christmas. It definitely took some adjusting to go from having one child to two, but soon it just became second nature and felt like it had always been that way.
And what a busy and adventurous two years it has been! Cohen is a happy, fun-loving, friendly, and overall amazing little boy, and he is definitely a Mommy's boy (although he loves hanging out and having fun with Daddy, too). He loves reading, coloring, Elmo, guitars, and playing with his big sister.
Happy 2nd Birthday to my little man!
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