"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 pediatrician. Show all posts
Showing posts with label pediatrician. Show all posts
Saturday, November 9, 2013
Sunday, October 20, 2013
31 for 21 Challenge: Day Eighteen. Repost. New Parent's Checklist
This is a great checklist I found for new parents of a child with
Down Syndrome. It was written for parents living in the Pennsylvania
area but has been edited, here, for people living in the Massachusetts
area.
1. Contact the Down Syndrome Clinic at Boston Children's Hospital (857-218-4329) or Massachusetts General Hospital (617-643-8912).
2. Contact NDSS (National Down Syndrome Society) at 1-800-221-4602.
3. Contact MDSC (Massachusetts Down Syndrome Congress) at 1-800-664-MDSC.
4. Contact Early Intervention at 1-800-905-TIES or http://www.massfamilyties.org. EI is a statewide, integrated, developmental service available to all families of children between birth and three years of age. EI provides family-centered services that facilitate the developmental progress of children.
5. Apply for Social Security Income (1-800-772-1213) & Mass Health/Medicare (1-888-665-9993 or http://www.masshealth.gov).
SSI is a federal program of the Social Security Administration that provides monthly cash benefits and automatic MassHealth coverage for a child with special medical needs. Families with low to moderate income and limited resources may be eligible for SSI. Families whose income or resources exceed the limits of MassHealth Standard may be eligible for Commonhealth. Commonhealth is a state program that may charge a premium for MassHealth through a sliding fee based on income and family size.
6. Take a copy of the following to your pediatrician:
1. The Down Syndrome Health care Guidelines (available at http://www.ndss.org)
2. Contact info for the DS Clinic at BCH or MG
3. Growth charts for children with Down Syndrome (available at http://www.ndss.org)
1. Schedule an echocardiogram with a pediatric cardiologist.
Babies with Down syndrome are sometimes born with heart defects. It is important to identify any cardiac issues as soon as possible so treatment options can be discussed.
All babies with Down syndrome should have an echocardiogram by 3 months of age.
2. Schedule an appointment with a pediatric audiologist.
The ability to hear affects the ability to speak, so it is important to have your baby’s hearing checked.
Your child should receive a newborn hearing screen with an audiologist by 3 months of age (this is in addition to the newborn hearing screen that is routinely done before leaving the hospital). All babies should see an audiologist every 6 months until age 3 and then yearly.
3. Schedule an appointment with a pediatric ophthalmologist.
All babies with Down syndrome should receive an ophthalmological evaluation by 6 months of age and then yearly.
4. Schedule a thyroid function test.
Children with Down syndrome are at a higher risk of having abnormal thyroid levels, so it is important that your child’s thyroid levels be checked regularly.
All babies with Down syndrome should have their thyroid levels tested at birth, at 6 months of age, at 1 year of age, and then yearly.
Newborn checklist
1. Contact the Down Syndrome Clinic at Boston Children's Hospital (857-218-4329) or Massachusetts General Hospital (617-643-8912).
2. Contact NDSS (National Down Syndrome Society) at 1-800-221-4602.
3. Contact MDSC (Massachusetts Down Syndrome Congress) at 1-800-664-MDSC.
4. Contact Early Intervention at 1-800-905-TIES or http://www.massfamilyties.org. EI is a statewide, integrated, developmental service available to all families of children between birth and three years of age. EI provides family-centered services that facilitate the developmental progress of children.
5. Apply for Social Security Income (1-800-772-1213) & Mass Health/Medicare (1-888-665-9993 or http://www.masshealth.gov).
SSI is a federal program of the Social Security Administration that provides monthly cash benefits and automatic MassHealth coverage for a child with special medical needs. Families with low to moderate income and limited resources may be eligible for SSI. Families whose income or resources exceed the limits of MassHealth Standard may be eligible for Commonhealth. Commonhealth is a state program that may charge a premium for MassHealth through a sliding fee based on income and family size.
6. Take a copy of the following to your pediatrician:
1. The Down Syndrome Health care Guidelines (available at http://www.ndss.org)
2. Contact info for the DS Clinic at BCH or MG
3. Growth charts for children with Down Syndrome (available at http://www.ndss.org)
3-month checklist
1. Schedule an echocardiogram with a pediatric cardiologist.
Babies with Down syndrome are sometimes born with heart defects. It is important to identify any cardiac issues as soon as possible so treatment options can be discussed.
All babies with Down syndrome should have an echocardiogram by 3 months of age.
2. Schedule an appointment with a pediatric audiologist.
The ability to hear affects the ability to speak, so it is important to have your baby’s hearing checked.
Your child should receive a newborn hearing screen with an audiologist by 3 months of age (this is in addition to the newborn hearing screen that is routinely done before leaving the hospital). All babies should see an audiologist every 6 months until age 3 and then yearly.
3. Schedule an appointment with a pediatric ophthalmologist.
All babies with Down syndrome should receive an ophthalmological evaluation by 6 months of age and then yearly.
4. Schedule a thyroid function test.
Children with Down syndrome are at a higher risk of having abnormal thyroid levels, so it is important that your child’s thyroid levels be checked regularly.
All babies with Down syndrome should have their thyroid levels tested at birth, at 6 months of age, at 1 year of age, and then yearly.
Tuesday, August 6, 2013
What's That Sound?
Last weekend was spectacular. On Saturday, we attended our town's annual celebration. On Sunday, we went to a nearby historic home that hosts an annual family fun day. Both days were beautiful. The kids got out some excess energy; They breathed in lots of fresh air.
On Monday, we had a bit of a break. The EI (early intervention) coordinator was away on vacation, so Josiah had a Monday off. On Tuesday, his speech therapist came. Josiah spent the hour fussing and trying to avoid her. There's more of a story but I'll spare you the agony. Suffice to say, we're not impressed. On Wednesday, the PT (physical therapist) worked with Josiah. He sometimes complains when he has to work, but this day he cried incessantly.
