DSE to launch new reading and language intervention (original location) - copied below:
DSE will launch a new reading and language intervention for children with Down syndrome in June. This structured programme is designed to teach literacy skills to children with Down syndrome. It has been shown to improve language and reading outcomes in a landmark randomised controlled intervention trial.
The Reading and Language Intervention for Children with Down Syndrome combines reading and language instruction in daily teaching sessions that are designed to meet the particular learning needs of children with Down syndrome. It incorporates work on letter knowledge, phonological awareness, whole word and book reading. In addition to these key components of effective reading interventions, the programme integrates the teaching of vocabulary and connected spoken and written language to help children with Down syndrome overcome some of the challenges associated with their particular language difficulties.
The programme was designed by leading researchers in the fields of reading development and Down syndrome and evaluated in a landmark randomised controlled intervention trial. The trial was funded by the UK Big Lottery Fund and conducted by researchers at Down Syndrome Education International and at the Centre for Reading and Language at the University of York. This study compared the progress of primary/elementary children with Down syndrome receiving the intervention with the progress of children receiving routine reading instruction in inclusive primary school settings in two areas in the United Kingdom. After 20 weeks, children receiving the programme had made significantly more progress on key reading and language outcome measures than children in the control group.
The first scientific paper from the study, reporting the primary trial results, will be published in the first half of 2012. We will also be publishing a web site describing the intervention and study results, a handbook for teachers and teaching assistants detailing how to deliver the intervention, and supplementary resources to support implementation of the program.
Welcome. I was inspired to write this blog while pregnant with my son, Josiah. At 18 weeks gestation, Josiah was diagnosed with Down Syndrome. He had open heart surgery at 3 months and has had RSV twice. He is now 21 months old. He and his two older brothers amaze us everyday. Josiah was not a mistake, nor is he a regret. He is a miracle and the light of our lives. We share with you this beautiful life we have been blessed with.
Monday, April 30, 2012
Sunday, April 29, 2012
A Must See Video: Maddox
This has to be one of the most touching videos I have ever seen. PLEASE take a few moments to watch it :)
http://www.youtube.com/watch?v=hkNzRjXK3hc
Happy Birthday, Maddox <3
http://www.youtube.com/watch?v=hkNzRjXK3hc
Happy Birthday, Maddox <3
Labels:
down syndrome,
DS,
judgment,
labels,
miracle,
T21,
Trisomy 21
Friday, April 27, 2012
End of a Long Week
I'm so glad this week is over. I was glad to have our routine back....but the week was not ideal.
Jesse had a friend over on Tuesday and we all went to playgroup - it was great! Unfortunately, after the friend left, Jesse didn't feel well. He missed school for the rest of the week. His symptoms consisted only of vomiting and diarrhea....once or twice daily; no other symptoms. We've had to work around him being home, and not feeling well. We called the pediatrician today but they suggested we continue to do what we have been doing (keeping him hydrated and feeding him the "brat" diet). My parents are Godsends - they have taken Jesse and James for the night.
James, meanwhile, had his 2nd playgroup on Wednesday & had a blast! He enjoyed his outing with Daddy :)
Yesterday, D & K (EI) came out to work with Josiah. As usual, Josiah was out to impress. He tolerated handling well (he does love being handled by his girlfriends - hahaha) and was cooperative with side-lying. He laid on his belly for an extended time, lifting his head with great determination! D & K are very pleased with his progress over the last couple of weeks.
Josiah's cereal eating continues to go well. He enjoys his rice cereal once/daily. I've called C to update her; I know she is ready to jump in, when needed, for and/all feeding issues.
Today, I was able to do some much-needed errands. The older boys are at my parents house for the night. Carl & I are going to be able to enjoy some 'alone' time (with Josiah, of course).
Right now, the house is quiet. The baby is sleeping. Life is good.
Happy Friday, everyone!!!
Jesse had a friend over on Tuesday and we all went to playgroup - it was great! Unfortunately, after the friend left, Jesse didn't feel well. He missed school for the rest of the week. His symptoms consisted only of vomiting and diarrhea....once or twice daily; no other symptoms. We've had to work around him being home, and not feeling well. We called the pediatrician today but they suggested we continue to do what we have been doing (keeping him hydrated and feeding him the "brat" diet). My parents are Godsends - they have taken Jesse and James for the night.
James, meanwhile, had his 2nd playgroup on Wednesday & had a blast! He enjoyed his outing with Daddy :)
Yesterday, D & K (EI) came out to work with Josiah. As usual, Josiah was out to impress. He tolerated handling well (he does love being handled by his girlfriends - hahaha) and was cooperative with side-lying. He laid on his belly for an extended time, lifting his head with great determination! D & K are very pleased with his progress over the last couple of weeks.
Josiah's cereal eating continues to go well. He enjoys his rice cereal once/daily. I've called C to update her; I know she is ready to jump in, when needed, for and/all feeding issues.
Today, I was able to do some much-needed errands. The older boys are at my parents house for the night. Carl & I are going to be able to enjoy some 'alone' time (with Josiah, of course).
Right now, the house is quiet. The baby is sleeping. Life is good.
Happy Friday, everyone!!!
Labels:
down syndrome,
DS,
EI,
feeding,
physical therapy,
playgroup,
rice cereal,
T21,
Trisomy 21
Friday's Facts 042712: Fun Facts
Fun Facts:
Did you know.....
