Tuesday, May 7, 2013

Time to Catch Up!

Wow, it's hard to believe it has been over 18 months since I've updated this Blog! I guess I've been busy... and yes, lots of things have changed. I thought I'd use this post to introduce myself as the creator and writer of this Blog. And, I'll start incorporating the rest of the kiddos as well.

I appreciate that you are taking a moment out of your day to learn a little more about me and why I choose to remain positive, optimistic and especially grateful even in the most trying of times. It just makes sense!

My name is Deborah Caswell, aka Graci's Mommy, and I am a Northwestern girl at heart, as that is where I grew up and have spent most of my life. I lived two years in Dallas, TX and returned to the Northwest in the Spring of Y2K (remember that scare? It sure proved to be profitable for a lot of Technology consultants and gave me a great platform to build a wonderful career. More about that later…) I currently live in San Diego, CA where the weather is great and the views are fantastic. And, it makes for a perfect visit when my family comes to town to spend time with my kiddos.

Speaking of kiddos, I have three – 16yrs, 4yrs and 2yrs. Two girls and the youngest is a boy… and they are just amazing. They have each, in their own way, taught me so much about Life, Love, Generosity and Respect than I could ever have imagined. I am so GRATEFUL for each one of them… they truly are my LIGHT.

When Graci was born with Down Syndrome, or Trisomy 21, in March 2009 it changed my life forever. In the BEST possible way! She has been such a blessing to my 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 thing to consider if one parent gives up a job or career to stay home and care for a child with a disability… or any child for that matter… is that it may be difficult to get back to work when you and your child are ready. Seeking at-home opportunities right away may be a good option for you. I’ve got some ideas on the right hand side of this page.

From International Software Consultant to At Home Entrepreneur

I’ve always been an Entrepreneur really. I can remember the Lemonade Stands as a kid and the Pet Rocks I used to paint and sell to the neighbors. I was eight years old and would knock on doors and show my painted pet rocks. The best part of that story is when I would paint more rocks the next weekend and sell them to the same neighbors over and over again. I can remember how great that felt to sell those rocks and how proud I was to earn that money. Today, I can’t drive past a Lemonade Stand without making a purchase and giving high-5′s to those future entrepreneurs!

In the early 90′s, I was introduced to Personal Development/Motivational books and tapes. The introduction was through a Network Marketing company that I became involved with, but never built the business. Instead, I focused on what I was learning through the books and tapes. My car became my University where I learned so much about how we really do manifest what we think about most. I began focusing on what I wanted with my career, and opportunities to climb the corporate ladder began to open up to me. I attribute my corporate successes to hard work and the BELIEF that I could do any task that was asked of me. Having the correct Mindset is definitely the KEY to success!

I became Self Employed in late 2006 and began working with clients in Europe. At the time, my daughter was 9 and we lived very close to her Dad and step-Mom. When I had to take one or two weeks to travel to Europe, my daughter simply stayed at her Dad’s house. It was a so nice to know she was in good hands while I was away working. And, when I had to spend eight straight weeks there, she was able to spend three of them with me with the help of my Sister who flew over and vacationed with her and my Mom who stayed and flew home with her. What fun we had while she saw all of London with her Aunt and once my Mom got there, the four of us took the Chunnel to Paris! What a great experience for my little girl. I am forever GRATEFUL to my family for helping to make this happen. I’ve learned a lot of very important lessons in my life. One of them is the fact that I took for granted the amount of help my daughter’s Dad and step-Mom were able to give while I flew back and forth to Europe for work. I moved to San Diego in 2008 and lost that support system, which ultimately made keeping up with my clients extremely difficult.

I am a firm believer in that everything happens for a reason and once you get through whatever it is, you are a stronger person for having gone through it. This BELIEF has helped me through so many crazy life events and I am so GRATEFUL for understanding this concept. After struggling for nearly a year to get to Europe each time my clients needed me, I was finally way too pregnant to fly anymore. We were about to have a little girl and were so excited to welcome her into our lives.

