Tuesday, June 30, 2009

New Baby, New Blog

There is a new blog out there you just have to go visit... It is called Kaitlyn's Korner. Kaitlyn will be joining us this summer on August 4th. Stop by and read her story and make sure you let her mom, Jenee, know what a wonderful gift she is getting.

Saturday, June 27, 2009

Birth Announcement

There is a new little angel in town... Luke Thomas was born to Chad and Christina on June 19. Go have a peek at him and meet his family.

Thank you Rebecca for the lovely graphic. If you would like our community to know about the arrival of a new baby with Down syndrome, please send an email to ds.mama with the baby's info and an email address or blog/website address of the baby's mom or dad.

Tuesday, June 23, 2009

A Dozen Tips for Navigating NICU/PICU

Neonatal and pediatric intensive care units can be intimidating places. Unless you are in the field of pediatric medicine, you are way out of your element and it can feel like they all know more about your baby than you do. I am going to share twelve tips that can make ICU time easier on you and your baby.

1. Understand your baby’s condition. Go ahead and google reputable sources. In the two hospitals we did time in, I got the clear impression that the doctors did not want parents reading up on the internet. They felt that it filled their heads with unwarranted hope and misinformation. I disagreed. Reading about cutting edge technologies or other children’s miracles and successes helped me to formulate questions that needed to be asked and to stay encouraged. It also helped me to stand up against doctors’ suggested procedures and care orders that I was uncomfortable with and not convinced about.

2. Try to be at your baby’s bedside for rounds (when the doctors change shifts they walk around the floor and share information about each child’s current status.) Every change or happening from the night before or planned for that day will be discussed amongst the doctors and nurses. This is your chance to be apprised of every detail concerning your baby. Some NICUs and PICUs do not welcome parent eavesdropping or participation during rounds, but don’t be deterred. Ask for a clear explanation of why you should not be there to hear the details of your child’s day. You are your baby’s primary advocate. It is imperative that you are able to hear and understand what decisions are being made and why.

3. If you do not already have a blog, set up a Caring Bridge type of website (easy and free) to communicate your baby’s updates to family and friends. Using social media to broadcast messages means you only have to say (or rather, type) the information once and everyone can read the news. It also provides a wonderful way for those who care about you and your baby to let you know they are thinking of you.

4. Ask the neonatologist or attending physicians for verbal notification of all written changes to your baby’s medication orders and care orders. Make sure you understand why the change is being made. Some hospital units are very open and will not mind you reading your child’s daily sheets which include all doctors’ orders. Other hospitals, or even other units, may not allow you to view your child’s paperwork without an attending physician present. It can be difficult to get a “date” with the attending physician to read up on changes. So, to avoid confusion about care and meds, I found it easier to ask to be notified of changes. If you find your request is not being honored, go higher up the chain. It is your right to know every detail of your baby’s care.

5. If your baby will be camping out at the hospital for a couple of weeks or longer, ask that physical therapy be provided to the extent that your baby’s condition permits. If your baby will not be fed by mouth for any period of time, request therapy to maintain oral abilities and interest. It may seem odd to focus on things like this when your baby is very sick, but it is important.

6. Bring your baby’s favorite music cds, a sound machine, crib mobile, hanging toys—whatever you can—to his hospital room. This is tough to do at first because it feels like admitting that your baby is not just zipping through. Once you get over that, you’ll be glad you did it. Your baby will appreciate hearing music instead of just the monitor alarms. Any positive stimulation is a good thing.

7. Be aware that you have choices concerning your baby’s feedings. You can breastfeed your baby if you want to. If you are told that you cannot feed because your baby is fluid restricted or must have all of his fluid measured, ask for your child to be weighed before and after breastfeeding to determine the amount of milk ingested. If your baby needs a higher calorie milk, you can use whatever formula you prefer including Organic Similac (which the hospital most likely has) or Baby’s Only Organic. If you are told your baby will be getting corn oil added to his diet, you can insist that a healthier oil be used. We agreed to organic olive oil. I would recommend requiring that no new “foods” be added to your child’s diet without your notification and approval.

8. Get to know your baby’s primary nurse. She will know everything that goes on with your baby and it is important to be comfortable with her. If you cannot build a good rapport with her, ask for a different primary to be assigned to your baby. A good primary nurse can make a huge difference in the care your baby receives. If the unit your baby is in does use not the primary nurse model, make daily notes of the nurses who care for your baby. You can refuse specific nurses if you feel uncomfortable with any of the care provided to your baby.

9. Purchase some front-snap/closure onsies and sleepers for your baby to wear in the hospital. These are the easiest to put on over and around wires and tubes and the easiest for nurses to break into for vitals checks. Seeing your baby dressed can actually help you to feel better and your baby needs to soak up those good vibes.