1 in 5 children with Down Syndrome (DS) play a musical instrument? For children older than 10, that number doubles; 1 out of 5 children with DS sing in a choir or vocal group, for children older than 10, it is 1 out of every 3...
2 out of every 3 children with DS like to draw and/or paint pictures.
Approx. 9 out of every 10 individuals with DS listened to someone read a book more than 3x/week between the ages 2-5.
Approx. 7 out of 10 children w/ DS use total communication (signs, etc) between the ages of 2-5.
Approx. 7 out of 10 kids with DS saw a speech therapist two or more times a week between the ages of 2-5.
Approx. 1 out of every 3 children with DS, older than 10, rides a bike without training wheels.
7 out of every 10 individuals with DS, older than 10, participates on an athletic team through Special Olympics.
2 out of every 5 individuals with DS participates on an integrated athletic team.
According to their families, 3 out of 5 individuals with DS know how to operate a computer.
1 out of every 3 individuals with DS, older than 10, w/ DS reads the daily newspaper on his or her own.
7 out of 10 individuals with DS, older than 10, read books on their own for personal enjoyment.
1 out of 2 children with DS go to school in a mainstreamed class.
3 out of 5 children with DS participate in school activities that are open to all students.
According to their families, 1 of 5 children with DS talk on the phone with friends more than three times a week. For children older than 10, that number doubles.
1 out of 3 children with DS write email regularly.
2 out of 3 children with DS, over age 10, have a boyfriend or girlfriend.
Approx. 7 out of 10 children with DS pray on a regular basis.
According to their families, approx. 7 out of every 10 individuals with DS imitate characters from a television program or movie.
Approx. 2 of 3 individuals with DS, older than 10, prepare their own breakfast each morning.
3 out of 4 individuals with DS, older than 10, make their own bed in the morning.
1 out of 2 individuals with DS, older than 18, work in a non sheltered workplace.
1 out of 5 individuals with DS, 18 or older, lives on his or her own.
2 out of every 3 children with DS like to draw and/or paint pictures.
Approx. 9 out of every 10 individuals with DS listened to someone read a book more than 3x/week between the ages 2-5.
Approx. 7 out of 10 children w/ DS use total communication (signs, etc) between the ages of 2-5.
Approx. 7 out of 10 kids with DS saw a speech therapist two or more times a week between the ages of 2-5.
Approx. 1 out of every 3 children with DS, older than 10, rides a bike without training wheels.
7 out of every 10 individuals with DS, older than 10, participates on an athletic team through Special Olympics.
2 out of every 5 individuals with DS participates on an integrated athletic team.
According to their families, 3 out of 5 individuals with DS know how to operate a computer.
1 out of every 3 individuals with DS, older than 10, w/ DS reads the daily newspaper on his or her own.
7 out of 10 individuals with DS, older than 10, read books on their own for personal enjoyment.
1 out of 2 children with DS go to school in a mainstreamed class.
3 out of 5 children with DS participate in school activities that are open to all students.
According to their families, 1 of 5 children with DS talk on the phone with friends more than three times a week. For children older than 10, that number doubles.
1 out of 3 children with DS write email regularly.
2 out of 3 children with DS, over age 10, have a boyfriend or girlfriend.
Approx. 7 out of 10 children with DS pray on a regular basis.
According to their families, approx. 7 out of every 10 individuals with DS imitate characters from a television program or movie.
Approx. 2 of 3 individuals with DS, older than 10, prepare their own breakfast each morning.
3 out of 4 individuals with DS, older than 10, make their own bed in the morning.
1 out of 2 individuals with DS, older than 18, work in a non sheltered workplace.
1 out of 5 individuals with DS, 18 or older, lives on his or her own.
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
Labels:
bottles,
breastfeeding,
down syndrome,
DS,
EI,
growth chart,
height,
pediatrician,
playgroup,
preschool,
rice cereal,
T21,
Trisomy 21,
weight
Monday, April 23, 2012
Media Monday 042312 'Man in a Bear Suit'
This touching video crossed paths with me, this week. It raises the question...how far must one go to be accepted? If you're 'different,' how must you appear in order to receive acceptance from a stranger? Compassion? Affection?
http://www.youtube.com/watch?v=zFWr-CKMWGY
http://www.youtube.com/watch?v=zFWr-CKMWGY
Labels:
acceptance,
affection,
compassion,
differences,
disability,
love,
media
Friday, April 20, 2012
Friday's Facts 042012: Some Basic Statistics
Some basic statistics:
1. Down Syndrome is also referred to as Trisomy 21. It is caused by an extra 21st chromosome.
2. It is named after John Langdon Down, a British physician who described the syndrome in 1866.
3. Life expectancy for someone with Down Syndrome has increased from 12 years (in 1912) to 60 years. *In March 2012, the Guiness Book of World Records website listed Joyce Greenman, now 87, of London, who was born on 3/14/1925, as the oldest living person with Down Syndrome.
4. 1 in 691 babies, overall, are born with Down Syndrome (0.12%)
<1 in 1000 in women under the age of 30
1 in 400 for women between the ages of 35-40
1 in 110 for women over 40
1 in 25 for women over 45
5. 88% of cases arise from the mother's chromosome 21; 8% arise for the father's chromosome 21; 2% from 'mitotic errors after fusion.'
