tag:blogger.com,1999:blog-36812194561015057462024-03-05T09:12:36.699-08:00blessed by LeoA family journal about life with our Leo, born with Down Sydrome on March 5, 2012.the Familyhttp://www.blogger.com/profile/13365899377819815539noreply@blogger.comBlogger41125tag:blogger.com,1999:blog-3681219456101505746.post-20538767800374969952014-03-03T20:12:00.002-08:002014-03-03T20:12:57.166-08:00the final countdown to another year"Your 23-month-old: Week 4", was the heading this time.<br />
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You know those weekly emails for parents of babies, where you can read little tidbits about what they should be doing, tips based on their age, or insight about what's right around the corner? I've been getting that weekly email from BabyCenter since I was expecting Leo. Sure, I kept up with them for most of the first year. Interested in the information and reinforced by where Leo was at in his milestones. But close to the first birthday, as Leo started to drift somewhere behind the expected milestones and the information seemed geared toward a toddler instead of my baby, I stopped paying attention and just started deleting them. </div>
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Until this one arrived. This one caught my eye. This one cemented the fact that my baby boy, my little guy, my now <i>toddler</i>, is on the eve of turning 2.</div>
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The countdown is now on like no other. The last "monthly" birthday has come and gone, 1 month old to 23 month old celebrations have passed, and soon he will only be 2. <i>Just plain and simple 2.</i></div>
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Excuse me as I get into my feelings...</div>
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Leo is my last. The last one to cuddle, to rock in the middle of the night, to play pat-a-cake with. Thank the sweet Lord he is my last one in diapers! But even still, he is the last to look up at me with that sweet little face and hold on to my leg, unable to speak yet what he really needs but able to communicate it with his eyes and his voice. The last one to drool on me, have the snot wiped away with my sleeve, to be carried around until my shoulders hurt, share with me those giggly belly laughs, and capture me with the rosy chubby cheeks and big blue eyes. To pull my hair, scratch my hands as I struggle to get him to sleep, wake me night after night after night with teething, scream when I put him down, and yes... he is my last baby. </div>
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And now, he is truly in the last few days of being my last baby, because in less than 1.5 more... he will only be my toddler.</div>
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With Leo, I've had a full two years to enjoy his being a baby. I think he knew that. With my first, I looked forward to each milestone and checked each one off like clockwork. For the second child, he flew through each milestone so quickly I barely kept up. With both, the year of being a baby whizzed by. But with Leo, he took his time and allowed me to savor each moment with anticipation and celebration. His time as a baby stretched fully through 23 months, but there is nothing I can do to slow down time or stop the process.</div>
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When you're expecting a child with Down Syndrome, you encounter lots different reactions and comments. One comment I remember is "you'll get to enjoy your baby longer." It was confusing to me at the time, but now I understand. Now I know, she was right. <i>Yes, I did.</i> Twice as long! I consider myself blessed.</div>
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Because now, my baby boy will be no more. My toddler who just began walking steadily at 23 months and is now walking all around the house, is walking right into a new phase. </div>
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I'm being honest when I say I'm sad to say goodbye to my sweet little baby... </div>
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yet somehow, I'm excited to welcome him to this new adventure of toddlerhood, and to see him growing into who he is meant to be. </div>
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<b><i>with love,</i></b></div>
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<b><i>Joyce</i></b></div>
the Familyhttp://www.blogger.com/profile/13365899377819815539noreply@blogger.com0tag:blogger.com,1999:blog-3681219456101505746.post-11316036825558327332014-01-21T21:27:00.005-08:002014-01-22T05:42:36.228-08:00A New Year. Leo's 2013 Wrap-Up!November and December were absolutely the busiest months of 2013... weren't they? Now that we're in agreement, it's time for Leo's 2013 Wrap-Up!<br />
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Backtracking just a little, Leo finished out October 2013 with a round of pneumonia. This was pneumonia round 4 for him. It made mom feel like a bit of an expert on the symptoms and luckily it was caught early. After a full month of antibiotics, it was time for another big surgery (number 2).</div>
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On November 20th, Leo had a combo surgery (two different procedures). First, surgery to remove lingual tonsils (his palliative tonsils were removed at age 9 months), clear out any regrowth of adenoids (there was none, <i>yahoo!</i>), and a deep cleaning of his ear canals for tubes to function well. The second procedure was bilateral eye muscle surgery to correct exotropia. Due to his low muscle tone, Leo's eye muscles were not strong enough to focus properly. Surgery to correct this will keep him from losing function of his eyes and losing actual eyesight. Both procedures were a big success, both immediately and on follow-up. The lingual tonsil removal was supposed to be an easier recovery than his first tonsillectomy, or at least it is for most. Being the usual "exception" that he is, it was just as difficult for Leo the second time around. He refused food, even strictly pureed or ice cream, for a full 15 days! He lost more than 10 percent of his body weight and looked pitiful. He also developed a respiratory infection right after surgery that led to the return of pneumonia (pneumonia round 5). Also in typical Leo fashion, he regained everything nicely and then some, and recovered well. </div>
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Another highlight of November was the Thanksgiving celebration with families of those kids featured in the Down Syndrome Guild 2014 Calendar, hosted by Elvis Andrus of the Texas Rangers baseball team. We were extremely privileged to be a part of this special event! Let me just say what a caring, loving, and selfless person Elvis Andrus is. He spoke about how he spent time giving and sharing with families of children with disabilities in his home country (Venezuela), and he wants to do the same for families here because he holds a special place in his heart for children with disabilities. Over the summer, he gave of his time for a photo shoot for the DSG calendar and connected with the little lady that he posed with. Because of that, he wanted to give more to the Down Syndrome Guild. Not only did he put on a beautiful, catered event for our families, he also gave us a spectacular gift basket and our Thanksgiving turkey. Without hesitation, I canceled my order with Tom Thumb (take note that Leo was less than a week post-op at this point!), and we savored our very first Kuby's smoked turkey. I'm now completely spoiled, because it was one of the best turkeys I've ever had! </div>
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Elvis donated $10,000 of his own money to the Guild. How cool is that??</div>
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Another special part of the evening was the amount of time Elvis took to pose for photos and give autographs. We, and especially our children, had his undivided attention for an evening. I loved seeing him carry on conversations with extreme patience, smile genuinely and hug freely. <i>He impressed me. </i></div>
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<b><i>Leo was a Superstar on the news in Dallas that evening! </i></b></div>
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Leo was only five days post-op for this event. We made sure he had plenty of pain meds on board before going. As you can see in his eyes, he was not himself. His eyes were still red from surgery and he just looked like he wasn't feeling well. He was such a little trooper, but the evening definitely had it's toll on him. By the time we left, he cried all the way home! It was one hour and 15 minutes in traffic with a non-stop crying boy. Pitiful... but a memorable time. We are just glad he won't remember being in pain!<br />
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December was filled with Christmas parties, Santa, a trip to see Ice at the Gaylord, and fun times with family. We had a LOT of family time (as our teenager will testify!) over "Christmas Break".<br />
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On Christmas day, Leo even opened a few gifts on his own this year. He still had the attention span of a one year old though. <i>Ha! </i> He really enjoyed having a lot of time to play with brother Seth over the break.<br />
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<b><i>Don't let this picture below fool you... he did NOT enjoy the cold air at the Ice exhibit....</i></b></div>
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<i>... and Santa was also questionable, but tolerable!</i><br />
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2013 went out with a bang when we celebrated Grandma Elsie's 100th birthday! After ringing in the New Year at the Hampton Inn and Suites in Kerrville, Leo had a blast at her birthday party on New Year's Day.</div>
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We were blessed beyond measure this past year. Looking forward to a fresh start that brings new adventures. I hope you will continue to follow Leo on his journey, as we share the story of how he blesses our lives every day.</div>
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Happy 2014!</div>
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with love,</div>
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Joyce</div>
the Familyhttp://www.blogger.com/profile/13365899377819815539noreply@blogger.com1tag:blogger.com,1999:blog-3681219456101505746.post-14544179500418166212013-10-13T20:43:00.001-07:002013-10-13T20:43:32.248-07:00other kids with special needsLast month, Chris and I had the opportunity to "take a break" and let the boys spend an evening at the Saturday Night Alive respite program at our church (<a href="http://www.fumcrockwall.com/" target="_blank">FUMC Rockwall</a>). It was great to know there were folks volunteering to take care of children with special needs and provide a fun time for them and their siblings so the parents could have a little time off. But even better than taking a break, this past Friday night I had the privilege of being one of those volunteers. <div>
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Friday night, I spent three hours with five very special tweens and teens with special needs. I've been wanting to volunteer for quite a while, mostly for my own selfish reasons. As I've said before, I often forget Leo has a disability. Since he's a baby, or actually a toddler now, I don't think we don't get the full picture of what to expect in his future yet. I've been curious to know what it is like to spend time with older children or teens with special needs? </div>
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I was a little surprised by what I learned. About the kids, and about myself.</div>
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<i>It hurts the heart when children with special needs cannot communicate their needs to you. </i> </div>
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There was one child in particular who could not communicate his needs. He was very happy when he arrived, but after spending some time around noisy toys and seeing it begin to rain outside, he became very sad. Sad to the point of tears and it broke my heart. We spent lots of time consoling him, and I had the chance to take him for a walk. Once we were in a quieter hallway outside the classroom he was much calmer. Was there too much stimulation? Was he afraid of the rain, that he could see outside the window? I couldn't help but wonder exactly what he felt not being able to directly communicate his needs? It really hurt my heart. He finished the evening in a smaller, quieter classroom downstairs and all ended well.</div>
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<i>There is immense joy from seeing a child with special needs accomplish something. </i></div>
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Even though this was my first night to volunteer, there were other volunteers who have spent time with these same children through both the respite program and through the community as well. One of the volunteers I was working with is a teacher at Head Start in Rockwall ISD. She joyfully shared stories with me of how far some of these kids have come along over the years - physically, verbally, and from a maturity standpoint. Stories from a child who was wheelchair bound all his life transitioned to orthotics and walking on his own, to another who went from totally non-verbal to communicating in phrases. Hearing her stories made me wish I had been a part sooner and witnessed the accomplishments! Which brings me to the next thing I learned...</div>
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<i>The teachers and support staff who work with children who have special needs do it because they love what they do, and they love the children. </i></div>
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As I already mentioned, I was paired with a teacher from the Head Start program. I also met another volunteer who works at the High School teaching teenagers with special needs, as well as another staff member from one of the local Elementary Schools who does the same. Why on earth would individuals who work such a challenging and exhausting job all week long want to volunteer at yet another program doing the same challenging and exhausting work? <i>For Free?</i> It's simple. They love what they do, and they love these kids. It really makes me happy and at ease to know I have teachers like this in our district to look forward to working with Leo!</div>
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<i>My least favorite thing that I learned... Spending time with older children who have special needs made me more aware of their vulnerability.</i></div>
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I have wanted to believe that Leo will grow up in the same world that Meris and Seth will grow up in. After all, we will give him all of the same opportunities as our other children. We will have the same expectations of him. But Friday night really brought to my attention the one difference Leo will have going against him - he will be more vulnerable to the world. If he is not surrounded by those who look out for his best interest, if he is not watched over by those who completely love him, he could very easily be taken advantage of. Materially, financially, or worst of all physically. <i>This scares me to death. </i> This is an area where I have to pray to God a lot, and trust that He will protect Leo any moment that I am not there to do so. It's because of this realization that I say I was "privileged" to work with these special kids. Their parents, with the same fears I have, entrusted the safety and well being of their precious children to me. That is a privilege!</div>
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<i>I learned that I loved working with these children. </i></div>
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They each taught me more than I expected, and I loved spending time with them more than I ever thought I would. </div>
