The Wobbly Road to Walking

"Come on Graci. You can do it! Take that first step girly-girl. Pick up your foot! Yay!!! Now take a step!"

That is our cheer-of-the-day today! And she is close... oh so close!

Graci's road to walking has been a long one for us, but for Graci... she's right on schedule. She definitely does things on her own schedule, and not a second before she is ready. Good for her!

She first started her forward motion when she was about 9 months old. She would lay on her belly and push herself forward with her toes. Over time, that turned into a full on army crawl, using her elbows to pull herself around. And she was fast! She could get to anything she wanted using mostly her arms.

She finally got up on all fours and started to crawl and we were so excited! She swings her head back and forth a bit to get her pony tail going while she crawls now, which is hilarious to watch. We can remember her being a bit timid when she first started crawling, going back to the army crawl when in a hurry, so seeing her being so carefree is sweet. Just before her second birthday, she pushed herself up into a hands and feet walk and started maneuvering around that way. We knew it would only be a matter of time until she finally stood up on her own. And we were right!

Within days of her walking on hands and feet, she finally started to stand up on her own! Graci now stands for long periods of time while working on her balance. She shakes toys, puts her hands up, dances, claps and laughs... all while standing all by herself. We help her practice by walking with her holding her hands; sometimes just with one hand! And, she has two carts that she pushes around both inside and outside. Those seem to really help her with balance.

Mobility with Down Syndrome can be delayed in some children due to poor muscle tone and sometimes excessive joint movement. Low muscle tone and joint issues leave them a bit unstable, making it more difficult to walk. It is very important to give your child plenty of floor time to help them in this development. Push carts and climbing toys can aide in this area.

Today, Graci has been standing up... concentrating a bit... lifting a foot... putting it down... and laughing! We've been encouraging, clapping and laughing right along with her and we're just so excited! Another milestone to check off the list. And we're close... oh so close.

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The Truth about Teeth

Really... along with all of these other genetic markers, Graci may not get any teeth until she's two? We learned that news early on, either through reading our Parent's Guide (given to us by the hospital in a small box that included the book and a baby t-shirt with the words "I'm Special") or possibly at our first DS Clinic at Rady's. Either way, that was a tough one to come to terms with for some reason.

She did start getting them before her 2nd birthday, but she welcomed two upper molars first. Typical babies start with their two bottom teeth followed by their two upper front teeth. Then, generally the top incisors arrive followed by the bottom incisors. Then after getting all of those teeth they finally get their molars.

Not these little Down Syndrome angels... they blaze their own trails and really don't see the point in being like everyone else. They do not have a set pattern of tooth eruption. One DS child might get molars first and another may get front teeth first. Other than it being a bit more difficult to eat, Graci has handled her teeth eruption pattern just fine.

She got her top molars first... then her bottom molars... then her front top teeth... then the bottom canines... and finally her top incisors. We have no idea which will come next. As with all of the others, it will be a big surprise. Of course, we're hoping it will be her bottom front teeth since they are still in hiding.

Another issue that sometimes occurs with DS children is they could be missing teeth altogether. This happens more often in people with Down Syndrome for some reason. Additionally, irregularities in tooth formation, such as small teeth and malformed teeth could occur. Roots are often small, which can lead to tooth loss from periodontal disease.

It is very important to start good dental hygiene early with your child. We were advised to get into a brushing routine when she was just six to nine months old. We had a finger brush and would brush her gums one to two times a day (without toothpaste). Graci responds very well to songs, so we would sing the same little song when it was time to brush. This helps them develop a routine and be prepared for what is coming.

When we started using toothpaste and a regular toothbrush, we moved the routine to after bath time, since she generally takes one in the morning and one before bed. Now, when we pull her out of the bath, she says "teeth, teeth, teeth!" and indeed it is time to brush. We let her take the first minute and then we follow with the tooth brushing song; making sure every tooth is nice and clean. We do laugh realizing how much our little Graci loves her bath time and loves brushing her teeth!

Welcome iPhone & iPad Users!
We wanted to give a quick shout out to all of our new iPhone and iPad users! Thank you and welcome!

To everyone following Graci's Story on your phone, please be sure to find us online as well at wwwGraciStorycom. There, you will find a long list of DS resources as well as an archive of blog entries. Please contact us at GraciStory @ gmail com if you have any questions or comments. We love hearing from you!

Saline Nasal Spray in Every Room!

