Oh how I love this boy....:) Kayde is now 9 1/2 months ( 7 months adjusted ). So everyone knows kids set there own time line on when they are going to do things an learn new things, that I know yes. An yes Kayde will get there on his own time too, that I also know. He is doing great don't get me wrong, an is amazing and I am so proud of him. He works very hard everyday. I am reminded all the time he will reach his milestones just a little later then others. So I have tried very hard to adjust myself to that, my big goal for Kayde is to be sitting independently for his birthday. Lately I have been feeling down and feeling like we are not going to reach that goal. I know we have a few months still and I also know he is not really 1 or is not corrected age 1 until end of April, I feel guilty for feeling it but I feel I will be disappointed if he is not, not disappointed with him but disappointed within myself. If that makes sense??
Kayde and I have been working very hard developing core/trunk muscles. Lots of sitting on floor supporting hips and back, sitting on exercise ball rocking all directions working against gravity, also using Bumbo with tray. Last week at PT our therapist recommended using a block for Kayde to weight bear his hands on, so he wasn't bent right over looking at floor. OMG what a difference, an of course it would be but I had never thought about it. So need-less
to say it has done wonders with Kayde in just 2 weeks. He has reached his all time record as of yesterday sitting 45 sec all on his own weight bearing on the block in front of him....YYYYYYAAAAAAYYYYY!!!!! I can't even begin to tell you the joy I feel for this small but big progress forward. To see my lil man sitting looking up at me with that whole face smile knowing mommy is so proud of him..:) is priceless. I know as each day passes Kayde is gonna get stronger and better and my goal for him suddenly doesn't seem so far away. Kayde from day one has been the boss of himself when it comes to what he is gonna do, how he's gonna do it and when he's gonna do it and I should know by now just as I think other wise he proves me wrong every time. :) Thank you for that Kayde.
Tuesday, December 20, 2011
19 Reasons Why Mothers Of Special Needs Rock!!!!
I did not write this...but wish I did.
1. Because doctors have told us the worst, and we've refused to believe them. TAKE THAT, nay-saying doctors of the world.
2. Because we’ve discovered patience we never knew we had.
3. Because we... are willing to do something 10 times, 100 times, 1,000 times if that’s what it takes for our kids to learn something new.
4. Because we never imagined that “doing it all” would mean doing this much. But we do it all, and then some.
5. Because we have bad days and breakdowns and bawl-fests, and then we pick ourselves up and keep right on going.
6. Because we gracefully handle the stares, the comments, the rude remarks. Well, mostly gracefully.
7. Because we manage to get ourselves together and get out the door looking pretty damn good. Heck, we even make sweatpants look good.
8. Because we are strong. Man, are we strong. Who knew we could be this strong?
9. Because we aren’t just moms, wives, cooks, cleaners, chauffeurs, women who work. We are moms, wives, cooks, cleaners, chauffeurs, women who work, physical therapists, speech therapists, occupational therapists, teachers, researchers, nurses, coaches, and cheerleaders. Whew.
10. Because we work overtime every single day.
11. Because we also worry overtime, but we work it through. Or we eat chocolate or Pirate's Booty or gourmet cheese, which aren't reimbursable by insurance as mental-health necessities but should be.
12. Because we are more selfless than other moms. Our kids need us more.
13. Because we give our kids with special needs endless love, and then we still have so much love left for our other kids, our husbands, our family. And our hairstylist, of course.
14. Because we inspire one another in this crazy blogosphere every single day.
15. Because we understand our kids better than anyone else—even if they can’t talk, even if they can’t gesture, even if they can't look us in the eye. We know. We just know.
16. Because we never stop pushing for our kids.
17. Because we never stop hoping for them, either.
18. Because just when it seems like things are going OK, they're suddenly not OK, but we deal. Somehow, we always deal, even when it seems like our heads or hearts might explode.
19. Because when we look at our kids we just see great kids. Not "kids with cerebral palsy/autism/Down syndrome/developmental delays/whatever label."
Thank you to whom ever this piece belongs too!!! Great job.
1. Because doctors have told us the worst, and we've refused to believe them. TAKE THAT, nay-saying doctors of the world.
2. Because we’ve discovered patience we never knew we had.
3. Because we... are willing to do something 10 times, 100 times, 1,000 times if that’s what it takes for our kids to learn something new.
4. Because we never imagined that “doing it all” would mean doing this much. But we do it all, and then some.
5. Because we have bad days and breakdowns and bawl-fests, and then we pick ourselves up and keep right on going.
6. Because we gracefully handle the stares, the comments, the rude remarks. Well, mostly gracefully.
7. Because we manage to get ourselves together and get out the door looking pretty damn good. Heck, we even make sweatpants look good.
8. Because we are strong. Man, are we strong. Who knew we could be this strong?
9. Because we aren’t just moms, wives, cooks, cleaners, chauffeurs, women who work. We are moms, wives, cooks, cleaners, chauffeurs, women who work, physical therapists, speech therapists, occupational therapists, teachers, researchers, nurses, coaches, and cheerleaders. Whew.
10. Because we work overtime every single day.
11. Because we also worry overtime, but we work it through. Or we eat chocolate or Pirate's Booty or gourmet cheese, which aren't reimbursable by insurance as mental-health necessities but should be.
