"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 :)
Showing posts with label weight. Show all posts
Showing posts with label weight. Show all posts
Saturday, November 9, 2013
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
Friday, September 20, 2013
DS Clinic
Wednesday night, Josiah went to bed at 6:30. The 'big' boys were in bed at 7. We had succeeded in getting them to bed early. C and I were in bed by 10pm. We knew morning would come quickly. We were right.
The alarm went off at 3am. I continued to hit 'snooze' until 3:36am. I couldn't delay this any longer. I was up, showered, and dressed by 4am. At 4:10, we were waking the three children up. Our goal was to leave at 5am. After feeding and dressing the kids, we were only a few minutes late. At 5:17, we were out the door, filling up the gas tank, and headed for the highway. Josiah had his Down syndrome clinic on Thursday. If we don't leave early, traffic can be a nightmare.
At 6:30am, we had made the 30mile drive. We were parked in the garage, one block from Children's. We made our way up to the hospital. The morning had gone smoothly, so far. The big boys played on the musical stairs, then we were off to have breakfast. After eating, we decided to roam around a bit. We checked out a few of the important places C and the boys may want to spend time, while waiting for Josiah and I.
By 7:45am, we were checked in at the DS clinic. We were about 45 minutes early. The first of many checks started. First, height and weight. Josiah weighed in at 27 lbs. He is 33.5" long. Ha!!!!
By 8:30, Josiah and I headed in to meet with the Director of the DS clinic. C and big boys were off to the playground. Josiah and I sat with the MD until almost 10am. Growth was charted. Once upon a time, Josiah's plotted numbers wouldn't land on the growth target. Once upon a time, weight was a huge concern. Once upon a time, they said he was failure to thrive. Once upon a time.... This day, however, was a different story. On the 'normal' growth chart (which Josiah used fall in the 0 percentile), he proved them all wrong. For weight, 56%. Height, 29%. Height to weight ratio, 79%. On the DS chart, he falls in the 90%. That's right, 90%!!!!
Medical history was reviewed. His thyroid from January looked good. He doesn't need to be rechecked until January. Josiah will need a sleep study by the age of 4 as sleep apnea is common in children with DS. Coincidentally, Josiah's tonsils are large - so this is something they will monitor. If all stays the same, Josiah will get a sleep study near his fourth birthday. No other concerns at this time. Yay!!!
We then met with the physical therapist (PT). That was Josiah's favorite part of the morning. He was able to get on the floor and play on the huge mat. He had a blast!!! The PT was impressed with what Josiah is doing. Josiah will continue to get PT through early intervention (EI). Hopefully, walking will be in his near future :)
The meeting with nutrition went well. Josiah is eating well and tolerating a variety of textures and flavors. We are fortunate. Josiah is doing great! The meeting with occupational therapy (OT) went equally as well. Josiah is making huge strides. The OT was thrilled with Josiah's progress thus far.
Upcoming appointments/follow ups were reviewed. During the Fall/Early winter months, we'll revisit orthopedics, ENT, and vision. Dental will continue to be followed locally. Flu shots are this weekend. I was given the option of adding audiology to the day's events. I opted to follow up locally. I will try to get that scheduled for next week. That is that!
It was 12:30 and we had had a great day at clinic. It was fun seeing friends old and new. We will see them all again in the Spring.
We left knowing how lucky we are. We have three beautiful, happy, boys. We revel in the beautiful moments. We take nothing for granted. Life is good!!!
The alarm went off at 3am. I continued to hit 'snooze' until 3:36am. I couldn't delay this any longer. I was up, showered, and dressed by 4am. At 4:10, we were waking the three children up. Our goal was to leave at 5am. After feeding and dressing the kids, we were only a few minutes late. At 5:17, we were out the door, filling up the gas tank, and headed for the highway. Josiah had his Down syndrome clinic on Thursday. If we don't leave early, traffic can be a nightmare.
At 6:30am, we had made the 30mile drive. We were parked in the garage, one block from Children's. We made our way up to the hospital. The morning had gone smoothly, so far. The big boys played on the musical stairs, then we were off to have breakfast. After eating, we decided to roam around a bit. We checked out a few of the important places C and the boys may want to spend time, while waiting for Josiah and I.
By 7:45am, we were checked in at the DS clinic. We were about 45 minutes early. The first of many checks started. First, height and weight. Josiah weighed in at 27 lbs. He is 33.5" long. Ha!!!!
By 8:30, Josiah and I headed in to meet with the Director of the DS clinic. C and big boys were off to the playground. Josiah and I sat with the MD until almost 10am. Growth was charted. Once upon a time, Josiah's plotted numbers wouldn't land on the growth target. Once upon a time, weight was a huge concern. Once upon a time, they said he was failure to thrive. Once upon a time.... This day, however, was a different story. On the 'normal' growth chart (which Josiah used fall in the 0 percentile), he proved them all wrong. For weight, 56%. Height, 29%. Height to weight ratio, 79%. On the DS chart, he falls in the 90%. That's right, 90%!!!!
Medical history was reviewed. His thyroid from January looked good. He doesn't need to be rechecked until January. Josiah will need a sleep study by the age of 4 as sleep apnea is common in children with DS. Coincidentally, Josiah's tonsils are large - so this is something they will monitor. If all stays the same, Josiah will get a sleep study near his fourth birthday. No other concerns at this time. Yay!!!
We then met with the physical therapist (PT). That was Josiah's favorite part of the morning. He was able to get on the floor and play on the huge mat. He had a blast!!! The PT was impressed with what Josiah is doing. Josiah will continue to get PT through early intervention (EI). Hopefully, walking will be in his near future :)
The meeting with nutrition went well. Josiah is eating well and tolerating a variety of textures and flavors. We are fortunate. Josiah is doing great! The meeting with occupational therapy (OT) went equally as well. Josiah is making huge strides. The OT was thrilled with Josiah's progress thus far.
Upcoming appointments/follow ups were reviewed. During the Fall/Early winter months, we'll revisit orthopedics, ENT, and vision. Dental will continue to be followed locally. Flu shots are this weekend. I was given the option of adding audiology to the day's events. I opted to follow up locally. I will try to get that scheduled for next week. That is that!
It was 12:30 and we had had a great day at clinic. It was fun seeing friends old and new. We will see them all again in the Spring.
We left knowing how lucky we are. We have three beautiful, happy, boys. We revel in the beautiful moments. We take nothing for granted. Life is good!!!
Sunday, May 12, 2013
18-Month Visit and Other Stuff.
We brought Josiah to playgroup on Monday, as scheduled. I think it was the best session yet. He tried to kiss a few of the pretty girls (his standard protocol). He cooperated with Miss J (the PT who runs the group). He was not without complaint - but he cooperated none-the-less. K came in the afternoon and had a great session with him.
Josiah's speech therapist cancelled their biweekly session on Tuesday a.m. due to a stomach virus. We were thankful she chose not to share that with us. It worked out well, as Josiah was able to sleep in (which he loves to do). We woken him by 9, had him fed, and headed out for his (much anticipated) 18 month check up.
We arrived at the pediatrician's office and were ushered immediately into a room. The MD arrived and was met with big smiles. Ears were the first order of business. Both ears - clear! Yes!!! Josiah was very cooperative with the usual pokes and prods. He was weighed. 23 pounds, 8 ounces. He was measured. 32" tall. The MD remarked as to just how well he was doing was a "Down's baby." I remarked, "For ANY baby, he's doing well." Please understand, we ADORE this MD & he is amazing with our kids. I still feel the need to correct certain statements :)
Unfortunately, car problems forced us to cancel the audiology appointment for Wednesday. With those problems now resolved, I will attempt to get him an appointment for this week or next. Our PT, whom we had cancelled, miraculously appeared on our doorstep at her scheduled time. I'm telling you, things really do work out just the way they are supposed to. Josiah was tired - we had woken him early in anticipation of going to the morning appointment. He was tired. The session was shorter than usual. It was a good session regardless.
