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!!!
Friday, April 27, 2012
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
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
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.
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 :)
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.
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