12. Because we are more selfless than other moms. Our kids need us more.
13. Because we give our kids with special needs endless love, and then we still have so much love left for our other kids, our husbands, our family. And our hairstylist, of course.
14. Because we inspire one another in this crazy blogosphere every single day.
15. Because we understand our kids better than anyone else—even if they can’t talk, even if they can’t gesture, even if they can't look us in the eye. We know. We just know.
16. Because we never stop pushing for our kids.
17. Because we never stop hoping for them, either.
18. Because just when it seems like things are going OK, they're suddenly not OK, but we deal. Somehow, we always deal, even when it seems like our heads or hearts might explode.
19. Because when we look at our kids we just see great kids. Not "kids with cerebral palsy/autism/Down syndrome/developmental delays/whatever label."
Thank you to whom ever this piece belongs too!!! Great job.
Wednesday, December 7, 2011
DSA Christmas Party
I am so excited we went. It was our 1st time meeting other family's in our area. Until Sunday all you online mommas is all I knew, which has taught me so much and gotten me where I am today, I thank you all for your support/advice/ and your real life stories. I was truly needing some real interaction with other families. Feeling nervous and so excited at the same time the whole family headed off to the Christmas party. Deep breathe here we go...we were greeted instantly by (D) who earlier in week came out to meet us and had invited us. They had swimming 1st followed by singing and visit from Santa. Kayde loved the water, he was so cute splashing and laughing at himself. :) After swimming it wasn't minute's after entering the party area Kayde had every one's attention. Everyone was so welcoming and nice and just adored Kayde. I feel so very blessed to be part of the DS community it is surely full of wonderful people. I instantly connected with quite a few moms, it's so nice to have some one to talk to that truly knows how I feel and what we go through. I got lots of numbers/ email for future contact as well as quite a few babysitting offers...lol. It was a great experience for all of us. I can't wait to meet up with my new mom friends for play dates and chats. I left feeling so good and inspired.
All tired out after getting so many snuggles!!! Thanks mommies :)
Tuesday, November 22, 2011
Thursday, November 17, 2011
Prematurity Awareness Day
Who knew they had a Prematurity Awareness Day??? Well I was not aware until few weeks ago. So with that I will being to raise awareness. If you are here reading this then you obviously can see from my page my son Kayde was a preemie. Born 10 weeks early @ 30 weeks gestation. Weighing 3lbs. and only 15 inches long.
Having 2 full term pregnacies before Kayde, I really didn't know anything about having a premautre baby. Nothing about NICU life, caring for such a tiny baby, the risks of health problems and all that comes with tiny little one's who enter life too early. The highlighted pruple parts are what we experienced.
What Is A Premautre Baby???
- Babies born less than 37 weeks gestation (after conception) is considered premature.
- Babies born with a birth weight of less than (<) 1000 grams are considered to have an extremely low birth weight, (ELBW).
- Babies who weigh between 1000 grams and <1500 grams are considered to be very low birth weight (VLBW).
- Babies born between 1500 grams and less than 2500 grams are considered to be low birth weight (LBW).
Causes:
If a woman goes into labor before 37 weeks, it is called preterm labor. Often, the cause of preterm labor is unknown. Multiple pregnancy (twins, triplets, etc.) makes up about 15% of all premature births.
Health conditions and events in the mother may contribute to preterm labor. Examples are:
Other factors that make preterm labor and a premature delivery more likely include:
Premature infant's organs are not fully developed. Infant needs special care in a nursery until the organ systems have developed enough to sustain life without medical support. This may take weeks to months.
Premature infant will have a lower birth weight than a full-term infant. Common physical signs of prematurity include:
Exams and Test:
Your baby may have difficulty breathing and maintaining body temperature.
Common tests performed on a premature infant include:
When premature labor develops and cannot be stopped, the health care team will prepare for a high-risk birth. You may be moved to a center that specifically cares for premature infants in, for example, a neonatal intensive care unit (NICU).
After birth, the baby is admitted to a high-risk nursery. The infant is placed under a warmer or in a clear, heated box called an incubator, which controls the air temperature. Monitoring machines track the baby's breathing, heart rate, and level of oxygen in the blood.
Infants are usually unable to coordinate sucking and swallowing before 34 weeks gestation. Therefore, the baby may have a small, soft feeding tube placed through the nose or mouth into the stomach. In very premature or sick infants, nutrition may be given through a vein until the baby is stable enough to receive all nutrition in the stomach. (See: Neonatal weight gain and nutrition)
If the infant has breathing problems:
Outlook (Prognosis):
Prematurity used to be a major cause of infant deaths. Improved medical and nursing techniques have increased the survival of premature infants. The longer the pregnancy, the greater the chance of survival. Of babies born at 28 weeks, at least 90% survive.
Prematurity can have long-term effects. Many premature infants have medical, developmental, or behavioral problems that continue into childhood or are permanent. The more premature an infant and the smaller the birth weight, the greater the risk of complications. However, it is impossible to predict a baby's long-term outcome based on gestational age or birth weight.
Possible Complications:
Possible complications that may occur while in the hospital include:
One of the most important steps to preventing prematurity is to receive prenatal care as early as possible in the pregnancy, and to continue such care until the baby is born. Statistics clearly show that early and good prenatal care reduces the chance of premature birth.
Premature labor can sometimes be treated or delayed by a medication that blocks uterine contractions. Many times, however, attempts to delay premature labor are not successful.
