Yesterday was a clinic day for Samuel. I'm not quite sure how it had happened, but his last clinic visit was several months ago...maybe 4 or 5? Don't fret, he's been seen at this HTS visits by his usual physician. But yesterday he saw another CF clinic team member, the nurse practitioner. Wait, let me back up.
Since Samuel was little, he's had trouble gaining weight. First sign something was up (if you don't count the time the doctor said "Your son has cystic fibrosis") was his inability to get back to his birth weight at the usual 2 week mark. He takes enzymes and those help but his daily caloric goal is 2,000+. Yes, that's more than I need. I'm not a betting gal, but if I were, I'd put money on this: He's never reached his goal in one day. Ever. In which case, it's pretty impressive he's doing so well maintaining his weight...what with all the running he's doing. every. single. day. Just ask his Papa E. Our vacation was filled with the phrase "Chase me!"
Kevin and I have always joked that we knew how concerned the nutritionist was with Samuel's weight gain (or lack thereof) based on what order they came in the room. If the doctor came in first, not a huge deal. If the RD (registered dietitian) came in first, we knew he didn't meet his goal. I'm pretty sure we've seen the RD before the MD since he was about 10 months old and yesterday was no different.
For those keeping track, our most favorite CF doctor, Dr. O, moved away and Samuel had to get a new one, Dr. R. Dr. R is great, but my oh my, Dr. O set the bar rather high. At our final visit with Dr. O in February, he was the first to mention a g-tube. Of course, at the time, this was something that we did not want for our son. We've still tossed the idea around but we aren't making appointments with surgeon or anything. The team still wants us to consider it, even though Samuel's situation is so variable. Technically, his growth is normal. His weight to height ratio is putting him between the 10th and 25th percentile. Totally normal for a typical child. Unfortunately, Samuel isn't quite typical - with CF and all. We understand this could be just what Samuel needs but have some more research to do to see if it's the best decision for our family.
I'd like to take this chance to say WE STILL BELIEVE. Well, ok, to shout it out.
Of course we still believe. We never gave up believing. And, thankfully, I know a God who can and who does every single day. He's in the miracle performing business. And, furthermore, it is my belief that until God chooses to do something fabulous through Samuel, it's my God-given responsibility and commitment to my son, to make sure he is (and we are) faithfully doing his treatments, taking his meds, and doing the absolute best we can to treat his disease. It is my belief that God has let this (CF) happen to Samuel and our family. It is, after all, something we all deal with, not just Samuel. It is also my belief that God gave someone, scientists...researchers...doctors, the knowledge and ability to come up with drugs and treatments to extend the lives of people with cystic fibrosis. In my opinion, it would be foolish to ignore those drugs and treatments, or even to ignore the diagnosis. Sounds crazy, right? I've heard of it happening.
Until then...
Showing posts with label thankful. Show all posts
Showing posts with label thankful. Show all posts
Wednesday, September 1, 2010
Monday, August 23, 2010
Lacking Inspiration
I've been lacking inspiration to blog recently. I bet you couldn't tell. :)
Actually, what probably happened was that I was so excited and looking forward to our family vacation that I didn't allow much else to occupy my spare time. In total "Elf" fashion, I've been looking forward to vacation so that first we would make sand angels, then build a giant sand castle, then relax on the beach towel for 1 hour, eat a half gallon of ice cream as fast as we could and top it all off with an evening swim. Now that it's over, it's back to reality. Back to running. Back to potty training (which took a fabulous turn for the better while we were away). And back to the grueling ways of the CF mom. The grueling ways are just means to stay up with his disease. Sometimes it seems like we struggle to just keep up, let alone try to make headway.
I love Samuel. Of course I do! Who wouldn't? I love Samuel with CF. (I don't care so much for CF by itself, but it's here and not going anywhere soon.) But all breathing treatments aside, I feel like menu planning and dietary needs are slowly taking over my life. Except it's not as slow as I'd like. If my "job" had a description it would probably be something like this:
It has been a sort of blessing in disguise as a dear friend is fighting a battle against cancer right now and has a challenge to meet some lofty caloric and protein goals on a daily basis. Like most of us, this is a bit foreign, so it's been really nice to share some tips and tricks I've learned trying to meet Samuel's needs. I'm happy to share and so glad all my silly cooking experimentation is not in vain.
