tag:blogger.com,1999:blog-48646433105372201502024-03-19T05:42:04.695-04:00Wonderfully Made...I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. (Psalm 139:14)
Being grown in faith because of my daughters diagnosis of Trisomy 18, a rare genetic syndrome. This is my reality of loving Alyssa and the impact she makes in our family. I praise God for showing us His grace and revealing our human frailty throughout this journey.Anonymoushttp://www.blogger.com/profile/05765135521155260760noreply@blogger.comBlogger72125tag:blogger.com,1999:blog-4864643310537220150.post-7262216003292880642015-07-25T00:02:00.001-04:002015-07-25T00:02:48.138-04:00You have a face for YouTube...<div dir="ltr" style="text-align: left;" trbidi="on">
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<u><span style="color: purple;">Family Fun</span></u></h3>
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In June, we launched a gofund me campaign to raise money for a wheelchair accessible van. My kids and I have enjoyed the Holderness family video's for awhile. This is the kids "shout out" to the Holderness family asking them to spread the word about our campaign.</div>
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<iframe width="320" height="266" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/UK-y_w_2d3s/0.jpg" src="https://www.youtube.com/embed/UK-y_w_2d3s?feature=player_embedded" frameborder="0" allowfullscreen></iframe></div>
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<span style="color: purple;">HELP US HOLDERNESS FAMILY</span></h2>
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Anonymoushttp://www.blogger.com/profile/05765135521155260760noreply@blogger.com0tag:blogger.com,1999:blog-4864643310537220150.post-46315094269756302662015-06-27T17:07:00.000-04:002015-06-27T17:07:07.318-04:002014/2015 update<div dir="ltr" style="text-align: left;" trbidi="on">
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July 2014: Celebrating 6!! This picture says it all..it's been a crazy ride but we are having fun!</div>
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August 2014: A day at the beach. Getting some extra minerals in the diet, from the sand...<br />
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September 2014: a HUGE milestone Alyssa started kindergarten! As a kindergartner she was eligible to join Girl Scouts. Like her older sister before her, Alyssa became an official Daisy!</div>
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October 2014: The school year has been buzzing by...</div>
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November 2014: So thankful for a better year. Alyssa's hair had been getting very long. We decided to cut 16 inches off and donate 13" to Wigs for Kids. Great clips did the cut for free! We should have done a before and after shot. Alyssa's hair had reached down to about her waist and after the cut was just below her ears! A few months after the cut she received a certificate and because she is a Girl Scout, she also received a patch for her donation.</div>
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December 2014: Alyssa's class had a field trip to the mall and she got to sit on Santa's lap. She was so excited.</div>
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January 2015: Alyssa was in the hospital for surgery and had an extended stay due to some GI issues. Danielle, one of our favorite Child Life Specialist came by for a visit with some bubbles. The child life program is great. They provide toys, and other distractions for our sick children while in the hospital. The Child Life Specialist program is a great resource for families in the hospital and at home too . </div>
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February 2015: Karen and Rick Santorum have a daughter a few months older than Alyssa, that also has Trisomy 18. They wrote a book, Bella's Gift, sharing their journey as special needs parents. They stopped in our area, so Alyssa, her sisters and I went to Barns & Nobles to get the book signed. Alyssa met and impressed the Santorums' by introducing herself with her talker (push button device with a recorded voice- provided by her sister). Alyssa was excited to see all the people. Karen and Rick Santorum were very sweet to her.</div>
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Alyssa meeting Karen and Rick Santourum<br />
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Alyssa using her talker to introduce herself</div>
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Rick Santorum signing a copy of Bella's Gift, with Alyssa's big sister.<br />
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March 2015: Everybody is Irish in March, right? Alyssa with her St. Patty's bow. It was great to see a smile on her face because she had spent the previous six weeks home with pneumonia. We opted to stay home and teleconference with her doctors because there were so many bugs at the hospital that we didn't want to expose her to anything else.<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWEcsvsK3aWD-bnOj5g9VoL4GWvwFAi-Wrx0t6GNSbE-FJ8VRi61qoU7-V5lUyXItxN-4RrBKKQ7tHdqjmcfW51eMteXq_qtDySaXekQcyQfTgynlQiwqbQ3ulAIW-aoxdvPwpdysjasQ/s1600/IMG_2058+%25281%2529.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWEcsvsK3aWD-bnOj5g9VoL4GWvwFAi-Wrx0t6GNSbE-FJ8VRi61qoU7-V5lUyXItxN-4RrBKKQ7tHdqjmcfW51eMteXq_qtDySaXekQcyQfTgynlQiwqbQ3ulAIW-aoxdvPwpdysjasQ/s320/IMG_2058+%25281%2529.JPG" width="320" /></a></div>
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April 2015: Alyssa and her siblings did our annul Easter egg hunt.</div>
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May 2015: Alyssa participated in the Special Olympics for the first time. She raced against another student in the gait trainer and took home a 1st place ribbon!!</div>
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Alyssa is looking forward to turning 7. This year has been the year of fulfilling possibilities. Alyssa began using a gait trainer to learn how to walk. She is successfully taking steps, who knows what this next year may bring!!</div>
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Anonymoushttp://www.blogger.com/profile/05765135521155260760noreply@blogger.com0tag:blogger.com,1999:blog-4864643310537220150.post-37088025995794310642015-06-26T02:56:00.002-04:002015-06-26T02:56:28.825-04:002013-14 Year Review...<div dir="ltr" style="text-align: left;" trbidi="on">
Alyssa had a tough year after her 5th birthday. Towards the end of July, she went in for a revision of her rods, because one rod had become dislodged. The surgery and recovery went well. Then in August she was back in for her scheduled rod lengthening. Surgery went well, but Alyssa had developed an infection at the site of her rods This required a series of wound vac treatments to help her body to heal. She spent about six weeks in the hospital. It was not easy on her.<br />
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September 2013: After weeks in the hospital, Alyssa at home standing (leaning), showing us she will continue to amaze us. Towards the end of the month, she came down with pneumonia, it slowed her down a bit but she pulled through it.<br />
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October 2013: Alyssa still recovering from being sick, dressed up with her friends at Lauren's house. By the time actual Halloween came, she was feeling better and dressed up with her siblings.<br />
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November 2013: An uneventful month ( aside from Thanksgiving), which is what we needed. We stayed close to home, Alyssa didn't mind, she got to snuggle all she wanted with her dad.<br />
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December 2013: Big girl rolling! Alyssa received her first wheelchair! She looks like a big kid in it. Her little sister wants to get in it all the time too, which means remember to put the brake on so no one rolls away. Alyssa also had surgery this month and all went well (yea!!)<br />
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January 2014: Alyssa came down with pneumonia. We attempted to keep her closer to home by taking her to our local hospital. They were not equipped to manage Alyssa's needs, so she was transported to CHOP. She had a lot of fluid build up, so she had an ultrasound of her heart to make sure it was resolving. Thankfully Alyssa returned home a little over a week later.<br />
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February 2014: Alyssa returned to the hospital with another respiratory infection, she was home from the last visit about a week. She had a 12 day hospital-stay-cation. By the end she was all smiles, happy to head home!!<br />
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March 2013: Alyssa attends a Lauren's House 2 to 3 times a week for about 4 hours in order to receive her therapies and specialized instruction. This is Alyssa showing off, standing nice and tall in her stander.<br />
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April 2014: Another sleep study. The rods have helped Alyssa to grow a lot! The "extra" room has given her lungs more room. We've seen changes in her obstructive sleep apnea, so to confirm what we have observed we headed back to the sleep lab. As a result of this study, Alyssa was taken off bi-pap, she no longer required that level of support at night. Even though her apnea improved, she still had significant enough spells to warrant the use of a c-pap nightly. Small steps inthe right direction!<br />
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May 2014 Alyssa hanging with her little sister. Again another quiet month and we happily enjoyed it.<br />
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June 2014: Alyssa on the cusp of turning six, ended her 5th year with smiles.<br />
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...<i>We rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us. Romans 5:3-5</i><br />
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Anonymoushttp://www.blogger.com/profile/05765135521155260760noreply@blogger.com0tag:blogger.com,1999:blog-4864643310537220150.post-44645553372287721542013-08-20T18:41:00.000-04:002013-08-20T18:45:34.360-04:00Look Who's 5!<div dir="ltr" style="text-align: left;" trbidi="on">
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(cake made by K.our friend Hannah)</div>
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Upon her arrival into this world we called Alyssa a "spitfire". In the five years since her birth she has lived up to her nickname. Alyssa celebrated her 5th birthday 7/15/2013 and it was a low key family celebration. Yea! for normalcy. It was nice to recognize this wonderful milestone with a sense that this is the way it should be and nothing more. God placed Alyssa in our family and she is enriching our lives. At times I observe that others view a special needs child's worth as being equated to IQ; or future earnings. I'm not going to name any specific conditions; but the perception tends to be "the body is broken but the mind is good," mentality. Therefore a low IQ or little prospects for a hefty net worth equates to little overall worth. How misguided is that thinking! <br />
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Alyssa's impact on her siblings dad, and I is immeasurable. The ripple effect of which is almost as staggering. Learning how to care for another individual provides many life lessons; slowing down to take in the many (overlooked) miracles of life fosters appreciation; adapting communication styles- broadening ones receptive skills sharpens ones ability to be attentive and to focus. The practical application of which is lived out daily in our home. What does this really mean? Well some of our kids have learned to sign (minimal signs that we use with Alyssa) or learned to pick up body language cues as a way to communicate vs. relying on the spoken word. This has helped them at school and made them more observant in our community. It is amazing how much they notice! The positive impact on our family far outweighs the difficult times. It hasn't been a smooth 5 years either. We are in the midst of some of the hardest weeks. Alyssa has been managing through repetitive hospital admissions this summer due to infections and back surgeries, and is currently in week 3 of this current inpatient stay. Yet even in the difficult times we learn how to persevere, and overcome. We are cultivating strong characters that are seeing first hand God's love and promises. This world is a fallen place and so often the measure of what is worthy is superficial. I don't want to get on a soap box to justify the blessing that Alyssa has been (is) and how she and other kids like her help make the world a better place...I don't need to as it is a truth that is lived out on its own.<br />
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As far as changes for our girl.. she is a whopping 33lbs and 35 inches tall (about the size of a two year old). She is sitting up on her own briefly and sits very well supported. Alyssa rolls and moves about on the floor and can crawl with assistance. She stands in her stander and is beginning to weight bare through her legs at a table for moments at a time. She waves "hi"/"bye", signs thank you, mom, more, enough and eat; says mom/dad/ and no(occasionally). Alyssa loves to babble, clap, and play "I got your nose"- she uses the pincher grasp to nose grab! She also loves, music, singing, toys and the typical stuff of a younger toddler. We hope to have her fitted and into a wheelchair (out of a stroller) by the fall. She has driven short distances on her own in a motorized wheelchair. However safety first and more practice needed for that; so we are opting for a non-motorized chair at the moment. <br />
At the end of last summer she graduated from her crib into a big girls bed. It's a SleepSafe articulating bed ~it is awesome (thanks waiver funding)! She hosts many sleepovers for her sisters, as they love the bed too. In June 2013 she had her GJ tube removed and replaced with a G-tube. She is tolerating her feeds well, so we may be back to moving forward with increasing her oral intake too. The VEPTR rodding system has proven to be beneficial for Alyssa. Her only hiccup in the last almost 2 years occurring this summer with rod displacement and infection. In spite of this the VEPTR has most certainly helped to improve Alyssa's quality of life. At some point I am going to do a VEPTR timeline blog and expand on what it has done to her and for her.<br />
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Celebrating Alyssa's birthday (and the birthdays of all my kids) heightens for me, the gift(s) the God has given us. We remain hopeful, and thankful because God is faithful always. What a journey these last 5 years have been and we are looking forward to many more birthdays. My birthday wish for our girl...Keep on being a spitfire! We love you all the more for it.<br />