Thursday, we took a much needed break. We never made it to the afternoon playgroup because Josiah fell asleep. It all worked out fine. We were exhausted and this gave us a little extra time at home.
Friday was a nice day with Josiah (the big boys were at school). The afternoon found us running errands, returning borrowed vehicles, picking up flower orders, and even a quick visit to the grandparents house.
Saturday, our 3 yr old headed to his grandparents for a solo sleepover. The 6 yr old gained much-needed solo time with Mom & Dad.
It's been a busy week. A few more blinks and it will be over....
Josiah's speech therapist cancelled their biweekly session on Tuesday a.m. due to a stomach virus. We were thankful she chose not to share that with us. It worked out well, as Josiah was able to sleep in (which he loves to do). We woken him by 9, had him fed, and headed out for his (much anticipated) 18 month check up.
We arrived at the pediatrician's office and were ushered immediately into a room. The MD arrived and was met with big smiles. Ears were the first order of business. Both ears - clear! Yes!!! Josiah was very cooperative with the usual pokes and prods. He was weighed. 23 pounds, 8 ounces. He was measured. 32" tall. The MD remarked as to just how well he was doing was a "Down's baby." I remarked, "For ANY baby, he's doing well." Please understand, we ADORE this MD & he is amazing with our kids. I still feel the need to correct certain statements :)
Unfortunately, car problems forced us to cancel the audiology appointment for Wednesday. With those problems now resolved, I will attempt to get him an appointment for this week or next. Our PT, whom we had cancelled, miraculously appeared on our doorstep at her scheduled time. I'm telling you, things really do work out just the way they are supposed to. Josiah was tired - we had woken him early in anticipation of going to the morning appointment. He was tired. The session was shorter than usual. It was a good session regardless.
Thursday, we took a much needed break. We never made it to the afternoon playgroup because Josiah fell asleep. It all worked out fine. We were exhausted and this gave us a little extra time at home.
Friday was a nice day with Josiah (the big boys were at school). The afternoon found us running errands, returning borrowed vehicles, picking up flower orders, and even a quick visit to the grandparents house.
Saturday, our 3 yr old headed to his grandparents for a solo sleepover. The 6 yr old gained much-needed solo time with Mom & Dad.
It's been a busy week. A few more blinks and it will be over....
Saturday, May 4, 2013
Just Another Ear Infection
A few times last weekend, I questioned the possibility that Josiah's ears were bothering him. His mood remained so happy that it was hard to fathom, but certainly possible (we've seen it before). I've read the some children with Down syndrome don't experience pain in the same way as other children. I'm wondering if that is true....
Monday morning, we decided to forgo early intervention's playgroup, favoring a trip to the pediatrician. Unfortunately, they could not see Josiah for his (now overdue) 18 month check up; They could, however, schedule him for a sick visit. We graciously accepted.
We arrived about 20 minutes early for our appointment and ushered, fairly quickly, into a room. After a brief wait, Dr. W arrived. Josiah was his usual happy self, greeting Dr. W with a smile. Josiah's congestion from this recent cold was obvious but not concerning. I explained that I questioned an ear infection. Within moments it was confirmed - Josiah has a double ear infection. He never fussed....
While we were there, I asked them to weigh Josiah (because this Mama's curiosity had gotten the better of her). They did. With only a diaper on, he weighed in at 23 pounds, 3 ounces. Holy moly, my little Italian boy.
We went to the MD for just another ear infection. We headed home with two ear infections and two medications. However, we have one very healthy, normal, 23.3 lb, happy little boy....I'll take it!
My Dad and I talked, a few times, about creating a chart. In essence, to compare the weight/age of the 3 boys. Dad - I finally did just that!!! On the X axis, weight is listed. On the y axis, age is listed.
As of 15 months, Josiah surpasses one of his brothers :) Yes, this Mama is doing a happy dance!
Monday morning, we decided to forgo early intervention's playgroup, favoring a trip to the pediatrician. Unfortunately, they could not see Josiah for his (now overdue) 18 month check up; They could, however, schedule him for a sick visit. We graciously accepted.
We arrived about 20 minutes early for our appointment and ushered, fairly quickly, into a room. After a brief wait, Dr. W arrived. Josiah was his usual happy self, greeting Dr. W with a smile. Josiah's congestion from this recent cold was obvious but not concerning. I explained that I questioned an ear infection. Within moments it was confirmed - Josiah has a double ear infection. He never fussed....
While we were there, I asked them to weigh Josiah (because this Mama's curiosity had gotten the better of her). They did. With only a diaper on, he weighed in at 23 pounds, 3 ounces. Holy moly, my little Italian boy.
We went to the MD for just another ear infection. We headed home with two ear infections and two medications. However, we have one very healthy, normal, 23.3 lb, happy little boy....I'll take it!
My Dad and I talked, a few times, about creating a chart. In essence, to compare the weight/age of the 3 boys. Dad - I finally did just that!!! On the X axis, weight is listed. On the y axis, age is listed.
As of 15 months, Josiah surpasses one of his brothers :) Yes, this Mama is doing a happy dance!
Sunday, November 11, 2012
The One-Year Check Up
October was a busy month full of birthdays (including Josiah's), Halloween parties, and outings. This was in addition to school (K and preschool) and Early Intervention. As is the norm, Josiah's 'one year old' distinction earned him his one-year check up at the pediatrician's office.
A few days after his birthday, we headed out in the a.m. to take him to the MD. We arrived a few minutes early. I felt confident that he had continued to gain weight. I was hoping that it would be 'enough.' Luckily for me, it's the first thing they do - weigh the child. It was 'just what I needed.' He weighed in at 18lbs 9oz. He measured a long 29.5 inches. To make matters more exciting, he plotted on the chart - the 'typical' chart. They, apparently, don't like to use the Down Syndrome growth chart any longer, so the 'typical' chart it is. He plotted on the chart, for weight, for the very first time ever!!! He's in the 3rd percentile for weight; He's in the 36th percentile for height. Our boy made the charts!!! :)
Of course, all the measurements were obtained by the nurse. When the doctor came in, I was quick to share the numbers. His smile told it all! He said, "Josiah's just the size of a small one year old." "My boys weren't much bigger than he his; they weren't 20 lbs at their first birthday." Finally, I can breathe a sigh of relief. I can finally stop being so worried about this nonsense :)
Josiah received his flu booster shot (two are always required the first year). He received his other vaccinations and handled them like a trooper. Before we knew it, it was time to leave. Next visit: 15 months.
So, here we are. One year old and all is well :) Now, it's just time to follow up on hearing tests, etc...
A few days after his birthday, we headed out in the a.m. to take him to the MD. We arrived a few minutes early. I felt confident that he had continued to gain weight. I was hoping that it would be 'enough.' Luckily for me, it's the first thing they do - weigh the child. It was 'just what I needed.' He weighed in at 18lbs 9oz. He measured a long 29.5 inches. To make matters more exciting, he plotted on the chart - the 'typical' chart. They, apparently, don't like to use the Down Syndrome growth chart any longer, so the 'typical' chart it is. He plotted on the chart, for weight, for the very first time ever!!! He's in the 3rd percentile for weight; He's in the 36th percentile for height. Our boy made the charts!!! :)
Of course, all the measurements were obtained by the nurse. When the doctor came in, I was quick to share the numbers. His smile told it all! He said, "Josiah's just the size of a small one year old." "My boys weren't much bigger than he his; they weren't 20 lbs at their first birthday." Finally, I can breathe a sigh of relief. I can finally stop being so worried about this nonsense :)
Josiah received his flu booster shot (two are always required the first year). He received his other vaccinations and handled them like a trooper. Before we knew it, it was time to leave. Next visit: 15 months.