6. Translocation Down Syndrome occur in 4-5%.
7. 80% of Down Syndrome children are born to women under the age of 35 in the U.S.
8. 40-50% of children with Down Syndrome have cogenital heart defects in the U.S.
9. Having Down Syndrome increases the risk of Leukemia 10-15% in the U.S.
10. 100% of people with Down Syndrome will develop physiological signs of Alzheimer's after the age of 35 in the U.S.
11. In the U.S., it is referred to as "Down Syndrome." In the U.K., it is referred to as "Downs Syndrome."
12. 66-89% of individuals with Down Syndrome have some level of hearing loss in at least one ear.
13. The risk of pneumonia is 62 times higher than in non-Down Syndrome individuals.
14. Seizures occur in 3-13% of individuals with Down Syndrome.
15. There are more than 400,000 people living with Down Syndrome in the U.S.
Labels:
alzheimer's,
birth,
chromosome,
down syndrome,
DS,
heart defect,
John Langdon Down,
Joyce Greenman,
leukemia,
T21,
translocation,
Trisomy 21
Thursday, April 19, 2012
A Slow Gain
It has been a mellow week. While I usually enjoy 'down time,' I'm finding it to be an aggravation this week. I have been bored, 'stir crazy,' and seeking 'something.' It's hard to explain what I'm even looking for.....I'm just feeling a bit unsettled.
Jesse is enjoying April vacation this week. All but one of the EI workers are on vacation. One of the two playgroups are on vacation. So, James has had one playgroup; Josiah has had one EI visit with the feeding specialist C (and shadower D). As usual, he was out to impress his girlfriend(s). Josiah tolerated every task, and met every challenge with his usual determination.
James (and Daddy) attended the one playgroup. James was pleased to have 'his own thing' to do.
In between, Mama has been cleaning, going through things, doing laundry, and trying to keep myself from going insane. I've been dreaming up freecycle pick ups to do, just to pass the time. I even made Josiah's six-month check up for today, just to give me something to do.
Perhaps knowing that Josiah's weight would soon be checked, and the certainty that he did not gain 1oz per day, has had me on edge; I wouldn't be surprised. The end result was this: Josiah weighed in at 11lbs 7.5oz. He gained approximately 1/2oz per day over the last month. "Ideally," we would like to see a 1oz/day weight gain - that just may be unrealistic. Josiah, surprisingly, grew THREE inches over the past 2 months!!! That seemed like a lot - I was pleased. Though the MD would like to see 1oz/day, he seemed satisfied with the current gain....thank goodness!
Meanwhile, my mind has been wandering....I'll keep you posted on where it lands :)
Jesse is enjoying April vacation this week. All but one of the EI workers are on vacation. One of the two playgroups are on vacation. So, James has had one playgroup; Josiah has had one EI visit with the feeding specialist C (and shadower D). As usual, he was out to impress his girlfriend(s). Josiah tolerated every task, and met every challenge with his usual determination.
James (and Daddy) attended the one playgroup. James was pleased to have 'his own thing' to do.
In between, Mama has been cleaning, going through things, doing laundry, and trying to keep myself from going insane. I've been dreaming up freecycle pick ups to do, just to pass the time. I even made Josiah's six-month check up for today, just to give me something to do.
Perhaps knowing that Josiah's weight would soon be checked, and the certainty that he did not gain 1oz per day, has had me on edge; I wouldn't be surprised. The end result was this: Josiah weighed in at 11lbs 7.5oz. He gained approximately 1/2oz per day over the last month. "Ideally," we would like to see a 1oz/day weight gain - that just may be unrealistic. Josiah, surprisingly, grew THREE inches over the past 2 months!!! That seemed like a lot - I was pleased. Though the MD would like to see 1oz/day, he seemed satisfied with the current gain....thank goodness!
Meanwhile, my mind has been wandering....I'll keep you posted on where it lands :)
Labels:
April vacation,
down syndrome,
DS,
EI,
feeding,
T21,
Trisomy 21,
weight
Thursday, April 12, 2012
PT - the BEST session ever!
Josiah had PT this a.m. D's session note reads "the best session ever!" How nice is that?
Josiah & I were up early this a.m. in preparation for D's weekly visit. Josiah was fed and changed. The floor was ready for today's session when D arrived. As usual, she was met with huge smiles. Josiah's 'talking' was superior today. He enjoyed 'talking' to D and each toy he was given. He even 'talked' to the cute baby in the mirror :)
Josiah tolerated side lying today, without the usual fuss. He reached well for toys, grabbing most that interested him. He successfully rolled onto his tummy and proceeded to 'show off' for D. Josiah turned his head from side-to-side with relative ease. This included turning it from R to L, something he has struggled with previously.
While on his tummy, D brought his elbows in; Josiah was able to lift his head to look at Mama (I was lying on my tummy, facing him). We have never seen him lift his head as well as he did today. He didn't just rest his chin on the floor, he had several inches of clearance between his chin and floor. He did this several times. Both D and I almost squealed in delight. Later in the session, Josiah was able to accomplish this task again - while facing the mirror.