Betamethasone (a steroid medication) given to mothers in premature labor can reduce the severity of some of the prematurity complications on the baby.
I will defentaly be blogging more on this so check back!!! Now for some of my most fav pics from our NICU time.
1st time i layed eyes on him
Kayde's message board
Shows how tiny Kayde is in daddy's hands
What Is A Premautre Baby???
- Babies born less than 37 weeks gestation (after conception) is considered premature.
- Babies born with a birth weight of less than (<) 1000 grams are considered to have an extremely low birth weight, (ELBW).
- Babies who weigh between 1000 grams and <1500 grams are considered to be very low birth weight (VLBW).
- Babies born between 1500 grams and less than 2500 grams are considered to be low birth weight (LBW).
Causes:
If a woman goes into labor before 37 weeks, it is called preterm labor. Often, the cause of preterm labor is unknown. Multiple pregnancy (twins, triplets, etc.) makes up about 15% of all premature births.
Health conditions and events in the mother may contribute to preterm labor. Examples are:
- Diabetes
- Heart disease
- Infection (such as a urinary tract infection or infection of the amniotic membrane)
- Kidney disease
- An "insufficient" or weakened cervix, also called cervical incompetence
- Birth defects of the uterus
- History of preterm delivery
- Poor nutrition right before or during pregnancy
- Preeclampsia -- the development of high blood pressure and protein in the urine after the 20th week of pregnancy
- Premature rupture of the membranes (placenta previa)
Other factors that make preterm labor and a premature delivery more likely include:
- African-American ethnicity (not related to socioeconomic status)
- Age (younger than 16 or older than 35)
- Lack of prenatal care
- Low socioeconomic status
- Use of tobacco, cocaine, or amphetamines
Premature infant's organs are not fully developed. Infant needs special care in a nursery until the organ systems have developed enough to sustain life without medical support. This may take weeks to months.
Premature infant will have a lower birth weight than a full-term infant. Common physical signs of prematurity include:
- Body hair (lanugo)
- Abnormal breathing patterns (shallow, irregular pauses in breathing called apnea)
- Enlarged clitoris (female infant)
- Problems breathing due to immature lungs (neonatal respiratory distress syndrome) or pneumonia
- Lower muscle tone and less activity than full-term infants
- Problems feeding due to difficulty sucking or coordinating swallowing and breathing
- Less body fat
- Small scrotum, smooth without ridges, and undescended testicles (male infant)
- Soft, flexible ear cartilage
- Thin, smooth, shiny skin, which is often transparent (can see veins under skin)
Exams and Test:
Your baby may have difficulty breathing and maintaining body temperature.
Common tests performed on a premature infant include:
- Blood gas analysis
- Blood tests to check glucose, calcium, and bilirubin levels
- Chest x-ray
- Continuous cardiorespiratory monitoring (monitoring of breathing and heart rate)
When premature labor develops and cannot be stopped, the health care team will prepare for a high-risk birth. You may be moved to a center that specifically cares for premature infants in, for example, a neonatal intensive care unit (NICU).
After birth, the baby is admitted to a high-risk nursery. The infant is placed under a warmer or in a clear, heated box called an incubator, which controls the air temperature. Monitoring machines track the baby's breathing, heart rate, and level of oxygen in the blood.
Infants are usually unable to coordinate sucking and swallowing before 34 weeks gestation. Therefore, the baby may have a small, soft feeding tube placed through the nose or mouth into the stomach. In very premature or sick infants, nutrition may be given through a vein until the baby is stable enough to receive all nutrition in the stomach. (See: Neonatal weight gain and nutrition)
If the infant has breathing problems:
- A tube may be placed into the windpipe (trachea). A machine called a ventilator will help the baby breathe.
- Some babies whose breathing problems are less severe receive continuous positive airway pressure (CPAP) with small tubes in the nose rather than the trachea. Or they may receive only extra oxygen.
- Oxygen may be given by ventilator, CPAP, nasal prongs, or an oxygen hood over the baby's head.
Outlook (Prognosis):
Prematurity used to be a major cause of infant deaths. Improved medical and nursing techniques have increased the survival of premature infants. The longer the pregnancy, the greater the chance of survival. Of babies born at 28 weeks, at least 90% survive.
Prematurity can have long-term effects. Many premature infants have medical, developmental, or behavioral problems that continue into childhood or are permanent. The more premature an infant and the smaller the birth weight, the greater the risk of complications. However, it is impossible to predict a baby's long-term outcome based on gestational age or birth weight.
Possible Complications:
Possible complications that may occur while in the hospital include:
- Anemia
- Bleeding into the brain (intraventricular hemorrhage of the newborn) or damage to the brain's white matter (periventricular leukomalacia)
- neonatal sepsisInfection or
- Low blood sugar (hypoglycemia)
- Neonatal respiratory distress syndrome, extra air in the tissue of the lungs (pulmonary interstitial emphysema), bleeding in the lungs (pulmonary hemorrhage)
- Newborn jaundice
- Patent ducturs arteriosus
- Severe intestinal inflammation (necrotizing enterocolitis)
- Bronchopulmonary dysplasia (BPD)
- Delayed growth and development
- Mental or physical disability or delay
- Retinopathy of prematurity, vision loss, or blindness
One of the most important steps to preventing prematurity is to receive prenatal care as early as possible in the pregnancy, and to continue such care until the baby is born. Statistics clearly show that early and good prenatal care reduces the chance of premature birth.
