"Tell his Mama to back off on the food. He's getting chunky." Yes, those were the words spoken by our pediatrician yesterday. C brought Josiah for his 2nd year well-check up. He weighed in at 28 pounds, 7 ounces. He's 34.5 inches tall. The MD admitted that Josiah has defied the profile of Down syndrome. He is neither underweight or under height. He is a thriving little boy.
In the beginning, there was a little boy who struggled to gain an ounce. In the beginning, there was a little boy who ate but didn't gain. In those days, a breastfeeding mother wondered, and prayed, when the weight would follow. During it all was K, a stranger-become-friend - someone I have never met. After every weight loss, every 'failure to thrive' suggestion, every 'supplement breastfeeding' recommendation - my go-to person. She is the reason I continued to breastfeed (until nearly age 2). I couldn't have gotten through those early days without her.
It only made sense that I called her yesterday. We chatted for some time. This time, we enjoyed the memories of what once was. We revel in what has come to pass. We remain amazed by this little man with an extra chromosome.
Now, all these months later, I chuckle at the description of Josiah being 'chunky.' This fact had not eluded me. I have been referring to his Buddha belly for months. How funny those words struck me yesterday.
Yes, Josiah has a little belly. I know when he starts walking, he'll trim down. In the meanwhile, we continue as always.
Life is good for Josiah....all 28.7 lbs of him.
Life is perfect here :)
Welcome. I was inspired to write this blog while pregnant with my son, Josiah. At 18 weeks gestation, Josiah was diagnosed with Down Syndrome. He had open heart surgery at 3 months and has had RSV twice. He is now 21 months old. He and his two older brothers amaze us everyday. Josiah was not a mistake, nor is he a regret. He is a miracle and the light of our lives. We share with you this beautiful life we have been blessed with.
Showing posts with label failure to thrive. Show all posts
Showing posts with label failure to thrive. Show all posts
Saturday, November 9, 2013
Did You Just Call Him Chunky?
Labels:
chunky,
down syndrome,
DS,
failure to thrive,
gain,
MD,
pediatrician,
T21,
Trisomy 21,
weight
Saturday, November 2, 2013
31 for 21 Challenge: Day Twenty Five. Failure to Thrive
A repost from 9/25/12:
Josiah was born weighing a healthy 7 lbs - ironically, he weighed more than either of his brothers at birth. However, it didn't take long to see that he simply wasn't gaining weight as readily as his peers. For those of you who have read the blog from the beginning, you know this has been a sensitive issue for me (given that Josiah was/is a breastfed baby). We have persevered. Josiah has done the same. His providers have been patient (I was never willing to stop breastfeeding, only willing to supplement).
'Failure to Thrive' has always been that phrase we didn't want to hear. We didn't want Josiah diagnosed with "failure to thrive." Though it's just a concept, I guess the name sounds so horrific to Carl and I. Despite providers not using it, it still remained. It was the (usually) unspoken truth. I say usually, because hidden on a medical summary somewhere are the words 'history of failure to thrive.' Carl and I have never considered Josiah as failing to thrive. So, I set out to check definitions.
Johns Hopkins refers to failure to thrive in this way: "Children are diagnosed with failure to thrive when their weight or rate of weight gain is significantly below that of other children of similar age and gender. Infants or children that fail to thrive seem to be dramatically smaller or shorter than other children the same age." It goes on to say that failure to thrive can be the result of physical problems (such as Down Syndrome) or environmental problems (such as abuse/neglect).
Ok, fair. I can agree that Josiah does not match the weight of other children his age. I guess it's the phrase that is despised. It feels like it implies something sinister. Perhaps, in some cases it is caused by something sinister.
I've never brought myself to write about this as it's so personal for us. However, yesterday gave me good cause to mention it.
Josiah came down with a fever on Sunday. 101.3. It was late in the afternoon. He was crying non-stop, difficult to console. I finally gave him a small dose of Tylenol and called the pediatrician's office. An RN was on the phone within a few minutes. We agreed, Josiah could wait until morning to be seen.