Josiah tolerated sitting up very well today (while being supported by D). Josiah was able to keep his head up independently for about 10-15 seconds. He's still my little bobble-head, but his neck muscles are clearly getting stronger. Josiah successfully balanced his own head numerous times, each for 10-15 seconds. We were thrilled to see this accomplishment.
While sitting, Josiah reached for toys - grabbing several. He really enjoyed his musical gym today. It was the much needed toy, about 40 minutes into the session. He turned his head several times, to look at D, while balancing his own head. Despite growing weary, I think he was proud of himself. I know we were proud of him <3
Josiah lasted a total of 1 hour 5 minutes (only 10 minutes shy of the complete session). He was exhausted and happy to be in Mama's arms. After nursing for about 3 minutes, he fell fast asleep :) I expect he'll be asleep for a while.
I can't wait to update K on today's exciting session. I know she will be thrilled!
Next week, D & K are on vacation. Carl & I will be sure to continue to work with Josiah so he doesn't lose any ground. He is an amazing little boy. His strength and determination are overwhelming! He will clearly accomplish anything he sets his mind to. We are so proud of him.
Josiah & I were up early this a.m. in preparation for D's weekly visit. Josiah was fed and changed. The floor was ready for today's session when D arrived. As usual, she was met with huge smiles. Josiah's 'talking' was superior today. He enjoyed 'talking' to D and each toy he was given. He even 'talked' to the cute baby in the mirror :)
Josiah tolerated side lying today, without the usual fuss. He reached well for toys, grabbing most that interested him. He successfully rolled onto his tummy and proceeded to 'show off' for D. Josiah turned his head from side-to-side with relative ease. This included turning it from R to L, something he has struggled with previously.
While on his tummy, D brought his elbows in; Josiah was able to lift his head to look at Mama (I was lying on my tummy, facing him). We have never seen him lift his head as well as he did today. He didn't just rest his chin on the floor, he had several inches of clearance between his chin and floor. He did this several times. Both D and I almost squealed in delight. Later in the session, Josiah was able to accomplish this task again - while facing the mirror.
Josiah tolerated sitting up very well today (while being supported by D). Josiah was able to keep his head up independently for about 10-15 seconds. He's still my little bobble-head, but his neck muscles are clearly getting stronger. Josiah successfully balanced his own head numerous times, each for 10-15 seconds. We were thrilled to see this accomplishment.
While sitting, Josiah reached for toys - grabbing several. He really enjoyed his musical gym today. It was the much needed toy, about 40 minutes into the session. He turned his head several times, to look at D, while balancing his own head. Despite growing weary, I think he was proud of himself. I know we were proud of him <3
Josiah lasted a total of 1 hour 5 minutes (only 10 minutes shy of the complete session). He was exhausted and happy to be in Mama's arms. After nursing for about 3 minutes, he fell fast asleep :) I expect he'll be asleep for a while.
I can't wait to update K on today's exciting session. I know she will be thrilled!
Next week, D & K are on vacation. Carl & I will be sure to continue to work with Josiah so he doesn't lose any ground. He is an amazing little boy. His strength and determination are overwhelming! He will clearly accomplish anything he sets his mind to. We are so proud of him.
Wednesday, April 11, 2012
Easter time 2012
We packed up on Saturday morning, and headed out to meet our new friends. We gathered at the family's home. Carl & I met a lot of great folks - all whom have a child with DS. We met a lot of great kids. Lunch was fabulous! The company was wonderful. The Easter Egg Hunt in their beautiful back yard was a smashing success. The Easter Bunny even stopped by for pictures, etc. Jesse and James had a riot collecting their Easter eggs. They played on the climbing structure, with various toys, enjoyed rides in a wagon, and hugged the Easter bunny. After a few hours, we said good bye to our new friends and headed home.
Jesse and James were soon off, again, to their grandparents house. There, they spent the remainder of the day cooking goodies for Sunday's get-together. Carl and I spent most of our day cleaning and preparing for Sunday.
Sunday went smoothly. Everyone came to our house. We all had a nice day. The older boys had fun with their Uncle T & Auntie A. Josiah did what babies do....ate, slept, and enjoyed being cuddled :)
On Monday, K returned to work with Josiah. As usual, he enjoyed seeing his 'girlfriend.' He happily worked with K for the duration. Josiah is demonstrating more and more strength every day. He turns his head from side-to-side, more readily now, while on his tummy. His determination continues to be obvious. He is such a little trooper. After his session, it was James turn.
K met with James for his session. C joined the team this week. C will be working with James, weekly, on his speech. K will continue to work with James, weekly, as well. James loves the extra attention. K is met with squeals of delight, each time. I imagine C will start to experience a similar tradition soon :)
Tuesday had us all returning to the afternoon playgroup; the boys received their "Raising a Reader" book bags. They were very excited.
James had his other playgroup this a.m. Carl and I had planned on bringing James and Josiah to that. Unfortunately, Josiah didn't cooperate with feeding this a.m. So, at the last minute, Carl & James left for playgroup alone. I stayed home with Josiah. I'm still not sure why he was refusing to nurse. He had nursed on one side earlier; the second side, he didn't want any part of. I finally made a bottle which he quickly consumed. He then fell fast asleep. He slept for 4 hours. When he awoke, all was fine again. He has fed well for the rest of the day and evening.
