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.

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

Quick note for all of you Android Graci's Story app users. Please be sure to Refresh the app frequently in order to get new blog entries. They don't seem to update automatically for all Android phones. Simply touch to the right of the "Scroll Up Here" or use the menu option to "Refresh".

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.

Therapeutic Horse Riding

Our two-year-old Graci started taking Horse Therapy riding lessons in January 2011. It was recommended by her early intervention teacher, so we put her on the waiting list right away. She had a spot reserved within just a few weeks and we were so excited!

Below you will see some information on the benefits of Horse Therapy. We would recommend it to anyone! Besides the benefits listed below, Graci's confidence around animals has increased ten fold since she began.

Benefits
Therapeutic horseback riding benefits almost any disabling condition including: cerebral palsy, autism, down syndrome, head injuries, hearing impaired, visually impaired, multiple sclerosis, seizure disorders, speech & learning disabilities, and sensory integration dysfunction. The physical, mental, and emotional benefits of therapeutic horsemanship are many. The rhythmic motion and warmth of the horse stimulates and exercises the rider's muscles increasing mobility the pelvis, hip, and spine. The rider experiences weight shift and trunk mobility as if he were walking on his own.

As the horse and rider progresses through their different gaits, the rider experiences a wide range of sensory input. At a walk, the rider benefits from the calming effort of the rhythmic, three-dimensional movement. As the horse moves to a trot, the rider's alertness is increased, his posture aligned, and he becomes more aware of his own body. Riders respond to this movement. During the lesson, activities and exercises take place to encourage speech, identify objects, and sequence multiple tasks. Students also participate in games and socialize with other students.


Since this is a horsemanship lesson as well as a riding lesson, Graci is learning how to care for her horse, Poncho. At the end of each lesson, Graci is responsible for putting away her reins, counting carrots and placing them into a bucket, carrying the bucket to Poncho, feeding and petting Poncho and finally putting away the bucket.

In her first lessons, her instructor would carry Graci while performing all of these tasks. Now, Graci walks with her instructor while holding the reins and then the bucket in the other hand. She loves her lessons and practices saying and pointing "Go Poncho Go!"

Look for Therapeutic Horse Riding lessons in your area! We highly recommend this type of therapy.

Open Heart Surgery

In July 2011, it will be two years since our gorgeous little girl had open heart surgery to repair a VSD (Ventricular Septal Defect). This type of defect is a hole between the right and left vertical causing oxygen-poor blood to be pumped into the lungs. When the hole is large, as Graci's was, the heart tries to make up for the low oxygen levels and begins to pump too much blood into the lungs. Graci's was large enough at birth that doctors were confident it would require surgery to repair.

Interestingly enough, when typical babies are born with this defect, the surgery is usually performed within the first few days of life. When the baby has Down Syndrome, surgery can wait sometimes up to two years... giving the baby and his heart time to grow. The reason for the wait is because DS babies keep the pressure in their lungs (necessary for life in the womb) longer than typical babies. Why? We haven't found anyone that has answered that question. We like to believe that because 50% of all DS babies are born with a heart defect, it is a God given safeguard in order to give them a better chance at survival.

Cardiologist visits begin
Graci started seeing a Cardiologist within weeks of her birth. At each visit, she had chest x-rays and an EKG (or ECG for Electrocardiogram - the K is from the German word Elektrokardiogramm) both reviewed by her doctor. She had appointments every three to four weeks to monitor her progress.

Between the visits, we were to watch for shortness of breath, fast breathing, paleness, hard breathing, fast heart rate and sweating while eating. It was so frightening because we couldn't help but think, "What if we miss it? What if we're not paying close enough attention?" We were filled with fears and doubts, but with every visit to the cardiologist, we were a bit more at ease.

Incident
We did have a scare when Graci was six weeks old when she went a bit blue, followed by a strange transparent color. Even though she got her color back quickly, we still rushed her to Children's hospital where she was admitted and had to stay for the night. At least she was in the PICU this time, so we could stay with her.