10. Ask about support resources. Is there a Ronald MacDonald house or family room (or the equivalent) nearby, are free long-term parking passes available, can breastfeeding moms get free food trays, what religious services are available, can long-term patient parents get cafeteria discounts, can hand/foot printing or casting be done?

11. Don’t hold your baby down to help with a procedure. In fact, if your baby is a newborn, do not be involved in anything that will be uncomfortable for him. Do not be in his sight or let him hear your voice during any procedures. Your baby does not have a built up sense of comfort by your presence like a toddler would. You do not want your baby to associate any discomfort or fearful feelings with you.

12. Keep a journal. Write down names of nurses, doctors, medications, and procedures. Write down your feelings, your questions, your hopes, and your sorrows. Things blur together in the hospital and it might matter at some point that you remember things accurately.

Your Turn
Do you have some good advice for parents whose children are in NICU or PICU? Please share in a comment or let me know if you have posted on this topic and I will link to you.

Lisa, over at Finnian’s Journey, shared these sage words in a comment on the NICU Tour post,
“I would just add that new parents shouldn't be afraid to advocate for their baby in the NICU. When you're surrounded by so many authority figures in white coats, plus dealing with post-birth hormones and fatigue and perhaps a surprise diagnosis of Ds, it's easy to forget that you're actually this child's parent and that you have rights. Do your homework. Not every procedure is absolutely necessary, and some aren't even necessarily in your baby's best interests.”

Cori's post: Begging to Bring Joey Home
Lisa's posts: Advocacy Starts Early
                 Hospital Stay/Learning to Eat
Sasha's post: Our Heart Journey: Things I've Learned

Tuesday, June 16, 2009

She’s Gonna Be A Rockstar

Ok, or maybe she'll be a chunky thigh model.

It is natural to wonder what our children will become when they grow up. We nurture them. We provide them with early intervention. We send them to school (or educate them at home.) We teach and train them. We love and adore them. We like to imagine the possibilities. We hope for the best.

And, cough it up moms, we worry for them. I can’t tell you not to, but we both know it doesn’t do us any good. Our children will be fine. Our children will be artists, companions, public speakers, photographers, actors, mailroom clerks, musicians, cashiers, etcetera, etcetera, etcetera.

To give you a glimpse of the future, I’d like to highlight some talented people who are already grown up.

Michael Jurogue Johnson—Artist
Michael is a painter and illustrator. He works with watercolors, acrylics, and oils. Michael’s work is both expressive and lovely. On his website you can purchase original paintings, posters, note cards, or even commission a painting of your child inspired from a photo you provide. If you haven’t seen Michael’s work before, go visit his site. You will be impressed.

Karen Gaffney—Public Speaker, Advocate, Foundation President
Karen’s website describes her as dedicated to championing the journey to full inclusion for people with Down Syndrome and other disabilities. Karen will be speaking at this year’s National Down Syndrome Congress Convention as well as presenting at the World Down Syndrome Congress in Dublin, Ireland. She is also an olympic swimmer and has completed a relay swim across the English Channel. Wow.

Sujeet Desai—Musician
Sujeet is a musician (accomplished with six different instruments) who performs solo across the United States and the world. He is the winner of eight national and international awards. He will be appearing at this year’s World Down Syndrome Congress in Dublin, Ireland. He is one busy guy playing his music weekly throughout his local community, working in a library, practicing martial arts, and hanging out with his wife, Carrie (who is also a public speaker.)

I chose to give some detail about these three in particular because they are masters of skills I will never possess. I am “typical” but I will never be able to paint like Michael, swim (or open my mouth in public) like Karen, or play music like Sujeet. These are gifted individuals.

And you know what? Your child with Down syndrome is also gifted. Your role is to provide opportunity, to make room for that gift to grow. Someday your little Bob the Builder (ok, in this instance it's Brian the Builder) is going to grow up and contribute to the world around him in ways you can’t even guess today.

All photos used with permission.

Tuesday, June 9, 2009

10 Things Mama’s Gotta Have

I try to imagine what life was like for a mom 100 years ago. Honest to God, my great-grandmother must have been a saint to raise all those kids without baby swings, pack-n-plays, batteries, or premoistened butt wipes.

Fortunately we do not have to suffer like she did. Here are my top ten picks for making life with your new baby a little easier on mom (and dad!)

