Me: "Can boys do anything that girls can't do?
K: "Pee with a penis."
We live in a bilingual home where my husband speaks only Spanish and I speak only English to Kaylee. Sometimes having different languages directed towards different people can create some funny or confusing moments.
K: Are you going to your friend's house daddy?
Husband (In Spanish): Mande? (what?)
K: Oh, you are going there on Monday.
My husband I were simultaneously tickling K
K: Mas, Daddy! More Mommy! Mas, Daddy!
I watch my nephew (R) two days a week and the things a 2 1/2 year old and a 3 1/2 year old say to one another keeps me laughing all day long.
Kaylee and a little girl chatting at the park
K pointing to R: "That is my boy. His name is R and he is my cousin."
Girl: "He isn't your brother?"
K: "Well, not usually."
K looks up to see R with both hands swirling her kiwi slices in her snack bowl
K: "Those are mine."
R: "What?"
K: "The kiwi. That bowl is mine."
R: "Oh! I just dancing them."
K: "Oh, okay."
The kids watched the garbage truck and after it drove by..
K: "I want to see him again"
Me: "He already did our garbage now he is going to another neighborhood. We can see him next week."
Neither kid budged from their spot.
Me: "Let's go in."
R: "He come back. We need be patient"
Thursday, January 14, 2016
Tuesday, January 5, 2016
Four Months Of Orkambi
*This is a long version of my experience on Orkambi*
This is a post I keep starting, but can't seem to get myself to post. To be honest, my Orkambi journey started torturous at best. As much as I wanted to gripe and complain about the sickness that came with this new pill I knew I was unbelievably lucky to have the ability to even try this medicine. I know how many people with CF would love the opportunity to try this medication that was already in my hands and that none of them wanted to hear me complain. At the same time, when I felt as sick as I did, it was hard to feel grateful and lucky for a medicine that I wasn't sure could ever help me. And so I kept quiet and internally kept note of the changes, both good and bad, going on in my body. I am just finishing four months of Orkambi now and feel I have a clearer picture of what Orkambi means for me and my disease.
I started Orkambi feeling cautiously optimistic and well aware that the first month or so would be tough. However, I had no idea what the next several months had in store for me. My symptoms were not that unusual and many people that start the medicine experienced the same side effects. Some of the symptoms that came with this little pink pill were shortness of breath that was so extreme I had trouble walking across the room. In fact, there were times I felt like I was suffocating while sitting still. I had fevers, chills, aches, streaking of blood in my mucus, a cough that never stopped, but didn't feel productive, which meant I hardly slept. I was mentally prepared for these side effects, but I wasn't prepared for how long they would last. I was warned by fellow Orkambi users that the first week is the hardest and the worst of it was usually gone by a month. My symptoms seemed to get worse as time went on and as I passed the first and second month with no relief I started to lose hope that this medicine could work for me.
The physical aspect was tough, but the mentl aspect felt torturous. I dropped from 40% lung function (fev1) to 29% and despite the passing weeks, my numbers wouldn't budge. I worried endlessly as the weeks passed that I was harming myself rather than helping. I was so tight, coughing was not super productive and my exercise consisted of walking in slow motion around the house. I worried that my lack of movement and my tight chest meant that more mucus was pooling in my lungs and that I would end this Orkambi journey worse off than when I began. I felt like I was sicker than I had ever been in my life and I knew I was doing it to myself by taking this medicine. I kept waiting for a sign that things may improve, that my body was still okay, but nothing seemed any better.
And then one evening 2.5 months of worsening symptoms I broke down and cried. I had decided in the morning I would call the doctor and tell him that I just couldn't do it any longer. Physically, I was tired and mentally, I was terrified I was hurting myself and I don't have a lot of lung function to spare (at 29%). Orkambi didn't seem to be the right medication for me.
That night I went to bed and slept through the night for the first time in months. I didn't cough once! The next morning my shortness of breath had miraculously disappeared! It was a complete transformation. It was all I needed to stay on course and continue using Orkambi. My next clinic visit my lung function was 35% and although that was better than the previous 29%, it still wasn't to baseline. Regardless, I felt a huge sense of relief that at least my lungs were moving in the right direction.