I knew the pediatrician's office opened at 8:30, so I was up, showered, and dressed by 8. I was watching the clock with the intention of calling them at 8:35. Well, as usual, they beat me to the punch. At 8:15, our phone rang. Sure enough! It was the pediatrician's office calling to see how Josiah was doing. I explained. He fussed off and on during the night. His fever remained when he awoke at 4am. We were given a 9:45am appointment.
At 9am, we were out the door. The big boys were in school allowing Carl & I to take Josiah in alone. Once inside the room, they asked what he currently weighs. Well, you know me - I stopped weighing him at home because I was becoming a bit obsessive about the weight issues lol. So, I gently said "Can we weigh him here?" Minutes later, Josiah was undressed and laying on the scale. I knew that he weighed 15 lbs 3oz on Aug 16th. I watched the scale teeter - I was simply waiting for the end result. OMG! 17lbs 2oz. He did it! He gained 2 lbs in 5 weeks! I almost started dancing in the hallway.
They examined Josiah. Luckily, nothing serious. No ear infections. No respiratory issues. It boils down to a cold/viral thing. Thank goodness! As we were leaving, we stopped in the hallway. The MD passes by smiling. He tells the nurse, "my two failure to thrive kids are both thriving."
"My two failure to thrive kids are both thriving."
I'll take it!
Josiah was born weighing a healthy 7 lbs - ironically, he weighed more than either of his brothers at birth. However, it didn't take long to see that he simply wasn't gaining weight as readily as his peers. For those of you who have read the blog from the beginning, you know this has been a sensitive issue for me (given that Josiah was/is a breastfed baby). We have persevered. Josiah has done the same. His providers have been patient (I was never willing to stop breastfeeding, only willing to supplement).
'Failure to Thrive' has always been that phrase we didn't want to hear. We didn't want Josiah diagnosed with "failure to thrive." Though it's just a concept, I guess the name sounds so horrific to Carl and I. Despite providers not using it, it still remained. It was the (usually) unspoken truth. I say usually, because hidden on a medical summary somewhere are the words 'history of failure to thrive.' Carl and I have never considered Josiah as failing to thrive. So, I set out to check definitions.
Johns Hopkins refers to failure to thrive in this way: "Children are diagnosed with failure to thrive when their weight or rate of weight gain is significantly below that of other children of similar age and gender. Infants or children that fail to thrive seem to be dramatically smaller or shorter than other children the same age." It goes on to say that failure to thrive can be the result of physical problems (such as Down Syndrome) or environmental problems (such as abuse/neglect).
Ok, fair. I can agree that Josiah does not match the weight of other children his age. I guess it's the phrase that is despised. It feels like it implies something sinister. Perhaps, in some cases it is caused by something sinister.
I've never brought myself to write about this as it's so personal for us. However, yesterday gave me good cause to mention it.
Josiah came down with a fever on Sunday. 101.3. It was late in the afternoon. He was crying non-stop, difficult to console. I finally gave him a small dose of Tylenol and called the pediatrician's office. An RN was on the phone within a few minutes. We agreed, Josiah could wait until morning to be seen.
I knew the pediatrician's office opened at 8:30, so I was up, showered, and dressed by 8. I was watching the clock with the intention of calling them at 8:35. Well, as usual, they beat me to the punch. At 8:15, our phone rang. Sure enough! It was the pediatrician's office calling to see how Josiah was doing. I explained. He fussed off and on during the night. His fever remained when he awoke at 4am. We were given a 9:45am appointment.
At 9am, we were out the door. The big boys were in school allowing Carl & I to take Josiah in alone. Once inside the room, they asked what he currently weighs. Well, you know me - I stopped weighing him at home because I was becoming a bit obsessive about the weight issues lol. So, I gently said "Can we weigh him here?" Minutes later, Josiah was undressed and laying on the scale. I knew that he weighed 15 lbs 3oz on Aug 16th. I watched the scale teeter - I was simply waiting for the end result. OMG! 17lbs 2oz. He did it! He gained 2 lbs in 5 weeks! I almost started dancing in the hallway.