Infantino Peek-A-Boo Bunny Mobile

Each of my children got a mobile that matched his or her crib set. There were hanging bunnies or bugs that, when wound up, went round and round to a soothing lullaby. Nobody seemed all that interested in them. But when my little girl was doing time in the PICU, a nurse attached the Infantino Peek-A-Boo Bunny mobile to her crib and wow, she adored it. I liked it too. It plays your choice of three songs (15 minutes long), one of which is a very cute catchy tune that has baby laughter in it. It has two volume settings, a night light, and a remote. But the best part is the set of plastic bunnies with musical instruments that spin slowly around. Their ears flip over their eyes, whistles move, drums beat, faces appear and disappear. They could rename this the ”object permanence concept” mobile. 39.00 Amazon

BébéSounds Angelcare® Deluxe Movement Sensor with Sound Monitor

There is no reason to think that a baby with Down syndrome is at any higher risk for SIDS or any other sleep dangers but since we already have enough to stress about, I opted for this baby monitor. It lets you know, after 20 seconds, if your baby stops breathing. It has an amazing range of over 800 feet so I can go outside and work in my garden during nap time. I have had no interference or sound quality issues with the receivers. The only con with this monitor is that if you forget to turn it off when you take your baby out of the crib for a midnight feed, the whole house is going to know about it in 20 seconds! 103.99 Online

Rainforest Melodies & Lights Deluxe Gym

There are lots of nice baby gyms out there but this one is my favorite. It has lots of link points to attach toys to the mat or to hang them over and around your baby. There are several modes of lights and sound play, including a baby-activated mode which plays for about 10 seconds per toy yank. This is great for teaching cause and effect. The playmat is brightly colored, quilted, and easy to take off and wash. This gym has been the source of much entertainment for my daughter since before she could even roll over. I take it with me whenever I go to other people’s houses or anytime I take the pack-n-play, since it fits so nicely on the floor of it. 54.95 Baby Earth

Changing Table Mobile

Hmm, how do you keep your baby cheerfully distracted with her hands out of the goods during diaper changing time? Hang up a changing table mobile. I have had ours since baby number one and it has been a hit with all of them. This was the only toy that tempted my little girl to reach straight up against gravity when she still had little strength or muscle control. Ours has two bugs and a mirror toy that are attached by magnets. This allows her to pull the toys down and play with them while she gazes at herself in the mobile mirror. Unfortunately, I cannot find ours anywhere, new or used, so I have picked out what I hope is a close enough substitute, the Infantino Wall Mounted Mobile - Lion. 22.41 Amazon

Fisher-Price Rainforest Jumperoo

This is the perfect contraption for when your baby has enough core strength to stay upright and hold her head steady without support. 10 - 15 minutes a day in this jumper is a good way to strengthen your baby’s legs and encourage the foot stepping (pre-walking) reflex. Later on when your baby has good core strength, he’ll enjoy pushing off with his feet and bouncing himself like crazy. The jumper has lights and sounds with various settings, but my daughter favors the spinner filled with beads. 89.99 babiesrus

Space Saver High Chair and Booster

Sometimes children with Down syndrome have a hard time eating and maintaining core muscle strength to hold themselves upright. The Space Saver highchair has a 5 point restraint strap to help your little one stay well-supported while she focuses on eating. It also has a three position seat recline to give your baby more or less support as needed. The tray is wide and goes on and off easily. The seat cover wipes up nicely (but does make my daughter sweaty on her back if she is in it for a while.) For a baby who wants to eat but isn’t physically ready to manage sitting up unsupported through a whole meal, this is the perfect seat. The official description says not to use it for a baby who cannot sit unsupported but I am guessing they are referring to the booster chair feature. This chair was recommended by our physical therapist and has made a huge difference for my baby at mealtime. 48.88 Walmart

Infant Seat Cover

Babies are not as adaptable as adults to temperature change. They lose heat quickly and they overheat quickly. The infant car seat cover is great for keeping your baby bundled up from the cold yet can be opened up swiftly and easily when you are in a heated car or building. It is so much easier than wrestling with a snowsuit or multiple blankets. I prefer this model because I like to keep my baby’s face clear of fabrics and coverings but there are other options out there that close up. 29.99 babiesrus

Cuisinart Mini-Prep Processor

Sooner or later you are going to have to branch out beyond breast milk or formula. All those little jars of 1st, 2nd, and 3rd foods are going to add up, especially if you are going organic. And, after a while your baby will move beyond 2nd and 3rd stage but she might not be ready for what’s cooking for dinner in your house. Invest in a mini food processor and whip up homemade baby food with the perfect consistency to suit your baby’s development. Black bean soup, red beans and rice, white turkey chili... you name it, your baby can eat it once you’ve zipped it through the mini processor. The Cuisinart mini processor is small enough to store almost anywhere in your kitchen and it is easy to handle and clean up. 29.95 Amazon