Thursday, we made an appointment with the the pediatrician. The 3 year old had been coughing (mildly) for two days. I suspected Josiah might have an ear infection. In the end, the 3 year old was diagnosed with a mild case of croup. Josiah's ears were pink but not infected. Home we journeyed.
If you haven't experienced croup, it's interesting. When our little one first got croup (about a year ago), he emerged from his bedroom with the 'infamous' cough. C sat straight up and said, "What the hell is that?" It is that striking. The sound of a croup cough is often compared to that of a barking seal. It is caused by swelling of the larynx (voice box) and trachea (windpipe). It is caused, generally, by a virus. It is most common in children three and under.
Our week proceeded. On Friday, the 6 year old had a friend over. We went to a playground. It was a good day. Josiah went to bed around 8pm. Around 9pm, we were startled by Josiah's cries. Running into his room, I found him - eyes wide open - gasping for air. It is a scary thing. Within minutes, we had everyone packed into the van and were headed to the nearest e.r.
At the hospital, Josiah received his first steroid shot (which helped immensely). He was diagnosed with a severe case of croup, complete with stridor cough. For those of you that don't know, stridor is a noisy, harsh breathing that occurs when a child inhales. It is frightening sound. By 1am, we were heading home with all our babies. We were grateful.
Saturday morning, our six year old hurried out of his bedroom. He had to pee. Normally, I wouldn't have been startled. Perhaps it was the cough that accompanied his expeditious walk. It was the same cough that once made C sit up and ask, "What the hell is that?" Yes, I was sure. He, too, had the croup.
We were able to snag an 11:15 appointment with the pediatrician. In the end, the 6 year old had croup and conjunctivitis. The 3 year old's croup was the same but he was developing an ear infection. Josiah was 'croupy' but also had a full blown ear infection. After a couple of stops, we arrived home with one more humidifier, steroids for two children, antibiotics for two children, nebulizer meds for one child, and eye drops for another.
That was Saturday. Sunday, Monday, and today have been relatively peaceful. The steroids are done. We just have antibiotics and eye drops to administer. The kids are quickly getting back to normal. What's that sound? Now, it's the sound of (basically) healthy kids.
Be well, my friends :)
On Monday, we had a bit of a break. The EI (early intervention) coordinator was away on vacation, so Josiah had a Monday off. On Tuesday, his speech therapist came. Josiah spent the hour fussing and trying to avoid her. There's more of a story but I'll spare you the agony. Suffice to say, we're not impressed. On Wednesday, the PT (physical therapist) worked with Josiah. He sometimes complains when he has to work, but this day he cried incessantly.
Thursday, we made an appointment with the the pediatrician. The 3 year old had been coughing (mildly) for two days. I suspected Josiah might have an ear infection. In the end, the 3 year old was diagnosed with a mild case of croup. Josiah's ears were pink but not infected. Home we journeyed.
If you haven't experienced croup, it's interesting. When our little one first got croup (about a year ago), he emerged from his bedroom with the 'infamous' cough. C sat straight up and said, "What the hell is that?" It is that striking. The sound of a croup cough is often compared to that of a barking seal. It is caused by swelling of the larynx (voice box) and trachea (windpipe). It is caused, generally, by a virus. It is most common in children three and under.
Our week proceeded. On Friday, the 6 year old had a friend over. We went to a playground. It was a good day. Josiah went to bed around 8pm. Around 9pm, we were startled by Josiah's cries. Running into his room, I found him - eyes wide open - gasping for air. It is a scary thing. Within minutes, we had everyone packed into the van and were headed to the nearest e.r.
At the hospital, Josiah received his first steroid shot (which helped immensely). He was diagnosed with a severe case of croup, complete with stridor cough. For those of you that don't know, stridor is a noisy, harsh breathing that occurs when a child inhales. It is frightening sound. By 1am, we were heading home with all our babies. We were grateful.
Saturday morning, our six year old hurried out of his bedroom. He had to pee. Normally, I wouldn't have been startled. Perhaps it was the cough that accompanied his expeditious walk. It was the same cough that once made C sit up and ask, "What the hell is that?" Yes, I was sure. He, too, had the croup.
We were able to snag an 11:15 appointment with the pediatrician. In the end, the 6 year old had croup and conjunctivitis. The 3 year old's croup was the same but he was developing an ear infection. Josiah was 'croupy' but also had a full blown ear infection. After a couple of stops, we arrived home with one more humidifier, steroids for two children, antibiotics for two children, nebulizer meds for one child, and eye drops for another.
That was Saturday. Sunday, Monday, and today have been relatively peaceful. The steroids are done. We just have antibiotics and eye drops to administer. The kids are quickly getting back to normal. What's that sound? Now, it's the sound of (basically) healthy kids.
Be well, my friends :)
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....
Monday, May 6, 2013
Another Busy Week
It's always hard to believe that it's Monday again. It seems a struggle to get to Friday then, without warning, it's Monday. Just like last week, we have another busy week planned.
This morning, I was up early making orange playdough. It's a funny thing to be doing at 6:15 am, but I pooped out last night before making the 6th batch of playdough for my son's (the 3 yr old) school.
Once I'm ready for the day, we will wake up sleeping sunshine (otherwise known as Josiah). We have early intervention (EI) playgroup later this morning. After the one hour group, we're off to do a couple of quick errands. Then, Josiah has his favorite EI worker, K, coming to see him.
Tomorrow, Josiah has speech early in the a.m. After he's nice and tired from speech, we'll load him into the van and take him to the MD's office for 18 month well visit. Of course, they'll check the status of his ears at the same time. Today is day 8 of the medicine, so hopefully his ears are better.
Wednesday morning, we'll be at the Audiology clinic for a hearing screening. The last few at the Children's Hospital have been inconclusive, so we will return to the 'other' place - where we brought him at 1 month. They had great luck with him :) Sadly, we had to cancel PT this week, but she'll see him next week.
Thursday, our playgroup has been moved to the afternoon - works out well for us this week as C has an a.m. appt.