Premature labor can sometimes be treated or delayed by a medication that blocks uterine contractions. Many times, however, attempts to delay premature labor are not successful.
Betamethasone (a steroid medication) given to mothers in premature labor can reduce the severity of some of the prematurity complications on the baby.
I will defentaly be blogging more on this so check back!!! Now for some of my most fav pics from our NICU time.
1st time i layed eyes on him
2 week old tiny lil feet..
1 1/2 months old
Wednesday, November 16, 2011
Monday, November 14, 2011
RSV Season
It's that time of year again here in Canada. Cold/Flu season, and with that I wanted to shed some light on RSV ( Respiratory Syncytial Virus ). Many may not know as I did not know either RSV can be more serious than a cold for some babies. Kayde being one of those babies, and me being his momma I feel it's my duty to spread the word/educate/raise awareness/talk and just simple share what I learn along my way. Kayde will be getting 5 injections of SYNAGIS7 this season. ( Nov-Mar ). 1 a month.
What is RSV ?
-RSV is a common virus in infancy and early childhood. Almost all children will have been infected with RSV by age of 2-3.1-3
- RSV infections tends to happen from Fall to Spring in temperate climates such as Canada, RSV season may vary by region.1 Best to ask your doctor when RSV occurs in your local area.
Is your baby at risk of getting very sick from RSV ?
- RSV causes symptons similar to the common cold in many children.3 But in certin cases, most often in premature babies (preemies) and in children under 2 with certin lung conditions or heart disease, RSV can cause infection of the lungs, When this happens babies become very sick and may need to be hospitalized.
-RSV can cause pneumonia and is the most important cause of bronchiolitis during 1st year of life.1,2
Premature Babies ( preemies)
-Your baby is at greater risk of RSV if he/she was born prematurely before 33 weeks of pregnancy, and is under 6 months of age at the start of RSV season.1
Bronchopulmonary dysplasia (BPD)
- Bronchopulmonary dysplasia occurs most commonly in preterm infants who received long -term mechanical ventilation and high oxygen concentrations.4
Congenital heart disease (CHD)
- There are several different types of CHD. Some types can increase the risk of developing a serious form of RSV disease. If your baby has CHD, ask your doctor for more specific information.1,5
What are the symptoms ?
The symptoms of RSV may be like cold at first and can include:
- Fever
- Runny nose
- Other cold like symptoms1,3
The symptoms of RSV may get worse after it gets into the lungs. These symptoms can include:
- Deeper & more frequent coughing
- Difficulty breathing, including wheezing ( a whistling sound) and rapid breathing
- Blue lips or fingernails
- Dehydration
- Difficulty breast-feeding or bottle-feeding3
Is it easy to catch RSV ?
Yes, it is easy....
- RSV is a very common virus that is spread by any physical contact such as touching, kissing or shaking hands with an infected person.1,6
- The germs are also spread through the air when an infected person sneezes or coughs.1,6
- RSV can live for hours on a countertop or on used tissue.1
- RSV infection is very common in crowded living areas and daycare centers.1,6
These are all the reasons why you must be very careful and take steps to prevent your baby from being exposed to RSV.
Helpful steps to reduce the risk
- Wash hands with alcohol hand rinse or warm water and soap before touching baby.1
- If you have a cold or fever, gently hug instead of kiss your baby.6
- Keep anyone with a cold symptoms or fever away from your baby.
- Try to keep your baby away from crowded places (such as daycares,malls, large family gatherings,ect.)1,6
- Do not smoke around the baby. Ban smoking inside your house.1
RSV
What you need to remember
It is highly contagious. Following the suggestions will help you reduce the risk of your baby catching RSV infection. If you have any questions you should contact your doctor or nurse.
REFERENCES:
1. The Hospital For Sick Children. About Kids Health. Respiratory syncytial virus(RSV)
2. Centers for Disease Control and Prevention. Respiratory syncytial virus(RSV), Infection and Incidence.
3.Canadian Lung Association. Diseases A-Z. Respiratory syncytial virus (RSV).
4. The Hospital For Sick Children. About Kids Health. Premature Babies Chronic Lung Disease.
5. The Hospital For Sick Children. About Kids Health. Heart Conditions. About Heart Conditions.
6. Centers for Disease Control and Pervention. RSV: Frecuently asked questions.
7.SYNAGIS (palivizumab) Product Monograph, Abbott Laboratories Limited. April 11,2006.
What is RSV ?
-RSV is a common virus in infancy and early childhood. Almost all children will have been infected with RSV by age of 2-3.1-3
- RSV infections tends to happen from Fall to Spring in temperate climates such as Canada, RSV season may vary by region.1 Best to ask your doctor when RSV occurs in your local area.
Is your baby at risk of getting very sick from RSV ?
- RSV causes symptons similar to the common cold in many children.3 But in certin cases, most often in premature babies (preemies) and in children under 2 with certin lung conditions or heart disease, RSV can cause infection of the lungs, When this happens babies become very sick and may need to be hospitalized.