So, here we are. One year old and all is well :) Now, it's just time to follow up on hearing tests, etc...
Wednesday, October 31, 2012
31 for 21 Blog Challenge: POST TWENTY FOUR: Health Considerations
Health Considerations
Besides having a distinct physical appearance, children with Down syndrome frequently have specific health-related problems. A lowered resistance to infection makes these children more prone to respiratory problems. Visual problems such as crossed eyes and far- or nearsightedness are common in individuals with Down syndrome, as are mild to moderate hearing loss and speech difficulty. Approximately one third of babies born with Down syndrome have heart defects, most of which are now successfully correctable. Some individuals are born with gastrointestinal tract problems that can be surgically corrected.Some people with Down syndrome also may have a condition known as Atlantoaxial Instability, a misalignment of the top two vertebrae of the neck. This condition makes these individuals more prone to injury if they participate in activities which overextend or flex the neck. Parents are urged to have their child examined by a physician to determine whether or not their child should be restricted from sports and activities which place stress on the neck. Although this misalignment is a potentially serious condition, proper diagnosis can help prevent serious injury.
Children with Down syndrome may have a tendency to become obese as they grow older. Besides having negative social implications, this weight gain threatens these individuals’ health and longevity. A supervised diet and exercise program may help reduce this problem.
Wednesday, October 17, 2012
31 for 21 Blog Challenge: DAY FIFTEEN: New Measurements
Ok....I'm a couple of days behind....I have a cold that is giving me a run for my money lol.
Monday morning, we had an appointment. Josiah was weighed (with diaper and lightweight clothes on) - he weighed 18lbs 9oz. Wow! I imagine he must weigh close to 18lbs with nothing on. That would mean an almost 1-lb weight gain since September 25th. That's great! He measured 28.5 inches long. He is actually plotting on the growth charts now!!!
In early writings, I know I would talk about utilizing Growth charts for children with Down Syndrome. Apparently, the powers that be no longer want these charts used. In their opinions, it increases the risk that children's malnutrition won't be caught as quickly. So, now they say to use the 'normal' charts.
K (child specialist from EI) also came out on Monday. Josiah did very well. The vest continues to provide him with a little extra support. However, he seems to be demonstrating little need for it. Rolling continues to be his favorite pastime. He is also now showing off his ability to get up on all fours (crawling position). He has rocked, in that position, a few times but hasn't actually crawled yet.
Big things are coming for Josiah :)....
Monday morning, we had an appointment. Josiah was weighed (with diaper and lightweight clothes on) - he weighed 18lbs 9oz. Wow! I imagine he must weigh close to 18lbs with nothing on. That would mean an almost 1-lb weight gain since September 25th. That's great! He measured 28.5 inches long. He is actually plotting on the growth charts now!!!
In early writings, I know I would talk about utilizing Growth charts for children with Down Syndrome. Apparently, the powers that be no longer want these charts used. In their opinions, it increases the risk that children's malnutrition won't be caught as quickly. So, now they say to use the 'normal' charts.
K (child specialist from EI) also came out on Monday. Josiah did very well. The vest continues to provide him with a little extra support. However, he seems to be demonstrating little need for it. Rolling continues to be his favorite pastime. He is also now showing off his ability to get up on all fours (crawling position). He has rocked, in that position, a few times but hasn't actually crawled yet.
Big things are coming for Josiah :)....
"Success is not final, failure is not fatal: it is the courage to continue that counts."
- Winston Churchill
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!
Sunday, September 23, 2012
Falling Back into the Swing of Things
Now that the kids are getting older, I realize how busy life can get in September.
We celebrated a 'first' anniversary - remembering the life of my oldest brother. He made choices we didn't understand. In September of 2011 he died, on the streets, at the age of 50. Although I don't miss the nonsense, I do miss him. I miss my brother.
Our oldest began Kindergarten. Here, the children attend full-days. He takes the bus to and from school every day. He leaves at 7:40am and arrives home at 3:10pm. He is doing well. He is already recognizing more letters and is proudly demonstrating math skills he has learned.
Our middle boy began early preschool. I wish the transition to school had been as easy on him. I don't know if it's been harder on him, or us (watching him struggle). We're in touch with the school, the administration, and the teachers. He's already turned a corner. We're waiting patiently to see if things improve further; we hope they do. (Early Intervention) EI continues to work with him on his speech. One recent, and major, accomplishment has been his willingness to say goodbye to his binky (except at night). This, in itself, has led to an improvement in speech. We're hoping for major strides in the next three months because in December he will age-out of EI.
Josiah continues to amaze us! We finally had his 'six' month pics taken. He was 10 months at the time, but who's counting.
Josiah continues to receive two EI visits per week. One from K (his child care specialist); the other from D (his physical specialist). Every other week, C arrives for OT (occupational therapy). In the coming months, he will begin receiving speech therapy. The progress he is making is astonishing (pics below).
Our first Buddy Walk is next week. We are tremendously excited about it. I'll be sure to tell you all about it. We can't wait!!!!
Next month is sure to be a great month. October!!!! It's Down Syndrome Awareness Month. Josiah will also celebrate his first birthday. Amazing stuff!!!
Finally, for those of you who enjoy pics. Here are some recent ones (mostly taken during Josiah's EI sessions):
Here, he demonstrates his ability to proudly hold his head high. His arm extension is wonderful! Belly time has become fun for Josiah. Catching him on his belly is actually rare these days as he loves to roll now. Gates have become his best friend (as they constantly save him from getting into forbidden areas). It's no longer uncommon for us to turn our back, only to find him on the other side of the room mere moments later.
The task of sitting is an obstacle anxious to be overcome. Josiah is starting to understand its importance....if only the balance would cooperate. With a toy carefully propped, he does quite well. It's only a matter of time before he's sitting independently :)
"Look, Mom! Only one hand!" It's a good thing that K is holding on. Josiah doesn't realize that his ability to fall over is greater than his ability to sit lol :)
This isn't the best pic of Josiah's face but it clearly shows that he is now tolerating weight-bearing on his legs/feet. This is a huge step!!! It's very exciting.
Josiah is learning what it feels like to bear weight on his knees. This kid is such a trooper. He is manhandled frequently and tolerates it like a champ :)
This was taken yesterday as our family enjoyed a much needed-day-to-ourselves outing. Fun was had by all.
We celebrated a 'first' anniversary - remembering the life of my oldest brother. He made choices we didn't understand. In September of 2011 he died, on the streets, at the age of 50. Although I don't miss the nonsense, I do miss him. I miss my brother.
Our oldest began Kindergarten. Here, the children attend full-days. He takes the bus to and from school every day. He leaves at 7:40am and arrives home at 3:10pm. He is doing well. He is already recognizing more letters and is proudly demonstrating math skills he has learned.
Our middle boy began early preschool. I wish the transition to school had been as easy on him. I don't know if it's been harder on him, or us (watching him struggle). We're in touch with the school, the administration, and the teachers. He's already turned a corner. We're waiting patiently to see if things improve further; we hope they do. (Early Intervention) EI continues to work with him on his speech. One recent, and major, accomplishment has been his willingness to say goodbye to his binky (except at night). This, in itself, has led to an improvement in speech. We're hoping for major strides in the next three months because in December he will age-out of EI.
Josiah continues to amaze us! We finally had his 'six' month pics taken. He was 10 months at the time, but who's counting.