As of 5pm on Thursday, I'm not sure of our schedule....lots of possibilities....having made a final decision yet. I do know that Friday is appointment-free, at least for Josiah. Hmm.....what to do
Have a great week everyone :)
This morning, I was up early making orange playdough. It's a funny thing to be doing at 6:15 am, but I pooped out last night before making the 6th batch of playdough for my son's (the 3 yr old) school.
Once I'm ready for the day, we will wake up sleeping sunshine (otherwise known as Josiah). We have early intervention (EI) playgroup later this morning. After the one hour group, we're off to do a couple of quick errands. Then, Josiah has his favorite EI worker, K, coming to see him.
Tomorrow, Josiah has speech early in the a.m. After he's nice and tired from speech, we'll load him into the van and take him to the MD's office for 18 month well visit. Of course, they'll check the status of his ears at the same time. Today is day 8 of the medicine, so hopefully his ears are better.
Wednesday morning, we'll be at the Audiology clinic for a hearing screening. The last few at the Children's Hospital have been inconclusive, so we will return to the 'other' place - where we brought him at 1 month. They had great luck with him :) Sadly, we had to cancel PT this week, but she'll see him next week.
Thursday, our playgroup has been moved to the afternoon - works out well for us this week as C has an a.m. appt.
As of 5pm on Thursday, I'm not sure of our schedule....lots of possibilities....having made a final decision yet. I do know that Friday is appointment-free, at least for Josiah. Hmm.....what to do
Have a great week everyone :)
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!
Monday, December 31, 2012
Who Needs Synagis?
As Fall approached, our pediatrician's office worked steadfastly to get Josiah approved for Synagis shots this year. Their attempts were shot down. The MD appealed the decision. The whole process took until well-into October. Their effort, futile. The insurance company said that Josiah doesn't need them; he's not at-risk. Ok.....
As Christmas day came to an end, Josiah's cough became more pronounced. The three year old had had a cough for almost a month. They had both been diagnosed with an ear infection; both had resisted amoxycillin. They were both on their second round of antibiotics - a Saturday morning visit to the pediatrician, three days before Christmas, had proven that the first round was unsuccessful.
Late Tuesday night, I ventured into the attic searching for the two humidifiers I knew were stored there. I quickly found them and dragged them out of their hidden corners. Downstairs, I determined that only one was working. So, I had to choose - which kid gets the working one? Well, I rationalized, the three year old is getting better, and can take zarbees cough medicine (pure honey). So, Josiah won! The humidifier was set up in hopes that his cough would settle down.
During the next 48 hours, we listened to Josiah become more and more congested. Friday morning, I was well aware that the Holiday weekend loomed in front of us. We called the pediatrician and got a 2pm appointment. We figured, let's have the two youngest checked. As usual, we were there on time and ushered right into a room. The MD came in and made an immediate remark that Josiah didn't sound well.
The three year old was checked first and given a big thumbs up. His ear infection is on it's way out. Then, it was Josiah's turn. Lungs listened to - "they sound wet." That's not good. Ears checked - "that one looks awful!" Ugh! T-shirt pulled up - ribs retracting when breathing. Uh-oh! Did I mention that the Holiday weekend was looming? "He probably has RSV." "If it's not RSV, it's pneumonia." End result - head to Children's.
The MD called ahead so they would be expecting us. We hoped to drop the older boys off at their grandparents house - we were told not to waste the time. Three boys packed into the car, quick stop at the gas station, and we hit the road for Children's Hospital. Friday at 3pm, on a Holiday weekend, doesn't bode well for traveling (especially when there's a sense of urgency). We made it to the e.r. around 4:15pm. C dropped Josiah and I off, and headed home with the older boys.
E.R. visits always take a while. I was fairly certain we'd be staying overnight. It was only one year ago, on New Year's Eve weekend, we had made this same trip. Josiah had a suspected case of RSV and we were sent from pedi to e.r. Last year, Josiah was hospitalized. I anticipated the same.
I immediately stated that I wanted Josiah tested for RSV (they don't usually formally test because it doesn't change the actual treatment). The MD's were great and obliged. At 9pm, the MD entered the room, "Did you hear?" I replied, "Hear what?" MD, "You nailed it from the beginning. He has RSV." I asked, "Did you document that?" She smiled and simply said "Yes."
Luckily, they didn't feel that Josiah required hospitalization this time around. Josiah was discharged; C came back for us and we headed home at about 10pm.
He had a fever late that night; it responded well to Tylenol. His cough and congestion got worse; both now seem to be improving. It's New Year's Eve and we're home. We are thankful for the blessings in our life.
It upsets me that a faceless individual decided that our son isn't "at risk." Our son doesn't need the Synagis shots (which protect at-risk kids from RSV). I'm upset that our son has to go through the congestion, coughing, and fevers. I'm upset that he's been housebound due to my fear of him getting worse. I'm upset that he's sick. It's because of a faceless person and someone's bottom-line (ie money). So sad. After all, who needs synagis???
As Christmas day came to an end, Josiah's cough became more pronounced. The three year old had had a cough for almost a month. They had both been diagnosed with an ear infection; both had resisted amoxycillin. They were both on their second round of antibiotics - a Saturday morning visit to the pediatrician, three days before Christmas, had proven that the first round was unsuccessful.
Late Tuesday night, I ventured into the attic searching for the two humidifiers I knew were stored there. I quickly found them and dragged them out of their hidden corners. Downstairs, I determined that only one was working. So, I had to choose - which kid gets the working one? Well, I rationalized, the three year old is getting better, and can take zarbees cough medicine (pure honey). So, Josiah won! The humidifier was set up in hopes that his cough would settle down.
During the next 48 hours, we listened to Josiah become more and more congested. Friday morning, I was well aware that the Holiday weekend loomed in front of us. We called the pediatrician and got a 2pm appointment. We figured, let's have the two youngest checked. As usual, we were there on time and ushered right into a room. The MD came in and made an immediate remark that Josiah didn't sound well.