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Happy Fifth Birthday Alyssa!!</h2>
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Anonymoushttp://www.blogger.com/profile/05765135521155260760noreply@blogger.com4tag:blogger.com,1999:blog-4864643310537220150.post-6704828808271382202012-04-25T00:25:00.001-04:002012-04-25T00:25:12.497-04:00<div dir="ltr" style="text-align: left;" trbidi="on">
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<tr><td class="tr-caption" style="text-align: center;">August 2011 - Prior to surgery to correct scoliosis</td></tr>
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It's been a while and much to update on. Hopefully I can play catch up with words soon but for now pictures as they say are worth a thousand words...</div>
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<tr><td class="tr-caption" style="text-align: center;">Keeping little sister at bay...December 2012</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">December 2012</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Sticks are toys too,right? April 2012</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Happy Easter 2012! Dying eggs</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">April 2012 - Spring is here!!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">January 2012 -First cold of the new year!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">February 2012 -working with her OT, Ms. Monica</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">March 2012 Enjoying time outside</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">March fun with her siblings</td></tr>
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</div>Anonymoushttp://www.blogger.com/profile/05765135521155260760noreply@blogger.com2tag:blogger.com,1999:blog-4864643310537220150.post-75830888387824213452011-07-15T13:21:00.002-04:002011-07-15T13:42:36.683-04:00Birthday Girl!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbf7-4AHjphNh16o3LdX5tfSryKRT0zzKM_sbcniGwO0QFwg26oRanWP1Sq1swnkshcfdzD3fDlKVomRs8EICdbQkhaVuA9YzSApKZCRXGnxSyvz5uXsmHj2ODMGYTbFtrJ6f4MRStkfM/s1600/D72H9494.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 214px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbf7-4AHjphNh16o3LdX5tfSryKRT0zzKM_sbcniGwO0QFwg26oRanWP1Sq1swnkshcfdzD3fDlKVomRs8EICdbQkhaVuA9YzSApKZCRXGnxSyvz5uXsmHj2ODMGYTbFtrJ6f4MRStkfM/s320/D72H9494.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5629634064012389090" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZCE8GS33kdDLF-s9gCNKK3eRzmQYUZ0LkcrKuJ_C0jZtpLQtf_LcT5Q9PN2BpdgXMsJt3v8mZKdGUILDsaYzvgVuxVPumaX5_YPbVLTR5x2qcGOaRJvQOIS3yEWgkTH8niYu4-QcvW-s/s1600/D72H9489.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 214px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZCE8GS33kdDLF-s9gCNKK3eRzmQYUZ0LkcrKuJ_C0jZtpLQtf_LcT5Q9PN2BpdgXMsJt3v8mZKdGUILDsaYzvgVuxVPumaX5_YPbVLTR5x2qcGOaRJvQOIS3yEWgkTH8niYu4-QcvW-s/s320/D72H9489.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5629634060063837922" /></a><br />You know I wouldn’t miss updating you today. Baby girl is 3!!! Yes, three!!! To think we are here at this point is fantastically unimaginable. Praise the Lord, Alyssa is stable, happy, and very much an essential part of our family. But you know all that. What you may not know is that this is the year of transition for Alyssa and it frankly it already has been such for our entire family. <br />Once again I find it difficult to fully express the deep sense of appreciation we have for the early intervention services (birth to age 3) provided through (mainly) the Cerebral Palsy Association. Their services came to a close this week. This means the PT, OT, teacher, and clinical nurse that have worked with Alyssa pretty much since she was an itty bitty butter bean bid her a fond farewell. Not only did they treat Alyssa, but they were so supportive of our family~ helping me to grow as a special needs mom. They were great listeners, provided guidance, support and more. Most importantly though the left me {us} with the sense that they each truly cared for our girl; that above all else has been meaningful. <br />Not one of them placed limits on Alyssa’s abilities or potential but challenged her and encouraged her to move forward and work hard. God was good in providing each of these individuals in Alyssa’s life, because not all therapists, clinicians would facilitate the needs of a baby-toddler (whom isn’t expected to be much by definition of her diagnosis) in such a resolute albeit loving manner. It went beyond just doing their job; they made me feel like they genuinely wanted to set in motion the thought rather the action of Alyssa can do and will do…truthfully they did just that. These ladies came into our home weekly, and participated in helping to make Alyssa stronger, taught her how to play, and manipulate toys etc. They did with Alyssa many of the things doctors told us she would never do! It wasn’t a concerted team approach outlined with goals and a treatment plan that made the difference; no these are amazing therapist, women who have cultivated approaches that in meaningful ways with personal style did promote growth-strength in a child {and family} beyond expectation. Thank you Kris, Patti, Francis, Kim and Robin more than words can say THANK YOU!!! <br />We could foolishly focus on the “failures” of Alyssa’s body and mind giving way to flawed notions that Alyssa is less than because she isn’t the emblematic 3 year old. Alyssa doesn’t talk like a typical 3 year old; she babbles like a 9 month old. On her own Alyssa doesn’t sit up for very long, and can’t stand, she needs support to do these things the average 3 year old would do. Unlike many other 3 year olds, on this her birthday she won’t tear through the wrapping paper to see what gift lay in wait; rather with expectant eyes will watch her siblings do it for her or with hand over hand assistance try it herself. To dwell on what could have been is a waste of energy. <br />We’d rather celebrate the gift of a daughter whom Christ is using to teach us faith, humility, compassion, patience, courage and most of all love. (Psalm 25 1-2,4-10) We will celebrate her engaging smile, joyful personality, and her squeals of delight. We will sing with her, play and in the end enjoy all the nuances that make her dear to us. In three years Alyssa transitioned from a newborn labeled incompatible with life, to an infant hospice care patient destined to die; to a medically fragile baby in need of multi disciplinary services; into a medically involved toddler and now a special needs pre-school child. As a Pre schooler, she will receive services through our local intermediate unit. This means new people to impress *wink*wink*. One thing I am learning in this journey is that your child has to have a willingness to prove herself to others, and Alyssa does. Alyssa will need to show her stuff to this new group of supporters and again break the preconceived notions attached to her diagnosis/cognitive level. I will at another time explain the particulars of how preconceived ideas affect a child with cognitive and physical issues. In the meantime; Folly has no place here, she is busy trailblazing and we are busy trying to keep up.<br /> Today some people will assemble in eagerness for a fictional story about a young man who may or may not “save” his “people” from the evil that surrounds them. There are those who celebrate this fictional young man for his remarkable character; they revere his power and abilities even though throughout this illusory tale he is shown to be faulted; at times selfish and short sighted. I admit, I too have taken pleasure in the entertainment of the unfolding fairy-tale as it is quiet a story. Today chronicles the end of his journey whether he succeeds in saving his people or not his story ends. Anyone of us can witness the recounting of this story for about 10 bucks or so at the local Theater. <br />Today Alyssa’s birthday can highlight another story. A true account, the story of Jesus; for His power, His goodness, and abilities are evident in her miraculous life. For FREE you have already witnessed what Jesus did and benefitted from His saving grace. He saved His people and throughout his journey remained faultless, caring, and inspired notwithstanding He died so that His people could live and yet his story continues. As we celebrate Alyssa’s birthday, I cannot ignore the fact that God the author of life continues His story through every breath she takes, and every memory we make and in every heart that chooses to embrace in faith what is. What is, is this: I praise the God of grace; I trust his truth and might; He calls me his, I call him mine, my God, my joy, my light. “Tis he who saveth me, and freely pardon gives; I love because he loveth me, I live because he lives.” ~ Horatius Bonar<br />HAPPY BIRTHDAY ALYSSA!!! We love you!<br />By the way Alyssa is now a whopping 28lbs is 2’ft 7” tall. She is wiggly and giggly. Today of all days she has started with a summer cold (sneezing runny nose) Please pray that she overcomes this easily and quickly. Alyssa is a few weeks away from her major (VEPTR) back surgery (to correct her scoliosis) and we really don’t want to have to reschedule or have any other unnecessary complications. I will be able to update more as August approaches. We thank all of you who continuingly keep Alyssa in thought and prayer. Love to you all from Alyssa and all of us!!Anonymoushttp://www.blogger.com/profile/05765135521155260760noreply@blogger.com2tag:blogger.com,1999:blog-4864643310537220150.post-76276696996600360802011-04-24T21:36:00.006-04:002012-01-30T20:18:36.904-05:00Happy Easter!<div align="center"><strong><span style="font-family:georgia;font-size:180%;color:#003300;">HAPPY EASTER!!</span></strong><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQSe1dpDYM5sXBQePQ3pKSXEIqNj4AvS4IY4M9RKO2v8Oz7rNEOng_nNXrYz7FVgffESMEbyaPPddAEhQ3XcsMPLvObxEFE0KelG6WYbfG_YlmU5M3_GO5T4KxUBCqGbttjsKIyJUxVr4/s1600/easter11+446.JPG"><strong><span style="font-family:georgia;font-size:180%;color:#003300;"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5599329808608218866" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQSe1dpDYM5sXBQePQ3pKSXEIqNj4AvS4IY4M9RKO2v8Oz7rNEOng_nNXrYz7FVgffESMEbyaPPddAEhQ3XcsMPLvObxEFE0KelG6WYbfG_YlmU5M3_GO5T4KxUBCqGbttjsKIyJUxVr4/s320/easter11+446.JPG" /></span></strong></a> </div><br /><div align="left">It certainly been a long winter! Since January Alyssa has been managing and getting over some difficult respiratory concerns. The last being just a week ago. Thankfully we have the equipment to <span id="SPELLING_ERROR_0" class="blsp-spelling-corrected">mimic</span> a lot of what the hospital would do and her doctors provided clear instructions and made themselves available when <span id="SPELLING_ERROR_1" class="blsp-spelling-corrected">questions</span> arose. We are now glad to see the breeches of sunlight and feel its' warmth on our backs. Best of all, Alyssa is well and all smiles! </div><div align="left"></div><br /><br /><div align="left">The past few months varying members of our <span id="SPELLING_ERROR_2" class="blsp-spelling-error">Trisomy</span> 18 community have been dealing with chronic health issues with little resolution, ongoing sickness with viruses, and sadly the loss of several little ones. It's difficult to express the level of respect I have for families that with grace and love prepare to welcome a child they know ahead of time will likely be born "sleeping". I often think boy we had it "easy", Alyssa's diagnosis was a surprise for us ( we did not have certain stresses that a diagnoses in <span id="SPELLING_ERROR_3" class="blsp-spelling-error">utero</span> may bring on). Simply put the courage and commitment a mother and father (and <span id="SPELLING_ERROR_4" class="blsp-spelling-corrected">family</span>/support system) take on, to celebrate the life within the womb through the birthing process, and upon that <span id="SPELLING_ERROR_5" class="blsp-spelling-corrected">child's</span> arrival whether his eyes are open or not...is beautiful. I don't want to minimize that very real <span id="SPELLING_ERROR_6" class="blsp-spelling-corrected">guttural</span> experience to not see the light of life in your newborns face or seeing a life extinguish shortly after birth. However as a bystander, with a child whose own journey is fragile I am encouraged by their strength. Through their grief they found joy, in their hope love flourished, and because of <span id="SPELLING_ERROR_7" class="blsp-spelling-corrected">their</span> grace many have been humbled. These babies regardless of their time here on earth enrich the lives of those who love them and those of us who come to know his or her "story". </div><br /><div align="left"></div><br /><div align="left">As a T18 parent, hearing of several losses in a short time period it is difficult emotionally. <em>Especially if your own child is dealing with a health <span id="SPELLING_ERROR_8" class="blsp-spelling-corrected">stress's</span> like frequent hard hitting <span id="SPELLING_ERROR_9" class="blsp-spelling-corrected">respiratory</span> issues</em>. This is when it helps to talk with other mothers (fathers, caregivers). Not only is it nice to be uplifted by someone else, but it is very healing to lift someone e<span id="SPELLING_ERROR_10" class="blsp-spelling-corrected">lse's</span> spirits up. The ability to share information, or <span id="SPELLING_ERROR_11" class="blsp-spelling-corrected">experiences</span> goes a long way. If you are coming across this blog and know of a family that has a child <span id="SPELLING_ERROR_12" class="blsp-spelling-corrected">diagnosed</span> with <span id="SPELLING_ERROR_13" class="blsp-spelling-error">Trisomy</span> 18; please let them know they are not alone!! We are out here and have a rapidly <span id="SPELLING_ERROR_14" class="blsp-spelling-error">growing</span> kind-hearted <span id="SPELLING_ERROR_15" class="blsp-spelling-error">Trisomy</span> 18 community. In fact a <span id="SPELLING_ERROR_16" class="blsp-spelling-error">Trisomy</span> 18 mom is creating a map to indicate where various families are located; in hopes that support can be found not only on-line but locally too. To get added to this map or if you'd <span id="SPELLING_ERROR_17" class="blsp-spelling-corrected">like</span> more information; please contact Jill at <a href="mailto:southerngirl72j@comcast.net">southerngirl72j@comcast.net</a></div><br /><div align="left"></div><br /><div align="left">On a very upbeat note, yesterday we along with 3 other <span id="SPELLING_ERROR_18" class="blsp-spelling-error">Trisomy</span> 18 families were able to meet face to face at an event hosted by Variety Club of Philadelphia. This was a day at Sesame Place for families with special needs kids, and we 4 families decided to make the trip. I am still getting my mind around the fact that all our kids were there. When I have permission from all the parents I will post pictures, but the oldest was a cutie-pa-<span id="SPELLING_ERROR_19" class="blsp-spelling-error">tootie</span> 5 year old girl, followed by our star Alyssa at 32 months, next a sweet girl at 28 months and an adorable 24 moth old boy. Each of our kids were as <span id="SPELLING_ERROR_20" class="blsp-spelling-corrected">different</span> as could be as far as health concerns, a milestones but then again there were some commonalities too. It was just great to meet!! We hope to do it again and add to the group as we know there are others out there not to far away.