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At the end of the night Friday, I was pretty tired. I looked forward to crawling into bed a little early, expecting Leo to crash since he was up past his bedtime. That didn't happen. Instead, Leo's teeth that are trying to pop through had no mercy. The teething erupted with a vengeance, leaving him screaming inconsolably for nearly two hours. I went from really tired to super exhausted! At first I thought - why now? I just gave three hours of my life to help other families take a break... and this is my payback? Then it dawned on me that this is the life. Now I know "teething" has nothing to do with special needs... but seriously, the moment made me realize in the life as a parent of a child with special needs, there is never a break. </div>
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So with that thought, I highly encourage you to consider volunteering with a respite program. There is such a need for this in all communities and they cannot continue to run without volunteers. Being a parent to a child (or in many cases children) with special needs is a very, very hard job. Parents need to know they have a break coming. A moment to take a deep breath and be relieved of their responsibilities. Time to reconnect with their spouse, or just time to relax. In the case of one family, time to go to the grocery store! Spending time with these children is eye-opening, yet so rewarding. </div>
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You won't regret it.</div>
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<i>With love,</i></div>
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<i>Joyce & Leo</i></div>
the Familyhttp://www.blogger.com/profile/13365899377819815539noreply@blogger.com0tag:blogger.com,1999:blog-3681219456101505746.post-17509539032795559782013-09-30T22:24:00.002-07:002013-09-30T22:24:56.195-07:0018 month milestones & surgery. Again!Day by day, there seem to be very few changes in Leo with regards to milestones (and btw, I decided recently I don't like that word - "milestones"!), but then months pass and <i>Boom!</i> I reflect on where he started and I'm amazed. Just simply amazed by this boy.<br />
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Last week, Leo had his 18 month checkup at the pediatrician. His recent accomplishments include speed army-crawling, speed-cruising, super-transitioning while cruising, and just the other day he let go of the wall so he could pivot his body and grab my hands. The little stinker with "texture aversion" who won't eat table food at home has also been taking bites of table food at school. According to his teachers, he does a great job mimicking his peers. He has tried macaroni, mashed beans, banana, scrambled eggs, and just today blueberry muffin. And he has made it clear that he does not like pears whatsoever.<br />
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He's proven to us recently that he can do more than we realize, even though he's still lacking some confidence. We now know we have to raise the bar and Leo will grasp to exceed our expectations! <br />
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So back to the 18 month visit, can I be honest for a moment? All in all, his check-up went really well... until a few days later when I caught a glimpse of his report from the pediatrician to Early Head Start. More than half of his developmental milestones were listed as "below expected range for age".<br />
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<blockquote class="tr_bq">
<i>This made me cry. </i></blockquote>
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Yes, I'm overjoyed by how well Leo is doing. On an "adjusted" chart, he is actually doing well for a child with an extra chromosome. The part that hit my stomach like a brick was the feeling that my baby boy was being judged. And yes, I love my pediatrician dearly. She thinks the world of Leo and is continually impressed by him. But to me, this piece of paper and what was written on it felt like the beginning of a trail of measurements that Leo couldn't live up to. Like a finish line set for the Hare, my little Turtle creeps along behind - albeit with the greatest of effort and the biggest of heart, ever trailing behind. So I'm not brought to tears often, but this did it.<br />
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On the same day of my pity party, came a return to the ENT doctor. If you've followed along previously, you may recall Leo had his tonsils removed (along with adenoid removal and ear tube placement) last December. He was 9 months old and afterward, developed a respiratory infection before being discharged from the hospital stay, became dehydrated, and developed pneumonia. All of these brought the most interesting Christmas gift of all - a Christmas Eve and Christmas Day stay in the hospital. This was really sad at first, but ended up making for a very memorable Christmas for our family, to say the least! (Read the post <a href="http://blessedbyleo.blogspot.com/2013/01/where-did-december-go.html" target="_blank">"where did December go?"</a>)<br />
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At the ENT visit last Friday, Leo returned to be evaluated for what we thought was re-growth of his tonsils that were removed, causing a restart of his moderate OSA (obstructive sleep apnea). He's been having pauses in breathing at night, with gasps for air again. After peaking in Leo's throat, Dr. Mitchell decided to do a scope to get a more accurate look. What we actually found out was this - Leo's palatine tonsils (the ones that are visual and removed with a standard tonsillectomy) which were removed last December did <i>NOT</i> grow back, but his lingual tonsils (which are usually too small to be seen on exam) became super-sized! <br />
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<b><i>Did you even know that we all have more than one set of tonsils? </i></b><br />
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<b><i>Neither did I!! </i></b><br />
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According to the world of ENT, it's somewhat common for the lingual tonsils to peak in size at adolescence, especially in children with DS and obesity. It is rare for this to happen to an 18 month old. Rare. But it happened to Leo.<br />
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In light of his OSA symptoms coming back, surgery has been scheduled for November 20th to remove the lingual tonsils. Leo <i>did </i>have eye surgery scheduled for October 16, and that has also been moved to November 20th so he can have both procedures back to back with only one sedation.<br />
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While we were initially upset by this news, we aren't totally surprised. Sure, I'd rather not see him go through another tonsillectomy because the recovery is really, really difficult at this young of an age. But I would rather not see my baby boy struggle to breath at night, and continually wake up because of the struggle he is having.<br />
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So, there you have it. What's happening and the explanation behind it.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxnHb239eAZp7qpQ_C0WakVB-CsbwIQ0Bu2eUmaohUJGJoVzd-1ah5Za2Fn49GH2nec4SVMIqEhorPynuSMSSsdEKjRJLRgGubxqbBqJPbFPhE-vwEhldaRosssSYEYoidsJIfqe5py3jc/s1600/18+months.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxnHb239eAZp7qpQ_C0WakVB-CsbwIQ0Bu2eUmaohUJGJoVzd-1ah5Za2Fn49GH2nec4SVMIqEhorPynuSMSSsdEKjRJLRgGubxqbBqJPbFPhE-vwEhldaRosssSYEYoidsJIfqe5py3jc/s320/18+months.jpg" width="240" /></a></div>
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Thank you for always keeping our sweet guy in your prayers. He will need more, come November!<br />
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<i>With love,</i><br />
<i>Joyce</i><br />
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<br />the Familyhttp://www.blogger.com/profile/13365899377819815539noreply@blogger.com0tag:blogger.com,1999:blog-3681219456101505746.post-30034282439230029012013-08-26T20:28:00.002-07:002013-08-26T20:28:48.670-07:00back to school we go!I couldn't help myself. Leo had such a great first day back at school (Early Head Start), that I just had to share.<br />
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A quick follow-up regarding the feeding plan... Leo's school has been <i>incredible</i>. They were able to set a up plan based on the current federal guidelines for feeding toddlers, and he is set with Gerber Graduates fruit/ vegetable pieces mixed with Stage 2 smooth baby food. This is totally similar to what we are doing at home (providing chunkier texture than Stage 3), and a great start to keeping his progress on track. We will still meet to set a plan that will grow with him and help challenge him toward overcoming the texture aversion and progressing toward full table food and self-feeding.<br />
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We also have a plan for mixing his thickened milk in the mornings in bulk and offering more of his sippy cup too (the other delay we've been working on). So I have to share - Leo took 2 ounces from his sippy cup at lunch, and a full 6 ounces from the cup during afternoon snack, meaning he had exactly <b><i>zero</i></b> bottles at school today! <i>Yippee!!</i><br />
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<span class="Apple-style-span" style="font-size: large;"><i>Sharing the rest of his day in pictures....</i></span><br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJoACyyzCRF968hWKHcebDP9knQ-MfyAQgsWLOV5QVY6e3jdf0HXI0PoxIXz5W3nJQItYKiqivliy6Ez5bd_r14GWJ1VSaCT4HsxJY2d8CYfZkFpzJ6UjwL-trKYGsrQMhXDIdmzjWWXwW/s1600/back+to+school+2013.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJoACyyzCRF968hWKHcebDP9knQ-MfyAQgsWLOV5QVY6e3jdf0HXI0PoxIXz5W3nJQItYKiqivliy6Ez5bd_r14GWJ1VSaCT4HsxJY2d8CYfZkFpzJ6UjwL-trKYGsrQMhXDIdmzjWWXwW/s320/back+to+school+2013.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">First Day - August 2013 (with sister Meris sophomore & brother Seth pre-K4)</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_CJwnmDXt-ni9HASXQaQrPez03h7PGyxGcyE6Zm4nk6icHPkdftv3qA0ngOAMIfMjGID75zMoEER71oqY1Qe_8g_fNJFPY-QU1SQ_QZQ_EAwCSg_z3s3PqUS-3xO9htZtmLJXYJnFCALo/s1600/leo+backpack+1.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_CJwnmDXt-ni9HASXQaQrPez03h7PGyxGcyE6Zm4nk6icHPkdftv3qA0ngOAMIfMjGID75zMoEER71oqY1Qe_8g_fNJFPY-QU1SQ_QZQ_EAwCSg_z3s3PqUS-3xO9htZtmLJXYJnFCALo/s320/leo+backpack+1.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">First Backpack!</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglV6gKQhb5YSqq5dZbWlDuktzmKGibsj54dNuIvEvJNu9NXb3RLtN6oqCb2ZvLdZL2VVimlqqLP7PvWYD44hfew1fPBu2CM7RHvjIEhdBVEkMNAEyTmN8EhR6_fZ0xWZw55dI-1iACc1-i/s1600/leo+backpack+2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglV6gKQhb5YSqq5dZbWlDuktzmKGibsj54dNuIvEvJNu9NXb3RLtN6oqCb2ZvLdZL2VVimlqqLP7PvWYD44hfew1fPBu2CM7RHvjIEhdBVEkMNAEyTmN8EhR6_fZ0xWZw55dI-1iACc1-i/s320/leo+backpack+2.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Happy to go back to school!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiv-7abR4v5ydveqyUF8HwJJVGO3g8Qiwefv4J2OhOo6mNQTdAbrvRSY-BeyFVs_P7ySuO348A3kebgo8seN_aeODSOaoz6iJk0lLg50eoci3YtB4_J9MC-C8dWWinA69IfWS7wGQPanF7_/s1600/leo+first+shoes+1.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiv-7abR4v5ydveqyUF8HwJJVGO3g8Qiwefv4J2OhOo6mNQTdAbrvRSY-BeyFVs_P7ySuO348A3kebgo8seN_aeODSOaoz6iJk0lLg50eoci3YtB4_J9MC-C8dWWinA69IfWS7wGQPanF7_/s320/leo+first+shoes+1.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Not so happy about his First Shoes....</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhr0EVJOVMaIcsRSyehgchECCoA-GjDbiopF5TBZLtMJdnCEDG3F1ph9HlhCza9V94xeZuHY9N0c5byF0TXHyPUDtIUvDjZOlhsnFdVcXMx_9JWyjK7ZTSbXKNWs4zQtB_xV312rPZyXnVr/s1600/michelle+2.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhr0EVJOVMaIcsRSyehgchECCoA-GjDbiopF5TBZLtMJdnCEDG3F1ph9HlhCza9V94xeZuHY9N0c5byF0TXHyPUDtIUvDjZOlhsnFdVcXMx_9JWyjK7ZTSbXKNWs4zQtB_xV312rPZyXnVr/s320/michelle+2.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Overjoyed to see Ms. Michelle!</td></tr>
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We are so excited that Leo's lead teacher is Ms. Michelle! She was his back-up teacher last year, so she knows him so well already.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXucDs5syMIt5eOZ8ZIXlzxKQiOvGhSl8kaSomcKWAebXY9PpPCp8byjT6hHcxreBXZNmFiCXp1BSC0uvIK3AaN09tpsDF-S9mMElN0-raEsg_E_EkwLUorCru1MeCtQkL8cWHFDpqVi19/s1600/michelle+1.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXucDs5syMIt5eOZ8ZIXlzxKQiOvGhSl8kaSomcKWAebXY9PpPCp8byjT6hHcxreBXZNmFiCXp1BSC0uvIK3AaN09tpsDF-S9mMElN0-raEsg_E_EkwLUorCru1MeCtQkL8cWHFDpqVi19/s320/michelle+1.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Leo's lead teacher for 2013-2014, Ms. Michelle!</td></tr>
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<span class="Apple-style-span" style="font-size: large;"><i>And now for the biggest news of all today... the text that brought tears to mom's eyes from Allison, Leo's speech therapist....</i></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpzPV2OCKbNQ2tT1WwJq4WLU8NR_S_w8fOCLITUBiqUZocWpMSwRWQa-H6dM16ELCahsqqipFI0j4-LjeD9-HpKSDP8cOFPlMl54AVdqNz1kNL3eiwoLdY5YchcXMVQFyh4qIFDmRaOln8/s1600/allison+ST+text+8-26-13.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpzPV2OCKbNQ2tT1WwJq4WLU8NR_S_w8fOCLITUBiqUZocWpMSwRWQa-H6dM16ELCahsqqipFI0j4-LjeD9-HpKSDP8cOFPlMl54AVdqNz1kNL3eiwoLdY5YchcXMVQFyh4qIFDmRaOln8/s320/allison+ST+text+8-26-13.png" width="213" /></a></div>
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We celebrate and thank God for every small victory. This is the <i>VERY FIRST TIME</i> Leo has swallowed a piece of "table food" as a self-feeder from his tray!! (Yes, they are the tiny, soft Gerber graduate apples... but we are overjoyed!) Yay for our Leo, we are so incredibly proud!<br />
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The little guy worked so hard and was worn out by the end of the day. </div>
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Goodnight, sleep tight, my sweet boy.</div>
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<i>With a happy heart,</i></div>
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<i>Joyce</i></div>
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the Familyhttp://www.blogger.com/profile/13365899377819815539noreply@blogger.com1tag:blogger.com,1999:blog-3681219456101505746.post-22196279484384504442013-08-25T21:35:00.003-07:002013-08-25T21:43:15.662-07:00goodbye summer, hello school plansIt's the night before the first day of school. Summer has officially <i>OFFICIALLY</i> ended. Wow!<br />
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I've been home with the kids this past week (on vacation - ha ha, that is more of a contradiction!) since Chris returned back to work the week before school began. After Monday at the water park, the rest of our week was filled with errands, therapy appointments, school appointments, and generally tying up loose ends to get all three kids ready for school tomorrow. Which brings me to Thursday....<br />
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Thursday was one of those enlightening reminders that I have a child with special needs. I say reminder because quite honestly, I tend to forget. On a day to day basis, Leo is just like my other babies were. He's inquisitive and determined, joyful yet ornery. I know he's hitting milestones later than his peers, but as his mom I guess I've adapted and adjusted to his daily life. Then Thursday came and it hit me in a way I wasn't prepared for.<br />
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Wednesday was Leo's back to school "home visit". He'll be attending Early Head Start again this year for daycare. They're a part of our school district program and have been a perfect fit for Leo since there is a 4 kids to 1 teacher ratio, staffed by certified teachers who are trained to work with children who have disabilities. During our visit, we reviewed Leo's progress from over the summer. On the plus side, he's gone from pulling to stand to now cruising. Big accomplishment! On the minus side, only baby steps dealing with his texture aversion and he still won't eat table food. In my mind, not a big deal - we'll improvise at school just like we have at home. In the school's books - this requires a host of planning, aka... meetings, paperwork, red tape. Three days before school begins!<br />
