Health and Children with Down syndrome

When Bridget was little, we heard over and over how children with Down syndrome are more likely than typical children to have hearing and vision difficulties, thyroid dysfunction and an increased risk of developing leukemia (in addition to the heart defects and complications in roughly half of kids with Ds).

We heard that children with Down syndrome also more likely to suffer from chronic ear, chest and sinus infections. In general, children with Ds tend to have more health complications and generally weakened immune systems compared to typical children. At least that's what we read and heard.

We were always on the look out for illness with Bridget. I worried that it would take her longer to recover when she did get sick.

We spent Bridget's first month in the hospital, so the whole family became practiced in taking extra precautions to keep her well. (The germs that come with four school-age siblings were a major concern initially.)

But our experience with Bridget has been much different than what we prepared for in her first few years. I can count on one hand the number of times she has been sick. I'm always extra concerned about her when she starts to come down with something, but she has proven me wrong time and time again. She holds her own during illness and bounces right back.

For anyone who is curious, Bridget has received her regular immunizations (on a slightly modified schedule) and within her first year also received shots of Synagis, an antibody given to protect premature infants (and other babies at elevated risk) from respiratory syncytial virus (RSV). She is not on medicines, vitamins or supplements of any kind. She does eat a variety of healthy foods (salmon, avocado, berries, oatmeal, squash, peas, whole grains, lean meats, yogurt, etc.), has very few sweets and limited dairy (other than yogurt). She drinks soy milk.

I realize that Bridget is only (almost) three, and we will continue to screen for the health concerns that are more common in people with Ds. I need to keep reminding myself, though, that Bridget is an individual, and will have her own unique path to travel. While I have no idea whether anything we have done (or not done) has made a difference, I do know that her health--along with her abilities and achievements--can't be predicted.

Health and Children with Down syndrome

When Bridget was little, we heard over and over how children with Down syndrome are more likely than typical children to have hearing and vision difficulties, thyroid dysfunction and an increased risk of developing leukemia (in addition to the heart defects and complications in roughly half of kids with Ds).

We heard that children with Down syndrome also more likely to suffer from chronic ear, chest and sinus infections. In general, children with Ds tend to have more health complications and generally weakened immune systems compared to typical children. At least that's what we read and heard.

We were always on the look out for illness with Bridget. I worried that it would take her longer to recover when she did get sick.

We spent Bridget's first month in the hospital, so the whole family became practiced in taking extra precautions to keep her well. (The germs that come with four school-age siblings were a major concern initially.)

But our experience with Bridget has been much different than what we prepared for in her first few years. I can count on one hand the number of times she has been sick. I'm always extra concerned about her when she starts to come down with something, but she has proven me wrong time and time again. She holds her own during illness and bounces right back.

For anyone who is curious, Bridget has received her regular immunizations (on a slightly modified schedule) and within her first year also received shots of Synagis, an antibody given to protect premature infants (and other babies at elevated risk) from respiratory syncytial virus (RSV). She is not on medicines, vitamins or supplements of any kind. She does eat a variety of healthy foods (salmon, avocado, berries, oatmeal, squash, peas, whole grains, lean meats, yogurt, etc.), has very few sweets and limited dairy (other than yogurt). She drinks soy milk.

I realize that Bridget is only (almost) three, and we will continue to screen for the health concerns that are more common in people with Ds. I need to keep reminding myself, though, that Bridget is an individual, and will have her own unique path to travel. While I have no idea whether anything we have done (or not done) has made a difference, I do know that her health--along with her abilities and achievements--can't be predicted.

Things Mama's Gotta Have

There's a post up on Down Syndrome New Mama: 10 Things Mama's Gotta Have for a new baby with Down syndrome (and a request for other bloggers to make their own lists). So, here are links to items--yeah, I know it's more than ten :)--we found invaluable in Bridget's first year:

Items to save mom and dad's sanity:

- When Bridget was a new baby, the Zaky was a great item to have. I used it to position her in her carseat, to position her for sleeping, or to place under her head while I changed her diaper (she had reflux when she was tiny, and this made it so she was not lying flat). While it is a functional item for parents, the Zaky provides a sense of comfort for babies. It is weighted, washable and soft. Ask for two of these for baby gifts, or splurge and get two for yourself. It's worth it. You won't believe all the ways you'll be able to use it.


- The Fisher Price Baby Papasan Chair is comfy and soft for baby. It also has music and soothing vibrations, which Bridget loved. When she was really little, I moved this thing all over the house with me (with a Zaky tucked in on either side), and she napped happily in it with her head nicely elevated. This comes in a variety of colors and patterns.

- We had two travel-size pack-n-plays with removable bassinets for Bridget (one on the first floor and one upstairs). Lightweight and small in size (and 1/2 the price of the full-size model), these were the bomb for us! You can find space for this pack-n-play almost anywhere, and it fits through doorways and is ultra-easy to move around the house, or to pack for travel. Plus, it's dang cute. Also comes in a variety of colors and patterns.
- Once Bridget started to become interested in scooting and crawling, the superyard, which we called "The Ranch"--a set of interlocking safety gate pieces--was an essential item. We even took The Ranch on vacation (the gates fold flat). There are extension pieces you can purchase to make the superyard larger, and the shape can be modified to make a rectangle, square or hexagon/octagon (depending on the number of pieces).