During the fourth month I suddenly starting seeing all the changes in my body I had secretly hoped would happen. I started coughing up old putrid plugs from my lungs. Sinus plugs were coming out at an alarming (yet wonderful) rate. I could climb stairs and even run in the yard with my daughter. My mucus lightened in color and was much less copious compared to years past. My mucus came up easily and I started to feel stronger and more sure of my body. my morning cough has completely disappeared. I am starting to see my weight steadily climb despite starting at a healthy weight to begin with.
Clinically, I am not sure my lungs seem much different, but I feel like I just came off a round of IVs. I am in extreme awe of how well I feel without needing a hospital stay and weeks of IVs. I feel amazing and I have done nothing to work for it, no oral meds, no hospital stay, no prednisone, this hardly feels like real life. Orkambi may be considered a marginally beneficial medication and yet I feel stronger, healthier, and my lungs feel clearer. I may not gain lung function or see a huge change clinically, but I am taking something that is making my body work more like it should and that is amazing!
This is a post I keep starting, but can't seem to get myself to post. To be honest, my Orkambi journey started torturous at best. As much as I wanted to gripe and complain about the sickness that came with this new pill I knew I was unbelievably lucky to have the ability to even try this medicine. I know how many people with CF would love the opportunity to try this medication that was already in my hands and that none of them wanted to hear me complain. At the same time, when I felt as sick as I did, it was hard to feel grateful and lucky for a medicine that I wasn't sure could ever help me. And so I kept quiet and internally kept note of the changes, both good and bad, going on in my body. I am just finishing four months of Orkambi now and feel I have a clearer picture of what Orkambi means for me and my disease.
I started Orkambi feeling cautiously optimistic and well aware that the first month or so would be tough. However, I had no idea what the next several months had in store for me. My symptoms were not that unusual and many people that start the medicine experienced the same side effects. Some of the symptoms that came with this little pink pill were shortness of breath that was so extreme I had trouble walking across the room. In fact, there were times I felt like I was suffocating while sitting still. I had fevers, chills, aches, streaking of blood in my mucus, a cough that never stopped, but didn't feel productive, which meant I hardly slept. I was mentally prepared for these side effects, but I wasn't prepared for how long they would last. I was warned by fellow Orkambi users that the first week is the hardest and the worst of it was usually gone by a month. My symptoms seemed to get worse as time went on and as I passed the first and second month with no relief I started to lose hope that this medicine could work for me.
The physical aspect was tough, but the mentl aspect felt torturous. I dropped from 40% lung function (fev1) to 29% and despite the passing weeks, my numbers wouldn't budge. I worried endlessly as the weeks passed that I was harming myself rather than helping. I was so tight, coughing was not super productive and my exercise consisted of walking in slow motion around the house. I worried that my lack of movement and my tight chest meant that more mucus was pooling in my lungs and that I would end this Orkambi journey worse off than when I began. I felt like I was sicker than I had ever been in my life and I knew I was doing it to myself by taking this medicine. I kept waiting for a sign that things may improve, that my body was still okay, but nothing seemed any better.
And then one evening 2.5 months of worsening symptoms I broke down and cried. I had decided in the morning I would call the doctor and tell him that I just couldn't do it any longer. Physically, I was tired and mentally, I was terrified I was hurting myself and I don't have a lot of lung function to spare (at 29%). Orkambi didn't seem to be the right medication for me.
That night I went to bed and slept through the night for the first time in months. I didn't cough once! The next morning my shortness of breath had miraculously disappeared! It was a complete transformation. It was all I needed to stay on course and continue using Orkambi. My next clinic visit my lung function was 35% and although that was better than the previous 29%, it still wasn't to baseline. Regardless, I felt a huge sense of relief that at least my lungs were moving in the right direction.
During the fourth month I suddenly starting seeing all the changes in my body I had secretly hoped would happen. I started coughing up old putrid plugs from my lungs. Sinus plugs were coming out at an alarming (yet wonderful) rate. I could climb stairs and even run in the yard with my daughter. My mucus lightened in color and was much less copious compared to years past. My mucus came up easily and I started to feel stronger and more sure of my body. my morning cough has completely disappeared. I am starting to see my weight steadily climb despite starting at a healthy weight to begin with.