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Thursday consisted of a series of phone calls - the school Family Resources Specialist, the Program Coordinator, the Program Coordinator specializing in Disabilities, the Program Dietician, and finally our Pediatrician. Normally, this number of phone calls wouldn't bother me. But today, I felt my first twinge of "is this what I have to look forward to when Leo starts school?" The conversations included words like 'provisions', 'modifications', 'reimbursables' and phrases like 'federal guidelines', 'physician's orders'. Since the Head Start program is federally funded they must follow guidelines with providing food to the children. I'm not allowed to take food from home, and we have to rely on the school dietician to work with the cafeteria on a planned menu for him.<br />
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The problem is, "if" he picks up a bite of food from his tray and places it in his mouth, he refuses to eat it. He won't eat anything that's not mixed with a smooth texture by way of gagging and appearing as if he's choking.<br />
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The center can't allow outside food. The teachers can't mix and prepare Leo's food because they aren't certified for "food handling and preparation". The items Leo needs can't be purchased by the center without special approval because foods purchased must meet certain requirements for "reimbursement". The cafeteria who prepares the daily lunches for the children has to meet and agree to whatever "provisions" or "modifications" are being made.<br />
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Even though (after a full day of addressing this) we were able to come up with a temporary solution for this week (until meeting and coming up with a permanent one), all of these rules, regulations, and conversations left my head spinning and made me just a little emotional!<br />
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For my friends that have a child with a disability, especially those with children in school, have you been there? Are you feeling my "moment"? <br />
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But instead of curling up in a ball and waiving the white flag, <i>I had to find my bright side</i>. <br />
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<ol>
<li>Leo is blessed to have parents who will do whatever it takes to help him succeed.</li>
<li>We are blessed that the staff at Early Head Start love Leo and put his best interests at the top of their list.</li>
<li>There have been hurdles and there have been roadblocks in seeing milestones happen... Yet we have continued to see Leo overcome them. </li>
<li>God is on our side, and through prayer He has shown us this time and time again.</li>
<li>This too shall pass.</li>
</ol>
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This moment just might be small compared to the many we have to come, but I can't anticipate what is to be or be anxious about the unknown. What I <i>can</i> do is my very best job as Leo's mom, making sure he has every opportunity available to him for his success both today and in the days to come.<br />
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<i><span class="Apple-style-span" style="font-size: large;">I have high hopes for Leo this next school year. </span></i><br />
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"Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds for Christ Jesus." Phillipians 4<br />
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<b>A few fun highlights from Leo's summer of 2013....</b><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGAgrRu5TV9gfoFFFdN0q7STomEEzDcEmzb2WY4s-T5geCSAwW164EhkSa3dVD6-BVuAcKoUuFYtBtouKIbeIlylXtM_Wn-8eO7yzgWxI4pHQzmOGI1vTL9YbUbNZcR9uD5SL9eqsyM5Gt/s1600/IMG_4647.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGAgrRu5TV9gfoFFFdN0q7STomEEzDcEmzb2WY4s-T5geCSAwW164EhkSa3dVD6-BVuAcKoUuFYtBtouKIbeIlylXtM_Wn-8eO7yzgWxI4pHQzmOGI1vTL9YbUbNZcR9uD5SL9eqsyM5Gt/s320/IMG_4647.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My first "Family 5K" (the Must Dash Race, June 2013)</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqFey5jmxcaavbZLLzyM1LixhK_PjucWAFr4qEAFamymso7Wat8kMd0-0SC2nDfrG9Zv1DA9JiYiYcESqk03Whp-bJzJr33g6gWe6x53PxVEIhWmCUgcQSOSFsEilDA4koRY2lkkttD7k6/s1600/leo+swing+7-2013.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqFey5jmxcaavbZLLzyM1LixhK_PjucWAFr4qEAFamymso7Wat8kMd0-0SC2nDfrG9Zv1DA9JiYiYcESqk03Whp-bJzJr33g6gWe6x53PxVEIhWmCUgcQSOSFsEilDA4koRY2lkkttD7k6/s320/leo+swing+7-2013.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">First ride in a swing (Family 5k in July 2013)</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjROQZwzf1yC7mSFpU0q9xUWiN8pgpQwtkc92jliMjD8ga_SQzNzcRKZclgL2VNk6MRORH_dtglOUAeaxupGMLOWgFevx3JedKR3XrOp04w0rRowmPN5qfTYTVbJ4TSW_9NXF4CX5Qh-ah_/s1600/8-2013+2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjROQZwzf1yC7mSFpU0q9xUWiN8pgpQwtkc92jliMjD8ga_SQzNzcRKZclgL2VNk6MRORH_dtglOUAeaxupGMLOWgFevx3JedKR3XrOp04w0rRowmPN5qfTYTVbJ4TSW_9NXF4CX5Qh-ah_/s320/8-2013+2.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I had fun being silly with my sister Meris</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjoircHnD5ELUaID0_uTKE_7rWAZXSFWhtPhVmSz2RLaXf6y2lXz7e0_FdDwfLyqrgq88lZgyS1oqgiAeT9LFlGsm-QPsbo3W-UVdFrgsdJn4dGQ9Zrl-UKGgNn4WM6O107C42n4OVFQE16/s1600/boys+8-2013.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjoircHnD5ELUaID0_uTKE_7rWAZXSFWhtPhVmSz2RLaXf6y2lXz7e0_FdDwfLyqrgq88lZgyS1oqgiAeT9LFlGsm-QPsbo3W-UVdFrgsdJn4dGQ9Zrl-UKGgNn4WM6O107C42n4OVFQE16/s320/boys+8-2013.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I played with my brother Seth. A lot!</td></tr>
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<tr><td style="text-align: center;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjP94-78iBHaoTUxQTr15-Sp9bF_OWzhlWd0s0D1Z6_0QJas8lttSyKfA5YAbrcNhKNgTsnWdcwUuNJ2yHIdP6VvapoBheXsKSrag9QfW9eF5wmqZ5K-QQ6IvQcBE92Y02oQXoK8DrWDwfr/s320/leo+7-4-2013.jpg" style="margin-left: auto; margin-right: auto;" width="240" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I celebrated the 4th of July</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgggwEt8LkvOiQh9_uJTdQKR9qhnkPEN8NQa7ouD6f0kv9ex_nsFLmxS5wD3PHFd6ENfEvV56Rwx8DLstw_sUPUez4lmRqPXHqC56NGBJy1Mwj2ueo1kE9ytd9CJfR9x_1sL2Qwwgk5LQbt/s1600/leo+hams+orchard+7-2013.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgggwEt8LkvOiQh9_uJTdQKR9qhnkPEN8NQa7ouD6f0kv9ex_nsFLmxS5wD3PHFd6ENfEvV56Rwx8DLstw_sUPUez4lmRqPXHqC56NGBJy1Mwj2ueo1kE9ytd9CJfR9x_1sL2Qwwgk5LQbt/s320/leo+hams+orchard+7-2013.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I ate ice cream from Ham's Orchard (July 2013)</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">I had my first trip to the beach. (Family vacay 2013, Galveston Island)</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Good night Summer 2013. You wore me out!</td></tr>
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<b><i>With love,</i></b><br />
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<b><i>Joyce</i></b>the Familyhttp://www.blogger.com/profile/13365899377819815539noreply@blogger.com0tag:blogger.com,1999:blog-3681219456101505746.post-89002649365992474972013-07-18T21:33:00.001-07:002013-07-18T21:34:42.690-07:00summer fun = milestones galore!<div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">
Welcome Summer! Once summer arrived, somehow I missed a 15 month update. Can you believe Leo is already 16 months old? I'm happy to say he's striving toward showing his age. This summer, and even moreso the past few weeks, have been filled with new babysteps and milestones. Stay with me until the end though, if you want to see some super cute pics of Leo's first vacation!</div>
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Speaking of milestones, Leo is still army crawling and has really picked up speed. He's been pulling up to stand really well since the beginning of June, and we were starting to think he'd never show interest in cruising. In typical Leo (or DS) fashion, just when one starts to doubt or wonder if something will ever happen, there he goes. He took some steps last week while holding mom's hands, then a few days later he transitioned from one piece of furniture to another by taking a few steps, and finally... he is now holding onto the couch and starting to cruise along a little. What do you know... he CAN move his feet.</div>
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Leo is also making some new sounds, signing "all done", and making messes. Yes you read that correctly, he is literally finding everything possible to get into and tear apart. From emptying toy containers, to pulling things down from every reachable place, taking clothes out of drawers that are slightly open, even pulling things over on top of himself. Look out world, and anchor it all down... This boy is on the move!<br />
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Last but certainly not least, the funnest milestone so far this summer was Leo's first family vacation amd first trip to the beach... to Galveston, TX. I have to admit I was a little bit nervous about how he would travel, his reaction to living somewhere else for a few days, and what his opinion might be (if you don't know already, he is quite opinionated for a one year old...) of the sand, saltwater and hours in the sun. In continued Leo fashion, he never ceases to amaze us. Other than our first night of attempting a later dinner time which resulted in a baby meltdown, Leo was a champ. He adores the beach and had a lot of fun playing in the sand. And eating it. There was nothing but smiles and laughter in the water, even when the waves splashed saltwater in his face. I couldn't have asked for a more easygoing, laid back, and flexible boy. <br />
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Check out the fun he had...<br />
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<em>He even wore his hat without too much complaint!</em></div>
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<em>Loves, loves, loves his sister...</em><br />
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Happy to have him. Life is good!</div>
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<em><strong>with love,</strong></em></div>
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<em><strong>Joyce</strong></em></div>
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the Familyhttp://www.blogger.com/profile/13365899377819815539noreply@blogger.com0tag:blogger.com,1999:blog-3681219456101505746.post-52233519600104622382013-05-28T20:33:00.003-07:002013-05-28T20:34:27.513-07:00more belated... 14 month update!My, how time slips away! Leo is 14 months old, and really soon he'll be 15 months. Before that happens, I better write down a 14 month update. <em>I'll just pick up right where I left off....</em><br />
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Last month, Leo was scheduled for a swallow study based on recommendations from his pediatrician and pulmonologist. The swallow study was performed mid-April. Much to my surprise, we found out Leo is aspirating again. This time, we not only get to thicken but we have to thicken even more (the "honey" consistency). The recommendation was made to vamp up his therapy for dysphagia (weak swallowing) that he's had since birth. It took a while to find a home health agency on our insurance plan but after working that out, Leo had the evaluation yesterday for "vital stim". It's a special therapy to stimulate the swallowing muscles and hopefully increase their function. He should hopefully begin the therapy 2-3 times per week in just a couple of weeks. <br />
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Leo also went to visit Dr. Weakley at Children's for our second ophthalmology opinion. His opinion is ...to not rush into surgery. <em>Hooray!!</em> I always love hearing that. Especially since it's been less than 6 months since the previous surgery. We're now patching the left eye for 1-2 hours per day (although I admit, I've been a bad mom lately by forgetting more times than not...), and Leo will follow up in the ophthalmology clinic in July to see if there's been any change, good or bad. Surgery would likely not be performed until after he turns two years old.<br />
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Sleep study #3... the results are in, and Leo still has episodes of apnea. <em>Ugh!!</em> It's no longer moderate, it's now mild, but he still has pauses in breathing even after surgery to remove tonsils and adenoids. He's scheduled to see a sleep specialist at Children's tomorrow. I'm not sure what the recommendations will be at one year old, but it will be interesting to find out. Also on our agenda for tomorrow is a one year follow-up with the cardiologist. Leo will have a repeat EKG and Echo to see if there are any changes to the PFO (patent foramen ovale). It's actually a very common hole between the top two chambers of the heart. His PFO measured a little larger in diameter than most, but we are still hopeful that it may have closed on its own. Please say a prayer for that result tomorrow!<br />
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In feeding news, there are still baby steps being made toward texture. We found out during the swallow study that Leo has a "texture aversion". He gags just by feeling the textures on his tongue, before the food even gets close to his esophagus. We are still trudging through the tedious process of slowly increasing textures in his smooth baby food. Oh so slow....<br />
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On the physical side of things, just WOW. Leo has come along amazingly in the past six weeks! He is not only transitioning quickly from laying down to sitting up, he is army crawling swiftly like nobody's business. He also began pulling up to stand this past week and has been working on doing that with everything he can get his chubby little hands on! His crib, the coffee table, fireplace, brother's toddler chairs, the couches, the side of mom and dad's bed, you name it! The little boy is on a mission to not only stand, but try to climb or belly up onto things and also starting to move his feet a little into cruising mode. He has thoroughly impressed this momma with his physical determination! He has also given himself a few bruises on the face area when he loses balance, but cuddos to the little one for not giving up. <br />
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On that note, I close out with this total cuteness, from our friend Heaven's birthday party this month...<br />
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<strong><em>with love,</em></strong><br />
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<strong><em>Joyce</em></strong>the Familyhttp://www.blogger.com/profile/13365899377819815539noreply@blogger.com0tag:blogger.com,1999:blog-3681219456101505746.post-36481712119347409232013-05-16T21:05:00.003-07:002013-05-28T20:34:57.734-07:00the big ONE!Yes, it was late... but we still had to celebrate! <br />
Leo turned one year old on March 5, and we finally celebrated the big ONE in April! <br />
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<strong><em>A few highlights...</em></strong></div>
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<em> "I'm the Big ONE!"</em></div>
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<em> the Ladies love Leo!</em></div>
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<em>Leo and his best buddy, Josiah</em></div>
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<em>with sweet Carlee</em></div>
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<em>One of our favorite little ladies, Olivia!</em></div>
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<strong><em><strong><em>"You want me to eat Whatttttt??"</em></strong></em></strong></div>