Josiah continues to receive two EI visits per week. One from K (his child care specialist); the other from D (his physical specialist). Every other week, C arrives for OT (occupational therapy). In the coming months, he will begin receiving speech therapy. The progress he is making is astonishing (pics below).
Our first Buddy Walk is next week. We are tremendously excited about it. I'll be sure to tell you all about it. We can't wait!!!!
Next month is sure to be a great month. October!!!! It's Down Syndrome Awareness Month. Josiah will also celebrate his first birthday. Amazing stuff!!!
Finally, for those of you who enjoy pics. Here are some recent ones (mostly taken during Josiah's EI sessions):
Updates coming soon: Weight and MD stuff.....
October's goal: Daily blogging..... :)
Monday, August 20, 2012
Bated Breath's Burst Bubble
As you may remember, I was a bit excited 2 weeks ago. Josiah had last weighed in at 13lbs 2oz. That was June 8th. Fast forward to the end of July. I brilliantly 'guestimated' (at home) a weight of 16lbs 10oz. That result injected a, perhaps overinflated, sense of excitement (and desire to 'knock their socks off'). I was rearing to get Josiah back to the MD for an official weight check. Of course, I did what I threatened to do. I called the pediatrician's office and had him back in there on two days later.
August 1st. I had to settle for a different MD - Josiah's was on vacation (he had some nerve when I was ready to gloat :). Josiah was weighed. 15lbs 11oz. Crap!!!! A momentary disappointment, followed by "Hey! He gained over 2 lbs in less than 8 weeks." If I hadn't thought he weighed almost 17, I'd have been dancing down the hallway at the pediatrician's office. Unfortunately, I did think he weighed more. Oh well! I made one more appointment for mid-August in preparation for the audiology clinic appointment.
Mid-August....back to the pediatrician. 9 month visit (one month late), weight check, and ear check. Weigh-in - 15lbs 3oz - OUCH! It was an 8oz weight loss in 10 days. Damn! It's the never ending roller coaster. Well, it wasn't that bad. Josiah's regular pediatrician was back. Despite the 8oz weight loss, the MD was thrilled with the 2 lb weight gain over 2 months. Things are moving up, slowly but surely. (Kel, needless-to-say, I never got the satisfaction of the FU smile lol).
No shots for the 9-month check - thank goodness! Even better, Josiah had no fluid in his ears. That should bode well for audiology! Right???
So that's that. The weight is improving but not as quickly as "they" would like, sometimes. We're just muddling through day by day. We smile at every little accomplishment. We dream of the next one. We continue to watch with amazement, the blessings we have been gifted.
Next stop, Boston....the audiology appointment. I love walking into that clinic. You enter into a professional building on a busy city street. You pass the security desk, press the elevator button, and ultimately reach the destination. As the elevator doors open, the first visible 'landmark' is the Big Bird on the wall. He silently stands there to greet you, as if to say "Welcome."
We were there early....40 minutes early. Josiah was called fairly quickly - impressive in itself. They checked his ears for fluid and found none (YAY!!!!). He didn't like the ear probes. Therefore, the test result was not perfect. Ok, step 2. I carried Josiah into the testing room. He sat on my lap. An MD sat in front of us facing Josiah. She acted goofy in an effort to maintain his attention. Now the 'test' began. Noises (varying from tones to music to voices) would sound (in varying volume levels). They wanted Josiah to turn his head left or right - to correspond with the direction of the 'noise.' Well, he did - sometimes. His facial expression changed EVERY time indicating he could hear. However, he picked and chose when he wanted to turn his head.
They say the test was inconclusive. They say "developmentally" he's still a bit young for this test. Really???? I say....he thought their test was stupid :)
We'll go back, again, in a couple of months. Until then, Josiah continues to inspire me everyday <3. I love you, little man!
August 1st. I had to settle for a different MD - Josiah's was on vacation (he had some nerve when I was ready to gloat :). Josiah was weighed. 15lbs 11oz. Crap!!!! A momentary disappointment, followed by "Hey! He gained over 2 lbs in less than 8 weeks." If I hadn't thought he weighed almost 17, I'd have been dancing down the hallway at the pediatrician's office. Unfortunately, I did think he weighed more. Oh well! I made one more appointment for mid-August in preparation for the audiology clinic appointment.
Mid-August....back to the pediatrician. 9 month visit (one month late), weight check, and ear check. Weigh-in - 15lbs 3oz - OUCH! It was an 8oz weight loss in 10 days. Damn! It's the never ending roller coaster. Well, it wasn't that bad. Josiah's regular pediatrician was back. Despite the 8oz weight loss, the MD was thrilled with the 2 lb weight gain over 2 months. Things are moving up, slowly but surely. (Kel, needless-to-say, I never got the satisfaction of the FU smile lol).
No shots for the 9-month check - thank goodness! Even better, Josiah had no fluid in his ears. That should bode well for audiology! Right???
So that's that. The weight is improving but not as quickly as "they" would like, sometimes. We're just muddling through day by day. We smile at every little accomplishment. We dream of the next one. We continue to watch with amazement, the blessings we have been gifted.
Next stop, Boston....the audiology appointment. I love walking into that clinic. You enter into a professional building on a busy city street. You pass the security desk, press the elevator button, and ultimately reach the destination. As the elevator doors open, the first visible 'landmark' is the Big Bird on the wall. He silently stands there to greet you, as if to say "Welcome."
We were there early....40 minutes early. Josiah was called fairly quickly - impressive in itself. They checked his ears for fluid and found none (YAY!!!!). He didn't like the ear probes. Therefore, the test result was not perfect. Ok, step 2. I carried Josiah into the testing room. He sat on my lap. An MD sat in front of us facing Josiah. She acted goofy in an effort to maintain his attention. Now the 'test' began. Noises (varying from tones to music to voices) would sound (in varying volume levels). They wanted Josiah to turn his head left or right - to correspond with the direction of the 'noise.' Well, he did - sometimes. His facial expression changed EVERY time indicating he could hear. However, he picked and chose when he wanted to turn his head.
They say the test was inconclusive. They say "developmentally" he's still a bit young for this test. Really???? I say....he thought their test was stupid :)
We'll go back, again, in a couple of months. Until then, Josiah continues to inspire me everyday <3. I love you, little man!
"Don't ever underestimate me! I would never do that to you."
Monday, July 30, 2012
Weighting with Bated Breath
You might think I'm lacking in sleep if you noticed the title of this post, "Weighting" with Bated Breath. Nope! I'm not sleep deprived. It was a pretty cute pun though, huh? I AM waiting with bated breath - for Josiah's next pediatrician's appointment. I want an official weight check.
Yes! You heard me correctly. I WANT a weight check and, for once, I'm excited for what I know will knock their socks off!!!
The weight battle has been, seemingly, a never ending one. At the last visit, he was 4 days shy of 8 months. He weighed 13lbs 2oz. He seemed to average 1/2 lb weight gain per month. June 8th = 13lbs 2oz. The MD was pleased, to say the least. None-the-less, since then, I have avoided weighing him at home.....I don't like how obsessed I get. So, ignorance is bliss! lol. I stopped checking numbers.
Last week, C (the occupational therapist) was here. She remarked that Josiah seemed to be thriving. This was similar to conversations I recently had with his child care specialist and physical therapist. However, I had no numbers to go by....I just wouldn't do it.
Well, finally, curiosity got the best of this Mama. Three days ago, immediately after changing his diaper, I decided to get a "guesstimate" of his weight. I double-checked. I triple-checked. Holy cow! 16lbs 10oz (give or take a little).
That means that in approximately 7 weeks, Josiah has gained a whopping 3+ lbs!!!!