Tomorrow, D comes to work with Josiah. James will be enrolled in preschool, for next year. Then, we are attending a family night at Jesse's school. Friday, we have no plans. I hope to keep it that way....it'll be a much appreciated break.
Jesse and James were soon off, again, to their grandparents house. There, they spent the remainder of the day cooking goodies for Sunday's get-together. Carl and I spent most of our day cleaning and preparing for Sunday.
Sunday went smoothly. Everyone came to our house. We all had a nice day. The older boys had fun with their Uncle T & Auntie A. Josiah did what babies do....ate, slept, and enjoyed being cuddled :)
On Monday, K returned to work with Josiah. As usual, he enjoyed seeing his 'girlfriend.' He happily worked with K for the duration. Josiah is demonstrating more and more strength every day. He turns his head from side-to-side, more readily now, while on his tummy. His determination continues to be obvious. He is such a little trooper. After his session, it was James turn.
K met with James for his session. C joined the team this week. C will be working with James, weekly, on his speech. K will continue to work with James, weekly, as well. James loves the extra attention. K is met with squeals of delight, each time. I imagine C will start to experience a similar tradition soon :)
Tuesday had us all returning to the afternoon playgroup; the boys received their "Raising a Reader" book bags. They were very excited.
James had his other playgroup this a.m. Carl and I had planned on bringing James and Josiah to that. Unfortunately, Josiah didn't cooperate with feeding this a.m. So, at the last minute, Carl & James left for playgroup alone. I stayed home with Josiah. I'm still not sure why he was refusing to nurse. He had nursed on one side earlier; the second side, he didn't want any part of. I finally made a bottle which he quickly consumed. He then fell fast asleep. He slept for 4 hours. When he awoke, all was fine again. He has fed well for the rest of the day and evening.
Tomorrow, D comes to work with Josiah. James will be enrolled in preschool, for next year. Then, we are attending a family night at Jesse's school. Friday, we have no plans. I hope to keep it that way....it'll be a much appreciated break.
Labels:
breastfeeding,
down syndrome,
DS,
Easter,
EI,
playgroup,
preschool,
PT,
speech,
T21,
Trisomy 21
Friday, April 6, 2012
PT, Weight, and Cardiology
Josiah's PT appointment, yesterday, was another success. He met D with huge smiles. He was happy to demonstrate his tricks for her, again. He recognizes certain things as being 'work', thus is more apt to complain during the session. He is making huge strides every week. We need to continue to work on his head control. His arms/legs are making significant improvements each week. It's fun to watch him accomplish new goals.
Josiah had his cardiology appointment this morning. As planned, I woke him early to nurse him. Then, I offered him a bottle of high-calorie formula. He drank 2 oz before it was time to leave.
He slept on the way to the MD. He was in a good mood upon arrival. After the usual check in and EKG, they brought the scale in. 11lbs 2oz. I had estimated an 'ideal' weight of 11lbs 4.5oz for this a.m. We were only 2.5oz off....I'm elated! It was so much better than I feared.
The cardiologist is wonderful and he is thrilled with Josiah's progress. Josiah's heart is no longer a concern. Josiah doesn't need to be seen again for six months. The appointments are backing off....a sure sign of improvement. We are so thankful.
Meanwhile, today is day 4 of my new no-smoking campaign. I'm shocked by how easy this has been. I've known, for a long time, that I was ready to quit. I knew "cutting down" would never work for me. I knew it would be an "all or nothing" approach. This has played out well. I have no physical cravings. I have 2 or 3 "psychological/behavioral" cravings per day. They only last mere moments; I am able to easily redirect myself. After 27 yrs of smoking, believing it was going to be this easy would have seemed delusional. I am so thankful for the reality.
Tomorrow, we will join a new group of friends (all of whom are blessed with a child with DS), for an Easter Egg hunt & lunch. The siblings are all coming too. I'm really looking forward to meeting our new friends.
Sunday, family is coming here to celebrate Easter. I remain in awe of the miracles that have blessed my family. I remain thankful.....to so many.....for so much <3
Josiah had his cardiology appointment this morning. As planned, I woke him early to nurse him. Then, I offered him a bottle of high-calorie formula. He drank 2 oz before it was time to leave.
He slept on the way to the MD. He was in a good mood upon arrival. After the usual check in and EKG, they brought the scale in. 11lbs 2oz. I had estimated an 'ideal' weight of 11lbs 4.5oz for this a.m. We were only 2.5oz off....I'm elated! It was so much better than I feared.
The cardiologist is wonderful and he is thrilled with Josiah's progress. Josiah's heart is no longer a concern. Josiah doesn't need to be seen again for six months. The appointments are backing off....a sure sign of improvement. We are so thankful.
Meanwhile, today is day 4 of my new no-smoking campaign. I'm shocked by how easy this has been. I've known, for a long time, that I was ready to quit. I knew "cutting down" would never work for me. I knew it would be an "all or nothing" approach. This has played out well. I have no physical cravings. I have 2 or 3 "psychological/behavioral" cravings per day. They only last mere moments; I am able to easily redirect myself. After 27 yrs of smoking, believing it was going to be this easy would have seemed delusional. I am so thankful for the reality.
Tomorrow, we will join a new group of friends (all of whom are blessed with a child with DS), for an Easter Egg hunt & lunch. The siblings are all coming too. I'm really looking forward to meeting our new friends.