Samuel has a clinic visit in a week. Obviously, to say his weight has been on my mind is quite possibly, the understatement of the year. From March to June (?) or July (?) his weight stayed the same. I'm not sure which month it is. They all run together sometimes. At any rate, his weight was stuck at 28 pounds. Not even an ounce gained (or lost!)...ThankYouJesus.
We will see what our next step in God's plan is next week. Of course, I will update at that time.
Actually, what probably happened was that I was so excited and looking forward to our family vacation that I didn't allow much else to occupy my spare time. In total "Elf" fashion, I've been looking forward to vacation so that first we would make sand angels, then build a giant sand castle, then relax on the beach towel for 1 hour, eat a half gallon of ice cream as fast as we could and top it all off with an evening swim. Now that it's over, it's back to reality. Back to running. Back to potty training (which took a fabulous turn for the better while we were away). And back to the grueling ways of the CF mom. The grueling ways are just means to stay up with his disease. Sometimes it seems like we struggle to just keep up, let alone try to make headway.
I love Samuel. Of course I do! Who wouldn't? I love Samuel with CF. (I don't care so much for CF by itself, but it's here and not going anywhere soon.) But all breathing treatments aside, I feel like menu planning and dietary needs are slowly taking over my life. Except it's not as slow as I'd like. If my "job" had a description it would probably be something like this:
- 50% - "normal" mom things like playing cars, cleaning up toys, hygiene
- 20% - breathing treatments, cleaning neb cups, refilling prescriptions
- 32% - obsessing about food. What would he like to eat? How is the best way to prepare it? Will it provide enough calories/fat/protein to meet his needs?
It has been a sort of blessing in disguise as a dear friend is fighting a battle against cancer right now and has a challenge to meet some lofty caloric and protein goals on a daily basis. Like most of us, this is a bit foreign, so it's been really nice to share some tips and tricks I've learned trying to meet Samuel's needs. I'm happy to share and so glad all my silly cooking experimentation is not in vain.
Samuel has a clinic visit in a week. Obviously, to say his weight has been on my mind is quite possibly, the understatement of the year. From March to June (?) or July (?) his weight stayed the same. I'm not sure which month it is. They all run together sometimes. At any rate, his weight was stuck at 28 pounds. Not even an ounce gained (or lost!)...ThankYouJesus.
We will see what our next step in God's plan is next week. Of course, I will update at that time.
Monday, June 28, 2010
Here we go again - And a BONUS rant!
First, I want to offer my condolences to the Jones family. Conner, seven years old with CF, went to his permanent home with Jesus a few days ago. Mere words escape me and seem so frivolous anyway. To say "Conner lost his fight" implies that he didn't fight hard enough or he didn't do enough. Even though Conner was only here for a short time, his life touched many. His spirit, determination and caring ways are an inspiration to many who have been here long enough to have learned the lesson long ago.
I can't imagine loosing my child to such a combination of cystic fibrosis and Prune Belly Syndrome, as Sarah, Conner's mother, has. Again, not even sure how to put my thoughts in words. It's not total sympathy because no doubt Conner is in a better place were he doesn't have to fight to breathe or even worry with having the strength to move. But our selfish, earthly ways can't help but want to keep our little ones with us as long as possible. I simply pray that God would continue to comfort the entire family through this time...that He will give them peace.
As they say on the Today show "On a much lighter note..."