</div><br /><div align="left"></div><br /><div align="left">So that's been our month in a nutshell. Miss Alyssa despite her repeated sickness has kept up her weight!! She is becoming more active with this increased weight, kicking and <span id="SPELLING_ERROR_21" class="blsp-spelling-corrected">rolling</span> more. She has picked up a size or so in clothing and had to have her back brace refitted. We are on the track of planning surgery for her scoliosis, that is a blog segment in and of its self . Our hope is that this will be an uneventful spring and summer health wise and full of fun and smiles. I'll post some additional pictures of our day to day; until next time!!</div><br /><br /><br /><div align="left"></div><br /><br /><br /><div align="left"></div><br /><br /><br /><div align="left"></div><br /><br /><br /><div align="left"></div>Anonymoushttp://www.blogger.com/profile/05765135521155260760noreply@blogger.com0tag:blogger.com,1999:blog-4864643310537220150.post-64206642702168258972011-03-21T21:27:00.006-04:002011-03-21T22:12:06.045-04:00<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFRplRbu0L0Ai_CAwOQwvS_smEQ33LZrfokSNBpCCHftVd-xRb0JHmiUrysTuRKdlERimbLdx8E0nOzStzluasqgSl4T0l63t4ZfRd9thSs4cgKx39ZxZ8vxzUOw6WwvzY1heMHfWUD9c/s1600/augnov15+003.JPG"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5586711816240887250" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFRplRbu0L0Ai_CAwOQwvS_smEQ33LZrfokSNBpCCHftVd-xRb0JHmiUrysTuRKdlERimbLdx8E0nOzStzluasqgSl4T0l63t4ZfRd9thSs4cgKx39ZxZ8vxzUOw6WwvzY1heMHfWUD9c/s320/augnov15+003.JPG" /></a> Alyssa's first Phillies game! They played the Mets and won!! She loved the noise of the crowd, the lights and watched the Phantic do his stuff. It was a blast.<br /><br /><br /><br /><p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOy1ysZHNNe_1xMSNIOkgLlf2vdysK0NjpK4-sfGCZokdckEMUGN6QhGJRlyug6Apdku9At58RZou07dYWAHilfL787WOizzTKSHPCk26lPCmxUhH30999WPxZOoXRLgCxMfvbYiKWIrY/s1600/feb211+106.JPG"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5586711374136367026" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOy1ysZHNNe_1xMSNIOkgLlf2vdysK0NjpK4-sfGCZokdckEMUGN6QhGJRlyug6Apdku9At58RZou07dYWAHilfL787WOizzTKSHPCk26lPCmxUhH30999WPxZOoXRLgCxMfvbYiKWIrY/s320/feb211+106.JPG" /></a></p><p>As you know purple is her signature color and anything with butterflies we love. So when having her AFO's made we chose just that! The cute lite up sneakers were a steal at Payless and just sassy enough to meet our standerds. Alyssa isn't walking but she wears her shoes when in her stander and walker. I like her to wear them on and off just to get the "weight" of wearing shoes, as a way for her to have imput on her legs and feet. It's cute to see her kick up her feet!</p><p><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjueNBnMVCjTKJKWDwKQql7l5VEzFkfIkXll4N6nwCRqNYKV8aqv-MJHU7k5oH1p1uhtpl6sJterilYgF7Fu43JJ74fl0L6Mhg_WSGugG6bFaU8Be-ewaNyhiohSyD3rYE6g04kp5KiN1k/s1600/feb211+048.JPG"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5586711205901789618" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjueNBnMVCjTKJKWDwKQql7l5VEzFkfIkXll4N6nwCRqNYKV8aqv-MJHU7k5oH1p1uhtpl6sJterilYgF7Fu43JJ74fl0L6Mhg_WSGugG6bFaU8Be-ewaNyhiohSyD3rYE6g04kp5KiN1k/s320/feb211+048.JPG" /></a> This inexpensive walker is a favorite spot of Alyssa's. She can stretch out her legs and play. It isn't as confining as her stander (which we love as it serves a greater purpose.) This walker allows Alyssa to hang out. She will make small pushes in it. We like that the seat is extra deepwhich gives her support.<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNLfG261ZVuGEfTpjlsGZXUXJpJTROg0Nvj1Qjew4FdGMPPuwsdzZZjgmzM8UxlADYeBtUC7YpKS9BQ26JdO_C4RaVeae-B6ovC6vd8LkVzyZ7B4Pe1OJ6H-3VOgmjkEvRfocd1gkRCZo/s1600/feb211+046.JPG"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5586710865810478562" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNLfG261ZVuGEfTpjlsGZXUXJpJTROg0Nvj1Qjew4FdGMPPuwsdzZZjgmzM8UxlADYeBtUC7YpKS9BQ26JdO_C4RaVeae-B6ovC6vd8LkVzyZ7B4Pe1OJ6H-3VOgmjkEvRfocd1gkRCZo/s320/feb211+046.JPG" /></a> Alyssa's dad put the entire walker on a dolly. It gave the extra few inches we needed as she was getting tall for the walker ad better wheels for mobility. The original walker wheels seemed to get stuck. This creative fix, gave the walker addded life, before passing it down to her little sister!<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKewF3PJTRUGRktRCMFA8nRozCSzt3tP-xFHqrDgCQHZPw2bl-0wbBg_zk9D7KwuG3mq1bKCdO4OFIHH-pXwo5T1ziwiHpbwP1kd9HArKsr4j65o1i5gYYA32ycVWhml_dAl-cpUsJRxk/s1600/feb211+017.JPG"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5586710364394259858" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKewF3PJTRUGRktRCMFA8nRozCSzt3tP-xFHqrDgCQHZPw2bl-0wbBg_zk9D7KwuG3mq1bKCdO4OFIHH-pXwo5T1ziwiHpbwP1kd9HArKsr4j65o1i5gYYA32ycVWhml_dAl-cpUsJRxk/s320/feb211+017.JPG" /></a></p>Anonymoushttp://www.blogger.com/profile/05765135521155260760noreply@blogger.com1tag:blogger.com,1999:blog-4864643310537220150.post-78551059720687744082011-02-05T11:35:00.015-05:002011-02-06T00:07:14.988-05:00Happy New Year!Alyssa wearing her new big girl glasses<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYw1CUluHx2w9b2z6dBA8Qklt9kDEuSgxucq5I_PCjagE7wqU-3YezTwfSNbczsEReMPt7u7topRlSnZZwNw1mXU7Kqk6TUFlafcZurFOZNNGTxDGWTIwqGhKtb09Pc6HgYdRUaHRtGAc/s1600/kidsdec10+083.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYw1CUluHx2w9b2z6dBA8Qklt9kDEuSgxucq5I_PCjagE7wqU-3YezTwfSNbczsEReMPt7u7topRlSnZZwNw1mXU7Kqk6TUFlafcZurFOZNNGTxDGWTIwqGhKtb09Pc6HgYdRUaHRtGAc/s320/kidsdec10+083.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5570415427443313154" /></a><br />Okay a late new year greeting, but it is still the dawn of a new year! I can't believe that it's been about 4 months since last checking in, although I do have a few good excuses ( I think). Today the older kids are out of the house and the youngers are sleeping which has provided that golden opportunity and then I read my e-mail and got an extra push of motivation and here it is:<br /><br /><strong>Anonymous has left a new comment on your post "A pregnant mom whose baby has Trisomy 18 is lookin...": I think it is a horrible and very SELFISH decision to put a helpless child through all the pain and suffering with a disorder like trisomy (of any kind). Losing a child is painful, but prolonging agony is even worse. Shame on you all..... </strong><br /><br />Before I give an update on Alyssa I want to comment to "Anonymous",: <em>There is a bitterness and hint of anger in your message that I find inappropriate. One of the reasons I blog about my Alyssa's condition is to dispel many of the shortsighted and incorrect documented medical journals etc. regarding Trisomy 18. Also I hope to edify the medical community about what it is like to live with/care for a child with T18. Ultimately though I want to encourage other parents/families on this journey or about to embark that there is hope and much to be thankful for when a precious child (in utero or in the world) has T18. <br /><br />Alyssa leads a regular life similar to my NON T18 kids. Occasionally Alyssa will have an experience unlike my other kids, such as a surgery. This is an experience she shares with many kids managing special needs (like Cancer, SMA, Ehlors Danlos)and it is a small part of her life. The bigger part is filled with smiles, laughter, friends and love. Alyssa is a happy kid. As for me, a T18 mom, I'll quote Horatius Bonar <em>"I praise the God of grace; I trust his truth and might..."</em> <br /><br />Shame is the least emotion that I feel in regards to raising Alyssa. I could provide a list of many other emotions but if you READ this blog and/or view our pictures/videos..it is obvious that love, joy, and gratitude top the list. I prize the privilege of prayer and will pray for you. I will pray that grace and understanding will set up shelter in your heart. That you will be humbled and released from the pain you harbor. It is obvious you are speaking from a world of hurt, my you come to know God's saving grace.</em><br /><br />Since I last posted we did welcome a new little one into our family. In October Leah Faith was born. True to the nature of our family we had a little drama surrounding her birth. While I labored and gave birth, her Dad ~ my dear husband~ decided to jump ship! That's right with the exception of the breaking of my water, he missed the entire labor and delivery due to having a heart attack. Providentially he was at the hospital that morning otherwise it may have been a fatal heart attack. Thankfully both he and baby Leah are fine. My husband feels much better now AFTER the heart attack and the placement of some stents; than he did before. Now he has a normally functioning heart. Since October we are making lifestyle changes to promote a heart healthy lifestyle for not only my husband but our entire family. I encourage you all MEN and women to take time and look at your risk factor for cardiovascular disease. <br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6KAOWaSNVBCcUq2FRjM_HLjkWpSTf1p93wlyBRtluusa6tGYu2FIxb_RjPU3WuRMkc96GPtf3P_TX_5QTIh8mA_i03vu8OSP21INTsK1G23KVamqQxtUwNGdfZJgHAib9NwPnA3mx1EY/s1600/uptodec10+147.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6KAOWaSNVBCcUq2FRjM_HLjkWpSTf1p93wlyBRtluusa6tGYu2FIxb_RjPU3WuRMkc96GPtf3P_TX_5QTIh8mA_i03vu8OSP21INTsK1G23KVamqQxtUwNGdfZJgHAib9NwPnA3mx1EY/s320/uptodec10+147.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5570417022597703394"/></a>(Leah and her Daddy meeting, shortly after her arrival)<br /><br />I do have to mention that the hospital did a terrific job managing the entire days event. I can't write down how Topsy turvy the day was nor can I say thank you enough!! We can now put under our belt the title of being the first family to have obstetric and cardiac care simultaneously!! The cap to all of which was that a day after being released from the hospital as a post partum mom, I went back with our newborn infant to pick up my discharged heart patient husband!!<strong>(sigh)</strong><br /><br />We couldn't have moved through October and the following weeks with out the support of our church family, friends and extended family. Again it is difficult to express in written form how wonderful they each were and how they met our needs in a variety of ways. Thank you seems so small, but it is with a deep sense of gratitude and love that we do thank them for their support and help.<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4HI2hh0zMPRqAuzf1iTIJcGMK1ErlXEBeUpb0326m2ZAqimXCz9Cig9SSTs81CWoXK3DvLr0SjrveUHbJ9TYlWFLTvat52tQIv2NACe6Uen7kZvFwqpPHjeeiZwgYkPGm1k6BEdqCIhw/s1600/kidsdec10+012.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4HI2hh0zMPRqAuzf1iTIJcGMK1ErlXEBeUpb0326m2ZAqimXCz9Cig9SSTs81CWoXK3DvLr0SjrveUHbJ9TYlWFLTvat52tQIv2NACe6Uen7kZvFwqpPHjeeiZwgYkPGm1k6BEdqCIhw/s320/kidsdec10+012.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5570415143548005074" /></a>(Alyssa standing in her stander)<br /><br />Alyssa is now 30 months old and weights 22 pounds. She continues to be a delight. In September we picked up her stander and use it routinely. She loves to stand tall! Alyssa is getting use to being a big sister. When we first brought Leah home, Alyssa was quick to check out the screaming bundle. Now she rolls her eyes at Leah, when she cries; as if to say " your still here?". They are discovering each other and tolerant of each other (insert a sly smile here). It's not easy to give up the spot of being the baby. Alyssa has really developed a love for music. So this was a musical Christmas for her. She received various music toys, she loves the maraca's and the bells the best. She is still very vocal , and routinely calls for her "dadda". Occasionally she will say "mUUUmm" or "mumma". Alyssa has an assortment of vowel sounds and baby babbling that she bombards us with on a given day, of course she is most vocal when playing with her big sister or brother(s).<br /><br />Vomiting had continued to be an issue for Alyssa and in 10 months her weight gain plateaued. About 3 weeks ago,she had surgery to convert her G-tube to a GJ tube. Normally this would not be a surgical procedure however her stoma ( the site of the G- tube) required stretching; so this meant surgery. Alyssa came through with flying colors and has not had any significant issues with vomiting since!! Alyssa eats very little by mouth and now that this vomiting issue seems to be better controlled we can begin again to focus on feeding her orally too. By the way the she put on 2 pounds since the surgery~ wehooo!! She had been 20 lbs for a long time.<br /><br />Currently Alyssa is well managing a mild case of pneumonia. She has finished up her steroids and working on finishing her antibiotics. We did make a trip to DuPont for this concern, she did not require hospitalization. She was seen in the ER, and after a nebulizer treatment, medication and a chest x-ray was released home. So we have been managing it here for the last week and as I said she is doing fine. This sickness came on the heels of the rest of us having strep. So we have had a sick house in one form or another for 2 weeks. I am looking forward to some spring cleaning and the summer!<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEfeDY4bBVeQwBLDABmL5RcQ2zD6G0bTTbsx4XxcIduvgpGdC55ealR5beruS6TpR8dlozC-35LhnwNHhNhCFI2fx1MLkRlooxVn7cr3xrWkGCtbcLDuKptonPi2c30ex3QCp_2cVJGs4/s1600/augnov15+023.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEfeDY4bBVeQwBLDABmL5RcQ2zD6G0bTTbsx4XxcIduvgpGdC55ealR5beruS6TpR8dlozC-35LhnwNHhNhCFI2fx1MLkRlooxVn7cr3xrWkGCtbcLDuKptonPi2c30ex3QCp_2cVJGs4/s320/augnov15+023.