They examined Josiah. Luckily, nothing serious. No ear infections. No respiratory issues. It boils down to a cold/viral thing. Thank goodness! As we were leaving, we stopped in the hallway. The MD passes by smiling. He tells the nurse, "my two failure to thrive kids are both thriving."
"My two failure to thrive kids are both thriving."
I'll take it!
Labels:
31 for 21,
challenge,
down syndrome,
DS,
failure to thrive,
T21,
Trisomy 21
Saturday, October 5, 2013
31 for 21 challenge: Day Five. The End of an Era
The choice to breastfeed Josiah was an easy one. It had been unsuccessful with the first, but a perfect experience with the second. I saw no reason it couldn't be the same with Josiah. I read all the negative reviews about breastfeeding a child with Down syndrome. "It's rarely successful because of the low muscle tone," "...because of the common failure to thrive, these babies commonly need additional supplementation," and so on. By all accounts, I had no reason to believe I should try.
Anyone that knows me, however, knows that I will stand up for what I believe in. I believed it was right for me, and my child. So, there the dream began. While still pregnant, I made my intentions known. I was going to do the impossible (or at least very difficult): I was planning on breastfeeding my baby with Down syndrome.
I knew right away that Josiah had low muscle tone. Although he understood what to do, and demonstrated some interest, sucking was not easy for him. It was obvious. He worked hard for every sip of milk he took. It was time consuming, exhausting, and tested every ounce of patience I had.
Josiah breastfed exclusively, for about five months. He weighed 9 pounds at five months. Our first weighed 15 lbs at the same age. Our second, weighed 13 lbs. On 3/12/12, I wrote the following in my blog:
"We took Josiah to the cardiologist today for his first office follow-up appointment, since his surgery. His EKG was great! Then, they weighed him. He weighed in at 9lbs 1.3oz. At best, given that each office has it's own scale, he neither gained nor lost weight. At worst, he lost 2oz since last Friday (at the pediatrician's office). I cannot begin to describe the feeling of complete exasperation, frustration, and despair.
Perhaps it seems like a small thing; perhaps it is. All I know is this: Josiah weighed 7lbs on 10/12/2011. Today, 3/2/12, he weighed 9lbs 1oz. He will be five months old, in ten days. At J1's four-month check up, he weighed 15lbs. J2, at the same check up, weighed 13lbs. I know the DS plays a role in the slow weight gain, but this isn't right.
We (the professionals and family alike) believed that the heart problems were contributing to his slow weight gain. That excuse can no longer be used. Today's appointment confirmed that Josiah's heart is perfect (a wonderful piece of news that I cannot negate). Is it the Down Syndrome? Is it a feeding issue? Is he not getting enough calories? Does he simply need more calories than an average child? Should we start feeding him cereal? UGH! The questions race through my tired mind.
The surgeon was very pleased with the outcome of Josiah's surgery. Josiah's heart "sounds perfect." His color is good. "He looks like a different kid." "He looks more mature in the way he's moving around." However, "I expected him to come in here having gained a lot of weight so this is disappointing." (Yeah, tell me about it!)
Up until now, Josiah has been exclusively breastfed. He doesn't like the bottle; he won't drink from a bottle. Since surgery, he's been eating every 2-3 hours. It seems impossible to me that the child has gained no weight but numbers do not lie. I don't know what to do....that's the feeling. I hate that feeling. I'm tired and feel I has so little left to give....
We made our way out of the cardiologists office. I immediately walked down the hall to the pediatrician's office. I talked to our favorite nurse M. I voiced my frustration. I asked if we should start Josiah on cereal. I assured her we were doing everything we could to properly nourish our son. She already knows that we are. She said she'd call me later.
We did a few errands, picked up Jesse from school, and made our way home. I was exhausted. I left a message for our EI worker K. I know I'll hear from her as soon as she's available. This afternoon I fed Josiah...off and on....like usual. I went to the store for groceries and bought a different type of bottle - maybe Josiah will drink from this one. It's worth a try.