I'm calling the pediatrician's office tomorrow. I'm going to try to get him a weight-check appointment for Wednesday! I want this on record :)
Josiah will be 9 months old in about 2 weeks. Just for fun, I checked the 'blue books' of my other two boys for a comparison. My first, weighed approximately 20lbs at 9 months. My second, approximately 17lbs. Hmmm...... I can't help it - I'm chuckling. This is too funny!
I'll be back soon with the 'official' results.
Yes! You heard me correctly. I WANT a weight check and, for once, I'm excited for what I know will knock their socks off!!!
The weight battle has been, seemingly, a never ending one. At the last visit, he was 4 days shy of 8 months. He weighed 13lbs 2oz. He seemed to average 1/2 lb weight gain per month. June 8th = 13lbs 2oz. The MD was pleased, to say the least. None-the-less, since then, I have avoided weighing him at home.....I don't like how obsessed I get. So, ignorance is bliss! lol. I stopped checking numbers.
Last week, C (the occupational therapist) was here. She remarked that Josiah seemed to be thriving. This was similar to conversations I recently had with his child care specialist and physical therapist. However, I had no numbers to go by....I just wouldn't do it.
Well, finally, curiosity got the best of this Mama. Three days ago, immediately after changing his diaper, I decided to get a "guesstimate" of his weight. I double-checked. I triple-checked. Holy cow! 16lbs 10oz (give or take a little).
That means that in approximately 7 weeks, Josiah has gained a whopping 3+ lbs!!!!
I'm calling the pediatrician's office tomorrow. I'm going to try to get him a weight-check appointment for Wednesday! I want this on record :)
Josiah will be 9 months old in about 2 weeks. Just for fun, I checked the 'blue books' of my other two boys for a comparison. My first, weighed approximately 20lbs at 9 months. My second, approximately 17lbs. Hmmm...... I can't help it - I'm chuckling. This is too funny!
I'll be back soon with the 'official' results.
Saturday, June 9, 2012
Follow-up at the Pediatrician
Wow! OMG! Holy Canoli! That's all I can say :)
Friday morning, we headed to the pediatrician (Dr. W) to follow-up regarding Josiah's ears (he was found to have fluid in his ears on Thursday). The two year old was also due for an appointment, so we killed two birds with one stone.
Josiah was weighed upon arrival (the norm, at this point). He weighed in at 13 lbs 2 oz. The RN was pleased. I remained quietly anxious, as weight has been a struggle forever! When the Dr. W. came in, he asked about Josiah's weight. I cautiously answered. The pediatrician was HAPPY! I mean genuinely happy! He kept repeating, "I just can't get over Josiah's weight." "He looks amazing!" "He's doing great!" Dr. W. checked Josiah's ears - the fluid is minimal. There's nothing you can do for fluid in the ears, at this stage. So, we will check in with Dr. W. just before the next audiology appointment in Boston.
I joked with Dr. W. about how Josiah falls in the 10% percentile for weight and my 2 yr old falls in the 9% percentile for his weight. Dr. W. replied (regarding the 2 yr old), "He did. Now he falls in the 5th." I laughed. It goes to show that maybe our kids are just little lol.
To say I was relieved would be an understatement. I was excited, elated, pleased, satisfied...all things good :) We left with no mention of need for a next appointment (except the ears follow up).
I am eternally grateful!
Friday morning, we headed to the pediatrician (Dr. W) to follow-up regarding Josiah's ears (he was found to have fluid in his ears on Thursday). The two year old was also due for an appointment, so we killed two birds with one stone.
Josiah was weighed upon arrival (the norm, at this point). He weighed in at 13 lbs 2 oz. The RN was pleased. I remained quietly anxious, as weight has been a struggle forever! When the Dr. W. came in, he asked about Josiah's weight. I cautiously answered. The pediatrician was HAPPY! I mean genuinely happy! He kept repeating, "I just can't get over Josiah's weight." "He looks amazing!" "He's doing great!" Dr. W. checked Josiah's ears - the fluid is minimal. There's nothing you can do for fluid in the ears, at this stage. So, we will check in with Dr. W. just before the next audiology appointment in Boston.
I joked with Dr. W. about how Josiah falls in the 10% percentile for weight and my 2 yr old falls in the 9% percentile for his weight. Dr. W. replied (regarding the 2 yr old), "He did. Now he falls in the 5th." I laughed. It goes to show that maybe our kids are just little lol.
To say I was relieved would be an understatement. I was excited, elated, pleased, satisfied...all things good :) We left with no mention of need for a next appointment (except the ears follow up).
I am eternally grateful!
Friday, June 8, 2012
A Great Clinic Visit
Yesterday, we were up early....4am. I showered and dressed. I woke Josiah at 5am for his first feeding. At 6am, we were out the door. We had to check in by 8:30am....we wanted to beat the traffic going in. We were successful. We arrived at 7:30, parked, had breakfast in the cafeteria, and checked in around 8:15am. We were early for clinic; the other families hadn't arrived yet. It was our lucky day....Dr. D. (head of the clinic) was ready to meet with us.
We like Dr. D. We had met with her, at length, while i was still pregnant. We saw her briefly after Josiah's open heart surgery. It was nice to see her again. Josiah was weighed (13lbs), measured (length 25inches, head circum. 42.5cm). Josiah is tall, but underweight.....ugh! Thankfully, he's healthy & strong - she would just like to see him gain a little more weight; she concurs with the pediatrician. She suggested we talk to nutrition more about it.
Meanwhile, I asked about Josiah's thyroid. A lot of folks with Down Syndrome have hypothyroidism, but a few have hyperthyroidism (which would account for slow weight gain). KF (lactation consultant and friend) and I had discussed this at length. She told me about a test called Sensitive Thyroid-stimulating hormone test; I asked Dr. D about it. She agreed to perform the blood test. We were grateful.
Dr. D. asked a lot of questions and examined Josiah. Other than his weight, Dr. D voiced no concerns about Josiah. She said, "I love that he makes such direct eye contact." He was amazing and full of smiles! I think she was quite smitten with him. Who isn't??? :)
Next, we met with the speech therapist. We were encouraged to introduce Josiah to an array of flavors, textures, and the like. A few suggestions involve dissolvable foods and using mesh-feeders. We were all in agreement that Josiah wants to eat more. She was anxious to get started. While sitting on my lap, Josiah was introduced to a fruit bar & a dissolvable veggie puff. I wish I could've gotten pics of Josiah's face while he experimented with his new treats. It was hysterical.
Then we met with the physical therapist. She was quickly taken by Josiah's personality. Out came the playmat - he was happy to get out of that car seat for a spell. Josiah quickly demonstrated his ability to roll over, lift and turn his head, prop himself up with his arms, and reach for toys. He was also quick to strike up a conversation with him. She said he was the 'most talkative' baby that had been in to see her :) The session looked not unlike his sessions with D. Josiah is doing well. The goals are the same.
The nutritionist was our next stop. She agreed that we can increase Josiah's 'real food' intake, first to twice per day, then quickly moving to three times per day. She suggested giving Josiah 1/2 tsp of olive oil with each meal for the purpose of increasing calories. She agrees that Josiah is on the low end of the weight scale. He falls in the 10-20 percentile for weight (on the Down Syndrome chart).
Dental was our next visit. Josiah didn't mind this at all. The dentist rubbed Josiah's gums and checked his mouth. There are no signs of teeth yet. Apparently, it is not uncommon to have NO teeth until age 1 (for children with DS).
On to the laboratory for a blood test. This was the worst part of the day - luckily the 'bad' only lasted for a few moments. Josiah handled it like a trooper. They drew blood for the purpose of testing his thyroid. During the day, I was reminded that his newborn thyroid test came back normal; they assume this will too.