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5570425592269014274" /></a>(At the beach in August) <br /><br />So that's been our last few months. Overall Alyssa has been healthy and making strides in her skills. We remain thankful for the time we have together as a family. Each event whether joyful like Leah's birth, concerning like Ed's heart attack or a continual trial such as managing T18 issues; I am gaining a deeper understanding of my value and worth before God. I am forever grateful for my caring friendships and for belonging to biblically sound church as well as our families involvement in a Christian community. By the by to Mr./Mrs/Ms. Anonymous, it is true that losing a child is painful.I trust in the Lord, and His way in determining the length of my child's life. In the mean time I am thankful for his all consuming grace. I have 5 children and am thankful for each, and I do not know when anyone of them may pass. All I can do is my duty (with a glad heart) and be their mom.Anonymoushttp://www.blogger.com/profile/05765135521155260760noreply@blogger.com5tag:blogger.com,1999:blog-4864643310537220150.post-25007058247557675102010-09-28T10:30:00.005-04:002010-09-28T10:54:24.075-04:00Sad news from Mike and Melanie...Nearly a year ago Melanie had contacted me when pregnant and desiring encouraging support, as in utero her daughter was diagnoised with Trisomy 18. She and Mike needed HOPE and hope was something I knew we as a community could give!! The Ritzman's were embraced by our wonderful T18 community and many of you contacted, befriended and supported them as they awaited and then welcomed their daughter Olivia. The journey of T18 is so varied and we each our grateful for every moment no matter how short or long we have with our miracle child. Thankfully the Ritzman's enjoyed their daughter for 7 months however sadly Olivia passed away yesterday. Mike and Melanie I am sending my heartfelt prayers to you and your family. I pray that the Lord will bring your family comfort and peace during this time. Below I've posted (with permission)a copy of the e-mail I received from The Ritzman's on Monday, regarding their miracle daughter Olivia.<br /><br /><strong>Sad news from Mike and Melanie...</strong><br /><br />Hello Everyone,<br /> <br />I wanted to let everyone know that Olivia passed away earlier this morning at 1:45am. Yesterday afternoon we decided to call hospice to help manage her pain. Serveral people were able to stop by last evening and visit with Olivia. At 11:30pm last evening, Melanie and I were in bed wondering whether Olivia would make it through the night. Shortly, thereafter we received a call from her nurse to come immediately. Melanie and I spent the remaining moments holding, loving, kissing, and crying with Olivia as she passed from her mother's arms into the arms of a waiting Heavenly Father.<br /> <br />Olivia is now completely free from the Trisomy 18 that has plagued her body.<br /> <br />Please pray for us as we deal with Olivia's death. Please pray for us as we help the children deal with Olivia's death.<br /> <br />Below is the obituary that will be in tomorrow's Lancaster paper.<br /> <br />Olivia Joy Ritzman, daughter of Michael & Melanie Ritzman of Christiana passed away at home on Monday, September 27, 2010. She was born in Children's Hospital of Philadelphia on February 23, 2010. Olivia Joy was born with Trisomy18 known as Edwards Syndrome. For her parents it was a privilege to love and care for her for the 7 months that God blessed them with her. Surviving besides her parents are 9 siblings: Tori, Alan, Katherine, Jacquelyn, Lucas, Elizabeth, Steven, Gabriel and Zoe Ritzman. Also surviving is a grandfather I. Glenn Ritzman and uncles and aunts. A memorial service will take place from Calvary Monument Bible Church, 1660 Mine Road, Paradise, PA on Thursday, September 30th at 11 a.m. with Rev. Robert M. Reid officiating. The family will greet family and friends following the service. The interment will be private. In lieu of flowers contributions may be made to The Fleming Foundation, c/o Mennonite Foundation Inc., 201 East Oregon Road, Suite 103, Litiz, PA 17543-7440 to help other families financially care for special needs children. Arrangements by the Shivery Funeral Home, Christiana & Paradise. shiveryfuneralhome.com<br /> <br />Thank you for all the prayers. If any of you have been forwarding my emails to others, please feel free to do so with our email attached. Please feel free to share any personal feed back.<br /> <br />Mike<br /><br /><br /><strong><em>I also recently learned that Mallorie Rose passed away last week. Please keep her family in your prayers too. A link to her webpage is on the side , if you would like to learn more about Mallorie Rose.</em></strong>Anonymoushttp://www.blogger.com/profile/05765135521155260760noreply@blogger.com0tag:blogger.com,1999:blog-4864643310537220150.post-24448092458771318422010-09-13T20:46:00.006-04:002010-09-13T21:11:35.215-04:00Alyssa's 5K Key Note Speech<span style="color:#003300;">Just wanted to share (better late than never..hopefully) the speech I read at our Alyssa's 5K Trisomy 18 Awareness Event back in July. Alyssa's is doing well, she did have a serious respiratory infection that started a few days after the 5k that lasted till mid-August. Yet we are back on track. I'll be sure to update more soon!!<br /></span><br /><br /><br /><div align="center"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYRNjxYyJwjEJtceRWfR2Sue9e9ZrHwUoUywlK0286rYFjaQDSNcKsHrUwI4vgVH9sOYDor6UZGybMwHUK_YO2PFglxHUZey1Y4gAhmp-G0r98dzSXklH5Jnu7_WI6CHcro0nG7-5yKkI/s1600/Alyssa's+5K_158.JPG"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 256px; DISPLAY: block; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5516568280893199218" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYRNjxYyJwjEJtceRWfR2Sue9e9ZrHwUoUywlK0286rYFjaQDSNcKsHrUwI4vgVH9sOYDor6UZGybMwHUK_YO2PFglxHUZey1Y4gAhmp-G0r98dzSXklH5Jnu7_WI6CHcro0nG7-5yKkI/s320/Alyssa's+5K_158.JPG" /></a>The Shihadeh Family (member #7 to arrive in October)<br /><br />Alyssa laughing with her daddy...<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEideYvaa2A0jsxxUpDOjxsUc96DnQzbd5-iWaL2S5Giz32I-ZITXy_pOyGYalFt0jKG9bBwEGGfeC0ifflLb5QD4X8E8yeh7TLp29PBFoCKZiJ6Ut73yphGH6S7PxF9kS6SMWSD4yPwh0I/s1600/Alyssa's+5K_079.JPG"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 256px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5516569086053304018" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEideYvaa2A0jsxxUpDOjxsUc96DnQzbd5-iWaL2S5Giz32I-ZITXy_pOyGYalFt0jKG9bBwEGGfeC0ifflLb5QD4X8E8yeh7TLp29PBFoCKZiJ6Ut73yphGH6S7PxF9kS6SMWSD4yPwh0I/s320/Alyssa's+5K_079.JPG" /></a><br /><div align="center"><strong>KEYNOTE SPEECH:</strong><br />In promoting this race we naturally shortened the event name to Alyssa’s 5k, as it just rolled off the tongue a little easier. However now it’s time to highlight the underlying theme of Alyssa’s 5K which is Trisomy 18 Awareness and the message that Hope Matters! </div><br />As many of you know once Alyssa was diagnosed the doctors offered us little to no hope that she would survive. In fact it seemed as though the instinctive drive that doctors have to solve/fix OR remedy complex issues vanished as soon as the realization that our daughter had Trisomy 18 surfaced. Their purposes then became preparing to withdrawal life saving measures and dissuade us from thinking that our daughter would be coming home. With the support of our Pastor and his wife, along with a host of friends, family and our church family we prayerfully moved through those first days and weeks; finding small encouragements and weaving together the understanding that with faith and hope we would persevere.<br /><br />Much like many other T18 families the term “Incompatible with life”; surfaced early on in our child’s life The phrase burned into my brain, as I couldn’t comprehend how the medical community could so matter of factly determine that optimism was not reasonable in connection to any diagnosis; let alone one that directly affected our child. We knew of the statistics and understood the grim situation but not to have ANY hope?? In time I realized that if we had allowed the doctors’ firm assertions that our child would not survive our hope would have diminished; we would have spent our first year of Alyssa’s life waiting for her to die. Instead, because of hope we enjoyed her as much as we could.<br /><br />I’m not saying that those early days were easy by any means, we (I) was virtually cut off from the outside world in order to protect our daughters health; as a simple cold could be life threatening. We did have a few scares and many concerns; because of hope we were able to celebrate every milestone; literally counting and being thankful for each day. At day 189 I realized I needed to outwardly exercise a little more faith and began acknowledging monthly “birthdays”. This phenomenon~ counting days lived~ is something many T18 families do.<br />Families respond to devastating illnesses in a variety of ways and if a family doesn’t have adequate spiritual or emotional/social or concrete resources their course will be much different than ours; as the way by which they manage that illness will be based solely on the medical communities opinions of that diagnosis~ and if that opinion is Incompatible With Life. Just imagine what that family might elect to do...or might not do….<br /><br />When we left the hospital Alyssa was placed on Hospice and we had to wrestle her medical team in order for her to come home with an APNEA monitor (explain what it is). We were not provided any direction as to what to do if our daughter should survive b/c of course in their minds she wouldn’t. I firmly believe that had they offered us “hope” through practical measures like connecting us to other T18 families, the T18 community through organizations like SOFT or The Trisomy 18 organization, by providing updated medical information regarding the T18 vs. providing us facts over 15 years old; trust, in our daughter care providers would have been built and it would have significantly reduced our fear. Mind you we had some wonderful health professionals involved in Alyssa’s care and we are so grateful for them and the work that they do. Our goal is not to criticize dedicated nurses or doctors. We greatly value them. Our goal is to change the perception of Trisomy 18 Awareness.<br /><br />The purpose of raising T18 awareness is not to find a cure; unfortunately because this is a chromosomal error there isn’t one. The purpose is to provide HOPE to other families affected by this syndrome (or like syndromes), and to change the perception of Trisomy 18 for the medical community. To this day when we go to an appointment for Alyssa, her doctors are stunned by her “good health”. Even though Alyssa is screen every 6 months for cancer, and has a life threatening lung condition amongst other health concerns; SHE IS in good general health. When we meet a doctor for the first time, the often repeated question is…Are you sure she has full T18? Do they have the correct diagnosis? Doctors are genuinely surprised to meet Alyssa. I am often asked about her condition by doctors as they want more insight.<br /><br />Sadly, just like many parents of special needs kids we must be warriors battling health –providers or insurance companies to get the adequate care or resources for Alyssa. It is heartbreaking to know that lives saving medical procedures are at times denied due to a T18 diagnosis. With increased awareness to the many miracles of Trisomy 18 the level of shock of “long term survival” could be minimized and measures to increase the quality of life for a T18 baby/child could be maximized. My HOPE is that the phrase Incompatible with life will disappear, with updated research of this condition and with increased knowledge of life proof miracles like Alyssa.<br /><br /><br /><div align="center"><br />As I mentioned there is no cure for T18 and Alyssa is not healed from them this syndrome. We live each day with the knowledge that our daughter is medically fragile and is “out living “her prognosis. It is our faith in God that strengthens us; it is our hope in one another and each of you that comforts us. Hope Matters.<br /><br /><strong>Closing</strong> </div><br /><br /><div align="center"><br />There are few things in this world that can be considered a great equalizer to the human condition; having a special needs child is one them. It crosses race/socioeconomic/and gender lines. In our brief journey we have found that many families regardless of where they were prior; once faced with this type of situation experience similar struggles. The financial struggle to provide not the basic needs for our child but the tools that will assist our child to live a quality life. The proceeds from today will be used to assist in Alyssa’s care. There are many simple yet expensive products/ developmental equipment and toys out there that would make our day less complicated and allow Alyssa to be more independent. Often these are things which aren’t covered through insurance. It is family to family support that knits our community together and without this support; today couldn’t have happened. Our gratitude goes to Kim Small and her family, the Kaptur family, the Judge family and many other families and individuals who’ve showed their support by donating to our race today. Our family again thanks all of our sponsors, volunteers and you all for your abundant support. </div><br /><br /><div align="center"><br />Former Senator Rick Santorum and wife Karen also have a daughter with Trisomy 18. Their daughter Bella recently celebrated turning 2 also. In a recent article Rick wrote: <span style="font-family:Courier New;"><em>Most children with trisomy 18 diagnosed in the womb are aborted. Most who survive birth are given hospice care until they die. In these cases, doctors advise parents that these disabled children will die young or be a burden to them and society. But couldn't the same be said of many healthy children? All children are a gift that comes with no guarantees. While Bella's life may not be long, and though she requires our constant care, she is worth every tear.Living with Bella has been a course in character and virtue. She makes us better. And it's not just our family; she enriches every life she touches. In the end, isn't that what every parent hopes for his or her child.<br /><br /></em>We echo those sentiments for our Alyssa. As her dad often says: She is a special girl we love so much and she has made our family stronger than ever. She loves kisses, hugs, music and T.V.! She is a joy. Finally before letting you go and get cooled off from this heat I’d like to express my gratitude to my husband Ed, our kids Nathen , Ethan, Jessica and Alyssa for allowing so much of our private lives to be shared. Assisting in the organizing of this event is truly humbling and healing for me as her mother. On behalf of our entire family thank you for coming out; while today was for Alyssa; please remember that it was about increasing awareness of Trisomy 18 and I hope that we met that goal!! Thanks so much be safe and we will see you next year!! </span></div><br /><br /><em><span style="font-size:78%;">To Read more of Rick santorum's article go to: </span><a href="http://www.philly.com/inquirer/opinion/20100505_The_Elephant_in_the_Room__Two_years_worth_every_tear.html#ixzz0zSaEm"><span style="font-size:78%;">htp://www.philly.com/inquirer/opinion/20100505_The_Elephant_in_the_Room__Two_years_worth_every_tear.html#ixzz0zSaEm</span></a></em><br /></div><br /><br /><div align="center"></div>Anonymoushttp://www.blogger.com/profile/05765135521155260760noreply@blogger.com0tag:blogger.com,1999:blog-4864643310537220150.post-53377597896765112492010-08-31T23:02:00.004-04:002010-08-31T23:09:05.293-04:00Alyssa's 5K went great!If you'd like to see race day pictures and race finish times from Alyssa's 5K go to alyssasencouragers.vpweb.com The Hope for Alyssa domain is no longer available, so the aformentioned address will link you up to the site.