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<em>"You want me to do whatttttt????"</em></div>
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<em> Big brother Seth is so excited that Leo finally got icing on his hands!</em></div>
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"Hmmmmmmm....."</div>
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Happy 1st Birthday to our sweet baby Leo!<br />
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The first year with Leo was so much fun...We can't wait to see what he has in store for us next...</div>
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<strong><em>With love, Joyce</em></strong></div>
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the Familyhttp://www.blogger.com/profile/13365899377819815539noreply@blogger.com0tag:blogger.com,1999:blog-3681219456101505746.post-69336142217707960842013-04-06T00:35:00.003-07:002013-04-06T00:44:18.758-07:0013 month updateAnother month has come and gone, and our little Leo is now 13 months old! So what's he up to, you ask?<br />
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As of the moment (seriously, like this VERY moment...), he is wide awake at 2:00 am working to cut another one year molar. That's right, the first molar finally broke through some time recently! I just noticed that a couple nights ago. So now, he's working on the second. In typical DS fashion, he is officially getting his teeth out of order. He has two tiny teeth on the bottom front, and one "1 yr old molar"! Maybe now he will try to chew something.<br />
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This month has been a little more eventful than the previous one. He began with a respiratory infection which turned into a second round of pneumonia, but also added a GI illness (like rotavirus, with vomiting and diarrhea) on top of that. That was our exciting Spring Break! That was also in the midst of about 4 weeks of uncontrolled wheezing. A visit to the pulmonologist helped with a stronger dose of Symbicort and added Ipatropium for breathing treatments. <br />
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At the advice of both his pediatrician and pulmonologist, Leo is scheduled for another swallow study coming up in April. With two rounds of pneumonia within just a few months the concern is that he's aspirating liquids. He's always had a weak swallow (we thickened for like forever...), and previous studies showed traces of aspiration. We're going to check and see if that's reoccurring or worsening. <br />
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In my previous post, I gave an ophthalmology update. Leo has extopia, a form of strabismus, where one or both eyes look outward due to weak muscles. His right eye is mainly affected so we're patching the left eye for 30-60 minutes a day, but haven't seen any improvement. His left eye is also at the beginning stage of being affected. Leo goes to see his regular ophthalmologist (Dr. Weakley) in a couple weeks and we'll see if he agrees with Dr. Wang about scheduling surgery. <br />
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We also finished the month of March with Leo's post-op sleep study (Study #3). It's a follow-up to see the results from his T&A (tonsillectomy and adenoidectomy, for obstructive apnea). I was super dreading it since Study #2 was so awful with him waking up no less than every 15 to 30 minutes; but ultimately, it ended up being more like our experience with Study #1, so that was great! Don't get me wrong, <em>still</em> sleep deprivation for mom... but at least I actually had an hour here and there. The technician said he looked good with just a little central apnea and only two times with oxygen saturation levels dropping into the 80's, so it sounds like a huge improvement to me. We should get the official results at the end of April.<br />
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For some other fun news... Leo officially ditched the formula and is on all whole milk!! As exciting as that is, it really stinks when he spits up. Literally.... <em>stiiiiiinkyyyyyyyy!</em> Seriously, I'm so excited for him. He transitioned like a champ in just 4 days total. He's still having a hard time with "chunks" of food, gagging and nearly choking, so no finger foods yet. But he's been doing better with stage 2 1/2 and some stage 3 baby foods. At least there are baby steps happening...<br />
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He's getting really close to succeeding on the transition from laying down to sitting up, and also really close to making baby steps (<em>or baby crawls</em>!) toward real crawling. Still lots of army crawling and getting a little faster at it! He likes to get on his knees and think about trying to move his knees forward. Sometimes it looks like he's just gonna take off... but then he falls onto his belly. At least he's thinking about it!<br />
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Needless to say, based on our little reports, speech therapy and physical therapy are going well. He's at one visit per week on both of those right now. We're super thrilled that Leo's occupational therapist is back from maternity leave and started working with him again this week! We really missed her, and now Leo will get to work even harder toward his new goals because at his one year evaluation, he met all of his previous goals. (<strong><em>Big fat yayyy</em></strong>!)<br />
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The first year with Leo was quite a challenge, and the second year is also starting to shape up a bit challenging, but it has already proven it will also be tons of fun. Once again, I want to thank each of you - friends and family - for following his journey. Most of all, thank you for keeping our sweet boy in your thoughts and prayers at times when he needs them most.<br />
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Soon to come.... I'm going to be prodding Dad and Sister to post a thought or two. Hopefully that will be coming soon! For now, another attempt to get this little boy to sleep...<br />
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<strong><em>With love,</em></strong><br />
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<strong><em>Joyce</em></strong>the Familyhttp://www.blogger.com/profile/13365899377819815539noreply@blogger.com0tag:blogger.com,1999:blog-3681219456101505746.post-64386009974801216482013-03-27T21:00:00.004-07:002013-03-27T21:01:42.872-07:00patches and prayersToday, Leo had a little visit back to the ophthalmology clinic at Children's Hospital. He was checked out at 6 months old and his eyes looked great. Then some time between 8 and 9 months old, it looked like his right eye started to drift outward when he looked at us. It only happened every once in a while so at first we even questioned ourselves about whether it was really happening! As time passed we began to notice it more and more...<br />
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At his 9 month check-up (when he was actually 10 months old), I mentioned it to his pediatrician. She gave us some guidelines to go by with the glare for overhead light to make sure we were actually seeing the drifting. This confirmed we were. By 12 months old, the drifting happened more often and was more obvious.<br />
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So today, when we visited the ophthalmology clinic at Children's, they confirmed he has <strong><em>exotropia </em></strong>(a type of strabismus). It's a condition that affects the eye muscles and causes the vision to not be in the proper line. His right eye is in the second stage, which means it has moved beyond when he is tired, sick, or excited, and now occurs just on exam by the doctor. Also, his left eye is slightly affected and it's possible it might worsen like the right eye did. <br />
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<span style="color: #38761d; font-size: large;"><em>So what does this mean?</em></span><br />
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<em>Arrgghh... </em>daily patching for 30-60 minutes per day for the next 6 weeks. Then a decision to be made about surgery. He wasn't too thrilled about this at first... but after about 10 minutes (and a big fat bottle) he got used to it!<br />
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Since the left eye is also showing signs of being affected, the patching probably won't give much improvement. But we're willing to give it a shot if there is any way to try and avoid another surgery! At this point, he'll probably need surgery within the next few months. If the condition isn't treated and gets worse, Leo will be at risk of "amblyopia" (loss of vision due to disuse). So of course we don't want to mess around with that.<br />
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So, please keep our Leo in your prayers. We would sure love a miracle to correct things for him!<br />
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<strong><em>Joyce</em></strong>the Familyhttp://www.blogger.com/profile/13365899377819815539noreply@blogger.com1tag:blogger.com,1999:blog-3681219456101505746.post-37163018983082519502013-03-26T19:33:00.001-07:002013-03-26T19:33:03.853-07:00*milestone alert*...baby on the move!If I can be honest for a minute, I try not to compare Leo to other babies. I know by the nature of his extra chromosome that he'll take a little longer to do things, and that's really okay. But sometimes, I just forget how old Leo is. If I were judging his age based on milestones, my guess would be about 9 months. If I can be even a little <em>more </em>honest, I do find myself capturing comparisons to his brother and sister. Being a mom to three, isn't that just natural? <br />
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<em><span style="color: #0b5394; font-size: large;">Just to put things into perspective...</span></em><br />
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When it came to crawling, it seemed to take Meris forever! She was pulling up and cruising for a couple months. I thought for sure she'd walk without crawling. Then one day, at the ripe age of 11 months, at a music festival in Telluride, Colorado, she began to crawl. Then along came Seth... who did everything so quickly, I found myself saying "is he old enough to do that already??" He began to crawl at around 8 to 9 months.<br />
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And there is Leo. Sweet baby Leo has worked so hard for every milestone. I find myself implementing so much patience that when he achieves something it seems to catch me by surprise. Like he did about 2 weeks ago. I wasn't prepared to catch it on camera the first time around, but tonight I did...<br />
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<em><strong><span style="color: #4c1130;">My little man the army crawler!</span></strong></em></div>
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Leo works <em>so very hard</em> to achieve milestones like this, and we are so incredibly proud!<br />
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:-D<br />
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<strong><em>Love, Joyce</em></strong>the Familyhttp://www.blogger.com/profile/13365899377819815539noreply@blogger.com1tag:blogger.com,1999:blog-3681219456101505746.post-4259068662902652482013-03-21T23:00:00.003-07:002013-03-21T23:00:44.102-07:00first haircut. the big reveal!In celebration of 3:21 (World Down Syndrome Day - 3 copies of the 21st chromosome), Leo wanted to get all dolled up to show off how he rocks the extra chromosome. <br />
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So, I guess it's time for The First Haircut...<br />
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At first, he was a little bit excited about it!<br />
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Very quickly, the excitement turned into squirming...<br />
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But it didn't take long for baby Leo to look like a big boy...<br />
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More super cute pics of the new big boy cut to come!<br />
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Happy 3:21, my friends :)<br />
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<strong><em>love, Joyce</em></strong>the Familyhttp://www.blogger.com/profile/13365899377819815539noreply@blogger.com2tag:blogger.com,1999:blog-3681219456101505746.post-18068570721642532132013-03-17T21:22:00.003-07:002013-03-17T21:23:46.520-07:0012 months - from quiet to chaos!The time came and passed, quickly and quietly as can be, in the blink of an eye our little Leo turned one year old. Twelve whole months, just like that! In addition to his First Birthday....<br />
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There were many other really fun firsts this month. Like his First Train Ride...<br />
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First ride in a shopping cart...<br />
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First trip to the waterpark (Great Wolf Lodge, to celebrate the kickoff of March bringing in "World Down Syndrome Day")..<br />
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and First Circus... (Shrine Circus, complements of the Down Syndrome Guild of Dallas!)...<br />
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All of these things, in addition to the routine PT/OT/Speech therapies, follow up visit to the GI doctor, and one year well check-up, made for a fun and relatively "quiet" month. Until after the circus, that is... because after the three ring circus, came full-blown chaos!<br />
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Literally...after the circus, by the end of the day, Leo had vomiting, diarrhea, and a fever of 103.4. Long story short, following two weeks of fighting congestion and respiratory infection he developed pneumonia. (Our second time to battle this!) He also picked up rotavirus somewhere along the way. It was a week-long battle of germs, fevers, breathing issues, and Leo feeling yuck. <br />
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The really cool thing about Leo, though, is that no matter how bad he feels and no matter how sick he gets, he finds some time in there to feel and act okay. In those moments, he showed off a couple new milestones! That's right, I said our sickly little boy met some other firsts this past week, and I mean <em><strong>milestones</strong></em>.<br />
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Like ARMY CRAWLING. Little boy who didn't want mommy to put him down had to sit in the kitchen floor as she is trying to draw up more medicine for him. Big brother Seth tried to distract him with toys, but quickly decided to take them away. So what does Leo decide to do? Get down to belly time and scoot himself around the floor trying to get toys from his brother. Along came the Army Crawl! Mom is still trying to capture this on video...<br />
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And what's a sick week without a second milestone? Leo now waves "hi"!<br />
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This one is in the pediatrician's office, right before getting the chest xray showing the nasty pneumonia. <br />
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Wouldn't you say we have one friendly, crazy, amazing and adorable little guy? Yes, I do think so.<br />
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<strong><em>with love,</em></strong><br />
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<strong><em>Joyce</em></strong><br />
<br />the Familyhttp://www.blogger.com/profile/13365899377819815539noreply@blogger.com0tag:blogger.com,1999:blog-3681219456101505746.post-46251966496006004452013-03-04T22:27:00.000-08:002013-03-04T22:39:38.091-08:00the birth story<div style="text-align: left;">