I talked to M from the pedi's office. The MD said we can start Josiah on cereal. I needed more than that. I didn't know what I needed, but that wasn't enough. I guess I wanted an instant fix.... I was so emotionally spent, my mind couldn't form concrete thoughts by which to gain more information. I ended the call for lack of knowing what else to say. Carl was very supportive of my frustration level. He called the MD's office back again and spoke with our pediatrician. The pedi is sympathetic to the situation and understands the frustration level. He suggests the OT (as the cardiologist did), a nutritionist (specifically with the DS clinic), formula if possible, cereal, the new bottle, and high-calorie formula if we request such. We'll see the pediatrician next Thursday for another weight check.
I called the lactation specialist KF and heard back from her promptly. We chatted for some time. It's nice to have someone who knows the frustration of breastfeeding a baby who doesn't gain weight. She offered some great suggestions. One by one, I'll try them all.
I talked to K for quite some time after. She is another fantastic support. K will put in a referral for OT early next week. It will be, specifically, for feeding. I've entrusted that task to her. We'll see K on Monday and will discuss the details further.
Tomorrow, I'll email A from the DS clinic. I'll explain what's going on with Josiah. I'll ask her what I need to do to initiate a consult with one of their nutritionists. I'll probably hear back from her on Monday.
It's the weekend now....two days, at home, with my wonderful family. I'm going to try to relax a little. I'll attempt some of the new suggestions given to me. Hopefully something will work. I'm going to try to not let it become all-consuming (although it already feels that way sometimes).
In the end, everything will work out. Even the cardiologist said "this is just another little hurdle we have to climb over." Everything will work out.
Climbing up the down staircase isn't always easy....but it's worth every single step <3"
And so it continued... I continued to breastfeed. Ultimately, we added cereal and began supplementing (minimally) with formula. Little by little, Josiah started gaining weight. The peanut that once fell 'below the line' on the DS growth chart, now charts on the 90th percentile. On the 'normal' growth chart, he didn't even plot on the chart, now charts at around the 50th percentile.
I have to give credit to an unknown friend and support. By that, I mean a person whom I have never met. She is my friend KF. She is a lactation specialist and has been an unwavering support during every frustrating moment. She returned every call, called me consistently, researched, and supported my every attempt to make it all work. Without her, I am convinced that my breastfeeding quest with Josiah would have failed.
Instead, Josiah is turning two in 8 days. He has breastfed this entire time. I worried about having to wean him, but HE made all the choices. In the early part of summer, he decreased his nursing to once a day (first thing in the morning). I could see the end coming near. In August, he had the croup & we enjoyed what I call 'the last hoorah.' For four days, while sick, he breastfed 4-5 times per day. I kept asking him if this was his last hoorah. Once well, he went back to once per day. If he was testing me, I proved that he would get anything he needed. If it was just for comfort, he got that too.
Regardless, yesterday he woke up and decided he was all set. He didn't nurse. He had no interest. He's growing up and I know it. I didn't push and told him it was ok to be a big boy now. And so it was. We went the day without breastfeeding. Today, like yesterday, he woke with no interest in breastfeeding. Day two and he's done it all himself.
Though I miss that certain bonding time, I have been fully prepared to see it end. I will forever remember, and enjoy, the last hoorah that Josiah gave to me in August. He knew I would miss it. He, too, knew he was letting go. And so it is. We have reached the end of an era. He's almost two, almost 27 pounds, and has said good-bye to breastfeeding.
“Never give up on what you really want to do. The person with big dreams is more powerful
Anyone that knows me, however, knows that I will stand up for what I believe in. I believed it was right for me, and my child. So, there the dream began. While still pregnant, I made my intentions known. I was going to do the impossible (or at least very difficult): I was planning on breastfeeding my baby with Down syndrome.
I knew right away that Josiah had low muscle tone. Although he understood what to do, and demonstrated some interest, sucking was not easy for him. It was obvious. He worked hard for every sip of milk he took. It was time consuming, exhausting, and tested every ounce of patience I had.