<br /><br />The race went so well and we are extremely thankful for all the support. It is hard to believe a month has passed already! So much planning went into it and bam it's over and done! We had a lot of fun and look forward to maybe doing it again for 2011. We had about 175 people in attendance and 106 race participants. Not bad for a 1st time event!!<br /><br />So much more to share but will have to do it another time.<br /><br />Thanks for stopping by and promise a better update sooner rather than later!!<br /><br /><div align="center"><a href="http://www.alyssasencouragers.vpweb.com/">www.alyssasencouragers.vpweb.com</a></div>Anonymoushttp://www.blogger.com/profile/05765135521155260760noreply@blogger.com0tag:blogger.com,1999:blog-4864643310537220150.post-16017366540236051452010-07-15T22:02:00.005-04:002010-07-15T22:44:01.810-04:00HAPPY BIRTHDAY 2nd ALYSSA!! Random PicturesThis is Alyssa at her ENT appointment. Since her ear canals are so stenotic (small), her doctor has not been able to see her ear drum until using this method. Alyssa is strapped into a papoose for immobility. The doctor then uses a magnifier that is suspended from the ceiling to look through while using a tiny ear spoon (my term). It's the tool they typically use to look in the ear, but it has a super small tip. I know it looks painful but I'm certain it's just annoying. Especially when you can't move your arms to swat at the thing in your ear!! When the doctor sees wax, she using the trusty ole suction machine to slurp out the wax. This is the second time Alyssa has been through this and it was great in that we learned she has good functuioning ear drums. Now all we need is an audiology exam to determine what degree ( if any)<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRFjwrj0ZurYowLNNci8GxavnpqfuGpEG5RUPDKONL9aCEmKql0BR6h_Dm8U9qn7WkSRqsA2LR2DzrokF_NXMxpDrdNGK8Rarc9aWacVQ3YmQ0BlljpIhyBQJzTmW_RwYnxz_5K-bseNU/s1600/iphone715+044.JPG"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 240px; FLOAT: left; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5494324714055888354" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRFjwrj0ZurYowLNNci8GxavnpqfuGpEG5RUPDKONL9aCEmKql0BR6h_Dm8U9qn7WkSRqsA2LR2DzrokF_NXMxpDrdNGK8Rarc9aWacVQ3YmQ0BlljpIhyBQJzTmW_RwYnxz_5K-bseNU/s320/iphone715+044.JPG" /></a> of hearing loss she has. Learning this information has been hard, but she seems to hear as she rocks out to music and will respond to her name.<br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrQUIjjOjf16p-jHWzR3q16zOF_gW0DQo3sWMxR42-lR1FQL7VsL74PqC431tp2nvaVnLiJNrBknFrZIl3ZXfjIFM4k2k9AlgWmPkHBywoGnS2K-77S184Y26KAPvwFP7UKcw81bRa3vM/s1600/iphone715+047.JPG"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 240px; FLOAT: left; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5494324705690792242" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrQUIjjOjf16p-jHWzR3q16zOF_gW0DQo3sWMxR42-lR1FQL7VsL74PqC431tp2nvaVnLiJNrBknFrZIl3ZXfjIFM4k2k9AlgWmPkHBywoGnS2K-77S184Y26KAPvwFP7UKcw81bRa3vM/s320/iphone715+047.JPG" /></a><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5hc-acfeiiZqh3QZBfM5N2UKiO-GvYusZOY_lmrFh_S9NeENnGvhASGzGC2DEafVz9Trf7V8-7-wKfdB6hKzhLuUN49gHFETHnwJypiB37PBO9bfoTnYhORIi1wiKK4pAe3lA2x3JwSU/s1600/iphone715+040.JPG"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 240px; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5494324702458322386" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5hc-acfeiiZqh3QZBfM5N2UKiO-GvYusZOY_lmrFh_S9NeENnGvhASGzGC2DEafVz9Trf7V8-7-wKfdB6hKzhLuUN49gHFETHnwJypiB37PBO9bfoTnYhORIi1wiKK4pAe3lA2x3JwSU/s320/iphone715+040.JPG" /></a><br /><br /></div><div></div><div></div><div></div><div></div><div></div><div></div><div></div><div></div><div></div><div></div><div>Couldn't flip this one! PC acting up!! this brought tears to my eyes though. We were able to trial Alyssa in a stander!! This is the supine stander which she looked great in and she loved it! Big girl standing!!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXWtxusyo4easuTWaPDfyKkGV43cOLT8IfYOTxZxE6g9RjJHm6hHyVkdPcH7COlOzocahMfvT9HqpNsoR7FJ92SBoehqPNWyHpj6wTOP1IOZwHjpYzMseXvvwKvx4HsziT1v8vxGoj_To/s1600/iphone715+053.JPG"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5494323625528182722" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXWtxusyo4easuTWaPDfyKkGV43cOLT8IfYOTxZxE6g9RjJHm6hHyVkdPcH7COlOzocahMfvT9HqpNsoR7FJ92SBoehqPNWyHpj6wTOP1IOZwHjpYzMseXvvwKvx4HsziT1v8vxGoj_To/s320/iphone715+053.JPG" /></a> This is the prone stander. It was nice to see her up but she hyper-extended her head a bit. She still needs a little reminder to maintian a proprer head tilt. It was great to see her standing!!<br /><br /><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVsskq6XrlbEtUyl1IQZ1SG6CqtCMqvC6Ggy9LmiC-fzPmP9fP0ATpcCuRg4RgfGC3KRLdhld0BumbfV78TgQ4uTCUasegMkF_-FUUu-0LAUJqb1iIoryw1ZO3Sfocq4JmjlNhxK7QBxM/s1600/iphone715+052.JPG"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 240px; DISPLAY: block; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5494323623669250882" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVsskq6XrlbEtUyl1IQZ1SG6CqtCMqvC6Ggy9LmiC-fzPmP9fP0ATpcCuRg4RgfGC3KRLdhld0BumbfV78TgQ4uTCUasegMkF_-FUUu-0LAUJqb1iIoryw1ZO3Sfocq4JmjlNhxK7QBxM/s320/iphone715+052.JPG" /></a><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjP4tLZCzYOdgyMcjZ_SetYnyVRxCJvnj1sKkoK7Ncy-WkO25ECYt_9Yvirxv9bHi-IhgK6xKn6xYxU-OIg9dhhYQ2HaPcMO7ItCM4aureqSDdxWzzU0gkohyphenhyphenCf7Cqby4O20s02M4YFsF8/s1600/iphone715+112.JPG"><img style="MARGIN: 0px 0px 10px 10px; WIDTH: 240px; FLOAT: left; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5494320557182449682" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjP4tLZCzYOdgyMcjZ_SetYnyVRxCJvnj1sKkoK7Ncy-WkO25ECYt_9Yvirxv9bHi-IhgK6xKn6xYxU-OIg9dhhYQ2HaPcMO7ItCM4aureqSDdxWzzU0gkohyphenhyphenCf7Cqby4O20s02M4YFsF8/s320/iphone715+112.JPG" /></a><br /><br /><div>Happy Birthday Alyssa! She's in her new toy, an exersaucer! It was a little overwhelming for her. Hopefully i time it will grow on her. And then Alyssa tasting the waters of her bath. She loves to have the water sprinkeled near her nose.<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLgYDkh34q_2RMN0fPAC34lodM3Mqks-XgfAokJO3WiigSXAUHz1k2KInk0aamumLAPlbAW9m_32hHHN5bLYev6keGOmfcnBMVxBy3o8eLoIsVuR_mIT-mC_8mmrJPPJxCjYVSSBCePEg/s1600/iphone715+057.JPG"><img style="MARGIN: 0px 0px 10px 10px; WIDTH: 265px; FLOAT: right; HEIGHT: 174px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5494320551778008722" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLgYDkh34q_2RMN0fPAC34lodM3Mqks-XgfAokJO3WiigSXAUHz1k2KInk0aamumLAPlbAW9m_32hHHN5bLYev6keGOmfcnBMVxBy3o8eLoIsVuR_mIT-mC_8mmrJPPJxCjYVSSBCePEg/s320/iphone715+057.JPG" /></a><br /><div><br /><br /></div><div></div><div></div><div></div><div></div><div></div><div></div><div></div><div></div><div>Wow 8 days till Alyssa's 5K run/walk! Can't beleive it is nearly here!! I hope it goes well and that everyone enjoys not only the event but learning more about Trisomy 18!!<br /><br /></div><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCL-P5FBQTs2ajpUzDG1MppJ9dw4aUD1wLCdE3H6GHEdSnsLt-p8YlJ9CmT4aAWkvAVxFBTUcpDYsXQrQXcCYosiegbyC05CKHGQswxBIWmC84aNuHviC8sSHwiNraUPPvtxIbEYX8ljc/s1600/photo.JPG"></a><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPzaNvcbKWPvVT58Y7SbOgnsYU0kH7zOe8b3_p6ho2T5FVZVv1DsOMuFLcv9UOq9ychVM8VvvVbzZLbFuI6A8Ylcsr1y-7O0iz2DQNk8HO8dXKVNxmbUanYX7wuHY3azLtGhZl29NwPTg/s1600/pronestander.jpg"></a><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0zysdDxFmr-kW9HFlLeWoj3-uwYeeKftP4vNhla3RcXxGzP6EuzmunLX2A8lH8OPfGczhywZ1oou_lMtcKZ0sBf2WYbhkadkZzMNtGsGhP_rWcxp2kEXKJts4rxiCzKV07xynW1gM1ss/s1600/photo.JPG"></a><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><div></div></div></div></div></div></div></div></div></div>Anonymoushttp://www.blogger.com/profile/05765135521155260760noreply@blogger.com1tag:blogger.com,1999:blog-4864643310537220150.post-40611795724841012452010-07-10T00:49:00.000-04:002010-07-10T00:51:00.862-04:00One week and counting...<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKp6aHoLoPePSkag6MFkz8jiu07T9XL7uzUScsVdOG7QCPYMUsgSqy87NSaTuP-qxWhBk42NH7Zx5t0cQjKCsS5RUjM65m9xLmnT7GIUOTGqweGRd81ZRpXZlNI0SIzcZA0g2RFSFubgov/s1600/july4th.jpg"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 240px; FLOAT: left; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5492127568967562146" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKp6aHoLoPePSkag6MFkz8jiu07T9XL7uzUScsVdOG7QCPYMUsgSqy87NSaTuP-qxWhBk42NH7Zx5t0cQjKCsS5RUjM65m9xLmnT7GIUOTGqweGRd81ZRpXZlNI0SIzcZA0g2RFSFubgov/s320/july4th.jpg" /></a><br /><div><br /><div><br /><div><br /></div><div>So it's a few days before Alyssa's 2<span id="SPELLING_ERROR_0" class="blsp-spelling-error">nd</span> birthday! Wow!! I know I've been a little more on edge, and trying not to think about it too much. Yet this really is a milestone, a BIG one. I mean we went from counting hours of life, to days, allowing ourselves to enjoy the celebration of weeks gained and then months. Counting each along the way as big milestones and they were (they are), but to see Alyssa turning two...it's hard to come up with the appropriate words.</div><div><br /></div><div>Foremost I thank God for this gift of time with our daughter. I know it is by His hand alone that we have enjoyed the various milestone and have been able to breathe under the weight of <span id="SPELLING_ERROR_1" class="blsp-spelling-error">Trisomy</span> 18. God has given us a great support system in each other as a family, and in various friends and extended family. These people in our lives are the tools of His grace and our tangible evidence of His kept promises. It hasn't been easy but God has used practical measures/means in our daily lives to encourage and strengthen us. The prayers on our behalf put forth by strangers and friends alike have been heard and continue to lift us up.</div><div><br /></div><div></div><div>Recently Rick <span id="SPELLING_ERROR_2" class="blsp-spelling-error">Santorum's</span> daughter Bella celebrated her 2<span id="SPELLING_ERROR_3" class="blsp-spelling-error">nd</span> birthday. She also has full T18. He wrote an article in the Philadelphia Inquirer, that nicely framed the experience of his family with T18. Some key points he made about the battle with insurers, validation for the value of his child's life and the joy of having his daughter is a common theme for many of us. I wish I could wrap up the emotion and experience as well as he did. </div><div></div><div><br /></div><div>As time goes on, as we balance the grief or is it fear of the unknown certain future (oxymoron~ I know) for our daughter with this diagnosis; I find more things to be thankful for! There are the hard days, like when Alyssa wakes up with a cold that seemingly moved in over night. It's difficult to see her struggling and the devil on my should whispers..."psst, this could be it. This could be the time." Or earlier this week when she woke up two days in a row having a asthma attack; and that feeling comes over my body as I rush to meet her needs (You know the feeling where half your tongue goes numb with an electric shock that travels down your back, you squirm to rid yourself of the feeling but it tickles ya' like a thousand tiny bugs)~ yea that feeling.</div><div><br /></div><div>There are good days a lot of them many clumped together so tightly that we almost forget the thing that our daughter is afflicted with...oh T18. Like today, seeing her groove to her dad playing guitar; clapping and smiling truly enjoying the entertainment.</div><div></div><div><br /></div><div>This blog and our caring bridge page has been a wonderful outlet too. It's great to read the response from others, very refreshing; whether it's advice, a "hello". It really brings my heart joy to get a note from another parent saying "thanks" for sharing your experience as it's giving them hope , answering questions, or boldly opposing the information that they were provided by their child's' doctor. Learning about other T18 and trying to follow their story is a great source of inspiration too. This experience can be isolating if you let it. It's not hard to get discouraged by constant need to stay on top of the various issues. It's not just the day to day care that can be wearing. It's the appointments, follow up, it's the emotional connections, it's so much that I can't even find the right words for..yet knowing that their our others out there rooting you on; walking the walk too~ it helps. </div><div></div><div><br /></div><div>From day one well meaning friends/families; many Christians wanting to convey God's love and our human frailness will say " You know none of us are promised tomorrow. None of our loved ones, our children may live beyond today..." I know this is true, yet we are human and made in such a way to forget how frail we are or how little control we truly have..otherwise we wouldn't have dominion over this land or conquer the challenges God has put before us to prepare us. The fact is I am stuck on the notion that a simple cold could = death for my daughter with T18. That another unknown quirk as a result of her condition could = death for my daughter. While this thought isn't as overwhelming as it had been in the early days, it is always there looming. Some days the cloud of it is bigger and stormier than others, but it's always there. I celebrate Alyssa's life everyday, thankful everyday; just as I am for my other kids/love ones. The truth is though just as we love our kids equally but differently my concern for her is different. this is just something I have got to accept. At times I feel like her life is like sand in my cupped hands; the grains slowly seeping through my fingers despite my best efforts for them not too.</div><div><br />I recently talked to a mom who has a 12 year old healthy daughter and I commented that her girl was tall for her age. The mom smiled warmly at me and said "can you believe she was born 11 weeks early, just 2lbs and not expected to live." In her eyes I could see her going back to her daughters' birthday and she continued telling me her daughters birth story. I enjoyed hearing every bit, watching and listening to her as she relived the moments that angered her (doctors not listening or giving information), moments that caused her to stop breathing ( her daughter having <span id="SPELLING_ERROR_4" class="blsp-spelling-error">brachycardia</span>), and moments of joy (when her daughter acknowledge her presence with a glance). This experience of being in the <span id="SPELLING_ERROR_5" class="blsp-spelling-error">NICU</span> for 10 weeks before being able to take her child home, and the following months when she had a Pulse-Ox monitor and various nursing responsibilities to care for her fragile child; remained with this mother; who now has a healthy happy 12 year old. So maybe I'm not as hopeless as I sometime allow myself to think.</div><div></div><div>In all this rambling I want to mention that Alyssa is asleep with her dad on the bed~ exhausted from a day of hard work and play. I should wrap this up and start her bed time routine~ running rather late tonight!!