The three year old was checked first and given a big thumbs up. His ear infection is on it's way out. Then, it was Josiah's turn. Lungs listened to - "they sound wet." That's not good. Ears checked - "that one looks awful!" Ugh! T-shirt pulled up - ribs retracting when breathing. Uh-oh! Did I mention that the Holiday weekend was looming? "He probably has RSV." "If it's not RSV, it's pneumonia." End result - head to Children's.
The MD called ahead so they would be expecting us. We hoped to drop the older boys off at their grandparents house - we were told not to waste the time. Three boys packed into the car, quick stop at the gas station, and we hit the road for Children's Hospital. Friday at 3pm, on a Holiday weekend, doesn't bode well for traveling (especially when there's a sense of urgency). We made it to the e.r. around 4:15pm. C dropped Josiah and I off, and headed home with the older boys.
E.R. visits always take a while. I was fairly certain we'd be staying overnight. It was only one year ago, on New Year's Eve weekend, we had made this same trip. Josiah had a suspected case of RSV and we were sent from pedi to e.r. Last year, Josiah was hospitalized. I anticipated the same.
I immediately stated that I wanted Josiah tested for RSV (they don't usually formally test because it doesn't change the actual treatment). The MD's were great and obliged. At 9pm, the MD entered the room, "Did you hear?" I replied, "Hear what?" MD, "You nailed it from the beginning. He has RSV." I asked, "Did you document that?" She smiled and simply said "Yes."
Luckily, they didn't feel that Josiah required hospitalization this time around. Josiah was discharged; C came back for us and we headed home at about 10pm.
He had a fever late that night; it responded well to Tylenol. His cough and congestion got worse; both now seem to be improving. It's New Year's Eve and we're home. We are thankful for the blessings in our life.
It upsets me that a faceless individual decided that our son isn't "at risk." Our son doesn't need the Synagis shots (which protect at-risk kids from RSV). I'm upset that our son has to go through the congestion, coughing, and fevers. I'm upset that he's been housebound due to my fear of him getting worse. I'm upset that he's sick. It's because of a faceless person and someone's bottom-line (ie money). So sad. After all, who needs synagis???
Monday, December 24, 2012
Zero to Sixty Faster Than the Speed of Light
Tonight was certainly not one of my prouder moments. It involved an accumulation of stuff followed by a three year old boy.
I'd like to know how a child who is knee-high to a a grasshopper, can invoke such mommy- dearest-type reactions (perhaps that's a slight exaggeration).
The middle boy (age 3) had his "well visit" two weeks ago. All was perfect. 24 hours later, at my urging, C took him to the e.r. Diagnosis: middle ear infection. Treatment: Amoxicillin. No problem. Little one loves the bubblegum flavor so, for the next ten days, he gladly took his medicine. Now, albeit, an occasional dose was missed (school, fell asleep, Mom/Dad forgot, etc) so, fast forward to day ten, while I was pouring his last dose he pipes up "Mom, my ear hurts." Great! Last dose consumed. Pediatrician office the next day (yesterday). Yup! Ear infection still there. Same ear. "It's early in the season to see resistant strains," says the N.P. Well, that's encouraging!
Off we went with a new script - new medication. Let's try this again. Not missing a dose was stressed. To make it easier, the new medication is to be taken once daily. Perfect! Last night, 5pm, time to take medicine. Little one takes one sip (after questioning why this medication doesn't look like the last one - it's white in color, not pink). He took one sip and announced he hated it. End result - me laying him over my lap & squirting it in his mouth with a syringe. That's always a pleasant thing to have to do.
This afternoon, C calls pharmacy. We pay to have the medication flavored with 'bubble gum' flavoring. He brings it home. I pour it. Little one sees the same white color and questions it. Trusting me, he takes one sip. He promptly announces he hates it. End result - me laying him over my lap & squirting it in his mouth with a syringe. New twist - HE SPIT IT OUT. So much for not missing a dose. I was FIT TO BE TIED. Mad? Yes! Exasperated? Even more so!!! I went from zero to sixty faster than the speed of light. I yelled and shouted; I was bordering on 'over the edge.' I had to walk outside to cool off.
I'm already dreading tomorrow's dose.
I'd like to know how a child who is knee-high to a a grasshopper, can invoke such mommy- dearest-type reactions (perhaps that's a slight exaggeration).
The middle boy (age 3) had his "well visit" two weeks ago. All was perfect. 24 hours later, at my urging, C took him to the e.r. Diagnosis: middle ear infection. Treatment: Amoxicillin. No problem. Little one loves the bubblegum flavor so, for the next ten days, he gladly took his medicine. Now, albeit, an occasional dose was missed (school, fell asleep, Mom/Dad forgot, etc) so, fast forward to day ten, while I was pouring his last dose he pipes up "Mom, my ear hurts." Great! Last dose consumed. Pediatrician office the next day (yesterday). Yup! Ear infection still there. Same ear. "It's early in the season to see resistant strains," says the N.P. Well, that's encouraging!
Off we went with a new script - new medication. Let's try this again. Not missing a dose was stressed. To make it easier, the new medication is to be taken once daily. Perfect! Last night, 5pm, time to take medicine. Little one takes one sip (after questioning why this medication doesn't look like the last one - it's white in color, not pink). He took one sip and announced he hated it. End result - me laying him over my lap & squirting it in his mouth with a syringe. That's always a pleasant thing to have to do.
This afternoon, C calls pharmacy. We pay to have the medication flavored with 'bubble gum' flavoring. He brings it home. I pour it. Little one sees the same white color and questions it. Trusting me, he takes one sip. He promptly announces he hates it. End result - me laying him over my lap & squirting it in his mouth with a syringe. New twist - HE SPIT IT OUT. So much for not missing a dose. I was FIT TO BE TIED. Mad? Yes! Exasperated? Even more so!!! I went from zero to sixty faster than the speed of light. I yelled and shouted; I was bordering on 'over the edge.' I had to walk outside to cool off.
I'm already dreading tomorrow's dose.
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...