We've started gearing up for the first TeamSamuel silent auction in the fall. Funds raised from the auction will go toward the Cystic Fibrosis Foundation. I'm hoping for some great donations and lots of eager bidders. :)
During lunch with my friend on Friday, Samuel let out a big ... cough. A big, fat, wet, productive cough. While I noticed, I didn't want to hear it. He's not supposed to cough yet. But he did. And he has been. By this evening, he's got a (clear) runny nose that is like a faucet, red, watery eye and a 101.3 fever. After a long nap this evening, he gained his appetite and got back to his normal, 2 year-old ways. Hopefully it's just a quick bug that he'll be able to fight off on his own. That would be ideal. But, as timing would have it, we have a hypertonic saline study visit on Tuesday where he will see his regular CF doctor. She will give us some direction as to how to treat this. And, not that I want him to be sick, but by Tuesday, if it's something to really worry about, it will be obvious. Right now, it's still a cold (as if that's not bad enough).
Last post I asked the question: When did it become OK for moms to judge other moms for the things they do or decisions they make? Either I'm oblivious to it, or just don't care, but it hit me a few weeks ago that some moms out there feel like they are constantly being judged by other moms. The particular situation my friend and I were discussing had to do with nursing in public. She had chosen to not try breastfeeding, preferring to formula feed her two children. Now, after the research I did, I chose to breastfeed (sorry if this is too much info, but I'm getting somewhere). Honestly, it was one of the best decisions I've made, but it was right for me. Other moms think other things are better for them. Good for them. I am not the wellness police and while I do not understand why a mom wouldn't even try it, I'm not going to think less of her or judge her for her decision. Maybe I think others think like me.
But then a funny thing happened: I started to notice it going on around me. I follow a popular mom blog on occasion and saw a picture she had posted of her 4 children, all under 4 (I think) at the Childrens Museum. Her children seemed clean, fed, dressed and having fun learning at the museum while spending time with their 1 mom. I mention the ration of children to mom because I have 1 of my own and keep one more most weekdays, ages 2 and 9 months. While I'm not ragged, it's a bit of a handful and it takes some planning, not to mention tons of patience, for a trip to the library. So, from my persepctive, you can imagine my awe that she would take 4 children, by herself, to a place where kids run and play and all WITHOUT a stroller. As I saw the picture, something like "SuperMom" crossed my mind (disclaimer: I don't think most mom bloggers are SuperMoms. But some have it together and I admire that. I wouldn't call someone I don't know personally, have never met, a SuperMom. The ONLY SuperMom I know is my very own mother. And you'd say she is SuperMom too, if you know her.) Back to the picture. Another one of her followers was the first to make a comment. Unfortunately her comment was something to the effect of "Please tell me that's not one of those awful kid leashes that only terrible moms use when they can't control their children." Maybe not exactly like that, but that's what I read. I thought, "Here is a mom of 4, taking her kids to a museum. They are having fun. They are under control. The leash is off. It looks like he's wearing a backpack. Give the mom a break." And that was just one instance. It's popping up everywhere and it's driving me nuts. To me, it's not OK to make a mom feel like her best efforts or her decisions are good enough for her children. Not sure about you, but I didn't get the manual from the hospital so I'm still trying to figure it all out. Sometimes I get it wrong (usually on a daily basis) but I learn from those mistakes and move on. You know, we all are learning. All that being said, why can't we just give each other a break every now and then. And if you see my son in one of those terrible backpack kiddie leashes that help keep curious kids from running away on the day I decide to brave the childrens museum with my one (possibly 2) child(ren), you can just smile and say "Looks like you guys are having fun today!" because we probably are.
I can't imagine loosing my child to such a combination of cystic fibrosis and Prune Belly Syndrome, as Sarah, Conner's mother, has. Again, not even sure how to put my thoughts in words. It's not total sympathy because no doubt Conner is in a better place were he doesn't have to fight to breathe or even worry with having the strength to move. But our selfish, earthly ways can't help but want to keep our little ones with us as long as possible. I simply pray that God would continue to comfort the entire family through this time...that He will give them peace.
As they say on the Today show "On a much lighter note..."