Josiah breastfed exclusively, for about five months. He weighed 9 pounds at five months. Our first weighed 15 lbs at the same age. Our second, weighed 13 lbs. On 3/12/12, I wrote the following in my blog:
"We took Josiah to the cardiologist today for his first office follow-up appointment, since his surgery. His EKG was great! Then, they weighed him. He weighed in at 9lbs 1.3oz. At best, given that each office has it's own scale, he neither gained nor lost weight. At worst, he lost 2oz since last Friday (at the pediatrician's office). I cannot begin to describe the feeling of complete exasperation, frustration, and despair.
Perhaps it seems like a small thing; perhaps it is. All I know is this: Josiah weighed 7lbs on 10/12/2011. Today, 3/2/12, he weighed 9lbs 1oz. He will be five months old, in ten days. At J1's four-month check up, he weighed 15lbs. J2, at the same check up, weighed 13lbs. I know the DS plays a role in the slow weight gain, but this isn't right.
We (the professionals and family alike) believed that the heart problems were contributing to his slow weight gain. That excuse can no longer be used. Today's appointment confirmed that Josiah's heart is perfect (a wonderful piece of news that I cannot negate). Is it the Down Syndrome? Is it a feeding issue? Is he not getting enough calories? Does he simply need more calories than an average child? Should we start feeding him cereal? UGH! The questions race through my tired mind.
The surgeon was very pleased with the outcome of Josiah's surgery. Josiah's heart "sounds perfect." His color is good. "He looks like a different kid." "He looks more mature in the way he's moving around." However, "I expected him to come in here having gained a lot of weight so this is disappointing." (Yeah, tell me about it!)
Up until now, Josiah has been exclusively breastfed. He doesn't like the bottle; he won't drink from a bottle. Since surgery, he's been eating every 2-3 hours. It seems impossible to me that the child has gained no weight but numbers do not lie. I don't know what to do....that's the feeling. I hate that feeling. I'm tired and feel I has so little left to give....
We made our way out of the cardiologists office. I immediately walked down the hall to the pediatrician's office. I talked to our favorite nurse M. I voiced my frustration. I asked if we should start Josiah on cereal. I assured her we were doing everything we could to properly nourish our son. She already knows that we are. She said she'd call me later.
We did a few errands, picked up Jesse from school, and made our way home. I was exhausted. I left a message for our EI worker K. I know I'll hear from her as soon as she's available. This afternoon I fed Josiah...off and on....like usual. I went to the store for groceries and bought a different type of bottle - maybe Josiah will drink from this one. It's worth a try.
I talked to M from the pedi's office. The MD said we can start Josiah on cereal. I needed more than that. I didn't know what I needed, but that wasn't enough. I guess I wanted an instant fix.... I was so emotionally spent, my mind couldn't form concrete thoughts by which to gain more information. I ended the call for lack of knowing what else to say. Carl was very supportive of my frustration level. He called the MD's office back again and spoke with our pediatrician. The pedi is sympathetic to the situation and understands the frustration level. He suggests the OT (as the cardiologist did), a nutritionist (specifically with the DS clinic), formula if possible, cereal, the new bottle, and high-calorie formula if we request such. We'll see the pediatrician next Thursday for another weight check.
I called the lactation specialist KF and heard back from her promptly. We chatted for some time. It's nice to have someone who knows the frustration of breastfeeding a baby who doesn't gain weight. She offered some great suggestions. One by one, I'll try them all.
I talked to K for quite some time after. She is another fantastic support. K will put in a referral for OT early next week. It will be, specifically, for feeding. I've entrusted that task to her. We'll see K on Monday and will discuss the details further.
Tomorrow, I'll email A from the DS clinic. I'll explain what's going on with Josiah. I'll ask her what I need to do to initiate a consult with one of their nutritionists. I'll probably hear back from her on Monday.
It's the weekend now....two days, at home, with my wonderful family. I'm going to try to relax a little. I'll attempt some of the new suggestions given to me. Hopefully something will work. I'm going to try to not let it become all-consuming (although it already feels that way sometimes).
In the end, everything will work out. Even the cardiologist said "this is just another little hurdle we have to climb over." Everything will work out.
