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.