Items to soothe and comfort baby:

- Music (this one by Norah Jones, this one by Chloe Agnew, or this one by Lorie Line) that is soft and pretty for bathtime and bedtime.


- A portable CD/MP3 player is a must-have item. Bridget loved (and still loves) music of all kinds.- Who wants flaky, itchy skin? No one! The best stuff for baby's skin (though not the least expensive): Arbonne baby wash, oil and lotion. This is the most mild, sweetest smelling baby wash out there. (The baby wash is also great as a face wash for adults or teens with sensitive skin, and makes the best soak for a pedicure. Another bonus: it does wonders for eczema.) I used the oil (light and absorbs easily) for infant massage with Bridget. She had the best skin of any of our kids as babies...and I think these products are the reason. p.s. I do not sell Arbonne products in case anyone is wondering :). You can find a rep on the website, though. You can also sign up as a consultant, pay a $35 once-a-year charge and get a nice discount (I think it is 30% off) whenever you order (without actually selling the products). A good way to go if you are planning on using these exclusively for baby's first year.
Other Baby Care Items:

For Oral Care & desensitization:

- Nuk brush (use alone, or roll in things like applesauce, yogurt, Nutrigrain bars)


- Finger brush for teeth and gums
- A good humidifier is essential. We ran one each night when Bridget slept. We also used Simply Saline on a daily basis. Her nasal passages were so tiny that she always seemed (and sounded) stuffy. These two things worked like a miracle for us.

Feeding essentials:

- A small food processor is great, but the Munchkin Food Grinder (inexpensive and entirely portable) is also awesome for making healthy, safe food for baby to eat.



- The best spoons for feeding Bridget were maroon spoons.


-We placed a free-standing, acrylic therapy mirror (portable and lightweight--like this one, or this one) on Bridget's high chair tray while she ate. (Actually, these mirrors went everywhere we went with Bridget. She loved--and still loves--to look at her own reflection.) The mirrors provide entertainment and are perfect for oral-motor skill development (including speech and learning to eat).

Books:

Books--educational books (especially by DK Publishing and Roger Priddy)--and toys for baby:

- I Can, Can You? (The cutest little book. All of the children in it have Down syndrome.)

- That's Not My... Touch & Feel series (We have That's Not My Fairy, That's Not my Kitten and That's Not My Mermaid)

- All of the DK Peekaboo! books (Bathtime Peekaboo! and Bedtime Peekaboo!are also favorites),
- Books by Proger Priddy

- Sassy developmental toys
- Fisher Price crawl-along drum (encourages crawling...it worked for Bridget...she loved trying to catch this toy as it rolled--and banging on it while it was in the open position).



- Books for Mom & Dad:Babies with Down Syndrome: A New Parents' GuideEarly Communication Skills for Children with Down Syndrome: A Guide for Parents and ProfessionalsGross Motor Skills in Children with Down Syndrome: A Guide for Parents and Professionals

Things Mama's Gotta Have

There's a post up on Down Syndrome New Mama: 10 Things Mama's Gotta Have for a new baby with Down syndrome (and a request for other bloggers to make their own lists). So, here are links to items--yeah, I know it's more than ten :)--we found invaluable in Bridget's first year:

Items to save mom and dad's sanity:

- When Bridget was a new baby, the Zaky was a great item to have. I used it to position her in her carseat, to position her for sleeping, or to place under her head while I changed her diaper (she had reflux when she was tiny, and this made it so she was not lying flat). While it is a functional item for parents, the Zaky provides a sense of comfort for babies. It is weighted, washable and soft. Ask for two of these for baby gifts, or splurge and get two for yourself. It's worth it. You won't believe all the ways you'll be able to use it.


- The Fisher Price Baby Papasan Chair is comfy and soft for baby. It also has music and soothing vibrations, which Bridget loved. When she was really little, I moved this thing all over the house with me (with a Zaky tucked in on either side), and she napped happily in it with her head nicely elevated. This comes in a variety of colors and patterns.

- We had two travel-size pack-n-plays with removable bassinets for Bridget (one on the first floor and one upstairs). Lightweight and small in size (and 1/2 the price of the full-size model), these were the bomb for us! You can find space for this pack-n-play almost anywhere, and it fits through doorways and is ultra-easy to move around the house, or to pack for travel. Plus, it's dang cute. Also comes in a variety of colors and patterns.
- Once Bridget started to become interested in scooting and crawling, the superyard, which we called "The Ranch"--a set of interlocking safety gate pieces--was an essential item. We even took The Ranch on vacation (the gates fold flat). There are extension pieces you can purchase to make the superyard larger, and the shape can be modified to make a rectangle, square or hexagon/octagon (depending on the number of pieces).