Sunday, family is coming here to celebrate Easter. I remain in awe of the miracles that have blessed my family. I remain thankful.....to so many.....for so much <3
Labels:
cardiologist,
cardiology,
down syndrome,
DS,
Easter,
PT,
smoking,
T21,
Trisomy 21,
weight
Thursday, April 5, 2012
Waging the Weight Battle
So, it occurred to me that Josiah will be weighed in the morning. This is routine during his cardiology visits. I tossed him on the scale today....10lbs 11.5oz. Are you serious? I feel like the last two weeks has been a series of experiments gone wrong lol. I had stopped supplementing; that came back to bite me in the butt. I'd gotten lazy about pumping; I need to make an extra effort now. I've been letting Josiah sleep at night (generally 9pm until 7am); I will resume the midnight wake-up/feedings. Given that he weighed 10lbs 6.5oz 2 wks ago, he should "ideally" weigh 11lbs 4.5oz tomorrow morning. UGH!!! This continues to be a huge frustration for me. I cannot wait until we're at the point where we can relax for a minute without the fear of the "weight thing." So, I'll give him a few extra bottles tonight, in the a.m., and hope for the best. I'll fix the aforementioned things, in the meanwhile.
Tomorrow's cardiology appointment should be a breeze. Josiah is doing great post-surgery! We anticipate no problems or surprises. We just need to fix the weight issue before we see the pediatrician again :>
I think it's time to touch base with KF again. Soon.....this is driving me CRAZY :)
Tomorrow's cardiology appointment should be a breeze. Josiah is doing great post-surgery! We anticipate no problems or surprises. We just need to fix the weight issue before we see the pediatrician again :>
I think it's time to touch base with KF again. Soon.....this is driving me CRAZY :)
Labels:
cardiology,
down syndrome,
DS,
OHS,
surgery,
T21,
Trisomy 21,
weight
Tuesday, April 3, 2012
Just an Average Tuesday
My decision, yesterday, to quit smoking had not come without consideration and contemplation. It was years of thought thrust into a split-second decision. I gave myself the rest of Monday to smoke. It was understood, I would not smoke today. And so it has happened. I had my last cigarette at 12:30am, just before retiring for the night. I haven't had one since. It's been 21.5 hours, and counting. So far, so good.
Yesterday, Jesse had school as usual. James had fun with EI. K's arrival was met with squeals of delight. Today, the children returned to playgroup; it meets in the afternoon now, so even Jesse can join in. They all enjoyed that which has become so familiar.
Tomorrow, James starts a new EI group. Josiah will tag along, as the baby brother. I'm looking forward to seeing how he reacts to a new group. K will return in the afternoon to work with Josiah - something I really look forward to. Jesse and Daddy have an outing tomorrow night. On Thursday, Josiah will work with D. Friday, he has his next cardiology appointment.
I'm trying to keep track of Josiah's weight, from home. I finally set up the new baby scale. I weighed him on Sunday. 10lbs 10oz. He had weighed 10lbs 6.5oz, 9 days previously. Ideally, he would have weighed 10lbs 15oz. We're about 5oz off. I had stopped fortifying his bottles; I immediately resumed the fortification process. Yesterday, I weighed him but it was later in the day...11lbs even. He had just eaten. I just realized that he'll be weighed on Friday (at the cardiologist), so I'll try to make sure his weight is "up there" before we go lol.
So, all in all - no big deal. Ongoing weight checks, EI, PT, playgroups, preschool, cardiology, and quit smoking. No problem! :)
Yesterday, Jesse had school as usual. James had fun with EI. K's arrival was met with squeals of delight. Today, the children returned to playgroup; it meets in the afternoon now, so even Jesse can join in. They all enjoyed that which has become so familiar.
Tomorrow, James starts a new EI group. Josiah will tag along, as the baby brother. I'm looking forward to seeing how he reacts to a new group. K will return in the afternoon to work with Josiah - something I really look forward to. Jesse and Daddy have an outing tomorrow night. On Thursday, Josiah will work with D. Friday, he has his next cardiology appointment.
I'm trying to keep track of Josiah's weight, from home. I finally set up the new baby scale. I weighed him on Sunday. 10lbs 10oz. He had weighed 10lbs 6.5oz, 9 days previously. Ideally, he would have weighed 10lbs 15oz. We're about 5oz off. I had stopped fortifying his bottles; I immediately resumed the fortification process. Yesterday, I weighed him but it was later in the day...11lbs even. He had just eaten. I just realized that he'll be weighed on Friday (at the cardiologist), so I'll try to make sure his weight is "up there" before we go lol.
So, all in all - no big deal. Ongoing weight checks, EI, PT, playgroups, preschool, cardiology, and quit smoking. No problem! :)
Labels:
cardiology,
down syndrome,
DS,
EI,
PT,
smoking,
T21,
Trisomy 21,
weight
Monday, April 2, 2012
Addiction and Contradiction
My oldest brother, Scott, died in September of an accidental drug overdose. Addiction had plagued him for years/decades. I never understood why it had such a hold on him. His personality seemed to predispose him to such things. Alcohol was my brother's drug of choice. It was the constant. He dappled in cocaine, etc, but 'booze' provided the daily grounding he seemed so desperate for.