-RSV can cause pneumonia and is the most important cause of bronchiolitis during 1st year of life.1,2
Premature Babies ( preemies)
-Your baby is at greater risk of RSV if he/she was born prematurely before 33 weeks of pregnancy, and is under 6 months of age at the start of RSV season.1
Bronchopulmonary dysplasia (BPD)
- Bronchopulmonary dysplasia occurs most commonly in preterm infants who received long -term mechanical ventilation and high oxygen concentrations.4
Congenital heart disease (CHD)
- There are several different types of CHD. Some types can increase the risk of developing a serious form of RSV disease. If your baby has CHD, ask your doctor for more specific information.1,5
What are the symptoms ?
The symptoms of RSV may be like cold at first and can include:
- Fever
- Runny nose
- Other cold like symptoms1,3
The symptoms of RSV may get worse after it gets into the lungs. These symptoms can include:
- Deeper & more frequent coughing
- Difficulty breathing, including wheezing ( a whistling sound) and rapid breathing
- Blue lips or fingernails
- Dehydration
- Difficulty breast-feeding or bottle-feeding3
Is it easy to catch RSV ?
Yes, it is easy....
- RSV is a very common virus that is spread by any physical contact such as touching, kissing or shaking hands with an infected person.1,6
- The germs are also spread through the air when an infected person sneezes or coughs.1,6
- RSV can live for hours on a countertop or on used tissue.1
- RSV infection is very common in crowded living areas and daycare centers.1,6
These are all the reasons why you must be very careful and take steps to prevent your baby from being exposed to RSV.
Helpful steps to reduce the risk
- Wash hands with alcohol hand rinse or warm water and soap before touching baby.1
- If you have a cold or fever, gently hug instead of kiss your baby.6
- Keep anyone with a cold symptoms or fever away from your baby.
- Try to keep your baby away from crowded places (such as daycares,malls, large family gatherings,ect.)1,6
- Do not smoke around the baby. Ban smoking inside your house.1
RSV
What you need to remember
It is highly contagious. Following the suggestions will help you reduce the risk of your baby catching RSV infection. If you have any questions you should contact your doctor or nurse.
REFERENCES:
1. The Hospital For Sick Children. About Kids Health. Respiratory syncytial virus(RSV)
2. Centers for Disease Control and Prevention. Respiratory syncytial virus(RSV), Infection and Incidence.
3.Canadian Lung Association. Diseases A-Z. Respiratory syncytial virus (RSV).
4. The Hospital For Sick Children. About Kids Health. Premature Babies Chronic Lung Disease.
5. The Hospital For Sick Children. About Kids Health. Heart Conditions. About Heart Conditions.
6. Centers for Disease Control and Pervention. RSV: Frecuently asked questions.
7.SYNAGIS (palivizumab) Product Monograph, Abbott Laboratories Limited. April 11,2006.
Monday, November 7, 2011
Day 7: 21 Random Things About Kayde
I have posted this blog before back in October, when I was blogging for 31 for 21. I thought it would be a good way to end blogging for awareness in Canada. I have tweaked it a little bit has Kayde has reached a few new milestones. :)
1. Born 3lbs @ 30 weeks gestation ( now 14 lbs last weigh in @ 6 months corrected age). Puts him in the 50th% on DS growth chart.
2. No health issues ( feeewww we have been lucky)
3.Is a lil flirt already with the ladies.. lol
4. Sitting up in bath ring and Loves his bath
5. Is a thumb, finger an whole fist sucker
6. Can roll over .
7. Those tiny lil feet are his new long lost friends.. Tells them some pretty serious stories.
8. Is a true boob greedy lil man. And I'm proud that he is
9. Likes to be tickled under his chin an in his thighs.
10. The most beautiful blue almond shaped eyes .
11. Looks like big sis and daddy.
12. Has a smile that melts my heart over and over.
13. Is a nosey lil parker.
14. Has single deep crease across left palm.
15. Love the way that lil right ear curves out.
16. Is adored by big bro an sis.
17. Started making raspberry sounds !!!!
18. Has the cutest lil protruding tongue.
19. Likes to be sung and read to.
20. Has recently started solids.
21.An yes he has an extra chromosome. Which as you see is a small part of who he really is..
My son is a baby like any other baby, just on a different path, a path that has shown me to slow down and enjoy. So we may have to work a little harder at things but it makes it that much more worth it. I am blessed.
Yep that's my boy an he's all mines. I get lost with love in those eye's.
1. Born 3lbs @ 30 weeks gestation ( now 14 lbs last weigh in @ 6 months corrected age). Puts him in the 50th% on DS growth chart.
2. No health issues ( feeewww we have been lucky)
3.Is a lil flirt already with the ladies.. lol
4. Sitting up in bath ring and Loves his bath
5. Is a thumb, finger an whole fist sucker
6. Can roll over .
7. Those tiny lil feet are his new long lost friends.. Tells them some pretty serious stories.
8. Is a true boob greedy lil man. And I'm proud that he is
9. Likes to be tickled under his chin an in his thighs.
10. The most beautiful blue almond shaped eyes .
11. Looks like big sis and daddy.
12. Has a smile that melts my heart over and over.
13. Is a nosey lil parker.
14. Has single deep crease across left palm.
15. Love the way that lil right ear curves out.
16. Is adored by big bro an sis.
17. Started making raspberry sounds !!!!
18. Has the cutest lil protruding tongue.
19. Likes to be sung and read to.
20. Has recently started solids.
21.An yes he has an extra chromosome. Which as you see is a small part of who he really is..
My son is a baby like any other baby, just on a different path, a path that has shown me to slow down and enjoy. So we may have to work a little harder at things but it makes it that much more worth it. I am blessed.