Clinically, I am not sure my lungs seem much different, but I feel like I just came off a round of IVs. I am in extreme awe of how well I feel without needing a hospital stay and weeks of IVs. I feel amazing and I have done nothing to work for it, no oral meds, no hospital stay, no prednisone, this hardly feels like real life. Orkambi may be considered a marginally beneficial medication and yet I feel stronger, healthier, and my lungs feel clearer. I may not gain lung function or see a huge change clinically, but I am taking something that is making my body work more like it should and that is amazing!
Saturday, December 12, 2015
3 and a half
Dear Kay,
You are 3 1/2 today! It feels very strange saying that because after you accepted the fact that your birthday meant you were no longer two (which you resisted for a few weeks) you decided to skip year 3 and go right to 4. I assumed it was a phase, but here we are 5.5 months later I still have to tell people you are 4...in June...or else face the wrath of a child who has been called the "wrong" age. It feels like I am going back in time saying you are only 3 1/2.
Your age is not the only little fib you tell (and believe with your whole heart) these days, you also are convinced that you are fluent in French (on top of English and Spanish). Now, to be fair you know more French than I do, but counting to ten and saying a few catch phrases hardly counts as fluent. The other day I overheard you telling your 2.5 year old cousin (who has never said a word of French in his life), "J, I haven't heard you speak French in a while can you say, bon bon?"
Speaking of language, your understanding of Spanish had exploded these last 6 months. Unfortunately, I can't take any credit for this development. Your father speaks to you only in Spanish. Actually he does it so well that the other day when he slipped and said something to you in English you shouted, "But dad, you don't know English!" I guess you never noticed that your dad and I only speak English to one another.
My favorite part of the day is when you first wake up. You shout from your bed every morning between 7 and 7:30, "Is it morning?" When I shout that it is in fact morning, you crawl into our bed to snuggle before we start our day. You have always been a snuggler and that has not changed. You love showing affection and I call you my little romantic because you come up with the most sappy lines to show your affection and I love it!
Like all kids you age you have an active imagination and love to tell stories. You like to talk about when you were a grown up and I was little you took care of me. You also love to talk about made up memories from when you were a "tiny baby". The other day you told your Nana that you had a pet squirrel when you were younger and you went into great detail about this supposed pet from what it ate to where it slept. You also apparently had a run in with an alligator when you were a baby which doesn't say much for my parenting skills.
I am always saying every age is my favorite, but I absolutely love the relationship you and I have developed and continue to develop as you get older. You feel like my partner in crime and I feel thankful every single day that I was lucky enough to be your mom.
Love,
Mom
You are 3 1/2 today! It feels very strange saying that because after you accepted the fact that your birthday meant you were no longer two (which you resisted for a few weeks) you decided to skip year 3 and go right to 4. I assumed it was a phase, but here we are 5.5 months later I still have to tell people you are 4...in June...or else face the wrath of a child who has been called the "wrong" age. It feels like I am going back in time saying you are only 3 1/2.
Your age is not the only little fib you tell (and believe with your whole heart) these days, you also are convinced that you are fluent in French (on top of English and Spanish). Now, to be fair you know more French than I do, but counting to ten and saying a few catch phrases hardly counts as fluent. The other day I overheard you telling your 2.5 year old cousin (who has never said a word of French in his life), "J, I haven't heard you speak French in a while can you say, bon bon?"
Speaking of language, your understanding of Spanish had exploded these last 6 months. Unfortunately, I can't take any credit for this development. Your father speaks to you only in Spanish. Actually he does it so well that the other day when he slipped and said something to you in English you shouted, "But dad, you don't know English!" I guess you never noticed that your dad and I only speak English to one another.
My favorite part of the day is when you first wake up. You shout from your bed every morning between 7 and 7:30, "Is it morning?" When I shout that it is in fact morning, you crawl into our bed to snuggle before we start our day. You have always been a snuggler and that has not changed. You love showing affection and I call you my little romantic because you come up with the most sappy lines to show your affection and I love it!
Like all kids you age you have an active imagination and love to tell stories. You like to talk about when you were a grown up and I was little you took care of me. You also love to talk about made up memories from when you were a "tiny baby". The other day you told your Nana that you had a pet squirrel when you were younger and you went into great detail about this supposed pet from what it ate to where it slept. You also apparently had a run in with an alligator when you were a baby which doesn't say much for my parenting skills.