Being ten years older than me, I honestly don't remember Scott 'before booze.' He was drinking by the time he was 15; I was 5. As the years passed, I started seeing the negative impact it was having on his life. He was an abusive 'drunk.' He didn't work (to speak of). He used, and abused, my parents. He abused his wife. He lost the few things he had managed to acquire in his alcohol-controlled life. He burnt all bridges.
My brother, with his sparkling eyes, ended up alone and homeless. He was in and out of rehab on countless occasions but he always returned to his life on the streets. That is where he died. On the streets, he finally found peace.
I think back to our talks. We were close. I used to say we were "twins born ten years apart." I could sense things about Scott, even when he lived hundreds of miles away. I could sense trouble. I knew when things were going to go wrong. I tried everything I could to help him (as did most of his family and friends). We talked, frankly, about addiction. By the end, I was angry about his addiction. I was angry that he continued to choose to use. I knew this thing would take my oldest brother away from me. Last summer (2010), I told my husband, and sister, "Scott will be dead in a year." I can't explain why, but I knew. I knew he would be dead in a year. Less than 14 months later, we buried him.
I gave Scott a lot of strife, over the years, about his drinking. All the while, I smoked cigarettes (and still do). It somehow seemed different. He was mean when he drank. I don't get mean when I smoke. I guess that's why it never seemed to be a contradiction for me. As I think about it now, I was fighting to save his life. It wasn't about him simply drinking; it wasn't about being mean when he drank. It was about wanting him to stay alive. Now it's my turn. I won't be a hypocrite.
I started smoking when I was 14. I've smoked almost twice as long. I need to let go of my addiction to cigarettes. I wanted Scott to be a part of our family (in the last few years, he was restricted due to his unpredictable/volatile behavior). I, too, want to be a part of my own family.....for many years to come. I don't want something as stupid as cigarettes to take me away from the people I love the most. Therefore, today is my last day with this vice. When I wake up tomorrow, it will be without the need to utilize something which could ultimately kill me.
My brother's addiction killed him. I will do everything in my power to make sure I learn from the lesson of watching him. I will not allow my parents to bury me over nonsense.
Tomorrow, and each day after that, I will be smoke-free.
(I love you, Scott <3)
Being ten years older than me, I honestly don't remember Scott 'before booze.' He was drinking by the time he was 15; I was 5. As the years passed, I started seeing the negative impact it was having on his life. He was an abusive 'drunk.' He didn't work (to speak of). He used, and abused, my parents. He abused his wife. He lost the few things he had managed to acquire in his alcohol-controlled life. He burnt all bridges.
My brother, with his sparkling eyes, ended up alone and homeless. He was in and out of rehab on countless occasions but he always returned to his life on the streets. That is where he died. On the streets, he finally found peace.
I think back to our talks. We were close. I used to say we were "twins born ten years apart." I could sense things about Scott, even when he lived hundreds of miles away. I could sense trouble. I knew when things were going to go wrong. I tried everything I could to help him (as did most of his family and friends). We talked, frankly, about addiction. By the end, I was angry about his addiction. I was angry that he continued to choose to use. I knew this thing would take my oldest brother away from me. Last summer (2010), I told my husband, and sister, "Scott will be dead in a year." I can't explain why, but I knew. I knew he would be dead in a year. Less than 14 months later, we buried him.
I gave Scott a lot of strife, over the years, about his drinking. All the while, I smoked cigarettes (and still do). It somehow seemed different. He was mean when he drank. I don't get mean when I smoke. I guess that's why it never seemed to be a contradiction for me. As I think about it now, I was fighting to save his life. It wasn't about him simply drinking; it wasn't about being mean when he drank. It was about wanting him to stay alive. Now it's my turn. I won't be a hypocrite.
I started smoking when I was 14. I've smoked almost twice as long. I need to let go of my addiction to cigarettes. I wanted Scott to be a part of our family (in the last few years, he was restricted due to his unpredictable/volatile behavior). I, too, want to be a part of my own family.....for many years to come. I don't want something as stupid as cigarettes to take me away from the people I love the most. Therefore, today is my last day with this vice. When I wake up tomorrow, it will be without the need to utilize something which could ultimately kill me.
My brother's addiction killed him. I will do everything in my power to make sure I learn from the lesson of watching him. I will not allow my parents to bury me over nonsense.
Tomorrow, and each day after that, I will be smoke-free.
(I love you, Scott <3)
Sunday, April 1, 2012
A New Venture :)
I made the decision to start creating/selling merchandise to raise awareness for Down Syndrome. Bumper stickers & Magnets are available immediately. They are $10 and $5, respectively. Shipping is free.
I'm just now getting it off the ground, so please bear with me. LOTS of great stuff will be added soon. In the meanwhile, please check out my ebay storefront & show your support <3
http://stores.ebay.com/Up-the-Down-Staircase
I'm just now getting it off the ground, so please bear with me. LOTS of great stuff will be added soon. In the meanwhile, please check out my ebay storefront & show your support <3
http://stores.ebay.com/Up-the-Down-Staircase
Labels:
bumper stickers,
down syndrome,
DS,
ebay,
magnets,
Trisomy 21
PT Visit, 'Mama,' and Eating
This has been a great week.