We left the hospital and walked one block away. We headed to the third floor. The elevator doors opened and we immediately noticed the large mural of sesame street/big bird on the wall. It was a welcoming place. This was the audiology clinic where Josiah would get his 6-month hearing check up. After a short wait, we were called in. Unfortunately, the test was aborted due to Josiah having fluid in both ears. We will return in a month or so, to have his hearing checked again. We'll follow up with the pediatrician.
At 2pm, we were headed back to the car. We made the 90 minute drive home (in moderate traffic). The Clinic was incredible! It was efficiently run, professional, welcoming, and worth every minute of our time. The next clinic appointment is scheduled for January. We are so fortunate that our son has these supports....we live in a great place, at a great time <3
We like Dr. D. We had met with her, at length, while i was still pregnant. We saw her briefly after Josiah's open heart surgery. It was nice to see her again. Josiah was weighed (13lbs), measured (length 25inches, head circum. 42.5cm). Josiah is tall, but underweight.....ugh! Thankfully, he's healthy & strong - she would just like to see him gain a little more weight; she concurs with the pediatrician. She suggested we talk to nutrition more about it.
Meanwhile, I asked about Josiah's thyroid. A lot of folks with Down Syndrome have hypothyroidism, but a few have hyperthyroidism (which would account for slow weight gain). KF (lactation consultant and friend) and I had discussed this at length. She told me about a test called Sensitive Thyroid-stimulating hormone test; I asked Dr. D about it. She agreed to perform the blood test. We were grateful.
Dr. D. asked a lot of questions and examined Josiah. Other than his weight, Dr. D voiced no concerns about Josiah. She said, "I love that he makes such direct eye contact." He was amazing and full of smiles! I think she was quite smitten with him. Who isn't??? :)
Next, we met with the speech therapist. We were encouraged to introduce Josiah to an array of flavors, textures, and the like. A few suggestions involve dissolvable foods and using mesh-feeders. We were all in agreement that Josiah wants to eat more. She was anxious to get started. While sitting on my lap, Josiah was introduced to a fruit bar & a dissolvable veggie puff. I wish I could've gotten pics of Josiah's face while he experimented with his new treats. It was hysterical.
Then we met with the physical therapist. She was quickly taken by Josiah's personality. Out came the playmat - he was happy to get out of that car seat for a spell. Josiah quickly demonstrated his ability to roll over, lift and turn his head, prop himself up with his arms, and reach for toys. He was also quick to strike up a conversation with him. She said he was the 'most talkative' baby that had been in to see her :) The session looked not unlike his sessions with D. Josiah is doing well. The goals are the same.
The nutritionist was our next stop. She agreed that we can increase Josiah's 'real food' intake, first to twice per day, then quickly moving to three times per day. She suggested giving Josiah 1/2 tsp of olive oil with each meal for the purpose of increasing calories. She agrees that Josiah is on the low end of the weight scale. He falls in the 10-20 percentile for weight (on the Down Syndrome chart).
Dental was our next visit. Josiah didn't mind this at all. The dentist rubbed Josiah's gums and checked his mouth. There are no signs of teeth yet. Apparently, it is not uncommon to have NO teeth until age 1 (for children with DS).
On to the laboratory for a blood test. This was the worst part of the day - luckily the 'bad' only lasted for a few moments. Josiah handled it like a trooper. They drew blood for the purpose of testing his thyroid. During the day, I was reminded that his newborn thyroid test came back normal; they assume this will too.
We left the hospital and walked one block away. We headed to the third floor. The elevator doors opened and we immediately noticed the large mural of sesame street/big bird on the wall. It was a welcoming place. This was the audiology clinic where Josiah would get his 6-month hearing check up. After a short wait, we were called in. Unfortunately, the test was aborted due to Josiah having fluid in both ears. We will return in a month or so, to have his hearing checked again. We'll follow up with the pediatrician.
At 2pm, we were headed back to the car. We made the 90 minute drive home (in moderate traffic). The Clinic was incredible! It was efficiently run, professional, welcoming, and worth every minute of our time. The next clinic appointment is scheduled for January. We are so fortunate that our son has these supports....we live in a great place, at a great time <3
Wednesday, June 6, 2012
Steady Progress
Since Josiah's EI assessment, things have been moving steadily along.
Last week, Josiah met with D for physical therapy. Once again, he was (apparently) out to impress. D repeatedly put him on his tummy; he repeatedly tolerated it. D was thrilled, again. Josiah performs tummy tricks like a trooper. He has started to utilize weight bearing in his arms, as shown here:
He is also starting to pull his legs under him. These are two great steps towards crawling.
Although I don't have pictures yet, Josiah has started "side sitting." He hates it, but is started to "feel" it. I'll get some pics soon.
Josiah worked with K this week, if you can call it work. For the first time ever, Josiah genuinely appeared to be 'lazy'. He showed no interest in working. It was hysterical! He didn't want to roll over. He didn't want to cooperate with tummy time. He wanted no part of his session. He was interested in casual play, feeding, and sleeping....too funny :)
I'm still waiting on the detailed notes from the assessment; I will post once available.
Meanwhile, I weighed Josiah yesterday. It's only an estimate BUT he weighed in at approximately 13.6 lbs. It's a definite weight gain.
Josiah will attend his first DS Clinic tomorrow. We only have vague information regarding what will transpire there. I'll look forward to telling you all about it.....
Last week, Josiah met with D for physical therapy. Once again, he was (apparently) out to impress. D repeatedly put him on his tummy; he repeatedly tolerated it. D was thrilled, again. Josiah performs tummy tricks like a trooper. He has started to utilize weight bearing in his arms, as shown here:
He is also starting to pull his legs under him. These are two great steps towards crawling.
Although I don't have pictures yet, Josiah has started "side sitting." He hates it, but is started to "feel" it. I'll get some pics soon.
Josiah worked with K this week, if you can call it work. For the first time ever, Josiah genuinely appeared to be 'lazy'. He showed no interest in working. It was hysterical! He didn't want to roll over. He didn't want to cooperate with tummy time. He wanted no part of his session. He was interested in casual play, feeding, and sleeping....too funny :)
I'm still waiting on the detailed notes from the assessment; I will post once available.
Meanwhile, I weighed Josiah yesterday. It's only an estimate BUT he weighed in at approximately 13.6 lbs. It's a definite weight gain.
Josiah will attend his first DS Clinic tomorrow. We only have vague information regarding what will transpire there. I'll look forward to telling you all about it.....
Saturday, May 19, 2012
PT Strides
Josiah met with D (physical therapist) from EI on Thursday. It was one of those "Wow!" sessions. Josiah met D with a huge smile and readiness to work hard. D's session note reads, "Josiah had the best session." It is obvious that his stamina and strength continue to improve by leaps and bounds.
In this first picture, D is encouraging Josiah to utilize his arms for trunk support. Josiah's chest is being supported by her hands. It is hoped that he will start to demonstrate good "weight bearing" on his arms. This accomplishment is a critical next step. As you can see from this picture, Josiah has gained a lot of head control in the past few months. He is able to hold his own head up for extended periods of time now.
Josiah leans on D, arms supported, in an effort to "learn what it feels like to sit." Josiah's trunk is still quite floppy. However, with a little arm support and place to rest his head - he's starting to figure it out. Look at the little grin on his face :)
Here, he has to utilize more of his own muscles to keep his trunk from becoming floppy (he's not actively leaning on D). D continues to support him via his arms. As he uses his neck muscles to support his head, he has to work much harder.