Fisher-Price Ocean Wonders Aquarium Cradle Swing

I do believe I would have lost my mind sometime in the last six years if not for this swing. It swings side to side and front to back and has two recline positions. It has songs, lights, and a spinning mobile (none of which I ever use anymore.) The mobile part has plastic loops that are perfect for hanging links from and attaching all sorts of toys to entertain your baby. It takes four D batteries and they last for a good long time in it. There are some reviews that complain about the motor and our swing no longer has more than one speed but it does not matter, this swing is still the best baby apparatus ever created! The newer models (rainforest and precious planet) don’t sit the same or swing the same, or have those wonderful loops for adding links. 119.00 babiesrus


I confess... after my first child, I threw out both my Boppy and a lovely imposter pillow. I never used them for nursing and my typical baby didn’t need them for propping or playing. Then a few years later, along came my little darling who couldn’t do much of anything for quite some time. I ran out and bought a new Boppy so she could see the world (ok, the PICU) from a better view. At home she uses it for propping up on her back or front. I use it to keep her from rolling away when I want her to stay focused. I use it while she is in s supported sit to hold her toys up where she can reach them easier. It comes in handy during my physical therapy work with her as well. 25.00 for the pillow at Amazon, slipcover prices vary. 24.99 for the organic pea in the pod version.

Your Turn
Ok, bubble bath, chocolate, and ear plugs aside, what’s your “mama’s gotta have it” item? And, can anybody recommend a really good baby bathtub?

MaggieMae had a great idea... that we should all write our "Mama's Gotta Have It" posts and share them. She writes,
"and then the blogosphere will have some really useful hands-on, money-saving tips and product recommendations for all of us mothers of children with and without Down syndrome, with and without developmental delays, all with their very own flavor, talents and challenges..."

So how 'bout it? If you do it, let me know and I will link your post here.
MaggieMae: Down Syndrome Awareness -- Gotta Have Its AND How I Used Its!
Ria: Top 10 Baby Gotta-Haves
Lisa: Things Mama's Gotta Have

Friday, June 5, 2009

Picture Cards, Make Your Own

Language development... we’re all working toward it everyday with our children. We talk to them, sing to them, read to them, sign to them... But we know that reciprocation, our children being able to verbalize to us, comes later than their ability to understand language. So in the meantime we are teaching them other methods of communicating with us, using sign language and picture cards.

There are some good picture card resources out there. For free on the web, you can download and print cards from the See and Learn Language and Reading program. I like these cards because they use children with Down syndrome as models, the images are very realistic, and access to the cards is free. However, you still have printing costs, laminating costs, and the colors on the cards blend together too much, which I think might make object differentiation hard.

You could also purchase premade packs of First Word card sets. There are several packages to choose from, the colors are good but the sets are pricey and not all of the pictures in each set will be useful with every baby. Do I really care if my baby learns what a car key is?

To get the perfect set of picture cards for your baby, you have to make your own. It is easy to do and you will end up with a set of cards that is realistic, durable (chew-proof!), and specific to your baby’s world. When you make your own cards using your baby’s spoon, bottle, books, family members, etc., your baby can immediately recognize the object. Using cards from other sources means your baby has to be able to generalize that the picture of a cup is a representation of his cup. When your baby sees a picture of himself reading one of his books, it makes more sense than seeing a picture of just a random book cover.

All you need to get started is a camera, prints, and self-sealing lamination pouches.

Step 1. Take pictures of the objects your baby uses... his spoon and bowl, his bottle with milk in it, his cup, him reading his favorite book, you, his siblings, happy faces, sad faces, the family pet, toys, his crib... You can look at premade card sets to get ideas or jot down notes as you go through a couple days with your baby.

Step 2. Crop and print the pictures so that the object is the main thing in each picture.

Step 3. Laminate the pictures back to back so that each card has a front and back picture. Do not put pictures that could be offered as choices in the same pouch. You want your baby to be able to see both choices at the same time so that he can point to the card that has the object he wants.

Step 4. Show your baby the appropriate card prior to doing whatever is on the card. Before you know it, your baby will realize that the card represents the upcoming action or activity. Long before he can say he prefers an apple to a banana, he can choose the picture of an apple at snack time.

You can also use the cards when you are reading to help your child with generalization. When you get to a picture of a ball in the story, show your baby the picture of his ball. It is important that you also say and sign the word when you use pictures. Picture cards are a resource for enhancing language development and facilitating communication, not a total replacement for signing/speaking.

Your Turn
What picture cards are you using with you baby? Let me know and I will add a link here to your post about it.

Lori: Special Connection Homeschool: Introducing Reading with Sight Words
Perplexing Situation: Friday Organization