I am always saying every age is my favorite, but I absolutely love the relationship you and I have developed and continue to develop as you get older. You feel like my partner in crime and I feel thankful every single day that I was lucky enough to be your mom.
Love,
Mom
Monday, October 26, 2015
Leaving Your Child for a Hospital Stay
Ask a CF patient how CF effects their life you will quickly realize that CF effects every single aspect of their lives, including their family. In Kaylee's short life of 3 years I have been in the hospital 3 times. I know many CFers leave their children much more often or for longer periods of time, but I thought I would share my experience of being hospitalized with a small child at home.
My first hospital stay as a mother was when Kaylee was around 1 1/2. This was my longest stay (seven days) and was the most soul crushing experience I have had as a mother. My husband worked a lot when she was younger and I had never been away from her so I was worried how she would adjust to a whole new routine and one that did not include her mother. I spent most of my stay worried about her, wondering how she was coping, and longing to be with her. She was too young to talk on the phone, visits were hard on her because hospitals are boring, and I had trouble feeling like I was connecting to her. The hardest aspect was that despite trying to simplify what was happening to explain it to her, it was beyond her scope of understanding. I remember thinking that a hospital stay could not get any worse than that particular stay and in most aspects I still agree with that thought.
This most recent hospital stay (8 days) was difficult on the whole family, of course. However, as Kaylee gets older and can understand and process better it is a little less traumatic for everyone involved. She is still too young to realize that most people do not have to go to the hospital and has no idea how serious Cystic Fibrosis is so those extra concerns and worry are both something I have to really tackle yet. She was able to visit everyday and had fun coloring, eating all the good hospital food, and watching too much TV. We spent most of the afternoon together and although saying goodbye was hard, we still got a lot of quality time together. Past hospital stays were hard because she got restless and bored so visits were uncomfortable for all of us. We wanted to be together, but the setting just didn't make sense for such a little kid.
As Kaylee has gotten older sleeping over at her Nana and Papa's house is seen as the ultimate weekend. She was able to sleepover with Nana and Papa a few times while I was inpatient which made the stay so much easier on her (and me). With her grandparents she doesn't feel like she is away from mommy who is in the hospital, but rather having the best sleepover ever. As she gets older I can see this being our saving grace again and again.
I am not going to pretend an 8 day hospital stay is easy on a toddler or her parents. It is hard! So hard! There were tears on all ends and when it was time for her to go home it felt traumatic for her (which was traumatic for me... mom guilt!!), but we were able to stay connected and find fun and laughs in the hospital too.
My first hospital stay as a mother was when Kaylee was around 1 1/2. This was my longest stay (seven days) and was the most soul crushing experience I have had as a mother. My husband worked a lot when she was younger and I had never been away from her so I was worried how she would adjust to a whole new routine and one that did not include her mother. I spent most of my stay worried about her, wondering how she was coping, and longing to be with her. She was too young to talk on the phone, visits were hard on her because hospitals are boring, and I had trouble feeling like I was connecting to her. The hardest aspect was that despite trying to simplify what was happening to explain it to her, it was beyond her scope of understanding. I remember thinking that a hospital stay could not get any worse than that particular stay and in most aspects I still agree with that thought.
This most recent hospital stay (8 days) was difficult on the whole family, of course. However, as Kaylee gets older and can understand and process better it is a little less traumatic for everyone involved. She is still too young to realize that most people do not have to go to the hospital and has no idea how serious Cystic Fibrosis is so those extra concerns and worry are both something I have to really tackle yet. She was able to visit everyday and had fun coloring, eating all the good hospital food, and watching too much TV. We spent most of the afternoon together and although saying goodbye was hard, we still got a lot of quality time together. Past hospital stays were hard because she got restless and bored so visits were uncomfortable for all of us. We wanted to be together, but the setting just didn't make sense for such a little kid.
As Kaylee has gotten older sleeping over at her Nana and Papa's house is seen as the ultimate weekend. She was able to sleepover with Nana and Papa a few times while I was inpatient which made the stay so much easier on her (and me). With her grandparents she doesn't feel like she is away from mommy who is in the hospital, but rather having the best sleepover ever. As she gets older I can see this being our saving grace again and again.