I've read several birth stories from other families who delivered (unexpectedly) a child who they didn't realize had an extra chromosome. As for us, we already knew our Leo had a little extra something special. So when it comes to Leo's birth story there are no days of worry and surprise, no moments of disbelief and fear. In fact, we had five whole months to know about, adjust to, and check on the health of Leo with regards to his Down Syndrome. We had plenty of time to carefully plan for his safe arrival. Because of that, I'm now a firm believer that there are great benefits to knowing ahead of time the makeup of your baby... but that, my friends, is another blog post in itself.</div>
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Instead, I want to tell Leo's unique birth story. Because while we attempted to know everything we could about him and be totally prepared to joyously welcome him into this world, when it came time for Leo's birth, well... God taught us that we were most certainly <i>NOT</i> the ones in control. And here is Leo's story...</div>
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It was March 4, 2012, the last day of week 36 for this very pregnant momma. I had been nesting off and on, to the point of beginning to make sure loose ends were tied at work each day before I left and that everything was already packed in my car for the hospital. Since Meris had arrived at week 36 on the dot (almost week 29...), and Seth had arrived at week 37+2 days, I knew Leo would come any day now. March 4 was a beautiful Sunday from what I can remember, a nice chilly spring-ish day. </div>
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We had gone to church on Sunday morning as a family, and it was now Sunday evening. Chris and I went to church again leaving Meris to wait for Youth to begin and dropping 3 yr old Seth in the childcare room with his dinner. We headed over to the building next door for a Bible Study and dinner, meeting up with friends. After the Bible study, we walked to the main building to pick up Seth. The lights were off in this area as we walked to the entrance we needed, only to realize the doors were locked. I was achy and tired from a long day. "Why don't you cut through the playground to get to the front of the building, and I'll drive around to pick up you and Seth", I said to Chris. He agreed and I was happy not to have to walk any farther!</div>
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He went through a gate and began to walk through the playground toward the front of our church as I walked to the driver's side of our van which was parked in the dark only a few feet away from me. Before I could realize what had happened, I felt my feet taken out from under me as I tripped. I felt my body go up in the air and down toward the ground almost in slow motion, and instinctly put my arms down to try and catch myself... but it was no use, as I landed with all my weight flat on the right center of my pregnant belly. I didn't realize there was a parking barrier/block in my path to the car door, which I had tripped over in the dark. I was startled, shocked, and in pain, but managed to call for Chris "I fell!" He came running back toward me. </div>
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With my stomach immediately beginning to tighten and soreness coming over me, he managed to pick me up and help me into the van. We were both frightened and trying to decide what to do as quickly as we could. First task, gather our children. After a quick drive around to the front of the building, dialog with friends, confusion about what we should do and which hospital we should go to (nearest ER, or the planned birthplace - a 30 minute drive), we decided to leave our children at home with friends and make the trek to the planned birthplace. My fear was being admitted and possibly giving birth at the local hospital, instead of our planned location which had a level 4 NICU.</div>
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We arrived at Presbyterian Hospital of Dallas with me in tears and with Chris in a lot of fear. I hadn't felt Leo move since the fall. He had gone from completely active to completely still, and it was scary for both of us. Here we had spent months carefully watching Leo's organs, planning for his health needs, and making sure his little nest inside of me was perfectly cared for...only to come this far and possibly hurt him with a fall on the hard asphalt? It was heartbreaking. Once we began to get settled in the Labor and Delivery area, I realized I had cuts on the hand, knee and foot of the side that I fell. I told my story about the fall over and over to multiple staff, as each one got involved in my care. I thought, "wow, can't they just read the note? Or maybe no one has had time to write one..." Although later Chris and I discussed how they probably had to make sure this wasn't an instance of abuse but having me tell the story over and over, looking for things that might not match up. How sad!</div>
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Soon after our arrival, I began to feel Leo move occasionally. On the monitors, he looked great. Blood was drawn to make sure there was no bleeding occurring by me and by him. One of the perinatologists from the practice who had followed me came in to perform a level 2 sonogram and check in on Leo. It showed that his status was beautiful! With every test, I began to relax more and with every relaxing moment, I ached more from the fall. </div>
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The perinatologist decided to keep me overnight for observation, since there was a chance the fall could set off labor and I was already having mild contractions. Since our drive to the hospital is 30 minutes and I am known to be a very fast laborer, she didn't want us to worry about having to drive right back in. Chris and I settled in to an overflow area and the monitoring continued. </div>
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Soon it was early Monday morning, which quickly turned into almost noon. My OB rounded to check on me and saw that I was actively contracting. She said this could also be caused by dehydration, so she ordered an IV for fluids and said she would check on me in a few hours. If I was still in active labor, we would follow through with our planned c-section. Wow....that was hard to believe! But when she returned around 4pm and confirmed that I was not only continuing to contract in active labor, but had continued to dialate, we were immediately taken to labor and delivery to prepare for Leo's arrival. </div>
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<i><span class="Apple-style-span" style="font-size: large;">After one very sleepless night....</span></i></div>
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<i><span class="Apple-style-span" style="font-size: large;">At 5:27 pm.....</span></i></div>
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<i><span class="Apple-style-span" style="font-size: large;">We welcomed this little bundle into the world!!</span></i></div>
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<i><span class="Apple-style-span" style="font-size: large;">Leo John Christopher Ghormley, weighing in at 8 lbs...</span></i></div>
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<i><span class="Apple-style-span" style="font-size: large;">who chose the peak of excitement to make his grand entrance.</span></i></div>
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<i><b><span class="Apple-style-span" style="color: #073763; font-size: large;">Happy "birth" day, my precious child!</span></b></i></div>
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<i>I'll love you forever,</i></div>
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<b><i>Mom</i></b></div>
the Familyhttp://www.blogger.com/profile/13365899377819815539noreply@blogger.com1tag:blogger.com,1999:blog-3681219456101505746.post-69919898545839590172013-02-11T20:08:00.000-08:002013-02-11T20:10:08.250-08:00rubber ducky, you're the oneLeo has been sitting up so well in the past month that we realized it was time for a new step in bathing. He graduated from the baby tub (which supported him leaning back), to the ducky bath! So, does he like it?<br />
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<em>I'll let the pictures speak for themselves...</em><br />
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<strong><em><span style="color: blue; font-family: Georgia, "Times New Roman", serif;">Rubber Ducky, you're the one...</span></em></strong></div>
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<em><strong><span style="color: blue; font-family: Georgia, "Times New Roman", serif;">... you make bathtime lots of fun,</span></strong></em></div>
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<span style="color: blue; font-family: Georgia, "Times New Roman", serif;"><strong><em>Rubber Ducky, I'm awfully fond of you...</em></strong></span></div>
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<span style="color: blue; font-family: Georgia, "Times New Roman", serif;"><strong><em>... and I adore my brother too!</em></strong></span></div>
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<em><strong>with love,</strong></em></div>
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<em><strong>Leo</strong></em></div>
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the Familyhttp://www.blogger.com/profile/13365899377819815539noreply@blogger.com1tag:blogger.com,1999:blog-3681219456101505746.post-54455606884713841252013-02-05T20:15:00.003-08:002013-02-05T20:23:27.726-08:00yes, 11 months already!Our little lion is 11 months old today! Can you believe it? And check out his latest trick...<br />
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<strong><em><span style="color: blue;"> I can hold on to stand!</span></em></strong></div>
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He's not taking steps yet, and not even pulling to stand, but he sure does like to stand on his own for short periods of time with Mom's help! It's a start...</div>
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Today we also celebrated another birthday. Leo's big brother, Seth, turned 4 years old today. When I posted pictures that included Seth's baby photo there were lots of comments about how much that baby picture looked like Leo. So I thought I would do a little side-by-side comparison. The interesting thing is Seth was 6 months in this picture and about the same size as Leo who is 11 months. In fact, I still have these little overalls (size 12 mo) and I'm planning to have Leo's photo taken in them for his 1 year pictures! Isn't that crazy?</div>
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<strong><em><span style="color: blue;">Seth on the left (at 6 months) turned 4 yrs today... and Leo on the right turned 11 mo today! </span></em></strong></div>
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I know it's been a whole month since our last Leo Update, and the biggest blessing is that I have very little to share. I have to say (although I hesitate to let it slide off my fingertips as I type it...), this past month has been the quietest one so far, medically speaking, since Leo was born. Hoooo Rahhh!! Finally. A little break. After recovering from surgery in December, Leo had another respiratory virus in mid-January at the same time Seth had strep. His visit to the pulmonologist was basically uneventful. He had another synagis injection to protect against RSV. We followed up with the pediatrician to have blood counts rechecked (after some abnormal labs following surgery), and those were perfect. I can happily say those four sentences sum up our month!<br />
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As for milestones, he's been sitting up longer every day and has completely mastered the skill. Leo still likes to get on all fours and rock, but hasn't shown much interest in crawling yet... he still loves to roll. I guess he's just a rock-n-roller!! Actually, I think he's smart enough to realize rolling gets him around faster. He loves to stand but isn't interested in taking steps yet. There's a lack of confidence in balance right now, that's for sure. But if there's one thing this boy loves to do, and I mean <strong><em><span style="color: red;">LOVES</span></em></strong> to do... that's talk! He jabbers constantly now. <em>And I swear, he talks back!</em> If he isn't happy about something (especially working in therapy) he will not hesitate to complain about it. The funniest little thing!<br />
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All in all, we are <em>incredibly</em> proud of how our little lion has grown....<br />
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<em><span style="color: blue;">Oh how we adore this precious boy!</span></em></h2>
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<strong><em>With love,</em></strong></div>
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<strong><em>Joyce</em></strong></div>
the Familyhttp://www.blogger.com/profile/13365899377819815539noreply@blogger.com1tag:blogger.com,1999:blog-3681219456101505746.post-51029840239422308442013-01-08T21:07:00.001-08:002013-01-08T21:10:12.133-08:00A New Year and 10 mo. (belated 9 mo.) check-upWith 2012 behind us, and all of the overwhelming challenges it brought... one of which was Leo's surgery, we are very excited to see what new things 2013 will bring. I know it hasn't been very long since Leo's last update. But there are actually some new things going on and on the horizon that we had to take advantage of this chance to share! The first being, Leo's belated 9 month well check-up. <br />
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Leo is actually 10 months old now. His 9 month check-up was delayed by our pediatrician because she wanted to see how he was doing after surgery. His stats: weight 19.75 lb (25th %), height 27.5 in (10th %), and his round noggin measured in the 30th %! His weight is right on track with where it has been, even though he hasn't gained in about 6 weeks. The good news is that he's re-gained the weight he lost during surgery. Our chunky monkey has finally added some ounces on to his long term standard 24 oz per day... the past week he's been eating 28-30 oz per day. He's been at 24 forever, it seems! The only concern is his height. He was in the 25th % for several months from birth, then the 50th % for a couple well checks, and at the 6 month visit he dropped to the 25th % and now the 10th %. His thyroid is being rechecked to see if there are any issues causing the slow down. <br />
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In a way, our little man seems so big to us. Yet his sister and brother were both in the 90th %... so he actually is quite small for our family standard. His pediatrician went so far as to call him "petite" today. Who would've thought? No matter what his size is, he is perfect to me. <br />
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The only other area of concern was an elevated platelet count. This could be caused by the fact that he's just getting over the viral infection and pneumonia. Leo will go back in a couple weeks to get the platelet count rechecked. We would appreciate prayers for this area!<br />
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As far as development goes, and I quote, "he looks great!" Apparently some of his recent tricks show he is leading up to crawling <em><strong>very </strong></em>soon. He is much stronger and more balanced than what he wants to lead mom and dad to believe. <em>Hmmmm... I wonder who likes to be held??</em> He actually sat up much longer for his doctor than he ever has for mom. <em>Apparently, we have ourselves a show-off... </em><br />
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After 10 months of sleeping "elevated", aka ... sleeping in the bouncer chair, we have the go-ahead to move him straight to laying on the mattress. <strong>Hooray!!</strong> Now our big boy can enjoy sleeping in whatever position he likes. He has wanted this for several weeks, so he happily put himself to sleep on his own tonight, sleeping on his side on his big boy crib mattress.<br />