Saturday, September 29, 2012
Thankful For a Rainy Day
We have survived 5 days of school, 4 colds, 4 EI visits, 3 trips to the pediatrician, 3 flu shots, 2 on 'cough medicine' (ie honey), 1 fever, 1 ear infection, 1 preschool assessment, and 1 antibiotic. This is just since Sunday! Good Grief! We need this weekend to recover.
We had planned an outing for today, but given the illnesses of the week (mixed with today's rain) - we are staying home today. I need to get caught up on some much needed cleaning. Tomorrow is our first Buddy Walk - I am very excited! I'm just hoping the rain cooperates with us.
Monday, I cancelled Josiah's EI visit with K. I think that might be the first appointment I ever cancelled. That was the day we took Josiah to the MD due to a fever. On Tuesday, we were back at the pediatrician's office for scheduled flu shots for all three boys. They were troopers!
Wednesday, Josiah met with C (occupational therapy). He did a great job, as usual. Thursday, he met with D (physical therapy). This wasn't an 'all-star' week (like last week), but he did very well none-the-less. Josiah continues to prove increasing strength, stamina, and determination. He is sitting (with support), and can stand (with even more support). He squirms all over the place when on the floor - I suspect crawling isn't too far away.
It's been a busy, yet non-exciting, week. It was exhausting, actually lol.
Stealing moments for myself seem difficult, at best. Even now as I write, I struggle to get the thoughts in my brain transformed into words on paper. The 2 year old stands at the top of the stairs, steadfastly, screaming "MOMMY!" How 'Mommy' needs a break!
Sometimes it's best to give in. I shall cut this short and attend to my family. I will attempt to find some quiet time later to share more with you.
Happy rainy Saturday everyone!
We had planned an outing for today, but given the illnesses of the week (mixed with today's rain) - we are staying home today. I need to get caught up on some much needed cleaning. Tomorrow is our first Buddy Walk - I am very excited! I'm just hoping the rain cooperates with us.
Monday, I cancelled Josiah's EI visit with K. I think that might be the first appointment I ever cancelled. That was the day we took Josiah to the MD due to a fever. On Tuesday, we were back at the pediatrician's office for scheduled flu shots for all three boys. They were troopers!
Wednesday, Josiah met with C (occupational therapy). He did a great job, as usual. Thursday, he met with D (physical therapy). This wasn't an 'all-star' week (like last week), but he did very well none-the-less. Josiah continues to prove increasing strength, stamina, and determination. He is sitting (with support), and can stand (with even more support). He squirms all over the place when on the floor - I suspect crawling isn't too far away.
It's been a busy, yet non-exciting, week. It was exhausting, actually lol.
Stealing moments for myself seem difficult, at best. Even now as I write, I struggle to get the thoughts in my brain transformed into words on paper. The 2 year old stands at the top of the stairs, steadfastly, screaming "MOMMY!" How 'Mommy' needs a break!
Sometimes it's best to give in. I shall cut this short and attend to my family. I will attempt to find some quiet time later to share more with you.
Happy rainy Saturday everyone!
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!
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."
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
Tuesday, June 5, 2012
Friday's Facts 060112: A New Parent's Checklist
This is a great checklist I found for new parents of a child with Down Syndrome. It was written for parents living in the Pennsylvania area but has been edited, here, for people living in the Massachusetts area.
1. Contact the Down Syndrome Clinic at Boston Children's Hospital (857-218-4329) or Massachusetts General Hospital (617-643-8912).
2. Contact NDSS (National Down Syndrome Society) at 1-800-221-4602.
3. Contact MDSC (Massachusetts Down Syndrome Congress) at 1-800-664-MDSC.
4. Contact Early Intervention at 1-800-905-TIES or http://www.massfamilyties.org. EI is a statewide, integrated, developmental service available to all families of children between birth and three years of age. EI provides family-centered services that facilitate the developmental progress of children.
5. Apply for Social Security Income (1-800-772-1213) & Mass Health/Medicare (1-888-665-9993 or http://www.masshealth.gov).
SSI is a federal program of the Social Security Administration that provides monthly cash benefits and automatic MassHealth coverage for a child with special medical needs. Families with low to moderate income and limited resources may be eligible for SSI. Families whose income or resources exceed the limits of MassHealth Standard may be eligible for Commonhealth. Commonhealth is a state program that may charge a premium for MassHealth through a sliding fee based on income and family size.
6. Take a copy of the following to your pediatrician:
1. The Down Syndrome Health care Guidelines (available at http://www.ndss.org)
2. Contact info for the DS Clinic at BCH or MG
3. Growth charts for children with Down Syndrome (available at http://www.ndss.org)
1. Schedule an echocardiogram with a pediatric cardiologist.
Babies with Down syndrome are sometimes born with heart defects. It is important to identify any cardiac issues as soon as possible so treatment options can be discussed.
All babies with Down syndrome should have an echocardiogram by 3 months of age.
2. Schedule an appointment with a pediatric audiologist.
The ability to hear affects the ability to speak, so it is important to have your baby’s hearing checked.
Your child should receive a newborn hearing screen with an audiologist by 3 months of age (this is in addition to the newborn hearing screen that is routinely done before leaving the hospital). All babies should see an audiologist every 6 months until age 3 and then yearly.
3. Schedule an appointment with a pediatric ophthalmologist.
All babies with Down syndrome should receive an ophthalmological evaluation by 6 months of age and then yearly.
4. Schedule a thyroid function test.
Children with Down syndrome are at a higher risk of having abnormal thyroid levels, so it is important that your child’s thyroid levels be checked regularly.
All babies with Down syndrome should have their thyroid levels tested at birth, at 6 months of age, at 1 year of age, and then yearly.
Newborn checklist
1. Contact the Down Syndrome Clinic at Boston Children's Hospital (857-218-4329) or Massachusetts General Hospital (617-643-8912).
