Early Intervention is Key!

We've said it so many times throughout this Blog, "early intervention is key." That statement rang so true a few weeks ago at our Support Group when we had the opportunity to see one of Graci's new friends.

Our group took a three month break for the summer, so it was super fun to get back together to see the progress some of the little kiddos had made. The star of the show was a little 10 month old angel who had undergone her open heart surgery this past May.

As we were watching her go, we were reminded of the group session just before her surgery where her parents were nervous and listening to all input on the matter. It is always such an emotional discussion because all of us who have gone through it are taken back to those moments just before surgery and we remember how scared and unsure we were. It's nice to know so many people care enough to share their stories in order to help others get through the fear.

So, here we were watching this little 10 month old "go". Yes, you read that right... she was crawling on her hands and knees all over the place! Then, once she made it to an adult, she would reach out and when the adult took her hands or arms, she would pull herself up to a perfect stand!!! It was amazing and so inspiring to watch! She's only 10 months old!

We had the chance to sit with her Dad for a bit and found out that she is in Physical Therapy (PT) once a week and that is clearly helping her move from one place to the next. It was fun to listen to him tell his story about the things they are doing for their little girl to ensure she has the best possible chance while navigating her own life. Maybe we can get her parents to share their story here?

Check with your Pediatrician to see if starting PT (or other therapies) or if increasing the sessions might make a difference with your angel. Early intervention is definitely key!

The Long Road to Self Feeding

As we sit here on this beautiful September morning at our favorite local breakfast eatery, waiting for Graci's pancakes and fruit to arrive, we smile. The only worry is whether or not she will peel her attention away from the two year old friend she's just met at the next table.

"Hi Friend!" she says several times while waving. The gestures and silly giggles back and forth are only interupted by the occasional "Hi!" to new patrons and "Who zaat?" to us. The food shows up with the usual "Ooooooh!", which makes everyone smile and "Yummy, yummy, yummy!" upon the first taste. What did we ever do to deserve such a beautiful soul?

She starts with the fruit using her fork at first, but after a few missed banana attempts, she puts the fork down and uses her fingers. Mmmmmm... strawberries, bananas and blueberries! She loves them all. And while Mom is busy cutting up one of her kiddy pancakes, she picks up another and begins to take bites! "Babe... look at your daughter. She's never eaten anything quite like that!" Both of us quickly reaching for our phones to take pictures.

Hmmmm... maybe she's ready for a sandwich without it being cut into a hundred pieces? Currently, she eats lots of peanut butter and jelly sandwiches, but we are still cutting them into bite sized pieces that she can just pop one at a time into her mouth. Guess it's time to give her one half and see what she does with it!

How exciting to have these sorts of thoughts. For months and months the focus was "Will she ever eat?" and "Why won't she eat anything?" and the constant fear that she wasn't getting the nutrients that she needed. We often say Graci's feeding issues have been the most difficult part of the entire journey.

So what was all the fuss about? We just couldn't get her to bring food to her mouth. We couldn't get her to try new things. We were still spoon feeding her when

friends her own age were feeding themselves. It was heartbreaking, especially when she had done so well in everything else. It was comforting to learn that even typical kids sometimes have feeding issues and the percentage of special needs children needing therapy to aide in this area is quite high.

There are several reasons for a DS child to encounter feeding problems. Low muscle tone in their mouth and tongue makes it difficult to move food properly from one side to the other and makes eating exhausting; small and shallow roof of the mouth can leave little room for moving food; and even constipation issues make it very difficult to eat. It makes perfect sense really... it is difficult to put more food in when your tummy feels full.

Constipation was Graci's biggest feeding issue, with some low mouth muscle tone on the side. We didn't realize until the Occupational Therapist told us that Graci's constipation was holding her back from eating. We would put food in front of her and she had no desire to give it a taste. We would put food in her mouth and she would spit it out. In addition to having issues, she decided it would be fun to be very picky at the same time. This really is a terrible and most frustrating combination.