</div><div></div><div>Today Alyssa spent time at Lauren's House (our respite provider). They were able to borrow a stander and put her in it. It was amazing to see Alyssa standing, literally brought tears to my eyes. She was happy, smiling, babbling, reaching out for toys and watching the other kids around her. She is so ready for this transition. Please pray that her insurance, once provided with this "new" information will finally approve a stander for her!!! If nothing else that her early intervention provider could find one for us to borrow~something so far has not been possible. I'll post <span id="SPELLING_ERROR_6" class="blsp-spelling-corrected">pictures</span> of her from today soon. </div><div><br /></div><div></div><div>I want to post some pictures of her recent <span id="SPELLING_ERROR_7" class="blsp-spelling-error">ENT</span> visit and show how that see and then clean her ears. It is interesting. She went to an appointment earlier this week, and the doctor said "you know she (Alyssa) is getting less floppy. I mean she is really looking stronger and seems to be doing well." Hey~ we'll take the compliment! It's just funny about how low the expectations are for this kids, even if they are always outwardly voiced; they are there. Many times I don't even catch wind of it until a comment like that is made. </div><div></div><div>My daughter has potential, the author of your medical book didn't write her life. God did!</div><div><br /><br /><br /><br /></div><div></div></div></div>Anonymoushttp://www.blogger.com/profile/05765135521155260760noreply@blogger.com2tag:blogger.com,1999:blog-4864643310537220150.post-8366540243944000502010-05-26T22:18:00.005-04:002010-05-26T22:28:39.895-04:00Alyssa's feeling better and back to her old ways<div align="center"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdWnjPBFLkjfzif5GTxLQDKKkm9EP0lb6pLtGZeMyUoZAW77U3yNEiQvhtTHsazPwUAb-SG_P6zuC2Z-l6H3rVktDu6eUwq4Gh6NgQ0dTLwuKwyCoOUExNF7x3KIB5u36cA6nBF0x7IzQ/s1600/alyssas5klogowinner.jpg"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 147px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5475768719300633266" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdWnjPBFLkjfzif5GTxLQDKKkm9EP0lb6pLtGZeMyUoZAW77U3yNEiQvhtTHsazPwUAb-SG_P6zuC2Z-l6H3rVktDu6eUwq4Gh6NgQ0dTLwuKwyCoOUExNF7x3KIB5u36cA6nBF0x7IzQ/s320/alyssas5klogowinner.jpg" /></a><a href="http://www.hopeforalyssa.com/">http://www.hopeforalyssa.com/</a></div><br />Hard to believe it's only two months away. We continue to work hard at organizing and preparing for the run/walk. Really hoping that this event will help to make our local community more aware of <span id="SPELLING_ERROR_0" class="blsp-spelling-error">Trisomy</span> 18 and similar syndromes.<br /><br /><br />Alyssa is feeling much better! She is off supplemental oxygen during the day and has returned to her normal routine. Yea!! Lots of lessons learned with this bout with mild pneumonia~ hopefully illness like this will be few and far between. Thanks to all who wished her well, said prayers on her behalf, and encouraged me. The little princess is 22 months old!! <span id="SPELLING_ERROR_1" class="blsp-spelling-error">Weehoo</span>~~Anonymoushttp://www.blogger.com/profile/05765135521155260760noreply@blogger.com0tag:blogger.com,1999:blog-4864643310537220150.post-35537413864815116632010-05-11T12:49:00.004-04:002010-05-11T13:38:22.096-04:00THe common cold isn't so common for Trisomy 18 kids...<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiarReocXPrApdZLmXld53wCACY6ZnDzDHsEBeSawSl4whTyN0LCVqm0V2uOEnr71wLTxvrLh_YnfWYFzVwmxGkde620OXXlysOm2dU-_QfRbuiBtU15k0_Mcl-ZEW7T2TkXAsec6tyC6A/s1600/may42010+012.JPG"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 240px; DISPLAY: block; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5470065603734376658" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiarReocXPrApdZLmXld53wCACY6ZnDzDHsEBeSawSl4whTyN0LCVqm0V2uOEnr71wLTxvrLh_YnfWYFzVwmxGkde620OXXlysOm2dU-_QfRbuiBtU15k0_Mcl-ZEW7T2TkXAsec6tyC6A/s320/may42010+012.JPG" /></a><br /><div>Alyssa has been sick with a cold since Friday. It came on quick and quickly affected her lung function and heart rate. Her O2 without supplemental oxygen while awake was down to the 80's (70's a few times) and her heart rate while awake but resting was at 220. She had a <span id="SPELLING_ERROR_0" class="blsp-spelling-corrected">temperature</span> of 102.6 at the worst point. Her sleep stats were worse. We had little sleep Friday and Saturday as we tried to manage things~ we opted to keep her home and manage since we have oxygen here vs. taking her to the <span id="SPELLING_ERROR_1" class="blsp-spelling-corrected">hospital</span>. With the aide of <span id="SPELLING_ERROR_2" class="blsp-spelling-corrected">Tylenol</span>, increased <span id="SPELLING_ERROR_3" class="blsp-spelling-error">nebulizer</span> treatments, chest PT, rest, hydration and good ole' fashioned cuddling things began improving. Still sick and <span id="SPELLING_ERROR_4" class="blsp-spelling-corrected">miserable</span> on Monday we checked in with Alyssa's <span id="SPELLING_ERROR_5" class="blsp-spelling-error">pulmonologist</span>( a phone call ; visit to come on Thursday) and <span id="SPELLING_ERROR_6" class="blsp-spelling-error">pediatrician</span> (an office visit). </div><br /><div></div><br /><div>We were cautioned by Alyssa's <span id="SPELLING_ERROR_7" class="blsp-spelling-corrected">pediatrician</span> not to take on too much of the burden when she is sick; in case she takes a serious turn for the worse as she wouldn't want us to feel responsible (parent's guilt) <em>The doctors said this more kindly and was genuinely concerned.</em> So when speaking with her <span id="SPELLING_ERROR_8" class="blsp-spelling-error">pulmonologist</span> office we were given some guidelines on when we should take her to the hospital. We were within these guidelines over the weekend; which gave me a measure of confidence in being able to read Alyssa's symptoms and manage them well.</div><br /><div></div><br /><div>Alyssa is still <span id="SPELLING_ERROR_9" class="blsp-spelling-corrected">recuperating</span> from her sickness ( a cold). She is <span id="SPELLING_ERROR_10" class="blsp-spelling-corrected">wiped</span> out, so no therapies this week just doctor appointments ones that would be a bear to <span id="SPELLING_ERROR_11" class="blsp-spelling-corrected">reschedule</span>. So off we will go to them with oxygen bag in tote. </div><br /><div></div><br /><div>An interesting side note; on <span id="SPELLING_ERROR_12" class="blsp-spelling-error">Facebook</span> their is a large community of <span id="SPELLING_ERROR_13" class="blsp-spelling-error">Trisomy</span> families, <span id="SPELLING_ERROR_14" class="blsp-spelling-error">Trisomy</span> 18 mommies and there's SOFT and <span id="SPELLING_ERROR_15" class="blsp-spelling-error">Trisomy</span> 18 Foundation amongst other forms of support. It's great to have such a wealth of support at my finger tips~ you get the good, the bad and hope from the connections. It's hard some times because you share in the sadness of others when a child is sick or has earned his/her angel wings but there is <span id="SPELLING_ERROR_16" class="blsp-spelling-corrected">hope</span> when you learn of a child using a particular therapy; has gained a skill, or has been born and is thriving.</div><br /><div></div><br /><div>With this sickness a fellow T18 mom had messaged me on <span id="SPELLING_ERROR_17" class="blsp-spelling-error">FB</span>..cautioning me not to overlook the <span id="SPELLING_ERROR_18" class="blsp-spelling-corrected">possibility</span> of Alyssa having a <span id="SPELLING_ERROR_19" class="blsp-spelling-error">UTI</span> (it could be worthwhile to have a blood drawl or urinary <span id="SPELLING_ERROR_20" class="blsp-spelling-error">cath</span>.) She has never had one to my knowledge and didn't have the usual symptoms. However I did mention it to Alyssa's doctor and <span id="SPELLING_ERROR_21" class="blsp-spelling-corrected">surprisingly</span> I was told it is not uncommon for <span id="SPELLING_ERROR_22" class="blsp-spelling-error">UTI</span> to manifest first as lung issues! <span id="SPELLING_ERROR_23" class="blsp-spelling-corrected">Apparently</span> when kids with multiple heath issues are fighting an infection; the infection takes the path if least resistance, which is often the respiratory system. Since the the <span id="SPELLING_ERROR_24" class="blsp-spelling-corrected">respiratory</span> system is not usually the first place to start in relating it to a bladder/bowel issue; the <span id="SPELLING_ERROR_25" class="blsp-spelling-error">UTI</span> goes unnoticed for a while which can cause big problems. Who <span id="SPELLING_ERROR_26" class="blsp-spelling-error">would'da</span> thunk that? So I'm glad to know this now, even though in this instance it wasn't the case for Alyssa. It is good to have bits of wisdom stored for future use!</div><br /><div></div><div></div><div>Alyssa has also lost weight~ this occurred before her sickness. This is the first time ever that she has lost not gained. I am sure it is due to my fiddling with her g-tube feeds in hopes to getting her to eat more orally. There is a fine line between stuffing her to the point she vomits and meeting her caloric intake. So between this new sickness and wanting her to have some fat reserve(s) I am going to re-work things again. Hopefully helping her to regain what she has lost and find a food plan that will encourage continued weight gain while promoting oral eating.</div><div> </div><div>So in the next week we have <span id="SPELLING_ERROR_27" class="blsp-spelling-error">pulmonology</span>; orthopedics, and an <span id="SPELLING_ERROR_28" class="blsp-spelling-error">ENT</span> appointment. </div><div> </div><div>By the way May (Vera's mom) thank you about the heads up regarding <span id="SPELLING_ERROR_29" class="blsp-spelling-corrected">different</span> head gear for the <span id="SPELLING_ERROR_30" class="blsp-spelling-error">CPAP</span> machine. I did see the picture of the little girl (with <span id="SPELLING_ERROR_31" class="blsp-spelling-error">SMA</span>) and was able to get the headset ordered. Unfortunately Alyssa's nostrils are too small for the smallest size!! So when we go to her <span id="SPELLING_ERROR_32" class="blsp-spelling-error">pulmonologist</span> we will see what else we can do. Very frustrating.</div><div> </div><div>Another source of <span id="SPELLING_ERROR_33" class="blsp-spelling-corrected">frustration</span> is that Alyssa's stander continues to be denied!!! So hopefully her <span id="SPELLING_ERROR_34" class="blsp-spelling-error">ortho</span>. doctor will offer more assistance by writing a detailed letter of medical necessity.</div><div> </div>Here's when being small isn't the best of all~ladies<br /><br />Till next time~~<br /><br />Oh by the way check out the latest SOFt newsletter; a picture of Alyssa is in there. So cool! It's a overall good issue too!!Anonymoushttp://www.blogger.com/profile/05765135521155260760noreply@blogger.com2tag:blogger.com,1999:blog-4864643310537220150.post-87544329452659424092010-04-26T20:25:00.016-04:002010-04-26T20:51:31.372-04:00Some random picturesWe are looking forward to the warmer spring/summer days for more visits to the park.<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDtf7tVMx6AY4ExmHwaW92XB5Hd_zscUjpAJTypBG8Wg8QMT681Jb9ubhccwZ6fkpTGwHgaoO99ktT4Ys2JQ-WxwaLPgXcaaqiqMz8OAxiik29g6Gbw84iVfoxED-qCDnWy8_Q-zjBe5c/s1600/march+079.JPG"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 240px; DISPLAY: block; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5464612907832569794" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDtf7tVMx6AY4ExmHwaW92XB5Hd_zscUjpAJTypBG8Wg8QMT681Jb9ubhccwZ6fkpTGwHgaoO99ktT4Ys2JQ-WxwaLPgXcaaqiqMz8OAxiik29g6Gbw84iVfoxED-qCDnWy8_Q-zjBe5c/s320/march+079.JPG" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhy4bQLhMon6QP-FQrrds1EoIXh-1shuvwg1N9p_WIHlP3-j66ntOe4vDQpB9QRV5IUQLaglwnk6KvmVuiA8ShVjDgGnvAoqj_QFlSYUj4GMuJlHuOZBhTjfcm4yVMUoPdP15CKFv4BeCU/s1600/march+074.JPG"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5464612629239851506" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhy4bQLhMon6QP-FQrrds1EoIXh-1shuvwg1N9p_WIHlP3-j66ntOe4vDQpB9QRV5IUQLaglwnk6KvmVuiA8ShVjDgGnvAoqj_QFlSYUj4GMuJlHuOZBhTjfcm4yVMUoPdP15CKFv4BeCU/s320/march+074.JPG" /></a><br /><br /><div> Alyssa loved the ducks and the wind on her face.<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6cjTSsd10NtvDB2Tvqh-v3cK58Gw5tU2ROdVyNV7Bl40WigoF5ZplO4at1GguzJHBlRhM2ud2QdS32Ve831OwdtRVVuXsOebRZtxwLAQI92qzfBXEi_Zvfu6J1zU9hKb_bDl5Zo3m44Y/s1600/march+076.JPG"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5464612340603185794" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6cjTSsd10NtvDB2Tvqh-v3cK58Gw5tU2ROdVyNV7Bl40WigoF5ZplO4at1GguzJHBlRhM2ud2QdS32Ve831OwdtRVVuXsOebRZtxwLAQI92qzfBXEi_Zvfu6J1zU9hKb_bDl5Zo3m44Y/s320/march+076.JPG" /></a> <div>Don't know if she waslooking for some heavenly intervention~ cause the spoonsfuls of apple sause just kept coming and coming.<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2c80KZKqZjzI6SNqktsK3gnMuzqbu1jH42VBnX65IJzt14M5sgxaVthz96rr_ZlYtrjXZHhabg39tNiGxarIoO68LPh95QkP-uOcqE9kQMF1Nxa_b03izqLPXzhE9WIYPAnFgas-aziA/s1600/march+058.JPG"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 240px; DISPLAY: block; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5464611434433783282" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2c80KZKqZjzI6SNqktsK3gnMuzqbu1jH42VBnX65IJzt14M5sgxaVthz96rr_ZlYtrjXZHhabg39tNiGxarIoO68LPh95QkP-uOcqE9kQMF1Nxa_b03izqLPXzhE9WIYPAnFgas-aziA/s320/march+058.JPG" /></a><br /><br /><br /><br /><div>Is that a smile through the sause?<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiT0VcosCq2O8CNeTyxK8qhOdihMNAwhdGiNsHJUCwcgDLtnR11rcQTf6PLw9Wx6UT_0X-YBoyUWyawmvR87tjvkD94i8gGcOyqqFkMlkFWTEXZBQ9RfHGMoSjAFHs4v4pgSU7ZMsDyYEY/s1600/march+057.JPG"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 240px; DISPLAY: block; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5464611254361731938" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiT0VcosCq2O8CNeTyxK8qhOdihMNAwhdGiNsHJUCwcgDLtnR11rcQTf6PLw9Wx6UT_0X-YBoyUWyawmvR87tjvkD94i8gGcOyqqFkMlkFWTEXZBQ9RfHGMoSjAFHs4v4pgSU7ZMsDyYEY/s320/march+057.JPG" /></a> <div>no I don't think so?<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUK5pKNzLZNMuZix8ph6pw8bZzolTUtmZfscaTQXrHz1PQyRnvKgaxwAHmYnXv6QtuZSDu6NmChwD1G4QAQ2Clo0hw7GBZlWvACe4NGIGua9yhW1zOAB91t7Y67rwjx4OQbR8hfxRWbXY/s1600/march+055.JPG"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 240px; DISPLAY: block; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5464611046961755138" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUK5pKNzLZNMuZix8ph6pw8bZzolTUtmZfscaTQXrHz1PQyRnvKgaxwAHmYnXv6QtuZSDu6NmChwD1G4QAQ2Clo0hw7GBZlWvACe4NGIGua9yhW1zOAB91t7Y67rwjx4OQbR8hfxRWbXY/s320/march+055.JPG" /></a> <div></div><br /><div>I wanted to send a picture in Macarri's birthday card of the girls wishing her a very happy birthday. however they had other plans!!