Josiah gets tired as the session continues. Here, he uses a boppy pillow for support while he rests his body. He uses the binky (aka, pacifier) which is another tool used to increase muscle tone. "The pacifier strengthens oral motor control and helps develop the muscles needed for drinking, eating solid foods, and talking." (http://www.downsyndromedallas.org/New%20Parent%20Guide/print%20docs/Feeding.pdf). You can see here that he is able to hold his 'binky' in his mouth. We even observed him take the binky out of his mouth and successfully return it to his mouth :)
As Josiah nears the end of the session, he is exhausted. He has worked hard. We resort to the tripod toy - it is the one toy that usually prevents a meltdown (especially at the end of the session). Josiah is content to play with the dangling toys. This, too, is still work but disguised as play. Josiah continues to strengthen his arms and stamina, each time he reaches for a hanging toy.
D is packing up to leave. I can the exhaustion in Josiah's eyes. He has worked hard. He deserves a break <3.
Next week, we'll do it all over again!
In this first picture, D is encouraging Josiah to utilize his arms for trunk support. Josiah's chest is being supported by her hands. It is hoped that he will start to demonstrate good "weight bearing" on his arms. This accomplishment is a critical next step. As you can see from this picture, Josiah has gained a lot of head control in the past few months. He is able to hold his own head up for extended periods of time now.
Josiah leans on D, arms supported, in an effort to "learn what it feels like to sit." Josiah's trunk is still quite floppy. However, with a little arm support and place to rest his head - he's starting to figure it out. Look at the little grin on his face :)
Here, he has to utilize more of his own muscles to keep his trunk from becoming floppy (he's not actively leaning on D). D continues to support him via his arms. As he uses his neck muscles to support his head, he has to work much harder.
Josiah gets tired as the session continues. Here, he uses a boppy pillow for support while he rests his body. He uses the binky (aka, pacifier) which is another tool used to increase muscle tone. "The pacifier strengthens oral motor control and helps develop the muscles needed for drinking, eating solid foods, and talking." (http://www.downsyndromedallas.org/New%20Parent%20Guide/print%20docs/Feeding.pdf). You can see here that he is able to hold his 'binky' in his mouth. We even observed him take the binky out of his mouth and successfully return it to his mouth :)
As Josiah nears the end of the session, he is exhausted. He has worked hard. We resort to the tripod toy - it is the one toy that usually prevents a meltdown (especially at the end of the session). Josiah is content to play with the dangling toys. This, too, is still work but disguised as play. Josiah continues to strengthen his arms and stamina, each time he reaches for a hanging toy.
D is packing up to leave. I can the exhaustion in Josiah's eyes. He has worked hard. He deserves a break <3.
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Tuesday, April 24, 2012
Hello Rice Cereal and Crazy Appetite
April vacation is officially over. Jesse is back to school. Our EI friends are back. Playgroups are running. Things seem back to normal; apparently in my old age, structure is a good thing :) I already feel less stir crazy and more focused.
I talked to KF this a.m. She was clearly not disappointed in Josiah's weight gain. Left to my own devices, I wasn't either. However, I still get anxiety riddled over how the MD may react to a less than ideal weight gain. We know that the MD would like to have seen twice the gain, but given everything - we think Josiah is doing great! He is alert, oriented, responsive, engaging, and active. He also grew three inches in the past two months. The MD remarked that his height places him in the 15th percentile. His weight places him on the "0" percentile. When asked, "of the Down Syndrome chart?," the answer was no. The computer only charts on the 'regular' chart.
So, at 6 months, he's 11lbs 7.5oz. He's 25.5inches tall. I decided to check the Down Syndrome growth chart for boys. Josiah's weight places him in the 10th percentile. His height places him in the 50th percentile! I think I'll start carrying this chart with me to the MD's office :)
On Thursday, the MD had given the go-ahead to start rice cereal. I'll be honest....I've dragged my feet a little on this issue. I had asked the question (can we start cereal?) then, of course, regretted having asked. I even told KF that I was probably going to delay the endeavor. Of course, then there are time when you ask yourself "why wait?" Last night proved to be one of those nights.
After breastfeeding Josiah, and giving him two bottles, the child seems insatiable. It was as if he decided to make up for all of the slow weight gain, in ONE night. So, out came the rice cereal. I made it thicker than usual (but not as "paste-like" as suggested by the MD). Josiah did great!!!! Given his extremely high palette, I wasn't sure how well he would do. As is typical for Josiah, he made me wonder why I had questioned his ability...... I lost track of how much, in all, he consumed but it was a lot for one little boy. Needless to say, when he fell asleep - he slept soundly all night.
I had to wake him this a.m. around 7am....the breastfeeding had gone too long - he needed to eat!!!! And so he did. Despite the fact that my milk supply was GREAT this a.m., he proved still hungry! So, out came the rice cereal again! He enjoyed his bowl of cereal & the remainder of a five ounce bottle. After a few good burps, he was in his swing & dreaming about the things babies dream about :)
James has been a crazy little person this morning. I've somehow managed to get a few things done. In a while, we'll pack up the little ones, pick up Jesse (and his friend) from school, and we're off to playgroup #1. Hopefully, I can squeeze a quick errand in after playgroup.
Tomorrow is another playgroup for James. Thursday, EI returns for Josiah. That will end the appointments for the week, I think.
Meanwhile, my non-smoking venture has been a complete success. It's been three weeks as of last night! It's been amazingly easy :)
Everyday, I continue to be thankful for everything, and everyone, in my life <3
I talked to KF this a.m. She was clearly not disappointed in Josiah's weight gain. Left to my own devices, I wasn't either. However, I still get anxiety riddled over how the MD may react to a less than ideal weight gain. We know that the MD would like to have seen twice the gain, but given everything - we think Josiah is doing great! He is alert, oriented, responsive, engaging, and active. He also grew three inches in the past two months. The MD remarked that his height places him in the 15th percentile. His weight places him on the "0" percentile. When asked, "of the Down Syndrome chart?," the answer was no. The computer only charts on the 'regular' chart.
So, at 6 months, he's 11lbs 7.5oz. He's 25.5inches tall. I decided to check the Down Syndrome growth chart for boys. Josiah's weight places him in the 10th percentile. His height places him in the 50th percentile! I think I'll start carrying this chart with me to the MD's office :)
On Thursday, the MD had given the go-ahead to start rice cereal. I'll be honest....I've dragged my feet a little on this issue. I had asked the question (can we start cereal?) then, of course, regretted having asked. I even told KF that I was probably going to delay the endeavor. Of course, then there are time when you ask yourself "why wait?" Last night proved to be one of those nights.
After breastfeeding Josiah, and giving him two bottles, the child seems insatiable. It was as if he decided to make up for all of the slow weight gain, in ONE night. So, out came the rice cereal. I made it thicker than usual (but not as "paste-like" as suggested by the MD). Josiah did great!!!! Given his extremely high palette, I wasn't sure how well he would do. As is typical for Josiah, he made me wonder why I had questioned his ability...... I lost track of how much, in all, he consumed but it was a lot for one little boy. Needless to say, when he fell asleep - he slept soundly all night.
I had to wake him this a.m. around 7am....the breastfeeding had gone too long - he needed to eat!!!! And so he did. Despite the fact that my milk supply was GREAT this a.m., he proved still hungry! So, out came the rice cereal again! He enjoyed his bowl of cereal & the remainder of a five ounce bottle. After a few good burps, he was in his swing & dreaming about the things babies dream about :)
James has been a crazy little person this morning. I've somehow managed to get a few things done. In a while, we'll pack up the little ones, pick up Jesse (and his friend) from school, and we're off to playgroup #1. Hopefully, I can squeeze a quick errand in after playgroup.
Tomorrow is another playgroup for James. Thursday, EI returns for Josiah. That will end the appointments for the week, I think.