We've started gearing up for the first TeamSamuel silent auction in the fall. Funds raised from the auction will go toward the Cystic Fibrosis Foundation. I'm hoping for some great donations and lots of eager bidders. :)
During lunch with my friend on Friday, Samuel let out a big ... cough. A big, fat, wet, productive cough. While I noticed, I didn't want to hear it. He's not supposed to cough yet. But he did. And he has been. By this evening, he's got a (clear) runny nose that is like a faucet, red, watery eye and a 101.3 fever. After a long nap this evening, he gained his appetite and got back to his normal, 2 year-old ways. Hopefully it's just a quick bug that he'll be able to fight off on his own. That would be ideal. But, as timing would have it, we have a hypertonic saline study visit on Tuesday where he will see his regular CF doctor. She will give us some direction as to how to treat this. And, not that I want him to be sick, but by Tuesday, if it's something to really worry about, it will be obvious. Right now, it's still a cold (as if that's not bad enough).
Last post I asked the question: When did it become OK for moms to judge other moms for the things they do or decisions they make? Either I'm oblivious to it, or just don't care, but it hit me a few weeks ago that some moms out there feel like they are constantly being judged by other moms. The particular situation my friend and I were discussing had to do with nursing in public. She had chosen to not try breastfeeding, preferring to formula feed her two children. Now, after the research I did, I chose to breastfeed (sorry if this is too much info, but I'm getting somewhere). Honestly, it was one of the best decisions I've made, but it was right for me. Other moms think other things are better for them. Good for them. I am not the wellness police and while I do not understand why a mom wouldn't even try it, I'm not going to think less of her or judge her for her decision. Maybe I think others think like me.
But then a funny thing happened: I started to notice it going on around me. I follow a popular mom blog on occasion and saw a picture she had posted of her 4 children, all under 4 (I think) at the Childrens Museum. Her children seemed clean, fed, dressed and having fun learning at the museum while spending time with their 1 mom. I mention the ration of children to mom because I have 1 of my own and keep one more most weekdays, ages 2 and 9 months. While I'm not ragged, it's a bit of a handful and it takes some planning, not to mention tons of patience, for a trip to the library. So, from my persepctive, you can imagine my awe that she would take 4 children, by herself, to a place where kids run and play and all WITHOUT a stroller. As I saw the picture, something like "SuperMom" crossed my mind (disclaimer: I don't think most mom bloggers are SuperMoms. But some have it together and I admire that. I wouldn't call someone I don't know personally, have never met, a SuperMom. The ONLY SuperMom I know is my very own mother. And you'd say she is SuperMom too, if you know her.) Back to the picture. Another one of her followers was the first to make a comment. Unfortunately her comment was something to the effect of "Please tell me that's not one of those awful kid leashes that only terrible moms use when they can't control their children." Maybe not exactly like that, but that's what I read. I thought, "Here is a mom of 4, taking her kids to a museum. They are having fun. They are under control. The leash is off. It looks like he's wearing a backpack. Give the mom a break." And that was just one instance. It's popping up everywhere and it's driving me nuts. To me, it's not OK to make a mom feel like her best efforts or her decisions are good enough for her children. Not sure about you, but I didn't get the manual from the hospital so I'm still trying to figure it all out. Sometimes I get it wrong (usually on a daily basis) but I learn from those mistakes and move on. You know, we all are learning. All that being said, why can't we just give each other a break every now and then. And if you see my son in one of those terrible backpack kiddie leashes that help keep curious kids from running away on the day I decide to brave the childrens museum with my one (possibly 2) child(ren), you can just smile and say "Looks like you guys are having fun today!" because we probably are.
Friday, April 30, 2010
Mommee's Letter to Samuel
Dear Samuel,
You are in the terrific twos! You are such an awesome little boy. So smart and learning more every day. You say the funniest things and are trying to learn knock-knock jokes but don't quite understand. "Knock knock." "Who's there?" "Daddy's home!" You are a kind and loving little boy with a love for others. You are determined yet keep a sweet spirit.
At this point in your life you have a deep interest in trains, big trucks, Hot Wheels cars and bounce houses. I'm still cool and can remove pain with just a simple kiss. You still have your favorite blanket and take a binky. It's OK. I know it will be gone before you go to kindergarten.