Climbing up the down staircase isn't always easy....but it's worth every single step <3"
And so it continued... I continued to breastfeed. Ultimately, we added cereal and began supplementing (minimally) with formula. Little by little, Josiah started gaining weight. The peanut that once fell 'below the line' on the DS growth chart, now charts on the 90th percentile. On the 'normal' growth chart, he didn't even plot on the chart, now charts at around the 50th percentile.
I have to give credit to an unknown friend and support. By that, I mean a person whom I have never met. She is my friend KF. She is a lactation specialist and has been an unwavering support during every frustrating moment. She returned every call, called me consistently, researched, and supported my every attempt to make it all work. Without her, I am convinced that my breastfeeding quest with Josiah would have failed.
Instead, Josiah is turning two in 8 days. He has breastfed this entire time. I worried about having to wean him, but HE made all the choices. In the early part of summer, he decreased his nursing to once a day (first thing in the morning). I could see the end coming near. In August, he had the croup & we enjoyed what I call 'the last hoorah.' For four days, while sick, he breastfed 4-5 times per day. I kept asking him if this was his last hoorah. Once well, he went back to once per day. If he was testing me, I proved that he would get anything he needed. If it was just for comfort, he got that too.
Regardless, yesterday he woke up and decided he was all set. He didn't nurse. He had no interest. He's growing up and I know it. I didn't push and told him it was ok to be a big boy now. And so it was. We went the day without breastfeeding. Today, like yesterday, he woke with no interest in breastfeeding. Day two and he's done it all himself.
Though I miss that certain bonding time, I have been fully prepared to see it end. I will forever remember, and enjoy, the last hoorah that Josiah gave to me in August. He knew I would miss it. He, too, knew he was letting go. And so it is. We have reached the end of an era. He's almost two, almost 27 pounds, and has said good-bye to breastfeeding.
“Never give up on what you really want to do. The person with big dreams is more powerful
than the one with all the facts.” ~ unknown author
Labels:
31 for 21,
breastfeeding,
challenge,
down syndrome,
DS,
failure to thrive,
growth,
growth chart,
lactation,
low muscle tone,
supplement,
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T21,
Trisomy 21,
weight
Tuesday, September 25, 2012
Failure to Thrive; the Despised Phrase
Josiah was born weighing a healthy 7 lbs - ironically, he weighed more than either of his brothers at birth. However, it didn't take long to see that he simply wasn't gaining weight as readily as his peers. For those of you who have read the blog from the beginning, you know this has been a sensitive issue for me (given that Josiah was/is a breastfed baby). We have persevered. Josiah has done the same. His providers have been patient (I was never willing to stop breastfeeding, only willing to supplement).
'Failure to Thrive' has always been that phrase we didn't want to hear. We didn't want Josiah diagnosed with "failure to thrive." Though it's just a concept, I guess the name sounds so horrific to Carl and I. Despite providers not using it, it still remained. It was the (usually) unspoken truth. I say usually, because hidden on a medical summary somewhere are the words 'history of failure to thrive.' Carl and I have never considered Josiah as failing to thrive. So, I set out to check definitions.
Johns Hopkins refers to failure to thrive in this way: "Children are diagnosed with failure to thrive when their weight or rate of weight gain is significantly below that of other children of similar age and gender. Infants or children that fail to thrive seem to be dramatically smaller or shorter than other children the same age." It goes on to say that failure to thrive can be the result of physical problems (such as Down Syndrome) or environmental problems (such as abuse/neglect).
Ok, fair. I can agree that Josiah does not match the weight of other children his age. I guess it's the phrase that is despised. It feels like it implies something sinister. Perhaps, in some cases it is caused by something sinister.
I've never brought myself to write about this as it's so personal for us. However, yesterday gave me good cause to mention it.
Josiah came down with a fever on Sunday. 101.3. It was late in the afternoon. He was crying non-stop, difficult to console. I finally gave him a small dose of Tylenol and called the pediatrician's office. An RN was on the phone within a few minutes. We agreed, Josiah could wait until morning to be seen.