Meanwhile, my non-smoking venture has been a complete success. It's been three weeks as of last night! It's been amazingly easy :)
Everyday, I continue to be thankful for everything, and everyone, in my life <3
Thursday, April 19, 2012
A Slow Gain
It has been a mellow week. While I usually enjoy 'down time,' I'm finding it to be an aggravation this week. I have been bored, 'stir crazy,' and seeking 'something.' It's hard to explain what I'm even looking for.....I'm just feeling a bit unsettled.
Jesse is enjoying April vacation this week. All but one of the EI workers are on vacation. One of the two playgroups are on vacation. So, James has had one playgroup; Josiah has had one EI visit with the feeding specialist C (and shadower D). As usual, he was out to impress his girlfriend(s). Josiah tolerated every task, and met every challenge with his usual determination.
James (and Daddy) attended the one playgroup. James was pleased to have 'his own thing' to do.
In between, Mama has been cleaning, going through things, doing laundry, and trying to keep myself from going insane. I've been dreaming up freecycle pick ups to do, just to pass the time. I even made Josiah's six-month check up for today, just to give me something to do.
Perhaps knowing that Josiah's weight would soon be checked, and the certainty that he did not gain 1oz per day, has had me on edge; I wouldn't be surprised. The end result was this: Josiah weighed in at 11lbs 7.5oz. He gained approximately 1/2oz per day over the last month. "Ideally," we would like to see a 1oz/day weight gain - that just may be unrealistic. Josiah, surprisingly, grew THREE inches over the past 2 months!!! That seemed like a lot - I was pleased. Though the MD would like to see 1oz/day, he seemed satisfied with the current gain....thank goodness!
Meanwhile, my mind has been wandering....I'll keep you posted on where it lands :)
Jesse is enjoying April vacation this week. All but one of the EI workers are on vacation. One of the two playgroups are on vacation. So, James has had one playgroup; Josiah has had one EI visit with the feeding specialist C (and shadower D). As usual, he was out to impress his girlfriend(s). Josiah tolerated every task, and met every challenge with his usual determination.
James (and Daddy) attended the one playgroup. James was pleased to have 'his own thing' to do.
In between, Mama has been cleaning, going through things, doing laundry, and trying to keep myself from going insane. I've been dreaming up freecycle pick ups to do, just to pass the time. I even made Josiah's six-month check up for today, just to give me something to do.
Perhaps knowing that Josiah's weight would soon be checked, and the certainty that he did not gain 1oz per day, has had me on edge; I wouldn't be surprised. The end result was this: Josiah weighed in at 11lbs 7.5oz. He gained approximately 1/2oz per day over the last month. "Ideally," we would like to see a 1oz/day weight gain - that just may be unrealistic. Josiah, surprisingly, grew THREE inches over the past 2 months!!! That seemed like a lot - I was pleased. Though the MD would like to see 1oz/day, he seemed satisfied with the current gain....thank goodness!
Meanwhile, my mind has been wandering....I'll keep you posted on where it lands :)
Friday, April 6, 2012
PT, Weight, and Cardiology
Josiah's PT appointment, yesterday, was another success. He met D with huge smiles. He was happy to demonstrate his tricks for her, again. He recognizes certain things as being 'work', thus is more apt to complain during the session. He is making huge strides every week. We need to continue to work on his head control. His arms/legs are making significant improvements each week. It's fun to watch him accomplish new goals.
Josiah had his cardiology appointment this morning. As planned, I woke him early to nurse him. Then, I offered him a bottle of high-calorie formula. He drank 2 oz before it was time to leave.
He slept on the way to the MD. He was in a good mood upon arrival. After the usual check in and EKG, they brought the scale in. 11lbs 2oz. I had estimated an 'ideal' weight of 11lbs 4.5oz for this a.m. We were only 2.5oz off....I'm elated! It was so much better than I feared.
The cardiologist is wonderful and he is thrilled with Josiah's progress. Josiah's heart is no longer a concern. Josiah doesn't need to be seen again for six months. The appointments are backing off....a sure sign of improvement. We are so thankful.
Meanwhile, today is day 4 of my new no-smoking campaign. I'm shocked by how easy this has been. I've known, for a long time, that I was ready to quit. I knew "cutting down" would never work for me. I knew it would be an "all or nothing" approach. This has played out well. I have no physical cravings. I have 2 or 3 "psychological/behavioral" cravings per day. They only last mere moments; I am able to easily redirect myself. After 27 yrs of smoking, believing it was going to be this easy would have seemed delusional. I am so thankful for the reality.
Tomorrow, we will join a new group of friends (all of whom are blessed with a child with DS), for an Easter Egg hunt & lunch. The siblings are all coming too. I'm really looking forward to meeting our new friends.
Sunday, family is coming here to celebrate Easter. I remain in awe of the miracles that have blessed my family. I remain thankful.....to so many.....for so much <3
Josiah had his cardiology appointment this morning. As planned, I woke him early to nurse him. Then, I offered him a bottle of high-calorie formula. He drank 2 oz before it was time to leave.
He slept on the way to the MD. He was in a good mood upon arrival. After the usual check in and EKG, they brought the scale in. 11lbs 2oz. I had estimated an 'ideal' weight of 11lbs 4.5oz for this a.m. We were only 2.5oz off....I'm elated! It was so much better than I feared.
The cardiologist is wonderful and he is thrilled with Josiah's progress. Josiah's heart is no longer a concern. Josiah doesn't need to be seen again for six months. The appointments are backing off....a sure sign of improvement. We are so thankful.
Meanwhile, today is day 4 of my new no-smoking campaign. I'm shocked by how easy this has been. I've known, for a long time, that I was ready to quit. I knew "cutting down" would never work for me. I knew it would be an "all or nothing" approach. This has played out well. I have no physical cravings. I have 2 or 3 "psychological/behavioral" cravings per day. They only last mere moments; I am able to easily redirect myself. After 27 yrs of smoking, believing it was going to be this easy would have seemed delusional. I am so thankful for the reality.
Tomorrow, we will join a new group of friends (all of whom are blessed with a child with DS), for an Easter Egg hunt & lunch. The siblings are all coming too. I'm really looking forward to meeting our new friends.
Sunday, family is coming here to celebrate Easter. I remain in awe of the miracles that have blessed my family. I remain thankful.....to so many.....for so much <3
Thursday, April 5, 2012
Waging the Weight Battle
So, it occurred to me that Josiah will be weighed in the morning. This is routine during his cardiology visits. I tossed him on the scale today....10lbs 11.5oz. Are you serious? I feel like the last two weeks has been a series of experiments gone wrong lol. I had stopped supplementing; that came back to bite me in the butt. I'd gotten lazy about pumping; I need to make an extra effort now. I've been letting Josiah sleep at night (generally 9pm until 7am); I will resume the midnight wake-up/feedings. Given that he weighed 10lbs 6.5oz 2 wks ago, he should "ideally" weigh 11lbs 4.5oz tomorrow morning. UGH!!! This continues to be a huge frustration for me. I cannot wait until we're at the point where we can relax for a minute without the fear of the "weight thing." So, I'll give him a few extra bottles tonight, in the a.m., and hope for the best. I'll fix the aforementioned things, in the meanwhile.
Tomorrow's cardiology appointment should be a breeze. Josiah is doing great post-surgery! We anticipate no problems or surprises. We just need to fix the weight issue before we see the pediatrician again :>
I think it's time to touch base with KF again. Soon.....this is driving me CRAZY :)
Tomorrow's cardiology appointment should be a breeze. Josiah is doing great post-surgery! We anticipate no problems or surprises. We just need to fix the weight issue before we see the pediatrician again :>
I think it's time to touch base with KF again. Soon.....this is driving me CRAZY :)
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