2. Contact NDSS (National Down Syndrome Society) at 1-800-221-4602.
3. Contact MDSC (Massachusetts Down Syndrome Congress) at 1-800-664-MDSC.
4. Contact Early Intervention at 1-800-905-TIES or http://www.massfamilyties.org. EI is a statewide, integrated, developmental service available to all families of children between birth and three years of age. EI provides family-centered services that facilitate the developmental progress of children.
5. Apply for Social Security Income (1-800-772-1213) & Mass Health/Medicare (1-888-665-9993 or http://www.masshealth.gov).
SSI is a federal program of the Social Security Administration that provides monthly cash benefits and automatic MassHealth coverage for a child with special medical needs. Families with low to moderate income and limited resources may be eligible for SSI. Families whose income or resources exceed the limits of MassHealth Standard may be eligible for Commonhealth. Commonhealth is a state program that may charge a premium for MassHealth through a sliding fee based on income and family size.
6. Take a copy of the following to your pediatrician:
1. The Down Syndrome Health care Guidelines (available at http://www.ndss.org)
2. Contact info for the DS Clinic at BCH or MG
3. Growth charts for children with Down Syndrome (available at http://www.ndss.org)
3-month checklist
1. Schedule an echocardiogram with a pediatric cardiologist.
Babies with Down syndrome are sometimes born with heart defects. It is important to identify any cardiac issues as soon as possible so treatment options can be discussed.
All babies with Down syndrome should have an echocardiogram by 3 months of age.
2. Schedule an appointment with a pediatric audiologist.
The ability to hear affects the ability to speak, so it is important to have your baby’s hearing checked.
Your child should receive a newborn hearing screen with an audiologist by 3 months of age (this is in addition to the newborn hearing screen that is routinely done before leaving the hospital). All babies should see an audiologist every 6 months until age 3 and then yearly.
3. Schedule an appointment with a pediatric ophthalmologist.
All babies with Down syndrome should receive an ophthalmological evaluation by 6 months of age and then yearly.
4. Schedule a thyroid function test.
Children with Down syndrome are at a higher risk of having abnormal thyroid levels, so it is important that your child’s thyroid levels be checked regularly.
All babies with Down syndrome should have their thyroid levels tested at birth, at 6 months of age, at 1 year of age, and then yearly.
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
Wednesday, March 28, 2012
A New Member of Our Team
On Monday, K arrived for Josiah's weekly session. KT (OT) joined us. Josiah enjoyed K and enjoyed meeting his new friend. The consult for OT was initiated due to Josiah's difficulties in gaining weight. Of course, we seemed to have broken through that barrier last week. Thus, I hoped we weren't wasting KT's time. Josiah enjoyed showing off all of his tricks. KT, who demonstrates a love for the babies, enjoyed watching, working, and playing with him.
Josiah is doing so well, and making huge strides every week. It's exciting to see. Despite having broken through the weight-gain hurdle, KT will continue to visit monthly for now. According to the American Academy of Pediatrics, babies should not start "food" until about 6 months of age. We don't know if the pediatrician will want to start food with him right at 6 months, or if he'll want to wait a bit longer. Josiah still has limited head control; that may play a role in determining when he starts "foods." When he does, I suspect that KT will be another invaluable team player. Josiah was born with an extremely high palette (not unusual in Down Syndrome). From what I've read, and heard, food can easily become lodged up there, and the child's tongue cannot reach high enough to dislodge it. OT can be very helpful in overcoming such hurdles. I am prepared for the (possible) continued eating challenges. I know Josiah will ultimately prove successful.
As a funny side note....yesterday, I had placed Josiah in his swing. James (age 2) was in the room alone with the little guy. I entered the living room only to find James feeding tiny little muffin crumbs to his baby brother. I softly reminded James that the baby is too little to eat "real food." All the while, I had to control my laughter. Josiah had muffin crumbs on his chin, lower lip, upper lip, and under his nose. He had little bits of crumbs on his tongue which he was happily gumming to death :) Josiah looked at me, then looked at James and gave him a huge smile. It was a cute moment. Josiah seemed to enjoy the momentary break from milk.
And, did I mention that the aforementioned muffin was chocolate chip????
Josiah is doing so well, and making huge strides every week. It's exciting to see. Despite having broken through the weight-gain hurdle, KT will continue to visit monthly for now. According to the American Academy of Pediatrics, babies should not start "food" until about 6 months of age. We don't know if the pediatrician will want to start food with him right at 6 months, or if he'll want to wait a bit longer. Josiah still has limited head control; that may play a role in determining when he starts "foods." When he does, I suspect that KT will be another invaluable team player. Josiah was born with an extremely high palette (not unusual in Down Syndrome). From what I've read, and heard, food can easily become lodged up there, and the child's tongue cannot reach high enough to dislodge it. OT can be very helpful in overcoming such hurdles. I am prepared for the (possible) continued eating challenges. I know Josiah will ultimately prove successful.
As a funny side note....yesterday, I had placed Josiah in his swing. James (age 2) was in the room alone with the little guy. I entered the living room only to find James feeding tiny little muffin crumbs to his baby brother. I softly reminded James that the baby is too little to eat "real food." All the while, I had to control my laughter. Josiah had muffin crumbs on his chin, lower lip, upper lip, and under his nose. He had little bits of crumbs on his tongue which he was happily gumming to death :) Josiah looked at me, then looked at James and gave him a huge smile. It was a cute moment. Josiah seemed to enjoy the momentary break from milk.
And, did I mention that the aforementioned muffin was chocolate chip????
Saturday, March 24, 2012
A Break-Through in the Weight Gain Battle
Yesterday, Josiah woke at about 7am. I had not forgotten that he had an appointment at the pediatrician at 10:30am. He was due for his next (and final) Synagis shot for this season. The Synagis shot requires a weight check, as the dosage is dependent on weight. I nursed him and prayed for an 'acceptable' weight gain.
Jesse went to school. Carl and I packed up the other boys and headed to the pediatrician. We were there a few minutes early, and brought straight to a room. I tried to remain optimistic, but prepared for the disappointment that has defined so many weight checks before. I got Josiah undressed and carried him to the scale. The moment of truth had arrived.