As noted above, little Graci was born with Down Syndrome and had a huge hole in her heart which ultimately required surgery to fix. (You can read more about this on the tab called Heart Surgery) When my clients in Europe got the news, they suggested I perform all of my tasks from home and were quite happy to continue working with me. I am still so GRATEFUL for the working relationship I had with the Project Teams. I took a month off and then got back to work on London time. Starting my day at 2:00 am so that I could be available to the project team and still be the main caregiver for Graci during the day. I know it sounds harsh, but now my struggle to get to Europe was gone and I was able to keep working. Life happens and when you choose to see the positive and work through it, it just gets better and better!

Nearly two years after Graci was born, I gave birth to our son. Perfectly happy and healthy and we were overjoyed. But, by this time, my projects in Europe were coming to an end and billable hours were about to go away. It was at this moment I realized I should have been working on a second home-based business to replace my income. I thought there would be a project 4, 5 and 6 to cover several more years of work, but with the state of the economy it just wasn’t in the cards. At this point, Graci was still receiving weekly in-home therapy, where I was learning how to manage her care and our newborn son was needing my full time attention. Finding another client who would allow me to work 100% from home proved impossible. And so began my search for the perfect home-based business.

I have found a Network Marketing businesses and several Affiliate Marketing businesses that I am currently enjoying. One24 is my favorite Network Marketing business as I love what the products have done for me and my family. I will be forever GRATEFUL for the way their flagship SuperFood product changed the course of Graci's life. She had struggled for two years with terrible constipation which led to an eating delay, which ultimately led to a speech delay. It’s funny the things you learn when you have a special needs child. Who knew when a child has an aversion to food it will likely cause a delay in their speech? I sure didn’t. Once Graci started eating a smoothie every day with 30+ SuperFooods – fruits, vegetables and brown rice protein, her stools became normal. Once her stools were normal, she started eating foods other than jar foods. (She was struggling to eat Stage 3 baby food at the time) And, once she was eating well, she started talking more and her speech really picked up! While I used to make a smoothie for both of my little ones each day, I now simply shake a scoop into water and I’ve replaced all juice in my house with this.

I am currently on the Advisory Board with this company and my focus really is to get the product, NatraBurst, into as many children possible before they get to school. What a difference the landscape of the classroom becomes when every child has had six full servings of fruits and vegetables with protein BEFORE they get to school. NatraBurst is a blood/sugar normalizer and since childhood diabetes is on the rise each year, this is a great tasting solution to the problem. I was happy to see the television program, “The Biggest Loser” finally tackle the Childhood Obesity crisis issue in it’s latest run. For more information on this issue and on the NatraBurst product, go to www.BeNatraLEAN.com. I am happy to answer any questions you have.

You Become What You Think About Most

Remember this… ‘Much gathers more and loss leads to greater loss’. Choose to focus on that which you want rather than where your circumstances may be today. Where you are today is not where you’ll be. Allow yourself to be inspired by the good and by the bad things that happen to you. What you learn is to hang on, hang in and have hope. Difficulties will surely become a great life lesson.

The intention of my Blog is to INSPIRE you to think beyond your current circumstances and to visualize yourself in abundance… living the life you have imagined. I saw a motivational picture on Facebook the other day. The caption read, “Frame every so-called disaster with these words: ‘In five years, will this matter?’ “ My answer to the questions is YES! It will matter because of the phenomenal lessons you will have learned because of having gone through it. Life is not the destination… it’s the journey. CHOOSE to enjoy it every step of the way in GRATITUDE and just BE HAPPY!

Thursday, September 29, 2011

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!

Saturday, September 17, 2011

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.

Saturday, September 3, 2011

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!

Thursday, September 1, 2011

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.

Wednesday, August 24, 2011

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.

Sunday, August 21, 2011

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!