One of the most important "Tips and Tricks" we can give you is to have a Saline Nasal Spray bottle in every room of your house! Searching for it at 2:00 am can be a daunting task, to say the least. We've fumbled around the house for the spray more times that we can count and have found ourselves frustrated beyond getting back to sleep after the search. When we finally bought several bottles and found a place in each room, our world changed considerably.

On our first visit to the Rady Children's Down Syndrome Clinic, we learned from the Ear, Nose and Throat specialist that Saline would be our new best friend. We learned it is very common for these little angels to deal with ear, nose and throat problems due to their narrow ear canals and smaller nasal passages. Using saline drops and/or spray helps keep stuffed up noses to a minimum.

When Graci was a baby, we would simply hold her, tilt her back and drip the saline into her nose. Then, and this came directly from the specialist, blow air sharply onto her face. This causes the child to attempt to take a breath in through their nose which gets the saline further up and into their nasal passage. Now, we use the spray function and simply spray it into her nose. In fact, when she sees one of us with the bottle, she leans forward and tips her head up a bit. It took her a while, but once she realized how helpful the saline was, she welcomed it!

There was a time that we were using the saline up to 7 or 8 times a day. When she had a cold or a stuffy nose, we used it as much as she would let us. We had been told it helps to keep them clear of nasal issues and to continue using preventatively, so we did. Since we used it so much with her, she got used to it and feels now that it's just a normal part of life.

We also keep the "nose sucker" (well, that's what we call it) handy. We bought a battery operated nose aspirator, but it really never did the trick. They don't seem to go in to her nasal passage far enough to work. We've tried several times and haven't had good results. So, we use... still use... the style given to us from the hospital.

Today, we really only use the saline and nose sucker on Graci when she is stuffy. We use it before she goes to bed and throughout the day as necessary. Sometimes we sit back and smile thinking back to those early days. It's amazing to see how far we've come and to know that we did it all... together!

Be sure to check with your child's Pediatrican. We do not claim to be experts in the field of Down Syndrome. We've just had a wonderful ride and are happy to share our experiences.

Beautiful Vacation... Glad to be Home

Now that our family vacation is over, guess it's time to get back to work and back to updating our story about our sweet little Graci-girl. She and her 6-mo-old brother did fantastic on our 3500 mile road trip to see friends and family in the Pacific Northwest. We've received so much love and support from our friends and extended family and it's just so fun to see them all interact with and be totally blown away by Graci's progress. We are all blessed indeed!

We've been getting back into the swing of things since getting home a few weeks ago. The kiddos are back on their wonderful, one long nap a day sleep schedule and Graci has been enjoying her nightly wave and cheer for Pat & Vanna on Wheel of Fortune. Can't wait for the day she actually solves a puzzle!

If you are reading this from your Graci Story Android App and would like to check in sometimes while online, go to wwwGraciStorycom. We've added some product information, including a nutritional drink that Graci uses to help her constipation issues and a Baby Signs book link. We will continue to add product information on relevant products that we have found useful. Let us know what you think! GraciStory @ gmail com

Android Users Please Refesh Frequently

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We are planning to have two to three new blog entries per week. If you would like to contact us, please send an email to GraciStory @ gmail com.

Thank you for the continued love and support!

Signing Leads to Potty Training

One day, when she was about 18 months old, we noticed Graci signing 'diaper'. We reinforced signing back and saying "yes, that's your diaper." "That's a clean diaper." or "Dirty diaper." We did this for a few days until we finally realized... she's giving that sign only when her diaper is ready for a change and sometimes while she's going! We started paying close attention and taught her the 'potty' sign. We would sign 'potty' and say "Graci goes potty!"

After a week or so, we introduced the potty chair. Since she could communicate through signing we could ask her, "Do you have to go potty?" and she would say "ya" or shake her head "no". Sure enough, when she said she had to go and we put her on the potty... SHE WOULD GO! Unbelievable! At 18 months!!!

Typically, potty training begins at about 2 years of age. We only started early because Graci "told" us she was ready. Graci now says "potty" and "poo" while giving the 'potty' sign when she has to go. She doesn't tell us every time, or we don't catch it every time, but at least she understands the concept and goes on the potty when we put her there.

Just another example of why you might want to use Baby Sign in your communication development with your child. Keep it simple... being consistent with 5 - 10 signs can really make a difference!

Contact Us
We are getting several comments and inquiries through the Graci's Story app on Android. If you would like to contact us directly we would love to hear from you. Send an email to GraciStory @ gmail com. We are open to suggestions on topics. If you have one and we have experience with it, we will include it in our Graci's Story blog.

Thank you all for your love and support.