Sunday, November 6, 2011
Day 6: Great Close To Home Story..
Perception is a funny thing... While for many, it's considered everything, it can be very deceiving. And dangerous as assumptions typically follow; assumptions based, for whatever reason, on how we believe things should be as opposed to how they really are.
Jeff Stewart has lived his 57 years staring perception down and, well, living his life as best he can.
How well has he succeeded? Well, consider the Down Syndrome he was born with is but a mere footnote in the story that is his life. Has been for some time now.
That's not to downplay the chromosome-related condition's effect on his journey, both then and now. It has been a trial at times, both for himself and his family. But Down Syndrome is not at Jeff's centre. It's not what makes his broad smile broad, his infectious personality infectious and his boundless enthusiasm boundless.
These are the things which define Jeff Stewart. These are his gifts to all he meets.
---
"If he lives to age 20, he'll die of old age."
On May 22, 1954, the day after their son Jeff was born at the old Peterborough Civic Hospital, Helen and Neil Stewart heard those words from their doctor, who ealier confirmed their newborn had Down Syndrome.
But as blunt as that message was, it paled in comparison to what their pediatrician told the couple a short while later.
"If it was my child, I wouldn't have brought him home."
In that doctor's defence, one could argue it was a different time; a time when anyone with any intellectual impairment was labeled "mentally retarded." A time when many faced with the challenge that Helen and Neil faced didn't bring their child home.
"That was never an option," says Helen.
"We brought Jeff home and looked after him just as we did all our children.
"Everything was fine with my pregnancy. Down Syndrome was the last thing on our minds. Even my doctor, the last time I saw him, said he was still shocked. Down Syndrome children are usually born to older women or there's a history in the family."
What Helen didn't know then is that both she and her father are carriers of Down Syndrome, as are the Stewarts' two other sons, Cory and Philip. Their first child, Cathy, isn't a carrier but a granddaughter, Beth, now 29, also has Down Syndrome. But back to 1954 and life at the Stewarts' modest south Peterborough home, where the couple still resides today.
"Jeff was a little slow learning to walk but I can't say we treated him any differently than any of our children," notes Helen, understating how vital Jeff's full integration in family life was to his development.
"We tried very hard not to let him dominate. He can be a little forceful but we made him toe the line. Really, though, he was a good kid."
Education for Jeff involved half days at nearby Trafalgar School until age 10. Six years later, he was taking classes at Trafalgar Senior School and did so until age 21.
From there, for the next 11 years, ARC Industries, which provided work opportunities for people with developmental challenges, was the centre of his life outside the home.
Helen, meanwhile, immersed herself in what was then the Peterborough and District Association for the Mentally Retarded -- the forerunner of what is today known as Community Living Peterborough. She made it her mission to learn as much as possible about the supports the developmentally impaired require in order to better support her son, eventually serving as board president.
"I was determined to get whatever support I could for Jeff. He was our son. There was nothing we wouldn't do for any of our children."
---
"I don't like jazz...and I don't like opera."
With that, Jeff Stewart defines his love of almost all things music -- a love that he clearly expresses each Tuesday, noon to 1 p.m., via Country Cousins.
He has co-hosted the Trent Radio program with "Washboard" Hank Fisher, his second cousin, for an astounding 22 years.
But Jeff's involvement with the radio station goes back even further to when he did custodial work there -- he still does -- as well as hosted a music 'n' talk program titled What's In It For Me?
"I like to entertain people," notes Jeff, breaking into a wide smile before stating the obvious.
"I like to talk."
Longtime Trent Radio general manager John Muir is more blunt.
"Jeff is a ham...it's hard to picture things around here without him.
"He's brought a great deal of fun and humour to this place. What he and Washboard do is typical of the hair-down type of entertainment Trent Radio is known for. He plays the straight guy to Washboard's comedy. It really is something."
But Jeff's radio work is the tip of the proverbial iceberg when it comes to his weekly volunteer work.
He also waters plants and collects library books at Fairhaven; cleans windows and vacuums at Marycrest At Inglewood; stuffs billing envelopes at the MNR; and folds church bulletins at St. James' United Church.
At the latter, he has secured some small parts in St. James' Players productions -- an experience complemented by his work with Dream Players, a variety performance troupe for people with intellectual challenges. In 2007, Jeff's gift for gab came in handy as he emceed Dream Players' annual show.
And then there's his beloved Peterborough Petes. A season ticket holder, Jeff attends home games with longtime friends John and Sheila Beak as well as spends time at their home -- a relationship struck and maintained via the Special Services At Home program.
"There is nothing Jeff thinks he can't do," says Helen, pointing specifically to the past year-and-a-half and what has undoubtedly been her son's biggest challenge to date -- living outside the family home at St. Monica House at the former Mount St. Joseph property.
There, with housemates Doug Clifford and Jim Watkins, Jeff is experiencing independence on what is, for him, an unprecedented scale.
"I prefer staying here (at the family home) but Mom and Dad are getting a bit older," says Jeff.
"But I like it very well, being a part of the community of the City of Peterborough."
In Jack Gillan's mind, Jeff's community integration, and the strong support of his family, should be held up as a shining example that any barriers facing those in similar circumstances can be overcome and then some.
As CEO of Community Living Peterborough, which serves some 360 people with intellectual disabilities, he see Jeff's journey as the ultimate success story.