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhw0dKIJ_l-d2XaKNUEv4IuogyF9T9BGhYk8iK6IogiY7h-LjfyafMmUDR_w4WQeo-unDAdu2KVm2s57hYFDEfPTmwsY2hZc7YtIY31CiEbdhPbh0vgKLeRqwHFLz0Qvy-GvNTVMA_DYIg/s1600/march+051.JPG"> Here is a few of the 12 shots that I took<img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 240px; DISPLAY: block; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5464609738041557938" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhw0dKIJ_l-d2XaKNUEv4IuogyF9T9BGhYk8iK6IogiY7h-LjfyafMmUDR_w4WQeo-unDAdu2KVm2s57hYFDEfPTmwsY2hZc7YtIY31CiEbdhPbh0vgKLeRqwHFLz0Qvy-GvNTVMA_DYIg/s320/march+051.JPG" /></a> Alyssa loved picking up and throwing Maccri's name sign! She did this to me several times as I just snapped the picture!!<br /><br /><br /><br /><br /><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2slnNw5tMZVu_vWLekiUOT0BqCR3D7fBw_9dsjwLZ1rGSRnzvaUx_cVgmXp9Y0-9NHKEl7CnPVaC7cv2G_fBwPZ4v3M9JCLFygGcKFoeIo-L0Q659hNosVxe91JW2cIJCMbKB-SakOGA/s1600/march+050.JPG"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 240px; DISPLAY: block; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5464609488800560242" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2slnNw5tMZVu_vWLekiUOT0BqCR3D7fBw_9dsjwLZ1rGSRnzvaUx_cVgmXp9Y0-9NHKEl7CnPVaC7cv2G_fBwPZ4v3M9JCLFygGcKFoeIo-L0Q659hNosVxe91JW2cIJCMbKB-SakOGA/s320/march+050.JPG" /></a>If I forgot to say "smile!!!" They forgot to do it. She there went a few shots!<br /><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguWxqs_HHW1qSV_WqkbSlyXhsF3ukmYpClPR7a3eV4lt2Hr7a5ZSke7ffKu5ly9RnGXumCe46tCFz8pXh-mBEJxuzyoUa20xAbnaIOeLjDVPnFNVNwk5jtUPyGQplyDlaAfLI_Dx5oXyM/s1600/march+040.JPG"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 240px; DISPLAY: block; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5464609234445279506" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguWxqs_HHW1qSV_WqkbSlyXhsF3ukmYpClPR7a3eV4lt2Hr7a5ZSke7ffKu5ly9RnGXumCe46tCFz8pXh-mBEJxuzyoUa20xAbnaIOeLjDVPnFNVNwk5jtUPyGQplyDlaAfLI_Dx5oXyM/s320/march+040.JPG" /></a><br /><div><div>Trying to get both girls to stay still and smile was hard! I gave up :-)<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_BZhf12uvD80l8OZNlMnc0Pz8ywmFppugYNkaVaqm80ZYNKir6X62pY2Eah4WkOiY_eaPwWbFluvkjhr0hKuV6oYHEVllLXMcmZzSFNXh6Z1AlTFui1FmdQMKJ0H3ZV2wWhyphenhyphenvpwllwJ0/s1600/march+038.JPG"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5464608575944414578" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_BZhf12uvD80l8OZNlMnc0Pz8ywmFppugYNkaVaqm80ZYNKir6X62pY2Eah4WkOiY_eaPwWbFluvkjhr0hKuV6oYHEVllLXMcmZzSFNXh6Z1AlTFui1FmdQMKJ0H3ZV2wWhyphenhyphenvpwllwJ0/s320/march+038.JPG" /></a><br />Alyssa celebrating turning 2o months, by wearing her birthday shirt~<br /><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcxQhB5W_dM7d6_o_AF3Soxzy5FSlDN2gVRHgKwcvBAQCCpbMZPCf50gg9NGICsHd5etslo_vaZUyOlBabsaGJEqHGG9v8cqVPiIJhMaSZrqQ5dD4PEjHrJyKWIGxdxEkMIFOZOqF_h-o/s1600/iphoneaprl+017.JPG"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 240px; DISPLAY: block; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5464608149645648130" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcxQhB5W_dM7d6_o_AF3Soxzy5FSlDN2gVRHgKwcvBAQCCpbMZPCf50gg9NGICsHd5etslo_vaZUyOlBabsaGJEqHGG9v8cqVPiIJhMaSZrqQ5dD4PEjHrJyKWIGxdxEkMIFOZOqF_h-o/s320/iphoneaprl+017.JPG" /></a><br /><div>Sunny days at home...<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjh9BiHjuB_Cfp_mrYq3iVcOve2MJHis9_lo0HKcS2-FT3so6eFvAWeRv7x3fHWJPJL5TJfGjbG55qXcviRMyB1GG7b39Gu0mqTMOXzW02GCb4iKSc2XTeSDp8RjMd8iIsbNWJhnx7J05Q/s1600/42110+023.JPG"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 240px; DISPLAY: block; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5464607376735337730" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjh9BiHjuB_Cfp_mrYq3iVcOve2MJHis9_lo0HKcS2-FT3so6eFvAWeRv7x3fHWJPJL5TJfGjbG55qXcviRMyB1GG7b39Gu0mqTMOXzW02GCb4iKSc2XTeSDp8RjMd8iIsbNWJhnx7J05Q/s320/42110+023.JPG" /></a><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><div></div></div></div></div></div></div></div></div></div></div></div></div></div>Anonymoushttp://www.blogger.com/profile/05765135521155260760noreply@blogger.com0tag:blogger.com,1999:blog-4864643310537220150.post-92163958689730814752010-04-12T17:28:00.000-04:002010-04-12T17:28:16.494-04:00G-tube placement just about 1 year ago<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMWbbFbU_v1LN4_IUe9LZkJgf4cknAudXv0nKQnl175Qla_0YcABQHA2YoirP8dXpdpwqgLzgfiDbHKxF0t4QaHZElUg-jke83tTbs9JoNRpZ6_v6XYXDHyXI1KumEjIMC7FPBUCrxD-0/s1600/MOV028.jpg"><img style="MARGIN: 0px 10px 10px 0px; FLOAT: left; CLEAR: both" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMWbbFbU_v1LN4_IUe9LZkJgf4cknAudXv0nKQnl175Qla_0YcABQHA2YoirP8dXpdpwqgLzgfiDbHKxF0t4QaHZElUg-jke83tTbs9JoNRpZ6_v6XYXDHyXI1KumEjIMC7FPBUCrxD-0/s320/MOV028.jpg" /></a><div style='clear:both; text-align:LEFT'><a href='http://picasa.google.com/blogger/' target='ext'><img src='http://photos1.blogger.com/pbp.gif' alt='Posted by Picasa' style='border: 0px none ; padding: 0px; background: transparent none repeat scroll 0% 50%; -moz-background-clip: initial; -moz-background-origin: initial; -moz-background-inline-policy: initial;' align='middle' border='0' /></a></div>Anonymoushttp://www.blogger.com/profile/05765135521155260760noreply@blogger.com0tag:blogger.com,1999:blog-4864643310537220150.post-78909654972504007922010-03-29T21:16:00.002-04:002010-03-29T22:22:04.142-04:00Oh and by the way....<span style="color:#330033;"><span style="font-size:130%;">Here's one test I keep on passing</span> :</span> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgS05is0Af6Z8VSwicXkCc_gfMztgVdbPs-mgEaCBmQKC2Or9YnLw4r1brNkIq3nZLd4bmQU3vxNb6N3uXFiZzKuYDW3IAMB_FUkN5w8RcXqTfKUizQ2X2MmDsSuX2G8NH59_1-P8sDJ28/s1600/prego.jpg"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 240px; DISPLAY: block; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5454245032857279026" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgS05is0Af6Z8VSwicXkCc_gfMztgVdbPs-mgEaCBmQKC2Or9YnLw4r1brNkIq3nZLd4bmQU3vxNb6N3uXFiZzKuYDW3IAMB_FUkN5w8RcXqTfKUizQ2X2MmDsSuX2G8NH59_1-P8sDJ28/s320/prego.jpg" /></a> <em><span style="color:#330033;">yep that's right...</span></em><br /><div align="center"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhY5S_N4M8rC5zN8ytK8fmWID5qMRLZlGVm-cg6mGlIcxxV_a9LRBP177DqULCVUKw8moQYB56HRvcbWvEBn9U8Fptp2sebgeXEd_3gE89-1B7_EWjRJ1RuWAe19L3JVIG3gpn0sWxyiuU/s1600/ultrasnd.jpg"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5454244866364843362" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhY5S_N4M8rC5zN8ytK8fmWID5qMRLZlGVm-cg6mGlIcxxV_a9LRBP177DqULCVUKw8moQYB56HRvcbWvEBn9U8Fptp2sebgeXEd_3gE89-1B7_EWjRJ1RuWAe19L3JVIG3gpn0sWxyiuU/s320/ultrasnd.jpg" /></a><span style="font-family:georgia;"><span style="color:#330033;"><strong><span style="font-size:180%;"> Due: October 2010</span></strong></span></span></div><span style="font-family:georgia;"><span style="color:#330033;"><strong><span style="font-size:180%;"></span></strong></span></span><br /><p><span style="font-family:georgia;"><span style="color:#330033;"><strong>So this explains the icky feelings, increasing fatigue, fortgetfulness and a host of other such things. We are excited and can't wait for Alyssa to meet her new little brother or sister! Oh and the kicker now that I'm over 35 I'm considered an elderly mother okay maybe not elderly but they sure as heck make me feel like it. Anyhow just wanted to share our good news!</strong></span></span></p><p><strong><span style="color:#330033;"></span></strong> </p><p><strong><span style="color:#330033;"></span></strong> </p><p><span style="font-family:georgia;"><span style="color:#330033;"><strong><span style="font-size:180%;"></span> </p><div align="center"><br /></strong><br /></div></span></span><div align="center"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEio2YvhYHozNDTVlQ1_C8EN8rbJbfWDHOLD-fyaVVu55X15-dx9uztPTbwWreo3IYImrGrhBkj5Ty8UhDYK6waDbU9tsG86RiF_vItJHsBt45a6nuy5OltkOssnjNlngPfVZYBko2NEvyQ/s1600/prego.jpg"></a><br /><br /><br /><br /></div>Anonymoushttp://www.blogger.com/profile/05765135521155260760noreply@blogger.com2tag:blogger.com,1999:blog-4864643310537220150.post-47171784859501609512010-03-21T19:41:00.002-04:002010-03-21T19:56:14.560-04:00Quick updateIt's been crazy busy here at home between birthday celebrations (our older daughter turned 4!!); sickness including a bout with Scarlet fever my younger son and Alyssa's 5K preparation; time has been well...limited.<br /><br />Shortly after my last update I did get some news on baby Ritzman that she was born and remained in the hospital on supported breathing. upon opening my email this evening I find yet another update: Melanie and baby Ritzman are home! Discharged yesterday, the baby is on an apnea monitor and is being assisted with a NG tube for her nutrition. Praise God! Mike and Melanie's baby girl was born on the 23rd of February, so she will be celebrating her 1st month birth celebration at home. How sweet for her and her family! I don't think the Ritzman's blog, but as I am given permission I will post updates on Baby Olivia's condition.<br /><br />Sadly after my last post baby Caleb's mom went into labor and Caleb was born into the arms of Jesus. I believe he was born at 35 weeks possibly 36. I trust that Calebs family would appreciate any prayers on their behalf. I know I hadn't given much information about them as I was just meeting them myself; however in my brief contact with Caleb's mom; they were ready to ride the T18 ride. In other words that were very excited to meet and parent this little one.<br /><br />Every life is precious. Every child is a child with hope.Anonymoushttp://www.blogger.com/profile/05765135521155260760noreply@blogger.com0tag:blogger.com,1999:blog-4864643310537220150.post-20128797007306304142010-02-26T22:33:00.005-05:002010-02-26T23:06:47.078-05:00UpdatesMany of you have inquired about The Ritzman family. Unfortunately I don't have an update for you. The last contact I had with the family, regarding the baby was via a general mass e-mail indicating that Melanie would be heading to the hospital on 2/23/10 to deliver the baby. I trust that the Ritzman's know that prayers continue to be said on their behalf and I hope (as I know you all do) that they will be kind enough to provide an update when able. For those of you on this T18 journey you know how breath taking those first few moments and days can be...so remain hopeful for this little one.<br /><br />Another local (to me) baby diagnosed in utero with T18 is expected in the next few weeks. I hope to get permisson from his parents to share thier story as well. Until then prayers for Baby Caleb's family would be appreciated.<br /><br />Another neat event coming up is our friend MaCari will be turning 2!!! Macari's mom came across Alyssa's blog almost a year ago and we've kept in contact. Somewhere in this blog there are pictures of this adorable little girl. I've got to ask her mom for more. Macari had some sickness over the winter but over all is doing really well. So take that T18!! Macari has full T18 too! Her big day is March 10th!!<br /><br />Alyssa has celebrated her 19th month on this earth Feb. 15th! She continues to do well overall. We are working out some kinks with the Bi-PAP machine. If anyone knows where we can get nasal cannula's that would be compatible with the VPAP III by Resmed~ DO TELL! The gel mask is really difficult for Alyssa. I'll dedicate more time later to go into details, short-n-sweet we would love to use nasal prongs. We have heard of Nasal Air II for kids but the smallest it goes to is for a 40lb child. So we will continue to look..Otherwise Miss Alyssa is 20lbs 9 ounces and 28" long. Our little star!<br /><br />Below are some older video's of Alyssa when she was between 14-17 months old. Just wanted to share them.<br /><br /><br /><p><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dxLVXT7QLdieoc2IUxjgq8TT2c76Ks5q4bG09aIMvqli_ucYLEzbhQzP3CVF_Guj7oQYHU24L-AJV366VpDFQ' class='b-hbp-video b-uploaded' frameborder='0'></iframe> we continue to work on feeding orally!!</p><p> </p><p> </p><p></p><br /><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dxrlcHIplb0zoTmQM-s6hwAKbAFzsMpe-1W09TaBH8PodY6jS7NQAw1VfaYl99MWfoEXmtInTruk1e1P4H8Dw' class='b-hbp-video b-uploaded' frameborder='0'></iframe> just listen to her!Anonymoushttp://www.blogger.com/profile/05765135521155260760noreply@blogger.com5tag:blogger.com,1999:blog-4864643310537220150.post-17582258081760887632010-01-27T23:10:00.004-05:002010-01-27T23:37:15.168-05:00ALYSSA'S 5K LOGO ART CONTEST<div align="center"><span style="font-size:180%;"><strong>ALYSSA'S 5K LOGO ART CONTEST</strong></span></div><br /><div align="center"></div><br /><div align="center"><strong><span style="font-family:georgia;font-size:180%;">Create an awesome logo and you may be the grand winner whose work will be used for our shirts, banner and/or signs!!<br /></span></strong></div><br /><div align="left"><em><strong></strong></em></div><br /><div align="left"><em><strong>The Purpose:</strong></em> In July 2008 our daughter Alyssa Grace was born with a genetic condition called Trisomy 18. 90% of babies born with this chromosomal abnormality die within their first year of life. Thankfully Alyssa is surpassing the statistics. To celebrate her second birthday; we will hold a benefit walk in her honor to promote Trisomy 18 Awareness. Our hope is that this Logo contest will raise awareness about Trisomy 18, as well as generate a cool design to symbolize Alyssa’s life story. </div><br /><div align="left"><br /><strong><em>Who Can Enter:</em></strong> <span style="font-size:180%;">Anybody! We encourage students and teachers to get their art classes involved. Artwork may be hand-drawn or digitally produced; all work must be digitally submitted. If you are creative this is a contest for you!<br /></span></div><br /><div align="left"><strong><em></em></strong></div><br /><div align="left"><strong><em>Entrance Fee/Prizes:</em></strong> <span style="font-size:180%;">A $10 .00 entrance fee for the submission of work is required with entry. The Grand Prize winner will receive the CASH PRIZE of $250.00, an official Alyssa's 5K 2010 t- shirt and will be verbally recognized at the benefit walk. Aside from our gratitude and the admiration of your peers, the Grand Prize Winner, and Honorable Mentions will also be acknowledged on the Hope for Alyssa website (www.hopeforalyssa.com), along with a picture of their artwork.<br /></span><strong><em></em></strong></div><br /><div align="left"><strong><em>Deadline*:</em></strong> <span style="font-size:180%;">Entries are to be digitally submitted no later than 11:59pm U.S. Eastern Time on Saturday, April 17th, 2010.<br /><strong></strong></span></div><br /><div align="left"><span style="font-size:180%;"><strong>Submit Entries at: <a href="http://www.hopeforalyssa.com/">http://www.hopeforalyssa.com/</a> </strong></span></div><br /><div align="left"><span style="font-size:180%;"><strong><br /></strong></span><span style="font-family:verdana;">BE CREATIVE, HAVE FUN, WIN MONEY AND HELP ALYSSA TO SPREAD THE WORD ABOUT TRISOMY 18!