One of the things we noticed when trying to get Graci to pick up food and put it into her mouth was that when she was with someone other than "Mom", she seemed to try more. She was with Mom for meals 90+ percent of the time and may have made rebelling a bit of a game. When Grandma and Grandpa came to town to take care of Graci when her brother was born, Graci suddenly was tasting and trying almost everything!

If you are having feeding issues with your little angel, be sure to talk to your child's Pediatrician. They can recommend a feeding plan or will refer you to an Occupational Therapist. As with all issues, early intervention is key. Getting started early teaching your little one good feeding techniques will save you a lot of heartache in the long run. Also, if constipation is the issue, consider trying a teaspoon of NatraBurst mixed into your toddlers juice. (See Graci's NatraBurst Testimony at wwwGraciStorycom or in the left margin if you are reading this on the site)

Know that feeding issues too will pass. Your child will learn how to eat. It is just a matter or time and working with them to help them learn. We hope that by reading Graci's Story you will be inspired and even excited to know that indeed... things do get better.

Please Share Your Story

We have made lots of changes to our Blog at wwwGraciStorycom, so we invite you iPhone and Android Graci's Story app users to visit us often when you are online.

With Graci working on her walking every day, we've been reflecting on how far she's come... and how far we've come. We were talking last night about the early days, when we first learned Graci had Down Syndrome, and how much time we spent online looking for stories, pictures, really anything that would help us understand where we were headed.

We had hoped to have our spirits lifted, but instead so much of the time we were led to information that really made us even more uneasy. An example is ending up somehow on a memorial page when looking for information on Graci's heart condition related to DS. We decided that night to stop using the Internet to blindly search for information and instead to follow the guidance from her doctors. They led us to the National and Regional websites that would better answer our questions.

As a way to help guide parents, relatives and friends into the world of Down Syndrome, we thought it would be fun to dedicate a page to our Blog that will include pictures and a little story about your DS angel. This will be a separate page on our GraciStory website and will appear on the Android and iPhone apps under a new Menu item. Each picture and story will be a new blog entry for that page.

If you would like to participate, please send a picture of your child along with one or two paragraphs about your experience with your little angel. Please send via email to GraciStory @ gmail com. We are excited to hear about and help you share your story!

Another Milestone... Our Graci is Officially Walking!!!

When she finally did it, she was so ready! Four shuffle steps in a row all on her own. We didn't realize she was doing it until she sat down. Hmmm... she was just in the center of the room and got closer to us without help. Are we seeing things?

"Graci, did you just walk?" "Ya... ha ha ha ha!!!" "Can you do it again?" we said. "Ya!" she replied as she crawled hands and feet back to where she had started. Up she went... shuffle, shuffle, shuffle, shuffle! And then the belly laughing started! We clapped and cheered and laughed like crazy!

The next day, Tuesday the 30th, she stood up and took four big steps several times in a row! We were so excited to get it on video! She worked on it a few times and went back to playing with her toys. We immediately published the video to Facebook so the whole family could see! What fun to read the comments and realize how many people, friends and family, are out there cheering for Graci.

When she got up from her nap, it was time to practice again. Now she's walking like she's been doing it for weeks! Step... step... step...step... step... step!!! Unbelievable! She is so fun to watch and she's very proud of herself... as are we!

Today was day two of Graci practicing her new and most awesome method of transportation. She concentrates and really thinks through each and every step and loves the celebration when she stops. Clapping, one arm in the air saying "Woo hoo!" and getting up to do it all again.

She's already learned to turn; changing direction when necessary while continuing her steps!

Wow... tears as we realize we may be just a few weeks away from our dream. The one where we get to play chase with her in the park.


Watch Graci Walk - Video

For those of you who are reading this on the Android or iPhone app, you may not be able to see the video. Please visit us online at wwwGraciStorycom for more pictures, videos and information about Graci's Story.

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.

Follow Us Online

If you are reading this on your Android or iPhone app, be sure to check us out online as well. wwwGraciStorycom or send us an email at GraciStory @ gmail com.

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.