"His parents always had a positive vision for him and that's really obvious in what success he's had," says Mr. Gillan.
"Educating the community at large that people with intellectual disabilities can contribute in a meaningful way is still the big hurdle. It's better than what it was but there's still some ways to go. Jeff is an example of what can be, and is, accomplished by many.
"We're lucky. Peterborough is such a welcoming community in many ways. That has given our clients, like it has Jeff, so many opportunities. This really is a feel-good success story that is heartwarming on so many levels."
---
"We're both extremely proud of Jeff...so are his brothers and sister," notes Helen, enjoying having her son home, if only for a bit before his busy life sees him head off.
"There's no secret here. Accept your kids for what they are. Give your support and accept them and things will work out."
With that, Jeff ventures into his family home bedroom, still maintained for him.
There, draped over a dresser mirror, are two medals. Both are of the gold variety, won by Jeff for his freestyle swimming prowess at the Special Olympics in 1969 and in 1971.
"Rose Kennedy presented the first one to me," he says, no shortage of pride in his voice.
With that, returning the medal to its rightful place, Jeff bids a hasty goodbye.
He has a bus to catch and, more to the point, a full life to tend to.
Saturday, November 5, 2011
Day 5: Saint John DSS Honours
The Saint John Down Syndrome Society in Saint John, NB, Canada created this video in honour of National Down Syndrome Awareness Week 2011. This video showcases the reality of Down syndrome today and the positive impact people with Down syndrome have in our families and our communities.
Watch video here: http://youtu.be/YLtGuZjucM4
Watch video here: http://youtu.be/YLtGuZjucM4
Friday, November 4, 2011
Day 4: Photo Friday
Afternoon nap with sis
Day 3: "See the Ability"
Sudbury Catholic Student Helping Others to “See the Ability”
November 2, 2011 - It all started with a photo submission for a calendar. Little did Lisa Wright know that this one simple act would have her daughter Holly’s smiling face on 700 billboards across the country. Holly is a twelve year old girl who attends Pius XII Catholic Secondary School, and who happens to have Down syndrome.
Each year, Lisa liked to submit a photo of Holly to the Canadian Down Syndrome Society for their yearly calendar publication. A photo taken by her brother-in-law the previous summer depicted Holly kayaking at their camp on Fairbank Lake. Holly had just learned to kayak and the photo was captured on her very first attempt. Lisa describes Holly as very much like girls her age – loves music, movies, all of today’s “pop stars” and young actors. Holly also enjoys numerous activities – especially the ones that have to do with water. After seeing Holly’s love of the water in the kayak, captured in the picture, Lisa knew that this was the one she wanted to submit. “Shocked” is the word Lisa used when she received the phone call from the Down Syndrome Association saying not only was she selected, Holly was going to be the poster girl for their national campaign – involving a full page ad in the Globe and Mail, as well a the hundreds of billboards across Canada. “We are so proud of Holly and also quite excited – she is quite the gal,” Wright said. “She is certainly more alike children her age than she is different, and that is the message we need to get out to the public. People are encouraged to ‘see the ability’”. When asked about how she felt about all of the attention and seeing herself in the ads, Holly smiled and said that it makes her happy and makes her smile more.
Lisa takes part in the Canadian Down Syndrome Buddy Walk each year, and, as it is Down syndrome Awareness week November 1-7, the Buddy Walk will be taking place on Sunday, November 6, beginning at 11:00 at Lockerby Composite School. The walk is to raise awareness of the capabilities of people with Down Syndrome. All are encouraged to attend!
Wednesday, November 2, 2011
Day 2: PT
So we had a PT session today an it was ok . Sorry the Pt session was fine an good as always. I'm having one of those days.... . It was great to see how impressed she was with the development Kayde has progressed since our last visit ( head control/ passing toy's/ rolling over/ and started solids) Feels good to have a lil list of achivments to share. Way to go Kayde!!!
We got into what we need to work on next. An 2 big things are trunk control and kayde sitting frog legged. It was I who brought up about sitting frog legged as I had read about it on a blog (sorry don't remember who's blog) an I was concered about it because kayde is always frog legged, sitting/ laying/ on belly legs are frog like..an never before had I ever been told to watch for it. She agreed that she had noticed an was about to talk to me about it an what I can do to help. She showed me a few excersises to do an gave me few pointers of other things i can do . I mentioned about "Hip Helpers" which I read about on BabyCenter DS community posts, She had never heard of them. Check them out at HipHelpers.com
Grr.. sorry but lately I have been questioning alot of things about Kayde that I have been reading up on and about and it's like everything I am asking about noone knows about it. Getting frustrated....
Here is some of our new PT that we will be working on for trunk control an bringing Kayde's legs/hips into the center of his body to correct the frog leg.
- Sitting- on variety of surfaces,while assisting in holding legs in center of body, letting Kayde use his trunk muscles to bring his trunk over his hips.
- Stuffing rolls in sides of carseat to turn hips in an center legs in front body.
- Taking weight through feet on different surfaces, sitting on lap with good alinment knees pointing forward over feet rock from heel to toe as if when we take a step.
- Carrying with one leg tucked up under him with the other leg extended straight down. switch often
- Straddle over leg /thigh an apply pressure to feet as you sway from side to side.
- Fold diaper smaller between legs, helps with making it that lil bit easier to close legs
- Simlar to above for all Baby Accesoriess like backpacks/ exersaucers ect. "Skinny " where legs go into so hips are not wide apart.