I placed him on the scale. I was hoping to be excited about the results. Part of me was ready to burst into tears if the results were not as I hoped. When the scale locked in with his current weight, I was ELATED! 10lbs 6.5oz. He had gained 15oz in 15 days. It was the 'picture perfect' weight gain (1 oz per day). I carried him back to the room; I couldn't help but feel overwhelmed with joy!
Within minutes, I could hear the pediatrician walking towards the room, all the way pronouncing "15oz in 15 days." LOL. At last, it was not going to feel like a 'doom and gloom' visit. I finally felt as if we had broken through that barrier. I was thrilled. Carl was thrilled. The MD (and nurses) were thrilled! FINALLY! He received his shot, and we were done! We were homeward bound, without the overwhelming anxiety of visits past. Josiah doesn't need to be seen until next month, for his 6-month check up.
We were winning the weight battle. I am still nursing, primarily. Josiah is only receiving 1-2 supplemental bottles per day. Don't believe anyone who tells you that a special needs child cannot be breastfed!
K called while we at the pediatrician's office. She is coming out on Monday with one more member of this amazing team! I was able to, briefly, update her with the good news. She shared in our excitement.
I called KF during the late afternoon hour. I was delighted to share our news with her. She has truly been an amazing support throughout this weight gain battle. Last week, she told me that this has become 'personal' for her too. I cannot explain how touched I've been by the amazing supports we have in our life. I told KF that her undying support through my breastfeeding journey, has been invaluable. I don't think I would've continued the BF without her help.
I've learned over the years that the most important things in a person's life, are those worth fighting for. This up-the-down-staircase journey is not always easy. However, it's one of those battles worth fighting. I have amazing parents, an incredible brother, and the best sister-in-law in the world. I am blessed with a husband, who is my best friend. I have 3 amazing boys who teach me new things, everyday. Our family has that one extra chromosome which has introduced us to new friends, new supports, new information, new learning opportunities, and confirmed our belief that we are the luckiest people in the world.
Jesse went to school. Carl and I packed up the other boys and headed to the pediatrician. We were there a few minutes early, and brought straight to a room. I tried to remain optimistic, but prepared for the disappointment that has defined so many weight checks before. I got Josiah undressed and carried him to the scale. The moment of truth had arrived.
I placed him on the scale. I was hoping to be excited about the results. Part of me was ready to burst into tears if the results were not as I hoped. When the scale locked in with his current weight, I was ELATED! 10lbs 6.5oz. He had gained 15oz in 15 days. It was the 'picture perfect' weight gain (1 oz per day). I carried him back to the room; I couldn't help but feel overwhelmed with joy!
Within minutes, I could hear the pediatrician walking towards the room, all the way pronouncing "15oz in 15 days." LOL. At last, it was not going to feel like a 'doom and gloom' visit. I finally felt as if we had broken through that barrier. I was thrilled. Carl was thrilled. The MD (and nurses) were thrilled! FINALLY! He received his shot, and we were done! We were homeward bound, without the overwhelming anxiety of visits past. Josiah doesn't need to be seen until next month, for his 6-month check up.
We were winning the weight battle. I am still nursing, primarily. Josiah is only receiving 1-2 supplemental bottles per day. Don't believe anyone who tells you that a special needs child cannot be breastfed!
K called while we at the pediatrician's office. She is coming out on Monday with one more member of this amazing team! I was able to, briefly, update her with the good news. She shared in our excitement.
I called KF during the late afternoon hour. I was delighted to share our news with her. She has truly been an amazing support throughout this weight gain battle. Last week, she told me that this has become 'personal' for her too. I cannot explain how touched I've been by the amazing supports we have in our life. I told KF that her undying support through my breastfeeding journey, has been invaluable. I don't think I would've continued the BF without her help.
I've learned over the years that the most important things in a person's life, are those worth fighting for. This up-the-down-staircase journey is not always easy. However, it's one of those battles worth fighting. I have amazing parents, an incredible brother, and the best sister-in-law in the world. I am blessed with a husband, who is my best friend. I have 3 amazing boys who teach me new things, everyday. Our family has that one extra chromosome which has introduced us to new friends, new supports, new information, new learning opportunities, and confirmed our belief that we are the luckiest people in the world.
Thursday, March 22, 2012
Great PT visit today :)
Josiah napped late yesterday, from 8:30pm until I woke him at 1:30am. He nursed and was back in bed at 2am. Carl and I followed shortly thereafter. The alarm woke us at 6:30, as scheduled. I woke Josiah up at 7am....I was excited for today's PT visit. I changed him, nursed him, and prepared the living room for his PT visit. K and D arrived promptly at 8am. I was beside myself with excitement. My fingers were crossed that Josiah would show D his new tricks. He did not disappoint.
Josiah was happy to see his 'girlfriends.' He was playful and engaging with both ladies. While on his back, he happily reached, grabbed, and played with several toys. He demonstrated his ability to raise both arms up the air, simultaneously. He played with his fingers and hands. He sucked on his arm lol. His side-lying was wonderful today. He even showed D his new trick of rolling over onto his belly....she had to help him 'unstick' his arms each time (as they become trapped underneath him). D taught him how to use his leg to return to his back from a side-lying position....he later demonstrated his understanding of the lesson. K and I eagerly pulled out the tripod toy to show D Josiah's understanding of cause and effect. When the music stopped, Josiah used his legs to restart the music (this requires moving the middle hanging toy...a green circle). I repositioned the tripod and Josiah proved his ability to utilize his arms for the same purpose. It was very exciting. While on his belly, he utilized many muscles in an effort to move/turn his head. This is a challenge for Josiah, but his proved that he is gaining strength in his neck. D also placed him in a sitting position; he worked hard to keep his head under control.