I am not going to pretend an 8 day hospital stay is easy on a toddler or her parents. It is hard! So hard! There were tears on all ends and when it was time for her to go home it felt traumatic for her (which was traumatic for me... mom guilt!!), but we were able to stay connected and find fun and laughs in the hospital too.
Friday, October 23, 2015
Hospital Schedule
I often have family and friends ask what I do in the hospital all day. People often don't realize how busy CFers are when they are in the hospital. Treatments come every 4 hours around the clock and can take 30-40 minutes to administer. Add strange medication schedules, early morning blood draws, staff coming in almost every hour, and we often go home feeling sleep deprived!
6:00am- My nurse brings my acid reducer which I take and promptly try to go back to sleep.
7:30am- breakfast arrives along with my vitamins and meds.
8:00am- treatments. This means if breakfast is late or I decide to asleep in I don't get breakfast until it is ice cold.
11:30am- lunch arrives.
12:00pm- treatments.
2:00pm- I try to hop on the exercise bike for about 30 minutes if I don't have anything else going on such as pfts, x-rays, etc.
4:00pm- treatments
6:00pm- dinner
8:00pm- treatments
9:00pm- After treatments I try to have a snack, take Orkambi relax in the dark. I don't usually bother sleeping yet because the nurse is back by 10 to change my IVs and give me my night meds.
10:00pm- IV bag change and night meds.
10:30pm- Finally time to sleep!
12:00am- Treatments...AGAIN!
4:00am- I am supposed to have another set of treatments, but I usually decline these because I want to get at least 5 hours of sleep.
6:00am- My nurse brings my acid reducer which I take and promptly try to go back to sleep.
7:30am- breakfast arrives along with my vitamins and meds.
8:00am- treatments. This means if breakfast is late or I decide to asleep in I don't get breakfast until it is ice cold.
11:30am- lunch arrives.
12:00pm- treatments.
2:00pm- I try to hop on the exercise bike for about 30 minutes if I don't have anything else going on such as pfts, x-rays, etc.
4:00pm- treatments
6:00pm- dinner
8:00pm- treatments
9:00pm- After treatments I try to have a snack, take Orkambi relax in the dark. I don't usually bother sleeping yet because the nurse is back by 10 to change my IVs and give me my night meds.
10:00pm- IV bag change and night meds.
10:30pm- Finally time to sleep!
12:00am- Treatments...AGAIN!
4:00am- I am supposed to have another set of treatments, but I usually decline these because I want to get at least 5 hours of sleep.
Saturday, September 19, 2015
Rain Showers and Orkambi
"Maybe we will see a rainbow" my 3 year old shouted with eyes wide at the thought.
My dad and I exchanged glances. While smirking I replied, "Maybe" not believing it one bit.
It hardly rains in the summer. We haven't seen rain in four months or so, but a recent drizzly day made its way into the end of summer leaving my daughter with the optimistic belief that she would see a rainbow. It was true the rain had stopped, but the sun was still hiding behind dense clouds and evening was quickly approaching. My daughter had a date with my father that evening and I was hoping the excitement from the date would be enough to make her forget the disappointment of a rainbow that would never be.
I started Orkambi today. The day I found out that Orkambi was approved, my application was accepted, and the pharmacy was preparing to ship my pills to me I was filled with a multitude of conflicting emotions. I am an optimist by nature, but a realist by life experience. My heart kept shouting, "This is a dream come true! Your body will be functioning more normally than it ever has before. This is what you have been waiting for" But my brain kept shouting just as loudly, "But the benefits are minimal and your lung function is already so low." My heart would rebuttal, "Improvement is not the point, stability is what matters. " The fight between my jubilant heart and my practical cautious mind roared on throughout the week
This morning I woke excited and anxious for the postal carrier. And once the meds were in my hand around 9am I suddenly felt nervous in a way I haven't felt in so long. This was the moment of truth. All the potential benefits and all the potential let downs were running through my mind. I wanted so badly to let my optimism take over my cautious mind, but I was equally concerned about being disappointed. I sat there for a long time before swallowing my first pill. It is okay to hope for the best, I kept telling myself. It is okay to be optimistic for once and believe that good things, no matter how small, are coming your way.