</span> </div><br /><div align="left"></div><br /><div align="left">For complete contest detials and terms please visit <a href="http://www.hopeforalyssa.com/">http://www.hopeforalyssa.com/</a></div><br /><div align="left"></div>Anonymoushttp://www.blogger.com/profile/05765135521155260760noreply@blogger.com0tag:blogger.com,1999:blog-4864643310537220150.post-89575417648829741772009-12-31T09:46:00.002-05:002009-12-31T10:00:16.845-05:00A hearfelt plea from Melanie...<em><span style="font-size:85%;">With Melanie's permission I am posting an e-mail she had sent to me this morning. I did not post the family picture however if you'd like to <strong>see</strong> the Ritzman's and their beutiful family it can be sent to you privately. I told Melanie that there is a strong T18 community out here. I hope that you will raise your voice, share your strength with the Ritzman's. I only "met" Melanie a few days ago through a friend of a friend, but my heart goes right back to those beginning days with Alyssa Grace. My heart now aches for this family and the truama that they are being put through just to see the face of their MIRACLE BABY! How can this be? I don't have answers, but I do have a willingness to help in any practical way that can.~ Trish</span></em><br /><br /><strong><span style="font-size:130%;">A note from Melanie:<br /></span></strong><br />I know what I am about to ask is a leap of faith on all your parts. I am asking you to share a piece of your personal and private heart’s story with me, a total stranger, and a group of Doctors you don’t know. I promise I would not miss use this but a thought has occurred to me. These Doctors believe the medical statement “ that Trisomy18 is not compatible with life”. What would happen if they, as a group, were faced with your children’s pictures, medical list of complications that each of you have and are currently facing, and you child’s current ages ???? Then maybe they would see PROOF OF LIFE . Also they would clearly see a realistic view into a lifestyle of right to life.<br /><br />Would you please help me?!?!?!?<br />Would you please network this out to anyone who has a Trisomy18 child.<br />Below I have attached an explanation of what is happening to our family right now.<br />And a current family photo of us. Melanie and Mike Ritzman of Lancaster County, PA<br /><br />Well this is the latest<br />1st my husband sweet honey pill version<br />and then my right between the eyes Mother Bear version.....<br />same day, same stuff, & he is the better Christian than I !!!!!!<br /><br /><em><strong><span style="font-size:130%;">Mike's Thoughts...<br /></span></strong></em><br /><em><span style="font-family:lucida grande;">Dear Prayer Partners, </span></em><br /><em><span style="font-family:lucida grande;"><br />Melanie and I would covet your prayers. We have some disturbing news to share with all of you. Earlier this week Melanie had an OB appointment with a doctor instead of a mid-wife. One of the questions we were to get nailed down before delivery was whether the doctors in our practice would perform an emergency c-section if Baby Joy was in distress. T18 babies typically go into distress during labor. The answer Melanie received as quite disturbing. The doctor basically told Melanie that there would be no need for a c-section because "IT" is going to die anyway.<br />Today, Melanie and I had an appointment with the NICU advocate and received further clarification... The OB doctors in our practice are "indecisive" as to whether they will perform an emergency c-section if Baby Joy is in distress. We will have a final decision next week when our advocate and midwife meets with the doctors to discuss our case... Please pray that the doctors will perform an emergency c-section if needed.<br /><br />Melanie's midwife has been great and will do everything that she can to see that Baby Joy comes into this world. The NICU is on board and will do what they can to make sure she gets the care she needs. CHOP, DuPont, and John's Hopkins do work with T18 issues. The only problem is whether our delivery doctors will perform an emergency c-section if she is in distress.<br /><br />On a positive note, we have been put in touch with 7 families that are raising T18 children ages ranging from 13 months to 23 years. This makes the above prayer request that much more distressing. We have a friend that works at Johns Hopkins and she is getting us contacts there with medical professionals that deal with genetic diseases. One of the families that we are in contact with is giving us contact information for doctors at Children’s Hospital of Philadelphia (CHOP).<br />Melanie and I are in a spiritual battle regarding the sanctity of life... The medical community is split on how to handle children diagnosed with T18. She has been labeled and is not even referred to as a person. She is an "IT". It appears to me that the sanctity of life only applies to healthy children.<br /><br />Please pray that Melanie and I keep our "cool" and can maintain a witness through this entire process. Please pray that we will be able to find another OB practice that we can work with if these doctors will NOT agree to perform an emergency c-section. We have had a lot of emotional ups and downs. </span></em><br /><em><span style="font-family:lucida grande;"><br />Well, I think I have sufficiently overloaded all of you. Please feel free to ask us any questions that you might have..<br /><br />Thanks for Praying<br /><br />Mike </span></em>Anonymoushttp://www.blogger.com/profile/05765135521155260760noreply@blogger.com8tag:blogger.com,1999:blog-4864643310537220150.post-12530354662976797392009-12-29T17:38:00.007-05:002009-12-29T18:08:15.725-05:00A pregnant mom whose baby has Trisomy 18 is looking for information<div align="center"><span style="font-size:130%;">Alyssa looking very compatible with life, Christmas morning with some of her gifts.</span><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi565aEbCj6G1gukrm8jWHT8L_APhp1nN1y6I7v-7cukwH4PtozYdp9AEECX2vEnchnUATjsjWGU6t7nS8KoavDVSIe_0KXzbJyuh9nwCSFSP8bJEt8Ie3eFz8eV1IcGtchzrB5pmKq1zE/s1600-h/snwdynmre+115.JPG"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 260px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5420797191775395586" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi565aEbCj6G1gukrm8jWHT8L_APhp1nN1y6I7v-7cukwH4PtozYdp9AEECX2vEnchnUATjsjWGU6t7nS8KoavDVSIe_0KXzbJyuh9nwCSFSP8bJEt8Ie3eFz8eV1IcGtchzrB5pmKq1zE/s320/snwdynmre+115.JPG" /></a><br />Can you explain T18 in 20 words or less? Neither can I and so I need your help! I just came in contact with a lovely Christian mom, who is currently pregnant with a baby girl diagnosed as having <span id="SPELLING_ERROR_0" class="blsp-spelling-error">Trisomy</span> 18. We had a long talk and this mom is on the ball with getting informed and preparing for her future little one. Melanie is a well experienced mom but is new to the world of T18. She still has questions and would love some encouragement for this journey.</div><div align="center"><br />I didn't know that Alyssa would have <span id="SPELLING_ERROR_1" class="blsp-spelling-error">Trisomy</span> 18 prior to her birth, so I am at a loss for helping another mom prepare. If you would e--mail me or leave your contact information I will get you in contact with Melanie. They do not have a website/<span id="SPELLING_ERROR_2" class="blsp-spelling-error">Facebook</span>. Melanie and Micheal's baby girl is due <span style="color:#993399;"><strong>March 19<span id="SPELLING_ERROR_3" class="blsp-spelling-error">th</span></strong></span>! So this makes Melanie about seven and a half months pregnant. </div><div align="center"><br />Melanie was recently seen by an OB in her practice and she shared with me the following experience<em>:" <span style="color:#666666;">He was recommended because he had birthed two <span id="SPELLING_ERROR_4" class="blsp-spelling-error">Trisomy</span>18 babies already.<br />I soon realized that he had just let them die upon birth and his statements to me are following: We do not need to do a cesarean if "it" has distress during normal labor"it" is not compatible with life and should just be left to die I WAS AND STILL AM ILL TO MY CORE with that Doctor's thoughts..."</span></em><br /><br />Alyssa is 17 months old, my heart is overfilled with the joy that she brings to our everyday lives. I am learning more and more that this T18 community is strong. If you have information that would benefit Melanie and Micheal in their situation, please leave a message here and send along your contact information to me so I can forward it to them.<br /><br />Thanks! </div>Anonymoushttp://www.blogger.com/profile/05765135521155260760noreply@blogger.com6tag:blogger.com,1999:blog-4864643310537220150.post-87992130208412571652009-12-29T14:30:00.004-05:002009-12-29T15:34:26.355-05:00Christmas Photo Ops..<div align="center"><span style="font-size:180%;color:#cc0000;"><strong>Merry Christmas and Happy New Year !</strong></span><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMuMr4EbyaYtPWjf7q4DSkYfbkgVrdmTXqQDo3kFM-LtFFwtdg5Zi2gsMu-M7aErfOmfsJqsU_5yxaitB552uwPZIOjXjkEuNH9bt7ouY13U00Yiwkm4pc-3Fyrm4NNtu__So9uX_RkFs/s1600-h/chrstmaspic+1-8-1970+10-21-33+AM.JPG"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 275px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5420746438768357650" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMuMr4EbyaYtPWjf7q4DSkYfbkgVrdmTXqQDo3kFM-LtFFwtdg5Zi2gsMu-M7aErfOmfsJqsU_5yxaitB552uwPZIOjXjkEuNH9bt7ouY13U00Yiwkm4pc-3Fyrm4NNtu__So9uX_RkFs/s320/chrstmaspic+1-8-1970+10-21-33+AM.JPG" /></a> <em>Here are few pictures taken over the kids winter break:</em></div><div align="center"><em><br /></em><span style="color:#009900;"><strong>The Girls</strong></span><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhefok1WdEk9RCkGkY5jc61h7Nt9fxGFOGuTuqxytiYlH-ERLLt9mPKP9aCEZYOam6sDLponT-DMDCRidiWovELNVHhxln2W2hs9HCyOBrXb1rJ12gO2_vLgb0MBvHwj-t0Iu6giSdcPk8/s1600-h/december+051.JPG"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5420746431841868898" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhefok1WdEk9RCkGkY5jc61h7Nt9fxGFOGuTuqxytiYlH-ERLLt9mPKP9aCEZYOam6sDLponT-DMDCRidiWovELNVHhxln2W2hs9HCyOBrXb1rJ12gO2_vLgb0MBvHwj-t0Iu6giSdcPk8/s320/december+051.JPG" /></a><br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghGpKwYncm4XbHq5TqiT1UmgB4nlYpsyqYBlULjYEf5yIacnBXjaWNK7uRes6on4WExjvSCBO2T-WFR-GXc9r9KETecB5x1ycoCjkPknVhYFYrNR8mQvzF30rEgYH-9JBKfx9ZxRdTSXw/s1600-h/december+064.JPG"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5420746424937752754" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghGpKwYncm4XbHq5TqiT1UmgB4nlYpsyqYBlULjYEf5yIacnBXjaWNK7uRes6on4WExjvSCBO2T-WFR-GXc9r9KETecB5x1ycoCjkPknVhYFYrNR8mQvzF30rEgYH-9JBKfx9ZxRdTSXw/s320/december+064.JPG" /></a><em><span style="color:#ff0000;"> Alyssa's oldest brother and her older sister and I</span></em><br /><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGnQbGBqIycGdNDhympZ5PfJKLNd0KzLg4jTqBBOohkwRueyn0H0c16MbFU3gCv0FWjH-TwFQNxuHV8ZwZ7bEv73AhGp9jnJGAvfYkOWrsdc2j2QRb9FEZJcHC-QprmTJD3gmpmfiMDj4/s1600-h/december+057.JPG"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5420746418269887458" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGnQbGBqIycGdNDhympZ5PfJKLNd0KzLg4jTqBBOohkwRueyn0H0c16MbFU3gCv0FWjH-TwFQNxuHV8ZwZ7bEv73AhGp9jnJGAvfYkOWrsdc2j2QRb9FEZJcHC-QprmTJD3gmpmfiMDj4/s320/december+057.JPG" /></a><strong><span style="color:#009900;"> So sweet!</span></strong><br /><br /><br /><span style="font-size:130%;color:#ff0000;"><strong><em>Wonder if Jess tastes good?<br /></em></strong></span><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipd1gqKriq585s2zkODZpNTVTHD_tV-T-UfOfufemek52gtdWoJ97rnIOEOYOehIptCNJzsEZN96fTPothzGLTD6DH4nud_DZIm6FJ18DGTAIU2sjlzisgfEzbpKsbeEoc5QNfl8UULAY/s1600-h/december+056.JPG"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5420743447972798114" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipd1gqKriq585s2zkODZpNTVTHD_tV-T-UfOfufemek52gtdWoJ97rnIOEOYOehIptCNJzsEZN96fTPothzGLTD6DH4nud_DZIm6FJ18DGTAIU2sjlzisgfEzbpKsbeEoc5QNfl8UULAY/s320/december+056.JPG" /></a><br /><em><span style="color:#006600;">Miles of Smiles<br /></span></em><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcCtZq3vvoZanmUDOtoyNGex2Bn2gwVz2AYs1REEVpvKvYiWxWeWONZ7w7_VLeGqrI8S0HMMbJtmLdgCdGPn6hO8QbXgTpKllyReKPyZtPcePojNOMnMVrSNsrBVAOQT-mAo8xbKrh7kE/s1600-h/december+048.JPG"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5420743441045088914" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcCtZq3vvoZanmUDOtoyNGex2Bn2gwVz2AYs1REEVpvKvYiWxWeWONZ7w7_VLeGqrI8S0HMMbJtmLdgCdGPn6hO8QbXgTpKllyReKPyZtPcePojNOMnMVrSNsrBVAOQT-mAo8xbKrh7kE/s320/december+048.JPG" /></a><br /><br /><br /><span style="font-size:130%;color:#cc0000;"><strong><em>Cuteness coming and going...</em></strong></span><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhONk_X5sINEXLV1cofWgQn672jtbZCmQpfmel87UgjZ4-aNYQgE4nP6Zu1phu1nfFhiIseqyRFNg-l6vs-vE3GslGuvOPOEWtcKOZRdxCLndtwchIX7hPWJMHye5BVedXfRBrw8EoRlBw/s1600-h/december+045.JPG"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 240px; DISPLAY: block; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5420743435859651250" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhONk_X5sINEXLV1cofWgQn672jtbZCmQpfmel87UgjZ4-aNYQgE4nP6Zu1phu1nfFhiIseqyRFNg-l6vs-vE3GslGuvOPOEWtcKOZRdxCLndtwchIX7hPWJMHye5BVedXfRBrw8EoRlBw/s320/december+045.JPG" /></a><br /><em><span style="font-size:130%;"><span style="color:#006600;">One of my favorite pictures:</span><br /></span></em><div><span style="color:#006600;"></span><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKsil-6Ua_JoMrxYd_hn2aaPrdiy2P1t2oSgXh80YYCvHSpOhv0CMGmkEAYntg1veAPnqmNLcHIqpP8u3wYgksYTAw9aSPoW5dxhQIlU45vLDHBSY3fiHPvZHMLYRpzAsBOTCNoStT6bY/s1600-h/december+044.JPG"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5420743426652742530" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKsil-6Ua_JoMrxYd_hn2aaPrdiy2P1t2oSgXh80YYCvHSpOhv0CMGmkEAYntg1veAPnqmNLcHIqpP8u3wYgksYTAw9aSPoW5dxhQIlU45vLDHBSY3fiHPvZHMLYRpzAsBOTCNoStT6bY/s320/december+044.JPG" /></a><br /><br /><span style="font-size:180%;color:#cc0000;">Definetly a Christmas to remember!<br /></span><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEip9T9e_K5ISWooeJwEZZxufE3DxYTOfgbLZ6ofKZJN4FHFgeg3iKq5GTWmCzvU8N8pbxg_AJGSMCyo7uL7GAKN90MGa9RtQK_c3HexoVQeHPU3rgl6bENqO1J94QEw-y2IUyLBUePKmV0/s1600-h/december+042.JPG"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 181px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5420743423688172082" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEip9T9e_K5ISWooeJwEZZxufE3DxYTOfgbLZ6ofKZJN4FHFgeg3iKq5GTWmCzvU8N8pbxg_AJGSMCyo7uL7GAKN90MGa9RtQK_c3HexoVQeHPU3rgl6bENqO1J94QEw-y2IUyLBUePKmV0/s320/december+042.JPG" /></a><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><div></div></div></div></div></div></div></div><br /></div>Anonymoushttp://www.blogger.com/profile/05765135521155260760noreply@blogger.com0