Items to soothe and comfort baby:

- Music (this one by Norah Jones, this one by Chloe Agnew, or this one by Lorie Line) that is soft and pretty for bathtime and bedtime.


- A portable CD/MP3 player is a must-have item. Bridget loved (and still loves) music of all kinds.- Who wants flaky, itchy skin? No one! The best stuff for baby's skin (though not the least expensive): Arbonne baby wash, oil and lotion. This is the most mild, sweetest smelling baby wash out there. (The baby wash is also great as a face wash for adults or teens with sensitive skin, and makes the best soak for a pedicure. Another bonus: it does wonders for eczema.) I used the oil (light and absorbs easily) for infant massage with Bridget. She had the best skin of any of our kids as babies...and I think these products are the reason. p.s. I do not sell Arbonne products in case anyone is wondering :). You can find a rep on the website, though. You can also sign up as a consultant, pay a $35 once-a-year charge and get a nice discount (I think it is 30% off) whenever you order (without actually selling the products). A good way to go if you are planning on using these exclusively for baby's first year.
Other Baby Care Items:

For Oral Care & desensitization:

- Nuk brush (use alone, or roll in things like applesauce, yogurt, Nutrigrain bars)


- Finger brush for teeth and gums
- A good humidifier is essential. We ran one each night when Bridget slept. We also used Simply Saline on a daily basis. Her nasal passages were so tiny that she always seemed (and sounded) stuffy. These two things worked like a miracle for us.

Feeding essentials:

- A small food processor is great, but the Munchkin Food Grinder (inexpensive and entirely portable) is also awesome for making healthy, safe food for baby to eat.



- The best spoons for feeding Bridget were maroon spoons.


-We placed a free-standing, acrylic therapy mirror (portable and lightweight--like this one, or this one) on Bridget's high chair tray while she ate. (Actually, these mirrors went everywhere we went with Bridget. She loved--and still loves--to look at her own reflection.) The mirrors provide entertainment and are perfect for oral-motor skill development (including speech and learning to eat).

Books:

Books--educational books (especially by DK Publishing and Roger Priddy)--and toys for baby:

- I Can, Can You? (The cutest little book. All of the children in it have Down syndrome.)

- That's Not My... Touch & Feel series (We have That's Not My Fairy, That's Not my Kitten and That's Not My Mermaid)

- All of the DK Peekaboo! books (Bathtime Peekaboo! and Bedtime Peekaboo!are also favorites),
- Books by Proger Priddy

- Sassy developmental toys
- Fisher Price crawl-along drum (encourages crawling...it worked for Bridget...she loved trying to catch this toy as it rolled--and banging on it while it was in the open position).



- Books for Mom & Dad:Babies with Down Syndrome: A New Parents' GuideEarly Communication Skills for Children with Down Syndrome: A Guide for Parents and ProfessionalsGross Motor Skills in Children with Down Syndrome: A Guide for Parents and Professionals

Bridget--35 Months

Bridget has made great strides in the past few months. She's investigating the world in every way she can (which is why she is now gated into our family room some of the time). Wherever she goes, she goes quickly (and quietly)! She’s curious, playful and spirited. She knows just what she wants and how to get it.

What’s new…

- More words: shirt (sounds more like dirt), dress (“dess”), kick!, hat, car, Sara (Suh!), Emmy (“Eh”), juice, doll, blanket (“ket”)

- Signing less, but still uses signs occasionally

- Walking up stairs with help

- Sniffs her own feet and says, “Ewww!”

- Has become very interested in other adults and kids

- Wants to point out her ponytails, dresses or shoes to others

- Loves to get in my closet and put my clothes over her clothes, then admire herself in the mirror

- Has successfully used the potty (for both #1 and #2). We will begin “real” potty training when we return from vacation. Bridget is proud of her accomplishments and claps for herself. She is excited about her rewards (mini M&Ms & stickers) and asks for them after she has gone. She wants to help flush the toilet and help clean her little potty chair. She also pretends to wipe and then flush the toilet paper. She signs "potty" and "potty chair".

- Loves to pretend to give massages and put on lotion

- Can roll her tongue (“hot dog bun tongue”)

- Is drinking well from a straw (she still gets some sippy cups, but we are trying to transition). Drinks thickened liquids from an open cup. (She is willing to drink thin liquids, but usually ends up getting too much).

- Had her first visit with the dentist and did well. She is good about letting us brush her teeth at home. Her teeth look healthy.

- Loves to give hugs and kisses, pats (pulls hair and bops people, too!)

- Loves to take care of her dolls

We are…

- Working on walking, balance and jumping

- Doing lots of oral-motor strengthening: bubbles, kazoo, tongue movement games

- Singing, dancing, reading, pretending with Bridget

- Playing outside (new: going to playgrounds and to the pool)

- Having Bridget point things out in books

- Counting 1-10 (books, flashcards, manipulatives)

- Stacking things

Our official transition to the city school system is scheduled for July 22, one day before her third birthday.