I could hear the giggles and high pitched voice of my little girl running up the front steps. I greeted both her and my dad at the door with a big smile. Before I could even ask how the date night went my daughter, hardly able to contain her excitement shouted, "We saw a rainbow, mommy! We really did!"
My dad and I exchanged glances. While smirking I replied, "Maybe" not believing it one bit.
It hardly rains in the summer. We haven't seen rain in four months or so, but a recent drizzly day made its way into the end of summer leaving my daughter with the optimistic belief that she would see a rainbow. It was true the rain had stopped, but the sun was still hiding behind dense clouds and evening was quickly approaching. My daughter had a date with my father that evening and I was hoping the excitement from the date would be enough to make her forget the disappointment of a rainbow that would never be.
I started Orkambi today. The day I found out that Orkambi was approved, my application was accepted, and the pharmacy was preparing to ship my pills to me I was filled with a multitude of conflicting emotions. I am an optimist by nature, but a realist by life experience. My heart kept shouting, "This is a dream come true! Your body will be functioning more normally than it ever has before. This is what you have been waiting for" But my brain kept shouting just as loudly, "But the benefits are minimal and your lung function is already so low." My heart would rebuttal, "Improvement is not the point, stability is what matters. " The fight between my jubilant heart and my practical cautious mind roared on throughout the week
This morning I woke excited and anxious for the postal carrier. And once the meds were in my hand around 9am I suddenly felt nervous in a way I haven't felt in so long. This was the moment of truth. All the potential benefits and all the potential let downs were running through my mind. I wanted so badly to let my optimism take over my cautious mind, but I was equally concerned about being disappointed. I sat there for a long time before swallowing my first pill. It is okay to hope for the best, I kept telling myself. It is okay to be optimistic for once and believe that good things, no matter how small, are coming your way.
I could hear the giggles and high pitched voice of my little girl running up the front steps. I greeted both her and my dad at the door with a big smile. Before I could even ask how the date night went my daughter, hardly able to contain her excitement shouted, "We saw a rainbow, mommy! We really did!"
Sunday, September 13, 2015
Forgetting Enzymes
CFers take enzymes every time food passes our lips. It is so engrained in our daily routine that we often take them without much thought. It is so routine that there are times we may wonder, "wait, did I take my enzymes already?" It happens to me more often now that I have a little one that distracts me during meal time, but let's be real, it happened often enough before kids. Recently, my dad found the perfect solution to this annoying problem at the local pharmacy.
His great find is a lid that goes on regular prescription bottles (the translucent orange kind) and keeps track of how much time has passed since the bottle was opened. So let's say you ate breakfast at 7am and you sit down for a snack at 10am, but you can't remember if you already took your enzymes. You can take a peak at the lid and if the bottle says 3 hours have passed since you opened it you know you better get swallowing. And if it says 1 minute, you are good (as long as you didn't accidentally place your napkin on top of your pile of enzymes by accident not that I have ever done this ehem).
The downside is they don't fit on the plastic Zenpep bottles, but if you have CF you probably have a few extra orange bottles on hand (or will once your next shipment of prescriptions arrives) that you can use. These were clearly from Rite Aid, but I assume most major pharmacies have the exact same product. Hopefully this will answer the age old CF question of, "Wait, did anyone see me take my enzymes?"
His great find is a lid that goes on regular prescription bottles (the translucent orange kind) and keeps track of how much time has passed since the bottle was opened. So let's say you ate breakfast at 7am and you sit down for a snack at 10am, but you can't remember if you already took your enzymes. You can take a peak at the lid and if the bottle says 3 hours have passed since you opened it you know you better get swallowing. And if it says 1 minute, you are good (as long as you didn't accidentally place your napkin on top of your pile of enzymes by accident not that I have ever done this ehem).
The downside is they don't fit on the plastic Zenpep bottles, but if you have CF you probably have a few extra orange bottles on hand (or will once your next shipment of prescriptions arrives) that you can use. These were clearly from Rite Aid, but I assume most major pharmacies have the exact same product. Hopefully this will answer the age old CF question of, "Wait, did anyone see me take my enzymes?"
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