After all the tests were complete, it turned out she probably had choked a bit on her formula, but was able to clear it herself. The best part about the visit with all of the doctors was learning that Graci indeed had a Gag Reflex. Apparently, this is one of those things that can be missing with these little DS babies. One more thing to make us hopeful and excited about Graci's progress.

Surgery scheduled
In late June 2009, we went for a Cardiology appointment and were excited to tell the doctor about all of the new things Graci was doing. He asked us questions and we answered like we usually did. He reviewed the x-rays and EKG and performed Graci's exam. Up until this point, we'd been thinking her heart surgery would happen some time in the fall. When he was done with the exam, he said it was time to schedule the surgery and it should occur within the next few weeks. Then he wrote a prescription for heart medications. She hadn't had to take them yet and we sure weren't prepared to start giving them to her. One med two times per day and the other three times per day. That sure felt like a huge responsibility.

Graci's heart surgery was scheduled for 16 July 2009. She has one set of Grandparents who live in the same city as well as two aunts and two uncles. Her Grandparents from Eugene, OR and aunt from Seattle, WA all planned to come down for the surgery as well.

Meeting with the surgeon
The day before surgery, we were scheduled to meet with the surgeon and his nurse to walk through what to expect and to go through all of the risks associated with the surgery. It was awful to hear about all of the things that could go wrong. They have to tell you everything because in the end, you have to give your consent to proceed. We asked at the end if he ever had anyone who didn't sign the consent form. He simply told us she wouldn't make it without the surgery and we tearfully signed the form.

The most important part of this visit, we learned the next day, was when they showed us a doll that had tubes coming from its belly, tubes down its throat, wires and more tubes coming from everywhere. He and the nurse explained what everything was for. And they said that when we see Graci for the first time after the surgery, she would be covered with tubes and wires and it would look pretty awful.

Prayers for Graci

Graci's Aunt 'Nise added a prayer request on Facebook a few days before surgery. One of her friends said she would light a candle and say a prayer at 8pm in her honor. That message turned into a candle lighting ceremony in several States and Countries around the world. The Moose Lodge in the small town Graci's mom grew up in held a candle lighting ceremony and had hundreds of written prayers for Graci. At our house, we had a friend of the family, who is also a pastor, come lead our prayer and candle ceremony. We felt so much love and were given so much strength from the worldwide event.

Day of surgery
The next morning we were up early and on our way to the hospital. We sat in the pre-surgery area with Graci while they checked her in, took her vitals and we waited for the surgeons nurse. There were lots of hugs, kisses and tears even before they took her away. The handoff to the nurse was absolutely awful and we decided no parents should ever have to do that. The nurse said she would page us when Graci was on the ventilator and heart bypass machine and then again when the surgery was over. Even today, two years later, the heartbreak of this moment still resonates.

They thought the surgery would take up to four hours, so we joined the rest of the family for the long wait. We walked to the chapel, prayed and cried for a while. We added entries to the prayer book and sat in near silence... through the sniffles.

We decided a walk outside would do us all good, so we decided to go across the street for a Starbucks. As we were walking out with our drinks in hand, the pager went off. We dreaded making the call because we really didn't want to know when our baby was on machines. Cole called the number. It had only been an hour and forty minutes since surgery was supposed to have started. You can imagine our complete shock when the nurse told us the surgery was over and she would be in recovery within 20 minutes. She said everything went so well and so quickly that she didn't have time to send the first page! Thank God for answered prayers!

Recovery
We were in the waiting area when we saw Graci's bed get wheeled by and on her way to the PICU. The surgeon and his nurse came in a few minutes later to discuss the surgery. "Everything went as expected and she did very well." Again the answered prayers!!! They said we could go in and see her within the hour. The nurses just needed some time to get her settled.