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Now for our biggest news of all... Leo has been working on his first two teeth coming in for the past 10 days. Yes, not one <strong><em>but two</em></strong>! Finally, today... (and honestly, with the way he screamed on the way to take Meris to school this morning - I think that is when it happened...) his first tooth <em>finally</em> broke through! I can't capture a picture yet, as it isn't in far enough... and little fat tongue keeps getting in the way... but believe me, there will be plenty of cute toothy pictures to come very, very soon!<br />
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We hope you all have had just as great of a start to 2013 as Leo has. It's going to be a great year!<br />
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<strong><em>Love,</em></strong><br />
<strong><em>Joyce</em></strong>the Familyhttp://www.blogger.com/profile/13365899377819815539noreply@blogger.com0tag:blogger.com,1999:blog-3681219456101505746.post-87267443021870841982013-01-02T20:23:00.001-08:002013-01-02T20:33:17.647-08:00where did December go?In the blink of an eye, just like that, December is gone. In all honesty, December was a bit of a blur! For the past 5 months, we anticipated Leo going through surgery and for the past month, preparing for it consumed a lot of our time. Now that Leo is 12 days post-surgery, things are finally back to feeling normal. Which brings me time to do a little December recap on 9 month old Leo.<br />
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First a little developmental recap -- Leo has really proven himself this past month. He has gone from a struggling to a confident "sitter", even if for a few moments before he tumbles over. He pushes himself up to "all fours" (hands and knees) and rocks, so he is really gearing up to take steps toward crawling. He still loves to bear weight on his legs and will hold on to toys in a standing position (with assistance) for a minute or two before tiring to fall. His upper body strength has always been weaker but for some reason, he has really gotten stronger this past month. Maybe it's that he's worked so hard in physical therapy, or maybe it's timing where he is just starting to catch up. Either way, we're so very proud of how he pushes himself and how far he has come! Verbally, he's been blowing raspberries this past month and is adding "mamama" a little more often. <br />
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For the rest of my recap, I began to type this three days ago and at this point I think I've rewritten it about 5 times. In part, because I've had many interruptions. But also in part, what I wanted you to read was not initially coming out onto the keyboard. In the past several months, giving a recap of what Leo's been up to has almost been a rundown of the many appointments, new diagnoses, or other obstacles he has been working through. But in truth, December came to mean a lot more than that to me.<br />
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The quick and dirty medical recap would say Leo had about 15 appointments in December, spent time being sick and on four consecutive rounds of antibiotics, had surgery on December 20th for the obstructive apnea, post-surgery caught a virus that led to pneumonia, became dehydrated, was readmitted to the hospital so that we spent both Christmas Eve and Christmas day hospitalized, continued to struggle with recovery for several days after coming home, but now is doing great. I could have shared with you all the original details that I typed which extended the explanation of everything into about seven more paragraphs! But again, there are so many more meaningful things I am taking away from December in my heart that I would rather share.<br />
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Until this past month, I had no clue what other families in our DS community (or any family, for that matter) went through to prepare for, go through, and recover from surgery with a child. I was one of the ones who sent my prayers beforehand, asked how the child was afterward, and went on about my business. I now have a new level of appreciation for, and compassion for, all that parents do for their children under these circumstances. <br />
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I've come to realize that complications like sensitivity to morphine, dsats (drops in oxygen saturation levels) due to inflammation or respiratory illness, resistance to eating when the throat is sore, and dehydration are common to infants or children with DS. Likewise, Leo has shown that a fighting spirit and a sense of normalcy are just as common. For example, even while on oxygen, heart monitoring, with an IV in his arm, and running a fever, he still insisted on having tummy time in his hospital bed. Even when he felt his worst I was amazed by his spirit. How he wanted to turn over, move around, and even play for short periods of time!<br />
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I have to be honest - when Leo was admitted to the hospital on Christmas Eve my heart sank. My first thoughts were about our 3 year old at home, how it wasn't fair that I wasn't there to make cookies for Santa and have Santa's gifts ready for when he woke up Christmas morning. The stockings weren't yet hung by the chimney with care, and a lot of things were left completely undone. As hard as I tried, I did not have every little detail of Christmas completely done prior to Leo's surgery. I thought I would have time afterward, but I was wrong. I also thought about our 14 year old daughter and how I wanted to be at home when she opened Christmas gifts, yet it would be so unfair to have her wait. All my little traditions that I had carefully built over the years and the perfect Christmas morning we would always have had been torn away right before my eyes.<br />
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I quickly learned of so many other friends who have been through the same thing - DS or no DS, families who had at one time or another spent Christmas with a child in the hospital. That's when I told myself if they could survive it, so could we! I also learned.... Santa could wait and come later after mom and Leo came home, he was fine with that. He had done it before for other families and would do it for us. Allowing a 3 year old to open gifts just from grandparents on Christmas morning was enough to bring the biggest joy to him. He didn't need to open all those other gifts afterall! Knowing that there were gifts still left under the tree to by opened by our 14 year old was actually exciting to her and she enjoyed having Christmas spread out over a few days instead of finished by 9:00 am on Christmas morning. Volunteers at the Children's Hospital who delivered gifts to all three of our children on Christmas day in Leo's hospital room inspired our family to want to be a part of that joy for other families next Christmas. Ordering room service from the hospital cafeteria could be fun because it became our "Christmas Feast", per Seth, and a wonderful meal to enjoy together as a family. <br />
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But the <em>Number One</em> thing I learned... is that when you have a sick child, all time stands still and nothing else matters... not even Christmas. Having our family together in one room was holiday enough, traditions went out the window, and even in the eyes of a toddler and a teenager there is complete understanding that the focus needed to be on Leo. This Christmas reminded me of what truly matters, and that was definitely not the wrapping paper, the gifts, the filled stockings, the traditions, nor the perfect Christmas Eve meal. It was simply being together.<br />
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As I reflect on all that I've shared with those who read my blog over the past year, I hope you take away one thing. Not that Down Syndrome is a burden, not that having a child with special needs is a chore, but that no matter who your child is and what their needs are, you just rise to the occasion as a parent. Not as a supermom, not because you were the chosen one for this special child, but just because that is all any good parent would do out of love for their child. From there, everything else just manages to fall into place.<br />
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I can't wait to see what Leo has in store for us in 2013. I know there will be some trials (because with any kids, there just are...), but I also know there will be immeasureable joy!<br />
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Happy New Year to each and every one of you.<br />
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<strong><em>with love,</em></strong><br />
<strong><em>Joyce</em></strong>the Familyhttp://www.blogger.com/profile/13365899377819815539noreply@blogger.com0tag:blogger.com,1999:blog-3681219456101505746.post-7412377618401284332012-11-28T20:28:00.000-08:002012-11-28T20:28:40.289-08:00A little medical update on our lil' turkey - 8 months!It's that time again, the end of another month. I know, <em>I know</em>... I'm a broken record by saying this. But I just can't believe another month has gone by! Soon, Leo will no longer be 8 months old. His first year is going by <em><strong>way</strong></em> too quickly!!<br />
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Here are some updates on our little turkey....<br />
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November actually started out pretty slow and quiet, with fewer dr's appointments than normal. After more than two months of either steroids for croup or wheezing, Leo was FINALLY well enough to have his 6 month immunizations. I was really excited about that until he ran a fever over 103! This was his highest fever yet, and a little scary. He was miserable for about two days and then fine afterward. He also had the second of five months of synagis injections. Luckily, this month he had no reactions at all. Not even a smidge of fever.<br />
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Despite these brief "well" periods, Leo continued to have fluid in his ears, ear infections, and sinus infections. He's been on antibiotics for all of November with the exception of 6 days - currently on his third round. <em>The good news</em> is that he's required fewer breathing treatments this month than September or October, despite all his chest congestion. We think the Advair has helped tremendously. <em>The bad news?</em> Advair in Leo's dose is now on 'back order' by the manufacturer and out of stock in all pharmacies in our area. Possibly another example of a pharma company choosing to stop making a medication dose that isn't in high demand, since it isn't as profitable?? So we recently had to switch to Symbicort. Praying that it will work just as great!<br />
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This month also brought along his follow-up with the ENT doctor. I had been dreading this visit for a while, since I knew it would bring us to facing the decision of surgery again. But now that the time is here, I'm just ready to get it all over with. Dr. Mitchell, Leo's ENT, and Dr. Rosen, Leo's pulmonologist, both agree that a current sleep study will ultimately decide where things stand with his obstructive sleep apnea and will decide for us whether or not we'll need to go ahead with surgery. As of right now, surgery is actually scheduled for December 20th. It would include removing tonsils and adenoids (to resolve the obstructive apnea), a bronchoscopy to look at his airway structure, tubes in his ears to resolve the fluid and infections, and ABR (auditory brainstem response) which is a hearing test performed under anesthesia to check for any level of hearing disability. The ABR is standard for babies and young children with Down Syndrome any time they are scheduled to go under anesthesia. Some level of hearing loss affects about 60% of children with DS, so it's important to identify and treat as early as possible.<br />
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So, the sleep study took place last Saturday night. Let me tell you... this one was even less fun than the first! Leo woke up and wrestled with the wiring and nasal canula about every 15 to 20 minutes from 8:30 pm until 3:00 am, at which point he slept for a whopping 75 minutes straight (with a <em>very</em> sarcastic woooo hooo....). At 4:15 am, there was no getting him back to sleep. Please pray that the technician didn't exagerate by saying he had enough data on his sleep. I can't imagine either of us having to go through the all night battle of another sleep study any time soon! Not to mention paying another $500+ out of pocket expenses to go through it again... ugh!! I promise you one thing, this boy could pull a Houdini on any given day. He was ripping gauze, moving wires, and removing tape like nobody's business. If only we could market that!<br />
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Last but not least, there was a visit to the GI doctor yesterday. It was by far the best visit of all this month! After a huge weight gain noted at the previous visit, which was pretty concerning, Leo is now holding steady at the 50th% on the growth chart weighing in just over 19 lb. He's doing better symptom-wise with his reflux. The amount of food he's regulated all on his very own, right at 24 ounces a day, is perfect for his growth. Sidenote - I'm always amazed and surprised he can survive on such a small amount of food for his size, but apparently DS causes a much different (and usually slower) metabolism which requires less food. The fact that he is regulating this all on his very own, and that we're not pushing him to eat what our previous babies would normally eat at his size, got us kuddos and props from his GI doc. He's doing so well that he gets to wait another three months before going back for another GI visit!<br />
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On the therapy side of things, he's been working really hard with PT, OT, and speech (feeding) therapy. He's doing really well working on upper body strength and has come a looong way toward sitting up. Especially in the tripod position (holding his upper body up with his hands on the floor, while in the sitting position) for up to a minute, and he's starting to sit up for a few seconds at a time without holding on to anything at all! Even though he's behind when Meris and Seth met this milestone, our pediatrician says he is still within the range of a typical baby at this point. He's also working on some new sounds beside ba and da.... he's actually working on Ma! My heart swells at the thought of him saying <em><strong>mama</strong></em>. (I've only been saying it to him since about one month old, you know!) So three cheers for our Leo, what a hard worker you are! <br />
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To close things out, please keep us in your prayers this next week as Monday, December 3rd, we return to the Pulmonologist and get the results of the sleep study. Again, this will be the deciding factor for surgery on the 20th. We are at peace with whatever the outcome is, as we only want whatever Leo needs. Obstructive apnea can cause pulmonary hypertension and new cardiac complications for him, so we want to fix this if needed. Please pray that the sleep study actually has enough data so that a decision can be made and not postponed. Surely God will have some mercy on us, or at least pity, after what we went through last Saturday night!<br />
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<strong><em>Blessings from Leo to each of you...</em></strong><br />
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<strong><em>Love, Joyce</em></strong>the Familyhttp://www.blogger.com/profile/13365899377819815539noreply@blogger.com3tag:blogger.com,1999:blog-3681219456101505746.post-26779876385369638592012-11-26T22:31:00.002-08:002012-11-26T22:31:26.041-08:00Giving thanks, in November.All month long, I've been reading about what all of my "facebook friends" are thankful for. Each day there is something different. Friends, family, children, coffee, seat warmers in the car, a free Saturday with nothing on the calendar... the list is endless. Even though I wasn't one of those posting my "daily thanks" this year, believe me, I have <strong><em>so</em></strong> many things to be thankful for. <strong><em>I truly do! </em></strong><br />