D was excited about his progress over the last month. She indicated he is (finally) ready for weekly PT. I am THRILLED! Starting next week, Josiah will have PT weekly. He will continue to work with K, weekly, as well. My excitement is overflowing :)
By the end of today's session, Josiah was side-lying, crying, and unable to keep his eyes open. He was exhausted!!! I nursed him for about 5 minutes before he fell fast asleep in my arms. I placed him in his crib at 9:15am. I spent the next FOUR hours getting things done; Finally, at 1:15pm, I woke him. It had been 5.5 hours since he had last eaten. He nursed VERY well, played for awhile, consumed 1.5 ounces of a bottle, and (again) fell fast asleep. I put him down for a nap at 3:30pm.....he remains asleep (it's now 5:30pm).
Tomorrow, he is scheduled for the next Synagis shot. I am, as always, nervous about the weight check. Regardless, I remain optimistic!
I see how far Josiah has come in the past 6 weeks, and I remain in awe. I see his potential. I know all that he will be able to accomplish soon. He is an amazing child. We could not be more blessed that he is ours <3.
As a side note: As I mentioned, yesterday was World Down Syndrome Day. I forgot to mention how we celebrated at 7am......we had ice cream for breakfast.....all of us! I think THAT will be a new tradition :)
Josiah was happy to see his 'girlfriends.' He was playful and engaging with both ladies. While on his back, he happily reached, grabbed, and played with several toys. He demonstrated his ability to raise both arms up the air, simultaneously. He played with his fingers and hands. He sucked on his arm lol. His side-lying was wonderful today. He even showed D his new trick of rolling over onto his belly....she had to help him 'unstick' his arms each time (as they become trapped underneath him). D taught him how to use his leg to return to his back from a side-lying position....he later demonstrated his understanding of the lesson. K and I eagerly pulled out the tripod toy to show D Josiah's understanding of cause and effect. When the music stopped, Josiah used his legs to restart the music (this requires moving the middle hanging toy...a green circle). I repositioned the tripod and Josiah proved his ability to utilize his arms for the same purpose. It was very exciting. While on his belly, he utilized many muscles in an effort to move/turn his head. This is a challenge for Josiah, but his proved that he is gaining strength in his neck. D also placed him in a sitting position; he worked hard to keep his head under control.
D was excited about his progress over the last month. She indicated he is (finally) ready for weekly PT. I am THRILLED! Starting next week, Josiah will have PT weekly. He will continue to work with K, weekly, as well. My excitement is overflowing :)
By the end of today's session, Josiah was side-lying, crying, and unable to keep his eyes open. He was exhausted!!! I nursed him for about 5 minutes before he fell fast asleep in my arms. I placed him in his crib at 9:15am. I spent the next FOUR hours getting things done; Finally, at 1:15pm, I woke him. It had been 5.5 hours since he had last eaten. He nursed VERY well, played for awhile, consumed 1.5 ounces of a bottle, and (again) fell fast asleep. I put him down for a nap at 3:30pm.....he remains asleep (it's now 5:30pm).
Tomorrow, he is scheduled for the next Synagis shot. I am, as always, nervous about the weight check. Regardless, I remain optimistic!
I see how far Josiah has come in the past 6 weeks, and I remain in awe. I see his potential. I know all that he will be able to accomplish soon. He is an amazing child. We could not be more blessed that he is ours <3.
As a side note: As I mentioned, yesterday was World Down Syndrome Day. I forgot to mention how we celebrated at 7am......we had ice cream for breakfast.....all of us! I think THAT will be a new tradition :)
Wednesday, March 21, 2012
A Better Week
I have finally pulled myself out of the 'bummed out' mode, I had slipped into. I had started to pull myself out of that hole. Then, today, I talked to KF (lactation specialist/friend) - it took no time at all to be feeling great again. I always feel better after talking to her :) It was all over the need to supplement feedings with bottles. It seems silly to me but emotions cannot always be explained :)
Josiah has been doing really well. I continue to breastfeed, on-demand. He generally takes 1-2 bottles per day, ranging from 2-4 ounces each. I jumped on the bathroom scale the other day (alone), then again holding him. The difference calculated at 10.6 lbs. So, I'm feeling positive that this week's weight check will produce positive results.
It's been a relatively quiet week. Jesse has been going to school, as usual. He has a field trip tomorrow that he excited about. James has no playgroup this week so it's been an at-home kind of a week. Josiah didn't have EI on Monday; Instead, K & D both come tomorrow. I'm excited for D to see him. She's the physical therapist & I think she will be pleased with his progress. Now, if he could just hold his own head up lol.
Josiah's synagis shot is scheduled for Friday. That's when he will be weighed again; I remain optimistic about those results. Meanwhile, he is alert and playful. He enjoys grabbing at, and grasping, his favorite toys. He continues to roll over from back to belly (oftentimes getting stuck there). He looks less like an infant now. If my eyes do not deceive me, I swear (at times) he looks like he is actually getting a little bit of a belly. These are all good signs that my little heart hero is doing well.
The next two days are sure to be good ones.
Josiah has been doing really well. I continue to breastfeed, on-demand. He generally takes 1-2 bottles per day, ranging from 2-4 ounces each. I jumped on the bathroom scale the other day (alone), then again holding him. The difference calculated at 10.6 lbs. So, I'm feeling positive that this week's weight check will produce positive results.
It's been a relatively quiet week. Jesse has been going to school, as usual. He has a field trip tomorrow that he excited about. James has no playgroup this week so it's been an at-home kind of a week. Josiah didn't have EI on Monday; Instead, K & D both come tomorrow. I'm excited for D to see him. She's the physical therapist & I think she will be pleased with his progress. Now, if he could just hold his own head up lol.
Josiah's synagis shot is scheduled for Friday. That's when he will be weighed again; I remain optimistic about those results. Meanwhile, he is alert and playful. He enjoys grabbing at, and grasping, his favorite toys. He continues to roll over from back to belly (oftentimes getting stuck there). He looks less like an infant now. If my eyes do not deceive me, I swear (at times) he looks like he is actually getting a little bit of a belly. These are all good signs that my little heart hero is doing well.
The next two days are sure to be good ones.
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