D came out on Thursday to work with Josiah on PT. He continues to impress. I woke him at 7am, fed him, changed him, and prepared the floor for their session. D's prompt arrival was met with smiles and vocalizations. Josiah did very well with his side-lying this week. He reached for toys, grasping them with his little hands. He made a lot of eye contact with D, me (every time I accidentally came into view), and Jesse (who was getting ready for school). He demonstrated great tummy time, working hard to gain muscle control in his neck. He still gets very frustrated while on his tummy. He wants to do it all; he becomes frustrated when his little body doesn't cooperate. When on his belly, he particularly enjoys his head being turned to the right. He gets angry when D tries turning it to the left. It is while his head is turned to the left that he demonstrates his determination. He lifts his head, if ever so slightly, and uses his left hand to turn his head back to the right lol.
About 30 minutes into the session, he neared "meltdown-mode." He was frustrated from working so hard. Luckily, we engaged him with a favorite toy and he was able to settle down quickly. He cooperatively worked for another 30 minutes. It was a great session; we were thrilled.
During the earlier part of the week, I believed that Josiah had said "Mama" twice. I also knew my own hopes could be swaying my perception. Thursday morning, he proved that my perception was accurate. While working with D, I crossed the room; He quickly spotted me. He looked at me and, very deliberately, said "Mama." I was thrilled to hear that word. It was one of those "heart melting" moments.
Josiah continues to nurse well. I was becoming frustrated, again, regarding the need for supplementation. Yet, I know that the we cannot lose ground with the weight-gain battle, we fought so hard to win. I stopped fortifying Josiah's bottles the other day. I want to see how well he does without the extra calories. He continues to get bottles of breast milk or formula, they are just not "fortified." Meanwhile, I continue my quest to increase my own supply of milk. Yesterday, I had a mere flash of a memory regarding oatmeal. While attempting to nurse Jesse, five years ago, I read that oatmeal could assist in increasing milk supply. How had I forgotten that? One quick search in a newly purchased book confirmed the memory. So, last night, I made oatmeal cookies. Carl & I enjoyed quite a few of them, right out of the oven. Perhaps, it's just wishful thinking; Perhaps, it's a self-fulfilling prophesy. All I know is that my supply showed improvement today. I just made oatmeal muffins. If it works, don't fix it; Right?
I bought a baby scale; it arrived yesterday. I will set it up on Sunday, and see where we stand. I hope ceasing the fortifying doesn't come back to bite me (or Josiah) in the butt. I don't think it will. I think he's gained weight; he feels like he gained weight. I'll have a better sense tomorrow. Fingers are crossed :)
D came out on Thursday to work with Josiah on PT. He continues to impress. I woke him at 7am, fed him, changed him, and prepared the floor for their session. D's prompt arrival was met with smiles and vocalizations. Josiah did very well with his side-lying this week. He reached for toys, grasping them with his little hands. He made a lot of eye contact with D, me (every time I accidentally came into view), and Jesse (who was getting ready for school). He demonstrated great tummy time, working hard to gain muscle control in his neck. He still gets very frustrated while on his tummy. He wants to do it all; he becomes frustrated when his little body doesn't cooperate. When on his belly, he particularly enjoys his head being turned to the right. He gets angry when D tries turning it to the left. It is while his head is turned to the left that he demonstrates his determination. He lifts his head, if ever so slightly, and uses his left hand to turn his head back to the right lol.
About 30 minutes into the session, he neared "meltdown-mode." He was frustrated from working so hard. Luckily, we engaged him with a favorite toy and he was able to settle down quickly. He cooperatively worked for another 30 minutes. It was a great session; we were thrilled.
During the earlier part of the week, I believed that Josiah had said "Mama" twice. I also knew my own hopes could be swaying my perception. Thursday morning, he proved that my perception was accurate. While working with D, I crossed the room; He quickly spotted me. He looked at me and, very deliberately, said "Mama." I was thrilled to hear that word. It was one of those "heart melting" moments.
Josiah continues to nurse well. I was becoming frustrated, again, regarding the need for supplementation. Yet, I know that the we cannot lose ground with the weight-gain battle, we fought so hard to win. I stopped fortifying Josiah's bottles the other day. I want to see how well he does without the extra calories. He continues to get bottles of breast milk or formula, they are just not "fortified." Meanwhile, I continue my quest to increase my own supply of milk. Yesterday, I had a mere flash of a memory regarding oatmeal. While attempting to nurse Jesse, five years ago, I read that oatmeal could assist in increasing milk supply. How had I forgotten that? One quick search in a newly purchased book confirmed the memory. So, last night, I made oatmeal cookies. Carl & I enjoyed quite a few of them, right out of the oven. Perhaps, it's just wishful thinking; Perhaps, it's a self-fulfilling prophesy. All I know is that my supply showed improvement today. I just made oatmeal muffins. If it works, don't fix it; Right?
I bought a baby scale; it arrived yesterday. I will set it up on Sunday, and see where we stand. I hope ceasing the fortifying doesn't come back to bite me (or Josiah) in the butt. I don't think it will. I think he's gained weight; he feels like he gained weight. I'll have a better sense tomorrow. Fingers are crossed :)
Labels:
breastfeeding,
down syndrome,
DS,
EI,
first word,
PT,
T21,
Trisomy 21
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