- "Hip Helpers" ( will post what I think on them after we give them a try)
We got into what we need to work on next. An 2 big things are trunk control and kayde sitting frog legged. It was I who brought up about sitting frog legged as I had read about it on a blog (sorry don't remember who's blog) an I was concered about it because kayde is always frog legged, sitting/ laying/ on belly legs are frog like..an never before had I ever been told to watch for it. She agreed that she had noticed an was about to talk to me about it an what I can do to help. She showed me a few excersises to do an gave me few pointers of other things i can do . I mentioned about "Hip Helpers" which I read about on BabyCenter DS community posts, She had never heard of them. Check them out at HipHelpers.com
Grr.. sorry but lately I have been questioning alot of things about Kayde that I have been reading up on and about and it's like everything I am asking about noone knows about it. Getting frustrated....
Here is some of our new PT that we will be working on for trunk control an bringing Kayde's legs/hips into the center of his body to correct the frog leg.
- Sitting- on variety of surfaces,while assisting in holding legs in center of body, letting Kayde use his trunk muscles to bring his trunk over his hips.
- Stuffing rolls in sides of carseat to turn hips in an center legs in front body.
- Taking weight through feet on different surfaces, sitting on lap with good alinment knees pointing forward over feet rock from heel to toe as if when we take a step.
- Carrying with one leg tucked up under him with the other leg extended straight down. switch often
- Straddle over leg /thigh an apply pressure to feet as you sway from side to side.
- Fold diaper smaller between legs, helps with making it that lil bit easier to close legs
- Simlar to above for all Baby Accesoriess like backpacks/ exersaucers ect. "Skinny " where legs go into so hips are not wide apart.
- "Hip Helpers" ( will post what I think on them after we give them a try)
Tuesday, November 1, 2011
Day 1- Canadian Down Syndrome Awareness Week
Well it's Nov an it is the kick- off of Down Syndrome Awareness week in Canada. Taking the idea from 31 for 21 I have pledge to blog all week, to help raise awareness. To start off the week I came across this article on the CDSS (Canadian Down Syndrome Society) website.
14 girls were selected to be part of The Dove Self-Esteem Fund's "One Girl Can", one of those girls being Miranda Yates.. Read about it here:
14 girls were selected to be part of The Dove Self-Esteem Fund's "One Girl Can", one of those girls being Miranda Yates.. Read about it here:
www.cdss.ca/.../bc-girl-featured-in-doves-one-girl-can-campaign.htm...
Monday, October 31, 2011
31 for 21: Day 31- Holloween Pics!!!
Happy Halloween Everyone !!!! What a beautiful night, not to chilly an was filled with a bunch of trick-or-treating. Wow I can't believe how well the kids did omg!! Uhmm uhmm yummy yummy lots of candy for mommy to eat...lol. Sorry Kayde is cutting it short for me tonight as he is coming down with a cold an wants mommy but here is a photo bomb of my kiddies+ nephew. :)
Kayde's 1st Halloween
My sweet lil bee...
Grim repper(big bro)
Zombie (nephew)
lady bug lady bug....(big sis)
Cutest lady bug I've ever seen :)
Kayde taking it all in, learning how to do it for next year!!!
Kayde's 1st Halloween
Sunday, October 30, 2011
31 for 21:Day 30- God Chose Me For A Reason
Not everyone fits that criteria, I am truly blessed.
Saturday, October 29, 2011
31 for 21: Day 29- Sister Love Sat
31 for 21: Day 28- Famous Netflix Movie "UP SYNDROME
I Love this story how wonderful. True friendship.. Pls click on links an watch.
Part 1: http://youtu.be/9tTBSUPM_3U
Part 2: http://youtu.be/mYtXcu11-2M
Part 1: http://youtu.be/9tTBSUPM_3U
Part 2: http://youtu.be/mYtXcu11-2M
31 for 21: Day 27- One Thing I Want People To Get ( or understand) About T21
- Kayde is a little boy 1st secondary to having Down Syndrome.
- People with Down syndrome are just that. They’re people. They’re not “inspirations,” they’re not “sweethearts,” they’re not “little angels.” They can be some or all of those things, but so can you. Having an extra chromosome does not put you on the fast track to sainthood, nor does it strip you of your humanity. A person with Down syndrome is not their diagnosis.
They are individuals. They learn throughout their lives. They’re not “adult children.” Adults with Down syndrome desire the same things typical adults do: independence, companionship, purpose in life. With appropriate supports, these things are more than possible for people with Down syndrome. They do not require paternalistic, pat-on-the-head treatment. They often require supports, yes, but they also require – and are deserving of – our respect as equals.
- People with Down syndrome are just that. They’re people. They’re not “inspirations,” they’re not “sweethearts,” they’re not “little angels.” They can be some or all of those things, but so can you. Having an extra chromosome does not put you on the fast track to sainthood, nor does it strip you of your humanity. A person with Down syndrome is not their diagnosis.
They are individuals. They learn throughout their lives. They’re not “adult children.” Adults with Down syndrome desire the same things typical adults do: independence, companionship, purpose in life. With appropriate supports, these things are more than possible for people with Down syndrome. They do not require paternalistic, pat-on-the-head treatment. They often require supports, yes, but they also require – and are deserving of – our respect as equals.
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