Communication Through Signing

We've been signing with Graci since she was about four months old. Of course, in the beginning, we would simply watch Graci's in-home teacher sign as she spoke and played with Graci. We watched her intently and tried to pick up as many signs as we could, since she only came to the house once every two weeks. Between visits, we would use the signs we could remember and wondered if Graci was catching any of it.

Why Sign?
There are several reasons for learning to sign with your baby. The most obvious is that infants develop the fine muscles in their hands way before they develop those fine muscles required for speech. So, they are much better equipped to give you a quick sign than to use words to tell you what they want. For us, the thought that Graci might possibly be delayed in her speech was enough to turn us on to the idea. The frustration that comes along with not being able to communicate was something that we hoped to avoid with Graci.

If you think about it, baby signs are just another form of gesturing and they learn to do those anyway. How many times have you seen someone play "So Big" with their baby? Mom says "SO BIG" and baby throws his hands into the air to gesture how big he is. Babies also point to things and use their hands to try to give clues about what they want. When they can't get their point across, it can be very frustrating and that's when you might see a tantrum or two.

If Babies Sign, They Won't learn to Speak
This is a common misconception dealing with baby signing. In fact, we've heard that babies who learn to sign actually use their words sooner and have a bigger vocabulary than those who don't. Again, this is hearsay on our part since we haven't done the research to verify that statement. We are strong believers though that what you expect is what you get, so set your expectations HIGH and watch your baby thrive!

In Graci's case, she's always been such a little imitator, that she really picked up the signs quickly. She was able to tell us she wanted 'more'... more peek-a-boo; more row, row, row your boat; more piano... more of whatever we were doing. In the same way, she was able to tell us when she was 'all done'. When we started her on baby foods, she was able to use more and all done right away. By then, she was also able to ask for 'milk', 'juice' and 'drink'. The praise she received each time encouraged her to sign more and more.


Back to the speech issue... Graci now has about 30 signs that she consistently uses. She would use more if we would just learn more to teach her. Two weeks ago, her teacher was pointing at stickers and asked if she wanted the 'bird' sticker. When she said it she also signed it. Graci said 'bird' and signed it at the same time right back at her. She asked if we had taught her that one yet and since we didn't know the sign, the answer was no. In writing this blog, we just asked Graci "Can you say bird?" She looked at us and said 'bird' at the same time she showed us the sign. What a great memory she has! The point is, she is working on her speech even while continuing to sign. If she knows the sign, she does both. If she doesn't, she just says the word. If she knows the word, but doesn't say it, we encourage her to do so by saying "Use your words."

Graci's Words
Last night, we got a bit distracted getting ready for bedtime. Wheel of Fortune, Graci's favorite nightly show, was over and we were starting to clean up. Graci looked over and rested her tilted head onto her 'prayer' hands and said "night-night." When asked if she was tired she said "ya" and said "bye-bye" along with a wave to her little brother. She's been signing 'night-night' and lots of other words for a very long time. She's only just started attempting to say most words in the last four or five months. Speech is directly tied to feeding and we had big feeding issues with Graci. Within weeks of her grasping several different textures, food shapes and tastes in her mouth, her speech really started to take off.


Our absolute favorite signs now are 'please' and 'thank you'. She says "peas", but hasn't attempted the words "thank you" yet. She recently learned to sign 'sorry' to her little five-month-old brother. Remote controls to the head and finger pokes to the eye prompted our teaching her that sign. All typical behaviors, we are happy to report. The best is, she uses her thank you sign without being prompted. If she is handed something, she generally signs 'thank you'.

Baby Signing Resources
There are books and DVD's available at baby stores, book stores and libraries. We used "My Baby Signs Book" by Discovery Toys. One for Bedtime and one for Mealtime. We also used "Baby Sign Language Basics" by Monta Z. Briant. But mostly, we watched Graci's in-home teacher and started consistantly using the signs we could remember.



We also took a "Hanen Communication - It Takes Two To Talk" eight week course. This one class per week program helped us learn practical strategies to help Graci learn language naturally throughout her day. The It Takes Two to Talk Program teaches, step-by-step, how to become your child’s most important language teacher. Learning how to "OWL - Observe, Wait and Listen" to help us learn to follow Graci's lead in communication through play. Signing is simply a tool used to help reinforce this communication. We plan to add a blog specifically on the Hanen class, so watch for that soon.

Upcoming Blogs
Keep an eye on Graci's Story for information on the following subjects:
* Feeding Issues
* Hanen Communication
* Resources for a Down Syndrome child
* Resources for Families
* Will She Ever Walk
* Etc.