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One of the things that I'm most thankful for this year has been Leo's good health. You wouldn't guess it by reading about all of the doctor and therapy appointments he has been to so far, or by the look of my calendar in the month of December - as we are bound to set a record for him! But compared to a friend in our local DS community with a baby who went in for open heart surgery a month ago who has been in ICU ever since, compared to our friends who have seen their sweet daughter go through the unimaginable in her fight against leukemia for the past 18 months, and another friend whose sweet boy has been battling brain cancer for years with an incredible amount of therapy, as well as the endless stories of other children fighting health battles that I seem to come across everywhere, every day...... in comparison, <strong><em>I. Am. Thankful.</em></strong><br />
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Even more than this, I am thankful to have a heavenly Father, almighty God, loving Lord... who listens to our prayers as we petition Him for all of these children. One who provides comfort and peace for those in need. Who tugs at our hearts to reach out to others who need His love as they walk through their darkest days, especially those moments when caring for and worrying over a sick child. A loving God who sent his one and only Son to be born in a stinky stable and die a cruel death on a cross to save us all - giving us the Hope of an Eternity with Him, along with those that we love. For this reason, above all things, the one thing I am most thankful for this month is .... Leo's baptism. <br />
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On November 11, 2012...<br />
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We made a vow to raise Leo in a Christian home.</div>
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Leo John Christopher Ghormley was committed to our heavenly Father!</div>
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<em>and we Celebrate!</em></div>
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<strong>2 Timothy 3:14-15</strong> <em>But as for you, continue in what you have learned and have firmly believed, knowing from whom you learned it and how from childhood you have been acquainted with the sacred writings, which are able to make you wise for salvation through faith in Christ Jesus.</em><br />
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<strong><em>With love,</em></strong></div>
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<strong><em>Joyce</em></strong></div>
the Familyhttp://www.blogger.com/profile/13365899377819815539noreply@blogger.com0tag:blogger.com,1999:blog-3681219456101505746.post-66249184869181528142012-10-30T21:42:00.001-07:002012-10-30T21:42:05.960-07:00The end of October & end of 7 monthsIt's the end of October, the end of Down Syndrome awareness month, and nearing the end of Leo being 7 months old. I guess that means it's time for a Leo update!<br />
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Overall, Leo has done pretty well with his therapists. He hasn't mastered balance yet and falls to the side easily when trying to sit up, but he is progressing - he actually puts his hands (or at least one) down in front of himself now to hold himself in the "sitting up" position for short periods of time. This is new progress, and we're excited! We know he will continue to make progress because he has great therapists. We can also see the wheels turning when we say certain words to him. He looks like he's mouthing the word (like "bye" or "hi"), and then attempts to make the sounds. He's done really well with bah and sometimes dah though!<br />
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At the beginning of October, Leo had a follow-up visit with the GI doctor (gastrointestinal, in case you need to know!). He had gained <strong><em>almost 3 pounds</em></strong> in just 5 weeks. I know... <em>that's insane</em>! We had gone back to thickening formula again at the end of August in order to treat his reflux more aggressively and hopefully get the inflammation of his tonsils and adenoids under control, to help the obstructive apnea. But this chunky of all chunkiness was actually going to work against us. All this weight gain was now making his reflux <strong><em>worse</em></strong>. So, back to NO thickening we went. According to Dr. Whitney, Leo is going to be a "moving target". <em>Sigh...</em><br />
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The second week of October brought congestion back again and Leo's 6 month "well check-up", albeit delayed. At the well check, Leo was also wheezing again. That meant another delay of his 6 month immunizations.We weren't sure why the advair he began taking several weeks before was not kicking this wheezing in the tail? But back to adding breathing treatments again we went. This respiratory infection was so nasty, it soon brought on a fever, blockage of his nasal passages, and labored breathing - especially when he slept. We made our first trip to the Emergency Room just to check things out. In typical Leo fashion, he was happy and calm for the ER staff. Yet again, I heard "wow, you can't tell how sick this little guy is just by looking at him. But now that I'm listening to him, he's pretty sick!" Thank goodness he was well enough to be discharged home, and mom's worries were put at ease a little more. <br />
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We had some awesome news in October as well. Not only was Leo approved for synagis injections (antibodies - very expensive ones at that - which help minimize the symptoms of RSV) for five months to cover him during RSV season, but our insurance is covering the cost of the medication 100%! To put into perspective how exciting this news is... the injections total approximately $10,000 for the five months!!! We are thankful to God for the smallest of blessings, and even more thankful for this huge blessing! Leo made his first visit to the synagis clinic at the pulmonologist's office in mid-October. The injection is definitely no fun - given in two doses (one for each thigh), and the medication is thick so it really hurts. He also ran a fever for almost three days after. But we are really hopeful this will help our little guy out, considering respiratory infections are so hard on him. <br />
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Last week, Leo had to return to the pediatrician for ear infections, and additional delay in the six month immunizations. At that point, he had been congested for over two weeks so we weren't surprised it had settled in his ears. He also visited the pulmonologist again to decide whether to make adjustments on his medications. No changes were made, but he did test for RSV and Leo was negative. This has just been a nasty virus of some sort that really is just starting to go away after more than three weeks.<br />
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Saving the best update for last... after more than <em>FIVE months</em>, we were finally given the green light to get rid of the pesky heart/apnea monitor! Hip hip triple hooray!!! I can't lie, we were really nervous at first to not use it, but Leo has done wonderfully without it.<br />
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So that brings us to the end of October. This past month has been Down Syndrome Awareness month, and in less than five days we will go on our first "buddy walk". With the help of our friends and family, $730 has been raised so far by our team "Leo's Lions". We are so completely overwhelmed and grateful! Money raised will go to the Down Syndrome Guild of Dallas. This organization has already been a pillar for our journey. We want them to be around for years to come, as Leo will rely on them to be there for him. We have been looking forward to this walk for months, and cannot wait to enjoy the experience as a family, with our friends, and with other families going through the same journey as us. <br />
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<strong><em><span style="font-size: large;">Thank you, from our little Lion!</span></em></strong></div>
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May you all have a fun-filled Halloween! Until next time...<br />
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<strong><em><span style="font-size: large;">love, Joyce</span></em></strong>the Familyhttp://www.blogger.com/profile/13365899377819815539noreply@blogger.com0tag:blogger.com,1999:blog-3681219456101505746.post-28122167449446399292012-10-08T20:59:00.002-07:002012-10-08T21:04:19.520-07:00What I've learned from Leo, so far...Do you think it's ironic that in October 2011, I found out my son Leo would be born with Down Syndrome? Or am I just that lucky? October is "Down Syndrome Awareness Month". I'm happy to say that one year later, in October 2012, I'm more aware of what Down Syndrome <em>is</em>... and what it is <em>not</em>.<br />
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Here are a few things I would love to go back and tell myself one year ago. And if you're a parent who has been given the news that your child has an extra chromosome, here are a few things I want <strong><em>you</em></strong> to know. <br />
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<em><span style="color: blue; font-family: Georgia, "Times New Roman", serif;"><strong>1. The families you read about who say how happy they are having a child with Down Syndrome in their family, how much they love their child with disabilities, and how wonderful life is... are honestly telling the truth. </strong></span></em><br />
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A year ago, I scoured the internet looking for "real life answers" on how life would be having a child with Down Syndrome. I came across letters through the Down Syndrome Guild with stories about how <strong><em>normal</em> </strong>things were for other families, and how wonderful it was to have these children. I thought they must be fooling themselves. I searched through blogs and other sources on the internet... and still, only <em>more</em> bright and normal stories! I thought they were just looking for the bright side, or painting a pretty picture for everyone else. Where were the stories about how hard it was, and how sad they were? Afterall, I was pretty sad and Leo hadn't even arrived yet!<br />
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So one year later... Okay, I admit it. I was wrong, and they were right. There, I said it! Our life is completely normal. We have a 7 month old baby boy who brings joy to our lives simply because he is our son and a little brother to his siblings. He cuddles with us, smiles and laughs, he jabbers syllables, he makes stinky diapers and rolls all over the floor. Leo even throws some pretty mean fits, maybe I should be sure to share that sense of normal! Simply put, he is a sweet, sometimes tempermental, and chunky 7 month old. Who just happens to have an extra chromosome. <br />
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<strong><em><span style="color: blue; font-family: Georgia, "Times New Roman", serif;">2. It doesn't take someone "strong", "special", or hand selected by God to raise a child with Down Syndrome. </span></em></strong><br />
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I still hear how "strong" I am, what a "special" family God has picked for Leo. I would like to think we are all of those things. But honestly, all Leo needed was a family to love him. The same as every other child. God heard our prayers for another baby, and science or nature formed him the way he was meant to be. Now since I'm <em>NOT</em> a perfect person, God gives His grace to cover my mistakes as a mom. I just want you to know that if you're expecting a child with special needs, you don't have to be strong all of the time or special in any way. The only requirement is that you love your child... and believe me, you will!<br />
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<span style="color: blue; font-family: Georgia, "Times New Roman", serif;"><strong><em>3. You will be glad you had prenatal testing to inform you that your baby has Down Syndrome. You will be thankful to have the time to adjust to how he is made, so when he is born you can completely focus on him and merely enjoy his arrival.</em></strong></span><br />
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I am <em>so</em> thankful we knew before Leo was born. The majority of families I have met through our DS connections didn't know prenatally. So many women say "I didn't want testing, because it didn't matter. We would have had the baby no matter what." Knowing in advance was the biggest blessing, as it simply gave me time to get my crying and sadness out of the way. It's as simple as that! <br />
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The testing wasn't to give us the avenue to decide about whether or not to continue with the pregnancy, it was simply to let us know if there was something wrong with our baby. But it did make me realize the "choices" that parents face with today's medical technology, and for that I am torn and sad. For every Leo, there are 9 others like him that are terminated by their parents. That is a whole other night of writing... seriously. <br />
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Bottom line, I would never have changed how things worked out for us. The numbers reported about the risk for amnioscentesis is VERY HIGHLY exagerrated, especially when you look at the treatment from high risk perinatalogists in major cities. The perinatalogist who performed mine had a complication in only 1 out of 600. That is miniscule compared to what we gained out of knowing. I will also say that for every mom I've met who didn't have testing done prior to pregnancy, they now say they wished that they had known. <br />
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<span style="background-color: white; color: blue; font-family: Georgia, "Times New Roman", serif;"><strong><em>4. Even if your child requires a lot of doctors appointments or medical intervention, you will make it through. In the midst of all of those appointments, you will even find others who are going through more than you. So be thankful!</em></strong></span><br />
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As you know, Leo has had a few minor issues. Yet things could always be worse. For someone else, they <em>are</em> worse! Some weeks he has no doctors appointments, and some weeks there are several, along with therapy appointments. There are moments when life feels normal and routine, and times when I feel "doctored out". In the midst of those times, I've always seen or read about someone whose child is going through more. I would love to see no child going through a ton of medical treatment... but then again, we are blessed to have modern medicine to treat our children and give a better quality to their lives.<br />
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<strong><em><span style="color: blue; font-family: Georgia, "Times New Roman", serif;">5. The world has given you expectations of how your child should be born, but this child is going to change how you feel about that.</span></em></strong><br />
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I don't know what I really expected Leo to be like. I tried to imagine it, and could never clearly form him in my mind before he was born. I do know that when he was born, I instantly saw some of Meris (his older sister) and some of Seth (his older brother). The way he would sleep with his arms above his head like Meris, or the way he widens his big eyes like Seth. When he was first born I thought, "Hmmm... this kid is just like my others. Are we sure he has Down Syndrome?" In fact, I can't tell you how many friends of ours would say the same thing. It was suggested that we should have him "re-tested". Well, I don't know... are we sure his DNA was correct the first time? Could his DNA have changed? Hmmm...<br />