You are starting to notice that you are the only one in the house who gets hooked to machines twice a day and have to take pills before you eat but I don't think you care yet. Every once in a while you say "Mommy's turn!" and put the mask to my face, in which I oblige you for a few minutes because I want you to feel like this is normal. Because it is normal. For you. Until we find a cure, you will do this at least twice a day for the rest of your life. Until that day, you'll take a handful of pills several times a day and always look for the highest calorie item on the menu.
One thing you've been saying lately that I wish I could permanently remove from your vocabulary is "I can't do it." Don't ever say you can't do it. Say "I need help." There will be people who mean well but will quickly tell you you can't do something. Don't listen to them. You can do, and will do, whatever you want to (kinda like you do now because you are two!). Whenever that day comes, and it will, please remember this verse: For I can do everything through Christ, who gives me strength (Philippians 4:13).
I love you so very much. You brighten each day and renew my hope for the future. You are such a refreshing face for those around you. I pray for nothing but the best for you every day and will fight for it with everything I have.
You are such a precious gift from God and you always will be.
With all the love in my heart,
Mommy
You are in the terrific twos! You are such an awesome little boy. So smart and learning more every day. You say the funniest things and are trying to learn knock-knock jokes but don't quite understand. "Knock knock." "Who's there?" "Daddy's home!" You are a kind and loving little boy with a love for others. You are determined yet keep a sweet spirit.
At this point in your life you have a deep interest in trains, big trucks, Hot Wheels cars and bounce houses. I'm still cool and can remove pain with just a simple kiss. You still have your favorite blanket and take a binky. It's OK. I know it will be gone before you go to kindergarten.
You are starting to notice that you are the only one in the house who gets hooked to machines twice a day and have to take pills before you eat but I don't think you care yet. Every once in a while you say "Mommy's turn!" and put the mask to my face, in which I oblige you for a few minutes because I want you to feel like this is normal. Because it is normal. For you. Until we find a cure, you will do this at least twice a day for the rest of your life. Until that day, you'll take a handful of pills several times a day and always look for the highest calorie item on the menu.
One thing you've been saying lately that I wish I could permanently remove from your vocabulary is "I can't do it." Don't ever say you can't do it. Say "I need help." There will be people who mean well but will quickly tell you you can't do something. Don't listen to them. You can do, and will do, whatever you want to (kinda like you do now because you are two!). Whenever that day comes, and it will, please remember this verse: For I can do everything through Christ, who gives me strength (Philippians 4:13).
I love you so very much. You brighten each day and renew my hope for the future. You are such a refreshing face for those around you. I pray for nothing but the best for you every day and will fight for it with everything I have.
You are such a precious gift from God and you always will be.
With all the love in my heart,
Mommy
Monday, August 17, 2009
When it really comes down to it
...we are so blessed. I've been thinking lately about what a miracle Samuel is. He is truly a gift from God. There is no other way around it, he's a miracle. It's just another benefit that he has CF.
A benefit? What, you say? Surely, Mrs. Samuel's Mommy, you can mean that. Well, I do. See, we have the opportunity to teach others about all kinds of things like, faith and trust, being obedient, and mostly, being thankful for what we have. On Samuel's last clinic visit, I was out of town. But every time we go, I'm reminded of how fortunate we are. We usually have to talk about poop and get new instructions on how to help Samuel get those cherished thigh rolls. We might get a new prescription for a new drug Samuel hasn't been on before or information about a hypertonic saline study.
Whatever it is, it can sometimes be overwhelming.
BUT, when we leave, I ALWAYS see another little boy or girl at Phoenix Children's Hospital who doesn't get to go home that day. Sometimes they have a feeding tube and are in a wheelchair. Sometimes they've endured chemo and have lost every strand of hair. It always touches my heart because on THAT day, I get to take my baby back home. We are only there for a visit that day. What a blessing.
Thank you, God, for trusting Kevin and me with this opportunity to be a light for others who don't know you. While admitting we are far from perfect, help us to be a good example. Thank you for this little boy you have given us because he truly is a miracle and a gift from you. Samuel is yours. And thanks for letting me hold him for just a little while.
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