I knew the pediatrician's office opened at 8:30, so I was up, showered, and dressed by 8. I was watching the clock with the intention of calling them at 8:35. Well, as usual, they beat me to the punch. At 8:15, our phone rang. Sure enough! It was the pediatrician's office calling to see how Josiah was doing. I explained. He fussed off and on during the night. His fever remained when he awoke at 4am. We were given a 9:45am appointment.
At 9am, we were out the door. The big boys were in school allowing Carl & I to take Josiah in alone. Once inside the room, they asked what he currently weighs. Well, you know me - I stopped weighing him at home because I was becoming a bit obsessive about the weight issues lol. So, I gently said "Can we weigh him here?" Minutes later, Josiah was undressed and laying on the scale. I knew that he weighed 15 lbs 3oz on Aug 16th. I watched the scale teeter - I was simply waiting for the end result. OMG! 17lbs 2oz. He did it! He gained 2 lbs in 5 weeks! I almost started dancing in the hallway.
They examined Josiah. Luckily, nothing serious. No ear infections. No respiratory issues. It boils down to a cold/viral thing. Thank goodness! As we were leaving, we stopped in the hallway. The MD passes by smiling. He tells the nurse, "my two failure to thrive kids are both thriving."
"My two failure to thrive kids are both thriving."
I'll take it!
'Failure to Thrive' has always been that phrase we didn't want to hear. We didn't want Josiah diagnosed with "failure to thrive." Though it's just a concept, I guess the name sounds so horrific to Carl and I. Despite providers not using it, it still remained. It was the (usually) unspoken truth. I say usually, because hidden on a medical summary somewhere are the words 'history of failure to thrive.' Carl and I have never considered Josiah as failing to thrive. So, I set out to check definitions.
Johns Hopkins refers to failure to thrive in this way: "Children are diagnosed with failure to thrive when their weight or rate of weight gain is significantly below that of other children of similar age and gender. Infants or children that fail to thrive seem to be dramatically smaller or shorter than other children the same age." It goes on to say that failure to thrive can be the result of physical problems (such as Down Syndrome) or environmental problems (such as abuse/neglect).
Ok, fair. I can agree that Josiah does not match the weight of other children his age. I guess it's the phrase that is despised. It feels like it implies something sinister. Perhaps, in some cases it is caused by something sinister.
I've never brought myself to write about this as it's so personal for us. However, yesterday gave me good cause to mention it.
Josiah came down with a fever on Sunday. 101.3. It was late in the afternoon. He was crying non-stop, difficult to console. I finally gave him a small dose of Tylenol and called the pediatrician's office. An RN was on the phone within a few minutes. We agreed, Josiah could wait until morning to be seen.
I knew the pediatrician's office opened at 8:30, so I was up, showered, and dressed by 8. I was watching the clock with the intention of calling them at 8:35. Well, as usual, they beat me to the punch. At 8:15, our phone rang. Sure enough! It was the pediatrician's office calling to see how Josiah was doing. I explained. He fussed off and on during the night. His fever remained when he awoke at 4am. We were given a 9:45am appointment.
At 9am, we were out the door. The big boys were in school allowing Carl & I to take Josiah in alone. Once inside the room, they asked what he currently weighs. Well, you know me - I stopped weighing him at home because I was becoming a bit obsessive about the weight issues lol. So, I gently said "Can we weigh him here?" Minutes later, Josiah was undressed and laying on the scale. I knew that he weighed 15 lbs 3oz on Aug 16th. I watched the scale teeter - I was simply waiting for the end result. OMG! 17lbs 2oz. He did it! He gained 2 lbs in 5 weeks! I almost started dancing in the hallway.
They examined Josiah. Luckily, nothing serious. No ear infections. No respiratory issues. It boils down to a cold/viral thing. Thank goodness! As we were leaving, we stopped in the hallway. The MD passes by smiling. He tells the nurse, "my two failure to thrive kids are both thriving."
"My two failure to thrive kids are both thriving."
I'll take it!
Labels:
down syndrome,
DS,
failure to thrive,
fever,
gain,
MD,
pediatrician,
rn,
T21,
Trisomy 21,
weight
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