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Looking back, I love the fact that we questioned whether or not our child has an extra chromosome. I love the fact that our close friends questioned it as well. Do you want to know why? It proves my point of how I feel today. And <em>THAT</em> is... there's no difference between my children. They are all perfectly and wonderfully made just the way they should be. I really do look at Leo and see him the same way as my other children. I really do! In fact, I remember filling out paperwork for Leo when he was a couple of months old and coming to the question "What is your child's disability?" and stopping to ask the person in the office... "Do I put Down Syndrome there? Is DS a disability?"<br />
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I also used to think that I saw all children with disabilities equally as other children, but I was wrong. A child with a disability now captures my attention, unlike before, and I love to see them tick in their own special way. Having Leo has made me realize children with a disability compares to blue vs brown eyes, how tall they will be, if they are naturally athletic or a musician, or whether or not they have freckles. Oh I know... there's a bigger picture to have a disability. But really and truly, I don't see that right now. <br />
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His extra chromosome doesn't define him, it merely adds to the list of his features... you know, like "blue eyes, light brown hair, chubby cheeks, strong legs, and three chromosome 21." <em>Yes... that's my Leo.</em><br />
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<strong><em>Love,</em></strong><br />
<strong><em>Joyce</em></strong>the Familyhttp://www.blogger.com/profile/13365899377819815539noreply@blogger.com0tag:blogger.com,1999:blog-3681219456101505746.post-70459053059283178142012-10-07T20:47:00.003-07:002012-10-07T20:47:59.373-07:00One year ago. The day that changed my life as a Parent.One year ago today, the <em>normal</em> life I knew came to a screeching halt. On October 7, 2011, I was given news that turned me into a scared, unsure, shocked, and grief-stricken mom-to-be. Chris and I easily classify the two weeks that led up to October 7th, and even the weeks that followed, as the hardest period of time we went through as a married couple. Life doesn't prepare you for what you even <em>think</em> will be hard, and nothing prepared us for this.<br />
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Today, I'm amazed at how things have changed in one year. There are so many thoughts I want to share with those parents who just found out their baby will be born with Down Syndrome. To understand where I <em>came from,</em> here is the letter I wrote to our closest friends and family once we had a little time to process the news about Leo. By reading this, you will instantly see how much my perpective and how much <em>"I"</em> have changed in one year. We all know how Leo's story ends... but by reading this, you will appreciate even more what I will be sharing with you when I blog tomorrow.<br />
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<em><strong><span style="font-size: large;">November 9, 2011</span></strong></em><br />
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Some of you know the very beginning of Leo’s story, but with many of you we have not yet had a chance to share. The past six weeks have been very tough for our family, especially for Chris and I as parents. Considering the unknown difficulties that may lay ahead for our family, I thought now would be a good time to share Leo’s story with each of you.<br />
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On September 22, I received the news every pregnant woman fears – there was an abnormal result from my 12 week nuchal translucency screening. On the one hand it was scary, on the other hand hopeful that it was an error… a false positive… anything but a chromosome disorder for our baby. The results showed our baby to have a 1 in 23 risk of Trisomy 21 (Down Syndrome) and a 1 in 5 risk of Trisomy 13 or 18, both of which are fatal. No one wants to be that “1”. I thought Trisomy 21 would actually be the better news, even though it was a lower risk. At least with that our baby could live. I heard story after story from other moms who had been through this abnormality, with results being false or incorrect, who ended up having a healthy baby or knowing someone who did.<br />
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On September 27, Chris and I met with the genetic counselor at my high risk doctor’s office. She agreed with my OB that the risk of Down Syndrome was unlikely, but she feared the high risk of Trisomy 13 or 18. We also found out that with Trisomy 13 or 18, certain or even most organs don’t develop correctly and a level 2 sonogram could possibly confirm those chromosome problems even before getting the results of the amnio. The counselor felt the high risk we were faced with warranted an amnioscentesis in order to rule those out and ease our minds, or confirm the chromosome disorder and prepare us for the worst. We agreed and scheduled the amnio.<br />
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On October 5, I had a level 2 sonogram and amnio. The sonogram showed the baby’s organs to be developed normally (from what they could see in this tiny one). We had hope! Just to be sure, we followed through with the amnio being performed. By the end of the appointment, at only 15 weeks into the pregnancy, we found out we were expecting a little boy. Our second Boy! A brother for Seth – yay! ANOTHER brother for Meris, awww… Two days later, we would get results from the rapid test called “FISH”. It provided results on the four most common chromosome disorders – Trisomy 21, Trisomy 18, Trisomy 13, and Gender.<br />
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On October 7, I received the call from the genetic counselor with news that changed our lives forever. The FISH test confirmed Trisomy 21 (Down Syndrome). My heart sank. My mind went blank. I wasn’t expecting this because it was the “lower” risk. This should have been the “better” news, but to me it felt like the “worst”. I should have been happy that our baby had a better chance of being born, a better chance of living. But instead, my heart was broken into a million pieces at the thought of having a baby who would not know a ‘normal’ life. I shared this with a few friends… again, everyone had a story of someone they knew who received a result from “a test”, with the same news, who gave birth to a perfectly normal baby.<br />
Now you all know what I do for a living. I work in the medical field with clinical research, I spin down blood and send it off for testing all the time. I’ve seen patients, or at least read their clinic notes, with a new diagnosis who want to believe there was some mistake in the lab. I spend time wondering why they feel that way, why they don’t just accept the test result and move forward? Well for a while, I became that patient. Wanting to hang on to some false hope that this was all wrong, and the final test would confirm that mistake. Even though my heart wanted to hang on to any possible hope, my brain knew that it would be extremely rare for this result to be wrong. But somehow, I convinced myself that I wouldn’t accept it fully until the results of the SECOND chromosome test, performed in a separate lab, came back. Surely two results from two different labs could either confirm the result or point out the human error that I so desperately hoped for.<br />
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The next few weeks were a roller coaster of emotions. On October 19th, the results of the full chromosome testing was completed and confirmed the Trisomy 21, yet again, was a fact. Both tests had the same result. This was really, really, real.<br />
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The next step would take place on November 2, at week 19, with another Level 2 ultrasound to look at the health of this baby boy… this little but growing bigger every day guy, our little Leo. We never knew, until now, that there are a multitude of physical challenges for babies/children with Trisomy 21. There is a wide range of heart defects (70% risk?), digestive organ defects, hearing and sight deficits, just to name a few. And the most common issues, which we will wait even longer to determine, are the mental status and learning disabilities of this little boy. At that sono on November 2, we received the best possible news parents in our situation could hope for. Aside from the genetic testing confirming Trisomy 21, and aside from not knowing our baby’s mental status that will develop after he is born, this sonogram showed we had an otherwise completely healthy, 15 ounce (measuring large for his gestational age), with “big feet”, sweet baby boy.<br />
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Although our baby boy’s health is as good as we can hope for at the moment, there is still the possibility of some minor birth defects. He is also at higher risk of not making it full term, although I am being followed very closely by my OB and Perinatologist in case intervention is needed. So we ask for your prayers for his continued progress, good health, and God’s protection. We are making a leap of faith that God will protect him, provide for him, and most of all give us the courage to raise this little boy to be whatever he was meant to be in our lives and in the lives of others who share his path.<br />
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So why am I sharing all of this? There will be times ahead when we need the help and emotional support of our family and closest friends. But most of all, as I've already mentioned, we need your prayers. For us, and for Leo. We have faith there is a reason God has chosen us to take care of this special little one, and we want to continue sharing his story with you. Until the next chapter begins…<br />
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The Ghormleys<br />
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<span style="color: red; font-size: large;"><em>Thankful, today, for answered prayers.</em></span></h3>
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<strong><em>Love, </em></strong><br />
<strong><em>Joyce</em></strong><br />
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the Familyhttp://www.blogger.com/profile/13365899377819815539noreply@blogger.com0tag:blogger.com,1999:blog-3681219456101505746.post-69903156667322105512012-09-27T21:25:00.001-07:002012-09-27T21:27:26.600-07:00the month long viral extravaganzaI don't think this is the first time I've said this, but it really would be okay if it was the last... Leo has had quite a busy month!<br />
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On August 27th, a month ago, he began daycare. Let me tell you that we adore the teachers at Early Headstart. We are so blessed to live in a community that provides this opportunity for our Leo! This is no typical daycare, the usual child to teacher ratio has been 3 to 1. On some days, 4 to 1, and even on other days 1 to 1. It goes without saying that Leo is not only spoiled with love and attention by them, he is also given a lot of opportunity to work on his goals set by the therapists. <br />
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His OT, PT, and Speech Therapist have routinely seen him at "school" for the past month. He's up to one or two therapy visits per week, with the current big goal of sitting up. Even though he's come a long way with tummy time, he still has some work to go before sitting up on his own. This will be his biggest challenge so far, but I have no doubt he'll get there once he sets his mind to it. He would MUCH rather stand, that's for sure... and if Leo could find some way to skip sitting up and go straight to pulling up, I believe our determined little guy would do it!<br />
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<strong><em><span style="color: #0b5394; font-size: large;">Working it with the Physical Therapist...</span></em></strong></div>
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<strong><em><span style="color: #0b5394; font-size: large;">Working it during tummy time at home.</span></em></strong></div>
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So back to the start of daycare... three days into it, Leo developed what seemed to be a cold. It started with cough and congestion and within a week he began audibly wheezing. After antibiotics for ear infections, breathing treatments around the clock, and finally a round of steroids, more than two weeks into this cold/infection and he was wheezing even more severely. The next part of his adventure brought a chest xray to check for pneumonia, azithromycin "just in case", an additional medication for his breathing treatments, and another (even longer) round of steroids to carry him through the next two weeks... until he was seen by a pulmonologist.<br />
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That's right, today Leo made a new friend which we have added to his list of specialists... Dr. Rosen, the pulmonologist. We <em>already</em> love Dr. Rosen, even though we don't love the fact that he has diagnosed Leo with <strong>reactive airway disease</strong>. What we love more about this doctor is the discussion he brought up with the goal of getting rid of this heart/apnea monitor! Did I really just type that? Seriously, I did. <em>And with a smile!</em><br />
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Sweet, kind, wonderful Dr. R will be reviewing all of the previous pulmonologist summaries from Leo's monitoring events and setting a plan to get rid of this thing that's been attached to my poor baby while he sleeps for the past five months. If anything, the visit was worth hearing that! We're also excited that Dr. R is the director of the sleep clinic located right there in the pediatric pulmonology clinic. He'll be able to re-evaluate Leo's obstructive apnea when the time comes to make a decision for surgery (removing tonsils and adenoids), and that decision is only a couple months away.<br />
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So what about the reactive airway disease? Well, that means we may have a long fall and winter ahead of us - the absolute worst time for respiratory infections and the distress it could cause for Leo's breathing. He is starting a baby version of Advair as a preventative, and he'll be scheduled for Synagis injections for protection against RSV (which I'm so happy about, after knowing several of our little friends with DS who have been hospitalized for RSV!). Synagis isn't a vaccine, instead it's an injection of antibodies given on a monthly basis during RSV season, which will help our little one fight off the infection if he's exposed. </div>
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On the horizon for our Leo... a follow-up visit with the GI doctor next week to talk about how his reflux is doing, his 6-month well checkup (which will actually be 7 months, since he was sick...), and his first <strong>FOOTBALL GAME... the "I-30 Classic" - Rockwall High School vs. Rockwall-Heath High School tomorrow night. </strong> </div>
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<span style="color: magenta; font-size: large;">I'll give you one guess, and one only, as to which of those we are the most excited about....!</span></div>
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<span style="color: #e69138; font-size: large;"><strong>Go Rockwall, Leo's rooting for you!</strong></span></div>
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<strong><em>Love,</em></strong></div>
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<strong><em>Joyce</em></strong></div>
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<strong><em>Coming soon... a wrap-up about Leo's DOC Band journey, and a look at his round head!</em></strong></div>
the Familyhttp://www.blogger.com/profile/13365899377819815539noreply@blogger.com1