We made our way to Graci's room to see her for the first time without a broken heart. And here's where we realized how important that doll was that the surgeon had showed us the day before. She had tubes, wires, bandages and wraps everywhere. She still had the ventilator in and that just killed us to see. This might sound a little odd, but Graci had Grandmas, Grandpas, Aunts and Uncles there to see her as well. We decided it might be best to take a photo of Graci and text it to her Aunt in the waiting room. We saw that doll ahead of time and knew a little about what to expect. But, they hadn't and we knew it would be overwhelming for everyone. As hard as it was to see, they all agreed they were glad to see a photo before stepping into the room. Out of respect, that photo was of course deleted immediately.

We spent five days total in the hospital with Graci. Five days? How is it that these little angels can recover so quickly? Graci was off of the morphine drip on day two, had the ventilator removed on day three, the chest tubes removed on day four and was eating like a champ on day five! She made it through open heart surgery like it was nothing! All of our fears were gone just like that. What a blessing and what amazing surgeons to be able to perform heart surgery on their little tiny hearts. Unbelievable.


Now for the good stuff!
The thought of open heart surgery on your child... any child... is devastating. But, we've lived it and want more than anything to share the results with others who are preparing for this surgery. There is nothing that we can say to take the pain of the idea of surgery away, but we can go through all of the positives that we have experienced after having gone through it.

The first thing we noticed after her surgery, and this was just days after, was her color. She was actually pink for the first time ever! Our little porcelin doll was actually supposed to be pink! We hadn't realized this and were so surprised to see it! Graci's cardiologist said that was a common theme among his patient's parents.

Before Graci left the hospital, she was already off of one of the heart medications. And, within two weeks, she was off the Lasix as well. What a relief that was. We worried so much that we would miss a dose along the way.

Within five days of surgery, she was finally belly laughing. How fun to see her have the energy to truly belly laugh!

Graci was only four and a half months at surgery time, so she was still on formula. Before surgery, it would take her up to an hour to get through four ounces of formula. Soon after surgery she was eating six to eight ounces in 15 - 20 minutes! And, she was able to hold almost all of it down. She had a problem with projectile spit-ups out her nose and mouth, but after surgery, this nearly stopped altogether.

She really started working on her gross motor skills after surgery. She had so much more energy that rolling over became a much easier task and pulling herself up to stand on laps began to happen everyday!

These are all common occurances as shared at our family group sessions. If you have a baby in need of this surgery, we hope you will take comfort in Graci's story and that it will help you stay positive and keep the faith.

Meet Graci Nicole

Our beautiful Graci is now two years old. She has been such a blessing to our entire family and has really changed our lives in the most amazing ways. It's funny, when you first have a baby with Down Syndrome, you hear that statement over and over again. "She is a blessing and will truly change your lives." But, it's hard in the moment to imagine how much things will change. It is magical indeed... watching friends and family as their eyes are opened, minds are changed and spirits lifted just by being a part of Graci's life.

One of the best parts of having a child with a disability is the complete celebration of every single milestone. We celebrated when we saw her hands come to center, when she rolled over for the first time, when she transferred toys from one hand to the other, when she sat up on her own... every single little thing she did was celebrated. When you think your child may never be able to do those things, you really take notice when they do. That's part of the magic as mentioned above. Nothing is taken for granted.

In the past two years, we have made it through a stay in the NICU (Neonatal Intensive Care Unit), heart medications, open heart surgery, nasal issues, hematology issues, constipation, feeding issues and a complete lack of knowledge about Down Syndrome. We've worked with in-home early intervention, physical therapists, occupational therapists, speech therapists and even a massage therapist. It is unbelievable still that most of these therapies, at least here in California... (and at least for now - budget cuts are always threatening special needs care) are free. And that's a good thing too because we've also been faced with a job loss followed by a career change. International travel as a Software Consultant didn't really line up with the therapy sessions necessary for Graci. (Watch for a post on how we fixed the constipation, feeding and job loss issues)

We've decided to put this blog together to help guide folks who are pregnant with, have just had a baby with or who may be adopting a baby with Down Syndrome to help guide them through the first few years. There are so many resources available and early intervention is key to helping your baby get off to the best start possible. Graci is two now and we forget so much of the time that she has Down Syndrome. She's just Graci and we couldn't possibly love her any more!